Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group I think I need help.

To Sinta, Angie, Ike, Leona and Rick, I've just been handed a bunch of work that has to be done before I leave at five - it's 4:30 now. argh. I just wanted to say thank you and I'll respond more fully on the morrow.

Hugs,

Kat

Hi Kat,
I can't really offer any advice, but much of what you talk about is the same as Shug, he snaps at the slightest thing when he's in pain, at me, at the kids, down the phone, at anyone! While I wish he wouldn't do it, I understand why.....it's the same for me if I'm in pain with anything....I snap and grumble and am downright nasty at times.......

So just to confirm...you are normal, your reactions are normal......but the people who love you will understand

Take care

Hey Rick!

So that's what I should have done with the T-shirt!!! Good idea. Just in case I end up with the mug, what should I do with that. Wait! On second thought, don't tell me! I'm afraid of the answer.

You made me laugh. Thank you!

Val.

I just wanted to comment that I think you must be a very kind and thoughtful person, and not only from the many nice things others who know you better have said about you.

How many people would take the time and trouble to respond to each and every response she received? Especially when there were so many! (I think you touched a chord common to all of us. We know pain and what it can do to us.)

Most people would have just posted a "thank you to all" post, which would have been fine. You obviously care about people deeply, enough to respond personally and individually. I am impressed.

Val.

Hi Kat,

In reply to:

---

Now, I know that the pain will be there whenever it wants and I have no choice in this. I don't take well at all to being without a choice in something, but I have a feeling that in this case surrender is what I have to do. I don't mean surrender as in give up, but surrender as in accept it as a part of my life in which I have no real choice. argh.

---

Yessss!!! You hit is on the head there girl!! And I really have to thankyou. What you said really helps me too. I think ...no I KNOW that is one of my biggest problems with AS. There are already so many other things in my life that I have no control over, and the AS doesn't allow me to even have control over my own body. And it really ticks me off!!!! Its the not knowing one day from another whether it is going to be a good day or bad day..... whether I will be able to get out of bed without the "rock and roll" then crawl up the wall thing. I was feeling pretty good for a couple of days... then one morning went to get out of bed, was able to sit on the edge ok, but went to stand up and WHAMMO, was on the floor in the same position. I was angry more than anything. Angry because I don't have a choice in this at all and that is what I am having a very very hard time dealing with right now.

I really do want to thankyou for reaching out for help. In doing so you have surely helped me. I am also going to try to "surrender" in the way you said. Not giving up, but accepting it as part of my life.

((((((((Hugs)))))))))

Pam

"Just like moons and like suns, with the certainty of tides. Just like hopes springing high, Still I'll rise." Maya Angelou

Hi Sinta! Thanks for my hugs.

You are right, of course, with or without AS we all have the capacity to be hurtful to others. It's just a little more on the surface when dealing with pain the way we do.

I have to ask myself, tho, when the AS becomes an excuse for being crotchety. Know what I mean? Where is the line between pain induced irritability and just plain meanness? I already have something of a temper, so I know that I have to keep it in control and I've come a long way towards accomplishing that goal about 95% of the time. So, when I have a hissy fit it's hard to recognize that it's a normal response to pain.

Thank you for the reminder.

Hugs,
Kat

Kat

Hi Angie! Thank you.

Yeah, I thought I was being very smooth and glossy - until this happened. What a wake-up call!

Funny, I'd always realized the incredible levels of support here, but this has truly brought it home for me. I think that just knowing I'm not alone in this will help as much as anything. That and you all are much fairer judges of my behaviour than I am - odd how that's striking me, because my closest friends are always telling me that I judge myself too harshly. If I had a nickel for every time they've said that.... Maybe it's time for me to really let that sink in. I don't have to be superhuman to be acceptible - to myself (most importantly) or anyone else. If that makes any sense.

A Libra, eh. I'm a Sagitarian with Libra Ascendant. That whole fairness thing completely makes sense to me! Unfortunately, I have the Sag. tendency to open my mouth before I think. It's got me into trouble before now. argh. But one can't fight the stars, can one.

Hugs,

Kat

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

Hey Melinda! Thank you.

Yeah, AS is an exercise in humility isn't it. Something to do with the constant reminder of our physical and emotional limitations, I think. The 'what ifs' become moot at some point and you're left with 'would've beens' and 'should've beens' that must also become moot if we are to maintain some level of sanity. Also, it's rather hard to maintain a massive ego when you have to ask for help for the most mundane of things.

I've been thinking about whether or not to move to pharmaceuticals and am still not convinced that it's the right move at this point. My massage therapist says that the problem with my neck feels like a muscle that's been torn at some point. I can't for the life of me think of when, but apparently it could have happened years and years ago. I asked my chiro about it and she said that as you work on these things, you start with the surface, immediate, problems; then as they are cleared up, or worked through, you come to older and deeper problems that need to be corrected. And honestly, the thing in my neck hasn't felt like it's a joint (although I haven't ruled that out completely, I'm still trying to figure out which pains are AS and which aren't). So, I've started icing and using my hot water bottle on it every night on top of everything else and I've added semi regular doses of Advil just in case. We'll see what happens.

My lower back is another story altogether. I know that's the AS and if it gets any tighter it's going to bend me backwards!!

I would love to get together, 'cause I do know you aren't all that far away.

Hugs,

Kat

Hey Sweetie! Thanks for the accolades.

You know, of course, that "it" will never win - and we, of course, have the final say in that. Darnit. Sometimes I feel like I should be wearing a sandwich board all the time - "I have Ankylosing Spondilitis and it's in flair and I'm not really a bitch, I just sound like it right now." I know that the people closest to me know this, but then there are the ones that don't know me all that well. It's for them that I want the sandwich board!

How do you handle this with new people in your life? I mean, I know you don't broadcast it right off the bat, but ... OK, so I'm going on a first date on Sunday afternoon. Just getting together for coffee, see if we click in person (we've been talking via email). I don't want to scare him away by bringing it up right away. Let's face it, it's a first date, we may never see each other again, but how do you bring this up? When? What about with new friends (aside from new potential dates)? At some point they will need to know that I have limitations, but I don't want those limitations to be all I'm known as. ARGH!!

As to Pete foregiving us one day, I think the chances are pretty good that he will. Of course, now he knows to team the novice players with the more experienced ones immediately, instead of waiting until the rangers are ready to shoo us off the course!

I heard from my psychiatrist yesterday. She's going on vacation until September 3, so I'm on my own until then. Well not completely, but you know what I mean. By then, of course, this flair will probably died down and I'll be in a better space. But even so, it's important that I learn new skills for dealing with this so that I can circumvent the nastiness in the future.

Hugs,

Kat