I feel absolutely on top of the world but still in agony. I managed to drive this weekend; two and a half hours with quite a lot of stops to go to an event I'd been longing to attend and had been so upset that I thought I was going to miss it. I did have to cancel my Birthday weekend away the week before but thanks to two lengths of memory foam under my legs I managed to sit in my wheelchair and my car. We stayed two nights and the hotel bed killed me and not enough pillows to prop up my leg (SI joint) but then I thought to use the memory foam and I'd taken a sleeping bag in case the bed was too hard so I lay on that with the foam under my leg and slept. I've barely been able to move since I got home Sunday and the pain is through the roof but it was so so worth it. Sometimes you just have to accept the flare up and go for it.
Only bad thing- I caught the dreaded lurgy from someone and the coughing is killing my back. I hadn't left the house barring doctor or hospital appointments since last October and first time out catch whatever's going round.
Next goal I'm still working on a way to make my mobility scooter "sittable" so I can go out alone.
Success
Re: Success
Poppy, I'm sorry you are having such a flare-up and cough besides. You've been shut in far too long so it's good that you were able to get out for something you really enjoyed for a change.
I'm interested to hear more about your plans to make your scooter "sittable". If you come up with something that works please let us know.
Violet
I'm interested to hear more about your plans to make your scooter "sittable". If you come up with something that works please let us know.
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.
Re: Success
I certainly will but so far no success. I've bought numerous toilet seat raisers, coccyx cushions, foam pads but still can't use it. It feels to me to be more of a problem with the upright back to the seat which pushes my tailbone down into the base. I will try various lumbar supports.
1985 diagnosed fibro; 1990 hysterectomy with bladder suspension;2000 T12 (Maigne ) syndrome; urticaria and angioedema; sjogrens syndrome; adhesions; pelvic pain; two herniated discs in neck.
Re: Success
Poppy,
You are ahead on the devices but I can xay I have been out of the house more than you. I am glad you were able to enjoy the event. I am awaiting a new wheelchair and roho cushion so I can go on a mini aniversary vacation. We cannot go to Disney as planned but Delaware and PA for a long weekend. I hope I can get through part of a museum shifting between sitting and standing and my two ailments. I have not tried the scooter since the parts are too heavy for me to lift so my annual Mother''s Day shopping with my friend is just lunch this year, but grateful I can do that. Best of luck and the scooter may be something I can try at Longwood gardens with my homemade cushion. Trial and error and we will find ways to enjoy some of our lives!
Janet
You are ahead on the devices but I can xay I have been out of the house more than you. I am glad you were able to enjoy the event. I am awaiting a new wheelchair and roho cushion so I can go on a mini aniversary vacation. We cannot go to Disney as planned but Delaware and PA for a long weekend. I hope I can get through part of a museum shifting between sitting and standing and my two ailments. I have not tried the scooter since the parts are too heavy for me to lift so my annual Mother''s Day shopping with my friend is just lunch this year, but grateful I can do that. Best of luck and the scooter may be something I can try at Longwood gardens with my homemade cushion. Trial and error and we will find ways to enjoy some of our lives!
Janet
2007-08 pelvic muscles spasms treated by EGS. 6/27/10 sat too long on hard chair- spasms, EGS not work Botox help, cortisone shots in coccyx help, still pain, PT found PNE & sent me to Dr Marvel nerve blocks & MRN, TG left surgery 5/9/11. I have chronic bunion pain surgery at age 21. TG gave me back enough sitting to keep my job & join in some social activities. I wish the best to everyone! 2019 luck with orthotics from pedorthist & great PT allowing me to get off oxycodone.
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HerMajesty
- Posts: 1134
- Joined: Sat Sep 18, 2010 12:41 am
- Location: North Las Vegas, Nevada
Re: Success
This is awesome news, good for you! Getting out to do things you enjoy is worth the cost and it's great that you have the tenacity to never stop trying to get more out of life.
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
Re: Success
Well done Poppy for making your weekend trip. Its always a fine line between providing comfort for you and trying to push the line over the top.
When away i always try to provide my own pillows and ice of course haha...I am the Ice Queen after all.
Maybe some lidocaine patches may have helped you along your journey?
Its always good to look back on trips even though its got a payback in a flare up....but at least you did it.
I hope that you can rest now and catch up on comfort.
When away i always try to provide my own pillows and ice of course haha...I am the Ice Queen after all.
Maybe some lidocaine patches may have helped you along your journey?
Its always good to look back on trips even though its got a payback in a flare up....but at least you did it.
I hope that you can rest now and catch up on comfort.
PNE started 2003 following Vaginal Hysterectomy, pelvic floor repair and right oophorectomy; eventually after many tests had BilateralTG surgery Nantes 2004; following this tried many other treatments including 7 day epidural, ketamin infusions to no avail; Trialed and was implanted with a Neurostimulator in 2007- Dr Van Buyten Belgium, this has enabled me to manage my pain much better.