[jester]

I try to stay away from the words suffering, disability, snd disabled.

<font color=”rgba(0, 0, 0, 0)” face=”inherit”> I gess I identify with warrior </font>and fighter .

I don’t mind sharing my MG story with my friends and co-workers.

Now the depression MG and it’s treatments can cause. Now that remains s secret.

[Dev keshav]

It’s difficult to pinpoint a specific word or identity. The way I feel changes according to how I feel. There are times when I’m having a hard time and know that it’s not caused by something I have done, or can do to make it better. I try to just accept the fluidity of this illness, and wait to feel better. Sometimes I feel really sad. But mostly I could say that I’m used to life being different from day to day, from moment to moment. Used to sounds strange. Maybe acceptance is a better word. I have no problem in talking about MG. But, I don’t like it being described as a disease. Disease sounds like you caught it from someone or you can infect someone else. It’s an illness which in a way is also a disability. Identifying as a warrior is only understood by others who also have MG. Outside of our circle, understanding is rare and empathy practically not possible.

[Barry]

Patient, survivor, fighter, living with a condition, educating overs about MG, and its limits. Many (including medical practitioners) have no idea. My neurologist said I could not have any contrast media when undergoing various studies, and caused upset at me when I pointed this out. They thought I was challenging them. I just explained I would not undergo the test unless they talked with my neurologist. 2 refused and told me to leave. They then tried to bill me, but that did not turn out well for them 🙂 Therapists need to do research before treating us. It’s been a very interesting journey so far.

[Amy Cessina]

I agree many doctors don’t care about following the list of medications to be cautious about. I have used some of them but short term and I have a mild case of MG that affects vision and swallowing. I don’t tell anyone I work with about MG because I don’t want to be discriminated against. I don’t identify with MG at all. I keep it hidden because I can. I eat a soft and chopped diet no one seems to notice.

[Sally W Hardter]

because my MG symptoms have been under decent control, I try not to mention it very often. I have recently retired and medications have been working (Cellcept and Mestinon). Biggest problem is discussing MG with providers other than my neurologist. I find you need to be VERY up to date on medications that may increase your symptoms and often providers really don’t listen. They want to throw you a medication to ‘fix’ something without much thought about underlying conditions.

[BBernadette]

“But you look so good.” A common refrain that I hear. Perhaps the comment is meant as a compliment. I would describe my MG as on the milder side, controlled with immunosuppressants and monthly IVIG. There is a lack of understanding about MG among lay people, but also medical personnel. Other than my neurologist, most of my other medical providers have very little understanding of how this disease can affect me. It is hard (and sometimes lonely) to have a chronic, not easily understood illness. I don’t see myself as a “MG warrior” nor do I identify as having a disability. I view myself as an advocate in my personal journey of MG.

[George Kesterson]

I would use most days as a warrior. I have to fight most days to get up off my butt and accomplish something. Every small task is a victory of that battle. I know I need to focus on the big picture but it takes small victories to win the war. I have fought with depression for most of my adult life and with addition of gMG it makes it hard to tell which one is in control each day. Good luck to all in your war on gMG.

Remember this is a snowflake disease, therefore the word it describe me changes frequently.

[Frank]

When I was diagnosed (Nov. 2021) I knew I needed to accept my disease, but I also knew I needed to be careful not to become my disease or let it overwhelm me or become the focus of my life.

I don’t like the idea of thinking of my relationship with MG as a battle, a fight, or any other kind of conflict. For me looking ahead to a life of fighting, battling, being in conflict, or trying to overcome my incurable disease was really stressful and quite depressing. I thought viewing my disease in this way would sentence me to a lifetime of stress, and that stress would certainly exacerbate my disease and it wasn’t a way I wanted to live.

I realized that my disease was part of me just like my sense of humor, my way of thinking, or the way I view life. I’m not in battle or conflict with those, I use them to make my life more enjoyable—we’re partners in this life we share. At that point, I decided to make myasthenia gravis a life partner rather than a life enemy in this dance I call life.

Since then it’s certainly been an interesting dance. I have to admit that it leads most of the time, but now and then I get to take the lead. Sure MG is a challenging partner, but when I look at the relationships around me, they’re all challenging at times or in some ways. And just like with my other life partners sometimes I get mad at my disease, frustrated with it, and sometimes really, really sad because most of the time (all the time?) it doesn’t seem like we have the same goals for my life.

However, shifting my perspective and realizing that I’m learning a new dance with a new partner has allowed me to have a better perspective of my disease, allowed me to work with it, helped me manage my health, and given me a certain sense of control. That’s nice.

And, as I’ve gotten to know my partner and when I really pay attention to it, it lets me know when it’s time to rest, not to do too much (always!), and when I can do a little extra. I’m trying to learn to view MG as a friend, a life companion, and a dance partner as I travel through life.

This attitude which is not always easy to maintain, has made my journey with this disease a bit more palatable, and even fun sometimes. Again, I’d rather spend my life with a sometimes troublesome friend than an enemy. Thanks for asking!

[James McCay]

THE END OF MY WONDERFUL SELFLESS CHARIABLE LIFE AS I KNEW IT! I have 3 severe Neuromuscular diseases connected to the Camp Lejeune ;poisonous water, but the widespread weakness destroyed my life. I always had a very high tolerance to pain, so as bad as my widespread pain is, I think I could have some quality of life if not for the severe weakness, falls, loss of balance, frequent daily blurry vision, and very recent lapses in memory. My mind and autodidactic lifelong education made my mind my most dependable organ, now that’s being affected after 18-years since my MG diagnosis. I can’t live without my mind. I’m all alone at age 57, never had parents I could trust for anything, and am about to lose my family house since 1961 because my diagnosed Dementia, Sociopath, Schizophrenia, gambling addict mother refused to get at brain CT Scan for years as much as I tried to help her. She took out an $82,000 loan on the house I’ve been paying more than my share for since 2005. She gambled every penny of that loan away in 2-days on slot machines! Then just 4-months later was forced by the state into a Nursing Home catatonic. I had no choice but to pay the $450-$550 a month interest on that loan for 10-years, but they wouldn’t speak to me because my paranoid mother put my name on NOTHING. Now the loan’s due (MIN $1,080 a month) & I’m living on $1,500 a month in SSD and can barely eat in NYC on that! So the bank keeps sending threatening letters to sell the house in a fire sale. If that happens I’m homeless- and as good as dead. The Dems in NYC want the elderly/disabled DEAD. PLEASE TRUST ME ON THIS; I’ve been researching this from every angle trying to get any help: first under Obama who drastically cut what Medicare/Medicaid pays docs in NYC MAKING ALL DECENT DOCS LEAVE NYC FOREVER. Trump created NY CONNECTS for the elderly, and NY CONNECTS CIDNY which was helpful for the disabled in NY. Then Biden made further cuts & drastically defunded NY CONNECTS making it useless. Dems seem to think all the homebound elderly/disabled deserve is help from welfare mothers with very minimal training if any. Now you can’t even get a human on the NY Medicare OR Medicaid Helplines!!! It’s all an automated system for dummies. If Kamala wins, I might as well kill myself (something I’d never think of doing unless there was no other option). I’ve been following her uselessness since she was AG OF CA. She destroyed CA and now will do that to the rest of the country. MARK MY WORDS! The Dems have always had many BILLIONAIRS AND TRILLIONAIRS backing them for favors like no taxes. So these very powerful super rich, spread the lies and pay off whomever they need to in order to get their candidate in. NO ONE WANTED KAMALA INCLUDING ALL DEMS. But when Biden was forced out they had no one else who could beat Trump. SO they transformed Kamala into a mini Trump of all things. I have nothing I’m physically able to do most days but follow this nonsense from every angle. Believe me, if you are thinking of voting for Kamala, please don’t vote! YOU HAVE NO IDEA WHAT YOU ARE DOING (or what she is doing as well), OR HOW BADLY SHE’LL DESTROY OUR COUNTRY EVEN MORE THAN SHE ALREADY HAS FOR 3 1/2 YEARS AS VP & BORDER CZAR (STOP WITH THE SYMANTICS; she was put in charge of figuring out how to stop the influx of illegals into the USA and did nothing!!), but she wanted everyone to come in illegally because those were votes for Democrats (all the Dems care about!). She will take opioids away from every Chronic Intractable Pain patient, which means the very lowest people with addiction (over age 50 like myself) will be pushed to commit suicide! Others will do illegal drugs and die from Fentanyl overdoses. The Dems can’t figure out any way to stop tons of cheap FENTANYL from coming in through THEIR ILLEGAL BORDERS, so they take it out on LEGAL USERS who need legal prescription drugs to live which is insane, but a fact nonetheless.