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MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 3/17/2009 11:34 AM (GMT -7)   
I was just wondering if anyone has spoken with Okie recently.  My heart is so heavy for her.  Judy

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 3/17/2009 5:17 PM (GMT -7)   
Hi Judy:

I spoke with Carol earlier today. She's having a tough time, she has NO desire to be in the rehab hospital. She's very depressed and quite upset. I mentioned to her that she needed to do what the doctors wanted so that she could get her transplant and she said she doesn't want it, she just wants out of the rehab facility.

I know she feels that the stuff they have her doing is stupid and non helpful. I tried really hard to lift her spirits and encourage her but I think I failed miserably. Please keep Carol in your prayers. I call her twice a day once in the morning and once at night. Her breathing sounds a lot better to me and I think she's improving some. I'll keep you posted on her.

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


Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 342
   Posted 3/17/2009 7:11 PM (GMT -7)   
Hi Barb,

Thank you for the update on Carol. I sent her out a couple of cards. I hate to hear that she is feeling down, I guess I can't blame her, but I really want her to focus on her rehab so she can get this transplant. I will keep praying that she will get stronger and be able to get her surgery. Please let her know I was asking for her when you speak with her. Tell her we love her and that we know she's darn stubborn to give up now, and that her Dad would want her to do good in rehab so she could get her lung transplant.

Melissa
Lupus - 1997   Fibro - 2001    Sjorens  -  2007   Raynauds  -  2008
Plaquenil, Imuran, Prednisone, Synthroid, Topomax, Effexor, Norco, Prilsec, Xanex, Elidel, Restasis


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 3/17/2009 8:23 PM (GMT -7)   
Thanks, Barb. I was going to call but don't want to wear her out. I am praying for her and hope that she is doing better.
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


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 3/18/2009 5:21 PM (GMT -7)   
Carol called a little while ago & sounds better. Her lungs sound better and she sounds stronger. She's fighting the physical therapy but they aren't giving her a choice. Her brother needed to take his laptop home because he uses it for business so she won't be online for the next few weeks and asked me to let you know she appreciates the cards and calls.

We'll let you know if there is any news.

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

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


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 3/19/2009 6:32 AM (GMT -7)   
Thankx so much for the update. Barbara, I am so glad she has friends like you and Pat and everyone here at hw. I haven't been able to call and also worry about wearing her out. Please tell her that we are continuously praying. I know that being "in-patient" any where is tough, but it's not forever and she in no state-of-mind to make a decsion about the transplant right now. I'm thankful to hear she is better and praying that she will persevere. It can't be easy. Judy

joinery
Regular Member


Date Joined Oct 2007
Total Posts : 323
   Posted 3/22/2009 7:34 PM (GMT -7)   
Carol, I hope you are doing better. I haven't been on in a while and came across this post I'm so sorry to here about you. I will be praying for you. God Bless.
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.     
 
 
 
 


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 3/24/2009 3:21 PM (GMT -7)   
Hi All:

I've got an update on Carol. She's got celluitis in her left foot. They are making her use the foot but the Dr. said today that she's not suppose use the foot at all. Carol is most frustrated as no one will really tell her whats happening. The social worker has put her off for 11 days now and still hasn't talked with Carol.

On top of that she's not allowed to choose her meals and they are feeding crummy food. What an insult to injury by not allowing her to choose her own food. She now has a lap top available to her and will post in the next few days. Carol really wants to leave the facility and is really struggling to hold things together. She's grieving the death of her Dad and trying to cope with all the stuff at this hospital.

I know it's hard as they are making her do the things she doesn't want to. I know that Carol feels like giving up on life itself. Please pray for Carol and keep her in your prayers and send her positive energy. I talk to her twice a day. If you leave posts I'll read them to her when I talk to her daily.

That's it for now. I'll keep you posted on how she's doing. Keep her in your prayers.

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


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 3/24/2009 3:31 PM (GMT -7)   
Hey Barb, thanks for the update! Please tell Carol that I love her and that she is always in my prayers. I will also be praying that the social worker will get a move on it and get in touch with Carol! Thanks again for keeping us updated!

Amy

 

21 years old...Systemic Lupus 11/07, lupus nephritis 01/09, raynoids 03/08, Carpal Tunnel 03/08

Ultram, Prednisone, Cell-Cept, Lisinopril, Imuran, Ambien, Flexeril, Darvocet, Ferrious Sulfade, Calcium, Vitamin B12, Chantex, Aspirin 81 mg, Vitamin C


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 3/24/2009 5:46 PM (GMT -7)   
Thanx Barb! Not a day goes by that I don't think of her and pray for her. I think Carol should ask to speak to the ombudsmen, all of these type of facilities have them and she can report to the ombusmen the neglect of the social worker and dietary; any and all grievances. I know it feels like you're in jail in these places! Please tell her that I am rooting for her and know she will pull through. If there is no ombudsmen she needs to speak to a nursing supervisor or someone who will advocate for her! Love you so much Carol. Please hang in there! Love, Judy

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 3/25/2009 4:36 PM (GMT -7)   
Hi All:

I briefly spoke to Carol and apparently she has a bug. She sounded down and I think she's upset with me and I'm not sure why.
As most of you know I'm very ill myself with not only my lupus/RA/Fibro but my blood cancer as well. Quite honestly I'm not doing well myself and I saw my doctor today and it looks like I may be admitted to the hospital as well tomorrow. My bone marrow is failing and I'm very very weak. I will try to call Carol on a regular basis, but I have to think of my own health first.

Carol's number is in another post and if someone else would like to call her, please feel free to do so. Again, I'll attempt to leave posts, but it's strongly looking like I need blood and a few days in the hospital. I'm sorry Carol that I can't be there right now. You're in my prayers and you stay strong Carol I'm pulling for you.

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


joinery
Regular Member


Date Joined Oct 2007
Total Posts : 323
   Posted 3/25/2009 5:32 PM (GMT -7)   
Barb.
Thanks again for posting about Carol. I'm sorry to hear about you Barb. you need to take care of yourself. My throghts and prayers goes out to both of you. 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.     
 
 
 
 


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 3/26/2009 7:14 PM (GMT -7)   
Thanks Barb, I'm so sorry this is happening to you again, every time you get well from one thing the other seems to crop up. I am praying you get that sct soon. I hope they can do it soon. Please let us know what is happening. I will find Carol's number and give her a call tomorrow.

I gotta crash. I love you Barb and Carol and always prayers to you and good thoughts and everything. I hate being in those places because they often act at cross purposes. I am in the same boat with the DVT and physicaltherapy, and cellulitis is such a pain pain. Love to you both.
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


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 3/26/2009 7:22 PM (GMT -7)   
(((((((((((Barb))))))))))))))) I know you're dealing with alot. Please keep us posted on your condition! Take care girl! Love and prayers, Judy

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 3/30/2009 10:37 AM (GMT -7)   
I spoke with Carol this morning and was happy to hear her sound better than she has in a long time. They have taken her off steroids and may discharge her as early as this Friday. She's still using a walker but can walk without it so she'll be ok to take care of herself when she gets home. Her next appointment in Oklahoma City is on the 9th.

I updated her a little on the forum and Judy, she was especially happy to hear your news.

Barb, on the other hand, seems to be doing worse, and her white count is so low that the doctor is afraid to put her in the hospital where she'll be exposed to so much illness.

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

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


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 3/30/2009 11:19 AM (GMT -7)   
Patty,
Thanx soooo much for the update! I am so relieved to here Carol is making progress. I know she will be so glad to get out of there! If you speak to Barb please tell her I am praying for her. She has dealing with so much herself! God Bless them both! Judy

joinery
Regular Member


Date Joined Oct 2007
Total Posts : 323
   Posted 3/30/2009 12:06 PM (GMT -7)   
Carol, I know you will be happy to be out of that hosiptal so glad to hear the news.

Barb my thoughts and payers go out to you!!!!
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.     
 
 
 
 


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 3/30/2009 4:16 PM (GMT -7)   
WooHoo!!! That is great news about Carol! Thank goodness :-)! I am so glad to hear she is doing better. Barb, you will be in my prayers that you can get back to yourself asap! Both of you will still be getting lots and lots of prayers. Thank you Patty for the update!
Love ya all

Amy

 

21 years old...Systemic Lupus 11/07, lupus nephritis 01/09, raynoids 03/08, Carpal Tunnel 03/08

Ultram, Prednisone, Cell-Cept, Lisinopril, Imuran, Ambien, Flexeril, Darvocet, Ferrious Sulfade, Calcium, Vitamin B12, Chantex, Aspirin 81 mg, Vitamin C


Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1551
   Posted 4/2/2009 4:54 AM (GMT -7)   
Hey Carol. I sure hope you get discharged tomorrow. I'm sure it would lift your spirits just to be able to eat some things of ur choosing. I know first hand that walkers suck, but I've become pretty used to my rolling walker. Luckily I don't use it in the house. I gotta go to a gyn appt now (always a highlight isn't it?) I love you Sweetie and I keep you in my prayers. Love, Donna

Systemic Lupus ('05), depression, diabetes, fibro, gerd, hypertension, IBS, sleep apnea  Rx: Cellcept, plaquenil, prednisone, celebrex, lisinopril, actos, lipitor, nexeum, prozac, seroquel, wellbutrin, actonel, tylenol arthritis, neurontin, phenegren, flexeril, vit C, multi vit, flaxseed oil.  Acupuncture  "Welcome to lupus, where the strange is ordinary and nothing is normal." Donna 
 

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