Hello, this is my story of PN.

Just a little background first, my name is Debbie I am married and together we have 6 children, ages from 22 to 11.

My Neuropathy started in 1997, I started having pain in my right hip and leg. Went to the doctor and of course she ran tests and could not find anything wrong, so she sent me to a bone spec. well then they ran tests and all they could come up with is it might be fibermaligal, but they had never heard of it starting in the lower extremities, that was all they could think of, well then a few months later it went away.

Then in 1999 it came back, still only in the right hip and leg only this time worse. There was a constant ache, the pain was becoming unbearable, went to an NEW doc. started all over with the tests. after several months, she tells me I am a medical mystery, she has no idea what is wrong with me. { let me back up a min. at this time I have no medical insurance} This goes on for 2 years only now the pain has spread, now joining in is the lower back and the left leg and hip and lets not forget the feet. Still no insurance. Well there is more doc. in office so I ask to see another one, well he doesn't have a clue either, but he at least believes in helping me with the pain[ haha] I forgot to tell you the other doc doesn't believe in pain pills, now with new doc, I am taking 3 percocet a day. But better than all those anti-inflams, and muscle relaxers that did not do anything for me.

Well now it is 2004, I have not been able to work for 2 years now, my life has gone from being a wife, mother, and a woman. Well to this person who lives on her couch and writhers in pain 24-7. The life that I once had is GONE, VANISHED. Long is gone the woman who used to go fishing with her husband, camping with her family, having a GREAT garden, beautiful flowers everywhere outside, going to play bingo, and most of all go to church to give God his praise and worship he deserves from me. I can no longer ride a bike, or play badminton with my kids. I cannot even sleep with my husband any longer because of the pain when he moves.

We finally got medical insurance and off to the doc again I go. But now I have more recourses, I start with my pcp, who send me for more tests, all normal, then off to bone docs, all normal, off to physical therapy, BAD, BAD CHOICE, LEAVE THERE IN MORE PAIN, stop that, off to pain doc who gives me injections in the spine not really a good choice because I am AFRAID of needles, but hope they might help, WRONG, finally to a neurologist, he does an emg, then tells me what you have is VERY PAINFUL, well like I don't know that. Then he puts me on tritipatal, and ultram for pain.

After 3 weeks the skin starts to fall off my feet, and larder blood blisters appear all over, takes me off that, then tells me there is nothing more he can do for me and that’s the last I see of him.

Meanwhile, my pcp has no idea what neuropathy is or how to treat it, but gives me a scrip for percocet, 3x daily. Well I end up in ER from pain, and as soon as the Dr. finds out I have PN, she says all she can do for me is give me a prescription for more percocet only take 2x 4 daily and tell your Dr. that is what I need, and if he won't do that find another one. So I did.

Went through the yellow pages till I found a Dr, that not only treated the disease, but also the symptoms, finally I found one. God must have been guiding my hands that day. She was GREAT, she saved my life, because let me tell you I was at that point that I think we all get to that dying would be such relief. But I am a Christian woman and killing myself was not a option.

She started me on lots of vitamins, toppomax, and percocet [the correct amount] well I started on that and went back every 2 weeks, trying to get my meds to the point that worked for me. I was starting to sleep 3-5 hours a night compared to 1-2, I was now able to do some laundry, and once in a while cook. I was so happy I thought Thank-You God, now maybe I could start living again.

Well that was not going to be for long, they sold the clinic, and she was not offered a post. Which meant for me, no more life. Went to the other Dr. and I was right, they did not believe in pain pills, so here comes the unbearable pain again and the crying and the wanting to just die. For 4 months I had lived again, now I again had no life. I thought to my self, why Lord? why? This has got to be a mistake.

I felt so alone and lost, there was no-one for me to talk to, no-one that understood what I felt like. I was at what I thought was the end, I was no good to anyone, not my husband, certainly not my kids. What good was I doing living like this? I had no answer, there was no-one to talk to, because I have never told anyone the whole truth about PN. I didn't want everyone feeling sorry for me, I was afraid and alone. Then I found The Neuropathy Association and started reading the posts there, and found out I am not alone, and I am not crazy, I had just had what a thousand of people with PN has had to go through.

So now I have again found a new Dr. who is helping me, I am still in a lot of pain and have not gotten off the couch YET, but he is trying to give me back some of my life, I know that the pain will always be there to some degree, but maybe it will stop controlling my life, I also know that there are going to be limits to what I can and cannot do, but with God, my doctor and people to talk to it will get better.

For those of you who are asking no I have still not told my children mostly because, they are MY children and I do not want them to be afraid to go and live there lives. Because if they did know they would be over here watching me and trying to do what ever they could to make me better. AS A PARENT you can understand that we want our children to go and live their lives as we got to live ours, this is the best part of youth learning and growing, falling in love, growing up. I just mine to have that chance, the same one we all have already had.

There will be a day when I can not hide these things from them anymore but until then, I will keep it to myself and talk to those out there who haved to live with disease. Who knows by then God could have given some doctor the means in which to cure us all.

Until then, this is my story and thank-you for listening. And if anyone out there needs someone to talk to and to share with, I could always use another friend. Like I tell my children, You can never have to many friends, for that's how our lives are judged, by which the lives we touch and those who have touched ours.

GOD BLESS ALL OF YOU,

DEBBIE CAPLE
LAKEWOOD, WA.

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