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Veteran Member

Date Joined Dec 2006
Total Posts : 2818
   Posted 3/14/2009 6:28 PM (GMT -6)   
just a quick  thank you. I have a lap top in my room but it doesn't work well and I will probably give up on this by the time I get done. So I will giv the very breif summmary hopfully more later.
First thanks  you all for your calls thoughts and prayers. Yes my dad went to be wwith the angels. Ironically his lungs were as bad as mine and none noticed. he was knocked out for 2 days and only lived 3 mins after they took him off of life support. His funeral is in phoenix /scottcsdale ariz. where he will be buried with my 29 year old brother. Mom wants everyone to wait and plan a memorial for later when we can all gather from around that country. Especially since I was put in this hospital and my brother had major back surgery the day he passed away. Neither of us could travel. I wish I could crawl there to be with him but I know he would disapprove.
I NEED TO MOVE ON WITH THISPOST IF YOU DON'T MIND.sorry about the caps. sI am in what they call a long term acute care hospital. it's pretty much like any other hospital. they do try to get you to exercise. Iam up to 1/2lb of arm lifts and leg lifts. they tried to put apick line in but no luckjust a huge nasty bruise. I have a lot of those. I really don't think I'm gonna beat it this time guys. maybe i'm just tired. if anyone wants to reach me feel free either to my home address it might take a while forme to get back to you or possible someone else has it. I hesitate putting that  burdern on anyone elses shoulders. They are talking about amonth so by then I'll go nuts. again I just wanted to thank everyone for their 2 a.m. offered for  phone calls. plus those who have called I could barely talk to because I had people waiting in line to try to collect sommething from my body. You are all sts. to me and deserve a  special place in heaven. I domn't want to name off people because I would forget. I'''d never want to do that. We
 are only strong when we are one..
I know I missed this up but I am functioning between a 1 and a 3 with a pain lever of 8.
nurse just came in dr. wants to have me pee and tell them right away so they can mesasure amount I went in that plastic cup pplus they will ultra sound my bladder. I've had that donne 3 times todAAY. yes along with everything else my bladder has quit functioning. my fet look like snake skin. there is no flesh to gra. just taught shiny stuff. well respitory just came in .
I guesss it's a breathing treatment. I'll write more when I can hold a conversation.
God bless you all. I truly meann that.
love you
Possible scleroderma.  stage 4 COPD, sleep apnea, Osteoporosis,osteoarthritis
Prednisone,plaquanil400mg,azythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, provigil 200mg spirivia,aciphex,lasix ,pot.chlor.,B12 ,iNDEROL
Bear ye one another's burdens
Galatians 6:2 KJV


Veteran Member

Date Joined Jul 2007
Total Posts : 1048
   Posted 3/14/2009 8:14 PM (GMT -6)   
((((((((((Carol)))))))))))))) So good to hear from you. I can't tell you how sorry I am about your dad and your situation. God knows I wish I could be near so I could help in whatever way! I am praying for you Carol, and I am asking my ladies' prayer group to pray also. I know you are tired and weary in body and soul right now but Jesus is the rest werewith the weary can find rest. I know He will comfort your broken heart and spirit. If I could make it all go away God knows i would. I love you, Judy

Veteran Member

Date Joined Feb 2003
Total Posts : 5514
   Posted 3/15/2009 12:29 AM (GMT -6)   
I'm so deeply sorry about your dad.  Judy's reply to your post is so appropriate and perfectly said.  We all have so much love for you Carol.  We want this transplant to move ahead and for you to get back to living. You are amazingly positive despite everything you're going through. You are an inspiration. 
My prayers will continue for you as well.  Thank you for letting us know how you're doing.
Much love,
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

35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
Co-Moderator for the Lupus and Fibromyalgia forums

Melissa D.
Regular Member

Date Joined Aug 2008
Total Posts : 451
   Posted 3/15/2009 10:33 AM (GMT -6)   

Hi Carol,

I second what Judy and Ginny said, you are the strongest and most positive woman I know! We all want this transplant for you so badly, because you deserve it, and so you get back to chasing good looking men. I don't suppose there are too many of them floating around that hospital, huh?

Seriously though, I too am praying for you to get strong and get in there to have this lung transplant that you so deserve! And when you do we all need to meet up and have a big celebration in your honor! Hang in there lady, you're the best!

Hugs from Texas,


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

Veteran Member

Date Joined Jun 2006
Total Posts : 1650
   Posted 3/15/2009 11:40 AM (GMT -6)   
(((Carol))) I'm so sorry to hear of your Dads passing. I'm glad your Mom is waiting to have a memorial service so both you and your brother can attend. It's great to read a post from you, but I hate that you are going to be an inpatient for another month. You must be going stir crazy. And now ur having bladder issues too. How unfair. As always ur in my thoughts and 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 

Veteran Member

Date Joined Jun 2008
Total Posts : 675
   Posted 3/15/2009 1:55 PM (GMT -6)   

It's good to hear from you!  As always, Carol, your spirit, strength, humor and compassion for others comes through - even under these most difficult and despicable circumstances.  I would probably be flinging bedpans.  You are an inspiring example of GRACE UNDER FIRE.  I really mean that.  Prayers and ((((hugs))) and all manner of good positive energy to you.  Hold on.


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998;  UCTD (dx limbo) 2007
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn

Veteran Member

Date Joined Jan 2007
Total Posts : 610
   Posted 3/15/2009 3:29 PM (GMT -6)   
It's good to hear from you! Carol ((((hugs)))))) prayers will be with you. It will only get better. Hang in there.
DX SLE 1988; APS (Antiphospholipid Syndrome) Pred 10mg, Verapmil 40 mg bd (for migraine headaches), Cellcept 1000 mg;Omerprazole 40 mg; Warfarin; Calcium + Vitamin D 1200mg, Folic Acid 5 mg; Iron; Simvastin; Oxycontine 10mg; pregablin 150mg

Veteran Member

Date Joined Mar 2006
Total Posts : 2608
   Posted 3/16/2009 9:15 AM (GMT -6)   
Hi Carol,

I posted something here yesterday but I guess I forgot to hit the post button. I hope you can get your laptop to work a little better because it will be so much company for you. I hope you're adjusting to the new hospital and the nurses there. Is the physical therapy helping you at all? I'm sure it's a pain having to get up and do all that work, so I hope you'll soon feel the results.

I'm glad you felt strong enough to post something here because even though we've been giving updates on your situation, everyone wanted to hear from you.

Take care of yourself,

SLE, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis, gluten intolerance.

prednisone, plaquenil, arava, neurontin, synthroid, triamterene, actonel, tri-est, imitrex (for rare migraines), cymbalta, tricor, acifex, multivitamin, calcium w vit D, fish oil, aspirin

Regular Member

Date Joined Feb 2009
Total Posts : 20
   Posted 3/16/2009 12:03 PM (GMT -6)   

Hi Carol, we don't know each other but you are in my thoughts and prayers. I've been in and out of the hospital since last Sept. with lupus pneumonitis and I now have my first nephrology appt tomorrow as my urine is showing 2+protein. I have interstitial cystitis, so I'm used to having things in my urine, but never protein.  I get so tired of being sick- I just got a new rheumy who had me get all the lupus labs known to man but now she is out til April due to surgery so I sit here waiting. Wondering what's up next.

I'm so sorry to hear about your father's passing. I've lost both of my parents and miss them still, especially my mom. I think it's good that your mom wants to wait for a memorial service until you and your brother can make it there. Hang in there. God gives us what we can handle and you need to put yourself into His arms. I try to remember this when I have so much pain that I can't even get up to see my 10 year old son off to school in the morning (like this morning).

Know that there are a lot of people out there praying for you and I especially pray for you to be free of pain and find comfort. ((((Hugs)))) Sandy

Diagnosed with SLE 1994,Fibromyalgia 1994,Interstitial Cystitis 2000,lupus pneumonitis 2002,peripheral neuropathy 2002,cerebral anoxia 2007,
I can do all things through Christ who strenghthens me. (Phil 3:13)
Go Gators!

Barbara Lee
Veteran Member

Date Joined Sep 2003
Total Posts : 2889
   Posted 3/17/2009 8:10 PM (GMT -6)   
Hi Carol:

I'm so sorry about your dad's passing. It's hard to loose a parent my mom passed away in 1998 and it's still hard for me. You're in my prayers Carol. I hope that you're feeling better and I hope that you get to go home soon. I know how much you hate being in the hospital, it's no fun at all.

I know you're feeling really low and want to leave, but hang in there Carol, this will help you in the long run and make you stronger. You'll be ready for you transplant and be strong for it. Hang in there sweetie and I'll keep calling you.

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

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