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The Mitochondrial/Motility Journey
#MitochondrialAwarenessMonth Sept 22 our online/ offline awareness day! How do I tell you about my mito? The easiest way is to describe how your organ systems behave when you age. Yet in a mito malabsorption dx my bones were 86 yrs old but I was approximately 40 (when this began.) my hearing & eyesight declined. I had cataract implants way earlier than you would anticipate. My GI issues … at…
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#MotilityMonday in the #MotilityCommunity we estimate approximately an online presence of 16000 or more with support groups in for #Gastroparesis #ColonicInertia #CIP #MOTILITY issues there is some overlap of course, but we see an advocacy group of approximately 3000 who crossover onto our social media platforms. We seek to increase our advocacy numbers and pass our #motilityBill #HR1187 in the USA we would like to live -not suffer in silence- yes we have moments of mental confusion! You would too - if you could not take in proper nutrients to survive and live to thrive! Then to top it off? Expel wastes! Not the time for delicacies of “too much info” nope time for the #GPReport straight talk - We fail to thrive because our digestive tracts do not function on various levels, we do not,still have, enough medical specialists to deal with the complexities of the multiple organ symptoms this attacks... thereby it is misinterpreted and mishandled to the detriment of our community. We are unable to eat and absorb nutrients in varying degrees and thereby unable to move our bowels in the same varying degrees. Some cannot move them on their own due to the severe nature of the malfunction of the Motility issues it is PAINFUL to not be able to poop! We are sending a #CallToAction in Memoriam of #Advocacy with #TakeABite4GP & #HR1187 #USA let’s act to make more change ! We have made changes Let’s make more! With much ❤️ love #PassATag to a #Warrior #BuddyCheck they need you we all do!
Spoonie blog Colonicinertia
Cardiologist appointment - Health update
Well first I went to the wrong office but it later turned into a really good mistake and the Dr was very happy about it. The Dr is concerned about my cholesterol since I've been on simvastation since I was 15 and my cholesterol is still really high, they changed me to this other one tristation but I'm being sent to the lipid clinic so they can work with me. The Dr said I'm not text book and am rare to have the stuff going on that I do/have/tied together meaning Born with kidney reflux, headaches growing up and my bowels starting as a kid but all normal blood work.. No one thought about doing more tests everyone brushed me off for years. He ordered a echo cardiogram, stress test and a CT scan of my chest because the blood clot from pregnancy still could have broken off and be moving up BUT I don't think that ones true.. Since I have all medical records fr 18-21 with multiple visits to a cardiologist, urologists and GI. The problem is they are all connected to my nervous system. I brought up the POTS syndrome and he made me a appt for the 28th to meet with a higher up cardiologist. All my tests are sept 4th. I still feel so many flutters in my chest and pain.. The nausas and headaches. I'm like almost 3 months post op now and still very set off by different stuff. The last two days I didn't think I ate anything different but today I have 3 real bad BMs, liquid.. Just ..real bad. My incisions still are so tender and get aggrieved but I definitely still feel amazing and thankful to finally have had my surgery. The coolest part of my day yesterday after the crazy cardiologist appt. I got my no colon still Rollin shirt!!!!!! I love it
