These Genes

I wrote some time ago regarding my diagnosis of Systemic Lupus Erythematosus. I think I even explained that it is a disease of the immune system that causes my healthy tissue to be attacked and seen as a foreign or otherwise infected tissue that must be killed off.

It pretty much stinks that I have endured the pain for going on 8 years now and only got my diagnosis 2 short years ago when I went to a walk in clinic with symptoms, pain and a rash. I truly  had no clue what was wrong with me but I suspected when I discovered the rash on my cheeks and chest.

Many years ago my Doctors wife, Jackie, who was a PA suggested it as my problem and was told to research it. At that time I really didn't have all the symptoms and thought my issues were closer to that of Rheumatoid arthritis, which runs in my family that now includes my own mother who was diagnosed only a couple of months before me.

My father was diabetic as well. I never knew that was an autoimmune disorder as well. So imagine my surprise when I was informed that all of my problems were due to the genes my parents had passed along to me unbeknown to them.

I don't bear hard feelings for them, they simply did not know when they accidentally conceived my sister and I. I say accidentally because our mother always told us that we were the products of a missed pill and knew exactly when we were conceived and that it was certainly not on purpose. This information never really bothered me, things happen and she did have choices, she chose us in the end and that was all that ever really mattered to me.

My SLE has had me in its grasp for nearly a year now with little reprieve from the pain. My doctor has tried every combination of medication that is known to aid in the suppression of the disease to no avail. I take so many pills to keep myself functioning but I am noticing now that they are even beginning to fail me.

I can't seem to get on top of the pain lately and its causing many issues within my life. Depression is at the top of the list. I cry more now then I ever have in my entire life. I was always able to put myself and my emotions to the side and focus on being a mother to my children the best I could and to be a wife my husband could be proud of, lately I am ashamed and embarrassed by my illness thanks to some who would like me to think that I am faking or not really sick; I don't look sick after all.

The worst part for me is the hair loss that comes with this disease. It falls out in hand fulls! The second worst is the inability to walk most recently. I have been struggling with this now for nearly two months. Its hard to explain to others that while I may look well, my knees and hips hurt so badly that even to walk short distances just about brings me to tears.

I am embarrassed from the rash that makeup won't cover and the oral situation of the sores and enamel softening of my teeth. I can't stop it, I am not sure entirely if the medications are doing that to me or if its part of the disease process, there are plenty of ideas that support both lines of thinking.

The major component to causing my "flares" is stress. I can't control what others due to cause me stress, I do try to control my reactions to find that often it simply doesn't work. If I let it get to far out of hand I have seizures, of course the medication for that seems to be working and I have been seizure free for a few months now thankfully.

My family is often affected by my illness to the point of worry, hurt, concern, confusion and often they feel like I just let them down when I don't feel well. I can't blame them really, I feel the guilt of letting them down as well which compounds the stress. Its a vicious cycle.

Lately the "fog" has been heavy and the result of that is devastating. I used to remember EVERYTHING, now I am lucky to remember what I went to the kitchen for! I can't hardly hold a thought for more then 30 seconds and then its simply gone forever if I don't write it down, even then I sometimes can't even remember writing the note to myself!

Coming into this holiday season, the season of the flu, norovirus, etc. I ask that you remember that not everyone that looks healthy is, if you are sick please stay away from public places like the grocery store where you are likely to run into someone with a suppressed immune system and would be subject to catching whatever you are exposing them to and that it could result in a hospital stay for that person you infected, you are taking their life into your hands.

Right now a Lupus sister lies in an intensive care unit with complications from such a thing. I know the person who carried it to her has no idea what they did but now she is fighting for her life. Wash your hands, stay home if you are sick and please for the sake of those who have no other choices but to expose themselves to you, please think before you act when you are ill or have been exposed to illness and for goodness sake get a flu shot, since those of us that can't depend on you to not spread it around.