Let me beat you repeatedly with a ball peen hammer for a while...
now you have 1/2 an idea....
now you have 1/2 an idea....
I have a disease called Sarcoidosis. At this time there is no known cause or cure for the disease. Doctors can only treat the symptoms. It is thought to be an auto immune disease and is known that it can effect every organ in the body. It causes inflammation in organs. This inflammation causes granulomas. Granulomas are cluster of cells that form in tissue that has been inflamed. They are small 'sesame seed" sized and shaped particles that will clump together in the affected organ and can cause scar tissue and permanent damage if not treated. Although it has been found in almost every part of the human body, most patients get it in the lungs, lymph nodes and sometimes eyes and skin. Fortunately, in a majority of sarcoid patients, the symptoms are mild to moderate and the disease will (sometimes) go into permanent remission in 2-3 years from onset. Then there are the top 10-20% that have severe and chronic symptoms that will most likely need treatment for a lifetime. According to my pulmonologist, I am in that top group.
In 2001, it was found in my eyes and thoracic lymph nodes. Although difficult, I was able to continue working full time until Dec 2004. I then had to start working from home to allow long breaks from the computer to avoid eye strain. In 2005, I had to stop working and driving (hit a telephone pole that I literally did not see). in Feb 2006, I was officially announced 'legally blind' in both eyes, even though my vision was in that state for months before the official statement by the doctor.
In 2006 and 2007, I had 2 separate eye surgeries to remove cataracts, clean out the old viscous fluid, replace with new fluid, and sew in a steroid implant to the back of each eye that would slowly release steroids to the eye for 24 - 30 months. My left eye never regained usable sight. After my second eye surgery, my right eye can now see, but I now have permanent scarring that makes all of my vision wavy (like a fun house mirror but not so fun). My depth perception is off and I often stumble and sometimes fall if trying to walk unassisted. I rarely venture out of my apartment without the aid of my son or other family member for fear of falling. Reading even large print is often a chore and causes severe eye strain, dizziness and headaches. And yes, being on the computer is bad for my pain. I am on it a lot since it is my only social outlet, but I do need to take several long breaks from it using cold compresses over my eyes to help with eye strain.
I am also under doctors orders to stay out of the sun at all cost. With my disease, my body is unable to process vitamin D, especially the kind produced through sun exposure. My doctor has told me that exposure to the sun will make my disease worse and resistant to treatment. As I really hate the heat and being heavily clothed I many times do not obey this order. Then I wonder why I feel so lousy for hours or days after a small amount of sun exposure. ... DUH?
As of September 2007, the sarcoidosis has now been found in my lungs, liver, skin, spleen, thoratic and abdominal lymph nodes making it difficult to breath and causing a lot of pain.
The medications to treat my symptoms of sarcoidosis are Prednisone (a steroid) and Cytoxan (a chemotherapy drug). They are both used to suppress the immune system therefore suppressing the inflammation and subsequent granulomas formed in the organs. They also both come their own set of complications and side effects, but I am assured that the results of not taking them would be worse.
As bad as all of this may sound, I know that it is just different path I am on now. I have more time to raise my teenaged son and have met many new and wonderful people that I may have not crossed paths with had it not been for my disability. I still have many many blessings to count. For the opportunity to be closer to my family, I even count sarcoidosis as a blessing.
In 2006 and 2007, I had 2 separate eye surgeries to remove cataracts, clean out the old viscous fluid, replace with new fluid, and sew in a steroid implant to the back of each eye that would slowly release steroids to the eye for 24 - 30 months. My left eye never regained usable sight. After my second eye surgery, my right eye can now see, but I now have permanent scarring that makes all of my vision wavy (like a fun house mirror but not so fun). My depth perception is off and I often stumble and sometimes fall if trying to walk unassisted. I rarely venture out of my apartment without the aid of my son or other family member for fear of falling. Reading even large print is often a chore and causes severe eye strain, dizziness and headaches. And yes, being on the computer is bad for my pain. I am on it a lot since it is my only social outlet, but I do need to take several long breaks from it using cold compresses over my eyes to help with eye strain.
I am also under doctors orders to stay out of the sun at all cost. With my disease, my body is unable to process vitamin D, especially the kind produced through sun exposure. My doctor has told me that exposure to the sun will make my disease worse and resistant to treatment. As I really hate the heat and being heavily clothed I many times do not obey this order. Then I wonder why I feel so lousy for hours or days after a small amount of sun exposure. ... DUH?
As of September 2007, the sarcoidosis has now been found in my lungs, liver, skin, spleen, thoratic and abdominal lymph nodes making it difficult to breath and causing a lot of pain.
The medications to treat my symptoms of sarcoidosis are Prednisone (a steroid) and Cytoxan (a chemotherapy drug). They are both used to suppress the immune system therefore suppressing the inflammation and subsequent granulomas formed in the organs. They also both come their own set of complications and side effects, but I am assured that the results of not taking them would be worse.
As bad as all of this may sound, I know that it is just different path I am on now. I have more time to raise my teenaged son and have met many new and wonderful people that I may have not crossed paths with had it not been for my disability. I still have many many blessings to count. For the opportunity to be closer to my family, I even count sarcoidosis as a blessing.
Find out more about sarcoidosis by visiting http://www.stopsarcoidosis.org
Thank you for your time to read my story.
Jeri
Thank you for your time to read my story.
Jeri
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