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Interview with a Warrior: YOU DON'T WANT TO MISS THIS

Several months ago I was contacted by a lady who wanted to talk to me about her daughter's weird physical complaints. She was fairly certain the issue was MS, but was looking for face-to-face conversation with someone who lived with the disease.

We agreed to meet for lunch and a connection was made. Mom, daughter, and I broke bread and discussed this horrible thing called multiple sclerosis. I left that meeting full of sorrow for Jennifer, single other of her own child, knowing full well the fears that filled her.

Jennifer had a history with another neurologist, but made an appointment at the same clinic I visit and was diagnosed with PPMS. Jennifer agreed to be interviewed here and I cannot express my gratitude for her strength and hope for a better tomorrow.

Thank you, Jennifer. 


LISA: How long have you known about your MS? What were your initial symptoms?

JENNIFER: One day, my hand kept falling asleep. I thought it was weird, but I brushed it off. The next day my whole right side went numb. I went to the ER where they ruled out immediate things, like pregnancy and stroke. I was told to follow up with my GP. Over the following months, numbness and tingling grew steadily worse. I started having spasms in my right side, then my left started going numb, and I was getting spasms in both sides. I started having bladder incontinence. I started forgetting things. About four months later, when my GP had ruled out about 50 things, she started mentioning MS. It took another five months to get my diagnosis of PPMS, by that time I was a lot worse.

LISA: What is your biggest MS fear?

JENNIFER: That I won't get better. With primary progressive the best I can hope for is that I won't get worse.

LISA: What is your most annoying MS symptom?

JENNIFERThe brain fog. I miss trivia. I miss watching jeopardy. I just can't anymore and it makes me sad.

LISA: How do you respond/react to negative attitudes towards MS?

JENNIFER: The only negative attitudes I encounter are the whole you don't look sick mindset. I ignore it. If it's someone I know, who insists on telling me I'm fine, my temper comes out lol. Probably not the best way to handle it. I'm also a real smart ass.

LISA: Talk about your thoughts on alternative/natural/holistic/prescribed MS treatments. What, if any, have worked for you?

JENNIFER: I'm very much a woman of science. I believe in medical studies and what the doctors recommend. I don't judge others for using them, if it works for you it works for you, just don't tell me I can cure everything by eating 100% organic or with essential oils. I do take melatonin to help with me sleep, it seems to work most nights. My doctor had to really convince me to try it though.

LISA: How has MS changed your perspective on life?

JENNIFER: I learned a long time ago that plans for life are always subject to change. I had a "surprise" pregnancy at 21, a divorce by 25. MS is just another thing that's changed my life plan. It hasn't really changed my perspective so much, as it's just another thing I have to deal with. I was sick a lot as a kid, so doctors and hospitals are just the norm for me.

LISA: If you could talk to the MonSter, what would you say? What is your biggest sacrifice to the MonSter?

JENNIFER: Very strong language. What I've taught my kid are adult words. There's a time and a place to use them, and the MonSter is definitely an appropriate situation. I'd tell it to fuck off. It's taken my mobility, my independence. Summertime is coming, and I have no heat tolerance. I'm not gonna be able to take my kid to the park. It sucks. I hate it.

LISA: Anyone living with multiple sclerosis is an expert as far as I am concerned. Can you share some "expert" advice, suggestions, helpful knowledge, or discoveries with the rest of us?

JENNIFER: I've joined an online community that is very helpful. Find a support system. You're gonna have to ask for help. Don't be shy around your doctor. They have to know EVERYTHING. I recently started having bowel incontinence, as embarrassing as it is to be in diapers at age 30, but I told my neuro. You can't be embarrassed about what you're going through. The only people who truly understand are people with MS. Your docs want to help you. Don't be afraid of the scary sounding medicines. Don't get overwhelmed. It's so easy to get in over your head, just take it one thing at a time. Anxiety and depression are some of MS's best friends, and mental health is just as important as your physical health. I've battled the demons of anxiety, panic disorder, and depression for a long ass time. MS is just another goblin in my brain. They work together to bring you down, to try to control your body and mind. You have to fight back. It's not gonna be easy, MS is gonna give you some really hard days, but it will become manageable.

Multiple sclerosis (MS) involves an immune-mediated process in which an abnormal response of the body’s immune system is directed against the central nervous system (CNS).  The CNS is made up of the brain, spinal cord and optic nerves.
Within the CNS, the immune system causes inflammation that damages myelin — the fatty substance that surrounds and insulates the nerve fibers — as well as the nerve fibers themselves, and the specialized cells that make myelin.
  • When myelin or nerve fibers are damaged or destroyed in MS, messages within the CNS are altered or stopped completely. 
  • Damage to areas of the CNS may produce a variety of neurological symptoms that will vary among people with MS in type and severity.
  • The damaged areas develop scar tissue which gives the disease its name – multiple areas of scarring or multiple sclerosis.
  • The cause of MS is not known, but it is believed to involve genetic susceptibility, abnormalities in the immune system and environmental factors that combine to trigger the disease.
  • People with MS typically experience one of four disease courses (types of MS). There are over a dozen treatments to help modify the MS disease process. 

If you now someone with multiple sclerosis, be humbled, for we fight the fight every day.

During this month of MS Awareness, consider making a difference with a pledge to help Warriors progress in a healthy life.


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