Spring is here. A real spring too. Weather has been cool and rainy. Super blooms of flowers, green everywhere, snow in the Sierra and water flowing in long dry streams. If only everything could recover so well.

We have not replaced the weekend caregiver. Nobody responds to the ad. M finally left us for a job elsewhere and we have filled her void so I can work. We are managing to keep me working and even a few weeknights off. I can handle the weekends for now.

We finally got his new shower chair and it is awesome! Padded seat, easy to move, comfortable. He can stay in longer and enjoys his showers much more. We got his Nucynta approved for a year. We found some underpants with an extra pad for absorbance and no center seam. These have helped his hypersensitive crotch area to settle down. His nerve pain has been manageable. His muscles are now a problem.

In mid March his legs, feet, sides and abdomen began tensing up. All the muscles would spasm all day. His legs would not bend but remained in rigid extension. The pain was from muscle fatigue and tightness. We called the PAC for his Baclofen pump as it all started right after his pump was refilled. He was told he must have a UTI and go to the ER. The usual CYA response from all doctors. We are not stupid enough to heed that advice, so we ignored it and called his Primary. She prescribed antibiotics for a UTI.  We completed the script but the symptoms were still there.

Call the pain management doctor again and again. We are told there is no problem with his pump and he needs to go to the ER. We again ignore this asinine advice. We do some research and decide to decrease his Nucynta. Maybe we started him back on too fast. He didn’t get hives this time so we went full on in a few days. We decreased it over the next week but the symptoms persisted.

This is not simple muscle spams. These are rock hard rigid spasms that prevent him from therapy, range of motion and general comfort. There were days he couldn’t even get out of bed because sitting in his chair was too painful. We couldn’t just ignore this. It was preventing him from doing things he wants to do.

He did more research and learned the baclofen on his spinal cord causes his body to become desensitized much faster than oral delivery. Would have been nice if they had told us this was a side effect. He is already at maximum oral Baclofen levels so all we can do is try to increase the Baclofen in the pump. The next plan of action. When he has his appointment, as usual, the PAC doesn’t listen. Colin tries to explain everything we have done INSTEAD of going to the ER. No reception from the medical professional. Colin was cutoff, discarded.  The PAC agreed to increase his Baclofen as he disregarded any information Colin offered. Next step is his GP and any recommendation. We fear what that will require of us.

We did have a nice trip to Berkeley in early April. We found this awesome studio/1Bath AirBnB close by the campus. The show was awesome. I did have to throw a huge tantrum after they fucked around and would not let my husband and I sit with Colin in the disabled section. The section he was in had many non disabled folks sitting there, I suspect stage workers or such. They told us he could only have 1 person with him. Like they allow non disabled people to come with only 1 person? WTF Greek!?

Regardless, a couple glasses of wine, a huge screaming fit and we got our seats.

The next day we went to Jack London Square Farmer’s market, Plank for Beers , took the Ferry to the Ferry building and fucked around for a bit. Got 2 Zachary’s, some beer and wine then relaxed. A nice weekend, great weather, great place to stay.

Caring for him on a non hospital bed took it’s toll on me. I injured my thumbs pulling on him and losing my grip. I hurt my hips and shoulders  using the slide board on a non sliding mattress. I hurt my back working on a bed at knee level. It took about 2 weeks for my back to improve but, my hips and thumbs I use too often caring for him so they never really recover.

We also got a great surprise as a tax refund. For 4 years we have paid a shit ton of taxes. My awesome sister, out tax preparer, found out my income from caring for him is not taxable. So we got a refund. We can also go back and file amended returns for the past years. I was so prepared to pay a few thousand again. This will help us a great deal. I still need to work summer school. The refund isn’t that much, but any little bit we can save brings me closer to getting his special needs trust done.

I hope I can save enough to get the biofeedback machine from Israel if the prescription is still good.

The June family reunion was cancelled. My Aunt is not up for a huge turn out, understandably. She and my Uncle had been married for so long I cannot imagine how difficult it must be for her. Hopefully we can all see each other soon.

Once again we are working on his weight. Edibles have helped him immensely. They have helped decrease how much prescription sleeping meds he takes. He sleeps well through the night and the CBD rub helps with the tightness in his legs. Sadly, edibles are baked goods and candy. My solution is to buy his own hash and make super concentrated edibles so he can eat a small little brownie or cookie or piece of chocolate instead of a huge one. We’ll see how it works out.

Very soon the weather will turn scorching hot, all the green will become fire fuel and we will hide in the shaded screen patio instead of basking in sunshine around the grill. But for now, this moment, we can enjoy the spring. Tomorrow the temperature will bring an early summer.

I find myself watching, observing and remembering Colin’s daily life. It fucking kills me. I have no solutions to ease his pain. Doctors have no answers so we are responsible to figure out what the fuck is going on.

And now Trumpcare is half way to law. Paralysis is a pre existing condition. Diabetes is another. Being Female, Cancer in Remission, Rape, …well fuck just life seems to be a pre existing condition. So Replublicare is WTF? Things are going to get harder. We need a plan.

The barriers to his improvement are his pain, mobility and weight. We can control his weight and work on mobility. Mobility improvement means everyday a minimum 30 minutes of exercise. 60 minutes better. Which requires a person of means and training be present during his optimal times. A trainer who can tell him “Yeah you feel like shit but so what? Go do some Ric-shaw”, “Let’s set you up for the hand or leg cycle”. “We can stimulate your muscles for the next 90 minutes.” And so on, for all the opportunities we are set up to provide. But I am not able to work and care for him and set up a care network. How can I? When? Fuck….

I read the Noam Chomsky quote about the passivity go the population allowing the powerful to fuck the poor, elderly, disabled, non white male, populations. It does not look good for Colin’s future benefits. Nor mine.

I have read reports that shit is going to suck by the turn of the next century. Thankfully, I will be long dead (nobody live 140 years). Sadly, Colin will be around for the decline. I imagine his demographic population will be hard hit, if it even survives the next few years. If we don’t have Medical, or IHSS or WPCS services (all funded by the federal social services budget) there is no way to care for him at home. He is forced into a state run home where they send the disabled, sick and old to die. Fuck that shit. I need to win the lottery ( I don’t play) or find some way to generate huge sums of revenue and get him taken care of.  Well fuck, likely Not!

I can’t even manage to keep my house totally clean. I shower and look at the goddamn mildew I need to wipe down with bleach, the rugs that need washing, the floors need scrubbing, carpets needs cleaning, ceilings, fans, cabinets, refrigerators, windows, etc. My cleaning list only gets longer. I barely manage to do laundry, clean the kitchen, cook, keep Colin’s room semi clean and… that seems like all I can manage. Maybe empty the trash once a week. I want to do more. But what I plan seldom comes to fruition.

I have learned to not stress. Eventually, things get done. Not in the time frame I would like, or expect or can even fucking handle, but…. it does happen eventually. So my entire perception of time, expectations and planning is different. As long as it’s on the list, and the list does not extent past 2050 ( when I turn 90) we can get shit done. As long as I am healthy and strong ( in my later years?… fuck) we can do this. We don’t really have a choice.

Fuck anyone who believes Ayn Rand’s ideas. Her book left me convinced the Trump administration and those who follow her ideas are NOT John Galt.  They are destructive, dependent, inexperienced, ignorant and ineffective. They are all those who drove the producers away.

Elderly, ill, disabled are not takers. They are unfortunate victims of life. I have no problem giving up some of what I make to help those in need. I will write a check ( small one, but hey… I will) to help. Today at Costco some strong young man helped load some boxes on the car, unsolicited. I gladly gave him some cash for his efforts. Money if for exchange of services, not hoarding and having more than any human could possibly need. I have digressed to topics beyond Colin, his condition and efforts to adapt. My bad.

Colin has been so amazing. He endures more pain, discomfort, limitations and frustrations than anyone I have never known.  No support from the doctors and he managed. He woke up with more hives, handles it like a champ. Tears running down his cheeks, the despair so obvious, he tries to shrug to say “it’s all good”. I tell him it is not good. It is shitty and hard and I am so very proud of how he handles the daily challenges. This makes me work even harder to secure a future so he can live free of despair, pain, frustration, disappointment regarding his condition. We have a great deal of work to do.