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Posted 11/7/2007 11:52 AM (GMT 0)
I've had it. No one knows what is going on with me. I still have not heard back from the test on friday or the test on monday and now I have this pulm. doctor who says I don't (think) you have lupus in your lungs. What?????? he did no blood gases, no xrays, nothin! He gave me a free sample of xopenex inhalers and sent me home. That was it. I'm taking some time off to bat my head against the wall. I'm tired, frustrated, and practically broke from burning so much gas running from one doctor to another doctor. Oh he did say that the reason my back pain was so bad is because my lungs are to big for my chest and it's causing my ribs to push backwards. eyes but some day I might need a transplant. He's full of it. If I have A/I I'm not a candidate for transplant. I said from what I understand most people wait forever for a transplant an not get one. He said yeah they usually die first. confused . So why bother telling me about a tranplant maybe some day. To give me false hope? I don't want false hope. Who asked for it? I'd rather have a doctor be straight with me instead of one that will pat me on the head tell me to by an exercise bike or treadmill. LMBO !!!! By the time I got either one of those things in the house I would be to out of breath to use it!  Don't get me wrong. At this point my quality of life is ok most days. I'm beginning to think though that there will be a lot long time for a A/I Dx than I thought. I have the very high titers and I have lots of symptoms that are responding well to the pred. and the plaq. I remember when i first came here I was always so swollen and fatigued I could barely drag myself out of bed. Than after 6 months on the plaq. I started to notice a difference. I also read this morning that it's not uncommon for Lupus patience to have extr amounts of fluid around their heart! Dah every time I get (flare) I have it show up.  Anyway I'm just gonna mosey on into the sunset. Who knows maybe on my journey I'll find a little intelligent life out there. I know I'm just being a total ranting soapbox queen right now. I swear if it wasn't for my PCP I'd give up on all doctors. I just need to stop thinking about this stuff for a few days and maybe go buy myself somthing LOL. (if I had any money)

Ok I'll shut up now. I'm gonna put a sign on my door saying enter at your own risk!

love ya guys

carol

Posted 11/7/2007 3:28 PM (GMT 0)
((((( Carol )))))) I've ridden off into that same sunset a number of times. I am so sorry you are still going through all of this, this just confirms that there are so many doctors out there that have NO business practicing medicine nono , it just blows my mind. It kind of reminds me of the 2nd rheumy I went to see, he was more interested in the fact that I was (at that time) working for a collection agency and my enlarged thyroid (which I see a specialist for). He didn't pay a bit of attention to my symptoms or complaints. He then ordered a couple of test and when "some" of them were positive and some were negative he tried to tell me the lab made a mistake because you couldn't have one positive (SSA) and the other be neg (ANA of 80), he didn't take into consideration my ANA had been 640. When I asked him about the way I was feeling he said "well maybe by the time you are 90 your blood work will catch up with your symptoms" mad WHAT?!?!?!?!?

Hang in there sweetie, there is a doctor out there SOMEWHERE that will help you! Go shopping and buy yourself something nice, it always helps me. I love purses.... so when I'm down I go and get a new one.... that's why I have about 50 of them tongue

Seriously, take a deep breath... clear your mind.... and take one day at a time. I am here if you need me! Hugs and love to you!!!!! You are in my prayers
Posted 11/7/2007 3:30 PM (GMT 0)
((((((((((((Carol)))))))))))) Hang in there sis!!! Some hot tea for you now!! Blessings!
Posted 11/7/2007 6:20 PM (GMT 0)
Hi carol--
It took me 13 years and a few trips to inpatient and still didn't get a dx for a long time. I finally said, I will not live like this anymore, I told the doc that I can't live like this and they had better do something and quick like to get me feeling better and for once actually FIX something, instead of bandaids, or at least diagnose. At least you got something. I've gotten shoved out of the office with absolutely nothing. This happened three times with my neck swollen as thick as my head, not being able to talk, and lymphoma risk and everything. It just bit es. Anyway, I understand wanting to forget and wishing you could take matters into your own hands. I hope you switch docs and find another, maybe a female, of course I've had lousy females too.

If you are talking liver transplants, they give them to people with hep C and with fatty liver, I haven't researched the other stuff. But with hepc, they know its going to come right back, especially on anti-rejection drugs, but they do it anyway. Same with fatty liver. Liver disease takes a long miserable time to get to that point. Mostly you are fatigued all the time and other stuff breaks and your ANA goes up and yo get other autoimmune problems and it takes forever. There's plenty of these old moonshiners with livers like shoe leather that are like 90 and still kicking it. Me, I drink, I get sick. Oh well.

Don't they just get it that if they give us the medicine we need to at least feel better we'd all just shut up and go away?!!! Think of the healthcare dollars saved.
Posted 11/8/2007 1:05 AM (GMT 0)
Oh Carol, I'm sorry you're dealing with all of this and not getting the answers you need.  That doctor sounds like a total numbskull.  What a piece of work he is.  Your lungs are too big?  COME ON.  Did you just want to say, "Come here, a bit closer so I can SLAP YOU!"  I think you're wise to take some time away from all this and give yourself a break.  It sounds like you need it..... ((hugs)).

 

Good thing you have your pcp.  I really hope you get the right doctors very soon.

 

I'm thinking about you Carol!

 

Ginny

Posted 11/8/2007 4:44 AM (GMT 0)
Oh Carol, add another doc to the "Bad Doctor" list. Why are the jerks everywhere and the good ones so hard to find? It's so very frustrating to spend all the time, energy, and money to get to these appointments only to have an experience like you had today. I don't know how this guy could tell you all of that stuff without doing some tests. Let's put fluid around his heart, yank out one of his lungs and half of the other one and tell him to go run on a treadmill. Can you tell I'm just a little ticked about what happened to you? Thank goodness for your PCP who seems to be the only one with their head screwed on straight. I wish you would hear back about your other tests so you'll have a more clear picture of what is going on. Everything you are going through with your heart, lungs and liver (and maybe kidneys) is very scary and it's so important to have good specialists, but it takes so much energy to doctor shop. Hang in there - I'll jump right on the soap box with you. Love, hippi
Posted 11/9/2007 3:03 AM (GMT 0)
((((Carol)))),

   Bless your heart! I'm sorry your going through all this sweetie. Like the others said, its good you do have a good PCP. It sounds like he is trying to get the right answers for you.

  Just take a deep breath, relax and go shopping!!! That always helps me feel better till I get the bill...lol. Hang in there and update us when you can. You are always in my thoughts and prayers.

                                                   Love, Babs

Posted 11/12/2007 2:28 AM (GMT 0)
((( Carol ))). I'm SO sorry for your frustrating appt. I know you have really been looking forward to that for some answers! I think we can all feel where you're at right now! All I know to say is just keep searching. There HAS to be a better pulmonologist than that around who can help you. I really don't see how he can tell you anything without any testing. Just hang in there! I know the shopping always helps me too. Good luck and keep us updated, okay?
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