It’s funny how time goes by and my body starts to heal, I began to forget the pain I used to live with every day. It’s not that I am miraculously recovered. I have and will always have MS, but the miracle I was blessed with did way more then I asked for. I wanted to stop the profession of my disease. I haven’t had any MRIs since the transplant, but I have faith that my 1 year follow up will show it did its thing. However, when you have HSCT, you spend the first months of recovery worrying about different things. Like getting sick, getting shingles, medication side effects, thyroid levels and much, much more. I myself am a champion worrier. I was so concerned about getting back to work, being a mom and doing all the things I have not been able to do that I didn’t even notice. I never noticed that for the first time in many years my feet were hot, then cold, then hot again…. My arms didn’t hurt and I haven’t had pins and needles every night. I didn’t realize that the eye pain that dominated my life was suddenly gone. I never noticed the horrific spasticity in my back and neck become less and less common. A very dear friend and mentor used to tell me I spent too much time looking at the road ahead and not enough time looking in the rear view mirror. I never noticed these changes and more because for 7 months, I was stuck looking at the mountain of recovery and treatment side effects in front of me and never took time to look in the rear view mirror. While on vacation this week, I forced myself to look back and smiled thinking of how far I have come. Now, I’m not saying I am in tip top condition. I still get headaches, I still have foot drop at times, I am exhausted… a lot. But I do it to myself. I don’t know how not to overdo it. I want to do great at all things and I hate letting people down. I know in doing this, I let myself down. I will try to work harder at this and now I’ll tell you why.
This week, we went on our first vacation since HSCT. We went on a cruise for my mothers 70th birthday. My brother, sister in law, nephews, and my sister in laws parents joined my parents and I. Knowing the size of the ship, I rented a scooter. I was determined to lay low. I did and we had a great time… Despite the fact that I barely left the boat for fear of getting sick and my nephew Connor sprained his knee on the wave machine.
After the cruise, we drove up to Daytona to visit my mothers childhood best friend and her husband. We had a wonderful visit and then drove to Orlando where Rosemary got an amazing surprise. Nona and Uncle Dan flew out to meet us. I would share the video, but I left my cell phone in the bathroom of the Orlando airport and haven’t replaced it yet. Rosemary is (in the words of my nephew Ryan) a Harry Potter addict. She started reading the books, and I promised that if she finished the first 3 books I would take her. We picked a great time to go, because the park was at one of its least crowded points in the year.
It was a wild and fun 2 days, but sadly it ended for me in a horrific cold and an abrupt end to my 7 month time in menopause. The cold however, is the cold to beat all colds. The cold that made all the previously mentioned MS pain rushing back with full force (this is what happens when a post hscter gets sick.) It is pretty bad and nothing is helping the pain. It does however force me to look in that rear view mirror, remember again how very blessed I am and want so much to be healthy again. But, I got the point…. Ready to be post cold now.