It has been a while since I have posted. I feel obligated to keep this blog going so I can help as many people as I can to find the second chance that I have found with HSCT, but that ends up being part of the problem. After so many years of fatigue, numbness, depth perception issues, cognitive problems, vertigo and many other symptoms of MS, I have been feeling so good that it’s been hard to sit still long enough and work on this blog. I have still been busy spreading the word and have had a couple of people I know (and a few I don’t know) head to Chicago for transplant. I have also been working in other ways as well to get the word spread. I firmly believe where much is given, much is required and that is why I know I need to keep the energy of spreading the word.
I wrote an entry a few months ago that I still haven’t posted that talked about riding in the Bike MS Pedal Los Pueblos event back in August. I won’t get into that too much right now because I still plan on releasing that entry. I will say that it was over 100 miles on the bike the first day and close to 60 on the second. I felt amazing the whole way. I rode hard for the names that I carried on my jersey. I rode inspired by the good health and healing that I’ve been feeling. I talked to many along the road about my transplant and ended up recording the fastest overall times on both days. Bike MS is not by any means a race, but I wanted to ride strong and test myself to see if I was really feeling as good as I thought.
While I have been back on the bike and running again, I ended up winning a duathlon in November with the fastest overall bike time and second fastest run. I finished it in second place overall. I won overall last year on this race, but unfortunately I am still only about 90% and that proved to be the difference. I’m looking forward to the rematch next year already.
Another opportunity was when I rode in the Tour of Las Cruces in October. It was a 100k bike ride around Las Cruces. This event is put on by my cycling team, Zia Velo. Before my transplant, it was my goal to finish the 30 mile route of this event. By the time October had rolled around, it wasn’t even a question that I would be doing the longer distance, because I had already done several rides over the 100k distance and a few over 100 miles. IT FEELS GOOD TO FEEL GOOD!
Every once in a while I still get a good reality check. I was told when I was discharged from Northwestern that I would still get my old symptoms from time to time if I get sick. I’ve experienced this a few times now and it’s pretty dang scary! The funny thing is that I notice the return of the symptoms before I even realize that I’m getting sick. The left side of my face will go numb or I will notice that my left side is feeling weak and then a day or two later, I’ll come down with a cold, or the flu. Fortunately, because they warned me about this, I have kept myself from completely panicking. All symptoms that have returned are all previous things that I have felt in the past. If I were to experience a new symptom, then it would be time to panic and head to the emergency room.
Despite knowing this, it is still nerve racking when it happens. I’ve been so spoiled by how much I have improved that when it all comes back, I can’t get over how many things I had trained myself to deal with. Learning to deal with things one at a time over the matter of years, you don’t even realize how many things were wrong. When they all come crashing back at once, it is a startling experience. It really makes me thankful for HSCT and all that it is doing to heal me. When the old symptoms are back, it is almost impossible to sleep having to lay there at night with tingling feet and nerve chills zapping up my spine and neck! Thankfully as soon as the cold is gone the MS symptoms leave too and I’m back to feeling like a normal human being again!
2015. MOST EPIC YEAR EVER.
It’s funny how much can change in a year. As 2015 came to an end, I had lots of time to reflect with Liz about how much as happened over the past year. We spent New Year’s Eve at my mom’s house with some of my family, just like we did last year as 2014 came to an end. I had a flashback of talking to Liz about how we had no clue if I would even be accepted for the transplant in Chicago. Liz was in the early months of pregnancy, but we didn’t know anything about the kid that was coming our way. Even if we were accepted, we had no clue if the insurance would cover it or how we could possibly afford to take so much time off work or how any of this would possibly work out. I remember saying that in a year we would know the answer to all of those questions and what a weird feeling it was to know that as the next year rolled in, we would have the answers to all of those things. One thing I remember very strongly was that despite how much could go wrong, I felt a huge calm feeling and somehow knew that it would all work out.
What an amazing feeling it was to spend New Year’s Eve with Liz and my family again and see us all still standing and feeling healthy. It was great to know I was killing it again on the bike. During the midnight hour, I was holding my new son Luke as the clock counted down and the ball dropped.
I was remembering how amazing Liz was in Chicago running all over the place to take care of me in the hospital, and I also thought of our daughter Olivia that couldn’t come near me. I remembered Liz taking her to the top of the parking garage roof so I could see her run around from a distance. I was thinking of my sister Laurie and her family that took us in and how they spoiled us while we were there, saving us thousands of dollars. I thought of all of the people that came running to our aid through GoFundMe. I thought of Border Patrol having a fundraiser BBQ. Throwing up all morning on my birthday because chemo and bone pain. Trying to take a shower and fighting to stand up because I was shaking so bad but needed to feel like I was winning somehow. It was awesome to remember people from all over jumping at the Bean with “Go Michael” and #Kickit” signs.
And then the memories of the hospital: Walking laps in the hospital just before midnight, so I wouldn’t fail my daily goals. Staring at Lake Michigan from the spinning bike while sweating because of my gown, gloves and mask. Collapsing and blacking out during my morning vitals and getting grounded to bed the rest of the day. Blood and platelet transfusions. The best part, getting out of the hospital and coming home. Then I thought of the horrible pain of trying to ride a bike again. The fact that my heart rate was totally maxing out at physical therapy while doing easy exercises. Baby Luke being born. Liz getting hospitalized with complications weeks later. Getting my strength back. Getting stronger. Feeling better and better.
I could go on and on about all the things we went through after the hospital, but I won’t. All I can say is that it hurt. Bad. Was it worth it? Totally. To be feeling this good this soon after all that, was worth every drop of the blood, sweat and tears that I shed.
2015 was an epic year. I learned more about myself and my family this year than every other year combined. I think a lot of people don’t think this was as hard on me as it was on other people, because I’m out there doing things most people with MS and this treatment are not. I promise you, it has been hard for me. Maybe even harder, because I have tested the pain and pushed against it. Hundreds of hours I have spent suffering because I want to win. I want to play with my kids and be healthy as long as possible. It’s easy to say this, but doing it hurt. A lot. It still hurts. It is getting better. Every day it gets better. Every ride, every run. Every step.
I’ve been taking part in my yearly ritual of watching all the Rocky movies this week. There is an awesome quote in the latest movie “CREED” when Rocky is coaching Creed in the final fight of the movie that I relate to me and Liz this past year. “They don’t know what you’ve been through and they sure don’t know what we’ve been through….I want you to go across this ring and you’re gonna knock that S.O.B. down! Can you do it?”