Old 09-14-2018, 09:40 AM #1 (permalink)
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Default Well, that didn't go as planned...

DH had his long awaited (3 months) wheelchair mods done yesterday. He got elbow blocks and arm supports, lateral supports, and a new headrest. He is not happy with most of them. Says they restrict his movement too much. He says he wants me to take them all off and go back to what he had, but I am trying to get him to live and work with them for a few days before giving up. He tends to have an all-or-nothing approach. It doesn't work, just get rid of it rather than try to figure things out. ARHG!!!!!

Just shot off an email to the PT and wheelchair tech from clinic asking to meet with them to try to work things out. We had been scheduled for clinic this coming Tuesday, but due to the Dr being out of town, had to be moved back to November. The PT is usually very responsive, so I'm hoping to hear back from her soon.

Me on the other hand - well my varicose veins have decided to act up. I've had problems with them forever, a combination of unlucky genetics and being overweight. Tuesday when the aide was here, I was putting on my shoes, when out of the blue, blood started spurting out of my leg. Picture if you stuck a pin in a water balloon. Yikes! I got it to stop and went to the Dr. Apparently this happens sometimes with varicose veins and they recommended I see a vascular surgeon to see what can be done. So this coming Tuesday, I have an appointment to be seen. And people wonder what I do on my "day off" when the aide comes. Of course, this is also all happening 2 weeks before my weekend away that I finally got covered and am really looking forward to. Fingers crossed they can get this figured out!

DH is calling me to get up. La, la, la, life goes on!
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Old 09-14-2018, 12:07 PM #2 (permalink)
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Default Re: Well, that didn't go as planned...

Oh, Jersey. Take care of yourself.

There are many ways to position the postural supports, fore, aft, left, right, and at different angles. Sometimes having just a left or right is best. Definitely starting from where he doesn't like it and trying "what-ifs" is the way to go.
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Old 09-14-2018, 07:13 PM #3 (permalink)
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Default Re: Well, that didn't go as planned...

Jrzygrl - I find my Brian can be very set in his ways when it comes to changes, like on the WC. Asking him to give it time, usually helps.

So sorry about your leg. Praying it doesn’t interfere with your time away.

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Old 09-15-2018, 11:40 AM #4 (permalink)
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Default Re: Well, that didn't go as planned...

So yesterday was frustrating, and today is continuing in that direction, if not going downhill. He had me remove the lateral supports and also wants the arm supports removed. I adjusted the headrest multiple times. He's complaining about the elbow blocks. He's angry that all the mods aren't doing what he wants, but is not willing to try to adjust. I'm online searching the Permobil manual to try to find anything that will help. Have not heard back from the PT yet.

UGH.
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Old 09-15-2018, 12:16 PM #5 (permalink)
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Default Re: Well, that didn't go as planned...

Hugs Jrzygrl - praying you hear quickly from the PT. We are very fortunate to have a very good WC guy who measures and orders changes and is very good at making the adjustments too. See if your PT can recommend someone.
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Old 09-15-2018, 01:07 PM #6 (permalink)
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Default Re: Well, that didn't go as planned...

Thanks, Sue.

I wish there was a way to try out these mods first, but I know that's next to impossible. Or a way to get them installed, then have a return service call in a few days to make adjustments. For now, I guess I need to learn to be a wheelchair mechanic. And a big dose of patience.
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Old 09-15-2018, 02:17 PM #7 (permalink)
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Default Re: Well, that didn't go as planned...

I am sorry it all comes down to you. For anything like this our OT always figured, measured, ordered then came and fitted, adjusted and taught us both what and how.

So any problems were not just dumped on me, and were being handled by someone trained in al lthis.

I hope your PT gets back to you and can work with him xx
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Old 09-25-2018, 10:17 PM #8 (permalink)
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Default Re: Well, that didn't go as planned...

Well, this has been interesting.

Hubby is still not happy with his chair. I made some changes for him, and then Facetimed with the wheelchair rep to make some more. There were some that the rep wanted to look into, so he is coming out tomorrow. Hope we get some resolution.

Then there's the issue with my legs. I went to the vascular surgeon last week who wrote a script for an ultrasound. The appointment was at 11 this morning. When the tech was doing the test, she discovered a blood clot in the back of my knee. Protocol says - I'm off to the ER. Where I wait. And wait. After 2 hours of waiting, I finally went to the back. The nurse checks my vitals and draws some blood. Then she starts setting me up for an IV. Whoa. I asked about what was going to happen. She said I'd probably get an IV drip, then be admitted! I flew into a panic. It was after 3 and DH's aide was already staying late. She's a single mom, so I KNOW she can't stay overnight. Texted DH and gave him an update, but asked him to wait on calling out the troops until I spoke with the doctor. Wait again... Luckily, when he came in, the doctor said if all my labs came back OK, he could write me a script for a blood thinner and I could go home and follow up with my family doc. Wait, wait wait. Finally, 6 hours after I entered the hospital, I left. Half a venous study done, script for Xarelto in hand. Ugh.

After I drove home and calmed down a bit, DH said his sister had called and asked him to call her. Yes, the sister who is coming to stay with him this weekend so I can have my get-away. She told him she was in for a catscan for kidney stones today! She said she's still planning in coming this weekend, but she has a follow up with her doctor on Thursday.

So I hold my breath and hope everything will work out

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Old 09-26-2018, 12:05 AM #9 (permalink)
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Default Re: Well, that didn't go as planned...

wow, brought back some memories of how quickly things can just fall in a heap when you have some medical issue other than your PALS to tend to!

I am determinedly hoping for you that you are going to get your time away, yes you will! feeling stubborn for you xxx
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Old 09-26-2018, 12:25 AM #10 (permalink)
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Default Re: Well, that didn't go as planned...

Hope you can still go. Make sure you take that blood thinner on a regular schedule...
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Old 09-26-2018, 08:11 AM #11 (permalink)
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Default Re: Well, that didn't go as planned...

Jrzygrl have everything crossed that you can still get away this weekend. I so know how you feel landing in the ER, esp when your PALS is at home, worried about you, while you are worried about their care.

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Old 09-26-2018, 11:19 AM #12 (permalink)
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Default Re: Well, that didn't go as planned...

Jrzygrl, hope you heal quickly and you get that get away! Kate
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Old 09-26-2018, 05:25 PM #13 (permalink)
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Default Re: Well, that didn't go as planned...

Oh my God. REALLY?!!! Damn.

I hope you make the trip, but PLEASE be careful. Take the blood thinners and take it easy!

It just never never ends....

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Old 10-01-2018, 05:27 PM #14 (permalink)
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Default Re: Well, that didn't go as planned...

A good news update.

I went on my weekend and it was wonderful! Got to spend time with 2 of my 3 kids and I SLEPT!!!!! Most people would consider it a pretty calm weekend, but for a CALs, it was heaven. My legs didn't act up too much. I did take a break Saturday to just get them up for a while. I feel SOOOOOO much better today!!!

When they were leaving yesterday afternoon, DSIL and DBIL both commented that they didn't know how I did it on my own. So I guess they "get it" now. And now I know that if I need help, they've at least done it once.

DH said he had a difficult day on Saturday (I think some of it was anxiety over me being away for the first time since dx), but he seems to be rebounding.

Thanks to everyone for your support!
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Old 10-01-2018, 05:46 PM #15 (permalink)
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Default Re: Well, that didn't go as planned...

Jrzygrl - that is so awesome to hear. I am so happy for you.
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