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ThomCat Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 10:19 AM
Original message
For the past year they've had my diagnosis wrong
and had me on the wrong meds. My Rheumatologist and Neurologist had a conference call and just figured this out. x(

So now I start with the tests all over again to try to find out my diagnosis SHOULD be. It was nice at least thinking they knew what was going on. :(

So now I'm phasing out the old meds, because I'm not allowed to just stop taking them. My body doesn't know what the hell is going on anymore. My doctors want me to start taking Lyrica to see if I have Fibromyalgia. But Lyrica conflicts with several of my meds. So I have to stop taking one of my migraine meds and the antihistimine that allows me to tolerate Morphine (I'm alergic to narcotics).

WTF am I going to do if I can't take my antihistimine? I can't stop taking the morphine.

So I'm pretty fucked up right now between detox, and side effects, and waking up with a migraine just to tell me how bad it's all going to get. Very soon I'm going to be itching like hell and clawing at my skin too. Can anyone just make it all go away? Please?
:cry:

Anyway, that's why I'm still being quiet. life reallys sucks right now and I feel like hell. I really, truly hope you're all having a much better time than I am.
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Radio_Lady Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 10:34 AM
Response to Original message
1. Oh, ThomCat... so sorry to hear this.
It's never good to just go off a medication -- tapering down is good.

You have a plethora of symptoms there and I have no answer.

I know how hard it can be to work with doctors -- after all, they are humans.

Try to get some support from family and/or friends -- I know we can't discuss medical issues, but there are good support links for practically any disease you have -- or think you have.

Peace, love and happiness,

Radio Lady in Oregon

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ThomCat Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 10:42 AM
Response to Reply #1
4. My primary concern
is going to be, how the hell am I going to function while I'm on this rollercoaster? I need to keep working. There isn't much that friends and family can do to help with that.

If the past few days are any indication, I am going to be dragging myself into the office in really horrible shape. :(

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Radio_Lady Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 10:53 AM
Response to Reply #4
14. Very tough story, kiddo. I've been there and back... wish there was something else I could do.
Edited on Sun Jun-01-08 11:06 AM by Radio_Lady
You should tell the doctors that you are not functioning well and you need help. Is it headaches and pains in your body? Sleepy?

You need better guidance from a nurse practitioner or regular nurse. Call their them the earliest you can on Monday.

Tell me you are NOT driving to work, right?

Someone should know about this.

PLH,

Radio Lady
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ThomCat Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 11:02 AM
Response to Reply #14
17. Pain, almost daily migraines,
going back and forth between being exhausted all the time because of the meds and not being able to sleep at all because of the pain.

No, I definitely don't drive. I live in NYC so I use the subway. And thanks to the generousity of DUers last January, I have an electric wheelchair so I'm not struggling on crutches and taking cabs every day.

I would never, ever put other people at risk by driving. I can't even imagine trying. :(

I will be seeing my Pain Management doctor this week, and on Monday morning I'll try to move up that appointment to sometime Monday afternoon. His office is two blocks from my office.
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Radio_Lady Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 11:09 AM
Response to Reply #17
21. Good news that you will work with your doctors.
Please feel better. Going to take a nap now, since I've been up since 2 AM.

Peace, love and happiness,

Radio Lady
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Gormy Cuss Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 10:35 AM
Response to Original message
2. Here, let me join you in the headbanging.
I'm sorry Thomcat.

:hug:
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ThomCat Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 10:44 AM
Response to Reply #2
6. Hi GC!
:hug:

There is certainly a lot of that going on. :(
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huskerlaw Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 10:39 AM
Response to Original message
3. Oh, Thom!
That's horrible! I'm so sorry that you're having to deal with all this shit. :(

I sincerely hope that they figure out what's really going on and get you on the right meds...and SOON.

:hug:
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ThomCat Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 10:47 AM
Response to Reply #3
9. I'm beginning to wonder if that's possible.
:(

I supposedly have some of the best doctors in NYC. But the whole process seems so random.

I don't normally believe in luck. I've certainly never had any. But I could definitely use some now.
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huskerlaw Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 10:51 AM
Response to Reply #9
12. I'm wishing you the best of luck then!
I don't personally know anyone who deserves a bit of good luck more than you do.

:hug:
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lightningandsnow Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 10:43 AM
Response to Original message
5. Oh man, that sucks.
:hug:

Hope everything gets ironed out soon.
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ThomCat Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 10:50 AM
Response to Reply #5
11. All I can do is be patient,
and go along for the ride as we try one thing after another. :)

It would be nice if the ride was a bit more fun though. The tickets are kind of expensive. :P
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Lyric Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 10:44 AM
Response to Original message
7. I'm so sorry sweetness
I wish there was something I could do. You're the last person in the world who deserves to be going through this hell.

:hug:
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ThomCat Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 10:56 AM
Response to Reply #7
15. We all need to be come comfortably wealthy.
I'd use my share of that wealth to fund a few more doctor's extravagant lifestyles. :P

It's scary talking to doctors and realizing how little they understand about pain, or what to do about it.

:hug:
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Tuesday Afternoon Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 10:44 AM
Response to Original message
8. sheesh, ThomCat, this really sucks. I am so sorry you are having
to go through this. It is a wonder they have not hospitalized you. :hug:
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ThomCat Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 11:06 AM
Response to Reply #8
19. I've talked to one of my doctors about that.
There's nothing they can do in the hospital than I can't do at home. And in the hospital I'd be so bored to tears I'd have nothing to distract me from the pain.

At least at home I have the cats, DU, friends on the phone, etc. :)

The day is getting closer though. I think a short stay might be part of my going out on disability when that day comes.
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Tuesday Afternoon Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 11:11 AM
Response to Reply #19
23. well, I guess you can monitor yourself and your levels as well as
anyone :shrug:

I hope nothing gets to out of kilter. :hug:
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BlueIris Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 10:48 AM
Response to Original message
10. Poor ThomCat.
((((( Thom )))))
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ThomCat Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 11:11 AM
Response to Reply #10
22. Hi BlueIris.
:hug:

I'm very fortunate that I'm not poor. My career pays just enough to afford my healthcare. I often worry about people who can't manage to put half of every paycheck just into healthcare. :(

That wasn't what you were saying, but I'm going off on tangents. :P
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Lavender Brown Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 10:51 AM
Response to Original message
13. That's just not right
I'm so sorry you've been suffering so much; I can't believe they put you on the wrong medications.

I don't know what to say. :hug: :hug:
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ThomCat Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 11:17 AM
Response to Reply #13
26. So long as they fight the right ones eventually
it's all okay. :)

But that assumes there are right ones out there. And that's seeming less likely with every new round of meds they try me on.
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BarenakedLady Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 10:58 AM
Response to Original message
16. I'm sorry Thom.
I hope they figure it out soon.

:hug:
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ThomCat Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 11:20 AM
Response to Reply #16
27. I hope so too.
I'm getting tired of getting the side effects without getting the intended benefits. :(

:hug:
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malta blue Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 11:05 AM
Response to Original message
18. my poor friend....
:hug::hug:

I am SO sorry you have to start over. What a horrible discovery in some ways, but perhaps some good will come when they determine exactly what needs to be done to give you the comfort you so deserve.

:loveya::loveya:

We are here when you need us, so please don't hesitate to ask.

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ThomCat Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 11:27 AM
Response to Reply #18
28. That's the way this seems to work...
The destination looks nice, but the trip to get there is hell. :P

I hope my doctors figure out my destination is. That would make the trip easier to take.

:hug:
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SalmonChantedEvening Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 11:08 AM
Response to Original message
20. All I can give are these Thom
:hug: :hug: :hug:

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ThomCat Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 11:28 AM
Response to Reply #20
29. Those are better than the meds I've been taking for the past year.
:P

:hug:

And all the side effects are good ones! :)
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SalmonChantedEvening Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 07:35 PM
Response to Reply #29
72. And they always make ya want more :)
:hug: :hug: :hug: :hug:

Vibes of strength and healing my friend, and all the hugs you can take.
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Darth_Kitten Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 11:13 AM
Response to Original message
24. You seem like such a sweet guy, I'm sorry about your health problems.
I hope they can get their act straight and help you out. :hug:
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ThomCat Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 11:30 AM
Response to Reply #24
32. I wonder how many chronic pain patients actually find the care they need.
:shrug:

I know of several people who can't get pain management treatment at all. And here I am complaining because the treatment I'm getting isn't helping. At least I've got doctors trying to help.

But I wonder if the doctors really have any kind of success rate dealing with chronic pain. :(
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applegrove Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 11:17 AM
Response to Original message
25. Sorry you are having such a tough time being diagnosed. Hopefully
with the new meds and better diagnosis all will be much better in the months to come than it has been for the last while.
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ThomCat Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 11:31 AM
Response to Reply #25
33. I certainly hope you are right.
:hug:

It would be nice if some time of progress was that close.
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applegrove Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 11:42 AM
Response to Reply #33
37. Never give up.
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TZ Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 11:28 AM
Response to Original message
30. Look at this way Thom
WHEN they figure out the correct diagnosis (and I think they will eventually) you will probably have a better treatment and a better quality of life for you:hug:
I went to Mayo with the goal of making sure I had the right diagnosis..and I do..and now, I think, I might be getting a little better...:hug:
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ThomCat Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 11:33 AM
Response to Reply #30
34. And when the time comes
I'm joining you on the Howling Commando raid against the Insurance industry! :grr:

:hug:

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NJmaverick Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 11:30 AM
Response to Original message
31. My personal opinion, is that each of us has to become our own health advocate
Don't count on doctors or anyone else, looking out for you. You need to work with your doctors. Be pro-active, do research on your own. Talk to your doctors, ask questions, learn what's going on, as best you can. No one has the incentive, like one's self, to make sure you are properly taken care of.
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ThomCat Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 11:36 AM
Response to Reply #31
35. That's a really good idea, most of the time.
But when the specialists are stumped, an amateur isn't going to be coming up with breakthrough medicine.

I'm assertive about my healthcare. That's how I got the group of specialists. But until you know what you're dealing with, armchair quarterbacking usually just gets in the way.

They've proposed, discussed, tested for, and dismissed possibilities I've never heard of before. It's hard to imagine how I can be telling them what to do.
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NJmaverick Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 12:34 PM
Response to Reply #35
43. It's not just about armchair quaterbacking.
It's about researching a learning. As you said, they have proposed and dismissed possibilities, you have never heard of. Make sure you learn about them, and their reasoning makes sense. It's also important to make sure you are seeing the best possible doctors for your situation. In this HMO era, MDs are reluctant (often with financial incentives involved) to refer patients. There is often an ego issue, when it involved referring to another specialist, in the same field. I learned the hard way (with irreversible knee damage) that not all Orthopedic doctors are equal, when it comes to treating a particular joint issue.

I don't think you have to make the Diagnosis or even second guess them. You do need to educate yourself, well enough, so that you can ask intelligent questions and understand what is being told to you.
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khashka Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 11:38 AM
Response to Original message
36. Lyrica might help, try it.
You can take it with other meds if you're careful. The major side effect I found was that I ate everything I could stuff in my mouth. I didn't gain weight but I'd eat 4 or 5 meals at one time. Didn't interfere with the morphine or codeine or BP meds or allergy meds. It was just expensive and send my grocery bill through the roof.

It can cause tremors. I only had that happen once, but it was severe and pretty scary. But it's worth a try. But anything's worth a try!

Sorry, my dearest Thomas Cattus. I know what you are going through. They can't decide if I have MS or not. The tests are "inconclusive".. But another spinal tap and someone's gonna get hurt and it won't be me.

Khash.
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ThomCat Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 11:44 AM
Response to Reply #36
38. I'm already in the chair because of weakness and tremors
already so I'm not so worried about that. I guess I'll deal.

The possibility of Lyrica messing with Morphine does worry, but not being able to take antihisamines worries me more, because that would indirectly prevent me from being able to take the Morphine.

Thank you for the warning about food. You're the second person to mention that, so I'm definitely going to have to be prepared, especially given that I can't easily shop for myself.

I'm sorry you don't have a firm diagnosis. It took them 5 years to finally diagnose my aunt with MS, and it had already progressed so far that she was homebound. It's truly scary how little they sometimes know for sure. :(

:hug:
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khashka Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 02:43 PM
Response to Reply #38
66. Sorry about the weakness and tremors
It sometimes passes. But sometimes it seems you traded one set of bad things for another. Sometimes it's worthwile, sometimes not. I know I'll never take Tegretol again. Totally fucked me up.
What astounds me is healthy people who don't get it. My mom called me upset she had a papercut on her thumb, I was nice. What I wanted to say was "Oh yeah? Today I can't even fucking walk!"

Khash.
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Haole Girl Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 11:51 AM
Response to Original message
39. Oh Thom...
Doctors can be so...(I won't say the word I want to use here) aggravating.

I hope they find out what is going on, and soon, for you.

Sending hugs and good thoughts your way... :hug: :hug: :hug:
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ThomCat Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 12:39 PM
Response to Reply #39
44. Hi KC2
I hope you're doing well. :hug:

I hope they figure something out. I would really love to see some progress. :)
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Haole Girl Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 01:03 PM
Response to Reply #44
55. I'm doing well, thanks
Except, I can't seem to calm down after seeing this one story on CNN...
about FEMA kicking the elderly and poor out of their trailers in New Orleans.

grr...
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ThomCat Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 01:05 PM
Response to Reply #55
56. I hadn't seen that yet.
We knew it was coming, but still... x(
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Haole Girl Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 01:10 PM
Response to Reply #56
57. I think my blood pressure is sky high at the moment....
and I am plotting, in my mind, things I could do about the situation. Maybe help with Habitat (http://www.habitat-nola.org) ... maybe take photos. Hmm.... I wonder if I could get away with flying in there on my own to take pics. It might not be wise, huh? (sigh)
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PassingFair Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 11:53 AM
Response to Original message
40. They should have taken those washers off a YEAR ago....
:)

Just kidding, I hope they find something CURABLE!
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ThomCat Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 12:44 PM
Response to Reply #40
46. LOL!
I still don't know how they got there. :P

Curable would be awesome! I don't know if I could dance for joy, but I'd sure as hell try. :)

I'll settle for treatable.
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Sanity Claws Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 11:54 AM
Response to Original message
41. I am so sorry to hear this.
I feel so bad for you.
I remember you had a diagnosis of RA. Are they now thinking it is not an autoimmune disease at all? Sometimes it's hard to distinguish one autoimmune disease from another since the symptoms overlap but aren't there clear cut markers as to whether something is an autoimmune disease or not?
As for your current symptoms, I hope they are just the effects of coming off the medications and not something that you live with.
Please keep us informed as to your progress. :hug:
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ThomCat Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 12:48 PM
Response to Reply #41
48. I tested positive for one of the two markers for RA.
And most of my symptoms match. So they were positive that they had the right diagnosis.

My Rheumatologist is sure it's not inflamation related, but I don't what they're thinking in terms of autoimmune diseases. I won't know until after the next round of tests, and until after I talk to my pain management doctor. He's the one I get the most information from.

:hug:
I hope I can keep you informed of things getting better. I hate posting when things are getting worse. :(
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graywarrior Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 11:54 AM
Response to Original message
42. Why am I not surprised?
That just sucks to hell, ThomCat. Anything I can do for ya?
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ThomCat Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 12:49 PM
Response to Reply #42
49. Hi Graywarrior!
:hug:

All you can do is keep sending good vibes. Everything else seems to be a matter of me having patience and endurance.
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supernova Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 12:39 PM
Response to Original message
45. (((ThomCat)))
:hug: :hug: :hug: :hug:

I've been quiet lately too, but it's just cuz I've been overwhelmed w/ work and a personal project. It will all even out soon. I hope.

I hope they are able to correct your diagnosis this time. I think being frustrated about what's going on is more frustrating than anything else.
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ThomCat Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 12:51 PM
Response to Reply #45
50. I hope that personal project goes very well.
:)

Going back to having almost daily migraines is definitely the worst part. :(
If not for that I could put up with the rest much more easily.
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otherlander Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 12:45 PM
Response to Original message
47. Oh, man, I am sorry.
Is there another painkiller they can put you on? Here's a hug:
:hug:
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ThomCat Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 12:53 PM
Response to Reply #47
51. I'll find out soon.
I've heard, over and over again, that nothing works as well and as safely as narcotic painkillers. And I've been very happy with the morphine. It works with an absolute minimum of side effects.

But if there is a non-narcotic alternative, I guess I'm going to have to start using it soon.

:hug:
May you never, ever have to experience any of this.
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DarkTirade Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 12:56 PM
Response to Original message
52. Crikey. :\
Well, it sucks now, but let's hope they figure out what's going on exactly so they can get you on the right meds and take care of it. :hug:
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ThomCat Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 01:00 PM
Response to Reply #52
53. If there are right meds out there, I'd love to find them.
It's got to be better than trial and error through one toxic combination after another. :(

:hug:
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DarkTirade Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 01:03 PM
Response to Reply #53
54. If I'm ever over on the other side of the state, you're definitely getting some quality cuddle time.
:hug: You sound like you need it.
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Dystopian Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 01:14 PM
Response to Original message
58. So very sorry....
Thom~
I know what it's like to go through hell while a correct diagnosis is found...
I'm so sorry.


My heart goes out to you...
All I can do is send prayers...:hug:

Please try to keep your spirits up in spite of all of this...
Easier said than done, but know things will get better for you...


:hug:

peace~
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ThomCat Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jun-02-08 07:22 AM
Response to Reply #58
82. Thank you.
:hug:

Today I take four bottles of meds back to the pharmacy to be disposed of because I don't take them anymore. It's no wonder I feel like I'm on a rollercoaster. :(

All I can do right now is hang on...
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HamdenRice Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 01:18 PM
Response to Original message
59. I'm so sorry Thom! But hopefully this is the first step toward real relief nt
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ThomCat Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jun-02-08 07:23 AM
Response to Reply #59
83. Hopefully.
I'm trying to be optimistic about this. But if that doesn't work, I'll settle for stuborn. Either way, I'll get through this. :)
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RetroLounge Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 01:19 PM
Response to Original message
60. Damn, Hope this gets ironed out soon...
You, my friend, deserve better...

:hug:

RL
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ThomCat Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jun-02-08 07:24 AM
Response to Reply #60
84. I don't know that the universe knows or cares what I deserve.
But this is what it's giving me, regardless. :P

:hug:
Hopefully the Lyrica will work and I'll be feeling better soon. If not, then hopefully the tests will point them in some useful direction.
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XemaSab Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 01:20 PM
Response to Original message
61. That SUCKS
Sorry to hear that. :(
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ThomCat Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jun-02-08 07:25 AM
Response to Reply #61
85. It totally does.
I'm back to have totally disrupted sleep patterns. I either can't sleep enough or I can't wake up, and I'm exhausted all day. x(

It's going to be a fun week at work.
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Flaxbee Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 01:27 PM
Response to Original message
62. ThomCat, I'm so sorry. It doesn't surprise me, though --
it took my mother's doctors several years to finally talk to one another and figure out what the f*ck was going on. The doctors finally started to talk to one another and coordinate medicine and diagnosis.

Anyway - I am so sorry you are hurting, and I think you are being extremely brave in coping with all this pain and hassle. :hi: I don't know if I could.

But I do see some good news - this "d'oh!" moment by your doctors perhaps will allow them to discover a series of meds for you that REALLY WORKS. That is what I dearly hope for you.
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ThomCat Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jun-02-08 07:26 AM
Response to Reply #62
86. I think more doctors need to have more "d'oh!" moments.
:P

It really seems like a lot of what they do is pure guesswork. :(
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Callalily Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 01:36 PM
Response to Original message
63. I feel so bad
for you ThomCat and there's nothing that I can do. So I'm going to keep you in my prayers and send tons of healing vibes. :hug:
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ThomCat Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jun-02-08 07:33 AM
Response to Reply #63
88. Hi, Simply Fugue!
:hug:

Thank you very much. That's the most anyone can do right now. :)

Several of my friends are sort of getting organized about me. I'm getting phone calls several times a day checking up on me and cheering me up. My nephew is making sure I eat, because I often forget to eat when I don't feel well. And one friend in Buffalo has said she's on standby to come move in with me for a week if I need it.

I really hate headaches, pain and sleep problems that come with changing meds, but I'm damned glad I have friends who understand and are there for me when it gets bad.
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lost-in-nj Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 01:43 PM
Response to Original message
64. I wish there was something I could do for you, anything
This just sounds so horrible for you.....




Thom..... :hug:



lost


:hi:
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ThomCat Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jun-02-08 07:35 AM
Response to Reply #64
89. It definitely isn't pleasant.
:(

The weather was wonderful yesterday but I still couldn't manage to get out of the house. Now I'm dragging myself to work. It's going to be a very long week.

I promised myself I was going to call you, but I'm waiting until I'm a bit more coherent and in a better mood. ZombieThom isn't a great conversationalist. :P

:hug:
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harmonicon Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 01:53 PM
Response to Original message
65. I'm sorry, buddy
As others have said, you can just hope that this is only a little bump on the way towards you feeling much much better than you would have on the present medications, and for a long while into the future.
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ThomCat Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jun-02-08 07:36 AM
Response to Reply #65
90. Almost anything would be better than the current meds.
I've become pretty good at managing side effects, but it would be nice if I got at least a little bit of the supposed benefit of the meds. :P

Ah well... In the long view I hope you're right and this is just a short patch of rough road. :)
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femmocrat Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 06:11 PM
Response to Original message
67. So sorry, ThomCat.... Damn doctors.....
Hope they get it right this time and you feel better soon. :hug:
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ThomCat Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jun-02-08 07:38 AM
Response to Reply #67
91. Thank you, Femmocrat.
:hug:

One month for this new set of meds, and if it doesn't work, then a new set each month until they figure something out...

I definitely hope they pick the lucky combination of meds soon. :)
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lizerdbits Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 06:21 PM
Response to Original message
68. I'm so sorry you're in so much misery
I guess I hold out some hope that maybe a new diagnosis will mean feeling better in the long run. But that doesn't help you now. :( :hug:
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ThomCat Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jun-02-08 07:40 AM
Response to Reply #68
92. No, having no diagnosis really sucks.
But in the long run, getting the right diagnosis is key. It would be nice to finally have meds that seem to work. :)

:hug:
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Madrone Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 06:33 PM
Response to Original message
69. I have my first rhumatologist appointment tomorrow.
You're scaring me!!! :scared:

lol - Good luck to you! Keep us posted. :hug:
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ThomCat Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jun-02-08 07:42 AM
Response to Reply #69
93. I'm sorry.
:(

:hug:

I hope it goes well, and I hope you get excellent care. My Rheumie really is an excellent doctor. It's my pain that's not being convenient. :P
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WinkyDink Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 06:43 PM
Response to Original message
70. {{ThomCat}} I know from migraines, but your combo boggles the mind.
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ThomCat Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jun-02-08 07:44 AM
Response to Reply #70
94. I seem to collect pain.
Migraines, chronic pain, kidney stones, heriated disks... if it hurts a hell of a lot it seems to find me. :(

I hope your migraines are few, far between, and minor. :hug:
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LadyoftheRabbits Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 06:52 PM
Response to Original message
71. Aww, Thom...
I'd give anything to be able to take away the pain. :hug: All I can say is that you are very loved. :loveya: :hug:
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lizziegrace Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 10:13 PM
Response to Reply #71
73. I second that
if I could take it away for just one day, I'd do it. :(

You sounded so drained on the phone today. I wish I was there with you. :hug:
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ThomCat Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jun-02-08 07:47 AM
Response to Reply #73
98. I'm a total zombie recently.
:coffee:

I really am drained. And it doesn't look good for this entire week. My sleeping is all screwed up, and that just makes things worse. :(

Hopefully you'll have an awesome week. :hug:
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ThomCat Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jun-02-08 07:44 AM
Response to Reply #71
95. Thank you, Lelapin!
:hug:

:loveya:
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jobycom Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 10:16 PM
Response to Original message
74. I think most people have to be having a much better time than you.
Wow. Sympathies out the wazzoo. Good luck.
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ThomCat Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jun-02-08 07:49 AM
Response to Reply #74
99. That's true.
:(

But hopefully that will change and I'll have some good days too. :)
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jobycom Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jun-02-08 11:49 AM
Response to Reply #99
120. Hope so. At least they know they have to do something different now.
Sometimes the hardest part is convincing a doctor to admit a mistake and try something new.
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ismnotwasm Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 10:19 PM
Response to Original message
75. Aw Man
:hug: Hope you get some relief soon
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ThomCat Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jun-02-08 07:50 AM
Response to Reply #75
100. Thank you, ismnotwasm.
:hug:

If I could sleep well that would go a long way. Hopefully things will be under control soon. :)
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Fire Walk With Me Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 10:34 PM
Response to Original message
76. Oh Tom, be well...
:hug: for what it's worth...
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ThomCat Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jun-02-08 07:51 AM
Response to Reply #76
101. That's worth quite a lot.
:hug:

I'm doing my best to be well. It's a suprisingly time consuming job. :P
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Oldtimeralso Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 10:47 PM
Response to Original message
77. ThomCat
Here is a site that has a lot of people (men in general as fibro is considered a women's disease) that might be of great help. It has helped me greatly and some of the issues you have brought up are discussed in the forum pages.
http://www.menwithfibro.com/home.html
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ThomCat Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jun-02-08 07:54 AM
Response to Reply #77
102. Very cool.
Thank you. :hug:

My doctors don't know if it's Fibro. They're guessing at this point. But if so, I definitely have to find some places to talk with other people with it. That looks like a good place to start.
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WCGreen Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 10:49 PM
Response to Original message
78. I'm not anywhere near your level of discomfort...
But my meds have all sorts of side effects that kind of makes me think the cure is not always worth the pain and discomfort.
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ThomCat Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jun-02-08 07:55 AM
Response to Reply #78
103. You're right.
I often debate whether the side effects are worth it. :(

How bad would my primary symptoms be if I stopped taking all my meds and got rid of the side effects?
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fizzgig Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jun-01-08 11:44 PM
Response to Original message
79. oh sweetheart
i hope things get taken care of as quickly as possible.

i wish i could do more than this :hug:
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ThomCat Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jun-02-08 07:57 AM
Response to Reply #79
104. I just hope there are some answers down the road that will help.
:(

:hug:
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KitchenWitch Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jun-02-08 12:30 AM
Response to Original message
80. My heart is breaking for you.
:cry:

:hug:

You know if we had the power to take it all away, we would.

:loveya:
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ThomCat Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jun-02-08 07:59 AM
Response to Reply #80
105. Hi KitchenWitch.
:hug:

But where would be put it? :P

Right now it's just a matter of hanging on until they find some answers and something that works.
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CaliforniaPeggy Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jun-02-08 12:36 AM
Response to Original message
81. My dear ThomCat...
Everyone has spoken so eloquently here...

I wish I had the words that could take away your pain, and give you back a healthy pain-free body...

But I don't.

All I have are these: :loveya: :hug:
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ThomCat Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jun-02-08 08:01 AM
Response to Reply #81
106. Hi Peggy,
:hug:

Those work as well as most meds, and have much better side effects. :)
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bertha katzenengel Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jun-02-08 07:31 AM
Response to Original message
87. Oh, Thom.
:hug: :loveya: :hug: would that i could hug you IRL.
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ThomCat Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jun-02-08 08:02 AM
Response to Reply #87
108. I've become very hard to hug IRL.
I've become kind of stiff and fragile. :(

But virtual hugs are always welcome. I can still hug with the best online. :hug:
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bertha katzenengel Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jun-02-08 08:08 AM
Response to Reply #108
111. does it hurt you to be touched?
If not, I'd rub lotion into your hands. I think touch is very important.

:hug:
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ThomCat Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jun-02-08 08:10 AM
Response to Reply #111
113. Oh yes.
That's one of the issues that led to my breakup last year after a 4.5 year relationship. It's hard to be in a relationship if you can't touch each other. x(
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bertha katzenengel Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jun-02-08 08:23 AM
Response to Reply #113
119. oh, god, Thom
:hug: I don't know what to say.
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NewJeffCT Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jun-02-08 07:47 AM
Response to Original message
96. Thom
Sorry to hear about all of your problems... I wish there was something I could do besides tell you that we're all pulling for you to get better soon.

:grouphug:
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ThomCat Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jun-02-08 08:04 AM
Response to Reply #96
109. I'm sorry I haven't had more pleasant stuff to post.
:(

I promise to be a more cheerful member of the lounge again soon. One way or another I'm going to get past all of this for a while. :)

:hug:
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NewJeffCT Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jun-02-08 08:15 AM
Response to Reply #109
117. Don't worry about it
Just take care of yourself - don't worry about your cheerful post count.

Once you're healthy & happy, it will make a lot of DUers here very cheerful.
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raccoon Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jun-02-08 07:47 AM
Response to Original message
97. I'm sorry to hear this, ThomCat. I hope they figure out what it really is.
Doctors threw me under the bus when I developed RSI in the '90's. They didn't want to give me the time of day. I feel your pain.

You'll be in my thoughts. :hug: :hi:
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ThomCat Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jun-02-08 08:06 AM
Response to Reply #97
110. Wow... I'm very sorry.
It seems like people have had horrible situations with horrible doctors. :(

I'm lucky in that regard. I've got wonderful doctors who try everything they can.

How are you doing now? :hug:
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raccoon Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jun-02-08 08:10 AM
Response to Reply #110
114. Lots better, thanks.

:-)

Sometimes it flares up if I'm on the computer too much or do something else that aggravates it.

Most of the time it doesn't bother me. Of course, it limits my employment options considerably, but I'm doing OK in the job I have now.

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xchrom Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jun-02-08 08:02 AM
Response to Original message
107. i'm so sorry thomcat --
it must be terrible to be in that much pain.

i hope your docs get their act together and move with all due haste to get you set right.

:hug:
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ThomCat Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jun-02-08 08:08 AM
Response to Reply #107
112. Hi xchrom!
:hug:

It's definitely not a fun life, but it's life. Hopefully it will improve soon. It would be nice to see some improvement. :)

Actually, it would be nice if we could flood the lounge with great posts about things that are improving. :P
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Robb Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jun-02-08 08:10 AM
Response to Original message
115. Man. Get well, TC
Seems a trite thing to say, but I mean it. :)
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ThomCat Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jun-02-08 08:13 AM
Response to Reply #115
116. Thank you, Robb.
It's not trite at all. :hug:

Hopefully, I can get well. That would be wonderful. I'm definitely doing my best. :)
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miss_american_pie Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jun-02-08 08:19 AM
Response to Original message
118. I'm sorry sweetie
Edited on Mon Jun-02-08 08:20 AM by miss_american_pie
:hug:
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ceile Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jun-02-08 11:52 AM
Response to Original message
121. Geez....I am so sorry.
There are no words. I hope they get it right this time. All you've been through and now this....:hug:
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yellowdogintexas Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jun-02-08 11:53 AM
Response to Original message
122. Thom, I do hope you get this worked out
I know it has been a long hard painful ordeal


:grouphug: :hug: :cry: :pals:
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Oeditpus Rex Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jun-02-08 11:55 AM
Response to Original message
123. Y'know, dude...
it seems you oughta be entitled to some form of compensation for this, like free health care for the rest of your life.

Doctors should not be permitted to get away with "Oops."

:hug:



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redqueen Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jun-02-08 11:56 AM
Response to Original message
124. Jesus, that's horrible.
:(

I hope they can somehow make this transition easier for you.

:hug:
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Parche Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jun-02-08 01:01 PM
Response to Original message
125. Big Hugs
So much for our great health care system

:hug: :hug: :hug: :hug: :hug:

:hi:

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LynzM Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jun-02-08 03:01 PM
Response to Original message
126. Oh Thom....
I don't even know what to say... I'm so sorry. :( It's so unfair that you're going through this, and I really wish I could fix it for you. Please let me know if there's anything I can do from up here, ok? You're always welcome to call me, and I'm always glad to send care packages if there's anything I can do...

Love and hugs to you, my friend... :hug: :loveya:
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Shine Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jun-02-08 03:04 PM
Response to Original message
127. Damn, I'm sorry.
:hug: I am sending you vibes for Healing, Comfort and Clarity. :hug:

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SallyMander Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jun-02-08 03:05 PM
Response to Original message
128. I am so, so sorry TC

You are the last person in the world to deserve all this pain and trouble. :(

I wish there were anything at all i could do! I will be sending many e-hugs and healthy vibes.

:hug: :loveya: :hug:
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libnnc Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jun-02-08 03:17 PM
Response to Original message
129. I'm really sorry you're going through that Thom
hope they can get it straightened out for you soon

in the meantime......gentle hugs :hug: :hug: :hug: :hug: :hug: :hug:
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