[deann-r]

Thanks for checking in. Have you been able to avoid the bugs going around? I just had that dreadful 24 hr thing that’s making the rounds. Hit me out of nowhere but thankfully short lived. Now I should be good for a while right?

[deann-r]

Ugh, I’m dodging illnesses left and right and I’m not even in school anymore. I’m pretty sure I was sick practically every year back then. There weren’t as many options available for learning at home though. During a math test one time the teacher made me go to the nurses office because my cough was too disruptive. I went from the nurse to the doctor to the hospital with pneumonia. Oh the memories. I don’t recall how I did on the math test.

Was it tough going back to school once you’d been home? How did the other students perceive it, or didn’t you notice?

[deann-r]

Heck no! Definitely not enough space. Sounds great in theory.

[deann-r]

Sidenote, I’m about ready to go door to door with a flyer but it’s -4F out right now so that option is off the table. Brrrr!

[deann-r]

I wonder if something like this transfer board under your couch cushions would help give some support. The reviews are horrible but you wouldn’t be using it for the intended purpose. Probably cheaper solutions available but this is what popped into my head.

[deann-r]

Oh yes, the ongoing comfort battle is very familiar. Whenever there’s a change whether it be a caregiver or piece of equipment I wonder if I’ll ever be comfortable again. Over time it works out. I constantly strive finding Goldilocks products though. Like you, I found a comfy position that I sleep in every night. I need to change my topper yearly because it gets that perma-dip and makes dressing a challenge. What type of mattress do you use for sleeping?

You and I are kind of on opposite spectrums when it comes to what we find comfortable. I prefer sitting, and I prefer soft. It did make me think of something I tried that didn’t work for me because it was too rigid. I found it in the camping section and thought we could use it while traveling. We actually left it behind because at wasn’t conforming enough and a hassle to drag with. A cot mat. It’s a slim size but thicker than a yoga mat. You might have the same issue if your couch has the perma-dip though. Unless you could attach it to something like a board. If you do look into something like that I’m thinking you’d prefer gel over memory foam. It’s cooler and not as soft. I of course hate it.

[deann-r]

I’m not a resolution maker either. Some years I pick a theme to work on. For example the week between Christmas and New Year was especially trying with a lapse in communication between me and my providers. So, I think my theme this year needs to be “Just go with it.” I’m not throwing in the towel, I’m just tired of fighting tooth and nail for every little thing and having to babysit the progress. I’ll do my part, but beyond that it’s out of my hands.

What does rest look for you? Over the years I’ve gotten better at it, but it’s still a struggle.

Best wishes for a happy healthy 2024!

[deann-r]

Do you have a favorite online shop? Probably 90% of my shopping is done online these days. It can be challenging as you mentioned. Sizing can be tricky, but when you get to know a brand it’s a bit easier. I’ve been disappointed lately in quality of things and usually it’s a pain to return. I bought some outdoor Christmas lights (I did go with multi-color) and they’re already in disrepair. Actually they didn’t work right from the get go. Amazon makes returns fairly easy, but of course that’s not where the lights came from.

Are you happy with Rakuten so far? I’ve used Ibotta. Seems kind of time consuming and I hate when I don’t think about it beforehand.

I’ve heard rumblings of my state implementing a 50 cent fee for all deliveries. Does your state do anything this? In my opinion it unfairly targets the disabled community who depend on these services. Not only do I get groceries delivered I get medications and medical supplies. Hopefully those items would be exempt. Definitely something I’ll bring up if the meeting with the legislator ever comes to fruition.

[deann-r]

Coats were my nemeses for years until I discovered the plush poncho. So much easier. A couple years ago I even found a heated one. I’d link it but I don’t think they sell it anymore. It’s large enough to cover my joystick on colder days. Funny though, kids think I have no arms and wonder how my chair is moving.

Have you seen the armless jackets football players wear on the sidelines in inclement weather? I’ve always wondered if they’d be big enough to cover my entire chair and not get tangled in my tires.

[deann-r]

Good question. My family struggles finding gifts for me. It’s hard for them to know what would actually be helpful. I don’t give lists either because I kind of enjoy seeing what they come up with on their own. It can be interesting to say the least.

Is there anything in particular you’re struggling with? Typically I try to identify a problem, then find if there’s a gadget that can offer a solution. On my wish list (even though I don’t make lists) is a towel warmer. I’m always cold after a shower and maybe a warm towel would be the ticket. Has anyone tried one?

[deann-r]

It’s funny you should mention establishing a long-term relationship with an agency. I’ve actually been with this one for over 20 years. Last fall they denied an overtime request for a caregiver to attend an appointment with me. I was livid because they approved it without hesitation the previous year plus they know how difficult staffing is. My appeal was successful, but how frustrating.

Interesting how tourism plays into staffing. I’d never have thought of that. Here I usually find staffing easier in the summer. Except over holidays of course. Just curious, how cold do your winters get?

[deann-r]

I’m sorry to hear you’re struggling as well. It sure isn’t easy. Thanks for sharing!

[deann-r]

Thanks for sharing. I’m holding off for now as I really doubt it’s a beneficial resource where I live.

[deann-r]

That’s the trouble I’m finding with the agency as well. They have their own portal where you can post open positions. Problem with that is the only traffic it gets are employees actively seeking more hours. We all know how common that is.

[deann-r]

I’ve never had as much trouble as I have now. If it wasn’t the middle of winter I’d seriously be tempted to hand out help wanted flyers door to door. Did you find your two reliable workers through word of mouth? I’m always a little hesitant to do that as well because if it doesn’t work out I don’t want it to ruin two relationships.

[deann-r]

The local tech school was one of my most promising avenues. The hurdles to advertising when you’re not a business are next to impossible though. I understand they’re trying to protect their students, but it makes it difficult for sure.

Not quite techy enough to set up my own website. Awesome idea though.

When you respond to someone through Indeed, how do you usually go about it?

[deann-r]

Definitely keep us posted!

[deann-r]

Hearing Australia makes me wish it was summer! Here in the US care really differs from state to state and depends on what programs you qualify for. Unfortunately a lot depends on your income. For myself Medicaid does cover my care, but I’m responsible for finding my caregivers. Sometimes there are grants that can be used to cover advertising but largely it’s on us. Do you get a yearly budget to work with?

[deann-r]

Maybe you’ll have better luck than I do. I’m hesitant to run an ad. For one it’s ridiculously expensive. Plus the quality of candidates last time was…interesting to put it nicely. Finally got my indeed.com account unlocked. I’ve had a few candidates, but when I try to message them I get no response. Not sure if I’m doing something wrong or they’re just not interested. After looking more into care.com I have to pay for a subscription to even send a message.

What’s your process for hiring?

[deann-r]

Thanks for the great information!

[deann-r]

As far as the Imodium, I do the liquid version so I can take it through my feeding tube. I was only doing half a dose once a day but my stomach would start to feel icky before it was time to take it so I now do half a dose twice a day. In the morning and afternoon. Helps for the most part.

It seems like constipation is more of a prevalent issue with SMA. I remember by brother struggled with it from the get go. Glad the feeding tube seems to have helped. What formula do you use again?

[deann-r]

Thank you so much for sharing such a wealth of information. Genius to seek out info from someone familiar with the sci community. I always think we can learn so much from each other. I agree it takes time to adjust and see what works for you. How long did it end up taking you to get your routine figured out?

I’ve seriously considered getting an spc but can’t get myself to look into it further. Honestly I don’t know the difference between an indwelling and spc. Do you have to go to the clinic to get yours changed or can you change it from home? Do you have to worry about infections?

[deann-r]

Glad, but not happy, to know I’m not alone.

[deann-r]

I guess the consent allows them to talk to the clinic and pharmacy if there are insurance or shipping issues. Sounds like without the specific consent they can still answer my general questions. Since I don’t feel motivated to do the consent I might just leave it at that.