Did You Ever Think?
 

That you'd be posted on the internet with individuals with issues similar to yourself? 5...10....15.....20 years ago...did it ever occur to you that you would be communicating with "strangers" who were suffering from chronic and painful conditions. At one time in "our" lives.....we never expected to be in this situation. I mean...looking at this little page on the internet....it is...maybe a dozen people....that share....encourage....support....and find solace, over maladies that have entered our bodies. Why me? Why you? Why?

Chronic Pain


Let me introduce myself to you,
I am pain.
Not just pain, but Chronic Pain.
Sometimes I am a hot searing pain,
other times I am a sharp shooting pain,
cutting through you like a knife.
And yet at other times I am like a root canal or toothache, that never goes away.
If left uncontrolled, I will rob you of your humor,
I will rob you of your friends and rob you of your dignity.
I will rob you of your job and make your family miserable.
I will take away from you everything that is dear to you
including your very soul.
You can not see me,
As I am invisible to the human eye.
Therefore one should not judge someone
who knows me on a constant daily basis,
for I do not ever go away.
I do not have any friends,
for if left alone,
I destroy them.
If you think you are safe from me,
Please think more than once.
For I can become a part of you,
as quickly as a snow flake falling from the sky;
as easily as a leaf falling from a tree
or raindrops falling from the sky.
No one wants me as a friend;
Because I Am The Enemy!
Many doctors fear me
for they don't or won't treat me!
I am treatable,
but on many times I am not seen
I hide and I lurk in somebody’s body,
and many deny I am a part of them;
in fear of being called insane.
Why are doctors afraid of me,
Are they afraid of me because of who I am, and what I can do?
or who my insurance company is?
or is it the Federal Government
in which they fear?

That was pretty deep Jak!
 

I can relate to that today... I'm feeling pretty bummed out today because of this stupid PN. It has really screwed up my life royally.

I never would have thought even five years ago that I would be on a Board sharing with people about chronic pain! I was a "Positive" person. I never dwelled on the negative. I thought that the more you thought about it and focused on it, the more it ate away at you. I avoided negative people in my life.

NO WHINING was my motto! It still is as much as I can tolerate it!

But here I am, whining and listening to whining. But not for the sake of whining, it's for the sake of understanding, for the sake of learning about what I can do to 'FIX' or at least TOLERATE what makes me want to whine.

Thank you for your deep thoughts and your sharing.

Hey, five years ago--
 

--I didn't know about any of this.

I had never heard of neuropathy, had only vague notions of Internet "boards", and certainly had never expected to be able to talk about anything/everything with people I'd never seen, even on other continents.

But, while this is not a journey I would have chosen to take prior to its origin, it had certainly had its compensations. I am so much more knowledgable now, have actually sort of developed a second vocation in health advocacy, and I have a larger extended family than anyone could have ever forseen.

Is that a reasonable trade-off for the pain, the panic, the depression, the exasperating doctor visits, the insurance fights? Maybe. Maybe not. But I know I am a very different person now than I was then (and not only in the 20 extra pounds of weight around the middle department).

Am I a better person? I'll leave that for my wife and son and anyone else to argue. But I am different. And there's no going back.

Hi Jack, Hi Seams HI Glen:

Well, since we are having a "why me" kind of party, I'd like to add my thoughts. Today is my son's 26th birthday. If you would have told me 5 years ago, that once my son walked out the door, he would never come home again, well I think I would have clocked you. Never in all my mind would that have occured to me.

But life throws crap at us, and we have to deal. Sometimes life throws more crap.

Lots of crap lately, hah!!!!

But we'll deal!!

We have each other and this forum. That's a good thing.

Melody

Hey Melody!
 

And we all have YOU, dear Melody! Lucky us....you are a ray of sunshine. You make me smile.

Shirley H.

Never knew neuropathy existed 3 years ago, I was lucky the dr. in the ER that night knew right away what was wrong with me, made the journey to some relief a bit sooner than most of you went through.
Changed me, boy I'll say, I'm slower, more methodical, in how I approach everything. Some days I just want to crumple into bed and be left alone, and yet other days I'll stop and think to myself, I feel really good right now, I just went ten minutes without pain!
Mel, today is my birthday too, darned gemini's and their "two heads". You are facing your life with humor and grace and like the rest of us just doing the best you can, pat yourself on the back, I would but I would be so terrified in the big city........I'll just send a little hug:hug:
Janna

Thanks. What a nice group of people!!!

Melody

Jack, yes we are strangers in some ways....
 

but fellows in another? Don't you think that is so...and, then the internet can be a good and useful tool to those who know how to use it well.

With pain, we all experience it differently...there are no 'formulaic' sets of words one can use....asides from IT HURTS A Danged LOT!

I don't think a soul here ever heard of neuropathy or that there were different KINDS until we 'got' our diagnoses [IF at all].. not even knowing how to spell it doesn't alter the fear of having 'IT'. Much less what causes IT or what to do about IT. It is hard to talk to others, friends, family, co-workers about life in 'general' when your own life is ruled by the pain and the trying to live with it. There are many here who try, try hard, and even if the whole pain thing leaves them broken and flat out...they manage to accomplish many things that bring joy to their life. With out those other joys or any joys, no matter how small, what is life?

Here you can talk about the pain, learn about how to manage it [as best possible] and try to get on with the rest of life.

That was a good poem.. It describes the insidiousness of pain well, but there is also that aspect of the SPIRIT and I am not talking about anything other than the human ability to OVERCOME and survive and cope in all it's manifestations.

Take a look at cancer boards, the MS, Parkinsons' and other boards here...They are my heroes for dealing with pain, pragmatically and face-on. I am one humble mere wimp by comparison! But, I am also proud to have learned from them and how to deal with the deck of cards I have...I just hope I play them well for one heck of a big jackpot at the end!

:hug: - yep, for YOU - j

Deep Thoughts
 

I'd never even heard of internet forums when I started my journey and quest. All I knew was that I hurt terribly and I wanted help. The computer was new to me and I struggled daily to find my way thru the various buttons, command, hardware names all searching for help. When I found this forum the first time I was so full of hope. Hope that I'd found a cure here. I was too naive to know there might not possibly be one for me. Heck, everything that had ever been wrong with me (lots) had been fixed in some way.

So it was with great expectations that I logged into this forum and naively asked something stupid like how do I fix this? I bought Vit. B-12, fish oil, Alpha lipoic acid all by the bottles. My medicine shelf was so full. My husband would tease me and say are you going to have some breakfast with your pills? I'd come back every day knowing that you all would have some new miracle cure for me. Nothing worked. I did improve some in the beginning or at least it seemed to, then it started advancing again.

Then I got the diagnosis of Sjogren's Syndrome and I remember asking Glenntaj about how Sjogren's affected the nervous system and asking him if we were able to stop the Sjogren's, would I be cured? His answer when it came back was the one that turned the light on in my head. I'll never forget that after reading it and researching the answer he gave me, I knew there was no cure for me.

But I continued to come here to try and help as many people as I could and to have the friendship of all this wonderful group of people. A lot of us have been together a long time. I feel as if I've made a group of friends I'd never have had the priviledge to know. If I were cured tomorrow, would I come back? You can bet money on that.:)

Billye