Life With Crohn's Disease : My Journey's Chronicle

I know what's coming, I wish I didn't

2012-01-25T14:49:00.008+08:00

The thing about living with chronic illness is that after a few years, in my case almost 16 years of symptoms and 13 years since diagnosis, you just know so much about your illness. I know all about it, and sometimes I wish I knew nothing. I know what to expect, and what meds can do to me, what surgery is like, what months of endless symptoms I have endured and the desperation of trial and error experimenting with drugs to find the optimal dose.... and sometimes I wish I knew nothing. That I could just face each experience with a blank slate and let a new experience leave its mark, not anticipating what is going to happen based on former experiences.

That would, however, negate the value of lived experience, or is that experienced life? :) Yes, I do wish I didn't know that trying an immunosuppressant like azathioprine would cause havoc on my system, but I knew when I began going on it this second time round last August that it would be hard for me, because I had tried it before. In fact, the side effects were worse this time. When the dose was increased to the appropriate dosage for my weight I went through nightmarish migraines and vomiting... and having gone off this drug for just 5 days I feel transformed. I feel alive again. I have no headaches, no vomiting, far less photo sensitivity, no feelings of constant fluey-ness and extreme fatigue. I literally feel transformed. I feel good.

But the Crohn's symptoms aren't under control. My tummy isn't well. We're standing by 2 antibiotics to deal with the watery diarrhoeas... but I am afraid to take them, again because I know what will happen. I will have even more diarrhoeas, almost uncontrollable. I will be drained and lifeless. I often get depressed on antibiotics. I will be afraid to leave home because I need the comfort of my own amenities. I will lose my apetite and eating will be a chore. I will feel ill, in the hope of feeling better.

I have decided not to take these antibiotics yet. Just waiting in the hope that my tummy will settle on it's own maybe soon... though that isn't likely to happen. I also have a busy weekend coming up and I don't want to be toilet bound... I want to leave home and do stuff with my kids and friends. I want to live. I want to make plans and be able to fulfill them, not have my life hijacked every now and then by meds, side effects, the disease. Maybe next week when the kids are back in school I will be brave enough to take this double whammy of antibiotics. Ugh.

This version of the disease that has returned after surgery seems to be a tough cookie version. The kind that is defying the usual meds. What's left in the arsenal of weapons that I haven't tried before? Should I resign myself to a life of endured side effects in the hope that somehow I will get better, even if I never feel better? But I want to actually feel better, not just remain symptomless!

What quality of life is there if symptoms disappear but a person doesn't actually feel better? If the side effects from the meds make you miserable then what's the point? Ah, but if we don't get the inflammation under control it will result in eventual strictures/obstruction necessitating surgery, and I have already had 40 cms or so of my small intestine removed. I don't have a lot to spare for further surgeries!

So yes, I know what's coming. Trial and error... let's try this or that and see what happens and fine tune and tweak. And test our blood and urine and occasional stool samples and along the way we'll scope and scan and x-ray and monitor. And somewhere in the midst of the many weeks and months of all this going on, somewhere in the midst of all this trial and error, living occurs. I continue to function and do what I can. But will I find that sweet place in the spectrum of trial and error that will result in my going into and staying in remission ie symptomless? And at what cost, this "symptomlessness" if the side effects torment me?

I wish I knew nothing of all this. Oblivion. Or is it Ignorance? Yes, ignorance is indeed bliss. Not knowing is easier than knowing. Though I comfort myself that having gone through what I have I can encourage others, and yes, I can steel myself for what is to come. I can shed a few tears knowing I will suffer but I have always seen the light at the end of the tunnel, and some days it's been manageable and others days not so... but overall I'd really have to say life is good.

Despite everything, life is truly good. I remind myself often that I am blessed. Family, friends, love and affection, 3 square meals, a lovely roof over my head, some ill fitting "fat on steroids, skinny in a flare up" clothes... I have so much. What's there to complain about? Nothing essentially. The discomfort, the occasional pain, the indignity of a disease involving (Gasp!) "bowels", the mental and emotional anguish I feel, the guilt I constantly push away... All of these things are battles I fight daily. I know my mind and my heart and I know the wars I must wage in order to emerge victorious. Only I can fight this battle, no one else can do it for me.

I wish I didn't know what the rest of my life is going to be like. But I think I can imagine it. An incurable chronic disease doesn't leave many options. I have to live with all of this now, and tomorrow and probably forever. At the pharmacy the other day I saw adult diapers and my heart did a skip. Then I was scanning shelves for fun (yes, I need a social life! :) ) and I saw colostomy stuff... stuff that helps you live with a bag that collects stool once you have had your colon removed. Oh God. So much to look forward to...maybe I won't go through all that? Maybe I'll be spared? Maybe I'll just fade away quietly in my sleep once my kids are all grown up and my purpose in life and the reason for my existence, whatever that is, has been fulfilled... Maybe I'll be spared the indignities of old age. Maybe I'll face those indignities better, having suffered now? What if I just get so tired and fed up along the way? No, I must not! I shall not! Wage that war! Fight that battle! Win it!

My friend's teenage daughter is fighting for her life. She has brain cancer, and then caught 3 opportunistic infections, one in her lungs. While struggling to breathe on her own she had an undetected stroke. She was placed on a respirator for a few days, and when they tried to bring her out of sedation they realized that some oxygen deprivation had occurred, and they found the stroke. She's conscious, but not responding. We are all praying desperately that she will recover. How does someone recover from so much? It would take a miracle. God in His mercy can heal. She's so young, she's barely lived. Let her fully live, and live fully. Please, God.

I no longer seek desperately for my own healing. When confronted with the many sufferings of others, in this case my friend's daughter, and her own suffering, and that of the entire family... I feel so terribly, desperately, indescribably... normal. I look so normal no one could guess anything was wrong with me. How can I ask for anything more from God when I already have so much, and so many are in such far more desperate need than I am? I have been asked to seek healing, but I no longer actively do. God need only say the word and I would be healed. That He does not heal me in no way diminishes my regard for Him, He must be far busier dealing with those whose suffering is far greater than mine. Or not. :) Whatever the case, I have no answers, and these days few questions. I do know that I'd rather ask for someone else's healing than for my own.

Whatever the future holds, I will always know what is coming to some extent. I just pray for continued grace to accept the things that I truly cannot change, and for a loving heart to look beyond my own little world and to feel for others. If I can do that and it makes my life just a little more meaningful I am happy.

Thanks for reading.

Pav

Numb and Dumber

2012-01-18T16:51:00.007+08:00

I've just gone off steroids, namely Prednisone, after almost 6 months of tapering from 30mgs down to zero. I have to say nothing quite gives you a roller coaster ride like Pred does. One of the things I dislike about life with Crohn's is having to go on drugs that affect me in horrible ways. In addition, there is the fact that as one ages, bits and pieces of the body start to fall apart. If one lives with pre-existing chronic illness then the bits and pieces falling apart is likely to be accelerated, and so many find themselves aging before their time.

I think the worst thing, for me, is the sense that my brain may be aging fast. My friends tell me they too have trouble remembering things, they too are confused from time to time, they also feel a little brain dead on occasion and forget what they had for breakfast. Phew, I am not alone. But I am scared that my brain may be aging much faster, and I wonder if my meds are affecting it in any way.

The other day I tried to say something to my daughter, and a complete sentence of pure gibberish came out. I was shocked. I recovered and made sense when I next spoke, so I figured I wasn't in the middle of a stroke or something! But what happened to my brain, and why couldn't I string some simple words together? For the next few days I noticed that I kept getting consonant sounds mixed up, here and there, but eventually that passed.

I feel numb and dumb sometimes in my brain. I try to make intelligent conversation and feel like I am failing all the time. Either it doesn't sound intelligent to me or I am afraid to engage people because I don't want them to think I am stupid. And so for some months now I have chosen largely to hide away. Not quite a social recluse, I prefer to write on Facebook, or sms my frens where I can type and re-type and self correct. And yes, my spelling mistakes are piling up and I am embarrassed by that.

Wondering whether my hormones are out of whack I did a hormonal blood panel test. Twice. Both times the results say I am menopausal. Huh? Or is that Duh? Really? I do remember other women saying that when "the change" came into their lives they went through a season of brain fog. I think I have brain fog. Along with brain swamp, and maybe brain marsh too :)

Definitely something is happening to my brain. It's losing it's sharpness. I'm losing my mental acuity and that makes me very sad. I used to be a Uni debater. I enjoyed witty repartee. On the spot speedy responses, the thrust and parry of ideas flowing in a near frenzy. What a far cry from those days. Of course, that was in the late 1980's... It's been over 20 years now! But I cherish that side of me, it's an important part of who I am. To find it diminishing, even in the slightest form, is disheartening.

Just how much of what I am experiencing now is due to my meds and indirectly to Crohn's? I wish I knew. I wish I could stave off this mental slide. I wish I could rejuvenate my brain and feel smart again... Maybe I should just accept my diminishing self and love myself and write a whole lot more and not worry about being with people and sounding intelligent. People are tiring anyway. Haha! Amazing how the mind can justify a million things if it tries hard enough! Yes, people are tiring, and I'm bad at sitting down and being quiet. I have to speak, and then I worry about sounding intelligent! haha :)

I remember once a few years ago I attended a fancy dinner, and I was so tired and probably my brain was shutting down for the day and I had so little to say to the near strangers around me. I am pretty certain I heard one man tell his wife, "See that's what happens when you stay home and be a housewife." Gasp! I don't always want to chat up strangers, though on a really good day I can do a decent job! But the cheek of the man! I am not going to go into the whole thing about stay home vs working mums... people do what suits them best. I don't think my brain has atrophied from staying home. I do know that my heart has grown. So, maybe that's a trade off I can live with! Seriously though, it does take a brain to raise 4 kids! Let Mr Smarty Pants try it for a week. He'll be begging for mercy! :)

I have become more sensitive to remarks about my brain or lack thereof. Just today I was hurt by a stranger who probably meant no harm, but seemed to imply I wasn't witty. I connect witty with brainy and so an attack on the witty front is a an attack on the entire brain! I was saddened. I was tearful. I was overwhelmed by a sense of failure. Oh my. I put it down to the effect of steroid withdrawal. Pred is well known to cause a flux in emotions. I decided to be kind to myself, and go with the flow. I wasn't stupid, I told myself. Just silly. (which is not the same as being stupid! haha!) I just wish that I had a thicker skin. Then I'd shed fewer tears, and life would be a lot less moist. Maybe the brain fog is a result of evaporating tears? A sort of enveloping higher humidity caused by tears burning off my overly heated skin? oooh :)

Well, who knows why the brain fog is here. Let it be. I embrace whatever it may be. I hope it isn't anything serious. I really don't want to deal with too much more. In the midst of the brain fog I am still able to write, to chat with my kids who put up with the mists of time that Mama emerges from, to make my husband laugh, to cheer up a friend in need. Life is good. Perhaps the less verbally said the better? My new mantra... "Less IS More" :)

Thanks for reading.

Pav

December's Descended Upon Us So Soon

2011-12-02T11:13:00.010+08:00

Wow, it's December. Where did this year go? I haven't a clue. It's supposed to be a good sign that time passes quickly. You're busy, life is good, exciting things are happening in your life or maybe you're just older and remembering things is just a bit harder! A bit of both for me, I should think!

I do remember some things from this year. I haven't updated my blog for many months now since February. Something major happened that sneaked up on me and when it landed on my lap I was paralyzed for awhile. Unable to express how I felt about it in words for awhile, only sad and heavy tears fell but eventually I managed to deal with it, and things improved, and life went back into a normal state, and my heart soared again.

I have my son's permission to share his story on my blog. My youngest son, only 8 years old, was diagnosed with Crohn's Disease too in early March 2011. Our journey to diagnosis was 5 months of recurrent daily fevers, mouth ulcers, eczema, abdominal pain and bruising on his legs. Finally he was admitted, based on my having Crohn's too, for a barium xray series, colonoscopy and gastroscopy and ultrasound scans. Ultimately they said his case wasn't too serious, but he was underweight and having trouble with absorption in his small intestine. He was put on an 8 week liquid only diet of just a special formula, Modulen, which has some anti inflammatories and some growth factor.

He was extremely determined to succeed and was so amazing at managing his health that everyone was inspired by him. He managed to put on 7 kgs, and all his symptoms disappeared. He's in remission now, and we are desperately hoping he will stay that way. He's able to eat and play and enjoy school once again. We are relieved and just so grateful to see him happy and doing all the normal things 8 year olds do. I'll never take any of those things for granted again. Ever.

Needless to say, getting through the diagnosis was hard on all of us. I especially felt guilty. Tremendous guilt. Did I pass on a faulty gene to my son? Is that why he too has Crohn's? Are my other 3 kids at risk too? I remember when the doctor put my son under anaesthesia for the scopes and I watched as he drifted away and we were told to leave... Tears filled my eyes as I looked at my son's little body on the bed. He's so small. He's just a little boy. Why was he there?! It was my fault!

My husband had stayed up half the night before helping him get his bowels cleansed for the procedure. He drank almost 2 litres of a nasty tasting liquid and went to the bathroom several times so the doctor could get a clear view of his guts. He was so brave. He was so determined. My husband was so patient. I was so exhausted. We'd had a few months of recurrent fevers, and anxiety, night time vigilance and some sleep deprivation... we were tired out ourselves. At diagnosis we'd spent a few days in hospital, waiting for doctors, waiting for tests, unsure what to expect, hoping it wasn't Crohn's, being told it probably was, remaining unconvinced... until he did so well on a liquid diet. Then we knew the truth. His guts needed rest and healing. Indeed, something had been wrong with them. But now he is better. God, please let him stay that way. Please. I recall in a moment of grief telling God that I could bear all the pain and suffering that Crohn's brings, give me extra if need be, just spare my son.

Then I remembered the personal process I had been through of grieving for my lost health and how I stopped asking why me, and decided to find a way to live with this illness, and I knew that my son would have to do the same, and in a strange way I was grateful it was something I could identify with and understand, and help him with, and he could trust that I knew how to help him... and I told myself that out of all this seeming sadness and pain something good would come, whatever that may be. So we moved together to a place of acceptance, and to a common understanding of what it means to live with chronic illness. I am his support, and he is my inspiration.

Once my son started improving I turned my attention to another pressing issue... my weight loss. I had lost 20kgs in 5 months in tandem with my son's illness. While my son had been unwell, I too had been silently slipping away. I ended up spending 2 weeks in hospital fed through a tube inserted into my arm and having my essential minerals boosted and my general well being restored to normalcy. I went home a day before I turned 44 years old, feeling 84 :) but very happy to be back in my personal space and home with my family.

After a battery of tests ranging from cancer to tuberculosis they found that the Crohn's, removed at surgery in Feb, 2010, had come back in a slightly different form. I don't claim to understand it all... but it became imperative that I go on some serious medication. So I opted to try a biological agent called Humira. There was nothing else left in the doctor's arsenal of weapons, I had tried them all.

Humira is injected sub-cutaneously into the abdomen, and each jab cost me S$1000. I had 4 jabs to start, then 1 every 2 weeks or so. After 3 months it became apparent that the jabs weren't working so well, and I needed something else. So we went back on the age old, easy, effective meds with nasty side effects - steroids, in this case prednisone. I also began taking azathioprine, a powerful immunosuppressant. I also take budesonide, a steroid aimed at the terminal ileum where my disease was active prior to surgery. All 3 meds lower my immunity which is supposed to help the Crohn's. All 3 meds have side effects. My eyesight became blurry, so I just got new glasses... I might just be getting older! I am highly photosensitive, and wear sunglasses at home a lot as I struggle with migraines, I am sometimes so hungry I could eat a cow, other times, I feel nausea. Due to the steroids I have bloated up, and people think I am pregnant, and I feel kinda hideous. I am emotionally a bit of a wreck as I cry so easily and am irritable, and though I want to be with people I find them so draining. And tiring. And some days I want to bark at everyone, and bite off somebody's head!! Grrr. :)

I'm tapering off steroids now. My tummy isn't going to do too well... I can tell. But I'll make adjustments and see how it goes. I can't live with these side effects. I know my bones are deteriorating too. Steroids eat them up. I can feel pain in certain bones. I have recurrent infections too, and I'm on and off antibiotics for something or the other. But nothing so seriously debilitating that I cannot function. And so I remain grateful in some way that while I am unwell I am not so unwell... it's all kind of relative right now. Which may not be the best way to deal with life, but hey... when I had surgery I was thankful they only removed 40 cm of my small intestine, and not the whole thing... so relative is as relative does... or some such thing! Life's a box of chocolates, you never know what you 're gonna get! Oooh. that thought makes me hungry! :) (and I do know what I'm gonna get... there's a Kit Kat stashed away somewhere! hahahah!)

One good thing that came out of all this illness was my husband's rethinking his work life, and taking a 6 month sabbatical of sorts from work. He had always wanted to take time off from legal practice, but it was difficult to do that. I think with both our son and I being unwell he truly felt the need to be there for us more fully. It's been simply amazing having his presence, and watching him do things he has always wanted to do. It's been a great help to me, and to the kids to have him with us. I know our lives have been so enriched and we are going to miss him when he goes back to work next year.

One major project this year was moving house. We moved into what I call my pre-final resting place. I am never moving again. They say moving house is as stressful as a death in the family. They, whoever they are, might just be right! I am so exhausted though deliciously so. It's a lovely place, and I am grateful to my husband for his loving thoughtfulness in the many things he arranged for me and the kids. I am blessed to have him in my life.

The end of the year looms. We will ease into 2012 with my eldest son's O levels being the next big thing. In between will be all the small things that make up life. I hope to enjoy each one of them to the best of my ability. I hope to rise above the challenges I face every day with my guts and meds. I hope to be the best I can be in every thing I do. I'm going to try my best and hope for the best and live with whatever happens thereafter. And somehow I hope to cherish and love myself through my many failings.

The year flew by, December's descended upon us so soon. Some sad things happened, some good things happened. I thank God for all that happens in my life. If I believe, truly believe that He is in my life, then I must thank Him for both the good and the bad. That's the way I make sense of what is happening in my life. It keeps me sane. And yes, being sane is helpful. Generally. Usually. Largely :) I do thank Him for everything. I remain grateful. I am blessed.

Thanks for reading!

Pav

Contemplating Choice

2011-02-05T14:22:00.010+08:00

Just last night I was making light of the choices I had open to me... alone, with half the family away and the other half asleep, I thought I might watch a movie on my laptop in bed. Snuggle down, have a nice hot drink and watch something. I like moments like these when the choices are so simple. A funny, silly movie or a weepy, dramatic one? The choice was entirely mine! No need to worry about what anybody else wanted, or what was suitable for everyone. Just me alone in charge of that block of time, free to decide as I wished.

I wish that I had that same freedom of choice in all other areas of my life, but I don't. I can accept many of the situations in my life where my choices are curbed, but the hardest time I have accepting my choices, or the lack of them, is in living with chronic illness. It's just so hard to be up against a rock and a hard place, but that's how I feel.

I've been losing a lot of weight, and in all likelihood am having some sort of poor absorption over the past few months, especially without my gall bladder post surgery. I have endless waves of nausea, acid reflux, and diarrhoea and I am so tired that leaving home sounds exhausting. The doctor doesn't know exactly what's wrong, and I may be having scopes soon. Oh, boo. In addition, I got some kind of flu like thing with phlegmy cough, and so I began a combined dose of 2 powerful antibiotics commonly used for patients with Crohn's Disease... the evil Cipro and the nasty Flagyl.

I hate them both. I HATE, HATE, HATE them both. They hollow you out from the inside. They multiply all your existing symptoms... I can't leave home when I take these drugs. I am either drowsily at my computer, actually fast asleep, watching tv with the kids or stuck in the toilet. There are no other alternatives when I'm on these drugs.

Worse still, they make me feel like an emotional wreck. I don't want to talk to anyone. The thought of a phone conversation exhausts me. The thought of dealing with people tires me out. The very thought of human interaction outside of my family is simply too much. I can manage the kids, and hubby, but anyone else would be too draining. I can write, I can sms, I can "Facebook", but please, I don't want to talk. Talking is tiring. I have to worry about all your needs and wants, and believe me, you have them, even if you don't articulate them... I know they are there. And right now, I can't bear to think of them, I truly can't. So I can't and won't and don't talk.

But then I feel alone. And it is lonely. And it doesn't get any less lonely. Only lonelier. And tears fall so easily it seems that I am living on the edge of a loose tap that flows so many, many times a day. People do or do not understand, depending on their own journeys in life. Can they have the compassion to understand how hard it is to feel this way, and to keep feeling this way day after day and to just keep going simply because to not go on isn't a choice?

Choices are nice when you have them. Choices are even a luxury for many. Shall I eat rice or bread today? I am grateful I can ask that question because I have those options. Shall I take Cipro and Flagyl or just let my body continue to fall apart? I don't have a choice. I have to take the stuff, in the hope that it will help me get better.

I do so hope I get better soon. Someone recently said I was brave and courageous. I'm not, really. I'm just frightened that if I stopped pretending to be I'd collapse inwards and the fake facade that is me would give way and there would be a crumbling mass of flesh and bone with a very tired and worn out soul.

I think Cipro and Flagyl add to depressive feelings... I know how easy it is to feel down when living with chronic illness, and the flu adds to that, for me, and antibiotics just magnifies all of it. I tell myself this so I can go on. It's the Crohn's, it's the flu, it's the antibiotics. It isn't me. Really, I'm not a weepy mass of quivering flesh who finds life exhausting and would like nothing more than to sleep forever and never have to talk to a single soul. That's not the real me. The real me is smiley, cheerful, witty, sociable, lively... only through no choice of my own has the real me been hidden away for a season. Through no choice of my own have I evolved into what I am and feel today... but the memory of what I was, and the hope of what I can be keeps me going, even as I try to love myself through what I am now.

Hopefully the sun will come out and the clouds will clear... soon.

Thanks for reading.

Pav

Legacies in Life

2011-01-10T10:58:00.005+08:00

When I have had my hardest struggles with chronic illness I have often wondered what my children will learn from my life experiences. I wonder what legacies I am leaving them, and I hope they are learning good things. Hopefully things like strength in adversity, that it's okay to have moments of weakness and to cry, that one can still live a purposeful and meaning filled life with a weakened body, and that life in itself is to be cherished no matter what our physical state may be.

This past weekend we celebrated my Mum's 70th birthday in Kuala Lumpur. As I prepared for the gathering, I found my thoughts wandering... I wanted to make a little speech about some of my Mum's best qualities, and immediately several ideas came to me. In the end, I focussed on her generosity, hospitality and kindness. I realized that so many of us at her birthday dinner had experienced her love and kindness, had partaken of her lovingly prepared meals, had visited her home and found love and acceptance therein.

At the dinner, my children sat listening to my speech, and I knew that they would remember what I had said for some time. I knew also that the day would come when they might have to distill their own thoughts about me. I wondered what they would say, and I know that every day we live now is a process of building memories... some good, some inevitably not so good. Would my children perceive me as being chronically ill, or rising above illness? I want them to think of me as someone who fought the good fight, and who managed to survive no matter what life threw me.

My Mum had a hard life in many ways, but she's a survivor. God has blessed her. She always says her children are her best gifts from God, but I think she is the best gift God gave me. I don't always feel that way, but I know deep down in my heart that God knew the kind of Mum I needed, and blessed me with just the right one. I am truly grateful.

Mums and their children, children and their Mums.... a never ending cycle of relationships affecting each other through the generations. Inescapable and inexplicable. A real mystery. A bond physically severed at birth and yet never really severed ever. Two hearts intertwined, and lives forever bound even as one person, the child, seeks to break away, and the other person, the mother, learns to let go. Love and hurt. Joy and pain. All found, all bound, in that one relationship, a life time legacy of love.

Thank you, Mum, for your loving legacy... I like to think I inherited some of your generosity and hospitality, your kindness, and love for books. I do hope it all rubs off on my kids too. May they learn to give freely of themselves, and in so doing create more loving, living legacies to pass on to their own children.

I am blessed.

Thanks for reading.

Pav

My Reason for the Season

2010-12-23T13:07:00.003+08:00

It's Christmas time once again, and the New Year is almost upon us. That lovely time of the year when the first school term winds down, Papa takes time off work, and we all hang out together remembering the birth of Jesus as we enjoy our Christmas tree lights and plan gifts and get excited about the holidays, and the impending new year.

Very soon I shall bid goodbye to 2010 and welcome all the new challenges of 2011. I asked myself what those challenges were... and then I realized that in essence there are no new challenges, just the same old ones that carry forward through the years, at least that's how it works for me. There are no new resolutions, just the same ones that have plagued me for some time now.

Hardly cause to celebrate, I know. The fact that my imperfections haven't gone away. The fact that some of the things that troubled me 5, or 10 years ago still trouble me today. The fact that I might just grow really old and keel over the same person, having never really changed much over time.

But what's so bad about that anyway? I'm 43 years old. I've lived half my life. This old dog isn't learning any new tricks. I don't even know if I even want to learn any new tricks. Half the time I just want to roll over and play dead because I'm just so bone tired and weary and fed up of life, and the world seems like a depressing place with terrible injustice and poverty plaguing millions... but I digress. This is supposed to be about me :)

I think that for me this year, 2010, I want to thank God for me. Yes, for plain ol' me. For the rough edges, the imperfections, the failings, the weaknesses. I am grateful. Yes, I am indeed. Without all of them in my life I wouldn't need the grace of God or His love and mercy to get me through the day. I would be so self reliant I wouldn't need anyone in my life at all. But the truth is I really do need God, and people, and the realization that I do reminds me that I am human.

I am just so incredibly human. Frail. Fragile. Feeble. On so many levels. Like baby Jesus in the nativity scene, wrapped in swaddling clothes. And yet within him lay immense love, great hope and tremendous peace. Can one hold both joy and sorrow and not break? Apparently, one can.

Sometimes I feel so conflicted, and a little lost with my feelings. I sincerely intend to convey goodwill and charity and for love to emanate from my very pores, but that doesn't always happen. I know that many times I am just too tired to be nice. I want to be left alone. People exhaust me and tire me beyond belief, and yet even if they have no expectations of me, I have many expectations of myself.

Therein lies the trouble. I want to be many things that I am not always able to be. I feel inadequate. I feel guilty. I feel saddened. But at the heart of all that goes on this season, the very root of it all is truly love. The love of God shed abroad in our hearts and our lives through the gift of his Son. The love of family as we draw close and cherish each other and make our time special in our own way. The love of friends who share our lives and their love with us, and who bless us as we bless them.

The very love of God that compels me to love myself, just the way I am, despite whatever I may think of myself. The love of God that says to me that He loves me no matter what and nothing can ever separate me from the love of God. I am grateful, I am glad. I am me.

God's love. My reason for the season.

Have a Blessed Christmas, and a Very Happy New Year!

Thanks for reading.

Pav

Please God, Spare My Kids

2010-11-11T18:52:00.007+08:00

Some strange gastro bug got my 3 sons this week. The youngest had fever, so he stayed home, but the older boys, being teenagers, happily soldiered on to school until it was just too exhausting, and I could tell they really needed a rest. No fever, but stay home, please. No fun having tummy issues at school. No fun at all.

Having been diagnosed with Crohn's Disease in my early 30's I remain grateful that I got through school and Uni and all the challenges therein before I had to deal with chronic illness. Now that I have 4 children I am sometimes plagued by fears of their getting Crohn's. There is a genetic link to the disease. As with many other diseases, if a parent has it your own chances are increased, though with Inflammatory Bowel Disease the risk is higher if a sibling has it.

So every abdominal pain, every episode of food poisoning, every nausea incident, every one of those runny belly moments brings a stab of fear to my heart. I worry if it is something more serious than a passing bug. I want details of food intake, pain location, stool texture, quantity and frequency... my kids must find my interrogations annoying but they don't often object. I do think they see a passing shadow of worry on my face as I try to make light of it... I can't help worrying.

What causes Crohn's remains a mystery despite years of medical research. Some of the reasons mooted include bacterial infection that activates the immune system into overdrive, and it then never resets itself, and the body attacks it's own self. I cannot remember exposure to any particular bacteria, neither could I have shielded myself entirely. I refuse to be overly protective of my kids, in some fear of them catching a bug that could cause problems. Apart from general decent hygiene, and not eating poorly cooked food, especially meat, I don't insist that they eat overly sterile food either. Their home environment is reasonably clean but not too clean... I do so miss our home in Seletar Camp where the kids roamed the garden barefoot, tracking soil and mud into the house, playing for hours outdoors, building their immune systems in tandem with nature.

Some say a change in environment can trigger an immune response. I know I moved country from Malaysia to Singapore and a few years later Crohn's crept into my life. Would I have been well if I'd stayed home in KL forever? I don't know. Can I insist that my kids stay in Singapore for the rest of their lives so as to avoid problems? No, I can't. In fact, I encourage them to travel, and they've traveled, some more than others, to Malaysia, Indonesia, India, Nepal, Switzerland, Australia, New Zealand, Italy, Spain, the UK, Thailand, South Africa etc. I want them to see the world, the not so clean parts of it, as well as the highly sanitized portions. I want them to appreciate what they have, as they see others with far less. I want them to see their own place in a larger global picture. I suspect they will study abroad and eventually live abroad too. Go explore the world, find your place in it and thrive. I hope early exposure to new and different environments will toughen up their immune systems.

Some argue that a change to a largely western diet of fast food and high sugar content has caused problems like Crohn's. I never ate much fast food or sugar prior to getting Crohn's, so I don't think diet played a role in my case. I exercised a fair bit, had a decent metabolic rate and was well within my BMI. Now that I have Crohn's I have to be extra careful, because some things make it worse. So sugar laden stuff isn't easily available in our house, and I try to limit my kids' intake. Not entirely, because I don't think that's the best way, but it's rationed.

What do I tell my kids? I do tell them to make healthy choices, but it is not always possible, especially at school, and yes, they love pizza, and the occasional trip to MacD's. I ration these out, and I try to focus on freshly cooked food, and fruits and vegetables in decent doses. Will they always make the best dietary choices once they leave home? I don't know. I hope so, but they will have to take ownership of their own health some day, and I hope they will remember what I have tried to impress upon them.

Stress is supposed to affect the immune system and can cause problems too...but which one of us can live a stress free life in this world? I am told that stress is bad for me. Yes, I know it is, and yet where can I flee from it in this day and age? It surrounds me. It surrounds my kids. I try to reduce stress, for all of us, but some stress is really intrinsically needed for without it we might never accomplish much. So how to manage stress and make it work for you...these are skills for all of us to learn, alongside skills that allow us to relax and let go, to achieve that elusive balance that many spend their whole lives searching out.

What I can do for for my kids now is to allow them to live without fear, and to let them enjoy their lives, not worrying about things truly beyond their control. Who knows why and how I got Crohn's, but I pray my kids will be spared. I know what it means to live with this disease, and I wouldn't wish it on my enemies. Well, I can't think of any enemies... :)

Seriously though, go forth and live, without fear. I wish you well, always. And yes, please God, spare my kids.

Thanks for reading,

pav

A String of Pearls

2010-10-26T14:22:00.005+08:00

Some days you wake up and you just know in your heart that today is going to be a fragile day. A day where things might shatter so easily because they all seem barely held together. I, myself, me... barely are my pearls strung together for the day before I feel tension in the string, and it's entirely possible that the string will snap and today all my pearls will fall to the ground and roll away, much to my distress. Loosen the string, lest it snap. Relax. Breathe deeply. Exhale. Repeat.

On days when fragility seems to overwhelm me I hide away. I am not fit for public consumption. Lest I turn a stomach, upset a mind or cause unhappiness in some way, I choose to be alone. Alone in the knowledge that this way I will hurt no one, this way no one will hurt me; this way the day will pass, and tomorrow will be a fresh start.

Today was a fragile day but I could not hide away. I had to meet people outside of home, I had to talk with strangers, I had to deal with life, full on in the face despite my wanting to be alone. Happily I managed it, but at a cost to myself. I hope I left everyone happy in my wake, but I am not happy. I am exhausted, drained, lifeless. I am also saddened. What saddens me I do not really know, but contact with people exhausted me today, and any surplus I had saved for a rainy day is thoroughly used up. I have nothing left to give, and nothing for myself, and that makes me resentful. I resent being resentful even. :)

Thankfully, tomorrow I do not need to face anyone outside of home/family. Thankfully, tomorrow I can gather my pearls and put them on, one by one in peace, by myself. A string of pearls reflecting who I am, representing my day, possibly even my life. Each pearl a jewel discovered through some struggle, some suffering, some pain. Each pearl precious in itself, and together a combination of many colours and shades, yet each perfectly round. A string of pearls I work on everyday, and on some days I make more progress than other days, yet each day I celebrate them. I remember them. I lovingly remind myself of them and of what they mean to me, and what I am to myself and to others, and I am comforted.

Thanks for reading.

Pav

Facing the Future Unforetold

2010-10-18T19:18:00.006+08:00

Every now and then the thought comes to all of us...what if my life had been different? We wonder how our lives might be now had we taken a different path, or if events in our lives had happened differently. It's a very normal thing to think about, and isn't really full blown regret...maybe just a tinge of regret with remorse or a sense of sorrow at the past that has led to the present, and uncertainty about the future.

All of this can be magnified many times over for people who live with chronic illness, especially when illness and disability has visited them through no fault of their own. Then it is not so much the road not taken, or a decision made that turned bad or a matter of poor choices, but simply something that happened to them. Out of the blue, disease came upon them. It sneaked up and decided to pounce, and gobbled up a life. But rejoice, people say, that you are alive! Yes, you don't have cancer, be grateful!

And so the chronically ill remind themselves that they have so much to be grateful for, despite all that they have lost. The days, weeks, months, even years, eaten away by locusts, if you like... munched up by pain and trauma, turmoil and tears... pain so visceral and real that only someone else who has walked the same path of suffering can understand. Lost time that can never return. Time spent curled up in agony, hours spent trying to cope and make sense of what is essentially senseless... disease that comes out of nowhere and devours you bit by bit from the inside, leaving you hollowed out. Time that could have been better spent doing things more meaningful, investing in one's happiness, and the happiness of others, loved ones who depend on us, who need us, and yet for whom some days, we cannot be there. We are there physically, but trapped in a world of pain so acute, so sharp, so overwhelming that nothing else can penetrate our thoughts and feelings and we are numb to all around us.

But yes, we have plenty to be grateful for...for life and for love, and if we have these, then truly we are blessed. And so we swallow the pain, we bite back the tears, we pull ourselves up, we face the world, and in so doing we learn to forgive ourselves our shortcomings, our failures, our lack of being there for others, and we try to deal with the guilt. The guilt that damns us as we struggle on each day, the guilt that would pull us back into the quicksand of flooding thoughts that drown out the good in us and tells us we have failed. The guilt, that if left unchallenged would kill our soul and take away that last lingering hope within us, that perhaps something truly good and beautiful can come from our lives.

Yes, we have plenty to be grateful for each and every day. Each day anew. Each day afresh. Each day a chance to start over. Each day to thank God for life and love. To forgive ourselves our imperfect past, and to face the future unforetold... God grant us grace to face each day with Your strength, for we cannot, dare not, will not, contemplate doing it on our own. We would fail. And surely for that gift of grace alone, if not for anything else, I am grateful. Thank you, God. For life, and for love.

Thanks for reading.

Pav

Cocooned in a Coma

2010-08-22T13:20:00.009+08:00

For some weeks now I have been thinking of my late father's passing. He passed away on 26th September 2009 at the age of 75, and as the first anniversary comes round I find myself thinking about him a lot more. Sometimes late at night I remember the events that led to his demise, the memories are so real and fresh they bring tears, and I feel myself awash with grief and sadness again.

My father, Harbhajan Singh Gill, went to get his pacemaker checked at the National Heart Institute in Kuala Lumpur on August 25th. He loved that place, and having retired as a senior civil servant, he especially loved the benefits he received and believed in the care as being top notch. He certainly wouldn't have settled for anything less. :) He had had a triple bypass done there too, and a pacemaker inserted, and used to joke with us about his "ticker" and how it would give up on him some day.

While waiting for his check up he actually had a heart attack of some kind and died. By the time this was discovered and he was revived, almost 10 minutes had elapsed, and so my father's brain, having been starved of oxygen, was effectively dead. Because the resuscitation team had their duty to perform, his heart was revived but he was in a comatose state. I found out about this 2 days later, when my father's second wife told my brother in KL, and he called me in Singapore, and my sister in Melbourne. We began our respective journeys to KL with very heavy hearts, unsure of what we would find.

My parents, having separated when I was very young, had never really gotten along, and I was raised practically singlehandedly by my mother. Over the years I had had several encounters with my father in which some healing had occurred, the kind of healing that a child requires when knowing that a parent is unable to love them, for whatever reasons...religious differences, acrimonious relationships, memories of the past, pride...whatever the reasons were, I received very little love from my father, but I knew deep down in my own heart that I loved him.

As I journeyed to KL I found myself wondering about whether my father would be able to communicate with me. Would I be able to speak with him, and square the past, or would he be slipping away and was the ultimate end, death, imminent? When I got to KL I went to see him, and discovered that he was well and truly cocooned in a coma. The kind of state of limbo where his body was being kept going by various machines but his brain was non-functional. What conversation could I hope to have with him then? It became a monologue of sorts.

It was also an emotional roller coaster of grief and sadness, feelings long welled up and hidden away came to the fore, and for the first couple of weeks my every moment by his bedside was one of tears. Heavy, fat tears that fell so fast I could not stop them, neither did I try, because deep down inside I knew that I had to let them out. Whatever little time I was given by the ICU staff, by the demands of other relatives and friends and the knowledge that I was, in essence, an outsider...whatever little time I had with him was time that I used to tell him I loved him, to thank him for the gift of life as my father, to bless him with peace, and to say "I forgive you, Pa, please forgive me."

My father remained in a coma for 32 days, passing away eventually on 26th September, the day after I left KL and returned to Singapore to be with my family. I watched him over 32 days deteriorate from a fairly muscular man to one that had hollowed cheeks and poor muscle tone, swollen hands and feet as his kidneys failed and an opportunistic bacterial infection took over. How sad to watch someone wither away. I wondered then if it is better to have someone go suddenly and then deal with the grief of that abrupt departure, or to watch someone go slowly, feeling tortured in the process, imagining that their loved one is also being tortured, wondering whether to hope for a quick end to suffering on all sides, or to soldier on bravely come what may, even if the comatose state were to last months and years.

The thought crossed my mind that perhaps in this last stage of his life I would be given the chance to look after him and be the doting daughter that circumstances had not allowed me to be. In some idealistic rosy eyed moment I imagined myself lovingly tending him through the last few years of his life in a coma...but then reality intruded, in the form of my sensible family members who told me I wasn't well enough to undertake such a job, and it wasn't for me to decide these things anyway. It was for my father's wife to decide on his care. And the questions about his care troubled us all a fair bit. The thought proved daunting for some, and rightly so. The task of looking after someone in that condition is not an easy one. In the end, it did not matter because my father passed away without leaving the ICU.

I know being in a coma isn't quite a "chronic" condition in the sense that say, diabetes, or Crohn's disease or SLE is...but I wonder what it's like to be cocooned in a coma for months and years, seemingly perpetually asleep, and never in hope of awakening. Being transformed over time, slowly deteriorating into a state of being the living dead before the heart gives out and one is released into death, and the life hereafter as one believes. What is it really like to be in a coma? I hope never to find out.

While the doctors told us that brain function tests showed no brain activity, and they told us he couldn't feel anything, I never really believed that. While they couldn't quite say with certainty whether he heard us or not, they told us he could not respond. I never really believed that he couldn't hear us, and as for response, once while I read to him his eyes opened and he looked right at me...I have to say it gave me a fright! This was also explained away, but I didn't believe it. I didn't want to believe that it was pointless, I guess.

In some selfish way I am grateful for the 32 days that my father spent in a coma, because it gave all of us in the family time to come to terms with his impending death. I was able to be by his bedside, and I spoke to him, I sang to him, and I read to him, believing that he could hear me. Perhaps his auditory senses weren't functioning because his brain was gone, but I believe that there is more to man than just the physical. I believe there is the soul/spirit man too. That part that lives on when the physical body is gone. I like to think that part of him was listening. I like to think that part of him responded. I like to think it all meant something to him. And yes, it meant a lot to me. Perhaps it was all something I conjured up because I needed to believe that he knew how much I cared for him. But I don't think that in itself is wrong. People who say "you did it for yourself" miss the point...yes, I needed it too. Possibly a bit more than my dying father did, because I continue to live, and the living need hope, and healing, love and peace, a little more than those who leave this world.

I do hope and pray that my father received all of that from me as I watched over him. I do hope he is in a happy place. I pray for that. I do remember him with sadness, and grief, and longing, and pain, and the gamut of emotions that make us human. I am working towards remembering him with joy. In the early days after he went into a coma, and after his passing, the question that plagued me was "Pa, did you love me?" Months later, as I prepare for a simple memorial for his first anniversary on 26th September, I find myself asking "Did I love you, Pa?" and as I move from one question to the other, I am finding further closure and healing as the answers are "Yes" and "Yes". Yes, he loved me, and I loved him. I can let the memories of the past rest in peace, I can live in peace, and Pa, wherever you are, peace and love to you too.

Thanks for reading,

Pav

A Stroke of Bad Luck

2010-08-07T10:20:00.005+08:00

Last night, as my husband and I were entering the lift to our apartment, we found ourselves with some of our fellow residents. A family of 4 was with us, and my husband began a conversation with them. Yes, we're the sort of folks who like to talk to our neighbours, and fortunately our neighbours don't seem to mind. Not too sure what choice they have stuck in there with us but it's just our way of being civilized. Much nicer than staring into space avoiding eye contact.

This family was one that I remembered from the time we'd first moved into our apartment 15 years ago. We left and lived elsewhere for about 6 years before returning here, and have found that while some people have moved on, there are still some others who have remained in the condominium, and so they are our familiar faces, and the friendly ones who recognize us and who are happy to chat with us.

As my husband chatted I looked at the family, and smiled politely. The mother was doing the talking, and the daughter responded to questions, but the man and his son were quiet. Toward the end of our brief conversation, during which time I became animated upon discovering that the daughter was studying English Literature, the father looked at me and in that moment of eye contact between us, I learnt something new about him.

His eyes were red rimmed and watery, and his gaze was weak, and as I looked at him I took in the shriveled right hand that was visible to me, and the support that his son gave him...and it dawned on me that he had had a stroke. Somewhere in the interval between the time we left our condo, and the time we returned, the man that I remembered as being a lovely, chirpy, energetic, sweet man had undergone a transformation so severe that he would never be the same again.

A stroke is a terrible thing that can befall anyone, young or old. Somehow, blood supply to the brain is interrupted or disturbed and brain function suffers. Sometimes the damage to the brain is so severe that the person can die. Often, the damage leaves a person disabled to some degree. Some can walk, and eat, and speak a little after therapy, many can barely manage basic functions. While the stroke itself is fairly brief, it's consequences are long lasting and permanent. Persons with strokes face permanent disability, and must then live trapped in damaged bodies that require the help and care of others to some degree. Independence, something so prized by us all, goes out the window, and the stroke victim must rely on others for a range of things, depending on the severity of the stroke. Personal dignity and space need to be reinterpreted to allow for the intervention of doctors, nurses, therapists, and family members who will assist to help make life livable, hard as that may be to imagine.

Uncle, as I call him, could walk with some help, he looked like he could function a fair bit on his own, but in the look that we exchanged, I realized that he could not connect verbally with me. Perhaps he might have said something eventually, but he could not participate in the conversation at that point, he could not share his views, or comment on someone else's. Whatever was meant to have passed between us remained unsaid, lost in the ether where thoughts unvoiced and hopes unheard linger, never to emerge.

We reached our floor, and wished everyone a good weekend and happy National Day and exited the lift. Because the wife was the vocal one, our attention was drawn to her, and as the doors closed it was her face that I saw. She seemed tired. Her daughter had looked tired too. It was a tired family. And yet, there was a spark of something about them. They had come home together as a family from somewhere...I'm not sure where, but they had driven home, and Uncle had been with them, and even though they looked tired they were together.

That togetherness struck me. In the face of adversity, especially the adversity of illness, families either gel together, or fall apart. Illness makes or breaks them. There's nothing quite like chronic illness to bring the substance of a family to the fore. In the cauldron of suffering, pain, tears and frustration, the essence of each individual is tested and purified, and the dross rises up. The selfishness, the irritability, the anger...everything that shows up the lack of love within each of us is drawn out of us. Do we skim it away each day and begin anew the task of sacrificial love, or do we drown in the dross and find ourselves paralyzed by our weaknesses? This then is the challenge of life with imperfection staring us in the face. Imperfection in others, and imperfection in ourselves.

Uncle and his family have their act together, at least it seemed so to me. A stroke of bad luck befell them, but I think they will pull through. I do hope that my next encounter with him will be different. I hope that we will have a little more time together. I hope to hold his hand and look him in the eye and in that glance say "Hello". I hope to have the grace and compassion to know if it's better to leave him alone. I hope and pray that Uncle's remaining years bring him more joy than sadness, and that in the end, he will know that whatever his body has become, his was a life worth living.

Thanks for reading.

Pav

My Soul Sang, My Spirit Soared

2010-07-25T13:09:00.003+08:00

Yesterday was the best Saturday I have had in ages. After almost a year's absence I made it back to the St Francis Xavier Choir (SFx Choir) at St Ignatius Church. It's a choir of folks from the Philippines; men and women who work in Singapore, and who have amazing gifts, talents and a love for music and singing. They opened their hearts to me early last year and I joined them for a few sessions of singing at Mass on Saturdays, preceded by a session of choir practice each time.

The last time I sang with them was 22nd August 2009. Just 5 days after that I received news that my father was in a coma following a heart attack in Kuala Lumpur. I spend the next few weeks commuting between KL and Singapore, until he passed away on 26th September. The grief and pain I felt was so deep, that I couldn't bring myself to sing for a long time, and I barely made it to church, because I kept crying and the memories of growing up without a father, and living through divorce meant that there was a lot of healing that I had to go through. I told myself I needed time to heal, and after a few months I felt my soul had healed, but then my physical body fell apart.

After weeks of not being able to eat and a few hospital stays I finally had surgery, the details of which are described elsewhere in my blog. All through this time I didn't sing in the Choir neither did I really make it to church regularly. I hardly went because I was so tired. Leaving home was an effort, talking with people drained me, and I hardly sang. It's hard to sing when you don't eat. It's hard to sing when you're in pain. It's hard to sing of God's love and mercy when you're battling depression. Tears were never far from me, and while the pain of my father's passing faded into the background, the grief I felt at my own situation came to the fore...and so one pain replaced another. And again I told myself that I needed time to heal, and so I determined to let that time pass, and I knew in my heart that when I was well I would know it.

Yesterday I returned to the Choir. During the rehearsal we sang a few songs I was unfamiliar with, but the beauty of this Choir is that people like me : a rusty soprano past her prime, an absentee getting her life back on track, being chronically ill and constantly overwhelmed by life...someone like me can just come in and be transported to another realm. I felt like my very soul sang and my spirit soared, on the wings of eagles. I, a little eaglet, soared on the wings of giant eagles, the Choir members who welcomed me back into their group, and somehow my voice managed to come out and the parts that I felt were wobbly for me somehow just blended in...I don't know how or when it happened but it simply did.

During the practice I found myself in tears when we sang a beautiful song : Take and Receive. Surreptitiously wiping tears and dabbing my nose, and fobbing off the potential Drama Mama scene of my having a complete emotional collapse and wailing my guts out took some self control. :) The words of the song moved me deeply. Here they are :

TAKE AND RECEIVE

Take and receive, O Lord my liberty

Take all my will, my mind, my memory;

All things I hold and all I own are Thine,

Thine was the gift, to Thee I all resign.

Do Thou direct and govern all and sway,

Do what Thou wilt command and I obey:

Only Thy grace, Thy love on me bestow,

These make me rich, all else will I forego.

What a truly lovely song. It touched me on so many levels. My battlefield is my mind, and to some extent my memory. I tend to dwell on sadness and melancholy is never far...Sometimes my memory seems to vanish altogether, or at the very least I remember sad things...when surely my life has so much goodness and loveliness and blessings that should make me happy. And so this song reminded me to give all of who I am to God. And tears came to me when I sang the verse.

I cry easily. This is certainly true. Sometimes it doesn't take much to get me going. A scene of suffering and starvation on tv, or reading about the loss of a child, or feeling frustration...tears come quickly. Unbidden, and often unhidden. But that's just me. I am easily moved and overly sensitive. Yesterday I managed to get my tears under control, but I knew that very moment was special for me. And that feeling of it being special stayed with me throughout Mass.

Special because I had finally made my way back to the Choir, special because the wonderful Choir members were so welcoming and loving despite my having been far less loving in the past, special because I felt God's presence in the singing, and in the Mass, special because He touched my inner being. My soul, my spirit...when I left I felt renewed. Only God can do that. I felt humbled and also privileged, that in one special day, yesterday, God met with me and spoke to me, and I with Him. And He used the Choir as His Voice.

Thanks for reading :)

Pav

An Extraordinary Escape

2010-06-07T03:24:00.006+08:00

If you live with any chronic illness that gives you pain and keeps you home on occasion, or in hospital for extended periods of time...plan to get away. Create a plan to escape somewhere. If you're bed bound, and hooked up to wires and tubes, try to go for a short walk around your hospital ward, and lengthen the distance each day. If you're in a flare up, and feverish, or in the case of Crohn's, having abdominal pain and are afraid to leave home for long...plan something short. Walk down to the shops, find out where the toilets are, and get going, even if it's slow steps. If you're in remission, plan a trip over a weekend or longer, with a loved one, or even alone...but get away from home, from work, from the limits of your world which impinge on you when you are ill. Plan an extraordinary escape, expand your horizons!

While in hospital 4 months ago awaiting my first bowel resection, appendectomy and gall bladder removal, I fantasized about the things I wanted to do when I was better. I made a wishlist of sorts. I wanted to eat a simple meal at my favourite Indian restaurant. I wanted to SCUBA dive again. I wanted to visit Rome with my husband again. I wanted to get back to my PhD and get out to meeting with colleagues and friends again.

It seemed so selfish...a list of "I wants", and I felt a little childish, but it gave me hope. Hope that some day soon I would actually get out of hospital and do the things "I wanted" to do. If you don't want anything, you aren't very likely to achieve anything...and as someone who lives with chronic illness, it's the hope that keeps the me going. The hope that soon, maybe next week, maybe next month, maybe next year, I WILL do the things I want to do. All this is in addition, or over and above, the things I must do, the obligatory things that one cannot run away from. These are the duties that one does, that are also enjoyed, but somehow not as much as the items on a wish list.

The non-obligatory wish list is the part that feeds the soul, filled with activities we choose to do because they mean something significant to us and are things we don't ordinarily do. They signify the unusual, the unique, the special, the extraordinary, the fanciful, the imaginative, the creative...the things that we do from time to time to break the monotony of the needful.

And so it was with a bounce in my step and a thrill in my heart that I marched off to Rome with my husband in late May for 8 nights. His workload suddenly cleared, and he knew that I had been dreaming of going back to Rome, having last visited in 2005. Plans were quickly made, and we had a very special time revisiting old haunts, discovering new treasures, and just getting away by ourselves without the kids. Having been through a lot earlier this year the time away was important for me as a milestone for my own recovery and journey with chronic illness and I felt overjoyed that I could make it really come true.

For the two of us the time away as a couple was magical, and romantic and simply so special. We rediscovered our love for each other...not that it had ever gone away, but perhaps it had been overshadowed by busy work schedules, long hospital stays, surgery, recovery, the needs of the children, the needs of the urgent triumphing over the needs of the important... and so we made time for the truly important in our marriage...the two of us.

At the end of the day, I like to think that no matter where we had gone, just the time together would have have been wonderful. I was blessed to be able to get away to Rome. The beauty of Rome for me is in her museums and the very sense of antiquity that permeates the entire city. Also, as a Catholic, praying in the chapels in St Peter's Basilica and attending Mass there moved me to tears. I sobbed tears of gratitude for the success of my surgery, I thanked God for all the many, many, good things He has blessed me with, and I also thanked Him for the bad...for some reason I felt that I had to say that. Thank you God for the bad, for all things that have happened to me, for the incurable Crohn's, for the painful and traumatic surgery, for my father's passing, for the pains and sorrows of the past - I thanked God for them all even as I thanked Him for my wonderful husband and my four lovely children.

I felt a peace in my soul. Perhaps I could have said those words and had that moment right here in my living room, but for some reason being there, in that special place in that special time with my special someone...it happened then, and it was...well, special. Words cannot quite describe it adequately. I won't soon forget it though. As I move on to other adventures, I will remember my prayer and the sense I had of an encounter. I am glad I had a visit to Rome on my wishlist.

The next item on my wishlist will involve another journey, but probably somewhere close by. Now to dream of my next SCUBA dive...when and where...and when I do get in the water, and when I am transported to the underwater world that I love so much I will know that I am living my life the way I want to...peppering the mundane with an extraordinary escape.

Thanks for reading!

Pav

The Support of Similar Suffering

2010-05-24T18:11:00.008+08:00

Last Saturday, 22nd May, the Inflammatory Bowel Disease (IBD) Support Group met at a hospital here and I managed to attend despite a rather busy weekend. I am so glad that I made it, because once again, I am reminded of the support that one can obtain from people who suffer in a similar manner.

Patients with Crohn's Disease and Ulcerative Colitis meet once every few months, usually in a hospital setting, organised by one of the Nurse Clinicians who is dedicated to assisting patients gain support from one another. At this last meeting we had a dietician talk about diet during flare ups, and during remission, and making sure patients obtain sufficient nutrition despite their intestinal and digestive problems. A psychiatrist spoke about coping with IBD, and touched on the role of the psychiatrist in helping IBD patients.

While the talks are always useful and informative, and the Q and A sessions lively, the best part of the meeting for me is always the opportunity to meet other patients in the same boat. I saw familiar faces from previous meetings, including one lady who's had 11 surgeries, and I made new friends, including folks who have just moved to Singapore, a young lady who hasn't been definitely diagnosed as yet, and a young man doing his reservist stint in the army.

So varied is the insidious reach of IBD that people from all walks of life can be affected by it. At each meeting I encounter new patients, and I sometimes wonder how they personally cope with this illness that wrecks a life and causes so much pain and makes the simple task of eating a meal a dreadful nightmare on many occasions for so many.

This same question fuels my part time PhD. How do patients in Singapore live with IBD? How does it affect them? How do they cope with it? And how can we help them? Through in-depth interviews with patients I hope to answer some of these questions, discover more questions, and perhaps provide some answers and insight to anyone who is interested.

My PhD keeps threatening to be derailed...last year was so difficult for me with my father's illness and subsequent passing, and then towards the end of the year I became quite ill, culminating in surgery earlier this year. I have thought of giving up a few times... but each time I meet new patients with IBD I feel encouraged to go on because I admire their courage in the face of great difficulty.

I know firsthand the difficulties they face, some of which are severe, and others more moderate or even mild...but all of them must face challenges, must make adjustments, must grieve the loss of their health, must accept the incurable, must live with often debilitating side effects from medications, must learn to love themselves and continue living life to the fullest...while they still can.

After the Support Group meeting I went to a wake. A very close friend's father had passed away earlier in the day. I paid my respects to the family, and planned to attend the funeral the next evening. I made it there with my husband, and we watched as "Uncle" was sent on his final journey. The Hindu funeral is filled with many symbolically laden moments, and as the earthen pot was shattered, and Uncle's link with this earthly world broken, I felt the loud sound resonate within me...farewell to Uncle, and yes, before I know it, farewell to me too.

Some day I too will cross over into the spiritual world, some day all of us will make that journey. I listened to the eulogies by relatives, and I realized that Uncle had lived his life to the fullest as only he knew how to, and would always be remembered as someone who was a fighter.

Some day someone may stand to recount my days in a eulogy, and hopefully someone will say that no matter what life threw my way, I managed to survive it. No matter what IBD did to me, I managed to survive it. Perhaps more than just survive, perhaps I actually lived. Really lived.

Before we know it, we'll be gone, like the petals of a fragile flower perishing in the heat of the noonday sun. But before they perish they are radiant, they give beauty, they have a fragrance of sweetness that permeates the very air...they are a blessing. Seek the support of those with similar sufferings.. whatever those sufferings may be...so we can bless our fellow brethren, and be blessed in return. Live, love, laugh. And yes, cry. It's all part of being alive.

Thanks for reading,

Pav

Andrew Johnston - 'Make Me A Channel Of Your Peace' NEW Studio Performance

2010-05-14T14:25:00.000+08:00

My Anthem : Bon Jovi - "It's My Life"

2010-05-12T15:26:00.002+08:00

I Remember, Yet I Choose Also to Forget

2010-05-11T15:07:00.007+08:00

Inspired by "Remembrance is a form of meeting, Forgetfulness is a form of freedom" : from "Sand and Foam" by Khalil Gibran, and events in my life.

Words were said that hurt me deeply, words I didn't deserve,

Words that burnt into my mind, and burnt away my love.

I was sad, and broken hearted, and my heart was grasped by pain,
I did not know how to break free, though I tried again and again.

As time passed I thought my pain would lessen and I could forgive,
But it took so long, time seemed to crawl and I barely managed to live.

And then this pain faded away as another took its place,
A more urgent need, a pressing pain clamouring for space.

I gave it rein, and let it work its way into my heart,
I dealt with death and the past as my father did depart.

I chose to put my prior pain aside and open up my soul,
I hoped to deal with the past and slowly become whole.

It seemed to happen, in smallish starts I felt my pain diminish,
And yet the healing and restoration never really finished.

My heart still broken, my soul burdened, my body felt defeat,
I spiralled down into a state of not being able to eat.

As days passed by I had fewer options and finally just the one,
And so it was that for me the unthinkable was done.

I lay on the table asleep with parts of me cut away and seized,
They removed the parts in me that were useless and diseased.

And yet I knew my heart and soul, my very inner being,
Also had parts that needed pruning and mending and healing.

As I mended you came to me, your hand reached out to mine,
I felt the love and the care, I knew we would be fine.

There was no need for words and lengthy recriminations,
I felt the love, forgiveness flowed, without explanations.

A burden fell away from me, I felt freedom anew,
All heaviness was gone, my heart felt like it flew.

And from that day we began again, you and I, my friend,
And so I hope to continue until the very end.

Words caused my heart to break, and pain flooded in,
Silence then mended it back again and joy dwells within.

I chose to forgive, I released my hurt and pain,
And in so doing I have found my friend again.

My prayer is that all will be well and friendship eternal be,
Despite the troubles and the woes of life for you and for me.

Pavitar Kaur Gill
21/04/10

An "Ode" to the Scone

2010-05-07T08:31:00.001+08:00

Here's a fun poem I wrote last year about scones. I love writing "odes"

to just about anything that takes my fancy :)

AN "ODE" TO THE SCONE

I sliced you in half, but you did not resist,
My knife slicing through you in one swift twist.
I lovingly buttered you, covered you in jam and cream,
Throughout all this you did not scream.
I bit into you and then it began,
You trembled, you crumbled, the drippy jam ran.
I munched and as I did, I thought,
There's nothing quite like a scone well bought.

Pavitar Kaur Gill
Who had scones after a long time, with SJ at Fosters, in Holland V,
20/11/09

Musings in May on Motherhood

2010-05-05T00:16:00.007+08:00

This week has been filled with memories for me. This is the week before my first child's 14th birthday, and I keep thinking of what it was like 14 years ago when I waited for him to be born. This week is also the week before Mother's Day, and I find my thoughts drawn to what motherhood has come to mean to me since that fateful week in early May 14 years ago.

I had read all the books I could lay my hands on about pregnancy and motherhood, and babies and children and armed with all this knowledge I was prepared to face the happiest moment of my life. It was indeed, till then, the happiest moment of my life... the day my eldest child was born on 10th May 1996, after 17 hours of labour.

He wasn't very keen on being born, as he was due on the 6th but seemed quite content to stay put. I even tried to induce labour by going for a long walk to get a choc fudge sundae from MacDonald's 4 kms away from my home, and as my hubby and I trudged along I really thought I was going to give birth right there on the beach! When we got to Mac's there were no choc fudge sundaes, so we had fries and took a cab home. All that walking for fries! And no baby in sight either!

But soon enough, in a few days, my water bag broke and I rushed off to the hospital at night all excited at the prospect of finally having him come out, and 17 hours later I held him in my arms and he opened his eyes and looked at me, and I knew that he knew me, and I was happy. So, very, happy.

And I have been happy ever since, well largely happy. :) He was such an easy baby I was inspired to have another 3 over time, juggling baby births with my health issues. It hasn't been easy managing 4 kids and chronic illness. It does get a little crazy at times. Some times I wonder if I should have ever had any kids at all, and if my life would have been easier and simpler, less complicated and less stressed without the worries of 4 kids. It isn't quite regret, just a sense of "the grass being greener on the other side". Quite a moot point really, since I do have them :)

I live for the moments when one of them says something hilariously funny or incredibly wise, when one of them goes out of his way to make somebody happy, or when they all get along, and life seems peachy. I live for the happy moments, of which there are many, that more than make up for the tense and sometimes scrappy moments that occur when 4 kids get on each other's nerves, when school breathes down everybody's necks and the daily grind is wearisome. I live for the smiles and the love I receive when I give freely to them, not in expectation of receiving in return, but simply because giving, while being part of my job or duty as a mother, is also my privilege and my honour, having been blessed with these gifts, my children.

Living through Crohn's as my children have grown has been tough. All parents grow up as their own children grow up. To some extent, our children are raising us, at least I think they are teaching me an amazing range of things about myself and the world, about love and hurt, about good and bad, about all the things we think are black and white but are actually shades of gray...my children taught me these things.

Growing up alongside my children as I have struggled with chronic illness has meant that while I have been giving I have also been receiving, sometimes disproportionately, and while I have been needed I have also been needy, and many days, simply too exhausted to do much. I have come to terms with the guilt all mothers face and the constant nagging feeling that they aren't good enough or doing enough for their children. I do what I can, we get through the day, we look forward to tomorrow, and sufficient unto the day is God's grace to get us by.

What a privilege it is to have children, and to be a mother. What a privilege it has been for me to grow alongside my kids, and I believe it is a privilege for them to know, firsthand, what it means to live a life of imperfection as personified by me. I think illness made me more compassionate and forgiving, more accepting of imperfection in myself and in others and just a better person generally. I do hope and believe that my kids can see that.

Many times I look at them and I see some element of myself in them, and then I see so much more that is them, entirely them and no one else, and I rejoice that I am not raising clones of myself, but people who will have their own minds, their own voices, their own thoughts, and who will find their own way in this world.

I love the following by Khalil Gibran (1883-1931) in Chapter 4 of "The Prophet". It beautifully sums up how I feel about children.

CHILDREN

And a woman who held a babe against her bosom said, "Speak to us of Children."
And he said:
Your children are not your children.
They are the sons and daughters of Life's longing for itself.
They come through you but not from you,
And though they are with you, yet they belong not to you.
You may give them your love but not your thoughts.
For they have their own thoughts.
You may house their bodies but not their souls,
For their souls dwell in the house of tomorrow, which you cannot visit, not even in your dreams.
You may strive to be like them, but seek not to make them like you.
For life goes not backward nor tarries with yesterday.
You are the bows from which your children as living arrows are sent forth.
The archer sees the mark upon the path of the infinite, and He bends you with His might that His arrows may go swift and far.
Let your bending in the archer's hand be for gladness;
For even as he loves the arrow that flies, so He loves also the bow that is stable.

My musings this May on motherhood are happy ones. I hope they are happy ones for all mothers out there, and for all children too. Happy Mother's Day in advance, and to my dearest son, a very Happy 14th Birthday!

Thanks for reading!

Pav

A Poem On Grief, and a response

2010-05-04T20:33:00.003+08:00

Grief

Grief came one day to visit me
He came quite uninvited.
So sudden and swift was he
I was completely unprepared.

Grief only comes for long stays
So he brings a big bag along;
Once opened up he displays
The many parts of his grief song.

First comes denial, full of disbelief,
Engulfing my heart and brain;
How does one begin to seek relief
While numbness hides the pain.

Anger comes fast upon denial’s heels
Now numb no longer but wounds bleed;
Why now, why me, why do I have to feel,
Tears flow and thoughts swim without heed.

If I just hadn’t said this, if only I hadn’t done that
Regret and sadness mingle with anger’s chorus;
While bargaining makes an entrance next
Desperate to understand things between us.

And just when it feels like I’ve cried all my tears
Depression follows with deep pain and sorrow;
The wounds of the soul gaping bare amidst fears
That I’ll always feel this way tomorrow.

Somewhere along the way comes the end
Where quietly grief ends his drawn out song;
Acceptance is the stage where I can mend,
I wait in tears; don’t let it be long.

Then grief will pack up and leave my soul
And I will stay and carry on,
Patched and mended, once more whole,
And hopefully a lot less forlorn.

Pavitar Kaur Gill

My friend Pauline Tan sent me this in reply to my poem on Grief (25th Feb)

Let not grief overstay his welcome
Take him firmly and show him the door
And while he stays let him make himself useful
Let his grief song make you something more

May the pain you endure illumine your heart
And show you visions you’ll never otherwise see
Though Grief may gnaw and bring you tears
Its servant you shall never be

In the turmoil and storm which Grief brings
Your feelings shout you are indeed alive
The denial, anger, regret and depression
Are but varied fashions of the cross

For strangely those whom He loves best of all
Also share most closely His pain
This is the paradox of being his beloved
For us to live is Christ, to die is gain.

Pauline Tan

I Went Again To See My Doctor/Patients Aplenty and Patience Scarce

2010-05-04T20:30:00.008+08:00

This is a poem about doctor-patient relationships, something that interests me greatly. I am curious as to how patients view their doctors, and doctors view their patients, and the communication, or lack thereof, that goes on between the two parties. This poem is a general expression of some of the struggles patients go through, and not a reflection of the standard of care I have received. Happily, I find myself living the last stanza of this poem :)

I Went Again To See My Doctor

I went again to see my doctor
As I was feeling rather ill,
I wasn’t quite excited about it
I went fighting against my will.

I’m back again with my chronic ailment
And I need more meds to get by,
I don’t know why I’m feeling torment
When I see my doctor I realize why.

Here’s a man who has no time for me
His every moment filled with stress,
I see the many patients he has to see
The time for me is so much less.

Why do I say I am doing fine
When my heart is full of grief,
I do not tell of the pain that’s mine
Just to see his look of relief.

And so I rush because I feel so rushed
And do not say what’s on my heart,
I want to gush but end up shushed
I leave out the real “Me” part.

“How are you, doctor, you look well,
Yes, it’s been a while”.
I say this as I really do care
It’s said with a little smile.

When he speaks it’s clear to see
He’s tired, overworked , almost sullen.
One wonders if it’s just for me
Or does this happen with everyone.

Sometimes the doctor tells a story
Of his own struggles and woes,
And for a moment there’s beauty
In the meeting of two souls.

How nice to share our burdens
To see each other as human beings,
But such is not the lot of patients
For whom doctors are super beings.

For unto him who holds all knowledge
Is given the power over me,
And if this inequity I do acknowledge
Such a lasting hold has he.

“You are to be told and you must hear
You do not know enough to judge,
I have no time for your every tear
I am too busy, I do too much.”

And so I bite my tongue and hold my thoughts
And when I leave I feel empty and yet full,
Bursting with tears unshed, with sorrow fraught
Wishing he cared, feeling like a fool.

Does it matter that my doctor care?
Do I need a human touch?
I get my meds each time I go there
Surely I musn’t ask too much.

And yet I know for sure my healing
Is not to body only bound
For I am more than just bodily being
In it are soul and spirit found.

When I find a doctor who understands
The varied needs that I do bring
I daresay I will grasp his hands
And never let him go for anything.

Pavitar Kaur Gill
26/02/09

Patients Aplenty and Patience Scarce

A poem expressing the woes of doctors, as perceived by a patient.

Patients Aplenty and Patience Scarce

Another day at the clinic,
Another day with patients galore.
Another day of feeling melancholic,
I can hardly take any more.

All day they troop into my room
Each and every one;
Wanting me to dispel their gloom
Me, a mere human.

I ask for symptoms to understand
What they are going through,
And hopefully I can recommend
Some action to help them too.

I get a story long and grey
Winding all about,
I lose myself along the way
Trying to sieve sense out.

Finally I think I see what’s there,
I say what I believe is true.
I tell what’s honest, right and fair,
I tell them what to do.

But doctor, can I ask something,
Are you sure that this is so?
I read online there’s other things
That can work as well, you know.

Aromatherapy and ayurvedic,
Herbal remedies and acupuncture
Doctor, you’re very allopathic
Perhaps for that there is a cure?

I’m not sure why my patient wonders
If I know these cures to be a remedy;
I went to med school for six long years
He's just been online for three.

The internet has helped them know
But wise they are not yet;
And I must be their spring board
For all the quack ideas they get.

And when I say I do not know
They give me looks of disbelief;
Then take the meds I give them
And often find relief.

I try to listen to their many troubles,
But woes aplenty I have also.
They do not seem to sense my struggles,
I do not think they care to know.

For why would they when the duty’s mine
And they pay a fee for my advice;
Their money’s worth is all and fine
And that for them will suffice.

And just as well that this is so
For so many, many a day do I see;
And torn and tired would I grow
If each of them wanted more of me.

For to whom should I give something more
And to whom should I give much less?
For each ought to be the same as the one before
None of them a prince or princess.

Yet there are the ones who think that doctors
Have far more time than we do,
Who want, nay demand, special favours
Imagining themselves to be who’s who.

I know so and so, my father’s friend,
My husband’s uncle's niece,
And if you don’t give me time without end
I’ll write a long, nasty piece.

The looming threat of malpractice suits,
The nasty complaint letter;
These are possibilities, rotten fruits,
Perhaps another career would’ve been better?

And so I tip-toe around the patients
Trying to remember my first love;
When medicine was my passion
And I thought that I could serve.

So dear patient if I appear quiet
And I seem in an awful hurry,
Do not think it is you whom I hurt
For it is I who must worry.

For with patients aplenty and patience scarce
I am losing myself in a haze,
Of patients rushing through my door in a farce
And myself left in a daze.

Such it will be until the system improves,
So patients do learn to wait,
Doctors must hang on to their dreams
And hope it won’t be too late.

Pavitar Kaur Gill

(Feb 2009)

When The Going Gets Tough (A Poem About Hope)

2010-05-04T20:26:00.004+08:00

Here is a poem I wrote in 2007 when I needed to hold on through a bad patch with my health. I hang on to hope a lot... and this is a good season as any to revisit this, and share it.

WHEN THE GOING GETS TOUGH

When the going gets tough, the tough get going,
but no one ever says where.
Where the tough are going do they know
If they will find their rest there?

Does it matter if one knows the destination?
It's the journey everyone speaks volumes about.
But how long can one keep going on blindly
Till one's heart and mind fill with doubt?

Hope, it is said beats in their heart
As they fight the good fight each day.
Something unseen, untouched and yet felt,
Unless we send it away.

Amidst the tears, the fears, the pain of life
Hope calls out to say don't quit
Don't lose the war, the battles do count
Take my hand, we'll finish it.

Pavitar Kaur Gill
(2007)

Experience, the Essential Educator

2010-04-29T00:41:00.003+08:00

All day yesterday my thoughts were directed towards death and dying, the passing of my father, the intertwined lives of parents and children, the loss of a parent, grief and healing...all thoughts precipitated by the passing of my friends' mother after a battle with cancer. I had planned to go to her wake last night, and all day my thoughts gravitated towards these seemingly morbid thoughts. Somehow, I didn't consider them morbid. Instead, I felt that they were necessary because I was re-experiencing the loss and grief of my own father, and in some way, identifying with the loss my friends were experiencing.

I have attended many wakes and funerals, possibly with increasing frequency as I age. I recognized that for the first time I truly apprehended what it meant to lose a parent. I knew what it felt like for a child to see their parent's body lie in a coffin. I felt the pain my friends must have felt when their parent first passed away, the shock, the finality, the closure to a period of pain and illness... I could enter into these experiences alongside my friends because I too had been through them. I said nothing about these things, but I felt them. I think it resonated with my friends, and one of them very kindly asked about my father, recognizing that his passing was still fresh for me.

And yes, it is fresh. It is hard to go to a wake and not be reminded of what I endured, thoughthe circumstances are very different. Experience helped me identify, but it also brought the past alive and I did feel pain. When I came home I found myself tearful. Tears I had held back welled up in my eyes. I thought through the parallels and the disparities between circumstances and I relived some pain, but I let it go soon enough.

Experience is useful for people who live with chronic illness too...it educates us even as we live through it. My having surgery now allows me to identify with others who have had surgery. In the past it would have been some abstract and theoretical head knowledge of what surgery might have been like. Now it is real, visceral, concrete...I know it in my head and my heart and my guts...and of course I should...they got the chop! :)

As painful as experiencing something can be, each experience has its positive side. It can help us identify, help us empathize, help us help others who go through similar experiences. I choose to cherish my experiences then, for they go towards making me, ME. Even the "bad" experiences can be used for good if I choose to look for the good in them. I do choose, and I cherish. My experiences are an essential educator that have taught me how to be a better person. I am not afraid of what experiences may come. I embrace them.

Thanks for reading!

Pav

Defying Being Defined by Disease

2010-04-28T13:35:00.005+08:00

I am more than the sum of my bodily parts. I am more than the soul that inhabits my body. I am a part of something bigger than myself. I am part of humanity. That sea of bodies and their incumbent souls that moves upon this earth as would many millions of ants upon the sand.

And like the ants that swarm about, each one similar and yet uniquely different, so too in this sea of people are we similar and yet not the same. Bodies that look and function the same, and yet the indwelling soul distinctly different and apart.

And unlike the ants that scurry about, each one dedicated to its own task for the survival of the colony, we do not live and work for the survival, the existence or even the betterment of humanity. We live pretty much for ourselves.

Living for myself in my own little world takes me away from my fellow brethren with whom I have an unbreakable bond. Living for myself means I am isolated from that which makes me whole. Living for myself cripples my soul.

And yet to live for others requires energy. Energy to listen, to talk, to visit, to be with in silence...the kind of energy that is life giving and yet draining. It gives life to those who receive it and drains those who give it. I do not have that energy these days. I am drained simply by being.

To live for others requires love. Love to put aside one's own desires and noisy needs and to listen to others speak of their own struggles and troubles. In giving this love one receives love also, and life is enriched. I do not have that love because often times I am drowning in my own needs and struggles and troubles.

A life lived for others demands an openness and strength of heart. A heart that gives and also receives. A heart that feels the pain of others but can bear that pain without falling apart itself. I do not have that heart. I feel too deeply, fall apart too easily, the sorrows of this world affect me to my core. I build walls around my heart to keep out the pain and in so doing, my brothers and sisters too.

But this was not always so. In a not so distant past I lived more freely for others. I enjoyed nothing more. I found meaning in a life of service and in giving of myself. But Crohn's Disease changed all that. I now find it all too much. Exhaustion, and the side effects of medication make it difficult for me to function some days, so much so that I have had to draw a line around the few that I can live for, and live with, and that understand me and what I am going through, and for me that is enough.

Is my life, my very existence, being defined by disease? I ask myself this often. I have changed in many ways since my illness, but I have also aged, and how many of us have the energy we had at 40 that we once had at 20? I have had 4 kids, and how many Mums out there can find the energy or time to do much for others, when really being there for family takes everything out of us?

I defy being defined by disease. Yes, it is a big part of my life. Yes, not a single day passes when I don't think about it. Yes, I am changed. But I embrace myself. This new me isn't a "bad" me. It's a focussed me. One who has recognized her limitations and is honest to herself in saying that she cannot be all things to all people, just some things to a very few people.

I am more than the sum of all my bodily parts, diseased or otherwise. I am more than my soul trapped in a decaying body. I belong to the sea that is humanity, and yet within that sea, I am a secret cove, where people who know how to find me may find refuge and rest, and peace from the storms of life...a listening ear, a sympathetic and empathetic heart, laughter and tears, and whatever else I can offer.

If you're reading this, well, you've found me :)

Thanks for reading!

Pav

Collateral Damage

2010-04-27T22:52:00.004+08:00

Today was a tough day for me. I am adjusting my medications, weaning off steroids and increasing immuno-suppressants to keep me in remission from Crohn's after a very successful surgery. The difficulty with my medication is the side effects I need to tolerate. They can be so unbearable at times, and some days I don't feel like myself at all.

Weaning off steroids is a tough job. I am now down to a tiny dose, 5 mgs, on alternate days with the aim of stopping altogether after 4 weeks or so. I didn't take any yesterday, and so I took some today, and within hours I began to feel the effects. I already had an aching body, a headache, photo-sensitivity that hurt my eyes etc from the immuno-suppressant, and the steroids made me edgy and irritable and in no time at all I found myself barking...at the kids.

This, for me, is the hardest part of living with chronic illness - the collateral damage that happens while battling Crohn's, and in my case it happens to my kids. There was a mix up about CCA's and pick-up times, and I got 2 phone calls with my sons protesting that they couldn't find their sister...I barked and got mad because I was miles away and I didn't have a clue where she was either...but neither did they! Eventually she was found in the Music Room attending her singing class which I had forgotten all about. Oh my. Apologies issued to my dear sons.

Then there was Maths homework or rather class work to finish because my girl took her time in class, and so I got an email from the teacher and we tried doing the work. Ooops, Mama wasn't in the right mental state, and so we spiralled into a tense state of my scolding her and she tremblingly fighting off tears. Oh dear. Apologies to my daughter.

And then my youngest son wanted to watch a movie before bed time...after playing on the X-Box. There was just no time left at all. Barked at him and told him in no uncertain terms that he couldn't because he was due to go to bed. Tears and unhappiness. Oh no! Another unhappy child.

What a day! A week's unhappiness squeezed into one sad day. I found myself in tears too. I understood what I was dealing with in terms of my meds, but how could I explain that to my kids? And how unfair for them too, to have to suffer in this manner. But this is one of the realities of life with chronic illness. When the patient has a bad day, for whatever reason, be it pain, medication, depression, etc many times others around them suffer too.

There was a silver lining in the midst of it...my eldest son showed a maturity beyond his almost 14 years. He spoke calmly to me and quoted from his life sciences class today, that scolding and shouting don't help a child learn, or respond well, and it stresses them etc, and he offered to help his sister too... I was amazed and terribly embarrassed! I knew all that, but in practice it had flown out the window, and my own child was telling me how to parent... and he was right too! I am glad I took it in the right spirit instead of brushing him off. I later made up with him too and told him how much I appreciated his wisdom.

All ended well, and tomorrow a little extra time on the X-Box will mend everything and we'll carry on as we pretty much do, in relative peace. I do hope I can get a handle on myself, despite meds or anything else. I so desperately want to be a good example to my kids, and how to be one if I bark, and scold, and dissolve into tears in this manner? Some days I comfort myself that other parents also have bad days...but then no one ever talks of them, and so I'm not too sure if I'm normal or a sad and terrible aberration on the face of planet parent. oooh drama mama alert :)

I stand back some days and I am amazed that my kids are decent and normal kids (as far as I can tell!) and I thank God for that. I thank God that He is teaching me that I am not the centre of their universe, and that despite my weaknesses and faults, which are many, my family will be alright. I pray for that often, more so than for my own personal health or gain or anything else.

I remember a book title I saw years ago that I have mentioned elsewhere in my blog, but which bears repeating here : "If Mama Ain't Happy, Ain't Nobody Happy!". Today I saw that to be true. It was real. I wasn't in control, and everyone was unhappy...thankfully Papa came home and saved the day :) Wonderful Papa who is so cool and calm and collected...I thank God for him too!

What then to do with myself and my meds and life and its stresses? I had a good cry, apologized to those involved, made restoration and have stopped hating myself. I think tomorrow might just well be a very good day. I live in hope that TOMORROW WILL BE A BETTER DAY! Maybe I should go out for awhile...wander about and be at large and burn off a bit of my edgy energy, and then come home relieved to be back and happy to see everyone...I think that's a plan! I hope it works! :)

Thanks for reading!

pav

8 Weeks on the Road to Recovery

2010-04-12T01:35:00.010+08:00

Two nights ago, (9th April) was the 8^th week marker for me. 8 weeks post surgery on the Road to Recovery. I had been thinking about writing in my blog about my experience, and what it meant to me, but somehow I never got around to putting my many thoughts down. An old friend hoped to read about my post-op reflections, and well, I can’t disappoint a friend can I? And I do so love an audience J Here’s to you, Puni, and thanks for wanting to know!

In my last blog post I wrote about the events leading up to surgery. While the doctors pored over CT and XRay films I did my own pre-op prep. I had a haircut and waited as patiently as I could for my doc to announce the day. My heart leapt in excitement when he came by and told me all systems were go for 12^th Feb. I had never felt so ready for that day. Finally!

I could barely wait. I was excited and also anxious, but more excited really. The same way I felt when I happily and cheerfully went off to have my first baby in May 1996. Having read all about it I had no clue what was in store for me, really. Just a lot of theory and no experience. I woke up early on the 12^th feeling a sense of anticipation. I was told I was scheduled to be wheeled away at about 6pm, and the hours seemed to wear on.

An Aunt, Kay, came to spend time with me and to pray with me in the evening. I was very encouraged by the prayer, and I felt comforted. In fact, I felt myself drift away to a very quiet and calm place, and a peace descended on my soul. It was a truly supernatural experience for me. I was grateful for her company and her taking the time to spend about 6 hours with me, and later with my husband, while I was in surgery.

I remember being worried about what Kay and my husband would have for dinner that night while I was in surgery, and so I helped plan a really nice dinner for them. My husband had treated me to a VIP suite at a private hospital, and the menu was simply quite amazing, if one could actually eat any of it. So after consulting Kay I ordered French Onion Soup and Caesar’s Salad as entrees, and Chicken Nasi Briyani and Beef Fillet Steak for mains, Chocolate Cake and Apple Pie for dessert, and juices and tea for drinks. I was so happy that they were going to be well taken of food wise in my absence. Strange as it may seem, it gave me pleasure to know that they would be eating a hearty meal, and indeed it was very hearty!

I was in the shower when suddenly my gastro consultant came by to see me. He was leaving for Chinese New Year holidays overseas, and I was to be left in the capable hands of the surgeon, the anesthetist and the pain management team, all of whom I had met before. I rushed out to speak to him and he prayed for me too. I was deeply appreciative of his prayer. We said our goodbyes, and I told him that by the time he got back a few days later I would be running about the wards, and he’d never guess I’d had surgery. J

They came to get me early, and popped a dormicum in my hand with literally 2 sips of water in a tiny little cup. My stomach had to remain empty for surgery, but two tiny sips were okay. The dormicum was to keep me calm and help me sleep. We left the room, hubby and Kay trooping along, with me on the bed in a blue gown feeling a little naked, but happily covered in a thick white blanket. As I was being wheeled away I looked up at the ceiling lights, and thought of how in the movies they always flash by so fast. They didn’t flash by in my case as I wasn’t being rushed anywhere, and my life didn’t flash before my eyes either. I made a joke or two, kept up a smile, and tried to make eye contact with the orderly pulling my bed along, but he remained rather aloof. Must be too many patients a day to care for anyone in particular, I guess. As we reached the “No Entry” doors, I said my quick goodbyes, told hubby and Kay I would be fine, squeezed their hands and vanished as the doors closed behind me. I was glad they would have a nice dinner together but my eyes filled with tears and I was embarrassed because finally, yes, finally, the orderly looked me in the eye, but his look was so vacant I sobered up immediately, not wanting to be thought of as a baby or worse, a drama mama J.

I was wheeled to a corridor in front of yet another set of big doors which were open, and beyond were the actual operating theaters. Someone approached me and then asked me the usual questions…name, IC number, do I have dentures etc. The sort of questions they ask you almost everywhere else in the hospital ad nauseum . And then it happened…I floated away. I was completely and utterly gone. I have no idea of what happened to me after that until I woke up 4 hours later.

The surgeon had toyed with the idea of parking me in the ICU for the night for close surveillance, but after the surgery he decided I didn’t need it and I was sent back to my room where my husband and Kay were waiting. It was now past 10pm, and the surgery had taken longer than expected. I remember opening my eyes and seeing them there, and thanking them and then I drifted away in a morphine daze.

The morphine helped with pain, but made me nauseous the next day. I tried to manage with less, but it was painful. I tried switching to pethidine, but that also affected me. I had never taken these powerful drugs, so I was completely naïve to them. In the end I managed with very little morphine for a couple of days, and then switched to panadol suppositories which helped a lot with far less side effects. The net effect of going off morphine early is that my guts got going earlier, I was less nauseous, I walked by the second day, and I felt better overall. I could manage the pain, though sometimes it was tough. The morphine also gave me weird dreams and I never felt rested. How could I when I was with McGyver in a science fiction movie, running across open fields and swimming with whales in the ocean? I was exhausted!

My hubby later told me that as he was driving home that first night he met the surgeon in the hospital carpark, and so they had a short chat during which he said that they had removed my appendix, my gallbladder and about 30 cm of small intestine, a lot more that we had earlier anticipated. Apparently there were 3 more strictures forming and I would have been back for surgery sooner than later if he hadn’t taken them out. I was rather shocked by the 30 cms, but I have come to accept it now as something that needed to be done.

As I had been lying in bed for so long prior to surgery, due to being hooked up to so many tubes, my muscles had become weak, and so when I began my first walk on the second day post-op I was exhausted by a short stroll. The nurses had to help me as I had a catheter and urine bag, a drip for meds, another line for liquid feeding (TNP), a tube and bottles for wound drainage and a very sore wound. Basically I clanked about the ward like some Frankensteinian creation…I scared myself!

I did pause and glare for dramatic effect at some visitors next door who seemed to think nothing of standing outside my closed door talking at the top of their voices, and crowding around the doorway of their VIP patient, the Governor of some SEA country…it was so rude and so annoying. My glare and my state was enough to scare some of them…they behaved much better afterwards. J

I waited in anticipation of tubes being removed and the first one to go was the naso-gastric tube, a very annoying tube shoved down my nose and into my stomach to help drain liquids. Green hideous stuff came out every now and then and phlegm too because it is common to have some post-op. I hated that tube because my nose got sore, my throat hurt from it, and the hideous, bilious liquids nauseated me every time the nurses came to suction the bag and empty it.

My surgeon came by and on the 3^rd day decided to remove it much to my joy. I wanted the nurses to do it gently, but he said no need, he would do it, and in 2 quick pulls it was out, much to my relief. It was painlessly removed and I began to feel a little less like a freak show.

Later that day the catheter came out and I was relieved because I had a feeling that my bladder had been bursting for days, but the nurses said that my liquid input was equal to liquid output and so I was doing fine. I was tormented by lower back pain because of this full feeling, and when the catheter came out I was so glad to be off to the toilet even though it meant a lot more walking. The nurses were worried whether I would be able to pee again after the catheter…but I had no problems at all. Apparently some patients do have trouble and it takes them a while to readjust. I was relieved I was able to do it and didn’t need a bedpan or anything like that.

Eventually the central catheter line inserted into my vein had to come out as I no longer needed liquid feeding and was on clear soups. Later my wound drainage tubes would come out too, the last of my tubes. All of these were removed painlessly which amazed me because I had been under either local or general anesthesia when they had been inserted! I was relieved to be finally free of tubes and able to move more freely, but that only happened around day 6 post-op.

I recognized in myself a strong streak of independence that I had seen in my maternal Grandma who till her last days insisted on bathing herself and cooking for herself. I, too, valued my independence and found it hard to receive help from the nurses. Prior to surgery I insisted on bathing myself even though the nurses offered to help because they worried I was weak. I let them plastic wrap my left arm to keep it dry, but managed showering and hair washing myself, and I felt a sense of accomplishment every time. What tiny shreds of dignity I had left I held on to…

Post-op it was too much for me to manage a shower, and I wasn’t expected to either for the first few days. A nurse came by to offer me a wipe wash on the 3^rd day, and so we navigated tubes and drip stands, the changing of the gowns, hair and teeth brushing and basically I started looking and feeling human again. Not being on morphine too much helped tremendously. The surgeon and the nurses remarked that I was doing very well, and I felt better with each passing day. I walked more each day around the ward, I glared a lot less at noisy neighbours J , I managed a walk on day 6 post-op to the hospital gardens all by myself, having done 9 rounds of the ward the day before and getting rather bored and feeling trapped.

I did not start eating till a few days after surgery, and even then I began with clear soup, and then plain porridge and some tea in the morning. My fantasy then was to have chee cheong fun, a nice yummy soft plain rice noodle dish with plum sauce, and the first time my doctor allowed me to have it…it tasted like heaven! My first real meal in over 50 days. I had it for breakfast and lunch even after I left the hospital…J I found though that immediately post-op I was not in a hurry to eat until the effects of the morphine left me completely. My surgeon was keen on testing my system, but I was reluctant and so began with clear soups for a couple of days first, culminating in chee cheong fun upon discharge from hospital.

One of the funniest things about being a gastro patient post surgery is that the surgeon was literally obsessed with whether I had passed gas…this passing of gas is the sign that the system is working. Everyday he would ask me if I had passed gas, and then the nurses asked me questions too…what colour and texture is the stool, what quantity, did you collect urine for measurement, any gas yet? A myriad of questions for me throughout the whole day. I felt like a sick baby…minus the diapers!

These sorts of things can dehumanize and can embarrass a patient, but for many patients with IBD, these issues are commonplace. They are part and parcel of everyone’s lives, just maybe a bit more so in ours. And so it was a happy occasion when gas was passed, and it was duly noted in my file, and reported back to my surgeon who was ever so pleased though he wanted to know if the nurses had heard it…fortunately on one occasion a nurse was there. Sigh. I found myself beyond embarrassment with these lovely nurses who laughed along with me and seemed to enjoy my jokes. I told them they were lovely nurses, they said I was a lovely patient… and so we all got along nicely.

I eventually overcame my embarrassment at needing help to manage a shower. I was taped and plastic wrapped in strategic places, and then I managed to shower myself but needed help getting dried and dressed. I made jokes about my lack of shapeliness, and how all the nurses looked so slim, and of course we happily blamed the four kids for my loss. Through much laughter we made our way through the embarrassing moments. Embarrassing for me but not for the nurses…they have seen it all.

There was one night nurse of whom I became very fond and I shall never forget her. She was from China, and we were able to communicate quite well. She laughed at my pathetic Mandarin, and she had a son in China, so we had a few chats about life. She saw me through a rough night, in fact the Night of the Passing of the Gas…that fateful night my digestive system woke up and the bile in my system had nowhere to go as I no longer had a gallbladder to store it and for some reason I kept having to go to the toilet.

I would ring the bell for help, she would come running, help me sit up, unplug my drips stand, wheel it and help me to the toilet, come back when I called, and she would help wash and clean me up. I just couldn’t manage doing it myself because my abdominal wound didn’t allow me to move too much. And so we formed a pattern and made many trips one night…possibly even 10 trips. She never complained, she was very kind, she helped me get over my embarrassment at requiring help, and we made a decent team.

I did break down when I was alone though…I felt overwhelmed by everything. By the big wound that seemed so scary I didn’t dare look at it, by the 4 small laparoscopic wounds that hurt but seemed tiny in comparison, by the need to ask for help for things I had always managed myself, by the loss of my dignity and privacy, by the feeling that at 42 I felt like an 80 year old invalid, by the invasion into my life of medical staff, medical procedures, by the removal of bits and parts of me, by the fear that the disease would come back and all of this would be in vain…I broke down briefly and let myself cry. But not for long. I knew deep down that what was done was done, and it was for the best. Someday soon I would eat again. Someday soon I would be normal again even if I always had scars and parts of me were gone. The essence of me would remain, or so I hoped.

But the essence of me became frail and fragile. I do not know if it is due to the surgery or the starvation prior to it or a combination of both ranging over almost 3 months…starvation, surgery, recovery. It has taken me 3 months to feel less frail. I remember desperately wanting to be discharged from hospital despite having a low grade fever…I was allowed home and would return in a few days for a check up. I desperately missed my 4 kids, and had their photos in my hospital room, and I really needed to go home to them. When I went home I felt like I was back where I belonged. It was wonderful…but after a few hours reality set in that I was on my own with a wound that was still rather fresh, 9 days old, and I didn’t know if I could bathe myself or manage the kids, and I didn’t have the nurses to help me…and I did have a mini collapse! Again, I was overwhelmed. The rest of the family left me alone to rest…but I had difficulty getting up on my own, reaching for my stuff hurt, and just the trip home had exhausted me beyond words. I was reluctant to trouble anyone, but at the same time I needed help, and on some level I was even annoyed that no one realized this… then I told myself that mine was the first experience in the family, and if I needed help I would have to spell it out clearly.

And so I did a better job at communicating my needs and getting the help I needed, and everyone was so helpful that I managed to manage…and as the weeks passed I felt stronger and stronger. My husband and the children were so kind and helpful that I was overwhelmed, not by my situation or sadness, or fear or anything except gratitude at their attitude. I asked for help and received it, and many, many times I was blessed even without my asking. At the same time, I had a network of close family and friends praying for me and I updated them daily. I was amazed at the dedication of many who kept me in prayer and in their thoughts. It made a tremendous difference to me, and to my recovery. I was told it would take 6-8 weeks to recover fully, and at 8 weeks now I can safely say I do feel quite recovered.

Physically, I feel better and the wound has healed well despite requiring two squeezing sessions with the surgeon because of fluid accumulation and slight swelling. (It’s an agony being squeezed…but very necessary to avoid infection). Emotionally, I feel better too…I can look at my wound and not feel tearful and fearful as I have earlier on. I remember thinking that I had been violated in some way…a hole made into me and things taken out. How awful the thought had been, and my knees would literally go weak at the thought of it. Now I am no longer upset by it. It is there, that’s all.

In the early weeks after surgery I remember thinking I had been silly to have been so excited about surgery, because in reality it hurt like nothing I had felt before. Even childbirth without pain relief had seemed easier to me. But as with childbirth, the pain of the post-op road to recovery tends to fade with time. If we never forget physical pain, women would never have more than one child. People would never have more than one surgery. I think that if I had to go through it all again I would be less excited but more emotionally prepared, and certainly much more aware of what to expect.

I am hoping never to need surgery again. I can now eat fairly normally, and have begun immuno-suppressant medications to keep me in remission and prevent recurrence of the Crohn’s. I do hope it works and I don’t ever need to starve again or be opened up on an operating table again. I live with side effects from the meds, and they can be depressing, but I am hoping to get used to them, and have a better quality of life, and a sense of normalcy that is more in line with the rest of the family’s, and to be able to live and do all the things I want to do. I am battling the flu now because my immune system is compromised and I catch bugs so much more easily, but I do think I will recover soon and feel better. I live in hope!

At my last appointment with my surgeon, when he said to see him in 6 months unless something cropped up earlier, I realized that I was well and truly discharged from his care. He said something to me as he looked into my eyes. He said that I had done very well through what had been a very difficult time, and a dangerous surgery. As I look back on all that has happened I realize that I have indeed done well. I have survived something dangerous and difficult and I have come out stronger. I feel it, now, at 8 weeks post-op more than ever since the surgery.

I know that I made it with the help of great healthcare professionals and the prayers and love of my family and many friends. I was very uplifted through it all, even in my darkest moments I have not felt abandoned. I am grateful to God for His care and the many manifestations of His love I have seen in the people in my life. My faith is stronger, my hope is greater, my heart is overwhelmed with gratitude. I am well and truly blessed.

Thanks for reading!

Pav

Life, Interrupted!

2010-02-11T11:40:00.013+08:00

I am in my hospital room, for the 3rd time since 1st Jan 2010, battling with an obstruction at my terminal ileum, where small meets large intestine, and finally I am getting around to my blog. My life has been interrupted by incidents outside my control. So much has happened, and I am now a mere day away from my first surgery as a Crohn's patient. Wow!

What a momentous event it will be for me... I am joining the hallowed ranks of many, many brave patients with Crohn's who have had to face eventual surgery, especially those with intestinal strictures or narrowing, like myself. I am strangely encouraged by the fact that many others have gone through the same procedure, not that I rejoice in their sufferings, but I find comfort in them. If they too have held their heads high and survived, so can I!

Fortunately my disease is localized to the terminal ileum, and so its removal may be the start of remission for me, barring recurrence of the disease, chances of which are about 20-30 percent. I live in hope, and will be on strong immune-suppressive meds post op to stave off recurrence. Here's to a happy removal of ileum, and also my gall bladder which has developed stones that will cause trouble down the road! Fare thee well, ye two pieces of no gooders! haha! Out with thee!

But how did I come to be here, parked in a bed in a room, waiting for surgery? I reflect on the events of last year, and I know my spiral into ill health began with my father's illness in late August. He was in a coma for a month and I traveled up and down to KL to be by his bedside, neglected my own health in the process, and went through severe emotional turmoil. My father was dying, and as a child of divorce, and having never been close to him, I had so much hurt to deal with, and it all surfaced during this time. I grieved for the father I wished I'd had, and mourned the passing of the one I did have... and being a sensitive person, my mind and gut connection always so sharply attuned, my health began to crumble. And yet I knew in my heart that this was a rite of passage I had to endure. It was time for me to bear the loss of a parent and fulfill my duties as child, but most importantly, the time had come for the healing of my soul. I became whole again inside, as my body, my outer shell, fell apart.

After my father passed away I went off on a holiday in October with my own family to Langkawi, but I caught a bug and was ill... and it took a long time to recover. I suspect I never fully did, and this has always been a problem I have had being very sensitive to infections. November was non eventful, but exhaustion set in, and my meals were very small portions, and I was full very quickly and sometimes had nausea, but not much vomiting.

In December we tried to go to Manado for a holiday, but bad weather hijacked our plans while a family of Indonesians practically “hijacked” our plane (a long story!) and refused to let the plane leave... and spending 12 hours trapped in a flight to nowhere was too stressful for me. I began throwing up with severe pain through a large part of December. Christmas was such a non event, I spent it on a sofa. I stopped eating normally, and when even porridge would not pass through my system, I then knew that I was very ill, and went to see my doctor. (perhaps I should have seen him sooner!)

A CT scan showed gall bladder stones, the Crohn's was flaring up with the stricture inflamed and I also had gastric pain. I was admitted on Jan 1st to try and reduce inflammation. Not a very Happy New Year for me J. No food was allowed, only liquids, like Resource, and even then at half strength because full doses made me throw up. Whatever went in just came up, undigested, and I dreaded even drinking because it brought pain. This, then, is life during a flare up for Crohn’s patients. We fear to eat because of pain, and then weight loss begins, unsurprisingly, with all the vomiting too, bringing further exhaustion, and malnutrition.

Steroids are the standard issue for these episodes, and so I was started on medium doses, which then had to be increased, causing bloating, a swollen face, and mood swings, but they do wonders too. Fortunately, my meds did kick in and help reduce inflammation and pain. The inflammation subsided, but the scar tissue around the terminal ileum, a result of over 12 years of disease and continued cycles of inflammation and scarring… that scar tissue is irreversible. Nothing can remove it, and it has now come to a point where it is so scarred that the terminal ileum must come out. Surgery was suggested, but I viewed it as the final option. I decided to try and starve longer to see if things could get better. A fear of surgery and recurrence of disease and post op pain immobilized me and I was mentally unprepared for the idea of surgery. Having had a less painful obstructive episode 5 years ago and starved for 8 weeks, I was sure I could do it all again, and escape surgery. I really wanted to give it a go! (feel a bit silly about it now in retrospect, but it’s a moot point!)

I was discharged briefly then readmitted when vomiting returned, and finally readmitted for the 3rd time after a routine blood test found dangerously low levels of potassium. Direct admission... and all I had was a handbag on me. Oh my! My heart could stop any time, apparently. Well, we couldn’t have that could we?! And so began my next admission and this eventual journey towards surgery which then depended heavily on my potassium levels being brought up to par.

Potassium is so important, and yet not all that easy for someone to get into their system, especially if you can't eat. Drips were set up, and the pain was searing and unbearable, and they reduced the concentration of potassium but that meant it just took longer to get it in. Finally they tried potassium syrup, which ran right through me and set off 15 diarrhoeas in 12 hours, and all the potassium I had managed to get in went right out again! Despair set into me… and then I was given a fantastic option of having a central line set into a vein and a catheter threaded through to a major vein above my heart. Into this vein potassium was painlessly pumped, along with nutrients in a predigested form, and all my medications. My first Total Parenteral Nutrition session! I found it exciting, and the best part was I had no more pain.

The joy of not having pain is indescribable when you have lived with it for weeks. The vomiting I had was in reaction to food backing up and the pain it caused was so severe it had felt like a knife cutting through me, and heat and pain searing me, and only vomiting brought relief. Having a central line in meant that my entire digestive system could shut down and completely rest, and hence there is no pain. Even the central line hardly hurts. It was miraculous for me! So simple, and yet so meaningful, when your every nerve has been on fire in pain for weeks.

My potassium level is up enough now for surgery, and I am just being beefed up and strengthened for surgery. I feel like Gretel in Hansel and Gretel… being beefed up for the cooking pot J haha! Actually I am psyched, I am ready for surgery now. It’s been 42 days without food (discounting watery porridge on a few occasions to test drive the system, and one lousy banana that failed miserably to make it past my terminal ileum!) I am hungry and exhausted, and frankly if they offered me a lobotomy in exchange for food, I might just say yes! (not really!)

And so my life, now interrupted, is on the brink of being back on track. I am at peace. I have been sustained through all this by my loving family and friends whose support has been invaluable. I have the best doctor I could possibly have, a good surgeon waiting to help me, and fantastic nurses to see to my every need. I am so blessed. My husband has been a real pillar of strength while trying to balance so much in his life. My children miss me and I am desperate to be home with them, but I know I must pass through this valley first.

It is a valley. I smile, I laugh, I joke a lot, but it is a valley of suffering and many times I have broken down and wept tears of sorrow and self pity and grief, but never for long... I have suffered and I will not deny the truth to myself. But I do not feel bitter. I refuse to allow this disease and all it has entailed to make me bitter. I have found so much hope in my heart despite setbacks, I have found so much love and friendship and sincere care in the hearts of my family, extended family, friends both old and new, and my FB friends have kept me going through all this.

I am reassured of the love of mankind despite the differences of creed, colour, religion, nationality etc… all that seeks to set us apart when in effect, we are all the same. All of us suffer in our own valleys, and this commonality of suffering unites us. I am part of you, and you are part of me. When you suffer, I too suffer. When you are well, I rejoice with you. I thank God for every remembrance of my every friend who has upheld me and continues to uphold me through all of this. You will never know just how much it has meant to me. I love you!

Thanks for reading, and here’s to a great outcome for surgery! Oooooh! I wonder if morphine will give me hallucinations… and who will I see?! J

Pav

Stopping Steroids: Drugs and Drama

2009-12-28T13:46:00.006+08:00

I’ve been on a low dose of steroids for many months now. It’s a special one for Crohn’s called Budesonide aka Entrocort that’s supposed to work directly on the terminal ileum where my Crohn’s is, and so it’s much better than taking stronger steroids, like Prednisolone, which have worse side effects. The funny thing is, I seem to have all the usual bad side effects of steroids while I am on the lowest possible dose of Budesonide ie 3mgs. I have a hypersensitivity to many medications, in fact, except maybe anaesthesia… my dental work requires maximum jabs as does my colonoscopy sedation… I have woken up before and asked weird questions in the middle of procedures…. But I digress…

The side effects of Budesonide, as experienced by me, include bloatedness, weight gain (the kind that makes you look like you have a beer belly or are constantly 7 months pregnant!) mood swings, headaches, and nausea. I have never liked being on steroids of any kind, but sometimes I have had no choice. It’s very frustrating not to have a choice, but life is full of choice-less moments when one has to just do the necessary or needful.

The tricky thing about steroids of any kind is weaning off them. You cannot stop taking them suddenly because the body will go into adrenal insufficiency. Basically, the steroids have been providing the body with cortisols that the adrenal glands usually provide, and since the body is receiving them from another external source the glands stop producing the cortisol altogether. Stopping steroids then places the body in the dangerous position of not manufacturing cortisol, and not receiving any either, and this leads to adrenal insufficiency which can be fatal.

I once tried going off Budesonide cold turkey. I was going to Bali for a wedding, and I felt so bloated, and fat and I just wanted to get off the steroids and feel and look better (yes, I was being mega vain!) so I stopped taking it, just like that. I felt great the first 2-3 days, and my tummy went down. Then I began to feel joint and bone pain and muscle aches and my lower back hurt so badly it was an agony to move. I felt feverish and had chills at night. I lost all apetite and was even throwing up. I couldn’t get out of bed to go see my doctor even but after 2 days of feeling like this I dragged myself off for blood tests and to see him. We finally pinned all the symptoms down to my stopping steroids suddenly. If I had been on high doses and had stopped like that I could have put myself in severe danger of falling into a coma, and eventual death, especially if anything stressful were to happen to my body, like surgery or an accident. Cortisols help us react and cope with stressful events and without them we simply cannot function.

I went back on the Budesonide with the agreement that I would wean off it properly rather than stop cold turkey. Weaning off slowly allows the adrenal glands time to kick back in and produce cortisol again. It has resulted in some measure of side effects but not as severe as when stopping completely. I look forward to being off it altogether, but I do hope the Crohn’s can stay under control without it. If it does flare up badly then I may have to go back on Budesonide and live with my strange body shape for a lot longer. Boo! :(

I would like to lose that swollen belly, I would like to have fewer headaches and less photo-sensitivity, and I would like to be on as few drugs as possible. This is the dance I do with my doctor all the time. I try to get away with as few medications as possible and he worries that I may flare up. We go back and forth trying to find the right balance for that moment in time and hoping it will keep me well for the longest possible time.

I am grateful for my doctor who is a good friend and a genuinely caring person. I just hope he can put up and keep up with my dramas… he says it keeps him on his toes, I say somebody has to be drama queen, and so we get along. :)

Thanks for reading,

Pav

Countless Weddings and Several Funerals

2009-12-12T15:14:00.003+08:00

Somehow as one grows older one seems to have so many more weddings to attend and almost as many funerals to go to as well. While one is a happy occasion the other is an overwhelmingly sad one. Occasionally in between these life events would be the most joyous time of all… the birth of a baby into the family or to a friend. Almost as if God gives, God takes away, but then He gives some more… and the cycle of life continues.

In my younger days I found it easier to attend every wedding I was invited to, be at every funeral I was connected with, visit with every new parent that I knew in my life. I loved the feeling of being a part of something larger than myself. I loved that my kids knew that there were these major events that sometimes involved their attendance, but many times did not, yet they knew the importance of them. Sometimes I reveled in helping out a friend in need. I would cook and deliver a meal, or visit an ill friend in hospital, or sit with someone in mourning… I gave more freely of myself, my time, and my energy… and I enjoyed it all from the depth of my heart.

As I have aged, and continued living with Crohn’s Disease I have found that my energy levels are lower, and I seem to have so much on my plate with 4 kids, my part time work and studies and just managing a household that I no longer enjoy weddings, no longer am able to emotionally manage attending a funeral, no longer reach out to those in need… not entirely because I do not want to, but because I struggle with pain on a daily basis and it makes it very hard for me to do those things. Sometimes I have resorted to selecting the events I will and can attend, and simply declining to attend others, partly to preserve my energy, partly to preserve my sanity.

I am sure I have offended people in the process. People who wanted my company or my presence, hopefully because they really wanted me, and not seat fillers J. People whom I knew but hardly met with in the course of the year would be upset by my lack of attendance at their important life events. I think these people do not know that living with chronic illness drains the very life out of a person every single day… and by nightfall I am a limp rag. I have dragged myself to events… only to find myself suffering from a migraine, or having to be on my best behavior when all I want to do is slump in a chair and sleep… how not to offend people and still be true to yourself and your needs? It’s a very tall order indeed.

I often surround myself with people who understand my needs because I find it less stressful. I find it so good to be on my own when I am in pain or have had a bad night’s sleep that these days I have become quite home bound, entirely by choice. Is this a passing stage in my life? Will I break out of this and rediscover my old self – the one who kept in touch with people and knew their needs, and actually went out of her way to help others?

Part of the problem also lies in dealing with the feeling that haunts me sometimes… the feeling that I reach out to many, but very few seem to reach out in return to me, and sometimes I wonder if this is because I am too naïve, too giving and too easily hurt and not managing my own expectations. The challenge is to keep giving and not expecting anything in return… but it has become harder for me as I have aged. Perhaps it is because I have endured considerable hurt this past year especially with my father’s passing, that I find I do not want to go out on a limb as I once did, but prefer to curl up in a corner with a book, or a movie, or my computer, and often all 3... and let the world go by.

I enjoy snuggling with my younger kids, and making small inroads into the world of teenagers and preteens… and this alone takes up a lot of my time… unbelievable but true! I enjoy quiet moments with my dear husband after a busy day and all the kids are in bed and we watch tv together or talk about our house project, or work, or some issue with the kids. I enjoy watching old classic movies on tv when the kids are at school, with a cup of tea and a slice of something to tide me through the crazy hours when they are all home until they go to bed…

More insular, more introspective, more alone, more with the ones I love the most, and who love me in return… this is what makes me happy, this is what I choose.

Thanks for reading!

Pav

Self Esteem and Affirmation

2009-11-29T21:47:00.005+08:00

Self esteem is an individual's sense of his or her value or worth, or the extent to which a person values himself. Approval, appreciation, worth, value and liking of one’s self…are all wrapped up in one's sense of self esteem.

For patients who live with chronic illness self esteem is a tricky thing. Apparently, if one is diagnosed early in life, during one’s formative years, then one’s sense of self esteem can be affected. I can imagine how hard it must be for adolescents and teenagers to manage growing up with illness that affects them daily and on many occasions impedes their social development. How difficult it must be to be a social creature and “hang with the gang” when one is in pain, and unable to leave home or is in hospital… and what that does to the young patient’s self esteem is incomprehensible to other, healthy young people, and to many adults.

I “came” to chronic illness later in life, after university and marriage, and was diagnosed after having had two children, so a lot of life’s landmark events had taken place in my life. My self esteem had always been closely associated to doing well in school, largely to please my father for whom it was important, and also because I loved reading, and really didn’t have many other areas in which to shine though I managed to do well in whatever I tried even if I wasn’t overly adventurous in life. I had ups and downs; years when things went brilliantly, then a slow period, and then a good span of years, and then quiet again… but overall it was good, and it made me feel good about myself. I dabbled in debating which again went well, and certainly my ego had the occasional boost, and I relished standing up to a crowd of complete strangers and making them laugh and believe the nonsense I’d made up the night before… how thrilling! :

When I was diagnosed with Crohn’s Disease I was in the midst of motherhood, a far cry from academia and debating. A world of diapers and playgrounds, nursery rhymes and alphabets… and I enjoyed the notion that I was passing on whatever knowledge and experience I had acquired in life to my sons. Unfortunately, as the disease progressed the symptoms made it harder for me to do the things I wanted to do. I was going to be Super Mum and cook and clean and wash and be good at just about anything I put my hands to… and it turned out that I couldn’t be good at all that and eventually I was good at the barest minimum. In the process of giving up my ideals I lost my sense of self esteem too – because it was wrapped up in what I did, in my accomplishments rather than in who I was as a person.

I then had to revisit my ideas of who I was and how I saw myself. Was I a failure because I couldn’t do many things, because I grappled with pain, because I perceived that others thought I was a bad mother… because I perceived in the recesses of my mind that I was a bad mother…? Life became almost unbearable under such a burden until I eventually faced my demons and realized that I had not lost my self esteem as much as misplaced it – it was simply waiting to be found as I discovered who I was.

Motherhood brought with it what I like to call “The Shifting Sands Syndrome” which refers to the fact that just when you know what’s happening with your kids they grow and change and pull the rug out from under your feet, and the sands are shifting and, well, you’re basically slipping as the sands shift… till the next state of equilibrium. All this is made worse by the concurrent shifting sands phenomenon of life with chronic illness… I find a state of equilibrium and am relieved and happy bordering on ecstatic, and then that is taken away as the disease flares but it returns at some point in time and so the roller coaster ride goes on and I hang on desperately, trying to stay sane and smiling so everyone else remains happy.

I distinctly remember that a group activity I was involved in at church once decided to do an “Affirmation” session, where we would take turns to briefly affirm each other, the purpose being to encourage each other and to build one another up, and to look for positives in each other. I honestly cannot remember what my group members said about me that night, except for one remark about my hair, and how this person felt my hair looked better longer. Hmmm…. Maybe I only remember this remark because it seemed so… superficial, and as I hold very little value in the length of my hair the remark meant very little to me, and hardly registered as an affirmation.

This past week on Facebook, a friend of mine started a tag thingy… where people were invited to describe him in just one word, and then do the same for themselves, i.e. invite others to honestly describe them in one, and only one, word. I did this exercise, because I was curious as to what people thought of me. I decided to view it as an exercise in affirmation, and with bated breath I wondered if my hair would be featured…”Hairy”, “Long-Haired”, “Mane-licious” being perhaps a few options

I was pleasantly surprised to find myself described, among other things, as “indomitable”, “loyal”, “kind”, “incredible”, ”passionate”, “intriguing”, “entertaining”, “witty”, “captivating”, “articulate”, “quintessential”, “sensitive”, “MamaDrama”, “Mama”, and that all time laugh inducer, “Facebook”. I read this list and had a giggle, and felt rather thrilled, and then I wondered if it could really be true that this was how people viewed me, and if this was what I was… and as I did I could see myself reflected in these words. I could see that I was more than pain and illness, tears and sadness, and that at some points in my life I had risen above my difficulties and been these things to other people and had been perceived as such by friends who had an insight into who I was and what I was like… and they valued these things, in short they valued me. I felt so blessed. I felt like I could fly… I felt like I could face anything that came my way, and get through the worst that life could throw in my path.

I told myself I would write in my blog about Self Esteem and the power of Affirmation, and life with Chronic Illness, and how these three things came together for me last week. Take a moment to affirm someone in your life, someone who is struggling, someone who needs a boost, someone who may have misplaced their sense of self esteem and needs a bit of help getting back on track. It will do wonders! It did for me.

Thanks for reading.

Pav

Humour Helps

2009-10-23T00:00:00.002+08:00

“Laughter is the best medicine”. A very popular phrase that conveys the notion that one can almost laugh away one’s woes. Researchers say that they can show us physiological changes in the body that occur when we laugh. Endorphins are the new morphines, and groups have sprung up across the world that practice laughter the same way de-stressing enthusiasts pursue yoga or meditation.

I don’t know for sure if humour heals, but I do know for sure that humour helps. It has helped me in many ways. I think of myself as largely melancholic when in private, or in the company of very, very close loved ones, and somewhat sanguine when in the company of friends and acquaintances. Sometimes these seemingly diametrically opposed parts of my nature almost seem to clash… I cry one moment, and then I laugh the next! Terms like “bipolar” flash through my mind occasionally… :) but my friends tell me that they do the same… and I am comforted that I am normal.

Humour comes easily to me because I have long used it to hide my true feelings, to avoid confrontation, to get attention, to entertain others, and sometimes just to plain annoy people. It is only in recent years as I have lived with Crohn’s disease that I have come to perceive of humour as being helpful in the healing sense.

When I have been racked with pain, or when I am unable to eat or when I am so drained that I feel weak, I sometimes break down and cry. It’s one of my 2 coping mechanisms. I cry, and the tears, apart from washing my eyes as a friend once cheekily suggested, seem to relieve the burden I feel and carry in my body, my soul and my spirit. Being melancholic by nature though I can linger in this state of sadness if I allow myself to do so, but as a wife and mother I can’t allow myself to wallow. And so I employ my other coping mechanism, laughter, long practiced in my early days when I laughed more than I cried.

While the tears relieve me of my burdens, my laughter completely chases the lingering shadows away. I feel that endorphin rush, and the natural morphine of laughter not only numbs the pain for me, it nukes it as well… it is gone. For that moment in time I feel free.

I laugh easily over fairly silly things, largely I think because I have young children who find humour in even the most inane and banal of things. This is of course a nicer way of putting things than saying I am simple. Ha! Perhaps years of illness have made me so… it doesn’t take much to make me cry and similarly it doesn’t take much to make me laugh. In particular I love witty jokes and cheeky puns, and I enjoy witty repartee with my dear friends who engage and indulge me on occasion.

And so when I am faced with the pain of illness, and by extension the other pains of life such as the loss of a loved one, hurt, the ending of a friendship, grief etc I do not linger for long in sadness and melancholy, weeping and mourning. I do feel and do these, but I choose to see the journey ahead. A journey through time and the healing of some pains, while with others, like Crohn’s , the lack of healing. In choosing I decide to move to humour and laughter as a means of coping and surviving beyond the first flush of tears.

Humour helps me stay happy, and when I’m happy a whole lot of other people are happy too. Humour helps. I hope it helps you too!

Thanks for reading! :)

Pav

At Death's Doorstep

2009-10-07T21:27:00.002+08:00

To be at death's doorstep, to me, means that I have seen death close up. I have been at death's doorstep on a few occasions before... I was there when my maternal grandmother, Ratan Kaur passed away, I visited with my dying maternal uncle, Mohan Singh Penu, in his last days battling cancer and I have attended funerals of friends and relatives who have left this world. At each of these occasions I was acutely aware of the meaning of what transpired before my eyes and I felt deeply the ending of each life.

My own father, Harbhajan Singh Gill, passed away on 26th September after being in a coma for 32 days following a heart attack. I visited him often and watched as death slowly descended upon him. Some prayed for a miracle, others prayed for a quick end to his suffering. Doctors told us he was not suffering or in pain. I never really felt sure of that. Every visit with him was very painful. I saw his once firm and well toned arm muscles deteriorate and his cheeks hollow out... I knew he was fading before my eyes.

The time that I had by my father's bedside was redeemed time... given to me to make my peace with him as a child of divorce even as he lay there battling death. What then to pray for when death visits in this slow manner? I prayed for peace. I prayed for love. I prayed for forgiveness, and I forgave. I prayed for healing... not of the body, but of the spirit. I prayed that his spirit would be at peace, and would know the love of God.

In my heart I knew that even if he was healed miraculously and his life extended by another 5, 10 or 15 years, his spirit, his inner man, would always need that peace, just as I do, and just as all of us do. Peace to leave this world and move to the next. Peace in knowing that one is loved and forgiven and missed and cherished no matter what has happened in the past. Peace that transcends all understanding, the very peace of God itself.

At death's doorstep by my father's bedside I cried many tears... of sadness, of regret, of longing, of hurt. But at death's doorstep I began my own journey towards joy, and peace, and love and healing. It will take time but I know I will get there.

How to journey down this path as someone who lives with chronic illness? My own body began to collapse under the emotional burden placed upon it, the stress of traveling so much, the change in diet, the lack of rest that came from visiting my father in Kuala Lumpur. I did what I could to manage it, but I felt the slow but sure deterioration of my own body even as my father experienced his. I knew, however, that mine was reversible while his was not.

I am in recovery mode. Resting a lot, and sleeping when I need to, and enjoying being back in my own space and eating food that suits me best. My father's condition is irreversible and permanent, lasting and unchanging... he is gone from this world forever, he is no more. Whatever it was that made him unique as an individual is gone with him, never to be seen or felt in its own special manner again. I am but a little part of him that endures. Battered and tired, worn out and exhausted from watching his slow demise and eventually sending him off on his final journey...

While I prayed for the healing of his spirit as I read to him and cried over him I am now seeking the healing of my emotions, my pain and my body from the rigours of the past 5-6 weeks. I hope to get there soon. I hope to be at a place where all is as well as can be, considering the failings of my body and the frailty of my emotions. I think I'll be okay. In fact, I know I will be, eventually. :)

Thanks for reading,

Pav

Sensurround Stress

2009-09-24T14:48:00.002+08:00

Stress is said to be a major part of modern life. It gets blamed for many things... for inducing heart attacks and migraines, to exacerbating depression and leading to higher rates of suicide. Sometimes I feel a tinge of sadness for much maligned stress; in fact it's even a factor in chronic illness. It is said that stress can cause a flare up of Crohn's Disease, or worsen an existing flare. Many times patients are encouraged to learn to de-stress, as if stress were something one could magically remove from life and set aside. I often wonder if this is really possible.

Stress is all around us. I know it's a major part of my life. With 4 children it's hard not to be stressed to some extent. Add in a worrying (not worrisome!) personality, an ailing father in a neighbouring country, a PhD that is begging for attention, and a chronic condition that cries out for me to curl up and sleep in a corner... and well... it's a recipe for feeling stressed. Right out of my brains sometimes. But I think it's normal. Who doesn't have some stress at almost every point of their life? It's all around us... sensurround stress impinging on our senses at almost every turn.

How then should I approach stress? Is it an enemy to be avoided at all costs because, heaven forbid, it could make me ill? Is it an ally to be embraced because, God willing, it will spur me on to greater things? I'm not a Type A personality who thrives on stress... but if need be it does give me a push to do things I might otherwise not do, or put off doing. Certainly it gives me an adrenaline rush that reminds me I am alive and gets me going, but I do know that there are times when I have been overwhelmed by stress and my digestive system gets going too... and I'm unable to physically keep up with the demands of stress on my body and my psyche.

It's quite the fad to speak of methods of de-stressing as if they can be easily incorporated into a busy lifestyle. Yoga is good they say... I should make time for it I am told. Or maybe pilates. Or perhaps even plain and simple meditation. Not quite the "empty your mind" kind which always scares me, because I'm not sure if my mind will return once I've emptied it :) but the "think of a peaceful place" type of meditation. Well, I don't think the people who do these amazing things have ever lived in my house... where the only real chance for a peaceful meditation is at 10pm when everyone is in bed and my dear hubby and I can engage in the "shall we watch something intelligent or a nonsense movie" type of meditation.

We live in a generation of ME people... where everything revolves around the individual. It is loosely believed that if the individual is happy then those around them can be happy. In the pursuit of the individual's happiness comes the concept of personal space, me-time, self attainment etc... the essence of all this being that the individual can only give of himself if he is fulfilled. And so we go off in search of fulfilling our own needs...but I think this is looking at things in reverse. I feel that is in meeting the needs of others that our own needs are met. In making others happy, we ourselves attain happiness. In fulfilling others we fulfill ourselves.

This helps me keep going through the stress I experience daily. Stress is not an enemy, neither is it an ally. It is simply part and parcel of life. I cannot escape it, neither can I overcome it, but perhaps I can ride through it, recognizing that ultimately it reminds me of my place in the larger scheme of things. I will not fall apart because of it... I might slow down if need be, but I will fight the urge to be overwhelmed by it. I will allow it to give me a push if need be, and I will recognize when I may need to step away from things that may not be good for me... but I will not fear stress or avoid it completely. I don't think I can and I don't think I want to either... it reminds me that I am alive!

thanks for reading.
pav

Are You Pregnant, Again? And Other Embarrassing Questions.

2009-08-18T11:31:00.008+08:00

Just last week a couple I hadn't seen for a few years bumped into my husband and me at a hawker centre. We exchanged pleasantries, and did a quick catch up on how many children we each had, and then parted ways to get on with supper. On her way out the lady came by to say goodbye, and in the process asked me that dreaded question... "Are you pregnant, again?" I was shocked... but managed to laugh it off with my standard, "No, I'm just fat!" and we giggled nervously while she confessed to wearing a girdle. When I told my dear husband about it later he laughed and said that the lady's husband had asked him how he managed to stay so slim! Haha! Life can be so unfair sometimes! (and maybe this girdle business is worth investigating!!!)

Why do people ask me this question, "Are you pregnant, again?" from time to time? I already have 4 children, so I have no lack. Maybe that's why. They think I love children and the notion of having them that surely I would want many more, and that is very true. I am in love with the notion of having more! How lovely it would be to have had more children! I really wanted another daughter, but it never happened, and now the time is past. The batteries have run out on my biological clock.

Part of the reason why it never happened is because of Crohn's Disease. When I had an obstruction and had to go on a liquid diet for 8 weeks, I was also put on immuno-suppresants, in particular azathioprine, which is not at all permitted during pregnancy. So I had to give up the notion of having any more children in 2005, when I was a mere 38, and surely could have managed one last child! I debated this with my doctor, I wept tears of sadness when I was alone, I raged against what I perceived to be the imposition of the end of my fertile years... and so it was indeed.

On really hard days I am grateful that I have only the 4 to worry about, and believe me, sufficient unto the day is the worry thereof. On days when things are smooth sailing I wish I had another little one who hung on to me and thought that I was the centre of his or her universe. But then my existing 4 break out in a big squabble and I think that all is well as it is, and if I can get through the day without blowing my top, well then I'd have seen a miracle!

One of the many side effects of being on steroids is that you tend to put on weight, especially around the abdomen and on the face, while your arms and legs remain skinny sticks. I have some of that appearance, which is why people ask me if I am pregnant, and why I just give them the simple and self-depreciating answer that I am fat, because they can't handle the truth, or rather they simply don't want to hear it.

Conversely, I was once asked if I had a wasting disease or cancer, when my weight plummeted and I was very skinny, back in the old days before I was diagnosed properly and the Crohn's was very active. I was so thin and so tired. I just shrugged and said I was unwell, but it was nothing serious. In fact I had no clue what it was back then.

Once, when I was unable to eat much and had been invited to an Indian wedding dinner, I was in two minds as to whether I should attend because I wouldn't have been able to eat Indian food, and didn't wish to embarass anyone. I decided in the end to pack my own dinner, and managed a mix of fruit and salad which suited me then in my "fiber is allowed" days.

I sat at the table, and when food was served and people started helping themselves to the buffet I whisked out my tupperware and began picking at my food. I got some stares, and a few obvious questions, along the lines of "Oh you brought your own dinner?" I felt so weird, and wondered if I'd done the right thing. In the end it was such a relief to go home feeling well, and not have to be ill from food that didn't suit me so I told myself it was the right thing... for me.

I have never done that again, though. I go to dinners and eat plain naan if I have to, just so I don't embarass myself or anyone else. I don't think people can accept packed food in the setting of a big dinner, though I have few qualms about explaining dietary limitations to my host in an intimate setting. Nowadays I simply say, "Cook anything. If need be I can have toast. I'm not there for the food, really, it's the company". And indeed, it usually is... after being home with 4 kids... give me adult conversation or I die! :)

One issue with being on steroids on and off over 12 years is that I have morphed from skinny to not so skinny and then back again to skinny. In between all this I had my younger 2 children... and so my wardrobe has swelled even as I have. I have clothes for pregnancy (finally disposed of last year) I have skinny wear for when the Crohn's flares up and I lose weight, and I have not so skinny clothes a whole one size larger, for when my steroid tummy bulges, and I am putting on weight. And of course I also have the small selection of "What was I thinking when I bought this" clothes. :)

So when I need to I wear something looser and not so fitting, and when I think I can pull it off I wear something a little closer to the skin, though it's hardly too fitting either. How then to deal with the folks who ask you if you're pregnant because you're floating about in a loose blouse or the kindly ones who tell you to your face that you've put on weight? Sigh. "I'm just fat" to the rescue again. And a conscious decision to laugh instead of cry.

At one stage my hair was falling out, and I suspect it was due to one of my medications. I decided to lop off my hair to preserve what I had. Unfortunately this then led to questions like "You cut off your hair?!" (Gasp, shock, horror!) Life as an Indian woman can be hard. It's as if your womanhood is embodied in your hair, which essentially is a bunch of dead proteins. and amazingly grows back if you cut it off. So my hair has been through a lot too... and I just laugh off the gasps of horror...

Food, clothes, hair... just a few of the things that obssess us all on a daily basis... but I have grown to feel that certainly I am more than these, I am more than that which concerns the flesh. I am a soul on a journey in an imperfect vessel. I laugh off the embarassing questions, I look beyond what is impermanent, and I rejoice that if my corporeal dimensions enlarge over time then maybe, just maybe, that's because my soul too has grown, and needs a little more space. :)

So the next time you see someone with short hair in a loose, ill fitting dress, with a bulgy tummy and skinny limbs, with packed food at a wedding dinner... say something kind. It could be me! :)

Thanks for reading!

Pav

Dave Barry's Colonoscopy Journal : Laugh Your Way Through It All!

2009-08-06T23:29:00.006+08:00

I was sent this and it really made me laugh. It's simply hilarious and brilliant. I've been through at least 6 of these colonoscopies, but some patients have had many more. Most people ought to have one somewhere in their lives, so do enjoy Dave Barry's version :) pav

Barry's colonoscopy journal:

======================
I called my friend Andy Sable, a gastroenterologist, to make an appointment for a colonoscopy.

A few days later, in his office, Andy showed me a color diagram of the colon, a lengthy organ that appears to go all over the place, at one point passing briefly through Minneapolis. Then Andy explained the colonoscopy procedure to me in a thorough, reassuring and patient manner. I nodded thoughtfully, but I didn't really hear anything he said, because my brain was shrieking, quote, 'HE'S GOING TO STICK A TUBE 17,000 FEET UP YOUR BEHIND!'.

I left Andy's office with some written instructions, and a prescription for a product called 'MoviPrep,' which comes in a box large enough to hold a microwave oven.

I will discuss MoviPrep in detail later; for now suffice it to say that we must never allow it to fall into the hands of America's enemies.

I spent the next several days productively sitting around being nervous.

Then, on the day before my colonoscopy, I began my preparation.

In accordance with my instructions, I didn't eat any solid food that day; all I had was chicken broth, which is basically water, only with less flavor.

Then, in the evening, I took the MoviPrep.You mix two packets of powder together in a one-liter plastic jug, then you fill it with lukewarm water. (For those unfamiliar with the metric system, a liter is about 32 gallons). Then you have to drink the whole jug. This takes about an hour, because MoviPrep tastes - and here I am being kind - like a mixture of goat spit and urinal cleanser, with just a hint of lemon.

The instructions for MoviPrep, clearly written by somebody with a great sense of humor, state that after you drink it, 'a loose, watery bowel movement may result.' This is kind of like saying that after you jump off your roof, you may experience contact with the ground.

MoviPrep is a nuclear laxative. I don't want to be too graphic, here, but: have you ever seen a space-shuttle launch? This is pretty much the MoviPrep experience, with you as the shuttle. There are times when you wish the commode had a seat belt. You spend several hours pretty much confined to the bathroom, spurting violently. You eliminate everything. And then, when you figure you must be totally empty, you have to drink another liter of MoviPrep, at which point, as far as I can tell, your bowels travel into the future and start eliminating food that you have not even eaten yet.

After an action-packed evening, I finally got to sleep.

The next morning my wife drove me to the clinic. I was very nervous. Not only was I worried about the procedure, but I had been experiencing occasional return bouts of MoviPrep spurtage. I was thinking, 'What if I spurt on Andy?' How do you apologize to a friend for something like that? Flowers would not be enough.

At the clinic I had to sign many forms acknowledging that I understood and totally agreed with whatever the heck the forms said. Then they led me to a room full of other colonoscopy people, where I went inside a little curtained space and took off my clothes and put on one of those hospital garments designed by sadist perverts, the kind that, when you put it on, makes you feel even more naked than when you are actually naked.

Then a nurse named Eddie put a little needle in a vein in my left hand. Ordinarily I would have fainted, but Eddie was very good, and I was already lying down. Eddie also told me that some people put vodka in their MoviPrep.

At first I was ticked off that I hadn't thought of this , but then I pondered what would happen if you got yourself too tipsy to make it to the bathroom, so you were staggering around in full Fire Hose Mode. You would have no choice but to burn your house.

When everything was ready, Eddie wheeled me into the procedure room, where Andy was waiting with a nurse and an anesthesiologist. I did not see the 17,000-foot tube, but I knew Andy had it hidden around there somewhere. I was seriously nervous at this point.

Andy had me roll over on my left side, and the anesthesiologist began hooking something up to the needle in my hand.

There was music playing in the room, and I realized that the song was 'Dancing Queen' by ABBA. I remarked to Andy that, of all the songs that could be playing during this particular procedure, 'Dancing Queen' had to be the least appropriate.

'You want me to turn it up?' said Andy, from somewhere behind me.

'Ha ha,' I said. And then it was time, the moment I had been dreading for more than a decade. If you are squeamish, prepare yourself, because I am going to tell you, in explicit detail, exactly what it was like.

I have no idea. Really. I slept through it. One moment, ABBA was yelling 'Dancing Queen, feel the beat of the tambourine,' and the next moment, I was back in the other room, waking up in a very mellow mood.

Andy was looking down at me and asking me how I felt. I felt excellent. I felt even more excellent when Andy told me that It was all over, and that my colon had passed with flying colors. I have never been prouder of an internal organ.

ABOUT THE WRITER

Dave Barry is a Pulitzer Prize-winning humor columnist for the Miami Herald.

On the subject of Colonoscopies... Colonoscopies are no joke, but these comments during the exam were quite humorous... A physician claimed that the following are actual comments made by his patients (predominately male) while he was performing their colonoscopies:

1. 'Take it easy, Doc. You're boldly going where no man has gone before!
2. 'Find Amelia Earhart yet?'
3. 'Can you hear me NOW?'
4. 'Are we there yet? Are we there yet? Are we there yet?'
5. 'You know, in Arkansas, we're now legally married.'
6. 'Any sign of the trapped miners, Chief?'
7. 'You put your left hand in, you take your left hand out....'
8. 'Hey! Now I know how a Muppet feels!'
9. 'If your hand doesn't fit, you must quit!
10. 'Hey Doc, let me know if you find my dignity.'
11. 'You used to be an executive at Enron, didn't you?'
12. 'God, now I know why I am not gay.'
And the best one of all:
13. 'Could you write a note for my wife saying that my head is not up there?'

The Need for Normalcy

2009-07-18T20:27:00.004+08:00

Most of us relish the thought of being "normal'... though perhaps there are moments when we wish we were the exception. "Normal" can mean many things to many people, and I don't intend to be controversial here. I have nothing against being "unique", or "extraordinary"... in fact I think all of us are unique, though of course that implies that none of us are :) . I use "normal" to mean a "functioning" member of my society as loosely defined by the rules and norms of the society in which I live. Someone who can fulfill their different roles within the family and society, manage themselves independently, contribute to society and not be a burden. Hopefully, someone who enjoys life a little along the way. I think that's fairly normal :)

The need for normalcy is never greater, in my opinion, than when one lives with chronic illness. I never thought of myself as being anything more than a normal person living my quiet, normal life until my life was interrupted by illness. Grappling with the symptoms of Crohn's Disease on a daily basis meant that my life was not normal... but I didnt want to think of myself as being "abnormal" either. What was my life now, and how was I to think of myself, and to a people pleaser like me... another important question was "How would people perceive me?"

After 12 years of disease I have found some semblance of normalcy to call my own though it may not be normal by the standards of most people. The difficulty with a disease like Crohn's is that flare ups sometimes occur unannounced and when that happens whatever plans I may have had, whatever ideas I may have conceived of life in a steady state, these plans go out the window. Or, perhaps more aptly, are flushed down the toilet :) .

There have been countless occasions when I have thought that I have seemed well enough to do many things I hadn't been able to do in the past, only to find myself in a flare up and unable to do what I wanted. How upsetting, and how depressing these moments can be, and how difficult it is to cope with the despair I have felt, and to communicate that to others. It is so hard to plan forward, and to act on those plans, and sometimes when I try, I am caught up in the difficulty of trying and failing, and coping with the emotions that all that entails.

This is the difficulty then in trying to rearrange my thoughts, my emotions, my behaviour, my actions to suit my body and to live within the confines of illness... to accept the boundaries and limitations, to accept the spanner in the works caused by flare ups and yet to still love myself and life, and live to the fullest.

How does one explain all this to others, when one barely comprehends it one's self? After 12 years the pain of disappointment has not dimmed. Each flare up is painful, each one is an emotional upheaval, each one brings tears. How do I bridge the gap between what I feel when I am living through a flare up and can barely manage myself and my emotions and my pain, and yet have to worry about the needs, cares and perceptions of others? It is difficult. It is incredibly difficult. But it is important to try because in doing so, one approximates a semblance of nomalcy... because I believe that if we looked beneath the surface of each other's lives we would find that many of us are doing the same thing. All of us are trying to live normal lives despite whatever is going on within us.

This belief helps me cope, and gives me compassion for others. It also gives me compassion for myself. I need that from myself. I need to forgive myself my own failings, weaknesses, physical limitations and the myriad of other things that I perceive to be the negatives in my life... and learn to embrace me. In so doing I can embrace others, and with a renewed compassion grown from my own sufferings I can better understand others, and help them know that they too are normal, that whatever they are struggling with, whatever pain and hurt plagues them, it is a common tie that binds us as people. We are all struggling in our our individual journeys, and that makes us all normal.

Thanks for reading,

Pav

Great Expectations

2009-06-16T11:04:00.005+08:00

We all have expectations of ourselves and our lives, and act accordingly, most of the time. I had great expectations of myself... in terms of being a wife and a mother in addition to being a daughter and a sister and a friend... all of the roles in life that I had to play. I wanted to give the best that I could in all things and be all that I could to all people. Ultimately, chronic illness changed my life and my perspective on things.

It's already a lot to ask of one's self to want to give the best and be the best... and when illness comes into the picture, well, the script needs to be rewritten. It needs to include time off for plenty of rest, for pain, for visits to the doctor, for hospital stays, for side effects from medication that make you feel exhausted, for down time alone... it is no longer possible to be all things to all people.

When I started having symptoms of Crohn's Disease I was plagued by guilt as well. I felt that I was constantly failing. I wanted to do so much... but I couldn't as I was crippled by the symptoms. In the end I felt like my world was crumbling. The world that I had built in which I was, to some extent, in control over what happened in the course of the day, and the world in which I had the energy to pursue my passions was falling apart.

I was reduced to a very simple and basic motto : "Just get through the day". That was all I lived for and all I wanted after awhile. I reduced the expectations I had of myself, and in the process the expectations of everyone I had around me in my family. It was no longer the most important thing that "if something was worth doing it should be done well or not at all". For a season in my life I did very little because I knew I couldn't do it well... but now I am happy to accept that some things don't have to be perfect, and that with many things in life just giving what we can at that point in time, no matter how little it may be, is truly enough.

I still struggle with guilt. Not a single day passes when I don't think about how I could be so much more than what I am... and yet I also realise my limitations due to chronic illness. Not a day passes when I don't remember what my life was like before Crohn's... and I miss my past life and the simple joy I had of being able to do whatever I wanted. If I had known then that I would have had to live with chronic illness and all its debilitating symptoms I would have drunk so much more deeply from the cup of life... I wouldn't have wasted a single minute of time in sadness or inertia... I would have truly enjoyed the freedom that I had, but didn't truly appreciate, of life with a healthy body.

How to move forward then to living a life with chronic illness? Guilt and regret, sadness and sorrow... these visit whether I want them to or not, but I do not let them linger. I live for the day, but I also want to plan for the future. What unit should I use? The week, the month, the year? Five years from now? I do not know. I only know that I must think ahead to something better so I can get through this moment.

Hope keeps me alive. Hope that tomorrow will be a better day.

pav

My Friend Brenda and Her Journey with Crohn's

2009-06-12T15:05:00.006+08:00

Over the past 12 years I have met many patients with Crohn's Disease and Ulcerative Colitis, and some of them have become close friends.

One of them is Brenda. We linked blogs today, and her link is on my page. If you would like to know how someone survives the removal of their colon and life with a colostomy and a bag, well visit Brenda's page. I admire her courage, and her resilience, and her sense of humour, and her "Never Say Die!" attitude.

Thanks for linking up, Bren, and let's do lunch soon. My treat to celebrate my becoming a blogger. haha! We should go to one of those internet cafes and munch AND blog at the same time... :) oooh, I'd feel so young and hip and cool... for a couple of hours it would be refreshing!

pav

My Pre-Diagnosis Days : Living with the Unknown

2009-06-11T16:08:00.011+08:00

A friend of mine asked me what symptoms I had that led to my being diagnosed with Crohn's. I think that's a very timely question, and so here I am, writing about the story of how I came to be diagnosed with Inflammatory Bowel Disease, specifically with Crohn's Disease.

As the phrase "inflammatory bowel disease" connotes, the bowels are involved. In the case of Crohn's the entire digestive tract from start to end can be implicated. My symptoms largely involved my colon, and in particular my terminal ileum, where the small intestine meets the colon or large intestine. Deep ulcerations work their way through the mucosal wall, and scarring occurs as part of the cycle of healing and re-inflammation... over time these scarred areas cause obstructions that may need to be surgically removed.

As it is a disease that involves the bowel, unsurprisingly the symptoms revolve around very earthy things... the sort of stuff we don't talk about at the dinner table, but maybe in blogs :) I had watery diarrhoea up to 10 times a day, colic abdominal pain, low grade fever, joint pains, and reactive athritis in my feet.

The diarrhoea first began during my first pregnancy in 1995, and it was thought that perhaps it was a hormonal thing and left untreated, which suited me fine as I never even took a panadol during my pregnancy. After my son was born the diarrhoeas continued, though I had less and I had few other symptoms. I then went on to have another child in 1997, and shortly after my second son was born, my health went downhill rather quickly.

I insisted on nursing him, and I remember that I had 8-10 watery diarrhoeas, and 8-10 feeds per day... in no time at all I was very thin, and quite ill, and ended up in hospital. I stopped nursing and went on some medications, and got a bit better even though I was not properly diagnosed at that time. Unfortunately, I then developed a fistula in 1998, which is a tract/tunnel that develops between the intestine and another organ...and fecal matter gets trapped in there causing infection and swelling etc. In my case it developed perianally and required surgery... my very first surgery which wasn't much fun at all. The hardest thing was sitting in salt baths for months afterwards every time I went to the toilet so that the area wouldn remain clean and uninfected. I remember reading through many novels while soaking... and not leaving home very much at all.

When my maternal grandmother passed away in 2000, I was deeply saddened and quite stressed... and I developed ulcers in my mouth... this in combination with the fistula and the diarrhoea and joint pains led to my being diagnosed with Crohn's as they are typical symptoms of the disease. I was given steroids (prednisone) and since I responded to them that was taken as another sign that what I had was indeed Crohn's.

My inital response was to completely break down and cry... I think the terms "incurable" and "chronic" terrified me. I bought a book to learn more about it... the chapter on cancer scared me even more! I was depressed, and was referred to a psychiatrist for help in dealing with depression. It was very useful indeed to have someone to talk to and who could help me deal with many issues, some of which I still grapple with as the disease is chronic... it never really goes away.

The best thing, however, about being diagnosed was that finally I was given the right medication, and it worked wonders for me. I had energy, I wanted to go out again, and do stuff with the family... I found my life again! The diarrhoeas became less, and I felt energised and alive. The steroids had their own issues...I found that I had mood swings and was easily irritable, and edgy, and ultimately they affected my bones. I later went on other medications to spare myself the side effects of steroids.

I felt well for a few years, and then decided to have another child in 2002. I decided to go off all medications during pregnancy and I found that my symptoms went away, and I was very well. Someone joked that maybe pregnancy was my cure for Crohn's... I joked back that I would certainly need help raising 15-20 kids if that was the case! Unfortunately though, within 4 months or so after delivery, the symptoms returned... as the body readjusts hormonally etc... and so I was back at the hospital, and on various medications again.

My fourth and last pregnancy went well too. I was on some medication at that point, and able to eat and had few diarrhoeas, though I was severely anaemic. It has taken me 5 years post-delivery to build up my iron levels...

In the process of living with Crohn's I have "starved" for 8 weeks in 2005 when I did not eat but only drank a special drink 8 times a day in order to avoid intestinal surgery, I have had 6 colonoscopies, I have gone on immuno suppressants and other drugs which have troubled me with their side effects, and to some extent, lost a lot of the essence of who I really am, or who I thought I was... I am still reworking the new me... and every time I think I know who I am the Crohn's flares up again, the carpet is pulled from under my feet, and I am at sea.

No one knows the cause of the disease, and hundreds of researchers are spending millions of dollars trying to find a cure. It doesn't really matter what I eat or do... I can ameliorate the symptoms through destressing and dietary changes, but I cannot get rid of it through any act of my own. The fact that I have retained some measure of my sanity through all of this baffles me... and I remain grateful for the loving care and concern of family and friends who have suffered alongside me. I don't know why this disease came to be a part of my life but I like to think I can still find a way to live with it. I have to, and I want to, so I shall!

(for more detailed information on Crohn's Disease, Ulcerative Colitis ie the two Inflammatory Bowel Diseases please visit the CCFA website. The link is at the top right corner of my blog page.)

Thanks for reading!

Pav

The Personality of Pain

2009-06-09T14:45:00.003+08:00

Pain is a recurrent companion of most people with chronic illness. It isn't a friendly, nice companion one desires to keep by one's side... it's one of those forced companions that travels with you whether you want it to or not. Maybe "companion" isn't the right word, but it'll have to do for now.

Does pain have a personality? I like to think it might. I sometimes think about the intestinal pain I experience because of my Crohn's Disease, and I amuse myself by personifying it.

Pain is very loud, and lets me know when it is here. Never one to announce its entrance it barges in unheralded. "Pay attention to me", it screams. "I am here, whether you want me to be or not". "So you thought you got rid of me, did you? Haha!"

Pain can also be selfish and refuses to share me with others. It wants me all to itself. When I try to explain how I feel to others, I can never quite do that effectively. Neither can anyone enter into my experience of pain. I am alone with pain, despite being surrounded by a multitude of people, and at times, when I am already feeling like a wallflower, pain practically glues me to the wall.

In the early days of my illness, prior to diagnosis, I used to curl up at night and cry myself to sleep. I didn't know what was wrong with me, why I was in pain, and I couldn't quite explain it to anyone. My loved ones were bewildered, I was mystified and frankly, depressed, and quite miserable. I had two young sons then, and getting out of bed everyday was a major challenge. Leaving home was something I rarely did, though I was a regular fixture at the playground. Close enough to home in case I needed a toilet or to rest.

Diagnosis helped me tremendously. It took 3 years of symptoms before I was diagnosed. While it came as an utter shock to be diagnosed with a chronic and incurable disease, I was relieved that finally I knew what it was and there was some kind of treatment for it. The first benefit was that I experienced far less pain. Of course the medicines had side effects, and they were awful, but the lessening of pain was simply wonderful.

I didn't miss pain... it didn't let me. It came back. It still does from time to time. But I feel differently about it now. I don't cry as much as I used to and I know that there are ways and means to manage it, and that it is part of my life. I know I will feel better soon enough as I have in the past, and so I wait for that time to come. I have come to accept pain as a visiting "companion". I don't hate it, neither do I expect to be totally rid of it but I certainly don't embrace it either.

Over the years, I realise that pain has changed me. I used to be able to take a fair bit of a pain. My classic example being the fact that I gave birth to 4 children without pain relief. Really, I did! I wonder why now, in retrospect, but that's another story! :) I do know that I have become fragile and my emotions are so brittle that now a little pain seems magnified to me.

My child's scraped knee from falling off a bicycle makes me gag, my stomach clenches, and I cannot bear to look at it. I go to the dentist and am paralysed by fear and nausea, and cry... until the jabs of anaesthesia kick in and I can manage a root canal... I watch suffering and pain on tv or read about it in the papers and I weep. I am weakened internally in some way, but I cannot explain why. I think that years of pain have taken their toll, and in some way they have sensitised me, not to make me insensitive to pain, but to give me a heightened sensitivity.

Most importantly, I have come to accept that no one can share my pain, no matter how much they may want to, or how much they love me, and my suffering is unbearable to them. They simply can't. Pain is very personal. Fortunately, I have come to a place where I no longer suffer in silence but I am able to tell the people in my life that I am in pain and they understand what I mean by that and what I need. I surround myself with the people who love me and accept me with not only my own failings, but with the added burdens of chronic illness and accompanying pain.

So, pain, that old companion of the chronically ill, when you come again I will be prepared, and I know your visit won't be long and I know I can cope because I understand our "relationship", and have the comfort of those who help me manage your visits.

Just pack a small bag for the next visit. After 12 years you've really overstayed your welcome :)

pav

My First Post!

2009-06-08T15:46:00.000+08:00

Finally, I have begun writing a blog. I have thought about it for awhile, and actually started this page late last year... but it wasn't until today that I have finally decided that I am ready to write about my life and to share it openly with other people.

I have had Crohn's Disease for 12 years now, and in the process so much has happened to me as a person directly because of chronic illness, and also as part of the usual happenings in life. Along the past 12 years I have come to meet other people with Crohn's Disease, and it's sister condition, Ulcerative Colitis (UC). I have also gotten to know people with other chronic and incurable diseases, like rheumatoid athritis and SLE (Lupus). In all my many encounters I have been amazed at the strength and resilience I have seen in so many people, and to some extent I have found them surprisingly, even in myself.

This ability to carry on despite what life throws at one has become a minor obsession with me... I am now looking at how people cope with Crohn's and UC as part of my studies. I remain acutely aware that I am trying to live through a chronic and incurable disease myself.

Some days I cope, and other days I don't. Some days I am fine and functional and other days I am too exhausted to speak. Some days I laugh a lot, other days I weep a lot. I want to share this journey with anyone who will read about the minutiae of my existence, not only because I feel a compelling need to share the nitty-gritty details of my life with other people, but because deep down inside me I do believe that every meaningful experience each one of us has had and will have has the capacity to encourage someone else.

In that spirit I begin my blog today. I promise that it will not be too dark, that there will be lighter moments, and that I will try not to be overly self indulgent and that I shall endeavour to make the experience of sharing my life with you as interesting as possible. Oooh... sounds like a tall order. I can only try. :)

pav