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KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic.  There are two parts to each diary.  First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and/or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be splayed or neutered or sent to Limbo.

I have a full-time job with a local newspaper, and I'm a graphic artist.  I'm good at what I do. In my spare time I make leather masks. This started out as a hobby, but by the time I got a promotion in 2005, this had become more important to me than my regular full-time job.  

In 2006, I began experiencing some strange symptoms, and they got worse in 2007.  I went to my PCP.  After some testing and consultation with a neurologist, I was diagnosed with multiple sclerosis.  

Working with MS has been difficult, but not impossible.  It's given me a greater understanding of how important it is that we reform health care, and make it accessible to all.  I'm very lucky to be employed and have health insurance.  There are many others who aren't as fortunate.

More below the fold.

My Diagnosis

The majority of people with multiple sclerosis have what they call relapsing-remitting multiple sclerosis (RRMS for short.)  This is described as disease progression with periods of remission, divided by relapses when the symptoms get worse, or when there are new symptoms.  About 50% of people with MS will progress into secondary-progressive MS, which is characterized by fewer flares, but steadily worsening symptoms.

I first began experiencing symptoms in 2006, and was eventually diagnosed  in August of 2007 with relapsing-remitting multiple sclerosis.  At the time of diagnosis, I had already gone through a flare, which included vertigo, optic neuritis (inflammation of the optic nerve,) nystagmus (involuntary movement of the eye,) paresthesias (phantom sensations) in my face and hands, cognitive problems, and weakness in my right leg and arm.

They had found one lesion in my cerebellum.  Since then, they've found I have more lesions in my corpus callosum, my temporal and frontal lobe, and my spine.  Recent tests show that I have some atrophy of the retinal nerve fiber layer, which indicates axon breakage without lesion formation.  The lesions don't always tell the whole story.

I thought now that I was diagnosed, I would start taking a DMD (disease-modifying drug) and everything would be okay. I was wrong. These drugs are meant to reduce the number of relapses, but they will not prevent relapses, and they do nothing for day-to-day symptoms. All of a sudden, I had a lot of day-to-day symptoms. I kept running into doorframes, and found I had to press against the wall to keep myself from going over. My entire scalp felt like bugs were crawling on it.  My eyes were seeing different colors - the colors in my right were very intense, while my left was washed out. I had problems with picking up objects and holding on to them.  Sometimes my knuckles would burn like I'd dipped them in acid. Then there was the almost constant vertigo. After a while I got used to it, but I always had some sort of body buzz. When I got home from work, I slept. I'd leave work an hour early several times a week, and then sleep until it was time to go to bed. I'd sleep as late as possible, and then get up and drag myself into work.

The cognitive problems were my biggest concern, and so I asked the neurologist to be scheduled for a neuro-psych exam.  The neuro-psych is an all-day exam that tests your cognitive abilities, and is quite good at identifying specific areas of organic damage.  The psychologist identified that I had some cognitive impairment - moderate in some areas, but taken as a whole, I was rated as mild.  However, I had dropped 30 IQ points!  I was horrified.  

All this, and I'm told I have a 'relatively mild' case of MS.  I suppose so - I can still work a full time job.

Working and MS

Trying to work with all these weird symptoms going on was rather like trying to defuse a bomb while you're on hallucinogens.  When I started going through the diagnostic process, I was in a small work area with two other people, both of whom were in their own cubicles.  It made my problems much easier to hide.

One of the hardest things to deal with was the cognitive problems.  I couldn't track from one moment to the next what was going on.  I would try to say something, and use the wrong word for the object I wanted.  I was just as bad with written language.  For several weeks I couldn't type a single sentence correctly.  My memory was shot - I couldn't remember numbers or even what day it was.  I would see people that I knew, and not recognize them.  It got to the point where I had to point at things and grunt to my husband, because I couldn't think of the word in time.  "Use your words!" he would say.

Amazingly enough, things got better. It takes anywhere from three months to several years for your body to repair neurological damage.  I would say that it took about three years for my body to recover from the first flare.  I played lots of games, learned a musical instrument, was on Aricept for about five months, and exercised.  I regained much of my cognitive abilities, although I still have problems with memory and comprehension.

Then 2008 rolled around.  Due to economic necessity, the newspaper started shrinking its operations.  As a result, one of my coworkers in my department was laid off, and the rest of us were moved into a big room along with all the other graphic ad designers in the building.  While I was doing much better cognitively, I was starting to develop problems with my gait.  It became much more difficult to hide my symptoms, and I developed new ones.  I had planned on not telling anybody about my diagnosis.  But everybody was worried about me, and they didn't know what was going on.  I finally just started telling people that I had MS - and they were okay with it.  They haven't treated me any differently than they did before.  I haven't gotten a lot of sympathy or pity, (which I can't stand anyway) so it looks like telling my coworkers was a good idea.

I'm still working full time, and still making and selling masks.  I'm taking less sick time, as I have less day-to-day fatigue and fewer flares.  In fact, I haven't had a flare in two years, which makes me wonder if I'm going into secondary-progressive MS.  The quality of the masks has improved, along with my cognitive abilities.  The mask-making business has done poorly in the last few years, because of the recession, but it still provides a little extra income for us - we can use it, because the income from my full-time job and my husband's isn't enough.

The Crunch

Work has become very stressful.  The newspaper industry is really suffering.  We're having to make do with much, much less, and we're expected to do more.  I'm having to do more things and learn new tasks constantly.  

What I've found out is that I need to broaden my skill set.  I've got plenty of skills, so now I need experience in applying those skills to a new kind of media - online advertising. I was worried about learning new skills, but I seem to be learning Flash all right. Repetition is the key - the key is repetition!

Having a chronic disease has made me an advocate for single payer health insurance.  What I'd like to see is free health care for all, but I'm realistic.  I'm an advocate for any kind of health insurance reform, including the Affordable Care Act.  It's obvious that our health care system is broken.  How many people would be contributing to our society in meaningful ways if they were able to get the drugs they needed to function?  How many people have died because they didn't have preventative care?

Take my example - If I weren't taking the drugs I am right now, I wouldn't be able to work full time.  I'm on a spinal muscle relaxer called Baclofen to control my spasms and spasticity.  I take Keppra because of the myoclonus in my leg, back and soft palate.  I take Betaseron so I'll have fewer relapses.  I also take warfarin because of the blood clot in my right leg (another problem with MS is that the circulation in affected limbs is often deficient.  I had a blood clot last year in October.)  What in the world would I do if I couldn't afford the drugs I'm on?  Because of my lack of access to medical care, I would quickly be unable to work.  I think I would eventually be classified as disabled, due to disease progression and ongoing daily symptoms.

We all need access to health care - preventative, emergency, and specialist care that will help keep us healthy.  It saves money for the hospitals, it saves money for the individual taxpayer, and it makes us a healthier nation.

Working with MS isn't easy.  Fortunately I have a job where I can sit down, in an air-conditioned room.  My job doesn't require me to lift precious or heavy objects.  If I make a mistake, nobody gets hurt.  Not everybody with multiple sclerosis has it that good.

Meanwhile I'll keep working, stay on my medication, and continue to make a positive contribution to society.

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Peace

CJ

Originally posted to KosAbility on Wed Aug 03, 2011 at 02:00 PM PDT.

Also republished by Community Spotlight.

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Comment Preferences

  •  Wonderful diary, love the masks (17+ / 0-)

    wish I could afford one, although I've been told I look like an ape without a mask!

    I'll be back in about 20 minutes or so

    Peace

    CJ

    Some people make you want to change species

    by ulookarmless on Wed Aug 03, 2011 at 02:07:01 PM PDT

  •  Tipped & Recced. (19+ / 0-)

    I have a niece(-in-law) with Primary Progressive MS, who finally had to stop working.  I hope you can continue, and all goes as well as possible.  Thanks for a very inspiring diary!

    GOP Agenda: Repeal 20th Century.

    by NormAl1792 on Wed Aug 03, 2011 at 02:20:32 PM PDT

  •  I had a root canal done (12+ / 0-)

    that turned out to be done improperly, after three 'corrections' my tooth has been irreparably ruined and will never stop causing me problems. I found out afterwards that the original dentist had MS, had had it for some time. I noticed his hands shaking when he was doing xrays and mentioned it, and he got very offended.
    He probably should not have been working, at least not that day, not with disclosure.

    "I'm sculpting now. Landscapes mostly." ~ Yogi Bear

    by eXtina on Wed Aug 03, 2011 at 02:23:22 PM PDT

    •  As a person with disabilities... (9+ / 0-)

      There is no excuse for performing important tasks we are not capable of.

      The problem is, the 'wingers try to expand the definition of "ability" to exclude anyone below their capabilities.

      (That sound you are hearing is a paradigm being shifted at Warp Factor Infinity using no clutch.)

      by homogenius on Wed Aug 03, 2011 at 07:17:24 PM PDT

      [ Parent ]

      •  In that persons defense (0+ / 0-)

        or at least for context, he may have feared admitting he had the disease, for fear that it would end his career.

        It certainly ended the career of many people, including actors like Terri Garr.

        Once word gets around you have MS (and many people confuse MS with Muscular Dystrophy), you can (and probably will) lose your job, and you will be unemployable. No company wants your medical bills on their insurance plan.

        This is the reality of a country, that despite the ADA, has no use for "cripples".

        •  I have a coworker who was (1+ / 0-)
          Recommended by:
          ulookarmless

          having cognitive problems due to some undiagnosed disorder.  He was let go earlier this year.  Granted, he probably didn't plan very well, and used sick time rather than short-term disability, but it's one of the reasons why I haven't wanted to talk about it with my employer.  Especially since they're cutting people right and left to make ends meet.

          I'm just lucky that nobody's life depends upon me being able to do my job!

          That can mean only one thing: Republicans think all the jobs are trapped inside women's uteruses. - BiPM

          by Jensequitur on Thu Aug 04, 2011 at 11:24:00 AM PDT

          [ Parent ]

        •  So there's no difference... (0+ / 0-)

          Between an actor and a healthcare practitioner?

          I've worked in medical offices and I have zero confidence that doctors will police their own any more than cops.

          I'm unemployed and uninsured with multiple disabilities. I would never tell a potential employer about them. But I would no sooner perform a function at work that I'm not capable of than I would drive drunk.

          (That sound you are hearing is a paradigm being shifted at Warp Factor Infinity using no clutch.)

          by homogenius on Tue Aug 09, 2011 at 11:22:58 PM PDT

          [ Parent ]

  •  I have a co-worker with MS. (12+ / 0-)

    He's lucky. He was in the Navy and has access to VA care. I know many are not.

    As for me...right ankle's started killing me. I think my hip problem may be bursitis. We'll see. Husband's made a fruit sauce substitute for tomato sauce, as I'm allergic, and it's thoroughly wonderful.

    I'd love to have access to regular health care. Sadly, that's not going to happen while we have such craven members of Congress that even the liberals refuse to use parliamentary procedures to protect us from death by a thousand cuts. I think Keith Olbermann's right, we're going to have to bypass them somehow to get what we want. I don't know how yet, either, but if anyone has ideas I'd love to have something constructive to do with my anger.

    Other than planning to support primary challengers to all current members of Congress, that is. :D

    "This is about the human heart, and if that sounds corny, so be it." -- Keith Olbermann

    by allergywoman on Wed Aug 03, 2011 at 02:24:29 PM PDT

  •  Lots of September dates available (6+ / 0-)

    on Wednesdays.

    See the end of today's diary and then shoot me an email.

    First one in gets the date and a free rant on a subject of their own choosing.

    Also, don't forget the jokes and funny stories for August 17, you only have til next Wednesday (August 10) to get entries to me.

    Peace

    CJ

    Some people make you want to change species

    by ulookarmless on Wed Aug 03, 2011 at 02:53:00 PM PDT

  •  Thank you for this story! (11+ / 0-)

    And, neat masks!

    Have you considered, for your website, having pictures of people modeling them?  Even just yourself or your husband?  I find it kind of hard to imagine what they look like on, especially ones that are red against the red background.

    (Not that I can afford one anyway, but that might make a difference in some people's decisions.)

    Also, do you sell on Etsy?

    •  Actually, I have... (10+ / 0-)

      Just can't afford to hire real models right now.  Me and my husband have modeled them in the past, but we've found that we really need a professional shoot with a real photographer in a real studio!

      I do sell on Etsy, but I haven't recently.  I have a couple of large-concept masks - Evil Clown and Steampunk Cthulhu - that would do well on Etsy.  

      What I need to think about is maximizing my 'remote selling opportunities.'  Places like Etsy and deviantArt are perfect for that.  I've been focusing on getting into art festivals, but it's a lot of work, and I can't do it in the heat.

      That can mean only one thing: Republicans think all the jobs are trapped inside women's uteruses. - BiPM

      by Jensequitur on Wed Aug 03, 2011 at 03:26:23 PM PDT

      [ Parent ]

  •  Attackss are more frequent early in course (13+ / 0-)

    of disease. That is probably what the lack of recent attacks reflects, not some quick slide into secondary! Years between attacks while relapsing-remitting is very common after the first few years.

    You already got results of neuro-psych exam but for others with MS or similar disease take any offered findings of personality test like MMPI with a grain of salt. Many of the questions in a couple of scales are about actual MS symptoms like numbness or tingling. The hysteronic  (and I forget what others) is often elevated in people due to their physical symptoms. Not all testers know this

    Wishing you luck and health.

  •  You are really a strong person (10+ / 0-)

    to persevere with such difficulties. I can relate to the brain problems because I have the same issues with Lyme disease and currently can't work. It's frustrating to feel stupid.
    I wish you well for the future!

    I hope it's okay to mention this but do you know about Dr. Swank's research on low fat diet and MS? He also published a diet book for MS.

    I think Dr. Swank is now retired, but Dr. McDougall is continuing his research. You can get an overview of the issues on diet and MS on this page of the McDougall website.

    ~On, Wisconsin! On, Wisconsin! Raise her glowing flame!~

    by sillia on Wed Aug 03, 2011 at 03:45:42 PM PDT

  •  Thank you so much! (18+ / 0-)

    I have ms too. I worked full time as long as I could. My health insurance company denies just about every new med I am prescribed and forces me to appeal. They also delay by making me get certain meds re-authorized every three months, and they take at least 2 weeks and once 6 months to get the paperwork right. They made me go without Avonex for 6 months. The average time I would go without it was/is about 1 or 2 months. When I was working I would have to take time off to fight with insurance to get it reauthorized. Their delaying it for months also made/makes me have to go through the side effects that go away once you adjust to the med over and over again. Which would also make me miss work. I get mad every time I think about it. I have a did a diary about it and fought hard for a public option. I believe insurance companies deliberately run disabled people out of workforce so they don't have to cover them.

    Thank you for writing this diary. Cognitive issues are my most disabling symptom. I really appreciate you explaining it for me. I hate the way my thoughts are so garbled up. It is like I don't even remember basic sentence structure.

    "IJDH provides the tools for people who care about Haiti to make a real difference on the ground."-- Bishop Thomas Gumbleton

    by allie123 on Wed Aug 03, 2011 at 04:29:59 PM PDT

    •  Allie, we're with you all the way (10+ / 0-)

      They will never take our spirit!

      The poor bean counting fools are empty inside, I feel sorry for them.

      Peace

      CJ

      Some people make you want to change species

      by ulookarmless on Wed Aug 03, 2011 at 04:55:14 PM PDT

      [ Parent ]

    •  Sadly, my wife hears this story all the time (2+ / 0-)
      Recommended by:
      allie123, ulookarmless

      in her volunteer work.

      Folks, Allie's experience is the NORM for this disease. It is expensive to treat (often misdiagnosed for years) and insurance companies fight tooth and nail to avoid paying for it.

      If you have a job, you had better keep it, as getting a new job will be next to impossible. And while your company MIGHT make allowances under ADA if you have a visually obvious problem (use a cane for example), you will get ZERO allowance for cognitive problems.

    •  Isn't it crazy? (1+ / 0-)
      Recommended by:
      allie123

      You're sick and having to fight the cognitive problems, and they make you jump through so many hoops to get the help you need.  I was hospitalized last year for a blood clot, and the paperwork afterwards was so heinous it was worse than the blood clot.

      That can mean only one thing: Republicans think all the jobs are trapped inside women's uteruses. - BiPM

      by Jensequitur on Thu Aug 04, 2011 at 11:40:42 AM PDT

      [ Parent ]

  •  Your masks are flat out cool! (10+ / 0-)

    I am going to have to take some time and look through all the pictures. I've recently gotten into fiber arts so I immediately see your masks worked into art quilts.  The lines are so sensuous and voluptuous they evoke such a strong emotion.  

  •  Do you have access (7+ / 0-)

    to LDN (low dose naltrexone)?  I have been taking it for my RRMS for about 18 months now.  No relapse, and energy is back to what a normal person has.  Of course, it's off patent so nobody will double blind/placebo control study it with a 10 ft. pole...

  •  Loved MS students in my evening adult class. They (6+ / 0-)

    absolutely insisted class could not run one minute overtime.  They wanted to get home in time to watch Dancing with the Stars. All three of them said they could no longer move like the dancers, but it gave them so much pleasure to watch others move gracefully.  Each of my students were so positive inspite of their diagonsis.  

  •  I became convinced that healt care reform was (10+ / 0-)

    necessary when the husband of my best friend from high school was diagnosed with MS. They were both research assist6 years he required fulltime care, and she needed to work so he moved in with his parents. Two years alter, hsi parents couldn't handle the caregivng because he ws having frequent seizures , and he needed to go into assisted living--really, a nursing home.  Since her salary couldn't begin to cover his expenses, she was forced to divorce the man she loved so he could go on Medicaid. The only upside was that he  had no short term memory and never really knew they were divorced.  Three years later she was a widow like me ( I lost my husband to an undiagnosed hear condition).

    I remember being so angry that this had happened to them because they were such wonderful people, kind, honest, hard-working, gentle, kind.

    Your masks are magnificent. I became an unintentional mask collector  when I ws given several; for being a guest at sf cons, and friends started giving them to me.  I covet you Fire mask (and will bookmark it and send my hsuband there as a gentle hint at what I want for Xmas!)

    The last time we mixed religion and politics people got burned at the stake.

    by irishwitch on Wed Aug 03, 2011 at 08:04:51 PM PDT

    •  You do cons? (0+ / 0-)

      Which ones? I am an Old School Trekkie (yes, I said Trekkie, I've was one before the term was considered "offensive"), and have done hundreds of cons over the years.

      You are an author/artist perhaps?

      •  Haven't in years. (0+ / 0-)

        Used to do Boskones, Lunacons, EMpiricons, Balticons, Philcons--NE corridor, basically.  But as a Navy wife we couldnt' aford them--Dragoncon's down the road an hour but it's too dmaned expensive.

        I wrote as Gillian Fitzgerald in the 89s. Which is my na,e

        The last time we mixed religion and politics people got burned at the stake.

        by irishwitch on Thu Aug 04, 2011 at 08:47:57 PM PDT

        [ Parent ]

    •  It sounds like he had a (1+ / 0-)
      Recommended by:
      ulookarmless

      progressive course.  That's so sad - I'm lucky that I have the mild course of the disease.

      I think there was a couple in Sicko that was advised to get divorced so they could get insurance for their child, who had a pre-existing condition.  Just ridiculous...

      Thanks so much!  The Fire mask was the first design I did in this style, with the rolled eyeholes and the 4-5 oz. weight leather.  

      SF cons, huh?  I've done A-Kon, and really enjoy it.  I'd love to do the biggies - Dragon and Comic - but that sounds like a lot of work.  

      That can mean only one thing: Republicans think all the jobs are trapped inside women's uteruses. - BiPM

      by Jensequitur on Thu Aug 04, 2011 at 11:39:10 AM PDT

      [ Parent ]

      •  NO ONE should have to divorce to get (0+ / 0-)

        health care. My friend was devastated. SHe called me the night the divorce became final.  And the night he died.  It took ger new man years to persaude her to marry him because she felt that soemhow she was responsible for DOnald's death--when his alcoholic ex totaled her car and odied, the boys came to live iwthhim, and talked my friend into marrying him becuase it would look better.  They ahve 2 kids.  Second hsuband is a doctor.

        The last time we mixed religion and politics people got burned at the stake.

        by irishwitch on Thu Aug 04, 2011 at 08:50:18 PM PDT

        [ Parent ]

  •  CCSVI (3+ / 0-)
    Recommended by:
    ulookarmless, ilovecheese, falina

    Not sure if you have heard of this theory.  Canada is (finally) funding a treatment study.  It has to do with the jugular and/or the azygous veins in pwMS being stenosised, so blood doesn't flow correctly from the brain back into the heart.  Keep your ears open as there is loads of new research happening.  Montel Williams just had the procedure (venoplasty) to correct his stenosis and will do a show this autumn about his experience.  

  •  My sister had MS -- and so did I. (3+ / 0-)
    Recommended by:
    falina, fiddlingnero, ulookarmless

    I just wrote a huge comment detailing how she died and on the other hand, how I've gone symptom-free for 11+ years.

    My sister died of cancer eventually.

    Anyway, I am not going to recapitulate the story.

    Long story short:  Timothy Stout's recommendations (bilberry, pycnogenol, grape seed extract) worked for me.

    I became convinced:

    - a dietary or nutritional supplement solution can be very helpful for a large number of MS sufferers.  It is not clear that a particular solution will work for most people.  People need to experiment with their own solutions.

    - it seems that the possibility for a solution to work is much greater the earlier someone is in the progression of MS.

    I have also realized that MS sufferers are barraged by a lot of scam artists.  Or by a lot of hucksters.    I used to proclaim this story more forcefully.  Now I'm lower key about it.

    One final piece:  I was visited by a boss of mine from several years back.  He had severe nystageum and had been told by his doctor that though a progression to MS was relatively unlikely for someone of his age, his eye problem would not be going away.

    I told him of Stout's recommendations and how they had worked for me. Three months later the doctor declared he had never seen a recovery such as  that experienced by my former boss.

    Best of luck to you.

    •  I don't do supplements (1+ / 0-)
      Recommended by:
      ulookarmless

      Except d3 in the winter, but I have radically changed my diet (no gluten, casein, legumes, artificial sweetener) and I eat pasture fed meat and no-spray or organic everything else almost exclusively.  I think that plus the LDN has been hugely responsible for not having a relapse since onset.  Yep, lots of hucksters out there, including the big pharma pushers.

      Very sorry to hear of your sister.  

      •  Yep, sounds like you discovered what I did: (1+ / 0-)
        Recommended by:
        ulookarmless

        Radical dietary interventions can be very useful.

        I was lucky.  Mine didn't have to be all that radical.  And it appears to have stabilized my immune system on a long-term basis.  I am drastically more healthy in my dietary and general living approach than before as well.

        Of course, I can't prove it, but the Betaseron and Avonex were so hard on my sister's body that I strongly suspect they may have played a role in her getting cancer.

        She tried the regime I was on and said it improved her, but in the end she opted for the half-measures of the pharmaceutical-industrial complex.  I am not against big pharma per se, but they've diverted a lot of attention from more promising, and significantly less expensive treatments, I believe.

  •  Your masks are gorgeous (1+ / 0-)
    Recommended by:
    falina

    I think they would go over well with customers at science-fiction conventions, if that's something you haven't tried.

  •  Couldn't sleep (4+ / 0-)

    Decided to read, sometimes you find a diamond.  Many things about MS are a mystery to me.  I have never had anyone who was close to me have to deal with it, and it does seem like those on my periphery with it do the best they can everyday and work hard to not make demands on the rest of us.  Thank you for the glimpse within.  I hope you don't mind if I admire you just a little.  Your artwork is excellent too, you are obviously very gifted in your profession.

    When our son was born 11 years ago with a genetic disorder that was when I had to notice that our healthcare system was broken.  He was denied more often at the beginning under Tricare.  He isn't denied as often now, and I wonder if that is because active duty at this point can't deal with the stress of having their family members denied coverage for what they need.  We must fix our system though, other industrialized nations are not doing this to their people.  It is not necessary for these struggles to be foisted on anyone.

  •  I've had MS since 2006... (5+ / 0-)

    Drove truck for 20 years and over a million safe miles after diagnosis. Retired now, still bicycle  and active in politics. The key is to keep active and never give up!

  •  Another excellent informative diary. (1+ / 0-)
    Recommended by:
    fiddlingnero

    This series is so helpful to people who do and don't have direct experience with these different ailments.

    Best wishes for new ways to keep you feeling better!

    Out in the west Texas town of El Paso...

    by falina on Thu Aug 04, 2011 at 06:44:07 AM PDT

  •  My wife was diagnozed with MS in 1991 (2+ / 0-)
    Recommended by:
    ulookarmless, Jensequitur

    And we have been dealing with it for 20 years.

    She was fortunate enough to be diagnosed just as drugs were coming on the market to treat and slow the disease, and we were doublely fortunate to be employed and have health insurance to cover it.

    Well, most of it.

    Back then the drug (Betaseron) was $1,800 a month, and we had to cough up $360 a month . This wasn't too bad, but as time went on, other drugs had to be added to menu to deal with other symptoms.

    The major problems my wife has to deal with these days are spasticity in her legs and feet (try tightening your calf muscles, while pointing your toes and curving the arch of your foot as hard as you can. Now hold that for 30 seconds and at a time, and repeat all night while trying to sleep), balance problems (she has had three very bad falls, the last where she fell face first onto the curb while walking out to get the mail at work, resulting in $15,000 damage to her front teeth, which workman's comp denied paying since getting the mail was not considered "a work related task") and she has no feeling in he feet. She describes walking as dragging around lead weights.

    My wife has managed to remain upbeat despite all this, and does volunteer work with the MS Society, helping the newly diagnosed cope with the anxiety and fear that comes with being told you have a degenerative neurological disorder.

    Speaking of fear and anxiety, looking after a chronically ill person, and seeing them slowly get worse takes its toll on spouses. After 20 years of this, my mother's tragic death, and the loss of my business in 2007, I finally cracked last year, and had two trips to the emergency room with severe chest pains, and in a state of severe emotional distress (kind of expected  if .you think you are having a heart attack)

    What triggered all this?

    My wife was out of town for a family reunion with her folk and I was suddenly seized with the thought of her dying and could not shake the thought.

    In our culture, men are not supposed to become "hysterical", it is frowned upon as "unmanly", but the thought of life without my wife drove me to a state of grief and despair that was literally, physically painful. I began to have pressure in my chest and difficulty breathing. I became dizzy, and nauseous.

    As these were the classic symptoms of a heart attack, I went to the ER (though I put this off for several hours because I do NOT like hospitals and LOATHE being the center of attention in such places. Yes, that was stupid, but fear is an excellent fuel for denial) ). Finally, I reached a point of maximum pain, checked my blood pressure (which was sky high) and reluctantly went. (I also looked around the house and was mortified that if I died, the place was a mess and people would be commenting how bad of a housekeeper my wife and I were at the funeral. Brains have funny priorities).

    My trip to the hospital found no evidence of a heart attack, but my potassium levels were low and I was put on a potassium supplement and my BP med was changed to something stronger.

    After a very uneasy week, I found myself back in the ER again, with the same symptoms, and a similar lack of evidence of a heart attack. I was kept overnight, given a complete cardiac workup, including stress test and my heart was given a clean bill. Which was great, but what was the deal with the whole chest pain thing?

    My problem was then diagnosed as "panic/anxiety disorder", (which caused stress-induced angina) and I was placed on anti-anxiety meds which helped with the now recurring attacks (3-5 times a week) I was experiencing.

    (Side note: Through subsequent discussions with ER staff, my doctors,  and other friends in the medical biz, I have learned that my condition is now seen at least once a day in the ER, more so on weekends. The patients are mostly men who have lost their jobs, fear losing their jobs, and/or are fighting foreclosure on their houses.)

    A year later, while much better, I am still trying to work through the issues with my problem, and my wife continues to deal with hers, with the added burden of a husband who sometimes freaks out and has to struggle to not hide under the bed, curled up in a little ball (a pretty undignified place for a 50 year-old man). I do not like leaving the house, and become very uneasy if I have to travel away from home. Work is tolerable, though by the end of a stressful day (especially one compounded by 100+ temps), the chest pain and anxiety start cranking up, but I have to wait until I get home before I can take any helpful medication, since I "operate heavy equipment".

    So yes, working with MS is hard. Working with a spouse who has MS is also hard (though not as hard as having MS, to be sure). Paying for the various meds is expensive, even with insurance.

    My wife and I work in her family's business, and while the insurance benefits are decent, we still had to shell out almost $5,000 last year on deductibles and co-pays, on top of our insurance premiums.

    But wait, there's more. Since my wife is a shareholder in the business, and I am her husband, by law we both have to pay the full cost of our heath insurance premiums. This means that last year, about a third of our pay went into medical expenses.

    This wouldn't be bad, if the company had been paying dividends, but as we were coming off two very bad years where sales had tanked and we were in the red and cutting staff and hours, there were no offsetting dividends. Fortunately, my wife was salaried, and her pay was uncut, but when we went to a four day work we, my pay dropped 20%. Again, I was fortunate in that I was able to make up the shortfall with another project, but I think our story illustrates how devastating chronic illness is to even solidly middle class workers. We have managed since, again, we have been fortunate in that my wife's family is understanding about her limitations, and makes accommodations I am damned sure she wouldn't get in the "real world", ADA or not. In fact, my wife talks to other MS patients whose employers do their damnedest to get rid of them as quickly as possible. And unlike many "socialist" countries, it is almost impossible to get on disability via Social Security in the U.S., and even if you can, it is a 2-5 year process.

    So, with massive cuts to Social Security, Medicare and Medicaid looming on the horizon, some of you may understand my immense hostility and sense of betrayal over recent capitulation of our "leaders" (especially President Obama) to the GOP.

    So, let me clarify one point for those who get mad at me when I express this anger and frustration: It's not that I am so "spiteful" that I want Obama to lose, it is that I want my wife to live.

    And yes, I am that damned selfish.

    •  I tell my husband every day not to worry - (2+ / 0-)
      Recommended by:
      plan9pub, ulookarmless

      and he tells me that isn't going to happen!  Yes, it's hard for people with MS, but it's also very hard for spouses.  They have to see their husbands/wives deal with the disease, take the injections, have the symptoms, and there's not really much they can do.  My poor hubby was worried about me because I had a bout of myoclonus earlier in the week, and some serious fatigue.  

      I am very lucky to still be employed!  Without it I don't know what we would do.

      That can mean only one thing: Republicans think all the jobs are trapped inside women's uteruses. - BiPM

      by Jensequitur on Thu Aug 04, 2011 at 11:33:36 AM PDT

      [ Parent ]

  •  I have MS (2+ / 0-)
    Recommended by:
    plan9pub, ulookarmless

    I was diagnosed abut 12 years ago and am lucky to have a mild case of the disease. I work full time and don't have any major symptons that force me to change the way I live.

    Have you heard of the new drug Gilenya? It is the first MS drug in pill form, and has great results. After 12 years of shooting myself up with Avonex every week, I was able to switch to Gilenya 2 months ago. It has been a great change! You should look into it.

    •  Of course, therin lies a dilema (0+ / 0-)

      Changing meds.

      Anytime you do this, you then have to wonder whether it will change the course of the disease for the worse.

      Choices like this are agonizing at times, and then you also have to deal with whether the insurance company will pay for it, and how much your co-pay will go up.

      Also, you get "lobbied" by your current drug maker to not take a new drug. Seriously, they can really bug you if you make a change. They specialize in FUD tactics (Fear Uncertainty and Doubt).

    •  I've talked about it with my neuro - (0+ / 0-)

      We're going to wait until it has a little more support.  Betaseron has less success, but more data.  I don't like injecting myself, and I keep forgetting - a pill would be a lot easier to take.

      That can mean only one thing: Republicans think all the jobs are trapped inside women's uteruses. - BiPM

      by Jensequitur on Thu Aug 04, 2011 at 11:34:44 AM PDT

      [ Parent ]

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