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Living with a chronic illness
After getting over my initial shock at being diagnosed with CML a couple of years ago, I’ve never really thought about the implications of living with a chronic illness. For the most part I feel well, with only minor side effects from my medication. I don’t need to do a lot to manage my illness apart from take my daily medication, have the occasional blood tests and even more occasional bone marrow biopsies.
Of course there are issues with long term use of any medication. As the current treatment for CML is under 10 years old there is no data showing very long term side effects. The front line treatment manages the disease, but doesn’t cure it, so it needs to be continued indefinitely. However, I don’t think too much about those issues. Data is showing so far that side effects tend to decrease with time on the drug (although whether that is a continuous trend is not known). Besides, as I do not have a compatible bone marrow match anywhere in the world (at this stage, the search is continuing) I’m not eligible for a bone marrow transplant. And a transplant comes with a whole other bag of issues. So I have no choice but to keep taking my meds.
Over the last couple of weeks I’ve begun to realise other implications of living with a chronic illness. It seems I’ve moved to a new chapter in the diagnostic handbook. Now when I go to my GP instead of being in the category of
This is probably such and such. It could be something else, but the statistics say it is very unlikely to be. So we’ll treat it as such and such
I now get
This is probably such and such. But because of your CML we’d better run a few tests just to make sure it’s not something else
I’m beginning to cultivate a growing list of specialists and appointments. I’m finding it a little difficult to keep track of everything at the moment. Yesterday while at Little Mermaid’s swimming lesson I received a call to let me know that Mr Russell had a cancellation at 3:15 that afternoon. Would I like to take the appointment? I couldn’t remember which specialist Mr Russell was or what I needed to do for him before I went. I was trying to think of babysitters while I was talking on the phone (making no sense at all I might add). It was all a bit fuddled.
Then at the appointment, how much information do they need to know? Do they need to know about the other specialists I’m seeing, the drug side effects I’m having, anything else? My problem is that unless the doctor asks me something specific, I tend not to relate one thing to another and don’t think to tell them about it.
I’m not really sure of the best way to manage this. Perhaps I need to create a little dossier to carry around with me - or is that going a bit overboard?
So many questions! If you have some suggestions I’d love to hear them…please.
Wow … just read your first story (diagnosed with CML) and then this one. You certainly are living in ‘interesting times’.
Your dossier idea sounds like a good idea to me. I’d most definitely compile a list of all the meds you are taking. If you keep the dossier with you it might also be helpful should you ever be involved in an accident and need to go to the hospital.
I think of your dossier a little bit like the “dog tag” I had to wear in my Swiss army service time that showed amongst other things my blood type. Your dossier would be just a more detailed “dog tag”.
June 19th, 2008 at 5:44 pmGood thinking Mark. I’d never considered the accident scenario. I was worried I was being a little bit anal with the dossier idea. I have medication details in a folder at home, but maybe a detailed portable version is the way to go.
The research and testing that goes into treating chronic diseases is just phenomenal. I’m totally in awe of the people involved and fascinated by it all (not that I can understand 1/10 of it).
June 19th, 2008 at 5:59 pmMy daughter has had a lot of “mystery” medical challenges the first few years of her life and we’ve moved to a new state in the middle of it all and changed doctors several times looking for any help/answer. To keep track of the history, medications, tests run/results, medical records, history of doctor contacts, etc., I created a three ring binder with all of it organized with tabs. Anything that happens goes in that binder and in case of a fire, etc., next to getting our kids and our laptop (with all our pictures on it) out, that binder is next on the list of high priority. It may seem a little retentive to create something like that, but when you’re dealing with something chronic, I’ve found at least, that doctors (the good ones) really appreciate the organization and up front/quick information.
I just picked up a book at the library called Broken at the Strong Places - it’s a book about living with a chronic illness written by Richard Cohen. He chronicles the lives of five people living with various illnesses, from terminal to simply life altering. I’m only at the introduction, but so far, I really am appreciating it and the perspective.
June 19th, 2008 at 9:59 pmThanks for visiting Laura. I’m sorry your daughter has been unwell. Your binder sounds like just what I need. I’ll check if our library has that book. It sounds like it could be very interesting.
June 19th, 2008 at 10:30 pmOrganization is the key. Not only have I been living with a chronic illness for thirty years but now I have three of my four animals seeing specialists for what will be long term treatment.
I’ve got schedules for my medication and the animals and I check it off every day once the medication is given. I feel like I’m running a nurses station, but it alleviates the anxiety of missing a dose and it protects me from wondering if I took, or gave, the medication.
It’s vital that every doctor know every other doctor you’re seeing and all the medications you’re taking. Most likely the only person who has a full picture of your meds is your pharmacist. Make friends with the pharmacist. Get to know them on a first name basis. Since they are the air traffic controller of your medication and their specialty is pharmaceutical interactions they will catch a potentially dangerous sooner than your doctor.
Find time in the day to quiet your mind. Create a health support team of neighbors (if appropriate), babysitters, etc. so that when things arise it’s one less hassle. It’s all about creating ease.
June 20th, 2008 at 3:21 amVery good advice Greg. I need to become more familiar with my pharmacist. I hope you and your pets are all doing well. Thanks for visiting.
June 20th, 2008 at 7:12 am