Tuesday, May 22, 2012

The Five Worst Things I Have Done Since Being Diagnosed with MS

Marie Cooper
Writer, MS Renegade

Although I am a relatively smart person, I can admit to having done some pretty dumb things in my life. A lot of the dumbest things came after finding out I had MS. I thought if I listed the top five, it might save someone from repeating my blunders.

MISTAKE # 1:  Not immediately making long-term financial plans.

I was eight weeks into a brand-new job in 2005 when I was hospitalized with transverse myelitis, which was followed by a diagnosis of MS. I should have looked into disability right away, even if I wasn’t ready. I should have learned everything I could have about it.

Instead, I went back to work way too soon and focused on keeping my job instead of maintaining my health.

Despite worsening symptoms that were seriously compromising my mobility and function, I kept pursuing a high-stress career that I was both good at and enjoyed. I ignored the handwriting on the wall regarding my own future.

After two frantic years of working 12-hour days, being on call 24/7, determined to prove that MS would not impact my performance, my position was eliminated and I was out of work. Before finding a new job had never been a problem. But things were complicated now.  I couldn’t “pass” any more. Now I needed assistive devices, a cane or a walker or more frequently, a wheelchair, to get around. Huge red flag for hiring managers, although, of course, there is almost no way to prove that. 

Two years have passed. Realistically, I am unlikely to ever return to the work force. I am just too sick. I have finally applied for disability, now that my savings are gone and I am in dire financial straits.

MISTAKE # 2:  Not immediately looking into more accessible housing.

I adore my cozy, 1930s seashore home. It is my dream house. I bought it completely on my own, with no help from anyone, and I have been inordinately proud of it. When we moved in I pulled up ratty old carpet, painted, plastered, fixed, planted, you name it. It is a charming place, full of sunshine and color, where guests settle in and are reluctant to leave because it is so comfy.

I used to be able to blow through the house in an hour, vacuuming, dusting, mopping. While running a few loads of laundry. While setting the sprinkler out for the garden. While dragging garbage out to the garage.

I never anticipated that one day it would take monumental effort to get up the three small steps from the back door to the kitchen. I can no longer do stairs. Or clean the house. Or dig in the garden. Or paint or do any of the things I so reveled in when I bought my house. I, quite simply, cannot take care of it anymore.

If I had made plans early on to move to a smaller home or apartment, one that would be easy to clean and could accommodate my wheelchair, my life would be so much simpler. Yes, I will miss my house and mourn it forever. But the stress of trying to maintain it is sucking the life out of me. And now that the market is horrendous, I will be lucky to get any equity out of it at all.

MISTAKE # 3: Not having a frank discussion with my children about my illness in the beginning.

I have four grown children. They are good people with good hearts and I know they love me. But they are really struggling with accepting the harsh reality of how sick I am.  I have done both them and myself a disservice by not forcing us all in the beginning to sit down and talk about what MS is, what might happen and what we were going to do about it. I have always been The One In Charge, strong, bossy, doing it all. My husband died when the kids were little and I have misguidedly tried to shield them from pain ever since. By pretending I was fine, by acting as though there was nothing wrong, what I’ve done has caused even more pain.

So do whatever you have to in order to get your family on the same page and to an understanding of the potential progression of the disease. You might never get to a really bad place, but being prepared together is so important.

MISTAKE # 4: Not taking people up on their offers to help.

My amazing friends and my wonderful sister have stood by me for decades through sorrow and joy. And through MS. They were there for me from that first hospitalization. Always, always, always offering help. “What can I do?” they would ask. And what have I replied? “Oh, nothing, I’m good.” I have said this when I am up to my eyeballs in laundry, dishes and housework that was getting harder and harder for me to do.

It has taken me years to finally admit I need help. And lots of it. I am incredibly lucky that everyone is still around offering, because those offers do tend to fade as time goes on and people tire of asking when they are repeatedly turned away.

MISTAKE # 5: Not taking care of myself.

I found out I had MS. Did I start eating really wholesome food? Did I do whatever exercise plan fit my abilities? Did I take my myriad of medications regularly and carefully? Did I rest and avoid stress as much as possible? Did I make sure I got plenty of sunshine and fresh air? Did I force myself to get out and socialize so I wouldn't get depressed?

No. No, no, no, no and no.

I kept working incredibly stressful jobs and hours. I did not focus on nutrition. I swam for a while, until I broke my shoulder. But when I couldn’t swim any more, I did not look for an alternate way of staying fit. I avoided friends and stayed in my room, in my bed, with the shades drawn. Medication?!? Tuh, (I spit on the floor), I don’t need no stinkin’ medication.

That is how you spell D. E. N. I. A. L. With some stupidity and stubbornness thrown in. Yeah, really helpful coping mechanisms.

BOTTOM LINE : You don’t need to panic, but do yourself a favor and make plans. You might never need to use them, but get your safety nets in place. My denial has cost me dearly. 


For additional information and resources – including SSDI, accessible housing, talking to you children about MS – call an MS Navigator at 1-800-344-4867 or Ask an MS Navigator at MSconnection.org.

58 comments:

  1. I was diagnosed just a few short months ago. It couldn't have come at the worst time. (But really, is anytime the best time? haha). I've been out of work since Summer 2011 and have a huge concern about ever finding a real 9-5 job since I still am dealing with my optic neuritis. The only thing that gets me through the days is my family and friends - without them I know I would not have had such a positive outlook. Thank you for sharing your list :)

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    1. Dear Unknown... Please do yourself a favor and apply for disability asap. It can take years to get approval, so don't delay.

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    2. I applied in 09 after my first attack. Ive been denied 4 times. I now have a laywer and am waiting for my hearing. Its been 3 long years lol

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    3. Thank you, I really didn't know that. When I applied, I was still making too much money even as a part-timer. Apparently, you can't make more than $1,017 a month above what they will give you, which will keep me just below the poverty line. The strange thing is there seems to be a bit of a "Catch 22" in all this.If it is so difficult to get approval and I can only make a certain amount of money, then how can I survive on $1,000 a month while they make up their minds if I am qualified. It's like they want to force you to work off the books or resort to some other illegal way of surviving.

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    4. did having a lawyer help? seems so over whelming that I just do nothing:/ that and trying to convince me and everyone Im fine:)you got turned down for 3 years? mine already behind the ball then, this last year has been such a drastic change,can't imagine 3 years from now.

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    5. When I was able to work, my employer offered LTD- long term disability, but the insurance company did Underwriting, meaning they screened your health before approving you. I was denied. The monthly payment would have been my current salary for life if I was disabled. Well, 2 yrs later, the insurance company changed their policy and decided not to underwrite anymore. I would have qualified if I had waited! I am now permanently disabled and am receiving the benefits- in addition to SSDI, but I'm not getting what I COULD have gotten, which would have helped me live without my husband if anything were to happen to him. However, hindsite is always 20/20, so I guess there's only regret if you have good hindsite.

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    6. YES! I was fortunate enough to have a LTD policy. I did not apply for Social Security Disability until my LTD company required me to do so.

      I filed three times and was denied each time. The LTD then hired a law firm. They went to the hearing level where I was finally approved. I'm sorry to say but I do not remember hoe long the process took.

      I did not realize until last year how important having SSD would be. My LTD company last year so how decided that I am no longer disabled! They have cancelled my payments and the policy. I am now looking for a lawyer to appeal this decision.

      Good luck and good health!

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    7. Don't be discouraged by other people's stories of how long it takes. Three years is going to pass either way, so you might just as well get started and apply. I did everything online, along with a couple of interviews by phone and lots of snail mail. I got denied only once, so I consider myself REALLY lucky. I just kept answering all the questionnaires they sent me honestly. Don't give up...on getting disability or in your ability to survive! Stay strong, be well!

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    8. I was diagnosed directly out of college. I was lucky enough to land a part time job at a big art museum, and did keep applying for each and every full time job I could so I was able to receive benefits, but 1 1/2 years passed, my job search extended across the nation, and just my luck I get the stomach flu one night and cannot walk. My Boyfriend, now husband, carried me down 3 flights of stairs and drove me straight to the ER. I was in the hospital for 3 months before I could walk again with a cane. Shawn, my husband, and I made plans from there to move to a more temperate climate with a hospital maybe that is a school. That is what made us choose Oregon. The climate, the fresh air, and OHSU. And the sight of the mountains or if I want to hear it, the sound of the ocean.

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    9. Wow! I feel like I'm pretty much reading my own story. I also did everything you said. The only thing I did do, through the proding along from others, I did get my disability. I am only 43, (funny how when your 18...43 is old...notice now I say ONLY 43!) I just wanted to thank you for sharing! It's always good to know your not alone, especially being stuborn and strong, thinking you can do it all alone.

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    10. I guess I was really really luck, or at least my doctor knew the right words, I was accepted my first time. LTD, which I had, only paid for $$ above what SSD did to make 60% of my salary. Then of course they denied me after two years, stating I could go back to work. Had to have an attorney and a lawsuit to get a little of what they owed me. Hang in there! Like DeliriousVisions I am in Oregon and find the climate great. I moved from the south, can't even imagine what it would have like if I hadn't moved.

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    11. I went back work after a bought of Optic Nuritis and diagnosis, my Nero said I had MS for 10 years or so and didn't get diagnosed, I was in denial. I am just tired, getting old, working out made me numb, my boss is a bitch she didn't explain that to me, I am too stressed out that's why I am having a hard time. After telling my boss that I had she suggested I consider going on disability. They approved for 30 days, then I had to get a Lawyer. (MS Society refferal: http://www.ddbchicago.com, they are awesome!)We won my STD and LTD Benefits based on my full time wonderful job, as opposed to being fired because I could no longer keep up the pace or perform at the expected level (boy was that hard to admit). The disability company has made me file for Social Security, they have denied me 3 times admitting that I can no longer do my job (excutive), but I should be able to make 1,000 month. Doing what, I have no Idea. Anyway, that is how it works you need to get a Lawyer to take take care of thier Lawyers. You need to take care of you!! Be Well!!

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    12. I went back work after diagnosis, my Nero said I had MS for 10 years or so and didn't get diagnosed, I was in denial. I am just tired, getting old, working out made me numb, my boss is a bitch she didn't explain that to me, I am too stressed out that's why I am having a hard time. After telling my boss what I had she suggested I go on disability. They approved for 30 days, then I had to get a Lawyer. (MS Society refferal: http://www.ddbchicago.com, they are awesome!)We won my STD and LTD Benefits based on my full time wonderful job, as opposed to being fired because I could no longer keep up the pace or perform at the expected level (boy was that hard to admit). The disability company has made me file for Social Security, they have denied me 3 times admitting that I can no longer do my job (excutive), but I should be able to make 1,000 month. Doing what, I have no Idea. Anyway, that is how it works you need to get a Lawyer to take take care of the BS. You need to take care of you!! Be Well!!

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  2. Thank you for sharing! I was diagnosed in August of 2007 and after reading your list I can honestly say that I've made all of these mistakes. I'm young enough to turn some of it around but I need to focus on taking all of my medications. This list is gonna kick my butt in gear!

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  3. I am struggling- I to began swimming but tore the rotater cuff and stopped, started water aerobics and stopped- I have always been a strong person-the one others come to for their strength, so while keeping up appearances -i have really let myself down.
    I have gained over 60 pounds, and as it would seem i am always in bed... (trying to rest) because i don't sleep well anymore/ if at all.
    I have refused help on the really bad times in the past that now when those moment rear their ugly heads-and they always do- everyone just stays clear lol .
    I really appreciate you sharing with me... I feel so damned alone, most of the time, and angry the other part.
    It feels like i am screaming in a sound proof room-but not at them... they do not know my plight, as i have cowardly fought this alone.
    Hearing form you - got me listening, and crying (just a bit) cause i know how you felt when you didn't do these things, the pride the fear is what scares me the most-having my loved ones see me for who i have become and forgetting who i really am...

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    2. See if you can get a sleep study done. My CPAP helps, though I'm still tired all the time it has helped me a lot. I know what you mean by going it alone. I feel like I'm alone when I go through flares. You just be true to yourself, nobody else really is of concern. Those that love you, will .... those that don't just aren't worth worrying about. We have to hang tough.

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    3. if you love water, find a gym or Y that offers water arobics, it has saved my life, friends, activity, not remaining stationary is important so your bbbrain does not forget bhow it feels to walk.

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  4. Don't start writing letters to tell people how you feel about them. Tremendous FAIL on my part. Though they told me I was dyng of bone cancer, not that I had M.S. and Fibro. Ooooops!

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  5. This was very helpful to me. I was dx with MS in 2009. Later that year I was dx with NMO. theres still no real disgnoses for me, and ive had numerous attacks in the last 3 yrs. But I do these things too. I just had a baby 4 weeks ago. And ive been breaking all the ms rules. Not taking help, not napping, not eating. I should really take better care of myself and follow these tips

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  6. This is a fantastic list! We're trying to tackle the house thing right now before it becomes an emergency.

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    1. My house is past that point but we are just scraping by on one income. It is impossible to live on what we have now, one person working 40+ hours ... the clean up worries don't even matter anymore.

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  7. This was very helpful to me. I was dx with MS in 2009. Later that year I was dx with NMO. theres still no real disgnoses for me, and ive had numerous attacks in the last 3 yrs. But I do these things too. I just had a baby 4 weeks ago. And ive been breaking all the ms rules. Not taking help, not napping, not eating. I should really take better care of myself and follow these tips

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  8. Thank You so much for sharing! with ms,, our lives are so unpredictable. Dont regret a thing, just do the best with what You have And are doing now. Dont look back.....go forward, You've come along way And should be proud. Thank You so much!

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  9. Thank You so much for sharing! with ms,, our lives are so unpredictable. Dont regret a thing, just do the best with what You have And are doing now. Dont look back.....go forward, You've come along way And should be proud. Thank You so much!

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  10. I was diagnosed in March 2012 after many doctors thought my left-sided weakness was due to some compression on my spine (which they could never find in the MRI's). It took me a while after hearing the news to really think about how may life will change. I couldn't even bring myself to use the little go cart in the supermarket. PRIDE can be very painful when you use it above accepting assistance. I'm about to move to Florida and now I am fighting with looking for a job or just going on Social Security (which I will be entitled to in September based on my age). I am still fighting with admitting I am disabled and need whatever help that is offered.

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    1. before selling everything and moving to Florida, I would recommend taking an extended vacation down there. My daughter who has MS has a terrible time with heat. Make sure the weather in Florida isn't going to make your MS worse for you. best wishes to you.

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  11. I am here to say that accepting the need to stop working is the best thing I could have done. I was diagnosed in Nov. 2003 and started on Copaxone right away but within 7 months I had another attack and cut my work hours in half. In early 2007, an attack led to my exit from the workforce. I think the slower pace of my life and the lack of stress from not working as helped enormously with my quality of life. I like your reference to talking to my children. I think I need to do that. I recently told my daughter that I could watch one kid at a time. But when I got there both boys were there, ages 3 months and 4 years. So when I was trying to warm the baby bottle while the 4 year old was playing with scissors,I woke her up to help, (she works 3rd shift.) I hope she got the message!

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  12. I loved this! Thank you for sharing!!! I too need to take better care of myself. I just end up pushing myself until I crash and am almost too tired to lift my arms. I was diagnosed the August before I graduated from college (just two years ago). It took me 9 years to earn a BA in Special Education. I'm 45. I'm now working as a substitute teacher...I can plan my schedule...and I tutor after school in my home. This answers my heart's need to work with kids, but there isn't much pay. I'm considering filing for disability but don't want to "give up."

    Your blog is very encouraging that we're in the same boat. So glad to be on the ride with you!

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  13. I wish your list could become a handout when people first approach their doctor with any kind of symptom as I think it applies to more than just those of us who have MS. I found myself nodding and thinking "uh huh,uh huh" as I read though your list. Guilty on almost every count! Ok, guilty on ALL...see I am still in denial ! It's just so hard to switch gears from doing it all to not being able to do much of anything! I'm guilty of the weight gain too, big time. Of course that feeds into depression, which makes me not want to leave the house, etc. This week I made the decision to start a weight loss program. It's a road I've been on in the past, but obviously didn't make it a life style change.
    MS sucks, no doubt about it. Your list will help those newly dx'd, and will also reassure the rest of us that we're human...but not alone by any means!

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  14. i have suffered different attacks pretty much my whole life and spent a good amount of my childhood in dr offices, at hospitals and having many tests. because i was a teenager they hesitated to officially diagnose me. i was diagnosed in 1999 and started on copaxone right away. i turned out to be allergic to it. i am now on rebif. i like ANYONE (sick or not) have my good days and i have my bad days. i worked a good many years in retail working all sorts of wacky hours and standing on my feet just pushing along doing the best i could. i am also a military wife so making and keeping friends isn't easy. you may have them, but they're now in a different state. and since we're military we aren't near any family. no friends & no family + constantly working or deployed spouse = no support on a constant basis. i could sit here and boo hoo for all i have been thru, but i choose to smile and think what would my mom do? i am proud of myself for everything i have done on my own. working retail has been extremely stressful both physically and mentally. that i know now was not a good decision on my part. but i thought, hey i'm young i can handle it, not thinking hey i have ms i need to think ahead of me in the future and preserve my body for as long as i can. one job i had has really done a number on me and i'm really feeling it later. i've been told many times by different dr's since i was diagnosed so young i've been able to adapt better. and another thing that helps is i don't think about ms. it's just oh man, i can't feel my feet, ok take better caution when walking or i'll eat the ground... man my back hurts, break out the heating pad and ibuprofen. i don't immediately blame ms or dwell on it. for me i just deal with it. like i said, this has been my whole life, it's all i've ever known. i don't know what it's like to be "normal" so it's easy for me to be like eh whatever... i have weakness in my hand so i have a tool to help me open stuff, a handle thing kinda looks like a can opener. i just try to compensate the best i can. i have to try to find something positive about every situation. other wise you can get depressed in no time and then you'll wanna give up and not take care of yourself and then things will only get worse. "man my feet are numb, but at least i'm not feeling the excruciating pain anymore" knowing what i've been through, we talked with dr's and planned a baby. he is now almost 2 1/2 yrs old. i could not carry him and so he physically advanced faster. if he wanted to go where i went he had to crawl there. and in no time he was walking. it was a rough road, but i am so thankful everyday i have him. there are stormy skies ahead i'm sure. i know they are on the journey, but i'm trying my best to enjoy the scenery around me. i'm not even 30 yet, and i feel like an old lady. keep in mind, i've been dealing with this my whole life, so i may look young and whatever, but i've had this a long time. for quite some time i lost function of my left arm, i just have to tell myself, "just do the best you can". i have tried for disability twice (the last time was 10 years ago) and i was denied both times. help, i have always been a do everything myself person so if i ask for help i really need it. when i ask, no one helps. it's not cuz i've denied help in the past. i literally have no one that will help me. all i have is me, my husband and my 2 yr old. i'm not ina wheel chair, or using a cane or walker ANYMORE, but we got a chair lift for in the future. we're doing the best we can with what we've got. i wish u all a great outlook on whatever life may throw at you. have to go to bed now. past my son's bedtime already! sweet dreams everyone. :)

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  15. first of all, it's not too late to take of yourself. You obiously enjoyed swimming, find a YMCA or gym that offers water arobics or arthritis water classes. I do this 5x/week and stretch and balance 3x/week. I swear the water exercise has kept me out of a wheelchair, I am a 58f, walk with a cane in public and a walker at home. We downside to a first floor lovely apartment with 2 bdrms, laundry room, 2 baths, gas fireplace, attached garage and a patio. It's new and best of all maintence free.
    It sounds like you need to take control of yout life...google 'ampyra' it's a wonderful drug to help with your gait and free if your income is less than $85000/year. Ask your doctor about it...good luck!

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  16. Hi Mary, I totally agree with MissPat. Your amazing list may help others who, like me, think of ourselves as "invincible." I honestly feel glad ( and guilty) to say this, but I was dx's in 2004, and so far had 4 relapses. I do have an overwhelming job as a clinical therapist, working F/T, coordinating a team of 4 other therapists. I also never thought of applying for disability,for total lack of knowledge of the process, discouragement from my doctor, and feeling of denial over the possible progression of MS in my life. I don't exercise as I know I should. I did though changed my eating habits to a gluten free diet, and have a more organic lifestyle, which has been helping me.
    In the course of those 8 years, I've tried Copaxone, Gylenia, and currently am on Tysabri. It's crazy, but my body creates anti body against all of those medications, and I end up being forced to change it. And crazier yet is that everything that worsened in my body happened after some of those medication changes. In one of those crazy moments of introspection, I wonder if I could be better off without those drugs... just saying.
    Anyways, thank you for your article.

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  17. Oh do I feel fortunate now after reading all the posts. Had symptomw start in my early twenties in college...over the years, many misdiagnoses, until, at age 45 awoke one morning and vision was like looking through murky oily water. Ended up in ER, was admitted, treated for mild stroke first five days til MRI and spinal tap results revealed MS. Was working full-time at a premier DMO, plus part time evenings retail....after 90-day short-term disability, returned only to the full-time job, unable to work more than four hours. Kept asking HR when I'd be able to go on LTD, which I'd been paying the pre-tax since 1193---was told not til one year after returning to work on STD....well, with optic neuritis, was never able to perform the seven essential funtions of my credentialing job...after three FINAL warnings (?) (WTH?!), I was terminated, exactly three weeks to the day that I'd have been able to go on LTD! Yes I appealed this, and via EEOC, was merely because I was unable to do the job....I did not receive compensation, though did get unemployment benefits. Thankfully, my SSDI was approved the FIRST go through!!! When I received that first check, of four grand, I called Soc Sec to ensure it was accurrate--yes, they paid me from the date of diagnosis!!!! I live in Minnesita, and only went through Midwest Disability services, who only receive $$ AFTER it goes through. They got their $$, I got mine, with no hassle!!!! Have been working part-time receptionist at an elderly living facility, exactly eight years now! The BEST work set up ever--minimal stress, and only working every other weekend days, is perfect for this weary body.

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  18. Hindsight is twenty twenty. I too did not think I would ever be in this position. I have done all your mistakes in spades and am paying for it now. We thought our job was secure but my husband's position was eliminated. I am on disability but the check doesn't cover a months rent (I live in Los Angeles) and my husband now works part time. We don't have enough time to save the money we will need to take care of me. We live in fear.

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    1. I too made the mistake of letting a doctor tell my employer I have MS. My mom died of it . I had really bad shoulder pain and was told it was tendonitis until I had a CS-Spine MRI. No one understands how you feel not even your husband or in laws. I think that the rebif gave me the horrible insomnia . I need to find friends that understand. I also live in MS. DON'T EVER COME HERE ! This is a horrible place to be.

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  19. I was officially diagnosed just 3 weeks ago, on my 47th birthday... Personally I am curious enough to read all I can, but then after reading some stuff it scares me so much I just quit reading. This is one of those articles. I am getting ready to start Rebif, next week, and other than some lingering fatigue and a couple of other things hanging on from this recent episode. My biggest fear is the fact that the Doc and everyone warns me about the heat... I work in a power plant. I'm very good at what I do, and I want to work as long as I possibly can. I have LTD insurance in my benefit package, and I am also eligible to retire. Is taking the meds and staying active, going to be enough? I don't want to gamble with my future, but I don't want to stop living the life I have doing things with my wife and kids, riding horses, motorcycles camping etc... Am I being naive??? I know that I will have an amazing support team if I ever get to the point that I require assistance, but I'm not ready to throw in any towels and acknowledge that my life is going to change appreciably... You hear of a lot of success stories from people who have success with the meds and go on to live a pretty unaffected life. That's who I want to be. So I ask again...Am I being naive???

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    1. You may live for years with little to no symptoms. Or you could become disabled overnight. Or you might get run over by a bus. As responsible people we prepare for the worst and then live our lives to the fullest. It's so important to read as much as u can. This article proves my point. But enjoy every moment regardless of how you feel. Good luck and God bless.

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    2. You may live for years with little to no symptoms. Or you could become disabled overnight. Or you might get run over by a bus. As responsible people we prepare for the worst and then live our lives to the fullest. It's so important to read as much as u can. This article proves my point. But enjoy every moment regardless of how you feel. Good luck and God bless.

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    3. You may live for years with little to no symptoms. Or you could become disabled overnight. Or you might get run over by a bus. As responsible people we prepare for the worst and then live our lives to the fullest. It's so important to read as much as u can. This article proves my point. But enjoy every moment regardless of how you feel. Good luck and God bless.

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    4. I am overwhelmed by the touching comments to my post! I want to answer each one individually, but I don't know if I am going to be able to. However, yours has jumped out at me as someone who is newly diagnosed. I am putting on my Bossy Boots now to reply. lol

      First, don't be scared. {{hugs}} You are going to be alright one way or another. You can't control the disease but you can control how you respond to it, that is my point. So, second, keep doing everything you already do that gives your life meaning and joy. It sounds as though you already have the building blocks in place, just make sure you are proactive when you need to be, not like me who put my head in the sand until it was too late for some things.

      Even though it might be daunting, keep reading everything you an get your hands on. That is how you will figure out what paths are right for you and which are not. For example, in my case after all the reading I did, I knew that when Copaxone failed to be effective that the interferons were not a good choice for me, between the lifestyle impact and the depression issues. So I went directly to Tysabri and had four relatively good years before starting to decline.

      "Success" is relative. You may have a pretty low impact from the disease. Or you may not. But it is your approach that will make you a "success" or not. You are not being naive to want to live an unaffected life, but you must be prepared in case that is not possible. And, again, this is my point, requiring assistance and/or having your life change is NOT throwing in the towel.

      I wish you much luck!!

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    5. I was diagnosed in 1997. In 2000 we did move from a 2-story house to a 1 story as there were times I was too weak to get up or down the stairs. MS is different for everyone; you have to let your body and circumstances dictate what is right for you. In 2010, at age 45, I returned to school. I just graduated with my AA and a 4.0 gpa and am now enrolled at the University of South Florida where I will complete my Bachelor's. I had a minor relapse last fall, which was my biggest fear in returning to school ... but my husband and son really picked up the load; they drove me to/from classes and then set me up where I could work on my computer in bed, which took much less energy and effort than trying to sit at my desk. I made it, thankfully, and plan to keep going as long as I am able. Heat is a big problem for me; a cooling vest helps a lot if I have to do anything outside in the summer. But remember, heat does not affect all people with MS ... you just might be able to tolerate it. Bottom line is that only you can judge what you are or are not able to do. I have found that what I am able to do will vary; if I get overheated or don't get enough sleep, I will have more issues. You have to be willing to continually reassess yourself; one day you may not be able to make it up the stairs; but the next, you may find you and run up and down them without issue. MS is unpredictable and different for everyone; you need to focus on what is best for you in your particular situation, understanding that some changes in lifestyle may be necessary.

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    6. Keep working. You're not being naive. Find other things you like to do - enjoy that family and their support. Realize you are blessed so
      be thankful and depend on GOD, NOT YOURSELF! MS is not the end of the world; it's just a life change, however major or minor. KEEP MOVING! GOD BLESS!

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  20. I was diagnosed 9 years ago at age 17. I'm really just now getting a job that meets my needs. I'm trying to be honest that I'm different and that's ok. I have been on disability 4 years. It took 2 years and a lawyer. I am finally on the right medication. MS has affectedy life in huge ways. I tried to act like it didn't,but it does.

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  21. It is wonderful that you are putting this out there for others to learn. Not only is it good for people with MS but also to others who have family or friends with MS.

    My mother was diagnosed with MS several years ago. She had the same struggles that you describe. She too was denied her first time. I took it upon myself to write a letter and described everything that I had witnessed and submitted it. She got her disability payments.

    It's difficult for a family to figure out what to do for someone with MS. It appeared to us that she needed help but she wouldn't ask or refused when we asked. There were times I decided to just do something without asking her. If I noticed her dishes needed to be washed then I'd just do it. Afterwards she would thank me. Or we would take a dinner to her. But these small tidbits were just drops in the bucket of her needs. We finally realized she needed much more attention then we could provide. With her doctors help we were able to convince her to move into an assisted living facility. There she became much more healthy and received the 24/7 care she needed. Her life did change drastically. So, yes, if your fortunate enough to make any pre-plans, it would be good to do it sooner than later. It would give you a little more control over these decisions.

    By letting your family know these things they will feel more a part of your life and they'll know that you want them in your life.

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  22. I read all these posts and want to thank everyone who wrote, I pray for all of those suffering with MS daily. My daughter was diagnosised in 2009 at 21 years old. She was attending college for pre-engineering and was unable to continue due to the cognitive problems she had. She then switched to young childhood development and feeling it would not be something she would have insurance doing had switched again to teacher's aid. She received an associate degree last month after many struggles with memory and fatigue. I'm so proud of her, yet she has never worked. Just getting through classes was all she could manage. We also should have had her begin application for SS during that time, but since she was covered under my hubbies insurance we've let it go. She had her first rejection for disability two weeks ago and we are in the process of getting legal representation for her appeal. I totally agree with the author of this article to not wait on filing. Don't know if she will ever work and so that makes it harder because she has no work credits. (we were told in this situation they would use my husband's SS records). I worry so much that when she turns 26 we won't be able to afford her Rebif. She has been in remmission but the damage to her memory and the fatigue make everyday life difficult. It was so helpful reading everyones comments here.

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  23. What a wonderful article; especially to be read by those newly diagnosed.
    I've had ms for nearly twenty years and I agree totally! Here's my SUGGESTIONS! (And my REGRETS)
    1.MOVE, MOVE, MOVE, WALK WHILE YOU CAN..It will PREVENT so much later on.
    2.Get some SUN...15 min daily and VITAMIN D3 at least 4000 IU daily! NEW!
    3. Get on an ABC drug ASAP.
    4.DON'T take NOVANTRON>This caused me to have LEUKEMIA(in hospital 6 mos)
    5. Eat healthier/ MOVE/MOVE/MOVE! DO PHYSICAL THERAPY! This really HELPS!
    6.FIND A HOBBY. You can have pain and do nothing or have pain and move it!
    7. MS is NOT EVERYTHING! YOU ARE NOT YOUR MS! DEPEND ON GOD! MOVE-MOVE MOVE! HANG IN THERE!

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  24. My MS symptoms began to appear intermittently when I was 17, and when I was 31 they came on hard, right after the birth of my son. My neurologists were cruel and insensitive, and refuse to believe me for years, even as I accumulated 17 brain lesions and became seriously afraid that I wouldn't be able to work anymore. Three years ago I went vegan--not because I thought it would help my MS, but because I was suffering so badly I could not bear the thought of animals suffering. Right about that time, I got a new neurologist who finally agreed to order new tests, and got me diagnosed and put on Baclofen. We started talking about starting suppressive therapy, but I dragged my feet because I was feeling so much better. I never ended up going on a therapy, and nearly all my symptoms (with the help of Baclofen) have receded to the point that I don't even think of them much. One person's experience may not mean much, but oh how I wish I had gone vegan a decade ago.

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  25. I have had MS since 1979. I probably had it longer but the symptoms mimic other things. My neuo at the time gave me the best advice he could, as at that time no medications were available to treat MS. He just told me go ahead have more children (I was only married six years with a three year old at the time)live you life. I did and was always active exercising a lot and just made adjustments as my MS got worse. I had three more kids and can't say MS has hampered me as when they were younger I could do a lot more than then now as a grandmother.

    MS hits everybody differently so no matter how many articles, stories etc. you hear about MS you never know what it will do. I just learned to never give in to MS figuring if I did it won and let me tell you it was rough.

    I was lucky that within six months I qualified for SSDI in 05. It is not near enough for me to live on but together with my husband we get by. I can still drive, do housework,laundry, and cook, but have bouts of horrible fatigue.

    My MS affects my right side, and I have right foot drop which an AFO was too uncomfortable to help. I take Meripex for restless leg and Ampyra. Life has been a challenge but oh God has helped me get through. Take care everyone.

    "Try not to let MS get you down
    Always smile never frown"

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  26. Make sure you treat your husbands/wives like the angels they are for standing by you.

    My wife split shortly after I was diagnosed and my kids haven't tried to make contact for over a year. Last week, my Neuro told me I have moved into secondary progressive so now, I'm dealing with MS and not being able to trust anybody enough to let them get close to me.

    Like I said, treat your significant other like the special person he/she is.

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    Replies
    1. I agree Bob...The ones that stay are Angels...

      My husband did the same, left after diagnosed and we had been together 20 years, My daughter though she lives with dad see me daily, for that I count my blessings. I am sorry that you don't see your children. I also understand the not being able to trust anyone.

      Take care Bob and hopefully things will get better for you, your in my prayers and thoughts.

      Diagnosed June,2012 on Copaxone

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  27. Bob, your observation is a great one - partners and family who stay and deal are true heroes. I am so sorry this has not been your experience and my heart goes out to you. It is cold comfort, but there are many who are in the same situation. You will be in my thoughts. I sincerely hope things turn around. Please keep in touch. :)

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  28. Many of the not-so-newly diagnosed in our support group agree whole-heartedly with the points you made. We are going to see about disseminating those ideas to newly diagnosed individuals in this area.

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  29. I got disability right away. I have Primary progressive. I had to jump through hoops and had to endure a sixteen hour mental ability test, just to make sure I couldn't answer phones. I had intelligence tests, ink blot tests and general knowledge. I was put under a microscope. I am so mentally disabled Social Security sends my checks to my husband.

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  30. Today's my birthday, I'm 29. I was diagnosed with multiple sclerosis when I was 23. Like you, I was in denial, I stayed working, I tried to do it all- house, family, career, being normal. But here I am now, disabled, divorced and living below the poverty line. You make so many wonderful points. You never know when the next flare-up is going to be the one that takes you out for the count and changes your life forever. You need to be prepared, prepared for anything. What I didn't count on was even after an abusive ex-husband, years of pain and stress, was finding an amazing person to share the rest of my life with and guide me through this next chapter-wherever it may take me.
    One thing I'd like to add though is, never stop researching. I didn't know, in the beginning, just how many agencies there are out there that are meant to help people like us. You'd be surprised. Their main purpose and goal is to make sure that we live a life that we're entitled to!

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  31. I'm wondering what others with MS would make of this individual response to being diagnosed with MS. I note that Mr. Davenport intends to continue his solo desert explorations. www.ripleydavenport.com/journal.html

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  32. Thank you for posting! I wound up being diagnosed in August of 2007 and additionally shortly after reading your checklist I can honestly say which I've made every single among the of the errors. I have always been youthful sufficient to turn a few of it around unfortunately I should focus on taking all of my prescription illegal drugs. This checklist is gonna kick my butt in equipment!

    CPAP

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  33. After being constantly accused of being drunk at work, I took a deep breath and told the boss what the problem was. Afterall, I was working for a multi-billion $ company, who always told staff they were an EEO employer, so after 20+ years with them I didn't think I'd have a problem. How wrong I was. Because I could no longer legally drive, lo and behold..they made driving a mandatory task. Oh well, the anti-discrimination board would help me. WRONG!!! because it was a "commercial decision", it was not driscrimination, the company had to look after their shareholders and staff bonuses etc. The few interviews I have been successful at getting, when I advise why I had left a long term employer, the answer is "We'll call you." (which never happens).

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