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artpainter
Veteran Member


Date Joined Feb 2006
Total Posts : 620
   Posted 4/7/2006 2:53 PM (GMT -7)   
hi from artpainter;still sick, just want to ell everyone hi tc, hugs & i want to chat again as soon as i can...love you folks;found out, no mri, but a pill W/a camerayeah, i swallow it;sounds kind of fum in it is what i have to do;those are kind of big...that's to check the scarring & possible reocurrence of crohns.yeah i get to swallow it;sounds more fun than a barium enema,lol. :-)
i believe we are all connected;everything is connected on an atomic and subatomic level, so how can we be separate;how can one thing not affect another? another reason to be kind to each other...and to think before we speak. and to try to love one another or at least give up hatred for individuals. and i don't mean we should turn into Pollyanna .no way...we musk feel and acknowledge all our feelings;it's how  we handle them.   that is the hardest part for me, i:ve discovered. i don't like injustice & i don't stay quiet about it. sometimes i'm disliked for that. i can live with it...lots of practice.I was marching in the streets before a lot of you were born, so i think that tells you a lot. i'm not brave. but i care.and i try to help.  so do things like YOU do them;with the docs help
bob dylan said, "I aint gonna work on maggies farm no more            you all try to do the same;hold on to all the dignity you can& do as many things your own way as you can;of course swe have to deal with docs & so on, but we need to keep ourselves.


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 4/7/2006 6:34 PM (GMT -7)   
artpainter, I guess I didn't know you had crohn's along with CFS. My father in law has crohns - I've heard it's miserable to have. I hope the docs are able to figure out what is going on and help. I read your other post about losing the long post you were typing to me, but you lost it. I have done that before and it is so upsetting. Don't worry about it - I'm sure we'll catch up at some time.

I know I've said it before, but I'm sorry you are so miserable. Do you have any family or friends that live anywhere near you that you can talk to or that visit and offer support? I am fortunate to have a few close friends who have not disappeared since I have gotten sick. My mom also lives about 40 minutes away and she helps when she can, but she's getting older and has a lot of her own stuff to deal with. I am fortunate to have my hubby and kids, but hubby works long hours and travels usually once a month for work. My kids are great but they are fairly young and I feel guilty about not being able to do much with them anymore. I keep telling myself that the most important thing is that they know I love them and I can always do quiet activities with them like read, draw, color, snuggle, watch a movie, or just talk.

I've rambled on long enough and really need to get my kids to bed - I'll probably do the same myself. Take care and I look forward to talking to you more. Hang in there - gentle hugs for you

Diagnosis:  Suspected Lupus 2004; Raynauds 2006; CFS 1991; Mono 1985

Meds:  Plaquenil 400mg; tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 200mg; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/


artpainter
Veteran Member


Date Joined Feb 2006
Total Posts : 620
   Posted 4/7/2006 9:17 PM (GMT -7)   
gottaloveya, hip..bless your sweet heart you are so kind;just know that painter is smiling right now cause of you...later, sweet lady nite,nite
i believe we are all connected;everything is connected on an atomic and subatomic level, so how can we be separate;how can one thing not affect another? another reason to be kind to each other...and to think before we speak. and to try to love one another or at least give up hatred for individuals. and i don't mean we should turn into Pollyanna .no way...we musk feel and acknowledge all our feelings;it's how  we handle them.   that is the hardest part for me, i:ve discovered. i don't like injustice & i don't stay quiet about it. sometimes i'm disliked for that. i can live with it...lots of practice.I was marching in the streets before a lot of you were born, so i think that tells you a lot. i'm not brave. but i care.and i try to help.  so do things like YOU do them;with the docs help
bob dylan said, "I aint gonna work on maggies farm no more            you all try to do the same;hold on to all the dignity you can& do as many things your own way as you can;of course swe have to deal with docs & so on, but we need to keep ourselves.


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 4/8/2006 11:54 AM (GMT -7)   
Hi painter, I saw on the lupus forum that you were up late and had trouble sleeping last night. It's too bad you mssed Rosie in the chat room. SHe said that she sometimes has trouble with her computer, especially when she tries the chat room so I guess she doesn't chat much.

With your crohns I was wondering if you have visited the crohn's forum. I went there to ask some questions about my son because he has some crohns symptoms. The people there seem nice too. It's too bad the CFS forum is so slow.

Were you ever able to get some sleep? Fortunately I have some meds that help me sleep or I would have a lot of trouble. I've actually been a little better the past 2 days. I'm hoping that it lasts for at least a little while.

Take care and I'll talk to you soon.

Diagnosis:  Suspected Lupus 2004; Raynauds 2006; CFS 1991; Mono 1985

Meds:  Plaquenil 400mg; tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 200mg; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/


artpainter
Veteran Member


Date Joined Feb 2006
Total Posts : 620
   Posted 4/8/2006 12:57 PM (GMT -7)   
:-)   eyes eyes eyes eyes :-) :-) eyes :-) hi,hippimom;appreciate post & info on rosie's puter...i just wish she hsd waited 2 min. for me lst. nt...oh, well;i'm sure she was tired;i really hope to hear from her, tho;i do not stand people up...just don't & i'm afraid i may have hurt her  cause she probably thought i did. i don't want to hurt anyone;i'm here to try to help, not cause harm;i'm probably taking this too seriously, maybe? i am a worrier, about everything, hip...i slept about an hr & 1/2 lst nt;i posted rosie then waitedin the lupus room alone until 3:30...couldn't sleep anyway & i take lunesta...certain times of the month..hormonal stuff & restless leg syndrome, lunesta doesn't work. what do you take? i'm on 6mg, too..the strongest.anyway, there is this cool new canadian singer named Kathleen Edwards who writes her own stuff...she is really good;if you haven't heard he, watch for her, hip. do u like alison kraus? i think she is so underappreciated it's beyond belief...god she & the union station are good! as you can tell i'm better today..yack, yammer, babbling on.iris dement;time for some appalacian, i think;maybe the gospel one;it's super...she restyles songs a bit if she doesn't write them herself..she's a songwriter/singer..kind of screechy voice, suits her & the songs & i love her. super music.better stop, hip, thanks again...i hope to god your son does not have crohns;are there ay questions i could answer for you? i've never been in the room..nobody there when i'm on..i know a few thngs after 2 bowel resections...just not the newest meds;what kind of symptoms is he showing, hip? this is worrysome, poor kid..tc & a truckload of hugs,  painter
i believe we are all connected;everything is connected on an atomic and subatomic level, so how can we be separate;how can one thing not affect another? another reason to be kind to each other...and to think before we speak. and to try to love one another or at least give up hatred for individuals. and i don't mean we should turn into Pollyanna .no way...we musk feel and acknowledge all our feelings;it's how  we handle them.   that is the hardest part for me, i:ve discovered. i don't like injustice & i don't stay quiet about it. sometimes i'm disliked for that. i can live with it...lots of practice.I was marching in the streets before a lot of you were born, so i think that tells you a lot. i'm not brave. but i care.and i try to help.  so do things like YOU do them;with the docs help
bob dylan said, "I aint gonna work on maggies farm no more            you all try to do the same;hold on to all the dignity you can& do as many things your own way as you can;of course swe have to deal with docs & so on, but we need to keep ourselves.


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 4/8/2006 4:01 PM (GMT -7)   
Hi painter. I love the musicians you named. I found Kathleen Edwards about 2 years ago and love her stuff. I've been listening to Alison Krauss for about 10 years. My brother gave me a live dual disk cd of her with union station last year - it was great! Have you heard Amy Martin? She's a great folk singer. SHe's got a beautiful voice - the cd I have is a live show she did in Montana I think. She does a few political songs too that I have a feeling you would like.

Thanks for asking about my son. I honestly don't think he has crohn's. about a year ago he got really fatigued and had a lot of pain (he was only 7 then). It turned out he had a positive EBV. Well, ever since then he has a lot of joint pain and he gets tired pretty easily. He's a trooper though - he's still really active and plays and likes sports. He has a few of the labs that indicate possible lupus, but a pediatric rheumatologist thinks it's some other type of inflammatory disease. He got started on prescription naproxen (Aleve) and physical therapy and it seems to be helping him. I pray that whatever he has is temporary and that he can have a normal childhood.

You know how I said I was starting to feel better? Well, now I realize that I have overdone it the past two days and I'm crashing again. I tend to do too much when I start to feel better because I feel like I have to make up for lost time. Well, now I'm paying for it.

THe meds I take help with both sleep and pain. I take both neurontin and amitriptyline at night. I'm super sensitive to meds, so I don't need much. Your sleep problems sound way worse than mine. Lunesta would probably put mo out for days.

I hope tonight is a better night for you. Take care

Diagnosis:  Suspected Lupus 2004; Raynauds 2006; CFS 1991; Mono 1985

Meds:  Plaquenil 400mg; tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 200mg; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/


artpainter
Veteran Member


Date Joined Feb 2006
Total Posts : 620
   Posted 4/8/2006 8:41 PM (GMT -7)   
eyes   eyes eyes eyes :-) :-) hello, hippimom, thanks so much for post;love to get your posts;the music, cool...i heard a new singer named adrienne young;same wonderful stuff;not the same, but the marvelous styling..very folk;don't know where she & her band are from;if you haven't heard her, listen...you will;i'm looking forward to hearing amy martin, never have. i saw kris kristofferson sing his newest song on jay leno & conan o'brien...it's so beautiful, poingnant withour self-pity;it's about getting older & it's called ,i think. "Ain't we come a long way down" 'ain't we come a long way down ...this old road";it's a celebration of experiences & survival;i love it.i will buy his cd just for that, tho i love him anyway;he was so flattered yrs. ago when lightfoot sang "Me & bobby mcgee " sp? i wouldn't tell kristofferson, but i prefer gordon's version ;they're different, tho;kristofferson is so good..'sunday morning coming down', & on & on.i miss johnny cash & june;mother maybell was a fovorite of mine...  i am so glad :-) to hear that yoursonprobably doesn't have crohns. could it be what i had as a small kid;a type of rheumatoid arthritis;something like that;he may outgrow it...very glad ,tho he's being treated;i can only imagine how you worry about him. that is one thing i miss, not having children...but pid so eary...no chance & with active crohns until after age 30;& not able to nourish a fetus , couldn't properly nourish myself...by the time i could, i had cfs & menopause anyway, not that the pause mattered the mess my tubes are...i also have & heve had pmdd since 12, puberty..like the pms from hell that gives you one level wk a month;my mom still hastrouble, as do i...sorry, i'll stop bi...... i know so many of you all feel & hurt worse.i really like you, hip, you are so HIP, so hep. dates me for sure..don't care;i, too, as have you, "come a long way down...this old road";with many miles to go, god willing.sleep well, friend..big ol shaggy rugs of hugs;big trucks of hugs, too... yeah hang in xxooxo nite, friend tc
i believe we are all connected;everything is connected on an atomic and subatomic level, so how can we be separate;how can one thing not affect another? another reason to be kind to each other...and to think before we speak. and to try to love one another or at least give up hatred for individuals. and i don't mean we should turn into Pollyanna .no way...we musk feel and acknowledge all our feelings;it's how  we handle them.   that is the hardest part for me, i:ve discovered. i don't like injustice & i don't stay quiet about it. sometimes i'm disliked for that. i can live with it...lots of practice.I was marching in the streets before a lot of you were born, so i think that tells you a lot. i'm not brave. but i care.and i try to help.  so do things like YOU do them;with the docs help
bob dylan said, "I aint gonna work on maggies farm no more            you all try to do the same;hold on to all the dignity you can& do as many things your own way as you can;of course swe have to deal with docs & so on, but we need to keep ourselves.


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 4/9/2006 5:06 PM (GMT -7)   
Hi painter. I haven't heard adrienne young. I'll have to try to find some of her stuff. We seem to like a lot of the same type of music. I always say I was born a decade or two too late. I was born in 1966, but I connect so much with the music of that time and all of the social issues (I'm still very involved in social issues of today).

I'm sorry you were never able to have kids. I was blessed to have my kids while my CFS was in remission and I was relatively healthy. I did have a miscarriage between my two kids and that was devistating. I would have loved to have one more child, but my body couldn't handle it now and I am grateful that I'm blessed with the 2 kids I have.

I continue to hope that you will eventually get a peaceful and restful night's sleep.

Take care of yourself.
-hippi

Diagnosis:  Suspected Lupus 2004; Raynauds 2006; CFS 1991; Mono 1985

Meds:  Plaquenil 400mg; tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 200mg; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/


artpainter
Veteran Member


Date Joined Feb 2006
Total Posts : 620
   Posted 4/9/2006 5:46 PM (GMT -7)   
hey, hippimom;realy enjoyed the post;thanks :-) eyes eyes eyes eyes eyes eyes eyes eyes eyes eyes eyes eyes eyes eyes eyes eyes eyes eyes eyes i feel a bit better today;too many eyes, you think? nah, not posible! :-)   i think  adrienne yung only has 1 cd out, aybe a 2nd now, don't know...but she's young, new & just getting some exposure, and she's good...but kathleen edwards blows me away! What are some of the lyrics i that song i love..."and i know where the cops hang out....then she goes, you're gong down". 1st time i heard it i didn't listen closely to the lyrics so i was surprised when what i thought was a lovely ballad w/a good rhythm was a real song & story & delighted;you go, kathleen, don't let him pull any cr.. on you! you are 39 then? mature for 39, compared to the other 39 yr olds i have met;illness can do that, but i think it's more you & who you are;i would relate to you the same way if you were 22 or 92, hip!don't matter 'tall, just like u. gotta go eat a bit of someting..maybe later;still tired, slept 3 hrs. this pm. oh, hip. i , too, am so glad you were able to have kids while in remission! :-) tc hugs, painter
i believe we are all connected;everything is connected on an atomic and subatomic level, so how can we be separate;how can one thing not affect another? another reason to be kind to each other...and to think before we speak. and to try to love one another or at least give up hatred for individuals. and i don't mean we should turn into Pollyanna .no way...we musk feel and acknowledge all our feelings;it's how  we handle them.   that is the hardest part for me, i:ve discovered. i don't like injustice & i don't stay quiet about it. sometimes i'm disliked for that. i can live with it...lots of practice.I was marching in the streets before a lot of you were born, so i think that tells you a lot. i'm not brave. but i care.and i try to help.  so do things like YOU do them;with the docs help
bob dylan said, "I aint gonna work on maggies farm no more            you all try to do the same;hold on to all the dignity you can& do as many things your own way as you can;of course swe have to deal with docs & so on, but we need to keep ourselves.


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 4/10/2006 6:41 PM (GMT -7)   
Hi artpainter. I'm glad you felt a little better last night. I have really bad fatigue and pain tonight, so I'm headed to bed. My son had a physical therapy appointment today and it's a 40 minute drive one way, so the travel really did me in and then I had to pick up some groceries. It's sad that the daily activities that most people take for granted make us feel like we are dying. My son's PT has been twice a week, but after next week we get to cut back to once a week.

Take care and I'll catch up with you tomorrow.

Diagnosis:  Suspected Lupus 2004; Raynauds 2006; CFS 1991; Mono 1985

Meds:  Plaquenil 400mg; tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 200mg; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

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