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Knowing what you know now, what is one thing you would tell your newly diagnosed self?
What would you say if you could write a letter to yourself, the scared and newly diagnosed self? What would you tell yourself, good bad, or otherwise?
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28 Replies
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Give yourself some grace. It’s ok to slow down. You can have just as a fulfilling life but it might look a little different. Embrace the different. Become willing to pivot at any moment. Join a support group. Don’t think you can do this alone. Mental health is just as important as your physical health. Educate yourself and your loved ones. Take it one day at a time.
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Such great advice Leigh!
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Wonderfully brought to the point!
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“Dear Me: Skip the Azathioprine. It will cause you liver damage and then you’ll have to try Cellcept.”
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It definitely can be harmful to the liver — and that’s why liver function should be constantly monitored by your neurologist. I have labs done 3 times a year. So far, so good. I’m sorry it didn’t work out for you.
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Hey there! I just wanted to let you know that I sent you a private message about a volunteer opportunity for our MG Community Spotlight. I’d love for you to check it out when you have a moment!
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I take Azathioprine. I’m on 200mg/daily. I tried Cellcept but didn’t do well on it. So sorry to hear that it caused liver damage for you.
Thank you for sharing.
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Steroids are a monster. Your case will be complicated and as you plow through each possibility seeking a remission state, steroids will be there, giving you cataracts, keeping you immunosuppressed, sap your skeleton like a vampire. But, they will let you live.
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Thank you for adding the warning about steroids, Douglas. It’s definitely a double-edged sword. Seems like you’re damned if ya do and damned if ya don’t take it. At least in my case.
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Find a Neurologist who specializes in MG, Most do not. They only know what they learned in medical school and, since they don’t specialize in MG, don’t do continuing education. I was told while in the hospital that my doctor and one other were the only ones in the San Francisco area that have over 100 MG patients. Your primary care doctor probably won’t know a specialist either.
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I told myself I would’ve pushed these doctors harder. I feel the doctor’s hands are so tied so much by insurance companies. They’re not taking the time with the patient. I was told it was because of my age because I have buried my husband and my mother and my mother-in-law that things in my life, but they never went deeper but the debilitating fatigue and every symptom was just right there, five doctors missed it. The shortness of breath the fatigue and the lack of muscle strength could’ve been handled much better if I was diagnosed earlier, at least I feel it could be and you’re right finding the right neurologist who will work with you and work with your insurance company is a real plus for you. Getting an appointment is another challenge. I was very fortunate that my ophthalmologist said I explained my symptoms to a tee and he called and got me in with the neurologist the very next morning. Hoping this third type of treatment helps me. This is a journey you must take along and be the best advocate you can for yourself.
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Don’t believe everything you read because it will scare you. Everyone’s case is different. I remember reading don’t drink hot liquids or eat hot food and everyone said it’s going get really bad. It scared me so much I couldn’t function mentally for 6 months. Then I got a grip and went on with my life and none of the really bad stuff happened.
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So very true Amy! We are all different. It’s why MG is called a snowflake disease.
It’s a good thing I’m not affected my hot drinks… I need my coffee… haha
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I miss all the energy I used to have
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Take it one day at a time, do the best you can. Most of your energy will be in the morning to early afternoon so use that time to do your harder tasks. Don’t worry if you can’t accomplish everything, it will be there tomorrow.
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“It will be there tomorrow” could not have been said better! Love this advice – Jodi, Team Member
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Look for appropriate neurologic medical care, interact with other MG patients sharing experiences and benefitting from mental support, learn as much as possible about your disease and be patient with yourself. I habe to admit, though, I am still working on all of these points myself.
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Right there with you. Being patient with myself and giving myself grace are things I must remind myself of daily <3
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Be willing to share what you’re going through with others. As someone who would keep pains, aches, and ailments to myself, this was sometimes difficult. I’ve learned to turn it into a learning moment for others…especially if they’re truly interested. If I start slurring my words, I don’t want others to think I’m having a stroke! Also, just as your neurologist monitors you (I hope), monitor your neurologist. Stay in regular communication with them. Ask questions about new therapies you hear about. Don’t be afraid to ask things like, “shouldn’t I be doing this now…?”
But one of the best things (which has already been stated) is — it’s okay. It’ll be there tomorrow, or sometime later, when you feel up to it.
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Agreed. I’m a huge advocate for education. People don’t know what they don’t know. It’s not fair to be mad or upset with them for not helping or asking if they don’t know to or how to.
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I would tell myself to learn as much as you can about MG, from the very beginning after being diagnosed. Don’t think that just because you seem to be managing MG well, doesn’t necessarily mean you’re okay.
Second, keep taking your meds every day at each interval.
Third, keep a closer monitor on your health and fatigue.
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Slow down! Give yourself some grace. You can’t do what you once did. But your life isn’t over. Find ways to make it good! Have friends over but don’t cook, buy it. So you can enjoy your friends. Find a few minutes a day for a favorite hobby. Or find a new hobby. One that is doable. Know that you are not alone. And it is always possible that tomorrow will be a better day.
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I couldn’t agree more. This is a hard one for me, admittedly.
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I have always enjoyed entertaining. I had to make all the food myself and from scratch. I would make sure my house looked nice. I had to learn that it is okay to take breaks when doing your household chores or cooking. Accept these things may take a little longer to get done. Stop worrying about what others may think. Don’t apologize for a messy or dusty house. Pace yourself. Don’t try to soldier on or muscle through. Sit down and relax. Take care of yourself. This diagnosis, as mind bending as it was, is actually a wake up call for me. I have learned to relax more.
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When it comes to a messy house, I constantly have to remind myself that those who mind don’t matter, and those who matter don’t mind. I think it was a Dr. Seuss quote. I’m thankful for a network of friends that don’t mind and pitch in when they can.
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My response would be hang on. It’s gonna be a wild ride. Let your neurologist know everything about how you feel so they can adjust your treatment accordingly. MG is not a fun ride, but yet a matter of finding something that works for you. They very close attention to what your body is telling you I do not push yourself because you will not win. Learn to reduce stress in your life and just enjoy the simple things. There will be days that you may be able to achieve goals that help for, but you will have more days Where you’re just can’t accomplish much and learned to accept it. That was a very hard one for me and I spent many days crying because I was unable to do the things that I used to. You have to learn your boundaries.do
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My letter would say that with luck the MG will be managed but never cured. You will slowly decline – hopefully very slowly – in the meantime enjoy every day as best as you can. Understand that hopefully your Dr. is competent but it is very likely that the Dr. is making educated guesses as we know so little about this disease. When I feel depressed in the clinic before my IVIG I watch all the patients filing into the chairs around me who are being treated for various stages of cancer and I then feel lucky. Count your blessings!
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Thinking more about this question, I would give myself a simple 4 word advisory, “There is no cure.”
In the first months I heard autoimmune disease, and I thought surely there’s a cure, or after it sank in that the word cure is not used for MG. Well then I thought we’ll remission must be like a cure, right? It’s been 11 years and I have seen the best of the best and for whatever reason my gMG doesn’t know what remission is either. So I live for the best days when they come and believe more best days are coming.
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