Life After Dermatomyositis (Auto-Immune Disease)
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- Опубліковано 15 чер 2024
- What's up, guys? In this week's video, I wanted to talk about what my life looks like eight years after being declared 'healthy' after being diagnosed with an auto-immune disease called dermatomyositis at the age of three. In this video, I will give a short backstory and then get in to some of the biggest obstacles I have to date, some of the good things that happened because I got sick, how I developed a positive mindset, some advice for people who are not sick (regarding how to act when you come across someone with a disability), some advice for people who are sick, and lastly some advice for parents of sick children. I really hope this video can be of value to some people. I also hope that this can be a video that sick people can share with their loved ones to show how a disease or disability can impact one's life.
Timestamps:
0:00 intro
0:38 goal of this video
2:52 backstory
4:12 current obstacles
7:04 positive side effects
9:41 Developing a positive mindset
12:00 message for healthy people
13:59 message for sick people
15:00 message for parents
Connect:
www.moxamizinglife.com/
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Disclosure: There are some affiliate links in the description. This means I will get paid a small percentage if you buy something through my links. This doesn't cost you any extra and it's even a good way to "sponsor" my channel so that I can keep uploading these videos.
Contact:
moxamizinglife@gmail.com
Hope you liked this video and I really hope this can be of value to some of you😁 Timestamps are in the description of the video
Thank you. I have MCTD and I am studying each autoimmune disease to better myself. It can be overwhelming but listening to you helped. I pray you believe in God now too. Jesus IS alive & one day soon returning! God Bless you 🙏💜🙏💜🙏💜
Your Awesome . Thank you sharing .
I really enjoyed your story. You are wise beyond your years. Well said.
Thank you so much😄
Thanks so much... Hope all going on well now.. Nevertheless, for the past one or so week.. Av been thinking about that retrospective TT... Sm1 needed assistance on it.. So I thought about some clarification from u plz. Regards... Likes from tx
It's all going pretty good now, thanks 😊 I think reading this: moxamizinglife.com/how-i-study-part-3-retrospective-timetable/ could help you out. If you want some further clarification after that, it would probably be quickest if you send me a dm on Insta or just reply to this comment ofc😄
@@JustCallMeMo he he u so amusing than amazing.. Challenge accepted, link was so helpful btw. Wat was ur insta u said? Rgards
I'm glad the link helped😄 Insta is just @moxamizinglife
Thank you for your message. I woke up with pain, can’t fall back to sleep so I started to find something on UA-cam to put me back to sleep. Instead, I stumbled upon your video. I have autoimmune issues that are getting worse and my positivity has been declining this week.
Thank you for your comment😊 Sometimes staying positive is just not possible for a while, and that's okay. In my experience, it's important to feel all the feelings. There's no need for forced positivity. Feel sad, angry, and negativity. Usually after allowing myself to feel all those emotions, the positivity comes back on its own. Sometimes it doesn't, in those cases we have to allow to let the people around us to lift us up. I hope you'll feel better soon!
I was diagnosed with DM at age 3. I had nearly 50 surgeries from age 5 to 25 to remove calcinosis caused by DM and the treatment of DM. Although I had surgeries until 25, I was declared to be in remission at age 18. Besides the wreckage caused by calcinosis, I felt relatively normal physically from age 18 up until age 33 when I started to have another flare up. For the last 10 years, I have been battling on and off flare ups. Finally, I changed my diet about six months ago and feel like I'm on the path to full remission again. After 35 years of living with DM, I've found the best times/years have been when I am very strict with my diet. If I could give any advice, I would say to please try to lose as much weight as possible without being unhealthy. For me that meant cutting out all soft drinks, all processed food, all unnnatural or refined carbs, and all cheap fried or fatty meats. I still eat carbs but its just in the form of fresh fruit and veggies. I still eat meat but I just avoid fried, processed, or fatty meats. I only drink water but every now and then I will drink a protein shake as long as it doesnt have milk or dairy products. Don't get me wrong, I love milk and cheese but I just try to avoid it as much as possible because it could cause a flare up of inflammation. Every now and then I will take a tylenol or advil, but I've found that I don't need any medication as long as I stick to a strict diet. I figure if drugs and medication are extracted from plants, then I can go straight to the source and eat fresh vegetables as my treatment. Of course, everyone is different but I just wanted to share what works for me. DM is not easy to overcome so you have to be very strict with whatever you choose to do for treatment. Stay strong and stick with whatever works for you.
Hi Don. I was recently diagnosed with DM. Can I email you so you give me some help on your road to remission ?
Hi@@abeekuacquah2960. I'm not sure how to PM you here but I'll figure it out. If I can ask, what is an average day to day week to week like for you? Everyone is different so the practical things that work for me may not work for others. However, without knowing the extent of your current condition, I could still provide some basic advice that has helped me so far.
Keep in mind that Dermatomyositis essentially means skin to muscles inflammation. So, at the basic level, I would say to start adding and removing things from your life that contributes to any type of inflammation. For instance, if you're sedentary, find some type of hobby or activity you enjoy that keeps you active and moving. If you're stressed, set aside time each week or day to decompress and relax. Get in the sauna or listen to audiobooks while you sweat or do light cardio. Pay attention to what you eat and how it makes you feel. Take note and start removing foods that make you feel tired and eat more things that make you feel energetic.
Overall, I recommend taking a holistic approach to your health and be careful about relying on any one medication, remedy, or treatment for long term care because it may create secondary issues or side effects that add more problems than you already have. Don't be afraid to make adjustments and try new things. What are you doing now for treatment?
Well said