Halloween Hates Me

It's official, Halloween hates me! In 6th grade I was sick leading up to it, but was feeling better two days before. My doctor warned me to be careful, I of course didn't listen, and I ended up back on steroids and antibiotics three days after Halloween. Then we get to 7th grade (last year) where I spent Halloween (and 6 days leading up to it) in the hospital! At least firefighters came to give out bags of fun stuff that were donated by different schools! Some of the nurses dressed up or wore fun scrubs, one nurse actually wore Christmas scrubs which was pretty funny, but still not the ideal way to spend Halloween. Then we get to 8th grade (this year) - laying flat on my back with a spinal fluid leak wasn't the way I planned to spend the holiday. We emailed my doctor what was going on and he responded that I have to stay flat on my back and that Friday is the soonest I'd be able to sit up. After that I have doctor's orders to be a 'couch potato' for a while. I'm the first person to admit how lazy I am, but after weeks of not being able to get out of bed - or if I did get out of bed the furthest I went was downstairs to lay on the couch all day for a change of scenery - I all of the sudden really want to go run a mile! I know as soon as I'm up and able to walk again I'll regret ever thinking that, but being in bed with nothing to do but watch reruns over and over makes me want to go run!
I've definitely been getting better the more I lay flat so that's a good thing. I'm just not happy to have to do it. The neurosurgeon we were originally going to use said that recovery would be easy (walking around a week post surgery, my butt!), but my body seems to be following along the lines of what the neurosurgeon who did my surgery said, "With you all bets are off!". So, sorry Dr. Tye, I know I said I'd try for three months of good health, guess that didn't work out. Between the challenges Brody (my tethered cord buddy) and I have given them, I sure feel bad for the pediatric staff at VCU.
Have a happy Halloween!
All my Love ~ The Sic(k) Chick

Update!

Hey! I haven't really been posting because I thought things were going well....haha yeah as if. I tend to not do things how I'm supposed to do them. For example you aren't supposed to faint three weeks post spine surgery, or fall in the shower (twice) within a few days of fainting, and last but not least you aren't supposed to be getting really bad headaches (that aren't POTS related) every time you sit up. That last one is a symptom of a spinal fluid leak, we're keeping our fingers crossed that I don't have one. But I'm having a lot of the symptoms of one so for now I'm laying flat in bed and drinking caffeine. That's what you do if you have a leak. I don't know if I do have one, but if I do I'm well.... let's just say it'll be a big problem. The way to find out is an MRI, but right now we don't want to have to move me other then when I absolutely have to. My neurosurgeon and his team just got back from a mission trip to Guatemala so they're kind of crazy over there. We're going to call them tomorrow to see if they have any suggestions for what we should do, or if they think it's something else and what we should do for that! Here's to hoping I start feeling better soon and that my weird symptoms all go away soon!

All my Love ~ The Sic(k) Chick

10 things NOT to do after spine surgery (all of which I've done)

10. Bend
9. Lift
8. Twist
7. Sit up straight
6. Sit up straight for long periods of time
5. Go on bumpy car rides
4. Sublux (partially dislocate) your hip
3. Sublux your knee while walking - you can't bend down to put it back in place
2. Sit on the floor - you can't get up by yourself
1. Faint and twist your back when you land on the hard floor......

California Dreamin'

Home! I'm home! The flight was difficult. Free advice: don't take a long bumpy flight after spine surgery and if you do bring your pain meds 'cuz you're gonna need them! When I got home there were some beautiful balloons waiting for me (thanks Ali <3) along with lots of other cards that I have yet to open. As soon as we got back all I wanted to do was eat something that wasn't airport food! Luckily Mom and I are smart enough to get Dad to have dinner waiting for us since the flight was five and a half hours (and was delayed by an hour too) and the drive from LAX back to Newport is an hour.
Right now I'm sitting in my own bed, in my own room. It is an amazing feeling. Dad is the best and got flowers to put in my room, roses of course (my middle name is Rose), tulips, and gardenias. They are all so pretty and smell really good! My room is upstairs and guess what....I made it up the stairs!!! I was clenching my jaw and muttering explicits most of the time going up, but I did it and that's all that counts. I'm getting stronger but I won't be allowed to BLT (bend, lift, twist) for at least 6 weeks, doing squats to get my clothes off the floor is okay though since I was really worried that my parents would have to do that for me :). I have to be careful for at least 3 months with my back. My neurosurgeon said  "Please just give me three months of good health to let your back heal. I'd prefer six, but with you all bets are off!" He knows me too well.

I miss everyone in Virginia and Maryland so much, but I'm glad to be home! I definitely want to go back sometime for a vacation not a 'medical vacation', but an actual vacation. As much fun as partying in the PICU (go to my mom's blog to see pictures) was, maybe next time we come to town we can go to some museums instead. Thanks to the wonderful staff at VCU for taking such good care of me. And a special thanks to Dr. Tye for being willing to take a chance and do this surgery on me, you've changed my life for the better in so many ways.
Now it's time for bed since I have a long day tomorrow!
Lots of Love ~ The Sic(k) Chick

Showers, Shorts, and other things I've missed

Hi! I got out of the hospital on Saturday and am happy to report that I am walking! I was only supposed to be in the hospital for 4 days, but I don't do things how I'm supposed to. I ended up staying in PICU for 7 days and on the general floor for 2. Fun times - not. The good thing is the nurses in PICU are amazing! They all care so much and that makes a huge difference in my care. Surgically I did great, no spinal fluid leaks, noticed the difference of my strength/feeling in my legs pretty much immediately as expected, and my scar is healing up nicely! Sadly my gastroparesis (slowing down of the GI tract - you digest your food in 20min, I digest mine in 160min) decided to be difficult. I was dry heaving and couldn't keep food down, it got to the point they thought about possibly doing PPN (peripheral parenteral nutrition) it's nutrients but through an IV. I had been poked 10xs for IVs by this point (on my mom's blog you can see the pics of my bruised arms) and they would have had to start a separate line for the PPN since no other meds can go through the same tube. I had two IVs in so that would've the third. Lucky for me my mom suffers from a severe case of JMS (Jewish Mother Syndrome) it's incurable, but at this point it's proved useful that she has it, the symptoms of this syndrome include - major overprotectiveness, the need to make sure everyone is well fed 24/7, the desire to put loved ones in bubble wrap/helmets/any other kind of protective gear, and displaying signs of major germaphobia in airports/malls/any other place a loved one could possibly get ill - at this point there is no treatment, but I'm okay with that. If it were for my mom being the way she is I probably would've ended up on PPN, taking all the wrong meds that made me sicker, and could still possibly be stuck in the hospital. Which would be horrible because, as all of you who were following my mom's blog know, my hair would probably be in dread locks by now.

While in the hospital it's the little things that you miss; the ability to wear actual clothing, having privacy, taking a decent shower (heck you're lucky if you get a shower at all in the hospital!), and washing your hair! I hadn't used shampoo in 9 days while I was in the hospital! My hair was a rat's nest so we kept using a bottle of conditioner and lots of detangler every time we tried to brush it out. We would purposely leave in some of the conditioner so needless to say my hair was gross. As soon as I found out I was getting out my parents asked me what I wanted to do first. Most people say eat a decent meal, that wasn't appealing to me as I was just starting to be able to keep food down at that point, but I said - get my hair done and take an actual shower with actual soap! The hotel we were staying at had a salon in the basement so I got my hair washed and blow dried there and have been enjoying shower's minus the fact of being careful of my back. I have follow ups with my amazing neurosurgeon Dr. Tye on Friday as well as a follow up with a neurologist who was consulting on my case. Overall things are starting to look up especially since I can now wear pants and shorts again! *Hallelujah Music* I fly home on the 20th and I can't wait! By the time we get back Mom and I will have been gone for 5 weeks! Crazy right? I'll keep posting updates on everything going on here, hopefully nothing too eventful will happen.
All my Love ~ The Sic(k) Chick

The Night Before Surgery

Dun-dun-dun.... It's finally here - the night before surgery. Not sure wether that sounds like something from a horror movie or one of those sappy movies where everyone gets a happy ending. I'm going with option number two. I have to wake up at 6 a.m. to take my pills with a small sip of water then we go to the hospital to check in at 8. Surgery is scheduled for 10 a.m. but hospital is almost worse then Granoff time and that's saying something. I have to stop eating an drinking at midnight though, hopefully I'll be asleep by then. Surgery should be about 2-3 hours depending on difficult I make it for them ;) Unfortunately I'll be in PICU for three nights! Not fun.... In PICU I can't receive flowers or plants of any kind. Some people have been asking what to send, or what kind of flowers I lik, so please do not send flowers or if you do wait until I'm out of PICU. I really don't want or need anything though.

I can't say I'm not scared for surgery, but at this point I'm so ready to get it over with that it's weighing out most of the anxiety. Everyone I've talked to have said the worst part of the whole thing is laying flat for 72 hours. Many people have asked how the heck I'm going to do that because I'm never still. All of you who asked that have a valid reason to be concerned. The last time I was still was......well, you get the picture. Like my friend said, the most she's seen me sit for was a half hour episode of Say Yes to the Dress. I would like to point out that I can sit through Dance Moms and all of The Real Housewives which are both hour long shows, thank you very much. Hopefully after the 72 hours are over I'll be up and walking! I'm confident in the team at VCU and know I'm in the best hands possible for this surgery. Thank you for all the positive thoughts and prayers, I appreciate them all.
My mom's blog is listed under my links page, she will most likely be the one blogging for the next few days seeing as I will be out of it. I've given her the password to my blog though so she may update on here too. I've also given her the password to my Facebook account - no guarentees that she'll remember it - so she'll post updates on my page too.
All my Love ~ The Sic(k) Chick
ps-i'll try to blog tomorrow morning but it's probably going to be kind of crazy, in case i don't - bye until post surgery!

Finding Wally, an LBB, and Other Crazy Mommy and Me Things

Today I bought a little black book (the LBB). My primary care doctor wants me to 'journal' my symptoms and how I'm feeling the day before surgery and the day I get out of the hospital. He'd like it if I could do it one day post-op, but I'm probably not going to be up to it. You may ask how I would be able to tell the day after surgery if I'm feeling better, especially since I have to be laying flat which would make anyone not feel well but, all the people I've talked to who have had this surgery have all said 'As soon as I woke up I could tell that this, this, and that symptoms were all gone!'. I hope that happens for me. Tethered Cord surgery is a fairly simple procedure - for a neurosurgeon that is. Dr. Tye mostly does brain surgeries and neck fusions, but he does a fair amount of TC surgery too, so we're confident in him. He said what they'll do is make an incision in my lower back, cut into my bone, then snip the cord! After that they'll stitch my bone back up, stitch me back up, and send me off to PICU (pediatric intensive care unit) for the night! The reason I will be in PICU is not because of anything going wrong, it's just because with some of my other problems better safe then sorry is the way to go. I'll be flat on my back for 72 hours and after that how long I spend in the hospital is up to how I'm feeling. Knowing me I'll lie to everyone, say I'm not hurting and I've never felt better, just to get the heck out of there. Mom and Dad know that I do this, so reading it won't be a shock. Oh, by the way, you can go on my mom's blog (the address is on my links page) and see some pictures!

Now about Finding Wally- anyone who knows us, knows we do lost with the best of them! If Mom and I can find our way somewhere without taking a wrong turn, you should probably call air traffic control to be on the lookout for flying pigs! Everyone has heard of the game 'Find Waldo', it's supposed to keep younger kids (and myself) entertained on road trips and things. Well Mom decided that we should play a game of 'Find Wally', I told her that she meant 'Find Waldo'. She laughed and to cover up her mistake said, "Haven't you heard? Wally is Waldo's unappreciated twin who needs to be found too." Now we're on a mission to find Wally. So if you see him anywhere let us know!
We're moving hotels tomorrow to be closer to the hospital, which means tomorrow morning is going to be filled with packing. We're placing bets on which will be harder; packing our suitcases or loading up the car. If we get everything (including me and the chair) in the car we'll take a picture and post it. We'll drop our stuff off at the new hotel then try to find our way to the airport to pick my Dad up.
Countdown to surgery ~ 2 days (including today!)
All my Love ~ The Sic(k) Chick

PS- thank you to the best friends I could ever ask for; Jamie and Madeline! they sent me a blanket they made with the quote 'setbacks are just setups for comebacks' on it. I love you both Hugs!

Gotta Love them Goats!

Today we got to see my hematologist's goats! They are so adorable, I love them. I'm pretty sure I want one now, but I'm also pretty sure Dad won't let me get one. Also the dogs probably would hate me forever! Before the goats we went out to lunch and then to the science museum with some friends of ours. It was good to see them and I hope we can see them again post surgery. After the goats we met some other wonderful people; a mom and her son who have all my conditions. The mom has had the surgery I'm going to be getting and more, so has her daughter who wasn't able to come. The boy is 12 and my new little brother! As usual when EDSers get together we compared party tricks-I think I won for creep out factor, but we tied in amount of tricks-then we walked around the mall for awhile after dinner. I now have a new saying thanks to him-keep calm and slalom on. We played a game where he had to swerve my chair around the trees like ski slaloming. It was awesome! Lucky for me, he didn't swerve into any trees. We're planning on seeing them soon too.

Tomorrow is going to be a chill day, I'm hopefully going to be able to dye my hair! The store was closed on Saturday and we were too busy today to check, but it's my job to keep the dyeing streak alive with our medical trips.

The countdown to surgery begins: four days! On Thursday I'll have the surgery and will be stuck lying flat on my back for 72 hours post op! I'm so not looking forward to that! We may switch hotels early and move on Tuesday so we have more time to get settled in and everything. Mom and I are hoping this next hotel will have Bravo.

All my Love ~ The Sic(k) Chick

TGIF (thank goodness it's friday!)

Hi!  Today I saw my hematologist-he's great! Not only is he knowledgeable, but he has three baby goats! Yes, three baby goats and of course he has the momma goat too, but I was too focused on the pictures of the 3 month old babies! Since for me and Mom just seeing pictures aren't enough my hematologist said that we could come over sometime this weekend to meet them. I'm so excited! Tonight we met a wonderful woman whose son has RSD (the pain syndrome), we met at the hotel we're staying at then went out to dinner. I hope that after surgery we will be able to see them again. They live on a farm about three hours away from where we're staying, so we'll have to figure out where we'll meet up!

Tomorrow we're going to hang out with some other amazing people we met this trip. My grandfather's colleague and close friend Dr. Portner's son lives in Arlington, Virginia with his family and a few nights ago we got our families together for dinner. His wife made us a home cooked vegetarian meal and his two sons hung out with me. We watched TV and they taught me all about all the cool birds out there. For example; the Albatross won in five categories, longest life being one of them! They are going to drive out to us tomorrow night and stay the night in the same hotel as us. Then on Sunday we're all going to go to the science museum! I can't wait!

Surgery is all systems go for October 4th! I never thought I'd say this, but I'm actually excited for it. This time next week I'll have had the surgery and be stuck laying flat, it could be worse because I could still be waiting for it to happen. I have confidence in my medical team at VCU which is important and I know that everything will go well. I'm keeping to my promise-when I come to California I'll be walking!
Tomorrow is also hair dye day! It wouldn't be a medical trip without it. For those of you who read my old blog from my time in Cleaveland Clinic you know that when we got bored we dyed hair. Blue, red, polka-doted, you name it we did it! The hair place next door to us has this non-permanent stuff that you just rub into your hair and it works! I'm going with purple streaks probably :) If I can figure out how I'll try to post pictures.

All my Love ~ The Sic(k) Chick
ps-good news! mom and i didn't get lost today! of course we only go to the same places every day, but that doesn't matter it's a major accomplishment for us!

Courtesy Post

I've just been told that I've forgotten something important in my blogs so here it is-

Matt Fales is an amazing human being.

happy? ;) I think I've covered it but if I haven't email me and I'll add you to this list.

All my Love ~ The Sic(k) Chick

Garminless In Virginia

Hey everyone! I posted earlier today, because like I said in that post, I get a lot of questions about my problems. If you looked at it, hope it helped you and if you didn't look at it-what are you doing reading this? Go back, now! Joking :)
You should probably sit down for this...we stopped hotel hopping. I know, I know. Go back and read it again if you must, but it's true! We will be staying at the Aloft hotel in Glen Allen, Virginia then we check out next Wednesday so we can be at a hotel closer to the hospital. We can actually unpack! *choir of angles singing in the background* The only sad thing is this hotel doesn't have Bravo. No Real Housewives of New Jersey, no Real Housewives of New York, and no Real Housewives of Orange County! It's torture! We're surviving though because they at least have TLC and Lifetime (hello Dance Moms!), plus we can always download episodes onto iTunes.
When Dad left today (he's going home then coming back pre-surgery) he took the Garmin with him. The Garmin is our navigation system. It is the best thing ever, without it we'd be lost. Since Mom and I are without it, well lets just say it's been interesting. We've been using her iPhone maps thingy....it is worth nothing! If I - The Great Navigator as my Dad deemed me - can't figure it out, that tells you something. It's okay though because Mom and I have lots of fun getting lost. We blast the music, scream at each other to turn it down so the other can navigate, then when we get to our destination-the correct one-we grab hands and cheer and scream like the psychos we are. It's like Mom says, it's the little things in life. Love ya Mommy.
My MRI went well, I did not have a panic attack-whoo hoo! It was pretty short since it was only my lower back, unfortunately my whole body (head too) was in the machine  (doesn't help with the panicking!), but it went well. I counted to 10 repeatedly, then when I got bored with that I moved on to 8, then finally tried saying the alphabet in my head in time with the MRI beep, beep, beeping. It was surprisingly hard since the beeps go really fast and there's other beeps going on at the same time as the beeps I was trying to follow. Wow, that was confusing.
Tomorrow I'm seeing the hematologist (blood doctor) and hoping that will go well!
All my Love ~ The Sic(k) Chick
Dad: if you're reading this-I love you and miss you! Give the dogs a pet for me and please let Nala sleep on the bed with you tonight, pretty please? Have a safe flight, hopefully it's taken off by now. Hugs!

Breakdown

Okay-so I know you've all been wondering exactly how my body works. The usual questions are 'if your body doesn't control your heart rate wouldn't that be a problem?' well yes it is. Another one 'you really can't feel your lower legs?' the answer again is yes, then whoever asked this question goes onto test it by kicking my shin and asking 'can you feel this?' no 'can you feel this?' no 'you really can't feel this?' and by this point I'm ready to kick this person in their shin and 'say i know you can feel this!', but I don't. Sigh.  Anyway so here you go in terms I think everyone will understand: I am part alien, part vampire, part werewolf, and all parts messed up.
I am part alien because I have whats called blue schlera in my eyes, it's common in EDS and other similar syndromes. It means that my brown eyes have a ring of blue around them, like in the trailer for that movie 'The Host'. The other reason I'm part alien is because my EDS 'party tricks' have been referred to as 'out of this world'.
I am part vampire because I'm extremely pale-like vampire pale. I also am not bothered by the sight of blood and I have a bleeding disorder myself.
Finally I am part werewolf because of my super hearing and super smell. With Dysautonomia everything your body unconsciously controls for you, mine doesn't; sight, smell, hearing, touch, heart rate, blood pressure-you get the idea. So because of this I can hear things other people can't hear (the lights working or when my parents are whispering in the other room I can clearly make out what they're saying-handy right?). With the super smell my sense of smell is intensified, for example; one day I was talking to my Mom, we were laying on opposite sides of the bed and I asked her if she had eaten gummy vitamins and drank coffee this morning. I was right. The downside is that I can't go into stores like Bath and Body or Abrecrombie. It bothers me too much and I can go into full on cough attacks if I walk through the perfume department in Macy's.
Well that's it! I hope it made sense :) If you have any other questions for me just ask!
All my Love ~ The Sic(k) Chick
p.s.- i'll post again later today and let you all know how my MRI goes!

The Third Doctor's the Charm

First-sorry for all my grammatical errors in my last post, I was tired and being rushed by someone (cough, Dad, cough), but I really wanted to post something so you'd all know what's going on!
Now let me tell you what's gone on in the past few days! We saw Dr. Sandhu, he wasn't as wonderful as we expected. He believes that my tethered cord is secondary to my scoliosis (curving of the spine) and it would be pointless to put me through tethered cord operation since it would be fixing the symptom and not the problem. Unfortunately he is wrong. He referred us to talk to a doctor down in San Diego who he said he knows very well and he also said this doctor will definitely do scoliosis surgery on me. *side note-scoliosis surgery is a major surgery for a normal person so imagine how it'd go on me* This doctor in San Diego not only is almost retired, but if a patient has scoliosis and a known tethered cord you always do tethered cord surgery first. This isn't to say that I won't need scoliosis surgery eventually (which I may), but now is not the time especially since tethered cord surgery is a much more minor surgery and is probably what I need. After this appointment Dad and I finally got to see Judge Dredd! It was very good, bloody, but good-the action and gun shooting was very therapeutic. Seriously, AMT (action movie therapy) is very underrated, but I think it's way better then any other kind of therapy (yes retail therapy is included Mom).
Today we saw Dr. Tye, a neurosurgeon in Virginia. He is amazing! I can't say enough about him. As soon as he walked into the room he looked at me and said one thing, "You're a mess." I can't agree more. ;) He went through my films, un-diagnosed me with something (very happy to get this diagnosis off my ever growing list), and set my surgery date for October 4th. Sadly we're staying here until then, so I probably won't be home until the 20th or so of October! I'm just glad that it's finally getting done though. Dr. Tye wanted me to see some of his physicians at the hospital there; the pediatrician and the hematologist (blood doctor). He called the pediatrician, Dr. McKenna who is also wonderful, right after my appointment and the office fit me in this afternoon! Tomorrow I have to get an MRI of my lower back. I'm not usually claustrophobic, but I get that way in MRI machines so wish me luck!

Dad's going home tomorrow and it'll just me and Mom. We're going to switch hotels again on Friday (that will be the 6th hotel, we're at the 5th now) so that should be interesting. Since it'll be just me and Mom it won't be as necessary to have a suite. As long as we have Bravo and TLC on our TV, a good takeout place around the corner, and cozy blankets we're set. We also need the navigation system. We wouldn't survive without that. Hopefully I'll be able to post again tomorrow depending on the schedule!
All my Love ~ The Sic(k) Chick

The Wandering Jews move on to Georgetown

Hey guys, sorry for not blogging yesterday but I have a good reason. Promise! So as you can tell from the title my family has embraced our Jewish heritage and in that have turned into 'The Wandering Jews'. Four hotels in 7 days. Don't even get me started on the horrible unpacking/repacking process! Dad of course being organized unpacks at every new hotel (I'm talking clothes in the drawers unpacked), but this isn't me or Mom's first time at the rodeo-we live out of our suitcases. First we went from the Hilton Garden Inn to the Homewood Suites. That move wasn't bad because the buildings are attached at the lobby so we just packed up and walked on over. We switched that time because the Garden Inn wasn't suites and let's just we all needed a little space from each other [ahem-Little Miss Sunshine (dad's nickname for mom) and Mr. Doom and Gloom (mom's nickname for dad)] so that all three of us can make it back to CA, not just two or one of us. Then we moved so that we could be closer to the new hospital. Last night we moved into the Georgetown Suites-let's just say that didn't work out either. It was just well....weird. Kind of reminded me of that line in 'Hotel California'- "You can check out anytime you like, but you can never leave". Now we're at the Savoy Suites which is nice and handicap accessible. Problem is it's not a suite so let's see how long we can go without threatening to cause bodily harm to one another. Anyone want to place a bet? Anyway so now we're in Georgetown and it's pretty nice here, so let's hope we can keep it this way!

Dad and I went to see the movie Trouble With the Curve today and it was great! We're going to see Judge Dredd tomorrow, because if we get bad news at the doctor's Judge Dredd will be a much more... appropriate movie. When Dad and I went to the movie the parking garage said $8 so we thought 'that's great the other lot was $11. go us!'. Well it turned out it was like $8 an hour because after 2 hours and 22 min (no I didn't count, that's what the ticket said) it was $25! Yes that's right, twenty-five dollars! Insane right?
I have to go to bed since we have to get up early to see Dr. Sandhu tomorrow. Hopefully I'll have good news to blog!

All my love ~ The Sic(k) Chick

Perking up in Purgatory

As everyone knows I have a very perky personality (not!) so if I say that things are perking up I really mean it. The doctor called back today and we have an appointment on Monday for a consult. He has looked over my records, but we don't know anything else. I'm hoping that since he wants to see me that means he's going to be willing to do surgery. Hopefully he'll be able to fit me in next week, but if he can't we'll probably fly home then come back. I'd prefer not to do that, but we have to do what we have to do. I'm excited to meet this guy since we've been waiting so long now! People always say 'setbacks are setups for comebacks' so I'm going with the notion that this is all a setup so I can come back better then ever! Like a family friend of ours said I hope I get on that OR table soon!

Dad and I didn't make it to Judge Dredd today, but we did get to walk around Annapolis. It's really pretty down there, like an East Coast version of Balboa Island. Lots of souvenir shops, it's on the water, and plenty of ice cream and cupcake stores! Cupcakes here are amazing I've gotten cupcakes from all different stores and I can honestly say that East Coast is better then West Coast when it comes to cupcakes. Tomorrow I get to see my beautiful, amazing, and fabulous cousin Sarah! I haven't seen her in a year and two months (yes I counted, I miss her!) so I'm excited to see her and my Uncle David too.

Weather here is still 10 times better then in California! There's actually a breeze here....novel concept right? This is my perfect weather because I can be in sweats and be just as comfortable as I am in a skirt (I still can't wait for surgery so I can wear shorts again!). I also love the convenience store in the hotel lobby so I can send Dad down for late night Ben and Jerry's. Over all things are perking up ;)

Lots of Love ~ The Sic(k) Chick

Things Are Looking Up from Limbo

Hi everyone! As you can tell from the title things are finally looking up. I'm seeing the new doctor's assistant tomorrow for a brief consult. We're going to drop off the records and talk about possibilities. This doctor is definitely going to do surgery on me the question is when. Usually it takes a while to even get into him let alone get surgery, but they're putting me on the fast track!

I had the absolute best time tonight though! We met some fabulous people who also have EDS. One of them had the surgery I'm having, two of the others have had other surgeries that I may (but hopefully won't) eventually need, and one of the other ones is scheduled for the surgery I'm going to get  by this new doctor. It was great talking to them and we all had a ton of fun; sharing EDS jokes, showing off our 'party tricks', and comparing side effects. They are all great people and I hope to be able to see them all tomorrow before they go home to New York.

Hopefully Dad and I will make it to Judge Dredd tomorrow, since I won't be in the hospital. Never thought I'd be sad about that... If we don't though there's always the weekend! If anyone sees it before we do let me know if you think it's good!

All my love ~ The Sic(k) Chick

P.S. Shout out to my new big sister, Nicole! Love you <3

On Hold at Hilton

As you can see from the title we are still on hold. Last night Dr. Henderson called us to say that he can't do the surgery, but there is another doctor here who he refers to Georgetown University Hospital who is willing to do my surgery. The doctor's name is Dr. Sandhu he actually trained under Dr. Henderson so we trust him. The only problem is that he is booked up! Dr. Henderson called in a favor so he's going to try to fit me in as soon as he can. Depending on when that is, my Dad will either stay longer or leave soon then come back when I'm have surgery. That's where we are now so like my Aunt Monica said, 'Let's hope she gets on that OR table soon!'.

The movie Judge Dredd is coming out on Friday (the original was with Sylvester Stallone) so Dad and I are probably going to go see that, it's too bloody for Mom. I never thought I'd say this, but I really hope I'm not seeing that movie and that I'm in the hospital! My friend Karen is coming on Thursday because she has a follow up with Dr. Henderson so we'll get to see her and my Auntie Aurora hopefully! Today we're going to stop by Dr. Henderson's office to get my records then look at a place for us to stay in Georgetown that's closer to the hospital. Yay for hotel hunting....
At least we'll be closer to Georgetown Cupcakes!

All my love ~ The Sic(k) Chick

Rocky start in Rockville

As you can probably tell since I'm blogging, I am not getting surgery. As some of you know last Thursday we got a call the Doctor's Community Hospital could not do surgery on me because I'm too young. They treat pediatrics, but you have to be fourteen or older for this specific surgery. My doctor then made a call and got me into Shady Grove Hospital, they no longer have a PICU (pediatric intensive care unit) they are scared because of my bleeding disorder that I could need to be in one even though my neurosurgeon and my hematologist both don't. We got this call yesterday afternoon and I was supposed to be getting surgery at 7:30 a.m. MD time. Dr. Henderson, my neurosurgeon, got two our of the three heads at Shady Grove to agree to do it, but the third won't have an EDS patient there. We are now trying to convince Doctor's Hospital to get me in because I'm too young by 6 months and there really should be no reason for me to be in PICU at all. If this doesn't work out there is another surgeon Dr. Henderson refers to in DC. He's planning to call in a favor and see if this doctor can get me in soon. If not well, we won't think about that now.

Onto better, more exciting things! At a shopping center by us they have a whole Lindt chocolate store! It was amazing! Obviously we got a lot of chocolate so we should be good :) We stopped at Georgetown Cupcakes last night (they are on the show DC cupcakes) and I have to say it was delicious. I got they're cookies n' cream cupcake, it was great! We also got the caramel apple, but we saved that for today so as soon as I try it I'll let you all know how it was. It's raining here so we'll probably be stuck in the hotel room most of the day (pajama party!) but I'm okay with it. The weather here is a nice change of pace from the weather in SoCal. It got up to 105 degrees last week! If anyone has any suggestions of things to do here since we'll be here for a while just let me know! It is raining though so forgive me if walking around outside isn't high on my to do list.

All my love ~ The Sic(k) Chick

Hello from Maryland

We landed in Maryland today! Getting here was the hard part though.... We woke up at about 6 only to have my lovely mother turn her phone on and get an email saying that our flight had been canceled. Needless to say we were not happy. They switched our flight to another one about an hour later then our previous one. When we got there we found out that we were all sitting in middle seats separate from each other. Oh and let me also add that when I fly I faint because of the altitude change so you see where this could be a problem. Now the story starts looking up - after a while the airline found a really nice person to switch his isle seat for my middle seat so I could sit next to my mom. My dad was still sitting separate from us, but it turned out that the man sitting in the window seat next to us was an old friend of ours! He switched seats with my dad so we could all sit together. How sweet right? We went to the rental car place, went through two cars (one wasn't big enough and in the other one of the seats wouldn't fold down) before we got the one we have, got lost for a little while (we wouldn't be us if we hadn't), checked into our hotel, had to switch room because the first one smelled like mold (yuck!) and brought in food from an Italian place nearby. Now I'm sitting in bed typing this. :)

I have to say so far I really like Maryland! It's pretty out and best of all...wait for it....it's under 80 degrees here! In California it's been ridiculously hot out (it got up to 105 one day!) so this is a nice break. When my dad went out for food he said he could've used a sweater! Tomorrow we'll probably wheel around Annapolis, but first I have to pre-register at the hospital and go see a hematologist (blood doctor). We'll see how it goes!

All my love ~ The Sic(k) Chick

Ode to Wheel Chair

Wheel chair oh wheel chair what fun we haven't had
Getting dumped into the street was pretty bad
I have to admit won't be sad to see you go, but I will miss the fun we had running over toes
So my chair this is goodbye hopefully for forever this time

Welcome!

Hey all! My name is Shira, I'm thirteen, and I live in Newport Beach, California. Yes that's right, Sunny SoCal. Before you ask I'm not tan (i'm actually white as a vampire), no blue eyes here, and beach volleyball + me = bad things... ;) I started this blog as a way to reach out to others in similar situations as myself, also to let people know what's going on with me since I'm having an upcoming surgery.

I am the original Sic(k) chick. When people say that they’re one in a million, they mean that they’re unique. I actually am one in a million because of my rare diseases. I have Ehlers-Danlos Syndrome Type 3 (hypermobility); it is a genetic collagen tissue disorder in which my collagen is too stretchy and that causes problems. All my joints randomly dislocate, but on the plus side I am extremely flexible and can do lots of cool ‘party tricks’! I have Dysautonomia, which literally translates to the failure of the autonomic nervous system. Basically everything your body unconsciously controls for you, mine doesn’t. My body doesn’t control it’s temperature, heart rate, blood pressure, internal organs, and my five senses. My friends say I’m part werewolf because I can hear and smell things other people can’t (also according to some people I have the temper to match too…). Part of the Dysautonomia is Postural Orthostatic Tachycardia Syndrome, or POTS, when I change posture my blood pressure drops so my heart rate steps it up to compensate, then well, I faint. Adding to the ever growing list of rare diseases I have a neurovascular pain syndrome called Reflex Symapthetic Dystrophy and a rare bleeding disorder that I can’t spell so I’m not going to try!

Just because I’m ‘disabled’ doesn’t mean I can’t do things! I try to do things normally, whatever that means. I go to school, take piano lessons, and enjoy being a spastic teenager. As I always say, disabled really means differently abled.

I recently found out that I have Tethered Cord Syndrome, which is common with EDS. My spinal cord is tethered at the bottom of my back and they will have to go in and remove it surgically. My symptoms of TC include; weakness of my legs, numbness/tingling in my legs, and back pain. I’m set to have surgery on the 18^th of September in Maryland preformed by Dr. Henderson. If you would like to know more about any of my illnesses or my upcoming surgery please go to the links section.

All my love ~ The Sic(k) Chick