Friday, August 15, 2008

Perky Kristy Has Left The Building

Well, hmm...

Now that Sophie is finally "fixed", here we are - contending with my seemingly neverending medical stuff. A little switcharoo, of sorts, it seems. Actually, I'm starting to wonder if God brought us through the Sophie stuff, just so we could take on this new trial. I mean, it would get pretty tricky - trying to corral barf and syringe her from my new favorite flat-on-the-floor position.

I know God never promised that life would be easy. Quite the contrary, in fact - He promised troubled times and suffering here on Earth. Not 'til Heaven do we get the bliss. I get that, I really do. And I'm okay with that. I don't expect blue skies and calm waters all the time. But my goodness gracious, what I wouldn't give to not have to deal with feeling crapola for awhile. Even just a little while. One blissful poo-free week - that's what I'm looking for.

Yes, it's true. I'm cranky.

Let's start with the good news. Some of you may have already heard: the "little breast incident" (as I now like to think of it) turned out A-okay. The scary spot that looked alarmingly to the doctors like IBC turned out to be just a really ticked off inclusion cyst, with lots and lots of inflamed tissue under it. All that remains from that Scary Thursday is one Bad Dude Scar. It kind of looks like I was involved in an altercation with a shark. One rather impressive CHOMP. ...From a shark with a predisposition for large breasts.

Phew!

So what do I wake up to this morning? The other boob - with a spot all red-ish/purple and weird. Inflamed looking. What is causing all of this stinking inflammation?! Plus, I'm still cling-to-things crazy dizzy. Still gastrically challenged. Still achy. Still having unbelievably debilitating headaches. Which means...yep, still sporting my fantastically stylish Ace bandage. (It's going to catch on, I'm telling you!)

What in the name of Mystery Diagnosis is going ON WITH ME???

The doctors certainly don't know.

Yeah. I'm starting to lose faith in the medical community. (Sorry, dad.) I feel like I'm just constantly getting passed from specialist to specialist. Each running their particular gamut of not so fun tests. Only to be passed to the next expert. None of which seems overly interested in actually listening to me. Isn't "listening" kind of a prerequisite to "diagnosing"?

I've encountered a couple of gems during my Doctor Tour of 2008 who don't seem to think so. One in particular had his nose so far buried in his laptop (they don't use pen and paper anymore, by the way, to record things) - click, click, clicking away. Picking the boxes that he thought fit me. Like he was filling out the Create-Your-Own-Fajita form at Chili's. I'm still not sure how he made his selections since he had yet to hear me speak concerning my symptoms. He kept his head buried, yelling out: "Headaches?" "Mouth sores?" "Pain in your joints?" I seriously felt like I needed to hop-to and salute. Sir, yes, sir!! After his form filling out shenanigans, he stood up. "On the table." He pointed. I hopped up and he launched into a poking frenzy. "Does it hurt here? Here? Here? How about here?" I barely had time to get out a yep, nope, yep, yep and he was back on his stool, furiously clicking buttons again. He then declared me to have "some sort of connective tissue disease...with probably some fibromyalgia too". Or, he said, "It's possible you have something else." And then he walked out.

He walked out, people! I didn't know if he was going to get a prescription pad or a referral form or possibly some conclude-our-splendid-time-together whiskey for both of us to shoot... So I waited for fifteen minutes there in my paper gown before finally peeking out in the hall where his nurse was standing. I asked if he was through with me and she said, "Well, yes. I think so."

"Connective Tissue Disease with a swirl of Fibromyalgia, bye, bye! I'm off to an office full of people anxious to remain mute while I sum them up clicking through my nifty laptop. See ya!" What the frick? Kind of reminded me of Dr. Vestibular, who determined my dizziness wasn't vestibularly motivated in the first minute and a half of seeing me. How could he tell? What can you possibly tell in ninety seconds? ...Other than that I've had a bath prior to my appointment, you're welcome.

I'm telling you, I am thisclose to going stark-raving LOCO on some poor unsuspecting doctor. As in: institutionally nuts. All it's going to take is the illusion of boredom or aloofness, and that's going to be it. They're going to need to yell for the straight jacket and tazer gun.

WRITE IT DOWN! This date. This time. I officially warned The Internet about the moment that will result in me being the lead story on the local news.

Aaaaaaaa! I need to decompress. Perhaps jet off to the islands. Sip some fruity drinks. Breeeeeeeeathe.

So. Where'd this little treat of an emotional dump come from, you ask? I don't know. After almost a solid year of dealing with this junk, I guess I've had it. I'm worn out. Monday I'm having a CTA of the arteries in my brain (when I pressed the neurologist on whether that was really necessary, he proceeded to share a lovely little story about a woman my age with five aneurysms) and a lumbar puncture. Otherwise known as a spinal tap. Tree-trunk needle in my spine time. Bring out the iodine and party hats!!

Or maybe it's because Sophie's birthday is one week away and I'm too stinking exhausted and yucky feeling to even plan for it. I can't even get out of my p.j's or comb the bird's nest out of my hair half the time these days, much less shop for her presents and party supplies, make invitations, and order a cake with her face on it. (That's what she wants this year. Her face, surrounded by rainbows and flowers. How does she come up with this stuff?) Nor can I imagine taking on Chuck E. Cheese and his menagerie of freakishly large, dancing rodent friends for an evening. Oh, man, the video games. The rides - flashing, whirring, blinking, beeping. Dizzy? Here, have a seizure instead. Dear Lord, help me next Friday. (Hee.)

It's getting to me. Some days more than others. I feel like I'm missing things. I feel like I've lost my fun. I totally sympathize with Stella. I need to get my groove back too. (How'd she do it? Oh, yeah, I seem to remember it had something to do with Tae Diggs. And rediscovering their Inner Hormonal Teenage Selves together.)

Maybe I need to read this a few hundred times. I should probably print it out and tape it to my forehead for easy reference.

******

What do you guys think? Won't this face look nice on a birthday cake?

Or maybe I should go with this one... Aw.

28 comments:

Anonymous said...

Oh, Kris... this just sucks! I'm so sorry you are dealing with this new round of junk that won't go away. Hang in there, buddy. We think about you all the time and love you lots.
We need to talk soon. Walt's in France for a week so I have some time to chat it up, if you feel up to it.
Love you,
Annie

Val said...

Oh, I'm so sorry this is so frustrating for you!! On top of all that, I'm sure it's so hard to keep up with a bouncy, perky (almost) 4-year-old.

We're praying for you and your doctors, as I know people all over the world are!!

Hang in there!

Kritter Krit said...

Thanks you guys! I really appreciate the encouragement. I'm just worn out, and not finding any answers is really discouraging. It starts to make you feel a tad panicky - like it's not going to end. I'm trying to spend more time praying and reading the Bible. Trying to lean on God for peace through this mess.

Thanks so much for praying!

P.S Annie, Mark got Skype set up. I should be "activated" (I got an email telling me that), but I'm not sure what happens now. How do I call you guys or you call me?

Lindsey said...

I can't imagine. I hope that you have exhausted every possible internet search of your symptoms because you never know... you might come up with the answer yourself! Then, you can go and TELL a dr. what is wrong with you so you can get TREATMENT! (Oi Vey, I am sorry)

Kritter Krit said...

Lindsey,

Yeah, I've kind of decided it's best to avoid the internet. IN my frustration I did a little poking around there, and all it led to was feeling that much MORE frustrated and freaked out. Every search just leads to scarier and scarier options. And without the medical knowledge to know how to interpret the information...well, it's just not good. Not feeling the way I am currently, anyway.

So now I just pray often, continuously throughout the day, that ONE of the doctors involved in this mess will have a "HARK!" lightbulb moment and figure it out.

Good to hear from you! I've missed your comments. =)

sarah p said...

I'm praying for you...I'm sorry you're feeling so bad.

Kristen said...

Kristy, I am so sorry that you are dealing with all these unknown health issues. I am always thinking of you and sending lots of positive thoughts your way. I hope that the MDs are able to give you a working diagnosis and treatment soon. Hang in there.

Anonymous said...

Ok--I don't even know if you will remember me. I am Jill (Leanne's sister--from College Station TX). I don't remember if Leanne sent me your blog or if it was my mom, but I just want to let you know that I LOVE It!! I read it daily and tonight my kids were in bed at a reasonable time so I read some of the older posts. I was literally lauging until I cried!! (Especially the one about Russell sleep talkig). Anyway--I just wanted to say hi and let you know that I am praying for your family and constantly (literally) reading your blog!!
Jill

The Mani said...

Love you, Cheech. We're praying that you'll feel better soon...and stay feeling better. I know Soph will have a fun birthday even if it's just eating her "face" cake with you and Russ...her two favorite people. I vote the first picture for the cake.

Love you. -Lis

Wendy said...

Hey Kristy,
I found a page on the web that might be useful to you

http://www.msakc.org/Articles/MSFibroLupus.htm

I'm so sorry you are feeling so terrible. Bob and I both have you in our thoughts.
I haven't had the best experience with doctors lately. I've fired three of them in that last 2 years, all related to obstetric issues. I've had doctors recommend procedures to me that were completely unsupported by the current literature (although I'm sure that's what they were teaching in the medical schools fifteen years ago), and give me answers to questions that I could expose as being patently wrong after about 2 minutes searching about.com, the mayo clinic web site, or pretty much any other public domain source for med info. I think it takes awhile for some of them to figure out what they are doing, and some of them never do outside of the range of really standard complaints.
Keep bugging the heck out of them, and you will eventually find out what you need to know to improve your symptoms. Meanwhile keep up with your faith and whatever is bringing joy into your life during this frustrating time. I always get a little joy out of your web page, your good humour, and all the wonderful pictures and stories about Sophie, so many thanks for that.

Megan said...

I just read through your 101 things and haven't laughed so hard in as long as I can remember. I cried and maybe even snorted a little bit :).

So, thanks for that! I definitely will be back.

I found your blog through Josh Hale's. He is married to my sister-in-law.

p.s. I went to Hendrix too and graduated a year after Zach and Lisa.

emily said...

Kristy~

Sorry about all this crud. I can only imagine how frustrating this is. We'll keep praying for an answer SOON!

Kristie said...

Kristy you are def in my prayers, I hope you get some answers and relief very soon. Keep us posted as you can. Im sending big hugs your way!

Robert (Bob) English said...

Kristy,
Our secretary at work (she has retired recently) had a severe case of fibromyalgia, and after many doctor visits, the doctor sent her to a "wholistic" doctor who told her which foods to avoid......and she said the change was DRAMATIC! Artificial sweetners, meat, caffeine, and many other foods....after she quit them, her fibromyalgia improved (along with pills I think). In any case, if you want more info from her about her condition, I can email her and let you know what she says??? The doc did tell her that artificial sweetners were one of the worst things that aggravated her condition. There were some days when she couldn't get out of bed, or even hold a coffee cup. She limited herself to one cup of coffee in the morning. If she ate meat, she noticed that her fibromyalgia kicked in some the next day. Anyway, it appeared that her diet changed helped tremendously. Maybe do some online chekcing on this and see what you find??

Regards,
Rob

Anonymous said...

hey kris....
sorry about all the stuff you are going through.
hang in there..... hopefully you'll get some answers soon. we miss you.
walt

Not quite the Bradys said...

Doctors stink. I went through a similarly irritating round of tests/doctors/aloofness/etc about twelve years ago. After 9 months of specialists they finally figured out my problem (and realized that not only was it not in my head, it was actually quite dangerous) and I got some help thank you very much. But I totally empathize with the whole not being listened to thing.

As far as the birthday party- two words: Buildabear Workshop. You just have to present the options (party or buildabear) in such a way that Sophie understands that the right answer is a no-brainer and she is actually making out like a bandit. : )

Good luck. Glad you're back online.

Kristie said...

Kristy I just wanted to let you know that im still praying for you, I hope you get some answers/relief soon.

Ps I cant believe your princess is 4yrs old already. Thank the Lord she is able to go and enjoy eating/playing at a place like ChuckECheese these days.Do you have pictures to share?

Martha said...

Hi,

You don't know me. Josh Hale said I should read your blog. I did. He thinks that we should have some kind of support group for people who the doctors have no idea what the hell is wrong with them. I'd be a founding member.

I started by blog when I was pregnant and throwing up all the freaking time. I also had migraines 3-4 days a week. I'm of the opinion there is nothing worse (not even labor) than a migraine. I'm so sorry you're having to deal with them. I have some tips that helped me if you're interested. It's like chipping away at an iceberg of pain...but you know sometimes it helps.

My doctor just called today to tell me he thinks he should refer me to the Mayo Clinic. I've had this fever for 2 1/2 months that won't go away. Plus a bunch of other lovely symptoms.

I find that everyone gets tired of hearing about it. But I blog and whine anyway. I got a call today of someone offering their services in casting demons out of me.

I didn't realize that you live in town. If you want to compare notes or share a ride to Rochester or just have a conversation with someone who doesn't think you're crazy...I'm around.

Hope I didn't just freak you out...my social skills have been somewhat lacking lately.

Kritter Krit said...

Hey Martha,

Josh has told me a little about you as well. Sorry you haven't found any answers either. The Mayo Clinic has been tossed around in recent discussions with my doctors as well. Woo hoo! Doesn't that sound like fun?? Ugh.

I tried to comment on your site, but for whatever reason, it wouldn't let me. Feel free to get my email from Josh. I would be nice to commiserate with someone who's going through the same frustrating thing.

Hope to talk to you soon. (I promise to be perkier in conversation than this comment is coming across. Hee.)

The Horvath's said...

Kristy,

I hope you are feeling better! I can't imagine the frustration of all the doctor's appointments and no definitive answers. I do have a friend that has Fibro. and Chronic Fat. Syn (ok, I think that is so funny that I just abbreviated Fatigue with Fat. on accident. Hopefully my friend will never read this blog and think I called her fat...I am laughing out loud right now. I am pretty sure I have Chronic Fat. Syn....) But I do know that her symptoms have lessened with changes to her diet. I will stop rambling now. Sending good thoughts your way!

Anonymous said...

Come out, Come out, Wherever you are?
We are WAITING on a post.

Love, Aunt Becky

Anonymous said...

it's been almost a month....hope all is well.

Anonymous said...

happy anniversary guys. hope you have a good one!
love you,
walt

sarah p said...

I keep checking in to see if you've written. You're starting to worry me...post something so we know you're ok! Praying for you!

love you lots.

Anonymous said...

Checking EVERYDAY and still NOTHING!!!!!
OK, we're hooked and need a fix!

Love,
Aunt Becky

Brett said...

Hey--hope you're alright. Geez, you got me, my girlfriend, my parents . . . well, we're all thinking about you. Tell Sophie that her #1 NC uncle says "hello." And let me know how you are . . .

Anonymous said...

How about just aan I am okay or not okay more later post...even us strangers are stating to get worried....

Kristie said...

Kristy, still praying for you and missing you here in blogland.

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