TIPNA

[guggi]

Friends, (if I have any), I am down. Very down. Although I do believe in my Savior and I know He helps me carry my burdens, often it seems that there is no one in my life who is my shoulder to lean on. Everyone in my family looks to me for strength and direction. It's a heavy burden to carry, and knowing that the same struggle with pain continues day after day adds to it.

I know I am not alone. I am thankful for this forum. For sharing and caring around the world.
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PNE after vaginal hysterectomy in May 2005. After 3 successful nerve blocks and PNE decompression surgery with Dr. Hibner, Phoenix, September 24, 2007, approx. 50% improved. Eternally grateful to TIPNA and Dr. Hibner.

[pomegranate]

Guggi, you're not alone. I know it can feel that way. I am sorry you are down and having a hard time. I will pray for you. You are such an encouraging and supportive person--I know why everyone in your family looks to you for strength! But you need to be cared for and you need to rest, too. Hang in there.

Lauren
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Lauren
Diagnosed 12/2009
Two nerve blocks
Currently pursuing conservative treatments

[Joan A.]

Hi Guggi,

I'm sorry you're feeling so down.

I'm going to share with you what a friend recently told me. He said, "I know you think your family is fragile, but right now you are more fragile than they are."

We need to take care of ourselves in order to be able to help others. Sometimes I ask that the creator help my family to carry their own burdens. Then, I leave the problem with him until I take it back again and have to start all over.

Joan
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PN symptoms since March 2003
Dr. Benson November 2003 PNMLT 2.1 both sides
Dr. Renney doesn't rec surgery for me because of other medical factors

[guggi]

Hi, Lauren and Joan,

Thank you both for your replies and encouragement. You both are right about letting them carry their own burdens sometime. It's good advise. I need to take care of myself. I have given and given to them and I am so tired.

I know there are better days ahead.

Love, Guggi
_________________
PNE after vaginal hysterectomy in May 2005. After 3 successful nerve blocks and PNE decompression surgery with Dr. Hibner, Phoenix, September 24, 2007, approx. 50% improved. Eternally grateful to TIPNA and Dr. Hibner.

[Stephanie P]

DEar Guggi,
I've sent you an email, but I just wanted to say publicly that your support for so many people on this forum is surely returned by each and every one of them. Don't feel you have to respond to my message. Just rest and absorb the caring thoughts. Stephanie
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Pudendal neuropathy (undiagnosed) since 1985. Worsened by an accident in 2003. PNMLT July 2004 5.7 and 8. Bilateral surgery in Nantes August 2004. No change.

[guggi]

Love you!
_________________
PNE after vaginal hysterectomy in May 2005. After 3 successful nerve blocks and PNE decompression surgery with Dr. Hibner, Phoenix, September 24, 2007, approx. 50% improved. Eternally grateful to TIPNA and Dr. Hibner.

[Charlie94]

Yes chronic pain can have a terrible affect on relations with your family. It affects everyone around you but you cannot help it.

A chronic pain doctor I went to see who had experinced chronic pain himself for many years himself once told me that chronic pain can sometimes make a patient come across as selfish, he said they are not though they are just trying to survive. I am not saying you have been selfish at all Guggi but I thought the doctor made a good point.

You have helped lots of people on this board Guggi and everyone appreciates it. Everyone with this condition needs a lot of support and I hope your family can appreciate you need this support at the moment. You should not feel guilty about reaching out to them even though it seems you have been the one in the past that has provided this support to them.

[guggi]

Yes, Charlie, your doctor is wise. Unfortunately, I have never learned to stand up for my needs on a daily basis. But, you are right, when I thought my life was over, I did fight for my right to live.

But, you see, now I am supposed to be all cured, all my needs are met, and I am expected to do what I have done for years. No one considers that I am only partially better. I listen to everyone else's complaints, pains that can be taken away with Motrin, but I don't complain - ever ... I have never been allowed to be sick, not even as a child. Oh, well, today is another day, and my tears can be kept in check unlike yesterday.

Thank you all so very much for your love and support! It means a lot.
I am sure we all share the same or similar experiences.

With love, guggi
_________________
PNE after vaginal hysterectomy in May 2005. After 3 successful nerve blocks and PNE decompression surgery with Dr. Hibner, Phoenix, September 24, 2007, approx. 50% improved. Eternally grateful to TIPNA and Dr. Hibner.

[guggi]

My friends,

I am surrounded with children this week, and following are a few thoughts I had while in the swimming pool with them. It's called

Ten

I want to be ten
I said to her.
Limbs slender and long
Muscles perfectly shaped
Skin glowing with light
Teeth smiling bright and shiny.
No hormones bending out of shape
Tight gluts and flat chest,
No subcutaneous fat to distort.
The mind on simple pleasures
Miniscule pains perhaps - at times.
Life so easy, so simple,
The future bright, happy, certain,
and forever.
Yes, I want to be ten
I said to her.

Oh no, I read Mom's journal
She said to me.
A break-up is threatening
and I am afraid
I'll tumble into the dark.

I felt my body and said
I want to be ten.

Just wanted to share. My little friend is 11, and I still want to be ten .
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PNE after vaginal hysterectomy in May 2005. After 3 successful nerve blocks and PNE decompression surgery with Dr. Hibner, Phoenix, September 24, 2007, approx. 50% improved. Eternally grateful to TIPNA and Dr. Hibner.

[Jeanie]

Thanks, Guggi for this lovely poem. This is how I feel too when I watch my grandchildren in the swimming pool. How wonderful to be a child again.

Being surrounded by children can be exhausting even for people who are not in chronic pain. Please take care of yourself too!

Love,
Jeanie
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PN diagnosis March 2010
PNMLT abnormal on left
3 blocks with brief pain relief

[guggi]

Jeanie, it was very sweet of you to take the time to respond. Thank you.

From time to time I just like to write down some thoughs that come to mind. I really have a difficult time getting old. If I could exercise and be painfree, I wouldn't feel half so old.
You probably feel something similar, eh?

I love children more than I can say. It is so difficult to say 'no' to them.

I want to share a laugh with you. Today my 21 months old grandson Damien pulled his diapers down, threw them on the floor with a defiant look at his parents and ran away laughing. His almot 4 years old sister Jennabelle exclaimed to her Mom Noelle: 'This is preposterous, Momi' - don't ask how she knew that word! They are just so cute and funny.

Love, guggi
_________________
PNE after vaginal hysterectomy in May 2005. After 3 successful nerve blocks and PNE decompression surgery with Dr. Hibner, Phoenix, September 24, 2007, approx. 50% improved. Eternally grateful to TIPNA and Dr. Hibner.

[TinyDancer]

Guggi,

I know what you mean about loving children. I was a foster mother to newborns for 10 years. They would stay with me until they were 6 months or so. People would tell me that I was doing a wonderful thing but that almost made me feel guilty because those babies gave me so much joy.

The joy went out of my lif because I had to give it up. Sleep became very important due to PN. But my life seems so empty without them. The ache that I feel every time I see a baby is so real. I keep thinking that maybe I could still do it.

I know this doesn't make you feel any better, but just know you can talk to me when you need a little joy. We can talk about kids!

Kate
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PN following childbirth 1968
trigger point injections 2005,2007
diagnosed w/PN Dr. Marvel 2010
3 nerve blocks
MRN,MRI
physical therapy
appointment w/ Dr. Hibner Sept.29,2010

[guggi]

Oh, Kate, let's talk about kids!

I know how empty your arms feel without some little one in them! Oh, I can feel your longing and your emptiness!

This past week was so rewarding once again. I had my 8 year old granddaughter here plus 2 - 3 neighbor kids and I fed them, played with them, and mostly, we went swimming all afternoon. We have a wonderful huge pool here with a climbing wall, 3 waterslides, 2 diving boards, fountains, a baby slide into the wading pool, and fake palm trees. What a week it has been! Yes, by evening I was half dead, but joyful. If it weren't for the pain, I could have given more. I could have been funny, entertaining, laughing, rolling around and being silly. Thank goodness, in the evening my husband took over.

You know, love sent out is never lost. It is the greatest gift one can give. Love ripples along and perpetuates itself forever and returns to us exponentially. One day, those babies will come to you and embrace you, and thank you for the love you have given them.

Life can be beautiful despite pain and trials.

Love, guggi
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PNE after vaginal hysterectomy in May 2005. After 3 successful nerve blocks and PNE decompression surgery with Dr. Hibner, Phoenix, September 24, 2007, approx. 50% improved. Eternally grateful to TIPNA and Dr. Hibner.

[guggi]

THANKS TO YOU ALL WHO HAVE CARED AND PICKED ME UP!
Love, guggi
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PNE after vaginal hysterectomy in May 2005. After 3 successful nerve blocks and PNE decompression surgery with Dr. Hibner, Phoenix, September 24, 2007, approx. 50% improved. Eternally grateful to TIPNA and Dr. Hibner.

[Kathleen]

Dear Guggi, I've been off the forum for a week or so, but tonight I was looking at it and I see your sad note. I feel very sad for you as well, and for anyone else fighting PN pain. You have a ton of friends on the forum, you are just that type of person, very caring, and always posting answers to help others out. It's true you have to take care of yourself. If that means you can't do as much (even if you want to) it would be better for you to say no to helping others so much. I have 10 grandchildren now, but the six younger ones I never felt I got to know them as well as my first four because I could never hold them because of my spinal fusion. So there are things in our lives that we have to give up because of pain, and it hurts us to do it. I feel very useless now, I really don't do anything, my husband does it all besides working part time. I feel very sad at times as well, some days I have a good cry and get it all out of me, I feel emotionally spent but then I read some Bible verses, and ask the Lord to help me, to give me His Strength and I get through the day. It is very hard, being alone so much is very hard, but I know the Lord has purpose for me in this pain, it certainly has drawn me closer to Him, and to thinking of the things of eternity, the things that will last, which are far more important then the things of earth. I thought you were doing so well, but I guess we all have our ups and downs, so take a good rest, and tell your family and friends I'm not able to do all that right now because it flares my pain up. I hope you can do that, I'll pray that you can.
love, Kathy
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PNE sufferer.