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
