Another secret, without a doubt I share way too much.Another secret, without a doubt I share way too much. I think “YOU” may have this secret as well. We all are not bulletproof, we are disabled, chronically actually with pretty much no hope of ever being cured. Tragic but very true. We Have Relapsing-Remitting ms (RRms) and no matter how much money we spend, who tells us we can be the first cured, we have RRms wether we like it or not. Most likely dislike it though after twenty years it is more of an annoying inconvenience than anything else. One day your goal might be to say the same thing one morning. It has been rather painful and I have panicked the ambos (paramedics) two or three times but it is all innocent fun (stupidity). She who must be obeyed has never had a late night drug overdose race to the emergency room, so it is most likely just me, and I will admit that. Things will happen to “YOU” and I can not say they will all be present, but they all can be handled. I say that having several trigeminal neuralgia operations on my face, and innumerable bowel incidents. That is why I will always say wear your protective underwear. Have the first incident and “YOU” to will know the value of wearing depends. Actually ladies it might be easier for “YOU all to understand. “YOU” are mostly not as slow as we men in these issues.
Take your Disease Modifying Therapy (DMT( it will make you feel that “YOU are doing something against RRms, not just being a hapless victim. It will not cure “YOU”, mine has not cured me yet and I have taken it religiously since the beginning, I think I may have missed three doses and that is because of time errors. If “YOU” fly as much as I have sometimes dates and times do get a little mixed up, but no doses missed intentionally. Never ever, that would be against the rules and I am a big fan of my rules. They give me a form of stability in an ever changing illness. I highly recommend that “YOU” make some for yourself, as silly as it may sound. Medicine every day at 5.55am and pm. Not 6, 5.55. When I did Beta 1b everything was always laid out in a particular way left to right. Again silly, but my friend a coping mechanism. Something to be sure of and familiar with. Lots of little things add up to twenty years of coping. Something that I never thought I could do. I never thought that I could self inject, but with a lot of help I actually learned how to. “YOU” will be amazed what “YOU actually can do. This may seem totally overwhelm ing at first, and at first it maybe is a little. Okay, a lot, but slowly “YOU” can get the hang of this RRms thing. “YOU” can roll withe punches that it throws. Shrug your shoulders and say I can I will do that, and if “YOU” can not just ahh well maybe next time. Funny thing at the gym a few moths back I said my calves were far to skinny so I started increasing the weight. Last week this guy said you can actually lift that much weight, wow. It felt good and now I have calves, no thighs but calves. This is a disabling illness, but give your self a goal and work towards it, when “YOU” get to it exceed it. Push yourself, make your life with living and maybe a guiding light for that person “YOU” have never met following behind “YOU”
Tell her that this is a doable disease, show her the ways to cope with it, make this you RRms life worthwhile and help her to do the same. Do not be that person sitting in a dark corner that everybody pities. Be strong there in no need not to
Royce
It is only Relapsing Remitting ms, no biggie
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RoyceNewton
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Yep, I agree. It's been 20+ for me too. I agree, take the DMT's while you can, it can't hurt?, you get used to the needles, oh that's right no needles if you choose,... and if there is any chance it will help.... note the word help. You pay a lot of money for that chance. Yeah, the stuff you go thru with M.S. is so much "fun", I'd definitely NOT do it again, if I had the chance. And your right, once you've got it, you've got it! And won't get rid of it unless man understands it first. You can live with it. The alternate is not an option. There's way too much to see and do yet in the little time we get in life. Once you do your best to try and ignore that which you know is M.S., the better. Yeah, that's like the other thing that didn't work last...., I got over it after???? Didn't matter.
I'm lucky, because although I'm relapse free for 5+ years now, I still have so much of the good stuff which never goes away. So, I guess the benefit of that is, no new surprises! It may get worse, but if?, I can make it better?? Yeah!!!
I can't imagine much more that I didn't already have, at least as a relapse, now gone. So, I agree, do what you can....the DMT's while you can, but everyone CAN focus on what they put in their mouth. I don't mean oh, today, I opted for the salad at Panera instead of that Big Mac & Fries and Micky D's. There has always been lots on nutrition, but it has only been up until recently that we actually are beginning to realize how much our food, can affect auto-immune diseases. We are on an upward climb to greater and greater problems in these areas, while it was not that long ago in the existence of mankind, that these diseases either did not exist or were far and few between. Is it the chemicals? Or the altered genetics to also turn the plants making their own insecticide or herbicide? Or simply, that we now eat things we really aren't supposed to? Those distant few parts of our planet that man has not yet learned all these bad things, these diseases don't exist! No toothbrushes, no cavities........! Medicine has confirmed this! ????
This is not just a few oddball believers in this concept.....yes, some of the best doctors, neurologists, researchers, scientists... are beginning to sound off about this too! They know it's no easy task to undo this....But we can. Will it cure you, no, but if it can help, even just a bit? I seem to think it does, enough to make the effort!
The M.S. "gifts" you receive, just try and ignore them! Or deal with them if you must! What else are you going to do?
ASK HERE on this site, and maybe someone else will have suggestions based on what worked for them.
Isn't that how medicine works, but on a very different scale, using very advanced biology, and very advanced chemistry? "Hey, I heard if you do this very technical thing to that,...this happens!....and wouldn't that help that other thing troubling your attempts to alter.....? Sorry, I didn't excel at all in those areas, even though I thought at least, I took a lot of classes in each area........yeah I always squeaked through, barely.
I'm an engineer, not a biochemist or a ....... I know nothing compared some of the people I've met working in those areas......
And no, I'd never even try and attempt to explain how this nutrition thing works, technically, and I don't know of anyone who has really had any motivation in doing all the work to do so either. It's kind of taking the wrong direction to wealth and fame.
But I'll keep on doing what I can do. Do my best to eat healthy....REAL HEALTHY,... ON A REAL BUDGET.
Sorry, I've got to really get moving on tonite's dinner:
SOUP, 7 types of small diced veggies, in chicken bone broth....$3 Aldi, sorry, $1 chicken broth.
SALAD of many, many types of Organic pre-washed lettuces, $4 Aldi, does about 8 salads, $0.50 ea.?, topping with berries in snow, berries have been about as cheap as they're ever going to be right now, but they're going up quickly. Large sliced large strawberries and blue berries atop crumbled queso fresco. EVOO
MAIN DISH: Ahi Yellowfin Tuna, 1# frozen packaged, wild caught, CO gassed to protect color?, 6 small pieces, under $1 a piece...grilled. And Fresh Asparagus 1.49/lb, Grilled with EVOO & Lemon. So how much is dinner costing the two of us???? Let's see, that's simple math, not differential equations or calculus! Where's my calculator? LOL! Really!
Really got to go.....no time to review for errors....dinner must go on!
Sounds very tasty and you are completely correct in what you say. I like Aldi, Mum shops there all the time for stuff, when I am down south, cool grocery store. Always look after yourself, first and foremost
I’m reading this almost a year after this thread started but thank you MarkUpnorth, I needed to read this today... I was diagnosed almost 5 years ago in my late 30’s in the best shape of my life (so I thought) and after 3 1/2 years on 2 different DMT’s, Gilenya and Tysabri , the side effects turned my life upside down- physically and mentally- I was a shell of who I was—and I decided to stop them. I always ate pretty well and was really into fitness a few years before MS but thanks to all my husbands constant research, I completely revamped my diet - ALL organic, no processed anything, cutting out dairy and pretty much becoming vegan except for wild caught Salmon once in a while and I’ve been doing so well.. my past 2 MRI’s show no new lesions and ones I had are quiet, gone?? I’ve quit or decreased other meds for the MS med symptoms and I’m getting back to the gym (slowly!) We relocated out west from hot, humid miserable FL and that has helped a lot too but I know completely changing my diet was the key. I know the DMT’s help so many, and depending on future MRI results I may have to go on them again, but I’m praying what I’m doing along with staying as positive, stress free and natural as I can keeps me well for as long as possible so I can be around and functioning for my Husband and little girl (and my furry babies!)
Now I still have some continuous MS issues, numb/tingling, fatigue, RLS, blurry vision, balance, etc., But none that I can’t deal with as long as I’m still mobile. (BTW never had a pronounced MS attack they say so sometimes wonder what if I never went to DR and on the DMTs you know?? That’s when the hell started— I went to Neuro for minor tingling/numbness—but MRI/spinal/bands all said “text book MS” so was put on “the big guns” right away)
The thing that got me the worst was the dark depression, flu like symptoms that never ended but that’s been gone for a while, Thank God , after the DMT’s. ( And yes, CBD/THC has been tricky but now a big help!)
I usually stay off these sites because I find I do better if I avoid thinking about it so much and reading because my mind doesn’t stop and I’ll find myself up at 2 am like I am now!! I guess I pretend I don’t have it as much as I can as I know how powerful the mind is. Anyway, sorry for the rambling on but you are one of the only people I’ve read that has mentioned how important diet and healthy living is.. like REAL diet changes! It made me feel OK again with the path I’m choosing to take dealing with this roller coaster disease and that there are others out there like me, so thank you!! 😁👍🏼
Good for you! Yep, I have lots, and lots of "m.s. gifts" I've accumulated over many years of DMT's. But I'm a fighter. I lived with the flue like symptoms, from shot to shot, for many years. I always thought it was worth it, to fight the M.S. It became just another part of life, like the balance issues, the GPS bladder, the fatigue, the fatigue, I say that one twice. Then there's the cognitive issues....Yeah, an engineer who can't even do simple math in his head anymore? Where did that go? Worst part is....yeah, I solved that problem before by ??? Can't remember. Oh I know, I'll check with...what's his name? He helped me on that one?
Yeah, life's a mess, but small steps, and never give up. Like the frog already in the beak of the big bird about to swallow it, but with the frog's hands around the bird's neck preventing it from doing so, never give up!
You do whatever you can to make it better. I did the DMT's for many years. After stopping the DMT's and finally stopping working, a few years later slipped into a "coma". Not a real coma, but brain fog so thick, it may as well have been a coma. Got out of it, by juicing fruits and veggies almost exclusively for a couple years. No, it wasn't a can't think of the word, I just noticed that as soon as I ate anything else, I slipped away. Juicing didn't do it to me. Slowly, I got better. And I put serious effort into the Wahl's Diet. I re-introduced and now still do dairy. But the main thing I got from all this, stay away from processed foods. Regarding organic, if you can, great. I tend to scrub and scrub even the dirty impossible items, like strawberries, due to cost. But what I do splurge on is my lettuces. I still get them at the cheapest place I can find, like Aldi's here. Can't wash them, and I love the mixes they have these days. All there various types of lettuces.
Having worked for, and in and out of nearly every food processing plant in Chicagoland, now I stay away from those type foods which I attribute to making me sick? Ironic? I've read so much about this.
Anyway, yes, my neurologist, the one that I hung onto. Back when still working, I had several, and more than one at a time, for years, getting the viewpoints from the best of the best. To have m.s. while you still had money! Anyway, the one I hung onto, who over the years has given me suggestions & insight into Dr. Whal's Diet, medical cannabis, and more recently, letting me know that there are other's no longer relapsing, like me! Now, if I can just return some of the many, many gifts m.s. has given me? Then I could go back to working 80 hour weeks? And loving it! I hear on the news, that the next few days are the busiest for returning gifts after the holidays. Where do I take back all the gifts m.s. has given me?
Just out of curiosity, where out west did you move to from the beer cooler refuge state (another story I told before). And what were your reasons for moving there, as opposed to elsewhere? I still dream of moving back out west someday. I will, in time.
Florida to Colorado.. it’s made a huge difference with no humidity and I love the cold! I already knew from traveling I did so much better in the drier/cold climates. We chose Colorado because it was the only place we may have family one day (Brother-in-law is engaged to girl that wants to move back here once they get married) Crazy how it all happens.. we had a great business but made the mistake of bringing in a longtime close friend who was in the industry who stabbed us in the back, stole our money and ruined the business... great friend right?! We were at a cross roads, stay and fight over it all which would have been long and drawn out and probably would have killed us from the stress or use this unexpected and devastating event to make a change for the better, focus on our happiness and health instead of the almighty $ and get me out of the humidity and heat. My Father has just passed and he and my Mom were the only reason we were in FL besides the biz, we took my mom with us and left. BEST thing we could have done! I noticed a change right away. We are back at square one having to start all over but now I have the energy to help more and I have myself back. My Husband can relax and smile again and we appreciate the little joys of life.
You could have all the $/stuff in the world but without your health you have nothing! A very long explanation but picking up and moving a family across the country is def. not easy or something a lot of people can do so needed to tell the back story. Thank you for all of the tips and knowledge, you are definitely helping others! 😁
So glad for you. We loved Colorado. The greenest desert! Now, only if there were lakes! I loved all the streams, I love to just sit by one and listen for hours! But I need a really good fishing lake. Fly fishing...okay? Done that. But I like fishing from a boat! I'm stuck in the Midwest for a bit still.... So Arizona, or Colorado? My kids live in way too hot & humid states for me. Florida being one. Thinking.........thinking.........? Both are dry? Need to visit both again! Congrats on your move!
Went to Phoenix 3? summers ago, intentionally when the temps were running 115°F everyday. Loved it. No problems coming from 90°F/90% or worse relative humidity in the Midwest. It's not the heat, it's the heat + humidity I cannot take. I'm a skeleton in a lounge chair laying in the desert sun, "But it's a Dry Heat". Lived several years in El Paso before the M.S., would stay out all day in the sun when it was well over 100°F, just had to remember to drink lots of water. Never needed a bathroom, drinking all that water. Wish I could do that here! Wouldn't need my bathroom GPS brain.
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