Active 3 months, 1 week ago Jerry Williams

@jerrywilliams

Member since January 13, 2019

Total Reads: 2,647
Total Posts: 4
In 2022, MSU delivered projects that significantly impacted the Myositis community, work made possible by our donors and sponsors. From the publication of our seminal paper on pain in Myositis in Rheumatology, our FDA Listening Session on Adult Dermatomyositis, to our record-giving year of almost $150k in myositis patient financial assistance […] View
  • @lizzysawrus This is an amazing article! It’s interesting thinking about rewatching things like Queer Eye, and other shows, with an entirely different perspective. Disability aids are tough to “accept” when we are on the younger side. It took me a long time to be okay with being seen using a rollator or walker, scooter, and my trusty cane. Vanity…[Read more]

  • My name is Roberto, I’m an Italian 40-year-old who lives in Rome.

    First of all, sorry for my English, I’ll try my best.

    I was diagnosed with dermatomyositis (DM) in April 2015, and at the time I had so much […]

    • @roberto79 Thank you for sharing your experience with the mental health side of life with myositis. It is difficult keeping a positive attitude, even on the best days. And getting others to understand what we go through each day, just trying to live a “normal” life seems impossible at times. I hope your flare subsides and you start feeling better very soon. I am so glad you found MSU!

    • thank you Roberto for sharing this; i hope you do find time to be “selfish” and do things for yourself: things that make it bareable to wake up every day with this disease. And trying to present “normal” to even those closest to me is frustrating. Because then they start thinking everything is fine. and we that live with this everyday all know that, it is not. so be kind to yourself and allow yourself to hav those super hard days…and frankly, allow others to see that.

  • I know that I am not the only one that is going through this but at times it sure seems like it. I spend my days at home unless I have a doctor’s appointment or aquatic therapy. I try to stay positive but seeing e […]

    • I’m in tears reading this, especially about the kids, and not being able to be the parent you were (and liked!) before this disease so rudely took hold. I know you’ll not give up and I know you know you’re not a failure but yes those feelings still come on and having this forum and others from MSU are so helpful in letting us just express it! You’re not alone Jason.

  • Rare Disease Patient Advocates
    We thought you would like to see a fun moment from the Global Genes Patient Advocacy Summit.

    Seth Rothberg, co-founder of Our Odyssey and a rare disease advocate and motivational […]

  • At only 41-years-old, I never thought I’d be stuck in a “defective” body. A body that, thanks to Dermatomyositis, sometimes, doesn’t even allow me to walk my young daughter upstairs to tuck her in at night. […]

    • Thanks for sharing Kelly ! I think you have articulated what most of us have felt and feel dealing with these rare illnesses. Thanks for reminding us that we are not alone in our thoughts and that we are warriors!!

    • hi Kelly..thanks for sharing your struggles and experience; this diagnosis is an astonishing thing to have happen to oneself. My greatest struggle so far is the idea that myositis is, for most of us, an “invisible” disease – that is to say, that it shows no outward signs for the most part, it is not well known and even when you stand before your family, and explain some still wont get it.

      You wrote, “I have to hope that my loved ones and those around me are understanding and know I am fighting one of the hardest battles I have ever come to know.”

      Kelly, some of them…even the ones that love you the most…wont understand. This will hurt and astonish you; but you can not wait around for them to understand. You have more important things to do. Find folks that do understand, or are willing to do the work on their own to understand; because you will EXHAUST yourself trying to get them to a place that they can not or will not go; and you do not have the time or energy to make someone see or understand this disease.

      You will have that one or two..or three (if you are lucky) folks that will get it. that is all you need.

    • First-I’m so glad you shared and I hope that it helped writing this and sharing; know also that you’ve most definitely helped others ❤️
      I’ve been getting rituxan for most of about 3 years. I e tried IVIG, 4 tries and 4 bouts of meningitis so at least for some time, that option is out the window.
      I’m assuming you’ve since gotten your rituxan, I hope it went well for you!

  • hi Ryan! i love it that you encourage exercise without waiting for a Physical Therapy order / referral. exercise doesn’t require a Doctors order 😉 !

  • Jerry Williams wrote a new post 5 years ago

    Introducing “Save Me”
    Alyssa Smith wrote and sings this new song, “Save Me” about living the #MyositisLIFE.