I’d registered like 6 months ago and a little more than 3 months ago I got an email notifying me of a delay in authorizing accounts but that was it. I just so happened to logon and try logging on today to what looks to be the new forum and it worked!!! Finally a link to others…
Okay so hears me spill and it is going to be a rather big spill as I have lots to say.
I just came out of an episode of exactly 2 weeks (14 days) which is about my norm. They never are less than 2 weeks but sometimes last couple months.
Anyway I am 35 and will be 36 in a few months. My first episode was in 1994 when I was about 20 years old. I didn’t know what was truly wrong with me until I visited this website about 6 months ago. I explained things to doctors, friends, family, employers, and employees and people would either claim something was wrong with me psychologically, that I was a liar, a drama queen, and even possessed. I didn’t agree with any of it so I just lived with it in hopes that I would figure me out. Each time I have an episode it seems during that night that I finally am truly recovering is when I take time to get on the internet and surf. Well I founf you in one of those surfs…thankfully. I visit a rheumatologist for other reason but 6 months ago when I discovered what was wrong with me, I pointed it out to her. We would often talk of different diseases and ailments and find that the symptons would be similar in some way or another but with KLS it was as if I was standing in a mirror and telling someone what I saw verbatim. She being the lovely doctor she is began to research what she could about the disease and before I left her office she had spoken to a good friend of hers who know the disease quite well. So I visited her and now that we know what I have, I have to undergo a couple of very expensive sleep studies in order to confirm and treat. Guess what!!! I do not have insurance and am no insurable due to pre-existing conditions. Further because of my inconsistency with staying “afloat” my credit is shot so I cannot borrow. But the good news is I am going to save enough to eventually afford the tests. I have applied for grant through the Awake Foundation but cannot seem to get a response.
I have dealt with this for nearly 16 years and often wondered if I would ever get anyone to understand so it is nice to know there are many others. Considering my age and the longevity of my disease, I take me to be an exception to the norm.
KLS for me has been a ridiculous nuisance and has caused me so much trouble. I did not (until recently) have a support team or anyone to assist. In fact there are times in my life that I do not remember mothering my now 18 year old son. I have lost jobs, friends, and even missed very important court dates. I have missed bills and so many other responsibilities with nothing to reference. I could only say that I was sick or ill but I had nothing concrete to give. Can you imagine how ridiculos that must sound over and over again. KLS had made me seem to be the most irresponsible of people when I am just the opposite. When I read that the disease usually only lasts 12 or so years, I was quite optimistic that my last episode would be my last…and then I had another. Then, I thought maybe it is over…guess what. Yep! I had another.
So that is my story briefly. Over time I will let you guys know some of the funniest, scariest, and down right most unbelievable of my episodes. I have some doozies. Some I remember and some as I have been told but all very special.
Needless to say through it all I am blessed to have raised my son and maintain some mainstay in running my own business. I can never really work for anyone under the conditions that you just “disappear” and then “re-appear”.
