Hello family it is Fancy. After reading a post I thought it was important to put a timely reminder into our chat room. Yes you read the title correctly when I said we are lucky to have MS. I've lived with this dreaded monster for over 20 years now and although it is harder today than it was last year I'm still going by myself and I still drive. Think about this food for thought. How many long-term chronic illnesses give you the opportunity to see your children grow to adulthood. Live to enjoy your grandchildren and plan a long life with your spouse. Your life path might be much different than mine but you still have a life path to plan out and live.
I had two sister-in-laws. One was diagnosed with pancreatic cancer at the early age of her late forties. We lost her just about a year-and-a-half after her diagnosis. I had a second sister-in-law who was diagnosed with breast cancer in her late sixties. We lost her about 2 and 1/2 years after her diagnosis. Here I am, some almost 7 years after my diagnosis who has according to my neurologist, lived with MS for over 20 years, still going strong. There are days it is hard to remember this when my body simply does not respond to my will. So this sometimes becomes my daily chant that I must realize I'm so lucky to have MS. Each and every day I read research updates greedily hoping that a cure grows closer with each and every fact they find out about MS.
So remember that we are lucky to have MS. It could be so much worse than it is although that seems hard to believe on some days. Let this become your motto and your chant on those days when things do not work as they should! I'm lucky to have MS, I'm lucky to have MS, I'm lucky to have MS! I'm luckier still to belong to this awesome family who offer such positive support and understanding when we need it the most! Thanks gang you all are awesome and I don't say it often enough! Fancy.🤗🤣👍💕
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Fancy1959
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Hello Fancy, you’re so right. When I was diagnosed I cried uncontrollably and I asked why me. Than a voice (only I could hear) said why not you. This is not a life sentence, you just have to change your life.
I think GOD gave me this disease to make me slow down. I was working a very stressful job (firefighter), married with children, and only thinking about myself, needs and wants. I got up to 250lbs, drinking almost every day and I knew I was living dangerously. I’m lucky to have MS because I truly don’t think my life wasn’t going to be a good life.
I’m down to 180lbs, eating relatively healthy, working out often and no other serious health problems. Since I retired there have been apx. 5 men around my age that have passed away. You’re right “We are lucky to have MS” but that’s just MY thinking.
Hi Fancy1959 days like today! Nope I hate it! I'm so tired my brain hurts to think! And I feel that someone dumped a truck of concrete on me! But it's expected!
So I deal with it! Because it's part of the way MS plays it's game!
I could be worse, sure! I have been worse than today! Am I lucky to have this? Well I would never have met all of you! 🤗💕
Very Precious Fancy, I guess you are right, it could be worse! & yep we are very Blessed to have met eachother, family-here w/ all the awesome support, encouragement & even laughs! So, Yes we're very Fortunate💗❤💐🙏👍😀Love Ya!---Jazzy🌹💜
Every day I think about how much worse it could have been than MS and what the diagnosis + treatment helped with: no more brain fog, less fatigue, wake up call to take care of my body, stronger friendships and many more. And as a result, I am very grateful for it all.
Thank you so much for those words of wisdom, Fancy, and reminding me (us) to keep things in perspective. I remember being in the MRI machine when the diagnosis was just a suspicion....I had tears streaming down my face as I kept thinking MS, MS. Then I felt a tangible hand on my shoulder and suddenly began thinking My Savior. Oh, that didn't immediately make me accept this disease. But I know that I will be OK, and have grown and had a changed mindset since meeting you all! Thank you!
I really like the post and it also gets the brain thinking. I can relate to most of the replies. I have also changed the way I live. I quit smoking right after my diagnosis. I hardly drink anymore. Not like I was a fish. But. My weight at my heaviest was 260. I weighed myself yesterday and I weighed 188. Did I try to lose this much weight? No. I wanted to stay around 220. Guess I just gotta take it as it comes.
Hello everyone. I just got reading a ton of great responses and I wanted to say thank you all for your replies. Some days it is so difficult, like Jess it can be hard and I don't always feel very lucky but I have to remind myself I am. It could be so much worse. I remember the day I got diagnosed the old surgeon who first voiced his opinion that in his years of experience at this point although he wasn't a neurologist he was fairly certain that I had MS. And then he went on to say that at this point I had better pray I had MS since I had a very large lesion on my spine at my C3 vertebrae because otherwise I was fairly doomed cause he felt the lesion was inoperable at the position it was. As many of you have stated the first thing I did was burst into tears. And this felt like a death sentence at the time and I thought for sure my life was over. Now flip the calendar over some 8 + years and guess what my life is not over. It's true it is different but not always in a bad way. Like so many of you have stated is force me to slow down my typical life that went a mile a minute twenty-four hours a day as the mother of three young Sons. Once I gradually started to slow down it felt odd but I realized life goes on in there is nothing more adaptable than the human spirit. The alternative was Unthinkable so I adapted. Giving up or quitting Is not a word in my vocabulary so I learned to change my life and live with this monster that we all must deal with in our own way. So to one and all I say we are lucky that we have the opportunity to adapt and continue living Our Lives. This is something I'm certain my sister-in-law's would have loved the opportunity to do if they had a choice. Just more food for thought. Fancy.
Fancy1959 Thank you for the post. MS presents many challenges and forces us to change our routines, expectations, and often our dreams. But in rising to meet the challenges we have the opportunity to learn so much about ourselves; we also have the opportunity to develop qualities that make us better members of our species, compassionate, empathetic, sympathetic and tolerant.
I remember when I told my daughter about my diagnosis. When she began crying, I told her, "It's only MS." I was telling her that more because she needed to hear it, but it's the truth.
I faced a few friends and family members crying when I told them about my MS dx. But I was already over the crying myself and fully aware of how relieved and lucky I was. Relieved that I finally knew what was wrong with me and that there was something real to fight and lucky to be Dx'd so early at a time when there was better treatment. And now grateful that I have a great family and set of friends to support me. We burst laughing the other day when I tripped and fell face flat this week in front of the same friend.
Overall MS makes you grow, emotionally, spiritually and much more.
Thank you for stating this. I felt that same relief in many ways. I'd had unexplained symptoms for so many years, and thought it "was all my head." Well, turns out it was! Now I could put a name to it and treat it!
Fancy1959, I'm assuming you're my age (even though worry about the age thing getting out), I was born in 1959, so that makes me the same age as you?, even though I couldn't tell you how old that is unless this retired engineer, who also really loves the outdoors, took out his calculator? I'm going on over 20+ years of confirmed M.S. (yes I had to take out the calculator to figure that one out). The age thing, I really don't care. And, I've seen many of my friends pass from the big C, and other things that were also final. I also have a few friends who are living with such horrible stuff that will not get better, no matter what they do...Yet they keep pushing on. So, YES I feel fortunate that I have what I have, if I had to have anything at all. I can put up with it all. Yes it's a real inconvenience. I spent years contemplating sawing off my feet because of the pain. That would be real inconvenient! But as I have said since the beginning, better above ground than underground. And everyone has something. Sorry that you are also fighting the other thing you listed. We all have other things that we live with along with our M.S. My room mate in the hospital on diagnosis day had his chest split open covered only by a sheet, because they couldn't close him back up after his quadruple bypass surgery because of a massive infection he developed. Yeah, worse than what I got? He and I walked out of there eventually! Felt lucky ever since!
And Fight!!! And take enjoyment from the outdoors when you can! I still have a couple kayaks, and recumbent trikes because it takes 3 wheels again....and I walk, walk, walk. Long gone are ......., but never give up what you love! And it ain't over till it's over, so don't waste it! Enjoy it!!! What fun things are YOU going to do tomorrow?
Hey Mark it's Fancy. And yes we are of the same age even though women hate admit what age they are! LOL! You just asked me what fun things I'm going to do tomorrow. Actually tomorrow is my get ready for the severe weather and blizzard coming in over the weekend. We're supposed to go from all day rain on Saturday starting out around low 50s before lunch and wind up somewhere in the teens by late Saturday night or early Sunday morning. They're calling the event a flash freeze and I've never heard them use that term in our area before. They have cautioned everybody about how severe the black ice will be and on top of that then they're going to add on Sunday several inches of snow. Or so they say, they don't know in our area until it's on the ground if you know what I mean. The Ohio River plays havoc with our weather and changes the patterns constantly. 25 years ago today they called for a skiff of snow and we woke up to over 6 in on the ground. It snowed for over a day and a half and it ended with us having just over two foot of snow on the ground. Here in Central kentucky that is a true blizzard for us! So that's my fun day tomorrow and I suspect it's going to be even funnier over the weekend around here. Hope everyone in the chat room that is involved with this system can keep safe and dry. Fancy.
So we're some of the 4.295 million born in the U.S. that year! Internet trivia!?!? Tomorrow, they are now saying 10+ inches of the white stuff for us. That's fine, have the snow blower all gassed up and ready, and my snowshoes are out and ready! That's something we haven't done in decades! Will try. Also wanted to say, that Ohio River Valley humidity, I used to live in Evansville, IN, that's where I first learned to hate humidity! We were renting an apartment on a "lake", and from the patio, I could see the pool, but never had the energy to venture to it, as it was just so darn hot and muggy. The trip from the apartment to the car just outside our door, and you would be dripping! That's why I offered to take a transfer to the company plant in Juarez Mexico, commuting from El Paso every day. Absolutely loved it, like the 2 skeletons sitting in lounge chairs, one saying to the other, yeah, but it's a dry heat! So tomorrow, snowshoeing! Okay, shoveling, then snowshoeing! 2 weeks ago, we were 45 miles south of Paducah (the closest town to get a replacement tire) after a blow-out, on the Sunday before new years, driving back from Florida. Want to know scary? Try driving on a temporary with your flashers on, not exceeding 50 mph, when traffic is doing 80! At least the weather was perfect!
MarkUpnorth We are born the same year. Yes, hitting a hard number this year but it's getting me closer to retirement!
I just said the other day to someone that MS doesn't scare me anymore. I have learned to live with it. Without me MS diagnosis I never would have discovered my button art that has given me joy and made me feel I wasn't worthless anymore. Without that diagnosis I never would have met all you wonderful, uplifting people! I give thanks for that!
As I just replied to Fancy, we were just a few of 4.295 million born that year in the U.S.!
Amazing what a few keystrokes can do for you these days on the internet. And look at everything you learned with M.S., like the 5th sense in locating the nearest bathroom, how to climb a ladder without the use of your legs.... All that great stuff!
Yeah, don't ask me to try and repeat that stunt! To this day I can't believe I did that! Running our own businesses, I was kind of jack of all trades as most small business owners have to be, though each business was very very specialized in what they did and did it well. But I was the inspector, estimator, salesperson, management....for the one company. I had crews to actually do the physical work, just had to direct them and supply them with everything they needed to get the jobs done. Yes I had supervisors.... As our company's only licensed inspector at the time, I could not delegate that function. And back then, I pushed myself beyond that of any sane or reasonable person to keep things going. I still remember barely being able to walk during that relapse. I had to go to a few customers I had worked for regularly, and could not delay them, as they had to keep their businesses running too. These two were located in areas above the production floors which required access via ladder. These mechanical rooms located out of the way so to speak. So although I could still walk, sort of, I really could not put weight on my spaghetti legs. I was not using a cane, or crutches, just walls, furniture, machines...whatever was available. Yes I was questioned..., no I wasn't drunk..., yes they knew I had M.S......AND they knew me. My arms were strong. So I essentially dragged my body up the ladders, rung by rung, while pulling myself up with my arms, making sure I did not stop without my "bologna legs" not being on one. One was better than the other so I pushed myself. Although had I stopped to stand, I surely would have fallen off. I was still young, (yeah not that young), strong willed, and stupid. Just dedicated to keeping things going with the companies which supported me and all my employees and their families. I know my employees saw the dedication, as nearly every one of them stayed with us till they retired, or I finally had to. Don't try that at home! LOL!
My legs are good again, but I still don't do ladders anymore, a lack of balance thing is now the issue. So no more climbing ladders without hands even though the legs are working again, and even then, OMG the fear of falling since balance has been gone for years. I did it last year, once. Like I've tuned 2 again. Hxxx, a 2 year old would be great on ladders and the roof! Me, not so much! Know your limitations! It's just sad to give things up!
Mark, it is fancy and believe me we all understand how it's hard to watch our bodies change and simply not respond to commands we give them! Some days I have to chant to myself it could be worse it could be worse it could be worse before I understand that I'm still lucky to have this monster and it could be much worse if I had a different monster trying to rip my body apart! Remember we are stronger together! Keep your chin up and be thankful that you still have what you do and fight to keep it! Fancy.
7x I tried to reply to you on my phone. Every time I was disconnected...before it would post?
Never give up the fight against M.S.! Never! M.S. is not what we are, it's what we live with.
Hopefully someday I will meet you. I love my wife, and would never leave her. But, I have for the first time in my live, found comfort in others fighting my battle like me, which I have to say, I am winning, and think others like me can!
I'd love to hug you like my other friends, like my gay couple old neighbors who we just took a trip to the Dominican Republic with, and loved it! That's where I lost my dependency on my cane! Good company..., great things happen! Hope you could join us! Love the outdoors!!!
Great post Fancy1959 ! Its been 20 years since my diagnosis and the diagnosing neuro said I'd likely had it for at least 10 years prior. When he told me the diagnosis I was RELIEVED! And I actually laughed and said "Thank God!" Because of the symptoms I had then, I had convinced myself I had an inoperable terminal tumor! My imagination was working overtime because it took so long to get a diagnosis.
I was a single Mom and fretted about who would raise my young daughter and would love her as fiercely as I do. (Her father is and was irresponsible.) That fretting kept me up at night so the diagnosis of something treatable lifted a huge burden off my shoulders!
In the ensuing years, I lost multiple friends including: my best friend, (whom I had known 30 years), to a reoccurrence of breast cancer and another long time good friend to prostate cancer. Neither of these awesome friends made it to their 50th birthdays. So...I consider MS not the worst thing that could have happened to me.
And while I have my share of difficult days, I always remind myself that it could be much worse.
Just saw your reply. I can't imagine your situation. But, yes, M.S. is a F'n inconvenience that will give you many hurdles, but YOU CAN LIVE WITH IT! It's not the end of the world. The big C is.... M.S. isn't. Feel Lucky!!!
MarkUpnorth ...I’ve been living with MS successfully for 20+ years and in that time raised my daughter on my own while working full time in a demanding career. I thought my post does indicate that clearly. Maybe it doesn’t. I’m in no need of being told it’s not the end of the world or that I should feel lucky that it wasn’t a cancer diagnosis. I know that! I’ve never been a ‘woe is me’ kind of person but rather a person that is always determined to find a way around obstacles and move forward. I’m my own cheerleader always and am blessed to have a daughter and friends that push me along too.
Didn't meen to offend in any way. Just went thru the "C" scare, and after month's of do I do surgery, or chemo, or radiation....I found out, maybe we made a mistake. Never so scary with M.S. The big C, well I know too many close to me that went through that, some won, some lost, just give me M.S. any day over the big C.
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