Twenty Years

It started out with an odd feeling in my legs when I was 18, and then again when I was 20. Sometimes they felt cold, a bit off. Then there were times I didn’t feel myself. I couldn’t put my finger on it.

As a child I had psychomotor(not somatic) seizures. They started when I was one and lasted until I was in my early teens. When I was about 13 I pulled myself off the medications. I just didn’t want to be on them anymore. And strangely enough I had less seizures. Only on a handful of occasions since have I had them.

When I now later had these odd symptoms I knew it wasn’t the same thing. This wasn’t my brain this was my body feeling off. I brushed it off for the most part.
I became a bit more suspicious when the woman who my dad sent me to for the once in a while acupressure session told me she felt a coldness, something dead, within my left leg and left arm. That was what I sometimes felt.

Fast forward about 4 years. I had been an assistant manager at a Pier One. I just turned 24, I had a fantastic boyfriend and I had great friends both at work and outside of. Life was great. Then while climbing a ladder at work to reach a table I fell backwards and hurt my back. I was sent to the ER and under Workman’s comp they ran several tests. My mom looked at me in the hospital and said “maybe it’s time to get that MRI”. So they ran one for safety precautions.

They found something odd. I was told to consult with a neurologist. We found one that had a good reputation and we went in. It was there that I was told that I had MS. I was floored. I’ve never been the person not to be in tune with their body and being the obsessive reader that I am, I research, research, research. I looked up my symptoms on that newfangled internet thing and that’s what I was coming up with. My being floored had less to do with being surprised I had the illness, it was more that I was right in diagnosing myself.

We had issues with this doctor and started going for second and third opinions. The first was at Northwestern with the same Neurologists that worked with me as a child. They gave me the second diagnosis. Yup, still the same. A few months later we decided to go see the famed Dr. Tony Reder at UIC and he performed a few tests including the dreaded bladder test and he agreed with that initial diagnosis.

Now at this time they said it was still very mild. I may never progress very far. The most problems I would endure would be some weakness and fatigue. And they were right. For about 8 years.

It for the most part had followed the part of relapsing remitting. The mildest form of MS.

I was 32. I had been divorced two years and the primary parent to my 5 yr old son for a couple years. And it wasn’t easy. I also worked for my family’s company, a successful building and development corporation. They gave me a condo in one of their developments that was across the street from their main office where I worked for a few years as the front desk secretary/administrative slave(dad, I’m kidding). It was June of 2003(It’s 11:30 at night and my husband informs me I wrote 93 earlier. Which would have made him 14 and our eventual relationship months later terribly wrong), and I had messed up badly at work. I mean super bad. Some personal issues I was dealing with managed to come between me and the job. I was fired. For a week. It was horrible. Having your family fire you is up there on the crappiest thing you can experience scale.

I groveled and they let me come back.

My first day back I was ok but I must have been holding on to a lot of stress and trying to put forth a brave face for most of the day. Which I do often. And it backfires. This day it backfired hard. I went home for lunch.

However as I exited the elevator to my floor it all went terribly wrong. Suddenly everything in front of me started to blur until it went black. I could not see a thing. I managed to get myself to the left wall in the hallway and make it to my place. Thankfully it was a short hallway with few units. I had my phone in hand and managed to find the keys in the darkness to call my dad. I made it inside and sat down crying, explaining to him what had happened. As I sat there in shock he made it over to me and sat with me until things slowly came back into focus. Once I stopped hysterically crying I called my Dr. I really liked this man and he was upfront and sarcastic. Something I like in a person. We also hit it off and he always to this day thought of me as an enigma.

I went to see him a couple of days later and he ordered an MRI. The night before the MRI I was with my then boyfriend M at a Wire concert at Abbey Pub. I think I lost most of my hearing that night. I remember that the next day the technicians asked me if I’d be ok with the noise, and I laughed and said after seeing Wire in concert the noises would be about the same. They really were. And to this day when I get an MRI I just equate the noise to that show, it helps me through it.

A few short days after the MRI Dr. McCoyd called to give me the results. He said yes there were two more small, very small lesions on my brain. But the thing that gave him pause was that it showed that my brain was shrinking. I was in the parking lot of my building and I sort of just sunk to the ground when he said this. Now he went on to explain that this wasn’t uncommon with MS and not to worry too much. Easier said than done. You don’t tell someone their brain is shrinking and then expect them to move along.

I’m a writer. A thinker. A lover of words, books, art and film. Music. I need something that moves me in front of me at all times. There were so many things I wanted to do. My lifelong dream was to write a book, have it sell and be famous. Today I’d settle for 20 people reading this post and commenting on it. I have low expectations these days.

Dr. M put me on Avonex. Now this is where this piece will get tricky, and I may piss off a few people. People who have MS or people who have loved ones with MS.

I don’t like the MS medications. I went on the Avonex for a few months. I made M give me the injections. We had the nurse come and show us how. Now I know he’s reading this and won’t object to the following- we didn’t have the most stable relationship and I’m fairly certain my forcing him to give me the avonex for a while did not help matters. For the record we made better friends then anything and we still are all these years later.

The Avonex felt like death. The next two days I felt like I had the worst flu of my life. The two days after that while I physically felt better I noticed I felt a bit unhinged mentally. And this kept going for a while. I fought with M endlessly.

I would start skipping a week here and there to give myself a rest. It was taking a major toll on me. Within weeks M and I split up. That was inevitable. Like I said, we were better off as friends.

Within that time I met my now husband. I kept going a few weeks more with the Avonex but just could not take it anymore and I stopped.

I felt better. Then Charlie had his first breakdown. He was six. I stayed strong while he was in the hospital but within 36 hrs of him being out I started suffering severe anxiety attacks. Something I’d never had. My body gave up on me once again. I barely made it through.

Less than a month after that Josh decided he wanted to deal with me, my son and our problems and become part of our family. So 4 1/2 months after dating we got engaged. Ten months later we were married. However within that time I was back on the avonex for a short while. Once again I lasted as long as I could and quit. The side effects to me were worse than the MS.

Within four weeks of marriage I had another major flare. It was thanksgiving weekend and I ended up in my dr’s partner’s office. It was a Saturday. The guy prescribed prednisone for me. Only he gave me about three times the amount and within days I not only looked like a giant moon but I was a bitch on wheels. I was horrible. I fought with everyone near and dear to me and caused a friendship I held dear to implode for several months. It felt awful.

I was fine for a long time after that. About a year later we found out Esme was coming. Everything was progressing smoothly. It was a few months after she was born that I started having little problems here and there. I couldn’t walk one day. I got up and my leg went out. Thank god she wasn’t in my arms. My hands would tremor.

I kept going because there was nothing more I could do. But there were noticeable differences.

We moved from our high rise in the city to a two flat in OP Where to get from car to door I had to walk up three flights of stairs each day with infant/toddler in tow. Within a year it hurt me. My legs while feeling stronger in some ways felt weaker in others. They were slower.

One day while walking down from our attic bedroom with Esme in my arms my leg fell out from beneath me and I slid down fifteen stairs. My left leg twisted under me and I sprained my leg and ankle. Three months later I stood up and passed out for 30 seconds. Josh rushed home and I was admitted to the hospital for the night. The doctor expressed his concern that things were maybe getting a bit worse.

However I fought him saying I would never go back on the medications. Too many stories of people who had taken them ending up with worse symptoms, people who then would get prescribed drug upon drug for symptoms that were causing more symptoms of something else. It was a vicious cycle to me.

After this I would say things blur a little for me. Life went on. Too much going on with Charlie and raising a toddler. We eventually bought a house in another suburb and settled in.

After we moved little things kept happening. I would lose feeling in my arm. Then a leg. My eye would blur. I felt like my brain moved slower.

Eventually I found a new doctor, I really like her. She said yes the lesions are there, one more then my last MRI with Dr. M. She understood why I didn’t want to take the meds and said while my flares are occurring more than they used to, I hopefully would never progress much more considering how many years have gone by. Usually people were much worse off by 20 yrs or they would stay as they were. I was never sure whether or not to be comforted by those words.

I haven’t seen her in over a year. Not because I don’t want to but because I have a tendency to try and push aside the illness. I’ve never been one to use it for pity. I’ve never had a fatalist attitude about it. It’s there. There’s nothing I can do about it as far as I’m concerned. I don’t look at it like a death sentence.

Then this year happened. Last November C was in the hospital again. Outpatient for two weeks. But it was rough. And once again it happened before a holiday. He was done three days before Thanksgiving. Once again I decided to be as strong as I could be. Then I went to my in-laws for the holiday. Thanksgiving morning I went to get up and couldn’t. My legs were gone. I whimpered and shook Josh awake. I knew what was happening. I couldn’t move them. They were dead. He’s always been good in dealing with me when this happens. He knew that they would take their time and let me stay in bed. A couple hours later I could at least move. But for the rest of the weekend I moved slowly. I felt like a truck ran over me. I could barely go up and down the stairs of his parents house. And the downstairs is where everyone spent most of their time. If I went down, I wasn’t coming up for a few hours. By Saturday I was ok. I drank a little too much wine that night. And for a few days after we were back I was fine.

It was Friday and I was driving our dog to day camp. Yes doggy day camp. I hadn’t had a lot to eat and just ate a banana and drank some water before we left. It was around 9 am and the kids were in school. I was on the road when my normally car loving dog started crying in the backseat, I tried to calm her when I felt it. My insides constricted it felt like someone was trying to tear my ribs out, everything in front of me was starting to go black and fuzzy, I couldn’t breathe. My arms & hands were tremoring. I thought I was going to die and I hunched over the steering wheel trying as hard as I could to find the closest parking lot. I found the McDonalds parking lot and pulled in. Things relaxed a bit but I thought I would pass out, my left arm was shaking like nothing else. I couldn’t see straight. I called my dr’s office and they suggested I go to the ER. I talked to the nurse for a while and she agreed it could be my MS not a heart attack. I called Josh. He took off from work immediately. The Dr called back and said to just call an ambulance from where I was, I actually laughed and said I couldn’t because I had my giant dog in the car with me. I told her I would try and drive my dog home. And I did. I was ok. But I got home and felt like I was run over. My legs felt like dead weight.

That weekend I could barely walk. Every time I got up and moved around everything felt like it would spin out around me. I spent most of the weekend on the couch. Our dog and cats took turns curling up next to me.

A few days later I felt better and I was ok. But after that everything felt slower again. I was experiencing brain fog worse than ever before. Words I knew before would trip on my tongue. I swear I forgot how to spell. I started dropping things a lot. I broke a couple glasses. I used to be able to type 90wpm. Now my hands trip up and falter on the keyboards. This part kills me more then you could ever imagine.

Then in January I tripped and broke two toes. One worse than the other. The littlest healed immediately. The other one took nearly three months to heal and kept worsening and I was stuck in a boot for eternity. This did not help my mobility issues.

Once I was out we celebrated by taking the kids to the Dells for a day and night. It was spring break. However you were in and out of hot & cold situations nonstop. The walk from our room to the water parks and the restaurants/game rooms was the equivalent of over a mile. I felt horrible that night and barely slept. The next day, even worse. On the way home things were fine. Then halfway home it hit again. The same thing as November. It was the MS hug, it attacked my ribcage, I couldn’t breathe, feel or see. I freaked out, Josh was annoyed and somewhere in Wisconsin we had to pull off the highway.

I’d had another flare. They were getting closer together. This hadn’t happened before.

After that I decided to slow down. I stopped volunteering so much for my kids schools. I said no. I wanted to take it easy.

But the depression and anxiety were taking hold. I was angry all the time. I could feel it building like a volcano. I would cry over everything. This wasn’t supposed to be happening yet.

I already had horrible seeing problems. My peripheral is a mess. I can’t drive at night and forget driving on expressways. Which means my social life has been impossible the last few years.

I was finally angry as all hell at this maddening illness.

However one thing I will never waver on is taking the medications. From my experiences and those from an ever growing crowd of longtime MS patients that I’ve come across on the web, the meds can be more damaging long-term then they are helpful. Then just recently the findings came out against some of the beta interferons and how they aren’t treating people properly. That they aren’t as effective as first thought.

I’m not the same person I was a year ago. I take things in stride. I’ve made really good friends who make me laugh and who make each day go by easier, I’ve learned to let a lot of the old problems go. I’ve learned to relax and try not to be perfect.

This summer has been rough for me. The heat has knocked me down something fierce. Which isn’t surprising considering that Chicago had been in the high 90’s-100’s for nearly two months straight with few if any days of relief.

I feel for my kids as I couldn’t be the mother they would have liked to have this summer. I couldn’t take them to the beach or the pool. I couldn’t take my daughter to the park. Going outside in anything more than 85 is painful for me. And 98 every day? I was lucky to walk those days. Some nights I didn’t sleep. My legs were in pain from the heat and humidity. If I had to run errands that day it meant that I would cry all night while my legs ached restlessly.

It really pulled me down. Twice I lost/walked away from my purse in stores in one week. Nothing was stolen but it showed how bad the brain fog had affected me. My hands didn’t function. Sometimes I felt like things in front of me were hard to attain. This was honestly a hard summer.

The heat has abated. Today it was 75 and windy. I wore jeans. Tomorrow it’s 74. Next week low 80’s. I’m ok.

In all of this I learned a few things about myself: I have faults. And I need to start living again. To stop being so safe like I have the last few years.

It’s been twenty years since this disease really started to take a hold of me. 18 since the initial diagnosis. I’ll be 42 next month and I have yet to really live out my lifelong dream of writing professionally.

I lost so much confidence in my ability over the years due to this.

I started again because my friend Erin and Josh sat me down one night and told me I had to or I’d regret it. So I started this blog. And the more I wrote the more I realized I had so much inside of me aching to get out.

So I’m going to keep writing. My heart and mind are open now.

And I might try and take those burlesque classes I keep threatening to take. I used to dance, I’m still pretty good. I want to put these legs to the best use I can before one day I can’t. You only live once.

I may one day go on the medications, but only if things become unmanageable. Who knows. I know that after this summer I’m going back to see my Dr this fall. It’s time.

However I’ll never stop living my life. And I’ll never let the MS get the best of me. I may some days never be the same physically, but on the inside I promise not to change.


P.S. This is dedicated to so many people who have been with me through this all these years. Old and new friends/family. If it weren’t for all of you I wouldn’t have made it this far. Thanks. I love you .



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5 responses to “Twenty Years

  1. Hey Jen, hell of a story. MS is the most disgusting disease. It hits everyone differently and it is such a bitch. My mama has MS. She’s had it for about 20 years, I guess. She’s the most inspirational person I know. She’s in a chair permanently now, but she takes everything in her stride. I know sometimes she gets scared, sometimes I’m scared for her, but mostly, she’s the most vibrant, social, wise people I know.
    She stopped interferon. There was a chemo trial that made her worse. She still researches treatments in Europe (miles ahead of Australia) but mostly, she drinks wine, eats good food and laughs as often as possible.
    I send you and yours love and light.

  2. Cristin

    Take Burlesque! You’re doing exactly what I did before I started skating. Wish I had started 10 years sooner…

  3. Kathleen Flaherty

    Your MS is so much like my ME/CFS. Can’t help but wonder about that. The great thing, Jen, is that you got to have a family of your own, despite everything. A great husband. Two beautiful kids. I’m always happy for you about that. Hope you get to do more writing. But…I will share this: I’ve written and written and written and written, and much of it has been useful, and some of it has made me “famous” in certain circles. But I would toss it all away for a real family of my own. You got your priorities right.

  4. Glad I stumbled across your blog. I’m at 15 years myself although they’ve been a lot easier than yours sound like. I actually don’t write about it much because it’s my tendency to downplay it. Look forward to learning more about you.

  5. I have had ithis God damned beast for over 40 years and I relate every word you’ve written. I love to show So You Think You Can Dance and wouldn’t it be great if they put on a show called The MS Dance. It would be awe inspiring, filled with brave people and terribly funny. So glad I found you.

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