Lost Dreams
Before I provide you with this update, I want to thank you for your patience and understanding. I have not posted because I wasn't sure of how I was going to provide you with this update and still provide encouragement. In this article, I am going to share some of my hopes and dreams. I am also going to share my latest update and the next steps. I also encourage you to join my YouTube channel, @JFreakA2Z, for my video update that will happen later this week.
In a not-so-distant past, I always had a dream that I never thought was impossible, and I never considered it to be an over-the-top desire. When I started following Christ, He did some amazing things. He gave me the knowledge and skill to be able to meet the needs of families and students through ministry opportunities. He compounded that with giving me a job that allowed a deeper connection because we were all on the same schedule. I got to be a part of so many lives. I was never concerned about whether I would marry or not because my only focus was on Christ and pointing others to Christ. If marriage was going to be a part of that journey, then the right person would come along, and those doors would open.
I still believe in the family unit. I always had a desire to have my own home, and I pursued several opportunities to build on available property. I actually thought that one of those opportunities would work out, and I was so close on many occasions. As I look back, I wish I would have just dove in and proceeded, but I can see how I was protected from hidden problems with properties that were never disclosed while I was looking at those properties.
I always thought that if I had my own place, it would give me the opportunity to be a great host. I would be able to invite people into my home to have bigger and better connections. The space would be welcoming and promote discussions about life and what the Bible says about our struggles and questions. I felt that the close and inviting space of a home would break down barriers and help people open up about life and their walk or their lack of a walk with Jesus. The desire and dream did not stop there. I often thought about being a foster parent and opening my home to those that had been uprooted from their homes. There were so many ideas and opportunities that I prayed about often. Those hopes and dreams were close to becoming reality around 2014/2015, but the finances were not there, and life continued to happen. I admit, at some point, I lost focus. Then, in 2016, came the diagnosis of MS, and when I was not serving families in ministry and planning sermons and activities, I was praying and seeking answers to my diagnosis. I won't repeat what I have already discussed in other parts of my blog. What I am willing to repeat is that I got answers. I have constantly been surrounded by people that prayed and made the impossible, possible. Even when we were all uncertain of the outcome, it was a chance that we were willing to take. And it worked!!! I no longer have active relapsing-remitting MS. No new lesions, and my MRIs have remained unchanged since the disease was halted in October 2020. This was no small feat, and I credit the prayers that surrounded me and ultimately the work of Christ to get me to this great opportunity.
Once the MS was halted, the prayers did not stop there. I remained hopeful and positive that my body would repair itself enough that I could live a somewhat normal life. I laugh because what is "normal"? LOL. Yes, I have had times when I absolutely thought that my body was well on its way to repairing itself. The day I woke up and my faulty immune system was non-existent, I realized suddenly that I had clarity. My thoughts were clear and in order. The brain fog was completely absent. This was a good sign, but I knew my body had been through a lot, and my future was uncertain even though I remained optimistic. Even though my cognitive function seemed to be quickly recovering, I noticed that I was experiencing physical changes. My legs were still heavy at times, and I was concerned if my bowel and bladder function would ever improve. Being in my mid-40s and having these issues was not something I wanted to deal with. My walking declined, and I found myself having days of being unsteady. Eventually, with therapy and learning to listen to my body, I was able to improve and navigate through these issues. You can read my past entries, and you will find that I eventually returned to a full-time job rather quickly. I am not certain that was the best decision I ever made, but at this point, the decision was made, and I am living with those consequences.
Today, I am questioning some of the decisions I have made. Ultimately, I wish I would have taken more time off for my recovery. The reason for arriving at this conclusion is that everything I did at my job was going well as long as I had the proper support, but as ownership changed, so did the support. Eventually, with changes in insurance and work demands, I was unable to continue to focus on my therapy. To date, I still have walking issues. Walking has become messy. I don't do stairs well, and I find myself needing a little more support or being a little more cautious navigating in this world. Since the elimination of my job, I have tried to focus on my health as much as possible, and I have seen some minor improvements, but overall, I still have difficult days. I deal with a lot of pain and muscle spasms that prevent me from standing for too long or sitting for too long. I am also finding that other non-MS-related damage to my body is contributing to the spasms and stiffness in my right leg.
After my latest MRI that yielded no changes, and an in-person visit to my neurologist at Cleveland Clinic, it has been determined that I have moved into Secondary Progressive MS. Why this change if the disease has been halted? The easiest way for me to explain is for everyone to put on their firefighter hat. When a crew responds to a structure fire, they hit that fire with everything they got. This includes skills, training, and equipment with the goal to save the structure. Sometimes they are successful and put out the fire in time, so there remains little to no damage, and with the right construction crew, that home can be put back together in a way that you would never know that it was on fire. But sometimes, even though the fire was successfully extinguished, the structure continues to smolder, and eventually it is determined that the structure could not be saved and is declared a loss. With Secondary Progressive MS, that's the best way to describe what has happened to my body. Even though the immune system was reset and the damaging activity was stopped, the fire smoldered. I knew the disease had been doing a lot of damage before I had the procedure, but I don't regret moving forward. I absolutely believe that if I had not had the procedure, I would be worse than I am today.
Since my visit with my neurologist in July, there still remained some unanswered questions. Specifically, is my trouble walking isolated from the damage to my nervous system, or is it from damage caused by a DVT I had many years ago? After reviewing my medical records, the nervous system damage is a factor, but the old DVT injury may be playing more of a role than I originally thought. In 2024, I had a venogram to explore the injury. They found that the circulation is poor and is likely the culprit of my leg spasms. If it is able to be fixed, there are only four doctors in this country that were recommended for a consultation. The first one on the list is at the Cleveland Clinic. I am still waiting for clearance to get that consultation.
I am not exactly sure what the future will look like, and although I got that home I talked about in this article, it all happened later in life. So here I am piecing things together each month to make ends meet for a mortgage that is only 1 year and 6 months old. Somehow, some way, God shows up every month. Did I ever think I would be in this exact situation 1.5 years ago? No. In the end, it's just stuff. God gave it, and He can take it away. Just take a look at the book of Job.
Thank you all for continuing to pray for my continued success and healing. I rarely let doctors box me into a category or diagnosis, but only God has the final say. I know God has led me to some excellent medical professionals, AND they jump through many hoops to continue to make sure I have the best care available. I am grateful, but all of the credit goes to Christ.
So, it looks like we are going to have to start down another road on this journey. I hope you can continue to join me on this walk and continue to speak those words of life and healing.
Until the next update.
Rooftop Prayer Warrior
