So I have been trying to get into a geneticist at my local hospital per my neurologist’s recommendation, to test for Ehlers Danlos Syndrome. Good news, I might finally get answers. Bad news, they are booking out till December. I have soo many questions and have had them racing around in my head accumulating for over a year, waiting for someone to pull the leaver and have them all come spilling out. Frustrations with my cardiologist who I feel is not a right fit for me, and trying to find a adult primary that takes both my insurances are just more reasons I feel like I can’t reach the surface and am running out of air. It’s almost comical how a chronically ill person’s life can go from ‘top of the world’ to ‘handle with care’. A few weeks ago I was camping, in less pain, and actually enjoying being out and about. If you read my last blog you’ll understand how awesome I felt. Then I came back to the Valley and it was like I got caught in a landslide. Work dilemmas, insurance crap, appointment challenges, my health declining because of this god damned retched heat. It was a shock to come back and suddenly feel disabled again, I still can’t believe how much of a difference a change of scenery made. I’m just glad I can talk to my neurologist soon and discuss some ideas I’ve been itching to get out. I just hope I can get some answers soon before my head explodes. See y’all soon ❤
Well my cardiologist appointment went decently, I got some answers but they were mostly what I have been told before so it’s not anything enlightening. Basically I was told that, and I quote my doctor, I ‘almost have Postural Orthostatic Tachycardia Syndrome’ He said I have all the symptoms except for the fact my heart rate only goes up about 20 beats when I go from sitting to standing as fast as I can. People that have POTS have heart rates that usually go up about 40 beats or so. I’m glad I don’t have POTS, but I’m frustrated I still don’t have anything to put my finger on and say ‘that’s why I feel so dizzy and nauseous today’ But I may have to come to the realization that I may never have solid answers. I have been told by many doctors that people like me who have chronic dizziness and fainting, sometimes just have chronic dizziness and fainting because that’s the way their body works. Now that sounds like a loud of it to me but hey, I haven’t studied medicine for umpteen years. So to remedy my symptoms hopefully we are trying a new medication that raises my blood pressure. I’d really rather it not do this but I trust my doctor and it’s the only type of symptom relief that won’t interfere with my other meds. I’m also transitioning from Pediatrics to a regular Cardiologist in the next few months; stressful enough as that is, I’m excited because I will be able to get a second opinion on my condition which always seems to give me a bit of comfort. More updates will come soon as I have a upcoming Neurology appointment this week.