Where I was a year ago today….

December 18, 2012….I can still remember the phone call from the nurse at my neurologists office. It was by far the most surreal moment of my life, which is saying a lot considering the hell I had been through for the 6 weeks prior. “The results came in, and as we expected, your official diagnosis is Multiple Sclerosis. We need to set an appointment for you to come in and meet with Dr. Birkman to discuss treatment options…” (At this point, she started to sound like the teacher on Charlie Brown). I knew this was my diagnosis already. I had been pretty sure for the past 6 weeks, and honestly, had feared this diagnosis most of my adult life. I don’t know why, but I always had this feeling, this hunch that I would be diagnosed with MS. Still, hearing those words, hearing the nurse confirm one of my biggest fears, was heartbreaking and I had no choice but to absolutely melt down. I thought I had cried all I could over those six weeks. I was SO wrong. I could cry a lot more.

When I think back, there were earlier signs. But it all really began on November 7, 2012. I was at work noticed that my vision was getting really weird. I could see my computer screen fine, but when I looked off into the distance I was seeing double. I’d concentrate and focus and it would be fine. I thought maybe I was tired. Maybe I’d had too much caffeine. I had taken Benadryl, maybe that was a side effect. I walked to the bank across the street, talked to my friend Jan, acted like I was fine. When I tried to come back across the street, I could hardly walk because I was seeing two of everything. Identical twins walking side by side. Matching cars at the stop light. Four entry doors.

After a call to Jeremy for a ride and trip to my optometrist, who dilated my eyes and told me that everything looked fine, and yes, I was probably tired and stressed, he sent me on my way and set a follow-up visit for the following week. Jeremy drove me home and I decided I’d just go to bed.

I woke up the next morning with my double vision so bad that I could not walk or do anything with both eyes open. I looked in the mirror and while my right eye was looking back at me, my left was looking to the far left. Now, we panic. Now, we freak out. Now, is when I experience the first legit panic attack of my life (certainly not the last).

Off to the ER we went. I had a piece of paper covering my eye because the double vision was giving me vertigo so bad that I was feeling really ill. I remember the lady in the triage of the ER asking why I was there; I uncovered my eye and said “well, I don’t typically look like this.ā€

I went into survival mode immediately. Tried to use humor as a buffer between me and what was actually going on. I’d watched enough Grey’s Anatomy to assume that what I had was probably a brain tumor. The ER doctors feared the same and after drawing what must have been 20 vials of blood and giving me a shot of valium, they sent me for an MRI.

The MRI showed lesions in my brain, typical of MS. I’m not going to throw a bunch of medical lingo in here because I can’t remember it AND it’s really not necessary. Plus, I was on valium and all Jeremy and I were able to hear that day was “probable MS”. They told me there’s a lot of good information on the internet and started me on IV steroids immediately. I remember saying “at least it’s not cancer.ā€ I later regretted that statement because some cancers can be removed…

I went home and I cried. How do you tell your mom, you best friends, your coworkers where you are? How do you even explain what is going on with you, trying not to fall apart out all the while convincing them to remain calm? How do you ever prepare yourself for this type of situation? I’ll tell you now, you don’t prepare for it. You have NO idea how you will handle something like this. I promise you, you are either much weaker or much stronger than you think you are. You meet the real you for the first time ever. And it’s shocking.

I laid in bed for a week waiting for my vision to come back. I took my Ativan, cried, prayed and slept. In that order. No one knew if my vision would return to normal. My neurologist gave me about a 75% chance. 75% is not enough when it comes to your vision. I shopped online for eye patches because there was a 25% chance that I’d always have to wear one. I didn’t know if I was ever going back to work. I didn’t know if I was strong enough to deal with this.

Ten days after that initial ER visit, I woke up in the morning to Sampson licking my face. I looked at the clock and could read it without covering an eye. I looked at Sampson’s face and there was only ONE. I could see the ceiling fan; I could walk without running into the wall. I could see. I spend the majority of that day with the windows wide open, sunshine pouring in, thanking GOD.

There’s a shocking lack of advocacy for newly diagnosed patients. And by that, I mean no advocacy. They tell you to look online, there’s a lot of good information about MS online. What they SHOULD tell you is do not look online. When you are scared, freaking out and diagnosed with a chronic illness that you know nothing about, the LAST thing you should do is start Googling. Seriously. This was just before Thanksgiving last year and I was left feeling scared, doomed and alone. If it weren’t for Jeremy, I would not have made it throught this. I was only able to tell my close family and immidate circle of friends. I didn’t know how to tell anyone else. I had people checking on me all day every day. I still felt more alone than I had in my whole life.

The next couple of weeks were spent in and out of the neurology clinic and Hospital. I had vision exams, so much blood work, more MRI’s, and my least favorite, the spinal tap. (I’ll talk about that in a whole ‘nother post that will be titled “How I met Pete Glassbrenner”). The stress of all of this brought on my second exacerbation, which started with my legs feeling weird to losing all sensation on the left side of my body. From the top of my head to my toes, I felt numb. Like your cheek does after the dentist. I also felt like my entire left side was connected by one tight rubber band. Waiting to snap at any minute. I went to work every day feeling like this. Trying to pretend it wasn’t happening. I floated through the holidays, not enjoying any of it. I don’t remember any of those days in November or December except for December 18th. December 18th, the day of my diagnisis, otherwise known as the day I knew my life had changed forever. The day I will never forget.

Eventually the second round of steroids took effect and I regained the feeling in the left side of my body. I slowly begain to feel closer to my normal and I started treatment, which I’ll talk about later. And today, one year later, I am feeling really well. No one would know that I have MS unless I told them. I’m working, active and have a newfound respect for life. I have a lot of stories to tell you about the last year. A lot I’ve wanted to mention but couldn’t because I hadn’t shared the first part of the story.

One of the toughest things about this diagnosis is knowing how and when to disclose. I didn’t keep this from anyone for any other reason than I just didn’t know how to say it. Now I do, the elephant in the room has been exposed.

Peace and love,

The Original Heta


9 thoughts on “Where I was a year ago today….

  1. Wow, Heather — thank you so much for sharing this with me, with all of us who care about you. I am so glad you are doing well, and I can’t even imagine how terrifying this diagnosis must have been for you. I cannot BELIEVE your doctors told you just to go look on the internet — there is so much BAD information out there, along with the good, and as a librarian I would NEVER tell anyone with a new medical diagnosis to just “go online.” I’m so glad you have such wonderful support from Jeremy to help you through this. I will definitely be following your journey and I am proud of you for “coming out” about it. Sending you lots of love!

  2. You are AMAZING, beautiful, kindhearted, funny, sincere, giving, loving, truthful, silly, genuine, strong, courageous, brave, smart, and witty. And that doesn’t even begin to describe you!! I’m so blessed to have you in my life!! Love you forever to the moon and back!!!!!! Xoxo

  3. There are no words sometimes Heather. Your struggle to find them ended beautifully. This was well thought out and written and made me cry like a baby, not because I feel sorry for you, but because you are amazing. You are and always have been one of the strongest, funniest, and most genuine people I have had the good fortune to know. Let me know if I can ever do anything to help. Anything.

  4. You are an inspiration to me and so many. You’ve always had such great spirit and wit. I can’t imagine not having such a wonderful friend to look up to. You really are one of the most amazing women I have ever had in my life. I only wish our Shenanigans could be more local. I love you so much my dear friend, I think of you so often, and am here when you need me. Love you! Crys

  5. I am so glad you’re talking about this. A diagnosis of an invisible illness is so uniquely difficult – people can’t really see how it affects you, and you simultaneously want to appear strong and resilient, but also have them understand how much it really impacts you. You’re sharing your story with such grace and honesty, Heather. Please keep it up, and if we can do anything for you, please tell us.

  6. I think you are amazingly strong and are an awesome inspiration. I am so glad you are sharing your journey because there are so many people that can find inspiration and hope in your honesty and positive attitude !!

  7. Thanks for sharing such honest words. You are a strong and beautiful woman. I hope I can stay a part of your life and listen to your stories.

  8. Support and resources should be made a staple for the newly diagnosed. I was diagnosed with MS a few days after Christmas in 2003. I can totally relate to not hearing a thing after my neurologist told me and my wife I had MS. Thanks for sharing your story and I look forward to seeing how your journey continues.

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