Over the weekend, I was working on a couple of posts for MultipleSclerosisCentral.com. None of them are complete just yet and on Monday morning I was trying to finish at least one. I even took my computer with me to the neuro’s office to get some work done while I was tied to an IV pole, but it didn’t work.
Why was I at the neuro’s office? It was time for my monthly dose of IV Solumedrol. The infusion center was packed full. Part of that was due to patients fitting in their treatments before the Thanksgiving holiday (like me), the other part was due to the number of patients experiencing relapses.
I walked in at 9:20 AM and found only one empty chair out of six. The seventh chair was full of pillows and a couple of blankets. These are important items, so they deserve a chair of their own. LOL.
While I have been going to the center for monthly pulse steroid treatments (since July), I’ve been sitting next to a woman receiving monthly IVIG (Intravenous Immunoglobulin) treatment. She also has MS and is part of the CCSVI (Chronic Cerebrospinal Venous Insufficiency) treatment trial in Buffalo, New York. When I arrived, we traded big smiles and proceeded to catch up on each other’s lives.
As my IV got started, another patient was finishing their bag of Solumedrol. As my favorite IV nurse “J” began her traditional “first-timers” home instructions and “heads-up” on typical steroid side-effects, the room was quiet with the many books and newspapers being read. I got out my computer.
Not long afterwards one of the pump machines began beeping. Beep. Beep. Beep.
Nurse J asks, “ok, whose is that?” At least two people point to me. What? I only got started, I shouldn’t be beeping. So I checked the tubing for bends or kinks. None to be seen, but straightening out my arm got the machine going again. Bizarre.
The premature beeping happened at least three other times. I guess the “kink” in my elbow or the pressure of my forearm on the armrest was just enough to stop the even flow of medication. I worked hard to find an arm position which didn’t cause the accusatory beeping.
Then another patient was done, followed by third. The third guy was somebody in the middle of his Solumedrol round, it being the 3rd of five days of treatment. He was smack dab in the middle of the worse effects. I really felt for him. But Nurse J kindly pointed out how much better his walking had become in just a few short days. He did look pretty steady with his cane.
A new person showed up, this being her first time using IV steroids. Her previous doctor had only prescribed oral predisone before. It was really fun talking to this young woman who is at the beginning of a graduate program in social work. She works as a volunteer firefighter in Baltimore and even saved an abused rescue horse while in her teen years. Very fascinating lady who seems so very comfortable with her diagnosis. She also received the “first timer’s” instructions and with the room being more empty, I chimed in - “and don’t make any big decisions” - to which Nurse J added - “and if you feel the urge to engage in any road rage, make sure that you don’t have any weapons in the car.” We all got a good laugh out of that one.
So then, it was just the IVIG MS patient and myself alone in the chairs. Side note: Since I tend to get headaches with IVSM if the drip rate is too fast (for me), we use a very slow rate and I’m usually there for two hours. I commented on my surprise at just how many newly diagnosed MS patients were there for treatment this Monday morning. As this infusion center serves the entire neurology clinic, it isn’t exclusive to MS patients. However it wasn’t long before another patient arrived.
This next new patient was accompanied by the MS nurse on staff, often the signal that this patient is REALLY NEW to MS. Fear was written all over her face. As Nurse J began to explain the possible side-effects of steroids, which can be unnerving for the uninitiated, the woman announced that it might as well be today since she was due to give herself her 2nd ever Betaseron shot that evening. Like I said - very new to MS!!
My new IVIG friend and I continued our conversation. Both of us have “been there, done that” for years, she longer than I. Perhaps it is the fact that the steroids seem to be working for me, and the fact that she has been through lots over the years, but our conversation continued in a very cheerful manner. I even learned that she had only done the full round of IVSM twice in her MS career, and I’m tempted to stop counting as I have to use fingers on both hands.
Then my IV pump began beeping, but for good reason this time. I was done!! As the assistant nurse was removing my IV line, I talked more quietly to my IVIG friend mentioning how the faces of newly-diagnosed people (so scared at this point in their journeys) makes me want to reach out to them.
Because of my blog, Brass and Ivory, and because of HealthCentral, so many people have emailed me over the years. It feels really good to know that something I’ve said or shared has been found to be helpful in some way. Being in person makes me want to reach out, but I stay respectfully quiet. Nobody likes a pushy person.
As I left the infusion center, it was only this scared new patient and my friend in the chairs. I knew that a gentle ear would be offered if it were needed. I hoped that it wouldn’t get busy too quickly and that the kind of support that only “those who really know” would be provided.
This is one reason I really like our MS community. We are made up of such a variety of positive people who are able to reach out to each other and to those who stop by HealthCentral with their questions and fears.
THANK YOU for making this a special place.