Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Re: "I think I need help" to all who posted

To Kat and all the other posts:

First, Kat, I just want to say to hang in there, when the going gets rought, the rough get going. Second, to you and everyone: thank you all from the bottom of my heart!

Why? You ask...hmmmm.

As I sit here fighting the tears back from all of the over bundance of support here...just over one subject. All of this time, I had thought that I was a major ragmaster. I have practically ripped my families heads off on numerous occassions, my poor husband and son, and just all the others that I have come across in the past two years. I know that I have been nasty to them on more than several occassions...and yet, they are still here, maybe not understanding me, but, they have never left me. I sit and cry for all the harm I have caused not ever meaning too. The feelings that I have kept bottled up, the roller coaster of emotions....the explosions when the cork finally flew off the bottle and popped someone in the eye. All of this time, I have thought I have some real mental problems, wondering why anit-depressants have not helped, and why my husband has the tendancy to use his favorite pet name for me: "doom and gloom". Wondering why all of a sudden I hate people (a new occurance over the last couple of years), how I don't want to be bothered, and just want to turn into a hermit a good portion of the time. I wondered where my used-to-be usual cheerfulness and always smiling personality creeped off too.

Thank you all, for helping me understand that my fits of anger, rage, dismay, etc were truly not all me...that I was just not an ugly person when I did not mean to be. And, thank you for helping me to understand what a support group can really do for you. By reading your post to Kat, I found help when I did not know I needed it. I found courage, love, understanding, and for the first time in a long while, this hermit found friendship from somewhere other than my immediate family.

I just want to say thank you to ALL of you who posted for Kat, because in doing so, your meaningful words helped a bystander.

Thanks you all,
Lori

Lori,

You go girl. Just having people who understand what you are going through is a true blessing. Good luck to you and peace be with you and your family.

Rickey

Lori,

I've had this dreaded disease for 6 years [diagnosed time anyway] and I've read a lot of posts and I have to say that every once in a while someones hits home and yours has done that for me...........

I have felt the way you have described for quite a while. I'm not really mean but not as cheeerful as I used to be and while my husband says I'm not doom and gloom, I feel I am at times I feel like a complainer and a whiner, but I have to get it out to someone besides here....don't I?

My irritance with people is different for me. I thought it was just getting older and maybe I've been in business too long because I'd like to whack them on the head at times Do I have no patience left? My husband would always say he'd love a cabin in the woods with no people around and I'd always say not me. I need the mall and movies and friends and activity........now, I've started to say, maybe a cabin in the woods would be great. Would I have to see anybody that didn't have fur and 4 legs? A hermit is exactly what I'm longing for....
Now that doesn't mean I don't have a few friends I love to spend time with but it's the ones who really accept me with my limitations and my frustrations........and they are not always saying, you're fine, you look good. They listen to me.......

I'm ramblin' here but just wanted to say that I identified with your post and wanted to let you know you are never alone as long as you come here

hugs,
linda

That's awesome Lori!!!

Although I just posted to Kat's post, I'm glad that you found strength and comfort there, we all deal with pain and it affects our relations with people, you are not alone in that, and we understand!!

Peace, hang in there!!
Linc

Linc O'Brien

Hi Lori

Just wanted to say that I understand.
I understand the flaring up at our poor families. Problem is that even if they try - they can never really feel how painful and exhausting this is. Still that is not their fault - it is just so hard for us to accept sometimes though.
Most of all I understand the feeling that comes from the immediate love and support that is shown here. Awesome dosn't begin to describe it. I remember that I was on such a high for the longest time after first posting here.
Now it is so much easier to take whatever crap that the day with AS brings us because we know that we can come here for some true understanding at any time.

You are going to love it here Lori

Take care

Maggie

Rickey,

Thanks for reaching out and just listening. :-) Understanding is just one of the many blessings when you have family and friends.

Take care of you and yours,
Lori

Linda,

Thanks for your response....atleast I know that I am not the only one who has/is longing for the hermit life. :-) Sometimes, even my four-legged buddies (and my one two-legged with feathers) get on my nerves and I would just love to lock them in a closet or something. Sometimes, when all else fails, my furry and feathered friends become my best listeners. ha ha ha I am still waiting for the day when the cockatoo says, "ohhhhh man, I hurt like hell". hahaahahahahahahaa

I too have very few friends that I truly share things with, and even then, most of the time it is just bottled up and vented on my husband. He is my true outlet til now. (aside from my mother in law who has osteoarthritis in her back and I think RA...now being tested for possible lupus.) She and I, now that is a combination! We both understand each others pains. lol Our motto is that we are just falling apart and the people around us just do not get that part. They do not understand what it is like to have a constant throbbing sensation, or a constant burning sensation, or when it feels like some has your head in a torture chamber ripping it off at the seams. Those things are hard to describe to someone who has not experienced that type of pain. It is a good thing that I am an artist, and good with the english language! Sometimes, in order to get my pain across to my husband, I can paint a picture with words that even Friday the 13th movies can't even shake a stick at! hahaahahaahahaahhaahahahaha

Anyway, being a hermit is not so bad. But, I do realize that there are times when you truly must put the pain aside and play the role of an actual human being. Like for my sons baseball games (I love baseball), and now for football and on my bowling nights and softball games...when I can play. (don't know if I'll be able to this sunday with the neck thing or not) Oh well.

So, anytime you feel like you need a hermit...this hermit will always be around even if I do not appear to be out in the open. :-)

Take care of you and yours, Linda,
Lori

Linc,

Thanks for your reply. Yes, this stuff can be tough on relationships. This I have learned the hardway. My husband has just learned to let me vent out my frustrations. I think that the best part is that lately...especially since the new doc has come into the picture, he has actually started to have some sympathy. Now, he even asks how my day went! (a rare thing...usually that is the other way around, lol)

As luck would have it, we both had a doc appt. the same day recently and at the same time. While he was at the office, and we were checking out, the nurse practitioner was telling him how they x rayed me and gave me a couple of cortisone shots, etc. that I truly had a viable problem. Ever since that day, he has given up his tempurpedic pillow, bought me some body lenght massager/with heating combination, and even asked how I was feeling every day. What a change. I think he thought I was just looking for an excuse to be out of work, and that I was a hypochondriac.

Funny how hearing it from the horses mouth (the doc) seems to make all the difference. Almost like seeing is believing.

At any rate, take care of yourself and see you around on the board!
Lori

Maggie,

Awesome is truly an understatement! :-) I can't wait to jump on my computer now. lol It is good to have found a place that is a home away from home. Perhaps, I might even feel more home here than in my own home. lol

Again, thanks for the warm welcome, Maggie, and that cupid is darling. :-)

Take care of yourself,
Lori

Lori, I replied to you on the other board, but I just wanted to say that there are so many times when I would like to take up the hermit's life. Sell the house that's been giving me so much trouble, take my cats and find a place in a field, somewhere near trees and just hide away there for the rest of my life.

I've had a tendency in the past few years to be quite a loner. I don't have a lot of friends, but several dear friends and I don't go out alot unless I'm working on a show. It's hard to be with other people sometimes, when my thorasic area is burning (AGAIN!!), or my lower back and hips are sore, or the pain in my neck is all encompassing and feels like its burning a hole through to my left eye. When other people are around, well you have to be nice, and smile, and socialize, and pretend nothing's wrong. Sometimes I can handle it just fine, others it's all I can do to keep from clawing someone's eyes out. It's just so much easier not to go out at all.

But we go on, and persevere, and pretend to the outside world that everything's all right. And sometimes it really is.

Hugs,

Kat