These first couple of months have been the usual non stop management of our life. New Years day was the same as any other for us. We were in bed by 10:30 and I was up by 7 am. Nothing to look forward to. No improvements. No help. Just Colin and I.
By Mid January we had his catheter issues under control again but now his genitals were in hypersensitive mode. Nothing could touch them. His briefs were excruciating. I was constantly reassuring him that everything was pulled away from his crotch and nothing was touching that area. We changed from disposable briefs to boxers with a protection guard for leaks. By the end of February, his scrotum had settled down. I believe men have been poorly designed.
Doctors and medications are still the usual cluster fuck. In November the insurance told us they were discontinuing the Nucynta 50 mg. Then we get a notice the 100 mg will also be discontinued. I call and ask for a prior authorization form to be faxed over to his Dr. They don’t do faxes. They say to have the Dr. go online and fill out the form. Dr. will not do that. I find the form, print it out, fill out what I can then mail it to Dr. office. Come time for his prescription to be filled ( 2 weeks later) the insurance has nothing from Dr. Try to call Dr. office, get the exchange. 6 times. Then 8 times. Then fuck it. Make an appointment to manually deliver said document, beg Dr, to submit ASAP so we can fill his prescription and wait. This is one Dr. and one prescription. He has too many doctors and too many prescriptions. It’s always something. Its always exhausting.
It has also been like 8 months since we asked for a new shower chair. His old one has no brakes and only 1 strap. No word yet. Just waiting.
His pain is still unmanaged. We are struggling so much with prescriptions we finally got his Medical Marijuana card. The goal is get rid of all the prescriptions and just go with weed for his needs. We tried a high CBD rub on his hip and he noticed the difference. We are hoping to get him some edibles to help put him to sleep and decrease the sleeping meds. The pain medications are such a nightmare, from morphine which messed up his system, to Nucynta the insurance doesn’t want to cover we are ready to throw in the towel and give up on big pharmaceuticals. The insurance has broken us. We head in to a dispensary this week.
February did bring my first weekend out of town in 4.5 years. We went to SF visiting friends. It was just one night and rather strange to not be mentally ready for a summons at any moment. As much fun and relaxation as I had, Colin had to endure a grumpy CG who has reached her end. She was not respectful of his wishes. She was not patient nor communicative. His weekend was not fun or relaxing. It was stressful and frustrating. I will need to plan better if I want to go again.
I also was able to have a Saturday evening with friends in town. I would love to say I had a great time. I however, do not recall. I had 1.5 vodka drinks and do not remember the evening. I know I was tired from taking care of Colin all day. I know it was a safe environment. I know I will not have a vodka drink like that again.
We made another step towards voice control of his TV commands. He purchased the Amazon Fire TV. Now we have to turn it into some type of media server with Kodi and connect it to the Echo. It will take some time. I’m no coder but I have a mission. No doubt 2 days after I get it working (following months of failure) Amazon will release some app that does the same thing. I’m sick of waiting.
We are plugging along in 2017 and have lots of plans ahead. Berkeley in April to see Sigur Ros. A family reunion in Chester, Ca in June. The Eclipse in August. And I have to work summer school to get some repairs done on the house. Carpets, cabinets, paint, bathrooms. All 26 years years old with a history of children and pets.
We need to replace the weekend caregiver. She only wants to work during the week now. I am working weekends again, for the foreseeable future. The thought makes me tired. Just when I need to get outside and get the gardens going. Yesterday it snowed because I was planning on hanging laundry outside and getting the garden pots ready. The weather said “Not today.” Now every weekend is saying the same thing.
I am always so tired. My body feels old and worn out. My joints ache everyday. I have not been to the Dr. for myself in 4 years. I need a mammogram, a pap, a colonoscopy, a physical. In my spare time. The goal is to get these done this year. Along with everything else and the unexpected. So maybe I can expect about 30% success. But what 30%?