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.)
😦 Can I just say that having had crazy health issues and pain problems in the currently and in the past, I totally hear you on #2. So true.
I’m still reading & look forward to more of your posts. And yeah, last year sounds like a rollercoaster year, I hope 2012 goes much more smoothly & includes lots of fun things too!
I’m sorry you have to go through this at all, but I love your perspective. I’m thrilled to hear you plan on posting more!
keep being strong, girl! wish you a good 2012, anyway.
what a diagnosis….my father was ill with MS, too.
don`t ever loose your “loving-the-life” !!!!
best wishes, eva
I’m very glad you are back to blogging. You and Kara are two of my favorite people and we’ve never even met. Lots of hugs and good wishes.
i just love that your post just before this one was the half-marathon. You didn’t get MS overnight. You ran a half-marathon with MS.
TAKE THAT, MS!
TAKE THAT!
I adore you.
And I’ve missed you in the blog world. Please don’t go away again.
ever.
Oh, what tough news. Wishing you all the best, and hooray for starting off the new year with good insurance, advanced meds, a positive attitude, and the support of people who love you! I’m rooting for you.
Good Grief! I’m very glad to hear you didn’t ‘go fetal’. The world needs you ‘moving and shaking’, and showing us all HOW IT’S DONE!
I’m really glad to read you today and especially to find out you are fine. We have to appreciate health when we have it because it is pretty fragile. I did not know that you are Kara’s sister! Happy New Year 2012 and I look forward to reading your knitting news 😉
My best friend’s mom has had MS for 30+ years. She lives a full, active life, and she manages her MS holistically. Sometimes she has to rest and take it easy, but she’s a go-getter most of the time. My best friend’s sister, Faith, is named so after her mom carried her full-term with no complications while having MS. The doctors told her to give up or that she wouldnt have a healthy baby, but Faith is alive and fine, so ha! I say that to be an inspiration and an encouragement. She’s an inspiration to me as an example of what you can live with and conquer and deal with without giving up enjoying life as you’d like.
You are pretty amazing. That is all I have to say. Well not all…you have a great outlook on life, and I have always thought you were super fabulous. Thanks for sharing your story, prayers your way as you begin your journey.
Kasey M.
I just checked in yesterday and so am very happy to see you again Sending warm wishes your way
I still think you are great! Really I do. But not because of this — you are just great.
I love you. Like, a crazy amount.
Great attitude 🙂 Glad to hear from you again…I’ll do the same, one of these days 😉
Laurel is right. If you can do a half-marathon, with the positive attitude you have, you’re going to be as great going forward as you were before. We are all cheering you on as you start your treatment. I’m wondering if yoga will help a little as it is so great for your spine and flexibility.
If you get a chance, watch the movie Race Across the Sky (2009 version, w/Lance Armstrong). It’s about the really tough mountain bike race in Leadville, CO. (Kara will love watching a bike movie with you!). There’s a woman racer in there with MS who does the ride every year; she is so strong and awesome; it’s amazing she can keep up with the training needed to participate. I want to be just like her when I grow up, LOL.
I’m so glad to see your post, Erin. I’ve missed you, and I hope you’ll post more.
i’m still here and i’ve missed you! (not that i can say anything about being a good bloger lately — i’ve been pretty absent too.)
happy new year my love! it’s gonna be a great one!! love you much!!
Wow, you have such a great attitude about this that “I’m sorry” might be the wrong thing to say. If anyone will be amazing with MS, you will. All the same, that stinks, and I’m sorry. I’m glad you’re back though. I’ve been enjoying your intros in your magazine – I figured maybe you were too busy with work to be blogging (know how that goes!), but it’s nice to see you posting here again!
Hey lady, I’m so sorry you have to dal with this but I know you’ve got a great support system with your family and if positive energy from the blogosphere can help at all mine is headed your way!
1. You ARE amazing
2. MS better watch it!
3. You are so loved by me.
4. Please keep posting.
Sorry to hear your news, but thank you for sharing your story. When I was diagnosed with MS four years, my first thought was “oh no, I won`t be able to knit…!“. But now I`m on treatment, my symptoms are mild and I’m knitting more than ever. So glad to see you back blogging!
never given up!! (nor will I!) Wish I could give you a huge hug… and with that said – where’s your knitting! 😉
So sorry to hear about the ms but glad that you were diagnosed quickly and correctly. This is your blog and you should post about whatever you want. Glad to see you back.
So glad to see you back! Sending a million positive vibes your way….thanks for speaking out the truth and taking it all on with such an amazing attitude!
Erin, you have always been the example of a strong woman to me. Truly. And, this post, just proved that ten-times over. Your perspective is amazing. I have run along you before, and I can’t wait to run along you again! (And, I’ll even let you throw-up in MY hands this time!)
Aw thanks Lacey – both for the compliment and the throw up offer. That is true friendship. 🙂
Erin
You and Kara are such rockstars. I’m glad you’re facing this with tenacity. From what I know of you, that doesn’t surprise me. I’ve been wondering about you, and thinking of you, and I was happy to see your blog pop up in my reader today. I look forward to more from you, with or without craftiness!
Erin, I’m so glad your back in blogland. I really wasn’t sure what to write when I read your post – days later, I’m still not sure what to write. I don’t normally leave many comments to begin with, on topics that are much easier to respond to. But, I want to let you know that I’m thinking of you and providing whatever positive vibes I can in your direction. I love your attitude! It will continue to take you far.
I’ve wondered how you were and if you just decided to walk away from being on-line. I read Kara’s blog just to keep a little connection to you two. It’s great to see you back here in blogland and to know you’re doing well. You have so much love and support in your life and a great attitude, too. Sending positive thoughts your way.
Hello! I have read your (and your sister’s) blogs for a long time (caught me, I also knit…and I (also 30-something) was also diagnosed with MS this year (September)! After a scary couple of weeks of blurry eye-site in one eye, MRIs, a diagnosis that I didn’t really know what it meant, and then a lot of reading and a great neurologist, I feel like I’m in a mostly good place with something totally manageable. As I read your post I guessed your diagnosis (don’t worry, I’m qualified, I watch a lot of Medical dramas) as I lost feeling in my left leg over the holidays. Apologies if this sounds like a ‘one upper’ or a ‘meeeee toooo!’ which can be so annoying— but it was with the comfort of familiarity that I read your post that reminds me that a) not just me; b) really, it’ll be OK. Anyway. I can’t tell if I feel silly writing this, or if its a good thing. So, I’ll click “post comment” and send you the best!
PS. Season premier of Downton Abbey was THE BEST.
Oh my goodness – I had no idea you were going through that!
The guy I am dating has MS, too. I have tried to avoid looking stuff up online because I know that I will probably become obsessive about it.
This is one more reason you and I need to catch up!
I’m so glad you are blogging again, I’ve missed you terribly. Your blog and Kara’s blog are top on my list of favorites. Actually, I need to update mine as well….
Can’t wait to see what you have been making, and I’m so happy that you are dealing so well with the MS.*
**ok, I can’t seem to type anything that doesn’t sound like a hallmark card, please forgive 🙂 the gist is that I love you.
I have had to take a break from everything but the necessary, but am slowly gaining control of my life (or so I think?!) and am just reading blogs and perusing pinterest again…whoa i have a lot to catch up on!? thanks for all the details…oh how we love you Erin! thank goodness for freinds are their prodding!
Thank you for sharing. I too took a break from blogging in 2011 and almost did not come back to blogging myself. My reasons were similar to yours, in that life happened and I was dealing with some medical issues. In my case it was infertility, years of treatment, a failed IVF cycle early last year, and a diagnosis that I would not have my own biological children. In the end everything turned out ok. I was filling out international adoption papers when I became “spontaneously” pregnant on my own. Funny how life works. Anyway, there is a silver lining in all clouds. I do believe that. When I returned to my blog I did not go into my whole infertility store. I had probably some of the same worries as you surrounding sharing of personal information. I do see the value in sharing and the support the knit blog community provides. I am glad you are back and wish you the very, very best.