Thought of the day...

" I want you to know that I am both happy and sad and i'm still trying to figure out how that could be" - stephen chbosky
Showing posts with label Ehlers -Danlos Syndrome Problems. Show all posts
Showing posts with label Ehlers -Danlos Syndrome Problems. Show all posts

Wednesday, February 26, 2014

When life gives you stones...throw them back!

My resolution for 2014 was to write more. In fact, it was to basically do more...of everything. Clearly I need to make a resolution about my resolutions. So, without further adieu lets get back to the sickness, the sadness, the suckness...I know you were all waiting in suspense!

I had a nice break, or rather boycott, from all things medical for a while. I was recovering from shoulder surgery (yes, I have yet to blog about that shit show, perhaps by May?). I was attending physical therapy regularly - lie. I went up to and on New Year's Eve, which I like to think of as "Deductible Eve," the day before the evil insurance deductible returns in full force like an angry lion - RAWR! 

In the middle of the medical mountain of debt, I decided I was going to avoid anything and everything that required the use of my deductible for as long as I could. After physical therapy I had another deductible eve medical appointment to take care of and then I would be FREE...or just living in a constant state of denial.  I went to have my annual cancer check, this included the standard blood work, 19th (yes, 19) chest x-ray and an abdominal ultrasound.

The abdominal ultrasound soon became what I like to call "The Abominable Ultrasound." Lets take a short stroll down memory lane, shall we? Last year, "Good news - no cancer! Bad news - you have gallstones and we are going to have to confiscate your gallbladder, how's Tuesday sound?" So naturally, this year I was hoping for more good news and less bad news. JUST KIDDING!

Now to the title of this post...

This year, "Good news - no cancer! Bad news - you have a very large kidney STONE. More bad news - we are probably going to have to blast it out of there. Bad bad news - it will require a hospital gown  anesthesia and a hair net."

Pause. Are you in shock? Because I am. I kicked myself in the proverbial ass for all those, "Life is really giving me the stones!" jokes I made last year. Life was legit giving me the stones, every freaking single kind it could. I just want to know...in what world does this happen? I am STILL scratching my head and kicking my ass. And I still have no answers. Bad luck? Bad karma? A case of the "bad's"? 

I head tomorrow for my 4th CT scan in a year. Let me stop here and point out that each CT scan carries with it the same radiation exposure that a "normal" person experiences just walking around on planet earth every 3 years of their life. So I think if my math is correct, and it rarely ever is, that means I might start growing a third eye and sprouting a tail. I will be sure to blog in the unlikely event that this should occur. Stay tuned!

Seriously, Life - you screwed the pooch on this one - you were SUPPOSED to throw me a bone, not a stone. Actually if you could just stop throwing shit at me that would be great. Thanks - love Kate. Xo.

Ps. Life - if you are going to continue hurling things my way, feel free to chuck the green papery kind, preferably the Ben Franklin variety - but I am a beggar not a chooser so I will also gladly accept the George Washington kind.



Tuesday, October 29, 2013

Dental Doomsday

I "SHOULD" start doing things in order, more consistently, on time....wait, that would mean I had my shit together, which I clearly do not.

So much has happened that I have a retroactive list of things I need to blog about. Can you do that? Well kids, it's happening. I will start with the most recent, and most ridiculous.

Because of Ehlers- Danlos (MOFO) I need to have my teeth cleaned 4x a year. Yes, 4. All the water pik's, super floss, scope, flex-brush, dental dams will not save me. And like I have said before, I can't have a busted grill.

After sitting with the Orthodontist last week for an hour, here was the takeaway:

1. Are you under any stress? - No sir, none at all.
2. Try knitting or reading the Bible before you go to bed, it will help you sleep. If that doesn't work, take some narcotics.
3. Also - watching the history of Egypt is also good for snoozing.
4. I recommend two "splints" (two huge custom mouth guards) to be worn all day. Yes, you may speak with a bit of a lisp, but you will learn how to minimize it.
5. These splints are not covered by insurance.
6. For both, we can cut you a break, $2015, no payment plan.
7. Did I mention these are not covered by insurance?

Final thought, and I quote: "After reading your medical history - I have say - you must be REALLY angry at God"

And that is when I left. I cried in the stairwell for a good 5 minutes. Then I called Matt and cried some more. Then I came home and had a beer and started grinding my teeth because of the stress.


Next week will be better....no it won't stupid - glass half EMPTY bitch! (My inner voice yells this in Tourette - like tics from time to time - I try and tell that voice to STFU)

This week I call my Dentist, the one with the rumbly tummy? I say - hey man, it's been rough, my insurance won't cover ANY of my dental stuff and I just need a cleaning ( the one, the ONLY thing my insurance seems to cover me for) can you help a sista' out?

"Kate, I see you have an appointment on Friday, I don't think that is such a good idea"

And this is where Dental Doomsday continued. "Because of your "syndrome" I just don't feel comfortable - its really in your best interest."  Um, Doc - I just want my teethers cleaned!  "Go to a periodontist - they can help you" Um, I did and my insurance does not cover it Bro, and $165 - I just aint' got that kind of cash. (Ok so I didn't really get all ghetto on him, but it sounds better than trying to effectively convey my "on-the-verge-of-tears" voice.)

"I wish I could help, but I am but a small family Dentist and with your "syndrome" (interchangeable with cooties) you are just far to COMPLEX for me. Maybe try U Penn.

So, the final takeaway?

-Dental Doomsday rages on...and on....and on....

-U Penn for a dental cleaning? I might just get some scope, a safety pin, rubber gloves and some bubble gum toothpaste and call it a day.

- Dental insurance is not a real thing, its like a unicorn - they make you believe it exists, until you actually need one - like "Hey I need to ride into the enchanted forest and rescue the forrest animals, where the HELL is my unicorn??"

-Plastic hardware + lisp + broke ass from paying for hardware = a very bad time.

Did I mention that last week Aidan went to the dentist and has 4 cavities, one needs a crown and possible extraction? No, I will save that gem for another day.

Remember to floss kiddies...


Monday, August 26, 2013

Blood Bank Blues

To give or not to give...that was the question...

 Aidan and I were a the Y for my weekly post-op workout. I noticed a sign for a blood drive. PERFECT! Here is something I can do to feel "good" about myself, and you know, give back to all my peeps.

I fill out some paperwork. Get my sticker and am cleared for take off...well, not exactly. Let's stop here and assess my not-thinking-this-one-through.  This blog, just being the author of something containing the words "medical" and "mystery" should have been a HUGE red flag to send me running, ok let's not lie - walking/limping to the hills. Nope. Not this determined dumb ass. The nurse checks my vitals, I passed all the "You can't give blood if....." questions, which was either a miracle or HUGE oversight. I'm still on the fence.

Aidan hangs out at the after-blood-donation snack area and chats up a new friend while eating Utz pretzels.  Then, dun dun - dun dun...it's like shark week but scarier - it was time for the dreaded iron stick. The nurse informs me 12.5 was the "magical number" and I said, well what about an 11.8? No bueno said she.

I send all my super duper iron rich blood to the tip of my middle finger (it should be used to this by now - I do it so frequently) small stick and wait. It felt like the wait of a pregnancy pee test, only no red lines,  and not near the fan fare. Um......

I get the thumbs down. But first, she calls over another nurse, take a look at this she says. I thought - damn yo, I was just working out I know I look bad but give a girl a break. No, they did not care about me and my sweat stains, just my sad iron score.  I felt like I was in the olympics and just totally fucked the final vault. Even Kerri Strug got a second try...and a Wheaties Box.

I failed. Plain and simple. But you know when I do anything, I have to do it big - EPIC FAIL.
 12.5 - hell I would have taken a 5.5....see below for the sadness and the shockness that bestowed my nice nurse. "Maybe next time"......


Seriously, 0.0 ????

And so Aidan left with his free snacks and our Dunkin' Doughnut coupon - free doughnut and iced coffee for your blood, I mean troubles. My head hung in shame.  I shrugged my shoulders at the woman at the check in and said "denied" she looked like she understood, probably why she was working the booth.


One day...I still have dreams of making a Wheaties box, minus Béla Károlyi...and the leotards. 



Thursday, July 18, 2013

Hip Surgery...now I'm a real hipster!

So the date was set June 28th. I was to have my "deformity" un-deformed. First case of the day which meant 5:30 am call time...and we live 1.5 hours away. Do I go to sleep or just keep watching the Law and Order marathon? Tough call.

Off we went, my last time on two legs for 6 weeks.



My uniform. These hairnets and socks never stop looking...well, blue and butt ugly. I think a serious revamping in hospital fashion is in order. At least my feet will be warm in toasty while I'm in traction.

I get my nerve block in my hip, to help with the pain after, however it did not take as soon as they were hoping. I had some down time so I grabbed the binder with my name on it and thumbed through my chart. I came across a note from Dr. Love (cardiologist) clearing me for surgery, in his letter he referred to me as "educated and lovely patient who was a pleasure to treat" - I was feeling the love. Then they took away my binder. Boo. They wheeled me in and all of a sudden images of Sigourney Weaver in Aliens came to mind....whole new meaning to "getting on the table.

AHHHHHHH!!!! Traction Table
Mind you, they did not give me the sweet orange unitard. I thought this only happened once a year at the OBGYN...nope. My leg still was not numb so I put my own legs in the boot, they put the oxygen mask over my face and counted backwards from 10, I remember 8 then I awoke in recovery with my nurse, Mim.

Matt came in. Nerve block still not working so pain, lots of pain. Mim came to the rescue with some morphine and then performed a bedside Reiki treatment. Yes folks, this happened. Mim, the wonderful of the West and East. Lucky me...like I said, i'm always one for a bargain. I hung in recovery for a few hours and was moved to my recovery suite (don't be fooled, you only get to stay here once the juice wears off). Nerve block - finally working!!!!! - I think it was the magic of Mim. 

Matt and I had time to snap this for the family photo album


We left at 4am and got home just 12 hours later. For 6-8 hours a day, I would be strapped to yet another bionic looking machine. You know when you get the cart at the grocery store with the jacked up wheel? That was my version of the CPM machine for my leg. The sales rep got into an accident on his way to delivering it a mile from my house, I think they forgot to total the machine along with the car. poor guy had to come out on Saturday to replace it. They put the fuzzy fake sheepskin on it to entice you to use it, like "oh hey, that might be comfy - so comfy I could sleep in it!" LIES!


CPM Machine + Ice + Pink Pj Pants
2  Week Post - Op Thoughts:

- Crutches suck...hard. Cup Holder?

- Modesty goes out the window - you need help with EVERYTHING

- If you have any responsibilities at all, you can't do them so stop trying

- Yes, you need to have someone pick up your leg for you for a month

- If you drop something on the floor, fuck it - you can't bend over

- Shaving your legs? Get a friend with a steady hand whom you trust...a lot

- Leave a light on when you are crutching to the bathroom. in the dark.

- Close your eye- poof! - you are an infant trapped in an adult body - completely dependent for your basic needs.

- You are not alone. Lady Gaga and A-Rod had the same surgery. World Tours and World Series -      think of the things YOU will be able to do!

- Your arms are gonna be buff, look out Michelle Obama

- Netflix instant queue - I will dominate you!

 

Monday, July 8, 2013

My neck, my back...my HIP?

After years of ignoring, dismissing and resenting my knee I decided I owed our relationship more than just the brush off. I was in it, we needed to "heal" and get back to doing what we both loved: running. But we needed outside help - this was well beyond us "working it out ourselves." Knee and I went to see  Dr. Bones to see what could be done.

At the appointment I move my leg this way and that, up and down and all around. Bones looks at me and says, it's not your knee, it's your hip! All these years I had been blaming Knee! It wasn't knee - it was me (and my raging stupidity). He wanted me to have an arthogram done to further asses the damage.

Matt and I drove back 2 weeks later, I had a nice long needle with dye injected right into my hip joint under x-ray guidance - ouch! And then I was wheeled over to MRI. I get placed in the tube, the whirling of the machine begins and then I hear the tech in my headphones interrupting my Taylor Swift moment to say he needs to readjust me. He pulls me out of the tube, I scootch down, then up and then down some more. He loads me back in. This time Michael Jackson is playing! It is my moment! Then...errrp...the tech, again - he needs to readjust me, again. He pulls me back out, I scootch up, down, a litle more up, a little to the left. All the while I am missing my MJ moment in the MRI tube ( it was on my bucket list!) Finally, back in I go. MJ is over and Bieber is on. I sigh. The whirling starts..then errrpp....."Are you wearing a belly button ring? - Yaaaaaaa, I am gonna need to pull you out...again."

Two hours later, Matt drooling in the waiting room - we get our complementary CD and bounced. A week later, we head back to see Bones.

He pulls up the MRI and says:
You have a labral tear and FAI -femoral acetabular impingement - in your hip joint.  You have a mixed impingement type. In laymen-kate speak : the top part of your femur is deformed, it looks like a cam shaft while your socket pinches any soft tissue that might be dangling around. Your femur rubs abnormally in the socket and impinges the pinches labrum (soft squishy part of hip socket) resulting in a tear.



Um ok, so that means.....

That means you have premature hip ostoarthritis. You know, what old people get and need a fake hip.

Shit. And that means?

That means we need to do hip preservation surgery to try and put off a total hip replacement. But don't worry - I am a man with a plan!

Deformed, impinged, torn - is there any nice adjectives used to describe me today?
Matt says, "How about spritely?"

Plan: Arthoscopic surgery to perform periacetabular osteotomie(kate-speak: bone cutting and shaving to rid me of aforementioned deformity) and repair torn labrum with sutures and plastic anchors (kind of like what you used to hang up that a naked picture of your first born in the hallway. Crutches for 6 weeks, no driving for 6 weeks, no life - I mean no fun - I mean recovery for the whole summer, use a continuous passive motion machine (aka sit on floor with leg in fuzzy sheep cloth witha machine raises and lowers your leg) - for 6-8 hours a day - for 3 weeks, PT 3x a week for 2 months, and 6 months until you are back to full activity.

Thoughts: Running, you seem so close yet so far. Knee, I'm sorry about that misunderstanding, it truly was not knee it was me...Bones interrupts my processing and says, " I think you have the same thing going on in your left hip - just something to keep in mind as we move forward.....

Final Thought:  LIFE, whenever you want to get around to tossing, throwing or hurling that bone at me, I'm ready....




Here it is, like Shakira always said, "My hips don't lie"