I don’t know how to begin. It doesn’t seem to matter how long we have dealt with post trauma problems, it will never end. I am sitting with him after working all day. He is reclined in his chair and sleeping. His pain sends him into a mumbling lethargy every afternoon until his body forces him into slumber as a temporary respite. Once he awakens, he’ll get about 90 minutes of tolerable levels before he descends back. He doesn’t see his friends. He doesn’t go out. He doesn’t do therapy like he used to. He stopped reading and writing. He just endures each day. There has not been many good ones. I search for options, make calls, ask questions. No answers, Alternatives like acupuncture and hypnosis require money, time and travel. We have none of those to spare.

There has been no improvement in pain management. There has been no alternatives available. We have taken him off the Carbamazepine and Neurontin completely. He is down to 250 mg Lyrica and 60 mg baclofen. The pump we had put in a year ago has not given any pain relief. The baclofen bathing his spinal cord has relieved the muscle spams in his legs, but not his hands. Also in the pump is Prialt We are hoping it will help eventually. The dosage can only be increased by 0.5 microgram each month. He is up to 2 micrograms. The average for relief is 7. He does not believe it will ever help him.

Even though we have chronic stress everyday, for the most part we are patient and understanding of the doctors and office staff we deal with. We pay our co pays, we schedule times that we can make easily so no one is put out and have an on time arrival rate of a good 95%. We go with the flow. Until the flow fucks with us. Which it did. With his urologist, Dr. R and his staff. Fuck them.

He has had the leaking catheter for several months now. We went to see the Dr. twice about how it was clogging, leaking and we could not flush it as instructed. I was also starting to change it every two weeks instead of each month. every morning he wakes up soaking wet. It is costing us in beds pads, in disposable briefs, in wipes, drain sponges and laundry. We only got to see the practitioner. Second time they ordered a CT scan, We provide the transfer onto the scanner. Go back 2 weeks later, he has a couple of bladder stones that need to be surgically removed. Plan to schedule as an out patient but the anesthesiologist (as usual the fucking cry babies) won’t do it as an outpatient. He has to be admitted into the hospital. The only time he is given is 6:30 am, the only time the Dr. does the procedure is in the morning. Even if everything went right, put him to be dressed, no BMP, no shower, put him in the van at 5:00 am we would still need to drive an hour, find disabled parking, get him out, find the location in a hospital we’ve never been to and register. We would not make it. Colin calls the office and lets them know we can’t really make that time. Whatever the conversation was, he felt that he communicated the times were too hard for us and he was going to seek another Urologist’s opinion and schedule. He made an appointment with his primary Dr. to get a referral. We never got a call from a Urologist. We find out there are only 2 groups in Fresno. The other group is the one that has=d us waiting while he was still in a manual chair, with a trach, for an hour before turning us away due to his Medical secondary. So I called Dr. R’s office to schedule the 6:30 appointment and figure out a way to make it happen.

Well, apparently when you seek a second opinion, even if you never get the chance, you have effectively discharged yourself from the Dr. R’s service. She told me Colin had discharged himself and asked how he could have done that? She insisted she was clear in telling him that is what he was doing, yet he was unaware. We went back to his GP who said call them back. we did. Since we can never actually speak to the Dr or the supervisor (who was talking to her in the room) it was all her version, which did not match ours. The supervisor was saying we should go to another city. We continued to insist we did not know he was discharging himself with the only real support being us calling back to reschedule. They had no fucks to give.  Doesn’t matter there was nothing in writing. Doesn’t matter we did not understand the policy. He now has no Urologist.

Since this started he has had 2 AD episodes and is now out of catheters. More are expected to arrive within the next 10 days but if he has another clogged catheter that prevents his bladder from draining we must go to the ER. We have no idea how we are going to get the bladder stones removed, nor how much more it is going to adversely affect us.

We are so very tired of the patient mills. Our medical industry is a nightmare. It has been more fucking traumatic that his accident! We dread going to these Dr.s but have no choice. We never did like Dr. R. He sat in the exam room telling us how his time was more important that ours. Made fun of Colin for “being one of those” when  he heard how Colin had his accident by changing the music in the car. He was not a nice man. But we treated him respectfully and followed his instructions for Colin’s care. We didn’t want to have him as a friend. It would have been nice if he and his staff were more understanding, supportive and just plain respectful. This is yet another bad experience I want to put behind us. I just don’t know how to move forward and get his needs met.

With spring almost here, he’ll be able to go outside more. I am hoping to get him exercising his arms more often and getting his legs moving regularly. It’s hard when I work all the time. We have him doing therapy 3 times per week and playing games on his iPad. If we get the pain under control, we can do so much more.

The sadness of his situation is now like a lead cape on my shoulders. I cannot help him any more than brief comfort, nor change what his life is. I still worry everyday about getting my house in order. I want to have things set up so if I die or get sick or injured, Colin is protected and all they have to do is sign a paper. It will be so much work even though I don’t have anything. I’ll get started this soon.

Edit March 2016- Dr. R took charge. His staff must have overstepped. He scheduled an appointment, saw Colin, made the staff member who told him he was discharged reschedule the procedure. We are on for March 28th at 7:45. Something good finally happened.