Jodi Enders
Forum Replies Created
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Thank you, Doug, for sharing this information!
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I also recently received my second Pfizer vaccine, and I wish I didn’t plan to do absolutely anything the following few days. The process for both was smooth and I had side effects from neither except a pretty gnarly bruise that lasted a month after the first.
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Right now, it seems that my doctors blame all my symptoms and pain on prednisone. Therefore, it has been a sort of limitation when it comes to getting medical answers that likely are not all linked to prednisone. However, I am almost entirely off. I started at 60mg nearly a year ago and have dealt with crazy emotions, terrible sweating, weight gain, agitation, acne, face swelling, and loss of appetite.
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I have had to quit my job to handle my first MG flare mid-pandemic and remain healthy while starting a large prednisone quantity. It has been a difficult time, mostly like you, Michelle, my plans quickly and majorly altering. For almost a year, I have lived with my parents to care for me and save money. However, as great as support is, I have lost some independence. I am looking forward to moving into an apartment at the end of the month to rediscover myself alone.
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Hi Maureen! I wanted to reach out because I see you have run into some issues using our mobile version of the website. I did contact our tech person. Unfortunately, this is a limitation of the platform in which our website was created, and certain features such as “add friend,” “public message,” and “private message” are unavailable from a phone. I apologize for this inconvenience. Is there anything else that I can help you with?
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Oh, how I wish family could read minds when we need help!! Haha, thank you for sharing. I am glad you are okay. I am also pushing my limits with MG, not sure if I will ever learn! I wish you a happy holiday however you manage to enjoy it.
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Hi Thomas! I appreciate your support, as well as your continued presence within our community. I currently do not feel any more pain from my thymectomy. Unless I do physical activity, such as sifting and shoveling fossils in a creek for a few hours. I went Saturday and have been pretty sore and stiff now for two days. I have been able to avoid the over-the-counter pain relievers tho! Still experience the same weakness, but my symptoms were pretty controlled when I had my thymectomy 4 months ago. Still hoping, in the long run, it gives me more years in remission than if I went without the surgery, but we will never know, right! Sending you the best as well, and stay healthy as we transition into winter.
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I experience the same mental frustration of feeling lost in the memory of my old self and hobbies. Of course, right when we begin planning to get back to that, the world tries to knock us down some more!
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Thankfully I have recently been able to stop Pyridostigmine. I live in Florida. I was changing on average three shirts a day from the sweat, and sleeping was a nightmare!
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Our pleasure for bringing information to you, Ronald!
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Its finding balance and giving myself grace for when I may have taken too big of a risk is something I currently struggle with. Hopefully, we don’t have to put up with these limitations much longer!
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That sounds like quite the progress, Thomas! Are you currently on any maintenance treatment?
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I am curious since I had been diagnosed with MG a year ago If I notice these effects more as I begin to be more social.
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That is wonderful, Deb! Does your neurologist respond to your requests promptly?
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I also get this ab/midbody tightening/cramping every day! What treatment plan are you on if you are comfortable answering? I will make a forum on this soon.
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Hey Cyndi! Did it take you going perfectly gluten-free to notice changes?
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I will have to try talking slower to help control this! I also experience difficulty getting words out when stressed or when I’m excited and speaking a lot.
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Thanks, Tim. My one year of being diagnosed is just coming up, so I am still learning more every day myself!
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Elsa, I am so sorry for decades you have experienced denial of fatigue as an MG symptom by medical professionals. Thankfully you have been able to identify your triggers and teach yourself how to adjust. Accommodating to MG can be incredibly challenging, even when we feel we got it all together. That is why our community here will always be here to support you. I have found that my go, go friends that never stop require more patience to teach them. They may not understand as thoroughly as friends more similar to us. Still, suppose they entirely support our journeys and accommodations. In that case, I think friendship diversity can never hurt if the friendship has no adverse effect on us and our energy!
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Hello, Bill! I, too, was an extremely active individual pre-diagnosis. And the grief of what I lost was undoubtedly challenging to swallow for a while. And, of course, I still occasionally grieve. Brushing my teeth and the double vision was also my first symptoms. That is great you were able to be prescribed pyridostigmine reasonably quickly after your initial flare. How frustrating is it when they can’t schedule you soon during a flare, but MG can turn fatal if a flare is not treated promptly?
It astonishes me how much stress can impact our health physically. Your optimism through these hardships is fantastic. Never lose your spark. I would advise you to take things one day at a time and accommodate as much as possible, but I see you are already doing that! Congratulations on the home and making a step towards easier management of your illnesses. I hope you can stay positive amidst all of life’s unexpected and unavoidable changes.
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Hi, Elsa! I agree; our definition of living is ever-changing with the seasons and trials of life. How I view and mentally accept my new thymectomy scar would have been much more complicated four years ago if I was your age. You are incredibly brave for deciding to prioritize your health over popular society beauty standards. Confidence is easy said than done. Like you, I avoided researching, learning, and attending support groups the first almost year of my MG diagnosis. Even taking that step of accepting the wonders of therapy is something significant to celebrate! It’s okay to view MG as something that has complicated your life. I admire that you embrace living in harmony with MG, letting it define you, but it has not stopped you from showing up every day!
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Hello Craig! I am currently one-day post thymectomy, so it is nice to connect with others in this community. I agree that good days need to be embraced, celebrated, and not wasted. Have you ever tried dicer for the veggies they don’t sell pre-cut? Although my hands get weak and I have to alternate, it chops them in seconds. I love that meal prep can ensure proper nutrients when we don’t have the energy or strength for complex recipes. Like yourself, I love freezing meals with beans as they provide protein. I do not always have the power to clean after, so I will fill the dishes with water in the sink. This way, the food easily comes off a little bit later when I feel up to it.