World MS Day

Today is World MS Day: “a day that brings the global MS community together to share stories, raise awareness and campaign with and for everyone affected by multiple sclerosis.” I started this blog as a release, to help me cope with my MS.

I think the most important thing for me is to stay connected – be it with family, friends, a support group, or on social media. It’s easy to feel sorry for yourself. I threw myself some pretty grand pity parties. (I still do. MS sucks.) And while you may want to hide out for a while, do it for only a little while. Reach out. I’m a social person and when I stopped going into the office to work from home, I started to feel awfully isolated. I am happily married to an amazing man but I do like to see other faces.

One of the first things I did after my diagnosis was tell my family and friends. I wanted them to know what I was dealing with. I also searched for a support group in my area and found a wonderful one in the East Bay – MS Fight Club. There’s nothing like sharing your story with people who fundamentally understand MS. I learn from them and I hope they learn from me.

My MS affects my mobility so I have an almost constant reminder of my disability but I find it crucial to do things that are unrelated to MS. I go to Pub Trivia, I have game nights, I have potlucks. I am thankful for my friends every day who care about me enough to ask about my health but also treat me the same as I ‘used to be.’

On this World MS Day, let’s think about MS and also forget about it for a while.

MS?!

What do I do next? I decide to be proactive and schedule appointments with the neurologists and figure out what to tell my family and friends.

I’m a talker and I have always been pretty open with my friends and family about myself and what I’m going through. They know me well enough to know there was something wrong anyway. I found talking about it was the best way to begin the coping process (Although I think coping will always be a struggle for me – it’s not easy to realize the course of your life has changed forever.) Since my MS is visible –it mainly affects my mobility so you can see that I am limping, using a cane off and on and/or resting a lot – disclosing my MS was a relatively easy decision for me to make. Telling others is an extremely personal decision. Follow your heart, your head, and this.

I am lucky. I have a compassionate and educated group of friends and a loving and supportive family. While they are concerned and sympathetic, they leave it to Adam and me to do what we need to do. They know I will share when I am ready. When you have been diagnosed with MS, you are the one experiencing the symptoms but your diagnosis will affect those around you too. I remember quoting Russ Feingold with his “Forward!” slogan.

Ahead is the only real place to go so I see a neurologist at UCSF to complete a few tests to confirm my diagnosis – I have another MRI, I walk, close my eyes and balance, get my reflexes checked, etc., and finally have a lumbar puncture (spinal tap). It is hard to diagnose MS. While there are tests to guide the doctor towards an MS diagnosis, it seems to be almost more productive to rule out all other possible diagnoses.

So now I’ve really got MS.

The Beginning of My MS Story

Sometime in 2000, I woke up and found that I could not stand. I was alarmed, to say the least. Adam, my then boyfriend and future husband, took me to the emergency room where I was barely examined and prescribed Vicodin. Which I took because what 22-year-old would say no to Vicodin? I didn’t feel satisfied with this evaluation but doctors knew what they were doing, didn’t they? Adam bought me the generic old person cane from Walgreens and I was slowly able to walk again. Over the years, I would experience weakness, pain, and numbness in my extremities. Somehow, I ended up seeing a rheumatologist. Over the next 10+ years, I listened to my various rheumatologists and took what they prescribed. 

In late 2010, I broke my ankle quite hideously. I ended up with a plate and 10 screws holding it together. I started to see a physical therapist that got me walking again. In 2011, my husband finished graduate school at UC Berkeley. His mother and my family were here in the San Francisco Bay area to celebrate. One day, while we were walking to dinner, my sister, Diane, noted that if she hadn’t known that I had broken my right ankle she would have thought there was something wrong with my left leg. Later, I relayed this to my PT. He watched me walk and said, “Curious. Very curious. This may be neurological. Have you had an MRI?” I got an MRI of my lower back. After it was examined, it was determined that a disc was pressing on a cluster of nerves or something. I was referred to another doctor who would give me an epidural. During this time, I hoped that it was just a spine issue. I saw this doctor and he examined me quite abruptly, took a look at my MRI, and said, “I don’t think you need a shot. I think it is MS and you should see a neurologist.” I started to cry and he left the room. He didn’t have the best bedside manner but I respected him because he could have easily given me the epidural  and been done with it. But he took the time to diagnose the problem instead of just getting rid of me. He gave me the names of two neurologists and sent me on my way. Before this I had spent years suffering, never really knowing what was wrong with me. I knew it wasn’t necessarily rheumatological but I didn’t know where else to turn. I am forever grateful to the PT who found me curious and to the spinal surgeon who took the time to examine me outside his particular realm of expertise.

I knew I had a scary and long road ahead of me now that I was diagnosed with MS but there was calm in finally knowing.

What’s in a name?

I decided to name my blog Peculiar Ideas About Beauty. This is a line from one of my favorite books, The Time Traveler’s Wife by Audrey Niffenegger. I worked at an independent bookstore in Portland, Oregon from 2000 to 2004. The owner of the store would often let us borrow galleys of upcoming books to read. He believed that his employees should read books in order to help customers. While I disagreed with the owner on a lot of things, I respected this. I chose to read the galley of The Time Traveler’s Wife. At one point in the novel, Henry introduces Claire to his father and friend. Claire exclaims that she finds crows beautiful and Henry’s father responds,” You have peculiar ideas about beauty.” This struck me not only in terms of the story but also as a fact of life. Don’t we all have peculiar ideas about beauty, really?

I created this blog in 2012 after I was diagnosed with multiple sclerosis (MS). I thought I would need an outlet for all that I was going through. The most important thing for me at that time was finding a name for this blog. It needed to be special to me. That was all I was able to do then. Strange that it took me over 3 years to write my first actual post. I could say that it took me a long time to process that I had MS. I could also say that I wasn’t ready to tell my stories. But I don’t think I will ever be truly ready to process that I have MS. For me, and many, multiple sclerosis is a crazy fucking ride.

Scientifically, MS is a disease in which the immune system eats away at the protective covering of nerves called myelin. It is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body. Personally, it has changed my life in every possible way.