Friday, December 17, 2010

Thoughts About My Health Care in 2011

Having chronic illness changes a lot of things in my life.  For example, while other people are writing out wish lists for Santa this time of year, I am thinking about my health care and what I wish it would look like in 2011.

Ironically, Santa and my version of good health care have a lot in common: they both are great ideas that just don't exist!

To be honest, the feeling I associate most with my health care right now is disappointment.

I am disappointed that the repository of health care knowledge is so limited for my condition. I wish some really smart researcher(s) would hurry up and figured out what fibromyalgia is, how to test for it and how to treat it.

I am disappointed that the Hippocratic Oath isn't inspiring my providers to do more for me. Is it really so horrible to want my health care providers to make some kind of concerted effort to lessen my symptoms and make me feel more comfortable with the medications they do have?

I am disappointed by my health care providers' reactions towards me. Six years into this, I still feel like I have to justify why I haven't gotten better yet.

To be honest, in writing this, I realize that I've gotten to a point where I don't really expect to get much out of my health care visits anymore. In fact, during the past six years, my health care resolutions have moved me away from the medical model to the self-help model of health care:
  1. focusing on living with chronic illness instead of having my life revolve around medical appointments
  2. scaling back on the number of my medical appointments
  3. cutting out unhelpful members from my health care team
  4. conducting limited time trials of treatment modalities (like physical therapy, acupuncture, chiropractic, etc.) and stopping those that don't help
  5. limiting spending on out-of-pocket medical expenses
  6. using self-care and self-help techniques to manage the symptoms of my chronic illnesses instead of looking to health care providers to "fix" me
And yet I still wish I had the backing of a true health care team. You know, like the team Dr. House has assembled for his diagnostic medicine department at Princeton-Plainsboro Hospital. I'd love to have the attention of top medical minds, figuring out new and novel treatment approaches, initiating treatment trials and supporting me through it all...

Oops, I seem to have crossed over into fantasy land again.

For 2011, perhaps I will add these new resolutions to my existing health care strategies:
  1. Find healthy ways to deal with the stigma and lack of understanding about fibromyalgia I experience.
  2. Move beyond my disappointments over the current state of my health care.
  3. Continue to live my best life with chronic illness by trusting my body, respecting my limitations and working my self-management program.
  4. Consider interviewing for a replacement rheumatologist.

Have you given any thought to your health care resolutions for 2011? In an ideal world, what kind of health care would you be receiving? Have you given up on getting a lot from your medical providers too?

Leave a comment and share your thoughts on this important subject.

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Heather said...

I am pretty lucky, I have a good team. My arthritis doctor tries her best to help some of the symptoms, and so does the family doctor. I do wish it was better funded so they would find out more about it and find better medicine that doesn't have the crazy amount of side effects. I can't take any of the medicines because of the side effects.

I hope 2011 is better than 2010 for you.

Felicia Fibro said...

I agree, I don't go into a medical appointment expecting any amazing solutions to be brought forward anymore. I am optimistic that my doctors will make some new connection or have ideas for things for me to try, but I have come to realize that science just doesn't know a lot about what is going on in my body, YET. I too take more of a self-care approach than I did in the beginning.

Good luck in your process of finding a rheumatologist that is a better fit for you! Here is to a new year for improved health, for us all!

Anonymous said...

Your wish lists and commentary is very relevant and hits home on all points.

I'm lucky to have a primary care physican that "gets" chronic illness/chronic pain, and is willing to work with me. I saw a fibro-friendly rhuemy this fall (my dr. decided to treat my constellation of symptoms as fibro) and see him again in January. I've been mostly disappointed by specialists (including a GI who was supposed to be IBS-friendly I just very briefly saw recently), so I'm reserving my full opinion for the 2nd appointment (which is much further away from the 1st visit than the time frame he wanted to see me in).
And, while I'm lucky to still have health insurance, it eats up more of our income than rent, and my health insurance provider is the one, not the drs., who decides which medications I can take, in what dosages, how often, and if it will be generic or brand name. To alter this, I have to go through the appeal process and my dr. has to write a pleading letter. (Tried to get the GI specialist to write for me since she (like my pcp) wanted to up the dose of one of my medications. She pretended I hadn't asked.)
The rheumy wanted to know the members of my team, and I just kept saying my pcp. She is not your typical dr. but then, I'm not your typical patient, either.