Oh JC, I can totally get what your feeling. My feeling better is like a 4-5 on the pain scale instead of a 7! Its seems that we may be twins because I also like to feel like I brighten a room, instead of dragging my dark clouds and doom in with me!

I'm pretty sure you know my pattern a) brief, nondescript post sharing my pain and/sorrows, then I disappear for a couple of days before I drag others down with me:-(

Don't do what I do, at least log on and read the replies to your post. I feel so much love, and get so much support when I really and truly need it.......so come back quickly for your share of that love and support too!


You are so loved here.....I for one would do anything within my power to help you through those tough times. That's how much I care......please don't shut us out when you need us the most!

With much love and many hugs!
Deb

I sent you a pm in regard to this, but I also want to say that you know your pain and you know what your better is, so don't let any one's misinterpretations or lack of understanding throw you for a loop.

Know your pain and know your self, then forgive others who don't. It is not worth the emotional upset that is taking more from your life than necessary.

Love,
Sis

P.S. Sharing earnestly like this post helps others understand you better and know what you are going through. This makes for less misunderstandings.

jc...
don't ever think you need to apologize for not feeling up to posting. We're just glad you're here.
I'm sorry prednisone was such a failure for you. I've been on prednisone for 17 years, at high doses and low (i'm on 5mg/day now). I know how much it can mess with your mind and spirit. I never had depression until I started taking it.

I think sometimes when we get better (or less sucky), it just means you're blown away when it goes away and you're back to crappy. Sometimes it just doesn't seem worth it.

But you have to hold on to how you feel when you're "less sucky" to remember it when you're really feeling crappy. It's the hope that you'll someday feel better that keeps you from lopping off your head.

Hang in there and stay with us- it can only make you feel a little bit better, if only to know that we're there for you!

(((hugs)))
Sandy

I completely understand where you are coming from. I am asked all the time by family how I am doing. And they all think that since I got the pain pump, I am magically cured. But Im not. My mom even said a prayer at supper on night thanking God for making me better. I got offended and almost left the table. I had to explain to her that I am not better, nor will I EVER be better. I have lifelong illnesses that are not going to magically disappear. I explained that the pump only took away some of the pain. She got offended of course because she just doesn't understand. And she is supposed to be a CPer like us.

I haven't had a good day in months. And so many times I just want to give up. But if it wasn't for my dad, I wouldn't keep pushing. That's why I am looking at possibly going inpatient for physical therapy so I can TRY to regain some of my independence in the hopes of living on my own again.

Most of the time I just read on here. I post when my hands let me, and I chat with those that I am close with. I do the morning posts and try to be as positive as I can, when I am really falling apart at the seams, and that is the only thing positive I can say all day. So I know how you are doing and how "better" is having a day where you not crying in pain. And better means you can stand long enough to wash the dishes after dinner, or take a shower.

I get it and you, from the looks of the responses, are not alone my friend.

Gentle hugs,

Jenna

You know, I'm on my 19th year of pain. For the first few years, I refused to be a part of a support group because I consistently rejected the idea that I would be in "chronic" pain. I fought it like a crazy person. If I had known that I'd still be in pain 19 years later, I would have ended it.

But what I didn't know is how much better my life would become in so many other ways.

And now, the pain is worse again but I still refuse to live like this for the rest of my life. I accept I am in chronic pain.... for today.
I'm still fighting like the devil to live a healthy life.

And I'll do that till I drop. Because it's that determination to heal that transforms my life into more and more beauty.

Never give up.
hugs,
Ama

Thanks again all...don't know what I'd do without you.

Just want to clarify...I wasn't upset with the person who misinterpreted " better".. it just SLAMMED home to me how
Not great better is.
I got great results from prednisone..it keeps my hands and feet
Able to type and walk...

I know if I hadn't found this group in January...
There's no doubt to me I wouldn't still be alive.
I'm one of the very fortunate with a loving, supportive family..
....and they have NO IDEA, for all their caring and compassion..
What living with this feels like.

Sincere thanks, friends,
Luv n hugs...jc

even though the steroid is clearly necessary, i don't know if you are aware that depression and anger are very common side effects of the treatment.

like all drugs we use them when the side effects are outweighed by the benefits, and i'm in no way suggesting that you change or quit treatment. i just wanted you to know a little of your sensitivity and despair may not just be your own reaction in total... it may have a little to do with the prednisone.

i offer this only as a "go a little easy on yourself, babe." and nothing more. self blame, doubt and that little voice telling you not to post things like this... eh toss it. we all have to let it out somewhere and this among the most constructive outlets you could choose.

look at all the love you got!!

keep on keepin' on jan.

Thanks..brokenyolk ( yolkyjen..:-) ..

I know...prednisone is a double-edged sword..
Am taking plaquenil now ( yuck..so nauseating..so..ad phenagren..oh, yay..!.. tired and nauseated..:-) :-) :-) ..
Anyway....with hooes that the plaquenil will eventually make the prednisone not necessary..

Prednisone is pretty risky for me, anyway, for other reasons....but, is part of my " quality over quantity" of life plan.

Sorry if all this is TMI, folks..
I'm trying to learn how to not be cryptic....:-)

Hugs..jc

It's too bad that "better" can't be "permanent". Time just drags when you need it to be fleeting.

Hang in there jc. Gentlest of hugs.

I don't post much either about pain and crap but I deal and have it and I read the posts here in this group and I am always nodding my head and saying yep that's me, yep I so understand.
And so thanks for posting your post because it is the same for me. "Better" today just means that there maybe an improvement to how I was feeling yesterday.
I think people just don't like to hear about sickness, disease, pain and whatnot, And as soon as you say that you feel better it's a relief to them, Like Phew, So glad that you are better.
I think it helps to remove any guilt they may be having for feeling ok or for not offering any help. Or they feel they are off the hook. What I am trying to say is that when we are not feeling great, others maybe worrying about how it may effect them in some way.
They get excited if you say that you feel better. But it may not be for us that they are happy for but a relief for them because of their own reasons.
Just my thoughts on it.

When I say people I mean the well , healthy people. Those who have no clue .

There's a lot of wisdom in what you wrote, Naturegirl. I never thought of it that way, but I see it may be exactly right. I guess it can be a way for us to let go of our own anger around people's reactions to our problem.

I hope you keep posting your thoughts.

hope you feel better today, Jan.
hugs,
AMa

tmi my bfa.