Author Topic: I'm back!  (Read 1158 times)

WheeledTraveler

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I'm back!
« on: November 09, 2012, 08:12:29 PM »
Hiya!

I ended up with an unexpected hiatus from most things online after ending up in hospital in mid-October. I went into the hospital with what seems to have been the worst back spasm imaginable (I couldn't roll over, stand up, sit up, or even do much moving lying down without the pain getting worse than it was when I was post-back surgery). Then, being in the acute-care hospital caused more de-conditioning than it should have so I ended up going into a rehab hospital. I was admitted to the rehab hospital under what was supposed to be a "acute rehab" program that would have only had me in for 3-5 days. Instead, the physios and OT did their evals and wanted me in 3-4 weeks. My health insurance wouldn't cover that much, but I got 2 weeks out of it. Gotta love US "health insurance" ;) I finally came home Monday evening and am slowly getting back to things. I don't know if I'll completely catch up on the boards here, but I'm going to try to get back into the habit of reading daily, at a minimum.

The bad news was that I spent 3 weeks in various hospitals. 

The good news is that I've come out of it all with far better pain management and a better foundation going forward.

I don't know what rehab hospitals and in-patient rehab programs are like in the UK, but in the US they pretty much all depend on your needing to go to them directly from an acute-care hospital. I probably could have used the intense physio and OT years ago, but there's no way to get them outpatient. As well, it's gotten me hooked into access for other services that are hard to get access to other ways. This hospital didn't have much experience with EDS, but the minute they knew I was coming in they started researching. The research was good enough that I had no clue I was the first EDSer the physio had treated. He also had a student working with him and she was really good (I've often had good experiences working with physio students who are doing work-placement parts of their degree).

One thing that worked extra well for me, was that the way that this rehab hospital does their intensive in-patient rehab is that all therapies are broken down into 30 minute chunks. So I'd have 2-3 hours of therapy a day, but in 4-6 sessions a day. That meant that I had recovery time between therapies. They were also very good about arranging so that it fit how I best function. For example, showers drain me of all energy so on days I showered with OT it was the last thing scheduled for my day.

There were other things I was going to ramble about, but the home visit physio is supposed to show up and I've now forgotten about them.

I'll either add here or I'm happy to answer questions from anyone. I know my experiences aren't directly relevant to most of you, but if you're interested in hearing more about it, I'm happy to talk about it. I may also end up being a spokesperson for the rehab hospital I was at because I feel so strongly about how good my care was there :)

ditchdwellers

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Re: I'm back!
« Reply #1 on: November 09, 2012, 08:38:45 PM »
Sorry to hear that you've been in hospital for such a long time, although your progress sounds good.

I attend an inpatient rehab programme at my local hospital each year and find it really helps set me up for the next year.  The programme runs for 2 weeks (we're allowed home at the weekend) and the treatments are split into manageable chunks, like yours.  We have a timetable which has group exercise, relaxation, hydrotherapy, and physio scheduled in.  We are encouraged to use the gym as much as we feel able and the whole programme is set up to motivate us and get us fitter and more mobile, within our capabilities.  It's also a useful time to review medications and try out new meds if appropriate.
I've never met another EDS patient while I've been there, but seeing as it's a general rheumatology programme, most people have pain, inflammation, muscle weakness, and circulation issues, so we always find plenty in common.  The programme I go on is brilliant and I'm lucky to have such a unit close to me.  Not all areas have specialist inpatient rheumatology units that run such comprehensive rehab programmes so I'm very fortunate.  There's a bit of a waiting list to get in, and it usually takes a couple of months from the date of referral by the consultant to admittance, however that suits me fine, as it gives me time to arrange things at home so that I can go away for my 'holiday'!

Will your health insurance pay for you to go into rehab regularly?  I find it really helpful in helping me to be as well as I can be.

Hope you continue to feel the benefits of the rehab for some time to come.

devine63

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Re: I'm back!
« Reply #2 on: November 09, 2012, 10:30:05 PM »
Hi

Glad to hear you're doing better.

I don't have personal experience of rehab to share, but I'm very interested in neuropsych stuff so would like to hear if you want to share WT.
regards, Deb

Yvette

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Re: I'm back!
« Reply #3 on: November 10, 2012, 09:23:52 AM »
Welcome back. Good to see you again.  >thumbsup<

Sunshine Meadows

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Re: I'm back!
« Reply #4 on: November 11, 2012, 11:20:17 AM »
Good to see you back here  >bighugs<

My GP has mentioned intensive rehab to me to which my response was  >yikes< because the hosptial location is an hours drive away. I am seeing the Neurolgist this week so will find out more about what next then. I have been going to physio for a few months after a leg injury, the physio recognised I need more help with other things especially standing and balance, so he was the one who suggested going to see a Neuro before I talked to me GP about it. It has been difficult talking to my GP about it because she knows how upset I get about the whole thing. There comes a point where me being an 'ostrich' need addressing.

Hurtyback

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Re: I'm back!
« Reply #5 on: November 11, 2012, 08:58:37 PM »
Welcome 'home' WT, I am glad that you have found the intensive therapy helpful.
 
 

WheeledTraveler

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Re: I'm back!
« Reply #6 on: November 20, 2012, 05:49:18 PM »
Sorry, readjustment into everyday life is still taking longer than I expected so I kinda ended up disappearing again.

ditchdwellers, even if I could get insurance to cover it (I can't) there's nothing in the US that does a year rehab program or anything similar to the program you've been to. The US system is not set up to do anything for preventative care or quality of life, just to pay for fixing after things happen and even then they'll generally only cover until you're 80% recovered. This is how I came out of rehab still not as mobile as I was before I went into the hospital without having had any sort of injury that would prevent full recovery.

Right now I'm doing in-home physio twice a week. I had an OT in, but she didn't do much. Some of that may have been my not knowing what to do with her, but I think I also mostly needed her to make sure I was safe doing things like showering so once she could sign off on that, less was needed. The physio is going okay, but not great. It's still good that I'm keeping up with it, though!

Deb, which neuropsych stuff are you interested in?

Sunshine, the place I went for the inpatient rehab was 45 minutes away. There was another good place I could have gone that was an hour away. I went to the closer place because I knew my grandmother had had very good care there, even though the farther away place probably has a slightly better reputation. I wouldn't have been able to do the intense physio if it had been outpatient so the distance was less of an issue. I may ultimately do some outpatient physio there, but only because I struggle to find any decent physio for EDS and they're the place I've been that was the best and working with it and in learning about it. Also, my mum can drive me down so I wouldn't have to worry about the transportation myself.

Sunshine Meadows

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Re: I'm back!
« Reply #7 on: November 20, 2012, 06:17:52 PM »
Wheeled Traveler,

Good to see you back again.

I think just being able to chose between two different places to go for physio can make a difference so it is good you had a choice.
I just looked at the date of my last post to this thread and it is hardly any time ago, but today I was discharged from physio because after going to see the neurologist last  week and looking at the progress made it is clear my progress has plateaued. I am so glad I took up the offer to go to physio, not only am I physically stronger and have somewhat better balance but I feel more myself. It probably sounds a bit daft but life pushed me hard and I pushed back, less a victim of circumstance and more a participant in living.

It is good that you are keeping up with physio hang in there to get to the best you that you can be  >erm< gosh hope that does not sound too cheesy.

devine63

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Re: I'm back!
« Reply #8 on: November 21, 2012, 12:57:05 AM »
Hi WT


"Deb, which neuropsych stuff are you interested in?"

Pretty much everything, I was originally planning to be a neuropsych, but I could not get into the clinical psych training which I would have had to do before I went on to do neuropsych training.   It was neuro rehab I hoped to work in.
regards, Deb