thanks for your reply and im sorry it took me so long to see it. i used to get a notice if someone replied and i must have accidently changed my settings...i will have to go look or ask jc or someone for help bc i am not seeing all the replies and feel bad that it goes unseen for a while.
i agree it would be so nice to meet for tea...some people in other groups have managed to have get togethers from time to time and i think they really love it.
and that hot tub sounds divine...however, my last experience with a waterbed was comical...i was pregnant and...well, you can imagine, it was a major task to get my round body out of the bed. My husband had to hold my hand while I sloshed enough to get momentum and then take off when the wave was high. lol
della, i certainly feel your pain. you know, there are so many of us up at night, i bet if we all hummed at the same time it would be heard from the moon. lol i am just thinking about how i moan and groan when i am in pain. i live alone, but my neighbors hear everything---paper walls. it just struck me that since we all have trouble sleeping due to pain, we are a veritable army of night time moaners and groaners and all that vocal energy must reach a sort of critical mass...and turn into a tune..or a hymn...
i'm sorry, i must be way out on a limb hear...i just think that if God hears the prayers that we hold in the silence of our hearts I wonder what he thinks when we are all singing the pain-song....like whale songs heard under water, do we each "hear" one another in some kind of untapped wave frequency?
As long as I am out this far, i am going to say, "I hope so. Because I feel so alone in my pain sometimes. And i will feel less alone if I tune into the suffering we share; and I will keep singing my part as i listen to yours until someone a cure is found...
Della said:
I am so sorry, Janice about your adrenal insufficiency. I just read about what it is and pray that you feel better.
I don't sleep well and am up and down all night. I get so hot at night that I'm uncomfortable and combine that with the leg pain...... It's not hot flashes, so I have no idea why I get that way. When I do fall asleep, I don't want to get up. I'll stay in bed and doze for hours if I can. It's almost as if I try to grab as much sleep as I can when I can.
Thank you for the prayers for the soaks in the tub. You don't think about them the same way when you can still take them comfortably by yourself.
i feel better knowing that you are awake and praying...i don't feel nearly as alone as i thought i was...we must be quite a prayer brigade in the wee hours, right?
fighter said:
Hello Janice, my spiritual butterfly, I am so sorry that you are having trouble sleeping, but know that you are not alone, I also wake up many times through the night. I fret even going to the bathroom, cause I know that I won't be able to go back to sleep, so I usually lay awake at night listen to the spriritual radio station. So I am like the others on LWL, I sleep when I can, and my husband takes care of everything, I thank God for him and his caring. I will send up a prayer for you, cause I am like you, I am tired of being everyones medical experiment, NO MORE DOCTORS!!!!!
hey there sweet beverly! How are you doing???? i dont blame you for not wanting more meds. i am trying to cut down on what i have before I have to have someone build a new cabinet just to store meds....o i know i exaggerate, but seriously, ya'll. no more pills please.
Beverly L. said:
6+Well Janice you are not alone in this !!!smile Somenites am up til the break of dawn , and find myself sleeping through the day hours , even through the doctors say that i might need some kind of sleeping pill - i don't want more meds , tiered of thaking the ones that i have to take!!! LOL so hope that you find some way to get some sleep for more than 3 hours , and when you do please let me know !!! i want to sleep also.... Beverly L.
o im sorry about the seizures...my son has fought seizure disorder since he was five. when he started kindergaten i was walking him to the bus stop. He was wearing red shorts and a red shirt; he carried his little he-man-lunch box in one hand and held =on tight to me with his other. he looked up at me and said, "Mom, I don't want to have seizures." I didn't know what to say. But love for my little boy, especially since he was being all brave on his first day of school spilled out of my broken heart; a wordless prayer for mercy exploded with such force that i am sure Nick and I walked to the rest of the way in a downpour of tears from heaven, because God's heart could not have heard the words of that little boy with out gushing mercy.
Last week when they told me I have congestive heart failure I said to God, "God, I don't want to have congestive heart failure, or lupus, or adrenal insufficiently , or depression, and I don't want to be in pain all the time."
he held my hand a little tighter and let it rain.
Tez_20 said:
Hi Janice,
I don't think i've saw one of those baths and no thank you to a bath as my seizures put a stop to that more than once and they started making me panic bad...i'm glad i've got a stand in shower although the hubby misses one.lol
Janice have your doctor's looked into insomnia as Lupus causes this very bad for different patients. xxx
janice said:
you know, if I can make a wish I will wish for one on those baths that has a door that you can just get open, get in and sit in the wonderful hot water...ahhh
Such a very feeling story of your son and yourself and bless your son when he was younger saying that...i really hope your sons under control now and able to live a descent life as seizures can stop that for a large amount of people.
I bet there's not a day go by where people who have one thing or another, wonder why me as i've done it so many times but we're put on this earth for trials in our lives and some have it simple and some are tested in such hard cruel ways where there's no escaping it.
"Why why why" the main wonder with me is and it's always carried a large ?
janice said:
o im sorry about the seizures...my son has fought seizure disorder since he was five. when he started kindergaten i was walking him to the bus stop. He was wearing red shorts and a red shirt; he carried his little he-man-lunch box in one hand and held =on tight to me with his other. he looked up at me and said, "Mom, I don't want to have seizures." I didn't know what to say. But love for my little boy, especially since he was being all brave on his first day of school spilled out of my broken heart; a wordless prayer for mercy exploded with such force that i am sure Nick and I walked to the rest of the way in a downpour of tears from heaven, because God's heart could not have heard the words of that little boy with out gushing mercy.
Last week when they told me I have congestive heart failure I said to God, "God, I don't want to have congestive heart failure, or lupus, or adrenal insufficiently , or depression, and I don't want to be in pain all the time."
he held my hand a little tighter and let it rain.
Tez_20 said:
Hi Janice,
I don't think i've saw one of those baths and no thank you to a bath as my seizures put a stop to that more than once and they started making me panic bad...i'm glad i've got a stand in shower although the hubby misses one.lol
Janice have your doctor's looked into insomnia as Lupus causes this very bad for different patients. xxx
janice said:
you know, if I can make a wish I will wish for one on those baths that has a door that you can just get open, get in and sit in the wonderful hot water...ahhh
This topic is like tabu for me, but when I read this I said, "wow, someone else that has insomnia!" I am beginning to get a little loopy becuz of this. I take a lot of meds, several of them narcotics due to many chronic issues with my back, plus due to steroids I have a broken back and my Rheumy will NOT clear me for surgery for the other issues with my back; pinched nerves, herniations, bulging disks, stenosis,etc..... He won't clear me becuz the Lupus has attacked my lungs and he is fearful that I will stop breathing or end up with Lupus related pneumonia.....grrrrr So, my point was even w/all these meds I take I can't sleep and still have pain! I don't understand it. It's not so much dreams I have....it's strange. I just start to drift off and I have these....for lack of a better word.....visions like. I have even caught myself moving my hands and arms about ;O Sometimes on a rare occasion I play a movie on my ipad and I will actually doze off for a couple of hours and then I'm awake for the duration.....I have xanax to take when I need it, but it does strange things to me. I may fall asleep for 2-3 hrs and then I get up and go into the kitchen or the living room and fall asleep in a chair....and my husband will come in and have to wake me so I don't fall out of the chair!! AAARRGGHH !!! It also leaves me soooo groggy and I try to nap, but I usually can't accomplish this either. I also cannot get into the tub due to back stuff, but oh would I love to soak in some scented oils.....mmmmm I may try the tea thing.....
Anyway, thank you so much for posting this....I like reading the feedback, plus to know that someone else has this problem too helps me to know that I'm not the only one.....not that I wish anyone else have this issue ;(
Insomnia can come bad with some people suffering Lupus and what i can't understand is your specialist not wanting to operate, my lungs are bad with the Lupus as we've discussed and more things and in feb i had another operation...they got me down to theatre i was freezing cold so they put an heater between my legs because of the raynauds..they wanted to inject warfarin and i refused...then they put me on a drip so my organs got fluid at a steady rate, then special oxygen for my lungs and heart for throughout the surgery and also a tube down my nose to gush air to my heart....there is possiblities he can take with you, unless he may be frightened of any consequencies.
I have it like yourself though sitting down to relax then gone for 2-3hrs...it makes me feel like i have that sleep disorder, if you sit down your out for the count.
Gail your not alone with your issues...i bet all member's can't count the total of how much we all suffer the same things.
((Hugs Terri xxx))
Angel312 said:
This topic is like tabu for me, but when I read this I said, "wow, someone else that has insomnia!" I am beginning to get a little loopy becuz of this. I take a lot of meds, several of them narcotics due to many chronic issues with my back, plus due to steroids I have a broken back and my Rheumy will NOT clear me for surgery for the other issues with my back; pinched nerves, herniations, bulging disks, stenosis,etc..... He won't clear me becuz the Lupus has attacked my lungs and he is fearful that I will stop breathing or end up with Lupus related pneumonia.....grrrrr So, my point was even w/all these meds I take I can't sleep and still have pain! I don't understand it. It's not so much dreams I have....it's strange. I just start to drift off and I have these....for lack of a better word.....visions like. I have even caught myself moving my hands and arms about ;O Sometimes on a rare occasion I play a movie on my ipad and I will actually doze off for a couple of hours and then I'm awake for the duration.....I have xanax to take when I need it, but it does strange things to me. I may fall asleep for 2-3 hrs and then I get up and go into the kitchen or the living room and fall asleep in a chair....and my husband will come in and have to wake me so I don't fall out of the chair!! AAARRGGHH !!! It also leaves me soooo groggy and I try to nap, but I usually can't accomplish this either. I also cannot get into the tub due to back stuff, but oh would I love to soak in some scented oils.....mmmmm I may try the tea thing.....
Anyway, thank you so much for posting this....I like reading the feedback, plus to know that someone else has this problem too helps me to know that I'm not the only one.....not that I wish anyone else have this issue ;(
Oh my GOD , i thought that i was the only one feeling like hammering !!! Some nites all i want 2do is take my hips , hands , feet, and arms completely off !!! My kids laugh at me - sometin=mes , until they see that am really in PAIN and can't bare it !!! BUt just to think am really not alone some nites is helps me a little bite ..... Beverly L. janice said:
della, i certainly feel your pain. you know, there are so many of us up at night, i bet if we all hummed at the same time it would be heard from the moon. lol i am just thinking about how i moan and groan when i am in pain. i live alone, but my neighbors hear everything---paper walls. it just struck me that since we all have trouble sleeping due to pain, we are a veritable army of night time moaners and groaners and all that vocal energy must reach a sort of critical mass...and turn into a tune..or a hymn...
i'm sorry, i must be way out on a limb hear...i just think that if God hears the prayers that we hold in the silence of our hearts I wonder what he thinks when we are all singing the pain-song....like whale songs heard under water, do we each "hear" one another in some kind of untapped wave frequency?
As long as I am out this far, i am going to say, "I hope so. Because I feel so alone in my pain sometimes. And i will feel less alone if I tune into the suffering we share; and I will keep singing my part as i listen to yours until someone a cure is found...
Della said:
I am so sorry, Janice about your adrenal insufficiency. I just read about what it is and pray that you feel better.
I don't sleep well and am up and down all night. I get so hot at night that I'm uncomfortable and combine that with the leg pain...... It's not hot flashes, so I have no idea why I get that way. When I do fall asleep, I don't want to get up. I'll stay in bed and doze for hours if I can. It's almost as if I try to grab as much sleep as I can when I can.
Thank you for the prayers for the soaks in the tub. You don't think about them the same way when you can still take them comfortably by yourself.
Yeah!! nomore pills!!! if they could just put it all into just one , i would not mind at all !!! LOL... Beverly L.
P.S. sorry it took me so long to responde the weather here in Stone Mountain , Ga. has had me in the bed ( exspecially after the LUPUS walk last weekend - but I had FUN !!!!! so the ache and pain was worth it -smile ).... Bevrly L.
janice said:
hey there sweet beverly! How are you doing???? i dont blame you for not wanting more meds. i am trying to cut down on what i have before I have to have someone build a new cabinet just to store meds....o i know i exaggerate, but seriously, ya'll. no more pills please.
Beverly L. said:
6+Well Janice you are not alone in this !!!smile Somenites am up til the break of dawn , and find myself sleeping through the day hours , even through the doctors say that i might need some kind of sleeping pill - i don't want more meds , tiered of thaking the ones that i have to take!!! LOL so hope that you find some way to get some sleep for more than 3 hours , and when you do please let me know !!! i want to sleep also.... Beverly L.
I have been getting marijuana suckers(candy)they taste like pineapple,The women who makes them with the oil off the plant,makes all kinds of hard candies with it,they actually taste really good,The first time she gave me a sucker I was worried,but it makes me feel better,I don’t smoke it because I already sleep with oxygen my lungs are trashed…The candy does worry me ,because of our youth today,a kid would never know that they were sucking on a piece of candy with marijuana in it ,so if you have young kids,beware…they are making lemon drops and gummy worms ect…you can get them at any medical dispense clinics in Oregon ,they even make dog biscuits for your dog if they have cancer or something really wrong with them,I have to say my trip their was quite shocking and a good learning experience as well…good luck and try some vitamin D at night…celeste
Hello, be careful with those suckers and taking your meds.!! Have you talked with your doctor about the suckers? Just be safe if you have not done that , letting the doctor aware of this-okay…Beverly L.