Monday, January 24, 2011

When the Doctor Says It's Time to Stop Fighting My Illnesses

It's a tough question to ask ones self - a tough question to face.  Last week was hell. Mid-week I received 8 puncture bites from my dog. I came out of it black and blue and bruised half-way up my arm.  I should have realized it would effect my lupus but I honestly didn't think about it.  Over the next two days both hands swelled up and I was so tired I couldn't get out of bed.  I knew my dog had its rabies shots so I wasn't worried about that.  I was worried about the general dirtiness of a dogs mouth and the fact that I have very little left of an autoimmune system.  Then the forgetfulness kicked in and I began missing medications and insulin.  By Thursday night I couldn't get out of bed without help and my husband had to stay home from work to take care of me. My husband and I know the drill when it comes to lupus. We went back over the medications I missed, double checked my blood sugar listings and times I'd remembered to take my insulin. We caught everything up and by tonight (Saturday) I was able to get up and moving a bit. I finally kept a small amount of food inside.

Now what does this have to do with anything? Well this past August one of my way too many doctors said I was refusing to accept that my health was deteriorating and the many sicknesses were related to that deterioration. We had quite a fight actually and it later turned out I was yet again seriously ill but not due to deterioration. It was due to respiratory failure. Now I know the majority of my doctors have placed me on their "I can't fix her" list. If you've ever been on that list you know the one tell tale sign - the doctor says "I'll see you in six months." This basically translates to "I'll refill your scripts but I don't expect to see you again unless you're dying. Have a nice day." Apparently there are few things more frustrating to a doctor than a patient that just won't get well. Maybe it screws up their batting average or something.

Now on the one hand society tells us "Do not go gently into that good night. Rage, rage against the dying of the light" which I've been doing since the day I got my first diagnosis. But now that most of my doctors have placed me on their own personal "can't do nothin for her" list its become about my refusal to accept my own deterioration? Arghhh... How do you fight when your doctor doesn't think you should be fighting anymore? When is it time to give up?

3 comments:

  1. Well you can't give up yet... you still need to give me your ideas for the website. Have Jeanine or Patrick give you my email address. Mahalo!

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  2. If you ever get to a point at which it's time to give up, you'll know it. I did. Next time I flare badly, I won't fight. It will be a relief. I never felt that way before. So don't give up until you're ready. And get some new doctors. Jennifer Jaff

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  3. Susan I LOVE your blog. Its truelly inspirational and your writing is so heartfelt and skilled.I hope your alive and well and still fighting. I recently found out I might be dyeing of hiv. Its hard to cope with such a startling realization that a life you just put together is falling apart. That you are the face of an unspeakable statistic. However I find that those of us who are faced with our mortality become thee most humain. I hope we can be friends and be their for one another thanks!rational and your writing is so heartfelt and skilled.I hope your alive and well and still fighting. I recently found out I might be dyeing of hiv. Its hard to cope with such a startling realization that a life you just put together is falling apart. That you are the face of an unspeakable statistic. However I find that those of us who are faced with our mortality become thee most humain. I hope we can be friends and be their for one another thanks!

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