About Me: Female, 36, yelm - WA, member since Nov 2007
Hi. I really don't know what I'll get out of this but here it goes. I was diagnosed with scleroderma 8 yrs. ago. Raynauds and vasculitis came along w/ this stupid disease. So far I've had 26 surgeries,chemo w/ other very harsh drugs for1 1/2 years,many hospital stays f...
[More]or infection after infection,blood transfusions,many many different drugs that are pure poison in your body,and so many scars to hide.I have 2 kids(8 and 13).I've lost 3 during my 2nd trimester.I did get the "chemo perm"!!!! I do love my hair now!! Anyway,my digestive organs are being eaten up by the scleroderma.I just got home from UW Med. Ctr. the day before turkey day!I'm on mainly liquids if I eat at all.Food-anything-is now like poison to my body.My fingers have lost all feeling in tips and ulcers so bad.I was the 1st "victim" to have a spinal cord stimulator put in for my hands and feet at Sweedish in Seattle.Almost lost it
due to infection but they saved it(and the device is actually implanted in my right butt cheek w/ the leads(2) going up through spinal col. to back of neck.I have a remote,too!Walmart turned me off once so we had to reboot my butt!! There is so much more to say.I'm really trying not to lose all my faith in the medical field.My kids and husband have suffered so much.I lost my family over this(they don't want to see me like this which is bull-crap!)I am dying.I can feel it,I can see it and the doctors say theres nothing more they can do for me.So, I am looking into stemcell treatment-the real stuff outside the country.Given the circumstances, what do you think?. Iam on lots of meds again-but no cytoxin,solumedral,methotrextate,IVIG, and all that other crap.I have found that THC makes all the difference in the world for me at this time.It allows me to not just give up.I can sleep(which is the most important one),eat some soups and liquids,i can tolerate the meds that i am on,My depression and panick attacks stopped,i can be involved somewhat w/ my family,and the real big one is that for some reason it warms me up for awhile at a time so i'm not so freezing cold all the time.But i need a Dr. who is licensed. The one thing that is natural compared to all these drugs is almost impossible to get and very frustrating.No, i'm not a stoner.I am a very lovely person but those who are very ill and terminal understand what i mean. On the bright side,i've been blessed w/ my husband and kids!!,and 2dogs/cats.
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wow! i read my last entry and its so hard to believe i was so sick at that time. My doctors at the UW had no clue so they sent me home then i was so much sicker and went t...[more]
Oh where to start. I feel like sh*t sooo bad. I'm dehydrated AGAIN and the pain...OMG. I have done too much crying the past few days. I told my GI off and going back t...[more]
I have been waiting for the snow forever now!!! I'm back home pumped back up and feeling pretty damn good! Me, Jeff and the kids (and 2 wiener dogs) went out and played i...[more]
