Need someone to talk to............

rubypearl · Newbie Alert Joined: 11 Dec 2005 Posts: 1

I've known about my Lupus for about 9 months now (it came on quite suddenly last spring) and am having great difficulty coming to terms with the pain level in my joints and tendonitis here & there, which my doctor says is also Lupus-related. It seems that every week I have a new place on my body that hurts. I'm a nurse, so it's not like I don't understand the whole process, but I don't feel like I can talk to many people about it at my job because I'm there to take care of the patients, not myself.
I don't want to constantly be complaining to my husband, family, etc.
Truth be told, most days I want to just sit down and cry, cry, cry. Which is not like me at all. I've had medical problems in the past, but finding out I have Lupus and trying to deal with the daily pain has really beaten me down. Sometimes, emotionally, I feel like I'm all alone on this planet.
But then, all of you on this web site must understand what I'm feeling?
Ruby

golfgirl · Not So Newbie Joined: 01 Aug 2005 Posts: 5 Location: Wa

Ruby,

I am sorry you are having a rough time right now. I am sure that we all have been where you are at some time or another. This is why this forum is so great, you can talk to other people who are in your same situation. Just know that you are not alone, and that we are all here to help and support.

Golfgirl

chal23 · Tadpole Joined: 10 Dec 2005 Posts: 17 Location: San Diego

Hi Ruby,

That's what we're here for - so you can vent, cry, smile, etc! I know my family is especially sick (he he) of listening to me talk about how tired I am, how much I ache, etc.. Coming here always makes me feel better, hope it does you too!

Chal
_________________
Chal

TracyDawn · Posted: Tue Dec 20, 2005 11:47 am Post subject:

Ruby, welcome! I hope you come to love it here and visit often. It's a great sounding board and also lots of UNDERSTANDING support. One of my only arguments with my dh these days is about how I'm feeling. Mainly because I don't want to tell him. We had yet another of these this past Sunday. He asked me how I was feeling and I said fine. He said I can tell you aren't fine and it went downhill from there. It's the same argument over and over because I HATE telling him this hurts or that hurts, or I'm nauseated or whatever the problem is that day. I started crying and finally YELLED dammit I hate this because I can NEVER tell him I had a great day. Sad

And I hate complaining.
His response was It isn't complaining if he asked me to begin with. And he DOES want to know because he cares and also because my memory is so shot he's my backup for my symptoms when I go to the dr LOL
Anyway, my point is sometimes it's not them that has a harder time asking it's us having a harder time telling. I gave him info to read (which took a trip to counseling for him to do) and he finally did. He now knows it's not going away and he will have to learn to deal with it, but some days he deals better than I do.
Anyway, I am glad you are here and will find lots of support, hugs and cyber shoulders to cry on. {{HUG}}

Saysusie · Posted: Wed Dec 21, 2005 7:11 am Post subject:

Hi Ruby; As you guessed and as you have seen, everyone here is very understanding, sympathetic and ready to listen any time that you need to talk. I can imagine how hard it is for you, being a nurse, having to deal with a chronic illness while caring for others. Even if there is no one in your workplace that you can talk to, you can ALWAYS come here and we will try to help you in any way that we can.
TracyDawn made a very good point when she said "sometimes it's not them that has a harder time asking it's us having a harder time telling". That is sooo true for many of us. We want so badly to be ok and to not have the aches, pains, nausea, memory loss, rashes, itches, ulcers, moon face, balding hair, cold hands and feet, debilitating fatigue, sun sensitivity.....(.well, you know, I could go on and on about all of the symptoms that we suffer from) that saying that we are fine is sometimes a mantra for us, or a wish or our way of believing that saying it might make it real. I think that, for our loved ones, that is another aspect of our having to deal with this disease that they need to be aware of. WE DO NOT WANT TO BE SICK!!!! Therefore, we hate describing how we feel almost as much as we hate feeling it!
Just know that here, on this forum, we truly understand and remember that you are not alone. We are here for you!
Please, join us often and whenever you feel a need.
I wish you the best Very Happy

Peace and Blessings
Saysusie

shanniefly · Posted: Wed Dec 21, 2005 9:36 am Post subject:

Welcome dear one...

Ruby, I totally agree that it just seems to keep coming up in different areas. I also agree that we feel like we are constantly complaining, but when people ask us how we feel, Shocked

FINE isn't a bad answer...

F=Feeling Lousy
I=In poor spirits
N=Not wanting to complain about it
E=Excited that you care

If you are having a good day spirit wise, you can just change the way you say FINE, and then...

I=In good spirits!!!

It is all about the delevery of the word Embarassed

You all can yell your family this...or make one of your own...they will understand, and you won't have to feel like you are complaining so much!!!

My boyfriend hates it, but understands, but my family and friends love it and some of them carry a card around to remember what it means...I of course love it because I came up with it!!!! Laughing

Take care, and keep your chin up...the more down you get about it, the more pain you feel!!! Very Happy

_________________
~*~Shannon~*~

"And in the end, it's not the years in your life that count. It's the life in your years."
-Abraham Lincoln

TracyDawn · Posted: Wed Dec 21, 2005 11:05 am Post subject:

Shannon that is awesome for a response. I think I'll type up a nice printout and hang it on my fridge. LOL Thanks.