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okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 10/6/2009 9:51 AM (GMT -7)   
I hope this fines you well. Please forgive me for not coming here more often. It's just that I am so sick that by the time I get done posting a message I am usually to sick to get back to the computer for days. and that's not fair to you with all the support you have given me. The reason that this group works so well is that there is so much love and support give and take. I just don't have anything to give.
The weather has barly turned and my lungs have me in bed 85% of the time. I pray alot that I just go home. I saw house last night and they said they had a person in the morgue with scleraderma. I thought that lucky person!
Good news is I am getting my own place that goes by income. they are nice apartments and my dog is signing a paper saying my dog is my support so i can keep him. They are all down stairs apartments close to the door to get the grocceries in. and they pay for cable so every little bit helps.
the people that live there are older or disabled so it's not a lot of loud noise.
I spoke to Barb yesterday. She just found out her father has cancer. She lost her mom years ago. Please keep her in your prayers.
I understand them taking me off the steroids for the transplant but if they don't know when I wish they would give them back. I am certain that has a lot to do with my going down hill. I've been off them for months and  havn't had many good days since then. My pulmonologist said that I didn't need steroids that it was a figment of my imagination. I wish he had one of my days.
well I need to go I just wanted to send a hello and please know I am never farther away then a call or email.
love
carol
Bunch of medicine and I'm sick a lot!

 
 


crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 10/6/2009 10:28 AM (GMT -7)   
Hi Carol, You don't know me, but I feel I know you. I joined the forum in July.
Before I joined I was reading this forum for well over a year. I just wanted to let you
know how much of an inspiration you have been to me. I have admired your courage.
You truly have been through alot. I have often thought about you, wondering how you
were doing. Sending prayers and gentle hugs your way.

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 10/6/2009 6:05 PM (GMT -7)   
Hey Carol!!! I have been thinking about you alot, I am so glad you stopped in and gave us an update! I am sorry to hear how you are feeling! I understand feeling like you don't have anything to offer us but you do more than you realize! You are an inspiration to me and just hearing you crack a joke here and there brings a smile to my face! And even tho you feel this way, we can be there for you. Hang in there my friend and know I am here for you and you are in my prayers! Love ya girl
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)


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 10/6/2009 7:38 PM (GMT -7)   

Hi Stacie and Robin, you guys are so sweet. Robin thank you so much I hope in the future to get to know you, you sound like a real sweetie!

Stacie my friend,Gotta love ya. I think of you often as well. I did come on here tonight and reread what I wrote. I have to clear one thing up. My dog is NOT signing a paper to say he is my companion. It's my doctor that is signing the paper. All though if Taco could write I think he would do it. It's the fax machine he has trouble with.

I found out this after noon the lady that comes in for 3 hours a day 5 days a week has H1N1!!!!!!! along with her 4 children. Her name is Kevina please keeo her and the little ones in your prayers. She has 2 of the 4 in diapers and 1 just got potty trained. They sent someone in her place but they are making her get a shot before she can start and they are watching me closely to make sure I don't get sick. I guess it is 5 to 7 days after exposure. and I was with her last week. If it get my lungs that will not be good.

ok anyway thanks again ladies

love ya and God bless

carol


Bunch of medicine and I'm sick a lot!

 
 


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 10/7/2009 3:08 PM (GMT -7)   
Carol!!! Its great to hear from you! i have missed you greatly and I do have to say I busted out laughing when I read that your dog was signing...my first thought was man, I need to train my cat to support me! That would be awsome. I also love the name Taco! Very cool :-) . I hope the weather gets better so you don't have to be in the bed so much! I know how much of a bummer being shut in is. I love ya girl and pray for you everyday!

Amy

 

Systemic Lupus , lupus nephritis , and a lot of other stuff associated with Lupus!

Cytoxan, Prednisone, Lupron, Zofran, Mesna, Lisinopril, hydrochlorothiazide, Midrin, Ambien, Flexeril, Ultram, Darvocet, Ferrious Sulfade, Calcium, Vitamin B12, Aspirin 81 mg, Vitamin C

The Old Normal is no more so I and we have to find a New Normal...

 


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 10/7/2009 5:26 PM (GMT -7)   
See Carol, you always put a smile on our faces! I knew someone, not the dog was signing the paper ;) but I did get a chuckle!!!! I pray you don't get h1n1, that would NOT be good for you. You continue to be in my prayers! Love ya!
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 10/7/2009 8:43 PM (GMT -7)   
Carol,

I'm so excited for you that you're getting your own place. That's just what you need to get back into a positive healthy environment. When do you move? And I'm glad your puppy is going with you. But I don't like hearing that you're feeling so bad. Were you put on steroids by a pulmonologist or by rheumatologist? If by a rheumy, that's who should tell you to stay on or get off of them. Are you seeing a rheumy for your scleroderma? I hate to admit it but I don't know what meds are used to treat it.

Good luck with your move.

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


Raven1954
Regular Member


Date Joined Sep 2009
Total Posts : 31
   Posted 10/8/2009 4:46 AM (GMT -7)   
Hi Carol,I'm Diane(Raven1954) new to the forum.So glad I read your post,I just had i.v. chemo yesterday,and the dog signing the papers gave me the first good laugh I've had since.I know you are feeling awfull,and prayers are with you,but still you brought joy to many in your post,thank you. hoping to get to know you better.God Bless, Namaste Raven1954
sle since 1986, cerebritis,pre diabetic, peripheral neuropathy,mvp cataracts,degenerative disc dx. liver failure due to tylenol for to long,Meds: prednisone,inderal. synthroid,tegretol,nasonex,phenergan,dalmane,valium for fibromyl. dilaudid q8 for pain,cytoxin iv every 6 months,asa daily,albuteral inhaler,frequent antibiotics. Learning to live a differant life now, cpap for sleep apnea.Life is not a journey to the grave with the intention of arriving safely,in a pretty and well preserved body,but rather to skid in broadside,thoroughly used up,totally worn out and loudly proclaiming-WOW,what a ride!!!


Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1547
   Posted 10/8/2009 5:32 AM (GMT -7)   
Hi Carol. Like everyone else, I laughed at your dog signing the papers. Do you think Oklahoma will pass canine marriages? Just something to consider. On a serious note, I am so very sorry you're bed ridden. I hope you're able to get around your apartment. It should boost your spirits to have your own place, although you may want to stay away from cooking tacos. Anyway, it's really great to hear from you. I'm sending you comfort, a cup of hot tea, all the positive energy I can muster, and prayers. I love you Sweetie. Donna 
Systemic Lupus ('05), depression, fibro, sjogrens, cns issues, diabetes, gerd, hypertension, colitis, stage 1 kidney disease  Rx: Cellcept, plaquenil, prednisone, celebrex, lisionpril, actos, lipitor, nexeum, prozac, wellbutrin, ambien, cholestryramine, lomotil PRN: xanax, neurontin, tylenol arthritis, flexeril, nasonex, phenegren, vitamins, Acupuncture.  "Welcome to lupus, where the strange is ordinary and nothing is normal." Donna 
 


FW
Regular Member


Date Joined May 2007
Total Posts : 477
   Posted 10/8/2009 6:27 AM (GMT -7)   
Hi Carol,

Glad to hear from you, tho sorry things are so rough. Good thoughts and hugs coming your way!
Take care, Fran

Dx: Lupus, sjogren's, celiac, severe allergies.
Daily Meds: Plaquenil, Zyrtec. Aciphex, Nasacort, Prozac, Ambien CR, CellCept
Daily Supplements: Calcium, B-100 Complex, Daily Vitamins.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Darvocet, Prednisone.

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