Saturday, August 6, 2011

Breathing difficulties

   Today I am having a lot of trouble breathing. I'm exhausted, just from the effort that it's taking to breathe. So many people don't understand. But it's Pulmonary Sarcoidosis.
   I was diagnosed after my youngest child was born. Those of you who have been pregnant and have had kids, you remember how, at the end of your pregnancy, it can be hard to breathe because the baby is taking up so much room? After my son was born, that feeling didn't go away.  I would get out of breath walking up a flight of stairs, or sometimes even from talking too much! I wasn't too concerned about it.
   When I went to be prepped for having my tubes tied a few months later, a routine chest x-ray was done. While I was recovering from the surgery in the hospital, the Dr. came in and told me there was something unusual on my x-ray. At that time, I became intensely aware of every breath!  He had his nurse schedule an appointment for me with a pulmonologist. So I went to see him, and he told me I had Pulmonary Sarcoidosis. I had never even heard of it! He told me about the particular pattern he could see on the x-ray, it looked like a pawnbrokers symbol, three balls, one over two. He turned out to be a very new doctor, and he was all excited that I was his first Sarcoid patient. He sent me to see another specialist in the Westchester Medical Center. He wasn't so thrilled.
   He told me it would either get better, stay the same, or get worse. He began me on the regimen of drugs that, to this day, are basically the same. At first I had to carry them all with me everywhere I went, because I had to take the inhalers every 4 hours. Since that time, they have developed new longer-acting ones, so I only have to take them every 12 hours. Even one of the pills I had to take twice a day, now are only needed once a day. I have learned to take pills by the handful.
   People usually assume I have Asthma, because I wheeze a lot, and that's the best known lung disorder. I have gotten extremely weary of correcting them, so I usually just change the subject. And it turns out that all the drugs I take are primarily for Asthma! But they work pretty well for me, and I can usually function pretty normally. I just have trouble with stairs, I need to take them one at a time. And I do get out of breath from talking too much. Which will highly amuse my high school friends if any of them ever get to read this...
   I qualified for a Handicap parking permit, which I got since my Hubs encouraged me to. You should hear some of the comments I have gotten. "You can walk, why do you have a permit?" "You look fine, what's wrong with you?" It got to the point that when I got out of my vehicle, I would do so very slowly, and walk slowly, or even limp across the parking lot.
   This is where having Alopecia has  actually helped me! Since I lost my hair, not a single person has given me grief. I am assuming that they're assuming I have cancer... It does sometimes come in handy.  And I don't feel evil at all.
   Would you like to feel what it's like to breathe as I have to? All you have to do is take a straw, put it in your mouth, and breathe thru it. Don't cheat and breathe thru your nose for back-up. I will advise you to breathe very slowly, not normally, or you will quickly be yanking that straw out of your mouth!
   So this is how I live. And live I do! I do the best I can, but some days, like today, are harder than others. Some people have bad hair days? I have bad air days!
   I would love to hear how your straw experiments work out, leave me comments, please!
Thank you so much for listening!

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