So, I had a long day today… well, not all that long, but used a LOT of spoons. drove 40min to get to my client’s playgroup to work with him (loads of fun actually) and then booked it back to the city for the Rheumy appt… well, apparently the Brain Fog is in full effect and the appt was for 3:15pm NOT 11:30am. Sigh. So I go home, get some lunch with the boy, and get ready for my psych appt. That appt went well, hard, but well, as it usually is. Then off to the Rheumy for the 2nd time. I explained to him what the geneticist said and he asked about blood test and the skin biopsy. I told him the geneticist didn’t feel that was necessary because I meet the diagnostic criteria for EDS-III and I might have some vascular involvement. He said that without the tests he wont call it EDS, just hypermobility (he also said I don’t have the skin stretchiness so its not EDS). WTF!!! The GENETICIST–the PERSON who is SPECIALIZED in the condition said there was NO DOUBT that that’s what it is. Sigh. He checks my joints and gives me a script for PT. Hooray *insert eye roll* My primary had no doubt, the GENETICIST has no doubt… and why would I WANT to have this condition… granted having a name to it all feels validating… but, with the conditions comes a LOT of pain and other things. I feel like he doesn’t care or because he doesn’t know a lot about it, he thinks it doesn’t exist. At first I felt like he took the validation I got from the other drs and threw it away. You know what though, I have 2 physicians that say its EDS, and a psych that believes me. They all believe I am in extreme, and some times debilitating pain, and feel that I can not work a full schedule. Rheumy says I may have to reconsider my job and get a desk job. Why, so I can bring back the migraines??? Uh, I don’t think so. I LIKE my job. It’s rewarding. I just can’t do full days. That appt was a waste of time, money, and energy. Now I am home, in pj’s, medicated and not doing a damn thing all night.

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