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Posted on 19. March 2015

Popcorn Tuesdays

By April McGowan

Last night, my son came in the living room and said, "I love Tuesdays because we get to watch something fun and we always have popcorn." He looked so happy. And that really struck me, because up until about five months ago, Tuesdays were not fun. Tuesdays are the day I do my immune globulin (IG) infusion treatment for my common variable immune deficiency (CVID).

I've blogged a couple of times about how my attitudes have changed since I started treatment for CVID. I started thinking of my IG infusion as "immunobuddies" rather than an enemy intent on making me feel fatigued, achy and stealing my night and part of the next day away. I also stopped looking at Tuesdays like I wanted to skip them altogether. Instead, I started to think about how I could make this routine into something a bit more enjoyable.

I used to just try to keep my stress low on Tuesdays and make an easy meal before I started my treatment (I won't share with you the perils of trying to cook while carrying around a pump - let's just say getting your lines caught on a cutting board makes you want to plan ahead!)

But now, not only do I get dinner all prepped and finished before I start my infusion, but I also make popcorn. Popcorn? Yep. Because I've turned Tuesday into "low stress, let's have fun" night. We'll turn on a show I love or put in a movie we've been waiting to see.

My kids used to say "Oh, it's your treatment night" in an empathetic, sad voice. Now, all of us have something to look forward to. My two hours pass, and we have a nice evening together. I'm still curled in a ball in the chair after my infusion is over, but at least I'm in pretty good emotional condition now.

And, I get popcorn.

What sorts of things do you do to cope with a rough time?


Comments (1) -

8:58 PM on Wednesday, September 30, 2015

I start craving my infusions a couple of days before my infusion day.  On the morning of my infusion day, I start dreading the infusion.  I really don't like needles  and have a hard time sticking three into my stomach.  I have learned that I am so much more comfortable for the days after the infusion if I sit still during the whole infusion.  Luckily, my husband caters to me and I sit in front of the t.v. while I infuse.  So far the infusions are helping.  I go for a couple of days after infusing without dealing with explosive diarrhea.   I also take fewer naps and can deal with my teenagers and husband with more patience (I used wake up with the energy level of someone who had just finished an ultra marathon).  The biggest bonus is that I have been able to stay at my elementary teaching job (my passion).  I am in week 5 and have not gotten sick yet.

The down side is dealing with my insurance company.  I am supposed to infuse tomorrow and it still has not approved this next "round" of treatment.  If I am supposed to do this therapy for the rest of my life, how can I be constricted to "rounds" of therapy.  The woman at the insurance company was really sweat, though, when she told me that if my therapy was so important to me that I could come out of pocket for it while the company worked to approve this next "round."  Clearly, if I could fund $7500 a week, I wouldn't need the ridiculous approval from their company.  Honestly, how many people do they have that fight this hard to stab themselves in the belly with three needles and endure the discomfort of the infusion?   I didn't see a line of eager people behind me.

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