Day 12 2017

It was a long day today. The home health nurse was here around 9:30 to draw the weekly labs. We left for Siteman around 10:45 for a 1 o’clock MRI appointment (takes an hour to get there, and we allow time for parking and getting to the MRI location. I also had to get gas so we left 45 mins early). So appointment was for one and they did not get her into the machine and going until around 2:15, and we were there around 12:30. Got back to the truck around 3:40, stopped for some coffee, and got home somewhere around 5. Next week will be even worse since we have to be at Siteman for 9 am labs, then see the NO and then wait around to see the RO, and for her chemo meds to be filled.

The down for the day is that my wife’s speech is the way it was 6 mths ago when I took her to the ER. She had been having trouble typing and finding words again. Her speech this evening was really strained and choppy. We are both hoping it is just because she got worn out today. I am hoping it is better tomorrow. She has also told me she will not go back up on the steroids. I don’t blame her they have been hell for her. I am leaving the optune off tonight since she has some red patches on her scalp. I want to take advantage of having had to have it off for the MRI and her scalp some extra airing out time.

The up to the day is that we made some bread together. That created a few laughs since I was messing around with her on how to do some of it. The best part of the day was when I was saying goodnight to her. We were belly laughing about stuff that would normally make a person sad. I love her so much and I love how we both can find humor in tough times.

So here is hoping that Friday Jan 13, turns out to be an uneventful day and that my wife’s speech has improved some, and most definitely not gotten worse. The worse part about tomorrow for me is that at 10 am will mark exactly 27 years to the day and time that I got sick. It would take 5 years before I would finally be diagnosed with Chronic Fatigue Syndrome. I, myself, have not been able to work since 1994. So as hard as being a caregiver is, I also have the added stress of having my own illness to deal with. Life can be so much fun, can’t it :).

Thank you for walking with me on this chilly day.


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