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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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