To sit or stand?

[Dizzyblonde]

My husband and I have put together a cushion which is as comfortable as I think I'm going to get. I'm totally fed up and sorry about the whole ordeal at the moment. The pain, the social isolation not even to say the limitations I have with my very own family, husband and two children (22 & 24) who have the most wonderful new partners that I can't become acquainted with because I'm always so unhappy or just distressed with pain (so sorry about the whinge) and embarrassed to reveal to these lovely people the nature of my complaint. Anyway after that big blowup all I wanted to ask was if I can manage to sit for meals and hopefully get in the car to go to the local shops using this cushion, is it ok or does it compromise the peudendal nerve more? On another note I've read so much about the surgery and tried to form a decision what is best for me and I've pretty well decided to go with the bilateral TG nerve release with spinal stimulator. If I jump through all the hoops best case scenario would prob be some time in February. Wish me luck with my decision, yikes! Prof Thierry Vancaillie of Sydney, Aust is the man. I'll be taking a list of questions with me on my next visit but all advice is welcome. Thanks again for listening to my rant but I did actually ask a question or two as well

[Earl]

Hi Dizzyblonde,
I definitely understand the 'whine'. I live in a constant battle to show or not to show how much I'm going thru. I have 5 kids 6-20 years old .i want their Daddy to smile and show some joy in the little things.Recently my daughter was married and I was hoping not to be noticed by the almost 300 guests as I walked up the isle to give her away and then kneel beside my sitting wife and kids at the front. The wedding photos also showed what I'd known already ,I suddenly look 50 not 44.As far as sitting I keep from it ALWAYS because of the fear of causing more damage. Most PN information would say the same and that the 'no pain no gain' line does not apply to PN. If it doesn't seem to cause worsening symptoms then maybe in moderation is OK. Im only going by what I've heard.
I sure wish you the best with your surgery !!! They say recovery is slow . Some don't show improvement for 4 months or more. Don't get discouraged when it doesn't improve promptly . In its time hopefully you'll be one of the cured ones!!!
Earl

[Dizzyblonde]

Gidday Earl, thankyou for your compassion it's much appreciated. I wish you weren't in the same boat as me and that aspect of your post gives me no comfort. I feel your pain at your daughters wedding, wanting to soak up every minute of the joy whilst battling the pain, it's an isolating feeling. I think every person on this forum gets it Earl. And yes, to show the pain or not, I try to give my family as 'normal' a home life as possible without showing the pain but every so often I just loose the energy to put up the pretence. I love my family for it because they really do understand. Thankyou for your words of support regarding my upcoming surgery, I have to pass the psych test first and my specialist has to put my case to his 'team' before I get the go ahead but I'll just jump through the hoops and see where I end up. Technology has improved and it appears to be a field where knowledge is increased daily. This forum provides so much information and whilst I don't get comfort from anyone's pain, I do feel less isolated and by reading many posts about my specialist I feel much more confident in moving forward with the surgery option. And yes Earl, there are success stories and I reckon your surgery in March and mine probably in February might just be the two next big successes!!
Cheers, Judy

[janetm2]

My heart goes out to both of you and hope the surgeries are successful. I am glad you were able to attend your daughter's wedding Earl no matter how. I had to miss my nephew's college graduation and niece's high school but worse was the 3 years of not seeing my brother. Luckily I finally recovered enough to get to see him last summer as he died in November. My family worked with me so I could visit and lay down most of the timeeven with the surgery I still limit the sitting. My cousin suggested we have dinner up at her hotel then hang out in the lounge which had sofas I struck the old fashioned fainting couch pose like in the old movies. Guess sometimes you just have to have a sense of humor. Earl is right about the long recovery not sure I could imagine it without going through it and still going. However I can now do the eating out and sat through the full Catholic mass for my brother's funeral on my roho custom cushiion and have another one for work. I still am trying to find workarounds to do more but I know I was lucky to avoid losing all capability before getting surgery. There is hope and I have not given up and expect I still have more recovery ahead. Take Care
Janet

[Dizzyblonde]

Thanks Janet for your well wishes, I'm nervous but need to keep moving this forward even if it is at a snail's pace! And yes good humour can most often be just the eight salve for the soul. My husband has an abundance of good humour and I'm forever thankful to have that in our lives. I'm laying here in my bed tonight sipping on a glass of champagne which I added a quartered succulent strawberry. I've decided to spoil myself with whatever might improve my spirits in these trying times. I'm also laying on that same bed I call home-base these days, in my new clothes I've purchased online and had delivered right to my door. I've still got the tags on (they're nice and soft for my sensitive spots!) and it's improved my morale just a bit also. Lots of little things make for a happier lot and don't forget we are all on this forum just treading water until our big recovery. I've had quite a few traumatic things go on in my life from operations (not all listed in my signature!!) and I've come out on top with them all so we just have to bunker down, learn all that we can, make informed decisions and go with it. Now I think the bubbly might be joining my conversation so on that note I wish everyone well and thankyou to Earl and Janet for your words of comfort
Cheers, Judy

[Violet M]

Hey, Judy. Would love to join you for a little chat -- with your bubbly and new outfit. Interesting how friends halfway across the globe are the ones who understand the most. I remember 9 years ago all I wanted to do was somehow survive until my son's graduation and figure out a way to get through it. Well here I am several graduations and weddings later doing things I never dreamed would be possible. So, dare to dream a little bit and stay positive. Glad your husband is supportive.

Violet

[Dizzyblonde]

Hi Violet, so does it appear I have a like minded soul out there? I'm jolly pleased about that and I'm so so pleased for you Violet having come out the other side with life full and happy once again. We all sure deserve it and I try to convince myself daily that it would be a waste not to gain some kind of happiness each day while I'm in the 'holding pattern' because once I'm up and running again, it wouldn't have been a complete sorry waste. That's not minimizing my or anybody else's pain on this forum mind you it's just a positive way of coping I suppose. I'm laying here today (too early to drink!) in one of my new outfits on my big bed, with this stunning intricate necklace I borrowed from my daughter looking all glam with makeup and hair all boofy! And just one funny thing to tell Violet, when I had my latest interview with my specialist and was sobbing away as he told me perhaps the next step is a bilateral TG nerve release AND nerve stimulator implant, I promptly said "I suppose you could say I'm going to have a BionIc Bum"! He actually let out a genuine laugh!
Ready for a chat any time, thanks for your support
Judy

[Violet M]

Would love to see the boofy hairdo, Judy. I'm assuming it's blonde? (So's mine)

I love your positive attitude and determination to fight your way through this. We do have some real fighters on the forum, including Amanda who considers herself to be partially bionic with the neurostimulator. You can read some of her posts in the neurostimulator section of the forum. You truly deserve some pain relief after all you've been through and I hope this will be the answer for you. I'm sure you have a few qualms about yet another surgery though.

Cheering you on from the USA,

Violet

[helenlegs 11]

Thanks for the smiles people.
Now I just need some boof and I can recline like an old cinema star Janet, just need to practise the faint now
Hmmm, perhaps a glass of champagne might come in handy too, well, you never know. . . . . (it will, it will )
I'm sure you were excellent being father of the bride Earl, are the rest girls too? if so OMG!
My only addition to this conversation is stolen from Voltaire.
'Life is a shipwreck! We just need to remember to sing in the lifeboats'
Not sure how much of my lifeboat is left, but I will continue to sing!
Tomorrow. . . I may wear a tiara (once boofed obviously)!
That was me, not Voltaire (he wouldn't look that good in one).
Helen

[Dizzyblonde]

Oh Helen, you go girl. That was a magnificent post and I can see you with your boofy hair, tiara atop and sipping a little bubbly taboot! Your quote: 'life is a shipwreck! We just need to sing in the lifeboats'. That is extraordinarily apt of all us sufferers. It's only that singing which keeps us afloat at times. Our frivolity never diminishes our struggle but I have to believe that my outcome as each and every one of us needs to believe that their outcome will be successful too. It's just the journey.

My girlfriend emailed me today and asked if I'd made a New Years resolution. I think everyone on this forum would prefer a New Year's wish (no guess what that might be!) I replied no but that I had made an 'affirmation' "to allow myself whatever indulgence I choose small or large in order to gratify/give pleasure to myself (strictly not sexual - ouch!) and to make the most from what life has to offer ME MYSELF AND I! Now does that sound selfish??? I hope so!" And no one in my family would want to deny me that wish, they see my suffering and appreciate the struggle. Obviously it was partly metaphorical and not completely practical but there's room to work within financial constraints!!

Now back to topic! I have an apt with the technician for the neuro stimulator on 18th of this month to discuss how the little bionic butt functions. Comes with remote, I get dibs on this one not like the tele remote! Pain levels are not fun and disability unchanged so am coming to grips with solution. Cross fingers I'm heading in the right direction. Take care all,