Tonight I have been reading and researching about the disease sarcoidosis. I found a really cool discussion board and blog that people go on to talk about what is ailing them and to chat with others for advice. I have joined the website and am now a member. I think that it has alreaady started helping me with some of my ailments that I am having. I believe getting it off my chest with people that know a lot about the disease is really going to help me. Also they have made a discussion board on Oprah's website on how they are wanting her help in the awareness of the disease since it is so unheard of. Please if you have read my blog or are really just curious about the disease sarcoidosis join the message board on Oprah's website and post a comment. If enough people show an interest maybe someone will do something to help get some answers out there about sarcoidosis. Here is my first post on the website and on Oprah's discussion board.



I found out that I have sarcoidosis after having my second child. I was told that it was in my lungs and no where else. I was told this without other tests being done. I was told that with some steroids I should be fine. I had no insurance, no job and have been getting assistance from the government ever since my first child. I really wasn't scared at first because I had no idea what the disease consisted of. Then my mother started doing some research and that is when I got scared I thought to myself "Okay I will just do what my pulminologist says and I should be fine". I went every 3 months and had chest x-rays. I took my steroids and didn't gain a lot of weight thankfully. I had my cough syrup that helped with coughing and sleeping and just basically tried to keep my head held high, which is easier said than done! January, 2007- I lost my medical card and was no longer able to get any kind treatment. I had to abruptly come off of the anxiety medicine, depression medicine, steroids - everything. Wheew I was a total basket case from January until last week!
From January until last week I have experienced the following.
Heart -palpitations and what feels like weekening of my heart (slowing down)Anxiety attacks- feels like a heart attack- SCAREY (probably from stopping anxiety medicine so quick and not being weened off of them)Pain- under my ribs, my chest, my lower back, and my left armHeadaches- sometimes they will last up to two weeks (nothing makes them better)Insomnia- 3 hours of sleep a night tops!Cough- mostly at night time Depression- Arghhhhhhhhh !!!! the pain of not knowing what in the world to do about having a disease will drive you to the point of hating everyone and secluding yourself from having a normal life.Fatigue- I am so tired...... so, so, so tired!
Last week I had to make a trip to the hospital with severe chest pain it really wasn't severe, just more scary than anything. I had pain down my left arm and in the center of my chest that went down underneath my ribs and palpitations that lasted up to 2 minutes at a time. The whole episode lasted for about an hour before I got to the hospital. When I got to the hospital they hooked me up to an EKG and shewwww- no heart attack. I was still experiencing the palpitations and pain though so they decided to do testing. They did an x-ray the results showed alot of infection. The doctor couldn't tell which was sarcoid and which was infection. Dr. then decided to do CT scan to find out what was what. The ct scan was awful. I knew i had sarc. but I didn't know how bad. I was told it wasn't bad! that it would go away, well it didn't. It had gotten worse the doctor told me that my lymph nodes were swollen and that the sarc. and infection was pushing or pressing on my heart. I can't remember exactly because of pain medicine and anxiety med. they gave me. They did an ABG... they hurt! It came back with bad results they then decided to admit me and get me started on some antibiotics, pain med, anxiety med, steroids, and some nausea med. I was to have a heart monitor on the entire time I was there and to have a heart echo done. I found out while in the hospital that I am severely allergic to narcotics! I went nuts. I was psychotic. I mean I lost my mind. I was told I had to quit smoking -understandable and I am trying to quit. For some reason that is all I could think about while in the hospital that is all I wanted. I asked for a nicotine patch to help me through this. I finally got one 2 hours before they discharged me! They were giving me dilaudid for pain and atavan for anxiety-together! Which I never want to experience again as long as I live. I was disruptive. I was mean. I was dillusional. All of this took over what was most important to me - getting better and getting answers about my disease. I got the echo done, found out that I have a thyroid problem and talked to their lung specialist who told me to follow up with my pulmonologist. I still don't have the results to the echo and don't understand my problem about my thyroid. I will see my pulmonologist Monday, hopefully he has all my results and can get me through all of this the sane way. Also I wasn't told what my ABG read. I don't even know what they do read. I was told it was awful, so I was admitted maybe someone will comment here on my blog and help me out Does anyone think that sarc. can affect your thyroid gland? What exactly is an ABG test? Should I be tested for sarc. in my entire body?
My name is Amanda and I am so misunderstood.





http://stopsarcoidosis.clinicahealth.com/index.pl
http://www2.oprah.com/index.jhtml