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Old 07-03-2007, 10:24 PM   #1
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Join Date: Jul 2007
Location: Monroe,Louisiana, Ouachita Parish
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Trisha42 HB User
Smile Lupus

Hi, I have lupus and feel bad most of the time with fatique, hurting all over and right now I have an bad ear infection. Sometimes I feel like no one understands me and I also get depressed. I try to do things that occupy my mind but it's so hard to do. Why is it that I hurt more all over when I get sick? I have notice a trend in this. I am having a very hard time with my lupus and it seems like my Husband really don't understand me at times. I just don't know how to handle myself when my Lupus starts acting up. I love the outdoors but now I have to be careful being in the sun. Does any one feel the way I do with having Lupus?

 
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Old 07-04-2007, 07:50 AM   #2
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Location: cleveland,ohio,us
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mamavv HB User
Cool Re: Lupus

Hi lupie, yes you are not by yourself. I feel the same way that you do. I was diagnosed in late march of this year and I'm still trying to keep my head on straight. I'm a single mother and grandmother at the age of 48 and I am the only one who brings home the bacon. Don't know what to do cause I haven't been back to work since. My job has already posted my position and everything is so scary. The pain is crazy. It comes and goes where it wants to, I hate taking the prednisone and placquinil and the vicodin and trying to act normal everyday. I'm trying to deal with the depression part by myself. No doctor, no medicine. I know that God will keep my mind on track because he gave me a beautiful,smart, loving daughter to raise to raise who is now 14 years old, and a great grandson (11yrs)to raise who is all boy if you know what i mean. I have to stay sharp. So do you honey. There are people out there much worse off than us doing great things. We can handle this. Don't be afraid to cry. It really helps. It seems like after a good cry, you can focus.Can't stress enough how much prayer works in our favor. Don't get me wrong, I'm am still scared to death about how much worse this disease might get but I do know that if you don't build your hope on a good foundation, you are gonna fall down. Keep your head up and let God and the doctors he has blessed do their work. Happy 4th of July!!! and don't forget your sunblock!!

 
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Old 07-04-2007, 08:26 AM   #3
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Join Date: Apr 2005
Location: TX
Posts: 331
ErinS64 HB User
Re: Lupus

Trisha,

You are so not alone... This is a hard disease to understand for those that don't have it. While your family may be sympothetic to your condition, they will never quite get the impact it has on you. I can't tell you how many times my family has told me if I would get outside and get in the sun or go walking it would help me. First off the sun would make me much sicker since I am very sensitive to the sun and second, I have days where walking from my room to the bathroom is very difficult for me. But that tells you how little they understand since I have told them countless times when everyone else is going swimming that I can't.

I have had a couple of bouts where I really broke out bad. I mean children pointing at me bad. They were more sympathic to that then when I am hurting so bad I would just like to cry my eyes out. But they cant see the pain of my body. The rash was very obvious.

Even your doctors can sometimes not get how bad it is. I think my doctor finally got it when I had the shingles. They hurt like hell but I went to work every day and went on every day like I had. I took minimum pain medication (I will only allow myself to take 1-2 vicodin max a day, if I cant get out of pain then I take baths and if I still am hurting bad...well I am just goint to hurt) He had seen this too when I fractures 3 ribs coughing, but he actually told me that day that I was very tough. He had had shingles you see and knew exactly how bad they hurt. So he could empathise more and actually knew that when I said I was hurting bad, that even though I got up and went to work every day, it did NOT mean I was not in alot of pain. It just meant that I would keep pushing myself. I told him I had given birth 4 times and 3 of the 4 were 18hours plus of labor. Of the 3 I had a minimum of 12 hours of labor with no pain medication. I had also had TMJ from hell which resulted in both joints having to be completely replaced surgically. Pain is relative and it is a matter of what you get use to.

When I am really bad, they are supportive. But one most days, I am in the middle if you know what I mean. Those are the days that wear on you. Those are also the days that you have to keep going like you are fine. I work full time and am a single mom. My 22 year old daughter lives with me and her 1 year old daughter and to this day I think she has actually offered to make dinner 1 time and I ended up on there showing her what to do and basicly doing it.

The only thing I can offer is every day when I close my eyes I pray that the next day will be better. I start every day with the hope and prayer that it will be better. I have learned to say no when I need to and when to say when and just stop. When my family doesn't hear me say stop or no, I say it again. If they still don't I have no problem repeating it louder till they do. No one who doesnt live with chronic pain will understand it fully. So the only thing you can do is be true to yourself and know you are doing all you can do.

I will tell you one thing that I do that really helps. On really bad days, I am a hoot. I will joke around ALOT...Laugh at myself and really cut up alot at work. My boss has caught on that I do this. But the fact is when you laugh and cut up it helps more than the strongest pain medication in the world. For that minute, you dont hurt. For that minute, you are happy and for that minute you can take anything your body dishes out!!!

My boss can tell by looking in my eyes the minute he comes in how I am doing. He said that tells him exactly what he is in for and to prepare himself for my being crazy!! I love my boss and my job and feel God put them there for me to compensate for the difficulty I have.

Erin
Dallas TX

 
Old 07-04-2007, 08:31 AM   #4
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Join Date: Jul 2007
Location: London
Posts: 8
Cortez HB User
Re: Lupus

Quote:
Originally Posted by Trisha42 View Post
Hi, I have lupus and feel bad most of the time with fatique, hurting all over and right now I have an bad ear infection. Sometimes I feel like no one understands me and I also get depressed. I try to do things that occupy my mind but it's so hard to do. Why is it that I hurt more all over when I get sick? I have notice a trend in this. I am having a very hard time with my lupus and it seems like my Husband really don't understand me at times. I just don't know how to handle myself when my Lupus starts acting up. I love the outdoors but now I have to be careful being in the sun. Does any one feel the way I do with having Lupus?
Hey Trisha... My mum has Lupus... And she's the same way...
The doc's don't really know of any cure here... She's always tired and hurting, She has yellowish spots under her eyes too, If it weren't for the medication she takes... I think it'll be even more of a strain for her...

Take it easy and don't let it get to you....

 
Old 07-04-2007, 09:27 AM   #5
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Join Date: Jul 2007
Location: Monroe,Louisiana, Ouachita Parish
Posts: 5
Trisha42 HB User
Re: Lupus

Quote:
Originally Posted by mamavv View Post
Hi lupie, yes you are not by yourself. I feel the same way that you do. I was diagnosed in late march of this year and I'm still trying to keep my head on straight. I'm a single mother and grandmother at the age of 48 and I am the only one who brings home the bacon. Don't know what to do cause I haven't been back to work since. My job has already posted my position and everything is so scary. The pain is crazy. It comes and goes where it wants to, I hate taking the prednisone and placquinil and the vicodin and trying to act normal everyday. I'm trying to deal with the depression part by myself. No doctor, no medicine. I know that God will keep my mind on track because he gave me a beautiful,smart, loving daughter to raise to raise who is now 14 years old, and a great grandson (11yrs)to raise who is all boy if you know what i mean. I have to stay sharp. So do you honey. There are people out there much worse off than us doing great things. We can handle this. Don't be afraid to cry. It really helps. It seems like after a good cry, you can focus.Can't stress enough how much prayer works in our favor. Don't get me wrong, I'm am still scared to death about how much worse this disease might get but I do know that if you don't build your hope on a good foundation, you are gonna fall down. Keep your head up and let God and the doctors he has blessed do their work. Happy 4th of July!!! and don't forget your sunblock!!

BLESS YOU ALL FOR REPLYING BACK TO ME AND MAY GOD BE WITH YOU FOR YOUR ALL IN MY PRAYERS! NOW I DON'T FEEL SO ALL ALONE. MAMAW-I WILL BE THINKING OF YOU AND KEEPING YOU IN MY PRAYERS AS WELL. THIS DISEASE IS VERY ROUGH AND THERE IS NO KNOWN CURE FOR IT BUT WITH GOD ALL THINGS ARE POSSIBLE. I TAKE PREDISONE AND PLAQUINEL AND PAIN MEDICINE TOO! IT'S HARD FOR ME TO GET OUT AND WALK AND I TRY NOT TO GET IN THE SUN TOO MUCH BUT WHEN I START TO FEELING BETTER I GET RIGHT BACK IN THE SUN, CUTTING GRASS ON A RIDING LAWN MOWER-WHICH NOW THE DR. TOLD ME NOT TO BE DOING THAT ANYMORE OR GOING FISHING. IT'S HARD TO ENJOY LIFE AND CAN'T PLAN ANYTHING AHEAD FOR YOU DON'T KNOW HOW YOUR GOING TO FEEL. I TRY TO KEEP MY HEAD UP BUT IT'S HARD AND I START FEELING SORRY FOR MYSELF. I KNOW I SHOULDN'T DO THAT BUT THAT IS HOW THIS DISEASE MAKES YOU FEEL. I REALLY DO APPRECIATE YOU REPLYING BACK TO ME. E-MAIL ME ANYTIME
TRY TO HAVE A HAPPY FOURTH OF JULY!!!

 
Old 07-04-2007, 09:30 AM   #6
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Join Date: Jul 2007
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Trisha42 HB User
Re: Lupus

Thank You For Replying Back To Me For I Dont' Feel All Alone And It Helps Knowing That I'm Not By Myself With This Disease. May God Be With You And Your In My Prayer's Too!!! Have A Happy Fourth Of July!

 
Old 07-04-2007, 09:38 AM   #7
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Join Date: Jul 2007
Location: Monroe,Louisiana, Ouachita Parish
Posts: 5
Trisha42 HB User
Smile Re: Lupus

I Really Appreciate The Care Of Replying Back To Me. We All Have To Support One Another With This Disease And Just Reading What You All Have Wrote About Lupus I Don't Feel All Alone. I Just Want To Thank You For Your Kind Thoughtfulness. I Try To Remember God Won't Put More On Us Than We Can Handle. Write To Me Anytime, I Am Here For You Too! For We Share The Same Disease And It's Not Easy. I Feel Somewhat Better But Still Feel Weak And Hurt All Over. I Love You All And Take Care Of Yourselves!!
Sincerely,
Trish

 
Old 07-04-2007, 10:11 AM   #8
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Join Date: May 2003
Location: Virginia, USA
Posts: 2,354
BarbaraH HB UserBarbaraH HB UserBarbaraH HB UserBarbaraH HB User
Re: Lupus

Hi Trisha,

Sorry you're in this unwelcome boat, but you're SO not alone! I was diagnosed 8 years ago and am doing pretty well, all things considered.

I'm jumping in to say that when you feel good and go outside into the sunshine, you're asking to feel awful, awful, awful in the following days. It just doesn't work to pretend that life can go on exactly as before lupus.

What DOES work is life with a few modifications. If you feel good, put on SPF 45+ sunblock, a broad brim hat to keep the sun off of your head and neck, a long-sleeve cotton shirt (not a thin weave that the sun can get thru!), slacks to your ankles, socks and shoes. You may think you look like Nanook of the North, but the sunshine won't bother you. Plan you fishing trips and lawn mowing in the early or late part of the day and stay in the shade as much as possible. If your lawn is in the sun, someone else gets to mow it. It's that simple. You need to be indoors from about 11am to 4pm, or during the hottest part of the day where you live. As my doctor told me, don't plan a day at the beach or the pool. Sunshine makes all of the symptoms far worse. Sad, but true for us loopies.

Also, forgive yourself for what you cannot do. We didn't choose lupus or the aches, pains, and utter fatigue. All we can do proactively is to take our meds and take a few sunshine precautions so we don't make it worse, and then do what we can, when we can.

Wishing you well! Happy 4th! Barbara
__________________
Betty

Last edited by BarbaraH; 07-04-2007 at 10:12 AM.

 
Old 07-04-2007, 02:16 PM   #9
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Join Date: Jul 2007
Location: Monroe,Louisiana, Ouachita Parish
Posts: 5
Trisha42 HB User
Re: Lupus

Thank You Barbara For The Caring Advice And I Will Follow What You Said About Staying Out Of The Sun Between 11 And 4. I Am Sorry You Have Lupus Too And Glad That Your Dealing With Yours As To Be Expected. I'm Proud Of You! I Will Take Your Great Advice To Heart. I Am Feeling Much Better Knowing That I'm Not The Only One That Has It And That There Are Other's That Care Enough To Share Their Aches And Pains With Me. I Wish You Well Too And Have A Wonderful Fourth Of July!! May God Continue To Be With You And Other's Too!
Sincere Thanks,
Trish

 
Old 07-04-2007, 03:25 PM   #10
Senior Veteran
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Join Date: May 2003
Location: Virginia, USA
Posts: 2,354
BarbaraH HB UserBarbaraH HB UserBarbaraH HB UserBarbaraH HB User
Re: Lupus

Hi Trisha,

I hope these small measures will help you feel much better!

Laissez Les Bon Temps Roulez!!!

Cheers! Barbara
__________________
Betty

 
Old 07-05-2007, 07:38 AM   #11
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Cortez HB User
Re: Lupus

Hope you had a great 4th July Trisha...

Have a great day!

 
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