Phase II: Living

After getting past the initial shock of my MS diagnosis and the beginning of my treatment (Phase I), the next thing that I have to do is learn to live with my MS. For non MSers, it is impossible to understand the difficulty that this brings. You have to learn how to do some mundane daily tasks while lugging around your MS right behind you. MS touches every part of my life and is on my mind constantly. Maybe that is because it is still so new to me, but it is rare that I ever “forget” about my MS. It simply is a part of who I am.

So how do I adjust to this new life? It’s not that I am shy about my disease, or embarrassed when new issues arise. It is simply that I cannot shed my MS symptoms and they are omnipresent.

While walking Jack, I take notice of my sore legs. While at a concert, I have to sit down and not dance with my friends. While walking through my company office, I am uncomfortable with my instability and balance problems. While driving a car, I worry about my legs going numb. Signs of my MS are everywhere that I go and in everything that I do. Sometimes I can ignore it, most times I cannot.

It has become obvious that living with MS comes with a whole new set of problems. While I am hopeful that my medication is working, no medication will alleviate the constant fatigue that I endure. Something as simple as walking to my car now takes an extra, concerted effort. The best friend to a person living with MS is rest. Unfortunately, as a 23 year old living in an active city, rest is something that is often hard to get.

When I talk to other MSers, they are shocked that I only get 7 hours of sleep a night. They are astounded that I work all day and then go out at night. After all, I am a young man who enjoys sports, the outdoors, snowboarding, dancing, and so many other activities. I cannot yet sacrifice this lifestyle that I love. A sedentary lifestyle is one of the scariest prospects to me. Even to others living with the disease, I am a rare case – somebody who defies MS logic.

Most likely, though, I won’t always be the exception to the rule.

Sooner or later, I will have to help my body by giving what it needs – rest. Sure, sleeping till 2pm on the weekends is a good start, but regular rest will help my body stay in its best shape for years to come. Despite my fatigue and balance problems, it is hard to remember to constantly rest and let my MS-riddled body re-energize.

Maybe it is because I am talking to so many other people living with MS who are in wheelchairs, or use a cane, but I am determined to stay active and not let this disease run my life. There is a fine line between pushing yourself and being stupid. I guess that is the essence living with MS.

No Bologna: Conquering my Belonephobia

After getting over the initial shock of my MS diagnosis, I faced with some big decisions. One of the most important was deciding which MS treatment was best for me. On the same day of my diagnosis, my doctor handed me about 10 pounds of information for all of the. There are currently 4 main drugs that are used to treat MS. Those drugs are Avonex, Copaxone, Rebif and Betaseron. I told him I would make this decision easily. I asked which of the drugs are available in pill form. He simply answered, "None. They are all self-injected."

What?

What most people might not know about me is that I also suffer from Belonephobia - the fear of needles. Ever since I was a little kid, a trip to the doctor's office was the most feared day of the year. As a child, I got blood drawn from a finger prick which most of you have probably experienced. The average kid cries a bit out of fear, but once the nurse gets started, the majority of the population calms down. Not me. Man, did I cry. The whole time. Every time. I'm pretty sure that my mom still has my butt cheek marks ingrained on her thighs from sitting on her lap during those visits. I don't even want to think of the fingernail marks that I left from digging into her arms... This was nothing that a lollipop could fix.

The problem for me isn't the blood. The problem for me is the needle itself - that clear, sharp deliverer of pain sent by the nurse to penetrate deep inside my finger. I could swear that I felt it hitting bone. Although the puncture wound from the needle was easily covered by a Scooby Doo band aid, I could have sworn that I was bleeding out. And don't even get me started on all of those necessary childhood vaccinations...

It took MS to help me conquer my fear. It wasn't because I wanted to. Trust me - if there was an oral medication, I would have told the doctor to sign me up right then and there. However, knowing that giving myself shots was the only way of getting healthier was my inspiration.

As I was researching the various meds that my doctor had suggested to me, I looked intently at the needle size for each drug. Also of importance was the injection areas and frequency. Some drugs were injected directly into the muscle (intramuscular) - meaning a deeper injection (and bigger needle). Others were done just under the skin (subcutaneous). I knew that intramuscular was out of the question; as were the drugs that were taken every day. Some drugs offered an auto injector that facilitated the process.

I began to narrow down my search and eventually decided on Rebif. This medication called for a subcutaneous injection 3 times per week. Additionally, it came with an auto injector which was a big factor in my decision. I got set up with the medication and it soon arrived at my house. Now came the hard part - injecting.

The first time I took the package of needles out and looked at them was a very gut-wrenching moment. We had a stare-down with each other for about 20 minutes - I'm not kidding. I looked at the needles as the only thing standing between me and a healthy life. I was going to do this. But, having never injected myself with anything before, how was I going to do it?

The wonderful thing about Rebif is that the company arranges to have a local nurse come to your home to teach you how to use the auto injector and get comfortable with the injections. My big day was set up for a Saturday, January 5, 2008 at 10AM.

In the days leading up to the appointment, I had a lot of time to think about the road that I was starting down. A lifetime of injections - 3 days per week? That's 144 shots per year! I was shaking just thinking about it. Assuming I take the meds for 20 years, it would be almost 3,000 shots. I wanted to back out.

That Saturday came and I was a nervous wreck. Luckily, my best friend Jesse and my sister Staci had agreed to be there for the session and lend their support. When that knock on the door came, I was petrified thinking about what was to come.

The nurse was a middle-aged woman named Lisa. We started going over the basis of the shots - and she had some water-filled syringes that we used to practice on a plastic flesh looking piece. I did really well with those. After all, it was much easier to give a fake injection since it's never touching your skin.

After a few tries with the practice needles, and allowing Jesse and Staci to give it a try; it was time. I had the auto injector set out on the table and asked her to show me how to load it for the shot.

"You aren't going to use the auto injector," she said. "You're just going to use the needle."

"What?" Why the hell would I do that? The auto injector is why I chose Rebif to begin with! It was important, she said, because if the auto injector ever breaks, I know how to give a shot manually.

Now I was scared. And pissed. I didn't think that I was EVER going to have to watch the needle go into my skin. The auto injector was supposed to take care of it. I just push a button and I'm done.

Despite giving the nurse a piece of my mind (and attitude), my efforts were futile.

She got the first Rebif-filled syringe from the package and handed it to me. I looked over at Jesse and Staci who were watching apprehensively from the couch next to me. "You can do it," they told me.

I took a deep breath and closed my eyes. "It's just a fear", I told myself. "The needle isn't going to go as deep as you think. If you want to beat this MS - this is what it is going to take."

With that, and the help of the nurse, I cleaned the skin on the back of my arm with an alcohol wipe. I took the needle from the packaging and held it against my arm. I could feel the tip of the needle on my skin and it made me shudder. Deep breath. With a quick push and a slight sting, I gave my first injection.

Instantly, I smiled. I did it!

Every injection day since has become easier and easier. Staci and Jesse have even helped and given me a couple of them. I can do them on any of the sites now including my arms, thighs, stomach and butt. My mom is still in disbelief that I have come so far in getting over my fear of needles. Lucky for her too, because I don't think she could handle me sitting on her lap anymore.