Author Topic: a story of living with MS. Taming the beast  (Read 1977 times)

ACyclist

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a story of living with MS. Taming the beast
« on: November 12, 2017, 09:44:35 AM »
Just want to share my success story on fighting MS.

In March of 2004 I had a bunch of strange body symptoms.  Numbness, weakness and fatigue.  I ignored it.  Being an athlete, I figured it was due to overtraining or possible a back out of adjustment.  Wrong.  I was so wrong. These little symptoms turned into a full blown attack.  I went from being a super strong gal to someone who couldn't walk up stairs easily, couldn't run, couldn't do a squat without falling over, couldn't cut my own steak without assistance from my amazing husband.

After a battery of tests it was confirmed.  Multiple Sclerosis.  I felt betrayed.  Betrayed by my own body.  The body I had spent massive amount of time on to be athletic and strong was failing me.  I was in a dark place.  Despite have a great support system, I was so depressed.  I couldn't even ride my bike.  What kind of person could I be without having that sports outlet?  I felt tainted and ruined.  Suicide entered my mind once or twice.  Thoughts are like a highway.  Every now and then a YUGO drives by. 

Being a fighter, I did just that.  I changed everything about my life.  I cleaned up my diet. Then, I began to re-build myself.  I didn't know who I would rebuild back to, but I was determined. The massive reality check made me set different goals.  I wasn't sure if I would ever be able to race again, but I needed to get back on the bike.  I went to PT.  I did gym work on my own. My goal was in sight.  It was time to ride again. 

My first few rides were not crazy mountain bike schralpyness, but instead were little jaunts and light climbs.  I was doing it again.

Now for the good news, my medical plan covered all my MS drugs and therapy with very little co-pay. I am very fortunate to have a good medical policy.  Being a busy athlete, I always invested in a better policy than most.  That was wise, but not for the reason I intended.  More good news, I regained my strength so much that I started to race again.  Even got a sponsorship from the drug company that I was using.  Now, I had become a poster girl and was paid to race.  It wasn't the kind of poster of my dreams.  My dreams would to have become a poster girl for Specialized or Santa Cruz, not Betaseron.  But still, I received a decent amount of cash to race all over the state.  I had my problems, of course.  Hot race days took me to my knees, with the healthy girls stomping me in XC.  I did mediocre considering the challenges of strength. 

Today, I race for fun.  Last year I won a Go Pro 5, a couple years back I won an enduro race series.  Prize swag stack up in our gear closet.  I still have brand new helmets that I haven't even worn yet.  I am more of a downhiller than a climber.  I climb to descend. I climb to be able to do the epic rides that you read about.  That takes training.  Lots of training.  My goal right now is to go on vacation to the Bay Area and do a ride near Mt. Ummanum.  It will be a 5000 ft. day.  Currently, I am at 3300 ft. day.  Current goal should be attainable.

My MS is in check.  I have not had a decent attack in ten years.  The last major one was the one in 2004.  Here it is, almost 2018.  Maybe I am jus lucky.  MS affects everyone differently.  The moral of my story is to never give up.  Keep fighting.  Keep striving.  Live life and have fun, however you define it.

Peace.
« Last Edit: November 12, 2017, 10:43:47 AM by ACyclist »

Sun Hat

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Re: a story of living with MS. Taming the beast
« Reply #1 on: November 12, 2017, 09:53:44 AM »
Madame, you are the very picture of resilience, I salute you! Thank  you for sharing your story!

katscratch

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Re: a story of living with MS. Taming the beast
« Reply #2 on: November 12, 2017, 10:34:05 AM »
Not luck - give yourself proper credit for your willingness to aggressively change your habits to heal yourself.

Thanks for sharing your story!

ACyclist

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Re: a story of living with MS. Taming the beast
« Reply #3 on: November 12, 2017, 10:52:23 AM »
Thank you.  I didn't mean this as a brag.  It is more about sharing and teaching.  Also, being new here, I am still in introduction zone.

We all have our physical limitations. No fight is the same for all people.  I just try harder than most of the standard population here in the USA.  So many are lazy. I hear nothing but excuses from them.  I can't.  I can't.  I have no time.  Yes, you do.  Choices. 

You all will help me with my spending habit problems.  I can offer my help in areas that I am knowledgeable with. 
The massive change in diet, made me into a chef of sorts.  I learned to cook, and to cook everything. Through failures and successes, I have accomplished a ton.  I used to eat boxed mac and a small handful of recipes.

BikeFanatic

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Re: a story of living with MS. Taming the beast
« Reply #4 on: November 12, 2017, 02:11:20 PM »
Amazing story. You may be one of a kind.
I have RA and have had several attacks, I relate it to stress. Would love to hear more about your diet, keep posting.
and It is OK to brag here, people love stories like that.

lhamo

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Re: a story of living with MS. Taming the beast
« Reply #5 on: November 12, 2017, 04:02:39 PM »
Inspiring.

I took my new (used) bike out for a little spin today.   Didn't go too far, as DH was having issues with his new (used) bike.   I only made it about 20 feet up the steep hill back up to our house before I came to a standstill, even in the lowest gear.   I will keep trying, though -- and think of you with every additional foot I am able to ascend!

I'll be 49 next week.  Figure at my age every bit of effort counts for a lot...

ACyclist

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Re: a story of living with MS. Taming the beast
« Reply #6 on: November 12, 2017, 04:48:19 PM »
Inspiring.

I took my new (used) bike out for a little spin today.   Didn't go too far, as DH was having issues with his new (used) bike.   I only made it about 20 feet up the steep hill back up to our house before I came to a standstill, even in the lowest gear.   I will keep trying, though -- and think of you with every additional foot I am able to ascend!

I'll be 49 next week.  Figure at my age every bit of effort counts for a lot...

Great job.  Yes, every bit counts.  Every foot is a foot you gained strength on. Keep at it.  Increase 10% a week, to prevent too much too fast.  Just stay with it. Pretty soon that hill will be easy.  Trust me.

We're the same age. 

kendallf

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Re: a story of living with MS. Taming the beast
« Reply #7 on: November 12, 2017, 05:26:11 PM »
Congrats on your continued work! 

I read a story recently about cycling as therapy for Parkinson's; apparently rapid cadence cycling (on tandems for many) ameliorates symptoms as much as some drugs.  I don't know if any such link has been documented for MS, but you may be benefiting from both; keep it up!

LateToTheParty

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Re: a story of living with MS. Taming the beast
« Reply #8 on: November 12, 2017, 06:42:56 PM »
Way to tame the beast. I fight my own medical demons, and look forward to future insights on the health habits that you have implemented.

ACyclist

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Re: a story of living with MS. Taming the beast
« Reply #9 on: November 12, 2017, 08:48:00 PM »
Amazing story. You may be one of a kind.
I have RA and have had several attacks, I relate it to stress. Would love to hear more about your diet, keep posting.
and It is OK to brag here, people love stories like that.

I try to eat an incredibly diverse diet.  Lots of veg and fruit.  It varies a lot.  I don't buy into the give up bread, meat and sugar thing.  I use very little sugar, but it's in my diet.  My motto is to eat cleanly about 90% of the time and enjoy my 10% cheats.  Some things I avoid like the plague, and those things are highly processed foods. Pop tarts and things of that nature are not found on our pantry.  I do use flour, which is processed, but I use it to make most of my own baked things.  I don't seem to have a problem with gluten, so I continue to eat it.  I want my hands on most of the food I eat.  If I buy something pre-made, I read those ingredients to the last one. Artificial ingredients, preservatives, colors and dyes are generally avoided. I try not to eat too much of any one thing.  Food to me is nourishment and a bit of enjoyment.  If I try to be too strict, I am miserable.  Miserable equates to stress.

Stress is something that affects me physically.  If friends are a liability, I dump them.  If family is a drain, I avoid them.  Work stress is there, but I minimize it.  They only pay me for 8 hours.  When I leave, I forget all about them. My job is one that is somewhat low pay, and that comes with less responsibility.  I used to worry about work.  I don't do that anymore.  This may seem cold, but I must protect myself from energy suckers. 

Ever hear of the spoon theory.  Well, we all have a certain amount of spoons.  I am already low on spoons, being a person with MS.  So, I can't afford to hand them out to everyone.  No one steals my spoons from me.  If I feel flush, then I may offer a spoon.  It all depends on how I feel.  If I am training hard, there may be no spoons left.  Then, it's time to retreat to my quiet home, not answer my phone, not check email, just exist.   :)

I do think exercise plays a key.  It is important to move everyday.  The body is not meant to lay idle. Some days really chill.  Some days are an all out massacre, when I am really on.  Race days need to prepped for.  I may have to steal a spoon from my husband for those days.  If I feel badly, I listen to my body.  I might call in sick to work and just watch movies, if I feel that I need it.  Listen to the body.  It will tell ya. I am way more in tune now.

https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

I get massage regularly.  It is out of pocket, and I don't give a shit.  It's about $50 s month to get tuned up.  I'm due again.  I get deep tissue work. 

I take vitamins, like D3, cause MS people are low in it.  Also, I take a multi, for insurance.  Maybe they are just kick ass placebos, but the price is low, or low in my eyes. 

This is a lot of things, and not sure what it is exactly that works.  I do it all, as long as it aint too snake oily. 

...and dance in the kitchen and sing as loud as you can.  Even if your voice makes people's gums bleed.  Happiness is the most important thing.  People have told me to stop my MTB riding so hard and even not race downhill.  Why?  I love it.  Take that away from me and I am already dead.  If I snap my neck on a jump, it was one hell of a ride.

sorry if this was long.  I am passionate about life.

ACyclist

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Re: a story of living with MS. Taming the beast
« Reply #10 on: November 12, 2017, 08:57:42 PM »
I am currently taking Techfidera.  1 Pill twice a day.  Titration symptoms were wicked.  I'm doing really well on it now.

Got off the interferons. I might check out Amgen to see if they want to sponsor me.  I have been itching to race the Trans-Cascadia enduro.  It's over $1000 entry fee for a four day race.  I want a sponsor for that one.  Spendy, oof.

Slow&Steady

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Re: a story of living with MS. Taming the beast
« Reply #11 on: November 13, 2017, 01:54:26 PM »
My husband was dx'd with MS 5 years ago (1 month after his 30th birthday), he is currently taking Techfidera and doing well on it.

Over the last 2-3 years he has transitioned away from full-time work and runs his own business now due to the physical and mental stress of his previous job exacerbating his symptoms.  One of my biggest concerns for retiring early is insurance, depending on what happens with health care I am trying to accept that I will need to work full-time for a very long time or pay alot of money to maintain health insurance.  Do you mind telling us where your health insurance is coming from (your own employment, your husband's, ACA, etc.)?

ACyclist

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Re: a story of living with MS. Taming the beast
« Reply #12 on: November 13, 2017, 02:27:30 PM »
My husband was dx'd with MS 5 years ago (1 month after his 30th birthday), he is currently taking Techfidera and doing well on it.

Over the last 2-3 years he has transitioned away from full-time work and runs his own business now due to the physical and mental stress of his previous job exacerbating his symptoms.  One of my biggest concerns for retiring early is insurance, depending on what happens with health care I am trying to accept that I will need to work full-time for a very long time or pay alot of money to maintain health insurance.  Do you mind telling us where your health insurance is coming from (your own employment, your husband's, ACA, etc.)?

My company has stellar insurance, and I have always upgraded it to the highest level that is available.  We have a plan for retirees here.  It will cost us about 1300 a month for medical only, at today's rates for open enrollment.

Also, I am on the co-pay assistance plan with Techfidera.  They absorb 100% of the co-pay that I would be required to pay. 

I was dx'd in my mid 30's.  Sorry to hear about your husband, but I am glad to hear that is doing well on the blue pills. 

orangepalm

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Re: a story of living with MS. Taming the beast
« Reply #13 on: November 14, 2017, 07:52:21 AM »
Very inspiring story!

I work with a lot of MS patients and know that it can manifest itself and affect patients in so many different ways. Being active and keeping a positive attitude is so important.

FireHiker

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Re: a story of living with MS. Taming the beast
« Reply #14 on: November 14, 2017, 09:17:50 AM »
Welcome to MMM and thank you for sharing your story! One of my favorite minimalist bloggers, Courtney Carver at Be More With Less has written openly about her personal battle with MS. She too has written about what an impact food makes on how she feels. It was really eye opening.

For me personally, I found when I started cutting out a lot of the artificial stuff and making more from scratch with less processed ingredients I was finally able to get my migraines under control. Food makes such a difference on our health, in so many ways.

acroy

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Re: a story of living with MS. Taming the beast
« Reply #15 on: November 14, 2017, 10:16:46 AM »
Badass!! Great story.
My uncle suffered a similar MS attack. He was the picture of health, then MS knocked him on his ass. He decided to fight it, and did. Diet, meds, exercise. he went from being 'you'll never walk again' to getting around just fine with mild assistance, and leads an active life.

GardenBaker

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Re: a story of living with MS. Taming the beast
« Reply #16 on: November 14, 2017, 10:36:23 AM »
Wow, you're so inspiring! I 100% believe that a person's healing and well being in regards to health is made or broken by their attitude. You have a kickass attitude!! Looking forward to continued updates from you.

Dicey

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Re: a story of living with MS. Taming the beast
« Reply #17 on: November 21, 2017, 07:15:46 PM »
Wow! We've "chatted" on other threads, but I had no idea what a fighter you are! I am thrilled for the progress you've made and hope the MS continues to submit to your will and good pharmaceuticals.3
I had a dear colleague who had MS. She ate stress and drank Diet Coke daily. Then her layabout husband died and left her even more stressed, and penniless, natch. I always sensed that she was exacerbating her MS by her crazy lifestyle. I have lost touch with her since I retired, but I hope, hope, hope she has an AHA! moment before it's too late.

tomatoprincess

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Re: a story of living with MS. Taming the beast
« Reply #18 on: November 22, 2017, 08:24:17 AM »
My husband has MS, it is nice to hear your story. He was on copaxone, now switched to interferon. The side effects has him off his feet for 2 days, but he is a fighter and positive.

We are trying to follow Dr. Wahl's diet, not sure if it's made much of a difference. Our diet is fairly good right now, I cook about 95% of the time. Trying to source grass fed beef currently...not sure if it's worth it, what's your opinion?

I think the hardiest thing for me is to walk away from thinking about MS all the time and let it take over my life. Looking forward to more posts from you.

Wayward

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Re: a story of living with MS. Taming the beast
« Reply #19 on: November 22, 2017, 10:49:32 AM »
Thank you for sharing your story!  It is truly inspirational and I wish you continued improvement and health.  I was recently at a dressage clinic and spoke to a woman with MS about horseback riding therapy (Hippotherapy) and how it has helped tremendously with her symptoms.  It might be worth checking out!

https://multiplesclerosisnewstoday.com/2017/03/07/review-of-16-studies-says-horseback-riding-helps-those-with-multiple-sclerosis/
https://www.nationalmssociety.org/About-the-Society/News/Study-Shows-Therapeutic-Horseback-Riding-(Hippothe
 

ACyclist

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Re: a story of living with MS. Taming the beast
« Reply #20 on: November 22, 2017, 11:32:17 AM »
My husband has MS, it is nice to hear your story. He was on copaxone, now switched to interferon. The side effects has him off his feet for 2 days, but he is a fighter and positive.

We are trying to follow Dr. Wahl's diet, not sure if it's made much of a difference. Our diet is fairly good right now, I cook about 95% of the time. Trying to source grass fed beef currently...not sure if it's worth it, what's your opinion?

I think the hardiest thing for me is to walk away from thinking about MS all the time and let it take over my life. Looking forward to more posts from you.

I think it is worth it, if you can easily afford it.  As long as having specific diet is not stressful for your family.  For us, we do some but not all.  This is due to costs making it obscene.  The thing with diets is that as long as it is healthy, you have nothing to lose.  If it works, even better.  If it doesn't, you have lost nothing.  This is why I am persnickety about certain things in my diet.  I have much to lose by letting my guard down too much.  I can cheat, but I have to keep it sane.

Personally, I think if you eat well 90% of the time, the rest is just maintenance.  Exercise is a vital key to this.  You have to move and move often.  No truer words were ever spoken.  "Use it or lose it."

Today, I am taking personal time to pursue my goals.  I need to take the afternoon to train and ride my bike.  It is important to take time for yourself. 

katscratch

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Re: a story of living with MS. Taming the beast
« Reply #21 on: November 22, 2017, 11:43:31 AM »
I too think it's worth the cost. I don't have a source of wild game- that would be my first choice. But even my traditionally trained internal medicine doc who recommends the OmniHeart/DASH type of diets for most 'typical' patients believes that grass fed farm cows are a different type of meat entirely than CAFO cows.

Dicey

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Re: a story of living with MS. Taming the beast
« Reply #22 on: November 22, 2017, 12:26:04 PM »
Thank you for sharing your story!  It is truly inspirational and I wish you continued improvement and health.  I was recently at a dressage clinic and spoke to a woman with MS about horseback riding therapy (Hippotherapy) and how it has helped tremendously with her symptoms.  It might be worth checking out!

https://multiplesclerosisnewstoday.com/2017/03/07/review-of-16-studies-says-horseback-riding-helps-those-with-multiple-sclerosis/
https://www.nationalmssociety.org/About-the-Society/News/Study-Shows-Therapeutic-Horseback-Riding-(Hippothe
I suspect that using your dollars to eat the recommended diet would be even more helpful, with the added benefit of being good for the entire household. Anything to do with horses is seldom cheap.

ACyclist

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Re: a story of living with MS. Taming the beast
« Reply #23 on: November 22, 2017, 12:36:34 PM »
I wouldn't say that I am a huge fan of horses.  It's ok, I have several sweet rides, and I believe they do me as much good as a horse ride.  Well, as long as I don't crash and break bones getting too wild.  :)