I seem to be so busy lately, but I can't seem to figure out exactly what I am so busy with! Anyway, this past week has been a bit hard for me, as I have been having some problems with a really strange thing happening to me! Every time I go outside, I end up with my face burning, and sometimes I end up with a severe rash on my legs and hands as well! The sad thing is, it can happen after being outside for even a couple of minutes! I did go to the doctor, but it has so far been the same thing as usual for me - they think it is nothing to worry about. Easy for them to say! They can go outside and play with their kids, or go downtown without worrying about having a full blown allergic reaction! And, of course, it is finally really nice weather here, and my girls would love to go out and build a snowman, but I can't.
All my life I have had strange problems that never seem to be any concern to the doctors. I made my first trip to emergency when I was 16 with really bad stomach pains - they told me it was indigestion! I still remember how embarassed I was because I had made my mom take me in. And, I have had to go back 3 or 4 times since then for the same thing, and I usually wait until the pain is completely unbearable before I go. Most times I just stay home and wait for the pain to pass because I am too embarassed to go in. But, I have also had problems with other things over the years, and I am always told it is nothing to worry about.
I guess I have started to feel alot of discouragement and resentment even towards the doctors. I just wish they would take me seriously sometimes. I am not the kind of person who would just be doing this and complaining just for attention! If they sat down and really took a good look at my files, I think they might be able to put some of it together, but they never seem to be bothered. I have come home so many times feeling like such a nut case! I try not to complain too much to my friends and family, because I don't want them thinking I am just making things out to be worse than they are, so I have spent alot of time worrying on my own about what is wrong with me. And, I think I might have reached a breaking point the other day when my doctor told me so far my bloodwork is completely normal. Not that I want to be sick, but I want something to be figured out so I can know what is wrong! And, I would like to be able to see the looks in their eyes when they finally see that all of these years, I have been telling the truth! It's hard to explain, but Friday when I left the doctors office, I came home and just cried. I cried all day, because I feel so frustrated with all of it! And, going outside and having my face feel like it is on fire just reminds me over and over that something is wrong, but nobody seems to know what.
One thing they are testing me for is Systemic Lupus, as one of the symtoms is a "butterfly" rash on the face, and severe sun sensitivity. But, I don't know if I will ever get a diagnosis for that, as I have done some researching on my own, and apparently it is very hard to make a diagnosis, even with the bloodwork. But, I have spent alot of time this past week talking to some women who suffer from Lupus on forums, and I have learned so much. There is so much ignorance still about this condition, and it is very sad. Alot of people suffer from it, more than MS, Cystic Fibrosis and other conditions combined, but there is still not as much research or understanding of the disease itself. Then, you get people like Dr. Phil who the other day on his show, made a comment about Lupus not being life threatening and can be controlled with medication. That is a complete load of BS, and as a "doctor", he should know better! People DO die from complications from lupus, and many are on medication, but still suffering. So, I have to say that even if I am not diagnosed with this condition, everyone who is suffering from it has my utmost respect and understanding. Many have suffered for years, before getting a diagnosis, and still haven't got the understanding from those around them. Many people still think it isn't serious, because the person often doesn't look sick, so it must be all in their heads.
Either way things go for me this week, I think I have a long road ahead: either getting a proper dignosis, (that's if they even think it is worth continuing to look into!) or having understanding from others. It scares me to think I might have something like this, and it is on my mind all of the time, but it scares me more to think I have something wrong that I will never figure out. I want to know, not only for my own peace of mind, but I need to know if it is something I could have passed on to my girls.
I am sorry for the rant today, but this has been a bit of a bad week for me, and I am feeling a bit frustrated. Hopefully, I might be able to at least make people more aware of this condition, and ask you all to be understanding. Chances are pretty good all of you know at least one person with Lupus, whether they know it or not, or even whether they have told you.
