Weight in Lupus Patients

Hi lady brannon,
thankyou for you help. I would love to call you but I have no idea how to send you a private message... I must be stupid or what!!!! Let me know how to do that... Thanks... Hadley

Hi ladys, i'm not sure I spelled that right. I don't have my glasses on and can't get to them at the moment. I have over night guest. Please bare with me. Hadley I know you are having alot of trouble finding a doctor in your area. I don't know exactly how far you are from jax., but I know there are some good rheus. Here. My rheu. Has a office there and in yulee, fl. I see him in yulee because it's closer to me. He wants to send me to a lupus spec. At the mayo clinic in jax beach. He is very good I hear. Thats over an hours drive for me but it will be worth it if he can help me. If there is no way you can find a doctor there to help you I am willing to come pick you up and bring you to see a doctor in the jax. Area. No cost to you for the trip . Just say the word! Neither my husband or I work so time isn't a problem. I know you are having finance ( darn I can't see hardly what i'm writing!) I sure hpe you can read this. Anyway, where was i? Oh yea, the cost of meds are very high for you. If I can help you by bringing you to a good doctor, please let me do this for you. All of us here kow how hard this stupid diease can be to deal with. We need to stick togeather and do what we can for each other, weather it be with information, encourgement, a shoulder to cry on, or if and when possible even a ride to a doctor. We are all in this togeather! Lord I hope this is readable! Let me know if I can help.

sharon

Hi sharon,

thankyou for offering to take me. That was so kind of you, but I got the name of a good doctor over in palm harbor. My son said he would take me. I was going to call the mayo clinic in desperation. It was just a thought. Tomarrow i'm going to call that Dr. In palm harbor and see if I can get an appointment. If it dosen't pan out I just might take you up on your offer. Thankyou so much, you are such a kind sweet person. Yes, you are right, we do all have to stick together. I am so glad I met you and the other ladies. I will keep you posted. And, stay in touch with me... Thanks again... Hadley

You are so.... Welcome I go to my rhue. On the 16th.
I pray we both find the answers we need,god bless

sharon

To post me a private message:

go to the top right area on your screen.
See the "private messages" link? Click on it.

A new screen will appear. From there, tell it that you want to send a letter to ladybrannon. Write the message and then send it to me.

Hope this helps! :d

Hi sharon,
can you give me the name of that lupus specialist over at the mayo clinic. If he has an office in fl., then I can get there. Again, I thankyou for you help. It is sweet of you to want to take me. I might take you up on it some day. I have no friends around where I live. Most of my close friends have moved away, gone back to where they came from or just plain got an itch to see another place. My son or daughter can take me where I need to go. I am at my wits end with this pain .... If I sit in a chair for over an hour, I can not get up without the most horrible pain in my legs and hips. I recently had knee surgery that didn't really help, so what else is new... Ha ah...Ha.... But, i'm gonna give it some time. Sometimes it takes awhile to heal all the way. Do you get stiff and sore if you sit or lay down too long? Well, again, thankyou for your kindness and friendship... Thankyou lady brannon also for your kindness to me... Hope to hear from you soon... I wish there was a way for you girls to write me on my private email. If I can figure out how to send you private messages I will gladly give you my email address... Bye for now.... Hadley

Hi, sorry i'm just checking my mail. I had my g- babies for the weekend. Talking about being sore I could barely move this morning. Yes, I get very stiff and sore if I sit for more than a few minutes at a time. When I go to see a movie with my friend ,it's all I can do to even stand up. I have to stand for a few minutes before I even attempt to walk. Then it's very painfull!! I have quit going to church because I can't sit through a service. I miss it dearly. I will find out that doctors name for you when I go see my rhue. On the 16th . If you need it sooner let me know and i'll call and find out for you. My daughter-in-law lives only a few blocks from the mayo clinic. To send a private message you click on private message. It should be up at the top of your screen somewhere. I'll try to seen you my e-mail address now. Hopefully I can figure it out. Let me know if you get it
sharon

Hi sharon,
yes, I got your email address and I wrote you an email.. Thankyou... Let me know if you got my letter, and my email address... Ok... Thanks... Your friend, hadley

Hi hadley
since you live near tamap, florida, you should call the university of south florida medical center and ask if anyone knows of a good doctor in the area that treats lupus. They have a huge cancer center there and might possibly be able to help you. The university is known for it's medical school.
If they can't give you any help, I would think there would be someone in the tampa vincinity that treats lupus considering what a large city it is.
Bradenton is rather small so I can see why there isn't much choice there.
But then, good docs are really hard to find, aren't they?

About weight...
How are you supposed to lose any when it is impossible to exercise? I have tried it and it just isn't worth it. I have heard it would "help", but after having this wonderful disease for almost 18 years, I have given up. It is hard enough just to get my dishes and laundry done. I do work a few days a week, too, and that pretty much does it.
I have noticed, if I actually do exercises for certain body areas, they become even more inflamed and my pain gets much worse.
So, I have decided I would rather have the weight.
Do any of you do okay "exercising?" even if I could handle the aftermath of it, I just don't have enough energy to do it. And what energy I do have, I need to do things I have to do.

Try low impact exercising. I have found that water aerobics allows me to exercise with none of the jostling.

Hope this helps! Hugs,
ladybrannon

What info do you have to share? I think we could all benefit from hearing it.

Thanks,
ladybrannon

I gained 23 lbs in the last year. Well, since I was diagnosed. I think being in pain all the time and being in the house 12 hours a day and all the other problems lupus cause, well, there isnt much to enjoy in life so I tend to pig out on comfort foods. Then the other day the doctor told me to lose weight..........I was so irritated...........Comfort food is the only thing I enjoy. So I went to see my gastroenterologist and he said to get on the adkins diet until I lose 30 lbs. This is the best diet for lupus sense we cant always work out. Well, that's what he told me. Have you thought about that?

shawna

Shawna --

the atkins diet would be great for people who didn't have any organ involvement (kidneys, heart). Otherwise we would be horrible poster children for the diet.

I myself have kidney disfunction and so must be very careful about exactly how much protein I eat.

Have you considered pilates? Or yoga? There's very-low impact yoga that I took a couple of years ago that is not hard on the body especially when the body refuses to bend (literally). A good yogi (yoga instructor) will know what your limitations are within the first half-hour of the class. Also, if you tell them you have lupus they may know of things to help too.

Clarebear

Hey clarebear!

i have to agree...Yoga...Water aerobics...Very low impact aerobics...Stretching exercises...Those are all excellent!

Hugs,
ladybrannon

Ladybrannon-
they'd be even more excellent if I got off my butt and did them. Lupus or no this motivation thing is troublesome!

Hello All,
My name is Kalief and I am in the US Navy. In 2003 my kidney stop working and I was later told I had lupus. Since then I have gained 80lbs and now maybe discharged out of the military because I keep having flares. I have read your post and agree with most of it. It also starter giving me chest pain when I lay down from time to time(Pericarditis). On my last visit to the doctors office they said that my body is dumping way to much potein which in turn is affect my thyroid and other things. He did not want to increase my meds because he also said that my white blood count in to low and increasing the cellcept or Prednisone could make it worst. I just wanted to say thank you for the post because you have really hepled me to see that I am not the only one fight this disease. Kalief