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Doctors appt: this morning

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Posted 10/31/2007 1:11 PM (GMT 0)
Well I have a doctor's appt: in 2 hours. This is where she tells me why she thinks my rheumy is wrong and she is right with Lupus vs PBC. eyes . At the moment I am kind of grouchy. I've been without pain meds and predisone for 3 days now. They finally called in my pain meds last night which did me no good because it would have been to late to get them before I got to town. On top of that they forgot to order my predisone. So now I'm gonna drag myself into a shower and hope it helps. I'll let ya know how it goes.

OH YEAH

HAPPY HALLOWEEN devil devil devil devil devil devil devil devil devil devil devil devil devil

Posted 10/31/2007 2:04 PM (GMT 0)
Oh no Carol, you must feel miserable. You must be feeling like a real live monster this Halloween morning. I don't know how you got along without the pain meds and especially the prednisone. I hope your appointment goes well. I still wonder if you maybe have both lupus and PBC, but hey, I'm no doctor, but it seems like a reasonable possibility. I'll be really interested to see what your doc has to say. I hope it doesn't wear you out too much. When you get home, take some prednisone and some pain pills and curl up with a good movie or better yet, take a nice long nap. love ya, hippi
Posted 10/31/2007 3:20 PM (GMT 0)
Prayers for you sis . . .keep us posted! Blessings!
Posted 10/31/2007 8:21 PM (GMT 0)
Well ok I'm home. My doctor said she read what the rheumy said and said "Who is this guy"? She is adiment that I have Lupus. She said he requested her to do certain blood tests on me so she did today. She said there is nothing in any of my old tests that point to PBC. But she is doing the tests and sending him a letter and sending me back to see if he changes his mind. I feel like a ping pong ball!
She drew blood, I've been having some chest pains lately so she did an ekg and said it looked good. Tomorrow I go in for a ultrasound of my heart to see what's going on there. She insists I have lupus lung. I have an appt with the pulm on the 6th. So I have a years worth of xrays to take with me. She gave me a new perscription for pred. and increased my pain meds to 120 vicodin a month. She did another lung function test on me too and said I'm holding my own at fev14. which is not real good. I asked her how long I have. She said 10 to 12 years. So unless I get pnemonia again I still have some time. It's actually getting sick that is taking the years off my life. We are kicking around the idea of having me on antibiotics permanently but I am afraid if we do that and I get bad anyway the antibiotics won't help. Well that's it for now. I'm a little sad and very tired. I do look forward to hearing what the pulmonologist has to say If it's lupus lung maybe there is somthing that can be done for it. Things change all the time.
thoughts and prayers
carol
Posted 10/31/2007 11:01 PM (GMT 0)
Hi Carol.  I'm sorry you're sad on Halloween sad    You certainly are being jerked around.  I'm glad your doc is very caring.  You need it with all you go through.  Try to take it easy tonight and hopefully the meds will kick in.  I'm sending you lots and lots of (((HUGS))).  Love Ya Sis.  Butterflake
Posted 11/1/2007 12:53 AM (GMT 0)
I really hope that there is something to be done for your lungs and that they get to the bottom of whatever is going on.
Posted 11/1/2007 2:12 AM (GMT 0)
Hi Carol,

I can understand how you are feeling like a pingpong ball. I'm glad your doctor is such a bull dog about getting to the bottom of all this. That must be reasurring?

 

I hope you don't have to go on permanent antibiotics.  you're in my prayers Carol.  How are you doing emotionally? We all know what this back and forth nonsense can feel like.  We're here for you and care about you very much.

 

Lots of love

Ginny

Posted 11/1/2007 3:10 AM (GMT 0)

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

Posted 11/1/2007 3:28 AM (GMT 0)
(((((((((Carol)))))))))
Posted 11/1/2007 3:39 AM (GMT 0)
Okie,

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

love and prayers,
emmie
Posted 11/1/2007 6:14 AM (GMT 0)

((((((((((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

Posted 11/1/2007 6:34 AM (GMT 0)
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 10:32 AM (GMT 0)

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

Posted 11/2/2007 3:40 AM (GMT 0)
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!
Posted 11/5/2007 9:22 PM (GMT 0)
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!
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