Strange, strange, strange

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This whole mess, Lupus or whatever it is, just has to be the most confusing, confounding and downright troubling syndrom there is! First I'm diagnosed with it, now when the Plaquenil starts to work I'm told I don't have it. Oh, and let's not forget the diagnosis of Shrinking Lung Syndrom where the doctor flipped out when my rheum suddenly decided I didn't have Lupus. It was as if I conjured up this huge lie that encompassed the oxygen intake tests and everything. Oh come on!

So, enter my pcp, the voice of quiet reason. He listened to everything I had to say as well as my parents. I've decided that since I can't remember anything anymore, I'm bringing trusted friends or family to these sessions. I now have the name of a second rheum, just for a second opinion, I have one doctor handling my meds, and we're working to get all of my records in one location -- with my pcp where they should be to begin with. This is the most together I've felt in a very long time. Tgal is right, a label is nothing more than just that...a label. If I don't have Lupus let's all shout HURRAY! But now we need to figure out why my mile long list of symtoms and my inability to breath much of the day continues on. If I didn't have the antianxiety meds, I truly don't know what I'd do, except end up in the ER far too often for breathing treatments and adovan. Honestly, the Shrinking Lung Syndrom sounds "spot on" but if I don't get immediate treatment for the Lupus (if that's what this is), my lung capacity will continue to shrink and I will become terminal.

I imagine there are many of you out there that have already planned for the "what if I die young" scenario. That beautiful boy in my profile pic is my 16 year old mildly autistic son. Even he knows there's a chance I won't make it (just make it quick, I don't want to die a slow, breathless death!). I have life insurance and there's equity in the house to pay off any extra bills and leave him plenty. I realize how dramatic this seems, but guys, there's something wrong and I know it. I need this lung thing taken care of right away. The first time I went to the ER, I knew something was wrong. I wasn't being a drama queen and it took a lot of courage to risk hearing the infamous "sorry, can't find anything!" It turned out to be lung blood clots. The second time (two weeks later), my esphogus (sp?) was swollen from the predinsone...and so on and so on. My lung doctor's nurse is trying to get me in earlier so we can start working on this, Lupus or not. I have the Lupus symptom where there's so much pain in the bone across the sternum. Deep breaths are a both a punishment and a great relief.

Sorry to go on and on. I actually had a better day since my pcp put me back on the Plaqauenil. I just need a place where I can pour out all the fear and frustration of this situation. The other day I could barely breath and ended up standing by the carts and crying because I absolutely had to pick up some food but I couldn't breath and hadn't decided if I was doing the ER again (So my son would really need this food!). I cried, sucked it up, did about five minutes of shopping and made it home. Praise God, my son was so cooperative and I made it through the night without going to the hospital.

Let's hope tomorrow is a good day for all of us. I'll keep us assorted Lupus and other immune disorders in my prayers! Take care.
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  1. SandyR's Avatar
    my pulmonologist is also my harshest critic. I have Sarcoidosis. A condition he confirmed the diagnosis of and still he acts like I am making things up. I only have to see him a few times a year and when I do there is obvious disease action so I wish he would stop doubting his own diagnosis aloud and just move onto treating me for it already.