I have a new enemy and it's name is Benadryl. Seriously, that stuff is just not cool. Now that that is out in the open, I'll take a few steps back and tell you about last week.
Last Monday was the first day of Spring, so there was a snow storm. The snow was coming down so heavily in the morning that we decided not to make the trek in for IVIG. I hated to cancel as it would mean a make-up day the following week, but it was the right thing to do. By Tuesday morning the snow had been replaced by a nice steady stream of freezing rain. However, the roads were ploughed and we have studded tires, so we decided to brave the elements. As an aside, it was so icy Scott had to wear cramp-ons to wheel me down the ramp (I was not in the mood to start my career in wheelchair luge). OK, I make it to IVIG and everything is great, until my first rate increase... (IVIG is a bottle of clear, goopy blood plasma that is given by IV. The drip rate increases throughout the infusion). I started to feel chilly and asked for a blanket (this in itself is rare). Within five minutes I was shivering uncontrollably and realized something was wrong. I rang the bell for the nurse and a kerfuffle ensued.
It seemed I was having an allergic reaction. It was dealt with quickly and skillfully and I am fine. I was given IV Benadryl and Steroids and then subjected to a number of tests and observations. Apparently this is not an uncommon occurrence as IVIG is a blood product and no two bottles are exactly the same. However, I now have to take precautions before each infusion. Enter my new enemy number 1 - Benadryl. I am very sensitive to the 'may cause drowsiness' warning on all drugs, so 2 Benadryl at 8 am does not make for a pleasant or alert day. IVIG is tiring enough, but I have now discovered a new level of foggy, groggy exhaustion. I do not recommend it. I'm really not sure how physio and ot are going to work out on IVIG weeks now, but I'll figure it out. My neurologist did say that we could try Reactine if Benadryl is too much - I am going to ask about this next week. I realize that many people who get IVIG have Benadryl beforehand but I don't know how they manage. It would be less annoying if I only had 1 infusion day, but I go for 5 days every two weeks... that is a lot of time to be down and out. No thank you. Course, it is what it is. I will adapt.
In other news physio continues to go really well and I am getting more and more mobile. I did something yesterday that I have not been able to do in over a year and a half - I stood up and hugged Scott. It may not sound like much, but we both thought it was pretty awesome.
On a more practical note, I'm using the rollator at home about %60-70 of the time. This is going really well and I'm figuring out how to get by (using the basket and seat to carry things). As of today I am cleared to try taking it into the world - possibly the grocery store where things are level and there is lots of room. This both excites and terrifies me. I'll be sure to blog about it next time...
Ciao for now.
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