All posts filed under: Personal

13 Years Ago Today ….

You can never be prepared for certain things to take your breath away, but memories like this sure do. They also leave you permanently attached to the people who were with you at the time – both family and new friends you had only recently met. I wasn’t initially sure why this picture showed up on my FB memories – especially as a memory from 3 years ago, and because my mom passed away over 10 years ago. And then I realized why – my mom passed away 13 years ago today – I had just found out 10 days earlier that I was pregnant with my first baby, Johann, who we named after his Bedste.

My husband and I are engaging in a “buff body contest” (BBC)

We’ve done this before and according to my friend Laura, my husband won.  I stated that he just had a lot more change to make = more drastic results.  We’re probably fairly equal right now; however, he’s a guy and has naturally muscular genetics and testosterone on his side. He’s also abnormally strong. Like freakishly strong, which prob means more testosterone than most.  I have no natural muscle tone, have to work my _ss off for the little muscles I have and have like 0 testosterone. (Yes, women are supposed to have testosterone and I have none.) What I do have is my friends at Healing Histamine by Yasmina Ykelenstam & Shakthi Health and Wellness Center on my side, because it’s all about diet anyway – right? So, give it to me … All ideas. I have 4 weeks starting today. I already workout, but am game for new routines and ideas.  ‘Cause I will win. Not sure what I’m winning, but still … I will win.

Post-Wellapalooza 2017 Annihilation

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.” –  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!

Love my babies – no matching outfits, unshowered, sandy and sunkissed. Best kind of pictures. 

Before I was knee-deep in launching a 501(c)(3) nonprofit, planning wellness retreats for patients and holding physician learning conferences, or before Sisters Media branched out into print and digital publishing for medical and health field, my main love other than working out, was photography. Still is by far one of the things I love the most – especially when I actually use my good camera. 😉 

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

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

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….

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 …

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

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

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 – What is autonomic dysregulation? You can also visit to learn more. 

Wego Health – Health Activist Awards Nominee for Lifetime Achievement Award

The other day, I found out that I was nominated for the Wego Health Lifetime Achievement Health Activist Award. Even though I’m not familiar with this process and how the winners are chosen, it’s an honor to be nominated. Below are a few links to the nominee profile that I was asked to set up, how you can show your support, or nominate someone else. There are several categories for the Health Activist Awards by Wego Health and people can be nominated for more than one category.  My nominee profile page – Link to Wego Health Awards – Who are some of the outstanding Health Activists who enrich the lives of others by sharing their experience, knowledge, and strength? Nominate them for a WEGO Health. Link to submit a new Nomination – Bio: Kendra Neilsen Myles holds a B.S. in Public Health/Health Education from the University of Maryland. Kendra’s public health, health education, and wellness coaching experience includes program development and implementation, as well as working in patient triage and serving as a liaison …