i am so sick and so sore and so sick of being sore I feel like screaming and screaming until all the air is drained out of my body.
Oh Lala land, do you have any available rooms?God have mercy on me for wishing life were shorter because that is not really what i want. i just want to stop hurting. And if that is not possible, then i wish i could hurt for a good cause---you know, like the cause for a cure so that future generations will not have to worry about Lupus.
i was re-listening to this song and thinking of Lupus as "the sombody I used to know" of course this is a bad-love song and lupus is not a lover, good or bad. It is just a stickin flip floppin' crass n brassy life-theivin' n'er do weller wham wham always hits ya when you're down Dis Ease.
still...it seems to fit somehow...
its not a perfect fit, (the illness playing the part of the bad in a bad relationship.)..and if i could get the poison out of my system and say for real that lupus is a used-to-know, i know i would go and not look back. i am fed up.
i fired my doctor today. she was heaping insult upon my injuries. (As if an autoimmune disease did not do enough to break its host down.) I did not need her insults and incredulous gasps when I made my timid report of sympotms.
Ah...but it helps to let the lyrics of this song pluck away at all the mean things people say...I am just glad I am singing it as I walk away....away....away.
[Gotye:] Now and then I think of when we were together Like when you said you felt so happy you could die Told myself that you were right for me But felt so lonely in your company But that was love and it's an ache I still remember
You can get addicted to a certain kind of sadness Like resignation to the end, always the end So when we found that we could not make sense Well you said that we would still be friends But I'll admit that I was glad it was over
But you didn't have to cut me off Make out like it never happened and that we were nothing And I don't even need your love But you treat me like a stranger and I feel so rough No you didn't have to stoop so low Have your friends collect your records and then change your number I guess that I don't need that though Now you're just somebody that I used to know
Now you're just somebody that I used to know Now you're just somebody that I used to know
[Kimbra:] Now and then I think of all the times you screwed me over Part of me believing it was always something that I'd done But I don't wanna live that way Reading into every word you say You said that you could let it go And I wouldn't catch you hung up on somebody that you used to know
[Gotye:] But you didn't have to cut me off Make out like it never happened and that we were nothing And I don't even need your love But you treat me like a stranger and I feel so rough And you didn't have to stoop so low Have your friends collect your records and then change your number I guess that I don't need that though Now you're just somebody that I used to know
[x2] Somebody (I used to know) Somebody (Now you're just somebody that I used to know)
(I used to know) (That I used to know) (I used to know) Somebody
Janice, i'd never heard that record before but so true are the lyric's and i'm so sorry to hear of what your specialist had to say...such stupidy well if it's not breaking we down it's sending we crazy with pain and more.
Before i met my husband i'd faced quite alot along the way and never thought love would come to how i wanted it to truely be and this was my no'1 record i was so addicted to listening to, as life was a battle and felt empty, as i never wanted to carry on and i get that way now sometimes...lifes such a cruel world at times.
Hi Janice, you are not alone we are here for you…I know im still getting to know all of you but you seem to be one special person, I can feel your love and pain thru your words…b strong and remember to have faith!!!.. Hugs and kissesssssss…muahhhh!!!..
Tez_20 said:
Janice,
I find it such a touching record…where you can only hope for the love you need in whatever situation plus the trials your going through. xxx
I am so sorry sweety. I know u are in so much pain right now! I wish I could take it way amd make it all better. I will be thinking of you this weekend when I am going to the Lupus Walk Now.
hey tez, thanks for checking in on me...i am still sick and tired but not so upset about it. It really helps to have the support of you and the others here. thank you so much for asking...And how are you?
Janice, we are so similar.. there are nights that I just lay in bed and tell the good lord that if this is how my life is going to be then please just let me go now. But then I snap out of it, see I have 2 boys that are still growing and although they know I am sick and can't do alot with them, they still depend on me for certain things. I pray that you start feeling better soon !!! Hugs Bethany
Sorry i've not been on all day and i really do know what your going through because if i was to add threads on the issues i've had since i've been diagnosed and before besides operations and biopsy's i've mentioned to beverly it's a right miserable life at times but like i stated i'm that highly drugged plus each tablet makes you sleep so it's hard to advise and i've been on the sleeping tablet lark in the past and i must have an addictive system an amount only works so long and it's graving more, same goes with anti-depressents so they stopped the lot with me.
Lastnight was a nightmare for me had all the same chest pains again and my eyelid dropped, ste got worried but i went to bed not long after, this morning my hands did'nt feel mine all swollen with cuts off the raynauds besides my joints hurting bad and if i sit and get up my body's cramped up "Oh well life goes on"
janice said:
hey tez, thanks for checking in on me...i am still sick and tired but not so upset about it. It really helps to have the support of you and the others here. thank you so much for asking...And how are you?
Sorry i've not been on all day and i really do know what your going through because if i was to add threads on the issues i've had since i've been diagnosed and before besides operations and biopsy's i've mentioned to beverly it's a right miserable life at times but like i stated i'm that highly drugged plus each tablet makes you sleep so it's hard to give advise and i've been on the sleeping tablet lark in the past and i must have an addictive system an amount only works so long and it's graving more, same goes with anti-depressents so they stopped the lot with me.
Lastnight was a nightmare for me had all the same chest pains again and my eyelid dropped, ste got worried but i went to bed not long after, this morning my hands did'nt feel mine all swollen with cuts off the raynauds besides my joints hurting bad and if i sit and get up my body's cramped up "Oh well life goes on"
janice said:
hey tez, thanks for checking in on me...i am still sick and tired but not so upset about it. It really helps to have the support of you and the others here. thank you so much for asking...And how are you?
Wow, such powerful words Janice, and I mean yours. The song is powerful too, but your words brought tears to my eyes...why? Becuz I too know that dark place that you have been in. I am rather new here and don't know ppl by names yet....or their situations, but as I read this I felt as though I was getting to know you somewhat. I hope that you are in a little brighter place now. I have been in a "funk" myself so I guess that's why those words seemed oh so familiar to me. I hate feeling like this becuz I feel as though I am feeling sorry for myself ;( I have a broken back and numerous other injuries to my spine, but the broken disks are from the Prednisone(Lupus) I have been taking for about 2 yrs causing Osteoporosis, hence my crumbling back. There are already soooo many things I can't do becuz of my back, but then to feel like I'm on another planet, running these fevers, swelling up like a baloon, every joint in my body screaming at me, sleeping and feeling like I can't wake, and feeling so sick that I can't sleep! Taking hands-full of pills.....well you know the story and I'm sorry I've gone on so much here. I guess I just wanted you to know that you are never alone....there are so many here that share your thoughts and feelings....and I am one of those ppl....Thank you for sharing and plz....FEEL BETTER <3
My god mate you are going through some issues which the prednisone as caused..di they offer you a tablet which counter reacts these problems and also Osteoporosis, they offered it me and knowing i have epilepsy wanted me to take the tablet also because of falls but i refused the prednisone in general being a steriod.
It does'nt hurt to go on your releasing bulit of stress and tension with what your going through and we all know how you feel otherwise as we have it daily.
((Hugs and kisses your way)) Terri xxx
Angel312 said:
Wow, such powerful words Janice, and I mean yours. The song is powerful too, but your words brought tears to my eyes...why? Becuz I too know that dark place that you have been in. I am rather new here and don't know ppl by names yet....or their situations, but as I read this I felt as though I was getting to know you somewhat. I hope that you are in a little brighter place now. I have been in a "funk" myself so I guess that's why those words seemed oh so familiar to me. I hate feeling like this becuz I feel as though I am feeling sorry for myself ;( I have a broken back and numerous other injuries to my spine, but the broken disks are from the Prednisone(Lupus) I have been taking for about 2 yrs causing Osteoporosis, hence my crumbling back. There are already soooo many things I can't do becuz of my back, but then to feel like I'm on another planet, running these fevers, swelling up like a baloon, every joint in my body screaming at me, sleeping and feeling like I can't wake, and feeling so sick that I can't sleep! Taking hands-full of pills.....well you know the story and I'm sorry I've gone on so much here. I guess I just wanted you to know that you are never alone....there are so many here that share your thoughts and feelings....and I am one of those ppl....Thank you for sharing and plz....FEEL BETTER <3
Hi Tez, thank you so much for your kind words......they help ;) As far as me venting on here I guess I feel a bit funny becuz I don't know ppl too well and I'm not sure how they may react....they may think I'm "whining" and complaining, and may feel that (as I sd) I'm feeling sorry for myself and should have a more positive attitude. I do thank you for reminding me that everyone here does understand becuz they have their own dark places and pain to bear. Again, thank you so much for thinking enough to write and share your feelings.....
The steroids...ugh!. When I was in the hospital(one of five times in 3 mos) they had to start me on celumedrol (sp?) and the prednisone, and they also started me on Cellcept for the Lupus...The Lupus had attacked my lungs and I had Lupus related pneumonia.....so I had no choice at the time. My Rheumy told me I could not stop the Prednisone or I would be right back in the hospital. That's also when they found out I have RA. Sometimes I feel like dumping all my meds down the toilet...but I know that I would not be able to get out of bed and would be in the hospital. OK, as usual I've gone on and on, and I apologize for that...take care and I hope that you have some good moments when you can tolerate your symptoms....the angels are with you....
No it's best to discuss issues and also had thread's where member's will be able to help if possible and also give full support...that's all the point to you joining and offering experience to what your going through and also expressing yourself...i mean i've got a very supportive hubby but i do know if i need to release myself otherwise i've come across such a great second family and friends.
See straight away i've had your symptoms but without the prednisone...it's in my lungs badly and i still smoke it helps my depression even though it is in the mind and i will admit that and my lungs swell out at the back and my god the pains terrible at times and i've had pleurisy 3 times and it's scared my left lung and i've had pneumonia twice but i had all this before i was diagnosed 5yrs back...i wont touch steriods through being on them years back.
Well i've been in the day unit in hopsital...my joints are bad it's now gone into my ribs so i was prescribed plaquenil and i've been on it over a year and it does'nt work and come tomorrow night i start taking Dapsone, it's for the skin and also Arhtristis but my heads dreading any side affects as the plaquenil made me ill and i pulled off it and my rheumo said i'd got to get back on and someone told me take it at night your sleeping the affects off which i've done and i had hardly any affects.
Please don't dump your meds although it's stressing you, i'd be in a right mess if i thought that way as i've been taking meds heavily since i was 18 and i'm coming 44 this year.
Don't apologize as you've not gone on, you've stated what you've gone through and how you feel...so get involved with more threads inthis way as your showing member's your experience and what you go through.
((All my love to you Angel & i'm thinkingof you dearly)) Terri xxx
Angel312 said:
Hi Tez, thank you so much for your kind words......they help ;) As far as me venting on here I guess I feel a bit funny becuz I don't know ppl too well and I'm not sure how they may react....they may think I'm "whining" and complaining, and may feel that (as I sd) I'm feeling sorry for myself and should have a more positive attitude. I do thank you for reminding me that everyone here does understand becuz they have their own dark places and pain to bear. Again, thank you so much for thinking enough to write and share your feelings.....
The steroids...ugh!. When I was in the hospital(one of five times in 3 mos) they had to start me on celumedrol (sp?) and the prednisone, and they also started me on Cellcept for the Lupus...The Lupus had attacked my lungs and I had Lupus related pneumonia.....so I had no choice at the time. My Rheumy told me I could not stop the Prednisone or I would be right back in the hospital. That's also when they found out I have RA. Sometimes I feel like dumping all my meds down the toilet...but I know that I would not be able to get out of bed and would be in the hospital. OK, as usual I've gone on and on, and I apologize for that...take care and I hope that you have some good moments when you can tolerate your symptoms....the angels are with you....
Awww Tez, your words are so kind and really provoke me to think about this thing....Lupus and it's strange ways. It touches so many aspects of our lives and since ppl don't see it, they don't understand it unless they are going through it themselves. I have not heard of Dapsone, but I will read up on it. I am on Cellcept currently for the Lupus symptoms, and not sure how much it is helping, but this is the longest that I have stayed out of the hospital....yeah! The thing that really gets me down right now is the fevers and the joint pain and of course the broken back issues and all the other issues w/my back....ugh This keeps me from sleeping. You know how a fever makes you restless and just plain yukky?(lol) It seems that every evening around 5ish, the temp starts creeping up, and doesn't go too high...usually up to 100.0, only once in a while will it go up higher.....this goes on all night until around 5 or 6am...then I'm so exhausted I can't sleep. grrrr. Sometimes I can nap, sometimes not. Not sure what to do on that one, but I see my Rheumy this week. I am so sorry to hear about your lungs and the pain you have. It seems so unfair that this group of ppl have to deal with the symptoms of this horrible disease...it's sneaky and sometimes so overwhelming.
My husband is awesome and does so very much for me...well practically everything as I just cannot stand for but a few minutes and the pain causes me to have to sit. I try to do what i can sitting, but even that becomes untolerable after a bit. I do like coming here to "listen" and to "talk". It helps to vent I admit. My husband is always willing to listen, but I know that after getting up at 2:00am and getting home at 5:30pm, he's exhausted and doesn't always need to hear my "stuff", and the ppl here have experienced some or all of my problems and I think that's therapeutic for me...it just feel strange at first to tell all of my problems to strangers....you know what I mean right? Anyway, I truly have gone on enough here....lol
Again, I thank you so much for your kindness and information that you give...you are truly helping someone in need. hugs...gentle hugs,
Janice, I just wante you to know that I wasn't trying to hijack this thread and if you felt that i did, I apologize. I"m fairly new and when I start venting...well as you see I just keep going on and on and don't mean to take away from your words....becuz they are so meaningful.
