Friday, December 2, 2011

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!


Saturday, February 5, 2011

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.


Monday, January 10, 2011

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.