My goal for this site is to be the resource I wish I had when I was freshly diagnosed with these conditions. I strive to organize, share and make sense of what I’ve learned, and to link to the best resources I’ve found. I hope to make someone’s life easier. These conditions are incredibly complex, still poorly understood by the scientific community, and afflict a person in a completely holistic way. Doctors will provide powerful options, but don’t stop there. I’ve learned there are countless more ways to adapt and improve your quality of life, and every little bit has helped.
I’m finally in my thirties and suffered from significant symptoms for about 4 years before getting diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome) and MCAS (Mast Cell Activation Syndrome), which actually makes me normal in a way. It takes most of us years to get diagnosed. I’m a mechanical engineer, and have lived in Southern California most of my life. I made it through UC San Diego, UCLA for grad school, and went on to get my PE license. I’ve loved solving problems, but my health has been the most difficult challenge I’ve encountered. It makes engineering school feel trivial. I can’t build myself a new body, or get a brain transplant. Instead, I’ve worked hard to find great specialists and treatments to get the best quality of life possible. Then, I’ve had to work on the penultimate challenge- acceptance.
Getting a diagnosis like POTS can be liberating, because despite years of vague symptoms met with dismissive or confounded doctors, you learn you’re not actually crazy or a rare isolated case. You are not uncommon, and now there’s hope because with a diagnosis comes targeted treatments to try. At the same time, it’s also disheartening if not completely depressing because it’s not curable (at least not yet). Then there’s coming to terms with this new life for now and the foreseeable future. No doubt I’ve mourned the life that I expected to have. Emotionally, it’s kind of like having a devastating midlife crisis 20 or 30 years too early without all the fun parts.
Though a lot of us are stuck or slowed down in our lives in many ways, it’s not over. I hope you can find some hope and relief in any measure. If you want to reach me or have any suggestions/comments/funstufftoshare- reach me at the contact page.
P.S. I bet you can spot my joint hypermobility.