Week One ☝🏻
Let’s get the BAD news out of the way.
Everything hurts, I feel awful, I can’t stand on my own and my seizures are persistent as ever. Treatment is not going as planned. THE END. (Okay not really, but that’s the gist of it. So if you’re short on time or don’t want to listen to me whine, skip down to the GOOD news.)
Another brutally challenging day. I made it through two treatments before I fainted and seized once again (despite getting up VERY slowly and all the appropriate medications.) I have not been able to make it through an entire day without Ativan or Versed because without them my body is constantly being triggered. This is not a long term plan nor are they drugs I like to put in my body, but the medical team at Infusio is just trying to keep me stable in order to do the appropriate treatments.
I ended up having severe chest pain and numbness of my limbs when one of my IV bags started too quick. We tried again later, but slower and my heart rate still jolted up in the high 100’s and my oxygen sats quickly dropped to 77. (I’ve been feeling so sh*tty overall my first instinct was that the pulse oximeter had a low battery and wasn’t reading accurately. Lol, this was not the case) After some more pain it resolved, but before I could get too comfortable another seizure came. This time with excruciating hip nerve pain. (You know your pain level is at an all time high when your tears, sweat, snot, and drool are pouring out of your face in front of your partner who you would like to have think of you as attractive, yet you just don’t give a f*ck.) This was the last thing I remember along with trying to muffle my screams biting into a pillow.
A couple hours later I was woken up by Daine and Dad saying it was time to leave for the day. I was like a super grumpy toddler coming out of an afternoon nap. I didn’t know where I was, who I was, I couldn’t focus my eyes or walk on my own. I was not happy. (I did get to eat chips later and was less-not happy)
Two more seizures, but thankfully of lower intensities. Multiple IV lines because clotting and severe chest pain again coming out of the second seizure that radiated down both arms and made breathing very difficult. (Similar feeling to when I took a horse hoof to the rib cage, you know that feeling? Right.. probably not, that’s just me but you get the idea)
I ended up sleeping in the massage room most of the day because each time I sat up or walked I began to tremor, faint or seize so we tried to avoid all stimulation and it seemed to help. There was overall a few mores smiles today, partly due to the owner of Infusio coming to speak with me.
He assisted with lying me down during my second seizure and had also been there for the first episode on Day 1 (so I am told). He has seen first hand what this disease is doing to my body and on he came to address our concerns about next steps and if the clinic would be keeping me or not.
This is the GOOD NEWS. The really good news.
Philip (the owner of Infusio) ensured me that they would not be sending me home or giving up on me. In fact, they were going to create a new treatment plan for me lasting 4 weeks for the additional care required for my case. They are also working on getting me into a neurologist next week to help manage the seizures as I go through treatment.
Truthfully, I was shocked to have so much support. Philip is so sweet. I could hardly get out a thanks before being flooded with tears of happiness and pure fear. All I’ve been wanting for is for the clinic to say I could stay and do treatment, yet after how challenging this week was on my mind and body 4 weeks seemed unbearable, but going home without hope would be even more so. Plus, maybe it well get easier, who really knows.
Well it’s time to get comfortable, because Beverly Hills is keeping me for the long haul and fear aside, I’m ready and hopeful once again.
P.S. This new red tee is now available for order: http://lexiandlyme.com/product/ladies-tee-red/