Finally, all the moving pieces required from the wonderful world of managed care, aka, Capital Blue, (required appointments, lab work, precertification for specific infusion center, and my medication) I was cleared for my first infusion of Tysabri!
It’s been several months of uncertainty, doubt, fear, and yes, why me? Why do I have to endure this progressing? Why do my everyday tasks, like showering, getting dressed, cooking, and household chores take forever? Is this ever going to get easier, Lord? I’m really so sick of being sick!
One of my biggest adjustments has been having my license revoked. I understand the why, but I needed to mourn and live with another loss of my independence. It was time to gracefully accept help from others. This was difficult for me. I always enjoyed helping those in need, not reversed. As my BFF is quick to remind me, “Don’t take away the joy from those who want to help you.” Ugh! Does she have to be so right?!?
Hubby and I feel so very blessed with the overwhelming offers of help for transportation, meals, shopping or anything we might need. The love, support, and care we receive from our family, friends, and church members has been amazing. I can see the peace overcome my hubby as well. He can go to work knowing I’m in good hands. Priceless for me!
Of course, the first date available to begin treatment, hubby had to attend a mandatory conference for work. I really wanted to start treatment asap and hoped he didn’t mind not being there…he agreed! Yes!!! Today was one of those days where my newfound friend from church, Allie, could take me for my first infusion.
We arrived at the infusion center, checked in, and patiently waited for my turn. I found myself nervously smiling as I glanced around the jam-packed waiting room. I struck up a conversation with Grammy and Grampy sitting next to me (imagine that). “This is my husband’s first chemo visit,” Grammy shared with a smile. “We’ll be “infusion buddies!” An instant bond was made! They called my name. I quickly told Grammy and Grampy, “I won’t say good-bye, rather see you later!”
I was taken back to the infusion area. There I was greeted by my nurse, Pamela, who quickly seated me in a comfy La-Z-Boy type chair, complete with seats for my family, a TV, snacks and drinks of all kinds, and plenty of room for her equipment and meds. She made me feel comfortable and eased my nervousness!
Pamela inserted the IV into a vein and was ready to administer my first infusion of Tysabri. I quickly turned my head to look out the window. She asked, “Are you okay?” “Yes, just can’t watch!” She chuckled and carried on sharing her routine information. “The actual infusion would take one hour and we will keep you an additional hour to watch for adverse events or allergic reactions (skin irritations, heart issues, dizziness, migraines, to name a few.)”
Like any MSer, you can take a nap anywhere, anytime, and so I did. That’s when I heard a voice, “Excuse me?” I promptly opened my eyes, and there he was, hubby!!! Was I ever surprised!!! He came to visit during his lunch break and brought me a bonus snack…a dark chocolate, sea salt candy bar! As he knows oh so well, everything is better when chocolate’s involved! Love this man!
My medicine was infused, my hour of observation was complete, with no adverse events or allergies noted! Pamela removed the IV, scheduled my appointment, and provided discharge instructions all with a smile. “You have no limitations…go home and enjoy your day!” “We’ll see you next month!”
I did it!!! Really wasn’t that bad after all! With a few more infusions, I should be able to see if Tysabri is working. I keep a daily journal to record my physical status, accomplishments, and monitoring of my symptoms: are they stabilized, improved or worse? Paints a clear picture for my doctor and me through this treatment.
Counting my blessings for this option to try. God remains oh so good!
All information discussed and blogged on So I Have MS…Now What? represents my personal experiences and opinions only. It's my recommendation, should you have any questions or concerns, to contact your neurologist or physician to discuss what is best for you. Please note, I am not financially compensated by any company or manufacture. My sincere thanks to Motion Therapeutics for helping this non-technological MSer set up this blog! Have a blessed day!