Well, today I will talk about what the next steps are for me in reguards to my health. Not every post here will be medically related, but some will be as it is part of my story. I’m sure in the posts ahead I will talk about the beginning of this craiziness, but today I will focus on my next steps.  I hope that as you follow my journey you can feel my humor even when it seems impossible to find laughter. God has been my lighthouse during all of this and because of Him, I am filled with joy. I will never lie and tell you it’s been easy because it’s been far from easy. Sometimes it’s been tough. Sometimes it felt tougher than my strength could handle. However, when I am ready to tap out, He is ready to finish the good fight for me.

On to the details…all this medical jargon is so boring, but to give you the full praise report you must first know how hopeless things can sound and look at times.

I recently had an EMG dealing with my autonomic system…I totally had to ask what an autonomic system was! It is the things you never think about. Blinking, your heart rate, your nervous system…pretty much they were correct… I had never thought about it at all!  After I had met with the Stroke Neurologist at the UofM, he had decided I needed this test.

The day of this test we were running early. Well thank goodness because finding the right check in place took SO LONG!! We finally found where they perform EMG’s and I signed in. Before I could even sit down, they told me I wasn’t registered there. That feeling of dread had me thinking…oh no! We just drove almost two hours, my husband took the day off…GULP!!!! She soon figured out that I was having a “special” EMG and sent me back down to the Neuro floor. WHEW!!! Thank goodness I didn’t screw up the day!

So the test came and part of it was uncomfortable, but not too bad. It was long as they performed multiple tests. For the last test, a Neurologist that I hadn’t met came in as it was performed. He explained that I did well on some of the tests, but there was one particular test..a sweat test that I guess I failed on each site. He talked about the possibly of small fiber neuropathy and said he would talk with my Neuro about these results and someone would get back with me. Well, they did and my next step will be seeing that very same Neurologist I met that day. I guess He is a Neuromuscular Specialist and I will be seeing him next month.

Let me take you back just a couple of months so you can understand why I even needed to see this neurologist…

Some of you may know, but others may not that after my last surgery, things just didn’t go quite as planned. Something was seriously wrong because every time I stood up, it felt like I wasn’t getting enough blood to my head and I felt like I was going to pass out. I had episodes like this over and over, even once during church which was so frightening that we decided to go to the local ER. Well, since I had just had a surgery they assumed I was just dehydrated and pumped me with fluids and I was home that evening. Instead of feeling better though, each day I would feel worse until one day even moving positions on the couch made me feel like I was going to pass out. Since I was home alone it was scary because I surely didn’t want my children coming home and finding their mother passed out. One of my sweet friends knew I wasn’t myself and she offered to take me to a different hospital. Well I don’t like relying on people and I had just gone 4 days earlier and was sent home so I almost didn’t go. To make a super long story short I went and was admitted after my blood pressure and heart rate would be unsteady if I stood up or moved.

This picture is definitely not a frame worthy photo, but it clearly shows how much things have improved since this day! Even though this was just over a week after my surgery, I had no pain medications in my system…the look here is sheer exhaustion.

I had no idea at that time what was going on I just knew it was something I had never gone through before. When the feelings would come I knew that I couldn’t panic during those times as that would surely raise my blood pressure so I learned how to soothe myself in times that fear could have easily taken over. I would speak quietly to God telling Him how very much I needed him at that moment. I knew my family was scared and that made me so angry that I couldn’t soothe them with an answer. I tried SO HARD to push myself out of those episodes, but there was literally nothing I could do to change it. My husband saw the weariness and He would sit by the side of that hospital bed and just pray. I was thankful that our church streams live because on that Sunday I needed a boost! That particular Sunday our Pastor’s wife was speaking. I sat on my bed using my iPhone as a personal television and I tuned in. You can clearly see His peace in this picture and this was only a couple days after the picture above! Even though the path ahead is still uncertain, the greatest security lies in the fact that I will never have to walk it alone.

After extensive testing, They came up with the diagnosis of a hole in my heart, mitral valve regurgitation, and a spot on my brain that may have been a stroke. I had to have another test where they went down my throat to look at my heart from an inside view and from that test the cardio team here said that the hole they thought was small was large and there also was moderate shunting which was allowing both my unfiltered and filtered blood to mix and get pumped to all of my organs. Their recommendation was to get this closed by going through my groin immediately and inserting a device to close that hole as another stroke could happen at any time.

HOLD ON!!!!! I am literally a ticking time bomb???

Those words were literally brutal in my mind. I had already gone back to work and even though I was feeling quite dreadful, I was so proud that I was back and being able to talk to others about what they were going through instead of just focusing on my problems helped me tremendously. Now those words had me gripped…how would I know when? What if I was driving my car? What if I was working with one of my school kiddos? To be completely honest at that time I only drove my car to and from work because I didn’t want to be behind the wheel and injure innocent people.

I had all of this information, I had a cardiologist who my husband and I both thought highly of who would implant this device, I had probably the most scary symptoms I have ever had, but what I didn’t have was a peace to go through with this procedure. I know it probably sounds so completely crazy to someone reading this, but I knew I needed more time. A person who was practically told she could have another stroke at any time needs more time??? Was I losing it? A couple of co-workers suggested I get a second opinion and at first that seemed too large of a task because it took so much to get to this point. I didn’t want my family to go through more, but eventually I called the U of M and got right in!

Their opinion at first was that I hold off on the closure until we had the whole picture. My body had gone through a lot and they respected my wishes that I didn’t feel right about getting this device. They are the ones who referred me to the Stroke Neuro for further testing. I actually got to see them all in the same day due to a cancellation so that was nice and during that whirlwind of appointments all in the same day they said the most beautiful words, “You are not a ticking time bomb!”

Thank you, Jesus!!!! What freedom those words offered….driving, exercising again, breathing, FREEDOM!!! I closed my eyes and it felt like I was removing a sash that had the word FEAR across it!

In the meantime I have had just a few tests 😉 and one of which revealed I was allergic to the device that was going to be implanted in the center of my heart!! The allergist said this would have been a disaster if I had would have had the surgery. This small device pictured below would have caused so much turmoil in a system that is already in fight mode:

This is the reason I didn’t have a peace.  God was guiding me onto a different path and even though it looked and felt that I may be traveling in the wrong direction, He continued to hold my hand and guide me forward. I am so thankful for His wisdom. I am thankful He gives great wisdom to doctors when we need them.  I am thankful He gives rest to the weary.

One more positive report came recently! What was called a possible stroke from the scans here was looked at in great detail at the UofM. At this time, the neurologist who specializes in strokes sees that spot on my cerebellum, but he does NOT believe it came from a stroke. We are in the process of figuring out what it actually is, but it not being called a stroke frees me from having to close the hole in my heart at this time in his opinion. The cardio teams are still collaborating on their recommendations, but at this moment it grants my body more time to rest no matter what may come. Each day my body gets even stronger! Because I am allergic to the “easier way” it would probably have to be open heart if we were to focus on the hole. My prayer has and will continue to be complete healing and I hold on to the words He gives others on my behalf. Those words of wisdom increase not only my faith, but the faith of my family as well! Speaking of them, God has blessed me with great love with these people! My husband of 21 years, three beautiful children, and two puff balls we call dogs!! I am surely blessed!!

Thanks for reading more of my story and I am so inspired by the encouragement to keep going! Long ago I started writing a book, but life happened and I put it down. Maybe someday I will pick up where I left off… until then, may God’s peace be upon you! Much love 💕