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?

Up At 2AM Again

I'm up watching the Grey's Anatomy I DVR'd. When you're seriously ill watching shows like Grey's Anatomy convinces you that your own illnesses aren't as real or scary. I'm also eating my second bowl of Lucky Charms - mainly because I ran out of Honey Nut Cheerios. I figure these things, short of my breaking down and making mac and cheese from scratch, are the closest I can get to serious comfort foods at this time of day. The pain is back like a runaway freight train. This time its in my left hip-the usual bone or joint pain. I've hauled out every legal painkiller I've got and that's saying something cause I've got alot. From oxycodone to neurontin to methadone to fentanyl . at one tine i figured out had the equivalent of $8,000 worth of pain killers. i knew where to go to sell them but with my luck i knew I'd get busted. Heavy duty painkillers for heavy duty pain. I've got so many diseases its a virtual card game to figure out which one is plaguing me at any given time. This makes it easy for the bad doctors to write me off and the good doctors to feel really bad about me.

Now don't get me wrong. I'm NOT into the self pity thing. Before I became a card carrying member of the disabled, chronically ill squad disabled people used to really annoy me. They were whiny and believed they had some God given right to be compensated for what they'd suffered. It was almost as bad as the expectations of black people and since I'm black you can imagine how well that went over during black history month discussions. Well that karma thing will get you every time. It sure got me. Over the course of 10 years I've gone from using a cane to a manual wheelchair, to a rolling walker to an electric scooter and a few things in- between In my lifetime I have gone from being a teenage welfare mother to being appointed Assistant Welfare Commissioner for my State. It's all been one hell of a journey.