Three Weeks Later…

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The past three weeks has been filled with trying to get my kids to pass and finish their respective grades, having them prepare for summer school, dealing with the first week of that, ushering in the purchase of new beds, and trying to facilitate the angst though the purchase of all new appliances.

My husband does not like change. He will put off purchasing anything until he absolutely must. The beds, for example.  Our fridge door is being held on with scotch tape. Dishwasher is broken. This must happen. I have no involvement with the kitchen, so it doesn’t bother me. He has things chosen, it now is having things picked up and hooked up, which is a huge chore. He can’t take all this time off and look after me.

The new beds, however,  are fantastic. My neck hurts less. Actually, I hurt more, but it’s not the bed’s fault!

Once again, with a whole new crop of doctors, we have to play around again. When I first started at the pain clinic 11 years ago, they put me on an opioid. That was standard practice. I am still on a bit of that opioid, and I’ve been trying to get off it for three or four years now. My pain doctor would say next appointment. Then that appointment would be in six months because that was first available, there would be 10 pressing matters to discuss,  then it would be… next time.

In the meantime I go on marijuana oil and a marijuana derived pain supplement. Fine. Everything is good. I’m okay as long as I don’t move too much.

My migraine doctor sends me back to my pain doctor saying take me off the opioid. At the same time, the marijuana pain pill is going out of stock. These two make up 62% of my pain relief. My marijuana oil only lasts for 5 hours at a time.

Now, my husband manages my medication.  He takes it and puts it in the weekly boxes for me, so I don’t know how much I stepped down, but before long I was in agony.

Now, those without Ehlers-Danlos Syndrome, and even those with, because everyone is different, right? The way mine works is that if my spine goes out-of-place, all of my muscles immediately tense up so nothing else gets ‘damaged’ until we get help. My stupid, well-meaning body. With my pelvis doing whatever nonsense it’s up to, my whole pelvis muscles tensed up, including my back. We have been trying to medicate them down ever since. Yesterday, we or actually, he gave me a booster: which is a smaller dose of medication set aside for emergencies allowed by the doctor. After that, I was able to sleep from around noon, to my regular time this morning. Previously I had been sleeping in two to four-hour chunks. I feel its much easier to cope. Like I’m able to.

I’m so frustrated with these doctors, though. What were they expecting? I was just supposed to stop everything? That I am actually not in pain and am doing this for fun? Honestly, the way people have been treating me. I might just break.  I don’t want to be on opioids. I don’t want my kids to hear me screaming in pain, either.

My migraine shots are coming up. I’m hoping that will help the face pain. I was talking with the other doctor about the pubic bone pain and he asked if my migraine doctor would be willing to shoot me with botox in the pubic bone.  So that’s a fun conversation I get to have. Although, last time I did compliment her on how smooth her legs were and asked if she waxed or shaved. ☺ I think I was completely giddy with pain relief.

Why do people think they already know what I think? Nobody ever asks what I want.

Someday someone is going to treat me like a person. Scratch that. My Migraine doctor is great. The office staff looks after me very well. It’s mostly the doctors who don’t know what they are doing and people who are rude in general. But those people still don’t see me as a human being.

The way things are as of now, I am completely off the marijuana based pain pill, as it’s out of stock at the moment and I have no choice. I cut down a bit on the opioid, but I need to stay where I am because I am hurting at an 8 or 9. I  am waiting to see the doctor who is supposed to be seeing me for this. I had an appointment last week, but was too sick. Imagine. Still taking the marijuana oil. It’s helping me through. I do have other medications, but those are the main ones for pain.

The physiotherapist is ready for me. My last two physical therapy experiences were:

1. Lose the cane and join a gym. For this, $125

2. A guy who couldn’t figure out why my legs were so unresponsive. Duh, I was full of Botox. I can’t be smarter than these people. I can’t.

Looking forward to this. 🙄

I will let you know if anything changes. First I want to walk without blacking out. Then physio.

🦓

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