Wednesday, May 30, 2012

just venting....

By Jene Thursday, June 18, 2009

So....last night sucked....I hate RA waking me in the night just to mess with me.

I hate waking up paralyzed by pain but unable to move and get more comfortable...

knowing there isn't a "more comfortable" right then.....

we sleep with the tv remote between our pillows....my husband and I...

I knew there was no way I could roll over or reach behind my head and get the remote....

so I tried to get up to just turn the tv off...thinking that the lesser of two evils...

there was no "lesser" last night...

My husband heard me crying and asked

"did you take the med? where does it hurt?"

because he rubs my shoulder or where ever if I need him to...

I told him I took the stupid medicine and I'd be ok....

don't want to keep him up knowing there's nothing either of us could do.

I couldn't answer the "where does it hurt" part....at least not out loud

because every possible bendy-place on my body hurt and on both sides....

jaws, shoulders, elbows, wrists, fingers, hips, knees, ankles....

I laid there amazed at how emcompassing this can be....

Livid because I couldn't "man up" and will myself into feeling better

or at least feeling less handi-capped....

I honestly can't believe I'm putting this our there for everyone and their dog to read

and know....

No one I know personally knows the true extent of what this does to me sometimes

RA isn't something I've posted on facebook

It's safe to admit it here though....because someone else out there can probably relate

and won't think me weak for feeling so defeated.

I'm one of those people who's lead a somewhat soap-opera -ish life at times...

and I endure whatever the drama is...and really try to not to let anyone know

how much things truly affect me....

Haven't quite figured out how to do that with RA yet....

because while my mind and heart are saying "man up people deal with much worse~ daily"

My body betrays me with enlarged blue-ish knuckles and the different gait when I walk...

So there it is....

ironically I felt better when it was finally time to "get up" this am

Guess the extended release anti-inflammatory crap I took before bed finally kicked in?

Nice....

So that's it for now...thanks for listening to me vent.

I appreciate it more than you know.....

side effects ?
6/18/09 9:00pm

Hi Jene,

Thanks for the window into your RA.

Yesterday, I complained too on my sharepost. I said I need a vacation from RA. I think you might need to come too... Cool

 

I know just what you mean. I am on FB with the RA as of this week. I had been saying to myself to keep it off because FB is a happy place... Hope you will come see me there sometime if  you are comfortable. You can look under kelly young or rheumatoid arthritis warrior.   

 

I will still be "happy" there, but still I am being convicted to be real to break down walls.

 

Hope you get a good night's rest. I find good nights often follow and bad ones. Guess that's cuz I tend to sleep like a rock. Haha.

Kelly  Cool

 

www.rawarrior.blogspot.com

 

Brad, Health Guide
6/20/09 2:28am

I belong to a group called Rhuemamisfits. At least 50 of us are on FB and we use it as a sub site. We can talk about anything and have a great time......hey, where else can you send "pain meds" in a gift app! Don't be afraid to be you on FB. RA is real, and so are we! We don't hide anything.

 

Brad

6/20/09 9:17am

amen to that!

Brad, Health Guide
6/20/09 2:23am

Glad you did vent! We have all been there, done that. It is so hard to deal with, this is one nasty disease. Sounds like you have a very supportive husband and that is a great thing to have. Lean on him. I do on my wife, didn't like it at first, but she is my rock now! You need suppport as well as the meds. Please reach out to any of us when you need it. Hope you feel better.

 

Brad

6/20/09 8:36am

Jene, thank you for venting as I've been sitting here reading all the new posts because I finally crawled out of bed at 3am after a night just like yours!  Do you ever think that maybe some parasite has crawled inside your body and is eating it from the inside out?  That's how I have been feeling a lot lately-  I even think "maybe I don't have RA and it's something else".  Makes me confused and crazy!!  So never think you are alone because if you are fighting the pain and exhaustion in the middle of the night again, just think of me and I'll think of you - because we'll probably be doing the same thing!  I think it is quite classy to get this stuff off your mind- you're right about this being a safe place because we truly understand and will keep you in our thoughts.  Hang in there... thank goodness there is always a tomorrow- you never know what it will bring.

Maybe one of these days it will bring a miracle!

Donna

6/23/09 2:20pm

Hi.

Sorry it's taken me so long to respond....no excuses ~ kind of just go in spurts online.

Thank you everyone who commented on my "venting"....

It's been a strange summer for me so far....unemployed....a little afraid of getting a new job and what I'll be able to do. 

Trying to get as much done at home as I can so I'm contributing something....

Been to the pool a few times...yesterday we went after I picked up my oldest from camp.

There were a lot of people there and for whatever reason they congregated around the stairs...adults- laughing, drinking etc...not obnoxious so much....just not a group I felt comfortable "excusing myself through".

Either way it was humbling to sit by the edge of the pool...slip into the water and realize that I pretty much was stuck there....couldn't boost myself enough with my ankles or support myself with my wrists...both necessary to get out of the pool when steps aren't an option.

My husband said I should've said excuse me and made them move....but to them that would just look like I wanted to walk through their party....my issues aren't obvious to strangers....not blatantly anyway....so it was humbling I think to realize at that moment I was "disabled"...not that I am all the time....or that I've accepted that label by any stretch of the imagination....but in the pool, at that moment I knew that feeling....trapped, embarrassed, frustrated,sad....

I decided to swim thru the deep end and use the ladder there...it wasn't easy and was probably a little comical but I was able to get out of the water....

Perhaps that's my life right now....just looking for the ladder....

Everyday there's something new.

7/ 2/09 12:54am

my oh my....when i read about the TV remote being betw the pillows, that's exactly where ours is.  and, i thought i was the only one.  i stick Neosporin under my pillow so that i can replenish throughout the night.

 

(does anyone else have a 'hand infection'....skin peeling, badly chapped skin on fingers?)

 

then, i read about The Ladder and that's where i was last week.  decided to enter the pool using ladder in deep end so as to not bother those by the stairs.  well, i slip and called out for help to husband, only to realize....i can fall backwards into the water...i'm not slipping on concrete.  a new experience, as you say....a new way of being for me now that i can't do what able-bodied people can.

 

so, i hear you.  and i'm comforted that i'm with you.

 

-Janet

 

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By Jene— Last Modified: 12/26/10, First Published: 06/18/09