What if you woke up one morning...

What if you woke up one morning with a ringing and buzzing in your right ear and in 24 hours or so you discovered that somehow your auditory nerve in your ear was inflamed, half of your hearing is gone in that ear, and you have to start a therapy of 3 powerful drugs to save your nerve and hopefully restore hearing?

It just happened to me. Two days ago.

I kid you not. I sat in the audio test lab reception area in a daze after an audio test yesterday and its results were explained to me. My left ear hears perfectly, but my right ear has lost 50-55 percent of its ability to hear. Just like that. Overnight. My ENT doctor sent me to the audio test after a scope showed no physical defects. After the test he said it had to be an inflamed nerve and started me immediately on 40 mgs of steroids to reduce inflammation, an antibiotic, Klacid, in case of some bacterial element at play, and an antiviral, Acyclovir, as the herpes zoster virus that causes chicken pox and shingles can affect nerves. So I am drugged up and hopefully it isn't too late to save my hearing.

I can still hear out of my left ear quite well. Strangely all noise seems exaggerated, I think because my ears and my brain haven't compensated for the loss yet. I don't mind too much at present. It just means my body hasn't gotten used to hearing loss, and I don't want it to get too cozy with the idea. Fight it!

Fight it? How can I fight anything? I have been on Humira for Crohn's Disease and it has helped but at the same time it has had to lower my immunity in the process. I am fair game to opportunistic infections. A virus that in a healthy person might just be a mild cold could do more serious harm to me. Apparently this might have just happened.

Shortly after I began Humira last year I had shingles on the side of my upper trunk. No nerve damage, not too much pain but a very tender patch of typical shingles pustules. Could this ear problem be a recurrence of some herpes zoster attack? Why on my ear nerve? Who knows? There are no answers to the why's and wherefore's. Just a desperate need to cope with whatever is on my plate yet again.

What is on my plate? I don't know for sure yet and that makes coping rather tricky. I just have to live one day at a time. I am doing my utmost to get better. The ENT doctor said the bad news was what has happened to my auditory nerve but the good news is that I went very early to see him and this will help greatly. I hope so. I really, really hope so.

I remember thinking that at least I could still see. My optic nerves are pretty okay. Some days my vision is blurry but I cope. Often I am very sensitive to bright light. I avoid going out in the sun. My vision is good most days and I am grateful. Sitting alone after the audio test I felt tears fill my eyes. But the thought came to me that I could still see. Yes, I can and talk, and smell, and feel, and walk, and think and put thoughts into action. I can do so much! There is hope!

I don't believe in coincidences. As I sat there in the audio lab reception area, waiting for my test, I was seated with a family. One son was deaf and had speaking difficulties. He was playing a game on an iPad with his younger brother, and kept clapping loudly when his brother did well. I found the clapping too loud, and annoying. But I said and did nothing beyond an occasional look. His mother was with him, and as a Mum myself I know how horrible it is to have others harshly judge our kids. And he had serious medical issues. Far more serious than mine. He was born with congenital defects and had never heard a single sound, or he had some level of severely impaired hearing. The audio test lab was a place he came to often, I could tell. I tried to feel sympathetic but not obviously so... it was on the inside that I had to tell myself to stay calm in the face of a few claps of obvious joy. He was coping, the best way he could. I gave him that space. I hope he can hear with all the technological aid available to us, and that he grows up to live a happy and fruitful life.

The ENT doctor that requested my audio test had written down on the request form that I was to be tested as a candidate for a cochlear implant. I didn't know what that meant, thinking simplistically that as an ENT surgeon he might have been a little trigger happy to get me on the road to surgery. The cynic in me was quietened when the technicians discussed it and one of them said it just meant an audio test for hearing ability and impairment. Oh, okay. Afterwards I read up about cochlear implants otherwise known as a "bionic ear". I remembered Jaime Summers, the Bionic Woman from my childhood tv viewing. She had a bionic ear. haha! If my hearing doesn't come back on it's own I have options. It's not the end of the world. I must remain positive and hopeful. I have so much to be grateful for, and indeed, I am very thankful. That leads to contentment, and that brings peace. I need peace, deep in my soul otherwise I cannot live with myself and I can't imagine anyone else wanting to live with me. By choice, that it is! My dear husband and family don't have too much choice in the matter. Not really. I am, thankfully, and very contentedly married to a sweet man who takes his marriage vows very seriously, and deep down inside me I know my kids are happy, so they're here for the long haul. I, too, must be present for the long haul. And in a state worthy of them. I try. I try very hard indeed.

But yes, what if one morning you woke up and something failed to work in your body? Some part of you sustained an inexplicable impairment. Somehow in the middle of the night, or possibly in the preceding day, some sinister agent got into your system and played havoc resulting in your not functioning fully and normally? What would you feel, how would you react, what would you do, how would you cope? One never knows till one walks that path. I just did. It's hard work. I hope it'll be a long, long time before this happens to me again. Hopefully it never will.

At first I was annoyed by the noise, then worried because it persisted all day, troubled next that I would never sleep peacefully again, anxious to get it sorted out soonest, shocked to hear the news (with my good ear, no less!) and then deeply saddened to know what was happening.

Have I moved beyond "deeply saddened"? No, I haven't. It's a bit too soon perhaps. I find myself tearful from time to time. I feel overwhelmed by the effects of the triple therapy on my body, especially the watery diarrhoeas caused by the antibiotics, and I always feel depressed when I have to take antibiotics . I think every good thing is drained from me. It exhausts me. It takes the joy out of me. I spend all day in my room running to the toilet when I have to, feeling sore, and tired, and so totally and utterly fed up. Despair fills me, tears well up, I cry, I feel better. This is a cycle that has occurred all day today. But I tell myself I have a week's medications and then I retest my hearing next Thursday. By then if there is to be healing it would have taken place. I will know. I will find my feet, I will take it all in my stride. I must.

I am reminded never to take things for granted again. Each part of my body, each function, each special role is a gift to be enjoyed, to be cherished, to be looked after to the best of my ability. I don't know what I could have done differently to preserve my auditory nerve. I am not fond of loud music, if anything I have heightened sensitivity to noise. But this came out of nowhere. And so while I didn't have a chance to better manage my nerves or protect my hearing or fend off viruses or whatever little I could have done... I have to say I miss my hearing in my right ear. I can barely hear anything in the normal range with it. I miss it. Very much.

Yes, it's not my fault. Maybe I can blame Humira, I really don't know. It isn't important in the big picture. Who, what, where, how, why... no answers are forthcoming. Only time will tell if my hearing will be restored. Come what may I will cope, life will go on, I will be here, as always. As I have said elsewhere in my blog, I am not the sum total of my bodily parts, I am so much more. Take away my senses, my body if you must... I am a soul, trapped in an imperfect vessel. Someday I will be free. But not for a long while yet.

Thanks for journeying with me, and for reading.

Pav

Painfully Human

Pain. Bone pain. Joints hurt too. Muscles ache in tandem. Pain is my constant companion. 


Fragile. Raw nerves. I feel intensely. Everything affects me deeply. I am human after all. 


Upset. Easily rattled. Walking is difficult. Pain crippling yet manageable. Often it comes, goes, returns. 


Peace. Desperately needed. The soul's balm. A gift from God. Indeed, I am painfully human. 



Thanks for reading,


Pav

The Sublime Strength of a Simple Smile

For the past two weeks I have woken up and found myself in tears shortly after I realize that my body is strangely glued to my bed. Glued in the sense that I find it incredibly hard to move. Muscles are sore, bones hurt, and I have had flu like symptoms for awhile too. Every morning I get out of bed just to eat a couple of slices of bread with tea and then take my medicines and I wait for their magical effect. Antihistamines and pain relief meds keep me going through the day. I don't feel up to going anywhere or doing anything and I am beginning to feel like a social recluse.

Happily though, in the midst of all this, my blood work shows that the Crohn's is under control. Humira is helping me and I am so glad for that. But Humira also causes side effects such as flu-like symptoms etc. So I wonder if I am just having a prolonged flu or if I am having a reaction to the Humira. My doctor says that my liver enzymes are on the rise and if they continue to rise I may have to discontinue Humira. I feel deep despair at the thought because I have tried everything else there is and Humira actually works for me. One step at a time, I guess. Time enough to see how things are in due course. No point worrying away now, best to save some worrying for later :)

Tears are so close that I cry a few times a day. I feel fragile. Very fragile. Small things cause me to cry. Something sad on tv and I cry. Some sad news in the papers, and I cry. One of my kids is gruff with me and I feel it in my heart, and I cry. My dear hubby says something sweet to me, and... you guessed it, I cry. I am crying as I write this! Oh dear me. Reduced to tears just by life itself. How can this be? I do know that the flu can be depressive. I am sure on some physiological level that is borne out somehow. Yah, like maybe dopamine levels are severely reduced because white blood cells need it to stay happy while fighting off infections! (what would I know? Nothing much obviously!)

I try my very best to be cheerful when the kids come home. I dish out hugs and smiles aplenty and listen to the debriefing of the day's events from the more loquacious younger ones and squeeze out monosyllabic details from the reticent older kids. I tell myself that I am well, it's just the flu, I am not in any major pain, I will make their time at home as pleasant as possible, and so I smile. Not incessantly like the Cheshire Cat or my kids would be worried for me, but just small smiles here and there to convey joy, love, acceptance, understanding etc. In fact a whole myriad of emotions and states can be conveyed by a simple smile.

There are so many cliches about smiles. I don't want to repeat them here. But I do want to acknowledge that smiles are powerful. There is latent strength in a smile. It blesses the one who smiles and the recipient of the smile. It empowers the smiler to rise above their situation and to be more than what they feel. I find that when I tell myself I have to be pleasant and I smile even if I don't feel like smiling, I ultimately feel more pleasant myself. In fact, smiling is to be recommended especially when you don't feel like smiling because of its transforming power. Even if the smile doesn't quite reach your eyes, it's getting there slowly. It's almost a process, if you like. Eventually, with sufficient usage, the smile will reflect a sense of wholeheartedness, starting from the heart and radiating through the eyes. My mantra through this flu-like phase is to "Cry Less, Smile More". It's retraining the heart and the eyes and basically the mind to get through some tough times with the twofold methods available to me... Crying and Laughing (Smiling gone crazy). I hope to cry a lot less, and smile and laugh so much more.

Of course, it's very hard, in fact, it's positively impossible to smile when you are in a lot of pain. I don't remember smiling when I have been in the throes of a terrible painful episode of colitis... in fact all I have ever wanted to do was to curl up and cry and be left alone and not have to talk to a single soul. Yes, sometimes pain is so overwhelming the body cannot bring itself to do anything except curl up and try to get through the pain. Smiling then would be ridiculous as well as impossible, really. No, there are moments of intense pain and grief etc when smiling is out of place indeed.

But on average, my life is not filled with intense pain or grief. It's filled with many good moments and wonderful things. Yes, this wretched flu has got me down. Maybe it's here to stay as long as I'm on Humira. Maybe not. But I can smile now. I must smile now. For my own soul. So I can be all I need to be to the ones who depend on me but also so I can be a better me. I am so much nicer when I smile. I know I am and folks have said I have a lovely smile. I believe them :) Anyway, all those muscles droop and make you look jowly and old if you don't use them and smile enough. Sometimes you look at photos of older people and you can tell if they've been happy by the look in their eyes and the lines on their faces. I want to grow old with a happy face. I want people to look at my photo and say,"Ahh, there's a face that shows she was happy. All those smiling lines and crow's feet, and that irrepressible twinkle in her eye!". Either that or they will say "What a grouch!". Oooh, I best get working on those smiling muscles. I'll lose them if I don't use them!

Smile so I can be transformed on the inside, smile so I can age well on the outside. Smiling is good for my body and my soul. That's what a simple smile can do. Here's sending you a smile today. Send it on to someone who needs it. Bless, and be blessed!

Thanks for reading,

Pav

The Perils of Perfection

Today I feel tired. Muscles hurt and my bones feel weary. I don't know why. My guts are doing fairly well but I did have a busier than usual weekend. After a long time we managed to get everyone off to church and off to a family meal afterwards like we used to do many months ago. Events intervened health wise and I got so weary of going anywhere for awhile and so I spent weekends like I spent my week days, mostly resting at home.

My choir mate's daughter passed away last Sunday after a long struggle with brain cancer. I left the sanctuary of home to attend her wake and I sang with the choir at her funeral. It was a meaningful funeral tinged with sadness as she was only 18 years old. I cried tears of sadness for her life cut short and the sorrow of her family, especially her parents. It was a privilege to sing at the funeral, and I also got to meet some of the members of the Youth Choir from church who sang with us. A seed of an idea planted itself in my mind. Perhaps my daughter might like to join the Youth Choir?

My daughter loves music and singing and drama and anything to do with performing. I asked her if she would like to join the Youth Choir on Sundays at noon, and she was very, very keen. So we all trooped off to church to support her, and to have lunch afterwards. It was a good time. Some of us went more willingly than others, some needed minimal prodding, some went only because of the hope of a promised lunch. :)

As I sat there tears filled my eyes at one point. The point where the priest asked us to pray silently. I prayed for my children. I thanked God for each of them and I asked that He would draw them close to Him and work in their lives. I felt I had to ask that because I know in my heart of hearts that something as personal as faith has to be a gift from God. It isn't something I can pass on, or force onto my children. I'm constantly plagued by the thought that because I have been unwell for all of my children's lives that I must be to blame for any shortcomings in our family, though when I think deeply about this I do feel I am being too harsh on myself.

Living with chronic illness means that it can be difficult to be consistent. I find it very hard. I always felt going to church every week was the right and perfect thing to do. I wish I could be on that pew in church with my children all scrubbed and shiny every weekend and looking like they really loved going :) I have found it so hard to keep going anywhere week in and week out. It's exhausting. It's tiring. Is it even necessary? Does God understand? Will others?

I am only too aware of my own weaknesses, and those of my children. I know what we all need to work on. I know what we all need more of, and what we need to prune from our lives. More love, more generosity, more kindness, more charity. Less selfishness, less meanness, less unkindness, less squabbling. Basically take out the negative aspects and fill your life with the positive opposites. :) It sounds so easy but it isn't really, and it's a lifetime's work.

I have finally outgrown the need to be perfect... I used to think my kids were the ultimate reflection of me, and so if I was perfect then they too would be perfect. But who judges the perfection in us, and how can our fellow man judge when they themselves struggle? As I sat in church I thought of my children and their different personalities, the different journeys each must take in life, the different career paths they might pursue, their different giftings and talents, and I realized that in actual fact, it's largely beyond me. It isn't up to me at all. They have their own lives to live and the more I try to force them into a mould that reflects me, the more likely I am to push them away, and derail them from becoming who they are meant to be. It isn't about me. It's up to them to make the most of every opportunity given to them, to decide on their futures, to explore beliefs and take ownership of their faith, and to find their path in life.

I wish that I could easily cut loose from the myriad of expectations that I perceive to be important. I expect a lot of myself, and I think I expect the same of others. When I am too tired to do much I get overwhelmed by guilt sometimes and I feel I am to blame for many things. I see failings and weaknesses and I think that if only I had been well, and more actively involved and doing so much more this particular weakness in this child, or this imperfection in myself would not exist. And so guilt eats at me, leading to self blame. Guilt and blame born out of some need to be perfect. But I push them away. I must, otherwise it would be hard to carry on, and carry on I must!

I told my dear husband how I felt and he said to me that it's not about blame, and that we can only do the best we can. I have told myself the same. Don't blame myself. Do the best I can. If it's just a tiny effort, then so be it. Do better next time. It is the heart that matters. I could sit on a pew every weekend and never be touched and never know the goodness of God if my heart was hardened. I could take my children there everyday but if God doesn't speak to them then it's a pointless exercise. And God makes all things beautiful in His time. Not mine.

I don't believe in coincidences. From the sadness of a funeral something beautiful was born. I think I met the members of the Youth Choir quite by divine appointment. The Youth Choir is exactly what my daughter needs at this point in her life to keep her faith meaningful to her. It's given us a fresh approach to something very central to my heart : functioning as a family that supports each other, and loves God.

One of the things I remembered from church yesterday was this : "When God calls us to do something He doesn't expect us to always succeed, but He does expect us never to quit." I like that. I do what I can. If I succeed, super! If not, keep going. Never give up. Certainly motherhood and chronic illness make for a dramatic ride... but I'm allowing myself to fail, I'm not expecting perfection, and I'm not giving up.

Thanks for reading

Pav

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

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

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

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

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

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

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