Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Need a little pick me up here.....

I am getting a little stir crazy with this ongoing flare. I am usually kind of hard to beat down but this one is doing a fair job of it. I am getting very tired of fatigue, pain, weakness and being shut in. The dr. told me to rest for 2 more weeks with the increased Pred and if I am not better we will try something else.

My arm hurts so bad tonight even with the Lidocaine patch that I can't sleep. AND I need to sleep! I know I am not fun to be around right now and I don't like that. I always try to keep on smiling around here and right now the smiles are hard to get up.

I appreciate being able to come here and share. People who don't live it don't undertand. Even my family doesn't truly understand. I have had a sister make some really rude remarks such as.....Do you know how many people in my dept. have Lupus and come to work every day? Well, duh, so did I for many years. "Aren't you glad it's your arm and not your leg that you have to put weight on like I did mine?" Well, duh, pain is pain and this time it is about me not her and the months that I consoled her. Sounded like we were teenagers again. Sorry teenagers who are reading this but you know how you get with your siblings some time. Hubby says "Be patient. I am." Well, duh, I could be too on that side of the equation.

Can you tell I am bummed? Thanks again for listening.

Blessings to you all.
Possi

I'm sorry Possi. That sounds really frustrating with your sister. Sometimes people just don't think before they speak eh?

I really hope you come out of this flare soon.

Thinking of you
Chelsea

Possi,
So sorry to hear of the flare...that isnt fun at all...sounds like youve been having a time of it lately...
You are such an encouragment to so many on this site. (i know I gain more interest with certain peoples comments, you are one of them) You always know what to say, and are such a fighter to have what my kids and i call a "happy heart" You really remind me about the joy that is a choice. I hope you know we are all thinking of you...and wishing we could make it better! I admire that you are honest enough to identify your struggle of smiling...but willing to try and make an effort. I know i struggle with this too on a flare...talked to my rheumy about it just yesterday! Will be thinking of you and praying for you as well.
Jaye

Hey Possi,

So sorry to hear that you're feeling so bad. It makes it so much more difficult when people don't understand or treat you like a cry baby, wimp or a weak person.

I'm going to comiserate w/u for a minute. I really hate it when someone asks,'What's the matter?' then when you tell them, as if they didn't already know, they have some stupid thing to say. Honestly, it's like they ask you just so they can say their stupid thing.

I worked for yrs beyond what I really should have because of the guilt & shame those people put on me. I'd pick my son up from school, tend to animals & then pull a chair up in front of the stove because i couldn't stand up (could barely stay awake) & cook dinner as I cried because I felt like I was dying.

Then one day I went to work & I was limping in pain but had my happy face on. A friend who must have been looking at me when I didn't notice caught a glimpse of that 'pain face' that at times is almost impossible to hide. She came up to me at the end of the day and said, 'Tam, I know so many people on disability that don't have any problems even remotely close to what you have. Don't take this the wrong way Hun, but you need to drop that pride & take care of yourself. You don't deserve a life like this. Your killing yourself.' Needless to say, I keep her very close by my side.

If you have people like that in your life like that, hold their hand tight & stay close in the hour of need. Try to keep those others at bay, at least when you are so vulnerable.

Some people don't understand & others are afraid. Afraid to see what they perceive as weakness, afraid of losing us, afraid for themselves. Fear makes people say some pretty messed up things in the disguise of superiority etc...My husband used to say to me when I was limping really bad,'You know how to make a man feel better that has no shoes? Cut off his feet!' People can be very insensitive & downright mean, but the bottomline is-it's really about their issues. I know it's hard to see that when it's happening but sometime sit back and try & figure out what your sister is really saying. It might surprise you!

Sorry for going on & on. I just feel sorry for you because I know how much it sucks to be in those shoes.

Take Care!

Possi,

I just sent you a big blubbering pm...lol

I can see I am gonna have to make a trip down there, bring some candy, popcorn and movies, kick Floyd out of bed and you and I can just have some girl time..lol

Of course then it would be can you get me this, and I would be like no I am in too much pain you get it, then you would be like I cant get it you get it..lol well we could keep Floyd around for that..lol

When I come down make sure your sister is there so I can give her a "BONK" on the head...big goober!

You just keep your chin up, you have to keep positive thoughts (pttttt how many times have you told me that) and work on getting better.

I have been keeping you in my thoughts and prayers 24/7

I know, I still have friends that I write letters too and I write LOTS of pages and they go on and on about Bill and the kids and Jack and Ava and all my ills and pains, I can send you like a 10 page letter that will take you like 2 hours to read and then you can be really bored...lol

I will call you tomorrow, if I havent lost your number AGAIN...lol I dont know why I havent just put it in my phone..lol

Just remember your family loves you (they really do) I have seen it, your friends love you and so do I well and Bill and the kids too..

Love you,

Lisa

Hi Possi

Why do our sisters have to be that way? My sister well she said "if you hadn't gone to the doctor in the first place you wouldn't have these health issues." I am thinking she really didn't care to hear how much pain I am in, and my need to feel well. I don't tell her how I am doing anymore. I told her just recently that she is a great aunt, but nothing about my health issues.

When you are down, you need your family to be there to understand, and hopefully let you know how much they care for you. Their caring, and love, always has a way of picking you and making you feel better.

Possi, as a sister from your KickAS family, I want to let you know how much you mean to me. To let you know that I know, and understand the pain you endure daily. I know also it's the gentle hugs, that goes a long way to help take the hurt away. My Kayla Girl, she is also sending you lots of kisses. If she had her way she would also like to comfort you with her heated body, to also help ease your pain. (If only we didn't live so far apart). She has a way of snuggling in behind my back, and her heat does wonders for my back. Having her lay close to your arm, would surely ease the pain, as it does in my back.

I am sending you lot's of well wishes, and gentle hugs. As Kayla Girl gets car sick, I don't think it would be good to send her.

Please feel a whole lot better soon, from you sister.

Lots of love, hugs, and kisses

Kayla Girl and Gerri

Hi Possi,

As Jaye stated you have been a source of encouragement and inspiration for many of us here.

May God continue to watch over you and your family and care for you in ways only He can. You are in my heart and prayers.

Hope you get over this flare soon.

Ali

hey kid,

pull out all the stops.

draw yourself a flaggon of that home-brew'd flavourless grain beverage ( or two...your mileage may vary);
set the outhouse on fire and jump thru the flames; takes off your clothes and dance around the b-b-b-banana tree.

Thank you Chelsea. Actually that was just my sister being my sister. I really should expect it. Then I got a wonderful laughing phone call from my baby sister in NV which more than made up for the other one. I do have some great siblings. It is just like any large family. Some of us are harder to get along with than others. I think even more so right on the heels of losing our parents. I think we are all still sorting things out. I love my sister but she is over a huge huge job and it is hard for her to come out of her "boss" mode especially when that is one that is easy for her.

I really need to come out of this flare. I don't want another chemo drug piled on me but I want to live the best quality of life I can so I will if I have to.

Thanks so much for your encouragement.

Blessings.
Possi

((Jaye)) Thank you so much for your kind words. I also appreciate the prayers more than you can ever know. Well, I am sure you know or you wouldn't have so freely given them. I appreciate the "happy heart" comment and that is what I strive for but I am only human and I get tired of it sometimes. I have to work hard to remember that "me" and my "body" are not the same and to remind myself that even though my body is deteriorating; "I" am ok. I just am tired of the long hot dry summer (along with all other Okies and Texans and I am sure others) and a flare that has gone on longer than any in a while. It is a combo of things. Severe RA flared in my joints by overdoing it at the gym during a severe Lupus flare. Doesn't make a lot of sense does it but I guarantee that was the rhuemie's words. I am very weak and shaky and that adds to it. I am not supposed to use my right side at all but he doesn't want to immobilize it. It is impossible to go through the day and not reach for and do things with your dominant hand so by night I can't find a way to get it comfy.

Oh, here I go again. Not going there today.

Thanks so much. You really made my day and brought tears to my eyes.

Blessings.
Possi