In Life Change Is Inevitable...
Written December 22, 2021
September 2021, I took a leap and trained to be a MS Support group leader that is sponsored through the National MS Society. I now offer virtual support group meetings for my community. We meet once a month where we get the opportunity to talk and gain support from others in alike situations. I have really enjoyed getting to meet new members and offer support where they may need it. I have found a couple of individuals that are closer to my age as well. I look forward to providing more awareness to the community as well.
I do not do well telling others about my struggles and I honestly try to hide it. But here is the truth...
I am scared, extremely nervous and definitely feeling defeated. This year has tried a lot of my patience and acceptance in my MS journey. I honestly kept saying I needed to update my blog every time a bump in my journey occurred, but I lost track of time. I sit here on December 22, 2021, reflecting and celebrating another anniversary (#4) since my first diagnosis. I continue to wonder why I have been chosen for this path and what may happen in the future.
The beginning of the year was a rough start as I was dealing with new symptoms that started to indicate a possible relapse. I had buzzing and numbness in my shoulder blades. It felt like I was laying on a vibrator. I also dealt with arm pain that felt like I was on fire. It hurt to wear clothes. I sometimes just had to sit with a blanket wrapped around my shoulders just for the pressure. After a few weeks of dealing with those pains my doctor and I decided it was time to get an MRI. At the end of 2019, I had my annual MRI which showed a couple new lesions in the brain, but we figured that could have been due to pregnancy since I was not on any DMT at the time. Early 2021 we made our trek to the MS Specialist in Bend and had a complete spine and brain MRI done. The results showed NEDA (No Evidence of Disease Activity) which was a relief to hear but why would l be dealing with the new symptoms. My doctor said with the results from my MRI that it was probably just the nervous system mis firing due to recovering from giving birth. We decided to continue Tecfidera and just began to adjust to the new me.
In June 2021 the flushing that I experience from my medication began to be a little more unbearable. I would turn as red as Santas hat, and my skin was so sensitive that it began to create rashes. Mostly on my arms which have finally been identified as a vascular problem. To add to the problems my leg pains have returned (spasticity pain, and numbness). I have extreme sensitivity (electrical fence) over the shin bone where I cannot wear pants without a compression sleeve on my calf. I get spasticity (muscle tightness) to a point where it is like a constant Charlie horse. Most nights my pain levels increase where I cannot not rest. I have a high pain tolerance, but the constant pain can be draining. I try hard to relieve the pain with magnesium lotion and placing a pillow between my legs to add pressure, but it doesn't always help. I have tried a couple of muscle relaxers prescribed by the doctor but honestly it made my pain levels skyrocket into space. It just did the complete opposite. Sometimes I am unable to go to the grocery store without coming home in pain. I often deal with numbness and pain in the right hand that radiates to the upper arm. The newest concern and safety hazard is not being able to feel heat in the fingertips. It was discovered when I was baking with my mom, and I was able to just pick up items that came directly out of the oven. To test temperature, I have to rely on my wrist or touch to my mouth. It feels like I am out in the mountain walking in deep snow. It can be a lot of work somedays, but I have to keep going.
November 2021 came quickly but not quickly enough because of dealing with all of the pain and negativity that I was developing. After talking with my MS Specialist and brainstorming with Beau my husband we finally came to an agreement that it is time for a change.
When we talk about the inevitable do, we really understand what it means? Everyone has a different journey and a version of inevitable. After being diagnosed with MS I have come to an understanding that I can slow down the process, but I cannot stop it. The inevitable for me is that change will happen and that includes the trial and error of DMTs.
I am working towards transitioning to Ocrevus an infusion. Change has never been my favorite. I struggle with it a lot because once I'm in a groove and comfy spot that is where I like to stay. There is a huge process to go through before starting the new DMT. Insurance, blood tests to rule out silent infections, update immunizations etc. Along the lines of blood tests, I gave 22 vials of blood only from one vein. Thats right! The nurse that took my blood was extremely impressed. Most individuals take 2 arms to complete that tall order. I felt like I just donated blood after looking at what was collected. I have passed majority of my blood work minus low numbers in vitamin D and B12 but those are being adjusted with vitamins.
Ocrevus is a 5-hour infusion that is done 2 times (every 6 months) a year. It is an immune suppressant DMT so it can make me more vulnerable to sickness. Many individuals have reactions to the medication, so precautions have to be taken. I will be looking into traveling to Bend, OR for the infusions because they have better healthcare options in care of an emergency. There is a lot of uncertainty, and all relies on how the individual with how they react. I could just sit here and write every little detail, but I am going to spare you with that boring information. If you would like to learn more about the DMT please check out OCREVUS® (ocrelizumab) | Multiple Sclerosis (MS) Treatment
My journey has some new challenges which once again happens around the holidays. It can be hard to be in a jolly mood when your mind is wandering and scrambling to keep it together. I am working hard to stay emotionally, physically and spiritually stable. I am struggling but sometimes I have to fall before I can put myself back together again. I have a toddler who shows me resilience so I must continue to defy the inevitable. I will work hard to keep you all up to date more than just once in a year.
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