Steph's Story
Hello everyone! I’m told you would like to know why I raise money to fight MS. It’s simple. MS is a devastating disease that affects not only the individual diagnosed with MS, but their entire families. I was diagnosed with MS in October of 2001. Like most people you speak to that have been diagnosed with MS, I was blindsided with this diagnosis.
I have always been a clumsy person, and I didn’t participate in many sports, except swimming. That summer I was diagnosed, however, a girlfriend talked me into playing softball. Not just on one league, but three. We played on a women’s team and a co-ed team that summer and a co-ed team that early fall. During an August game I tripped over one of the bases (they call me Grace!) and hurt my left leg.
Two weeks later the right side of my body from my waist to my toes went numb. A few days after that, I was numb from the tip of my head to the end of my toes on the right side. I couldn’t feel anything, but I could function like normal. I didn’t know what to think!
They thought it was a pinched nerve. They gave me a prescription to help alleviate it, which didn’t help. Then a test was done to find where the nerve was pinched and it was found that I did not have a pinched nerve. My family doctor sent me to get an MRI and set me up with an appointment to see a Neurologist. When I met with the Neurologist, he said that I needed a deeper MRI. After the second MRI I was told that he thought I had one of three things: Lupus, MS or something else that I can’t remember, and I needed to get a spinal tap done. I thought I just had a sports injury here … what happened?
The spinal tap was a nightmare for me! The first time I had it done at the Neurologist office and it was missed three times. I was then sent to the hospital to have the spinal tap done under a fluoroscope. I had to remain flat on my back for a certain amount of time to try and eliminate the chances of getting a headache from the spinal tap. Well, I received the headache anyway and had to receive a blood patch to fix this issue. When I started this I thought I would be down three or four days and ended up missing two weeks of work because I was so sick from the leakage in my spine.
Once all the tests came back in I was told that I have Multiple Sclerosis. In retrospect, once my family doctor and I spoke about this in further detail, I had been experiencing symptoms off and on throughout a few years before I was diagnosed. They just weren’t debilitating enough to cause such deep tests. This time MS screamed at me to pay attention!
My Neurologist stressed that it was very important to be placed on a therapy immediately. I remember him telling me that my brain was on fire and it was extremely important to do what I could to fight it’s progression. At the time I didn’t understand what “brain on fire” meant, much less what I should do for therapy. He explained the differences between the therapies, which were all different shots – four different kinds of shots. He wanted me to make a choice between the shots … You’re dealing with a person who was EXTREMELY afraid of needles. When your dentist chooses to drill on your teeth without Novocain because you pass out when he comes at you with the needle, you know you have an issue with needles. This Neurologist was telling me the only therapies that were available were SHOTS for heaven’s sake! All I could think was, “What am I going to do … there’s NO WAY I can do this!!!!” But the Neurologist stressed that I had to pick something before I left because since the MS was so active being that there were so many lesions all over my brain, it was too risky not to be on a therapy. He also stressed that it takes about a month for most insurance companies to accept the medication and then you have to get it shipped to you.
So, in my haste to make sure I was medicated, I chose Avonex, the intra muscular (EXTREMELY large needle) once a week therapy. Once a week is what got me. I didn’t care about side effects at the time. Heck, you hear about side effects every time there’s a commercial on a drug. Who gets all the side effects anyway? Well, in this case … ME! My Neurologist explained that it takes a few months for your body to accept the drug, so the side effects are a given until the adjustment period is over.
My life consisted of having my husband give me the shot late on Friday night, so that the side effects would wear off while I was sleeping. Well, it hurt like heck, and immediately made me sick. I was sick and laid up in bed almost every weekend, would drag myself to work on Monday and start feeling better by Wednesday night. Thursday was usually pretty good, and then it would start all over again with the next shot on Friday. I didn’t have a clue if what I was feeling was MS or drug side effects. I just knew that I could barely function normally. I don’t know how many times my daughter would act crazy just to make me laugh so that I wasn’t so down about feeling so badly. My family got me through the emotional trauma of this. I have never relied on two people as much as my husband and daughter at that point.
I have met many people who do very well on Avonex. Just because my body could not handle Avonex doesn’t mean it doesn’t work for other people. Remember, every person is different, and symptoms vary between patients. If this therapy works for you … STAY ON IT! If it doesn’t, please speak to your Neurologist so that they can help you choose the one that’s right for you.
After a year of Avonex, my Neurologist ordered another MRI. Then came the dreaded day that his poor nurse called me to say that my MS was worse and that the Neurologist wanted to place me on Copaxone. OK, remember I freaked about a once a week shot? Well, just imagine the conversation this poor nurse had to have with a hysterical Stephanie when she found out that Copaxone was a DAILY injection. I wasn’t listening to the fact that it was subcutaneous (just under the skin into the fatty tissue). I only heard DAILY. She pleaded with me to try it. If I felt better, then it would be worth it.
I learned how to do the Copaxone shots myself using the Autoject. It really wasn’t as bad as the intra muscular shot from Avonex (the needle goes into the muscle). After about three months I felt like myself again. I’m not saying that I don’t feel like I have MS. I just don’t hurt as much and I’m not sick all the time. I no longer have to plan around my MS. I can do whatever I want whenever I want to do it. My MRI’s have been the same or better every time after that first year.
This year, I finally took the next step. I learned how to do my injections without the Autoject. Now I can give myself a shot while looking at the needle. It was a huge step for me. I know, I’m a baby, but I’m proud that I achieved this step. I might have MS, but MS will never defeat me. Because of MS, I am strong.
I fight MS every day, with everything I have. One thing I don’t have is a lot of money to be able to put anything into research to find a cure. This is why I walk. This is why I raise funds. I do work as an advocate to help make money to pay for my shots. I do try to make fundraisers be educational so that people who don’t know about MS will learn what it is like for those who deal with MS every day. Until there is a cure, I will continue to fight MS with everything that I have!
I further challenged myself this year by not only doing the Northeast Indiana MS Walk, but by also doing the Challenge Walk in Minnesota – 50 MILES IN THREE DAYS!!! If I can fight MS daily, I can walk 5o miles in 3 days. My challenge to myself is to remain strong, and keep fighting MS every day.
My challenge to you is to please help us fight MS!
