rather be dead than have this today
 

I would rather be dead than have this, sorry folks, but the whole thing sucks, and no one in my family gives a rats **** if i live or die, oh well, lying there, they want me to go to work coz hubby doesnt work. He said he doesnt care about my pain, he doesnt care if i have pain. And right now, i dont care either, coz i just want to take more and more drugs till i cant feel the pain in my body. Is that weird, or is that normal? the whole thing stinks, and i hate it, i hate the tiredness, i hate the pain and i hate not feeling normal anymore. Good luck to all of you who still feel ok. I will probably not see this posted, i guess i am feeling pretty bad today. i guess that is normal too, good and bad days, but i have to go back to work full time and put on the bright smile and yeah sure, all great, and yeah i am doing wonderful, and really i just want to scream and shout that this stinks and i hate it, and i hate my husband for not caring, and my daughters never ask me either ... so i was only diagnosed a few weeks ago and already no one cares a **** what happens, i hve to suck it up princess, put on the bright face... i dont want to.

Im glad you vented, it needs to go somewhere.

Family!

Well family is a structure. It has been a certain way for a long time.
Now you have a new situation.
Your family cannot accept it.

No wonder, if it is you that has been going to work and not your husband, you obviously to some degree are leant upon by all members of your family.

They need educating, but this is not easy.

Its like trying to explain colour to a blind man.
They may get it in time but it will be the way they see it not how you want them to see your pain.

Be strong.

Give this time, give them time to adjust to your new diagnosis.

You have my sympathy, which is currently what you need.

Use the drugs to control pain and not thoughts.

You are normal wanting and needing attention and love.

A meal time is the best time to talk to anyone.

If they will not listen then ask them to watch something about your condition or read something.

It will not make a difference tho until they see you, accepting the way things are and doing your absolute best to adjust.

Take care.

The ugly thing about this is that it usually doesn't show much physically, it's all internal, and nobody believes how much it hurts, or even how it hurts. It's not an organic type of pain where you have an injury, your pain peaks, then gradually gets better and goes away. My mother gave me some topical cream ARNICA that helps numb boo-boos. I put that on my right foot, and five minutes later my whole foot is stinging out of control. Mom thought it would 'numb' the pain, but all it did was penetrate and excite the nerves that are damaged. ***** I couldn't move fast enough to wash that crap off. I tell her my feet sting at night, and she asks if it was because of something I was doing or eating during the day. I said no, with this disease it's much worse at night. Must have something to do with the moon, or gravity or something. So, YOU CAN'T EXPECT A MERE MORTAL TO UNDERSTAND SUPERHUMAN PAIN. I was going to work on crutches before I got the edema (swelling) under control, but I was taking the handicapped lift up the stairs, and it got so bad, I requested to work from home. And that's what I'm doing now. I'm one of the lucky ones. But yeah, it really sucks, and what sucks worse is that there are no cures on the horizon. That REALLLY SUCKS-

I feel your pain. I havent even been diagnosed yet,.don't know if this permanent or a pinched nerve or what. But the way people have been treating me has been horrible. My dh actually called me lazy the other day. I about had a nervous break down. Last night I had to explain to him and my kids what is actually happening to me inside my body. Just because you do not see it doesnt mean it isnt happening. And Lord knows I dont want to live like this,.I would rather be doing more things. And even when you tell people if they havent gone through it themselves they cant even imagine.

I'm so sorry for your hurt and pain! I am praying for you today.

My deepest sympathies for what you are going through. I was also someone with absolutely no support behind me. I was able to vent on these boards and also to my GP. It may be worth looking into some counseling, meditation therapy, hypnosis , pain management etc.

Nobody should have to go through this alone.

As far as work is concerned, it's hard to concentrate on work when your in so much pain, but we all have to put bread on the table one way or another. You may consider asking your husband to get some paid work and if you can scaling back your hours?? I dont know if that's even possible.

If all else fails just vent and vent on the forum. Trust me I totally get you.
Yes it sucks big time!!

Things they don't tell you...
 

Hi Linda,

You're not alone. Though we -- all of us here -- may be separated by great distance, the internet has made it possible for us to be together for support.

There are a couple things "they" don't tell you (maybe because "they're" hoping they won't -- or don't -- always happen(?) I dunno. :Dunno:).

First, Depression is part of the package. It comes with any kind of chronic illness, and the two feed on each other in what has been well-documented as the "vicious cycle". Google: chronic illness depression vicious cycle

Second, the stages of grief. Chronic illness is a life-changing event that affects not only our bodies but our minds. Google: stages of grief chronic illness

Knowing about these things won't make them go away. Learning about them will help you recognize what you're feeling, understand why, and hopefully how to better cope with them. I believe knowledge is power because I have seen and experienced it in/on my own journey. Knowing and recognizing is more than half of the battle in coping, living with it, and moving forward. It is not the end; there is still great joy and wonder ahead.

Venting is fine and healthy. Anger, frustration, depression... are understandable and forgivable. All of this is human. Forgive yourself first.

Doc

You are not alone , people dont take anything they cant see as serious unless its something terminal like cancer . Nobody gives a ***** in my family either ,and actually provoke me by suggesting the opposite most of the time to beep me off with result now we rarely talk.

In the end we cant change people we can only change ourselves .

If you try options here maybe you will get lucky or at least improve so its more bearable , but your going to have change ,rather hoping for everything else too or you'll be in for a long wait.

m

My feet hurt so ******* bad today. And nothing is working. Had a bad night - always seems like I have a bad night but this was even worse. Told people to lay off me and they ignored it and kept going. I exploded and it made my feet even worse. People can't understand. In addition to that, I tell them to read about it, and they can't be bothered to do it for 10 minutes. People suck. ****** People are still animals. They're idiots.

My right foot feels like it's gonna explode so bad, I'm afraid to take my compression sock off. And the old lady is wearing me out about throwing vegetable pulp that just went through a juicer -- down the disposal. Wtf is wrong with people? Oh that's right - she's not in pain 24/7 like I am! I knew I'd figure it out. This tune just about sums it up. For your enjoyment. As much enjoyment as you can get anyway.

*moderator edit*

I have edema; but because of the PN cannot handle the added pain from the compression socks. Unfortunately, I have to take water pills daily to keep the swelling and water retention down.

The hardest part, for me thru all of this, was acceptance. Took quite some time; still struggle; but then realized the life I was passing on to those I loved was not good for them or myself. I needed to start caring more about others. I actually felt badly for my husband who could no longer enjoy the things we did together. His life has changed because of my illness as well. Really not the life any of us had planned....24/7 pain.


(Gerry)

Yeah, I get what you're saying, and you have to start caring about your spouse, or else he'll leave you. Fact of life. When I say 'old lady', I'm talking about my mother - I came down to Florida to help her because she was killing herself trying to take care of my stepdad, who has dementia. We finally got him into a home for people with the same problem (this week). I do care about my mother, that's why I'm down here, but as in any family, there are issues.
I'm alcoholic, and my real old man is about as low down the totem pole as you can get. Nothing but ***** and threats from the guy from the time I was old enough to look up. Dear old moms let that go on for 20 years until I got old enough to step in. I'm not blaming my father for me being an alcoholic, but all you have to do is watch Intervention, and every last one of them was abused. Not in the mood to hear her browbeat me when I'm in more pain than usual. It's got nothing to do with caring about others, because I do. Maybe I'll have to move out. Whatever. It'll change for her, but it ain't gonna change for me. I've accepted it. I'm just scared ******** that I'll starve because I can't make a living at some point.

While reading your post, I completely understand how you feel about acceptance. I am also going through the same process. This pain and spawning into other issues - lung problems and GI issues are just difficult to handle. When I started on this PN pain, I thought it was just one of those "passing discomforts" that with the right diagnosis and medicine, it will just go away. My husband is a very wonderful, loving and supportive man. I feel so sorry for my husband for he has to deal with the stress of living with someone like my condition. You are absolutely right, this is not the life we planned. What is even more frustrating is wanting to do more but you couldnt. We just have to do the best way we can and live one day at a time.

Brue,
 

Just thought it would give you something to think about....the compression socks. For my PN pain, they just caused additional pain.

The rest just is who I am.....The difficulty accepting this painful life and watching, not only my husband; but my grown children saddened. When I tried to pick up on their feelings; as well as husband (Have no fear of him leaving; if he did, it would be his choice; but while I can, would like to bring some joy into his life, as well as others in my family)

You are fortunate to have a mother who cares. She might be hoping you'll try to help yourself and unfortunately is not handling it to your liking. Does not sound like you were dealt the best of cards either. I myself, had one of my childen with a substance abuse problem. She would tell you she really had a good life growing up.This is not always because a child is abused. But....she picked herself up....it took a couple of rehabs and is now working with those with substance abuse problems. She is enjoying as well a close spiritual relationship with God.

I well know the pain does not help us deal with what is going on around us; but for me, it does help me if I can bring a little happiness to others. Don't get me wrong....I still have days that I am not the nicest person to be around.
Just not every day.

Take care and hope things improve for you.

(Gerry)

You too. Yeah, I have been able to control my edema, although yesterday it bubbled up on me. If I don't wear the compression socks, what little edema I have goes to my feet, and increases my pain big time. Now, it stays up at my sock line, and now that I wear shorter compression 'sport' socks, it doesn't ride up into my knee. It's about midway up my shin, and then I take them off to sleep, and put them back on before I start walking around and it goes back down to my feet. I take the water pills, and cymbalta too - apparently that's has diuretic properties.

Brue

Edema
 

FWIW, I had edema pretty bad in my feet & legs below the knee. The diuretics didn't do much to help. I found through trial & error that there is a connection to sugar, even though all tests for diabetes are negative. Cutting sugar out entirely, the edema is at least 75% improved within a few days. If I get into sugar, my feet blow up like hovercraft. Since figuring this out, I've been sugar free and able to get my shoes on again. I'm missing the sweets, but not the edema and increased pain.

Doc

Doc,
I am bad and do eat a lot of sweets. My edema started within a week of Cystocele surgery (about 3 years ago) Also had that awful 14 day antibiotic Levaquin. Stasis dermatatis began at the same time. This is all tied in to my Cystocele surgery) Unfortunately, the urologist didn't repair to the point that within two months of Cystocele surgery, the small bowel came down (Rectocele surgery). Rectocele back again. My edema is from feet to the top of my legs. Feet, as well as legs just started getting huge. Until the edema started, legs were of good proportion. The Furosemide does keep the swelling down.

Not sure sugar will help with this type of edema. But I probably should try. I don't each much anymore, except sweets. No appetie. Without the sweets...not sure ...it's like almost all I eat. Like an addiction. Food...eat very little.

I'm glad you have your edema under control. Sounds like you hit on what is aggravating your edema.

Gerry)

Me either -- just throwing it out there. If it can't hurt to try it, then it can't hurt to try it.

I'm learning my way through all the various sugar substitutes. I used to avoid them, but now it's them or nothing, and I'm finding some interesting differences. E.g., I like root beer, but there's a HUGE difference in sweetness. A&W seems to have many (3-4?) times the amount of aspertame as Mug (the only 2 diet RBs available locally -- can't find diet versions of Barq's, Dad's or Hires). A&W is so syrupy it leaves an aftertaste for hours, but I can drink Mug (figuratively) 'til the cows come home...

Doc (There used to be a Doc's Root Beer [NAYY], rebranded many decades ago as Dad's)

Hi
we sympathize greatly with those in pain, but need to also uphold the guidelines about vulgar or offensive language here. I am therefore requesting members please not post language that either the vBulletin filters automatically remove by **** or that attempt to circumvent those filters.

Here are the Guidelines which everyone does agree to when they register here as a member
thank you

Hey Brue,

I tried compression socks today and they seemed to help, but I did some research when I got home and found conflicting information about someone with neuropathy wearing them.
Did your neuro or podiatrist prescribe them for you?
Here is a warning from wikipedia:
Under no circumstance should those with advanced peripheral obstructive arterial disease, congestive heart failure, septic phlebitis, oozing dermatitis and advanced peripheral neuropathy be wearing compression stockings.

I was wondering how long you have worn them and how much you think they help you.
However, I am concerned and wonder if I should wear them at all.

The ones I tried were from a company called CEP and are gradient sport socks.
Thanks!

I've worn them for about four years now. I didn't have a neuropathy diagnosis until this year. I had severe edema in my legs, and the doctor thought it might be PAD - Peripheral Artery Disease, so he recommended the stockings. He called it the 'old people's ailment', because I was down in Florida and he saw a lot of old people as patients. I used to wear the knee-length ones - compression 20-30, and the thing with the socks is that the swelling stops at your sock line, and it was right under my knee, so it backed up into the knees and caused me to be almost completely immobile. After awhile, I got those gradient sport socks you're talking about, and that's what I wear now, and they're short, so the 'edema line' is about halfway up the shin, and doesn't bother my knee. If I DON'T wear the socks, the edema goes right down to the foot, and sits on top of it, and feels like someone took a hammer and hit me there. So I wear them pretty much all the time. It helps with the general pain, too. They work for me, big-time. Hope that answered your question. Discount Surgical has a delivery website with more compression socks than you can imagine.

http://www.discountsurgical.com/

Re: family
 

Remember the old saying, " you know who your true friends are when you are in trouble" It is true. My own daughter abandoned me completely. There are just some people who cannot handle anyones distress. Some day we all hurt, and that may be the only time they change their tune and have compassion. In the mean time, you have us right here on NT. I run back here all the time to talk, vent, get a grip on my life. Don't let the others bring you so low. Find some measure of peace, and contentment for just yourself. I refuse to be treated badly, there is no excuse for it. I care about you, and am glad you came to NT. ginnie

Hugs from a friend
 

I am so very sorry that you are going through such a hard time -- I turn to this support group when my pain and emotional distress are so much I can't feel like I can go on - and then there is someone out there who maybe I can help, and to be honest is in worse shape than I am. I've had this crap for over 12 years now and am always so very tired and drugged and bored because my life is so limited. I know I am depressed and am trying some new meds for that -- but also have the lack of support from family -- that is the hardest part of all. NO ONE understands - everyone is sick of it after all these years -- and my husband has his own issues and the stress of that just sends me off the roof in pain. My feet burn burn burn and the rest of my body does now too. When the stress is high it is impossible for me to control the pain -- but how do you eliminate stress in these days?? I do know that you can't give up and that the Lord loves us and will help us through the hardest of all days for sure. If I didn't have my faith I couldn't do this at all. Please remember that this is an up and down thing and this is a down for you and I -- two weeks ago I was in Boston on a trip! Now I can't even get it together to go to the store. The emotional part of it is the hardest part for me.
On a lighter note -- I used to live in Glen Waverly (Australia) I LOVED it there. I am back in the states now, but that is a great memory for me. Come here often and lean on all of us when you are struggling - sometimes we just need to vent!

Hi Linda
 

No, you don't have to suck it up. There has to be more help so you can have some quality of life back. Why can't your husband work? Right now, you need to take care of you first. PM me if ever you want. We will care for you right here on NT, and try to help. Have you tried physiatrist? They specialize in pain/ and whole body approach. I hope very much that you can get more help. ginnie:hug: