Posted 10/31/2007 10:10 PM (GMT -6)

Hi Donna, Rose and Ginny, Thank you all for posting back to me. I really appreciate your kindness.

Ginny as far as how do I feel emotionally, I must admit being told 10 or 12 years as long as I don't get sick to often was a little weird. But everyone knows I'm a christian and in some ways it really helps me. I won't discuss it here but the truth is, all any of us has is today.  Only thing that I really don't want to happen is to gasp for my last breath. That's not how I want to go. Oh brother this all just got gloomy lol. Oh well it is halloween. tongue

 

you guys have a great night

love ya


God Bless
Lupus like symptoms, with pbc symptoms,but of course that is subject to change in a moments notice! End Stage COPD w/CHF, Cervical Cancer survivor.  Osteoporosis,osteoarthritis
Prednisone,Plaquanil800mg,vicodin 3x5mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax x3 
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I
 
 
 

Posted 10/31/2007 10:28 PM (GMT -6)
(((((((((Carol)))))))))

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

Posted 10/31/2007 10:39 PM (GMT -6)
Okie,

I just love ya, okie dokie? take care of yourself inside and out.

love and prayers,
emmie
</FONT>

SLE, limited scleroderma, Sjogrens, Hashimoto's Thyroiditis, seizure disorder, Raynauds, Hashimoto's (or Autoimmune) Enchephalopathy

Posted 11/1/2007 1:14 AM (GMT -6)

((((((((((AlwaysRosie)))))))))))))))) thanks rose rigyt back at ya!

Okiedokie, Emmie, I love you too.

I would have been sleeping by now but for some reason I have been itching all over my body tonight. Don't know if it's the A/I or drying skin from the furnace being on. But it's making me nuts!

thanks again ladies

it's November now. I am glad to see oct. gone. It's not one of my favorite months. I'm looking forward to the holidaies and eating lots of ham and turkey.

love ya

 


God Bless
Lupus like symptoms, with pbc symptoms,but of course that is subject to change in a moments notice! End Stage COPD w/CHF, Cervical Cancer survivor.  Osteoporosis,osteoarthritis
Prednisone,Plaquanil800mg,vicodin 3x5mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax x3 
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I
 
 
 

Posted 11/1/2007 1:34 AM (GMT -6)
Hi Carol,
Sounds like you had a traumatic day today!  I know hearing how many years you may have left is not cool at all!  Just because they make a prediction doesn't mean it will happen, we have to believe it's all up to God, and only he decides when we are supposed to go.  My Dad was told he wouldn't live past 7 yrs old, and he made it to 39, even with no meds, heavy smoking and no insurance for the last several years of his life.  You will make it even better, I know, because you sound like a fighter and are doing everything you are supposed to do, then you will be ok.  The "statistics" of a patient to survive a heart transplant are 9.5 yrs and I have heard from several people who are 15 yrs going strong.  So don't let a # define your life.  Trust in God and we will keep you in our prayers!  I had my echo on my heart today, and saw how weak my left ventricle is and it kinda freaked me out too.  It will consume us if we let it though.  God Bless you, I'll keep you in my prayers and hope your pain eases.
Mandy
Posted 11/1/2007 5:32 AM (GMT -6)

Hi Mandy, Thank you for your upbeat post and possitive reinforcement. I can use that. I felt kind of bad for my brother last night. I went to the doctor yesterday with a friend and she was in the room when the doctor talked to me. So we were at church last night and the preacher asked if anyone had prayer requests. She raised her hand and told the preacher and the congregation what the dctor told me. The thing is My brother was the preacher. Hey but lots can happen. I just have to be responsible. Stay away from people who have colds and flu as much as possible. I just have the attitude that the devil don't want me and the Good Lord don't know what to do with me.LOL I'm so sorry about the problems you are having with your heart. I think my heart itself is ok they are just looking to see if I have CHF. but with pulm problems there is always a risk of a rightside heart attack. Even though your father lived much longer than expected I am still so sorry you lost him so early in your life. So what are they going to do about your heart? I will be keeping you in my thoughts and prayers as well.

take care


God Bless
Lupus like symptoms, with pbc symptoms,but of course that is subject to change in a moments notice! End Stage COPD w/CHF, Cervical Cancer survivor.  Osteoporosis,osteoarthritis
Prednisone,Plaquanil800mg,vicodin 3x5mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax x3 
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I
 
 
 

Posted 11/1/2007 10:40 PM (GMT -6)
Well, today I felt pretty good actually, I must be adjusting to the latest increase in meds, but we still have to go up some more, blah, but oh well.  I have an appt with the cardioligist next week, I think he will be referring me to someone who puts in the defibillator thing.  I am tired of being at home now, BORED to pieces!!  I am fortunate to have a low stress, sit down job so I will be able to go back as soon as the meds are adjusted and have that thing put in, I will be very glad, I don't like being so broke and staying home, I like to shop!  I can't do that very well even if I had the money right now, but maybe by Christmas.  I had a weird episode today though, it was the closet to Ohmigosh I'm having a stroke I've ever had, my pulse dropped to half, my head felt like it was gonna explode and my heart was banging hard!  I hadn't eaten all day and it was after I finally ate so I hope that's it, cuz, yikes, not fun at all, my husband almost had a heart attack himself redface (he's prone to panic attacks and svt heart palpitaions) he was freaking out, but after about 10 minutes I was back to normal.  I said I am NEVER eating THAT again! nono   It was a chk taco salad with queso on it, bad me!!  Probably too much salt too!  I am in weight watchers and went to a meeting tonite and it reminded me I better get on the ball and quit messing around I've only lost 4.7lbs since I started a month ago.  My mom is already outdoing me. (but only by 1 lb!) tongue So I plan to be very very good this week!  Well now that I've written a novel, how are you doing today?  Did you have a better day today?  My dad ended up with the Lupus attacking his lungs, BUT he smoked a pack a day and I'm sure you take better care of yourself than that!  I remember the first time I got pneumonia, right before my first heart deal, I thought, why didn't he quit smoking when he had pneumonia first, my mom said he had it several times? He could have lived longer, but I have forgiven him and gone on, I smoked myself until the pneumonia, been smoke free for 4 yrs!  He did have silent heart attacks, so it is good that they are checking you for that, he had like 3 or 4 I think, and had the cardiomyopathy on top of the lung problem, but his heart actually did get better quite a bit with just CoQ10 for years. I hope you get some relief soon and they decide what it is!  Have a great day tommorrow! Still praying for you!
Lupus "tendency" dx 1993 cardiomyopathy/CHF dx 2003: better 2005: rediagnosed with CHF 2007 ,Fibromyalgia dx 2003/ Coreg 40mg, Coumadin, Lisinopril, Prozac, Elavil, Digoxin, CoQ10 300mg, 81 mg aspirin//30 yrs old 
 
-Mandy
Luke 13:30 And behold, there are last which shall be first, and there are first which shall be last.

Posted 11/5/2007 4:22 PM (GMT -6)
Hi, Carol. I'm sorry to hear your dr's still have you on a roller coaster ride! Now it's gone from changing dx's to predicting time of death? Come on! Who DO they think they are? I hope you know better than that! I could write you a book of wrong predictions about myself that were told to my family while I was comatose in '94. I think I do have cognitive function most of the time. I do feed and bathe myself (give me a break); h***, I live alone! And I while it is with a cane, I do walk now. Don't count on the things they tell you. They are just human. They read books and try to guess as best they can. Take it all with a grain of salt. You are strong! And you will be around until you've fulfilled God's purpose for your life. Take care, Carol. Lots of hugs!
Always looking for the silver lining, Sharen

SLE '06, Sjogren's '06, Traumatic Head Injury '94
Prednisone 9mg and tapering, Caltrate 1200mg, Multi-vitamin, Prevacid 30 mg, Actonel 35mg, DocQLace 200mg, Flax Seed (milled) 2Tbsp

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