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 ā 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. Iām 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.
Steph, I’m glad you shared your story here… I think being open and honest about our lives is such a hard thing to do, just know you are MUCH loved and SUPER strong! We’re here for you always! XOXO
Kristin, You have most always been there for me…and it is SO appreciated. Thank you for everything you do. xxo
You wrote that so well! We miss you here! Keep in touch.
Thanks, Amy. Happy to see you here and reading my little space. I miss you guys too…I hope all is still well at GMC!
I am so proud of you. You are an inspiration to many, but especially me. I have the best sister! I love you and am here for you always.
You are the greatest too…so thankful that we have each other! I’m always relying on you and just knowing you would be here whenever I needed you to be, helps me every day.
What a wonderfully written, humble, honest blog.Ā I love reading your words.Ā Glad to have caught up on where this is for you…I think the journey for all of us is finding the peace and fulfillment in today.Ā Sending you lots and lots of love.Ā Please let us know the next time you do an MS event so we can give to the cause.Ā
Thank you for your kinds words, love, and encouragement. Your words are always an inspiration.
Steph,
Thanks for sharing. Very inspiring ā puts a lot of things in perspective.
We miss you guys. Hope we get to see you later this year as planned.
Thanks for reading.
We miss you guys too! Hoping for a joint family vacation soon…!?
Just wanted to let you know that you are in my prayers and you are an amazing person for sharing your story via your blog! You are a GREAT friend, wife, and mama and thanks for all your advice while I have started this mommy journey too š Keep in touch!
Haley
Hi Steph,
So very brave of you to share your story. We find ourselves building relationships with people we don’t know through this blog world. I think I may have found you on twitter and decided to read your post TODAY. Of course it has been popping up in my email everyday, but I chose today to read it.
Being in the health industry, I am fascinated by the power of nutrition and the power of our bodies to heal. This story of Dr Wahl gives hope to many and I wish you hope in her message too.
If you are open, take a look at this amazing journey Dr Wahl has experienced through the power of nutrition with her MS. Simply AMAZING!
Her book:http://www.amazon.com/Minding-Mitochondria-2nd-progressive-wheelchair/dp/0982175086/ref=sr_1_1?ie=UTF8&qid=1324321579&sr=8-1
and last but not least a great blog to support the nutrition piece
http://www.nutrisclerosis.com/Knowledge-Center.aspx
much love and health to you and your journey.
Lori
Hugs. I was wondering when you’d “come out” on our blog. Your post is incredibly insightful and honest. I love that you’re willing to open up and I hope you feel supported here and through the community you’ll find online with other patients and their families. I’d like to do more to support you and will look for opportunities!
Your blog is such an inspiration. It’s so honest and makes me feel like I’m not alone in my worries, stresses, aspirations, etc. Thanks for sharing this! Thoughts are with you š
Thank you, Helen! It’s inspiring to me to have such a wonderful support system of all of you!
hey Stephanie! aunt Karin showed us this blog entry at thanksgiving dinner of all places; but, I’m so glad she did. you are an amazing writer–so eloquent and so brave. jack is beautiful and we can’t wait to see you all at Christmas!
Hi Rachel,
Thank you for your kind words…they mean a lot to me!
Looking forward to seeing you during the Christmas holidays too!
– Stephanie
Stephanie, I was forwarded this blog by our mutual friend Annette. I, too, have just been diagnosed and am struggling to be as positive as possible throughout the acceptance process. It’s reassuring to read through your thoughts as I have had a lot of the same ones. thanks!
Hello! I’m glad that you found your way here.
This is such a personal journey with a need for time to reflect and feel, but also for a support system to be there when you want to cry, laugh, share…
I’m happy you found some peace in my writing. I’d like to start writing some more MS-themed posts, so if you have any ideas- toss them out to me.
I wish you much strength and love on your journey.
Take good care.