Number 8

As I finally am now resting in my bed and home from the hospital where today I received my Ocrevus infusion (Number 8), I find myself ready to take the leap. Maybe it’s a leap of faith. It does, however, feel extremely scary. I compare it to the song from the movie, Frozen 2, “Into the Unknown.” What leap you might ask? I am going to launch my blog. I am finally at the point where I feel it’s simply time. Two close friends of mine this morning relayed to me during a live feed on YouTube to just do it. Get it out there.

What I noticed about the number 8 is not just the fact that it’s the number of infusions I now have received of Ocrevus to date, but there are two circles put together to form a number. I have noticed in the last year the God weaves circles in my life. So much of what takes place in my life that starts in one direction continually takes place until it meets another direction and yet the two paths so to speak weave together. While that occurs I see that the direction means so much more and it is so fitting to what I experienced today at the hospital.

I am the 1% category as the doctors call me over the years. In the case of my infusion, I have reacted to Ocrevus more than most patients at the MS Clinic I go to. But since I started the infusion in 2017, the protocol of meds and steps I go through to receive my infusion gets tweaked each time I receive it. With each infusion I eventually end up in the Emergency Department of my local area hospital once I am back home sometime in the middle of the night. My throat usually gets itchy at first, then intensely painful and sore to swallow, it starts to tighten and feels full like I have a huge tennis ball blocking my esophagus and then I can’t swallow hardly at all. As all that occurs together, I start to get chest pain from tightening up due to panic and then my muscles in my rib cage contract which is called, an MS Hug. A real phenomenon that mimics a heart attack and it’s so bad that it’s hard to take a single breath in. That whole reaction has occurred with each infusion since I started in 2017 until TODAY-January 21, 2021. Like the saying, the buck stops here.

I can now see like my reference to the number 8 that I had to continually go through two different paths at the same time that kept intertwining. One path was to take the infusion and stick with it because it works and I have been in remission from my disease progressing since I started in 2017 continuous. Remission from scars occurring which are called, ‘lesions,’ located on my brain, my cervical spine and my thoracic spine. The remission is the reason I must stay on the medication. Any alternative therapy will not work as well and currently, Ocrevus, is the most powerful of options for me to fight my MS in the category of Disease Modifying Therapies they have as medications to fight MS. These are known as DMT’s. The second path is the reaction that occurs with each infusion up until today and endless ED trips as well as inpatient stays to control symptoms that have flared causing temporary mobility issues with me mostly in my legs. The two paths are intertwined. One does not occur on it’s own without the other. My metaphor may sound complicated or maybe even confusing. But it makes sense to me. Today, I saw the bigger picture and I saw why I had to ride out these paths mixing together for the past, almost 4 years. It all had a purpose leading up to today’s infusion. And today, I did not have that reaction. I got very mild itching in my throat at the three hour mark into the infusion and the nurse treated it immediately with the protocol that’s in place of IV Benadryl and Pepcid. It stopped within 10 minutes. I finished the infusion start to finish in five and a half hours. You could say the emotion in me was quite heightened in the end because I clapped my hands from my chair. The nurses came over and said, “Yay.” I immediately knew that I finally had figured it out. Finally, I got through the infusion with not only a smile on my face, but the realization that God had answered a very long prayer. A four year prayer. But ‘hey,’ that is God for ya…His timing is perfect. He weaves circles. He hears your prayers and takes you on a journey. How long or crazy that journey may be or impossible even, no one knows. He, no doubt, sees you through it and only when He is ready and not a minute too soon…there is completion. Or is there?

I wasn’t prepared for the emotions I would have following my infusion today. I spent my time today reading magazines, scrolling my phone on social media, talking to the nurses, and reading the comments and prayers of so many of my friends and family who were, in essence, holding me up to the Lord and giving me a divine nudge to get through it. I never expected today to go well. I wasn’t doubting that God could help me, but I didn’t believe that perhaps I may get to an infusion where everything just clicked.

What did I do different? Why today? This week I had made the decision to finally start telling my story of my life thus far living with MS in a series of blog entries. I created my own blog. I was taking that leap. I was going out on a limb. I was moving way out of my comfort zone. Would anyone really want to read about me and my journey? Well, the beauty of the Holy Spirit that dwells within me allowed me to see today that life has no time table. God does not have an agenda that parallels with your life. God is not interested in the details of how you got where you needed to be today…He simply wants your heart. Your trust. Your willingness. Your surrender to His will for your life.

I came to know one thing as I left the hospital today. I realized that I do finally trust the process. I am elated that finally I made it through a infusion without a form of torture as I call it that was out of my control. I saw that I trusted in Him completely to see me through. I laid the infusion in His capable hands and I accepted the prayers and well wishes of others to help me through it. I didn’t have my own agenda. I knew I would get through it as I always had in the past. I knew that I would have to do this again in July which doesn’t seem that far away already. It’s almost February. I knew early on this morning that waiting for the perfect time to start my blog and share my journey doesn’t really exist. To be willing, is to take a leap into the unknown. I have nothing to lose. After all, my goal with my blog is to impact just one person’s life in a positive way. Spoiler alert…I do feel deep down inside my soul that I have a good chance of that happening. I realized as well that another path will come out of launching my blog….then another and another. The paths will weave around and around continuously and when I think God is finished with any of it, then it will start to go into another path. And it’s in a way endless. God will always keep working within me. He will always keep guiding me and never give up on me. Even when there are times with my infusion when I want to give up, He won’t let me. Today was a huge victory for me. It felt amazing. I do pray tonight I can stay home and continue on with no severe reaction to come in the next several hours. However, if that happens, it’s not failure. He will be right there with me. Today will go into tomorrow. And so on.

I am gonna hit click to, ‘Launch,’ my blog tonight. On number 8. You know what? Being out on a limb is not so bad after all.

*No glamour picture above here…just me getting my infusion. I like to drown out most of the noise at the infusion clinic with headphones when I remember them. I also have a blanket, heated pads under the blanket they provide to keep warm, a pillow under the blanket that my arm rests on for up to 7 or 8 hours in the same straight position all day. I use only one arm to type on my phone, scroll and eat or drink. The chair is a recliner with two attached tables.
*the picture above is my infusion pump and the new rate that we chose to deliver the right speed of the medication is the number 120. This will become the max number. Anything above this in my infusions let me to very severe reactions.

Published by MultipleSclerosisMamaB

This is my blog journey in writing of my experience living with Multiple Sclerosis since I was diagnosed at age 29 in 2009. My journey is not just wrapped up in my diagnosis and chronic is so much more. I am a daughter, wife and mother. I have created this blog to share all I have learned living with MS. Documenting all my experiences, highs and lows. How I juggle living day to day. My prayer is that this blog helps touch one person's life who is living with this disease or any chronic illness. I will share how my faith is now my strength. No matter where you are at in life....this blog is also for anyone looking for inspiration. I hope you will join me on my journey.

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