SARCOIDS

I am so sick and tired of being sick and tired!!!

I found out that I have a disease in my lungs. I had my son on January 15, 2006 the whole time I was pregnant I was one sick puppy. Anything that you could imagine - I had wrong with me. Everything from having problems with my heart to having psychological problems. After I had my son it seemed like everything just stopped and I was better. Then I got this horrible dry cough that lasted longer than 2 months. I had a medical card at the time and had to go to the Dr. that they chose, so I went to him and I thought to my self "boy is this man a quack or what??" He sent me for testing that I had never even heard of before. He put me on inhalers and cough syrup and allergy medicine and none of it worked, so he referred me to a lung specialist. I went to the specialist and he sent me for an x-ray and a ct scan of my lungs and found some type of scarring on my lungs and decided to do a biopsy, "which wasn't fun!" He later called me into his office and told me I had sarcoidosis.

Sarcoidosis
Sarcoidosis is an inflammatory disease. It starts as tiny, grain-like lumps called granulomas, which most often appear in your lungs or lymph nodes. They can clump together and form larger lumps that attack other organs. Sarcoidosis often affects your skin, eyes or liver.
Sarcoidosis may be mild, or it can be severe and do lasting damage. It does not always cause symptoms, so you can have it without knowing it. Symptoms vary, depending on which organs are affected.
No one is sure what causes sarcoidosis. It affects men and women of all ages and races worldwide. However, it occurs mostly in people ages 20 to 40, African Americans, especially women, and people of Asian, German, Irish, Puerto Rican and Scandinavian origin.

I couldn't believe it, I was shocked and very very scared. My immediate thought was that I was gonna die. The doctor assured me that if I took the medicine correctly I would be fine. Yuck, steroids, cough syrup, inhaler, breathing machine, pain medicine because of the pain in my rib cage from coughing, anti-anxiety medicine, and anti depressants. I was a walking pharmacy. All of this medicine was really expensive! Thank god I had a medical card, because we wouldn't be able to afford them. So I took my medicine faithfully and went every 3 months and had x-rays then my medical card expired and now I can't get another one because I am married. So I haven't taken my medicine for probably 6 months or longer. I am really just now starting to feel the difference. Me and my husband have been job hunting and don't have a vehicle so we have been walking everywhere looking for jobs. The other day we walked to a staffing agency 2 blocks away and across a highway. I couldn't breathe and I almost passed out, I think that was really when my husband realized that I was sick. He then tells me that I need to file for disability or work from home, that if I did get a job I wouldn't be able to work long that I couldn't even walk across the road.

I am really depressed about this and don't really know all there is about the disease. I have done search after search on the Internet and just find the same stuff.

General symptoms caused by the disease include fever, tiredness or fatigue, weight loss, night sweats and an overall feeling of ill health. Other symptoms typically depend on which organs the disease affects.

Lungs: The lungs are the most commonly affected organ in sarcoidosis. Ninety percent or more of people with sarcoidosis have lung involvement, whether they have symptoms or not. Common lung symptoms are dry coughing, trouble breathing, wheezing, or pain with breathing, chest pain, tightness, or discomfort and coughing up blood, which is rare, especially in the early stages of sarcoidosis.

I kept quiet to everyone about how I felt I don't want anyone to think that I am milking my disease and trying to get sympathy. I no longer can hold it back I am sick, I know I am sick and I am sick and tired of being sick and tired!!!

My mom told me about a job where you can work from home and stuff envelopes and mail them out. I thought about trying something like that for a little while it would be extra money and we wouldn't have to come up with a way to pay a babysitter. I am also going to try and file for disability, the way I feel right now I don't think I could do anything, watching the kids and keeping up with them is even hard on me.