deannayh,Mar 8 2006, 10:32 PM
I was diagnosed in December of 1998 with
FIBRO-fibromyalgia syndrome (FMS)
And several smaller fun things that are just too long to post or even spell, lol
OK, that post was way too long.
This is the more personal version.
The more annoying of them all. The dominate one. The one that seems to dictate what I can and get to do on an hour by hour basis. The one my doctors have me running to the lab every week to check my stats. Currently my plateletts are back up! (If you are not familiar with these little wonders, they are the things that cause your blood to clot if you cut yourself-so you do not bleed to death. They are very important.
The thyroid is being attacked again, and the liver is being very closely watched.
This one drives my crazy. I have spent over $1000 trying different contact lenses before I found out I cannot wear them.
I need to drink liquids 24/7. All through the night I wake up to drink more water and pee, how lovely. It affects the digestive system in not so wonderful ways as well.
However, I do not sweat as much as most people and this is very nice as a girl!
Most people know what this is. It's painful and annoying. My mom and I try to go swimming twice a week whenever possible. It is the only thing I can do. Gotta keep moving!
I'm afraid if I stop, I will seize up completely and end up living like a 99 yr old at age 35. (I was diagnosed young)
Lots of talk about this on the board. You seem to relate and/or understand it for the most part.
Anyway. I started getting really sick in '96 and just got worse thru "97. I had a wonderful doctor who started in August-October of "97 to figure out what was wrong with me. It took over 14months. In December of 1998, I was sent to an autoimmune specialist. He figured out all of the above.
I am fortunate to have a very well known Dr. in this area and he is wonderful. God help me if he ever retires! (I tell him he's *NOT* allowed to retire until I'm cured, lol)
It has been very interesting to a very active, very outgoing, highly energetic 20 something, who believed her entire life that "I can do anything if I just work hard enough" (I might have been accused of being a Hufflepuff, but I'm too much a Gryffindor, with the mind of a Ravenclaw --sorry, Harry Potter reference)
Well, let me tell you, when your entire identity is wrapped up in being a hard worker, a creative worker and someone who is *ALL* about the details...it takes some getting used to the thought that I cannot just "work harder" to get there. I was so incredibly proud about being so independent. Wow, was that a lesson!
Thank God I have a wonderful supportive family and significant other. I would not have made it to where I am now if it weren’t for them. I used to be the rock that everyone could count one. I can't tell you how grateful I am that I now have "rocks" that I can count on. (I probably always did, but I never gave anyone a chance to prove it before, because I always had to “do it myself”.)
I have learned…
…that my days of snow skiing downhill on the double black diamonds and floating down a mountain in 5 feet of powder are over, but I can certainly meet people up at the lodge for a fabulous lunch and even better view.
…I cannot be the famous graphic designer living the ultimate and hippest loft in New York, but I can teach rubber stamping, book making, paper making, scrapbooking (and soon, hopefully digital scrapbooking) to anyone who wants to know.
…The spur of the moment, hop on the Goldwing and ride for days or even the weekend dirt bike riding trips with my honey and friends are out, but, I can enjoy new hobbies with my honey. He has found an interest in remote control airplanes/helicopters. That new helicopter actually looks like fun. We can do that together.
…Traveling around the world, climbing Mt Everest, Walking the tiny cobblestone streets of Toledo, Spain and biking thru Amsterdam are not in my future. (I always had to be physically active. I get bored easily and had to keep moving or I went crazy!)
I do have precious memories of Spain, Germany (twice)
, Austria, Czechoslovakia (now the Czech Republic and Slovakia)
, Mexico (twice)
and most of the USA due to a traveling fetish before I got sick. And I did get to climb Mt St. Helens at least. Mt Hood was next, but then I got sick.
I do have 3 traveling dreams left before I die:
1. Italy. All of it, but more time in Tuscany.
2. London, and other areas of England
3. New York City at Christmastime
I don’t like to do just the tourist stuff in a new country. I like to completely immerse myself in the culture and learn everything I can about the country, the lifestyle, the food, the locals hot spots, etc. So when I go, it’s never less than 2 weeks (and let me tell you, I’d rather be there 6 months or more)
The point is, you redefine yourself. You find new joys in life and keep moving, keep hoping, keep learning, keep trying…
You make a new life, Hope for a new future and Live like this very moment might be last good one you have for a long time, so enjoy it!
(sorry so long...I guess I got a roll, lol)