Living In Ignorance How I Didn't Realize I Was Disabled
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- เผยแพร่เมื่อ 12 มี.ค. 2024
- I was almost 47 years old when I discovered that I had Spinal Muscular Atrophy. I had suffered from weakness my entire life and didn't have any answers.
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It's horrible when you know something is very wrong,but nobody will listen to you.
Yes it sure is!
And worse when you think you could do these things but you must not be trying hard enough
@@beccasteele6874 yes! It’s an awful feeling
I am so sorry for your experience....I had tears in my eyes... recalling my daughter's childhood when I knew something was wrong with her and I kept being dismissed and told I was paranoid, over-protective etc because she was perfectly healthy. I finally got her primary pediatrician to listen to me and he referred her to a cardiologist and at 15 years old we found out she had been born with congenital heart defects and because they weren't diagnosed she has a heart/lung disease that has no cure. She is on oxygen and takes medication one is a IV medication through a central line. It is so sad that doctors do not listen and just brush you off... it still happens to this day with my daughter. You have to be so aggressive. Thank you for sharing your story.
I’m so sorry to hear about your daughter! It really does suck when we are just brushed off and people think it’s all in our heads.
It’s very encouraging to hear something so mysterious finally got figured out. It’s like you found the needle in a haystack! It gives hope:-)
I am very grateful to find out! It really helps me to be able to move forward!
Wow! I can’t believe the attitude of your first neurologist! This is important information that needs to be passed on to your children whatever the outcomes were.
I totally agree!
I am so sad that you had to experience all of those walls. I have had a similar experience except that I have an inflammatory arthritis and a number of other autoimmune diseases. It has made my life very difficult and at this point I cannot work. However when it first hit I had a lot of doctors either blow me off, or tell me they could see something was wrong they just couldn't tell what it was. So now I know it took 10 years to find out and it's progressed to the point I can't work. Other members of my family have the same thing and all of us went through phases where we just couldn't deal with the doctors again, or more tests to try to figure out what was wrong. I just want people to know, don't give up, keep on trying for answers. It's worth it, because you never know, there may be a solution out there somewhere, and if nothing else, you will have peace of mind.
Sorry to hear of what you went through. You’re right tho, never give up! 💕
I can't even begin to tell you how identical are stories are, but your attitude is so much better than mine has been 😂 No wonder I have been brought to your video, it has been a huge encouragement. Thank you for sharing your story!
I am glad I could offer some encouragement. Were you diagnosed with SMA?
I am so sorry. I empathize with you and I can tell you that I can understand and relate with you. I had been going through that too myself. This was so me. But, I was diagnosed with mild several palsy and and depth perception. I am so sorry you had to go through all of that.
I’m sorry to hear of your experiences as well. How long did it take for you to get diagnosed?
@@ketovorekandi I was diagnosed in my early adulthood. No one ever told me what I had but. I’ve always had to wear glasses and had weakness through out my body and had an hearing loss in both my ears and couldn’t ever run full speed or jump and jump off of things. When I would run I couldn’t run fast or my legs would give out on me and would be painful to get up.
I can definitely relate to the running part!
Same, and it was really hard being told nothing was wrong.
💕❤️it is hard to hear. And when we get that info, we don’t know what we are able to do to help ourselves.
amazing story.❤
Ty for choosing to spend some time lit🙏💕
You come off as such a sweet person. You definitely have a wonderful attitude. I've subscribed, hoping to get good news about your condition in the future. Much love until then.
Thank you so much!
I love this! thank you for sharing
Thank you 🤜❤️
God bless you hun x
Ty, Maureen ❤️
I love you Kandi. 💝
I love you too! ❤️😘
I had similar experience
Don't hold a grudge, but never forget how you were treated. And good for you for moving on all of this by yourself. Good job.😊
Ty. I appreciate that💕
❤GOOD ON YOU💐
Many many thanks
Ruth here, listen to Ken D Berry MD, he talks about diet, l really hope you listen to him, he backed up what l had figured out to degree
Good morning, Ruth. Ty for the recommendation for Dr. Ken Berry. I do love him and will continue to watch his videos.
Hi, I am pissed at Drs. You were in a world I know too well. I thought SMA came on early in child hood there is a TH-cam channel called Squirmy and Grubs and they're an interabled couple. and Shane the guy has SMA but he is, vsf I'm severe I mean he's in a wheelchair and the only thing he can move is one of his thumbs and he can move his head and he can obviously talk and he is so witty and he wrote a book called laughing at my nightmare. He also started a nonprofit organization for people with SMA. So by watching your video I learned something that it's a spectrum am I right? because you're still walking you're not in a wheelchair. I'm curious what symptoms do you experience now?
Thanks for sharing your journey.
Yes, there are different levels and severities of the disease. I have watched Shane’s channel and do enjoy it. ❤️
I had gallbladder disease,and changed my eating habits, because of debilitating pain when I ate.
Finally had it removed and still kept the same eating habits because I know from trial and error,some food is fine,but some makes me really sick.
Does eating a lot of fat make you sick?
What kinds of food make u sick?
I am so sry
Our society is such a failure, esp with sick women. They are dismissed far more often than not and FAR more often than men.
I am not asking u for this test. I’m telling u to get it for me! Ur MY dr. I’m not UR patient. U work for ME. That’s how I have to be.
You’re so right!
God bless ❤🫂✝
Thank you 💕
I have some muscle disease with painful weak muscles.My doctor says fibromyalga.I have dizzyness with it.I wonder about if I have MS.
Sorry to hear that you are dealing with that. Have you started to eliminate processed foods, carbs, and sugars from your diet?
Absolutely! Start on Keto and/or very low carbs.
Yes!!
Omg me too!! Rheumo says fibromyalgia. But can't walk straight line, bad vertigo, depth perception is way off, super clumsy, always knocking stuff over, etc...EVERY DAY!!! My body literally locks up if I go for a walk. My doc is great at gaslighting. Just wants to dispense pills. 7 years been this way. Hardly can drive. I go now where. Life sucks. 😢😢
Ugh. That is the worst. So sorry! I hope you find answers 💕❤️
Wow, what a story! I thought I was diagnosed late at 23. I’m type 3 and 56 now. Very similar stories. I also am keto/carnivore. Thanks for sharing ❤
I am so glad meet another SMA warrior that is doing ketovore! How long have you been at it?
@@ketovorekandi started keto 6 years ago but been mostly carnivore for the last year. I’ll never go back to the SAD way of eating. I wish I had known about it earlier.
@@liswoods9 I totally understand. I wish I had LISTENED to it earlier as well.
Doesnt carnivore diet cause having less energy because lack of carbohydrates? In normal healthy person this is easily measured and common effect that is well know. For someone with musclular disease the effect might be even bigger since body has less strenght. Of course carnivore is good if youre trying to lose weight but being constantly in it might not be that great...
@@xxxyyy1880 the carnivore diet gives me more energy! Because I don’t eat carbs, I don’t use glucose for energy, I produce and use ketones for energy. It’s a beautiful thing. I never knew there was another energy source available. I also make sure I keep up on electrolytes. You can’t just do carnivore without understanding the science behind it. I may also add, it may not be for everyone, but I know it is for me.