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I had to do all those things to make life a little easier as well… you are not alone, God bless you

I’ve had polymyositis with necrotizing myopathy for almost 7yrs now. I noticed my body changing after a car accident I was involved in. I had fevers for several days after my accident, I could barely move and the pain was unreal but I still had strength. I started chiropractic therapy right after my accident but I noticed that while I was in treatment I was getting weaker. After I was discharged from therapy, I felt somewhat better but not a 100% because I noticed I was losing weight fast and then as time went by, I started losing my strength. I went from being able to do pushups to falling on the floor and not able to get back up on my own. At the time I lived in GA with my 8 month old daughter with no family help. So eventually I had to move back home to MI because I couldn’t take care of my daughter nor myself anymore. I moved back to MI and had to see a pulmonologist because after I had my daughter I developed Interstitial Lung Disease. While I was seeing my pulmonologist, he noticed that I couldn’t rise from my chair without struggling. He asked me how long have I been feeling this way and I said since my car accident which by this time a whole yr had went by. So as he’s examining me further he asks me have I ever heard of polymyositis? And of course I never heard of such a thing lol he said I think you have it and then he referred me to a rheumatologist. I went to see him and he examined me and had me lift my arms which I couldn’t do, he made me stand up which I couldn’t do without his help, he then examined my strength which I had now in my legs, back, neck, shoulders and upper arms. So then he ordered me to have lots of blood work and a muscle biopsy. Got the results of everything, my aldolace level where high and my ck levels were in the 8000s. He then ordered a lung biopsy, got that done and that showed pneumonia so I was then put on high doses of steroids pain meds and etc. he then referred me to The university of Michigan. There I was put on chemo therapy called Rituxan that I now get twice every 6 months and also medication called Cellcept and I that 6 pills every day. I also take an antibiotic with my meds too! I was so bad that I almost died. I was very malnourished. When I was at my lowest and worst, I could barely walk, cough, breath, i had trouble shallowing, I had to lift my legs up to get out of bed, get into the cars, I couldn’t go up stairs or step up on curbs and porches, my grandparents installed porch rails and also a rail along the steps in my house to help me pull myself up. I would climb the steps in my home. I had a hard time getting in and out the shower, speech therapy to strengthen vocal cords, I would fall a lot and bust my head open, I was so weak that the wind would blow me over lol. I couldn’t do anything, I was home bound for 4 yrs. I hated leaving my house because I was afraid of falling, afraid that my baby could get kidnapped and someone run off with her and I couldn’t do anything to help her etc. it really took a mental toll on me as well as physical. It felt like one day I was normal and living my life, enjoying being a new mommy and then I woke up and couldn’t move! I felt like a prisoner in my own body and sometimes I still do! After lots of strong meds and physical therapy, I was able to obtain at least 85% of my full functions but that 10% is still a pain in my ass literally lol (I’m tired of crying so now I laugh). Now that it’s been 7 yrs since I was diagnosed. I still take meds every, chemo every 6 months and I’m doing so much better but everyday I’m in pain, and it get worse in the winter time due to cold. I still have trouble swallowing, I choke on my food and drinks sometimes, I cough due to my throat weakness..My interstitial Lung Disease has progressed since then so I’m on 2 inhalers but only as needed. It’s still hard to get out of bed sometimes but I push through it like I do when I’m in pain. Looking back at how far I’ve come has made me realize that I’m so blessed and that I can handle anything! This has only made me stronger despite my weakness and it’s made me appreciate life more. I pray that now since it’s been 2 yrs since you made this video that you’re doing so much better and still getting the proper help that you need to conquer this ugly and mean disease! This disease might be rare and aggressive, it can NOT beat us!! Sending you much ❤ and prayers to you and your family. God bless🙏🏾

I didn’t realize you had bison in Alaska

Thank you for sharing your story I have IBM and Im 52 was diagnosed 4 years ago

I've been diagnosed with myositis 2 months ago at the age of 33 which is rare as I heard from the doctors (both the disease and the age) anyway the road to recovery is longer than I've anticipated but thank you for sharing

Here in Europe we can meet sheeps crossing the road sometimes! 🐏😂

Med causes anxiety

Beautiful. ❤ Got yourself a Sub.

I was told I had ibm in 2020 it will get you down if you let it keep your head up one day at a time is how I roll

maybe get your dog away from the bear?? he sounds scared. but overall I love this cool habitat for the bear also sometimes bears get angry when they are being looked at so I would try providing a little shady home inside of the enclosure for him <3

Thank you for opening up and sharing the difficult parts. I have found for me that suffering in silence only favors the darkness and feelings of isolation. Praying for you. I would take Vitamin D supplements and take the emotional energy to keep making plans to spend time with others, even when they may not all come to pass. I enjoy listening to Southern Gospel music sometimes or hymns or worship music to remind me that God is always with me.

Thank you for sharing your experience with IBM. I to have IBM and recently spoke to another person with a different rare disease called Kennedy disease, it mimics ALS as does IBM. The call was coordinated by my Lymphedema therapist who thought it would help both of us to share our experiences since we both had similar symptoms. I found this helped me by helping someone else plus it helped him understand he was not alone in his struggles. We both found it beneficial.

Hello James and Marcie. I’m feel so privileged to have met y’all over TH-cam. You both seem so kind, patient and pleasant towards each other. And, yes, as Marcie said it’s all about the quality of life you receive that makes living with a disability more tolerable. So, Congratulations on the successful blessed purchase of your Alaskan Mobility Van!! I used to have to go to all my appointments and outings on a public disability bus which composed lots of challenges especially during the winter months. But, my sister/caregiver was blessed to be able to purchase a used disability van from a family that no longer needed theirs and it was such a game changer for us as well. I enjoyed this entire video and gave it a 👍🏽.

What brand is this new wheelchair you’re trying out? It looks like you’re enjoying the functionality of it. I have this video a 👍🏽. I hope everything turns out well for you.

Since moving to Florida from Maine my Seasonal Affective Disorder has lessoned a great deal. When I start feeling a low place coming on because of my Inclusion Body Myositis...the best remedy for me is to play my piano a bit. Play the old church standard hymns I use to play in church when I was the music director. I get lost in a good book or watch a happy movie. Especially the old classics. I also turn ON all the lights in my house. And of course there is always a prayer on my lips.

How long have you been battling IBM?

James you are a beautiful soul! I am caregiver for my husband and I love what you said today, I will share with husband. God Bless you and Merci and your family

God bless you and best of luck on your journey!

🙏🙏

🙏🙏

Prayers too you my friend 🙏🙏

Sending prayers for you my friend🙏we met a couple years ago at the wellness center pool. In Berne indiana!

What part?

“What horsepower is your motor?” “50 bison power”

Ride a cowboy

What a beautiful sight ❤ this is what life is all about or at least used to be when I was a kid over 90 years ago 😢 thanks for sharing 👍 Alaska is the only state I have not visited yet….. hopefully I will before my time end …. I am 91 😅

Nice place

Gorgeous.

I love the music as well. Soothing… not the obnoxious stuff others play. Thanks for sharing!😊

Awesome

I love that they are still wild!!

What a wonderful commute. I don't see that on the 101 in SoCal. We have a different kinda traffic jam.

Used to be millions, we just had to starve to Indians. Ain't that a pile of shit?

That's so beautiful! There's something about these bisons... so much power! Absolutely beautiful! I would love to live in Alaska! I would go tomorrow if I could....

Absolutely beautiful ❤

Beautiful.Lucky you.

Beautiful 😍 Thanks so much for sharing!!!❤

That beats rush hour on the beltway any day

genuine question, if he’s in a wheelchair and his legs don’t work how is he pressing the pedals

❤🙏❤

Have you heard of phototherapy - there is currently an amazing product available where light is used at a very specific wavelength to stimulate your body to ramp up production of its own stem cells. Within 24 hours it starts to reset between 3000 and 4000 genes to its earlier healthier state. Within 6 to 9 months the symptoms of many severe degenerative diseases can be reversed. For example, many people with MS, diabetes Etc have been able to regain their health and dependence on drugs because stem cells change to become whatever cells your body needs to repair itself. Unlike traditional stem cell therapy that is prohibitively expensive, with many uncontrollable inherent risks, and no guarantee of the outcome, this technology is very affordable, has ZERO risk (because nothing but light enters your body), and because NO CHEMICALS enters your body, there can never be any complications or conflict with any medication that you are using. In fact you will soon experience that you no longer need to use the medication that you used to. If you want to know more, contact me at hurryslow icloud. I am completely confident y we can help you regain your earlier quality of life.

Keep going bro! You can do it🙏🏿

I was diagnosed with Inclusion Body Myositis at the end of 2019. It’s been very difficult coming to terms with what this disease will eventually take away. The loss of independence is very scary for me. Thank you for sharing your experience and advice.

Thank you again for giving of yourself on this journey. I am yet to be 'properly' diagnosed, but my instincts and your history, pretty much sums up where I'm heading. I agree wholeheartedly about taking time to process, quietly, where we are and what we are grateful for. Virtual hug from Australia

❤❤❤🔥🔥🔥 New subscriber here. I truly appreciate you having the courage to share this video of your life struggles. May you and your family have many years together in love, unity, joy, peace and happiness. I gave this video a thumbs up. ❤❤❤❤❤

Working now on a diagnosis. Positive anti SRP. Negative MRI. And an EMG Wednesday. Scared. This has been a rough week. Thank you for sharing your story. This community is small and the voices matter.

Hello, Thank you for sharing your story. I wanted to ask if your condition has progressed quickly? I was diagnosed with IBM and I seem to be progressing very quickly. I started showing symptoms at 43 and recently diagnosed. I hope you are doing as well as you can.

Can you please share which type of therapy you take, and how much time it takes to cure, especially food,please share I am also suffering from Myositis

Thanks sharing your experience I am from India recently I diagnose Myositis, but unfortunately this is rare disease, in India doctors not sures about this,

Thank you 🙏 for sharing your story. This is a rare disease so it’s so valuable to hear your experience.