Early July, We just returned from a trip to Oregon. Family. The trip was so hard on Colin. From the moment we drove out of the driveway, he cried in pain during most of the 11 hour trek north.  Once there he did not sleep, his pain increased and nothing would help. Hanging out with family was the only respite for him. Once back at the motel he was again in agony, crying or just a dazed stupor. This did not change on the road home, nor for the two days we have been home since. Each day is worse, No medications are helping. We read an article that suggested morphine increases neuropathic pain. He has decreased the oral morphine. He is due to have morphine put in the pump next week. We researched pain medication mixtures for SCI neuropathy. Found one study  that mixes prialt and hydromorphone (dilaudid) that had success. Maybe we can work towards that.

We are having very good success with his catheter positioning. If all goes well, we may not have to take a 16 hour day and head to UCSF.

We also have gotten notified that the extra 160 hours the state supplements for care has been decreased by 40 hours per month. Apparently the combination of hours exceeds what Medical will pay, or something. Whatever they use to calculate, he has “too many hours” and they need to make it “cost neutral”. WTF. So I get to volunteer an additional 40 hours each month. While working full time, covering every night plus days that we don’t get covered. Like tomorrow.

And neutral to what? I look through the paperwork they send. I have no clue what the numbers mean. Are they saying Medical will only pay x amount for him to be in a home and to be at home, they pay y? So y exceeds x , they reduce the hours so x=y? But how do they get to y? The number for the supposed y does make make sense to me. A former math teacher. Now a Chemistry teacher. I understand numbers.  Not theirs.

I called his case worker. For a week I was not able to leave a message. The end of the second week I think I did. I hope. It has been a week. I will wait another. Last time she was here she told us the state (Ca) was reorganizing the DHCS and her division was being       “absorbed”. Mary would not be his caseworker any longer but we would receive ” notice”. We did not. We do not understand the numbers. I cannot contact anyone. I will now have to reduce some cg hours and volunteer 40 per month. That is $400 of medical supplies I need to procure as a volunteer.

We are trying to get the Jeep, the Honda and the Chrysler van ready to sell. We just do not need 6 cars. We can pay off the Subaru then and get a new one that will replace the Jeep and Honda. 4 cars will do.

I started looking into trusts and wills. So much to do. I don’t want to pay a lawyer $2k to do it for me. It’s not that hard, just time consuming, detail oriented. I will probably have to shell out due to lack of time. Even with few assets, no savings or disposable income, it will take several days for me to get through it.

I am not prepared to return to work, I have not be able to study for GRE. I am thinking I will just get whatever is the cheapest easiest Mater’s and be done. I cannot afford the one I started at CSU Richmond (East Bay now) so I need something else. I am supposed to be on vacation but have yet to have more than one afternoon or morning completely free, let alone an entire day.  All I want to do is sit on the porch, drink some wine and try to forget all the stuff I have to do. I have decreased my consumption, which I feel good about. I still over imbibe, sadly. I wish I was better at saying “that’s enough” but all I think is “it’s never enough” to take away the dread, the sadness, the despair. Only a black out does that, which brings it’s own unwanted consequences. There is no in between.

Early July, A gives notice. He has found other employment. FUCK!!

M returns for A’s shift, tenuously, as always. We hope M can remain for a long term. Her circumstances are not promising. What can we do.

I need to make more money, which means I need to go back to school. In my spare time. With all the extra money. None of which exists.

FUCK!!

He is now off oral morphine. He is taking Nucynta.  It is new. It has not been effective at the dosage yet. He has Morphine in his intrathecal pump. It also has not been effective at the dosage. Pain management is still evolving.

Catheter leakage is currently managed, for the moment. One small change and it’s no longer managed. We have a specific position at night and I put 5 ml more into his catheter balloon so he has not leaked during the day. At least not enough to prevent him from socializing.

He turns 27 on the 30th of July. 4 years since his accident soon. I still struggle with the reality. I always worry about his future. I believe I am not prepared for any unforeseen circumstance that prevents me from providing and keeping stability. I need 10 years to get things in order.  There is no guarantee.

This July 30th was not a good one. He was in pain all day. His brother and cousin were here. They were a mild distraction. A wildfire broke out a few ridges away. Too close. We did our evacuation drill, loading cars with non replaceable items, computers. Packed a few days of supplies for Colin. Made plans to transport animals if needed. He was miserable while we all prepared. We watched trees exploding in the dark, packed some more and waited. He did not have a good birthday. The fire moved away from us, thankfully, but made us re evaluate how to manage the land for fire prevention and evacuation. I had to add all his durable medical equipment to the fire insurance.

August did not begin any better than July ended. Hot, bad air, pain and more pain. His evening cg was having health issues and not showing up so it was me again. He wasn’t sleeping, nor was I. It was depressing. I had to return to work. That was more depressing.

Mid August, a change for the better. His chair repairs were finally completed. He was approved for more therapy and was going. His weight dropped by almost 20 pounds and a small increase in the nucynta seemed to be helping his pain. He was sleeping through the night, his catheter wasn’t leaking and he was doing therapy at home again. It lasted about 2 weeks.

Then at the end of August, out of nowhere…hives. His entire bottom, thighs, scrotum and lower back, Dreadful hives. Hot to the touch, painful to sit on. Blisters and welts. He spent an entire weekend in bed while I turned him from side to side, kept him cool and comfortable. It took over a week for it to improve and we still aren’t sure what caused it.

The new medication that is helping? The dosage increase was the only thing different. We’ll have to figure it out so it doesn’t happen again. They hives are still not completely gone and can flare up again with heat or friction. We have to be careful.

I am fighting serious depression. The hours the state cut were supposed to begin in September, but the time sheets for August reflect the change. I did not plan for that.

I still cannot plan anything for myself. Trips with my husband, doctor appointments, therapy. The WOW expansion came out and while my husband was leveling, I was tending to Colin’s hives. Not that it matters as I cannot seriously play, but it is something I can enjoy for a little while. The scheduled cg had gone home and took 2 days off. Something always happens with the scheduled cg and I end up doing the care. That has been one thing we have been able to count on, sadly.

I took on additional work to make up for the lost hours so I can buy his medical supplies. I get up at 5:30 every day. Leave by 6:30. Home by 4. Cook, pack a lunch, prepare the coffee maker, water the garden, get my clothes ready, get Colin’s meds ready. If J is here, a few nights I can get to bed by 9:30. If she’s not here, it”s 10:30. I don’t sleep very well now that I have cut down on drinking.

When I drink, I sleep with no real dreams. When I don’t, I have horrible nightmares. Always a scenario where I cannot save Colin.

One has us driving on the jeep. At first I am alone, and I plow into some mud. As I do, the jeep begins to sink in quicksand, p to my shoulders in an instant. I glance to the passenger seat. There he is, in his chair. Sinking in the mud. All I can do, is cry to him, “I am sorry” as we dip beneath the surface.

Another has me running around on a tin structure at a high altitude. The structure is like corrugated aluminum, weak and full of damaged areas with holes. I am trying to get off, then turn and Colin is in these platforms in his chair. I yell for him to get off and he moves but get stuck in a weak area. He and his chair fall through, to the depths below.

When I don’t drink, I don’t sleep well. When I drink, it’s bad for me in many other ways but I can shed the despair and anxiety. I stop thinking about everything I need to do and how little time I have to do it. I don’t feel the weight. I don’t feel the sadness. I get a little break from it all.

Nearly 4 years and we are still in transition.