When I started this blog back in high school I was a teenager with chronic pain that I wanted a diagnosis for. I want someone to know what was happening to my body so we could fix it. I did not realize the journey I had in front of me and did not understand that not everything could be fixed. I spent a lot of time going from one doctor to the next though and it started to consume my life.
At some point it clicked in my head I was not actually helping myself by being so focused on answers, especially as more issues developed. I finally shift my focus to making the most out of life while living with my symptoms, I started to look at treatments from a quality of life perspective with the realization that my quality of life was more important than pin pointing exactly what was causing my body to fail so spectacularly. For a few years that has been my focus. I have actually had a few doctors comment on how impressed they are by the fact I am not super focused on answers, although I have always found that an odd complement. Yes it would be nice to have something simple to say when people ask what is wrong with me but it is not the be all end all. Of course you always find the answer after you stop looking.
A few months ago my pediatric rheumatologist thought it might finally be a good time to transition me to an adult rheumatologist. I was stable from her perspective and about as stable as we would probably get for a while in terms of my overall health and she wanted to see what they would say about my case. She referred me to a young adult rheumatology specialist.
I was a little apprehensive going into this appointment since I have had such bad luck with adult specialist so far. Both my peds rheum and PCP said how great this guy is and I trust their judgement but instead of taking as a comfort I took it to mean if I don't like this guy there is no one I will like. Thankfully I was very impressed. He went through all my past medical records with me to make sure everything was right. He told me everything he was doing and why. When he went on the computer he showed me the screen to see what he was doing. After examining my cuticles for autoimmune damage he not only showed me pictures of what the capillaries were supposed to look like and what mine looked like but he handed me the microscope he was using so I could look at my capillaries myself. He spent 1.5+ hours with me. By the end of the appointment I had the UCTD diagnosis I talked about in another post.
I also mentioned one of the test he ordered, a lip biopsy. It seemed like this was the test that was never going to happen. The day it was first scheduled for I ended up being inpatient for a port infection, Then the ENT who does them was out of the country for a month and they didn't have her schedule out for when she would be back. Finally I got it rescheduled and then it was cancelled because someone else needed emergency surgery. I was really hesitant to take any time off work for this procedure since I had little hopes of it actually showing anything. I explained that if I could not get in before I started my job I would wait till September and they managed to squeeze me in the Wednesday before. Much to my surprise the following Saturday I got an email saying I had a MyChart message. I opened the app on the subway to discover an email from my rheumy saying the biopsy was positive and I had Sjogren's Syndrome.
When I least expected it I finally got a diagnosis that may explain every thing.
At some point it clicked in my head I was not actually helping myself by being so focused on answers, especially as more issues developed. I finally shift my focus to making the most out of life while living with my symptoms, I started to look at treatments from a quality of life perspective with the realization that my quality of life was more important than pin pointing exactly what was causing my body to fail so spectacularly. For a few years that has been my focus. I have actually had a few doctors comment on how impressed they are by the fact I am not super focused on answers, although I have always found that an odd complement. Yes it would be nice to have something simple to say when people ask what is wrong with me but it is not the be all end all. Of course you always find the answer after you stop looking.
A few months ago my pediatric rheumatologist thought it might finally be a good time to transition me to an adult rheumatologist. I was stable from her perspective and about as stable as we would probably get for a while in terms of my overall health and she wanted to see what they would say about my case. She referred me to a young adult rheumatology specialist.
I was a little apprehensive going into this appointment since I have had such bad luck with adult specialist so far. Both my peds rheum and PCP said how great this guy is and I trust their judgement but instead of taking as a comfort I took it to mean if I don't like this guy there is no one I will like. Thankfully I was very impressed. He went through all my past medical records with me to make sure everything was right. He told me everything he was doing and why. When he went on the computer he showed me the screen to see what he was doing. After examining my cuticles for autoimmune damage he not only showed me pictures of what the capillaries were supposed to look like and what mine looked like but he handed me the microscope he was using so I could look at my capillaries myself. He spent 1.5+ hours with me. By the end of the appointment I had the UCTD diagnosis I talked about in another post.
I also mentioned one of the test he ordered, a lip biopsy. It seemed like this was the test that was never going to happen. The day it was first scheduled for I ended up being inpatient for a port infection, Then the ENT who does them was out of the country for a month and they didn't have her schedule out for when she would be back. Finally I got it rescheduled and then it was cancelled because someone else needed emergency surgery. I was really hesitant to take any time off work for this procedure since I had little hopes of it actually showing anything. I explained that if I could not get in before I started my job I would wait till September and they managed to squeeze me in the Wednesday before. Much to my surprise the following Saturday I got an email saying I had a MyChart message. I opened the app on the subway to discover an email from my rheumy saying the biopsy was positive and I had Sjogren's Syndrome.
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| Cause Post Lip Biopsy I Deserved a Smoothie |
When I least expected it I finally got a diagnosis that may explain every thing.
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