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affected

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every small mercy is worth celebrating! glad you have some good news :)
 

Jrzygrl

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OMG. Again?

I was sitting with DH in the sunroom yesterday and heard something drop on the floor. What was that? Checked the back of his chair and there it was, bolt on the floor and an arm off the back. Took a quick picture and sent it to the tech who came out last week. Then I was able to get it reconnected again, but this is a repeat of one of the previous problems with the back.

Spoke with the tech this morning. Described the problem and how I fixed it, but that I need a permanent solution. He's coming back out on Monday. He offered me a job.
 

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Narrowminded

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I think you should take that job. Many patients would be very thankful for a competent tech. :)

Hugs
 

affected

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make sure you charge a huge hourly rate to em - unbelievable isn't it?
 

Jrzygrl

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Got DH up, stretched, to the bathroom, showered, dressed, teeth brushed and fed. That took almost the entire morning. Cleaned up the bathroom, kitchen and did 3 loads of laundry. Answered numerous "I need", "I want", etc. calls.

So far, I've been called mean and stupid. Oh happy day!
 

affected

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I found having somewhere to vent really helped me walk back into the situation with a smile and ready to go again. If you can let off steam here, that's a great thing - we get it 💜
 

Jrzygrl

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Thank you. Things got a little better later in the day.

He's not up yet, so I'm having my coffee on the patio. I have one of the Alexas out here so I can hear him when he calls.

All 3 kids are coming home to have a birthday dinner for him, since his birthday is Monday. Hoping for a good rest of the weekend.

Hugs all around!
 

Narrowminded

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Hang in there Jrzygrl. Those days are the worst. And I agree with Tillie, if you can come here and vent, all the better. It does help that others know exactly what you are going through.

Major Hugs
 

Jrzygrl

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Weekend was pretty good, save some emotional bumps. It was nice to have all the kids home.

Now this week has been, excuse my language, a shit-storm.

Monday we found out his PWC needs a new part for the actuator. Estimate for receiving the part is at least a week.

Also noticed that his Lorazepam was almost out. Called the clinic's prescription refill line (bounced to voice mail of course) to request they send a new one to our mail order pharmacy. I keep looking online to see when it is in the processing queue. Nothing, so I called and left another message on Wednesday. By late Wednesday, he's out of Lorazepam (my bad that I did not notice sooner how low it was running, but I set the pills out for the week, so I forgot). Not good. And of course, it's a holiday. 3 panic attacks and 2 pretty much sleepless nights later and today, I find out the "prescription line" snail-mailed me a paper prescription, which I then have to snail-mail back to our mail order pharmacy (controlled substance rule), then it can be up to a week to process! Had they let me know, there is a way around it where the script can be filed electronically. Got a hold of the doctor's office this morning to get a "gap" script. DS picked it up and DH has had his morning dose. It still does not solve the (recurring - we had this issue before) problem, so I emailed his neurologist directly in the hopes that she can tell me who "prescription refill voice" is so that I can get things back in motion.

And to top it off, DH is having trouble with his jaw - can only open it a little bit, maybe an inch between his top and bottom teeth. Meals are now at a snail's pace.

Right now, I am running on caffeine and will power. Time for another cup.
 

affected

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crap and double crap @Jrzygrl
If that gap script gave you an extra one, maybe you can get the next script filled now, and get a routine where you start ordering a bottle when you open a new bottle, that way you have plenty of f*^k around time?

It's just too cruel for them to be left without meds because the system is so slow! (everyone makes the mistake of getting close to running out so systems should handle this without snail mail)
 

Jrzygrl

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Unfortunately, Tillie, the "gap" script is only for 4 days worth. So I need to figure out a solution. I'll call the mail order pharmacy today, but I imagine I'll be back on the phone again Monday AM to get another emergency script to he picked up locally. The pharmacy has it set up so that you can't really order too far ahead. And since this one (and one other) is a controlled substance, the rules are even stricter.

DH is still sleeping now, so I'm trying to grab a little peace and quiet on our back patio.

Hugs all around!
 

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Jrzygrl - see if you can have your neuro order say 2mg instead of 1mg so that when you get the pills you can split them and use just 1mg. Then you reorder at the regular time, but you actually get twice the dose. I used to split pills all the time for DH. Maybe suggest the amount you are giving isn’t working well and possibly needs upped. If your in the snail mail race anyway, might as well get the higher dose. Or can you get it from a regular pharm instead of mail-order?

I’m so sorry this has happened. Know I’m sending huge hugs.
 

Narrowminded

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Oh, and as too the mouth, that happened to Brian too, however he already had a feeding tube, so we were able to switch. He actually has lost his swallowing before the mouth got real tight. Are you planning on a feeding tube? If so, I’d get that going ASAP.
 

affected

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it is really hard when they are what term here schedule 8 meds - they need to have controls for sure. I know that as we suddenly came up to Easter, and things were suddenly in overdrive I had to get scripts filled in a rush and it was not fun!
I hope you can find a way to at least get the scripts filled quickly so you don't have to be left without as that is just wrong.
Isn't it amazing the amount of hoops we find ourselves jumping through!
 

Jrzygrl

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I called the mail order pharmacy again yesterday, and at least the rep I talked to had an idea. I can take the paper script to a local drug store and they will fill it. She said they would probably not do the whole 90 days, but maybe 30. Then I'd have to go back to his dr and get a new script for the rest. At least that would give me some breathing room to straighten things out. Sheesh, like dealing with this horrendous illness is not enough.

Sue, as far as his mouth, he has, from the beginning, said no feeding tube. So we'll just continue as-is and hope for the best.

Hugs all around!
 
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