Thursday, March 31, 2011

Can't Sleep

Ugh, I hate it when after watching TV with mom I am tired so I come down and actually go right to bed (instead of doing all my computer stuff for like half and hour before sleeping) but then can not get to sleep for the life of me.  I was exhausted at 10:30 but here it is 2am and I am wide awake :S  So I figured why not put up a post.  Something is bugging me but not really important but since I am bored and can't sleep I will post what has been doing on.

Today I woke up and had planned on going to a meeting at K school (just so the resource teacher could talk to my dad about what is going on with K) but my lower back just felt all kinked up and it hurt to take a deep breath.  Took some advil and went back to sleep instead of getting up.  Mom and dad got home around 11 and asked if I wanted to go into town but I still wasnt feeling all that great so stayed home.  I got up around 1:30 (that is actually early for me sadly) and messed around on the computer before going upstairs.  We have a raised-ranch style house so we have the basement and the upstairs with our front door being on a landing between floors.  So we have two half-flights of stairs.  I got to the landing and honestly wasn't sure I was going to make it all the way up.  My legs felt so tired and weak!   I made it up and while getting a glass of chocolate milk (for some reason even though I am basically lactose intolerant I can tolerate chocolate milk, we think it's the sugars.  I need to have dairy daily for the osteopenia) and lost my balance and had to grab onto the counter to stop from falling.  Back downstairs I went.  When I got called up for supper I took all my 'night things' (glasses, a book etc to use while watching TV or before) and seriously wondered if I would actually make it up.  I had to go right over to my chair and sit down as my legs felt so weak (I usually help mom set the table and get all of our vitamins doled out).  All evening my legs just felt so tired and the few times I got up I seemed unsteady on my feet.  Came downstairs and it just felt like my body was exhausted and that was why I tried to go to bed early but my mind wasn't tired.  I am still having lower back pain and pain in my one hip and my legs are still feeling shakey and weak.  Will have to see how it goes tomorrow.

Tomorrow will be pretty good.  K goes for grading tomorrow night to get his blue belt in karate.  He has been stuck at his purple advanced belt for quite a long time and we were getting annoyed as he was seeming to fall through the cracks but he is back at it and hopefully can get back to getting his belts in a more timely manner (he was getting very frustrated being on that belt so long!).  He started last february and this will be his 9th belt (he has got his white, white advanced, yellow, yellow advanced, orange, orange advanced, purple and purple advanced).  After this he just needs to get his blue, blue advanced, green, green advanced, 3rd degree brown, 2nd degree brown and 1st degree brown and then goes for his junior blackbelt!  We are so proud of him and he really excels in this sport and has gained so much confidence from it.  It's an amazing dojo and the sensei and other instructers are really good with kids and the one teacher, Mr. R, has a learning disabled son whom was not supposed to live an independent life but he put him in karate and the boy is holding down a job and his own appartment.  So Mr. R has been really good for K and K just loves him, well he likes all his teachers but Mr. R is really special.  Sensei R is also really good and sees K as his little protegie and envisions him going straight through to black belt with not too many issues.  Once K gets to his blue advanced belt he gets a new weapon which should be good, it will be the first real weapon the 'tonfa' (click for a picture of one). He has done small sticks, batons and staff but this will be the first actual weapon, after that he goes to nunchaku!!

Well I have babbled on here about basically nothing so should probably go and try to get some sleep, or at least find something to do!

Tuesday, March 29, 2011

Difficult, but important, conversation

I had mentioned the other day that it was just my nephew and I at home this weekend as my parents were gone for the weekend.  He was sleeping down in my room (well really a small apartment thanks to my parents) and on saturday night I turned to take my pills and turn back around to K asking "Are you taking your pills?"  Then the seconds seemed to tick by ever so slowly when I didnt know what to say or where this conversation was going to be going and how I wanted the conversation to go.  Quickly in my mind I realized that this is something that K actually sees day to day (my health issues) and he already knows that I need medications so I can feel better.  However, he is only 9 years old and has had enough stress in his young life already and I did not want to scare him or even think for one minute that I won't be there for him in the furture!  "Yes K, I am taking my medications. Why?"

I guess I should quickly note that K knows that I am not perfectly healthy.  He knows I take medications to help me, he knows I get headaches often and he sometimes has to be quiet so I can sleep them off.  He knows I can't walk too much and he also will help me if we are out shopping by getting things off low shelves for me.  He knows there are times when I can't play with him and that there are days that we just cuddle up on the couch and watch movies all day.  He is one amazing kid and makes my life so much richer.

He says he is just wondering, and after a slight hesitation he asks what they are for.  Now I would never show him my medications.  Not becasue I don't want him to get into them as he has been told from day one that you never touch anything that might look like medications unless Nanny, Poppa or Nini (that is what he calls me, he couldn't say Auntie so he said nee-nee and we spell it Nini) is giving them to you.  I just didn't want him to as they look like there are so many of them because there are a few medications that I have to take two pills to make the dose I need and there are also vitamins in there.  I told him that I take something for my headaches, one for my stomach, one for my heart and one for my sweating and he interupted and said "and something for your knee" and I clarified and said that I take something for pain, which right now is mainly my knee.  He thought for a moment and then says "Nini, your body really sucks".

After another breif pause he asks "Are you going to die from it?" which was like a knife through my heart.  I told him that no, there was nothing wrong with me that was going to make me die.  "Then why do you take medicine for your heart?".  I tell him that the medicine for my heart is because my heart goes really fast and will make me tired a lot because of it so the pills help slow my heart so I don't get as tired after doing things.  At this point I figure it's time to tell him a bit more about EDS and what it means.  I go down to right beside him on the floor and grab one of my EDS books (my laptop was upstairs and I didn't want to make him wait).  I showed him all the pictures that we can do and he tried them as well and could do most of them himself.  Then I tell him that kids should be able to do these things, adults shouldnt and that is what causes problems.  We talk some more about how I get so tired and in pain and that I need more sleep than most people and stuff.  Then I tell him that this is why I won't be having any kids, because I don't want to pass this on to anyone else becaue that just wouldn't be fair to the kid.  Then I tell him that is why our home situation is perfect, I get to see and help him grow up as I won't be able to do that with my own kid.  A few more basic questions and then something on the TV catches his eye and the conversation is over.

It probably only lasted around 10 to 15 minutes but it felt so much longer.  The next day he told me that if I was still tired I could have a nap so we could play that afternoon, which I thanked him for and one more time I tell him that he is such a good kid and really helps me out by helping to do the little things that need to be done.  That afternoon we curled up on the couch and watched a movie.

Friday, March 25, 2011

Weekend with My Munchkin (K)

Most people know by now that my 9 year old nephew lives with my parents and I.  My parents have had full custody of him since he was about 15 months old.  We definitly have a unique situation going on but it is perfect for us :D  My parents decided to go away to a friend's house for the weekend and so it's just K and me (and the dogs) all weekend.  I sleep on a waterbed and have all my life, my parents (and K) all have normal beds.  I don't do well on normal beds and don't sleep well, and I do not to well on little sleep.  So my parents took the matress of K's bed (one of those new foam types that are pretty light) and brought it down to my room to put on the floor for him to sleep so I could still sleep in my waterbed.

I picked him up from school and we came home and he played on the Wii for awhile and then we left around 4:30.  We first went in and went to the theatre to get our tickets in advance for 'Diary of a Wimpy Kid: Roderick Rules' and then went to Pizza Pizza to order our supper before heading over to Walmart.  They had a pile of Bakugan stuff on sale thursday when we went in and mom got about $80 worth of stuff for only $12.50.  Thankfully we had got all the main pieces (they had some nice tin boxes with special ones that would work great for storage on for $2.50, there were three colours so we got all three) as they were very picked over and nothing new today.  He really wanted some Halo action figures and, as it was his money, I agreed he could get a two pack of the action figures but made sure he knew that he would not be playing the game for a very long time!  We then went back over to Pizza Pizza for supper, and after a breif mishap we were able to eat and get to the show in good time.  I got a small popcorn and a large pop (I need lots of liquid now a days) and got K a large slushie then we went in and watched the movie.  They are actually pretty good with good story lines that aren't to cheesy or 'pushy' in morals.  After that we went back to walmart as I wanted to get something (in the end they didn't even have it!) but while looking at games (checking out the price for the Wii game we rented) I found the game "Beastly" (after the book and movie) for $19 so picked it up. 

We had a nice 'surprise' when we got home.  Tazzy (our little 15lb Jug - Jack Russel and Pug) had got past the gate and into my room.  He also managed to dig / rip a good 6 inch slash in K's sheet and made it right through the foam mastress topper (thankfully just one of those egg shell ones, not memory foam!) and there was foam all over the place.  I will try to put up a picture of it later (just quickly typing this up while K winds down from the day before we go to bed).  So we had a great deal of cleaning up to do and then having to remake the bed.  Now we are all holed up in my room and all four of us will spend the night here - m, K, Tazzy and my dog Shaggy (around 35lb Tibetan Terrier and Lhasa Apso mix, and my suck and first dog that is actually mine and not the familes - even though he is treated and acts like a family dog).  Just letting K watch some Star Wars Clone Wars on the TV as he is curled all up in bed with both dogs on there with him while I finish this then I will go to bed and read for a while.  My knee and mouth are hurting pretty bad now (knee - all the hurried walking we did, the driving and sitting in the movie theatre; mouth - eating spicier foods like pizza and attempting to eat popcorn) so I have taken some pain killers and just waiting for them to kick in.  Hoping that K doesnt wake up too early tomorrow morning!!!!

Thursday, March 24, 2011

Rheumatologist Appointment

The last appointment of the week finally!  First thing he says as he watches me walk to the chair is 'You are walking horribly on that left foot', had never seen someone who turned over so much before, especially in shoes!  I gave him the report of the CT scan that I had done and he mentioned that he wishes he had got it sooner but when I told him I only got it myself on tuesday he thanked me for bringing him a copy.  He asked what the clinic was thinking and I told him that I had to go see Dr. L to see if I was a surgical candidate or not.  He said he hopes that they can fix it and that it isn't something we look back on in 20 years regretting.  He then got out the bloodwork results and it's definitly good news!  Even though I have early signs of either RA or Lupus, all the bloodwork has come back with negative values :)  It is things we will have to keep an eye on, especially as I am showing early signs with my hands and 'bumps' and sjorgrins types of issues.  He then asks me if I have tried another medication and when I said no he said that was good as he was looking at it for the future.  Imagine that, a doctor that not only has a plan, but also a back up plan for when the first plan doesn't work anymore!  Everything was good so I go back to him in two months, just shortly after I see Dr. L.

Mom and I than headed over to Walmart where I bought two CD's (Adam Lambert's Live CD and Pink's greatest hits), two DVD's (Yogi Bear and The Day After Tomorrow) and yet another book (Diane Chamberlain's The Lies We Told), then we went to Arby's for lunch and headed home.  I crawled into bed to have a nap before K got home from school.  I got up when he got home to go and help him with his homework than I took him into Karate, just the two of us.  He did well, got his form for grading next week which will put him at a Blue belt finally (he got held up on his purple advance because of the instructors and him getting messed up memorizing his weapon, staff, move - short term memory is one of his issues with his CAPD).  After that we headed over to Blockbuster for him to pick out a game for the weekend.  My parents are going away for the weekend on their own for once so K is staying home with me.  I didn't want to leave Blockbuster til friday as I knew the game he would want (even though he didnt think he wanted it until I showed it to him lol) so thought it might be out of stock.  We got the game he wanted (Star Wars 3 Lego - Clone Wars) and picked up two more DVD's (The fourth Shrek and Alpha & Omega) on sale so we have those as well. 

Got home and we watched American Idol (not sure if I agree with the save but just glad it wasn't Stefano going home) and mom and I watched an episode of Buffy and that was about my day :)

Wednesday, March 23, 2011

Get to know me 'quiz'

Well since I am wide awake and not tired (and trying to stay occupied so I don't go googling more autoimmune disorders before my appointment tomorrow) and I saw this somewhere else I figured why not fill it out so you can all have strange and weird facts about me :D

A. Age: 29

B. Bed size: I believe it is called a 'super single' it's an old waterbed

C. Chore you dislike: don't do many anymore (tend to break things are make things worse) but I hated loading the dishwasher - especially when someone will put some water in the sink to let something soak then others pile more dishes on top of it and you have to reach into the water, totally disgusting!

D. Dogs: Yup, love them and couldn't live without them.  I have my dog, Shaggy, who is a lhaso-apso and tibetan terrier mix and is 5.5 years old and we have a family dog, Tazzy, who is a Jug (Jack Russell and Pug mix) who is 1.5 years old.  I have had two other wonderful dogs in my life and am thankfully for all the love they gave and was very hard to lose them.

E. Essential start to your day: Take my morning medications then go and check out my email and stuff online

F. Favorite color: Blue, and some purples (Ironically my high school's colours were blue and white and my universities were purple and gold)

G. Gold or silver: Silver

H. Height: 5'3 at the start of the day and 5'2 at the end lol

I. Instruments you play(ed): Always too klutzy and non-artistic to play any music. Guitar would have been fun though

J. Job title: Officially Disabled, would love to do webpages in my free time if the opportunity presents itself

K. Kids: That's a tricky one.  Anyone who knows me is aware that I think of my nephew as my own child.  I live with my parents and my parents have full custody of him so I get to help out in the raising of him and watch this amazing young man grow into an even amazinger adult.  As far as having kids, it will not happen.  When I was diagnosed with EDS and found out it was genetic I made my mind up then and there (literally in the genetisists office) that I would not risk passing this on to a child.  They would have a 50-50 chance of getting it and not to mention that it would probably adversly affect my health as well.

L. Live: Southern Ontario, Canada

M. Mom’s name: Linda - my middle name is from her, Lyn

N. Nicknames: Nini (K), Muff (dad), Stace (everyone) but no real nicknames, my friends tried out many in high school but none of them never really stuck

O. Overnight hospital stays: a few as a child - pnemonia, concussion, tonsilectomy, tubes in ears, infections and 2 months in the NICU when I was born.  Thankfully none as an adult, despite all the surgeries

P. Pet peeves: People who do not respect others, people that use others for their own gain, people who have their priorites all messed up, liars and fakes.  All really back to the respect issue

Q. Quote from a movie: Totally drawing a blank!!

R. Righty or lefty: Right

S. Siblings: Another tough question... I prefer to think of myself as an only child, but as I have a nephew I obviously have to have a sibling, legally at least...

T. Time you wake up: Whenever my body decides it has had enough sleep, usually noonish :S

U. Underwear: Strange question! Of course I wear underwear

V. Vegetables you don’t like: most vegetables!  I like some raw veggies with dip, or corn on the cob or decobbed (as long as it's not creamed!), I am more of a fruit person

W.What makes you run late: Getting ready taking more time than normal becaue of some strange health quirk (dislocation, sweats, fatigue etc) but I am generally on time, if not early

X. X-rays you’ve had: LOL not even going to attempt this one!  I have had three sets done so far this year!

Y. Yummy food you make: Shepards Pie, a really good taco dip

Z. Zoo animal favorites: If there is an aquatic section then that is my favourite part, otherwise it would have to by all the different types of monkeys.  The lions at the last zoo we went to were fascinating to watch as well, just not as entertaining as the monkeys

Dentist Appointment

Well I went in to the dentist today to get things looked at.  Thankfully I 'just' have a massive canker sore on the inside of my cheek / gum line going on.  He said it's pretty nasty looking and probbaly more painfull than anything he could ever do lol.  He suspects I probably had something viral going on and it found a place to appear in my mouth after the surgery.  Nothing that can be done for it, just grin and bear it basically.  He did check out things and made sure the teeth near it were okay and could have pressure and checked a few of the fillings he did to make sure they were okay.  He said that they usually last about 10 days, but for me we would give it two weeks lol (I didnt tell him it's already been 7 days!).  He told me to just take my normal pain killers and said that the ear and jaw pain were normal as it is pretty large and aggrevated and then made sure that I had pain killers.  For me the most telling part of the entire appointment........ He didn't tell me to just go and get some orajel to put on it to numb it!!  I am sure this is the suggestion given to most people with mouth pain but he didn't go there, and since orajel is a topical anesthetic, it wouldn't work for me anyways which he probably figured out so didn't mention it! (how do you like that run-on and circular sentance lol). 

Mom and I got thinking and we have figured it out we think.  I felt fine going into surgery but after was just abnormally tired and had a horrendous cough and just acheyness.  Well a few days later K comes down with the same cough and feeling the same as I had.  So we figure I had the beginnings of a cold going into surgery so that virus just found a place in and manifested itself as a canker sore.  That's our theroy anyways and we like it ;)  We did go to the drug store and found something for canker sores that doesnt have any *caine's in it (those are topicals, they mostly all end in 'caine') but works by putting a film over the sore.  As this sore gets scratched and irritated every time I even open my mouth because of the position it is in, I hope it works!  Was waiting to get supper over and down with before trying it.

I have to admit, last night my imagination got away from me and I started to think of all the bad things it could have been, infection being the most basic one.  I got worried it was from my osteoporosis medication, thought it was an absess, something that would have to be worked on (like lanced or something) and on and on.  So I did feel kinda stupid going to the dentist for a canker sore but he did tell me that it was good that I got it looked at as the problems I am having could easily have been a bad infection and I was right to come and see him.

Tuesday, March 22, 2011

OS Appointment

It was weird going to the clinic today to have my follow-up after the CT scan.  Exactly 9 years earlier I had been there having my second knee operation so it was just kinda strange.  Not too much to report though.  She showed us the report (and gave me a copy to take on thursday to my rheumy) and the scans.  Weird thing is that if you just had the scans and nothing else, you would think I was being seen for my left knee.  On the scans it shows that when my quad's were constricted my right knee subluxed laterally 10% while my left knee subluxed laterally 30%.  Apparently I dont really have a 'grove' for my knee cap to sit in, it's almost like a flat surface and that plus the ligament laxity plus the hypermobility plus 'me' is what causes the problem.  Dad kind of joked at one point that it was too bad we didn't have a good knee to compare it to and she said that no, neither of my knees were good.  So I asked if in reality my left knee was a lot worse off than my right knee she kinda just said well we are going on symptoms for now.  Becasue I go see the top Doctor in two months (which she was shocked about as it usually takes around a year to get in to him) she said she will just leave things and it will be up to Dr. L to decide if I am a surgical candidate and for which procedure.

That's about it, nothing really happened except I have a copy of the report to take to my rheumy on thursday.  It's going to be a busy week!  Had my OS appt today, go to the dentist tomorrow for a very probably nasty infection going on, rheumy on thursday and then my parents are going away for the weekend leaving K with me so that means not much sleep!  At least I have the weekend planned (basically) with things for us to do :)

Saturday, March 19, 2011

Scarey Thought

When I went upstairs for supper, I complained (well okay I out right whined) that my mouth was still hurting.  That it was the teeth and gums and it was just unrelenting despite all of the pain killers and advil and icing.  Nothing seems to be able to stop it and the teeth are all hyper-sensitive right now.  I said a joke and then mom and I just stood there in silence as we wondered if that might actually be the problem and we have no clue what would happen if it was true. 

You see all the fillings I have had so far were all the white type.  This time, in the back teeth, he used a silver type of filling as he felt it would stand up better and work out better.  The pain in my mouth took quite a few days after surgery for it to start.  I was in absolutely no pain when I woke from surgery (except in my knee) and didn't really have any issues besides the anesthetic, blood pressure/pulse and lung issues right away.  I think it was at least 3 days before the bad pain set in the actually tooth and gum area (before that it was jaw line / ear). 

So our scarey idea ............................................. I am allergic to whatever the silver fillings are made out of

PAIN!!! (and real life)

Real Life #1
I didn't want to post about this until today so here goes.  On tuesday, I went to the bank (that's where I went up to my GP and asked to be seen after my appointment) as I really needed to do something financially.  As with most people, I have a reasonable sized debt.  Some from my last year at University, some for medical costs that I incured from having not medical insurance, a few items for setting my new room up (TV, furniature, bed in a bag etc) and, most recently, my trip to Baltimore last summer for the EDS Conference.  My dad went with me and we were hoping to be able to get a line of credit to transfer my credit card debt to so I could pay it off.  As it stood all I could pay was the monthly interest and not get the balance to go down at all.  During the meeting the lady seemed very interested in EDS and we talked at great lengths about it.  She even wrote it down so she could go home and look it up and included it in the papers to send to get approval.  As it turns out they don't give credit lines for the purpose I needed so instead she set it up as a loan.  Got a call the next day that everything went through, I got an even lower interest rate than we thought and should be completely debt free in about 4 years (that's if I don't pay earlier with saved up money or money coming in for whatever reason).  So very happy about that, I hate having debt and it's even worse having debt that you know you just can't get paid off when you have little income and such high interest rates.

I wasn't feeling well on wednesday and woke up on thursday in excrutiating pain!  My ear was killing me, half of my teeth were so sore I couldn't even close my mouth and I could barely eat as I couldnt bite down.  I did the icing, salt rinse, pain killers etc and nothing even dulled it.  I called the dentist and the earliest I could get in was next wednesday (because of my prior commitments not there's, they could have had me in the next day).  I just kept taking advil and my pain killers and trying to just ignore it but it was tough.  As a side note, things like oragel or other toothache topicals that you can buy - they don't work. The active ingredient in them is lidocaine which does absolultly nothing for me at all.  So it's just grin and bear it as much as possible.  This pain is just horrible!!

Real Life #2
But of course real life has to happen even when you are in such pain.  I had wanted to go shopping in the states for quite awhile and dad came in and asked if I wanted to go over to the states to do some shopping as he wanted to go over and fill up the truck before we go to the clinic on tuesday (he saves about $25 per fill getting it over there).  I was in a lot of pain but decided that I might as well go over with dad.  I could be in pain sitting here at home or go out and be in pain but get some things accomplished over there.  Got a lot of great deals, picked up 4 books (The Vampire Diaries: The Return #3: Midnight -LJ Sith; The Breakdown Lane - Jacquelyn Mitchard; Can You Keep A Secret - Sophie Kinsella; Look Again - Lisa Scottoline) as I am a bookaholic!, got lot's of dog treats for the puppies and picked up a few odds and ends food wise that we can't get here.  All in all we went to Walmart, Best Buy, Barnes & Noble and Target.  Then I treated my dad out for supper, he is a huge seafood lover (none of the rest of us are) so I took him to Red Lobster as he hasn't been in years.  He got a huge lobster and shrimp meal, I got fish and chips and we both got ceaser salad and cheese baked biscuits.  I then ordered cheesecake for dessert but had to take it and half of my supper home as I was so full!

Was in so much pain that night between my teeth / ear / jaw business and my knee acting up after doing so much walking (dad is a fast walker and I had to keep asking him to slow down!) that I barely got any sleep despite the pain killers and exhaustion.  Figured I would do what was needed the next day then come back and sleep.  Then that real life thing happened again.

Real Life #3
Had to go over to the bank to sign all the papers for the loan agreement (and was very happy as I got an even lower interest rate as my credit rating is perfect and all the other stuff the lady attached to it) so mom took me over and we got that done.  Came home to find Dad and K out with their bikes and notice that K's is way too small for him.  Well when dad and I were at Walmart in the states we noticed a pretty decent 20" bike over there on sale for $58!  So we decided to pack us all up (mom, dad, K and I) and headed into town to see if we could find a bike for around that price here.  No such luck as the cheapest one here that he liked was $110.  As it was lunch time we ended up going to Dairy Queen to get some lunch (I just got fries as I didn't think I could really eat meat with the state my mouth was in then also got an ice cream sundae which felt really really good!) and then we crossed the border and headed to the other Walmart.  Dad needed to get dog food for his friend again so we went to that section and then decided to split up so I could grab a few things and they could go look at the bikes.  I got a few things (body spray and face cleanser) that we can't get at home then we went to find the boys.  K loved the bike and had already picked out a helmet so we were almost good to go until K asked if he could go to the toys and get something small.  So we split up again this time dad and I and mom with K.  I went to the food section to get some chocolates (Lindt is so much cheaper there!) and into the clothing section and found a zip up sweater / hoodie I liked.  We all met back up again and on our way to the cash register I see a sweater I like better so tried it on (it was a bit more money but $13 is still cheaper than anything here!) and K switched the toy he wanted.  Dad filled the van up with gas and we headed back home.

While we were waiting at customs I was almost in tears I was in so much pain and was starting to get nauseated.  Got home and I went right to get a cold drink to take pain killers (had been taking them all day anyway but took a bit stronger dose now that I was home) and some gravol grabbed some ice packs and went to bed.  I did get a few pictures of K on his new bike first though (will try to figure out pictures on here later) before I crawled into bed.  I had little cat naps and even though I wasn't going to get up for supper, mom went and got a little roasted chicken from the grocery store so I figured I might as well go up and eat.  Woke up again on saturday with still a lot of pain so have been sticking close to some ice packs and keeping up on my pain medications and advil.  Mom had an idea about a product that is actually used to treat sores caused by dentures but that she used to use for toothaches so dad, who was just heading out to the store, took me over to shoppers to look for it.  No such luck and all the toothache remedies and such all were benzocaine (?) can't remember exactly but there were in the 'caine' family which means that they would do absolutly nothing for me.

I once had a (now ex-) friend tell me that I couldn't be in as much pain as I claimed to be in because I was out doing things like shopping or having family time or nephew time.  That is such a lie!  Everyone who has experienced chronic daily pain knows that there are times that you just have to suffer through that pain so you can have some real life moments.  You know that you will be in a lot more pain later, but important life moments always have to come first.  Especially if you have a child in your life.  They are worth so much more than a few extra days of pain.

Friday, March 18, 2011

Blog Changes

Blog Stuff

  1. Well I changed the font type and size on this blog.  I am trying to find a way to make the links stand out better as well as I noticed they don't really 'pop' out at you if your reading the blog.
  2. Still wondering if anyone has any ideas as to where I should put my blog roll.  Or other links for that matter.  I think I will make another 'page' for normal links but not sure if I should put blog ones there.
  3. I updated my "Disorders" page, added another condition as well as some links in the other sections.
  4. If you have any suggestions as to what works or doesn't work or about anything you would like me to answer or include on here, please just leave me a comment on this post :)
Edited on March 19th - I have tried out a different font that I think will be better.  The font that I had up for a few days just seemed hard to read when you got in a big chunk of text, and let's face it, I wrote and ramble a lot!  I hope this font will be easier.  Going to try to figure out a way to put up the font's that I like so people can see the different ones, just no sure it's doable.  Also, I believe I have finally settled on putting all the links on a seperate page, including my BlogRoll as I don't want it to get buried in all the chaos going on in the sidebar and don't think it would get noticed as the footer to the page.  If those who read this blog could send me a link to their blogs and what they want it to appear under and possible a short little blurb about your blog that I could put with the link, that would be great!

Wednesday, March 16, 2011


I had to go get my depo shot yesterday and had an appointment at the bank (my doctor's office is in the same building as the bank).  I went to the dr's office first, with 20 minutes before the appointment and asked if I could get the shot and mentioned that I had surgery last wednesday and still had a lot of pain along the one jaw line and ear area and was concerned that there was the possibility of an infection and that I have been really really dizzy and tired.  Well she told me to go right to the waiting room and they would get me in.  I quickly learned that this would not be a short wait, asked to get the shot because I had an appt at the bank.  She said that was fine and to just come up when the appointment was done.

I went back up and waited maybe 10 minutes before getting back to see the doctor.  There is no infection (some redness of the gums but we figure that is just because I heal slowly) but my eardrum is bulging out because of the swelling going on in the jaw.  He told me to take advil and my pain killers regularly (well the advil regularly, pain meds when needed) and give it some more time and if it doesnt help to contact my dentist about it.

The bank appointment went greaet and I now have things set up where I will actually be able to pay off my VISA instead of just putting the miniumum payment / interest charges on each month!

Friday, March 11, 2011

Post- surgery issues

Just thought I would post how things are going.  My jaw is still a little swollen and I can't open my mouth all the way yet but it's not that painfull anymore (just advil works good).  Had normal supper tonight, just cut in smaller pieces.  Because of the bite not lining up I am having some issues eating and chewing things so sticking to easier foods.  However, the big issue is my blood pressure.  I have been going right from bed (slept 17 hours straight last night!) to the couch upstairs that reclines so I can have my legs in front of me and my head resting on something.  I barely made it through supper and had to go sit/lay back down on the couch.  We got out our blood pressure machine and mine was 98/70 and my pulse was down to 81!  I only took half my dose of atenelol last night and think I may even cut it down some more and just take it once daily until I am feeling better.  Going to call my cardiologist on monday to see what she thinks.  Mom says I am still very very pale so I have just been sitting on the couch and she has been getting me what I need so I don't have to keep getting up and down.  Not sure what's going on with the heart / blood pressure but I would be happy if it figured itself out!!

Wednesday, March 9, 2011

Dental Surgery

Today actually went pretty smoothly with not too many problems.  I am going to write down what I remember but as it is late and I am still kinda 'woozy' I may have to edit this later!

I didn't get to sleep until close to midnight and had my alarm set for 5:15.  Well of course I ended up waking up at 4 and couldn't get back to sleep. They had told me to take my morning dose of atenelol before surgery to help keep my heart rate under control.  Mom came with me to the hospital and we had to wait for the patient registration to open up so we could get registered.  Did all that and was sent up to the Day Surgery Ward to wait some more.  All my papers said that my surgery was to be at 8am.  Well all the people around us were being called and people that came after me were getting called.  Mom went up to the desk and we find out that my surgery was changed and that I was scheduled for 8:50!  I finally got called back at around 7:30ish by myself (mom wasn't allowed to come back) to get changed (they have pants now that you get to wear! If only they weren't one size fits all) and to stuff my clothes in a locker.  Then she went through all the registration stuff - signing consents, going over meds etc. She said that in my notes the doctor had ordered some ELMA cream for my hand for where the IV was going but I said it was pointless as they don't work (so basically my chart says I refused it).  I was sent to another waiting room where mom was able to come with me at that point.  A while later (I didn't look at the time) a doctor came to get me and take me up to the pre-op area.  I am not 100% sure where mom went, they said she could stay there or that there was another waiting room.

We get up to the pre-op area and I get settled into a bed and the doctor was very nice and even though he couldn't find me an extra pillow, he brought over three warmed blankets that I could put under my knee.  It was kinda weird as everyone around me had their IV's put in down in the registration area yet I still did not have one.  I talked to my two nurses, the anesthesiologist (Dr. B - I hate spelling anesthesiologist lol) and my dentist (Dr. M) also came down to talk to me before going under (he is a great dentist, very caring and patient oriented).  Dr. B told me that I didn't need the antibiotic I usually got because I just had mild MVP, if it was more serious than I would need it but that I should be fine.  Also strangely he asked if I had ever been on methadone, I wasn't sure what to think about that.  After another while the took me into the operating room.  I got moved over to the other table and they got me a pillow to put under my legs.  The got the BP cuff on and then Dr. B went to look at my hand for veins.  While looking the nurse told him I had EDS and he goes 'You know that is a pretty common disorder now with all the double-jointed people out there'  I corrected him and told him about just double jointed, HMS and EDS and he seemed interested and said he was going to check that out later.  He got the IV in pretty easily.  Just a bit of digging but only one hole.  When all the medical people were in the room, a nurse read out my allergies, diagnosises and what was going to be done.  Dr. B said something then about not needing an antibiotic but Dr. M said no, that I was to get the antibiotic as 'we don't take chances with her'.  So I got the antibiotic and then was put under.

I wake up in the post-op area and while I was still out-of-it I hear Dr. M telling the nurses that I am to get Toradol if I needed anything for pain (that is what helped most the last time I had dental surgery, the narcotics didn't help the kind of pain I was having in the muscles and jaws).  I woke up on my side with nothing under my pillow. Once I was basically awake they gave me an ice pack and took me to the recovery room (around 11ish).  They checked my BP and stuff and all was good with that, they asked how much pain I was in (I wasn't) and brought me water to drink and told me I needed to keep the IV in for an hour.  They tried to raise the head of my bed but that made me very very nauseated to the point that I had the nurse go and check if I could have something for that and asked her to put my bed flat again.  She came back and said that I could have some gravol but that it would be in a needle and would that be okay.  At that point I didn't care I just wanted to feel better so she came and gave me a shot of gravol in my hip/butt area.  Around this time they brought mom in to wait for me.  Between the horribly sore throat (I could barely talk) and the nausea I just kept lying down with my eyes shut.  The nurse came back to do my last check of my temperature (fine), O2stats (fine), pulse (fine) and BP - which was not fine.  I had my lowest reading of my life!  I was 96/48 and apparently I was pure white, even whiter than mom has ever seen me.  For the first time after sugery the nurse asked if I wanted my mom or the nurse to help my get dressed and told me not to get out of bed until I absolutly had to and then sit right in the wheelchair.  Well I just threw on my hoodie and got my pants on and got in the wheelchair while mom went down to get the car.  All in all we were out of the hospital around noon.

Becasue my throat was so sore (from the breathing tube) I originally asked mom to stop at Timmy's to get me a small ice cap (I has no extractions so I could use a straw and had no real limitations - the nurse just suggested that I eat soft food for at least 24 hours just to make sure the fillings set and because my jaw would probably be sore).  Well after sitting up in the car for 10 minutes I was very nauseated again so we just decided to go straight home.  Mom got me out of the car (we had dad gate the dogs upstairs so they wouldn't jump on me until I got to bed) and I headed down the stairs to get my PJ's on and went straight to bed.  Dad had been calling (since he thought surgery was at 8 he was getting worried) so mom called him back (he was at his friend's place) to let him know we were home.  Mom brought me some chocolate milk as we thought it might be best as it was cold and also would get something slightly more substantial then just water for me to take my pills with.  I got that down pretty quickly and took my normal pills and mom brought down my 'to-do bag' and a glass of water for me.  This was when the dogs were allowed down and Shaggy came right to me to check me out and gave me kisses.  Stranger was Tazzy who jumped right up on the bed and was licking my face like crazy and mom literally had to pick him up to get him off me!  At this point I just crashed and went to sleep (it was around 1 - 1:30)

I slept on and off and finally got out of bed around 6 to go upstairs and take over the couch.  My family had already eaten and mom said that she didn't want to wake me up as I needed the sleep and wanted to know what I would like to eat.  Still dealing with an upset stomach I asked her and she made me some vanilla pudding to eat and I had another full glass of chocolate milk. I took one of my pain killers becasue by that point my jaw and face was really sore.  About an hour later I took a couple Advil as well.  I helped Kyler a bit because he came home tonight to tell us that he had a math quiz tomorrow! (Mom talked to his teacher to find out what it was going to be on and said that he might have problems as I wasn't up to help him and mom was exhausted so she said not to worry and she would keep an eye on him).  At 8 we watched AI and mom got me an ice pack becasue my hand was really sore from the IV and then when I went to remove one of my bandaids (the only safe ones I have found) it really pulled at my skin and was hard to get off.  We had never seen my skin stretch that much!  So I rotated the ice pack on my hand and my jaw.  I had a few mini crueller type of donuts (something soft and sugary as I was so light headed) and a few little pieces of chocolate (again to get the sugar) and a full bottle of Sprite (sugar was my friend).  I went to stand up at one point and basically fell right back on the couch and that was the last time my mom let me get up to get things.  We just watched TV and I took another pain killer around 10:30.  Mom finally went to bed at 11:30 and I came down to my room.  Just sitting here typing this up now.  Still have a sore throat, still have an upset stomach and lightheaded / dizzy.

Oh I did forget to mention that Dr. M called around 7ish to see how I was doing (he was calling from home!) and make sure everything was okay!  Talk about going over and above what's needed.  Mom told him I was doing fine, just sore but that I was taking my pain killers.  She asked if I needed to make a follow-up appointment but he said it wasn't needed unless I had problems.  She said that I have an area where my bite feels off (feels like a poppy seed or something stuck in one tooth so I can't bite all the way down) so he told us to try and leave it for a week to see if it wears down but that if it didn't to just call and they would get me in quickly.  I also forgot to mention (see told you my memory would be sketchy!) that when Dr. M came to see me before surgery he told me that he was doing restorations and he didn't expect to have to remove any but that if he felt it was needed he would.  He also told me that he was going to use silver fillings for the back teeth if they needed a lot of work as he thinks they will hold up better for me (I already chipped a tooth with a filling and had a gap under a filling on one tooth).  I told him that whatever he needed to do was fine as I trusted him.

I mentioned to mom earlier this evening that I wondered if I should have taken the Atenelol (beta blocker, to keep my pulse slower and under control that also lowers your BP) before surgery and wondering if that was the reason my BP went so low afterwards.  We are going to ask my Cardiologist / Internist about that when we see her next.  Just still feeling so horribly lightheaded and 'brain foggy'. 

I think that is it, like I said above I will probably have to come back and edit some of it as I remember things that I forgot to put in.  If I make any changes I will underline the new text so any of my readers (like I have any beside JC and Sarah) don't have to go through this long long post again :)

Tuesday, March 8, 2011

Yes, I know it's only some fillings

Does that mean I can't be nervous about going under yet another general anesthetic?  This is the 7th time in about 10 years.  My body doesn't really like anesthetics and I usually end up not feeling well and in pain for a significant amount of time.  It's not like I am the same as my mom going under a general for a minor procedure.  Yes this is the minorist of minor surgery but I still don't want to have it done!  I would much rather have a local and have it done in the dentist office like normal people but that just does not work.  Not only do local's do absolutly nothing for me (one oral surgeon gave me the maximum legal dose of local at one point and I still felt absolutly everything) but I also appear to be allergic to them as I get really sick following them.  Landed in the emergency room after the last time I had a local as the muscles in my calves contracted so bad and spasmed so bad that I could not walk.  I also had to go on stomach medications because my esophagus decided to send food up instead of working to send food down.  I am a lot more nervous about the IV and have told my mom that her sole job is to get the nurses to take the IV out as soon as possible.  Also going to ask for the 'relaxer' (we assume ativan) that they gave the second last time as the IV was so much easier that time.  Oh well.  We have to be there at 6am and it's a 30 minute drive so I should get off of here soon and get to bed.  Wish me luck!

Sunday, March 6, 2011

My mom

I couldn't get through this life without my mom.  This last week has been eye-opening and pretty pleasant.  Only a few not so good things but the good things are so important to me.  She truly has become my closest friend and my biggest advocate.  Makes things so much easier.  So here are the good and (mildly) bad.

Mom - Good

She really really understands the limitations my knee has been putting me on and the fact that it is damaged (and is accepting that surgery will be needed).  She is the one that reminds me to take my crutch if I don't think I need it, will go and get things out of my room for me if we are upstairs (my room is in the basement) and just letting me rest it as much as possible (letting the dogs in and out etc).  She even broke a rule at K's school!!  The school has a circular drive for the buses to come and go, no cars are to be in that area at all.  Well on friday we were in the middle of an ice storm so mom took us to the school and went through the bus lane to drop me off as she didn't want me even attempting to walk on slippery sidewalks (not to mention the bunch of kids hurrying to get in).  As soon as I got out a teacher came over and started to go on about how that was not permitted and to tell the driver she can't do that etc etc.  I apologized and said that we were here volunteering and I had a messed up knee (I used a crutch too) and mom didn't want chancing it.  Well I told mom about this and she got angry.  There were no buses in the lane at the time or she would have waited until all the buses had left.  When that teacher came in to the bookfair mom went up to her to talk with her (mom does not do confrontations!!!).  She stated why she did it and that she would do it again if she needed to as well.  The teacher did apologize and said we had been the third car to go through and the first driver flipped her off and the second gave her some nasty words as well.  So that was very nice that my mom did what was best for me and went up to the teacher stating that she was doing what had to be done and that she would do it again.  Just trust me that that is a big deal for her.

Getting bloodwork on thursday it was me and two nurses and mom in the clinic.  The one nurse was finding a vein and the phone rang so nurse two answered it.  Well this bloodwork requred three syringes full and we all know that my veins are very sensitive and that the nurse moving even slightly can cause the vein to collapse.  At one point during this, mom stood up and asked if she could do anything to help out.  Then after all that was done, she volunteered to stop at Timmie's to get an Ice Cap (my usual post-bloodwork drink) but I just wanted to get home.  So I get in bed and she comes in with a pop to get me to drink something sugary.  She just seems to get it more lately.  I dont know if its because her hip/lower back/sciatica is bothering her so she sympathizes but it's definitly nice.

Mom - Bad

These aren't really bad even.  I just mentioned that I wondered if the skin issues I have could be signs of the lupus butterfly and she shut me down quickly stating that I don't have lupus.  But I know that is also typical parent not wanting to look at bad things of their kids until they come out 100%.  Also we got news that K is most likely to have ADD.  I would like to get him to a doctor soon to get a real label and suggestions as what to do and also that medications might be needed in K's case.  He is above average intellegence but his grades are quite below average.  My thoughts are that if it helps him then we go for it, she doesnt want to because of K's genetics.  But the same was with me really.  We'll see how it goes.

Saturday, March 5, 2011

My trip to the rheumatologist

That is never a boring trip for us to make :S Even though this appointment was only for medication refills and to discuss what was going on at the knee clinic.  So mom and I figured it would be a pretty routine and uneventful appointment and were going to go do some shopping afterwards.  That, of course, isn't what happened.

I first have to remind everyone that I absolutly love my rheumatologist!  Dr. W has done so much for me in the years since I started seeing him (I think I first went in 2006).  Without him I would still be in a lot of pain and fighting with my GP about pain medications.  I wouldn't know about the osteopenia, wouldn't have got my shoulder issues under control with medications that aren't used for that purpose and just would have had to do a lot more fighting to get tests and things under control.  With Dr.W all I have to do is suggest that I think something is wrong and he goes through everything to try and see what it is that is having the issues.  That is what happend at this appointment.

We go in and talk about about things in general, he asks how things are going and on and on just the normal stuff.  He asks about my shoulders (doing really well with the medication he suggested), the wrists (left one is hurting now but it is also flared up from the crutch) the knee (told him what is happening at the clinic) and then he asks if I have any questions.  So I told him that I thought it was strange that I have been waking up with very swollen hands that last between 30 minutes and an hour before I can really move them.  Well that woke something up in his mind and he had me come over for him to do a full physical exam of my joints.  I hate having doctors play around with my joints but have no qualms about Dr. W doing them.  He is so gentle that I don't hurt afterwards which is very very rare for me, I also know that he is doing the tests because he needs to do them. He isn't just curious so plays with my joints.  He has an idea and needs to feel my joints before he goes further on his idea.  While looking over my arms he asks if I have had a fever as my arms are so warm and then asks 'How long have you had this bump?'.  I had no clue I had a bump so he shows me where it is.  I don't think it is an EDS type of bump as it is not right on the joint but about an inch or so higher than my elbow (towards my wrist).  He goes through all of that and then tells me that I can go sit down again.  He then asks me if my feet swell in the morning and I told him that I honestly didn't know and had never noticed it but have also never looked at it.  I did mention that at the end of the day when I remove my socks I have indents where the tops where (I was told after knee surgery to watch for that as it indicated fluid build-up).  He jokes that he does too but then says (in a more serious tone) I guess I can't compare a young girl like you to an old guy like me.  He sits for a minute or two in silence than goes on with his thought. 

He asks when the last time he ordered bloodwork was and mom and I thought about it and realized he has never ordered bloodwork for me.  He goes "You have to be my only patient that can say that, but you won't be able to say that in a few hours".   He aks us (well mom really) if there is any history of Lupus in the family (there isn't) and then he asks me if there is a link between EDS and autoimmune disorders and I state that their is a higher likely hood that we would have them and they suggested routine (like every few years) testing to check for them.  He then states that he believes I have an autoimmune disorder but that he doesn't know which one so he is going to order bloodwork.  He gets the sheet out and starts just writing down different tests: Rheumatoid Factor, ANA, anti-DNA, anti-ENA, and some other names that I can't remember that were for autoimmune purposes, as well as liver and kidney function tests and the normal CBC type stuff.  Not only that but he kinda spooked me as he wants me back in two weeks to discuss the results.  I generally have only ever seen him every 3 months unless a problem has come about and I have to make an emergency appointment. 

After all of this I still had a few questions about the normal appointment to get out while my mind is going crazy with thinking of the outcome of all these tests.  I tell him that I have been taking breakthrough meds once or twice a day since I hurt my knee and should I be upping my long-acting one to reduce the number of breakthrough meds or is it okay to keep doing what I am doing.  He said since the breakthrough meds are working that I should just continue what I am doing since we do have a hard time finding the right balance, but when they start to stop working to come back to him and we will switch things up.  I also asked him if it was okay that if I took one dose and then an hour later I was still in pain, was it okay to take another dose.  He told me that he has no worries about me and that I am very 'sensible' with my meds and that doing a dose after one that didn't work was perfectly okay because I knew myself and my meds.  (That was nice to hear!).  When he went to write up perscriptions I mentioned that the amount he normally gives me for 3 months wasn't lasting as long because of the knee so he goes well I will give you 'X' amount then which I said was fine. Then he wrote it out as that amount per month so I am getting like 4 times my normal 3 month amount.  He then states that he knows its a big amount and that I will have lots remaining at our 3 month check-up but that he knows I am sensible with my meds and only take them when needed and that he just wants to make sure that I don't run out.  All in all it was a pretty great visit.  The only bad thing was that he mentioned he was probably going to retire in 2 years as he was 74 but that he enjoyed it so much that he wasn't sure.  (Mom and I would have pegged his age around 80!)

So we make a follow-up appointment for the 21st and headed out.  Mom asked if I wanted to get the bloodwork done today and we agreed that it was needed to be done that day.  That was thursday and on friday and monday I was working at Kyler's school with the bookfair and then on wednesday was going in for surgery (didn't want to use up a vein from bloodwork the day before).  The only bad thing about it was I had already had bloodwork two days prior.  Anyways we forgo the shopping trip and head home to get bloodwork done (the lab that is open in town doesnt use butterfly needles so I like to go to our small clinic in my hometown).  I go in and the nurses (can't spell phlembologists so I am going to go with nurses, hope that isn't a bad thing) immediatly recognize me and are kinda nervous and I didn't know why.  Well after they figure out that they can actually do all the tests (they can't do frozen ones there) I find out why.  They needed six FULL vials of blood.  Not that bad except that the only place and way they can get blood is with a butterfly needle on the top of my hand between knuckles, and the fact that I already had my right hand done on tuesday reduced the locations for veins in half.  Amazingly they were able to get the three full syringes out of my hand (normally we only need one syringe of blood so we needed three times as much as normal).  Becasue of the amount they make me sit for a while before getting up and then let me go home.  The nurse even told my mom to take me home and put me to bed for a while ;)

So we get home, I open a pop and have some of it (sugar sometimes helps) and then I crash in bed.  It was my night to go to karate with Kyler but I just couldn't make it and stayed home and stuck to the couch where I slept on and off too.  When mom and Kyler got home they had brought me a treat (they had to stop at Shoppers in town for a few things) of a Lindt Lindor White Chocolate (amazing!!).  We watched Idol and an episode of Buffy (I bought all the seasons so we are watching through them, we are on Season Three, Disc Four now) then I went downstairs and went to bed as mom and I were helping out at Kyler's bookfair the next day (Ill post that next).

So all in all I had been wondering about Sjorgrens as a possible to some of my issues and was going to ask my internist to run the tests.  Well my rheumy has beaten her to the punch and ordered all those tests and more in his search for what autoimmune thing is going on (seems he is leaning towards Lupus)

Tuesday, March 1, 2011

Long and informative day

First Appointment:
The first appointment of the day (at 9:30 this morning) was with Dr. B (GP) about getting cleared for surgery next week.  Got in pretty quickly as it was one of the first slots of the day.  I did ask whether they had the results of the CT scan or any reports from the knee clinic but they had no record of it at all so I will have to call the clinic tomorrow and give them the correct fax number (they did this last time too, Dr. B is one of 3 or 4 doctors from the same family and same last name).  The nurse got my meds updated, did the normal weight (horrible!! have to work on that big time but it's so hard when over half your pills cause weight gain, not a big deal if you are on one or two but I am on about 5 of such medications), blood pressure and pulse thing.  I get in to the dr and he for once goes thourough and even prints out the last report from Dr. C (Internist) to put along with it and then cleared me for surgery and wished me luck.  I found out while waiting for my dad to pick me up (I can't drive because of the knee) and when I looked at said report it states that I have 'Significant Autonomic Dysfunction' with odd presentation and that we are going for symptom control above anything else.  Also it states that I have Mitral Valve Prolapse, which is news to me.  My old cardiologist kept changing his mind as to if I had it, had the start of it, didn't have whatever pleased him on that date.  So it's good to know that I actually do have MVP, I mean I don't like having it and wish I didn't but at least I now know that I do so the pre-op antibiotics are required now and not just suggested.

Mom and I had to pick up a few things in town before my second appointment of the day so we headed over to the pet store to get the dog's dry food and then we headed to good old Walmart. We grabbed a quick lunch at McD's and then I had to get dog food and treats and wanted to get a new book to read, even though I have a basic library I just wanted to get something new and knew that one of the authors I like had a book coming out today.  I ended up getting three books so I will have lots to read!  We left there around 1:15 and headed to the hospital.

Second Appointment:
Of course I didn't use my crutch while shopping as my knee didn't feel too bad but by the time we got to the hospital mom suggested that I should use my crutch cause there might be a bunch of walking to do.  We get in and I go through there new and 'streamlined' *sarcasm* and then got up to the pre-admission clinic where I handed in my paperwork and then we waited.  My appointment was for 1:45 and I didn't get in to see anyone until around 2:30!  She goes over all the tests (weight, BP, pulse etc) then we go in and discuss the surgery (what is to be done, consent, pre and post op instructions etc).  The one thing that is interesting is that they want me to take my beta blocker before the surgery (at 6am) instead of waiting off until my normal time (11am) as it will help to keep my heart rate under control.  This is the first time that this has been done or even mentioned.  I found out that my surgery will be at 8am and that I need to be at the hospital for 6am.  We haven't decided whether my mom or my dad will be going, just as long as someone goes I am okay about it.  I then get shipped off back downstairs for testing.

The part of the day that I was just dreading as I hate getting bloodwork taken.  I get called in and they did an EKG first and that was nice as the nurse doing it was very cautious of my leg wanting to know if I needed a pillow and to tell me when I was in a comfortable position before she would put the sensors on.  Of course she asked what I was having done (seemed strange going in for dental while I am hobbling around on crutches lol) and then she asked what I had done to my knee.  I informed her about EDS and told her that the MCL, LCL and ACL are all loose so they need to do some tightening.  She then goes 'Won't it just all loosen up again and then surgery needed again?' thats more thought than most doctor's don't even pay attention to.  After that she had me go wait in the chairs to get bloodwork done.  I get in for that and tell the lady that I am a tricky patient and then say that I am not trying to do her job or tell her what to do, it's just that you have to use a butterfly in the veins on the top of my hand to get anything.  She got it quite easily and it didn't take very long at all.  Mom was surprised I was out so quick and she didn't even know about the EKG being done. 

We get home and I was ready to crash I was so tired and dizzy but I needed to help K with his math homework and have supper. By that time though I was wide awake again and a nap just wasn't going to happen!  I did almost fall asleep during American Idol though but made it through that and Parenthood before retreating to my room but, again, I am wide awake sitting here with not much to do. So that was my busy day.  Can't wait to get this surgery over with and get back on our normal schedule (not as many appointments to go to!)