It took getting back into the work and daycare/school mode to fully realize how relaxing our holidays really were. Despite feeling like our Christmas was perhaps a bit too quiet, the peacefulness created by the season allowed our minds to rest...we were able to stay up at night a bit longer knowing that we could wake up later and the pace of the day was set by our fun scheduled activities and Jack's nap rather than work. It wasn't until life's demands set in again that we realized how much of a break we really had. I wish I could hold onto that holiday/vacation feeling in the day-to-day. Yet, no matter how hard I try, the normal life stressors of finances and scheduling sneak back in. I don't need to feel like I'm always spending a week at the beach, but I am determined to deal with stressors in an efficient and mindful way this year so that I can let them go just as quickly as they enter my head. I'm happier without them. And that's what this year is about...being happy.
I use you, this blog, as a way to discover, feel, and relive life's happiness. I love the platform that this blog provides to let me share with you in an open and honest way. And, I'm thankful to all of you for being here to read about it. I've made little hints at a new part of my life story here and here, yet I did not feel ready to share the whole story, until now.
I have Multiple Sclerosis (MS). There. I said it. And, trust me, that took a while to get out. Here's my story:
In October, 2010, I began to feel a sharp pain in the right side of my neck which led to feelings of numbness, tingling, and weakness in my right arm. I dismissed it, thinking I had pulled a muscle after driving to Florida with Jack by myself to celebrate his first birthday and turning around often to hand him toys or snacks.
Once home in Atlanta, I tried desperately to forget about the tingling feeling, but instead it spread to my right leg and I found myself carrying Jack on the left side, afraid that I might not have the strength on my right to keep him from falling.
In December, still relating the numbness and tingling feeling to a slow to heal pulled or pinched nerve, I fell on my icy driveway in the early, dark hours of the morning. I was home alone with Sadie and Jack and I was scared. I knocked myself out with the fall and it shook me hard. Thankfully, I worked on the Neuroscience Floor at the hospital, so as soon as I got to work, I got a head CT. A few moments after the scan, I was paged by the neurosurgeon who ordered the CT, he also happens to be a friend, and he said "...good news is that there is no bleed." Relieved, I mistakenly interrupted him, thanking him for the help and nearly hung up the phone before he stopped me by saying that he and the radiologist saw a darkened area on the image that looked suspicious. I remember him saying that it was probably from a childhood fall, but that I should have a MRI to be certain. I nearly fell off the high stool I was sitting on.
Thoughts raced through my head...I had a one year old baby. I just went through brain surgery with my mom. I was terrified of the thought of a MRI. I read and then reread the radiology report. One of the impressions was that perhaps I had a childhood trauma, another that I have a demyelinating disease...I tried to push the thought out of my mind and move on. But, David knew I was scared...this was all happening too fast. It was too much. He abandoned the residency interview trail and drove home that afternoon, missing his interview at UNC.
My stubborn mind and determined nature pushed me forward through Christmas into the New Year and all the way into March. Then, I knew I had run out of waiting.
Much to my surprise, I revealed to the neurologist at our first meeting that the numbness and tingling were still there after trying so hard to block it out. After a complete neuro exam and a second look at the CT, he was convinced that I had MS. Yet, all I continued to hear from friends, colleagues, and David was...there's no way. I don't know if they were trying to be supportive or if they really believed that, but I felt alone knowing that I had been hiding my symptoms and feeling like it might be true.
I stubbornly put off the ordered MRI until April. I will never forget that day. It was Good Friday...how ironic. I was terrified. The MRI lasted over 90 minutes as they scanned my brain and cervical spine with and without contrast dye. For the entirety of the scan, I felt like I was floating on top of my body, thankful for my previous yoga practice and knowledge of deep breathing. When it was over, I was so far gone that I couldn't even speak. I know shopping does not help heal, but that's all I could think of to do. So, I stayed in my head and numbingly shopped, holding onto and processing my thoughts until I felt like I could drive home and talk to David about it.
At the MRI, I requested a copy of my images, but tucked them away for the Easter weekend. On Monday, I was nearly bursting with anxiety so I called a friend to ask her to take a look at the images. When I asked her if she thought it looked like MS, she slowly shook her head up and down.
I was back in the neurologist office the next afternoon. I didn't want to hear it, but I knew I had to. I sat alone with a stone expression as he confirmed my MS diagnosis, telling me that I had at least a half a dozen lesions in my brain where the myelin was missing. He suggested that I start interferon injections immediately, supposedly the standard treatment for relapsing remitting MS. Or, he politely offered, I could just get pregnant since pregnancy seems to put MS into remission, perhaps offering the best protection against the disease.
What? Another baby? Now? No way... I felt like shouting, like running away...my head raced, my heart pounded, I cried...a lot...and then I sort of shut down. It was the closest to depression that I have ever come and I stayed there for months.
I tried to learn more, but my research came to a screeching halt when the words across the top of the MS Society page read "MS stops people from moving. We are here to prevent that.". Those words invaded all my thoughts during both wakeful moments and in the dead of sleep. I woke up many nights with a start, crying and making sure I could, indeed, still move everything.
And, because I had no clue what else to do – I made plans to race in the MS 150 Bike Ride, because I wasn't "one of them," but this is a way I could pretend to be connected. And, I called my best friends. I shared in the only way I know how to...through tears and pleas for support. Then, I told my family. I will never quite forget the shock on their faces and the absence of their response as they struggled to swallow the news and understand how best to help.
After we moved and got settled in Seattle, I finally got an appointment to see a neurologist. I spent the summer struggling with the same numbness and tingling in my right arm, leg, and foot and a new feeling of numbness in my face. My Seattle neurologist ordered a second MRI that showed that 2 new lesions have grown since April which may perhaps explain the increase in symptoms over the summer. He also consulted an MS specialist.
I started my treatment last week with a weekly injection into my thigh muscles of interferons. I responded very well to the first dose and experienced none of the dreadful flu-like side effects that I have been trying to prepare my mind and body for. This left me hopeful.
Life has a way of teaching you about yourself. During this past year, I have discovered that I am strong. Yet, I also need people. I need people to check in to see how I am feeling. To ask me about me. I can be incredibly headstrong, but I've learned to slow down, to take time for me, and to ask for help. I've learned to make decisions that are GOOD for US, not just to follow the expected path. I've learned that I'm a good wife and an even better mama. I’m still working on my other relationships and learning how to be more patient and understanding; I think I'm making a lot of good progress.
I've learned to seek out happiness. To hold on to those things that make me happy and to stay there. But, I've also learned to take it easy...not to beat myself up when the day doesn't quite go as planned, when I didn't relish in every moment with Jack. Because, I know that people say, "You only get this time once. They grow up so fast.", but in all honesty, sometimes "this time" is hard. Really hard. And, some days, I feel the most freedom and relief when Jack is sleeping soundly in his crib. I'm not wishing this time away...no, not at all. But, I'm also not going to let the sentiment of "making the most of this time" leave me feeling stressed, crazy and incompetent. Every day brings great moments, funny moments, sometimes sad moments, and often frustrating moments. When life throws me a punch, I'm trying to roll with it to get by. But, when life feels good and right, I try to savor it and slow it all down.
I think that we have a way of creating happiness in our own situation. Our situation is unknown and that is the scariest part. I could be walking until I'm gray and 99 years old, or I could lose motor function in a few years and be dependent on a cane or bound to a wheel chair (I hope someone will volunteer to make me a cane full of bling and sass!). We don't know what the future holds for our family...who does?... but I plan to embrace this Life we have and live it well, hard and real.
Writing here, sharing a bit of my life and nourishing you with photos and recipes of good food helps me-- as does being outside, deep breaths, exercise, a peaceful home environment, caring friends, water in all forms, sharing a funny moment or a snuggle with Jack, and having date time-out and at home-with David.
Thanks for reading and helping me on life's journey. I feel an enormous amount of gratitude for this space and the people that take part in it with me. xxo.