What a beautiful thought! You made me smile. Thanks!

Know what I would do? I would sit on a beach and bask in full sunlight!

Woohoo!
Ladybrannon :p

Dear lady,

i made that mistake a little over a year ago. I went to myrtle beach and it was the first time I had ever seen the ocean. I was in heaven for 4 wonderful hours. However, I suffered the consequences for 3-1/2 months after that.

Does anyone ever have a hard time explaining to others why we can't be in the sun? When I say I can't do something because of the sun issue, I get strange looks and blank stares. When we lived in texas we had five acres to take care of, in west texas to boot. Very dry heat. My doctor about had a fit when he found out I was mowing and building fence and ect.... I didn't understand why at first. But I found out real quick. Not only do we have to worry about skin cancer, but nothing-and I mean nothing will drain you of your energy faster! I learned the hard way! I was born a farm girl in east texas and I love to be out side in the sun. Marrying a navy man, i've spent most of my married life in the tropics. Calif.-guam-hawaii-and florida. Every thing involves the sun. Oh well....Thank god my grandmother taught me how to quilt! I'm not able to do much hand quilting but i'm getting good with a machine. A neighbor of ours will comment to me when I do venture out that she hasn't seen me for awhile.
Sometimes I don't go outside for several days. But I look out of my windows alot. We can adjust when we have to.

Yeppers. I do get strange looks. It is one of those things that I have accepted. Everyone thinks a 29 year old wants to vacation at the beach. Well, I don't. And people think it is okay to ask you every nosy question under the sun! Irritates me! I don't go around asking them what their issues are...You know?

Also, I get really bad rashes, headaches, etc from the fluorescent lights. I mean bad. Wal-mart & barnes and noble, where I live, are the worse! I cannot stay in b&n for more than 20 minutes without my face becoming completely rashed and abnormal looking. I also get the sweats. So now, everyone is looking at me like I have the bubonic plague and they are going to get it too.

So, know what I did, I complained to the managers. Yep, I told them that there were millions of people like me and their uncovered fluorescent lights make shopping in their stores painful for me, literally!

Anyone else hate to shop in certain stores because of this?
Lady brannon

That clears up some things for me! I hate to go shopping in walmart. I always have problems in there, but wasn't sure why. I get really hot and feel lite-headed. I feel sick at my stomach if i'm in there very long. One time in texas I was christmas shopping and ran into my pastors wife, while talking to her I started feeling like I was going to pass out! I don't remember what I said to her, but I left in a big hurry! I always thought it was my claustrophobia. Also I cann't stand florescent lighting. My husband was an electriction in the navy and he insists that we have it in our home. Everywhere! It has been a big issue with us for years. Now I know why. I'll let him know why it bothers me so much. Maybe now he will ease up on our (on going battle ) over lighting. Thanks for the information. :d oh yes, one more thing I let my husband do most of the shopping because of this. He dosen't mind, thank god! Sams is worse than walmart for me.We go there once a month and I feel sick just thinking about it I let him go by himself this month but he gets carried away in there.He rides in a wheel chair so it's not as hard on him as it is me. God bless you,

sharon

I'm glad to see you are taking good care of your mother-inlaw. I have two daughter-inlaws. I love them both very much the eldest of the two is the only one who understands that I have an illness. That includes both my sons their dad has a serious illness and has been sick since '89. I know they love me but they don't acknowledge that I have anything wrong with me. i'm not sure why, but it bothers me. Oh well life goes on. Yoo keep taking good care of your mother-inlaw. I know she must appreciate all you do for her.

god bless you

sharon

There seems to be a lot of people who have people in their lives that think nothing is wrong with them.

This is unfortunate, but not anything you can change. They have the right to their opinion. I try not to dwell on people like that. Although, when it is a parent, that is almost impossible!

You know sometimes you need to talk about that. This is a great place to do that. Get it all out!

i wish all of you who deal with this the best. I, fortunately, have not dealt with that on a large scale. My parents and parents-in-law are very supportive.

*hugs*
ladybrannon

It is a real shame that people think your not sick or feeling ill with pain because when they see that you try to live life as if you weren't hurting like hell and complaining constantly. Life goes on and we have to make the best of it, no matter how bad we feel. I my self have also been plagued by excruciating neck and head pain for the past 3 years, and after complaining to the doctors for the first 9 months (they thought I had fibromyalgia, but I don't and never did, I was misdiagnosed I have another post misdiagnose with fibromyalgia to explain in detailed outline) I had a stroke that has chemically changed my body. I am now allergic to narcotic pain killers, migraine meds don't work. At any rate on less I complain of my head or neck my family thinks I am cured, with the exception of my mother-in-law and my best friend.

So even though it is not lupus I do understand all your frustrations. I really do and I empathize with each of you every day.

Please say a prayer for me that my neuro-surgeon has found my problem and can resolve it at my meeting with him on wednesday.

(p.S. I have a bone spur pressing the nerves and my arteries which caused my stroke and now that the pain has returned back into my arms, hands and legs he feels he may be able to remove the spur and possibly eliminate the head and neck pain. I get my mri and ct results this week)
thanks for listening.

Hi again, I will be praying for you! I had something happen to me in texas that never did get explained to my satisfaction. I was sitting out on my porch one day doing crafts. I noticed my hands and legs felt strainge. I tried to get up and I could not! It scared me , I sat there untill my husband returned from the store . By then I knew something wasn't right. I went to the emerg. I had no feeling on my left side, ( from my forehead down to my toes ). They ran all the usual test and found nothing! After a while I was fine. A few days later same thing. Another trip to the emerg. I could not feel anything in both legs. My reg. Doctor was out of town and the doctor they called in did not believe me. One minute I was laying down on the bed and then boom! He jerks me up on my feet and lets go! I fell down, he was very lucky he caught me before I hit the floor. I was so....Mad I could have hit him if I could have reached him. I managed to leave the hospital after a few hours . I waited til my next appointment to talk to my doctor about it. I realized only after a few words that she didn't know anything about it. I told her what happened and I thought she was going to flip her lid! She excused herself for a few minutes ,and when she returned she told me I would not have to worry about doctor again! After more test nothing was showing up. A few months went by no more problems. Then one night while I was sleeping, I had somthing explode inside my head on the right side. I tried to wake my husband up but couldn't. I don't remember exactly how I did it, but I got the phone and called a dear friend of mine to pray for me. He said later that he could not understand what I was saying my speach was slured. I think he must have called 911 because they called my phone I could not talk at all by then. I guess the ringing of the phone woke my husband up so he talked to them. They sent rescue for me and back to the hospital I go! They admit me for more test and ruled out anormal stroke. My nero. And my rheu. Said it was a lupas stroke. Which is deeper in the brain and would not show up on the test they ran. Since then I have had some numbness on my left side. More than normal for lupus. I can't lay on my left side for more than a few minutes at a time. That incident scared me more than any thing else! I'm not able to sit for more than a few minutes at a time. I've stopped going to church because I feel that i'm interupting the service by getting up and down so much! I miss going a lot! I know in my heart that god understands, but I still feel bad. I've started recently having problems with my short term memory. That scares me alot also. Anyone else having similar problems

sharon

Wow, what an aweful feeling that the doctor didn't beleive you, I have been there for 3 years.
Did you ever think of going and talking to your pastor, minister or priest and explain you health problem and take a seat in the back where it is not so noticable that your up and down constantly. This way no attention is drawn to you unwantingly.
I lucked out with this neuro-surgeon. He came along when I had my stroke and told my neurologist that he misdiagnosed me and that I do not have fibromyalgia. Problem was he left canada to go to the u.S. But has recently returned to his old practice and that is how I got back to him.
I wish you luck and support if you need it. Feel free to email me if you would like.