Hey, remember me? It has been a couple of weeks since my last post. Nineteen days exactly since Stephen’s last stem cell treatment. Aaaaaand, I know you are dying to ask the big question! “How does he feel?” Well, nothing major to report as of yet. He is feeling the same for the most part, BUT it is still early. His doctor said to watch for improvements anywhere from 2-8 weeks. It’s important for him/me to be realistic. He isn’t going to just jump out of bed one morning ready to do a triathlon; hence realistic expectations. The changes will be subtle and improvement will be progressive. He’s watching for improved balance and an overall increased energy level. It seems hard to understand how he will measure those things from one day to the next, but it’s also hard to explain in words how the MS makes him feel overall. So I’m trying not to ask him daily, “how do you feel?” I said I was trying – didn’t say it was happening.
He’s following the doctor’s orders. Cleaned up his diet, eliminated alcohol for the time being, continuing his physical therapy and so on. He went to the gym with me last night for the first time. He won’t say it, but I know it’s hard for him to put himself out there at the gym. But he did it anyways. Every time will be easier and despite what he may think or feel, no one is watching him. Except me of course. Part of the protocol is to increase his strength and muscles. His PT focuses more on stretching and balance but not necessarily strength training. So we have to do this together. Pretty sure he hates me being his trainer….this needs an emoji!
I failed to mention on my last post that he got sick on our last day in Panama. We are almost 99% sure it was food poisoning. What are the odds? Don’t answer that. It was touch-and-go whether or not we were going to make our flight home the next afternoon. And when I say touch-and-go I mean I almost left him there. Kidding! Kind of. He will tell you I am the WORST nurse when it comes to this (pukey) kind of sick. No exaggeration. I called the doctor immediately to make sure this wasn’t a reaction to the injection and she assured me this was not a side effect; just bad luck. She sent some anti-nausea meds to the hotel and we were able to make the flight. That is the thing with MS that most people may not know. It is super hard for his body to handle things like food poisoning, or a stomach bug, common cold or fever. We are a pretty healthy family overall. He rarely gets sick but when he gets anything, it hits him HARD. Fevers are the worst. They affect his ability to walk to the point of needing a wheelchair. He was so weak leaving Panama the doctor insisted he use a wheelchair in the airport. He didn’t refuse or fight me, so I know he was feeling bad. He was feeling too bad to worry what about what he usually worries about. “Everyone will look at me.” “I don’t LOOK like I need a wheelchair.” “Someone else needs it worse.” “I can manage.” These are a few thoughts that come to mind. We have both learned over the course of his MS journey that doing what is best in that moment is the only choice. Who cares what strangers will think when they look at you? That is part of living with MS or any other debilitating disease. It is a learning curve like anything else. Stephen has learned this and he is slowly coming to the point where he feels comfortable accepting the help when needed.
I won’t lie. I did dream about our return trip being life changing. I KNOW, BE REALISTIC. But I did think it. I saw him walking through the airport with a pep in his step; a new man. So yes, it was a reality check. But it hasn’t stopped me from believing this is going to work. I believe in modern medicine, science and the power of prayer. I believe this is going to change his life and all those other people’s lives also. So keep believing with me.
4 thoughts on “Counting the Days”
One of the ancillary benefits of SJ’s treatment is hope. Hope alone can put a “pep in a step”. Always remember that good things take time.
We are with you!
I’ve heard it does take time, so just be patient. As an MS’er with 20 years under my belt, it took me a long time to sock away my pride. It was hard to start using a cane, even harder to get a blue placard for my truck to I could park closer to everything. I needed a wheelchair on my recent trip to Jamaica as the property was took big for me to walk. It is what it is. Living my best life has now superseded any pride or embarrassment I might have had. I don’t care what people think anymore unless they want to trade bodies. Keep you chin up and do what’s best for you!
Your blog is awesome and I am so proud of you!! You are a awesome Mom and take great care of Stephen. People sometime forget what the spouse of the person with MS also goes through !!! It is hard on everyone to see him going through this , we have watched his slow decline during this disease !! We love him very much and pray every day for a miracle, it WILL happen
Good thoughts, prayers and hugs to all of you. I don’t think I have seen You since your wedding, but I still think of you as one of my boys! Keep fighting forward.