any updates on okie (carol)

ive been looking around for an update on carol does anyone know how she is after going to the hospital??? just worried..

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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

Carol's still in the hospital and hopes to go home tomorrow. Her breathing is very labored but she's able to talk on the phone. I've pressed her to get the doctor to be specific with her as to what's going on. She has bad edema that's causing splits in her feet, and bloody pin pricks on her legs. The problem that she has is her memory and the ability to ask the right questions and remember the answer. Sound familiar? I understand what that's like. Maybe I'll get her to write down some questions and ask th doctor to answer them as she writes down the answers. They are pumping her full of lasix and prednisone and we know how much water retention one gets while on prednisone.

She's also awaiting a move into her own place. I hope that happens soon because her SIL, a real piece of work, still tries to take advantage of her. It boggles the mind. If I'm able, I'll go up and help her get settled. Her spirits sound good, but she also sounds real tired.

More later.

Pat

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<sub>SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex</sub>

i had a doctor one time in the hospital when i was getting confused handed me some paper and told me to write the questions down.. sorry she is doing so poorly..do they think the bloody pin pricks on her leg is petichia(sp? or vascultis? i certainly hope she feels better soon.. and shame on her SIL.. keep us posted... thanks for updating

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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

God Bless Carol!!! Please tell her she is in my thoughts and prayers!! Judy

I really hope she is doing better. Her SIL sounds like a piece of work.

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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, 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

Carol and I just had a long conversation about her health and her situation. She has taken herself off the transplant list and is going on hospice when she gets out of the hospital. She's not sure when that will be but could be as soon as this afternoon.

Her main issues are COPD and scleroderma. She's now having problems with her bladder. Her body is making urine, but her bladder won't eject it, which is why she has a catheter. She's also severely depressed, as would be expected. She isn't getting support from her family, which is nothing new, and seems to blame herself for that. I convinced her that that's about them and not her.

She needs our support more than ever. I asked her what we could do for her, and in typical Carol fashion, she said, "Prayers, and if you're agnostic, then send money.

I'm going to see her on Thursday, and hopefully she'll be at home by then. Once she's at home she'll be back online and can read your well wishes.

I wish I had better news. Hope you are all doing well.

Pat

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<sub>SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex</sub>

I hope she feels better and can get settled in at home ASAP

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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, 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

oh man why did she take herself off did they? or did she?my heart aches for her in this situation.. and im pissed that she has no family support..well doesnt make me pissed it makes me angry no one should have to go through this and then feel like theres no family around..is there some way we can collect cards or something for her? i feel so helpless right now..i am on home health not hospice but i was in a nursing home for 3 months one time and i didnt like it..i will send up many prayers for her as i believe in the power of prayer.. hope she gets to go home soon..

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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

Hi Carol--
I'm glad you have a plan and may be getting home soon. You hung in there through alot. I am facing something a little similar, trying to find out if I have follicular lymphoma so I have some idea how to plan my life, whether to try any surgeries or just manage pain. You can email me anytime. I hope you get well soon now that you can have the meds you need. I've been a little down lately and sick and in pain so I haven't been on a whole lot but to check on you and Barb. But I'm around. I miss your joking posts! Iwas trying to think of something witty to say but my wits feel totally fried right now. I can't imagine what you are going through, but I"m praying for you as always.

Get home soon!!! Oh, and I would leave the docs a very unsatisfactory survey for not being able to deal with your illness properly.;) All but the cute one...

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Love, Marji

I"m so sorry to hear about Carol. I don't post a lot anymore, but I do stop by to see how everyone is. Carol my prayers are with you, my friend. I'm sending lots of love and prayers your way.

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dx: UCTD (lupus), sjogrens, reynauds,

I saw Carol today and we made some phone calls, talked to her nurse, and learned that she's going to be moved to a nursing home tomorrow, where she'll get nursing care and physical therapy. The woman we spoke with at the home said that she will NOT be going on hospice. There was a hospice flyer and a nursing home flyer in her hospital room, but she's really just too sick and medicated to ask many questions or to even know what to ask. She is in a lot of pain but seems to be getting good care. I just hate to see how depressed she is. She was barely responsive when she saw me walk in. By the time I left two or three hours later, she was in better spirits, but I honestly don't think she has any visitors except for rare (and disturbing) visits from her brother and SIL. She's in the hospital in Ponca City, OK and will be in the Ponca City Nursing Home sometime tomorrow morning. I'll post my email address later so I can send anyone the address there, should you want to send her a card or a care package. Lord knows she can use some TLC. Her brother lives in a town that's probably an hour away from the town she's staying in.

It turns out that my daughter-in-law's best friend's grandparents (whew) own the nursing home so we're going to see what we can do to get her some special attention, or maybe drum up some visitors for her. It's a two hour drive up there for me so I can't make the trip too often.

Oh, and the nurse told me that she's there for her COPD, which is stable, and because her bladder won't void. A urologist is going to take a look at her but for the time being she's on a catheter.

Pat

I told her you were all praying for her.

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<sub>SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex</sub>

Pat,
Thanks so much for going to visit her and update us on what is going on. I'm so sorry she is depressed. Hopefully they will get her back on her regular medication routine and it will restore her vigor some and help with the depression. The prospect of going to a nursing home right now can't be real thrilling. I hope that somehow they get her COPD back under control and give her the pred she needs for her disease, and that she can get her strength back. And thanksfor the contact info.

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Love, Marji

Carol's in the nursing home. I have her address in case anyone wants to write to her or send her a card. Her sister is on her way up from Florida to have her sign some papers and get her affairs in order.

Pat

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<sub>SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex</sub>

Post Edited (PattyLatty) : 11/12/2009 2:27:42 PM (GMT-7)

It would be better if it wasn't done quite so publicly. Maybe you can leave it here for a day, then tomorrow take it down & have 'em email you for info?

Thanks

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Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

I've edited my post and will include my email address in my profile.

Thanks

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<sub>SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex</sub>

((((Carol)))))),
I had tears in my eyes when I read Pat's post. My heart goes out to you sweetie. Hang in there and keep fighting. There's a lot of people that care about you and love you! You are in my thoughts and prayers.

love you, Babs

This makes me sad! I am so sorry Carol. I sure hope and pray you will recover quickly. I know its hard but please keep your head up! Love you Carol!!!