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...
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
Tuesday, October 29, 2013
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"......
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.
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 ???? |
One day...I still have dreams of making a Wheaties box, minus Béla Károlyi...and the leotards.
Thursday, August 8, 2013
The hip hip a hop, and you don't stop...
I always put off these posts. Why? Not because I DON'T want to write them, but because I DO want to write them. Make sense? Ya, I know - me neither.
I try and come up with these really cool, witty and smart tag lines. Take this one for example. I wanted to give an update on my hip. But what the hell would I call this post?? I already used the ever cool "hipster" and the Khia song from he debut album, Thug Misses, "My Neck, My Back" - what else is left in this world?!?!?!?
So I turn to google.
Creative? Nah. Google it mo fo's! So I type in "hip" and sure enough - google saves me - how could I have forgotten about Rappers Delight Lyrics??? HIP HOP HIPPITY HOP! DUHHHHH.
Ok, so in an effort to try and assuage some of my anxiety that every post need be awesome, stellar, perfect, original, informative yet humorous, thoughtful and compelling...this ain't Oprah's Book Club Kate. ok ok ok. Here it is, without further b.s - or adieu, the 6 week update.
Drum Roll...........
6 WEEK Thoughts...(mostly rambling)
- From 2 crutches to 1 to NONE
- Driving automatic, 2 foot style - eekkkkk!
- If you are gonna use 2 feet, might as well go back to 3 pedals - zoom, zoom back to stick shift!!
- Sutures FINALLY fall out
- Still no actual strengthening work
- Leg severely atrophied does not look cute in shorts, wear pants or mumu
- You can paint your toenails! Screw that, go get a pedicure you deserve it! (HOT Pink!)
- You can run errands
- You can stop having people asking, "What did you do to your knee?" (I know, this makes no sense to me either)
- You can get blitzed - ok, a little now that you are not a hazard on crutches
- You can stop watching Toddlers & Tieras and Honey Boo Boo marathons
- You can shave your legs - needs no explanation
- You can stop playing the part of Boo Radley from TKAMB and go out and get some sun on your pasty self
- You are FREE.....ok, you are not free. No running, no skipping, no hopping (definitely no hip-hopping) no running, no "the splits", did I mention that you are FREEEEEE
- Physical Therapy only 1x a week and in the pool (since thats where you are doing most of your Boo Radley detoxification anyway)
- You can start writing your blog?!?!?
I try and come up with these really cool, witty and smart tag lines. Take this one for example. I wanted to give an update on my hip. But what the hell would I call this post?? I already used the ever cool "hipster" and the Khia song from he debut album, Thug Misses, "My Neck, My Back" - what else is left in this world?!?!?!?
So I turn to google.
Creative? Nah. Google it mo fo's! So I type in "hip" and sure enough - google saves me - how could I have forgotten about Rappers Delight Lyrics??? HIP HOP HIPPITY HOP! DUHHHHH.
Ok, so in an effort to try and assuage some of my anxiety that every post need be awesome, stellar, perfect, original, informative yet humorous, thoughtful and compelling...this ain't Oprah's Book Club Kate. ok ok ok. Here it is, without further b.s - or adieu, the 6 week update.
Drum Roll...........
6 WEEK Thoughts...(mostly rambling)
- From 2 crutches to 1 to NONE
- Driving automatic, 2 foot style - eekkkkk!
- If you are gonna use 2 feet, might as well go back to 3 pedals - zoom, zoom back to stick shift!!
- Sutures FINALLY fall out
- Still no actual strengthening work
- Leg severely atrophied does not look cute in shorts, wear pants or mumu
- You can paint your toenails! Screw that, go get a pedicure you deserve it! (HOT Pink!)
- You can run errands
- You can stop having people asking, "What did you do to your knee?" (I know, this makes no sense to me either)
- You can get blitzed - ok, a little now that you are not a hazard on crutches
- You can stop watching Toddlers & Tieras and Honey Boo Boo marathons
- You can shave your legs - needs no explanation
- You can stop playing the part of Boo Radley from TKAMB and go out and get some sun on your pasty self
- You are FREE.....ok, you are not free. No running, no skipping, no hopping (definitely no hip-hopping) no running, no "the splits", did I mention that you are FREEEEEE
- Physical Therapy only 1x a week and in the pool (since thats where you are doing most of your Boo Radley detoxification anyway)
- You can start writing your blog?!?!?
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.
2 Week Post - Op Thoughts:
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 |
- 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....
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"
Thursday, June 13, 2013
Holey Mole-y!
So back when I could compartmentalize my vast amount of medical issues...wait, no that never happened. Lets try using the old calendar, back in January, my Oncologist said he wanted my itty bitty freckle on my lip removed. Here, I always thought it was cute. Well, after already having Melanoma, getting it again would not be cute, not at all. I said ok and put it on my to do list.
I decided to see a plastic surgeon, who I call Guy Smiley, because let's face it - with the Bells' Palsy, my face was already a hot busted mess. My surgeon told my how wonderfully symmetric and beautiful my face was, you know - minus the paralyzed eye and drooping lip. If anyone knows perfection, it's this guy - I was feeling pretty good up until he said he was going to "punch" out my freckle and stich me up. Wait, no glue? No steri strip? No band-aide? Oh snap.
So in April, I went "under the...hole punch?" He injected my lip and apologized all the while, it was agonizing - As I left with what appeared to be a bad filler job and some blue stitches - non desolving of course, you know - to add to the inconvenience. I came home, the numbing medication wore off and poof - I look like Shrek...
I decided to see a plastic surgeon, who I call Guy Smiley, because let's face it - with the Bells' Palsy, my face was already a hot busted mess. My surgeon told my how wonderfully symmetric and beautiful my face was, you know - minus the paralyzed eye and drooping lip. If anyone knows perfection, it's this guy - I was feeling pretty good up until he said he was going to "punch" out my freckle and stich me up. Wait, no glue? No steri strip? No band-aide? Oh snap.
So in April, I went "under the...hole punch?" He injected my lip and apologized all the while, it was agonizing - As I left with what appeared to be a bad filler job and some blue stitches - non desolving of course, you know - to add to the inconvenience. I came home, the numbing medication wore off and poof - I look like Shrek...
I return a week later to get the hideous stitches removed and be on my merry way. Errrrrrr, nope. Guy Smiley had other plans. Upon inspection of the pathology report he stated he was "afraid of my genetics" and it needed re-excision. Great. More stitches - come on man, things were just starting to turn around in the face department! He also tells me to get the once over by his broski Dermatologist friend - you know, JIC there were any more "suspicious" freckles. So off I go, stich-less and hope-less.
I meet with Creepy Dermatology Broski two weeks later. Upon entering the room, he ALSO proceeds to tell me how distinguished and coveted my cheek bones, lips and jaw line are, "A lot of women pay me a lot of money to look like you" I wanted to ask if that included the Bells Palsy, or he just threw that in as a freebie? He then talked to me about his love of redheads as he scanned all 3.4 million of my freckles. After the "full body scan" I had but 1 questionable freckle on the back of my thigh, which with a little lidocaine and a scrape - was biopsied. He slapped on a band-aide, told me if I needed anything he was my "personal Dermatologist and I could get in to see him...anytime." He said the results would be back in a week but no news was good news.
A week later, my phone rings. Creepy Dermatologist calling! Your pathology came back and you have a dysplastic nevus that looks to be pre-cancerous. Gulp. Pause.Throw-up-in-my-mouth-a-little. We want to rule out melanoma so we need to re-excise the lesion and see if we can get clean margins. How does that sound?
Pause. Are you fucking KIDDING ME. Listen man, It's been a HELL of a year, to be honest - that sounds like BULLSHIT. But I refrained. Sounds...great Bro.
I elected to have Guy Smiley give me a two-fer and redo the lip and throw in the thigh while he was scraping and sticking me. Thanks Doc. I schedule my double procedure for May 31st - keeping in mind I would once again have the bad-Kardashian-look for a few days. The day arrives, I am sitting anxiously awaiting the onslaught of injections to numb me up and swell me out. Guy comes in, takes one look at me and says, "What the hell is going on here" pointing to the dreaded Holter Monitor. I explain, he gives me the squint face and long pause. "What, what, WHAT?" I practically yell. Guy responds in typical Guy Smiley fashion, " You are going to hate me but..." Me - Please don't say I have to reschedule, I don't want to come back! At this point I am on the verge of crying or cursing. For Smiley's sake - I hold it together. He reschedules me 2 weeks later, at the convient hour of 7:30am.
This morning I arrive - ready for action! Guy comes in, apologies profusely as he stabs me a total of 13 times in the leg and lip to numb me up. Ding, ding, ding - removal of Kate's potentially cancerous skin lesions - Take 3!
It's all over in 20 minutes. Guy talks about a tattoo artist he works with doing breast reconstructions who tattoos on aerolas as he sews up my lip. My face is covered in beta-dine and a plastic sheet. I can only imagine what tattooing an aerola is like - as I try and distract myself from the horror I would face if I were to look in a mirror right now. Yikes! I schedule my stich removal for next Friday. Hopefully, Guy is all Smiles next time I see him. Until then...Shrek Take 2 *Warning: Pictures are NOT CUTE*
Pump it up...
Kardashian-esque-Pale-Pucker
The two-fer...I'm a bargin shopper - always
Monday, June 10, 2013
Let the fast begin!
Never have I ever been more un-excited, un-thrilled (yes, these are made up words) and unfilled (this last one is real - and true). For the 3rd time this year I will go "down under" not in the Kangaroo, great barrier reef, and outback way. I will take a glorious Propofol induced siesta as my Gastroentrologist tries to "get to the bottom of things"...literally. Colonoscopy here I come! Wu-hoooooo
Let me count the ways in which I am enjoying my fast...oh wait, zero. It is only 10 am and despite eating left over gluten free pancakes at 11pm - I am starving. I have 30 hours to go until I can scarf down anything that does not go through a straw. A popsicle is not solid food - STOP the lies! Jello doesn't count when you have to eat the green flavor! Ok, ok deep breaths.
Top Ten Prep Steps:
1. Do NOT watch Food Network
2. Do not go to the grocery store
3.Lay on couch and pretend not to think about food
4.Drink gatorade and veggie broth, and BULLSHIT popsicles
5. Avoid the kitchen like the plague
6.Crochet - except I crochet miniature food, last night I was working on a doughnut, scratch that plan.
7.Forbid the use, by all family members, of the downstairs bathroom
8.Stock said bathroom with various entertainment: ipod loaded with Enya, magazines, a nice candle
9.Avoid Facebook, Twitter and Instagram - food porn is rampent and no good for your fragile state
10.When you are done, start over at #1
Congrats Kate!!! - you have survived hour 1 of 30. Just keep swimming...
Let me count the ways in which I am enjoying my fast...oh wait, zero. It is only 10 am and despite eating left over gluten free pancakes at 11pm - I am starving. I have 30 hours to go until I can scarf down anything that does not go through a straw. A popsicle is not solid food - STOP the lies! Jello doesn't count when you have to eat the green flavor! Ok, ok deep breaths.
Top Ten Prep Steps:
1. Do NOT watch Food Network
2. Do not go to the grocery store
3.Lay on couch and pretend not to think about food
4.Drink gatorade and veggie broth, and BULLSHIT popsicles
5. Avoid the kitchen like the plague
6.Crochet - except I crochet miniature food, last night I was working on a doughnut, scratch that plan.
7.Forbid the use, by all family members, of the downstairs bathroom
8.Stock said bathroom with various entertainment: ipod loaded with Enya, magazines, a nice candle
9.Avoid Facebook, Twitter and Instagram - food porn is rampent and no good for your fragile state
10.When you are done, start over at #1
Congrats Kate!!! - you have survived hour 1 of 30. Just keep swimming...
Thursday, May 23, 2013
Holter Monitor Happy Hour
So I go to my Cardiologist for the 3rd time this month, I found out they have a frequent flyers club. I'm not sure this is a club I want to belong to....
They "conveniently" schedule to put on your Holter (Heart) monitor at 4pm, the very start of Happy Hour. I'm not sure if this is meant to be a cruel joke...at 4pm on the nose I get "hooked up". For the next two weeks I will have the pleasure of wearing a brick with wires on my hip. Don't worry, they gave me a fanny pack, you know - to camouflage it. Thanks guys, I appreciate the 1989 throwback!
It's bluetooth. It works over cell towers. It is STILL a brick.
When having an "event" there is a button, labeled "event" that you are supposed to press...really guys?
Could I have had this during the winter where comfty wool sweaters do one better than the fanny pack? No. I can have it on Memorial Day weekend - I can get burn lines in the shape of small circles where the leads attach. It's like a cruel knock off of those little stickers you could put on while tanning - because a little tan heart is wayyyyyy cuter than sunscreen.
I'm totes looking forward to this weekend.
They "conveniently" schedule to put on your Holter (Heart) monitor at 4pm, the very start of Happy Hour. I'm not sure if this is meant to be a cruel joke...at 4pm on the nose I get "hooked up". For the next two weeks I will have the pleasure of wearing a brick with wires on my hip. Don't worry, they gave me a fanny pack, you know - to camouflage it. Thanks guys, I appreciate the 1989 throwback!
It's bluetooth. It works over cell towers. It is STILL a brick.
When having an "event" there is a button, labeled "event" that you are supposed to press...really guys?
Could I have had this during the winter where comfty wool sweaters do one better than the fanny pack? No. I can have it on Memorial Day weekend - I can get burn lines in the shape of small circles where the leads attach. It's like a cruel knock off of those little stickers you could put on while tanning - because a little tan heart is wayyyyyy cuter than sunscreen.
I'm totes looking forward to this weekend.
Thursday, May 16, 2013
Real life Elastigirl
The floodgates I mentioned earlier? They opened on April 8th, 2013, and we were in no way ready for what they unleashed on us...In my many failures at this thing called acceptance, I've decided I can't keep ignoring the Zebra in the room.
So buckle up, hold onto your hats, the show is about to start. And it goes a little something like this...
Dr. You are overly flexible and hypermobile, did you know that? In all of your joints.
Me: But I can't do a split?!?! [confused]
Dr. There is NO such thing as double jointed, that thing you do with your fingers is actually called a swan neck deformity.
Me: Deformed?
Dr. The way your hands splay out like that, is actually called the flying bird sign.
Me: What is this, birds, swans?
Dr. Can you touch your thumb to your forarm? There is no name for that one, sorry.
Me: Yes???
So begins the fall down the rabbit hole. All of these strange "nothings" I had had my entire life, suddenly became big somethings.
Dr. - You have Ehlers - Danlos Sndryome
- It is a genetic condition, you have had this your entire life
- It is a connective tissue disorder, your body makes defective collagen
- The "glue" that holds your body together does not work
- You have all of these orthopedic injuries, not because you did anything, it's what your body didn't do
- Connective tissue is everywhere - skin, muscles, ligaments - so in addition to all your joint problems, it affects the valves in your heart, your eyes, your skin, your teeth - and did I mention every single one of your joints?
- The TMJ you have? It's from EDS. The condromalcia and fat pad impingement in your kneee? EDS again! The herniated disc and degenerative disc disease in your spine? EDS. That heart murmur? It's from EDS too, but actually you have Mitral Valve Prolapse. Your "hip popping?" That is also EDS, and it's less popping and more subluxating [ fancy word for partial dislocation].
- Your skin is thin, fragile and bruises easily, a lot like white tissue paper
- Your skin is thin, fragile and bruises easily, a lot like white tissue paper
- It is passed on in a autosomal dominent manner, which means you are not a carrier, and only you need to have the (defective) gene to pass it on. All of your children have a 50% chance of having EDS. Have you thought about having kids yet?
- Did I forgot to mention, there is no cure...
My head is spinning, the tears are running, thoughts are racing, anger is mounting...FINALLY we know. Finally, the question marks start to disappear. Cancer, Check. Lyme Disease, Check. Weird Genetic Disorder, Check. The trifecta of strange, awful and bad luck is finally complete.
The Dr writes out the geneticist, cardiologist, dermatologist and opthamologist who "can help me." Was I surprised? Well yes, a genetic connective tissue disorder, at 29? I would have been LESS surprised to hear he BIG "C" again. But here we are. And here I am: The real life Elastigirl, I'm still waiting for the awesome costume and cape. Maybe being a super hero isn't all bad....
Until next time....
If you want to learn MORE about Ehlers- Danlos: http://www.ednf.org/
Tuesday, May 14, 2013
A random alphabetical sampling : Doctor Style
Letters A - E
Instead of writing another bitch fest about all the Doctors I have seen – I decided to do us all a favor and just make a nice and neat little list. Please feel free to use while teaching your little ones their ABC’s, because of course A for Ass-hat is far more interesting than apple.
A – “Ass-hat” the doctor that spends 3 minutes and 28 seconds with you and tells you “it might just be …..(insert random catch all DX here, depression, fibromyalgia) and sends you to pay your $50 co-pay while your head is still spinning from the fact that this person went to medical school AND has a license to practice. The ass hat: totally and utterly useless.
B –“Bitch” the doctor who believes that her bright pink Dansko clogs are so “cute” and when you list your symptoms, you are unsure if she is listening or thinking about her need for a pedicure before her vacation in St. Barts.
C – “Cardiologist” Dr. Love. I mean what can I say here? “Lay flat, open your shirt and ignore my cold hands …”
D – “Dentist” I love my dentist, he is like the Santa Clause of teeth. Rosy cheeks, a round tummy I often hear gurgling as Mr. Thirsty takes care of my drool. Now that I will be seeing him for cleanings 4 times a year, I’m glad we both understand that under NO circumstances can I have a “busted grill” – aint no way.
"Dermatologist" The guy that gives you thumbs up or thumbs down on your SPF application technique. Freckles stop looking like spots and start looking like question marks. This one ok? This one look different? This one might look 'suspicious'? Do yourself a favor, listen to Baz Luhrmann..."If I could offer you only one tip for the future, sunscreen would be it."
E – “Eeyore” This is the Dr upon walking into the room, you wonder if he is the patient? He looks more sad than whatever brought you to his office. You suddenly check for the trademark tail nailed (or more appropriately, sutured) to his white lab coat. He talks like Ben Stein and you try and cheer him up. You leave wondering if you should charge him for a consult.
Until next time…..
Instead of writing another bitch fest about all the Doctors I have seen – I decided to do us all a favor and just make a nice and neat little list. Please feel free to use while teaching your little ones their ABC’s, because of course A for Ass-hat is far more interesting than apple.
A – “Ass-hat” the doctor that spends 3 minutes and 28 seconds with you and tells you “it might just be …..(insert random catch all DX here, depression, fibromyalgia) and sends you to pay your $50 co-pay while your head is still spinning from the fact that this person went to medical school AND has a license to practice. The ass hat: totally and utterly useless.
B –“Bitch” the doctor who believes that her bright pink Dansko clogs are so “cute” and when you list your symptoms, you are unsure if she is listening or thinking about her need for a pedicure before her vacation in St. Barts.
C – “Cardiologist” Dr. Love. I mean what can I say here? “Lay flat, open your shirt and ignore my cold hands …”
D – “Dentist” I love my dentist, he is like the Santa Clause of teeth. Rosy cheeks, a round tummy I often hear gurgling as Mr. Thirsty takes care of my drool. Now that I will be seeing him for cleanings 4 times a year, I’m glad we both understand that under NO circumstances can I have a “busted grill” – aint no way.
"Dermatologist" The guy that gives you thumbs up or thumbs down on your SPF application technique. Freckles stop looking like spots and start looking like question marks. This one ok? This one look different? This one might look 'suspicious'? Do yourself a favor, listen to Baz Luhrmann..."If I could offer you only one tip for the future, sunscreen would be it."
E – “Eeyore” This is the Dr upon walking into the room, you wonder if he is the patient? He looks more sad than whatever brought you to his office. You suddenly check for the trademark tail nailed (or more appropriately, sutured) to his white lab coat. He talks like Ben Stein and you try and cheer him up. You leave wondering if you should charge him for a consult.
Until next time…..
A change of venue....
I suppose I should have done this a few weeks ago - but surprise, surprise, I can almost ALWAYS find something more important to do when I need to be doing something important. Make sense? Ya, me neither. In any event here I am.
My last update/blog/help page's format....well just plain sucked. I hated the way it denied my use of spaces and the return key and made it one big block of unsightly text. YUCK. As an English major - I just can't be havin' NONE of that. So again, here we are. "Living and Lyming" has morphed into more of, "Leaving Lyme Behind" if you will. However when one door closes, a window - more like a floodgate opens somewhere else. My Medical Mystery tour is still going from doctor to doctor, city to city - with little end in sight - look for tour dates. I figured I would share my experiences - for better, for worse...and all thats in-between.
Enjoy, sit back, and enjoy the psychedelic, sometimes tragic, mostly a pain-in-the-ass, strange, weird and sometimes scary.....Medical Mystery Tour
Enjoy the (shit) show......
My last update/blog/help page's format....well just plain sucked. I hated the way it denied my use of spaces and the return key and made it one big block of unsightly text. YUCK. As an English major - I just can't be havin' NONE of that. So again, here we are. "Living and Lyming" has morphed into more of, "Leaving Lyme Behind" if you will. However when one door closes, a window - more like a floodgate opens somewhere else. My Medical Mystery tour is still going from doctor to doctor, city to city - with little end in sight - look for tour dates. I figured I would share my experiences - for better, for worse...and all thats in-between.
Enjoy, sit back, and enjoy the psychedelic, sometimes tragic, mostly a pain-in-the-ass, strange, weird and sometimes scary.....Medical Mystery Tour
Enjoy the (shit) show......
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