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Ursula Pegg

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Ursula Pegg

Please read Ursula’s poetry about CPS.

I am Ursula, 83 years old.  i had a hip replacement in 2004 on the right side, which i call my good side.  the left side is affected by thalamic pain syndrome, also referred to as dejerine roussy syndrome [ed.: also called Central Pain Syndrome].  even many neurologists are not familiar with the syndrome.  it is here to stay with me until i die and was acquired when i was 63, the after effects from a very mild thalamic stroke. all the pills i take only take the edge off the pain.  there is no known cure. it gets worse, as the years go by, and it also affects wider areas on the affected side.  the early focus of mine was the left axilla and the surrounding area, spreading on select areas down the arm and hand, and slowly creeping down the left side into the leg and down.

my neurologist gives me most of the pills i ask for.  i would have been lost through the years if it had not been for the cps alliance correspondence, from where i got most of my ideas of what works and what doesn’t.  i am also a “googler” and research the stuff i take.

in addition to the left hip, my left knee is bothering me quite severely. i hope I can relieve this without a knee replacement, which i would not consider at this time.

at the front is gabapentin, which i have slowly titrated to 3,900 mg per day.  it has no upper limit.

  • i take one lotrel 5/10 for my bp and some cinnamon in the a.m.
  • i take 1-0.5 mg alprasolam for sleep in the evening
  • i take 2 NORCOS a day – they do not offer much pain relief.
  • i take one baby aspirin daily.

i have been mostly housebound.  i read and write a lot.  i have written a lot of poetry.  above all, i have tried to put the suffering of cps into rhyme.

to come to an understanding of the often misdiagnosed syndrome, i have written poems about this suffering and the way it affects our lives.  if you ever have time and, of course, interest, you actually might enjoy the poems giving a broad understanding of what ails us.

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13 Comments

  1. URSULA PEGG says:

    thanks to Doug Sharp’s devotion to our cause, i find myself in beautiful company. Louise, our untiring intellectual, is a cutie and so are the others, whose photos appear. how can anyone, who suffers from continuous pain,
    look so pretty or even sexy like Becky Brandt? IF THERE IS ANYTHING GOOD ABOUT THE DREAD SYNDROME WE SUFFER FROM, IT IS THAT IT DOES NOT SHOW ON OUR FACE. IF IT FOUND FULL EXPRESSION IN THE FACE, WE WOULD SCARE PEOPLE AWAY FROM US. MY MOTTO IS TO KEEP ON TRYING TO FIND SOMETHING GOOD IN OUR DAILY LIFE: WE SUFFER FROM INVISIBLE PAIN, FOOL DOCTORS – NOT ON PURPOSE, OF COURSE, AND WE SUFFER TOGETHER – WE ARE UNITED. WE HAVE FOUND A NICHE, WHERE WE CAN POUR OUT OUR DEEPEST THOUGHTS ON HOW TO MANAGE BEST WHAT WE HAVE TO DEAL WITH EVERY DAY, THE DEMANDS WHICH ARE STILL MADE ON US. LET’S KEEP UP OUR HOPES. WE DON’T KNOW WHAT IS AROUND THE CORNER. IT MIGHT ACTUALLY BE SOMETHING GOOD.
    YOU ARE ALL IN MY THOUGHTS AND PRAYERS. URSULA

  2. Anonymous says:

    Hello Uschi. I visited your page this morning,what a good job you are doing in sharing your life and pain with others.My prayers for all sufferers……Rose

    • URSULA PEGG says:

      hello rose. i am so glad you were able to find me and the dozen poems i wrote about our pain and the way it effects our life. in a poem i can express freely what the never ending pain does to the sufferer, while it is impossible to do that in our correspondence with others. as long as we can think straight, we know it is not the right subject to dwell on in a letter exchange. otherwise i would have bored even the best of friends for over 22 years now with the dark companion that accompanies me on my daily routine. you know best that my understanding of problems others have is far reaching, that i still like to laugh and, above all, have remained a good listener.
      without doug sharp these poems might not have made it to the front. he became our very capable web master just in the nick of time. i am so grateful to him, especially when i consider that whatever he does, and all the others, who express their feelings here, is done in a renching pain phase most people have never even heard of.
      thank you for thinking of us.

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