(((((((Barb)))))))

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PattyLatty
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Date Joined Mar 2006
Total Posts : 2570
   Posted 9/3/2008 5:33 PM (GMT -7)   
Barb,

I'm so sorry you're feeling so bad and that your life is so difficult for you. Every time I read your posts or talk to you I can tell that you hold out no hope for your future and although I hardly know how to respond to that, I so admire to strength and courage. You're always here for all of us even though you hardly feel good enough to get on the computer. And when I ask what I can do to help you all you ever ask for are my prayers.

I am praying for you Barb, and I'm also thinking about you a lot. I am happy that you take the effort to stay in touch and let us know how you're doing. You're special to me, and I suspect, to most of us.

Love you,

Pat
Lupus, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, tricor, acifex, multivitamin, calcium w vit D, fish oil, aspirin


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 9/3/2008 7:48 PM (GMT -7)   
Barb, I also wanted to let you know that you are always in my thoughts and prayers. I know that things aren't good at all for you. I always wish there was more I could do, but just know that I am always here to listen and to offer a shoulder to lean on or cry on.

Love,
hippi
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

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Co-Moderator: Lupus and CFS Forums



Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 9/3/2008 8:24 PM (GMT -7)   
I was thinking of you earlier today when I wasn't near a phone -- I seem to have missed you in chat this week. I hope your spirits are lightening a bit. Sending good energy, etc your way & HUGS besides!

I'll try to call you or catch you in chat soon, but Thursday we have company and Friday my power is scheduled to be out all day...please don't think I've forgotten about you! No chance, my friend.

Cheers,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone(was 15mg, now 8mg), Cellcept, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 9/3/2008 8:35 PM (GMT -7)   
We love you Barb and hope you're doing beter tonight. Lots of thoughts and prayers coming your way......
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, Tramacet, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 9/3/2008 8:47 PM (GMT -7)   
((((((((((( Barbara )))))))))))

Prayers, hugs and . . .

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 9/4/2008 10:02 AM (GMT -7)   
Hi Pat, Hippi, Lynn, Ginny, and Rosie:

Awwww.......thank you so much Pat for starting a thread just for me. I want to say thank you to each and everyone of you, for taking the time to let me know you're thinking of me. I hope you all know that I appreciate you more than you'll ever know. If it weren't for my HW family I think I'd be alone in the world.

I have to admit, I'm having a really difficult time with things. I feel overwhelmed, a huge burden, unwanted and unloved, alone, and mostly just so sad. I've started therapy with a social worker and we we're discussing death and my view points on it. We also talked about how God and suffering fits into this picture. He share his beliefs with me, and he believes in reincarnation and suggested that I've chosen the life I've had. This really disturbs me, and can't seem to figure out why would I want to suffer like I do. Why would I have chosen the childhood I had, the struggles I've had to face. It just doesn't make sense, I'm starting to think I'm loosing my mind.

All I know is I'm sick of being sick and I certainly don't want to feel the way I do. I don't want the outcome that my doctors are predicting for me. I'm so broken hearted I just don't know what to do. All I want is to feel better and not feel so alone. I can't help but think I'm dying a slow miserable death, and I'm doing it all alone. I feel like my family just doesn't understand. The in-laws think I'm a hypochondriac and really try to ignore I am around. I just don't know how much longer I can hang on.

Thank you all for the hugs, blessings, prayers, and just being there. I truly appreciate you all so so much. If I didn't have you all I'd have no one except my cat. I hope that you all are having a halfway decent day, and I pray for you all every night.

Hugs,
Barb
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 9/4/2008 4:09 PM (GMT -7)   
Barb,
   (((Gentle Hugs))), Bless your heart sweetie! Yesterday when we talked you were so depressed and lonely. My heart goes out to you, my friend. I truely wish there was something I could do to help ease your pain and suffering. I know I can't physically be there with you but, you are always in my thoughts and prayers.
   You are a true friend and I'm so happy we finally got the chance to meet in person. I hope we will be able to do that again in the near future. Please hang in there sweetie, I know its very hard right now. We are all praying for you and sending positive thoughts your way. Take care and update us when you can.
                                                        Love, Babs
 
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
Meds:arava,prednisone,plavix,aspirin,protonix,,zanaflex,xanax,
mirapex,advair,foxamax,Vytorin,folicacid,lunesta,Tramadol
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 9/4/2008 8:39 PM (GMT -7)   
I'm glad that your therapist has a belief system that works for him.

However, he has NO business trying to project it onto you!. I want very badly to bang him on the head!

Therapy is about YOU! Helping you identify and trust your beliefs! Helping you identify the acceptance, hope, etc. that you need to recreate a satisfying state of mind for yourself. Not an easy road for anyone, esp when we're chronically ill and have so little energy to use...

For me, I learned long ago when dealing with long periods of suicidal type depression that asking "WHY" is, to put it bluntly, simply impractical! There isn't anyone, anything, or any spiritual or religious believe that answers WHY to my satisfaction...why do bad things happen to good people, etc....but that's me. "Why", for me, makes everything worse and more difficult. Focusing on "how", what I can do, how I can do it, etc. is where my hope comes from. But everyone has to find what works for themselves.

Like the others, I do so wish/pray/envision a day where you can feel light, joyous, and pain & worry free. But so far, no one has passed me the magic wand. You are the very first on my list if one arrives.

You aren't alone, we are here. An old therapist of mine used to say "Feelings are not facts"...it takes some thinking about that to get your mind around, but is somehow comforting once you get the right perspective on it -- at least for me.

Hugs, my friend

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone(was 15mg, now 8mg), Cellcept, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 9/7/2008 3:44 PM (GMT -7)   

Barb, I love you. I want you to stick around. I want to get healthy and you to get healthy and we can go take a cruise and get wild and crazy! I know it's hard to think head but please hang in there. You know we talk on the phone and I know how tired you hard. How sick of it you are. I just pray that you will get the help you need soon. You deserve it. We all deserve it. I don't know what I would do if I couldn't call ya up and tell ya my problems or if I didn't hear your voice a couple times a week.

I love ya and I am praying for ya

your friend carol


 
Possible scleroderma.  stage 4 COPD,  Osteoporosis,osteoarthritis
Prednisone,plaquanil400mg,azythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, spirivia,aciphex,lasix,inderal,pot.chlor.,B12 
 Did you ever know that your my hero?
 
 


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 9/8/2008 7:49 PM (GMT -7)   
WHAT ???????????

RUNNNNNNN from this guy !!!! He has really done a huge NO NO in therapy!

I would also report him (IF you have an ounce of energy to accomplish that!) What nerve!!!

Prayers, hugs and . . .

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 9/9/2008 10:50 AM (GMT -7)   
Hi Babs, Lynn, Carol and Rosie:

Thanks for your well wishes, wisdom, and support. I have to tell you the past three week have seem like a living nightmare for me. Not only do I feel bad but things here at home are just plain and simple awful. I want to just run away and go sit on a chair in Figi and enjoy the ocean lapping at my feet.

I saw my dreaded Rheumy yesterday, and I received the lecture that we need to decrease the amount of pred that I'm taking. Apparently my bone scan from this year is 16% worse than last years. My rheumy wants me to cut my pred back to 5mg every other day. I have "NO" idea how I'll do this. I'm having troubles with pericarditis right now and I'm currently on 25mg of pred. Every time I try to drop below 10mg I end up with a bad case of pleurisy and end up in the hospital. I'm so frustrated, my Rheumy is so worried about my future health. It's like he's missing out on the predictions from the Hem/Onc office.

Ugh, I hate life and I don't need this right now. All I tend to do most days is cry. I've got to run to Dr's appointments or special errands until Friday. Come Friday morning I think I may stay in my bed with the covers over my head. Bill's on my nerves, Nikita is sick, and I'm feel overwhelmed and totally blue. I hope you all are having a better time than I am. Like I have said many times, I'm thankful for you all and I truly mean it, if I didn't have you all, I'd be all alone in the world right now.

Hugs,
Barb
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 9/9/2008 1:44 PM (GMT -7)   
((((((((Barb))))))))))

I'm so so very sorry you are struggling. I'm telling you what your social worker has no clue whatsoever! I'm shocked that he made such a blunder as to share his personal beliefs with you like that. Please hang in there! You are in my thoughts and prayers! Judy

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 9/9/2008 3:03 PM (GMT -7)   
((((((((( Barb )))))))))

I'm so glad you can come here and vent. Your life sounds unbearable right now. I know that you rely heavily on spiritual connection . . . . I think of you often and send you right straight up!! I'm asking God to hold you in the palm of His mighty hand right now. I know that we go thru things we don't understand, but I'm praying that you will develop a deep sense of peace about it all. I know that we never have the grace to deal with things ahead of time, but I'm praying that moment by moment you are feeling washed in His love and feeling a sense of peace that those around you do not understand. I feel for you deeply sis!

Hugs, prayers and . . .

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 9/11/2008 1:16 PM (GMT -7)   
Just a note to say I hope you are managing your busy week without getting too burned out!

Cheers,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone(was 15mg, now 8mg), Cellcept, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 9/11/2008 6:07 PM (GMT -7)   
Hey Barb, I hope you got all of your doctors' appointments and errands run and that tomorrow you can pull your covers over your head and crawl under there with a flashlight and a good book and ignore the problems of the world and the people who bother you. Make your own little Fiji for a few hours. We love you and think of you often. When you have a little more energy, let us know how what your docs had to say.

I hate that you're having to lower your prednisone to dramatically because I know what that's likely to do to you.

Don't forget Barb, you aren't alone.

Enjoy Fiji tomorrow.

Love ya,

Pat
Lupus, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, tricor, acifex, multivitamin, calcium w vit D, fish oil, aspirin


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 9/12/2008 6:23 PM (GMT -7)   
(((((((((( Barb ))))))))

*Rosie slips into Barb's bedroom to place fresh flowers and leave a nice hot bowl of chicken soup *

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Julia Hill
Veteran Member


Date Joined Mar 2008
Total Posts : 543
   Posted 9/13/2008 9:59 AM (GMT -7)   

Barb,

(((Hugs)))!  What is going on my friend?  I hope things are improving for you health wise and home wise.  I think you should make your own oasis and have a spoil Barb day.   Nevermind what that theropist said, he sounds like a quack.  None of us know why we are the ones dealing with serious illnesses.  I'm certain we didn't pick this for ourselves, that is nonsense.  When you are feeling down remember all of the people here that care about you and hold on to that.  I love and think about you everyday.  I have been busy with Steve as you know, but that doesn't mean I'm not available for you.  You know how to reach me if you you need me.

Love, Julia

 


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 9/13/2008 10:16 AM (GMT -7)   

 you are a very special lady! I hope you are being good to yourself today.

love ya



 
Possible scleroderma.  stage 4 COPD,  Osteoporosis,osteoarthritis
Prednisone,plaquanil400mg,azythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, spirivia,aciphex,lasix,inderal,pot.chlor.,B12 
 Did you ever know that your my hero?
 
 


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 9/15/2008 9:12 AM (GMT -7)   
((((((((((((((((((((((Barb))))))))))))))))))))))))))))))))
Forum Co-moderator - Crohn's Disease
We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants) 
Make sure your suffering has meaning...
All suggestions/options/opinions are caveated with please consult with your local health care provider...


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 9/23/2008 8:07 AM (GMT -7)   
Barb,

I've missed seeing you on the forum. I'm sorry things have gotten so much rougher for you and want you to know that I worry about your incessantly. Take care of yourself.

Love,

Pat
Lupus, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, tricor, acifex, multivitamin, calcium w vit D, fish oil, aspirin


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 9/23/2008 8:19 AM (GMT -7)   
Hey Barb . . .

I'm thinking about you and pray for you often. I know things are really rough for you and I just want you to know that you are dear to us.

((((((((( Barbara ))))))))))))

Hugs, prayers, hot tea, and . . .

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

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