Wednesday, December 29, 2010

Pretty Good Day --->>> VERY bad night

Or how my stubborness and pride is a bad think. I had wanted to get into town to do some boxing day shopping.  I had got money for my birthday and was hoping to get a few games for my Wii in my room so I would have something to play.  I also wanted to look around and find any good deals like normal.  Well with my knee being the way it is we put it off again and again until I decided on tuesday night that we should try shopping the next day.  So this morning we got up early, I found my crutch and off we (mom, K and I) went.

First stop was at Blockbuster to see if they had any good used games or movies.  I was still getting used to the crutch and was having issues with my purse (I sling it over my right shoulder so it sits at my left hip, I was using the crutch on my left side).  I did find a game that I wouldnt mind getting but decided to wait on it as we were goign to go to the used game store.  So we went to Game Stop next.  At this store I discovered that I could not reach up or down at all so mom had to help me.  K got a great deal and got two Wii games (Battillion Wars 2 and Godzilla Unleashed) for $45 and I bought a DS game (Logic Machines) for $15.  Again saw two games that I wouldnt have minded but as the one was an exercise type of game and I couldnt use it and the other wasn't the one I was looking for, I decided to wait and see if I could find the one I wanted.

Next stop was Walmart.  I had to get a drink at this point as I had such a dry mouth.  We went over and I tried the electic scooter that they had but I had to slightly have my knee bent (can't do that yet) and I guess pride set in as I saw people walk by and stare at me so I decided not to use it (A choice I very much regretted later).  Instead I pushed the cart and we put the crutch in it in case I needed it.  We walked around Walmart for quite a while with all three of us looking for specific items as well as good deals.  I ended up buying some half off Christmas chocolates, a half off bath set ($4.50 for 5 bottles - shower gel, body cream, body mist, band lotion and lip gloss in 'cherry blossom') and then got a great deal when I am across both seasons of "Eli Stone".  Mom and I had watched most of the first season but missed the second and they were on sale for only $12 each (and then they rang through the check-out at only $10 each) so I used the gift card my nan had given me for Christmas for those (I like being able to tell her what I got with the money she gives me).  They didnt have either video game I was looking for there either.  K ended up buying 2 beyblades and mom ended up with a cart full of stuff!  Mom and I paid for our stuff and she took it out to the van while I helped K buy his stuff and we waited at McD's for lunch.  Had a quick lunch and I was able to rest my knee for a while which was good.

Next stop was Future Shop as dad wanted us to find "E.T." as our old VHS copy did not work and he watned K to see it.  I wanted to look for Wii games there as well but there was very little selection so I went over to the movie side with mom.  She found the DVD and then in the center aisle was a rack with different seasons of "The Simpsons" for only $15 a season.  K likes the show now and it's something I have always liked so we decided that we would each get a season.  K grabbed #6 and I grabbed #7 and then decided that at that price I might as well get another so picked up #8 as well ( I already own #1).  So we head to the check out and I notice a bin of CD's that were 75% off.  Leona Lewis' "Echo" was in there so I picked it up and asked if it was 75% off the price that was on it and she said yes.  Somehow the cashier ended up charging me like $5 for the CD and $10 each for the DVD's so I was glad that I had picked up two! (She did notice that they went through at $10 and not $15 and mentioned that it took the discount off the DVD's instead of the CD but that it didnt really matter).

Next was Bulk Barn as mom needed to get some mixed nuts to make bits and bites and to get some dog bones.  K and I waited in the car for this stop.  Next we headed to Shoppers to see if any of their video game stuff was on sale but they were sold out of almost everything.  I did get a few things of Lindt chocolate though for half price.  We then went back to Game Stop as I decided that I would get the game that I was looking at ("My Sims: Secret Agent") so I would have something I could play.  Mom went in to get it as I just couldnt walk anymore.

On the way home mom suggested we do my birthday supper (Chinese) that night but I asked if we could do it tomorrow as my knee was hurting so bad that I was nauseas and I just wanted to sleep.  We dropped K off and headed to our local Shoppers as I had to get a perscription figured out.  I was looking in the pain med aisle and was wondering if there was a muscle relaxant that didn't have the 'fillers' (advil, tylenol or asprin) in it as I am having muscle spasms in my knee but cant take tylenol or asprin and dont want to take much more advil as it's already making my joints 'slippery'.  I went to ask the pharmasist and he was great!  He brought down a few bottles of just a plain muscle relaxant, asked why I wanted it and not a combo and then asked how many pills I wanted.  He had a bottle with 4 in it or a new bottle with 50 and said they sell it by the pill!  I got the 4 and he charged my like $3.  I havent tried it yet but probably will end up tomorrow.  Finally we went to Food Land to pick up a few items then home so I could crash.  I stayed up for about 30 minutes then just had to go to bed.

When I went to sleep I had one of the bad pressure headaches and when I woke up around 7 it was 10 times worse.  It was one of the headaches that you had to stay still.  Whatever side you were lying on was the side that hurt the worst.  Add to that the 'next day' side effects of severe muscle spasms in my back hit around 8 and that my knee was really mad at all I had done that day and I was in agony.  I know I was very grumpy and snapped at people, ended up in tears at one point and for most of the evening I had a heating pad on my back, an ice pack in the curve between your neck and head and an ice pack on my knee.  Around 11 I just gave up, took some pain killers and tried to go to bed.  I ended up having to take some asprin/codiene/caffine pills in order to be able to sleep (I am not sure if its the codeine or caffiene that helps them but they do and if I am taking them to go to bed I can put up with the side effects the asprine 'allergy' gives me).

So good day but horrible horrible night :(  (BTW I am writing this up on the 30th but putting the post date as the 29th to keep the dates proper)

Monday, December 27, 2010

Happy Birthday to me :) (& My munchkin - K)

Well I turn 29 today which isnt too bad, the scarey thing is that K turns 9!!!  I can't believe he is getting so old.  I still have clear memories from when I was his age, so that means he is going to remember things he does now for the rest of his life which is just so amazing to think about.  I have always thought that it was cool that he was born on my 20th birthday.  Everyone always jokes that he was my birthday present, but you know what?  He has been the best birthday present I have ever gotten.  I can't even imagine not having him around, or for me to live far away from him and not see him every day.  He had a lot of chaos in his early years (my parents got custody when he was 15 months old) but now knows nothing except stability and love.  Anyways.... :S

Didnt sleep well last night, figure it was the heat from the water bed as I woke up and my knee was the most swollen it has been in many many years (talking immideate post-surgery here!).  Mom woke me up around 10 so K could come down and open his presents.  Mom and Dad got him a bunch of 'Dragon Universe' toys (all the 6 dragon / fighter combos and one of the attack ships) and a couple of model tanks for him to build (he has really got into that hobby of building models with dad which is really cool).  However, I think I stole the show yet again, what can I say, I know what my munchkin wants lol.  I got him DJ Hero for the Wii.  He opened it up, his eyes widened and he got the goofiest grin on his face then looked at me so surprised, it was great!  As usual as I am so hard to buy for my parents gave me some money to buy something for myself.  Mom even told me that I am to go out and buy whatever I want and not feel guilty about it lol.  I feel guilty buying myself 'fun' things with the amount of debt I have (which really is very low for my age bracket!) so now I can do something guilt free.  I will probably get a few Wii games as I have my eye on a few that I would like.  After we did the presents mom told me that I should go put some ice on my knee again and lie down until our company came.

I woke back up around 2 and played around on the computer.  I had a dilema getting dressed as I should have had a shower but was not going to risk getting in a slippery shower with the way my knee was and the warm water would have just made my knee swell even worse.  I also couldnt put any of my pants on so ended up with my nice new argyle sweater, butterfly necklace and.... yoga pants :S  Our company was a family who K is close to the two boys in and the family has been going through a really tough time with their kids and my parents have been there for them and at this point, they only have the kids for a few days so mom and dad thought it would be nice to invite the whole family down (the parents, a boy in grade 5, a boy in grade 3 and a girl in grade 2).  They came down, us adults talked while the kids played and then mom went to get some KFC for supper then we had birthday cakes (chocolate cake with white icing for K and cookie dough and vanilla soft serve ice cream for me).  The adults went home shortly after supper and the kids stayed playing until 8.

Okay, I will admit that I had a bit of a breakdown again today.  Dad was going to the store and I asked him if he could get a movie so he suggested I get dressed and come with him !?!?  I got really mad because one minute he is asking if I want to go the the ER and the next minute he is wanting me to do things that I shouldnt be doing as I literally cant do it without a lot of pain.  He left and I got mad and headed to my room.  Then I  managed to spill my tea in my room and mom came down and chastised me for cleaning it up myself and that I should have called her to help me.  I blurted out that I hated calling people to help.  She then said she was going to the store to get some ice so we could hook up my ice machine.  I heard mom and dad talking upstairs and I am pretty sure it was about me.  I came upstairs before dad left and I can't remember what happened but mom joked to dad that I was depressed and upset about my knee and that at least when I hurt my wrist I could still walk and do things.  So I guess she really does get it now.  We watched 'Grown Ups' later and if I even looked like i was going to get up she got up and asked what I had wanted. 

The strangest thing about all of this is Shaggy!  Usually he gets really anti-social and overly protective of me when I am hurt and won't let people near me.  The parents of the kids were here and Shaggy kept going over to the man for scratches and pets!!  Shaggy doesnt go near men very often, we strongly believe he was abused by a man so the fact that he stuck to the dad like glue was just amazing!  He was so well behaved and social which is usually not Shaggy.  Also he has been acting weird with me too.  If I am up walking or doing something he jumps up and pushes on my back.  He will keep doing this, even scratching a bit at me until I sit down and as soon as I sit down he settles down and goes off to do his own thing.  Mom and I are strongly believing that he knows I shouldnt be walking and wants me to get sitting down where I am 'safe' and not in pain.  He is an amazing dog, I also dont know what I would do without him.

How ironic is that!  I just finished this post exactly 29 years to the minute from when I was born.

Sunday, December 26, 2010

Home and still in pain and grumpy

I hate relying on others.  Absolutly hate it, but I dont have that option right now :(  Obviously with my knee we didn't do any boxing day shopping so came home early.  Pretty uneventfull trip.  Took a while for me to find an even slightly comfortable position (I was in the front seat of the truck and had to keep my leg as straight as I could as any bending hurts) and then tried to stay there as much as possible.  I did manage to sleep for a great deal of the trip home so that made it easier.  I called the kennel soon after we left to find out of we could pick up the dogs this afternoon instead of tomorrow morning and they said it was okay.

We got home around 2 and I headed straight down to bed as I couldnt help unload the truck, my knee was killing me and I was still exhausted.  I woke up around 3:45 as we were supposed to pick the dogs up around 4, however my parents made the decision that they would go out and pick up the dogs and I would stay home with K and just stay off of my leg and keep icing it.  The dogs got home and Tazzy went nuts lol.  He has so much energy and gets so excited.  Shaggy snubs me though, he ignores me for a while until he thinks it is enough then comes to suck up with me.  However, I threw a wrench in his plans when I got up and limped to the bathroom and he quickly followed me and stuck to me like glue from then on.  Mom went out and got supper (stores were closed and we had nothing in the house so had to get take out) and after supper and tea I settled back on to the couch to watch some TV.  I got up at one point to get something and Shag's followed me and then when I stood there talking to mom and he kept jumping up at me and gently pushing me.  I kept telling him to stop it until mom speaks up and tells me that Shaggy is trying to get me to go sit down!  I went back to the couch, he jumped up on the couch beside me and went to sleep.  He is such a great dog!! 

Watched TV for quite a while as there was nothing to do (and nothing really on TV) with Tazzy curled up on my lap, Shaggy going around the living room to different spots to sleep.  At one point Taz and Shags ended up sleeping on the same blanket right next to each other and touching.  Came down to my room around 11 and realized that I couldnt sit on my couch to watch TV / play on the computer as I didnt have anywhere to put my leg, so had to move everything back over to my bed like I used to do.  Mom helped me wrap up K's birthday presents.  I almst was in tears at one point this night as mom was so tired and had a sore back but I needed ice packs and stuff.  I hate being dependant on someone, especialy someone who is so tired and feeling worn down so almost ended up in tears.  I am just so concerned that I have really done something to me knee and if I don't let it have as much time as it needs to heal so I don't make things worse.  Anyways I'll end it here as I have a few things left to do before bed and we have people coming over around 3:30 tomorrow for our birthday 'party' (K has two good friends that are brothers havent been around the last few months that he has really missed so they, as well as their sister and parents) for KFC, an ice cream cake from Dairy Queen (mine) and cake (K)

Fun Fact: K was born on my 20th birthday :D.  Weird Fact: My paternal grandma was born on August 27th, 8 months later her first born (my dad) was born on April 27th, 8 months later his first born (me) was born on December 27th and then K (first of his generation) was also born on December 27th.  So we have 4 generations all born within exactly 4 months of each other. Creepy Fact: I was born at 11:46pm on December 27th and was born at 29 weeks, so very very premature.  K was due around the 20th but was born a week late on December 27th.

Saturday, December 25, 2010

Happy, yet still annoyed

I could not get sleep last night with the pain and my knee felt like it was boiling hot!  I kept it up on a few pillows so it would be raised but finally got to sleep around 1ish. Woke up at 5ish and couldn’t get to sleep so I played around with my phone then got back to sleep. K woke me up around 6:30 but I was able to get him to go back to sleep until 7:30 when we got up and headed to the living room.  Well Santa didn’t come to this house because the entire family was getting together at another place.  Around 8 we all went over there to get things started.  K and I went in our PJ’s (I couldn’t wear my jeans or cords as my knee was so swollen and tender) and we got our seats then we all started in on our stockings. 

Little tidbit here, Santa still brings me a stocking because I have no children and I am not married.  Once you have kids or get married Santa no longer brings you gifts.  K and I both got LOTS of chocolates in our stockings and other fun little things (soap pouf thing, hair elastics, fuzzy socks etc).  Around 9 my aunt and her ‘husband/fiancĂ©/boyfriend’ came in and we started opening presents.  It was nice this year as the kids are older (9(K), 10(D2) and 13(D1)) so we were able to have them open one present at a time so everyone could see what they got, for the most part at least.  K of course was very spoiled ;) Some hotwheel builder sets, U-build Mousetrap, Yugio game, some Wii games and lots more.  I (being the only ‘real’ aunt) spoiled him with some cool books, lego star wars book, Bionicle set and the main gift for him was his own real camcorder (cheap version of course but more than enough for him and he loves it!).  We also got two joint gifts from Santa – Epic Mickey for the Wii and the Harry Potter Lego Board Game which we are going to try out tomorrow when we get home.  Personally I got all 3 Twilight movies on Blu-Ray, a ‘start-up kit’ for my wii (with component cables, wireless sensor bar and induction charging station!), a Vampire Diaries book, the latest Professor Layton game for the DS, and my favourite – Michael Jackson’s “Vision”: all the music video’s he has ever done including the duets he has done! (I am a HUGE MJ fan!).  Of course we also got dad’s gift early / late depending on how you look at it.  He paid half of the amount for mom and I to go see “Michael Jackson: The Immortal World Tour - Cirque du Soliel” that I bought a few months ago but that we don’t go to see until October of next year.  Then dad surprised us by also getting us a hotel room for the night of the concert since it is being held in a town about an hour away from us so that will make it nice as well. 

Okay, enough about presents – did I mention K LOVED his camcorder? lol I swear, once I showed him how to use it, he had it going 85% of the day. Taping him playing games with his cousin, our very exciting game of ‘Trivial Pursuit: Family Edition (TP from here on)’ (an entire 17 minute video lol).  After doing the presents we came back to my Nan’s place for breakfast.  Unfortunately my knee is still pretty bad so I took over the recliner again for the majority of the day :(.  We had breakfast (bacon, eggs and toast) then everyone kinda drifted into groups: The men in the living room watching TV, most of the women getting all the vegetables and supper stuff prepared and the kids playing with K’s new nerf-like guns.  After a bit D2 wanted to play his new TP game that we had got him so my aunt played, my cousin and D2 were a team (for a bit until my cousin could not stop falling asleep – separate issue), D1 and K and I as a team.  It’s nice as it had separate questions for adults and kids.  We couldn’t decide whether D1 should have adult or kid but gave him kid cards anyways.  Not much happened after that, supper started to get ready, the kids were playing and I went into the living room with most of the guys and we watched some of a “The Big Bang Theory’ marathon that was on.  Supper went well, lots of good food - my favourite still is Nan’s jello!  She makes up orange jello and puts mandarin orange slices in it and then lets it set, there were a good few years that only Nan and I ate any of it but she still makes it.  More of the in-laws are starting to eat it now but it still basically is made up for me (yes I know I am a suck, I am the youngest and only un-married and childless of my generation).

After supper we basically just got everything cleaned up (a big job when you have 10 adults, 3 kids and a very small townhouse kitchen!) and then just sat around talking and continuing to watch “TBBT”.  D1 and my cousin’s husband (so his uncle) went over to his place to play another game of TP than my aunt and her guy left to go home. D2 and his parents went home not that long after that and we just sat around talking some more and mainly watching TBBT. My other cousin decided to go home as well around 8 so dad suggested that we watch K’s new movie – “Despicable Me” (we being my parents, K, Nan and myself which was nice to spend some time just us and her) and even though I had already seen it before, it’s still hilarious.  After the movie K came / went to ‘our’ bedroom and started to watch his other new movie ‘Home Alone’ (got him all 4 of the movies in a box set), and dad watched ‘Transformers’ on TV.  Of course, the topic of conversations changed to the topic it always changes to so that was pretty crappy as I really don’t like that topic as the people up here love to complain about it but have made absolutely no steps at all to try and help it, even in the very slightest of ways.  You can only tell a person the same thing so many times before you just don’t want to get in to it again because you have told them all they need to know and the wont act on any of it.  Did get quite a few good points into my Nan though and I really hope she remembers them and passes along some of the information to the person / people who need to hear it.  Nan doesn’t know what to do but after all the talking we did I tried telling her and I really hope that she listened to it, but she is doing the exact right thing that she should be doing.  We know she can’t do certain things even when those things are hurting someone in the long run, but she has modified those things to do them the proper way (wow how convoluted was that sentence!).  By this point it was midnight so all the ‘adults’ and K went to sleep.

I of course can’t sleep.  I am in a lot of pain and it really, really sucks.  I feel horrible because most of the time I have had to ask my mom or someone else to get things for me because I really don’t want to walk too much on my leg.  I even apologized to mom today and later told her that in all honesty, if we were at home right now I would be using my crutches.  I let an extra hour go between doses of Robax (muscle relaxer & anti-inflam) and Advil (to take my Advil dose up to the equivalent of 2 extra strength pills) and I felt it.  I even started getting sweaty because of it!  The good thing about this weekend is that we are seeing just how my pain levels are actually affecting my autonomic issues!  If I get lots of pain I start getting sweaty (in my autonomic ‘areas’, not in the normal areas where you sweat when you are hot) and feeling lightheaded.  I had planned on going to do some boxing day shopping tomorrow and then we were going to drive home in the afternoon but lucky me, I can’t walk and I sure as hell aren’t going to huge stores to get pushed around by lots of people when my knee is this unsteady. 

Instead the tentative plan is that mom and I will go in on Monday (the 27th) to do some shopping at Walmart and I can get one of the motorized scooters to get around.  I really just want to look at the electronics so it’s not like we will be there long.  We will then pick up my ice cream cake (cookie dough blizzard on top, crunchy fudge layer than vanilla soft serve on the bottom) at dairy queen, pick up K’s birthday cake (chocolate cake with white frosting with yellow trim and red lettering) at the local grocery store and get home.  Oh, before we even go to town we have to go and pick up our puppies :D  We put them in a kennel this time (which I didn’t really like...) as there are already enough animals up here and we didn’t need two other dogs under foot.  Besides Tazzy is psycho and massively hyper and Shaggy doesn’t really like it up here with all the chaos going around and he did bite D2 once (when he was in the back bedroom with me lying down and D2 came charging in the door yelling and Shaggy went to protect me and ended up biting him in the back.  I know Shaggy was bad but I mean honestly D2 shouldn’t have barged in on me like that, Shaggy is very protective of me especially if I am tired or hurt and there was no reason for D2 to come in, we were in the back room so I could keep Shags away from the kids, anyways that is enough, a bit of a sore spot with me!). 

It should be interesting though as Shaggy is so protective of me and I managed to hurt myself pretty badly when he wasn’t around.  Usually if I get hurt he is right there in an instant before anyone else even notices and he has been known to ‘herd’ people away from me if I am hurt (like when I first got him and dislocated my wrist he made himself into a barrier to keep my dad away from me as he didn’t realize that dad was coming to wrap up my wrist).  I am keeping my fingers crossed that I haven’t don’t damage to my knee.  This may sound crazy but I am not totally sure which way my knee actually dislocated, like if it was medially or laterally.  There is a lot of swelling on the medial side, there is some on the lateral side but not nearly as bad as on the medial (keep in mind that 95% of the time I don’t swell after all with an injury).  Either way I just really hope I didn’t mess up the surgeries from 2002!  When we get home tomorrow I will probably get my old ice machine out and probably at least one crutch and try to just stay non-weight bearing on that leg, or at the least only partial weight bearing through that leg.  Problem then is that I am falling apart and have a bad left wrist and right shoulder, left ankle and him and the currently messed up right knee.  I can’t think of any situation where something else isn’t going to have to pay for the damage I did to my knee.  Well it is going to be a very long trip home tomorrow as my knee is okay as long as I keep it flat and mostly straight out but I have to get in to the truck and sit there for 3.5+ hours!

Friday, December 24, 2010

Angry & Upset

I am very, very mad at my body right now!  I twisted my left ankle last Monday so was hobbling around on it, then fell up the stairs on Wednesday twisting the left ankle again and aggravating my left wrist.  I was upset about this but figured it wasn't that big of deal.  We got everything all packed up and ready to go to Owen Sound for Christmas and left this morning.  Because of potentially bad weather we took the truck instead of the van for the trip (3.5 hours).  We got to Reese's Corners and then it happened.  Mom and I went in and got some donuts and drinks and came back out to the truck and got in.

While getting in, and turning to hand something back (really not sure what happened) I managed to slam my right knee right into the dashboard and got it to dislocate / sublux out of place. 'Thankfully' it went right back in but I was in agony.  I took anti-inflams, muscle relaxer and pain killers right away before the pain really set in but it was bad.  Dad asked if I wanted to go to the hospital to get it looked at but I didn't want to mess up the trip and in reality there was nothing the hospital could do for me that I wasn’t already doing.  A little down the road dad pulled over and we got an ice pack out of the bed of the truck and I used an ace bandage to wrap it around my leg (had to put it in one of my socks because it was so cold) - I was very resourceful!

I hobbled out to get to the bathroom in Kincardin where we stopped for lunch and by the time I got back to the car I was nauseated and in lots of pain again.  Right when we got to the far side in Owen Sound, my pain meds were running out so I was feeling pretty rough and I guess I got pretty pale and looked like I was in pain and dad asked again if I wanted him to take me to the hospital and I said no, that there was no way you could even pay me to go to this particular hospital! We got to my Nan's place and I took over her recliner and basically stayed there the entire evening.  I sat at the table to eat supper but near the end I was having too many muscle spasms so I had dessert in her recliner. I have just been icing it and keeping up to time with the muscle relaxers (only time I use these meds is after dislocations to try and keep the spasms away) anti-inflams (fair bit of swelling laterally but pretty bad medially) and pain killers.  I did make a mistake and didn't take the muscle relaxers around my supper dose so that is probably why the spasms got out of hand then.

Tomorrow is Christmas and we are going to my cousin's place which is right across the small driveway / parking area in the townhouse complex.  I can't bend my knee much and its generally okay as long as I keep it straight.  We are cramming 13 people into a small townhouse living room tomorrow for gifts and I have no clue as to where I am going to sit to be able and keep it 'settled'. 

Well it's going to be a rough night and getting up early isn’t going to be fun (as well as being in a very hostile environment the entire day with all the family so I better go and try to get as much sleep as I can!

Merry Christmas  :)

Tuesday, December 21, 2010

Osteoarthritis Study - Update

Well I guess that should say "OA Study - Rejected".  As I thought, this study was for people that were between 40 and 80 years of age.  What annoys me is that I talked to 'L' to set up the study, talked to the office twice (to ask for L and when the appoointment had to be cancelled becasue of bad weather), talked to L again to reschedule the appointment and then she called again yesterday.  She says that she was just wondering because I sounded really young on the phone, she wondered how old I was.  I told her I would be 29 in a week and she goes 'Oh, well this is for people over 40, I thought [rheumy] knew about that.  You don't need to come in now as we can't do anything for you'.

Well that just sucks.  I had a feeling that this is how it was going to turn out but I am getting really sick of things not working out.  My rheumy had hoped that this study would help my over all pain levels and help my joints.  Now we are basically working on nothing.  I am on pain killers and that is about it for treatment.  My left wrist is I fear beyond saving at this point.  He has already said that I have carpel tunnel and probably nerve involvment up my arm and that it is very unstable.  That's it on the wrist.  The shoulder he wanted me to wear a neck collar for a few weeks to rule out that it isnt a neck issue. Well I can't keep the collar on as it hurts and casues muscle spasms in my entire upper body.  So nothing going on with the shoulder either.  The left ankle and right knee have been xrayed and MRIed with nothing major showing up so nothing is happening with those joints either.  Then the hips are getting really bad but as I have so many other joints in 'limbo' I dont want to bring up any more.  I am just getting so frustrated!!  I hear about others that are going to surgery, doing this treatment, trying this medication, using this brace etc and I am stuck doing nothing.  I love my rheumy and he tries his best but I just want something done.  At this point if a surgeon walked in and said he could do an operation on my [left ankle, right knee, left wrist, hips, right shoulder] that had a 50-50 chance of making it better, I would jump at the chance.  I just can not sit here at almost 29 and be told that there is nothing that can be done.  I dont want to live this way for the rest of my life, I want at least something tried.  I dont care if it doesnt work, at least something would have been tried and who knows, might make things better.  I am also in limbo about the autonomic issues stuck between dr's and specialist that dont know what to do.  I just want something done!!!!

Thursday, December 16, 2010


Well I didn't actually get in to see my doctor.  We aren't sure what  really happened.  We thought that I was taking mom's appointment with Dr. B but I get there and they have her chart out and not mine.  Get that sorted out and I go to sit and wait.  I am then called by a lady I have never met and taken to Dr. H's side of the office and the lady introduces herself as the Nurse Practioner.  She goes through all the normal stuff at appointments, asks my symptoms, listen's to my heart, takes my bp and pulse then listens to my lungs.  Surprise surprise I have an infection!  I have just taken my first day's worth of my Z-pack and am hoping to feel better sooner rather than later!  Mom now has to call the office to see if she is supposed to take my appointment next week with the NP or if she is to reschedule her appointment with Dr. B for the new year.

Monday, December 13, 2010

Dr's office crap

So, I have been fighting this cold for about two weeks now and it has finally taken hold.  Dad has already done a 10 dose of levaquin (yes I know a no-no for EDSers but we don't think he actually has it) and K hasnt been to school in over a week (and now with the snow, its debatable as to when he will get back.) and mom has been on cold meds for a week as well.  I honestly have no clue how I have been able to fight this off so well!  I dont know if its getting the autonomic issues kind of settled down, pain levels being resolved after high pain levels for a month or just the handful of vitamins I take each day. 

So today I finally call my GP's office. She said the NP could see me.... next wednesday and that she wasn't sure if the GP could fit me in before Christmas!!  As a note, it has been my GP that states that for some reason, I am pretty badly immunocompromized.  I get flu shots the day they come out (where most have to wait 2 weeks for all the potentially serious patients to get theirs) and he refuses to give me that chicken pox vaccine as he is afraid it would land me in the hospital (as a side note he figures I will be in the hospital when I get chicken pox, but if for some reason I don't catch it natually I wont be at a risk for shingles).  He doesn't even start on the little antibiotics, last year during the H1N1 scare he put me straight on Tamiflu when I presented with flu symptoms instead of waiting for testing.  The lowest grade antibiotic we use is the z-pack.  The whole office nows me (been my dr since I was 3) so they all know of my potentially serious health issues.  Oh I guess I should also note that becasue of my heart problems, I can not take any medication that contains a decongestant and I am 'allergic' to tylenol and asprin so that leaves me with only the 'small' version of Coracident (major spelling issues there!), so when it hits my sinuses, there is nothing OTC that I can actually take.

The receptionist suggested that I head to emerg but that she would make me the NP appointment for next week.  Needless to say mom was not impressed.  We know that once certain symptoms appear it's all downhill from there, and those symptoms are now here.  Thankfully, mom had a follow-up appointment with our GP on thursday for her back so she called in, stated it was pretty ridiculus that when I am this sick I have to wait over a week and that there is no way she is taking me to the ER with this.  So I now have her thursday appointment spot but feel so bad that she is going to have to wait a month longer to get the results of her back xrays :(

Well I am sitting at 101* which is really high for me so going to go grab some advil and rest some more.  Will be drinking lots, keep popping the advil and laying low until thursday.

Monday, December 6, 2010

Rheumy Visit - December 2nd, 2010

Before I say anything I have one thing I have to say..... I LOVE my Rheumy!  I don't know where I would be without Dr. W.  Well actually, I wouldnt know about the Osteoporosis, Would be in severe pain with medication dosages through the roof, would probably be very deprerssed and anxious about my health and still be fighting with multiple doctors to get even the slightest thing accomplished.  The bad side?  He is very old, and probably has hips worse than the majority of his patients (he took time off a few years ago to get both of them replaced).  When he passes away (mom and I both believe that he will never retire, he will stop practicing medication the day he dies) I don't know what I will do, it's a thought that actually scares me!  Okay, onto the appointment.

I made up my list as to what to ask about.  It was pain meds (long and short acting), my left wrist, the ring splints and just pain levels in general and if we should be adding a third medication (muscle relaxant) into the mix for dislocations and neck pain.  So we get in there and first thing he says is that he found another EDSer and almost missed it!  He said he was kicking himself and actually thought of my case before even realizing the EDS, he was shocked and happy lol.  However it doesnt sound like this patient is as proactive and trying in her own health care.  I told him that he could give her my name if she would like to talk and he said he would but for me not to hold my breath as he doubted she would.

First health issue is my wrist.  He looks at the xray, reads off a bunch of jumbled words and goes 'Do you know what this says?' and I said no so he goes 'They saw it was a 28 year old girl, a patient of Dr. W and figures that they should just be looking for arthritis.  And apparently you don't have it, but it also shows that there are no fractures which is the important thing'.  I ask then what does that mean and he brings me over to the little stool to play with my hands and wrists.  Now normally I refuse to let dr's just play with them without a full reason but I completely trust Dr. W, he has learned my movements as to know when to back off (as I will let him play with them, it usually creates pain, but he has learned when it's too far).  He then asks if I have had physio of the wrists and I internally groan as I hate physio and it usually makes me worse.  He said that he would really like me to work with an informed physiotherapist that he really really likes as he is worried that when I break my wrist (notice I said when and not if?  Yeah we did too) the stronger my wrist is, the faster it will heal.  I told him that as long as OHIP would cover it that I would give it a go but that I didnt have money to pay for it out of pocket and wasn't sure if he would help as the head ptist at the local hospital told me that my joints were surprisngly strong and adequate.  He then tested it and had me squeeze his hands, then I get 'Well, you are pretty strong, for a girl' lol.  So we agreed that he would conatct his favourite PTist and discuss my case with him for my next appointment.

Next up was the pain issues.  We were talking and all of a sudden he goes 'How are your knees?'  I looked at mom and didnt know how to answer.  I was like I am still dealing with the wrist, we havent figured anything out about the shoulder and neck issues and now you want to start on the knees?!?!? I said not good and they were what started all the problems and that I had three operations on the right knee.  He asks when the last xrays were and I said years ago, he did an MRI a few spring's ago but I had no clue about xrays.  He goes good.  He then asks if I would be in a drug trial.  It is for a new osteoarthritis medication and they are looking at the knees but he is hoping that it will actually help all my joints.  I got worried and asked if it was an anti-inflam med and he gives this huge smile and goes "No!"  Then turns around, goes to the phone again and makes a phone call.  We hear "I have a good case for you, she definitly has OA in the knee but doesnt have recent xrays, will you still take her?  Great".  Then he tells us that we would hear from M in a few days.  He says that the study is about something like a tissue regeneration and growth hormone combination (obviously he knew what the meds were, I just can't really remember about the first part).  He also said that he didnt want me to start it until he could read over all the study information and go through with it with me.

After that we quickly get my meds switched.  Instead of increasing dosages we rotate between two different medications.  I had been on the long acting as well as my breakthrough meds for a long stretch of time so neither were really working.  He just asked me which med I wanted, what dosage and how many to give me.  So I ramble off what the usual dose for this medication is and he just writes it down.  He goes to do the breakthrough meds and asks how many he gives me and I tell him 100 and he goes to write down 100 a month!! Not the normal of 100 per three months lol, quickly got that figured out.  He told me that next time, as soon as I walk into the room to go "I need drugs" lol, not sure I will be doing that though.  Lastly he had no objection about the splints and wrote up a perscription for them and reminded me that there is a more local company that does the same product and that I might want to look into them.

All in all a really good appointment.  I have since heard from the study doctor but havent talked to him, playing phone tag at the moment but I am really inrested in this.  A TV show I watched had a girl who got injured and was buying growth hormone off the street to speed up her healing.  If this helps things heal faster than it will be great.  I also have been having a lot of problems with my left hip.  It is one of the top 3 pain issues this last week.  I know that I have OA in it just by feel and my old OS told me that I probably had it in all the large joints (he confirmed knee when he was doing the surgeries).  So if I get into the study through my bad knees but end up with my hips feeling better it will be great!  Mom and I laughed so much though about him randomly coming out with 'how are your knees' as he is pretty scatterbrained and we had no clue where he was going with it.  But it proves that he is still sharp as a tack and always thinking!  I love this guy!