Thursday, May 31, 2012

Buckshot

By AmyAria Wednesday, October 08, 2008

My brain is full of buckshot, just this disorganized spray of noncohesive thoughts.  I think I know what Dick Cheney's hunting partner must have felt like......   Still, since the absence of a central idea has never prevented me from posting before, why stop now?

 

First thought: Why don't lazy people get RA?!  I've yet to meet or even hear about an RA sufferer who says..... "Whew!  Thank God I finally have an excuse for lazing about the house and making people fetch me things.  Oh Pierre!  Be a doll and fan a little faster with that palm leaf wont you?  Kisses Dah'ling!"  I mean, we are all (speaking for my people!) humans who generally like to be active and get things done!  Now there are plenty, oh yeah baby, PLENTY of people out there who would be in heaven to semi-permanently install themselves on a couch provided a remote was placed in their hand.  Why not them?!  I've got, and you've got, stuff to do!! Stuff we wanna do, but where do we find ourselves?!  On the damn couch!  ....and worse, even with a remote it's not like there's much we enjoy watching anyway!  I just lay there and see a carpet that needs vaccuming and dishes that need washing.  I don't wish anyone the pain though.  Don't get me wrong here.  They can just have the fatigue, the fingers that don't work, the knees that don't properly bend etc. etc.  See, I'm not like a total jerk or anything!  I'm ...you know... just saying....why not give them the rest of it?! Maybe we could put out a sign-up sheet or something.  Hand out free toasters.

 

Second thought: Trying to figure out the new "normal".  If someone could just apply some gosh durn logic to this stupid disease I would be EXTREMELY appreciative.  I like things logical, predictable.  I wanna be able to plan and organize, you know, have some stinkin' general idea what my day is gonna be like!  Instead it's like, wow hands are feeling better but what up with my wrists?  Then after a period of NOT exercising and eating total crap, I have my best week in months!  Get back on the bandwagon and then BOOM!  My feet swell up!  What up with THAT?! 

 

Thought #3:  I also, as dumb as it is, think about stuff like "how much pain do I have to be in to complain to my doc?"  I've never been in like a total full blown flair and thank God, but still my feet hurt.  Have I mentioned my feet hurt.  Yeah, they do.  I get the gist that hoping for no pain with this disease is probably pretty naive.  But in light of those way worse off, I don't want to be a pansy every time I get a twinge either.  No doubt I'm getting worse again, but again, what's normal?  I used to have a pretty good feel for when to hop on the phone and when to suck it up....now I just don't know. 

 

Random thought #4:  Cats are the most hilarious creatures on the planet. More importantly, they almost without exception, dig me!  See? Told ya, buckshot.

10/ 8/08 4:32pm

lol. i'm glad i'm not the only one who has a jumbled thought process! i don't think there is any such thing as "normal" with RA. you just hafta figure out your own "normal". and as for logic?? well... i always say "sanity is highly over rated". i totally get wishing that there was some amount of predictibility with this disease tho. it would be nice to make a plan for something and it not be marred or have to be totally disregarded when you wake up feeling like you've been run over by a semi truck. (like today, as its pouring rain, and all i want to do is sleep but here i am at work!) :) just being able to read things about how many other people are going through the same things i am makes me feel more "normal"... thank you!

10/ 8/08 5:04pm

I just came home from work and logged on, I have had a day from h e double hockey sticks. Can we say teenagers who are totaly deranged!!!! And there was your sharepost with all these lovely wacky random thoughts and even though your purpose may not have been to entertain, you made my day a hundred percent better just by sharing.  I think we all know people who might cope better with the fatigue, and random days of not feeling like doing anything but I have a life I need to live.  There are 25 middle school special education students who depend on me daily.  If ony I could use a sign up sheet just for people to deal with the fatigue, that would make my life so much easier and make my husband happier too.  I have random unorganized thoughts usually when I'm feeling bad and have too much time to think.  Hope you get to feeling like participating in life again soon.  Sucks to be a benchwarmer!

10/13/08 3:29pm

Dang!  You truly are one of those "special people"!  I've always thought you had to be slightly off kilter to deal with that age group!  My Aunt Jill did though.  She taught for over 40 years and lived to tell!  My mother was a HS LD teacher so I always heard all of the challenges of that group as well.  Seems like you get the best of both worlds!  Hats off to ya darlin'! 

 

Oh and as to being entertaining or not, the day I'm really unable to crack wise somebody better come check my pulse.  It would take some sort of drastic gene therapy to cure me of being a smart a$$.   Wink

Lene Andersen, Health Guide
10/ 8/08 7:27pm

I wonder if someone would fund a study about RA and correlation (if any) with Type A personalities? Of course, it's not like I have actual TIME to do a study like that, but i'm sure I could find the time if they paid me enough...

 

I want a Pierre.

 

Amen on the cat thing.

10/13/08 3:37pm

The Type A thing really does make me wonder.  However it may just be that we are the least able to keep from screaming our frustration, therefor people get the "benefit" of hearing from us more often. 

 

Re: cats.  "The Onion" has a shirt you can buy off their website.  I'm gonna tell Santa I want one this year.  It says, "Kittens do nothing but plot murder all day."  How a critter can be simultaneously so sweet and so vicious at the same time is a wonder of nature.  I don't know what I'd do without them!

10/14/08 11:54am

Love your post :)  I was never on the go 24/7 but nor did I like to sit on the couch all day sipping a drink and watching TV.  And look at me now lol.  The remote control has been worn down specifically to my finger shape and the couch has a permanent impring of my behind.  I hate sitting on the couch and watching tv...I too look at the pile of clothes laying there...the dirty dishes...a spider crawling on the wall...I'll take the pain of a huge flare up everyday if I could just have 1/2 of the energy I had 15 years ago.

Anonymous
Audrey
11/18/08 3:40pm

I hear that.  I found out about 6 months ago that I have RA.  Taking all the same as most of you, Enbrel, Metx, prednisone, sulfa..same ole things.  It is like my brain does not understand I have RA, I will sit and see things I need to do but 90% of the time there is no way I can get up and do them.  If I try I find out fast that it is not gonna happen.  Since I started Enbrel a couple of months ago I have been able to get up to go to the bathroon without crying all the way.  I have a couple of days after injecting the Enbrel I have more energy and can do a few things then I have to take the methx and I am on by backside for at least two days.  No energy and just a dull feeling after taking it. Even though I still get up and go to work I just don't feel well, not sick to my stomach just tired and achy.

 

Now this weekend some new pain, I raised my arm and when I went to lower it I screamed so loud I scared everyone in the house.  It felt as if someone stabbed me and continued to twist the knife.  I put my left hand up to my shoilder and felt the joint pop back in.  No clue if it is RA related or I did something to it?  It has been that way for two days and I found out last Friday that due to non payment our group plan at work has been canceled.  The owner assures me that in a few days it will be reinstated.  I called them and I was told that even if he pays it they will have to consider reinstatement.  We have several people with medical issues but I had a knee replaced that I am still in pain, I was told due to the RA which I guess I had when they diagnosed me with Osteo?  Now the Enbrel is costing the insurance company over $1400.00 a month.  The owner just gave them a perfect excuss to dump us by not paying the bill.  I will find it a miracle if after he pays, if he does, that they will resume coverage. 

 

Well, if I am not in enough pain now just wait till I am out of meds, I have one injection left and two doses of methx left?  I am my only family income.  I can only pray this gets resolved as I do not want to go back to having the port a pot next to the bed cause I can't walk the 6 feet to get there.  I am never not in pain especially my feet, but at least I can try now to grin and bear it and I can live semi normal.  Trying to get another job when you have RA would be very difficult.  If you don't tell them, they will know something is wrong.  Insurance agents tell the owners what you have and how much it is costing the company and making the rates higher, so much for privacy laws?

 

Sorry, I am haveing a ME pity fit.  I am so glad I can do that with others that understand.  My husband just looked at me like I was crazy when I screamed.  Again, as I have heard some of you say they can't always see the pain from the outside, they just don't understand.

 

Take care all, have better days....Peace and Grace, Audrey

11/19/08 3:00am

Some days you just have to let it out.  I sit in bed at night and have a pity party in my brain just to get some of it out!  Who else are you going to talk to?  My doctor thinks I'm whining if I start complaining...and I don't like to complain at work as I'm the manager of a small retail store and who wants to hear that all day!  So I complain to my husband sometimes but mostly keep it in.  I think they should have shrinks that just listen to people in constant pain (free of course) and empathize.  Thats all I want...just someone to say I hear you :)  I hope your insurance gets reinstated.  I've been sick for almost 14 years and for 8 of those years had no health insurance.   Lived on prednisone cause its cheap LOL.  So I will keep my fingers  crossed for you to keep your Enbrel!!!

Anonymous
Audrey
11/19/08 10:13am

Thank you for your reply, I hope he works out the insurance situation but I am not holding my breath.  More afraid of loosing my job.  They have been struggling here for some time.  Like you I will just call my OBGYN and get what I can afford till I can get insurance again. 

 

Everyone stay happy, have a great Thanksgiving, and lots of better pain days.  I know most of us always are in pain, at least we can hope for a little less pain through the Holidays.  I don't know about you guys but when you are stressed it makes the pain worse?

 

Take care, Peace and Grace..Audrey

Anonymous
bflogrl
12/31/08 10:01am

i don't know if it's true, but i hear some drug companies will give you free meds if you don' t have insurance or are under-insured...

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By AmyAria— Last Modified: 09/03/10, First Published: 10/08/08