Ups and Downs

It's been a bit of a roller coaster the past few days. Sometimes Bill tells me he thinks I would feel better if I just let myself get angry. Well, Sunday was that day...
I do not feel well on Sundays. I believe it's the Methotrexate shot I give myself on Saturdays but I get a terrible headache during the night that continues the next day and I am exhausted, just worn out.
This Sunday, after church, while the kids were in Sunday School Bill drove me home so I could rest. This is when the grumbling started.
I was angry that I could not enjoy a glass of wine or a cocktail with friends the evening before at our annual (but small) Barger Christmas Party.
I was angry that on one of the two days that we can spend together as a family I would be spending it alone in bed.
I was angry that I don't remember what it feels like to feel really good and not just OK.
I was angry that when someone asked me "how are you doing?" I feel like the only response is I'm OK.
At one point, I yelled out the bedroom..."and I am angry that being angry doesn't make me feel any better."
So, that was angry. None of which was displayed in front of Jake or Emma. I continue to remind myself that my children learn more from my actions than my words.
Yesterday I had a doctor appointment. The labs look good. Again, the frustration in this is that good means unchanged, not "better" or "healed" or "not sick anymore"
The doctor suggested a new approach to the methotrexate to try and offset the way I feel on Sundays. Instead of giving myself the full dose on Saturday night, I will give myself a half a dose on Saturday night and the other half on Sunday morning. It's worth a try. Now that I am no longer freaked out about giving myself an injection one poke or two, just doesn't matter.
It's also time to start tapering the prednisone again and see how I do. We have a schedule in place that should have me down from 40 to 10 mg in the next eight weeks. It's a slow process because of the effects it can have on my adrenal glands but slow and steady is better than no change at all.
The next medical update will come next week after my appointment with the neurologist. I have to have another one of those EMG tests done. They are scheduled about every four to six months and there is really nothing about this test that I enjoy. I actually think they get worse each time only because I know what to expect now. Bill's coming with me. I am hoping that he will have some really good questions or insights for the doctor. By the time the test is over I am just so relieved that my mind goes blank and I can't think of anything to ask and I don't retain the information that is shared. He's my wingman.
I have a great quote to share with you that I got from my friend Chris Murphy. It's the motto her parents (John and Cindy) wrote and live by....

Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body, but rather to skid in sideways, chocolate in one hand, wine in the other,body thoroughly used up, totally worn out and screaming "WOO HOO,what a ride"

Have a great day.
Kris B