| How Sarcoidosis Has Affected Me |
| I have been having problems with my health for almost 20 years. I first had unexplained knee and elbow pain in 1982. I have had problems off and on with walking (stumbling and falls) and balance, and problems with tremors and muscle weakness over the years. I had been worked up for Multiple Sclerosis, and under the care of neurologists and rheumatologists, all of whom could not diagnose me, some of whom labeled me as hysterical and hypochondriac, saying it was all in my head. I was even called cancerphobic by a primary physician, after presenting with my parotid glands swollen so huge I looked like a chipmunk. I had "pneumonia" in Jan. 96, but unfortunately the chest xrays never resolved, and I was never informed. I could no longer work as a visiting nurse because I couldnt breathe and I had no energy. In June 1996, I underwent a bronchoscopy and mediastinoscopy with biopsies, which confirmed my sarcoidosis. Since that time, physically, and medically, many things have happened. I have pain. I run out of breath. I run out of energy. Frequently, I feel like a prisoner in this old body, and feel completely out of control with it, as if there is nothing that I can do to make things better. But there is much that I can do! Over the past seven years, I have learned a few things that have made it easier to deal with my body. The goal after all, is to have a life! Not just to survive! The biggest thing I have realized is that we all have good and bad days, I dont care if you are in good health or bad. Ask anyone, ask yourself, and you will see, I do not have exclusive rights to bad days! This perspective may seem strange, but it gives me a different framework to deal with life from, and makes me realize that this life holds many surprises for all of us. Everyone has a right to their own pain, and their own happiness. : ) ~~Including me~~ |
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| The Snowflake has been chosen to symbolize sarcoidosis, because of the many different ways that people can be affected by sarcoid. Just as no two snowflakes are the same, no two people with sarcoidosis will experience the same symptoms. |
| I dont really care to focus here on my symptoms. Instead I will include some links that I have found helpful in learning about how to deal with the various aspects of my illnesses. If you find you have any questions, would like further information, or just want to talk with someone, just email me, I will be happy to help. |
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| FATIGUE I have fatigue. I don't just mean that I'm tired. What it feels like sometimes is that someone just reaches in and turns the energy button off. My entire body feels lifeless, and it hard to move, hard to think, and an effort to breathe. One of the most important things I have learned is to pace myself, to not commit myself to things that I know will drain my energy, and to stop before I feel the fatigue. I schedule rest periods. I have learned to say no. The following link is about the fatigue from cancer, but has been helpful to me, even though I do not have cancer: Tips on Managing Fatigue |
| About Social Security Disability Applying for disability was one of the most degrading experiences of my life. The process can be long and drawn out. When you are ill, it is the last thing that you want to be doing, especially when you have to focus on all of the negatives of what you are going through. I almost gave up. I had been denied several times. I was at the point in the process where I had to appeal and then appear before a judge. Up to that point, I had done everything on my own. When I decided I couldn't do it any longer, I got a lawyer. It was one of the best things that I did for myself. He was good. BUT there were a few things that I had been doing that helped the whole process. One was to keep records of every doctor appointment, every change in medication, every incident that told me that things with my body were getting worse. I did this on 3 x 5 cards. You can also keep a diary of symptoms or activities, etc. In any case, if you have not applied for disability yet, the following link is for the Social Security online website, where you will find some information. Did you know that you can request telephone interviews if getting out of the house or sitting in the waiting room (sometimes for hours!) will cause you distress? |
| attitude is the real disability... |
| ARE YOU FROM WILMINGTON, MASSACHUSETTS? I grew up in Wilmington, and have four sisters. All of us have or have had a major illness, mostly immune system related. I have sarcoidosis, one sister has lupus, another with Multiple Sclerosis, another with Rheumatoid Arthritis. Everyone that has lived there has had major illness including kidney cancer, prostate cancer... We have had our suspicions regarding environmental issues there, but this is difficult to prove. My main concern is to make others aware, and maybe by putting this out there, it might strike a chord with someone going through similar things. If you are from there and have or know someone who has a major illness, I would appreciate talking with you. OR if I can help you in anyway, please feel free to email me. There are lots of things going on in Woburn, MA, the neighboring town to the south. Below are some environmental links that might be of interest to you no matter where you live in the United States. |
| No one can fully understand how I feel. I appreciate those who try... and for those who have their preconceived ideas and opinions and DON'T try to understand, I just think that you must have something in you that prevents you from being a fully functional and caring adult. Don't be surprised if I don't try to understand you either. We all have our limited amounts of energy and time, and all of us have to make our priorities. That does not mean that I discount everything about you. I just choose to take what I need and leave the rest. |
| I am not my disease. It has helped me to have a name for my disease, but I also have a host of other things going on for which I don't yet have a name. They have not yet specifically been diagnosed. I still have to deal with them. But I am not my illness. I am not my deficits. In fact,I do not identify myself by any one single thing. Putting all my eggs in one basket doesn't work for me. SO, I am a wife, lover, mother, sister, daughter, step-mom, auntie. I have many labels. My most valued roles are those involved with my family. I obviously work it out. My disability does not define how well I perform in these roles. |
| living is my life's work. |
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| Welcome |