*headdesk*

I am kind of just trying to deal with this whole... connective tissue disorder thing that I've been handed. I think, like... for many similar situations, I would see a second opinion, or really be thinking that my prognosis is likely in the group of the more positive outlooks, or... a lot of things.

I'm generally pretty positive, but also in a very realistic way. It never has done me any good to pretend things are something other than they actually are.
Given the progression of my symptoms to now, the opinions of my GP and rheumatologist, other health professionals, people with similar personal experience, and my gut instinct, pretty much- eh... the diagnosis is really just confirmation of some stuff I already know, but like... introduction to "yeah, stuff isn't great, you knew that, but it's official, yeah it's progressing, it'll probably get worse. so YAY!"

So now I'm pissed off.
I'm having a lot of anger.

like a LOT.
My health has deteriorated in a crazy way the past several months and our first real shot at a pretty standard treatment [typical lupus/RA treatment] was edging on catastrophic failure. The pain symptoms as well as fatigue, inflammation... well, all kinds of stuff, are just now all in an uproar.

I'm bummed out, I'm stressed. i feel like I can't predict anything, even what direction my symptoms are going.

Im just randomly unpredictably pissed OFF. I'm tyring to just deal with it with a hefty dose of humor. It's helping.

I have a past history of impulsive anger and I had worked very hard, actively put a lot of effort into really examining my responses and actions regarding that kind of behavior.

I'm upset that I'm experiencing this kind of thing, and worried about my future.
I'm scared too, because I' feel like I've been struggling for so long- really like almost a decade and a half at this point- with SO MUCH STUFF, constantly working to just get on a basic functional level. This is one more thing and I'm just running out of Try Again Fuel.

I don't feel crazy or unstable really. I think that is a risk, and I've expressed that.

But I feel ok in terms of mental stability, just really stressed and angry.

But I feel, I think, a full gammit of reasonable emotions besides that.

I just... I'm running out of the I WANT TO TRY.
I'm going to be 32 in a few months.
And like.. if I don't see any kind of improvement or hope of improvement, I'm kind of worried as to what my brain is going to make of that?

And not's not any kind of dramatic, or even desperate statement.
That's just like... I've put serious effort into improving my life... for HALF OF MY LIFE, been giving repeated set backs and seriously attempted to overcome them- goals that have been several years long, and often acheived them.

Some of these goals have had very little immediate results and I've actually gone through a lot of freakin' heartache over them, but I have worked hard for me.

Not that like, life sucks, but I put a lot of effort into stuff.

In the past several months, my life has completely changed.
If i see no evidence that it can change back, or change somewhat to something I can deal with...

I don't really know what my brain will do with that information.
And that is just a fact.

Any input on coping with this crap, or how to process this whole "life is crap and I I'm super angry and don't like being angry" thing... or anything I've said... thing...

would be great, frankly.

I'm experiencing a lot of this logically.
I'm not like a totally emotionaly hysterical wreck, that is to say.

Would this be better addressed somewhere else?

No one relates to any of this, really?
Wow I must be completely bugnuts.

[gayleggg]

I watched my mother suffer from rheumatiod arthritis that hit her at a fairly young age. Never once did she complain and I know it was painful for her. If she had any anger about it she hid it from us all. But I tend to think she just accepted it as part of her life. She never let it hold her back. She continued working with swollen knees and hands that she could barely type with.

I don't know if this is really relative or not to your experience but you've got to find a way to come to peace with this diagnosis and what it entails. Therapy or journaling might help. Your anger will only make your body sicker. It takes up all the energy you need to deal with you current illness. I can understand your being angry, but you have to learn to let it go.

I really am sorry you are having to deal with at such a young age. At least I was 49 when diagnosed with breast cancer. I was silly enough to believe that the worst of it would be losing my hair. I was wrong. And I hate to hear when anyone else has to go through it. My husband was the one that was angry. He would just keep saying "why you" I finally answered him back with "why not me".

I know I'm rambling, sorry about that. I just feel your anger so strongly and would like to say something really wise, but I don't have wise words. I would suggest if you are not in therapy that you find one that works specifically with anger.

I wish you the best and hope you find your way to peace.

Originally Posted by JosieTheGirl

No one relates to any of this, really?
Wow I must be completely bugnuts.

Welcome to the world of the internal loner? I can relate to the situation if not the specifics. I definitely sympathize with your pain if that means anything. And admire your patience and grace.

[Perna]

Sounds like new dramatic change which will take its own time to grieve, etc. When you are 42 you'll get something else, equally obnoxious to deal with

I have a good friend who is mid- to late-40s and quadriplegic from having decided to dive off a bridge when he was 18, a bridge he'd dived off many times before only never before during low tide? Oops. So he's been dealing with stuff since then, it did turn his life around for the better actually, he was not on a good "grown up" path, all his many brothers being druggies, etc. and dying therefrom.

Lots of interesting conversation with/about him and how he coped at the time (he was married and his wife left him as a result, there's true love and support for you?) and his frustrations presently. He's literally wholly helpless and needs his last, unreliable brother to put him in/lift him out of bed each day and a woman who comes in to clean him and help with his care. I cannot imagine.

Can you may work to deal with your anger/fear/"mess" by talking to/counselling others having problems similar to yours? I know when I talk to other people, don't think so much about my predicaments, it is a little easier for me for some of the time. There's energy and ideas we can get from others that helps me. People who have accepted whatever I'm going through or something I think of as more difficult give me courage and a better feeling of support/backbone? I'm competitive and figure if they did it I probably can do it too.

Originally Posted by gayleggg

She never let it hold her back. She continued working with swollen knees and hands that she could barely type with.

I don't know if this is really relative or not to your experience but you've got to find a way to come to peace with this diagnosis and what it entails. Therapy or journaling might help. Your anger will only make your body sicker. It takes up all the energy you need to deal with you current illness.

I know this. I know this is a truth, though it does help to have other people tell me, even if I know. A lot of things are like that, I find.

It's hard sometimes to bridge the gap between knowing something and being able to do something about it. Particularly with icky feelings. [BOO ICKY FEELINGS!!!]

I'm just not really sure how to go about it. I know that eventually I'll have this kind of tranquil zen-like "ok-ness" [ha] with all the stuff going on. I have that kind of thing about a lot of other things I'm dealing with already.

Like a long term card game of strategy.
You get dealt what you think might be a shoddy hand and get all pissy and belligerent at first.

However you can only see your cards, you don't know what anyone else is holding and there's a huge draw pile. If you think on it and play skillfully enough you can probably come out ahead or at least break even at some point.

He would just keep saying "why you" I finally answered him back with "why not me".

Yeah... I get that, but I get the "why not me" thing. I don't really feel sorry for myself. I don't especially feel angry in that... like I feel like I've been cheated, exactly. I just feel this general anger that I keep trying and just when I think I am close to getting things down, some other part of my reality goes to hell. It's a lot to take on over and over and over.

I just feel your anger so strongly and would like to say something really wise, but I don't have wise words. I would suggest if you are not in therapy that you find one that works specifically with anger.

You've been really helpful and I appreciate it.
It's just very difficult right now. I don't know how to talk to people about any of this. I feel like there is some kind of supposed ettiquette. I dont know what that is. And a lot of people aren't understanding what I'm feeling or experiencing even if I try to explain- because they already hav in their heads an idea of what I'm going through, and don't wish to deviate from that chosen perception... for some reason...

Actually, before I came back to look at this thread, I contacted a therapist I was seeing for a while, a couple years ago. Basically the only one in recent memory I actually liked. So, yeah I agree on the therapy thing.

Originally Posted by George H.

Welcome to the world of the internal loner? I can relate to the situation if not the specifics. I definitely sympathize with your pain if that means anything. And admire your patience and grace.

Yeah... I'm not trying to be all whiney. I just don't think I can talk about this to people in my life constantly. Also, they have only so much exposure- I know their experiences. I figure this is a board full of like, hundreds or thousands of people, maybe among all those numbers of experiences maybe there might be some experiences or advice that could be a bit different that might add to my own?

:/
Im not trying to be all attention seeky. But I just was trying to get some alternate view points.
I don't like being angry. I just am having a lot of trouble getting rid of it.
And yeah, I do kind of feel like I'm pretty alone in this- this whole "I feel angry but generally reject anger" thing... you kind of hit the nail on the head with that George.

Thanks for the commiseration on on the pain. It certainly helps.
<3

Originally Posted by Perna

Sounds like new dramatic change which will take its own time to grieve, etc.

Yeah. I just am kind of running out of energy to just hold on an deal. Which is stupid and annoying, because being angry takes up a lot of energy, as gayleggg said, but if I had more energy and tolerance for ickyness a this point I could just push through the "TRAWR I ANGRY I NO LIKE THIS ME SCARY PISSY DINOSAUR WOMAN" phase and come out a half reasonable human being on the other end.

Probably.
Ok maybe.
I might still have the T-Rex feeble arms. I digress.

Can you may work to deal with your anger/fear/"mess" by talking to/counselling others having problems similar to yours? I know when I talk to other people, don't think so much about my predicaments, it is a little easier for me for some of the time. There's energy and ideas we can get from others that helps me. People who have accepted whatever I'm going through or something I think of as more difficult give me courage and a better feeling of support/backbone? I'm competitive and figure if they did it I probably can do it too.

That's a good idea, and actually how I've dealt with a lot of other issues and challenges I've had. I'm kind of a "helper" personality [when I'm not being a dinosaur about to wreck up the place]. So I get a lot out of talking to people and helping them figure out things and work on stuff for themselves and improve situations they are having trouble with.

But I feel just... so extended. I feel not as much myself. I need to work on that. I do feel better when i feel like I'm helping.

I'm not sure what capacity I could actually do that in right now, but I could look around. It HAS always been really good for me.
It's something to think about, I just... hadn't been thinking about it. ha.

It's really great feedback, thanks.
I never listen to myself.