When I was going through breast cancer treatment, fellow survivors and even my doctors would talk about the "new normal". All those things you never thought you'd ever have to deal with (cancer, mastectomies, supplements, hormones, body and mind changes), that were suddenly part of your life, and would become "normal".
Sarcoidosis seems to have its own "new normal". Steroids for one. I hate taking them as much as I thought I would. They make me too wired to sleep and my eyes feel like they are far too open all the time (HOW in blazes to guys play baseball on these things?!!). The sleeping pills are worse. I get to sleep, but am wide awake at 3am and ready to start my day, knowing that I'm going to crash and burn at 3pm. All of the pills I have to take 3 times a day are just as bad, I hate chasing down breakfast with a pile of meds and a shot from an inhaler. But the asthma attacks, those are probably the scariest "new normal".
Yesterday I went to the dentist. It wasn't anything unusual, but I did have to ask them to stop cleaning every few minutes so I could cough. After though, I couldn't stop coughing, I couldn't breathe properly and felt like I was being shoved in the chest and drowning all at once. It wasn't even until later, after I'd gone home to lie down and rest after the dentist (?!), when I was trying to talk to my boss, that I realized what happened. He got very disconcerted by my struggling to hold a conversation and asked what was going on. I explained and he said, "oh yes, asthma attack". Who knew?!
Up until this point, nothing ever triggered a big attack. I've just had days where it is harder to breathe or easier to breathe, coughing jags or pressure. Not everything all at once.
Asthma is a common disease and I am just now understanding how scary it can be. I have friends with asthma, friends whose children are on nebulizers and treatments for asthma who worry constantly that their child will have an attack at school or in the park. I get why they worry now. Because it is definitely scary.
After yesterday's episode, I realized that this is my new, new normal. I battled the cancer and have won that battle so far. But the Sarcoid. This thing is going to be longer and tougher to beat, and the new normal is not going to go away anytime soon.
Peeves the cough was just the beginning.
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2 comments:
Hope the roids did the trick and you can get on the immuno-suppressants. Still not a great deal during cold and flu season!
Yogi sells a Detox tea. I'll get you a box next time I'm out.
You need some good news!
Hey Kathryn-
read your blog-while I was trying to get more info about sarcoid and breast cancer--(our shared diagnosis,sigh...) I discovered I had sarcoid after tests for staging showed enlarged nodes on my sternum-
(translation: they were trying to determine whether I had stage 4 breast cancer--scary stuff)
I dont have all your awful symptoms at present-but note that I have some shortness of breathe-especially when Im upset...(yoga buddhist meditation time). xrays show that the sarcoid is worse (following radiation, chemo, etc) and nobody seems to know why its worse or what I can do to make it better...Im largely asymptomatic and this point ( as defined by all of the horrors you are experiencing..so Im thanking my lucky stars...)
I know its tuff tuff tuff to work thru all of this..keep a smile on and perform with work and family like nothing is wrong. (I spend a fair amount of time convincing everyone around me that I am 100 percent thank you very much--stop the long faces--I aint circling the drain--and sometimes that ruse is simply exhausting.)
anyhow, I wish you well in the world...
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