Rheumatoid Arthritis Support Group

ShepherdTrainer: I admire your sense of humor & kudos for all that you & your wife endure!! I not only have the stressors of RA, my "wonderful & semi-supporting" husband, motherhood & my so-called "family 1st" job as a Social Worker...I also have an ill parent (my mom/heroe) fighting breast cancer for the past 2.5yrs & suffering from Lupus for the past 13yrs.!! She's my #1 supporter & best friend. We were not the best of friends prior to my marriage, but after my kids were born & later as she became ill, then I became ill... we realized that life is much too short & so we chat everyday & say I LOVE YOU at the end of every conversation. Our lives have changed drastically, a full 360. My mother is overwhelmingly blessed to have a husband (my step-dad) that loves her unconditionally & has been her pilar of strength & hope through her journey(s) of such devistating illnesses.

I not only live with the fear of becoming 100% disabled, but also with the fear of my mother's passing. I know we are born to die, but when I get depressed I can't help but think: WHY ME? WHY US? It's not fair!! Why couldn't I get this later in life, like in my 80's when I'm pretty much useless?? Why did my mom get breast cancer, there's no history in my family of any form of cancer!!!??? Why did it spread to her lungs, didn't they take it all out already from her breast? She has a beautiful soul & here I see hardcore criminals live a long life, rotting away in jail, cancer-free!!! OR think to myself, my kids will not be able to endure this either if my own husband can't deal with it most of the time. I often tell my husband to be discrete during his nagging episodes, because I want my boys to be strong & sympathetic when & if they are ever in this predicament when they marry. (sigh)... I ask him to be a good example of a loving & caring husband who no matter what life brings, we can get thru it TOGETHER!

Don't get me wrong, my husband is a good man & I do give him alot of credit for the support he HAS given me, because SOME is better than NONE. It's funny that you mentioned the vows thing, as I often REMIND him & add that I married him in sickness & in health, BUT certainly NOT in WEALTH!! LOL!!!

Fowlerkn: I feel anxiety around the clock, as well. You just reminded me of my X-Mas party last year...I was in "tolerable" pain & my co-workers could not understand why such a young person would not be tearing up the dance floor! I not only suffered from the pain in my joints, but I had already laid my high-heels to rest since they day I was diagnosed...my feet are no longer stilleto friendly, to say the least!! 1 or 2 co-workers know that I have RA, yet they just think it's arthritis that goes away with Tylenol(i wish). Since I don't broadcast it,alot of co-workers often question WHY IS SHE LIMPING? WHY IS SHE TYPING WITH ONE HAND? WHY IS SHE TAKING AN EARLY LUNCH (when I have to take my pain meds) OR WHY DOES SHE GET TO WORK LATE (when I wake up stiff), LEAVE EARLY (when I have an appt. for my lab work or infusions), MISS WORK (when my flare-ups are a 10), etc...You get the pic!

I often find myself telling them: Oh, I worked out & hurt my arm or stepped wrong & hurt my foot, specially to the nosey co-workers who like to gossip about everybody. Others look at me funny & with doubt, since my husband is a police officer, they automatically stereotype me as the battered wife who's married to a wife beater....LOL!!!!!!!!!

I've learned that by sharing my illness can create biased opinions about me and this is another obstacle I have to overcome at work, full force!!!

Post edited by: mikenmattsmom, at: 08/29/2009 08:52 PM

i couldn't have said any of what you typed better myself! i have become quite the little 'liar' when it comes to participating in after work stuff and company parties. it is just easier to have an excuse that sounds rather legitimate than go into a lengthy explanation of how i REALLY feel! Of course there are a few co workers who know, but they truly don't UNDERSTAND. Big difference there!!

So, right about now I know that several co workers are pretty drunk and dancing and doing jello shots or something. All I can think of is how happy i am to be at home at my 'safe' place! Oh, they are sitting around a campfire also....making smores I bet! : )

Have a peaceful evening! I am! : ) No dancing for me tonight.

mikenmattsmom: I just LOVE you honey! I love the way you express

yourself, your attitude! Your hubby is ANGRY because you are sick

dear.....the snide remarks are a sure sign of it. If he is helping

you at ALLLL and still loving you....you are a lucky woman. So many

of them want to jump ship(in Texas we say "haul ass") and run.

KVNJ has a page on here somewhere that you need to print out and post at your work to inform the ignorant what this disease is, AND

what can develop (and usually does) while it is eating away at your

body and mind.

Fowler....your bunch could read that too....

If you can see anger between the lines....my husband was a jerk

yesterday too.

MMMM....so sorry to hear about your mother....the only saving grace

here is a wonderfully long goodbye. With your attitude you can be

THANKFUL of all the time you have spent loving each other during that gooodbye....cherish every moment.....sudden heart attack hurts

so much more, and it is so much harder to cope later.

You are a lovely girl,

Kathy

Now this is what this group is all about. It is still so heartwarming and humbling to read about everyone's struggles with this disease and know how close to home they hit. People understanding why your not dancing - I wish. If they could figure that out the rest of what is needed to understand wouldn't be to hard.

Fowler, the lying thing......lol...I never really thought about it but I totally relate. My biggest reason is simply "because i don't feel like it". It's just to hard to keep giving what I'm sure sounds like "exscuses" to so many.

Welcome to all the new members. Mikenmattsmom, Ann, and Ypiper. This is such an awesome group and just got even better.

Hugs

<~~ Raising the champagne glass.. <ting ting ting> A toast to all of our members!! YOU are what makes this such a warm, inviting place where we can kick our shoes (or pretty slippers), off and be just what we are. No pretense, no "trying to act like I feel ok", and no jugement.... I am in awe of each of you, and blessed to be in your presence. Thank you....

I never lie about why I don't do something, others will understand or not.

That's right Ann, what you see is what you get. If they don't like it, tough noogies!!!!!!!!!!!

Hi Kathy, thanks for the uplifting words!It's Tuesday & I'm overwhelmingly stressed to say the least. My immediate supervisor has been giving me grief since last week. She has been sending me & the big bosses e-mails about my use of time & work schedule, even though we had made arrangements that she suddenly forgot about. It's evident that she has singled me & seems to only reprimand me meanwhile others come & go as they please. I've not only had day care issues but also flare-ups in the a.m. that have caused me to get to work late. While it's not a daily habit, she has been informed many of times of my illness, but her ignorance & the pressures of the other employees who feel I shouldn't get any "Special" treatment for whatever it is I have-are pressuring her to reprimand me & write me up. I have had 3 other supervisors in the same agency for the past year & not one has ever written my up nor made it an issue. She's been my supervisor for the past 6mos., started off a tad bit flexible, but once the 2 ladies who always seem to instigate prob.'s with everybody, she began riding my ass! She wrote me up today for arriving 16 min's late ( I was in pain since I had woke up, my husband had to go in late to work to take the kids to school for me). She docked me 30min.'s & was demanding my signature! I refused in front of her witness/other supervisor/union representative. She exploded when I refused. She had an outburst & said to me You're accusing me of harrassing you and I warned you that if you kept coming in late no matter what the reason is, you would be docked. She knows I have no time in the books & in allows others to make up their time. She also said: You may have gotten away with this with the other supervisors but not with me. I will write you up!!!!! I'm so upset right now, I'm in pain & all of this stress has taken an enormous toll on me. I feel so helpless. I've given her & my other 2 personnel managers my FMLA forms & literature re; RA...they refused to accomodate me in every which way!

Hope everybody had a much more pleasant day than mine...Please keep me in your prayers.

Post edited by: mikenmattsmom, at: 09/01/2009 07:27 PM