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Quarterhorsegal
04-07-2007, 09:25 AM
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.

mnjodette
04-07-2007, 11:07 AM
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

MARYCAIN
04-07-2007, 11:35 AM
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.

Missy
04-07-2007, 11:55 AM
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.

littlered
04-07-2007, 01:47 PM
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

browneyedgirl53
04-07-2007, 09:50 PM
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

littlered
04-08-2007, 06:30 AM
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

msdawnie44
04-10-2007, 02:56 PM
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 :mad: ...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!! :)

browneyedgirl53
04-10-2007, 10:01 PM
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

msdawnie44
04-11-2007, 07:02 AM
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 :painting: 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.

Pretti in Pink
04-11-2007, 03:39 PM
I agree with everyone regarding the "you don't look sick response" but fortunately I haven't gotten in a demeaning way, just more on the end of you look well to have gone through so much.

But to add to that, does or has anyone ever had those moments where you questioned yourself as to whether you really feel this bad or are you getting lazy? I know it may sound crazy but because people always tell you how well you look it begins can make one second guess themselves even though you know how you feel. It's like I want to get out of bed but just the thought sometimes even makes me tired, so I plan a time to get up, that time goes by and a I plan another time, etc. Has anyone ever felt this way before?

Quarterhorsegal
04-11-2007, 06:36 PM
yep, I can relate. I have those days when it is just so hard to get moving because I am soooo tired or just hurt. But, I start to question if I am really THAT tired, or if I am just justifying not getting going on my day. I am the same way with brain fog. For example, just this week I needed to fax a document, but could not figure out how to send the fax. I knew it was simple, but could not do it. One of my technitions helped me out by pushing the button that said 'fax' on it. DUH! So then I question if it is lupus, or if I am justifying natural absent mindedness. Part of it is that I have dismissed so many things for so long. Those little ulcers in my mouth, I must have eaten something rough. Pleurasy, that always happens when I get stressed, just need to settle down. Rash on face, well, I got a bit too much sun. Headache, again, well there is that dork at work that I have to deal with, who wouldn't have a headache? So, now I have a 'real' reason to experience these things, but it seems like after a while, that - not everything can be caused by lupus, and that I am just creating symptoms in my own mind. Yes, I definately question or second guess myself.
Along these same lines though, how do ya'all communicate these things to your doctor? I feel like a whiner, and a bit stupid, if I go in saying I hurt, and I am tired, I have a headache, and I cannot fax stuff. I definately communicate with doctors better on a professional level than as a patient.

mnjodette
04-12-2007, 07:17 PM
Second guessing ourselves must just come with the territory (the lupus territory!) It's such a 'hidden' disease in so many ways, it's easy to see how people would wonder whether or not you're really sick. And then it's easy to see why that would make us question our own feelings. The other thing that I always ask myself is: do I feel lousy now because of the lupus, or because of all of the medications that I'm on? When I get that mid-morning or mid-afternoon slump that sucks the life out of me, is that the meds? The disease?

I feel silly, too, Quarterhorsegal, telling my doctor about some of the stuff that bothers me. I always go in with a list of things, and I end up sharing about half - I'm too embarrassed to share things that feel like minor complaints. But all those minor complaints add up! I told my husband just today (I had a good day!) that I felt 'smart' today for the first time a while. I really did some good work on a very big grant project, and had meetings with people and felt like I had a lot to contribute for a change. It could all change when I wake up tomorrow, but it felt good to have a day like that. I'd love about a year of them!

MARYCAIN
04-12-2007, 07:34 PM
Laura, your story about the fax reminds me of myself - A couple of days ago, I put a cup of water in the microwave to fix tea, and sat there for about five minutes waiting for the timer to go off before I realized i hadn't pushed Start. Duh! I never know if it's the lupus, or if I'm just getting absent-minded in my old age. When I really feel bad is trying to help the kids with the homework, and realizing that things I could have done in my sleep six years ago, like long division, are incredibly hard now. It's mostly trivial things, and I would feel silly bringing them up to my doctor - but it really does affect how I feel about myself. I've always been competent - the kind of person who could juggle twenty projects at once and never miss a detail - and it's really hard to accept that that person may be gone forever.

Missy
04-14-2007, 09:18 AM
I did that with my teapot the other day, Marycain! And I definitely can't blame old age yet, as I'm only turning 30 in a few months (unless this is a turning point I don't know about!! :lol: )

I do often say to my docs, "I don't know if this is connected to Lupus, but I have this.........." You know, it always seems like those nasty rashes or pains or whatever that seem to linger magically clear up on the day of the doctor's visit!!! Life's joke on me?? Maybe!!!

I do think there is a danger in having a chronic illness that has affected your health so much. What I mean is that I think any symptom I have is looked at through the Lupus-lense. I sometimes worry that if something else came up that wasn't Lupus related, it might not be caught or looked at as seriously, because we are so busy focusing on Lupus - stuff. I don't know if that makes sense, or if it's just my worry/perception.

MARYCAIN
04-14-2007, 10:47 AM
No, Missy ,you are very right to worry about that - because it was exactly that viewpoint (from my doctors) that almost killed me and left me not able to walk anymore. My doctors blamed my excruciating back pain, high sed rate and c-reactive protein, and fever on a lupus flare, and pain from osteoporotic fractures - and completely missed an infection in my spine until it almost killed me. I was in the ICU for almost a month and had two major surgeries on my spine, spent two months in the hospital on intravenous antibiotics, and then spent five months in rehab learning how to take care of myself and my kids from a wheelchair. All from an infection that could have been treated with IV antibiotics if it had been caught and treated before it spread. I knew there was something wrong - more than just a flare - but I couldn't get my doctors to look past the lupus, and they just kept giving me more painkillers to deal with the pain. Doctors make mistakes - even the best ones - so we have to insist that they look at other reasons before they blame all our symptoms on lupus. That's a lesson I learned the hard way - and I don't want anyone else to ever go through something like that.

browneyedgirl53
04-14-2007, 03:02 PM
Marycain, you inspire me so very much. Sharing your experience brought back memories of all the "trials and errors" of my ordeal a couple of years ago. All that you have been through - and still - you continue to serve as a mentor, a teacher, a cheerleader....and our best friend. How blessed we all are that you choose to be here everyday. I think God knew that we would all need you here.

Thanks for sharing, for caring and living with such great dignity. You are amazing - our very own SUPERWOMAN !

Much love to you,
Browneyedgirl

MARYCAIN
04-14-2007, 04:29 PM
Browneyedgirl, thank you for those very kind words, but I am definitely no superwoman, although it would be nice to leap tall buildings with a single bound. However, I would settle for the x-ray vision, so I could see what the boys are up to in the playroom while I'm in the kitchen. I think most moms would love that particular gift! Seriously, I'm not any braver than anyone else here, we all deal with our own burdens, And I'm extraordinarily lucky - I have a job that can be done sitting just as easily as standing, coworkers who have known me for years and don't let the changes in my life change our friendship and respect, a handy bunch of brothers who can fix anything to make it wheelchair accessible (you should see my kitchen), sisters and cousins who are always available to help out in a pinch, and lively boys who don't really pay attention to the chair. Plus a very loving and special guy. So what happened may have changed my life, but it didn't ruin it - not by a long shot. And unlike people with permanent spinal cord injuries, like Brent (Ganesha), I have the hope that my injuries are not irreversible. I am not brave - just blessed.

Pretti in Pink
04-14-2007, 08:14 PM
Marycain,

I echo broweyedgirl's sentiments and you are not just blessed but huble as well, which makes you much more a beutiful soul. Keep allowing GOD to use you to bless others and you will keep receiving your blessings

IloveHistory
04-14-2007, 11:08 PM
Hi!

Marycain: I, too, echo BrownEyedGirl and Pretti in Pink's sentiments. You are truly a gift from God and we are so lucky to have you here!

Keep well! :)

Saysusie
04-15-2007, 12:14 PM
DITTO, DITTO, DITTO............ But you know how I feel Marycain :D

Much Love
Saysusie

P.S. Browneyed Girl...You are a treasure yourself!!

mnjodette
04-16-2007, 12:04 AM
I'm inspired daily by so many of you on this forum. It's been eye opening for me to see such dignity and grace shown in the face of such adversity. Browneyedgirl, you are always ready to find the 'silver lining' and seek out the good in those around you - something I can certainly learn from. Beautifulbeluga, you have such an open and caring heart, I always find a little 'room to grow' when I read your posts. Saysusie, you are at the core of what we come here for - strength, empathy, encouragement, and hope. And, Marycain - what can I say that hasn't been said here? You take the time to make each post an important message for the person who really needs your words. It may be well researched information, it may be a story from your own life, or it may just be words to shore us up - help us over the latest hurdle. I've learned so much from you. (I have many of your posts saved so I can find them easily!) You really ARE a blessing - as are all of you. I thank God often for finding a 'home' here.

Jody

littlered
04-17-2007, 09:14 AM
My reply to the children who repeat what stepmom says, re: She isn't all that sick, it's just a little arthritis:
"Sweeties, she just doesn't understand Lupus. Tell her to visit the official Lupus site if she really wants to know about it."

msdawnie44
04-19-2007, 06:43 AM
Well...we have told her that...but since that would benefit her..she has not done that. So....I have opted just to ignore her and try not to sweat the small stuff...and realize where it is coming from. Since stress is a catalyst to Lupus....she can just kiss my booty!!! LOL :angel: Anyway....after having spent a day at the hospital 2 days ago....for bronchitus/walking pneumonia......life is was to short........But I am feeling much better...Hope everyone is doing well!! GOD BLESS...Dawn