Through the life of my cousin Hollie Miller, I have an insight to multiple sclerosis I would not have gained otherwise. Such an inspiration in our lives, she has faced her illness with perseverance. I asked that she share her experiences with us through this short interview.
RMH: How did you discover you had multiple sclerosis?
HM: Six months after my twins were born, I started having annoying and infrequent hand spasms. We thought it was a pinched nerve so we let it go. Then I had my gallbladder removed. Everything went great until my body decided it didn’t like the dissolving stitches. It went into a rebellion, causing an allergic reaction and a high-powered immune response. I started having massive spasms that involved my right side. I lost the vision in one eye completely. I started being unable to walk at times, couldn’t grip a glass with my right hand and the pain was excruciating. Every time my body would relax or sleep, the pain and spasms would start.
One day I thought I was having a stroke. My right side locked into a series of painful knots, my arm bent back on itself. I stopped being able to speak clearly and my head exploded with continual pain. I went to the ER and they did a CT scan only to discover brain lesions: too confluent and too congruent to count. The ER doctor told me I had the brain of a 60 year old woman. I cried. I’d suspected after doing my own research, but had dismissed it until I heard the words.
I made an appointment with my regular doctor, who called a neurologist who scheduled me for monthly visits. However once they got that CT scan, they scheduled me immediately with their most aggressive specialist. I had every test known to man: MRI, Spinal Tap, EKG, etc. Then it was confirmed. I had MS. I started treatment two weeks later.
RMH: How do you cope with it?
HM: Sometimes when I get too hot, I lose my eyesight. I have absolutely no balance now so I try to walk on even grades and avoid the heat. I have to plan family time around what I can and can’t do and I have to be sure to listen to my body because if I don’t I’ll be made to listen to it tomorrow! Really I just try very hard to keep living my life.
RMH: How has it both negatively and positively affected your life?
HM: Negatives are just that negative: balance loss, visual impairment, heat intolerance, exhaustion. You deal with them the best you can. I avoid situations that put me at risk.
Positives? I’m not very certain there are many to be honest. It has made me more in tune with my body, how I feel and how to treat it. It has made me slow down a lot and take stock of what’s around me as I realize that my quality of life might not always be as good as it is now.
RMH: What types of treatments have you explored and which did you choose?
HM: There are two main schools of thought on treatment of MS that have been approved by the FDA. The first feeds the disease a decoy so that it doesn’t attack the myelin. The second knocks your immune down to nothing so that your body is too busy fighting the real deal to mess with your nerves. Since I don’t like the idea of feeding the beast, I chose the latter.
For the first few years, I took Avonex, a once weekly self-administered intramuscular injection. I had no troubles besides flu-like symptoms for a few hours after taking it. However, it never really stopped the progression of disease completely.
A year and a half ago, I was given the opportunity to participate in a study for the newly approved oral MS medication Gillenya. I’ve been with that ever since. It is a scary drug as it increases the incidence of skin cancer, drops my immune down to .25% of the general populace and can make people’s hearts stop, but the convenience is supposed to outweigh the risks. Well, that, and it has seemingly stopped my course of disease from worsening.
Author’s note: Despite her daily battle with multiple sclerosis, Hollie has found innovative ways to share her creativity through photography. You can see her works at http://www.facebook.com/TheHollieMiller or http://www.TheHollieMiller.com.