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Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 7/18/2008 7:46 PM (GMT -7)   
Hi All:

Just wanted to drop a quick note and vent. As most of you know I traveled to Atlanta to meet up with my fellow lupies. I had to admit the trip was probably more than I should have done. Ever since I've returned from GA I've felt pretty bad. I've talked to the Doctor and there's really nothing that we can do. I've taken every drug out there to treat lupus except for Arava and Gold. I'm not sure my Rheumy will even consider changing things at this time. As most of my labs are in the just barely above the normal range. My labs for my MDS are positive but their two different diseases and well......there's nothing to do but wait with the MDS.

I'm sleeping anywhere between 18-22 hrs a day. I fall asleep talking to my family, I'm just so fed up with things. I know my doctor offered for me to have a second opinion but I'm very worried because of my labs regarding my lupus are so good that they'd try to take away my dx of lupus. At least the Rheumy I do have, even tho he's a huge jerk, he believes I've got lupus or lupus type disease.

Anyway, sorry I don't respond to many of the posts, I'm just so totally wiped out. I barely know which way is up anymore. I hate my life, I'm done dealing with it now, I'm ready for something good to happen.

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


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 7/18/2008 7:57 PM (GMT -7)   
(((((((((( Barbara )))))))

Of course we understand. Don't worry about posting, sis . . . except for some updates. So glad you shared with us so we can keep you in our prayers.

So sorry you are still having such a hard time.

Hot tea for you!!

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


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 7/18/2008 8:08 PM (GMT -7)   
Barb. you must be psychic because I was just out here wondering how you were because I hadn't heard from you. If you have the energy, I think a second opinon would be good. I wish travel wasn't so hard on you. I would say Moffitt in Tampa and Mayo Jacksonville. You are sleeping alot. Are they sure you don't have an infection? the pain drugs mask alot of infection symptoms. When you get a second wind, maybe you can bug them about this. when I had that kidney infection for like a year, I got to the point I couldn't stay awake. Finally, when I couldn't walk to the toilet myself, the ER decided to give me the nasty "STD" dosing of "kill everything" antibiotics, and it helped.

I've been looking at what the government is spending the money they allocated for autoimmune disease on, what research they are doing. If you can't sleep, you might read that post, it will help.;) I'm sorry I missed you at Atlanta, I wanted so much to meet you but I was feeling sick and it's a good thing I didn't go because I wouldn't have wanted to get anyone sick.

I wish we could blink our eyes and have our problems solved, like Genie. All I can do is send lots of love and (((((hugs))))) and good things and prayers your way.
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 7/19/2008 7:14 AM (GMT -7)   
Barb,

Thanks for posting to let us know how you're doing. Don't even dare think about posting any other time. We understand, or at least we think we do, how sick you are and how much energy this takes. Hang in there sweet friend, and let us try to keep up your spirits. Look at the face of your beautiful daughter and smile. Remember that we all love you and think of you. And I'm praying for you Barb. I pray that you get some relief.

Love you,

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


Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1551
   Posted 7/19/2008 9:00 AM (GMT -7)   
Hi Barb. It was so good to see you in ATL and I'm very glad you made the trip. Feeling like crap since you returned is truely awful. I can really relate to your frustration re sleeping 20 hours a day. I recently went thru that for a few weeks. There is no joy in that life what so ever. I hope and pray you regain some strength SOON! I'm sending you lots of positive energy too! Love, Butterflake

Dx: SLE ('05), depression, diabetes, fibromyalgia, gerd, sleep apnea, hypertension, IBS Tx: CellCept, plaquenil, prednisone, lisinopril, actos, lipitor, nexeum, prozac, wellbutrin, seroquel, xanax, ambien, celebrex, neurontin, lyrica, arthritis tylenol, promethazine, actonel, multi vit, C, flaxseed oil, acupuncture
Donna
 


joinery
Regular Member


Date Joined Oct 2007
Total Posts : 323
   Posted 7/19/2008 9:16 AM (GMT -7)   
Barb.. Sorry to hear you are still so sick. Get the rest you need and when your up to let us know how you are doing.
Take Care. Debbie
Asthma,Lupus,H.B.P.,Dermatomyostis,Gastrparsis,Acid Reflux   
                Panic Attacks,Osteopenia,Thyroid  
  Reglan,Protonix,Synthroid,Plaquenil,Quinacrine,Flexeril,Zetia,Zoloft,Xnanx,Celebrex,Abuterol,  
  Advair,Diovan,Actonel,Prednisone on and off Eye Drops,VitaminD.     
 
 
 
 


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 7/19/2008 12:50 PM (GMT -7)   
(((((Barb))))) thanks so much for the update. I'm so sorry that you continue to feel so sick and that the docs can't do much of anything for you. I don't blame you for not wanting to see another rheumy because of the diagnosis thing - we've seen it happen to too many people here. Just know there are lot of us here who love you and care about you and please don't worry about not posting - we know that you are just too sick right now. I'm sending lots of love and hugs and prayers your way.
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.

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

 

Co-Moderator: Lupus and CFS Forums



mawmaw66
Regular Member


Date Joined Feb 2007
Total Posts : 102
   Posted 7/19/2008 3:53 PM (GMT -7)   
Barb.. I am so sorry your having such a rough time of it and I hope you get better soon. It was so nice to meet you in Atlanta and you will be in my prayers.

Love ya, Linda
Lupus, RA, OA, Raynard diseases, Hypothyroidism and a Breast cancer survivor.
Meds. Plaquenil,Synthroid,Lexapro,Mobic,Hydrocodon5/500 for sever pain.


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 7/21/2008 2:03 PM (GMT -7)   
Barb,
   I'm sorry the trip took so much out of you sweetie....(((Hugs))). I was afraid that would happen with you not sleeping much at all there and on the go. 
   I know when I talked to you the other day on the phone you were feeling pretty badly and so frustrated. My friend, you are always in my thoughts and prayers.
                                                                 Love you, 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.


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 7/21/2008 4:12 PM (GMT -7)   
Hi Barb, I hope you are feeling a little better or making some headway. Sending good thoughts and prayers your way.
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 7/22/2008 2:34 PM (GMT -7)   
I hadn't seen Barbara on in a few days and just called her. Her daughter said she went to the ER this afternoon. I didn't ask any additional questions, but if you would all send good thoughts her way....

Thanks,

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


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 7/22/2008 2:48 PM (GMT -7)   
((((((((((( Barbara ))))))))))

Hot tea, 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


joinery
Regular Member


Date Joined Oct 2007
Total Posts : 323
   Posted 7/22/2008 2:59 PM (GMT -7)   
Barb..
Thoughts and prayers are are comming your way. Wishing you well!! Debbie
Asthma,Lupus,H.B.P.,Dermatomyostis,Gastrparsis,Acid Reflux   
                Panic Attacks,Osteopenia,Thyroid  
  Reglan,Protonix,Synthroid,Plaquenil,Quinacrine,Flexeril,Zetia,Zoloft,Xnanx,Celebrex,Abuterol,  
  Advair,Diovan,Actonel,Prednisone on and off Eye Drops,VitaminD.     
 
 
 
 


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 7/22/2008 6:25 PM (GMT -7)   
Barbara was admitted to the cardiac ward this evening. There is suspicion that she might have had a heart attack, but no clear indication/conclusion yet. She is currently being watched closely and is being given oxygen...she says she has this immense pressure on her chest that is unlike anything she's felt before.

Since she's on the cardiac unit with all it's machinery, she doesn't have her cell phone, so there isn't a way to contact her right now. I'll let you know more when I hear more.

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


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 7/22/2008 7:30 PM (GMT -7)   
Lynn,
   Tks for letting us know whats going on. Barb called Karen too and I just got off the phone with her. She said basically the same thing as you. I hope and pray Barb will be okay and they will keep a very close eye on her. I will be looking for an update. Tks again!
 
Barb sweetie, I know this has got to be vary scary for you right now....((((Gentle Hugs))).  Hang in there and know that alot of prayers and positive thoughts are coming your way!!
                                                                         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 7/23/2008 9:21 AM (GMT -7)   
~Noon, EST

Just talked w/Barb - status about the same, with the same lovely military hospital service as always. (IE, not so great, not enough pain meds, etc.) They can't get a line in, except a small one in her wrist -- not big enough for the stuff they're trying to push through it, so painful. Crazy head dr still won't let them put a port in...sounds like she's been a pin cushion all night.

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


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 7/23/2008 9:27 AM (GMT -7)   
Lynnwood, thanks for all the updates.

((((Barb)))) I am praying you will be okay and that the docs will figure out what is going on with your heart. I'm upset for you about them not managing your pain well and all that you are having to go through. We are all thinking of you. I'm sending lots of prayers and love your way.
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.

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

 

Co-Moderator: Lupus and CFS Forums



AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 7/23/2008 1:26 PM (GMT -7)   
More hugs and prayers for you Barbara. *sighhhhh* I'm SO sorry this is so hard.

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


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 7/23/2008 2:17 PM (GMT -7)   
Thanks Lynnwood. (((((Barb))))) I'm so sorry you are going through this and I wish I could make it go away. I will pray for you and hope that you get a new head doc or he sees the light and does the right things for you and gets you well. Will also pray for strength for your family at this time. Miss you.
Marji
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 7/23/2008 7:32 PM (GMT -7)   
 Hi Everyone,
    I talked to Barb about 9:30 est. and she still had no anwers to the chest pain and pressure. She is very frustrated and in alot of pain. She needs alot of prayers and positive thoughts right now.
  Barb my friend, I'm very worried about you and it makes me so mad that they aren't doing more to find out whats going on. I hope you will demand a second opinion in the morning if your rheumy doesn't get the ball rolling or demand to be sent to a civilian hospital. I'm praying hard for you sweetie!! Love you, 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.


joinery
Regular Member


Date Joined Oct 2007
Total Posts : 323
   Posted 7/23/2008 9:41 PM (GMT -7)   
Barb: I wish they can give you an answer by tomorrow, you should not be this sick with no answers. You are in my thoughts and prayers. Debbie
Asthma,Lupus,H.B.P.,Dermatomyostis,Gastrparsis,Acid Reflux   
                Panic Attacks,Osteopenia,Thyroid  
  Reglan,Protonix,Synthroid,Plaquenil,Quinacrine,Flexeril,Zetia,Zoloft,Xnanx,Celebrex,Abuterol,  
  Advair,Diovan,Actonel,Prednisone on and off Eye Drops,VitaminD.     
 
 
 
 


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 7/24/2008 11:28 AM (GMT -7)   
Barb is still on cardiac floor, finally got a larger needle in. They'll do a CT scan, then move her up to a general floor later today. She told me something else, but I can't remember it...

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


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 7/24/2008 1:34 PM (GMT -7)   
From another thread, okie said...


p.s. just got off the phone with Barb, that did her CT scan. Getting ready to take her up stairs. She had just showered and was out of breath. (i can relate) anyway she will have her cell phone on when she gets settled for those who want to call her.


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
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 7/24/2008 3:35 PM (GMT -7)   
Barb,
 
More prayers coming your way.  I hope you're resting comfortably. 
 
Lots of love,
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, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 7/24/2008 5:55 PM (GMT -7)   
Just talked to Barb...8:49 est.
   They did the Ct and she has no blood clot.....they said she does have inflammation around her lungs....still no reason for the abnormal EKG!! She said they will probably send her home tomorrow.....Grrrrr!!!
   She is very frustrated and I'm really worried about them sending her home without checking out her heart! She has an appt with the plumonary doc tomorrow and said she will ask her to look at the EKG then.
   Just wanted to give you all the latest update. Barb said to tell everyone hello and ty for the prayers.
                                                                                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.

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