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| cartoon from http://quickdoctors.com/ |
Another health related posting. When folks get old and decrepit, they tend to dwell on their health to the boredom of everyone around them. So, in this post, I try to get past that and plan a future with MG, an incurable, somewhat debilitating condition, that however has the positive side of being treatable and not progressive if treated, but leaves one at a lower functioning level and the need to make changes.
Luckily, Margo seems destined to be cleared of her cancer and so her planning is short term--how do I get through a few more treatments, surgery and radiation and then get on with my life.
I have only been an Myasthenia Gravis (MG) diagnosed person since May 22, 2012. All of my info and experience is limited to the last 6 months. During that time, I have been quite active on a Myasthenia Gravis internet discussion group, http://www.dailystrength.org/c/Myasthenia-Gravis/support-group both in asking for and giving advice and watching as others here as they share their experiences with MG. As MG is a very rare disease, sharing MG experiences with others who are struggling through it is very helpful! We advise, sympathize, empathize, encourage, and learn from each other as well as share our experiences with the medical system where few medical folks actually have a clue about MG and what it entails for patients and often steer us in conflicting and counterproductive directions.
A common lamentation from MG'ers is the limitation in our physical activity, especially from folks who abruptly are struck and struggle with the sudden severe restrictions as they are first getting into balance with disease and meds and their side effects. The first few months are often the worst, with the first few years difficult and then things smoothing out some, yet hovering in the background to swoop in again and drop us in the emergency room in response to a common cold or flu getting out of control.
MG is a hard, miserable disease that changes our lives much too drastically. It plagues most of the physical things we try to do while tying us to doctors, clinics, and medications who have few tools other than adjustments in medications and treatments around the edges. It is depressing each day to have to limit what we do based on our muscles and breathing and such, with each day as likely to be good as it is to be quite bad.
So what can I do to adjust?
I am treating MG as a loss; one that takes me through the grieving stages. Stage one of grieving is denial. Then comes anger, bargaining, depression, acceptance according to the Kübler-Ross theory. I think this model fits my reactions to MG, although as a extremely rational person, I think I can understand things and react to them rationally better than emotionally. The one case where that hasn't worked is with prednisone and appetite ;-)
I skipped right to depression stage, after thoroughly researching MG and understanding right away that realistically, unless I had a rare remission or a wonderful response to medications, I would never function normally again, nor be free of medications with miserable side effects.
After a few months wallowing in depression, and decent improvement with meds, I am mostly in the stage of acceptance, determining what I can do with my next 20 years, hopeful that my current recovered ability to walk slowly for extended distances will not only continue, but improve.
I am so pleased that I can walk for 2 hours through the woods, albeit slowly with many Kodak moments, something I couldn't do at all in June and July.
My current enthusiasm is nature photography and my new toy a 26x zoom digital camera, bought especially to help me adapt to observations that are better made at a slower pace. Trying to enhance lower functionality rather than fighting it helps me adjust.
Being retired, financially secure, insured, having competent medical care, and family support also has allowed me to ignore most of the pressing issues that come with the disease for folks who are younger. That has let me concentrate on my own condition. Because my wife, undergoing chemo for breast cancer, is doing remarkably well, I am able to include her support quite well into my own functioning, with help from an adult son who lives at home and has been very supportive too. So the demands on me are really quite nominal.
So, I am busy thinking, planning and engaging in the next phase of my life that, although it will likely be limited in physical exertion of the type I used to enjoy (I was an avid backpacker, hiker, Scout leader, and did a lot of physical work -- built my own house, cut trees, sawed lumber, run a maple sugar bush, etc). Much I will continue at a lower level and more automations/tools, some I will give up (a wonderful excuse for dropping some things!) and I look forward to a whole new range of activities that I can do.
A posting like this is part of my depression therapy--I will emerge from the mire of MG with new enthusiasms to do new things where MG will not be a limitation! The first is a photo book collection of years of seasonal photos at the Wisconsin Lake. Maybe be ready for Christmas! Today I have talked myself into feeling good about the future.
Margo Update
Margo had a tired week after chemo round 2, but is otherwise doing fine. She has 3 more to go with the next one Tues and Wed Dec. 3 and 4. She is studying Christmas cookie recipes and gearing up for some serious cookie making in the coming days. I dread this as I am expected to taste everything and comment on whether they are any good or not (they are all great), but I am on a pre-diabetes diet due to the large prednisone doses I take to keep MG at bay, and I suffer greatly with the abundance of cookies I must mostly leave alone! Gonna hand them out early this year to the neighbors and family so they don't keep calling me from the pantry. I suppose it could be worse!
