Because of the new problems I have been having with side effects recently, Dr. Neuwelt added a new pre-medication. So before the Benlysta today, along with my customary Benadryl and Tylenol, I also received IV Dexamethasone. This was to deal with the vertigo, nausea and headaches that intensified after infusion #4. I am also having muscle spasms in my arms - not painful - just annoying.
Things went well during the infusion. I met a different nurse - Chris - who is a GEM. She is my ideal for what a nurse should be - skilled and efficient but also compassionate and warm. She is also funny. All this helped to reassure me today. The other nurse has been just fine, but I felt better about the atmosphere in general today. I met two other patients and we swapped stories while receiving our magic potions. I am hoping to re-schedule my future treatments to Thursdays. There's no reason I can't try to enjoy the experience a bit more, right?
Even if it turns out that Benlysta doesn't work for me in the long run, it has absolutely given me something I never expected. Throughout this experience, I have gained a new community. Through the "Benlysta Buddies" and "Lupus Disease Sucks" groups on Facebook, I have "met" even if only in a virtual way, new friends that understand what I'm going through. These are people with a wealth of wisdom, experience, love and support. I now have confidants and cheerleaders who have been where I am and who are happy to listen to my woes and to share their stories with me. If you are reading this, Jeremy, Ashley and especially my dearest Meredith, I hope you know I am talking about you. Thank you from the bottom of my heart!
It's been a very long day so I think I'm gonna sign off. I think the Dexamethasone may be working, but I'm still a little too fuzzy-brained at the moment to say for certain. There was a new wrinkle in my evening...I started feeling nauseous again so I picked up the bottle of oral Dexamethasone and opened it - I got distracted by a phone call and now I don't know if I took a pill or not...sigh...I think a good night's sleep is what's in order now.
