Monday, November 10, 2008

Todays Doctor visit

Todays visit went pretty well. There isn't too much change in my overall condition, but my psoriasis is a little better on my arms. I always have a monthly checkup as long as I am on strong pain meds, because Morphine is a controlled substance that cannot be refilled over the phone. But I got a new prescription for a drug called Neoral, which is a form of another medicine called ciclosporin that I am not familiar with.. so more about that later. Basically it is a type of systemic drug treatment that is meant to reduce my symptoms. There is no cure for Psoriasis or Psoriatic Arthritis for that matter. So, that is kind of my hope in doing this blog that hopefully I can make a small difference in getting out awareness of my disease. I am so frustrated with how little knowledge there is out there. I read something online that someone wrote and I don't think that I have heard it said better. There is such a stigma among people who do know about psoriasis/ psoriatic arthritis that because of the way it looks people think it is some horrible contagious disease. But this person wrote that when you have psoriasis people treat you not like you have a disease but that you are a disease. It is an awful feeling to feel. And you know the sad thing is it isn't just strangers who make you feel like that. It can be people you know, people you love even. And it isn't necessarily that they mean to make you feel that way. Some people are just ignorant to the fact that psoriasis is not contagious and that it is not something that means you are a dirty person. They are ignorant to the fact that most people are really self conscious about having psoriasis. It is really hard to handle at times. But it is up to those of us who suffer from this disease to educate people. Because obviously our tax dollars aren't doing it. The truth is that this disease affects between 6 - 7.5 million Americans. It is a chronic disease that can be debilitating. Not to mention the emotional and psychological toll it takes on people. Psoriasis affects a patients quality of life, their relationships, everything. I can HONESTLY say without a doubt that every area of my life has been affected by this disease in one way or another. my husband and I aren't intimate as much as either one of us would like because of how bad I feel physically, and because I have a lot of issues with my body image. it is definitely hard. And then there are the issues with me feeling inadequate because I am not doing near as much as I want to do to help out, and he gets very frustrated with me as well. I know that ultimately he knows that it isn't my fault, but a person can only take so much. And he is really good to me. He always takes me to my doctors appointments. He makes sure we have what we need by providing for us, and he will never be able to know how much I love him and how much his support, love, and companionship means to me. We really do have a special, unique relationship. We can make each other laugh even in the most difficult and stressful times. And that is one of my favorite things about "US". He knows when I am truly having one of those days, where enough is enough, and it has all just gotten to be too much. And I have those days more and more the longer I live with this disease, and the more the disease progresses. I just realized it is weird. Usually when you think of progress you think of something getting better, or growing in a positive way. But when you are talking in terms of a medical condition progressing usually means getting worse. It means to me that the disease is advancing, growing in terms of severity. Just a thought. But back to My Husband, he knows when I am having one of those days. Usually no matter how bad I feel, I try to be happy, friendly and make the best of my day. I love together time with the family. but when I am having a really bad day, I usually cry a lot, i can't get around easily, I don't eat or drink much. And occasionally I can be irritable. But that is rare. I am usually a pretty calm, laid back, person who is friendly no matter how bad I feel. But there are days where I feel so bad that everything can really get under my skin. One thing that I am surprised I haven't mentioned yet; that is a big thing with psoriasis sufferers is...THE ITCHING. Psoriasis can drive you crazy with itching. And sometimes NOTHING will ease it. It is impossible not to scratch. I have scratched until I bled before. And when your skin is so thick and dry that it gets huge deep cracks, scratching the itchy areas can be very painful. And scratching in public is so humiliating.Because a lot of times when you have to scratch it isn't just a little itch. It is something that can go on for hours or all day. Benadryl used to work for me but not anymore, I've had to use it too much. So that is another issue. Well, I am getting tired (yet another one of the joys of psoriatic arthritis) so I am going to take a rest. Until Tomorrow! God Bless, Peace and Love- Tress

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