All posts tagged: MCAS

Living with MCAS – “It’s nice to meet you too.” 

Published by HypermobileYogi

Saw a new MCAS doc today. Other than my main docs, I do not have a local doc who understands MCAS and issues associated with sensitivities to meds, etc. I’m not one to doctor shop and don’t have time to anyway, so I’ve just dealt on my own – barely. However, things have gotten worse, especially associated with hormones. Two times a month, my body decides it really wants to party hard (more than usual) by attacking itself and anything I eat or take. Fun times. My husband came with me and after we discussed the main gist of why I was there with my new doc, I asked her about allergy testing. I wanted to ask her for two reasons: 1. I’ve never had it and am somewhat curious. 2. Her response would give a good indication of her knowledge and understanding of MCAS overall – particularly for my case. Of course, I could be “allergic” to something more traditional and that would make things a lot easier – right? My new doc’s response …

Living with EDS and MCAS

Published by HypermobileYogi

When you are the founder of a 501(c)(3) nonprofit and your focus is on serving those with Ehlers-Danlos syndromes, Hypermobility Spectrum Disorders, and related conditions, this is how you roll to a new doc apt. And again tomorrow too … I just want the hot spots on my thighs, the millions of pins and needles that are all over that are pricking me, and the cold breeze blowing on me, to stop. Otherwise, I may lose my mind. #RealLife #AllClearDermCheck #LivingWithEDS #MCAS #EhlersDanlos #NewLocalMCASDoc #PrayingSheCanHelpTheseReactions #AlreadyWarnedAfrin #LivingWithTheTrifectaIsARollerCoaster

When your pharmacist hands you your script refill and tells you that one of the only two meds you take was filled with a different generic….

Published by HypermobileYogi

You end-up mass purchasing the only clothes/loungewear/PJs that does not hurt your skin because everything else feels like a razor, and only adds to the burning feeling radiating off of your body in several places. I will surely say “no thank you” next time a script is filled with a different brand of generic of a medication or supplement I take, because feeling like my veins may burst open through my skin from the horrid pressure and swelling, should be enough in and of itself. Or, the feeling of my hands and fingers being inflamed, swollen, and stiff from pain would be enough as well. And the feelings of having hot spots all over my body and that my skin is burning in places should also be enough to make me say “no thank you” next time also. Oh, and the feeling as if my skin feels is burning on the inside, yet is actually so hot to the touch on the outside also that it does seem as though I may have been burnt …

You know that you have mast cell issues when … 

Published by HypermobileYogi

You react to something in an “organic” Cliff Bar – or, it’s probably the “natural flavors.” The reaction started as soon as I started taking bites and then just got worse. And that was this morning. It has not let up. I’ve taken cromolyn sodium and have tried to avoid needing something else, but I can’t get it under control. I feel terrible – sick to my stomach and like I have hot spots all over my body with a million needles pricking me. I also feel cold and chilled – like a cold draft is constantly blowing on me. My bladder is also been on fire. That was one of the first really bothersome signs that I was having a bigger reaction – bladder pain woke me up and I felt like it was burning inside of me. This is when I hate Interstitial Cystitis (IC) with a passion. My body is clearly flared and angry because I also got an ocular migraine for the first time in 5 years. Resources:  – What is MCAS? …

Just another liberal disease

Published by HypermobileYogi

I just shared this article (http://www.foxnews.com/health/2016/11/15/minnesota-woman-allergic-to-husband.html#) on Mast Cell Activation Syndrome (MCAS) written by FoxNews on my personal Facebook page. Considering I published Dr. Afrin’s book on MCAS called ‘Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity‘ (Dr. Afrin was the “online physician” who was quoted in the article), I can say without a doubt that MCAS is more than real, and can be incredibly disabling, not to mention isolating. It can also cause death. People are dying because of constant misdiagnosis, medical errors that can be avoided, and because of ignorance such as the comments in the images below. Dr. Afrin’s book currently has 92 five star reviews on Amazon.com — and for a good reason. His book is doing so well because MCAS is far from another “liberal disease” that people can use to get disability. Dr. Afrin is also anything but an “online” physician. He is one of the few physicians in the world that MCAS patients have on their side to …

#Just5Minutes – 20 mins cycling at home and the other side of needing meds to help you focus 

Published by HypermobileYogi

Sometimes you just aren’t feeling like it. Other times there’s so much going on that you have to choose sleep or to exercise. Most of this week, I opted to get sleep because how much it affects my brain cognition, my ability to drive and to get through a day of non-stop appointments, meetings, conference calls, and life. It was also my birthday this week, and I usually love to book my favorite classes back to back, just because I can, but that didn’t happen this week. It didn’t happen on my birthday either. I have been feeling very run down this week, and more than frustrated because of how I felt. I didn’t understand it. It didn’t make sense to me. I was getting sleep but felt like a train wreck when I woke up. Part of me couldn’t believe or accept that the way I was feeling was because I crammed hard for the C.H.E.S. exam last Saturday. It had been several days since I sat for the exam and it didn’t make …

The Constant Whooshing in My Head …..

Published by HypermobileYogi

When you have constant, non-stop whooshing in your head (no, not just tinnitus), you’ve been diagnosed with Classical Ehlers-Danlos syndrome (CEDS) 3x, but genetic testing came back negative, and the EDS world really doesn’t know what you have – other than you have some kind of connective tissue disorder that’s not Marfan Syndrome, VEDS, or other more common mutations …… They do know that you have 2 CBS Gene mutations and a few other genetic mutations, but they haven’t determined how any, if at all, play a role in a type of EDS, or a connective tissue disorder that “looks like” Classical/Vascular/Hypermobility-types of EDS. And there’s no identified genetic marker(s) for Hypermobility type Doctors and genetic testing has also determined that you have 2 CBS Gene mutations and a few other genetic mutations, but they haven’t determined how any, if at all, play a role in a type of EDS, or a connective tissue disorder that “looks like” Classical/Vascular/Hypermobility-types of EDS. And there’s no identified genetic marker(s) for Hypermobility type EDS, unless you count TenX. …