September we had a good turn out for cg support. I had several weekends to get things done and most weeknights I was able to get to bed by 9:45. His catheter leakage was under control and he was sleeping well at night. He was having strings of good days with tolerable pain. Regular BM, showers and time to see friends. I took him to a baby shower. He had lunch with friends a couple times. He was enjoying being outside. We finished laying the patio bricks that replaced the deck so he can roll outside and hang out with us while we grill. He bought tickets to a show in LA, planning to go with his brother.
I began to feel we had made it to a good place. I was getting hopeful that I may be able to travel someplace overnight, see some friends. September was pretty good. And then September ended.
By late in the month one cg was getting ill and showing up 1 or 2 days a week. Another had his school schedule changed to class sessions that changed almost weekly. A third was unable to come in for 2 weeks. Thankfully one was able to help during the week and I covered the weekends and weeknights. Back to 16 hour days. It was also the month of no therapy while the insurance approval was pending. It’s so hard for us to do it at home because it requires 2 people and I am usually busy making dinner and getting things ready every weeknight. He doesn’t want to do therapy at 8 pm.
In addition, he started having pain again. No patterns. Some days had him in the pain stupor, barely able to talk. Those days a late afternoon nap seemed to help and he would feel better for a few hours before bed. Others would start off badly and end better. Still others, the opposite. By early October he was back to just enduring the days.
My alcohol consumption creeped up as the election caused stress in my husband and I. We talk about what we would like to happen, what we think could and the worst case. That was not helpful. I tried to block out the election barrage but was drawn into the sad debates. I haven’t watched debates for years because they always move away from what is important. I don’t want to watch a he/she did who the fuck cares. I just want each candidate to talk about themselves and specifically what they plan to do. Too much to ask. Regardless, I fell into the trap and paid the price.
Around mid September after searching for awhile I finally found a biofeedback machine that could help strengthen his weaker muscles (triceps) and maybe more. Who know? It’s worth a try right? I guess only in the right places. We asked his physical therapist about it. She said she has no clue about biofeedback. Further research shows NOBODY in Fresno has any certifications or experience using biofeedback. The device requires a prescription, which we plan on asking for at his next Dr. appointment. It also has a $3500 price and we doubt the insurance will find it medically necessary. So we are trying to save. I updated his go fund me page and had a couple followers donate, which was awesome. I don’t know how long it will take but maybe by next year we can try doing some biofeedback.
By Mid October, he was getting excited about his trip to LA with his brother. His brother would be arriving Saturday, would hang out while my husband and I went to a dinner gathering and they would hit the road Sunday morning. Concert Sunday night. Meet up with a friend for lunch on Monday. Home by 9 pm Monday night.
I was worried the long drive followed by a concert would be hard on him. His brother and the cg would need to use the slide board to get him into and out of bed. He was running out of Nucynta, his new medication. We needed to get it filled before he left or he would run out. We got the written script within the window allowed by the insurance. Too soon, they won’t approve. Sadly I got it to the pharmacy by 3:30 on a Thursday. That was not enough time. They would not have it filled before the following Tuesday. He runs out on Saturday. He is not supposed to go off cold turkey. His response when I tell him? “Fuck my Life….”
We have to look at what is left and ration it out so he has maximum pain medication when he’d need it the most. We started rationing on Thursday. Saturday evening he spent hanging with his brother. Sunday they were on the road by 10:30 am. He kept me posted along the way. My husband and I enjoyed a day to ourselves and an evening to get to bed whenever, with the monitor off. He made it home by 9:30 pm on Monday, feeling the effects of the drive, but so happy to have gone. He loved the show ( Bon Iver). He was able to see a childhood friend that he had not seen since he was in the hospital. He loved this adventure and was looking forward to more. It was a great trip.
The Nucynta did not get filled until Wednesday (fuckers) and he took the extra dose prescribed. Bad idea. Hives. At least we are certain now that is what it’s from so we decreased the dosage and are slowly increasing it to prevent them.
He still has good and bad days. He has been back to therapy and we are trying to get a hoyer lift with a scale to monitor his weight. He has dropped some more, maybe another 6 pounds, but it’s hard to tell.
We were feeling better again. Voted early and hoped for the best. Then early November. Our evening cg is pregnant and having a difficult time. We don’t know how long she will last. And then the worst that could happen. Trump was elected. I felt a despair I hadn’t in a long time. Any politician who had done any one of what he had during the election would have been out. The voice of hate and intolerance in this country has been given a powerful amplifier. I am so sorry for the future and hope we can recover from the damage that will be the result of someone who is not prepared.
Colin is angry and worried about what benefits he could lose. I am as well. We can only wait and see. We do that all the time.