Keep retaining fluids

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okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 4/21/2008 1:31 PM (GMT -7)   
Hi everyone. I'm sorry I havn't been around much. I've been having a lot of chest pain and fluid retention. Doctor put me on lasix. 20mg. once a day. It's doing nothing. I'm waiting for a call back to either increase  the dose or change the meds. My feet hurt to walk. I take off my socks and you can tell where the fluid is cutting of my circulation. Up and down fevers between normal and 100. Breathing stinks. I'm so tired. It is actually becoming normal to set at the computer and fall asleep setting up. My knees hurt when I walk. It's a pain deep inside I can't really tell exactly. All I know is it hurts. It's been abot 10 days since I tok a shower. I have to wait until tomorrow when my home health care lady comes over so she can help me especially to wash my hair. My doctor's nurse told me to go to urgent care becuz my doc is all boooked up. The urgent care doesn't  take my insurance and I can't afford to pay it upfront. I can't even go to church. By the time I get ready I am too tired to go. I can't do this anymore. I have tried to be possitive and say this too shall pass but I'm beginning to wonder. Every time I go to the hospital they take a lok at my xrays and put me in. It's very rare they will just give me somthing and send me home. I thought I was going to have a heart attack just moving my clothes from the washer to the dryer. i'm so tired.
why is this happening? In the time it took me to type this I had to stop 3 times to close my eyes and rest a few minutes. Am I dying?
thanks for reading
love ya
carol
God Bless
Lupus like symptoms, stage 4 COPD w/CHF,  Cancer survivor.  Osteoporosis,osteoarthritis
Prednisone,Plaquanil800mg,vicodin 4x5mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax 1.0 x3,Singular,nitro spray, aciphex, percocet 10mg.x4.,lasix,inderal,pot.chlor.,B12 
I will never leave you nor forsake you!
 
 
 


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 4/21/2008 2:24 PM (GMT -7)   
Okie,
So sorry you are so miserable. I have been in the same boat. I take up to 120mg of lasix. (Please don't do this without your doctor's permission) My doctor also just added Zaroxolyn, another type of diuretic. Hang in there. You just have to get the fluid off! Love ya, Judy

jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 4/21/2008 5:36 PM (GMT -7)   
((((( Carol ))))) bless your heart, I am so sorry you are feeling so terrible. I think the doctors need to get to the bottom of your problems and get you better. I know it's hard to function when you are so ill, what have your doctors said? Maybe another doctors opinion is needed or some changes in your meds, I am sorry I don't know what to say Carol, I just want you to know you are in my thoughts and prayers. Hugs and love to you!
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's, Celiac Disease, Raynaud's, Lupus and Sjogrens
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Lortab (as needed) and magic mouthwash (for mouth sores)


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 4/21/2008 8:38 PM (GMT -7)   
(((Carol)))
    I'm so sorry to hear you are feeling so badly sweetie! I can tell you are scared by your post....(((hugs))). Don't let the doctor put you off...you sound like you need some immediate relief.
   It's very hard to stay positive when you are so sick. I pray things turn around for you quickly.
   Hang in there and please update us when you can. You are in my thoughts and prayers.
                                           Love ya, 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.


Snickerdoodle
Regular Member


Date Joined Aug 2006
Total Posts : 142
   Posted 4/21/2008 10:09 PM (GMT -7)   
I am sorry you are feeling so miserable! I hope your Lasix starts to work soon. Lemon juice, caffeine, coffee, and tea are natural diuretics. Maybe you can supplement some of those until you can see your MD. Make sure you watch your potasium untake too. Lasix's causes your K+ level to drop which can make you feel worse! Good luck!
Melissa
Dx: UCTD,Raynaud's,iron deficientcy anemia,proteinuria
Rx: Multi-rec folic 500, Celebrex 200 mg, Plaquenil 400mg, Ultram PRN


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 4/22/2008 12:10 AM (GMT -7)   
Hi Judy, Stacie, Bab's,and melissa. Thanks for the support ladies. You are my angels. I am sure I am not going to die. Well with the heart pressures I do get a little nervous. Right now I just feel like a big mass of inflamation. I do have a respatory therapist coming out to see me. So Ill have himtake a listen my heart an lungs. I sure that will ease things on my mind. Well I guess I better get off of here since my brain is going down hill and my eyes are closing.
God Bles
carol
God Bless
Lupus like symptoms, stage 4 COPD w/CHF,  Cancer survivor.  Osteoporosis,osteoarthritis
Prednisone,Plaquanil800mg,vicodin 4x5mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax 1.0 x3,Singular,nitro spray, aciphex, percocet 10mg.x4.,lasix,inderal,pot.chlor.,B12 
I will never leave you nor forsake you!
 
 
 


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 4/22/2008 1:08 AM (GMT -7)   
(((((((((( Carol ))))))))))
Have your son, or brother or other friend or family member call the doc FOR you and explain how bad you are. You can't ignore this. The doc's office may fit you in or they may figure out another option for you. Please don't wait another day to get things checked out.

Will be looking for updates when you are up to it.

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, Crohns, Diverticulosis, Sjogrens

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


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 4/22/2008 3:32 AM (GMT -7)   
Please please try and get seen. You might be better off in the hospital than at home until they figure out what is wrong and find a way to make you feel better. If all else fails go to the ER, please you need medical attention.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin, Imuran, Procardia, Prilosec


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 4/22/2008 7:17 AM (GMT -7)   

Thanks for the advice everyone, I know I need to do somthing but I just feel pretty wakey at the moment, can't get my thoughts in focus. I'm sorry I guess that makes no sense. I do have  my nurses aid coming this morning. She can help me get a shower. I'm sure that will help me too. Plus this afternoon my o2 dr. will be here. Than I'll find out more about what is going. on. I'll let ya know.

love ya

carol


God Bless
Lupus like symptoms, stage 4 COPD w/CHF,  Cancer survivor.  Osteoporosis,osteoarthritis
Prednisone,Plaquanil800mg,vicodin 4x5mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax 1.0 x3,Singular,nitro spray, aciphex, percocet 10mg.x4.,lasix,inderal,pot.chlor.,B12 
I will never leave you nor forsake you!
 
 
 


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 4/22/2008 9:25 AM (GMT -7)   
Carol,

I've never heard you sound so weak and depressed. I agree with Rosie that someone else may need to call your doctor for you. I also hope you'll share what you've told us with your nurse and the o2 dr. that are coming over today. Don't let something like this go. Thanks for posting and letting us know what's going on even though you don't feel like it. Do you have a friend who can bring you dinner and sit with your tonight? I hate to think of you being alone when you're feeling so bad.

I'll be praying for you girlfriend.

Love,

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


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 4/23/2008 9:59 AM (GMT -7)   
Hi Carol:

First off nice gentle (((((hugs))))) for you. When I spoke with you yesterday you sounded so down and so weary. I'm so sorry my friend that you're feeling so poorly. I tried to call you about 1 hour ago but I got your answering machine, I hoping this means that you've got a spot with the doctor and you're being seen as I write this post.

I understand your feeling of wanting to give up, I truly do Carol. I'm going to say the same thing to you that you said to me when I was ready to give up. There are lots of people who care about and love you. You can't give up the fight. Yes, I know it's hard to breath, and I know the fluid and swelling is terrible, I know it's hard to not get weary and fed up with this stupid disease. But, you need to hang on for those of us who are here and pulling for you. We'd miss you oh so much if anything happened to you.

Do like Rosie said have your brother call your doctor, let someone else help you. Call him and let him no how badly you need help. I know it's hard to ask for help but please ask anyway. I hope that the doctor can get your situation figured out soon and that you'll be back to feeling half way decent real soon. Remember what I said if it even means going into the hospital for a bit, that's okay they'll take real good care of you there.

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


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 4/23/2008 11:53 AM (GMT -7)   
Carol, I feel bad that you are so sick - I'm so sorry to hear how sick you are and that you aren't able to see your doc. I agree with the others about having someone else step in and call - maybe one of your home health people? I've never been as sick as you, but I do know that when I feel the sickest is when it's hardest for me to try to make an appointment - it just seems overwhelming.

You've got lots of us here praying for you and thinking of you. Hang in there.

Lots of love and hugs
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; 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



mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 4/23/2008 1:24 PM (GMT -7)   
Carol,
    ((((Hugs))) I hope you have gotten some medical attention by now and feeling a bit better. Please update us when you can. You know how we worry. You are in my thoughts and prayers.
                                               Love ya, 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.


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 4/23/2008 3:46 PM (GMT -7)   
Hi All:

I spoke with Carol earlier today and she has decided to go to the hospital. She had been coughing so bad, she thinks she may have cracked a rib. She was feeling really down and was honestly out of it. She said her oxygen saturation was at 86% with oxygen on. Carol said she'd call me if they keep her in the hospital. Please keep Carol in your thoughts and prayers.

Carol hang in there, we're pulling for you and you'll feel better after the doctors help you some. I know you don't want to be in the hospital, but I truly think that's where you need to be.

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


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 4/24/2008 6:49 AM (GMT -7)   
Hi All:

Just spoke with Carol, she did go to the ER. They sent her home, the Dr. that saw her was a huge jerk apparently. He didn't take an x-ray of Carol chest. He did do a blood gas on her and it showed that she wasn't getting enough oxygen. He gave her some solumedrol and sent her home.

Carol said that the swelling is terrible in her feet and that she was going to call her regular doctor. So I'll give her a call after I see my doctor at 11 am and get back home. I sure hate that she got the run around at the ER.

Carol you hang tough sweetie, we're all pulling for you. I'll talk to you soon.

Love,
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 4/24/2008 8:43 AM (GMT -7)   
Barb, Tks for updating us on Carol. I hope your appt goes well today...((Hugs)).
Carol,  I'm sorry you didn't get the proper treatment at the ER sweetie....(((Gentle Hugs))). I hope the Solumedrol will help some with your breathing. Hang in there and take care. You are in my thoughts and prayers.
                                                  Love ya, 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.


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 4/24/2008 9:45 AM (GMT -7)   
DARNED IT ALL!!!

Thanks so much Barbara for updating us on Carol.

Carol . . . I'm SO sorry the ER couldn't/wouldn't do more for you sis. *sighhhhhhhh* Its just so hard to watch you struggle so. I sure hoped they would have been more help.

I'll be watching for updates and keeping you in prayer sis.

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, Crohns, Diverticulosis, Sjogrens

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 4/24/2008 3:13 PM (GMT -7)   
Hi All:

Carol really needs positive energy and prayers. She sounds terrible and is refusing to try the ER again. She called her doctors office and they called at 3pm and informed her that her doctor left for the day. She'll not know anything until tomorrow. Just keep Carol in your thoughts and prayers she really needs it.

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


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 4/24/2008 11:51 PM (GMT -7)   
This is just plain horrid. The fact her O2 levels were low on blood work should have resulted in immediate hospitalization. The ER doctor needs to have a complaint filed against him and perhaps even be sued for malpractice. He put her life in danger and she could suffer brain damage from low O2 levels.

I will be praying and sending positive thoughts and energy to Carol. Someone needs to go find these idiot doctors and use more than a pointy stick on them. Sorry, I have just heard too many things like this in the last week or so.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin, Imuran, Procardia, Prilosec


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 4/26/2008 8:33 PM (GMT -7)   
Dear Barb, I just wanted to say thank you for your constant suport this past week. I was pretty scared. Thank you for updating everyone as well.
 
Hi all, I really am not up to much talking. The salumdrol has been doing it jobs. It took a couple of days before it started to work. I'm finally feelin thee garbage move around. I still have no idea about the rib but since I broke 2 before i know there is nothing that can be done but time. I've only  been awake about 45 min. all day. dr. increased my lasix my ankles disappeared. she put me on levaquin along with the z pak that I always take. along with prometh/codien with is terrible tasting syrup. at least today I can breath. Which probably helped me get so much sleep today. I was shocked that I got up and hand coffee this morning and went back to bed. I didn't wake up until 6:30 this evening. got a drink and went back to sleep. woke up at 10:00.
I lost a little friend of mind yesterday. His name is Keenan. I met his grandma when I first moved here. hee would come over and play on my puter all the time. He and I would take quad rides around the neighborhood. 1 1/2 years ago he was diagnosed with a tumor attached to his eye. they got rid of it. than he got two more small ones and they got them. recently they found another in his brain. He got treatment and they were giving his a break before hhe did more experiment treatments. So 3 weeks ago he came over and gave me this huge bag of tomatos his mom had gotten. He gave me a big hug about 5 times. Said he was able to get back in classes and was even on the track team. He was so happy. Than I got the call. He passed away. I don't understand. he was such a gift, it's just not fair.
Well my case worker is bring in nurses more often to keep and eye on me and wants to have my home care everyday excet sunday. even if it's just to have some one to talk to. and be around maybe cook some meals. that will be good. My chest is hurting quite often these days but hopfully the less I cough the better it willl get.
I guess that's all I have to say for now. except thank you all so much for your support. I will keep you informed and try to catch up with everyone and see what has been going on with you. I just neeed to have a ew more days to get feel better first.
God bless and thanks again everyone
love carol
 
God Bless
Lupus like symptoms, stage 4 COPD w/CHF,  Cancer survivor.  Osteoporosis,osteoarthritis
Prednisone,Plaquanil800mg,vicodin 4x5mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax 1.0 x3,Singular,nitro spray, aciphex, percocet 10mg.x4.,lasix,inderal,pot.chlor.,B12 
I will never leave you nor forsake you!
 
 
 


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 4/27/2008 6:21 AM (GMT -7)   
Oh Carol, I'm sorry for everything you have been through with your health and with the loss of your sweet little friend. I don't understand why things like that happen. I hope the meds do their job and that you can get through this without having to go into the hospital. I'm glad home health is coming in more often - then at least they can maybe help with determining if you might need to see your doc or go to the ER.

You are always in my thoughts and prayers. Lots of love and hugs,
hippi
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; 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 4/27/2008 11:38 AM (GMT -7)   
Hi (((((((((( Carol )))))))))),

so glad for the update.

So sorry your lost your young friend. Sometimes God puts really special people in our lives and they aren't always there very long . . . I'm glad you got to enjoy his company while he was here.

You sound just whipped! Sleep is good. I'm glad you've got someone coming in most days to keep a good check on things. I hope you continue to improve.

When is your next doctor appointment??

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, Crohns, Diverticulosis, Sjogrens

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 4/28/2008 4:18 AM (GMT -7)   
Hi Carol:

I'm glad to hear that you're feeling a bit better, this is good news. I'm sorry about your little friend tho, I'm sure that it's hard to handle. I think it's great that they'll have the nurse come more often and the home care people too. I feel bad about your rib but you're correct there's not much they can do about it.

I'm sorry I've not called you this weekend. I have to say that last week I was having my own health issues as you know. The doctor wanted to admit me on Friday and I refuse as I needed to be home this week. I'll see my Dr. again on Wednesday. Then we'll see if I'm still in need of being in the hospital.

I hope you continue to improve and I'll give you a call later today sometime.

Love,
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 4/28/2008 11:46 AM (GMT -7)   
(((Carol))),
    I'm glad to hear you are feeling a bit better. It sounds like you still have a ways to go though sweetie. You keep resting and building your strength back up.
    It's great that you are getting home healthcare more often. You really need them there to monitor you on a daily basis. As well as help with daily needs.
    Hang in there and update us when you can. You are in my thoughts and prayers.
                                                     Love ya, 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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