How Do You Cope?
Does anyone have tips or things that help you cope with living with a rare disease? What do you do to manage symptom, treatment, or other challenges?
I have myasthenia gravis. Bad enough really. It came close to killing me. The downside of the downside is that I’m seronegative, which make this rare disease even rarer. Worst of all is that all the new miracle drugs for this is not allowed for me.
No, the opposite is true. We are the rare form of a rare disease. There are now wander drugs for the majority who have the antibodies that are responsible for much of the disease, but not all. The “not all”
People are still in the dark as yo what’s going on. So the insurance people, including Medicare it seems, won’t pay for it. To use any of it is to pay big $$$.
As for treatment now, I was changed from the standard treatment to a different one, which is making things worse.
C’est la vie!
, wow, I'm so sorry to hear that it made things worse! Was the standard treatment making any kind of difference, or not so much? It's frustrating that they don't expand the focus to include some outliers. I would think that finding the edges would make all treatment options more efficacious - find the edges and work in. - Warmly, Donna (Team Member)
I a almost 81 and almost two years into my diagnosis of Myasthenia Gravis. I am blessed to have a great primary care doctor abd neurologist who work together to giv
, I am so glad you have a great medical team working with your to manage your Myasthenia Gravis. That's wonderful! And, coincidentally, we do have a sister site dedicated to MG that you are welcome to check out -- https://myasthenia-gravis.com/. Thanks for joining this conversation!
Best, Erin, Team Member., I'm glad to hear that you have comfort and confidence in your doctor. It's so important. How are you feeling? - Warmly, Donna (Team Member)
I don’t know why I’m replying because I don’t have a good answer to your question. I’m searching for ideas I haven’t tried. I have two rare diseases and I’m worn out. I’m not sick enough to require extra care, thank the Lord, but I can’t take care of my life the way I should. I have greasy walls and dirty floors, clutter and a jam packed garage that needs attention. It’s hard to consider coping when you’re in pain and under water. It’s depressing. I’m not clinically depressed, don’t get me wrong, I just feel sad about where I’m at. I’m 64 and have 6 children who are deep into their own lives. I don’t think they realize how much pain I deal with. They do love me but they see me functioning alright in their minds so off they go. I have Trigeminal Neuralgia and Charcot Marie Tooth Disease. Sorry for sounding off but I am watching here to see if I get any ideas as to how to better cope with this. I’m really trying and have been for a long time. Thanks so much for listening.
Thank you! I will toodle off to Amazon and get some. I’ve heard of it helping but then again that was from commercials! 😁
Later…, you're most welcome! I hope it works as well for you as it does for me. I take the recommended dose and on bad days I take an additional 2, and that is usually enough to tamp it down to where I can function and sleep.
I get you! I feel like you can't even trust reviews sometimes! I do a lot of research and try the things I can find wide medical research and studies to back it up. Mostly, that serves me well 😀 - Warmly, Donna (Team Member)
I have a therapist. Also, I met my boyfriend in a chronic illness forum during 2020, so it helps that he understands what it's like to have a chronic illness. Dealing with my super rare kidney disease is becoming more hopeful. Dealing with my less rare CVID is frustrating but everyone in my family helps me with my weekly treatment to make it as easy as possible.
, thank you for shairing! It seems like you have an amazing support system. It's cool that you met your boyfriend on the forum, and have built a mutually supportive relationship (I love a good love story!). - Warmly, Donna (Team Member) Lucky you!
Enjoy the romance, my dear!!
