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Senior Member
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Join Date: Jul 2008
Location: San Antonio
Posts: 1,471
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Senior Member
Join Date: Jul 2008
Location: San Antonio
Posts: 1,471
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Wow! Did you have all the classic symptoms? By the time I was diagnosed, I was down to 100 lbs. cuz' I could no longer swallow and had trouble - ok I stopped - breathing......scary stuff. I was so sad to hear that your thymectomy didn't work - everything I read when I was first diagnosed made it seem so easy - you have the thymectomy and the *poof* go into remission, which obviously is not the case......I was diagnosed March 6, hospitalized March 15, and then had my thymectomy on April 22...needless to say, it was a very fast month and VERY SCARY
The needle phobia truly is my biggest issue. I know it's illogical, and that is why I get so embarrassed, but I'm going to get help for it. It just doesn't make any sense to be so afraid of a little needle or cath, especially when they are being used to save my life, though the Prednisone has made me a lot more emotional and quite frankly, crazy, plus this lack of control is really hard to take for someone like me to take (total type A, Monk type), but I need to learn to chill......You had 2.5 years of being symptom free? How glorious! How wonderful! I bet they were the best 2.5 years of your life - did you get sick or something? Or is that common? (A couple of years of remission, followed by being sick again?)))) I just was so sick by the time I was diagnosed that I was woefully unprepared and just blindly believed whatever the docs told me and was willing to do ANYTHING to get better and I am in the sense that I can eat, walk, talk, swallow, etc., ....I just miss the "old me", but I guess I'll have to get used to my life now and appreciate what I have NOW .......I was so happy to hear you were able to overcome your needle phobia - there is hope for me! I'll have to take a "big girl pill" and just do what I have to do to make it through........Thank you for answering my thread - it really helps to hear from others like you
Quote:
Originally Posted by MissyGirl
Hi,
Some facts about me: I'm 45, diagnosed 9 years ago, symptoms for 10. I had thymectomy in 2000. It didn't work, clearly. A little hint: They hardly EVER do!
I also have lots of hormonal/gynecological issues. Attempts at manipulating the hormone levels have ended in disaster every time.
How long ago were you diagnosed? If it's been less than 2 years or so, everything you are going through emotionally is "spot on." It takes some time to grieve the good life we've left behind and make peace (I still won't say accept) with the "new you." The new you may very well be chronic. However, you may be lucky as I was several years ago when I had 2.5 glorious years of being symptom free. Of course I've had 4 years of hell since, but I keep striving to achieve that perfect balance once again. It's tough because it isn't working!!!!!
The needle phobia really seems to be one of your biggest issues. I suggest you get some help for that, so you won't be living in fear so much all the time. I have a similar phobia but now, believe it or not, I access my own port at home and do my own IVIG! So, I am living proof that it can be overcome!
Hang in there....
Missy
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