Living with Sarcoidosis

I am a 33 year old black woman with 2 children. I am a wife, a full time employee, I own my own e-store, and I am a writer ready to release her first novel. I DO NOT HAVE THE TIME for this disease to be wiping me out the way that it is!

It was right around the beginning of November when I developed a really nasty cough. (Secretly I blamed a coworker of mine because she had a nasty cough and she is infamous for not covering her mouth!) But, well after her cough went away, mine still lingered. I coughed and hacked everywhere I went. Well into mid-December I was still coughing. I went to the doctor who (I tell you no lie) said here I am writing you out this prescription in case it is your childhood asthma coming back, this prescription in case it is pheumonia, this prescription is in case it is bronchitis. I took the medicine and guess what…STILL COUGHING! I joked with my colleague one day and said that after Christmas I was checking myself into the hospital and I was not coming out until they told me what was wrong with me.

Well, guess what? On Christmas Night, I was feeling terrible. I could not stop coughing for the like of me. When I went to bed, It felt as though I was drowning. I had horrible night sweats. I could not sleep. I went to the emergency room. They 1st put me on a nebulizer which made me cough so much worse. Then, they sent me in to get some chest x-rays. They came back and said that they did not like something they saw on the chest x-rays and they sent me to get a ctscan. They then came back and asked me if there was anyone that I would like to call because they could not send me home-that they had found masses on my right lung that they believe may be cancer!!! CANCER! I am a non-smoking 33 year old woman…what????

Anyway, that was on 12/26/08. A couple of days later, they did their first biopsy on me. They did the one where they stick the tube down your throat and get the specimen there. My throat was still killing me when they came back a day later to tell me they did not get enough of the specimen to make a judgement so they would have to do another but this time they would have to cut a little incision into my chest. (well, right below my neck). They got enough that time and came to the diagnosis that it was Sarcoidosis I was thrilled -as were the doctors, as was my family. I mean, after all, it’s not Cancer! But, no one at the hospital really explained to me what this Sarcoidosis was and why I should be so happy to have it. I had to do the research on my own because quite frankly I had never heard of it until I received the diagnosis.

All I know is that it is horrible! Yes, I am assuming it is much better than Cancer but it still sucks! I hurt all the time, I am tired all the time, I cry all the time, My body is weak, I fall sometimes because my legs give way, I get so dizzy sometimes that I fall if I can’t get to something to catch me, My head hurts, My memory sucks, I sweat buckets if I try to actually walk for longer than 10 minutes in a store or something, I wake up drenched from night sweats, my muscles and my joints cramp up constantly.

I was in the hospital from 12/26-1/11. A week later I tried to go back to work. I lasted a week before I fell at work. I have not been back to work since, although I am expected to go back on 2/21. I honestly do not know how I am going to do it. This disease is taking everything out of me that I have ever had in me. They originally started me off with 80mg of Prednisone a day. (80mg!) but they’ve since tapered me to 60 and at the end of this week it will be 40. All this week I have more tests!! I have an ecchocardiogram tomorrow, the next day I have another ctscan, the next day I have another pulmonary exam, then after that - another blood work. This disease just keeps getting better! Keep your head high Mataya! I’m right there with you!