Keeping My Symptoms In Check...

 Written: 11/01/24

It has been a minute since my last blog update. I had a few months where things were a bit challenging. Then my 6-month infusion was due so I began to isolate myself to ensure that I could stay healthy and strong during recovery time. It often feels like Groundhogs Day because according to my symptom tracker I have flare ups at specific times of the year. If only I could narrow down what triggers them. 

In June 2024 my tonic spasms were elevated and pretty consistent to a point where I could not walk without wearing my Xtern brace or using my cane. Short walks were enough to make me extremely tired. I went about an entire month with the spasm hoping that my brace would be a savior. Unfortunately, my leg began to fight against the brace so at my 6-month MS follow up we talked about other options. I was no longer a candidate for Botox shots because my spasms do not show a target area due to it being the entire leg now. After talking with my specialist, we decided on trying an anti-epileptic medication. It took me a few good months or two to tolerate side effects even with slowly increasing to a full dose. I still deal with fatigue, but it is more manageable compared to the first couple of weeks when I felt like I was going to fall asleep just standing up. My spasms seem to more controllable now that I have been on the medication for about 4 months now. 

In September, I spent a few days in Bend doing my 6 month follow up with my PT and getting my power juice (Ocrevus infusion). I spent 2 hours with my PT where we did updates, preliminary testing and tried some new exercises. Thankfully my preliminary tests showed an improvement even though I was not able to exercise for a good 2 to 3 months. I also had a successful infusion which always makes things less stressful. I feel like I recovered a little quicker this time but still dealt with the nausea which at times can make it hard to participate in gatherings. I did sleep more post infusion which was different. I know that the medication for my spasms makes me fatigued and combined with the infusion it just made my body feel heavy and extremely exhausted. I often feel like Sleepy from Snow White. 

I am about 2.5 months post infusion and slowly starting to get back into routine. I love to be at the gym and getting a good workout in. I have included swimming into my workout schedule, but it does cause some problems at times. The past few weeks have been interesting with lots of numbness and pain. I have been pushing through it all. I have been taking 2-hour naps because by 12pm I am completely exhausted. It definitely is something I have never dealt with before. I sit down every morning looking at my symptom calendar to updated with how I am feeling. Unfortunately, I have not found the answers to what I am feeling or what I could be doing to trigger anything. I hope that one day I can get a " I GOT IT " moment. All I can do is keep my symptoms in check by writing them down and updating my doctor when something does not seem to resolve itself after a few days. 

My next PT session and infusion is set for March 2025. Until then, I am grateful for my team of doctors, family and friends who continue to help me through this journey. Even if I look tired or have dark circles under the eyes you will see me on the bench cheering on my little boy. I am not giving up. With patience and courage, I still hold my head up high. 

I chose to NOT GIVE UP!

I AM ME!

I will continue to GROW!

I am STRONG!

I can LIVE my DREAMS!

#RENITASTRONG

I am the INEVITABLE MS DEFYER

WATCH ME!!!