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Old 03-26-2010, 02:50 PM #11
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Default Cannot truly cope with this.

I'm still in a lot of denial even after 10 years of PN. For a example, I am planning a trip to Paris in May with my two grown daughters. Instead of focusing on finding wheelchair friendly hotels with accessible baths, I keep looking @ pretty apartments none of which would be suitable. Reality reared its head when my daughter reminded me that I that I must stay in a room with a wheel-in shower. Period. End of discussion.

I do not want to let PN have me but denial is so easy to fall into. I'd like to read the book mentioned by plgerrard. Maybe it will help me accept this nasty condition and move on.
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Old 03-26-2010, 03:54 PM #12
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Quote:
Originally Posted by cyclelops View Post
...My husband as nice as he is, is burning out....
Mine also. We were married young - I was 19 and he was 21. He probably would not have married me had he known what was to come...

He is kind and gentle, but I know he is sick of dealing with it. I feel like major baggage.

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Old 03-26-2010, 04:20 PM #13
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Quote:
Originally Posted by cyclelops View Post
I am tired of having PN, and some one saying, 'Oh my feet fall asleep too'.

I am tired of saying I have Sjogren's and some one saying they have dry eyes too.

I am tired of telling people I have autonomic neuropathy and having them say, "What?"
No kidding Cyclelops, WTF. When people I know complain about minor ailments, I want to slap them. I especially dislike people comparing their afflictions to mine. They really have no freaking idea. I also dislike it that people feel obligated to talk to me about my health. Come on, there is more to me than "my health" and I am sure that they do not find the conversation especially stimulating.

I also dislike having to try and explain why I am not capable of holding a job any longer. I am sure it is a bit strange when people see a 47YO woman with a mortgage, husband and no children not working. Many times people probably think that I am lazy. Though I am far from that. I started working for money when I was old enough to babysit, cut grass and run errands. I then worked all through HS and college. My parents could not really afford to send me to college, so my husband and I paid for my night school tuition for many years.

Boy, this has really turned into a rant.

Sorry about venting, guess i needed to...

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Old 03-26-2010, 05:17 PM #14
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Default Vent, Please - That's what we're here for

I realized I needed to "gracefully" retire from a 30-year career, after I screamed at someone to SHUT UP. I supervised subsidized housing properties, and when the residents were unhappy with site management, HUD policy, or life in general, they called me to complain. These were women who had never worked a day in their lives, and were required to comply with HUD policy or loose their subsidy. The sicker I got, the harder I found it to listen to their excuses and complaints.

I always made it a policy to let them "talk it all out" before I tried to respond. But, the whole time I was listening, all I kept thinking was they were more capable of holding down a job than I was. Yet, I kept putting in my 60 hours a week, just so their whiney little a@@es could live off my tax dollars.

I finally had it after an emergency hospitalization. I probably tried to return to work too quickly, or maybe I had finally just run out of patience, or maybe the meds made me cranky, or....

It really doesn't matter, because I found that I am finally relaxed and at peace. Friends used to ask me if the stress of the job contributed to the neuropathy. I always told them No. But, I have finally realized I was wrong.

So, who cares if "they" think you are lazy. You know better. Just tell them the pain feels like a sunburn rubbed with steel wool. They will never think you lazy again.
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Old 03-26-2010, 05:32 PM #15
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plgerrard, I am sorry to hear that you also had to "retire". It is tough. Stress probably has affected us all more than we know...

You are right about not caring what people think. I will have to think of the description you suggest, i.e., sunburn rubbed with steel wool. Now, that's a good one...

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Old 03-26-2010, 09:35 PM #16
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3 years for me now and gave up my business which netted me up to 25k for 3 days work running my own marketing seminar business for very large corporations but involved standing on my feet 14 hours per day for a very intense and stressful sales events. That stopped when shoes became my enemy. Just recently attended my mothers funeral on crutches and a bandaged leg with a flip flop on the other.Told them I fell down some stairs. That was a lie but better than turning up in shorts and sandals and trying to explain I have peripheral neuropathy to every single person there . you can see they are thinking "you look fine to me"
I love sailing so am about to purchase a yacht and sail around asia where I live. People say how can you do it when walking is tough?. well you dont walk much on a yacht. There is always a way to find something to do rather than lay in bed and let it wear you down mentally.

On a side note My neuropathy nearly went away about 12 months ago but came back with a vengeance, bugger!
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Old 03-27-2010, 03:39 AM #17
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Smile

I to had to give up a job I loved, I had worked at the same place for 10 years. I had something called a good work memory, I guess because it was my lively hood, if any one needed to know something they would come to me, I would remember something I had done when I first stated, we would do a job and I would say we have done this job before, everyone else would say we don't remember. I had spent the year before PN working out and losing over 25Kilos.
After giving up work I became depressed and bored, I really missed the work and my friends, so of course I over ate and because I could not exercise much I put most of it back on.
The cymbalta did work for me at the beginning but I feel that it is starting to lose it's effect now, I have spoken to my doctor about trying neurontin (it is cheaper here than lyrica) maybe taking cymbalta and neurontin together. If anyone has had success with these I would be interested to hear from you.
I guess we are all in the same boat, but it takes some time to realise that we are stuck with this and we have to make the most of it, do what we can when we can and trying to explain to someone something that no one has heard of is very difficult indeed, and when they say this hurts and that hurts just smile to yourself and say to yourself if you only knew.

Take care everyone,

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Old 03-27-2010, 06:14 AM #18
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Quote:
...and when they say this hurts and that hurts just smile to yourself and say to yourself if you only knew.
That's the right attitude.

Did you ever find your memory start to go? My screaming at someone was just the final straw. Another of the contributing factors to leaving my job was my memory. I had always had a memory that could recall events with near accuracy, but eventually it became noticable that my memory was shot.

A few of the people who worked for me realized this and tried to take advantage. They would quote me on things that I just knew I didn't say. Not because I actually remembered the event, but because it would have been out of character for me. I finally had to ask they send requests by email, so later my actual response was in writing. That solved the problem, but was just another adjustment everyone had to make to accommodate my failing health.

I tried the Cymbalta with Gabapentin for a couple of weeks, but went back to amitriptyline (Elavil) and Gabapentin. Cymbalta and amitriptyline are both antidepressants, but for some reason the Cymbalta made me much more tired. Your idea of combining meds is a good one. That is what finally worked for me. I'm not entirely pain free, but it is tolerable.
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Old 03-27-2010, 10:53 AM #19
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LOL, I texted my hubby yesterday and told him I had early Alzheimers....perhaps my brain is full of misbehaving lymphocytes....or unidentified antinuclear antibodies....or prions.

Maybe somethings are not meant to be remembered.

To ALL who need this.....help yourself. There are more where these came from.
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Old 03-27-2010, 12:06 PM #20
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Sorry Guys...this thread just brought me to tears. I can understand what each of you has to say & exactly how you feel. I'm there too. My PN started one day out of the clear blue & that was 8 yrs. ago this last august. It progressed over the yrs. & these last 24 months have been the icing on the cake. I no longer say.."How can it get any worse?".

It too has ruined my dreams. I'm a chocolatier, been making candy on & off for 26 yrs.. To make a long story short I finally after all these yrs. have my dream commercial kitchen & have re-opened my business. Problem is now...I can't stand up anymore. We spent 1000's of dollars getting this thing built & filled with all my dream pieces of equipment & it all just sits there with me looking at it & crying.

We have a handful of accts. & I can barely handle that, ex-hubby has been making most of the product. But he does not make things like I do. When my PN moved into my hands I knew for sure I was almost over. I hand roll all of my bon bons & truffles.I spent most of the last 2 yrs. in bed. I can work on product lines, answer the phone & such but not much more.

So far my PN has been untreatable in the way of pain meds. Nothing.... after trying over 30 medications plus a series of epidurals has worked. SO the pain knocks your socks off continuously. I use to have flair ups from eating the wrong foods from the food allergies I have & instead giving those foods up I just kept eating them & sometimes I feel like I'm just killing myself w/ this gluten thing I have going on.

We all know about seeing different doctors....I been there with that too. Next thing on the agenda to try & help me w/ this pain is a pain pump inserted under the skin.....kind of scared me. So...I went home from the doctors & told him.....ok I'll go cold turkey....will try the holistic living, vitamins, diet & exercise route for a few months & lets see what happens.

I got depressed because I use to have just a bad week or so that the PN was unbearable, but then that changed to me experiencing more days like that. It got me down to having only 5 decent days out of the month, now that too has changed & I'm down the whole month. Been like this 3 months now.

I feel in trouble, serious trouble, hubby is a disabled vet. My biggest fear....our house is not paid for by a long shot. If something happens to him, he has no life insurance, cannot get it because he is on narcotics for pain & PTSD. I have visions of seeing myself walking down a road pushing a grocery cart that has everything I own in it & my 2 little dogs tied to the cart w/ a rope.

SO thats my motivation to try harder to do something here. Living w/ this crap everyday combined with the fear of what will become of me scares me to death. And yes it true sometimes the loved ones around us just burn out from this constant pain we have & how it makes us behave. This is surely a terrible way to have to live everyday.
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