Thought I was still in the hospital!

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okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 11/4/2009 2:12 AM (GMT -7)   
MAN!!!!!!!!, I woke up an hour ago grabbing my leg my feet are so swollen I feel like they are in a fire!. I was literally looking for the buzzer for the nurses station. The rash is all over my chest. I got about 20 mg of vicodin in me. I threw ice on my ankles. My throat is so tight. I havn't had this much pain since 06 when they put me on the plaq and steroids. Now they took me off for the transplant. My dr put me back on them 2 days ago and folks I gotta say.........I can't wait around  for the transplant. My quality of life is just to far gone. I surrender. Just make my time bareable.
I'm sorry I'm ranting but if I was on the movie "saw" I have no doubt that I would chop my legs off if I had to. Do you guys ever get that swollen?
thanks

systemic sclerosis sine scleroderma,sleep apnea,Megaloblastic anemia
what ever that is.
 
 


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 11/4/2009 5:56 AM (GMT -7)   
I was that swollen at the tail end of my pregnancy.
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, Sj√∂gren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence


crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 11/4/2009 6:50 AM (GMT -7)   
Carol, I am so sorry you are hurting so much. Wish I had a magic wand to alleviate
everyone's pain. Hope your swelling goes down and that you are able to feel alot more
comfortable. I do get swelling in my joints, escpecially my hands and feet but not to the
extent where it is extreme.

Sending you a gentle hug!

Robin
MCTD, Fibromyalgia, Raynauds, Osteoarthritis, Osteoporosis, Degenerative 
 Disc Disease, Hypertension, Migraines and Pseudothrombocytopenia MEDS: Methotrexate, Savella,Flexeril,Diltiazem, Boniva, Vitamins 


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 11/4/2009 9:01 AM (GMT -7)   
((((( Carol ))))) I am so sorry you are in so much pain, I wish there was something I could do. I cannot believe your doctors are letting you suffer like this, they should have never taken you off those meds, there was a reason you were on them, I know they had their reasons but it makes me angry and sad to know YOU are the one suffering not them! Hang in there my friend and hopefully the meds will kick in soon and you will start feeling better and feeling like your old self again!!!! Sending you much love, gentle hugs and prayers!
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Tramadol (as needed) and magic mouthwash (for mouth sores)


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 11/4/2009 11:10 AM (GMT -7)   
Carol, I just hate what you're going through. I hope you know to call 911 if you feel at all in any danger. Let us know how you're feeling so we won't worry.

((((Hugs))))

Pat
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 11/4/2009 11:38 AM (GMT -7)   
carol--
I'm so sorry you are going through this. I wish there was another center around, maybe with more compassionate doctors. I totally do not understand why you can't be treated while you wait, even if its just pred, since you will be getting gobs of it after the transplant. It doesn't make any sense to me at all. And if not pred, other meds should be an option. I just don't thnik they should HAVE to make you choose. Planty of people waiting for livers take meds to control their conditions.

I don't blame you. You have been through h*** with this and they seem to have done nothing to make it easier for you. I'm not real impressed with them. But maybe that's the way it has to be, though I just read an article about doctors lyingfor their patients to get them in to clinical trials, even lying about the medcations they took before or during the trial that were restricted.

There is somethng called a Compassionate Care Request that you and your doc make to get you the meds you need during a clinical trial, the same proceduer must be available for transplants. But I'm sure I wouldn't have made it as long as you did.

I'm just so mad at what they have done to you and so frustrated. But I'm sending prayers and wanting you to be out of pain and resting comfortably with the swelling and all gone.
Don't be afraid to call 911 if you need to, they get paid for this service and you are sick enough now that if you need to go, you need to be taken by them or at least someone who can get you there fast. Don't wait for someone to come home and find you sick, please. (((( I'm worried about you. ))))
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 11/4/2009 11:39 AM (GMT -7)   
Reading it again, I'm worried you are havingan allergic reaction and you need to get to the doctor.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


AmyTx
Regular Member


Date Joined Dec 2006
Total Posts : 185
   Posted 11/4/2009 7:32 PM (GMT -7)   
do you take any lasix or water pills? do you monitor your blood pressure much at home?? mine got that swollen one time and they admitted me to get the fluid out of my legs..i certainly hope you fell better and keep us posted..
Female: 37 yrs/old DX: Lupus (dx:'03) MCTD, Raynaud's, Antithyroid antibodies, Lupus Cebritis, Lupus CNS, Lupus Pneumonitis and Stage II Lupus Nephritis. mitral valve and tricuspid valve regurgitation, 9 tia's and one pontine stroke('06)Seizures('06), Photosensitivity since childhood, vasculitis, gangrene left thumb had amputated aug of 07,had mediport put in aug '07, Sjogren's, had left toe amputated in june of 2008. COPD dx oct 2008
Meds: Lisinopril,Keppra, Plaquenil,Prednisone 10 Mg/Day,Miracle mouthwash,Xanax, Darvocet, Xopenex inhaler, Xopenex Nebulizer, Spiriva, prevacid


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 11/5/2009 3:41 AM (GMT -7)   

Hi amy, yes I take it everyday. I just woke up at 3 am crying with a FLARE from hell. Soon as people start moving around I'm not going to wait I'm headed for the ER.

 I'll let ya know

gentle hugs carol



systemic sclerosis sine scleroderma,sleep apnea,Megaloblastic anemia
what ever that is.
 
 


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 11/5/2009 5:39 AM (GMT -7)   
Carol I am so sorry! I wish you luck at the ER and hope you don't have to wait too long. Hopefully they willl fix all the extra fluid and pain for you. Please keep us posted! You are very special to me and I will be praying for you extra today!!!

Love ya!!!!

AmyTx
Regular Member


Date Joined Dec 2006
Total Posts : 185
   Posted 11/5/2009 7:42 AM (GMT -7)   
carol i was coming back to tell you to go to the ER... please keep us posted...
Female: 38 yrs/old DX: Lupus (dx:'03) MCTD, Raynaud's, Antithyroid antibodies, Lupus Cebritis, Lupus CNS, Lupus Pneumonitis and Stage 3 & 5 Lupus Nephritis. 9 tia's and one pontine stroke,Seizures, Photosensitivity since childhood, vasculitis, left thumb and toe amputated from raynauds, Sjogren's
Meds: Plaquenil,Prednisone 30 Mg/Day,Miracle mouthwash,Xanax, Darvocet, Xopenex inhaler, Xopenex Nebulizer, Spiriva, prevacid, aspirin 325mg


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 11/5/2009 8:32 AM (GMT -7)   
Carol's on her way to the hospital. She sounds pretty bad. I'll keep you posted.
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex


AmyTx
Regular Member


Date Joined Dec 2006
Total Posts : 185
   Posted 11/5/2009 9:33 AM (GMT -7)   
please keep us posted... hope you feel better soon carol
Female: 38 yrs/old DX: Lupus (dx:'03) MCTD, Raynaud's, Antithyroid antibodies, Lupus Cebritis, Lupus CNS, Lupus Pneumonitis and Stage 3 & 5 Lupus Nephritis. 9 tia's and one pontine stroke,Seizures, Photosensitivity since childhood, vasculitis, left thumb and toe amputated from raynauds, Sjogren's
Meds: Plaquenil,Prednisone 30 Mg/Day,Miracle mouthwash,Xanax, Darvocet, Xopenex inhaler, Xopenex Nebulizer, Spiriva, prevacid, aspirin 325mg

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