So I didn’t mean to take a blog break. It is true that my crafty productivity has gone down quite a bit which is the reason for spotty posting in the first half of last year but then a lot of life stuff has been happening and frankly, I didn’t know how to proceed. Part of me wants to share every detail of my life on the blog. Then there is the other part of me that gets worked up over being too vulnerable on the internets. So I put off posting. Next thing you know it is 7 months later.
Why am I posting now? Well, my sister Kara basically told me I am not a blogger anymore. That just didn’t sit right with me so here I am. And after thinking about my reasons for having a blog, I realized I wanted to share and record my story. So here goes…
About six months ago I woke up to numb feet. It was strange but nothing too concerning because I could walk just fine. It was just weird. As the week progressed the numbness started spreading up my legs. About 5 days in, the numbness was at my mid-thigh level. It was super strange. While at the gym that week I was talking to a friend about how weird my legs felt and that I knew something was wrong. She promptly told me it sounds like a symptom of diabetes. It didn’t matter that she followed that statement up with “but you don’t have diabetes”–in my mind, I was as good as diagnosed.
Since it wasn’t going away I went to instacare. Instacare sent me to the emergency room. The emergency room admitted me to the hospital with a diagnosis of Guillain–Barré. (Yeah, I had never heard of it either.) As I was being wheeled up to my hospital room I couldn’t help but feel sheepish as I peeked into the rooms of my fellow hospital mates and saw legit sick people. I kept thinking “I must have explained my symptoms wrong.” Kind of like in the movies when sane people get checked into mental institutions…THAT is how I felt.
So there I was on a hospital bed feeling really silly. So silly that when my friend played hangman with me in my room, the word she chose?…hypochondriac. (We both thought that was pretty hysterical.) The reason they needed me checked into the hospital was that GB can spread pretty quickly and if it spreads to your core then you can stop breathing pretty fast. They woke me up throughout the night and made me blow into this contraption that gauged my breathing. The next morning I met with a different doctor who started to doubt my diagnosis as he felt my symptoms were not completely consistent with GB.
After physical therapy and a 2 hour MRI I was starting to actually feel like I belonged in a hospital. The doctor came in and informed me that as he suspected, their earlier diagnosis was not right. Instead, it was pretty clear that I have Multiple Sclerosis .
For those who remember my previous fundraising efforts, my brother also lives with MS and for that reason I was a little surprised by the news. MS does not have a strong biological link so it is not common for siblings to both have it. When I first heard the news, my immediate thought was purely superficial. Something along the lines of, “great, I’m never getting married now.” I looked over at my Mom (who was thankfully visiting me when the doctor shared his news) and she maintained a pretty stoic face until he walked out and we shared a moment of emotion together. These were the only tears I shed that weekend as I pretty quickly got into a good head space about the whole thing.
I was released from the hospital that night and spent the next few months waiting to see a specialist and figuring out the right treatment. I am not yet on a therapy because I was under my work’s super economy insurance plan which didn’t cover “specialty medication”. I was gratefully able to switch plans and with the dawn of a new year am ready to start on the road of treatment.
I realize that was super detailed and maybe more than you wanted to read but I felt the need to record the experience before it gets too far in my memory.
With this experience, I did learn some things about myself and life in general:
1. I have amazing friends and family. Those who did learn of my situation immediately came to the rescue with love, support, and any practical needs fulfilled. It is overwhelming to be in a position of receiving so much love and charity and it made me want to be a better and more thoughtful friend in return.
2. Stay away from chat and message boards when it relates to a medical condition. You will always hear the worst case scenario stories that will make you want to crawl into the fetal position. Just trust me.
3. The big thing with MS is that you don’t know how it will affect you or how severe it will be. In addition, the drugs they have available now are pretty great. Who knows what other advances will be coming down the pike? Thus, there is no point in being depressed and obsessing over a future that is not determined yet. (I think this perspective can apply to lots of things in life.)
As of now, I am doing really great. I feel mostly normal and only deal with numbness when I engage in high impact activities like running or jumping. My balance is not great but I don’t know if that is MS related or just because I am clumsy. But really, I am doing great.
So there you go, my big story. I am not telling you this so you will be sad or tell me how great I am or so that a bunch of people feel sorry for me. In fact, that is mainly why I haven’t blogged about it to this point. So really, no need for any of that. (You know, if anyone is still reading my blog and/or this post.) I just wanted you to know that I am still here and still have things to share. I do hope you haven’t completely given up on me.
Talk soon. (I promise.)
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