Invest in Adaptation or Hope?

Here we can discuss difficulties with comfort in sitting and normal living - cushions, bicycle seats, car seats, work stations etc.
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Grace
Posts: 56
Joined: Wed May 08, 2013 4:18 am

Invest in Adaptation or Hope?

Post by Grace »

I am beginning to think it is worth it to break the bank for adaptations rather than medical procedures. The more I read, the more it seems to me that only the lucky few recover from this mysterious illness. If I lose my job, it's an automatic bank breakers: 2/3 of the family income gone, insurance gone... UGH!

BEHOLD my dream desk/chair all-in-one (provided rotating icepacks...)
And another alternative so that I can actually work lying down. Lying down seems to be what I'm best at these days.
I've got a crush on Ergoquest...

Image
Image
Anal/rectal pain began 12/12 | Pain advanced to entire pelvis by 2/13 |
PF PT 2/13 to 7/13 |Acupuncture 7/13 to present
Pain is CONSTANT, made worse by standing, walking, kneeling
UNBEARABLE with sitting |Cushions mock me
20+ years of fibromyalgia | Interested in not losing my marbles...
My goal: To find creative ways to live and work with PN, while pursuing wellness.
merrie
Posts: 114
Joined: Wed Oct 27, 2010 10:32 pm

Re: Invest in Adaptation or Hope?

Post by merrie »

Grace this looks amazing. How much does something like the first item cost?

Merrie
PNE onset 9/2008
Weekly pelvic floor PT since 9/2008
Numerous nerve blocks 2008 - current (pn, s2-s4 epidurals, pelvic/lumbar/splanchnic sympathetic)
PRF s2,3,4 May 2009
Numerous hip injections and trigger point injections
Numerous rounds of botox (first 12/08 - most recent 5/13)
Hibner consult / Kalinkin MRI 11/10
PT with PHRC in May 2013
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Grace
Posts: 56
Joined: Wed May 08, 2013 4:18 am

Re: Invest in Adaptation or Hope?

Post by Grace »

The prices vary but the desk/chair combo in the pic is $3595. If only I could get a prescription for that baby! I'm telling you, that would be a game changer for me.

They are custom built. Designed according to your needs.

Ergoquest.com

I'm in love! :)
Anal/rectal pain began 12/12 | Pain advanced to entire pelvis by 2/13 |
PF PT 2/13 to 7/13 |Acupuncture 7/13 to present
Pain is CONSTANT, made worse by standing, walking, kneeling
UNBEARABLE with sitting |Cushions mock me
20+ years of fibromyalgia | Interested in not losing my marbles...
My goal: To find creative ways to live and work with PN, while pursuing wellness.
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Violet M
Posts: 6679
Joined: Mon Sep 06, 2010 6:04 am
Location: United States
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Re: Invest in Adaptation or Hope?

Post by Violet M »

Grace, I think you should invest in adaptation. :lol: (Although being one of the original founds of HOPE I do sort of like the name :P )

Are you thinking of having this at work or at home?

I have a great home set-up that is a fraction of the cost . If you are looking for a home set-up I can give you some ideas.

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
kathyd
Posts: 699
Joined: Mon Dec 20, 2010 8:48 pm

Re: Invest in Adaptation or Hope?

Post by kathyd »

Hi Grace,
Sorry to hear about your severe rectal pain. I have it as well. It is mind-numbing (is yours of the throbbing or burning nature?)
I hope that you can continue to work!
I am pursuing agressive pain management as I like you I do not to want to spend my life at home!

just wanted to tell you about a much cheaper table you can use to type on ....(tho the table set -up you showed us looks fabulous) How much is the table?

I bought something called the Laptop Laidback,,, it is very inexpensive and adjustable for the size of your computer ... it can be raised or lowered. It can also be used for books or writing, but its' best use is for laptops.

It was recommended to me by another patient and HOPE member "Lotta Nerve" (who by the way is doing very well now) due to a pain treatment that worked out out well for her...so there is HOPE.... read her story on this site.

Anyway this table has been great for me .... an easy way to comfortably type in bed. (Its a bit flimsy, but I have sure gotten my money's worth out of it...My family uses it as well. Look up Laptop laid back ...for cost info etc.
Hope that you can find pain relief .Don't give up Hope or resign yourself ...with pain relief (God-willing)one can get out there in the world again!

BTW, Violet if you have adaptation ideas (for seating, for instance are they posted? ) my goal is to great driving again somehow.. To have that independence again would be wonderful.. With anal pain its tough as the pain occurs when the anal rectal area touches a surface,but I want to find a way to sit long enough to do the above. Thx! and good luck to all,
Kathy
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