Notes From Supergirl

My Diary from the Trenches

Day 640

February28

I didn’t realize how long it has been since I’ve posted. The last two weeks have been utter craziness and I can hardly find time to get anything done. As far as my health, everything is fine, but I had a sinus issue I just couldn’t shake so I ended up going to an ENT last week. I’m back on another antibiotic, but the good news is that my sinuses didn’t look that bad. The doctor said I was no worse than any other normal patients he sees. I’m finally starting to feel better now. I was having terrible pain in my face and a lot of sensitivity in my teeth. This was all explainable by what my CT showed was going on in my sinuses.

In the midst of all of this, just to add to the excitement, we’ve had to make some adjustments in my youngest son’s school schedule. He is now home with me in the afternoons and I am back to having virtually no time to get anything done. Let me be clear that I am not complaining about him being home (it is what he needs right now), I’m just trying to figure out how to fit more hours in the day. I can’t seem to get out of bed any earlier than 6 and when my babysitter is here in the afternoons, I’m scrambling to get work done before she leaves and we need to start bedtime. By bedtime, I have very little energy left to do much at all.

I think the reason I haven’t blogged in so long is because I didn’t want to sit here and complain about all of this stuff. I’ve been feeling run down and sluggish and dealing with a lot of emotional stuff as I try to keep my children healthy, happy and well-adjusted. I’m also trying to work as much as I can because I love it, but also because there are projects that I feel very committed to and I really want to do them. My blood counts are fine, but nothing to get really excited about right now. Platelets went up but white counts went down. I actually have my biopsy scheduled for next week and I am already a nervous wreck. Everyone is assuming everything will be fine – everyone except me and another close confidant. I’m not assuming anything is wrong, but I’m scared for obvious reasons. I’m not going to focus on what-ifs; I’m going to focus on being positive and optimistic. But I can only imagine that I’ll be a mess next week as I wait for results.

In the meantime I’ve ventured out a little more. You would think it would be good for me, but I know how cautious I need to be about being in public so it has the opposite effect on me. Yesterday I ended up sitting through a pre-school gym class for an hour (I was supposed to just drop him off) and today I broke down and went shopping for costume materials at the craft store. I confessed to my doctor about the gym class and he just shook his head and reminded me that I need to be careful. I was careful, but I fear airborne germs, particularly from children. This week I’m also going to do my first social outing at a friend’s house. I feel much safer about that and I’m really excited to get out of the house.

I’m also tapering down my immune drugs now. It will be interesting to see what happens in the next two weeks because my blood counts could either improve or drop, according to the doctor, and I am also opening the doors for a potential GVHD reaction. But fingers-crossed that counts go up and no GVHD! I really look forward to the days that I don’t have to take 7 or 8 pills twice a day.

Okay, I think I’m going to kick my bottom out the door to run a little because I know I’ll feel better in the end. I bought a pair of hybrid running shoes that are a cross between regular sneakers and the barefoot (with toes) style. The first run was great. The second run on the treadmill was painful. I’m curious if anyone out there has had any experience with barefoot running and has any thoughts on it? I’m not sold on the idea that it is better for me, but I’ve also heard it can take some time to adjust.

More to come soon …

One Comment to

“Day 640”

  1. Avatar February 29th, 2012 at 11:04 am amy Says:

    PLEASE remember to REST. It’s not a luxury, it’s a PRIORITY for your RECOVERY!