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  FORUM:   Weekly Check in
TOPIC:   Not sure what to do 


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BACKMOON
BACKMOON's Photo Posts: 7,985
8/19/13 11:08 A

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Morning Mary,

it is good to see you back. It has been a long time.

I really don't know what it feels like to sleep 8 hours. I can honestly say it has probably been close to 20 years since I have had a whole 8 hrs sleep But, that being said if I sleep 3 hrs. I feel very good and get up feeling refreshed. Then after an hour or so I'll lay back down and sleep another hour or two. I rarely get over 6 hours sleep. and if I try I usually feel sluggish.

And yes on .my good days I tend to overdo it and sometimes even on my bad days, which I've had a lot lately. I'm in flare right now and it's painful to just sit here and type. Worst part is having to go back and correct all my mistakes. LOL

Rick

You have come to far to be controlled by a cookie!
Life is God's gift to you. What you chose to do with your life is your gift to God.
Three things I believe in and would die for:
My God,
My Family,
My Country.
Leader
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Co leader
Sparks with Lupus

www.flickr.com/photos/backmoon/


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DENIPARKER
Posts: 1,010
8/19/13 9:20 A

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Hi Mary,

My name is Deni. Sorry but do not remember you but its very nice to meet you. Yes I do feel like if I need to take another step I will fall over. Other times I feel like I could do things. I just take the good times and do what I can and rest when I have to.The weekly check in is there its one of the last posts. Hope you find it.

Welcome back Deni emoticon


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CAPISTRANO
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8/19/13 9:13 A

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Hi Mary
So glad to see you posting. You're in the right section for our weekly posts, just look for this weeks date 8/18-8/24.
I think we all tend to do too much when we are feeling good cause like you said, you never know when that flare will come.
I have gotten better with sleep lately. I take melatonin at night and it helps me get a deep recuperative sleep. I also do not have my computer or a TV in my bedroom. I listen to soothing music, make sure the room is dark and on the cool side. About a 1/2 hour before sleep, I shut off the TV and read a book...it's my routine and it works for me. And yes, for me, sleeping too much doesn't help.

Cathy


Other Resource: Peace is to be found only within, and unless one finds it there he will never find it at all. Peace lies not in the external world. It lies within one's own soul.


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LADYB2013
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8/18/13 10:03 P

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I do the same thing when i am feeling better. I feel like i can conquer the world and take on way to much. like i know i have to keep doing and going ,becasue i never know when that flare will hit and i can be down for a very long time. is it just me or do others also feel that 8 hrs of sleep sometimes just feels like a nap. i can sometimes sleep 12 yrs and feel barley refreshed. or is sleeping too long making things worse? hugs to all . glad to be here again,''

mary

LADY


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LADYB2013
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8/18/13 9:50 P

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there yall are lol i couldnt find the weekly check in. anyway hugssssss to all.
been awhile since i posted. i was in a major flare and still not out of it completley, not to mention i am working the graveyard shift and my body is literally gone into shock i think.

LADY


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ELATEDLOSER
Posts: 165
8/21/11 1:23 P

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Thanks Rick! We have been thinking about a different rheumy, but my daughter just loves this guy. The other one in town is the one who made her sick with steroids. Probably will have to go out of town. Thanks for your support and input...we appreciate it!
Becky

Slow and Steady wins the race!!


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DENIPARKER
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8/18/11 3:55 P

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Hi,

Thanks Rick for the info. I am going to see my Doc Friday the 19th and I am going to remember your words when talking to him.

Thanks again Deniemoticonemoticon


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BACKMOON
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8/18/11 12:33 P

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When I am in remission I don't show any symptoms. I also have never had pleurisy and the only time I have pneumonia was after surgery when I had my hip replaced. Granted there are certain markers Dr.s look for but Lupus affects each individual differently. I am not a Dr. and I don't claim to know everything but in the 40 years since my diagnosis I have been through a lot and am still going through things I wish I wasn't. My advise, get another rheumy or at least a second opinion. One thing I have learned is if you have to have an open mind your Dr should as well. He is your Dr. there to help you and part of his job is to listen to you. i have had to fire a Dr. once and I'm glad I did because he spent a great deal of time trying to tell me I didn't have Lupus and all the Dr's preceding him were wrong.

Good luck

Rick

You have come to far to be controlled by a cookie!
Life is God's gift to you. What you chose to do with your life is your gift to God.
Three things I believe in and would die for:
My God,
My Family,
My Country.
Leader
TOPS MEMBERS
Co leader
Sparks with Lupus

www.flickr.com/photos/backmoon/


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ELATEDLOSER
Posts: 165
8/18/11 10:32 A

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The lupus panels show that he has all the markers for lupus! The rheumatologist has yet to see any of the swelling and pain that makes it near impossible to move his arms, or walk, therefore....he doesn't have lupus because the symptoms aren't there!! (HE told my daughter that she had to watch out for the 3 P's...pneumonia, pleurisy and pericarditis.) Is this guy just a jerk or does he know what he's doing. Our latest trek was to a pulmonologist, because he had pleaurisy and pneumonia and they have yet to heal after 3 months and 2 courses of antibiotics. Pulmonologist now says he has done all he can, I'm sure they will come up with another specialist for him to see soon. We are getting very fed up and soon I won't be able to get him to a dr at all because they are bouncing him from one to another and still he is sick.

Slow and Steady wins the race!!


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BACKMOON
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8/9/11 4:33 P

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Have any of the Dr.'s done a Lupus Panel? Blood work should answer the question if they did these tests.

You have come to far to be controlled by a cookie!
Life is God's gift to you. What you chose to do with your life is your gift to God.
Three things I believe in and would die for:
My God,
My Family,
My Country.
Leader
TOPS MEMBERS
Co leader
Sparks with Lupus

www.flickr.com/photos/backmoon/


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ELATEDLOSER
Posts: 165
8/7/11 8:49 P

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I have a question about males with lupus. My husband has been told that he has all the markers for lupus, but doesn't have the symptoms..or enough symptoms, so he doesn't have lupus. He is having a very hard time with his arms and legs the past week. I think the dr just hasn't seen the symptoms or seen them together to tie them to lupus. He has barely been able to walk or move his arms and he is a strong working man and it is really taking a toll on him. Someone want to tell me how to talk to a rheumatologist?!! I have been fighting with drs for over 30 years due to my health problems, but this guy just doesn't seem to want to believe that my husband and my daughter both have lupus. My daughter was diagnosed over 2 yrs ago and is just now getting used to the fibro which is the hardest for her and the joint pain that comes with the rain. I can't seem to find a dr to work with my husband they just bounce him from one specialist to another. I think he would heal, or get better, if they would treat him for lupus.
Thanks all!
Becky

Slow and Steady wins the race!!


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BACKMOON
BACKMOON's Photo Posts: 7,985
2/27/11 8:40 P

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The WII is a good product. I have one also though I don't use it much anymore. But it is good for therapy.

You have come to far to be controlled by a cookie!
Life is God's gift to you. What you chose to do with your life is your gift to God.
Three things I believe in and would die for:
My God,
My Family,
My Country.
Leader
TOPS MEMBERS
Co leader
Sparks with Lupus

www.flickr.com/photos/backmoon/


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MSKIPPER43
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2/27/11 5:46 P

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I agree with everybody.... I felt like I was the Energizer Bunny with rundown batteries!!! LOL It took me a long time to notfeel that way after about 4-5 hrs it seemed like that was my nap or rest time. Just do what U can Tiger don't really try to push to hard because then it will take its toll on the end. (at least it does for me) I then had a stroke on top of my lupus, but it was just about the time that the Wii was getting popular and it allowed me to do things while sitting in a chair like so I was still getting some exercise. It also hd yoga and had strenghth training. I actually looked forward to the Buddha sit at the end. It doesn't require that you work your body hard to get a good workout.
I am sorry that I am a Wii junky, I am just really excited because I know that I had rouble with just writing my name or wiping my own butt, let alone walking and exercising and it really helped (because it measures your balance) with me regaining a lot of mobility and it allowed me to try to exercise when I was not even ableto walk across the room. Now I am back to work, I drive a stick shift, I walk me dogs, I shop at Wal-Mart, etc I just know that it gave me a good workout without trying to lift weghts are put added weight on my muscle to cause me a flair up.

Genetics may load the gun but environment pulls the trigger.

Pamela Peeke


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BWCAGRL
BWCAGRL's Photo Posts: 3,208
2/28/10 9:56 A

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Deni...
You will get through this. Even when I am not in a flare-up I have to be very careful about working out...so I can only do cardio every other day. When I am in a flare, I often can't work out at all. And like the others have said...stretching is the best. I do use a stability ball now which has made a big difference for me in stretching and being able to work out. Being on the floor for some exercises can be too hard, but being on a ball has been much easier for me.
Also...somewhere in the fitness area here there are exercises for those with disabilities...many of them done from a sitting position.
Hang in there!

Tiger great to see you again!

Melissa

Melissa
Lupus-Team Butterfly co-leader


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DENIPARKER
Posts: 1,010
2/28/10 8:13 A

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Hi everyone, A big thank you for all your help so far, it means so much to me to get all the advice from people who have been there. Reading your help and advice brought tears to my eyes. Getting adive from your doc is one thing but when it comes from someone whos been there and gives that advice because they want nothing but to help means everything in the world. Again Thank you!!!! emoticonemoticon


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BACKMOON
BACKMOON's Photo Posts: 7,985
2/28/10 12:17 A

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Tiger! Good to see you, hear from you....
anyway, sound advice from the ladies. Don't push yourself. IT WILL COME. Just acknowledging the problem is the first step in conquering it. Give yourself some time and gently work into it. We have all been there, so you are not alone.

Rick

You have come to far to be controlled by a cookie!
Life is God's gift to you. What you chose to do with your life is your gift to God.
Three things I believe in and would die for:
My God,
My Family,
My Country.
Leader
TOPS MEMBERS
Co leader
Sparks with Lupus

www.flickr.com/photos/backmoon/


 current weight: 194.6 
 
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CAPISTRANO
CAPISTRANO's Photo Posts: 3,315
2/27/10 6:49 P

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Hello
Hey Tiger, good to see you here, it's been awhile. Missed your posts!
Deni, I agree with Tiger. I remember when I was first diagnosed and felt horrible, was exhausted and sore all over. Warm water and the stretches will help a lot, getting enough sleep and maybe a nap in during the day if you can. Your body is going through a lot with Lupus so you don't want to push too much.

Listening to my body and pacing myself were hard for me. I tend to overdo things especially when I have a bit more energy and then pay for it later.

I know it's frustrating waiting for meds to work and healing seems so painfully slow and you're body won't do the things it's always been able to do. You just want things to be 'normal' again so you can get on with life.
Thinga will get better and you will feel better. Having patience with this is never easy but it will help you get back to functioning better.

Take care and keep posting and messaging. We're here for you!
Cathy


Other Resource: Peace is to be found only within, and unless one finds it there he will never find it at all. Peace lies not in the external world. It lies within one's own soul.


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TIGER1957
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2/27/10 6:15 P

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Hey Deni. It sounds as if you've been recently diagnosed with Lupus. If you're experiencing a flare, you probably shouldn't do more than gentle stretching. If you can find a way, eventually, doing some kind of water aerobics is easier on your body, and you can still get a workout. In the meantime, even stretching slowly and luxuriously in a warm bath can help some. I think I would concentrate on nutrition, proper sleep and some very gentle stretching for, say, a week. If you feel you're improving, maybe add something else. If you're getting worse, cut back. And so on.

Life with Lupus is certainly an adventure. We never know exactly how we're going to feel when we wake up each day. Hang in there and try not to be too hard on yourself.

Tiggers bounce BIG!
100 pounds lost. 5'4".
WW goal again (04/07/10)
WW goal of 135.0 (19/04/07)
Blue Belt in Tankyushin Aikido (27/03/10)
Ottawa, Ontario, Canada


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DENIPARKER
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2/27/10 2:34 P

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Hi everyone, Ive been having a hard time with the fitness part of spark. My lupus is farly new and the pain is pretty bad as is my energy. I havent been able to do much. After all the rest of the program then my life well you know theres not much left. What do you do? I really could use some feedback and ideas. This disease is so hard. Ive never had anything that I couldnt take a pill or change my habits a bit and get better. Not this. The waiting for the meds to kick in is very long. Well hope to hear from some of you .emoticonemoticon

Edited by: DENIPARKER at: 2/27/2010 (14:38)

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