Full Infusion For The WIN...

 Written 10/15/22

It’s hard to not focus on a chronic disease when it looks you straight in the eyes every day. 

Just a few weeks prior to my Ocrevus infusion I did a post on Facebook explaining a heartbreaking and huge decision I had to make due to the troubles of walking and trying to navigate through the new MS symptoms that tend to tag along with my daily routine. Here is my post...

Hanging Up My Dance Shoes …

In the 30 years of my entire dance career, I have never had a moment where I could not physically dance. I guess that this is that moment where frustration, heart break, pain and embarrassment all join forces to bring tears to my eyes. As many know dance is my life and most of all my outlet for letting go of stress. Yesterday 9/12/22 was the start of fall dance classes which I was extremely excited to be back on the dance floor. With my current MS symptoms, the tap floor felt like it had been pulled out from underneath me and all sound muted. My leg tightened and locked up but thankfully I took my cane to assist with balance. Every small movement I made I could feel the tension increase. I had to stop, place both feet firmly on the floor, stand my cane in front of me and start to mark steps with my hands. I couldn’t just let it all be taken from me. I got the chance to sit it out once things got messy, but I chose to still dance so my hands were my next best thing. My family says we can try dancing again soon but for me that isn’t soon enough.

This dance floor may be closed at the moment, but I hope another one finds its way to my dancing feet…

Still today things have not changed regarding my ability to take a tap class. My heart still aches, and mind still wonders if it will ever be possible. For now, I am staying as positive as possible and looking to find the door which is open for me.

I had a successful FULL dose of Ocrevus on September 29th, 2022. That is right! All went well with NO REACTIONS. I was very worried and nervous going into this round after last time. Things were not as eventful which I am truly thankful for. I was able to tolerate the medication at a faster speed and avoid getting Benadryl which many of us think I might be allergic to. When we got to the speed of which the medication was set to be administered at (rate 200) I began to have the sensation of my body getting ready to flush (familiar feeling from prior medication). I immediately let the nurse know and we dropped down to a slower pace and managed to finish the round and avoiding a reaction. I was done with the entire dose by 2:30pm and we started at 8:30am. We all went into this round wondering if I was going to be successful or have to break the doses in 2 like last time. Well folks "I DID IT". That is a WIN for us after all of the heartbreak. I did have a few moments of low blood pressure, but I felt fine so there was no major concerns with that.

Below you will find the time frame of how everything went...

810am Zyrtec

830am Tylenol

845am-850am 100 mg steroids

914am BP 120/84 HR 91

916am Medication started RATE 40ml VTBI 520ml VINF 0ml

946am TEMP 98.1 BP 115/75 BP 79

947am RATE 80ml VTBI 497ml VINF 23ml

1012am TEMP 98.1 BP 111/65 BP 81

1015am RATE 120ml VTBI 461ml VINF 59ml

1045am TEMP 98.1 BP 109/72 BP 84

1045am RATE 160ml VTBI 400ml VINF 120ml

1115am TEMP 98.1 BP 100/71 BP 85

1115am RATE 200ml VTBI 318ml VINF 210ml

1135am TEMP 98.1 BP 117/79 BP 89

1135am DROPPED down to RATE 160

1159am TEMP 98.1 BP 115/76 BP 84 (Remain at RATE 160)

1232pm TEMP 97.3 BP 107/79 BP 94

1234pm RATE 160ml VTBI 104ml VINF 0416ml

109pm BEEPED FINISHED MEDICATION

112pm Unhooked from machine but maintain IV site

114pm TEMP 98.1 BP 109/73 BP 95

211pm TEMP 98.1 BP 110/72 BP 96

213pm DISCONNECTED/ RELEASED

My husband was amazing as he took care of our 2-year-old son. I am beyond blessed to have the care and support from him. I was also very blessed to have my mom with me during this little adventure. Yes, she may have learned a little more about my MS history and complications while informing the nurse but sometimes you can't hide everything from your loved ones. My mom is truly amazing, and I am thankful to have her love and support. Plus, it gives us mother and daughter time which has been put on the back burner for quite a while. Here is a silly photo with our jolly rancher-colored tongues.

We did make our 2.5-hour drive home after my infusion because I was feeling good overall. I was achy and tired but it didn't stop me from climbing in the car so I could be in my own home and bed to rest. For the next few days after my infusion, I was reintroduced with nausea, body aches and extreme fatigue. I did not have spasms or spasticity in my legs though. I slept quite a bit and stuck to drinking liquids because nothing seemed appetizing. It has been about 2 weeks now and I still struggle with nausea, fatigue and moments of rapid heartbeats (a side effect) which tends to make me feel not so good. My walking problem has shown its face once again, but it won't stop me. I have been asking for help more and using every moment of downtime as my recovery. My next blog post will update you with what new approaches I have been taking to improve my lifestyle. I just wanted to make a quick post infusion update for all of you.

STAY TUNED...

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!!!