Author Topic: Looking for some good thoughts from my WWU Warriors  (Read 7346 times)

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Offline Pooh

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Looking for some good thoughts from my WWU Warriors
« on: February 06, 2011, 01:52:25 PM »
Help me out here ladies.  I had a Doctor's appointment Friday and didn't get very good news.  I have some new signs and symptoms, that the Doctor is very concerned about.  I have said that my Doctor is 99% I have Lupus, but no official diagnosis until I have the brain scan.  Well, now he is going....It's Lupus and very progressive right now.  My thyroid appears to be enlarged, which is common for Lupus, but normally takes a few years.  I have also developed some major hip and knee pain, which is also common.  I was running a mild fever, but not sick, which is also a major sign.

So he will be calling this week to schedule a full thyroid blood panel and a ultrasound.  He is also referring me on to a Rheumatologist because he feels like it is Lupus and progressing too fast.  Ok, I can handle all that.  I think the biggie is he said if the Rheumatologist does agree that it is Lupus and very progressive right now, they will start me on rounds of medication that will make me very sick.  He said the medicines are the same they use in Chemo, and no fun.  But, they have to attack it before it starts attacking my organs.

So I am asking for good thoughts from you guys that the Rheumatologist says it's something else that can be cured, or that I can tolerate the treatment well as I am not looking forward to it.
We must let go of the life we have planned, so as to accept the one that is waiting for us. -
Joseph Campbell

Offline luise.volta

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Re: Looking for some good thoughts from my WWU Warriors
« Reply #1 on: February 06, 2011, 01:59:23 PM »
Sending all kinds of positive vibes. That sounds scary and I am with you every step of the way.
"Courage doesn't always roar. Sometimes it's a quiet voice at the end of the day saying, I'll try again tomorrow." -- Mary Ann Radmacher

holliberri

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Re: Looking for some good thoughts from my WWU Warriors
« Reply #2 on: February 06, 2011, 02:06:35 PM »
Oh no, Pooh!

I'm sorry about this...I'll be hoping for the best outcome. Please keep us posted. I know that must be very scary.


Offline Pooh

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Re: Looking for some good thoughts from my WWU Warriors
« Reply #3 on: February 06, 2011, 02:11:01 PM »
Thanks guys. I am not going to lie, I am scared.  I will deal with it and do what I must, but scared none the less.  Want to hear the worst part of my fear?  I hate to throw up!  I mean...hate it with a passion.  I know its not funny, but part of me is like, so that's what you are dreading?  That's sooo sad.  And just so you guys know, DH and I had our first kind-of fight because I withheld information from him.  He showed up for my Doc's appointment (I wasn't expecting him to be there) and when my Doc started poking and asking questions, I had to admit in front of him some more of the symptoms.  I purposefully didn't tell him some of them, because he worries...so I got in major trouble! 
We must let go of the life we have planned, so as to accept the one that is waiting for us. -
Joseph Campbell

LaurieS

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Re: Looking for some good thoughts from my WWU Warriors
« Reply #4 on: February 06, 2011, 02:12:42 PM »
Pooh.. I have a feeling that you will handle anything thrown your way.  The most important thing to me would be finding out exactly what is going on, you can't combat an unknown enemy.

You complaint of hip pain may be the results of wild weekend mornings.. so they might rule that problem out.

Of course our thought, hopes, love, and fears are with you.. every step of the way... anything we can do name it..

LaurieS

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Re: Looking for some good thoughts from my WWU Warriors
« Reply #5 on: February 06, 2011, 02:14:10 PM »
Thanks guys. I am not going to lie, I am scared.  I will deal with it and do what I must, but scared none the less.  Want to hear the worst part of my fear?  I hate to throw up!  I mean...hate it with a passion.  I know its not funny, but part of me is like, so that's what you are dreading?  That's sooo sad.  And just so you guys know, DH and I had our first kind-of fight because I withheld information from him.  He showed up for my Doc's appointment (I wasn't expecting him to be there) and when my Doc started poking and asking questions, I had to admit in front of him some more of the symptoms.  I purposefully didn't tell him some of them, because he worries...so I got in major trouble!

As well you should have been in trouble.. he can't help you if you aren't upfront and honest... don't do that again Pooh

Offline Pooh

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Re: Looking for some good thoughts from my WWU Warriors
« Reply #6 on: February 06, 2011, 02:26:58 PM »
Yeah, I know.  In my defense, he takes my pain hard.  He hates it with a passion and I have developed what they call "hot spots".  Basically, at any time you can touch me somewhere, just innocently on the arm and you will hit one of those and it hurts like the dickens for a second.  He is always touching me...just holding my hand, stroking my arm and stuff.  So I know him well enough to know if he knew it hurt sometimes, he would quit. 

I have told him all my major stuff, just a couple of little things like that to hold down on his worrying.  But when they said I had a mild fever, I mentioned, you know...I have been feeling like I have ran one off and on for the last couple of months.  Yeah, I didn't tell him that either, cause it comes and goes and I figured it was nothing.

So I did make a promise to tell him everything now, even if it was something I didn't think was important. 
We must let go of the life we have planned, so as to accept the one that is waiting for us. -
Joseph Campbell

Offline Pooh

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Re: Looking for some good thoughts from my WWU Warriors
« Reply #7 on: February 06, 2011, 02:28:54 PM »
And thank you all for the well wishes.  I will let you know what happens this week.
We must let go of the life we have planned, so as to accept the one that is waiting for us. -
Joseph Campbell

Offline luise.volta

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Re: Looking for some good thoughts from my WWU Warriors
« Reply #8 on: February 06, 2011, 02:55:57 PM »
We're walking the walk, Pooh! Sending love...
"Courage doesn't always roar. Sometimes it's a quiet voice at the end of the day saying, I'll try again tomorrow." -- Mary Ann Radmacher

Faithlooksup

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Re: Looking for some good thoughts from my WWU Warriors
« Reply #9 on: February 06, 2011, 03:05:11 PM »
Sending Love, Hugs, Prayers, and good thoughts your way...Remember you are also a WWU Warrior!!!!!! 

Faith

Offline pam1

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Re: Looking for some good thoughts from my WWU Warriors
« Reply #10 on: February 06, 2011, 04:07:18 PM »
Sending all good wishes, Pooh.

I don't know if this will help but I interned in a chiro's office for a while and there was a patient with lupus who felt it really helped her.  I don't know any details but maybe?
People throw rocks at things that shine - Taylor Swift

Offline Pen

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Re: Looking for some good thoughts from my WWU Warriors
« Reply #11 on: February 06, 2011, 04:49:50 PM »
Pooh, we're thinking of you and sending all good thoughts your way. I understand why you didn't tell DH everything - who wants to be seen as an invalid by their spouse? But I think he has let you know he doesn't see it that way and wants to be informed. You've got a keeper there, Pooh.
Respect ... is appreciation of the separateness of the other person, of the ways in which he or she is unique.
-- Annie Gottlieb

holliberri

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Re: Looking for some good thoughts from my WWU Warriors
« Reply #12 on: February 06, 2011, 04:55:04 PM »
Pooh,

It also occured to me that there is a patient with Lupus at my chiro office as well (thanks, Pam)...she said it has helped her. My mom is a massage therapist, and a lot of her clients have lupus as well. Would muscle stimulation help? 

Offline jill

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Re: Looking for some good thoughts from my WWU Warriors
« Reply #13 on: February 06, 2011, 05:03:28 PM »
Hi Pooh,
Just wanted to know I am wishing you well, will say a prayer for you.  I am always amazed in your posts how upbeat and positive you sound, and I am sure you will do well.  Best wishes...Jill

:):):):)

Offline Pooh

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Re: Looking for some good thoughts from my WWU Warriors
« Reply #14 on: February 07, 2011, 05:42:55 AM »
You guys are the best!  Thank you. 

Holli and Pam, I am not sure about the chiro (I do believe in them).  They haven't mentioned that, but of course they are still trying to figure out if it is 100% Lupus.  There are 2 blood markers that guarantee it is, one shows up in 97% of lupus patients, one shows up in 30%.  So if you have both, it's a definate.  If you don't, then only a Rheumatologist can offically give a diagnosis of Lupus, based on symptoms, blood and other things.  I am throwing the first marker, but not the second, which he says is common.  But I now have about 8 of the big 10 symptoms.

I don't know about the chiro, but I could definately see the massage therapist helping as my muscles spasm and tighten up.  All my scans show my neck and back in alignment with just normal (cough cough) aging.  The 6 weeks of physical therapy he sent me to a few months ago, to try and help the shoulder and arm, the girls ended up just doing massage and the tens machine because my muscles were so tight I couldn't do many of the exercises.  It helped bunches just relaxing the muscles.  I am on a daily muscle relaxer...Lol...and I am such a weenie when it comes to medicine, I take it before bed and sleep through the fog.  (Everything puts me to sleep).
We must let go of the life we have planned, so as to accept the one that is waiting for us. -
Joseph Campbell