Multiple Sclerosis

It had an awful morning in January 2009. I dropped everything and even buttoning my shirt was difficult. I started to notice my hand becoming numb. Having slipped on some ice and fallen on my arm the day before, I thought I had pinched a nerve or something. I decided to go about my day.

As my work day progressed the numbness started to spread. First it went up my arm and to my shoulder. My boss Robyn told me to schedule an appointment with my doctor. I reluctantly called and made my primary care physician.

I was working in Dayton, but I still saw Dr. Furlong in Middletown. The man delivered me and knew my medical history without looking at my chart. I wasn’t going to bother with a new doctor and didn’t really mind the 30-45 minute drive. By the time I made it to his office, my right leg was starting to go numb. I started to believe it was something more than a reaction to my clumsiness.

Dr. Furlong asked me about what I was feeling. The symptoms I described made him want to see me walk. Down the hall and back I went...dragging my right foot with every step, He was worried that I had a stroke and wanted me to go to the hospital. I was a bit freaked out by this, but asked him where to go at the new Hospital in town and where I should park. He said that I shouldn’t drive and made the nurses watch me to ensure that I didn’t drive off. Having known me since birth, he knew I could be stubborn.

I called Jeff. I called Julie. I called Becky. I called Marion. No answer, but I left messages. I didn’t have anyone else to call and was getting worried thinking about what might be wrong with me. I was about to call Carol when my phone rang. It was Becky and I was relieved. I did not want to have to rely on my ex’s mother to take care of me. I know she would have, but It’s not something I could put myself through. Becky came to pick me up and Jeff did call in the mean time. I asked him to pick up my car from Dr. Furlong’s.

Since my mother wasn’t alive, I was grateful to have Becky, practically a second mother, there for me. It was very comforting since I was scared and tried really hard not to show it, but I think she knew. She made me laugh to take my mind off of things. I was embarrassed to answer the admission questions about smoking and drinking in front of her. I wasn’t smoking nor doing drugs, but I did enjoy a beer. She made fun of me for my reluctance to answer the questions. Since Dr. Furlong called ahead, I was admitted very quickly.

I had never spent the night at a hospital as a patient since my birth. I was not happy to be there since I didn’t have the fondest memories of hospitals. Becky made sure I was settled and then went home. Being alone wasn’t the greatest feeling in the world.

The next day, the testing began. An MRI was scheduled and I was wheeled to a waiting area outside of the room with the machine. I didn’t bring my glasses, because they were metal and having had MRIs on my knee, I knew a giant metal wouldn’t be nice to my glasses. Dr. Furlong was waiting for me as well as another man, but I couldn’t see him. I’m sure I looked like a tragic mess in my hospital gown and deshevled hair, but who really looks good in a hospital.

Dr. Furlong introduced me to Dr. Schaublin who was a neurologist. He said that if I would have him, he would be looking at my case. Since he shook my hand and thus was close enough for me to see him sans glasses, I agreed to let him be my neurologist. How could I say no? He was a CUTIE! I would only call him Dr. Schaublin to his face from then on and to my friends he would be known as Dr. McCutie.

Fuzzy pic of Dr. McCutie.

I had only ever gone in feet first into an MRI before to examine my knee. Going in head first was not my idea of a good time. The technician gave me earphones so that I could listen to music. It would not be able to drown out the pounding noise of the MRI, but it was a nice gesture.

There were more tests to be done, and that meant blood draws. I hate those flipping vampires, but I knew it was necessary. I still complained every time a blooodsucker would interrupt my rest just to poke me with a needle.

When the results of my MRI came in showing lesions on my brain. spinal cord and brain stem, they had to do another test to rule out other possibilities like Meningitis or AIDS. Yeah, I thought the AIDS thing was a little far fetched, but you never know. I was pretty skanky and loved to share needles.

The symptoms I was experiencing were familiar. I remember my mother having the same ones, so I was convinced that it was MS. Even though I was told that it wasn’t hereditary when my mom was first diagnosed, it didn’t mean that I couldn’t have it. I asked Dr. Schaublin about hereditary and MS and he said that studies were showing that it was in fact hereditary in some cases.

The test to rule out the other diseases was a spinal tap. I of course had to make jokes. I expressed my medical knowledge about how I knew if the fluid was cloudy, that I had meningitis.  Dr. McCutie was impressed until I admitted that I learned that from House M.D. “Why don't you just make ten louder and make ten be the top number and make that a little louder? “ Other than the This is Spinal Tap references, I was NOT happy about this procedure. I will say that I was in cute medical personnel heaven with Dr. McCutie and the Murse.  It made my Spinal Tap Experience more enjoyable. That and my brother Jeff asked if he could watch. He took pictures too...he sucks.

The next day, Dr. Schaublin told me I had MS. I took the diagnosis pretty easily because mom had MS and she was vibrant and had a full life. She had poor balance and tired easily, but she was still active. Just ask the mall. When she walked, it was a bit wobbily, but she always just said she’d put a flask in her back pocket so no one would ask questions. I thought it was an easy plan.

While in the hospital getting steroid treatment, I was lucky to have friends and family to visit. Jeff and Julie would check on me before or after work. Brandy would come stay with me late at night and we would watch bad tv together. Sam would visit me on breaks from work at the YMCA and she brought me yummy cookies. Becky and Mandy would visit me and even brought me an emery board to fix my nails. I can’t remember if it was Becky or Mandy who couldn’t stand the feeling of one on their nails, but I do remember that they brought one to me because I desperately needed one. I never really was alone.

The first three months were hard as I was recovering from my first relapse, trying to get used to medication and dealing with the idea of having MS. Some crazy things happened like sleeping for 36 straight hours and my eyes wouldn’t stop moving. It was really interesting, but I survived.

I was directing the YSHS One Acts when the right side of my face went numb. One of my favorite interactions with a student:

Me: Yeah, I have Mary Jo Buttafucco face.
Student: Who is Mary Jo Buttafucco?
Me: Her face was paralyzed after she was shot in the face by her husband’s lover Amy Fisher...the Long Island Lolita. It was like 1992 or something.
Student: Jill, I wasn’t born until ‘94.

Having no energy didn’t make me feel old..THAT made me feel old.

I did play rugby that season. I really wanted to play, but could only handle 10 minutes, but the coaches let me play for those 10 minutes. I put all I had in those 10 minutes and was elated to be on the pitch. When my 10 minutes were up, I graciously walked off the pitch and straight to Coach Borg. I started blubbering and he hugged me. Through my sobs all I could say was, “I can still play!”

I did my first Dayton MS walk in April 2009 and raised quite a bit of money for my Team, Jill’s Jive Walkers. Julie came up with that name and I knew we had to use it since we kept singing the Jive Talkin song. We then had to come up with a team tshirt. I based it off of an interaction I had with Chrissy once. She asked what some symptoms of MS were. I responded with slurred speech, bad coordination, poor balance, frequent urination and poor decision making. Her response, “I’ve seen you like that at Peach’s numerous times.” I thought we were going to be the black sheep of the walk, but our tshirt took first place. MS staffers even wanted one for their office so I gave them an extra.

The front of the shirt had the following:

MS Symptom 

or

Night at a Bar?

Bad Coordination

Decreased Judgement

Difficulty Speaking of Understanding Speech

Dizziness

Double Vision 

Frequent Need to Urinate

Loss of Balance

Memory Loss

Numbness

Short Attention Span 

Slurred Speech 

Tingling

Vertigo

Walking Abnormalities

Weakness

“If I put a flask in my back pocket, no one will ask questions." ~Sandra Wells

Some of us had flasks in our back pocket.

The walk the next year was a little more organized thanks to KJ. The Dayton men’s and women’s rugby teams came together to raise money for the National MS Society and walk at the event. It was great to be surrounded by ruggers and their families. Even my family joined in on the fun. 

DARC walkers for the National MS Society

Awesome shirts created by the talented Renee

Best quote created by one of the greatest people ever, Nancy Tracey!!!

I have survived it with the help of friends who take care of my body and soul. I had the worst relapse out here in Oregon, but my family was only a phone call away. Joe offered to fly out to Oregon to check on me. Megan mailed me a package of goodies because she’s awesome. Jeff just called me to be a douche, but that made me happy.  

I have made some great Oregon friends who visited me even when I was at my worst. Having the relapse actually taught me that I do know wonderful people out here too. My roommate Eric fed me when I couldn’t cook for myself but he didn’t want to be a hydrogen atom with me. (I had some hallucinations. We laugh about them now even though I swear I'm having the black Jesus and that there are neighbor kids who mow the grass.) The man cave boys visited me in rehab and watched Police Woman of Cincinnati with me and made me laugh. Amber and Brittany brought me a Eugene Reign get well package and took me out for some Totchos. I am lucky to have people in my life that our truly selfless. I am thankful for my friends who never stayed away because it made THEM feel sad. An illness teaches you who is worth having in your life.

It will get progressively worse as I age, but a good attitude and an active lifestyle will slow that progression. Having close friends and a supportive family will help me tremendously.   There has been a lot of discussion in various MS forums that I have visited that talk about being single.  I feel I do not need a husband in order to cope with this.  I have the greatest support system that will help me with anything I need.  That means more to me than a ring.  Momentum Magazine, a publication for those living with MS, recently did an article about being single and afflicted with MS. It was a good article that confirmed my belief that being single with a chronic disease isn't the worst thing that could ever happen. 

My mother may not be with me now to help me through this, but the strength she taught me is what gets me through the hard days.  She faced adversity with wit and a smile.  I could feel sorry for myself.  I could be mad that it's not fair that I am burdened with this disease.  It wouldn't do me any good, so I smile and make inappropriate jokes because that's what my momma did.