Why I feel lucky: Nobody expects to be hit... - My MSAA Community

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Why I feel lucky

anaishunter
anaishunter

Nobody expects to be hit by MS. But given the circumstances, I feel lucky in my bad luck.

My inspiration to fight this new predicament is my mother. She was diagnosed with Rheumatoid Arthritis (another autoimmune disease) at the age of 47. It was 40 years ago. There was no treatment, doctors barely knew what the disease was about. They could only pump her full of steroids and painkillers. I only remember my mother in pain or in the fog because of painkillers. She never complained, or at least not in front of us, her kids. Nothing the doctor said was ever true for my mom, "the disease will slow down as you hit 60...", "you'll have long remissions". Her disease progressed every day until her death at 80+. When effective treatments (and trials - she ended on several experimental drugs) came to market, it was too late for her, too much damage had already been done.

Take this 40 years later with MS. I feel lucky that DMT are available, that doctors know more about MS (even if still very little) than they knew about RA when my mom was diagnosed, that the impact of diet and lifecycle is now considered as an important component, and that we have online tools and communities to get informed, share experiences and relate to each other. She must have felt so lonely at the time...

So, yes, I pledge to not complain (or at least not yet). MS has not changed my life significantly and made me aware of how health and life is precious.

Sorry for the rant but somehow I had to put this down in writing.

23 Replies

Good for you, I hope you feel better for writing it down. My mother in law had RA. In the last 25 years of her life she was in agony. Never complained, but the night that she passed she felt no pain and never took a pain killer. She passed peacefully. Blessings Jimeka 🦋

❤yeah good for u aniashunter, i'm glad ur feeling better writing it down & remember it is ok to rant here! Gets the 🐒🐵Monkey off ourback (so to speak). Blessings to ya!😍🙏---🌹💜Jazz

Yours is a good reminder to keep perspective on our difficulties. Thank you.

Anaishunter this isn't a rant but a compassionate reflection- on your mother's pain and struggle and the lessons you learned from it. My mother too had RA. My sister has it now and I have MS, and we are indeed that so much more is known now than when our mother was diagnosed in the 1950s.

anaishunter
anaishunter in reply to goatgal

I still amazed by how many folks seem to have members of their family affected by autoimmune diseases. It seems that this is grossly overlooked by doctors. My doctors always kept an eye on whether I would show signs of RA because my mom had it but never talked about any other autoimmune diseases.

It sounds like you have the right attitude to deal with this disease. Being down, depressed and upset about it only makes it harder. Don't worry about "Ranting" because this is the perfect place to do just that. Sometimes we just need to get it out, get it out to people that understand what you are going through. I was grateful when I was diagnosed. It was an answer to what was wrong with me & it wasn't a malignant brain tumor. I also look at each day as a 'new adventure'. So stay positive as much as you can & on the days you can't just let us know.

agreed. I felt some *relief* in being diagnosed. At least I felt I had something specific to fight against. I still need to get over a little of anger against my family doctor who kept saying - "oh, you're just going through menopause. It explains the aches, the brain fog, the fatigue... and a long list of other minor symptoms that I read as being part of aging." What I learned: if your body tells you something is wrong, listen.

Yeah, I went through that too for several years. I was finally diagnosed on my 50th birthday. I heard it said that when you turn 50 the warranty runs out and stuff starts falling apart. Let's just say my parts didn't waste any time! Like you though I have learned to listen to my body a lot better.

well said

I love this! My Mother was SO strong as well - I always think "The Greatest Generation" (those that grew up and lived through the Depression) had SO many challenges and NEVER complained. They just continued to move forward. When I was growing up and would tell my Mom of something I was dealing with that was bothering me she would answer "Life's not fair" I was always perplexed as this (I thought) did nothing for me. But it was her ways of getting me to deal with whatever IT was and to just keep moving forward. Life will be unfair, but how you deal with unfairness is up to me.

she does have a good point

It didn't resonate with my 14 year old self, but my 53 year old self understands.

we get iT all eventually

I really like your attitude and perspective! This is the perfect place to talk about such things. May I ask how long ago you were diagnosed?

I was diagnosed in April/May 2018 after an episode of double vision in Jan. Started on Ocrevus in July. Very fortunate that it all happened as quickly as possible given all the tests needed.

It hasn't been long for you at all. I'm so glad that things fell into place for you like they did.

Yes. I'm a newbie with a ton of questions. There's so much ground to cover with MS. Being part of this community is incredibly helpful. I realize now, how so many of you have been hit so hard by it and it's inspirational to read about how strong you are all.

carolek572
carolek572CommunityAmbassador in reply to anaishunter

anaishunter,

You display strength and courage with your post. You have come to the right forum because many here are ready and wiling to listen, help, and offer encouragement to make your ‘ms’ journey a lot less lonely.

Stay Strong,

Carole :-D

I have a saying on my wa ll that reminds me daily,"Just for today I choose Joy" I try to live that,not always successful but it helps me

I hope you feel better writing it all down. This is the perfect place to express how you feel.

Leslie

I’m with you! My mother had MS and was diagnosed in 1970. Probably had it 10 years before that. Anyway, she also had no effective treatments available. I grew up watching her body decline (I also grew up thinking, if I were diagnosed with MS, I wouldn’t want to live). I feel so fortunate there are treatments now. My goal is to be as active and live as full a life as possible, especially for my two daughters. They mention their concerns about the possibility of being diagnosed with MS at some point (just like their grandmother and mother). I feel bad for them because I know too well that concern and uncertainty. I’m trying my best to be a strong role model for them and reassure them that they can face the challenges that life presents them ( whatever those challenges will be).

I understand RA is very painful. Your Mom was a courageous woman and went through a lot. At least she lived to the ripe all age. A mother of a friend of mine killed herself (she had another autoimmune disease at about the same time) when my friend was a teenager.

It's ok to rant scream if need be & beat the stuffins out of a pillow as long as you feel better.

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