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stardust
09-25-2006, 11:08 AM
Started off feeling so-so; not sure what was happening, but knew SOMETHING was !!!

We were expecting company from out os state for 4 days. I absolutely LOVE having people visit, so I super clean the house, make great meals.
(I love to cook) have all these little "things to do" activities lined up, ready to visit!! they were leaving Ohio Thurs, coming in Fri. So, they were on their way.

Well, Thur. morning I woke up
with this terrible pain in my back, under my lung. I could hardly take a breath in, it hurt so bad. My husband convinced me to go to the Dr. and I ended up in the hospital till Sunday with 'walking pnemonia" .


SUCH a bummer !!!!
It so amazes me how quickly we can become sick, I had been feeling so well for the last month or so.

My Dr. says ANY stress can kick up a flare; even HAPPY stress. and then lupus people end up so much sicker than most people.

Plus, I felt really bad for my company because they were so hesitant to come to begin with because they know how my health varies, but I kept assuring them how well I was feeling and how much I wanted them to visit.

I hate this!!! anytime someone wants to do something, everyone is so afraid "it might make me sick!!!!!! and as hard as I try NOT TO, it happens anyway !!!

And then eveeryone thinks of me in this pathetic way!!, which i also hate.
And no-one really understands this illness so trying to explain it only confuses people more, howone day you can feel GREAT and the next :cry: :cry: :cry:

Maybe, I'm just being paronoid but... I CAN'T stand people looking at me with such pity!!!!!!!

And of course, now that my company has left, I'm all better :mad: :mad:

well, that,s my venting for now.

Saysusie
09-25-2006, 11:50 AM
There is such a fine line between pity and understanding. We DO NOT want pity, we just want everyone to understand that..Yes, we can fell like Tarzan today and feel like we are on death's door tomorrow. It is, unfortunately, the nature of our disease that even "Happy Stress" can send us spiraling down!!
And, of course, now that the stress is over, you feel ok!!
I wish that I had some good suggestions for you, but since Lupus is soooo unpredictable, who knows what will and what will not cause us to flare.
I am so sorry that you were unable to enjoy your guests visit, especially afteryou had been looking foward to it so much!!
Do you think you might have overworked yourself cleaning your house and preparing?? I have done that to myself several times and ended up flat on my back in bed during the entire time that my guests were visiting!!
It is quite all right to vent here because we all truly understand and have been there ourselves. But, I am happy that you are feeling better (a little ray of sunshine in this entire event, at least!)
I hope you continue to feel well and I hope that your guests will be willing to come back and visit again!!

Peace and Blessings
Saysusie

littlered
09-26-2006, 09:46 AM
sometimes I go out in the backyard, sit down, grab a throw pillow and scream into it. Yeh, the dogs look at me funny, but who are they gonna tell? And believe it or not, I feel better afterwards.
(Never told anybody this before :oops:

beautifulbeluga
09-26-2006, 11:02 AM
I am so sorry that you ended up with a flare and missed the fun you were looking forward to with your friends. It's exhausting isn't it trying to get and stay well and still failing. Where is our control over this disease? I would like to say something or do something my friend to make it all better but there isn't anything except to say I understand. Take care of you. Sending you hugs, hugs and more hugs.

kheppner
09-26-2006, 12:05 PM
Know your pain, I am the mother of two small children so we makes plans to do fun stuff and I get sick. That always pisses me off, these little girls have asked nothing of me and I can't even give them one day out, pain free. Then they look at you and don't understand but its not that they are mad.. they really just don't understand. My parents come in and I lay on the couch. I feel worthless. but some who I am well enough to work.. Sorry this kinda started to wander off... I know your pain
Karen

MARYCAIN
09-26-2006, 04:25 PM
I've given up trying to plan things in advance - when I feel good, I do fun things with the kids on the spur of the moment, when I don't feel so good, they are pretty able to entertain themselves. They are basically okay with it because they do get to do the fun things, plus I have a BIG family so there is always something going on, and they have dozens of cousins, aunts, uncles to take them to the amusement park or zoo or swimming pool - all the outdoor things. When I cook, I do it in quantity, and freeze the extras for the days when I don't feel like cooking. As for housecleaning, the days of scrubbing the house from top to bottom are OVER! I comfort myself with all the medical research that says kids are actually healthier when exposed to a little dirt - so far it seems to be working, my kids hardly ever get sick!

I also enjoy company, but I warn my friends that it's a day-to-day thing with lupus - they might get a gourmet meal or a take-out pizza. I figure my true friends won't care and the other folks I can live without.

browneyedgirl53
09-26-2006, 08:15 PM
Oh Littlered,

Well, now you know you're in good company; and that we've all had the same experiences. I know exactly what you're talking about when you expressed frustration about not wanting pity and knowing that others just don't "get it", because WE look fine - but we feel like we got hit by a freight train and then it hit us coming back !!!

As others have mentioned, I have stubbornly learned to live my life day to day; and those days of making plans for the future - well, those plans are for someone else. Having been an executive secretary and being on the road, corporate planning, etc. - it is so frustrating to find myself not "in control" of this disease!!!

As I struggled with not being able to work; I suddenly realized one day that all things happen for a reason, or for a season. For the first time in my life, I'm learning that the people who love me....love me when my house is not "spotless"; love me when I have to cancel at the "last minute"; and I've learned that not living your life going from 0 to 100 in less than an hour is pretty good actually, sometimes surrender is a good thing. I have surrendered my "self-imposed" expectations for moments of gratitude - I'm grateful that I'm still breathing; that today I can still move; that life doesn't have to be about "the race" to be perfect or popular; or keeping up with what others think I should do....but life is lived by moments that matter most. I now appreciate that I have more time to call my mom - to say "I love you, mom" - to take time and tell my best friend all the things I appreciate about her....and that I can actually sit in one place long enough to read more than one paragraph !!!!....and finally, that asking "why"....never brings an answer or solution for our disease; but I do accept there are days that all I want to do is cry because I hurt so bad; days when I'm too tired to move....and the celebrate those days when I feel like in my heart I can fly :)

Hang in there friend, hold on to hope and know that we all care and are here to stand beside you when you're too tired !!

Much love,
Browneyedgirl

I used to think that saying "take time to smell the roses" was hooey; but now that I have roses and have learned to garden; I realize that as I am weeding my garden - we also need to do the same in our lives. I discovered that when you water and feed the plants - you don't see immediate growth or changes....but you do it with the faith that it takes to keep doing it.....and one day when you walk out in the garden......there it is, the first bud, and then the blossom.....and then the rose !! So, as you can tell, I've turned that energy of frustration into a passion for gardening....and I continue to find life lessons in my garden :)

Vent on sister, we all have those days...and thank God, those days do pass.

Take heart friend, we all understand the

browneyedgirl53
09-26-2006, 08:21 PM
ooooooops, so sorry ...that long babbling message was for stardust and I guess whoever else....my apologies. I think it's time to call it a day.

Later,
Browneyedgirl

littlered
09-27-2006, 08:14 AM
My fave saying: People who come to see the house can just go home. People who come to see ME won't worry about the clutter, and have never said, "Gee Id have had a GREAT time if only you'd cleaned behind the refrigerator!" :lol:

psalm 56 3
09-30-2006, 12:50 PM
I usually host a large Christmas party in my home. It will take me a week to get the house ready. Then there is all the food that has to be prepared. By the time the party rolls around I am completely exhausted. I have looked back at the pictures and every year it is the same thing, I look old and beat. I tell myself every year this is the last one. I do realize that all the physical work sets me back but I had never thought about "Happy Stress". That is a new one for me. I think that is what I love the most about this site. We all share the common thread of Lupus and there is so much insight to be given.

Lula2ya
09-30-2006, 04:37 PM
I know just how you feel. I am afraid to make any type of 'plans' anymore. I get concerned that I come off as a flake to people but I try not to think about that too much. As for the house, when I feel ok I'll pick just one room or one thing to clean. Then that's it I'm done and no one is complaining. I pay someone to come in 1 day a month to clean top to bottom. I really can't afford her but I feel better if I know it will get deep cleaned. Hope you are feeling better.

stardust
10-01-2006, 06:35 AM
this is me,

something must be wrong with my profile set-up.

I'm not getting the e-mail notifications when someone posts a reply from on of my topics, even though I have checked the box to do so.

So, if I have not thanked you all for your replies, it's because I just today looked at these.

Maybe one of the administators can tell me if I set something up wrong??????

thanks