Hi everyone I hope you’re doing well. As always I had intended on putting out a post at the beginning of January except those plans came to a screeching halt because of an unplanned surgery and Covid! The one thing I can say for sure is that my life is never boring!

At the beginning of Jan, I ran into a surgical procedure as my upper stimulator stopped working for an unknown reason. We had been trying to get it working but finally, it was decided that nothing more could be done without surgical intervention. The neurosurgeon decided that the best course of action would be to do a surgery that was less invasive first and if that didn’t work do a second surgery to follow. This involved replacing the battery with a different type of battery first, with the hope being that the simple fix would be all that it would take to get the stimulator going. The reason for this choice was that replacing the entire unit including the wire that goes into my spinal comes with several complications including a risk of paralysis.

The first surgery which happened almost two months ago wasn’t successful. So I’ll have to undergo a second surgery after all. After all my previous surgeries there’s a fair amount of scar tissue that’s been built up. This will make it much more difficult for the surgeon to run the wire to where it needs to go, as well as position the lead that delivers the stimulation. If he isn’t able to get the lead into the proper position, then it won’t deliver the stimulation to the group of nerves it needs to. As you can imagine this isn’t an easy decision for me to make, and I will have to meet with the surgeon to discuss all my options.

After several attempts at starting this post, I had to shut things down temporarily as I picked up a nasty bout of that beast Covid! It started with one of my daughters getting sick and ended up working its way through our entire family. One by one each of us in the family fell ill! I’m over it now however still dealing with some long-term symptoms that affect me every so often. Needless to say, it threw a huge wrench into meeting with the neurosurgeon and planning what the next steps are with my stimulator.

If you’d asked me if this was how I was expected the year to start I’d have told you not in the least. I have plans for different projects in the works, and I’ve been trying to put what has been a few tough years behind me. It doesn’t mean that the projects I have planned aren’t going to happen because they will! All it means is that I’m going to have to sideline them a little bit longer. Focusing on taking care of myself at this moment is what matters the most. I’ve come to understand on this journey that you have to take things day by day, and that if changes or adjustments need to be made then that’s all part of that journey.

This hasn’t always been the case, and it took a long time to accept and understand that this cycle of one step forward one step back was just all a part of managing my chronic illness. I had to come to grips with the fact that additional health issues might keep coming up, and that there might be temporary setbacks that come up along the way. Sometimes coming up against these setbacks causes us to get stuck, and as a result, our mindset or attitude can shift in a very negative way. When it shifts like this it can make it extremely hard to see any way forward. For this reason, I always have to make a conscious effort to be positive and not to get discouraged or get into my head. So I rely wholeheartedly on my faith to guide and direct me at times like these.

Accepting what’s happened over the last seventeen years has been a work in process, and isn’t one of those things where I just flip a switch and say everything is ok. There will always be moments of struggle with this diagnosis or things that come up along the way. I get asked all the time “how do you just accept everything that’s happened and just move on” from it? Often my answer surprises people because I think that they assume I just put everything in the past and move on. That I forget about everything I’ve had to go through and that I’ll never have to deal with any hardships or challenges ever again.

In no way at all am I forgetting about the things I’ve had to endure over all those years. In fact, all of those things help me draw strength and become stronger and more resilient. As I just mentioned more struggles are bound to come up as I continue on this journey. Every time, trying to bring with those struggles emotions like fear, anxiety, and even the doubt that I’ve had to experience along the way. The difference is that I’m in a better place mentally, and those emotions don’t have the same ability to gain the type of hold on me the way they once did.

When I come up against those things that try to throw us off balance I’m able to stand up against them instead of letting them knock me down. Whether we like it or not life is going to continue to throw adverse situations our way. I’m not trying to be negative but rather realistic. It also goes on to say that without faith in my life at times like these, I know I wouldn’t be able to handle the circumstances I face the way I do. My faith has been the single biggest reason that I have been able to accept and move past all the negative that this disease throws at me!

If you remember at the start of this post the second surgery that I was facing was risky and starting to cause a lot of second thoughts! Since then, I have met with the neurosurgeon and I have good news. He’s found a way to do the surgery with minimal risk and more importantly to get a new stim put in place. Now it’s just a matter of waiting until a surgery time comes available. After an in-depth discussion with my amazing neurosurgeon Dr. Beumbo I can go into this procedure confident that I’m making the right decision. There’s no doubt the year got off to a rough start but I won’t allow car trouble to stop me from getting to where I want to go. Sure, I’ve had to pull over for a few repairs to be done to this old beat-up car but I’ll be back on the road in no time!