March began much like February.  The night before his Stanford appointment went rather smooth. I only had to get up once before our 6 am start time.

We managed to get his morning routine finished, him fed and ready to leave by 9:45. The trip there was uneventful. We pulled over in Los Banos to get him a pressure relief and arrived in Redwood City 30 minutes early. We needed those 30 minutes. Once we arrived I realized I had forgotten his morphine for pain. Driving makes him hurt badly. Epic fail.

Naturally, we could not find disabled parking at the entrance. All Van spaces were taken by cars. We parked around the back then proceeded to find our way through the rain and impressive buildings that made up Stanford Outpatient Clinics looking for building B, or some alphabet number, headed for the Pain Management Center.  We found the back of the building and were looking for an entrance. Some employees were next to a very picturesque window, one playing a grand piano placed close to the view. Neither offered to help us find our way. Every employee except the valet and receptionist pretty much ignored our efforts to find a way in. Seemed pretty standard procedure for the medical industry.

His chair was rapidly losing charge (30% in 20 minutes). I was going to have to push it manually by the time we were done. The batteries were not scheduled to be changed until Thursday.

Arrived right on time at 2:45. We spent the next 45 minutes filling out MORE paperwork and a survey that was about 500 questions. 85% of the questions did not apply to someone who was immobile. No do not apply option. We lied ALOT. So far we were unimpressed at Stanford.

Eventually, after the torture of the questionnaire, we were brought back to a exam room. The nurse asked us to answer the very questions I had spent fucking forever writing down on the mandated paperwork. I guess medical folks don;t like to read. She started a very boring video about the center then left. We waited some more. And then more. An intern did not come in until 4:45. She hit his knee with the reflex hammer, asked some questions. Then disappeared for about 20 minutes. Finally a doctor came in. Told us he read the notes from his neurologist (not any of the questions we answered though) and they had some recommendations for her (not Colin, just the doctor). They wanted to redo his drugs, give him new ones. They gave options of pumps that are inserted into his spinal cord and bathe it with drugs. They offered more drugs and invasive procedures. Exactly what we did not want.

They seemed uninterested in anything else except pain and pain drugs. I asked about alternatives that were pharmeceutical and invasive free. They had none. STANFORD had nothing to offer us. The visit was a waste of time. He was not examined, they only looked at notes and every single thing they mentioned could have been provided to his neurologist over the phone. Another money making trip for doctors. No one else benefits.

The system is beyond broken.

By now, it is over 30 minutes after 5 pm on a Monday. The 101 is at a standstill as are all ramps entering the freeway. Surface streets are packed. We were hungry as neither of us had eaten since morning. We gave ourselves a mission to find some kick ass Indian food and go eat.

By 6:45 we had been successful. We drove to Palo Alto, the old town section. Found some parking. I pushed him through the rain. We made it to a small Indian place and had a great dinner. We relaxed, complained about the lost time and lack of information. We took our time. Once we left, the freeway was clear and it took us 5 minutes to get on the southbound 101.

The drive home was hard on us both. The rain, an accident just south of Mountain View and rain until just north of Madera.We stopped in Los Banos again for a pressure. He was cold even in a blanket. I held an umbrella over him to keep him dry but ti did not stop the wind. We finally made it home at midnight, my husband waiting for us. I got him in bed, medicated and comfortable. He was asleep before I finished. Thankfully we both slept till 7 am. Going to work the next day was tough.

The remainder of the month was much the same as February. Pain, sleeplessness, increased spasms. His father visited early in the month and Colin spent much of the time in his pain coma. He developed a large sore on his scrotum from the stander so he was not able to use it for the last 2 weeks of the month. His batteries were changed, not without the usual medical/insurance bullshit. He went without several prescriptions twice because of our efficient pharmacy system.  He did get a nice trip to LA to see his brother and attend the Appleseed Cast concert. He was also able to see Tool in Fresno. Not every moment was bad, but the good ones were physically hard on him.

He saw his neurologist mid month. She prescribed a new pain medication that worked sporadically. We never know from one day to the next. He has mostly bad days and he knows in the morning whether he will be in too much pain to stay alert. We had 3 good days in March.  In addition, we now have bowel issues again. He wants a good BM daily and gets upset when it does not happen. Stress, pain and spasms make it so he is bloated and uncomfortable. We have tried more things than I knew existed. Fiber capsules, laxatives, stool softener, castor oil, enemas. Some help, others do not. It is a crap shoot.

He is now on 8 prescriptions and twice as many supplements. He downs cups full of pills 6 times a day. The prescription pills are not working, he does not want a pump attached to his spinal cord. We can try acupuncture but where to find one who can treat a quadriplegic?

Regardless of his pain he does therapy regularly. If he cannot do the stander, he gets on the mat table. He can balance with no hands, move his hands from behind him, bearing his weight, to his lap, without support.  His ability to hold himself in a sitting position using balance and breathing is lasting longer. He works hard even when he is in pain. I am so very proud of him.

Myself, I still exist from day to day. Good days I only get up once or twice at night. Bad ones, it is five or six times. His pain wakes him, he cannot sleep. There are no more doses of pain nor sleep meds left.  I listen to him on the monitor and wish I had some solutions. I have researched and read what people send me. I still cannot bring him comfort for just a single day and night. I see his despair. I watch him sleep during his pain coma telling him he is not alone in spirit. But we both know he is alone in his pain. Alone in his sensations.

Recovery is so very slow. What used to be 24 hours is now 6 months. Nothing happens quickly. March is over yet it seems nothing has changed except the season.