Today I am..........

Here is a place for social chats with special attention to support and non medical discussions. We need a place to chill out, where we can distract from our pain and enjoy lighter moments, share a joke or funny moment with others.
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Amanda
Posts: 450
Joined: Thu Sep 02, 2010 2:33 pm
Location: Dublin, Ireland
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Today I am..........

Post by Amanda »

I saw this topic on another forum and thought it would be a good idea for HOPE to do something similar.

Today I am... the idea is to post a sentence beginning with 'Today I am...' Talk about special moments, difficulties or how an experience has made a difference to you today.
It may be an opportunity share with each other the important or special things that happen to us all.
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.
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helenlegs 11
Posts: 1779
Joined: Fri Sep 17, 2010 9:39 am
Location: North East England

Re: Today I am..........

Post by helenlegs 11 »

Today I am floating but dopey, dopely, floating.
I started taking Lyrica again to see if they could help this time. I had some 25mgs left so fairly quickly and easily got to 3 tims a day, but still though I should titrate up. A repeat prescription arrived after a confusion and conflab (GP would have to ask pain consultant, she wasn't available, mistakenly sent me gabapentin yada,yada ) meaning that I didn't have any for over a week but at last they arrived and I started up again.
I have just read the box and these ones are 150mgs, some repeat prescription , AND the munchies!!. . . . I have practically force fed myself nuts and raisins :shock: I've taken 2 tablets today, still thinking I needed another, decided 2 was enough and THEN discovered the dose increase. What a nit,. . . a floaty, dopey nit that is :)
ALWAYS READ THE BOX!!!
Last edited by helenlegs 11 on Sun May 05, 2013 9:33 am, edited 1 time in total.
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
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janetm2
Posts: 987
Joined: Sun Jun 12, 2011 10:54 pm
Location: Maryland

Re: Today I am..........

Post by janetm2 »

Today I am happy to lay out on my lounge on the deck listening to the waterfalls of our pond and gazing at the lovely flowers my husband planted around it... Not to mention having a clearer brain getting off the crazy pills ( oh Helen we understand!)
Janet
PS Amanda thanks for this and other recent posts all good ideas.
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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catherine a
Posts: 291
Joined: Sat Sep 18, 2010 4:46 am
Location: Perth Western Australia

Re: Today I am..........

Post by catherine a »

Love this topic Amanda :)

Today I cleaned and moved my bedroom furniture around, cleaned out the bathroom, did some laundry, baked a cake then relaxed on my new Inversion Table which I bought for myself. No after effects either from moving the furniture.
Now I'm off to have a nice warm shower and relax in front of the TV. Definitely doing a whole lot more these days. I live for today and don't worry about tomorrow.

Catherine
2004 PNE following vag. hysterectomy and A & P repair. 2007 TIR surgery France. severe entrapment at Alcocks canal & SS ligaments . Have my life back. 90% cured.No longer have medical appts.or physio.Some pain remains but is tolerable. 2012 Flew from Australia to the UK without pain flare. Very manageable. Almost back to normal. Now hold support group meetings at KEMH Subiaco Perth WA. Every 2nd Sat. of the month. Still pace my activities. PN doesn't dominate any more.
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Violet M
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Joined: Mon Sep 06, 2010 6:04 am
Location: United States
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Re: Today I am..........

Post by Violet M »

Today I am sitting here wishing all of my PNE friends were doing as well as I am. Some of you are truly amazing to be so upbeat despite all you have been through and are going through! My thoughts and prayers are with all of you.

Did some high intensity training today. :shock: Never thought I would be able to do half as much as I can now.

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.
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Anne smith
Posts: 72
Joined: Wed Feb 08, 2012 12:44 pm

Re: Today I am..........

Post by Anne smith »

Getting over two crazy busy days at work! Yesterday!! Three reystyles two sets of highlights three cut and blows!! Major pain flare!!!today! Only day I work full day! Dragged myself up at seven thirty! Felt crap(to much wine to help pain?? Not to busy day but needy clients! Off to bed soon! Burning like the devil up my ars..! But hey hoo another day with a functioning pne sufferer(my penance for going on hols in eight days time!( the world stops if my clients don't grab me before I go!
Should I pack in and go on benifits(I have got a degree of inability, an iliostomy! Not a chance! Distraction distraction!
Iliostomys at twenty five, just after delivery of baby
Started with rectal pain about twenty one years later
Ten years to get diagnosis, had to research myself!
Two horrific surjurys two(mend) a perennial hernia
Now with mr baranofskis team and traveling to London shortly for injections into alcocks.
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rea
Posts: 123
Joined: Fri Sep 07, 2012 8:16 pm
Location: USA

Re: Today I am..........

Post by rea »

Today I am groggy/dopey cause I grabbed the wrong bottle of meds...went for gabapentin but ended up taking pain med. that I had taken 2 hours before. Threw up what I could. Now my sis is taking over my med distribution... :) :roll:
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DnS
Posts: 4
Joined: Tue Apr 23, 2013 2:17 am

Re: Today I am..........

Post by DnS »

Today I swept floor tried to clean and straighten house. Mostly just laying in bed on side with tens unit on for most of the day. Just trying to take it easy so I can stand all day at work tomorrow but hey....at least I can still work.
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helenlegs 11
Posts: 1779
Joined: Fri Sep 17, 2010 9:39 am
Location: North East England

Re: Today I am..........

Post by helenlegs 11 »

Today I am enjoying the sunshine streaming through the blinds as I lazily and happily remember what a wonderful day yesterday was.
Most of my fantastic family spent the afternoon in Cleadon park for a birthday picnic party for my 6 year old 'nephew' (my nieces son)
So much food, and drink! although I was driving :( .
We played games, pass the parcel (of course) etc , including my favourite. . . . ROUNDER'S!!. . . . . I was picked last ;) but can still bat OK.
Tilly, our puppy (although 6 months now) was a star and always came back to Tilly COME!! even though she was desperate to make forever friends with every dog that came into the park. You meet and chat to a lot of people with such a sociable pretty puppy :) .
Up at 4 am in considerable pain but the drugs do work and much improved :)
Take care all
Helen
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
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Grace
Posts: 56
Joined: Wed May 08, 2013 4:18 am

Re: Today I am..........

Post by Grace »

Today I am wondering why it seems like I've had PN for years when it's been only 9 months. Is...time...slowing...down? :o
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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