Desertsand1967's interview
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How did all start?
I felt exhausted all the time, then bad pressure headaches, then skin sores from sun, then my hair came out in clumps, then I was short of breathe, which became pleurisy, then my hands and feet swell 4x their size, my fingers became useless, severe muscle weakness and pain all the time, trouble walking, memory issues, so much more. So manny Doctors, pass you on, took over a year to see a rheumotologist. Then they all tell me, " too bad we didnt catch it sooner"
Do you already have a diagnosis? How long did it take you to get it?
Yes, but was told it was everything from I am crazy to I need to get a hobby, I can't lift my arms from muscle damage, when the results cam back they said , " well, look there, guess you were right" My quality of life is 10%
For what medical specialties have you been treated? What has been the most useful specialty for your?
I have been treated during the last 5 years by the following My primary --Cardiologist--Pulmunologist then Neurologist. Then the physiologist who sent me to the rheumolologist which i wait from feb.2018 to july 24, 2019 to see. He took 16 vials of blood, I waited for a call, I called yesterday!!!!! He took my call, yes you are positve for mixed connective tissue disease. Thats it!!!
What has been the most useful thing for you so far?
I am researching ways to treat it. Medicine is big business and i dont want to be part of it anymore. I have simplified my life...only a few people, no more stress, moved away, my music, meditation not medication!!!!
What have been your biggest difficulties?
The pain and flare ups.
How has your social and family environment reacted? Have your social or family relationships changed?
My family left me, everyone of them, they called me names said i was pretending, i lost my husband to another "healthy" younger female I live one day at a time
What things have you stopped doing?
Smiling, laughing, going out, climbing stairs, driving
What do you think about the future?
What future?
So far, which years have been the best years in your life? What have you done during them?
No answer for that one
What would you like to do if you didn’t have your condition?
Have my life back
If you had to describe your life in a sentence, what would it be?
Sucks to be me!!!
Finally, what advice would you give to a person in a similar situation?
I have none
