debutaunt.com: They can't tell you what's wrong with you

July 30, 2008

They can't tell you what's wrong with you

But they make a guess anyway.

Steroids. It's steroids. The pain. The nausea. Everything is related to steroids. Funny, they always say that. I'm sorry but I really really disagree. The pain is localized. Last time I told a doc I was in terrible pain, it turned out that *wow* I had herniated 3 discs in my back.

It isn't anything detectable in a blood test, so that's kindasorta good news. At least I think so.

I got 11 prescriptions for $58 too. That was worth the visit as they usually cost about 3x that when I get them in the mail.

They are scheduling an appointment next month for me to see the Pain Management group. I'm assuming that they also try to find the cause of the pain, and if they don't know, how to manage what you've got. I'll try anything. My muscles feel like they are on fire - mostly shoulder and neck pain. It's like whiplash.

The docs didn't seem too concerned about:

The fevers
The painful lymph-nodes (said they weren't swollen - uh, yeah. they are)
The nausea
The fainting (once)
The muscle cramps
The fingers freezing up and "sticking"
The night sweats
The chills
The vein that has become very prominent and spread across my chest
The difficulty in swallowing
The coughing at night and when I eat
The weird way I think I smell (Zoe says, "Like a robot.")

I guess they see so many really really sick people that because I "look great" that I must feel great. I wish I looked as bad as I feel and then maybe someone would really do something.

I don't want to take pain meds, but since I haven't for about 4 days now, I'm going to get my drug on like Donkey Kong tonight.

I won't have internet access in New Braunfels, so I'll be away at least until after Sunday.

Ok. Need to pack it all into my car. Thanks for the snappy answers to stoopid questions.

I can do this. I don't know why but I just can.

Your assignment is to find someplace to go swimming and GO. It's just too damn hot to do anything else!

Tim, I love you more than I love sushi. And Sixbucks. More than sushi with a Sixbucks.

Posted by debutaunt at July 30, 2008 07:11 PM

Comments

Note to Tim: "love you more than I love sushi. And Sixbucks. More than sushi with a Sixbucks" is a HELLA lot, from what I gather about Ms. Deb.

Deb, I hope the pain and other symptoms get shoved out of your universe tonight and then you can try to get a handle on it over the long haul. Will they ever get you off the steroids? Our kids (or most that I know who have been treated for cancer) who have been on steroids eventually have some sort of fallout from them so I hope the docs can figure out if this really is from the demon-drugs and maybe figure out if you can dump them sometime and get on with living happily ever after!

Have a GREAT time in NB!!!

Posted by: Bren/Cody'sMom at July 30, 2008 09:11 PM

So glad your blood work looks good! The pain part sucks, and so does the fact that they don't get it. I hope they can help you figure it out soon.

Have fun in NB!

Posted by: Sharkey at July 30, 2008 09:51 PM

Can't you just have one Happy comment! You're breathing so knock off the pity party.

Posted by: Susie at July 31, 2008 12:55 PM

Good blood work is good. Focus on that. I hate that they can't find the cause. This just sucks. Hang in there. We are sending prayers and good thoughts.

Posted by: Missy at July 31, 2008 06:31 PM

Well I read the previous comment that Susie left-and that for me would be lets ban her now.

Mean, judgemental people suck.

I hope you have a great time on your trip.
And I pray for you each and every night.

I wonder if Susie has or has ever had cancer?

"walk a mile in my shoes".

I pray for better answers and better days for you.

You are a hero!

Posted by: claire at July 31, 2008 07:20 PM

Yes, this is Deb's Tim. Deb hasn't read these comments yet so I am beating her to the punch.

For over 30 years I have been involved in athletics either as a coach, athletic director or official. Personally, other than a handful of sports-related orthopedic injuries the worst I have had to deal with is chronic acid reflux. My life has constantly been defined by healthy, active bodies before I met Deb.

Susie, consider yourself lucky that I am in a pretty good mood today. I guarantee you that in 25+ years of umpiring college and/or pro baseball I have learned the art of very pointedly and effectively ripping someone to shreds. So here is all I have to say...

You don't GET to define the terms under which Deb chooses to post her thoughts. If you have read through this blog at all you will know that it is a vacillation between triumph and despair...in other words, a valiant effort in allowing you into the privacy of her very real life and death struggle. The happy comes when it comes...the despair also comes when it comes. It's not a friggin pity party. I know because I have seen it firsthand.

Where were you, Susie, when her hand cramped up so bad that I literally had to pry her fingers back into normal position only to have them lock back up again?

Where were you, Susie, when the pain in her neck was so severe that I woke up once to hear her sobbing in her sleep from the pain? And in attempting to massage it loose encountered muscles so knotted that it was like trying to knead a floorboard?

Where were you when the very real tears were streaming down her face and when I asked what's wrong she said very earnestly, "I hurt so bad, I'm really afraid I'm dying"?

I could go on but hopefully you get the picture. I coached high school wrestling for seven years and have gotten pretty good at picking out somebody who is looking for a pity break. After six weeks of watching this woman go through day after day of hell I can guaran-freaking-tee you that what you have been reading is only the tip of the iceberg of her reality.

So I will say to you the same thing that I say to those who look askance and cluck their tongue at my beautiful but autism afflicted daughter: You are ignorant. And tonight you should get down on your knees and thank God with every fiber of your being that you GET to be ignorant, Susie. Because in that ignorance you get to cruise along in your own narrow, comfortable existence without having to know firsthand just how really awful it is to have your body or mind (or that of someone you love) robbed by something that they never asked for and didn't deserve.

So if you want happy comments go visit shinyhappyrainbowponies.com or some other claptrap. This is real life here. And real life sometimes gets decidedly less than happy.

P.S. - Yeah, Deb, but now that I've introduced you to the Maplewood loving me more than Sixbucks isn't all THAT anymore! :P I love you too! (More than Mongolian Grill!) :D

Posted by: Tim (aka debu_Sweetie) at August 2, 2008 07:31 PM

WoW, yeah to Tim's response....

Your true friends know that every day is a struggle for you Deb, some with victories and some without...either way, we are with you through it all...keep blogging, and don't you let one bad apple spoil the whole bunch Girl...(ok, Donny Osmond I ain't!!!).

Posted by: Cheryl at August 3, 2008 07:26 AM

WoW, yeah to Tim's response....

Posted by: Cheryl at August 3, 2008 07:26 AM

Way to go Tim - I love that you love Deb this much :) :) :)

And to Susie - back it out of here woman, you know not of what you speak.

Posted by: Fiona at August 3, 2008 07:41 PM