Tuesday, July 13, 2010

The beginning..

I wanted to start blogging about what's been going on with my health for two reasons:

1. It's a release for me to share how I'm feeling and what's going on with my health;
2. To help the one's close to me understand what is going on.

I'll start at the beginning.....always a good place to start!! The day after Thanksgiving 2008, I was sitting at work and had been feeling horrible pain in my chest. It felt like a bad case of bronchitis. After sitting there for several hours, I decided to go to the ER. After several hours and numerous tests, the doctor came in and said "we've opened a can of worms. I can't tell you anything except that we are admitting you." I said excuse me, you've got to tell me what is going on. She explained that from my x-rays, the lymph nodes in the center cavity of my chest were extremely enlarged. She said she'd never seen anything like it. So they admitted me.....that following Monday, I underwent a mediastinoscopy (a procedure where they cut a small incision at the base of your throat and go into the center cavity of your chest). They took samples of the lymph nodes there. After several weeks, they said they thought I had Sarcoidosis (an auto-immune disease which can affect several organs of the body). Two days before Christmas, I went back to the ER with the same pains. They decided to start me on the treatment for sarcoid....which is high doses of steriods. Last minute they see some abnormal test results which changed their minds. They decided to start treating me for histoplasmosis (a fungal disease which is contracted by contact with bird or bat poop)..... I underwent 6 months of treatment for that...with a very potent anti-fungal medicine that made me very sick. My chest pain basically went away.

Now fast-forward a year and a half later......about 3 months ago, I started feeling bad again. Let me try to describe how I "feel bad." Imagine your chest in a clasp that is so tight that you want to stop breathing so it won't hurt.....fatigue....can't sleep...moody...my whole body aches...I feel like I'm going to burn up from the inside out. Yeah that should about sum it up! Anyways, I finally convinced myself to go back to the doctor (it helped that they called to remind me of my 6 month follow-up!!). He decided that we needed to do a bronchoscopy (where they go in to your lungs with a microscope). After this procedure, he said he still wasn't sure what we were dealing with.

I started doing my own research. I knew he had "thought" it might be sarcoid, so I researched that. Then I knew he had treated me for histo, so I researched that. Then I cross-referenced them. I learned a lot about both diseases. One thing that I learned was that the symptoms for both are so much alike, they have to do the whole elimination process to find the sarcoid. I felt like I was alone in the world, dealing with this. No matter how I tried to explain how I felt to anyone, including my husband, I still felt alone. I started reading peoples blogs that have been diagnosed with sarcoid, and sat in amazement......I sat here one nite in tears thinking "these people are describing how I feel to a T." I found out I'm not alone.

Today, I went back to the doctor cause my pain has got worse. I can't sleep cause it hurts to lay down. My regular doctor was on vacation, so I saw his nurse practitioner. She asked me how I was feeling. I told her how I hurt, how I can't sleep, how I'm so miserable. She said she totally understood and that they honestly believe I have sarcoid, but still have to rule out the histo.

Let me explain then I'll get back to the rest of my doctor visit. As I mentioned before, the treatment for sarcoid is high doses of steroids. If you treat someone for sarcoid that has histo, you can literally kill them. So if there is any histo in my body, we have to treat that first.

Ok, back to my story.....so in the mean time, I asked what can she give me for the pain. The doctor gave me Darvocet before and it didn't do anything. She said she wasn't surprised. She said there is NOTHING...and I repeat..NOTHING they can give me for the pain. The pain is due to the swelling of the lymph nodes in my chest and until we can shrink them, I will have the pain. She said the only thing I can do is try putting heat on my chest and sleep sitting up. I have had to literally make myself pass out in exhaustion to get sleep. I asked her what I can do for the fatigue...if there's vitamins or herbs or anything natural I can do to help it. She shook her head and said no, it's all part of it. So we left the doctors office today with some clarification on what we are looking at. They are saying that if the cultures from my bronchoscopy come back negative, I am looking at having a repeat mediastinoscopy in the very near future.

So there it is in a nutshell. I hope that this is not taken as a cry for attention or a plea for pity. I want the ones I love to understand what I'm going through. I spend numerous hours in prayer over this situation. Every time I start hurting I tell the Lord I don't understand but I know He will get me through it. He will give me the strength.

1 comment:

  1. I'm so sorry you're dealing with this. I think it's a great thing to start a blog. I used to blog privately for my therapy sessions and it helps tremendously. Keep it up!