Hello, I am so happy that you are tying to gain some attention for something that so many people suffer from, and so many have been misinformed and misjudged by others, including Doctors and the ER. I was diagnosed 4 years ago, only to realize that I have had it all my life. I understand everything you said and would love to share my story with you, and I don't need to be anonymous. I believe the people who feel comfortable stepping out front and putting a name to the face and the face to the MSK disease, the better it humanizes it. I understand those who can't do that, but then need just as much help and awareness to spread around and let the medical world, as well as the public, and sadly, enlighten and some of our friends, family and co-worker and educated the fully of MSK. Please send me any information or petition and I will sign it ASAP, and hope to get to talk to you and share more of each others stories.
I admire your courage and tenacity, and I hope you are well and look forward to hearing back from you.
From one MSK Suffer to another MSK Sufferer (It would great to say from one MSK Survivor to another), even better to say, (From one CURED MSK suffer to another CURED MSK suffer!) ...one can only hope, but you know what they say, nothing changes ....if nothing changes.
Your MSK friend
I would help you with this but I'm not the one with MSK, my daughter is and I'm not sure she is ready just yet to get active. You are right about the way doctors treat patients with MSK. We did pretty well for awhile, but with the last few really bad flares, the doc has become quite cold. Maybe because she doesn't know what to do next, I don't know. It is very heartbreaking to read stories from all of those who are in pain and when they try to get help, they are labeled as drug seekers. It is so cruel, you are right, animals are treated better. As far as my daughter goes, if I could I would gladly trade places and have MSK for her!! She has done amazing in spite of it all. She got through high school, five difficult years of college and now is an RN. I couldn't be more proud of what she has done especially given this difficult disease. Well anyway, enough of me rambling on, but if you need anything from the Mom of an MSK patient, let me know.
I definitely encourage involvement from family members. For those of us with MSK, we depend on our families more than you probably realize. It's extremely important to have someone we can turn to, a safety net that we can depend on. With the way we are constantly let down by our doctors, it helps tremendously to know that you are there and support us.
Personally, I believe that MSK is not as rare as the research suggests it is. Alot of the research is outdated, and that is one of the things I'm working on changing. I feel there are many more out there that have yet to be diagnosed, and that's why I'm trying to get as many involved as possible. There is strength in numbers; whether it be the actual patients, or concerned and supportive family members. It's going to take the involvement of us all to persuade the medical community to take a serious look at this disease and to make positive steps toward better treatment options.
I will send you a private message with a link to the petition, and I'd be happy to answer any questions you or your daughter may have.