ONE Month Post Infusion...

Written 4/29/2022

Did you ever sit in math or science class and get upset because you didn’t understand something? Math was one of the hardest subjects for me. I never could figure out how A plus B somehow equaled E. There always felt like there was something missing in the equation, and I struggled reading between the lines. Multiple Sclerosis is just like math. None of the information given in my problem seems to match up with a solution. Learning to listen to your body and adjust according to the situation can be a trial and error until you get it right. It’s like the statewide problem-solving tests. There is only one answer, but it depends on the steps and instructions you have provided as to whether or not your answer is validated. I know there were many times where I knew the correct answer, but I couldn’t prove it using words and steps. MS is the same way.

My MS specialist told me that individuals with a neurological problem will always have some kind of struggle and will constantly be learning and adapting to have a stable life. My biggest competitor is spasticity which is known to occur with those who have damage to the spinal cord and/or the brain. Well folks, I have both which makes this problem solving a little more complicated. There are ways to retrain the nerves and even strengthen the connections but there will always be a glitch somewhere that causes some issues. It will always be a challenge and learning new ways to adapt are what makes us resilient.

The frustration and anger of not knowing why or how I trigger my pain receptors seems to be the story of my life at the moment. I literally could go swimming and exercise daily with very minimal pain occurring. Yet, the one day I go for a slow pace 2mile walk with my toddler the spasticity comes into play creating more pain than one should endure. The sensitivity in shin bone heightens, involuntary foot spasms occur and locking of the ankle to the pinky toe. Charlie horses and knots of large sizes invade the calf just below the knee. Throbbing and sensations of standing on a vibrator shake the entire body. My feet feel like they are sunburned and feeling the floor is no longer an option because my feet are currently numb. A cut up piece of leggings is like a leg warmer and adding pressure to the lower portion of the leg acting as a source of comfort and support to the pain levels. What does one do? Never Give Up! Keep On Going!

It's officially been a month since the last infusion and I am still learning how to navigate the new sensations and often side effects. Trying new medications are always a challenge because of the potential side effects but it is worth trying them.

Tuesday April 26, 2022 was my routine 6 month check up with my MS Specialist. Ever since my diagnosis in 2017 I have met with my MS Specialist every 6 months. These appointments serve as a check in to see what my MS has been up to and do physical tests to keep a record of my physical abilities. We did a day trip to Bend for this appointment. On the way to my appointment I talked with my husband and told him I knew that my physical test wasn't going to be as strong as I have been over the past few visits. Since my Ocrevus infusion I have been working hard to navigate through the changes that my body is going through. I was trying to mentally prepare myself for the outcome. I am pretty competitive and when it comes to my physical abilities I work hard to maintain my strength even more now that I have MS. I am not a fan of disappointment.

My appointment was set for 3pm and when I arrived to the doctors office I was directed to a receptionist who updated my insurance, had me sign a form of consent for care and updated my medication list. I was shortly greeted by the nurse where we took my weight and pulse. The nurse was updating my medication list in the program when she said " Oh you are the one with the interesting Ocrevus side effects." I quickly reminded the nurse " Yes, my book of health does not follow the original medical books...AKA...Renita 101." 

My doctor followed in to the room just as the nurse was leaving where we talked and made a plan of attack for the next few months. 

1. My next infusion has been rescheduled for September 29, 2022, due to my doctor being out of the office in the month of October. We both came to agreement that we wanted to be able to connect in case of an emergency. Another note is that pace at which I receive the medication will be increased because they have to finish the infusion before the center closes. If my body cannot handle the faster pace for the full dose then we will try to introduce the medication in two different rounds which would mean multiple visits for me. 

2. I am scheduled for an MRI on June 30th. It is routine to have an MRI 2-3 months after starting Ocrevus to get a base line. Even if I show new or active lesions this round it will give us a starting point for the next MRI after a few full infusions. I also requested a follow up appointment after my MRI so I can get my results and not have to wait 2 weeks. 

3. I mentioned to my doctor about my leg pains that still challenge me. We are going to try another muscle relaxer that we hope will solve the issues. I don't like to rely on medication to solve my pains, but I would love to be able to rest at night and not be in pain. I was assured that 80% of MS individuals deal with spasms or spasticity. I guess I fall into a category with my spasticity. 

4. I mentioned to my doctor that I was feeling a little off especially with my walking, fatigued and overall stability isn't there. She mentioned that it is called the "Crap Gap." Some individuals experience sensations of their MS symptoms around month 5 before their next infusion or when they are first introduced to the medication. I am experiencing new symptoms now because my body is adjusting to the medication. I feel like my feet are dragging, it hurts to jump or participate in high impact workouts. I still struggle with buzzing in the shoulders, leg pain (feels like bone pain), overall body aches, nausea every once in a while, and newest is numbness/tingling in the face around my sinuses. I told my doctor that I have been slowly working out with my husband. She looked at me and said, " I highly suggest that you do low impact exercise with the pain and concerns you have told me." If I don't slowdown that I will injure myself because I am pushing my body too far while it is trying to heal. It hurt to hear that because I don't like slowing down. I want to be active and outgoing. Take things at a slower pace just don't always feel enough for a busy body such as myself. 

My husband who is one of my biggest supports searched the marketplace and quickly found a solution. He went and bought a row machine (I loved when I did CrossFit). He told me here is my alternate solution. I want to work out and walking just isn't enough to use up the energy that I attain. I can tell you that this row machine will be a great source of relief for the stress that I store up inside. It challenges me spiritually, physically, mentally and emotionally. 

5. I passed my physical exam where my balance, walking, reflexes and strength were tested. My results are not as good as I would have like them to be, but I have to learn to give myself some room to slack. The new transition with DMT really challenged my balance, and strength which showed in the results. This just gives me room to improve in the future.

I wish I could write this blog and say that I am cured from everything and that we found the solution to my MS. For now, I can tell you that I am hopefully on the mend and maybe things will get better in time. Doctor said it will take 3 to 4 infusions before we really see if Ocrevus is helping or not. Until then, I will continue to fight back with all my might.

Life is GREAT!

Every day is a BLESSING!

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!!!