I'm the guy that about 4 months ago wrote the top 10 list and posted some of my art. Bad on me.
Well I'm BAAAAAAck
I've been reading along sometimes. One of your regulars asked me back. Out of respect for that person here I am. I've got what might seem like an odd question.
As we it here, on the eve of what may be an almost amazing "cure". Is anybody having trepidations about getting "well". I don't mean side effects, or cost, but losing another part of you. After all, most of us at defined by our MS.
I know the knee jerk reaction is of course I want to be rid of this horrible disease. But I'm asking you all to be honest and introspective. Ok now, break into groups and discuss.
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downrigger
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Love the painting Downrigger, good to see you back on line. My birthday is coming up and I keep getting asked what I would like as a present. I don't need anything, JUST my health. I want to be well, but I guess I can dream. Blessings Jimeka 🌈 🦋
downrigger I hope you are well. I actually thought your picture was a photo that you had used some type of lens to get the sky colors! Love it!
I know what you mean about losing a part of who I have been for 40 years now. Of course I would love to lose it, no question about it but there will be a strange loss, in a way. For 40 years I have periodically had to explain to people why, all of a sudden, I could not go white water rafting or hiking with them. Then time would pass and again I could spend a day, or days, running around playing with family and friends on a beach, then poof, I couldn't. Again I would have to explain. I would talk to doctors about MS (I went through my records and came up with over 30 names of doctors I have been to), go to meetings and discuss with others online about MS. My last 40 years have been a succession of good days, weeks even months interspersed with dealing with, researching, talking about MS. It has become my side kick, in a way. Now that side kick would gladly be kicked out but there will be a hole, that after a while, will be filled in with joy, hope and happiness.
downrigger, it's Fancy1959 welcoming you back. I would gladly blow this monster clear out of my body, and everyone else's, if I could. Five years ago, I was backpacking, riding horses as much as I could, and still playing competetive volleyball. I worked on the farm, mowed, landscaped, etc. Although I have met many wonderful people thanks to this monster, I want my health back without the holes and severe limitations this monster has placed upon me. The only thing the monster would leave behind would be the nightmare type memories of feeling my body slipping away from me, no longer able to do what I asked of it.
And I agree with Tutu, I also love your art work. it's simply amazing!🌈
Thanks everyone. Don't misinterpret me please, nobody want's to say goodbye more than I. Can't walk or drive. But at my age and the price I have to be cognizant of the possibility that insurance won't cover me, or that the cure won't take hold. I was in a weird depressed place last night. Thanks for answering but I really had no business asking. On the MS plus side... I taught myself how to draw. I 'd trade that in a heartbeat.
No need to apologize for having a 'down' time downrigger . We all have those times or days... and that's why we're hear. To share, to encourage, to commiserate, to listen and to be heard. 💕
I hear you downrigger I too get in thoses places . I read the other day about a new treatment to fix the mylin , should be out in 5 years...promises , promises.
Of course I can't imagine not wanting to be rid of MS. I have learned much about myself and life by having this disease and have learned to appreciate life more. I'd want to keep those things as I shed the limitations of MS.
Your question reminds me of the story by Oliver Sacks, To See and Not See. As I recall a 55 yr man regains sight after life long blindness and is distressed by the ability to now see 👀
Okay, just to be different, I am not quite sure I care either way. If u asked me when my face screamed and I did Beta the answer would have been YES without a doubt. Though after 10+years I might be lost without it. Ten is no problem, half my face is numb & and I have to be real careful not to dribble or drool to much, but a "cure", I would really have to think hard about that one. It would give my mother piece of mind, but for me maybe when it starts to hurt again.
After 30+ years, ABSOLUTELY I'd take a cure... That said, I do not want to be first in line... I'm happy to be patient and see how it goes with those who take the cure. I jumped to get on Betaseron when I was first diagnosed... It was the only med available upon diagnosis, and I waited in a lottery to be picked to get it. That said, I tolerated open sores at shot spots for 8+ years until one required surgery (still rocking a railroad track on my right thigh)...
I can be patient. I can let others work out the bugz... Once that is accomplished, I'd be more ready recognizing that I would mourn loosing the MonSter who has been my constant companion for all these years... YES, it would be one more loss, but I'm a tough old broad!!! I'd manage that loss too as I've managed seemingly insurmountable challenges my entire life...
downrigger Thank you for sharing your art. And for asking an interesting question. My own journey with MS is like everyone else's: uniquely mine. My process to coming to terms with it has taken a while; what follows represents who/where I am now. Though MS, like the years I have lived, is a part of me, it does not define me. At this point, I have accepted it and accommodated to it as and when I must. Although I have an exercise routine to maintain strength and flexibilty, and to improve balance, and I work to maintain my cognitive processes, at 77 I have little interest in DMTs, and even less in a cure. All DMTs come with side effects for some people, and a cure at 77 would not restore me to who I was at 35, or 50, or even 65. I pace myself, know my strengths and weaknesses; know that yoga, tai chi, and acupuncture relieve any stress I feel; savor each day as the gift it is (right now, as I look out the window, I see a cloud caught by the newly leafed branches of my neighbors' trees), and live each day attempting to be the best person I can be. To me, MS means multiple strategies, many strengths.
Welcome back! Love your art! To answer your question, yes I want my old life back. I would still come here and visit with my new friends. But I'm only nine months into this journey and missing my prior life. I miss having energy to be active. I miss driving a car. I even missed being able to clean my house thoroughly. 😊🦋🌈🦋🎊🌸. Lynn's
downrigger such a good question! I wonder what my answer would really be.
Only being dx for about 2 years now and knowing all the problems I have had for years has been MS all along, I wonder if I would say good-bye to this "issue". Initially I'd say yes, but not knowing any different than what has been going on??? As I said before...GOOD QUESTION!
Before I forget (and I do that too much-hahaha) I LOVE YOUR ARTWORK!
downrigger First and foremost, you have an amazing talent! Thank you for sharing! I just saw this post for the first time. I took a long break also!
As per your question. I think we have all learn the this new drug is no cure. An amazing thing for RRMS, That much is true, Knock it back to almost remission would be amazing! My issue is a have lived with MS for well over a decade without knowing. I have several spinal cord injuries and well controlled diabetes. My Drs always said it was age and those things were catching up with me. No one saw the lesions on my MRIs or paid any attention. My specialist is pissed off, because he looks at my old MRIs and and sees everyone of them on my cervical and thoracic spine. So all that being said. I have progressed to SPMS or PPMS. Not one of my Drs will actually pin it down. SO this new O drug. I can never remember or spell the name. This drug will only slow my progression.
I DO absolutely do not let my MS define me. As bad as my life has got, being on disability. Using a cane, sometimes a walker. I can not ride in the car for more than a few minutes. The list goes on. Chronic pain that often even being on the strongest narcotic on the market out side of hospital injection leaves me in tears. Anyway, I would love a cure! I would sell my house to buy it! Hell, I would sell a kidney if I could, and I am a diabetic and kinda need both of them.
Hope that answers your question. It is one of the best I have ever heard! I would love to support my family, to work, to attend family parties and to go to the lake house again!
I understand your reply as I am now confined to a wheelchair. I don't drive and I was someone that loved to drive. A vacation to me was the drive not the destination. Being dependent on my wife just feels wrong to me. I hate it. She is extremely good at it and I am very grateful for her and all she does, but dog gone it, I wish I could do it all myself.
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