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Thread: Just another rant

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    Default Just another rant

    Hey Ya'all
    We all experience people who do not know or understand what Lupus is, or how it can affect those who have it. I do not expect anyone I know or meet to be educated about this disease. However, I have one co-worker that drives me crazy. My Lupus is not a secret at my work, but it is not a big deal. We all have stuff we have to deal with and we tend to help each other out. For example, One gal has a bad back so has trouble standing all day, or sitting all day, therfore, when she becomes uncomfortable in one position, someone will trade with her so she can change positions. This one co-worker though is a complete (being nice here) dork. He is diabetic, so should have some understanding of chronic disease, or at least having a bad day. Unfortuanetly, he just seems to care about himself, always. He NEVER trades with the gal with the bad back, he will suggest another elderly employee, who has been assigned a sitting position due to his age and a leg problem, should get up and work a standing position so that he can continue to sit. OK, so obviously this guy bugs me just by living. Anyway, I tend to just ignor him whenever possable. So, a few days ago, I am working and he interupts me to ask me about my lupus. Fine, I answer his questions about what it is in general and how it affects me. He proceeds to tell me that I don't look sick and that he once worked with someone else who had lupus and she "looked terrible". Unfortunately, he did not say it in a ' thanks for the information, you seem to be manageing things well" kind of way, but in a " you are not sick because you have not keeled over in the middle of the floor" kind of way. Much as I would have loved to smack him, or at least say, ' you don't LOOK like you have diabetes ', he is not worth the effort. Anyway, that is why you all are here, so I can rant to you who understand so well how stupid some people can be.

    On a brighter note, Happy Easter to everyone! We are going to color easter eggs today, and have an easter egg hunt. Probably have the hunt inside as it is only supposed to get to 30 F outside today. One of my favorite stories about my kids is how when my oldest (now 18) was in about 1st or 2nd grade, he came to me and said "mom", "yes Paul", "well, umm, mom", "what Paul", "well, uhhh, mom", "what Paul", .....this goes on for 3 or 4 minutes until he finally gets up enough courage to say "what if, ummm, well, what if I said, uhhh, what if I said I, uhhh, I knew there was no such thing as the Easter Bunny, would I still get candy?" my reply "what do you mean there is no such thing as the Easter Bunny?". He immediately left without saying anything more and I never heard about it again.

    Paul is eighteen, not sure why the computer put in a smiley face, although Paul does make me smile.

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    Happy Easter, Quarterhorsegal. Don't know how you resisted smacking the guy - he must've been begging for it. Not worth it, though. You'd have a lot of smackin' to do, since there seems to be plenty of those kind of folks around. Not exactly the sharpest knives in the drawer, to be sure. Some people just want to believe the worst about anyone - that someone would 'fake' an illness for attention. Maybe they're projecting their own tendencies? (Wait...that's just a little too Freudian! :lol: ) Anyway, you showed great restraint. And, yes - venting and ranting is what we're here for! I'll tell you a short story. I have a handicapped parking permit. Most days I don't really need it (and then I don't park in those spots.) But on days when my leg is really bad, I'll park in a designated spot. Sometimes when I get in or out of the car, I'll see someone looking at me frowning. I'm sure they're wondering if I'm REALLY handicapped enough to deserve the permit. I feel this need to exaggerate my limp (it's bad enough on those days!) to justify myself! So who's nuts here...them or me? Hmmmm

    I loved the story about your son. I did Easter Baskets for my boys until they left home...long after the Bunny was 'outed' as Mom and Dad. As much fun for me as for them I think.

    Have a great holiday!

    Jody
    "If you trust Google more than you trust your doctor than maybe it's time to switch doctors."

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    Quarterhorsegal, there will unfortunately always be people who just don't "get it". I used to try to be understanding and educate people about "invisible" chronic illnesses, but it gets frustrating when it doesn't seem to make a dent in people's attitude. Anymore, when someone makes a comment like "you don't look sick", I usually just smile and say "Thank my makeup" or something similar. But sometimes it's a real effort to keep my patience. Your co-worker sounds like he is willfully oblivious to anyone's needs but his own, a total lack of empathy. You were nicer to him than I probably would have been.

    I like the story about your son and the Easter bunny. We never really did the "bunny" thing with our kids - growing up in a rural area, it would have been a little hard to convince them that rabbits laid eggs. Maybe the Easter Chicken, but they would never have fallen for the bunny.

    Happy Easter, everyone! I would wish Happy Spring too, but it's thirty degrees here. BRRR.

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    So sorry for the horrible comments, Quarterhorsegal.........

    Jodi - I love your story about who is crazier, people for doubting your disability, or us for feeling like we have to prove it............I'm sure we've all felt that way at some time or another.

    I do kind of the same thing as MaryCain - when people I know find out I have Lupus, they often say - "you seem so energetic - I would never guess". I always tell them I must be doing a good job, then, because my goal is not to appear sick, but healthy! And I emphasize that there is a lot I do "behind the scenes" to be able to try my best to stay this way.
    Missy

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    I know, some ppl can really be clueless. No one has told me that in awhile but I used to get it all the time. My ex boss, a principal, and her AWFUL assistant principal and one of the other teachers were making fun of my limp one day behind closed doors. Another teacher, who was so upset she stormed out, told me about it. I used to get angry, now I just figure God will send them whatever message he needs to for them to understand and have compassion. *I* sure have a lot more now, though I never knew I was lacking it.
    I used to own a pot-bellied pig. Cleanest and smartest pet I ever had. One easter he got out of the house and ate ALL the easter eggs I had hidden for my son. It was sad until we looked at his nose and mouth. all pink and blue and purple and yellow from the dyes! LOL love, Kathy

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    Hey Quarterhorsegal;

    If you have the opportunity to pick up a book entitled "But You Don't Look Sick"......my doctor and his partner wrote that book and it helped me so much. I have shared it with those people who I feel genuinely don't know how to respond and are afraid to ask. It has helped me and them immensely.

    The reactions, stares, cruel and uncaring statements don't bother me any more. I've seen the "what goes around - comes around fairy at work"...unfortunately, that's the only way some people learn.

    Keep your heart protected and know that your kindness shines a far brighter light and has a much longer lasting impression than the "bozo" without a clue.

    I consider this place such a wonderful place to come vent, share, catch up on "old' friends.....I LOVE IT HERE, SO VERY MUCH.

    Take care of your heart, let God keep you in all safe places....and most of all I pray for you peace - that this journey you and I are on is not for the lighthearted - nor for sissies - so we lay our armour down at the end of the day....and put on our suits of love, encouragement, determination, compassion....and we carry our briefcases loaded with God's promises:

    Take care friend,
    Much love
    Browneyedgirl
    "I believe that friends are quiet angels who lift us to our feet when our wings have trouble remembering how to fly." - unknown

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    And the BEST of God's promises? That He won't send us anything that we cannot handle if we count on Him. (I just wish He didn't have so much FAITH in ME! Love, Kathy

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    Well...There are days when I just want to hit my husbands Exwife....She always tells her girls (my step daughters) well I dont understand why she feels so bad...Lupus is only Arthritis.....and she should be able to go outside all the time and play with ya'll and do all the activities the rest of the family does.....GRRRRRRRRRRRRRRRRR....I get so insensed with her ...Anyway...just wanted to vent....There are so many people that just dont get it....My family (cousins mostly) are having a hard time dealing with this....Any advise??? GOD BLESS you all!!

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    Hi Msdawnie,

    I know Saysusie, Marycain and so many others will pop in to respond to you.
    I think I speak for all of us when I say that we have ALL been on the receiving end of criticism, judgment calls, snickers, etc. It's not easy for people to understand this debilitating disease and how it affects everyone differently. I've cried many tears, having heard the comments "oh, so your sick again.....now what is it?" I know too well how you feel. You've made a wise decision coming to this wonderful site; I think Saysusie and those who brought this "idea" to a reality - fully understood that surely she wasn't the only one who has suffered so tremendously - and she stepped out in faith knowing that God would pour out His blessings on this site - because it was developed with love as the foundation of it's core.

    The most important thing that I would share with you is this - YOU MUST ABOVE ALL ELSE - TAKE VERY GOOD CARE OF YOURSELF - YOUR HEART - YOUR EMOTIONS - AND YOUR DREAMS. Noone....and I mean noone will do that for you. You have a huge support system of brothers and sisters here who have walked and blazed this journey ahead of you and me. Listen to the wisdom and the encouraging words of those here who completely understand how you're feeling. We all need to know where it's safe to vent, cry, and seek help.

    With all of my heart, I want for you to know how precious you are - and God has a plan and a purpose for your life. Be mindful of the people you surround yourself with - explain to your friends and family that Lupus is one of the most complex diseases to treat. It's not curable, but can be managed - symptoms can range from mild to life-threateneing.....that your being out in the sun, is like someone else holding their hand on the burner of a stove - would they do it? of course not, because they know what will happen - just as you know what happens when you're out in the sun. I know it can be frustrating - my doctor wrote a book called "But You Don't Look Sick" that I have shared with my family and my friends. It was worth the money - it educated them to understand how this "invisible" disease affects our bodies...and that this isn't just "all in our heads".

    Well, enough of my little commentary - just hang in there friend. You are welcome here any time - lay your burdens down when it becomes too much to bear - and you will always find a friend here to help you through.

    Take very good care of your heart, your head and your body.

    Much love,
    Browneyedgirl
    "I believe that friends are quiet angels who lift us to our feet when our wings have trouble remembering how to fly." - unknown

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    Browniegirl,

    Thank you so much for inspiring words and thoughtfulness. I know God will look out for me....Now I need to learn patience and control of my emotions. My husband and I are just coming to grips with this disease..being that I was just diagnosed 2 months ago and just started the Plaquinil...and have not really seen much of a change. So far I still have mild to severe fatigue, pain, stomach problems (colon mainly)...look like I am 6 months pregnant half the time.....Just got off the pred....so my mood is getting better.....one more rant and I will quit griping...It seems that the Lupus is affecting my brain pretty baddly....I feel like I have Alzheimer’s half the time....but my husband and I learning to deal with it...he reminds me of things when I forget and helps me find things when I cant find them...and the best thing We joke about it...makes it easier to deal with. Ok...I think I am done with my pity party now...lol ainting: I hope you are feeling good and life is treating you well.......God Bless you!!! I will try to find the book you mentioned...do you think Barnes and Noble will have it?? Anyway....God Bless and Take Care...Dawn


    We are only here for a short time lets recognize our blessings and life will seem much better.

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