Відео

Nice speech! I nearly didn't click on it because of the title, but I took the chance and it turns out we have the same opinion on this ableist statement.

Hi mischelle, i have the same problem on my left foot. May i know what i need to do? Thanks

I have PoTS , EDS and various other exciting co-morbids. Your blog is amazing!!

I posted a video today about the same subject..I had been diagnosed with anxiety and for many years I thought my physical problems were all in my head...I could have died..At the beginning of the month I went to the ER and finally found out I had appendicitis and it was gangrene..I also was diagnosed with osteoarthritis and sciatica..I suffered for a very long time because every time I tried to get help they told me it was anxiety and sent me on my way.. I will never let them tell me it's anxiety again..I was actually sick! Do they think people with mental illness don't get physically sick? Now since surgery I know I was never mentally ill at all..I am no longer terrified I'm gonna die..I no longer am afraid now that I know what is wrong with me..I have a few physical issues besides the appendicitis all because they kept saying it was in my head..Something is wrong with the medical and psychiatric so called profession..I as well shared a video of my experience...

Thanks you for being honest.

I know where you're coming from Michelle... It is really hard when even medical professionals treat you with disbelief and misconceptions. I'm glad you are doing something to help explain it to people. Hope your health improves at least in some degree.

Looking back, without diagnosis I'd probably be dead by now. Or, at least, wishing I was. When is it that so many doctors decide that if a person does not have a recognizable illness they must not be really ill? Don't they realize how much they can hurt us, our spirit, and our core beliefs in ourselves?

You did amazing :) x

Thankyou Michelle (also read your blog at times, facebook friend) Thankfully on my first apt with my neuro, he just got it. he just Knew I wasn't coping anymore, He just got it, and it wasn’t as though he was saying the issue was I am depressed, he understood that the new depression stemmed from everything else, (and he had examined me already, so he also knew it wasn't in my head, you can't fake reflexes not working haha... oh the look on his face as he tried to make them work was funny to me). After he has asked me to try to go through my medical history, and I tried.. Hard as 90% of the symptoms I was there for were vague, or were things I’d shrugged off for years and years, or blamed on pain, or period, or medication, I told myself it wasn’t a real issue… Eventually he stopped me, looked directly at me and said, "so basically your saying none of your body feels or acts *normal* anymore" (something very close to that). It wasn’t a question, he just got it! it didn't come with a speech about how that was impossible or all in my head, he understood. At that part I just started tearing up. (even when I spoke to my family dr, it was very much *why are you telling me this now* as some things have happened for years, what they didn’t understand is if I complained to them about EVERY weird thing, issue or symptom I have I’d never get any medical care, so I filter myself and the neurological type symptoms I personally filtered out of my own medical history, as it was “just me” or “that medication” always something, something I had heard before or knew a doctor would say, it wasn’t till things got much worse with my fever that I’ve now had for 8months daily, did I start to connect the dots and clue in that something wasn’t quite right. Thinking back however I have had many of the symptoms since I was as young as 14 that I can clearly recall, now 13years later, and a month before my 27th birthday did the doctors first start looking into things, they suspect I have multiple sclerosis. As I was already on a low dose antidepressant for other medical/pain reasons he asked what I would think about trying a full dose, so would help pain issue and my mood. I told him even though as a teen I’d sworn never to touch antidepressants again I would give it a try, I was at the point something needed to change, either medically or mood wise, I was now to overwhelmed to cope. He also made sure to prescribe the one least likely to cause a bad reaction as I had my fears over them. It was great I could be honest with him about my where I was mentally, but it only happened as he got it out of me, not something I would have come out and said if asked how I was doing, like you I always answer "yeah I’m fine", and until a few months ago I really was, but when things changed mood wise I couldn't bring myself to answer anything differently cause I to have been told things are in my head too often. (Unfortunately the antidepressant he gave me did nothing as mood still went down, tomorrow I pick up my new script and hope it works for me) I am so happy to have a neurologist who can see my neuro issues, and consider I might be overwhelmed by everything, but not blame my neuro symptoms on my mood or say they aren’t real. In fact my appointment with him was the first time I started to feel that the neuro issues I’m experiencing, aren't at least half "in my head".

So cute!

Thank you Michelle!

What doctor do you need to see for mast cell treatment?

Hi radlikemad, my diagnosis includes mast cell activation syndrome (not mastocytosis). Negative tryptase, but I respond to antihistamines. Testing included tryptase, urine methyl-histamine, prostagladin D2; response to antihistamines... No bone marrow biopsy needed.

Thank you so much for your reply. What is your diagnosis? Mastocytosis? How were you diagnosed?

Hi radlikemad (funny, my husband's initials are RAD. ;) Personally, I am on Ketotifen, Zyrtec, and an occasional Zantac. Amazingly, Zyrtec got my son back to school after 3 years of complete disability. Nausea? Dizziness? Is there a chance you have mild hydrocephalus. Those symptoms went away for me after decreasing my intracranial pressure with Diamox. HUGE HELP. Hang in, radlikemad! ;)

What treatment are you on for mast cells? I am thinking this is a part of the puzzle for me as i am basically bedridden currently from a dysautonomia flare up. my main symtoms with dys have always been nausea, stomach problems etc.

This was right on the mark with my experience as a dysautonomic mom. It was comforting to see another mom expressing the same feelings and thoughts.

Glad I could help even a little. It's hard to keep the old emotional brain in line when it comes to our kids. :)

Thank-you so very much for taking the time to do this video. I just wanted you to know how much you helped a guilt ridden mom here in Canada with three boys. I know these things, as you so brilliantly put with my logical brain, but the emotional part of my brain needed to be reminded. Thank-you for taking the time to do that :) ~Jan :D

Just wanted to thank you for your contribution to the online health community. These videos are incredibly educational and provide a glimpse into what it is like to live with Dysautonomia. (Something I knew little about previously) You are a true Health Activist! You may be interested in checking out other Health Activists on the WEGO Health UA-cam channel. - The WEGO Health Team

@ThorDogk9 Got a Facebook account? Search Zebras for Life... and you will have open arms for you. Zebras for Life is a support group on Facebook for Ehlers-Danlos Syndrome, Dysautonomia, POTS, Chiari Malformation, and all the many invisible illnesses. You are welcome to request to join. :)

Sweetie, did you try mast cell treatment, yet? My gastro issues were so SO bad that I had to run to the bathroom if I even took a sip of water, and I lost a lot of weight and was unable to absorb nutrients. It didn't take long before mast cell treatment reversed the problems (days!). Some GI docs are using it for "irritable bowel treatment." I have some info on my Prettyill web site. I hope it helps!

XXOO You so need a break. Massive, suffocating hug to you!

I so agree about grief. This needs to be said and heard.

PPP I like that. :) Self compassion is the hardest of all.

@kezzcass now there's a plan. You are truly brilliant my friend.

@ThorDogk9 Why not take a combo of the two??? :)

@kezzcass thanks babe. With your warped sense of humour I'm not surprised that you liked my recent posts LOL. Body transplant I'd still go Heidi Klum, looking that good after all those kids bodes well for the future. Though Selma Hayek has those great womanly curves and that's be a nice change. Decisions, decisions :P

Nah you should Twitter/FB/etc - you have been hilarious :) (Is it bad I think that's funny?) Question: If you had a body transplant, who's body would you take? In all seriousness though, you are beautiful and as I always say, a gift to me and the world. Love ya chick xx

Thank you for sharing :) On my bad days of MS and I have to take care of something, (and its not their fault) folks say YOU LOOK GREAT! and your feeling like dirt! I can't be angry with them anymore or say they our ignorant for they have better things to do then learn about MS, most ppl feel by sight if am on crutches or in a wheel chair or no visual problems! they just don't see into our world! I gave up being angry with them its not worth my special time I have.to enjoy my good times

love it

I love chocolate with coffee with you - I prefer Spring but happy to visit Winter anyday. Love you heaps chick. Kerri xx

thanks guys :)

awww i love this so much :)