Thursday, March 10, 2016

The Waiting Game.....hopefully One. Last. Time

On January 7th, when we started talking about me taking Humira, I never really dreamed 2 months later, and I would still be going through the motions to get there. The Humira was actually delivered last week so 6 injections are in my fridge. I go see the infectious disease doc next Wednesday, the 16th. I truly believe I can schedule my training and my first 4-shot dose after that. I am really hoping for the next week.

I had a bit of a setback last week. I have done as little as possible outside of work since January. The results of the colonoscopy were scary to me and it made me realize that as badly as there are other things I want to do, I want to keep my colon worse. I have since learned that new strides are being made to not immediately go to a bag if you have to have a resection, but I have lived with my mom having part of her bowels missing for over 30 years and it has a lot of unpleasant problems as well.

Last week, I went grocery shopping on Monday night, went to Springfield on Tuesday, fixed stuff for birthday night on Tuesday night, did AWANA Wednesday night, and helped get ready for Grand Prix on Thursday night. For most of my life, this would have been a typical week. Thursday afternoon, I started feeling really bad but assumed I was just tired, after all, this was a lot more than I had done forever. By Friday morning, it was clear I had a sore throat and a cold. I tanked up on cold medicine and went on.

In the middle of this, I had chosen last Monday as my day to wean off the prednisone. I also, decided since I was coming off the prednisone, I would start counting calories again and try to get some of this last prednisone weight back off. Of course, it is natural to want to eat more fruit when you do this. Just for the record, fresh fruit and UC don't mix well if you are having a flare.

This pretty well set me up for a bad time. By Friday evening, my UC was in full flare. Saturday, I tanked back up on prednisone and cold meds and made it through our Grand Prix as well as went with Andrew to Champaign to get supplies for a job. I really didn't feel too bad but knew it was time for some down time.

I stayed home from church Sunday and from work on Monday. I called my doc Monday and got scolded regarding the tapering on such a busy week. What was I thinking??? Well, yeah, after I realized it, I thought the same thing.

So, today, I think I am feeling better. If not really, at least prednisone induced feeling better and that is doable for now. I am so ready to start the new meds and feel totally prepared. If nothing else, I don't think there has been an inch of my body that hasn't been inspected inside and out in the last 2 months and everything looks good except the UC, that's a bright side thing.

I did go ahead and give up hope and getting back to AWANA and I let my friends in the LTC band know that I wasn't coming back for this semester at all. As badly as I wanted to, it is kind of a relief just to have it out there. My evenings now can be planned to be resting most of the time.

Andrew is pretty well booked this month which is a great comfort to me. He has started deciding that if he is doing a good sized job (which he is now), that he will commit to 4 days a week, that way, when someone has a little emergency, or a little job, he isn't making them wait over a month. It is going well. I am so happy that he loves what he is doing. I really don't think I have seen him love his job since he left the tire and lube shop. My only regret is we should have done all this when that happened.

I am not posting this on fb, I am SOOOO tired of feeling like I'm whining. I am really putting this on here as a diary for myself of where I'm at. And, I thought sometime in the future, if the Humira works for me, some of my experiences might help someone else going through it.  So, if you stumble upon this on your own, here it is.