I know some people have been wondering what's up with me. Life has been a little unsettling lately. I am staring MS squarely in the eye, dealing with some of the stuff that it can bring, but not letting it get the better of me, although some days I feel like it is trying.
Let's rewind however many years ago it was when I suddenly couldn't see out of my right eye anymore. I always likened it to wearing sunglasses, really dark ones, on just my right eye. I made an appointment with an ophthalmologist pretty quickly who asked me a myriad of questions, are you tired? Well yeah I was the mom of a two year old and worked full time so yeah, I'm tired. Do you have any tingling in your arms or legs? I did have some on my right side when I thought of it, but I had a desk job and just thought my leg and foot were falling sleep a lot. Do you have any numbness? No, why do you ask? Why are you asking me all of these questions? The Dr. said he suspected I had optic neuritis and that didn't typically occur on it's own but seen frequently with people who have MS. He sent me for an MRI. I can remember when they snapped this helmet looking thing over my head and being pushed in a dark tube. I can remember music playing over the loud banging noises. Rod Stewart's gravelly voice crooned, If I listen long enough to you, I'd find a way to believe that it's all true....I can still hear it in my mind's eye. or ear as it were lol!
Anyway, I had to wait like a week (this was about 25 years ago, the Stone Age for technology like MRIs I guess) for the results and I remember calling my doctor for them. He just so happened to be away on vacation for the next two weeks but his receptionist assured me his associate would be happy to review my results and let me know what they were, hold please. Nice doctor, picks up, introduces himself to me and I can hear him rustling through my file (yes, they still used paper files back in my day) and making small talk. Oh I see you have optic neuritis, you went for your MRI last weekand it says here-----how quickly can you come in to our office? I'd rather discuss these results with you in person was the next thing I heard. I felt like I just went down the drop on the Terminator when he said that.
I knew what he was going to tell me. So I ask my boss if I could leave, tears all welled up in my eyes. The only thing I knew about MS was what I saw in grade school when we would do fundraisers for the MS Society. I was going to be in a wheelchair, I was going to be an invalid. After I saw my pseudo-opthamologist with my mom in tow because Brad was stuck at work, he said if I was his daughter? He'd have his family practitioner do a total physical, see if there could be anything else going on. MS doesn't have a test to determine if you have it but rather a battery of tests ruling out anything else it could be. I asked him one question, am I going to die? He said we are all going to die, but from MS, the likelihood was no. Ok, I relaxed just a little.
When life gives you lemons, squirt someone in the eye ~ Cathy Guisewite
I swear I was blindsided. How could this be happening to me? I'm young, have a toddler. When Brad finally got home of course he was upset. We tried to make sense of things we had no idea how to understand so we did the only thing you could do to obtain knowledge before the internet; we headed straight to the library. Yes, a library. Complete with the card catalogue (that always excited me when I was little and had to use it) does anyone else remember the dewey decimal system lol, and us photocopying information from books that we found on the subject. I felt a little better when I read it didn't necessarily mean I wouldn't be able to walk or I wouldn't be able to see out of that eye properly again.
I did make an appointment with the best neurologist for MS in our area after seeing our family practitioner. He said it appeared I did have MS from "the scleratic lesions on the white matter of my brain" they saw in my MRI plus all of the other tests they did. We weren't going to treat anything just yet. The only thing available at the time was steroids and seeing what they did to my dad I wasn't too keen on taking them to be honest. He also said he wasn't going to officially diagnose me until I had another exacerbation somewhere else in my body for insurance purposes. He didn't want me to get denied with a pre-existing condition. Why thank you kind sir. I appreciated that.
It took about six months and my vision returned. No meds needed, my body healed itself. I was done being angry at the body I felt betrayed me. I started making a bucket list of things I wanted to do though. Being diagnosed with a potentially debilitating disease will do that to ya I guess.
When life gives you lemons, chunk it right back ~ Bill Watterson
A lot of life has happened for us since. I won't bore you with all of the details, just the highlights and some bucket list items thrown in. Let's see there were three more kids, two new houses, countless foster beasts, how many businesses that ended up with us owning the Ice Zone and SkateNation Plus, plus now 321 Fitness (that's our Bodpod) ooooo and a grandson as the cherry on top. There were sprint triathlons, Olympic distance triathlons (NYC Tri being my favorite) culminating with me doing Ironman Florida. Let's toss in a myriad of 5Ks, 10K's, 10 Milers and Marathons. And who could forget my swim from Alcatraz?? Or how I had been keeping it real with Crossfit the last five or so years after I got burnt out from triathlon training. I can remember speaking to the Owner of our Box before I started and telling him I had MS. That I wanted to do Crossfit in case, God Forbid, it decided to rear it's ugly head. I wanted to be in the best shape of my life to tackle it head on. I toned my body, got it strong, got myself mentally tough. I laughed at doing 160 pound back squats, rep 205 for my deadlifts, clean and jerk 110? Still laughing, this is awesome. Watch me bench press 130 pounds no problem. Toes to bar, yes please, I could do pull ups, I wanted to do muscle ups some day, I could row like a beast, run like a beast watch me crush a wod, a hero workout. I loved it. Still laughing. MS be damned, look at what I am doing!!!
And then, it happened and I stopped laughing.
I dropped a bar going overhead on a lift and damn near crushed my head. What was with my left hand? Running? Why is my left leg dragging? Box jumps? Nope, I almost killed myself the last time I tried them. Lunges, I am tipping over, never mind doing them with any kind of weight. Yeah, I tried to modify my workouts, but things kept getting more and more difficult to do. I couldn't stand after a hard work out, friends and Brad would bring me ice and ice water to help cool me off so I could move. Anything that required balance was out of the question. I remember the last workout that I had modified and struggled through so I could do it, and someone commenting on how they admired me for still trying to work out. That was it, game over. I have worked out in my garage ever since. Don't need your pity. I am ok, and will be ok, my mantra being fore front in my mind--there is still a ton I can do, there is still a ton I can do. I was strong AF, I don't want anyone's admiration for struggling through a workout. I want to lift, run, box jump, burpee like I used to. I can still do a lot. A lot more than many so I guess I need to suck it up buttercup.
Let's skip that record needle one more time to now, and why I am inviting you all at this peek into my life with MS. It is happening, that next exacerbation that I thought I had outfoxed, out maneuvered, out run, out Crossfitted? It looks like it is here. Or might be. Otherwise my feet are numb for no reason. Or my legs feel like lead for no reason, or I am dizzy to the point I will not let myself drive right now for no reason. Or I have this awful brain fog for no reason. Or I am so exhausted by the end of the day, I mean bone crushing lassitude, for no reason. Misery loves company, so come join me hahaha!! Actually, that's not it, because I am honestly not miserable. Frustrated maybe, miserable not so much. Like my breast cancer scare I have decided to blog what's going on. It was cathartic for me to blog through it, so I guess I am trying to cope one of the best ways I know how.
I went for an MRI again, this time I had the help of Ativan to keep me from freaking out after they immobilized my head and kept it from moving and stuffed me in the tube for an hour. I had the most pleasant dreams, one was my dad was rubbing my feet and telling me I was ok and not freak out, the other was my dogs were talking to me lol. Kind of made me sad when my dogs started talking because then I realized my dad wasn't really there and it was all a dream, or was it, but that's a blog for another day.
I have a follow up with my neurologist Wednesday. Hopefully to discuss treatment options? I am at the modern day version of a library as I type (the internet is a blessing and a curse for real) and have been educating myself as much as I can about the drugs there are to treat MS now. Grateful there are choices. More than just prednisone, but they all come with a hefty list of side effects, none of which are too pleasant. Yes, I'll take one brain infection that almost always causes death for the win!
I know, like my breast cancer scare, that this is going to be ok. I've got my family by my side, Brad not letting things be anything other than ok. Choices of medications, and a lot of determination to get back to Crossfit and the rest of the things in my life that make me happy. Ain't nobody got time for this...
“I believe when life gives you lemons, you should make lemonade…and try to find someone whose life has given them vodka, and have a party.” ~Ron White
1 comment:
I love you. We will get through whatever together.
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