I’m seriously depressed today and I don’t know what else to do but journal it out. I’m not a crier, but today I am crying tears of the broken-hearted.
Five months ago, I went in to have my monthly IV therapy for multiple sclerosis and my nurse for the past eleven years was just.. gone. There were two other nurses I had seen around the clinic handling me… not listening to me about my horrible veins.. poking and missing or blowing my veins SIX TIMES.
Because no one mentioned where she was, I asked, “Where’s Andrea.. Is she out sick today?”
“No, I think she retired, but I’m not sure”.
I bawled.. you will never know how important my angel nurse, Andrea, was to my life. To my husband, Kenny’s life. To have her gone, without any kind of warning was devastating!
For a year after my diagnosis, I was on a weekly injection called Avonex. The way it worked was, it brought down my complete immunity to keep MS from attacking my brain and spinal cord. As a result, it felt like I had the flu for 2-3 days of EVERY week that I took it for a YEAR! It was a horrible existence.. I was in the process of recovering from a major attack on my brain stem that left me vision impaired and unable to walk or even turn over in bed without being so dizzy that I would wretch everything up, even if I hadn’t eaten in days.
So imagine if you can, recovering THAT, and then your husband has to give you a shot every week that makes you feel like you have the flu for half the week. Fever, chills, nausea, headaches, muscle aches… the whole shabang. By the end of that year, I had to tell him that I couldn’t live like that.. and if that was the only therapy available to me, I’d rather take my chances with the disease.
Luckily, a new drug had been out for a year that had better results and tolerance, but brought a lot of risk with it. 75% of everyone you know has the JC virus, and they never know it.. it lives in your brain and you never have the first symptom. The way the new IV drug, Tysabri, worked: it crossed the blood brain barrier, allowing it to pull down the immunity in your brain, only… no flu like symptoms from this immunotherapy. But if you have the JC virus and you are on Tysabri, that leaves your brain without immunity, and could potentially lead to another virus, PML (progressive multifocal leukoencephalopathy). If you get PML, without “brain immunity”, you could end up dead or vegetative.
Back then, the only thing they knew to do about PML was pull your blood plasma, remove the Tysabri, and wait for your antibodies to cross back over the blood brain barrier.. which takes about a month. So if PML hadn’t killed you or left you vegetative yet, it had free reign in that month to give it another crack.
Enter Angel Nurse Andrea. She came into my life at the point when I had given up.. I was ready to just die: to be done with MS, with its horrible symptoms and Avonex, with its horrible side effects. And if you think I was an easy patient, you would be very, very wrong. I spent my first infusion with Andrea ignoring her, feeling very sorry for myself and angry at the world.
As she’d stick a butterfly needle in my vein, she always said very softly, “I’m sorry”.
She became one of my very dearest friends.. one of maybe ten people I always wanted around me.. who makes a difference everyday of their life.. because they are just GOOD. Good person. Good soul. Good at what they do. You know.. GOOD.. ANGEL good.
So once a month for eleven years, I got to spend two hours with probably the best person I’ve ever met. Kenny would be with me and the three of us could fill that two hours with catching up, laughing, learning, teaching and sometimes crying. She was amazing and I absolutely love her from the bottom of my heart and soul.
She came to my art openings. 🙂 What nurse does that? AN ANGEL NURSE. Did we cross over some nurse/patient line, health care professionals frown at. HELL YES! Am I sorry? NEVER! I will adore her loving soul till my dying breath.
She was the type of person who should be in health care. The ONLY type of person who should: a natural nurturer and healer. She went the extra mile for ALL of her patients because she CARED about them. She changed me and made me a better person.. made my life better!
We always hugged and said “I love you” before we parted.. excitedly planning to tell each other about how our activities for the month turned out, when we saw each other next time… except I didn’t know there would be no next time. That six months ago, would be the last time I would get to do that. 🙁