About 10 years ago I was diagnosed with lupus and another immune disorder that I don't talk about much because it is rare and misunderstood and fibromyalgia.
That was after six years and three rheumatologists. The fourth one was a charm. The others were actually quite cruel and judgmental and there was many a time that I ended up crying in the doctors office.
Many times I was told it was all in my head. It was the depression and ptsd that I have dealt with since I was a child. Getting that diagnosis was a double edge sword.
On one spectrum it was an affirmation that I wasn't just depressed there was something physically wrong with me. It is extremely hard to diagnose lupus because it mimics so many immune disorders. You get a blood test and if that is positive they give you another test to confirm that first test and then if that second test is positive they give you a third test to confirm that second test.
So bottom line I have it, and according to my doctor I am lucky because of my race/ethnicity so it won't be as severe. But with all three disorders there is no cure only management.
Then of course no one can actively see the depression and ptsd.
Now throw the problems with organs because that's what lupus does it attacks your body basically.
Now problems with osteoporosis because of repeated use of steroids to help control the immune disorders. And of course I am supposed to limit steroids now because of that. How am I supposed to manage the constant pain and exhaustion?
This year alone I have had approximately 55 doctors visits and that doesn't even count the eye doctor and dentist.
The year isn't over the endocrinologist wants me to get a yearly calcium infusion but they need to talk to my dentist first which is going to be a problem because I have had repeated infection so I might not be able to get the infusion because jaw infections can be a side effect. The only other option is to give myself shots and I can tell you right now that won't happen.
I probably need to make another appointment with my doctor because my pain levels have been off the charts. I know logically I need something better to manage the pain than what I have right now.
I am just really tired of going to appointments having to take time off work.
The invisible diseases that no one can see so I must be all right...right?
That was after six years and three rheumatologists. The fourth one was a charm. The others were actually quite cruel and judgmental and there was many a time that I ended up crying in the doctors office.
Many times I was told it was all in my head. It was the depression and ptsd that I have dealt with since I was a child. Getting that diagnosis was a double edge sword.
On one spectrum it was an affirmation that I wasn't just depressed there was something physically wrong with me. It is extremely hard to diagnose lupus because it mimics so many immune disorders. You get a blood test and if that is positive they give you another test to confirm that first test and then if that second test is positive they give you a third test to confirm that second test.
So bottom line I have it, and according to my doctor I am lucky because of my race/ethnicity so it won't be as severe. But with all three disorders there is no cure only management.
Then of course no one can actively see the depression and ptsd.
Now throw the problems with organs because that's what lupus does it attacks your body basically.
Now problems with osteoporosis because of repeated use of steroids to help control the immune disorders. And of course I am supposed to limit steroids now because of that. How am I supposed to manage the constant pain and exhaustion?
This year alone I have had approximately 55 doctors visits and that doesn't even count the eye doctor and dentist.
The year isn't over the endocrinologist wants me to get a yearly calcium infusion but they need to talk to my dentist first which is going to be a problem because I have had repeated infection so I might not be able to get the infusion because jaw infections can be a side effect. The only other option is to give myself shots and I can tell you right now that won't happen.
I probably need to make another appointment with my doctor because my pain levels have been off the charts. I know logically I need something better to manage the pain than what I have right now.
I am just really tired of going to appointments having to take time off work.
The invisible diseases that no one can see so I must be all right...right?
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