All posts tagged: Living with EDS

Post-Wellapalooza 2017 Annihilation

Published by HypermobileYogi

Definition – “annihilation [uh-nahy-uh-ley-shuh n] noun an act or instance of annihilating, or of completely destroying or defeating someone or something: the brutal annihilation of millions of people.  the state of being annihilated; total destruction; extinction:  fear of nuclear annihilation.” – http://www.dictionary.com/browse/annihilation  The feeling of post-Wellapalooza 2017 annihilation called for a lot of sleep and self-care at Shakthi Health & Wellness Center. And my headache is gone!  Love this place!

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 …

My #Just5Minutes Parting Gift

Published by HypermobileYogi

While walking on the treadmill last night, I felt the top of my hand get tighter and tighter. I also felt a hot stinging-like pain. I finally stopped walking (I wasn’t walking super fast either), tried to open and close my hand, but it hurt a lot more than I was expecting. I hadn’t actually looked at my hand until that moment, and I suddenly realized why it hurt more than usual – I had a small vein rupture, sometimes referred to as a hematoma. It was more swollen than other small ruptures I’ve had before. I iced it, and the pain slowly subsided, but I can’t say it looked much better afterward.   For the record, my “just 5 minutes” was way more than just 5 minutes, despite my annoying issue. My at home workout today: – 30 mins on indoor spinning bike – 30 mins walk on treadmill (3.0-3.3mph) – 25 mins PIYO Buns workout – 30 mins PT/Strength exercises Pics of my hand that will take forever to heal now: Reference for …

#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 …

Autonomic testing before my business meeting at 3pm

Published by HypermobileYogi

Days like today are why I’m grateful that the life I live and the work I do overlap. Gratitude.  Link to the autonaumic nervous system test (Ansar Testing) that I had done – http://www.tlcdiagnostics.com/patients/tests-and-procedures/ansar-testing What is autonomic dysregulation? http://www.mitoaction.org/guide/autonomic-dysregulation You can also visit www.dysautonomiainternational.org to learn more. 

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. …

Yoga and The Hypermobile Yogi

Published by HypermobileYogi

Yoga and The Hypermobile Yogi – Managing Chronic Pain and Stabilizing Joints with Ehlers-Danlos syndrome (EDS)   “Yoga is dangerous for EDS.” “I was told not to do yoga.” “Yoga will make you end up in a wheelchair.”  I’m sure that you’ve heard all these phrases before, and many people feel that that all three are absolute truths. While we all are entitled to our opinions, the fact is there is no black and white factual statement that has come out about doing yoga when you have Ehlers-Danlos Syndrome. Usually, our ideas stem from personal beliefs, from what we have been told by someone we trust, or from our experiences with yoga. We are all different, and the truth is what works for someone else, does not work for you and vice versa. This applies to the practice of yoga. There are countless people with hypermobility/Ehlers-Danlos syndrome, who have been practicing yoga for years and have done well. There are also those who tried it and did not have the strength, nor were self-aware enough to know …