Limitations

One of the greatest challenges of MS is the unpredictability and uncertainty of what is to come. The effects of multiple sclerosis vary based on which part of the brain or spine is damaged, or more specifically where damage to the nerve-protecting myelin has occurred. As a result, symptoms can be radically different from patient to patient. There isn't any typical MS; everyone's MS is unique to them. It's a very difficult disease to understand. But as you live with it, you need to understand your MS.

Since my MS mainly affects my mobility, I have to be aware of accessibility. I have to be more prepared than before. This takes the spontaneity out of going out. I need to know whether the places that I go are handicapped accessible or not. There’s nothing worse than getting somewhere and finding that you can’t enter because of a stair or stoop. I also need to know whether the restrooms are handicapped accessible or not. This small detail to some is of utmost importance to me.

I am lucky to live in a condo that has a ramp and elevator with a courtyard in a neighborhood that is vibrant and active. I also live near BART (Bay Area Rapid Transit) that can get me around town pretty easily (as long as the elevators are working!) I am also fortunate to have friends that understand my limitations and make a point of coming to me and not letting me feel too isolated. As does my husband and family.

Overall though, I think that there's a limited understanding of what it's like to exist in a less-abled, wheelchair-bound, body. This needs to change. Thankfully, Jason DaSilva of AXS (read: access) Map is bringing us a kind of Yelp for people with disabilities. Creating this viewpoint for those without disabilities is crucial to making a change in society. The disability rights movement needs to gain momentum.

I am thankful that my MS has left my mind unimpaired and I can get around in a wheelchair. But it needs to be easier. There is a fight to be had.

What Next?

In some ways a diagnosis of MS was a relief. I finally had an answer to the myriad of symptoms, aches, pains, and “what the hell’s” I was experiencing. But now I had an incurable disease. What do I do next? I was given prescriptions for drugs that would treat symptoms I was experiencing such as spasticity in my legs, bladder issues, and nerve pain. 

The overall issue, however, was what could we do to stop the progression of MS? There are quite a few DMD’s (disease modifying drugs or DMT’s disease modifying therapies) on the market for Remitting Relapsing MS. These seek to reduce the frequency and severity of flares or exacerbations. They range from subcutaneous (under the skin) injections or intramuscular (into the muscle) injections to oral medications to infusions. You can find a full list here. It is up to you and your doctor to decide where you’d like to start. I strongly recommend doing a DMD because progression can be slowed.

I have tried almost every version of a DMD and unfortunately none of them worked for me as I progressed from RR MS to SPMS. There really aren’t any treatments for progressive MS, although research and clinical studies are making advancements. My neurologist and I discussed them and she prescribed 2 for me. Fingers crossed!

My MS progression began with breaking my ankle in 2010. The trauma, along with the sedentary months ahead, brought upon my most serious exacerbation to date. Once my ankle was healed and I was diagnosed, my mobility went downhill. I started using a cane regularly then moved on to forearm crutches and a scooter. I am now in a power wheelchair. I don’t walk anymore. My legs are heavy and my feet are like bricks. I exercise them but need to remind myself that MS is a neurological disease not a muscular one. I sometimes feel that I could have prevented all this. Could I have? My head says no. My heart… well I try not to dwell in the past ('try' being the operative word). Life is ahead of me today.

Diagnosis

I was diagnosed with MS in September 2011 at the age of 33 which is common. Most people are diagnosed in their 20s – 40s. I was initially diagnosed with Remitting Relapsing Multiple Sclerosis (RRMS) which is characterized by clearly defined attacks - also called relapses, flare-ups or exacerbations - of worsening neurologic function. These are followed by partial or complete recovery periods (remissions). In retrospect, and hindsight being 20/20, I was experiencing symptoms up to 10 years prior. After my first ‘flare’ in 2001 when my legs couldn’t bear my weight, I experienced episodes of weakness, numbness, and unexplained pain. MS is difficult to diagnose:  There are over 50 symptoms linked to MS, and each person develops symptoms differently. Many of these symptoms mimic problems that occur with other diseases. I was misdiagnosed with Psoriatic Arthritis and was treated by rheumatologists for years – specialists often have tunnel vision and don’t look outside their field. Who knows what an earlier diagnosis may have led to – everything or nothing.

In 2013, my doctor casually said, “Since you are Secondary Progressive…” I must have had an expression of shock on my face because she said, “Now don’t go home and mope about it!” My neurologist is smart and my advocate – she just isn’t the most tactful.  But I don’t need tact. I need intelligence and someone willing to go to bat for me, which she does. So in 2 short years, my diagnosis advanced to Secondary Progressive Multiple Sclerosis (SPMS)  - which means that the disease will begin to progress more steadily (although not necessarily more quickly), with or without relapses. Most people who are initially diagnosed with RRMS will eventually transition to SPMS.

There are four main types of MS. RRMS, SPMS, PPMS, and PRMS which you can read more about here.

My MS is unique to me. As Margaret Mead said, “Always remember that you are absolutely unique. Just like everyone else.”

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.