HOPE

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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HerMajesty
Posts: 1134
Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

Re: HOPE

Post by HerMajesty »

I know what you mean, Me starting with IC when I was 14 and now this neuropathy for 5 years, I don't remember what normal is at all. To us, normal would not even feel normal.
There is a wonderful song about this I have on a CD compilation I made off itunes so I don't even remember the name; probably, "Our hope endures", but it goes like this:
"Sometimes the sun stays hidden for years, sometimes the sky rains night after night, when will it clear? But our hope endures the worst of conditions; it's more than our optimism. Let the earth quake, our hope is unchanged...Emmanuel, God is with us, El Shaddai, All sufficient, we never walk alone, and this is our hope."
That is the reality isn't it? If our focus was on our circumstances and not on God Sunil, you and I with our lifetime of this would be lost. But what we have here is not all there is. Hang in, Brother!
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.
Mod8
Posts: 685
Joined: Thu Sep 02, 2010 2:18 pm

Re: HOPE

Post by Mod8 »

Sunil,

This pain often leaves us with the awful feeling of the pain rollercoaster. Up and down, sometimes better, sometimes worse. It is very much two steps forward and one back all the time.
Living in Australia I can only advise that you stick with Prof. Vancaillie and Sherin and don't ever give up. I have days where my pain level is worse but I try not to stress about it any more.
Do what you have to do to get through your day as best you can. Keep in touch on a regular basis and take one day at a time. We're with you all the way.

Unfortunately we have to be patient with our slow treatment plan and progress. We only have a few medical specialists here in Oz to help where no others would. Are you far from Randwick? Can you get to your appointments easily?
don't give up. It's difficult I know, but we understand exactly what you're going through.

keep in touch.

Catherine
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Karyn
Posts: 1655
Joined: Fri Sep 17, 2010 12:59 pm
Location: Lowell, MA

Re: HOPE

Post by Karyn »

I think you can maintain hope, even if you've endured many disappointments if you adopt the attitude that EVERY DAY IS A NEW DAY. And each new day is an opportunity to move beyond yesterday, with new possibilities.
Well, works for me, anyway!
Warm regards,
Karyn
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
florabunda
Posts: 11
Joined: Tue Sep 21, 2010 10:44 pm

Re: HOPE

Post by florabunda »

Despite all my sorrow
Do I want tomorrow?
Maybe not for me
But for the things I wasn’t to see
So despite my pain all so poor
We have to be absolutely sure
Tomorrow may never come
Reality since life began
Maybe better than nil is less
Kiss the World and bless
Thank you for today
There is no more to say
Other than say God bless all
The little ones not so tall
Bash the part where we do not cope
Replace it all “ability to Hope”
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Amanda
Posts: 450
Joined: Thu Sep 02, 2010 2:33 pm
Location: Dublin, Ireland
Contact:

Re: HOPE

Post by Amanda »

HOPE is a basic necessity.....we all strive to live for another day hoping that it may be better than the previous one....and in the hope that tomorrow may be even better...!!!
It is hard to accept that todays pain is acceptable.....not knowing when you go to bed tonight whether it will be worse or better tomorrow.....!
We spend our lives wondering and worrying....we need to accept that with Gods willing that today is now and tomorrow is then...and each day is the now...we do what we can and what we cannot do we accept as a possibility in the future.
Thank you Florabunda for your great words.....you are very poetic!

Life is for living even if its limited.....but we have to remember that we are alive!!!
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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