Yesterday was a bad day in the life of mine! All within the same day I lost my new job and missed my appointment for my Ocrevus position! Yes, you read that right! I have a horrible time remembering anything and this time it messed my life up majorly! Recently I Accepted a work from home position with TTEC with all intentions of being done with my infusions for the next 6 months this week, allowing me time to recover and able to start training on Sunday at 10am. Well that is what I was hopeful for at least. Well my memory screwed me up and I have the wrong day wrote on my calendar for the infusion to be today the 23rd of April, but it was actually yesterday the 22nd. Missing the appointment then forced me to have to reschedule the infusion for Monday the 27th at 7am. Thus, causing issues with the training schedule I am 100% responsible for being logged into every day with no excuses allowed! Now I am trying to resign from my position, send back the computer and look for another position all while trying to figure out if my life is always going to be this complicated. Now I have this large box sitting in my living room and I have no idea how to send it back, I have tried to contact TTEC multiple times asking how to proceed with my resignation to the position because I can’t seem to find the information anywhere! Forgetting the name of a V.W Bug, is one thing but forgetting and missing an important infusion is not good. I know my newest lesion in my brain is directly on a spot that handles memory and cognitive function, but I really hope that my new medication reduces the lesion and heals the damage that has been done so I can get back some of my memory.
All of this is my fault and I know and understand that as a person with a chronic illness and one that effects my brain that this situation happens and when it does I will have to role with the punches and go with the flow. Still doesn’t make it any easier when you have to choose to have a job or care because you forget an important meeting and have to change your life around, but I am kind of glad this happened because honestly a company who doesn’t respect your need for care like a CHEMO and the need to reschedule training for a different week is a company you probably don’t need to be working for while fighting a chronic illness.
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First off having an Immune depleting medication done during a huge global crisis sucks and makes everyone go crazy. So during this time I have been locked down at my house no one in or out except for major needs. April 7th, 2020 during the world pandemic of COVID-19, at 8:00am central time, I had my first half dose of Ocrevus, the wonder drug itself. 6 hours spent hooked up to an IV drip was definitely a very long day. The day before, knowing the side effects I dropped my niece off with my best friend and her family, took a trip to the local Wal-Mart to grab final supplies before I became Immune Compromised. I did what I could anyways, as her birthday was also in a couple days and Easter today. I tried to go to bed early and not think about anything else after that. Once my alarm went off, I was up and changed into my new favorite shirt. (see Photo) I UN-braided my hair and added a little makeup. The drive to Pensacola was very nice and beautiful in the early morning. My infusions take place at the Sacred Heart Infusion Center in Pensacola Florida. Its about a 45 min drive. I was so scared as I was alone, having my spouse in a different country in his own lock down, and unable to have anyone join me in the center there was no way I could find someone to hang in my car for 6 hrs., all while I was inside getting my infusions. I was worried what would happen if something bad was to happen during the infusions. The check in was easy as I walked up to the hospital, as they asked me questions, took my temp, and gave me a sticker stating that I was checked in for Covid-19 screening. I was walking in with 3 bags, 1 was my weighted blanket and pillow, 2 was computer, snacks, water bottle, and 3 was purse with headphones wallet, masks, and extra water, so my arms had been loaded but I was prepared for the day. Check in was fast and simple, I was handed a couple forms to fill out, and was called back within the first 5 minutes. My infusion nurse sat me down and we went through the Ocrevus medication information and side effects. She made sure I understood the risks of the medication. After that we started the IV, blowing one vain we started the IV in the other arm. First med was Benadryl and Steroids to lesion the side effects, they took about an hour to infuse. The Benadryl worked well also making me a little sleepy.
Once the Ocrevus was started my day went well, my amazing husband stayed awake in order to talk to me throughout the day. I was nappy so I took a nap here and there, but I did well. Not one side effect except tiredness! So once the infusion is finished, I must sit for an hour of observation time. I was able to leave around 1pm and I stopped for some fries and a drink. The next couple days went around fast, a small headache and some major back-pain I feel so lucky that this infusion went by so well. I hope that it goes well my next infusion and I feel very grateful that I seem to be the lucky one. Anyways thank you for reading and I hope this brings you some information in my life and don’t forget you can now order my stickers through this website! Check it out on the Artistic page! Also I have clothing for sale! Go to : https://www.bonfire.com/store/the-chronic-artist-20 Thank you! |
Nikki
Multiple Sclerosis warrior, who is a striving artist and a enthusiastic world traveler. Archives
April 2020
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