Wednesday, January 25, 2012

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.


Wednesday, January 18, 2012

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.