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!

Saturday, November 27, 2010


Okay, this is going to be a very very bad weekend!!  I took my Actonel today which means starting any time now I am going to be in a lot of pain and in pure agony tomorrow no matter how many pain killers I take.  Also my 'brother' is supposed to be coming out tomorrow with his girlfriend (her first visit, his first in a few months) and that is a very stressful time for me and means hiding out in my room the entire time trying to stay come so the autonomic issues don't flare up big time.  Third is what I am really pissed off about.  A group that I made a website for decided to switch to some one else doing the updates.  I stated that was fine, I didnt like the behaviour of one member but let that go, but that if I was not doing the updates then they weren't going to be using my pages.  After not having heard anything about the site in close to a month as in what they wanted done with the forum, the email address and what they wanted as a temp page, I went to go on today to erase my files to find out that they somehow got the ftp password changed and have gone in and edited my pages.  I wrote to the three people in charge stating I was not happy and that I wanted my files removed and got a very hostile email from the one I was having issues with stating that I should stop bitching, they own the files not me and that he didnt think I should be getting paid anymore after this.  That if I had of been paying attention I would have noticed that he switched the passwords a while ago and something along the lines that if I had of been paying attention I would have noticed this but that was the problem with me doing the site anyways.  I could go on and on about this but it's just getting me even more pissed up thinking about it and I need to at least try to calm down a bit so I can get to sleep.  Good luck though as stress makes my heart and nerves and autonomic issues just skyrocket!!!!

Tuesday, November 23, 2010

New Joint Issues

Well since I have yet to bring over important posts from my old blog or set up pages describing my health and pain issues, here is a breif backstory about my bad joints.  I have not included the minor issues.  I consider minor issues as ones that I have not had to bring up with my rheumy, have had no tests done about and haven't gone for any testing, imaging or physiotherapy for.  Here's my list:
  • Right Knee:
    • 3 surgeries - Lateral Release, Scope & Debridment & a Lateral Reconstruction
    • Chondromalasia Patella and Severe Mal Traking
    • Chronic Tendonitis and Bursitus
  • Left Ankle:
    • Very unstable, flat feet, lack of ROM (pointing toes up only non-hypermobile joint)
    • Tendonitis and Bursitus
    • Ganglion Cyst on the Tendon
  • Left & Right Wrists:
    • Very Unstable, constantly dislocating wrist (left wrist being worse)
    • Carpel Tunnel Syndrome
    • Frequent dislocation in thumb (again mainly left wrist)
  • Right Shoulder:
    • 4 Corisone Shots (AC Joint twice, once for bicep tendonitis one for bursitus)
    • Bicep Tendonitis and Bursitus
    • Unstable, occasional subluxations possible dislocation a few times
    • Severe muscle spasms and 'pulling'
  • Cervical Spine:
    • Herniated Disc (non-surgical at this point but is causing lots of my pain)
    • Bone Spur / small bone fragments
    • Cervical Stenosis / Low spinal fluid
Well over the last month or so, most of these joints have deteriorated and pretty fast which is scarey.  The  right knee is as 'grumpy' as normal but thankfully no new issues.  My left ankle has also been causing issues, it feels so 'weak' that it feels like it's just going to crash out from under me one of these days and I'll be sitting on my butt when that happens (and hopefully dont reach to grab something to prevent my falling or that will just mess up my arms!) My left wrist is in a very bad state.  Had emergent xrays for possible fracture as pain has been so severe for such an extended length of time (going on a few months).  I have to have it braced at least part of the day and am starting to come to terms with that the wrist might just be unfixable at this point.  It doesnt stay in much (thankfully I can reduce it on my own so far!) and is just constantly in some state of pain.  What concerns me is that I have been using my right wrist so much that it is now starting to go our a few times a week (the right one goes out a few times a day!).  Right shoulder has been just as painfull as normal but sleeping on my nan's hard bed and the 3.5 hour travel on friday and sunday have not left it where it wants to be.  I am having severe muscle spasms right along the edge of the shoulder blade and keep feeling like I have to pull it up and forward to get it to feel 'right'.  The OS I saw about it stated that there was nothing wrong with the shoulder, it was all my neck.  My cervical spine is basically the same as well.  The long trip last weekend really did screw with it and I was in massive pain after the bumpy ride on friday (took max does of pain meds a few times as well as some OTC meds) and my bad headaches are coming back but that is to be expected.

No, what is really bothering me is the 'new' joints causing problems.  I was always happy to say that my elbows were perfectly normal and never caused problems (besides the obvious hypermobility) or pain.  Well in the summer I moved some weird way and heard a pop then I couldnt straighten out my arm.  Lots of ice, some Robax and some time and I was able to move it again and the pain was short lived.  Now this has happened quite a few times and is now causing some pain (minor compared to the other joints, but still hurting) with some movements and during pain flares.

The other main issue is my hips getting worse.  I have always had trouble with them, it just never surpased the other joint issues I had.  When I first met my Rheumy and told him that I had hip pain he put me on the spot saying "Where do you think your hip is", I showed him and he got surprised as apparntly most people with hip pain aren't actually having hip pain, however it showed us that I had legitimate hip pain.  Again with the traveling and hard bed they have been bugging me on and off for about a month (we did that same trip in october so had the traveling and bad bed then).  Well last night I was in bed after taking my pain meds and just couldnt sleep.  I went to move and heard a very loud 'pop' followed by tingly feelings down my left leg and up into my back.  It scared me! I didnt move for a good 5 minutes as I was worried what would happen.  I then slowly moved it and realized that the pain that I normally would have got from that movement didn't happen and when I woke up this morning I realized that all the normal day to day pain in that hip was also gone!  I dont think it has been fully dislocated this length of time but something was obviously not where it was supposed to be!

Well that ended up being a LOT longer than I had anticipated!!  But probably a good thing to have written down all together somewhere.  I will probably use this as part of a page of the different health issues I have.  In regards to this blog, if you know of someone who might be interested in it please feel free to pass it on to others.  I would love to get it into an EDS 'blog-ring' as it might help others, give me a place to vent about things that normal people have no clue about and just maybe there might be someone reading this that could have a few tips to make things better.

Monday, November 15, 2010

Neurologist Appointment

Well I saw the neuro (Dr. K) last tuesday.  It was not the best appointment but I guess, in reality, it wasn't the worst either.  Nothing figured out, just a few things ruled out and a suggestion.

Mom and I were called into the room and he sat in the little adjoining room and I joked that he was googleing EDS then we hear typing lol.  He comes in and asks about my neck and tinglingn etc.  He asked about tingling in my hands and I said that I did but it was hard to tell as I have also been diagnosed with Carpel Tunnel Syndrome.  He immediatly asks when I had the EMG done and I said never, it was just diagnosed with a physical and history as well as it being very common in EDS and that if I need surgery for it, I will be the third generation to do so (mom had both wrists done as well as my grandfather, my nan had surgery too but I am not sure if it was the same issue).  We then asked him if he had ever heard of EDS and he said that he knew it was a musco-skeletal disorder that didnt have neurological issues.  I brought up the chiari, tethered cord, autonomic issues as just some of the EDS related disorders that are neurological in basis.

He then wanted to do a full neurological work up.  Tunning forks, pricking the skin, rubbing something rough over my skin, checking my reflexes (he was very nice when he went to check the reflexes in my left knee and I quickly reached down to cover my knee and said no, when I explained about the bursa he said it was okay to skip the one joint (unlike the other neuro before)).  He had me follow a light with my eyes and then started 'manipulating' my neck and kept asking if doing something caused tingling or any changes.  I dont know how many times I told him that movement does not create any symptoms and most likely wouldnt becasue of the EDS (I had my full ROM almost the instant the knee imobolizer was taken off after surgery and had full ROM when I broke my finger).  He checked my wrists which was a bit of a sore spot for me as he had just seen that I had my wrist wrapped up, we had discused carpel tunnel and the dislocations and let me tell you, his full physical work-up was not gentle in the slightest!!

He then took me into the small room and showed me my MRI scans.  He showed me how there is no sign of chiari (very common in EDSers) and that yes I had a pretty bad herniated disc but it was not surgical at this point and the only treatment for it is to treat the pain that it causes.  There was mild stenosis near the herniated disc but not that would cause problems and there were no nerve impingments along the spine (cervical and thoratic was scanned).

So there is absolutly no structural issue that is causing the sweatings.  He also said that it was most likely autonomic but that he doesnt treat it.  He suggested trying Klonopin (sp?) for the sweating but I would have to be very carefull as it could drop your BP in sudden spikes and cause blacking out with the low BP issues.  He things my temperature issues are 'perceived' feelings and not 'actual' feelings.  Like my body perceives that it is cold but my body isnt actually cold.  He doesnt thing its the Hypothalomus (wow murdered that spelling!!) but never told us if anything could be done to check and make sure its a perceived thing and not a brain thing.  Regarding the swallowing issues, he did another work up of my gag reflex and stuff like that and said he saw no reason for it and if it was worrisome to me that he would suggest an barium swallow done.

The strange and unsettling thing though was that he would not write down the name of the medication that he was suggesting or the dose (thankfully I have read enough online to know which medication he was talking about), didnt even tell us why he wouldn't perscribe it and made no suggestion at all of a follow-up appointment.  When we asked again (you had to keep redirecting him as he was focusing on the herniated disc and not the sweating and possible other neuro issues) as to why I was only sweating from the waist up he gave the ultimate answer.  Ready for this.... I sweat only above the waist because that is where most of the body's sweat glands are!?!?!?!  We kinda took this as an answer until we got out and started thinking about it.  I know for sure that when I get hot I sweat behind my knees, and my feet sweat as well as my legs.  And when I get one of the weird sweats I don't sweat under my arms anymore than normal.  By the sounds of it he just thought I was having 'hot flashes' for some reason.  At this point I realized that he didnt really know what was going on so I just smiled and nodded a lot.

So, not much helped.  However, I was so resigned about this appointment, figuring that he would have no clue what EDS was or what was going on with me that I was able to walk out of the appointment with dry eyes and then mom and I picked apart what he said for the ride home.  So for now we aren't doing anything.  I am going to stay on the SSRI med for another 3 - 4 months to see if it kicks in and if there is no help then I will stop it and try this new med.  I figure there isn't much point to trying two new medications within a few months of each other and then not know which one (if any) is working.  We have now ruled out any structural damage causing the sweats, it may be contributing to it but it is not the cause so at least we have crossed another possible cause off the list.  I just wish we could circle that one cause so we could work towards a treatment and hopefully getting back to a semi-normal life.  Also going to ask my internist if she thinks if there is a benefit for me to have the swallowing test done.  I think I would like to have it done (even though I have heard its horrible) but it would put my mind at ease that there isnt something bad causing the decline and it would also serve as a baseline for later if it gets worse.

So now we are still up in the air.  Even though I am not going to try that med until later (if I acutally try it, from what I have breifly read it's in the same class as valium! as if I don't sleep enough!) I still need to discuss it with a doctor.  My internist (and now cardio) doesnt like perscribing non-heart related medications (she doesnt feel comfortable giving out medications that she is not up to date with, which I completely respect! I would rather that than some dr shoving unknown meds down my throat) and the reason that I am going to all these specialists is that my GP has already dropped the ball on this issue and I dont know if I want to rely on him for an issue he has no clue about. The one thing mom and I dont get is that we thought the body's nervous system was dealt with by a neurologist but this guy made it sound like that wasnt his area.  I guess it's just back to the internist to see what the next step (if we even have one) is.

Sunday, October 31, 2010

I almost did it

I think I have mentioned here that I have recently (a few months) been diagnosed with osteoporosis.  My numbers are actually in the osteopenia range but due to my age and the quick decrease in numbers I am to be refered to as having full on osteoporosis.  My GP (Dr.B) gave me a list of different medications that could be tried and my Rheumy (Dr.W) and I (and my mom) discussed which treatment would work best for me.  We decided that the one that you get as an IV once a year was automatically out because of my veins and even just having to due one IV a year is enough for me as IV's are extremely painfull.  I had major knee surgery and when I woke up I didnt care about the knee pain, I just wanted that IV out asap.  I didnt care if it meant having to use lesser pain meds, I just wanted the pain of the IV gone!  Dr. W took another off the list because it could lead to jaw bone death and at my age he doesnt want to chance that so we settled on the only other option which was Actonel (the bi-annual injection is just becoming available here and we highly doubt it will be covered by my 'insurance' unless other meds have been tried and ruled out).

Just as another quick note - I take all the proper supplements, have added quite a lot of calcium rich foods to my diet, and don't drink any pop or any of the other stuff to avoid.  I do not get enough exercise but with the state of my body that is just not much of a reality.  So I started the actonel.  The pharmasist told me that I would probably be achey the day I took it and to basically just have an 'off day' and it will pass.  I took it in the afternoon as that is when I finally wake up and felt fine for the rest of the day.  The next day.... pure hell!  The worst pain in my back and legs that I have ever felt!  I doubled then tripled my pain killers, advil every 4 hours, heating pads, ice packs and anything else I could think of.  Thankfully I only have to take this once a month and I guess 12 days of torture will make up for preventing serious injury in the future.  Just don't make me mad on that one day a month as I am very very grumpy.

Well my 'off day' happened to fall last thursday.  Tuesday's and thursday's are K's karate days.  I made a promise to myself when K was born and I started having health issues that my health issues would NEVER interfere with his life, I would never miss an important event in his life because I didnt feel good.  Last thursday K got his second stripe of his advanced orange belt.  After that we had to go to Walmart so K could get a present for his friend's birthday party the next day (OT - who sends a birthday invite out on monday for a friday party in a small town with no real stores to buy presents at???).  We got to the store, I got a cart out, saw the few motorized carts and looked at them and kinda-joking but serious that I should just take one of them.  Mom in all sincerity told me to take one and see if it made shopping easier.  Well I get enough dirty looks just parking in a handicapp space, I couldnt imagine the dirty looks I would get riding around in one of them.  So 'pride' won out over reality and I walked the store, got home and downed more pain killers that night than I usually take in an entire week.  Next month if we go shopping on the off day I will be using one no matter what!

Tuesday, October 26, 2010

The first step...

First off, just going to say that I have not heard anything back about my wrist.  I called my rheumy on monday and they told me to call back on wednesday.  I was going to ask to get them to rush it but really would it make that much of difference?  I have already had this issue for over a month, what will a few more days hurt.  I didnt mention that after the xrays and stuff  we went over and I ordered a new brace for my wrist.  They called on monday and it is in so going to have to go in and get it t omorrow or thursday (depending on mom's schedule as I can't really drive right now).

Oh speaking of wrists, had an interesting predicament this weekend.  I had my left hand all wrapped up in my immobolizer and had been taking my pain killers pretty regularly (long trip, stress etc makes my pain worse).  We were all (all 4 generations of the family, only my dad not there) and all of a sudden there was this load *clunk* my mom turned to me, saw that my left wrist was still wrapped up and just goes "You have got to be kidding me".  Nope, my right wrist had just dislocated and my thumb was going to go soon too.  Try eating pizza with your left wrist in an immobolizer, your right wrist all wrapped up in an ace bandage and your thumb covered with bandaids (mimicing a splint).  My mom had a pretty good laugh though at how pathetic I looked and I think it showed to the rest of the family just how easy and often these things occur.  Thankfully it has already 'cleaned up' and I am having no issues with it. The thumb is still slightly problematic but no different than a normal thumb dislocation.

So as to the title of the post.  I am now the proud owner of a 9inch, plastic support bar in my bathroom.  It is right beside my shower so that I can grab it to use as support when I am getting out of the shower as that had started to be an issue.  With the POTS and autonomic issues I get really lightheaded in the shower so have to be careful.  This is my first visible adaptive permanent device.  I need to really get a shower chair but it's so big and visible that I have yet to start down that road.  Maybe now that the first one is out of the way, subsequent help might be easier to adapt too.

Thursday, October 21, 2010

Not impressed :(

Okay, so I dislocated my left wrist about a month ago.  No big deal right?  I mean it goes out all the time with no real issues.  Well, this time I think there are issues.  I have had it splinted this last week or so but still it's in a lot of pain, swelling and just 'wrong'.  I gathered up the courage to go into my Rheumy's office yesterday to ask if I could get it looked at.  Apparently it was his busy day (it was the monthly meeting for all his patients on 'dangerous' medications to check in with him).  Thankfully someone had just cancelled an appointment so they just happened to have an opening for today.  We also headed over to the place that I get most of my braces from and they switched from the Corflex one that I already had to another brand that just fit horribly!  I could have put 3 fingers between my wrist and the bend in the brace for the wrist, and 1 or 2 in the thumb bend.  The lady working there was shocked as she had never seen it fit THAT bad before on anyone and we decided that no amount of bending done to it would make it fit well enough.  She mentioned that she could order the one that I already had.  We tried a few other stores but couldnt find the one I wanted.

So today, I was having a bath to get ready for my appointment and noticed that the water was nice and warm, except for an area about the size of a toonie on my left wrist felt really cold.  Got dressed and we headed into town for the appointment.  I thanked M for fitting me in and again said that it just didnt feel right and she told me that yes, I definitly needed to get it looked at.  Went in and saw Dr. W. I took the brace off, told him I dislocated it, went over again a breif history (dislocations happening very frequently, carpel tunnel, etc) then he wanted to look at it.  He did a few small and gentle tests of it, pressing in areas, confirming where the pain was.  At one point he did a move that hurt and I guess he saw it on my face (I usually dont show pain at all, keep it internalized but when I do show pain it means I am in PAIN) and very quickly stopped and said he didnt want to play with it anymore.  He asked how many times in my life I had it xrayed and I told him probably only one or two times, the last time would have been 5 or so years ago before I had an MRI.  He mentioned that MRI's of wrists never show anything and wanted to know who ordered it.  He then told us that yes it was significantly swollen (I dont swell), he could see a loss of ROM (which isnt really a bad thing lol) and then wanted to feel my other hand and noted that my left wrist, on the inside, felt a lot warmer than the other side.  He told me that yes I definitly made the right move in coming in and that xrays were more than warrented in this case (and maybe should have been done sooner than a month later - oops!).  He wrote up the req form and wrote a full little letter on it.  Said something like xray left wrist post-dislocation, hypermobile and EDS, and to check for a fracture or any other abnormalities.  I asked what about results and I was under the impression that the xray people would be letting me know.  I thinked him again and we were on our way.

Next stop was the hospital for xrays.  Went in, didnt have to wait long before I was called back.  They asked what I was doing to dislocate it (like I can remember the cause of all my dislocations) and if I thought it was still dislocated or if it was back in (I think it is back in) and a breif explanation of EDS and I threw in about the low bone density as well.  She did three different views and told me I was good to go.  I asked her when I would find out the results and she tells me that someone would have to read it but the refering doctor should get the report in 4 to 5 business days!!  Oh and if it was urgent the refering doctor could call in to get it read stat.  Mom and I were not happy with leaving after so little.  We avoided the ER as it's one of my fears having to go in and have the ER doctors messing around with whatever joint I was having issues with.  And we didnt want to take up time in the ER for a non-emergent issue.  However, if we had of gone through the ER, we would know whether or not my wrist is actually fractured or not :S

Well, in 4 - 5 business days I will update as to what is going on with my wrist >:-(

Thursday, October 14, 2010

Am I A Horrible Person?

... I could really couldnt care less about people who end up with serious diseases because of their own stupidity.  I have two family members who are like this and a third who can be kind of considered in this category as well.  This person first.

1) This is a person who has gone through health problems, has very legitimate health problems that have been 'fixed' but because of age, the issues of pain are coming back.  They did see a surgeon and physiotherapist that have both said that at the age they are at nothing drastic could be done.  Due to past issues (dependancy issues 30+ years ago) they will not touch a pain killer no matter how much pain they are in.  Okay, I get this, being in chronic pain constantly I can understand not wanting to really give in to that.  However I have learned limits.  This person will do a full twelve hour, heavily physical type of job at home and then become so grumpy that everyone else avoids them for weeks at a time.  It's not my fault you wont treat the pain you put yourself in and continue to abuse your body for no good reason even though they know they will be in pain (and be a pain in the ass).

2) This person I could be very happy if I never had to see of or hear of again for the rest of my life.  I don't hold grudges and am pretty easy going but this person I absolutly genuinely hate and thankfully I no longer feel guilty for hating this person like everyone thinks I should be.  This person is a long-time, in-and-out drug addict.  They have caused much pain and anger in the family.  During one of his 'unclean' times when he was using IV drugs and having unprotected sex with a person he barely knew, they ended up with Hep. C.  Well this person went through a chemo type of treatment and decided to use that as an excuse for basically verbally (well email) harrassing me.  Oh and this person blames the partner for everything and then willingly took a perscription for pain killers during the chemo but it wasnt their fault either, the dr pushed them :S So because of their complete negligance and 'god-complex' (nothing can go wrong with me and if it does i just blame everyone else).

3) The third person is kinda the most recent.  As far as I am concerned, they are a hypochondriac that always wants to 'compare' and rate other diseases.  We went for a good year or so with this person mimicing my symptoms (with just a slight varience).  They were finally diagnosed with "fibromyalgia" (Don't get me wrong I totally believe this is a real disease but it is way too often used as a 'stop bugging me about this so I will give you a disorder so you will shut up').  Long story short, they then started to abuse pain medications and had other family members looking at me and comparing our situations.  This person was very easily convinced into having a gastric bypass surgery that has lead to full out drug addiction (buying Rx meds on the street and stealing their son's adhd meds), possible anorexia (they are sickly looking) and a whole lot of other mainly psychological issues.  This person never did the pre-counseling and stuff that the doctor told them that they had to do before surgery.  Even worse is that they used post-op 'issues' to score more drugs and underwent a second surgery again so they had a script for pain killers.  This person has never gone for a follow-up with the clinic in the states that performed the surgery.  They also do NOT follow a healthy diet or any type of follow up medical care.  These are very important (and stated in the pre-pre-op seminar tha I ended up going with her to as I knew the area better than she did) as they keep a close eye on different levels in your blood and urine as let's face it, a body is not equipped to handle a gastric bypass and you are basicaly starving your body of absortion of all your minerals and necessary vitamins.  The least you should be doing is getting a local dr to order blood tests pretty frequently to try and avoid serious health issues.  Well this person did none of that at all.  The last time that the police were called and took them to the hospital and put her in on a 'hold' they did bloodwork and found out that this person has Rheumatoid Arthritis.  Well I did a quick 5 second search on google and find out that this is a very very very common outcome in a person that has had gastric bypass normally and that basically that if you dont follow a healthy diet and vitamin regieme, your doomed.  This person has also screwed up her entire health history because they wanted to take the easy way out (they had lost quite a bit of weight on WW) with their weight problem (which really wasn't overly horrible) and decided to just not go to any follow-up visits with their doctors in the states nor their doctor's in their home town.  Becaues of the original surgery, there are very few medications that can be taken to help the RA and it is a procedure that can not be reversed.  So yes, they may have a smaller body but they are only in their early 30's and have a body that completely shut down because it was being abused.  This person is also on a methadoe treatment plan for addiction becasue they had a perscription pill addiction (of course it's the doctor's fault again) and is waiting to get into a inpatient treatment center, however there are very few in our province and they will be waiting for quite a while to get in.  So add to the gastric bypass, the RA, the other vitamin and mineral deficiencies that they are a drug addict and if they ever try going back on pain killers to help the pain, they will end up back at square one as an addict all over again.  We are heading to their hometown next weekend and I am just dreading it.  Every visit up there turns into a full on debate about this persons latest issue in their life.

As someone how has serious health problems that I have absolutly no say in, I just cant feel sorry for these people who go out and end up with diseases just because of pure negligence on thier part.  I save my empathy and concern fo those who do not create their own health problems and are very very involved and proactive in their own health.  I know this probably makes me a horrible person but honestly, i just dont care.

*PS I know there are horrible grammar issues in this post but I wanted to keep it pretty neutral and not slip up on something.

Monday, October 4, 2010

Title for my blog

I can not figure out what I should name this blog.  I have a few ideas but none of them really stick out to me.  Here are some ideas:

The Life Of A Zebra
Journey Of An OddBod
The Path I Am On
Genetic Mutant 101
Welcome To My World
Beware You Are About To Entire My World / Mind


Saturday, October 2, 2010

Trying this out

Well I have had another blog for quite a few years now but it doesnt have the privacy features that I would like.  Plus it has stuff on it from a long time ago and situations have changed.  And it was easy to find if you knew I had a blog with a certain provider.  Going to play around with this one and see if I like it.  If I find that I prefer this site, I will move over the more current posts dealing with the health issues I am facing.