Hi, I'm Stela! I make lighthearted videos all about my life with chronic illness and disability. I raise awareness on Ehlers-Danlos Syndrome, Lupus and Lyme Disease. I also talk about the co-morbidities that go along with them, such as: PoTS, Mast Cell Activation Syndrome, Fibromyalgia, ME/CFS, Peripheral Neuropathy and more...
I watched half of your video at this time and it's totally informative and supportive ❤ I was procrastinating to watch this video a whole year out of fear of feeling sorry about myself and that didn't happen i felt belonged and heard. Thank you for sharing ❤
I have mcas because of being exposed to mold in an HVAC system five years ago. Been to many doctors and did testing. All were totally useless and a waste of money. I have done research on my own and have discovered many connections between high estrogen, estrogen dominance and high histamine. The late Dr. John Lee has several books about balancing hormones. I have researched everything I can about natural over the counter bioidentical progesterone cream. Not the kind from a doctor's rx. Progesterone can't hurt you. Estrogen can. So, I started Emerita Progest last week. Also, using Milk Thistle for constipation and to help repair and clean my liver and detox from estrogen. You have to use enough progesterone according to your symptoms. Your symptoms may get worse as you detox from the estrogen. Estrogen raises histamine. Progesterone lowers histamine. It will take awhile for your body to balance. You do not need a test. Go by your symptoms. Go to Dr. John Lee's website where they have a test for synptoms. Go to Barbara Hoffman's website. She talks all about progesterone and hormones. Do not read sites like web me or Cleveland Clinic. There are a lot of studies about progesterone and the brain, gut health and immune system. There has even been a study on long hauler covid and progesterone. Do the research. It's out there. I hope anyone who reads this will look into it. I went to naturopathy and they said you don't need progesterone. Men and women always need progesterone whether you are young or old. I hope this helps.
I had the tilt table test this morning. As someone else mentioned it is like slow torture. Horrible horrible experience. I only fainted 15 months ago for 3 seconds but have to go through these tests to get license back. To say it’s extremely uncomfortable is being disingenuous. I’m a 56 year old postman who’s been through a lot. I lasted 20 mins but it got too much. They want you strapped upwards for 40 mins. No chance. I had to tell them I’d had enough. Didn’t feel or experience fainting. The only thing I felt was extreme anger and frustration been tightly strapped.
I have to think about every single move I make as well! ❤ Thanks for coming forward with your experience. I always knew there was a reason why I never got into dancing or aerobics. 😊
Amen sister!! 3 rare pancreatic conditions after over a decade of medical gaslighting. Was told sarcopenia because I no longer have glucagon was just sore muscles. Was asked if I was more tired than usual, but I had an undiagnosed heart condition from birth than needed a pacemaker. I said, “ no more than usual.” Ugh after a car crash caught my misbehaving heart in action on an ambulance ekg post rollover it was found my “usual” to be a bit worse than his usual. Medical gaslighting is real, and I have had to block all but one of my 6 siblings as well as my parents on my phone. I told my mom I was being put on a feeding tube for three months and was lectured about respecting my elders. I had a GI specialist not send my biopsy into a lab then falsify records after another one caught my Exocrine Pancreatic insufficiency, Gastro Paresis, and even rarer diabetes type 3c. How could I have faked this labs and EKG?? But my mom says I’m a hypochondriac and I have my lab results with my name on hospital stationery. Dear god this is hell!
Narcissistic parents invalidate everything you feel and treat their children poorly. It’s easier for them to deny your illness so they don’t have to provide support. Their children are conceived to serve them, so they will abandon us if we get sick! Gaslighting, invalidation, are Narcissistic behaviors.
“Have you tried a pancreas transplant “ uhhh … people live without them after whipple surgery, why would I want immune suppressants too on top of 3 rare permanent disorders
Growing up I thought everybody got lightheaded and dizzy when you would stand up. Gen X kids you just suck it up and move on. 2012 my systems really got bad and I got diagnosed with POTS/dysautonomia in 2016 CC. My youngest his hyper mobile joints won’t get diagnosed. My middle son started passing out when he was 19. I think we all have a variation of EDS.
I have bursitis in both shoulders and both hips I have osteoarthritis, torn rotator cuff, I can't use my cane cuz it hurts my shoulder, elbow, and wrist, so no one believes I need my wheelchair cuz I forget I need it and take off without it same with cane I'm so forgetful I can't stay on task and I feel I'm bleeding internally in my hip joint from bone spurs and impingement syndrome femoracetabular kind fibromyalgia I feel I torn my it band....doctors look at me sideways when I say I'm in level 10 pain because my blood pressure is low 98/56 um blood work don't show I'm bleeding internally 😢idk what to do they send me home with instructions to return if I experience them and I came in and was leaving with same symptoms I'm just totally confused
The guilt is a horrible feeling. Feeling like a failure and a burden to our loved ones is very destructive for us. Nothing about chronic illness and pain is easy. Hence the high suicide rate of us sick people
There’s no one that can help me & I’m literally losing my mind, tired & exhausted from being in pain all of the time & it’s even exhausting talking about it again & again & I’m feeling like I’m losing the battle, it’s been too long.
Great review. Thanks for all of the detailed information. I have the original CI and it’s really hard on bumpy services. Considering getting the Ci2 because of the suspension.
Thank you for video. Sjögrens Disease, from Sjögrens I has acute asthma now, Osteoarthritis, Food allergies! Grieving is what I'm doing mostly now, everyday is something different. Just Thank you for seeing me. ❤
i HAVE BEEN FIGHTING FOR A DIAGNOSIS FOR YEARS. After recent heart surgery, my symptoms doubled down. PoTS? YES. My heart rate did a 75 to 138 in the hospital upon standing. I get dizzy and vomit. Now of course after vomiting they said it was because I am dehydrated but now, I realize that as my heart rate increases my blood pressure decreases until I start to fade out. Lots of reasons, maybe but it is pretty persistent, Cool 72 degree river water is my best curative. I kept saying this was happening,It was ignored, now I have film of my ekg while I stood. The o2 monitor lets me know how high, and how fast
I tried the "poor man's pots test" and these were my results - **Heart rate after ten minutes of laying down:** 60 bpm - **Heart rate about 20 seconds after standing up:** 104 bpm - **Heart rate after one minute of standing:** 84 bpm - **Heart rate remains 84 bpm up to five minutes, then 80 bpm after ten minutes** Do u think I might have it? Seems like if I do it might be on the lower end of the spectrum.
I know this is several years old now (I just wanted to check out this particular cane as it’s cute but the light issue (the flicker) is concerning for the cost!). Anyway you’ve probably already figured this out by now but make sure your forming a triangle when you walk for max stability by swinging your cane hand out with your opposite foot (which should be your most unstable foot / knee / side) . It’s pretty natural to how you would normally walk and swing your arms. All of the how to videos with doctors on youtube give a great visual on this. That was the first thing I did when I got my cane. Watched a video and then consulted my doctor to make sure I was really using it correctly. Hopefully this helps!
Unfortunately the guilt you feel when in chronic pain and the destruction it corses the one's we love and care for can eventually after 22 years of inhumane chronic pain destroyed everything about yourself
Do you ever get confused as to which leg is in front when you are laying on your side? And end up kicking the cat you were trying to avoid? I mean how can a body forget which leg is which!?
I mean, with rehab chairs you do know how used one is because they have odometers. My used power chair had 11 miles on it. But rehab chairs do cost a lot more. My chair was $38,000 new. (I bought it for $1600.)
You have a really stunning collection. I have been collecting for many, many years and my crystals are among my most treasured possessions. I would love to hear where you shop for some of your pieces. Thank you for the lovely tour :)
HSD have the same variety of comorbidities. The only difference is that they don't meet the specific criteria on the diagnostic checklist. There are EDS & HSD can both be hereditary or spontaneous. They're working on updates to the 2017 criteria called the road to 2026. Thank you for sharing all of these. It's always amazing how many things can be affected and the different ways they can manifest.
