Friday, November 06, 2015

If It Ain't Baroque Don't Fix It

Last month has been tough, and not just because I'm having a serious dose of missing the beach. Mostly it has to do with the ongoing mess that is my health. I've been having more and more asthma attacks, the meds that used to help aren't helping and the new meds are merely giving me more problems.

One of the biggest problems I've had is that after my pulmo went nuts and left or whatever happened to him (he's in another town as a hospital pulmo only) is finding another pulmo I like. I tried the one in the next town over and after less than a year we ended up at loggerheads. She made the mistake of trying to tell me I had no right to be frustrated and upset. No one tells me my feelings are invalid. Ever. I stopped that when I left my old church.

She also said she refused to continue me on the only treatment that gave me much relief, twice a month injections of the DNA recombiant drug Xolair. Right now I have ten thousand dollars worth of Xolair still sitting in my fridge, good for another year. I'm saving it in case I need it. She also wanted me to have a procedure that basically sears your airways open. Hopkins said I wasn't a good candidate for it.

The one good thing she did do for me was to get me over to Johns Hopkins to be seen and put into one of their research projects for the immunio problems I have. They have helped some, but not much with the asthma. The physical therapy I got to learn to keep breathing through my vocal cords trying to close during an asthma attack has turned out to be the best thing ever. I can keep my airways open during an attack.

My new doctor is a young woman, recently finishing up her residency and board certifications at our local teaching hospital. I like her, I like that she's like my first doctor in the way that she's open to trying new things. Started seeing her a four months ago. Now she's changing all my meds around.

Thankfully there are a few new ones I haven't tried. First one I told her I was unlikely to be able to tolerate because it is in an inhaler. Told her I am allergic, react every time to the propellant in an inhaler just like I do to aerosols being used around me. Still tried it. Made my asthma worst.

Being that it was an inhaled steroid I ended up with my low grade lingering sinus infection going berzerkers. I'm getting ready to go back in tomorrow morning and get my regular doctor to give me a different antibiotic as the one they put me on to kill the raging sinus infection from the steroid isn't doing diddily, and I'm having a hard time sitting or standing without falling down because my balance is completely screwed up.

I've been mostly in the bed these weeks, only leaving to do things like go to class or I went one Sunday to get a pedicure, went to brunch and got waxed and styled at the salon with my youngest. I'm sick and tired of being sick... the only good that has come of it is that I was completely relaxed by the piles of meds I'm on at my Spanish test and passed with a high grade instead of being tense and forgetting everything I learned like last test.

Jim's frustrated with me because I've done very little, but he's never really gotten how sick I am. He only 'gets' it when something happens like it did in Florida and I just about go into respiratory arrest. On the way to class yesterday I started having an attack in the car because of the chemicals from the roadwork we passed. Once at school I sat in the student lounge huffing on my nebulizer for about forty minutes until the attack eased. I joined the last half of class. My illness just fucking screws with everything. I'm sick of it. Back frustrated again.

Tomorrow is another trip to another doctor for another fucking prescription of pills. Bah. Feel ready to chuck it all in as living like I have for the last ten years is physically miserable. Limited and limiting.

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