Thank you so much to everyone for listening and writing, it has really helped me. Even if I don't find a therapist - hearing your stories and your comments works just as well - NO! BETTER!!! Because it makes me feel like I am not an alien any more. I have a place in society again, even if it isn't where I was before, I can manage two lives - my social life of old friends, and my private life of new friends "Chronies of Chronic Pain":

Sorry it took so long to respond. My kids brought home a couple of virus's and that knocked me out until today because my condition is autoimmune related. I felt run over by one of those big trucks that flatten out the road.

On the brighter side my husband and I have made gigantic strides in the past week or so. We have really began to talk; I have worked hard to appreciate him more and be very vocal and more aggresive and demonstrative (is this even a word?) about it, and he has worked hard to listen to me about my concerns about how he treats me and talks to me and the kids. It has worked so far, but I catch myself wanting to withdraw from him in anticipation of things going wrong. It is so hard to be cautious and open at the same time.

Susanne - your story really affected me. While my husband and I have only been together 16 years, we also have special needs children(that in itself really compounds problems inthe marriage at times) I felt like I was reading my own tale when I read what you wrote. My husband also has many of the same traits as your husband - he is very unhappy at work (looooong story; dream job turned into a nightmare and now can't get out), ignores things if he can't fix it (I call it ostrich head in the sand scenario - not very nice I know, but even he admits its true), frustration at my condition and not able help me (me being an independent type and not wanting and even resenting help doest help things either) and watching my body deteriorate from lack of exercise and all these nasty meds i'm on. I could go on - but you get the idea. I hope you can get some comfort from this website - I know I hate what has happened to me - but I am really happy to have found this site. Do your grown children help?, are they aware of the dynamics in your marriage? I feel so guilty about raising my children in a chronic pain/chonic illness household. I really fear the repercussions of that. I was from a severly neglected household as a child and suffered health problems because of that. Now I notice my children becoming "oversensitive" about thier health. I don't know how to balance.
You mentioned that your condition has been lifelong or since childhood, so how have your children adapted? did it impact them? I am sorry if i am to intrusive - this just really scares my and i ... i just can't help that i am screwing them up!


Donna - please keep coming back - feels good doesn't it...

Zorro - I just adore your strait forward talk!! Thanks

Hopeful - lucky you getting a great neuro! talk to you again i hope

Dr. Smith - your advice, links, EVERYTHING has helped so much..

and everyone else who have answered my other threads - youve kept me sane these past months

and thanks to all the lurkers...............it a great site!

I have CMT, a hereditary neuropathy which in my case only caused me to be very uncoordinated, slow, and clumsy as a child. I had very high arches, and the awkward high stepping gait and tendency to walk on the outside of my feet, characteristic of the condition. My half-sister wore leg braces from childhood for what I believe is the same condition, but I have no access to information from them since our father was married to her mother while my mother was married to another man. Can you say dysfunctional? I took a lot of abuse because of my awkwardness, a lot of it from family, but school was no treat. Being nearly 6'2" didn't help.

Numbness started in my feet about 12 years ago. I was afraid that it was a sign of diabetes, although I have neither history nor symptoms, and didn't mention it to the doctor until it had progressed to a complete loss of sensation past my ankles. It is past my knees now. Glucose tolerance is normal. I blamed the pains in my legs on varicose veins. I do not like doctors and I prefer to ignore symptoms until they go away or I m sure they will show up on an objective test. Pathological fear of appearing to be a hypochondriac like my mother who used her health to try and control everyone.

Four years go I suddenly could not lift a plate at dinner. Diagnosis was carpal tunnel in both hands, they should have suspected something since it was bi-lateral but didn't. Three years ago I developed a severe staph infection in my foot from an infected callous I couldn't feel. The podiatrist recognized severe neuropathy and said he wouldn't see me again without a full neurological work-up. Neurologist diagnosed probable CMT, sent me on to Johns Hopkins to be sure, same result. I take 1800 mg. Gabapentin and oxycodone as needed.
My balance is poor, I walk with a cane, I tire easily, and I hate stairs. And it gets slowly worse. Five years ago I had few of these symptoms, so my children suffered minimal impact from my health. My biggest fear is which of them it will strike since it is hereditary.

My daughter, the eldest, has always been a big help, but in the past few years she is quite properly wrapped up in her own life. My sons help when asked, but don't volunteer. It is, I am afraid, the nature of boys. My eldest son is in China, he is the most helpful when home. The youngest is very empathic and aware, but is small and weak, so while willing.... Our two youngest were adopted as infants, but not as special needs, so we did not expect severe learning disabilities and orthopedic problems. We spend a lot of time at the local children's hospital.

My older children have some idea of the stresses in our lives, but not entirely. I do not feel that they should be burdened or worried. We are dependent on each other and have to work on this ourselves. Time alone together is most important. Do you get enough of that?

Do not worry too much about how you are affecting your children. No one's situation is perfect, and you can do everything right and still have regrets if you are honest. Please feel free to ask me anything at all if it will help. You are dealing with more health problems than I am.

I can't believe I came on today and this discussion was happening. I am home sick today. When I get ill it seems to be so much worse then before. I always have been prone to getting ill now I know why. The doctors say my neuropathy is auto immune even though doesn't show in blood work. I think they are correct. No other cause can be found. They have run every test possible.
I have a question for those of you who have auto immune. If you get a virus or bacterial infecction does it seem to be a lot worse then before you had neuropathy? I am on my second round of antibiotics and still having trouble. I've missed 4 1/2 days from work in the last two weeks. (Worried about that because my neuro is trying to get IVIG for me and I will need time for that). It's a wonderful life!!!
All kidding a side I do feel it is wonderful. Although sometimes this really gets me down. Blaine and Suzanne, I have been very concerned about what my childern must feel about me through all of this. I grew up in a house with a mother who was a hypochondriac (spelled wrong). I remember myself and my siblings being so sick of it as we got older. If you had a cold, hers was worse etc. We use to laugh about it. I am scared that is how my kids feel about me. I feel bad everytime I bring up my illness. I can't help myself recently. I am so afraid that I am turning into my mother. Who by the way turned into a wonderful woman, just has no coping abilities.
My children are all grown. My oldest daughter told me a few years ago they don't think I am weak. She said she thinks I am the strongest person she knows still getting up and going to work everyday with this. I wish I could believe it. That was also said before I started to talk a lot about it to her. Now she seems distant when I bring it up. My youngest and I had a conversation. She said it scares them is many ways, what will happen to me, is it genetic, etc. Maybe I should stop talking or complaining to them about it. Whatever thoughts everyone has will be appreciated.
hopeful

This is different for me as my mother was a nurse and ignored ANY physical problems I had, not that I was ever that ill thankfully. But it made me that sort of person that ignored a lot of my own symtomology for the first part of my life, then when this sitution occured snd no one could find what the problem was for a year - i am now a Super -Scrutinizer of every little nuance of my bodys reactions and behaviors (for lack of a better word). I am constantly analyzing my body, worrrying if it is a new symtom arriving, like recently high blood pressure. I don't think that is an aspect of my condition - but a reflection of my chronic pain and duress of life. But any time somthing does come up, or when I do go see my neuro, whiich is a full 3 hrs away, it impacts the kids, and like you, I do worry.

Like this weekend ... I was sick over thanksgiving so was not in care mode for the kids. When I came out of my fog on fri nite, my 5 yro said she has had bump on her head so I check her - she has A TICK!!! Now I don't know if any of you have looked at my other blogs - but one of my eatly diagnosis was Lyme. I had to be hospitilised to have a PIC line inserted, another attemt as an outpatient failed because I have VERY small, resisting veins and arterys. An extremely aggressive antbiotic was injected daily, I had problems with the PIC and was in extreme misery as this was in the early stages of my condition nothing worked. My youngest was then 2 1/2. Let me tell you she is like my 13 yro, very gifted, with absolute recall, and perfect memory. When she learned she had a tick she screamed for 20 minutes that it was not a tick - it was just a bump. I stayed very calm, tried to talk to her soothing, and reassuring, but she just stayed in denial that she had anything wrong. After about 15 minutes, I showed her the tick in a mrror, she still denied it, stating it was apeice of wood sticking out of the bump. Finally after 10 more minutes passing she calmed down enough that I was able to talk with her and learn that she was afraid because a tick in her skin would mean she would get sick. SHE WAS HYSTERICAL. And she was not even 3 when I went throuigh that! SO now how do I compensate for that? I mean How do I preidict that sort of reaction. we got through that just fine, i talked with her along time about Lyme, and ticks, and the new way they handle Lyme, and all that, even though it confuses the H*&$EL)*^&&*#L out of me, I just did my best to reassure that she is not going to get sick. She had better not or and gonna shove my fist down the throat of the emergency room dr who said that there is no Lyme in California and laughed us out of the hospital fri night. I wish dr's and insurance company could figure reality and agree for once.

sorry for that rant - dont know how i got there - gonna post this and get back to ya'll later

Thank you Susanne for what you wrote. I am glad your children were not impacted when they were younger.

This is very hard to write, but I am speaking from experience both with my mother, who was a chronic complainer whose three daughters were completely estranged from her because of the endless drama, and as a mother of five with a deteriorating chronic pain condition: find someone else to talk to. Write down the worst parts of your day in a journal, pour out your heart and desire to be completely understood in writing and try to keep your health out of the majority of your conversations with your family. Fight to preserve some normalcy in your relationships with your children and husbands.

Hopeful, the scenario you describe, where your daughter tunes you out, is very real. We certainly did it with my mother. I don't think it matters to the children if the ailments are real or imaginary, they don't want to hear it. We have a strong need to be understood, and it is natural to seek it from those nearest to us, but it puts too great a stress on those relationships. find a support group or buy a journal, come to this site often. Spill it here, and face your family as a woman with more to her than her illness. I know that it is hard when your body is screaming at you every moment, but it is worthwhile.

What a courageous person you are to say that

Unfortunately or fortunately, people like being with people like themselves, its been that way since the beginning of time, you only have to look at religion or race , sport , work, social class etc , we all tend to be drawn into or away from certain groups.

now zoom in and consider sick or disabled people...unless your a nurse or a charity its most probable that most people would rather avoid close extended contact with the chronically ill. after all its a huge downer isnt it?

the sicker we are the less chance we have of being accepted so do the best to suck it up and as Susanne says 'spill it here' because we are like minded

QUOTE=Susanne C.;828997]This is very hard to write, but I am speaking from experience both with my mother, who was a chronic complainer whose three daughters were completely estranged from her because of the endless drama, and as a mother of five with a deteriorating chronic pain condition: find someone else to talk to. Write down the worst parts of your day in a journal, pour out your heart and desire to be completely understood in writing and try to keep your health out of the majority of your conversations with your family. Fight to preserve some normalcy in your relationships with your children and husbands.

Hopeful, the scenario you describe, where your daughter tunes you out, is very real. We certainly did it with my mother. I don't think it matters to the children if the ailments are real or imaginary, they don't want to hear it. We have a strong need to be understood, and it is natural to seek it from those nearest to us, but it puts too great a stress on those relationships. find a support group or buy a journal, come to this site often. Spill it here, and face your family as a woman with more to her than her illness. I know that it is hard when your body is screaming at you every moment, but it is worthwhile.[/QUOTE]

Hi Susanne, I think that is good advice. I am going to give it a try. I think they are also not use to me not being able to cope. They grew up with me being in charge. I was the one that ran the roost (as my mom would say) they are not use to seeing me not be able to be the person I was. As I write I think it just dawned on me that I need to give in and find a new me. Should we do that? I still won't give into the fact that this is here to stay. Maybe I need to face this and find the new me. I just don't want to give up the old me. I liked her. I was so active and healthy. Managed to work full time, get my undergrad and then my masters. The only part I think I know was good for me with this disease is that it forced me to slow down. It also gave me a different perspective on my husband. We are so much closer now, still have our moments, but nothing like before. I just realized the marriage part of this has made my children much happier. They are with us all the time even though they are grown. I guess there are somethings to be thankful with neuropathy?
The reason why I try not to come here and talk about how bad or sad I am is because, I don't want to bring anyone else down. All of you have enough of your own stuff happening.
Again, thanks Susanne, I realize I went off topic but I am going to try your advice. I am sure it won't be easy because neuropathy is such a huge part of me. Sometimes I feel like it is me. Not good.
Hopeful

HOPEFUL I LOVE YOU AND YOU ARE WONDERFUL

yes i am shouting that at you

You don't bring me down when write in about your pain, your make me human! BY admiting and exposing yourself in this manner, you allow me to be vulnrable as well. I could not do this if others did not reveal themselves as well. Please dont ever feel like oooops i shouldn't tell you how to feel..... Please don't think I get sick of hearing from you or judge or condem because you have low feelings. I have them to. I have come from a mother who did not allow for ANY emotions what so ever - other than her anger! So I can come here now and share my depression over my condition for the first time - i need to know that you feel like I do - I feel bad sharing my pain as well. It is very hard for me to share my pain with others. Dumping on others was never allowed in my household when I was a child. It is allowed now! And it is neccesary! I am happy to share the pain that you struggle with sharing the pain!

I also love the part about how you say you are the neuropathy - oh yah, been ther. done that. I have a good friend who shares this wonder with me as well. As I have beeen advised on this site work on some of your relationships to aviod that, but ya, sometimes you are just gonna be your condition - especially on bad days, but thats why we can come to this site. Thanks to all the people who have refined and maintained this site - because it has really saved me this past month.

Susanne - I really love your advice. I have had to really become a different person so I don't inflict my angst, pain, frustration, etc, onto my family to much. I modify my activity levels so that I don't get into too high of a pain threshold. It kills my kids and husband to see me in ANY pain what so ever. So from active go getter I become a sit and do nothing. I often get too frustrated watching them do stuff, so I have to get up and leave the location they are in for a while. That hurts me emotionally, but I find I get snappy and short because I am frustrated that I cannot participate in family projects, acivities and chores. They understand and have gotten used to it as well and would rather I sit off in the distance and read a little while, while they do things so I can get my emotions under control again. But it is so hard for someone who grew up independent (forced upon) and self-sufficient, to sit back and have everyone do everything for her! It hurts too that my kids and husband have to do so much more work because I can't maintain my fair share 3/4 of the year.

But doing it this way keeps me from being in too much pain (along with all my icky meds!) and still been an emotional and vocal part of thier lives in a positve way.

I was very afraid of coming on too strong in that post, I am relieved that it was taken the way I meant it!

If I understand correctly, both Blaine and hopeful have autoimmune issues. From what little I know that means that you have many more complications, but also more chance of treatment than hereditary neuropathy.

For me, proper pain relief and pacing are the key to a more normal looking life. If I take my pain meds I can sit on the bleachers through my son's basketball game, kneel for a bit at Mass, or sit at the sewing machine for a little while. I get exhausted, and it still hurts, but I can do it. I am a lot easier to live with.

At my age (50) I am not worried about eventual dependency, frankly that is the least of my problems. If it helps me get around, keep house, do some, ( not all) of the things they expect from mommy, and not be a pain in the neck to live with, good enough. I won't be quite the super-nana I expected to be when grandson #1 arrives in the spring, but I can still sew and knit a little. I don't make as many cookies or put up as many decorations. "good enough" and "cleaner than it was" are my mantras.

I keep a health journal, writing down what I ate, if I went for a walk or did some simple yoga stretches, but most of all writing down how I feel. It really seems to help keep me from whining.

You do have to work to find a new normal. It isn't very different from adjusting to other changes in life, growing older, kids growing up, etc. And you are still you! Being able and active isn't all you are. Hopefully you will regain some of that with proper treatment, but don't define yourself by how much you are able to get done. That is a losing proposition as we age, even without severe health issues. Work to stay sweet and pleasant, cut yourself some slack, and your family will never mind having to help. But don't expect them to be mind readers. That breeds resentment on both sides, and again I am speaking from experience. If you are anything like me they are used to having you do everything and they have no idea what is needed or involved in running a house.

Get out of my head!!!

Doc