Much Less Conspicuous...
WRITTEN 7/30/23
When will my reflection show who I want to see? I looked at my reflection while on the water and I felt like I was looking at someone I didn't know. The reflection was not clear. I saw someone who is bitter, vulnerable, embarrassed, exhausted and fed up with constantly having to roll with the punches. We are gearing up for an MRI, physical therapy round 2 and another MS treatment in the next few months. I can't count the number of times I have asked my husband " Can I please go off medication and just be healed?" I feel like the moment I start to feel better and more like myself I am given another challenge.
It is fire season in our neck of the woods which means most of our beautiful skies are filled with heavy smoke. We drove through a thick patch of smoke to get to Bend the other day and I couldn't help but think that this is how I feel about my MS. The smoke is SO thick that I cannot see the mountains. Sometimes the journey with MS can be filled with the unknown and no clear end in sight. Will we come to a complete stop because we cannot see through the patch of smoke? Do we keep inching our way through slowly until things begin to clear up? Do I keep pushing through even though the pain can be exhausting, or do I give in? I do feel like a burden at times. Even more frustrating is telling my son we have a road trip to take mom to the doctors. I feel like that is all we do to keep up with my current situation. What does my son think about his mom constantly being at the doctors? How do I explain to him that mom needs to rest? The continuous thoughts and questions of How? What? When? and why? seem to be a reoccurring theme. Even though this is all challenging me I still work hard at being a part of my son's life with sports, and activities. I am working hard on redirecting my focus from "tomorrow" to TODAY (Present moment). I want to have some control for once. I am overwhelmed with not knowing what the future holds and fear is running my emotions.
6 MONTH FOLLOW UP
On Thursday June 15, 2023, I had my routine 6 month follow up appointment with my MS specialist. During the visit we talked about my last infusion and made a game plan to battle side effects for my upcoming infusion on September 21. During this visit my spasm in my right leg was triggered after the quick walk evaluation. We talked about the positive outcomes we saw when I did physical therapy at the beginning of the year. Unfortunately, the PT in my local area felt like I would benefit more if I worked with a PT specializing in MS and neurology. My doctor made a referral to a PT in Bend, OR. My next blog coming will be talking about my adventure with a new PT. Stay tuned... We also ran over information regarding Botox shots and muscle relaxants as another source of possibly gaining some control of these spasms.
ANNUAL MRI
On Friday July 28, 2023, I went in for my annual MRI. This MRI would show us if my current DMT is helping or not. The MRI we did before I started Ocrevus showed some new lesions and I hope that they are getting better with no additional lesions. Waiting on results is nerve wracking, but I am trying to keep everything under control. This was the very first MRI I have done that did not require contrast, so I was only in the machine for an hour compared to almost 2 hours. It was nice walking out not feeling under the weather due to the contrast.
My results were posted 8/2/23:
Brain MRI is STABLE with NO NEW LESIONS. Spinal MRI is STABLE and IMPROVED. The lesion at T2-3 is much less conspicuous on this exam compared to the prior.
Those results are such a relief to hear but doesn't seem to ease or explain the reason for my tonic spasms / feelings of weakness in my legs. We are still investigating and trying to figure out how to best limit the severity of the spasms. It also shows that my current DMT is working which is wonderful considering the journey it took to get my body to adjust to the medication.
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