June 29th - Serious Knee Injury and Family Stuff

Yet again it has been way to long between posts.  Not much has been going on medically wise since starting the thyroid medications and things have just been pretty quiet.  My nephew finished grade six with very good marks for him, he amazingly got his junior black belt in kenpo karate at only 11 and things were nice and settled with no word from my brother and I was even able to help out a neighbour by tutoring her grandson so he can get his high school diploma.  We are going to the cottage at the end of August but that was the only thing we had planned for the entire summer so mom and I figured that we would take K and head up to my grandma's house for a week once he was out of school.  We got there, got unpacked and settled in and things seemed to be going well... until that Saturday (29th).

We (me, mom, grandma and cousin) went to go and do some grocery shopping.  After a long (and sweaty!) trip to the store we got groceries for two different family's week of shopping and headed home.  We got home and I was on the back bench seat so was kinda stuck until most of the groceries had been unloaded.  When it was done to only a few items, I went to push a case of water forward with my right leg and ended up dislocating my knee laterally and pushed it up out of the joint.  Mom and my cousin continued to empty the van and then mom noticed that I was pale white, sweaty and grabbing my knee so helped me out of the van, rolled her eyes at how I dislocated it and I went in to the living room with an ice pack and mom went to get me my medications and a drink.  It sucked and I was very grumpy about it.  No one else seemed to really understand what happened (or didn't believe that I could do that much serious damage just from pushing something with my foot).  Basically stayed off it the rest of the day and kept it elevated, wrapped and iced (thankfully I always bring my own ice packs).  Went to bed that night with a pillow under my knee, iced strapped to it and loaded up on pain meds.

On Sunday we headed out to the beach to my aunt's house for Canada Day celebrations.  Spent most of the day just sitting with my knee straight and staying off it as much as I could.  Lost out on fun time though as I couldn't go to mini golf with the kids, to get snacks with my cousins or do a bit of shopping on the strip.  Wasn't very happy.  We headed to the beach to watch the fireworks and all my cousins and the kids wanted to go to the strip to get treats and go to an arcade.  No thought to the fact that I wouldn't be able to go of course but then mom remembered that we do keep a crutch in the van so I was able to hobble along behind them. Thankfully the kids seemed to stay back a bit and stay with me.  Went back for the fireworks then back to my grandma's house.

All hell broke loose on the Wednesday when my cousin had an 'incident' that through everything out of place and added a LOT of stress to the house.  The fact that my knee was injured didn't seem to matter anymore as I had been 'replaced' and was then getting asked to do favours for my grandma and my mom.  Don't even want to get into what happened but it was typical drama for the person and the rest of the entire visit was all about my poor cousin.

I was feeling a bit better the following Sunday and thought I was okay to go with my two cousins, their two kids and my nephew to his work's summer party.  I thought that it was a place with a lot of places to sit down, I wouldn't have to do too much walking and my nephew could just go off and be with his cousins while I sat.  I had even packed a book into the car so if I could find a place I could read.  That's a laugh! Like always the 'adults' wanted to do what they wanted to do (eat lunch) and then the kids wanted to do what they wanted to do (a scavenger hunt that ended in 30 minutes that they could win good prizes with).  Well the 'adults' just said fine and headed to get lunch leaving me standing with three kids (15, 12, and 11) which I were not going to let go on their own!  So I did an entire circuit of this park not once but twice while the other 'adults' ate lunch.  Then I needed a drink so they told me to go get one in the gazebo, well there was nothing so I said I needed to get to the front to get a drink.  Well it was 'let the kids ride this ride first', 'oh they like this ride', 'you guys should do that', 'look at the cute baby animals' and finally 'let's play our round of mini golf cause it's pretty empty right now'. Then I had to go back out to the car to get the kids swim stuff and I didn't have a handicap spot because they had been late getting ready to leave (and I had been up long before we left!). We saw an opening then at the handicap spot so I moved the van closer.  The kids wanted to look in the store so I left my backpack with my cousin to watch, looked in the store and came out to find my bag sitting all alone where I left it with my cousin quite a ways away.  Then I finally got a drink!!!  After a few yards of me limping and being lopsided because I had a full back pack on my shoulder the oldest cousin finally took it from me.  The kids did the water park thing while we sat at the patio and then my cousin had an 'episode' that was embarrassing her husband so we had to leave.  I had told my nephew that he couldn't get fries because that wasn't fair to the other kids, well I go to the bathroom and find the oldest cousin eating fries and gravy so I gave in and got my nephew fries to eat.  I apparently looked really bad at this point because the oldest kid looked at me, got up from the picnic table, bought me a bottle of water and told me to drink it. I was very thankfully as the pop I got early was done in two seconds as I was so thirsty and I would finally be able to take my pain meds. We finally got home and I was glad the day was over!

The next day I literally did not get out of bed.  I was so dehydrated that I couldn't stand up without passing out and my pain levels were so high that I knew I was going to be in a horrible mood if anyone said anything. And I was right when I went out to get a drink and mom goes 'Well isn't it miss. anti-social', so I just got my drink and went back to bed.

Thankfully after one month from when I injured it my knee is feeling somewhat better.  I still think that I did some damage to the tendon but I have no doctor to go to in order to see if I did any damage.  Going to wait until my next appointment (three months from now) and ask for a new MRI done on it to see if anything is messed up. Unfortunately even if it is, no doctor will touch me.  Because of the injury, sleeping on a hard bed and all the stress (which makes pain worse for me as I tense up more) I went through three months worth of pain medications in only two months.  Thankfully when I explained it to the nurse at my doctor's office she didn't hesitate and had my doctor write me a new three months worth of meds.  I am still taking more than I normally would because of it but down from what I was taking.

Frustrations

I don't know why but lately I just feel like everyone is against me and that everything I do is wrong.  I can't even begin to count how many suppers I have missed because everything blows up and I can't eat after. Stress makes me not hungry at all, most of the time it causes naseua and then the heart rate jump and adrenaline kick in making it just oh so much fun.  I always thought stress and EDS was a bad combo but I know better now, stress and autonomic dysfunction is even worse!  I immediatly think of stuff to post on facebook to relieve stress but that isn't possible anymore because I have my parents and a few of their friends on my friends list and that would just create another fight. Tonight just really got me because everyone in the house was mad at me. The reason - I tried to help K study for his math test tomorrow.  Should be interesting to see what he gets on it :S

"Brother" update and more

So I know I haven't posted anything in a while.  Been a lot of stress going on around here which has obviously negatively impacted my health.  Having a lot of autonomic issues, completely exhausted (to the point that it seems like a great effort just to lift my head up while sitting on the couch.  Everyone is also really stressed out.  K doesn't really understand what is going on, he just knows his 'dad' is in the hospital with an infection in his leg.  Dad is corresponding with my 'brother' but mom isn't at this point.  Well I guess I should update what is going on first to get my 'readers' lol up to speed.

He has necrotizing fasciitis in his left leg.  He has a wound that goes from just below his hip all the way down to just above his knee and is a good two or three inches wide and goes down as deep to the point it was at his muscle (some had to be removed).  He has had three surgeries (I believe, lost count) and was kept sedated and on a ventilator for quite a long time because, as my dad says "he was being an asshole" so they just kept him sedated instead of bothering with him.  They think they got all of the bad stuff out but would have to wait a few weeks before they could even start doing skin grafts.  He was released from the ICU last week but is now in an isolation room where you have to be fully gowned to go in.  The ventilator is gone but there a lot of IV's.  I believe they have either started working for the skin graft or it will begin this week, I am not sure (and haven't gotten any updates lately - don't get me started on that!).  That is all I know health wise.  However, I was VERY relieved to hear that my dad contacted the hospital and told them that he has no where to go and he can not come to our place (told them he "has a daughter with EDS and his son [K] living here who have to take priority")  The hospital said that they would get social workers involved when he gets closer to being released (which they are giving no time frame for at all).

A couple weeks ago dad called in the 'troops'.  One of our family's really close friend (more like family) has been clean and sober for 30 years, works in a rehab treatment facility and has multiple family members who are addicts (drug and/or alcohol - not going to distinguish from here out because it's not the substance that matters, it's the addiction).  Dad was going away that Saturday and called her in (will call her D from here out) to come and talk to mom, and if I let her, talk to me.  We talked for HOURS and got a lot out of it but mostly the theme was don't let his actions affect anything to do with anyone else.  Mom apologized for not believing me (I had called out both him and her that they were using and I kept getting the 'You just don't like him' excuse).  D told me that if we ever decided to let him back in the family and this situation occurs again, that I better call her first thing and she would come out and help me.  She fully agreed with me that she didn't feel he should have ever had unsupervised visits in the entire 10 years his son has been alive, she just didn't feel it was her place to say anything.  She got mom to realize that this entire situation is affecting me more than she would have ever imagined.  She said that she envies the relationship that mom and I had and wished she was as close to her daughters.  She said that I have always been so strong and have had the healthiest relationship with dealing with my brother (Imagine hearing that!!!).  She also basically told mom that she better start accepting that my brother and I will ever have a relationship because I was only 10 when he started using so we never even had a real and honest relationship and that too much time and pain has passed to ever start a real one.  Especially because of K, he is my first priority and I have to remain objective and not be taken in with his lies like my mom does.  She also had me realize that no matter what mom will always hope for the best for my brother but that I should also have a say in things that go on since I am an adult in the house (and deserve to feel safe) and I am basically sharing half the parenting role with my mom (dad is just the 'babysitter' type of role - great for trips and special events but not for homework and discipline).  Basically this is the first time that D has ever seen my hurting and in emotional pain and it's not because of my brother, it's because I tried to bring what was going on to their attention many many times (and mom admitted to this when I started listing them off) and that no one would believe me.  I truly felt like I was the only one that was actually looking out for K's well being - and if that means he shouldn't be around his dad, then that is what should happen.  D told mom what her conditions to any contact would be if my brother and K were her kids.  She says that my brother should have his year chip in NA (narcotics anonymous), have a strong and established sponsor (someone who is also in NA and is like a mentor) and be providing financial support to my parents for raising his son.  I rolled my eyes and just told her that that would never happen.  We get at points that one weekend I am to call the police if he shows up and the next week he is coming to pick K up to go to his place with no explanation at all.  She kept trying to get my mom to go back to Al-Anon (generally a support group for spouses of addicts but now is also merging in with the group for adult children of alcoholics) and by the time she was done talking to me she really wanted me to go with her to one and that she would drive down (she is about an hour away) and take me to a meeting anytime.  She left from our house and went in to see my brother in the hospital (at this point she was the first visitor from 'our' side) and left him a note that if he was serious about getting clean and admitting that HE is the problem, that she would find him a place in the treatment center she works at ASAP.

Okay, so on to the new tidbits that have been happening.  I will put them in point form to hopefully make it easier to read and not just one large text block.

• Brother's car is parked in the driveway and we are not sure what is going to happen.  After I mentioned to mom that I was 99% sure there were drugs in the car (from things she denied months ago) dad talked to brother and told him that his car needed to be cleaned out and one of his 'friends' (not sure if it's a clean friend or a user) came and got any drugs or paraphernalia out of the car.  The car is supposed to cost $700 a month and he obviously doesn't have the money so we're not sure if it will be repossessed or what (I do know that my parents will not pay for it while he is in the hospital).
• Brother's girlfriend/fiance/ex is playing games.  She called mom last week and basically said that she wanted the car because it was just sitting in the driveway and she was having to pay for cabs to get to work.  She also came out with she was smoking pot AND had gotten into pain killers as well.  When mom told her that she had trusted her and why she had lied to her (she had told mom many times that brother was taking his pain meds after surgery 'responsible') so that K could still come to visit.  She is also playing mind games with brother sucking up to him at the hospital and other stuff.  Mom told her not to call again.
• We had a good week that we were avoiding phone calls from my grandma.  Mom didn't want grandma to find out about what was going on while she was alone in her apartment.  She called her sister (my aunt) and asked her to please go into town (30 minute drive) and tell her. Well my aunt "couldn't" get in until the end of the week so mom didn't want to talk to her before that in case grandma asked how my brother was doing and mom breaking down and telling her what was going on and grandma having to process that when she was home alone.
• It is getting really hard going into stores and stuff here in town and having people that we know coming up and asking how my brother is doing and trying to find a polite answer instead of saying 'I don't care how he is doing, it would have been better if he just died' - I don't think that would go over well - especially with people who look at us like the perfect family.
• I finally got the response that I wanted out of someone last week.  I told my friend (known her since third grade so she has known ALL that has gone on) what was going on and she just laughed and said he was like a cat and had nine lives (this is about the third time he basically should have died - this is the second possibly fatal disease he has gone through, and not even counting overdoses or 'cry-for-attention-I'm-going-to-kill-myself suicide attempts).  When I told her mom the basics she just rolled her eyes and shook her head.
• Ever since he has been 'awake' (ie. not sedated) he has been making numerous phone calls to the house.  Now remember, there are four of us who live here.  Dad will talk to him, mom won't at this point, I refuse and K isn't allowed to.  So when he calls the house and it rings and rings and rings until the answering machine picks up, then repeats that two or three times in the next few minutes.  He won't leave a message, but won't take the hint that we don't want to talk to him.

Well that is the updates on what is going on here with my brother and why things have been quiet.  I do have a new post coming about this weekend but will do that later.  Hope everyone who is reading this is doing well!!

Summer Fun Part 3 - Time With Family

We always make sure to spend at least a week up at my grandma's house.  She and both of my cousins (and their families) all live in the same townhouse co-op so the family is all nice and close.  My aunt and her fiance / common-law / boyfriend live about half an hour away from all of them.  As in the last post, we had planned that we were going to head to Wonderland on the Thursday but that was part way through our trip.  At the time we didn't realize it, but this was our summer vacation as the news we got when we returned home made it clear that no other traveling would be happening.  For simplicity I will name the 'nicknames' for the family.  Nan is nan obviously and she is my mom's mother (my only grandparent left actually and we make sure to see her multiple times a year), My aunt is my mothers younger sister and we will call her AD (we will call her partner UK).  My cousin J is the oldest and CK is the youngest. D1 and D2 are CK's two children.  Both cousin's are married but we barely saw them this trip so I don't need to give them labels.

On monday night, I took S back to the train station then did a few small errands around town before heading home.  I was planning on packing on Tuesday morning but kept thinking of things to add to my 'to-pack' list so I just gave up and got out of bed and packed up my suitcase and just left my 'catch-all / carry-on' back for the morning.  I got up early on Tuesday and helped mom pack all the last minute items and made sure that K had all the stuff that he would need for the car ride (which was around 4 hours in length).  We stopped at the Tim Horton's about 20 minutes into the trip to get Iced Cap's (Lemonade for K) and a bunch of donuts for the ride.  We decided against our normal lunch stop at the half-way mark and instead made out lunch stop about half an hour later.  We just got out to walk around a bit and got some McD's to eat in the car (the restaurant was packed and the van was air-conditioned).  Finally about half an hour before our destination we stopped at "Hi-Berry Market" and got some fresh strawberries, mini potatoes and a bunch of fresh corn on the cob.  We got there slightly before supper time and since Nan didn't know when  we would be there (we didn't either) we just went over to Zehrs and got a breaded chicken special and a few items that we needed to get for that night.  Nothing else was really done that night, K went off and played with his cousins and we just sat around talking.  Had a pretty early night as we were all quite tired from the drive up (why does traveling take so much energy?)

I had planned on doing absolutely nothing on Wednesday so that I could rest up and 'prepare' for Wonderland the next day.  Instead we quickly realized that I had forgotten to pack a tank top and over shirt and K had forgotten his old running shoes to wear in the water park area.  So somehow a trip that was just supposed to be me, mom, nan and K turned out to include all of us four plus both cousins and the two boys so we had 8 people total who all had to get different things.  We ended up splitting up with K and me going to find me some shirts and K some shoes, my CK taking her two boys to get hair cuts, mom and nan to do some grocery shopping for nan and J headed off to find some things she needed as well.  It didn't go to bad surprisingly and I was able to get everything I needed.  We got home and J and I (as well as CK) started discussing everything we needed to take (she didn't even think of taking the boys health cards just in case!).  We made lots of lists, got a cooler, froze water bottles and packed snack foods for the next day and all tried to get an early night.  Of course I have already posted what happened on the Thursday when we went to Wonderland.

Obviously Friday was always going to be a write-off as I was in so much pain and so tired.  It was today that mom and I learned that CK is most likely on quite a deal more 'medication' than she actually is on.  She came in mid-day and was very obviously stoned.  A few other times this week mom and I just looked at each other like 'they are all delusional to think this is normal'.  I actually didn't even get dressed until just before supper and that was only because I found out that my great aunt and uncle were coming over for a visit to see mom and I so I figured the least I could do was put on some normal clothes lol.  It had been about a year and a half since we had seen them so we had a good catch up and conversation.  They talked about how my mom's cousin was really sick with brain and lung cancer and how horrible it was (she later did pass away soon after we got home from nan's place).  CK came over that evening and told me it was her husband's company picnic the next day at Storybook Gardens and wanted to know if K and I wanted to go (of course we won't mention that she had no way to get there if I said no).  I wasn't too sure as I didn't really want to be alone with her all day but when mom asked if she could go as well as I might not be good for driving (had dislocated it that day) it sounded great.

The picnic was to start around 11 on Saturday so I got to sleep in a little bit at least.We had a pretty good day.  There was a treasure hunt type of game and the whole day was based on super heroes.  They had a pile of food - hamburgers, sausage, hot dog and chicken; every salad you could think of; lots of cookies and bars and any type of drink you could want.  We all played a game of mini golf (which I won :D), walked around and saw all of the animals in the small zoo (donkeys, monkeys, llamas and a bunch more, nothing exotic but still exciting enough for the kids) and then the boys went on a few different amusement park rides (K went on a scrambler type and a Ferris wheel).  We then headed back to the front so we could get the water stuff and it started to rain.  Thankfully it did not last long and during that time we ended up getting some fries for the kids to share.  Once the rain past we got all the stuff and headed to the back of the park where they had three different slides.  They were all too big for the smallest slide but were able to go on the other and did so for about an hour or so before we headed back to Nans.  We had plans the next day to go to the beach so just spent another low-key night sitting out front and talking while watching the kids play badminton in the parking lot area.

Mom let me sleep in for a while on Sunday as well and then woke me up when nan was ready to go!  I got up very quickly and jumped in the shower and very quickly packed up my zebra bag with stuff I would need for the day.  The beach is about half an hour away without traffic, and being a Sunday there was traffic.  We passed by a McD's on the way so mom went through and got all the boys something to eat and drink which thankfully kept them quiet most of the way (we were packed in, four adults and three kids, all the boys had to sit in the back bench together).  We got there shortly after lunch and everyone was there (except for J and CK's husbands who were working) and we just sat around talking for a while and then got organized as to who was going to go to the beach.  CK tried to get out of it but AD said no, they are your kids blah blah blah.  So it ended up being mom, me, AD, CK and the three boys.  We stayed at the beach for a few hours then headed back to AD's house for a BBQ supper and then left around 7:30ish.  The ride home was trying as the three boys would not behave went from extremes of asking them nicely to stop all the way to yelling at them and CK threatening hers with telling their dad.  Finished the day same as the others with sitting outside talking and watching the kids.

Nothing happened on Monday.  Mom wanted to do some cleaning things for nan as no one up there will help out with it, mom even got CK's husband to come over and re-do her dining room table as it was getting quite wobbly and nan depended on it to get up and down so needed that fixed.  She also got him to look at the dryer as it was getting so hot and they were worried it was a fire hazard.  Turns out the tube from the back of the dryer to vent outside had come undone and was just venting in to the apartment.  We finished the day off with mom, nan, me and the three boys watched "Johnny English" on DVD.  Tuesday was the day we left and was as uneventful as the way up.  Stopped at "Hi-Berry Farms" again to get strawberries, pickling cucumbers, corn, dill, garlic and some tomatoes.  Talked most of the way home about things that had gone on and our opinions on other things, got home mid-afternoon but K said he was too tired to go to karate that night.  Slept for a few days afterwards but all in all it was a pretty good trip.  The news we got after made things get tricky.

Summer Fun Part 2 - Wonderland

I have always wanted to take K to Wonderland, and thankfully things worked out so well this summer that not only did I get the chance to take him there, it also worked out that we went with other family members.  My cousin (J) and her sisters two sons who are my cousins (D1 who is 14.5 and D2 is 11.5) along with myself and K (who is 10.5 - we had all Christmas babies!), were able to get there when we had been up in their area (about 3.5 hours from where we live).  We had planned some things in advance - as in J was going to do the driving because I couldn't, at minimum I would be taking the younger kids to the "Dinosaurs Alive" park, we were going to spend a few hours at "Splash Works" and were going to take food with us to try and save some money.  Once we got to OS (where my extended family lives) and J and I got together, we had to do a bit of shopping the day before and then got packed the night before we left.  We planned that instead of us carrying all of our bathing suits and towels around all day that we would just keep them in the van and just carry what we needed then we could just pop out to the van (I have a handicap parking permit) before and after the water park to change items.  D1 had just been there with his school trip and informed us that they no longer allowed you to bring food into the park.  So instead I came up with the idea to just take a pile of snack food for the kids to eat on the way there, we could grab snack items while at the van after the water park and then the kids would have snacks for the ride home at night and we could just go together and get a late lunch / early supper while we were there.  I packed up the bag of stuff for K and I (water bottles we could refill, electrolyte juice mix, sunscreen, money, iPod, cell phone and other miscellaneous items that we might need.

So we left OS at 7am to head out and stopped at the Tim Horton's to get our breakfast and caffeine before we headed out on the venture (I got an Iced Cap and a Sour Cream glazed donut, K got an Ice Lemonade and Double Chocolate donut).  Just as we were leaving the parking lot we got a call that my cousins had forgotten their shoes and stuff for the water park.  So we went back to get those and started out again.  I don't know what I had thought, but I didn't realize it was a good 2.5 hour drive from OS to get there! We had to make a quick detour so J could stop at a bank to get some money out and then got to the park and found a nice close parking spot around 9:45am.  We took our time sorting out what had to go in each backpack (we had two one for me and one for J), making sure all the kids (and me!) were coated in sunscreen and got in line to get in to the park at 10.  We got into the park and got some maps and decided that we would just start in the one corner and make our way around the park.  The first thing we had to do though was to get K and D2 measured so that we knew what colour rides they could go on.  Even though there is only about an inch between the two we didn't really worry about it until the kids came back to us and K had an orange wrist strap on and D2 had purple.  They somehow managed to be in two different height categories!!  We didn't make a big deal of it though as D2 is pretty sensitive about his height.  The first non-roller coaster ride that we got to the two younger ones wanted to go on it.  So while K and D2 were on the "Spinovator" J and I made the choice that we might as well split up as the younger ones didn't want to do roller coasters much but wanted to see the dinosaur park where D1 didn't care about the dinosaurs but wanted to go on roller coasters.  We had each other's cell phone numbers and said we would stay in contact through text messages and that we could meet up in the early afternoon and regroup and figure up where we were going to go from there.  The kids wanted to try at least one roller coaster so we decided that "The Fly" would be the mellowest and least scary of rides. The boys were quite happy and excited to go on the ride right up until the last minute.  We go to get in the cart and the attendant said that I had to sit with D2.  So K was in the front seat by himself with the bag (that the attendant said was fine and didn't have to be left on the deck!) and D2 and I were in the backseat.  We hadn't even got to the top of the first hill and both boys were deciding that they no longer wanted to be on the ride!!  So I had one hand on K's shoulder in the front seat and my other arm around D2 in the back beside me and half way through the ride I her J and D1 calling me because the water bottle that was attached to our backpack had fallen out and was dragging along the track!  Well that ended up making me very very anxious!!  I had always thought the roller coasters weren't going to be a good idea for me because my joints but I never even thought of the POTS.  I swear my heart rate was at least 200bpm and I was shaking like a leaf while having to 'console' two kids who now hated roller coasters.  I had almost got them convinced to go on another ride right after that but they wouldn't have it so at that point I just basically gave up on the idea of going on rides and figured we would just get to the main attraction for them.

We headed to the back of the park and found "Dinosaurs Alive".  It was this big area and had over 40 life sized anamatronic dinosaurs in different situations.  It was at this point that I realized that J not only had D2's water bottle but she also had all of his money.  So I paid for the admission for all three of us (only $6 for the park and the 3D movie after) and we had a really really good time.  It was amazing to see just how big (and in some, how small) the dinosaurs were.  It was very very fun.  At the end of it was the souvenir store, the "Dinostore" so of course we all got some items.  I bought a magnet, a sand-art logo thing and was able to get four rolled pennies (I collect these from where ever I see them, have some from Florida, Baltimore, Toronto Zoo etc).  K also decided to buy his 'big' souvenir from her and got a glow-in-the-dark t-shirt as well as a key chain and a sand-art.  D2 wanted to buy a t-shirt too so I told him to call J and ask her (I was not going to be responsible for what he bought!) and while talking to J we figured out where to meet up again.  We met up just outside the "Action Theater" to watch "Dinosaurs 3D" (which J and D1 had to pay $3 each for admission).  It was okay but not as good as we thought it would be.  It was more educational than fun but still had really good 3D effects.  We come to find out at this point that J and D1 had eaten lunch before meeting up, and since we were at the far end of the park, K and I got some french fries and split a sprite at "Hot Potato".  We then quickly ducked into the "Snoopy Boutique" were I got a t-shirt for brothers ex-fiance's daughter (obviously didn't know of the split then) and K got this pretty cool pop gun.  We checked out our map and found out that a bunch of the shows were going to start soon so we decided to go to that area so we could catch a few.  At this point I figured it would be a good idea to get out some more money (had planned on using my debit card mostly but it was much easier with cash) so while D1 was on a quick ride with the younger ones watching I popped over to the arcade to quickly get some money.


We got back to the front of the park and went to the "Wonderland Theatre" at 3:30 to watch the show. "Cirque Ambiente" was amazing.  They had contortionists, jugglers, bike tricks, roller blade tricks and just a lot more.  It was really good and I think that after seeing it the kids actually liked it (they hadn't wanted to see the show but J and I insisted lol).  We were back in the area we started the day out at so K and D2 wanted on the "Spinovater" again.  J waited for them while D1 and I headed to check out the arcade for prices and prizes.  We decided it was too much but I did find another penny rolling machine.  We headed back and decided to stay in the area because the other show that we wanted to see was going to be on in about 30 minutes.  So I went and found a good place to sit in "Arthur's Bay" while J went and got  some of us ice cream at "Dairy Queen" and D1 watched K and D2 when they went on the "Spinovator" yet again.  We had pretty good seats and all really enjoyed the show "Kinet-X" which was a lot of high diving stunts mixed in with a good deal of martial arts that K was really impressed with.  At this point (almost 5pm) we decided that we should head out to the van and get our stuff to go to the water park.  We made one quick stop at this really cool kiosk in the medieval area then out to the van.  We quickly changed our bags over and put on sandals (instead of running shoes) and headed back in to the park.  We made a quick stop at the ride called "Backlot Stunt Coaster" but the line was quite long and no one wanted to wait which sucked as it was the one ride that I was looking forward too.

We got back to "Splash Works" and got one locker at "Splash Surf Shop" and got changed into our bathing suits.  I was quite surprised as K took his shirt off, he hasn't been doing that lately as he thinks he is too skinny (which he is but not unhealthy and we don't focus on it).  Ahead of time I had told K that we probably would only go on one slide together as I wouldn't be able to do all the stairs but at that point he didn't really care about the water park as he had got a scare on the little slide at the water park in our hometown.  We found a little free area on the grass and dropped off our towels and sandals and decided to go on the ride closest to us first.  We got our inner tubes and climbed all the stairs to the top of "Whirlwinds", this was when D2 and K were getting nervous.  D1 had no fears and went down first and then I suggested that maybe J should go down too and that way there was an adult down there to catch them and one up on the deck (me) to get them down.  It took a good five minutes but after all the "I'll do it if he does its" D2 finally stepped in the water and the attendant and I were quick to get him down before he had a chance to back out lol then K went down fine after that with my following him.  We then all decided to go on the "Lazy River" so all got in our inner tubes and gently floated through the water park so the kids could see all the different slides.  When we got to the end we had a a problem, or I had a problem.  I did not have enough strength in my legs to push myself out of the tube and there was nothing to grab onto so I could pull out of the tube so I ended up falling over the side, nudging my 'good' kneecap out of place and scraping the knee quite roughly.  We basically split up again and J and D2 kept doing laps in the lazy river while K, D1 and I headed over to the "Barracuda Blaster" which was awesome!  Slight issues as the lady at the bottom of the slide told D1 that you got the inner tubes at the top of the slide (which of course was wrong) so K and I ended up in a partially deflated tube and then once we got out of the basin part of the slide we ended up backwards down the last tube!  At the bottom instead of even trying to struggle out of the tube I just flipped over. When I came up above water K had wide eyes asking "Nini are you okay?!?!".  After that ride I knew that I couldn't safely do anymore stairs so after quite a talk with D1 I let him and K head off to go on other slides.  I managed to meet up with J and D2 and they were going to do one more slide so I told them I would meet up with them at "Whitewater Bay" when they were done.  We stayed there for a while then decided to head back to our towels as the water park was going to be closing soon.  When we got back K and D1 weren't back yet so J and D2 went on Whirlwinds again while I waited for everyone to get back.  K and D1 got back to the towel and rattled off what they had gone on (Body Blast x2, Riptide Racer, Super Soaker and Blackhole) and once J and D2 got back we went back to "Splash Surf Shop" to get changed before heading back out to the van once again.

After switching out our backpacks again (and switching to a long sleeved shirt for me and D1) we decided that it was time to get some supper (it was about 7:30) and figured the easiest and cheapest thing to do was to just get a large pizza and split it.  Well I knew K wouldn't eat pizza so we made a quick stop at "International Gelato & Gourmet Popcorn" where I got K some salt & vinegar popcorn (D1 got dill pickle) and then we went over to "Ristorante Pizza Pizza" and bought a large pepperoni and "Fresh Squeezed Lemonade" for some strawberry lemonade (pop for K)  and was surprised when K downed two whole slices of pizza (yay I got him back on another food!).  We then walked around a bit and found this carnival game that was Pokemon themed ("Pokemon Water Gun Game" is what we labeled it, aren't we original lol).  We played one game and D2 won and got to pick out a prize and obviously the kids wanted to play again so we did and D1 won that game but was very very kind and let K pick out a prize instead.  We then went through a few stores ("Locker Room" and "Thrills are Wonderland") until around 9 when J declares that she is tired and needs to go back to the van to rest for a bit.  I was not impressed with this as that left me with all three kids and I am the disabled one with many health problems and she decides that she needs a rest!!!  The kids and I went to one more store, "Streetwear Ladies Fashion Apparel" (which was nothing like the name implies) and I found a cute little stuffed animal for my friend who is currently pregnant.  The kids then wanted to play "Pokemon Water Gun Game" again and funny enough, K won this game and gave his prize to D1 and even though they picked out the same stuffed animal, they changed animals so they got the one chosen from their winning game lol.  Around this time my cell phone rings and when I pick it up it's my mom.  She asks if we are almost home and I laughed saying we hadn't left yet and wouldn't be for at least another hour.  She was slightly shocked I think but said she would leave the door unlocked (realized then we didn't have a house key).  We then stopped off at a little souvenir kiosk as D1 hadn't got himself a souvenir yet then headed back to the front area so we could get a good seat for the light show.  We were only there a few moments before "Starlight Spectacular" started at 10 and was really entertaining and the kids loved it.  All through this time I had been texting J to see where she was as I thought she was supposed to be meeting us to see it but kept getting no reply so gave up.  We stayed a few minutes after the light show to see all the fountains light up in different colours which was really pretty before heading back the final time to the van.

We got back to the van around 10:30 and got things organized for the trip home.  Made sure all the kids had used the bathroom, everyone had a drink, a comfy place where they could sleep (we hoped!) and snacks in case they wanted anything to eat.  J was going on about how tired she was and she even stopped off at Tim Horton's and got herself something to drink (didn't ask if anyone else wanted anything which was annoying and I wasn't in the best of mood with her at that point).  I told her that if she was too tired to just let me know (and get me out of the heavy traffic of the city) and I would drive the rest of the way home.  I figured she would just brush it off and keep driving as that was part of the agreement of her doing the driving.  But after about 1.5 hours she was obviously tired so we pulled over and I took over driving the last hour home.  We got back to nan's and sent D1 and D2 back to their place to go to bed, J went home and K and I went in to nans.  K didn't even change his clothes and just fell into bed sound asleep (both him and D2 slept the majority of the way home, D1 listened to his iPod so it was nice and quiet).  Of course, lovely POTS issues as they are, I was wide awake.  Was on an adrenaline high so even though we got home around 1:15am, I didn't end up falling asleep until 3am which meant I had been awake for 20 hours straight!!  It was a very good day and surprisingly I didn't suffer all that much from it which was a definite bonus.  More about our holiday week in the next post or so.

Summer Fun Part 1 - Concert Weekend

Every year my town (well the biggest town next to it) holds a music festival for a weekend.  Generally we end up with quite a few big name artists coming and when I found out that Hedley would be here this year I knew that I was not going to miss it! Really regretted not going to Marianas Trench last year, wasn't doing that again.  The big question was - who was I going to go with.  When tickets went on sale that was not a big question though and I went and bought two VIP tickets as I knew I could find someone to go with.  At first K (10 year old nephew) thought that he might like to go with me but quickly backed down for some reason.  So I sent my friend S (went to university together and hadn't seen each other for three years at this point, though we kept in contact through MSN and emails) a message and asked if he wanted to go. He wrote back that he hadn't heard of them (What?!?!?) but would love to go.  So I sent him the list of the other performers for the weekend and he wanted to go see The Offspring too so I bought tickets for those, though not VIP because they were quite a bit more money being the night headliner concert (Hedley was the afternoon show).

I guess I should explain what VIP means at this festival (No I am not going to give the name of the festival as I like to keep a little anonymity on this blog as it is quite personal - but it wouldn't be hard to figure out if you really really wanted to).  The stage is set up in the front (obviously) and then the audience section is divided into two equal parts - the licensed part (over 19) and unlicensed (for underagers or family).  Right in front of the stage (about to where the sound and lighting booths usually are) is divided into a further four sections total and that is the VIP area.  With VIP you get closer to the stage (obviously), your own beer tents, washrooms, separate entrances and places that you can sit down.  The worst VIP 'seat' is still closer than the best General Admission 'seat'.

So I picked S up from the train station late friday night.  We got home and basically talked for a short time then went to bed as he was tired from work and then the 5 hours on the train.  Saturday we spent a lot of time with K which was really neat to watch.  We took S under the bridge to see the boat races that were going on, to the fish hatchery, to get french fries and to just walk around.  At one point K wanted to go down to the little 'beach' area but you had to climb down these big rocks laid out like stairs and I knew that I just couldn't do it so S told him to come and K followed him down.  S showed him how to skip rocks on the water and they looked for cool rocks and shells and just goofed around.  At one point S play shoved him and K almost lost his balance and S very quickly grabbed him so he didn't fall.  It was quite cute lol.  We then went all the way to the other side of town and went to play mini golf, which S won, K got second and I lost.  We stopped at the store and got some movies and then headed back home for supper.  After supper we watched the movies that we rented (Sherlock Holmes and Moneyball) and tried to get to bed semi-early as I knew it was going to be a VERY busy day the next day!

Before we left that morning dad had suggested that we take umbrellas as it was supposed to rain that day.  According to the list of 'unallowed items' on the website umbrellas would not be allowed so S and I just hoped for the best and headed out.  We stopped quickly at the variety store on the corner to take the movies back and we rented the second Sherlock Holmes for the next day to watch.  We drove into town and found a parking spot that didn't seem to bad (and was free) until we started walking and realized that we were on the absolute opposite side of the venue that we were supposed to be at.  It rained a few drops on and off while waiting and then just as we were about to line up I realized that I left my wallet in the van and that I definitely needed it.  Thankfully S told me to just grab a seat on the hill and that he would walk back and get it for me!  I would have been so beat if I had to do that trip another two times!

Once we got in we decided to walk around and see what was going on in the different sections (you could move from VIP to GA but not GA to VIP).  I found the merchandise booth and bought myself a Hedley t-shirt (and got a plastic bag - very important later!).  There was even a Ben & Jerry's both where you could get free samples, you can't turn down free ice cream :)  The first act, USS, came on around this time and during their set (lasted about half an hour) S and I just kept edging our way closer to the stage.  After their set we went and got some drink tickets and got a drink (pop for me, beer for S) and went back to the stage area.  It kept raining a bit on and off during this time but not too had.  It was funny when Big Wreck took the stage as all the licensed side knew the songs but none of the under-agers did so they basically played to the 19+ crowed.  I knew most of the songs and they did quite a lengthy set of about 45 minutes.  As I had to buy two drink tickets (one ticket got one alcoholic beverage or two non-alcholic drinks) I went back to the booth and got some water, thankfully the lady there let me keep the lid briefly so I could put in my squeezy electrolyte juice in to keep dehydrated.  I then had to give it right back to her as they wouldn't let lids in the audience (they can be projectiles I guess).  When I got back to our 'spot' in the crowd it soon after started to massively rain.  We got completely drenched and I was very lucky that I had bought a t-shirt.  Why? Because I got a plastic bag to carry it in!  So I put all my stuff (wallet, phone, camera etc) and Scott's phone into the bag and tied it up because everything in my purse was drenched (it was a canvas material purse).  A few minutes later we got poked on the shoulder and these two girls behind us begged me to put their phones and cameras in the bag too, which I had enough room for so I did of course.  The set was delayed for 45minutes so started at 3:45 instead of 3.  To make things easier for me I am just going to post the setlist and the few notes that I made during / after the concert instead of typing them all up.  So here it is:

• One life
• 321 /On my own / Streetfight
• She's So sorry
• Bullet for Your Dreams
• For The Nights  I Can't Remember**[Jake on Piano]
• Hands up (Space Oddity Verse)
• Sweater Song [[Jake's Favourite Song]]
• Stormy**[Jake on Piano]
• Invincible
• Kiss You Inside Out
• Hot Mess
• Old School
• Don't Talk To Strangers
• [[Special time of year , 3/4 band summer b-days, no gifts throw what's in your hands on stage, best birthday is goody bags, band played "Beat It" while Jacob shot T-Shirts out of a cannon]]
• [[Band Intro - Tommy from Hometown]]
• Don't Talk To Strangers
• Never Too Late
[[Downpour!!!]]
[[Encore- "throw me all your pennies!!]]
• Cha-Ching

As we were leaving the VIP area, Jacob comes out from backstage on a Segway and gets stuck in the mud pit and managed to fall off not once but twice.  Security VERY quickly grabbed him and yanked him back stage again. We waited a bit at gates to see if they were going to sign autographs but some band members left in a van so we gave up on that and headed to the van to get semi-dry.  Got to the van and emptied out all our pockets and found some blankets and stuff to sit on.  I called home quickly to see if they had had supper yet (they had) and to let them know we were coming home to get changed.  My dad just laughed and said "Well you lasted a lot longer than I thought you would!".  We drove home (about a 20 minute drive!), got in the house and my mom just looked at us and laughed.  She asked if S was allergic to any soaps or not and told us just to throw all our clothes in the tub and she would take care of them.  We quickly got changed (and I had to find another purse to use) and decided to go and quickly grab a bite at Taco Bell where I ran into an old friend who also was at Hedley so it was nice to see her even though I think S talked to her more as my mind was just not working because of all the stuff going on (pain, tiredness, dehydration etc).  We went back into town and this time, since my legs were already painful, I decided that we were going to pay for parking so I didn't have to walk as far.  It wasn't bad as we parked at the Humane Society for $10 and basically parked right at the end of the venue.  Basically as soon as I parked the car the rain came pounding down again.  Since we didn't really care about the first opening act we decided to just sit and rest for a few minutes and wait for the rain to die down.

The rain finally stopped so we headed into the venue.  Papa Roach had already started but I didn't mind.  You could barely understand a word that he said and every other word out of his mouth was a swear word, which I found wrong at a 'family friendly' festival.  I think I only recognized one or two of their old songs.  S and I walked around a bit and went to the merchandise stand again where I bought a Simple Plan key chain and necklace (didn't know if K would want something as he likes a few of their songs so I bought two souvenirs).  For some reason they put Simple Plan as the second opening act which has nothing to do with Papa Roach before them or the Offspring show after.  Because of this a lot of people left after Papa Roach so S and I were able to slowly get close to the barrier dividing VIP from GA. Simple Plan came on and were pretty good and after a while a lady went by the front of the barrier once handing papers to a bunch of people which made it so that I was right at the barrier and S (who is quite tall) was right behind me.  about 2/3rd of the way through Simple Plan's 45 minute-ish set the lady comes back through and hands me a free upgrade to VIP!  However because S was behind me, he didn't get one.  A younger man was walking behind the lady and I called him and asked if I could get another one for S.  He looked at me, then looked at S and smiled and handed me another ticket.  So we both got VIP upgrades (about $100 worth) free for the headline show!.

We grab a couple of drinks along the way and head up to the VIP section.  Because Simple Plan was still on, it wasn't too crowded and we were able to get really close to the stage.  The Offspring finally comes on around 10pm (was supposed to go on at 9), and starts in on their 90 minute set.  However, there was a downside to VIP.  The section became a full on mosh pit with crowd surfing and fighting.  Mosh Pit + EDS = Very Very Bad!!! At one point a crowd surfer came our way and ended up falling on me.  S was very concerned especially when I told him that I was okay, my shoulder dislocated but went right back in.  S then went in to full on protector mode.  He made sure to keep himself between me and the rowdy guys, would take my arms and move me out of the way, and he probably got a lot more bruises protecting me than I actually did!  However it wasn't all bad, the show was really quite good and I was surprised that I knew a lot more of the songs that they did than I thought they did.  It rained through the show a bit as well so thankfully even though I was absolutely drenched in sweat, everyone else was also drenched because of the rain lol.  I enjoyed the show but also was starting to hope that it wasn't going to be too long as my legs were really starting to hurt. 

At the end of the show we were able to get back to the van quickly because of our parking spot and actually were able to see the band's tour bus exiting the venue.  There was so much traffic that we just sat in the van for a bit and got a drink and finally made my move to get out of the parking area.  After a good deal of time, and lots of police directing traffic, we finally got back to my house around 12:30.  We talked for a little bit and then I went to have a quick shower and headed to bed yet don't think I even fell asleep until 2am :S

On the Monday, S 'let' me sleep in a few extra hours.  I hadn't planned to but I guess after he told mom about the show the night before (and said he felt bad that I got pushed around so much in the mosh pit) they kind of decided together to let me get a bit more sleep which was really really nice.  After getting some food and figured out what we were going to do that day, we went and watched Sherlock Holmes 2.  Well more accurately, S watched SH2, I probably saw about 50% of it in short segments.  We then went out back and S and K went for a swim (I decided to stay out since I could barely walk!!!) then we had some supper and it was time for me to take S back to the train station so he could get home.  We swore that this time we were not going to let three years go without seeing each other!  After he got on his train, I had a few last minute errands to run as we were heading out the next day on another adventure!!

Mad at EDS

Well I am officially mad at EDS.  I have always always took pride in the fact that I never (and would never) let it interupt my time with my nephew. (I also realized I have never really mentioned important things about my nephew which I will at the bottom).  Even if I was sick, I still went to his activites.  I have never missed a grading for his karate, even though one time I had the flu and couldnt keep anything down (stayed near the bathroom for that one!) and have also been on crutches during one and many various other minor health issues.  That was all until today.

A week or so ago, K brough home a permission form to go to see the new Disney movie 'Chimpanzee' with a bunch of the intermediate and senior classes at the theatre in town.  They wanted some parent volunteers so I asked K if he wanted me to go and he definitly did so I signed up.  Yesterday mom went in and talked to the teacher about it and found out that I could ride on the bus and go as a chaperone instead of just a 'parent'.  Kyler was excited and I was so happy to have a field trip that I could actually do (can't do the outdoors type of trips or anything physical so am limited to what trips I can go on).

Last night we were at his karate class (he got a stripe :) ) and I went to move over on the chairs to get a better view of him and my right knee shifted at the same time as a muscle spasm and subluxed pretty badly.  Mom was very worried and I apparently went white.  Of course I didnt bring my purse so even if I wanted to go to the ER to get it looked at (and documented), I didn't have my health card to do so.  I also didn't have any of my pain medications or even some advil to counteract the swelling.  Once class was over I managed to get up and get to the van so we could go home.  I got that lovely trifecta of pain - nausea, cold and sweating for the entire ride home.  We got home and I got changed and headed for the couch where I put ice on and off it for the rest of the night.  Mom looked at me before I went to bed and 'told me' that I was not going on the trip as I couldnt sit in the theatre seats that long and being on the bus (with steps) wasn't a good idea. I reluctantly agreed.

So today mom went in and told K's teacher about what happened and she was slightly shocked at home much damage I could do without actually doing anything.  Mom told her that this was why I couldn't normally volunteer for things as I never knew what was going to happen and always hated to have to cancel.  K's teacher was sympathetic and told mom to tell me to not worry as there would be enough parents at the show so she wasn't going to be short on volunteers.  I still felt horrible, not because I wasn't there to help the class, but becasue it was something I told K that I was going to do.  Mom talked with him this morning about it and he seemed okay with it (he knows the basics of EDS and also lives with me day to day to see the actual living with EDS) but it still bugs me.  I was almost in tears when he got home and I apologized to him.

This was one aspect of my life that I refused to let EDS take over.  He had a pretty crappy beginning to life and I was never going to let EDS define anything about our relationship.  To those that don't know the breif story is that when K was born he lived with his mom until he was 6 months old and she had a nervous breakdown (she has schizophrenia and now lives in an assisted living complex as far as we know) so K lived at my parents house with my brother for a few months that summer (I was also at home because it was school break as well as I had just had major knee surgery) and after a few months children's aid thought he could handle K alone so my brother got custody of him when he was around 8 months.  I never liked this set-up and knew from day one that at some point my parents would have custody of him (during the time at our house my brother was stealing my pain meds so I knew something was up).  I went back to school and things seemed 'okay'.  I got a call the next march from my mom letting me know that everything was okay but K had been removed from my brother's custody and thankfully was now in my parents custody for the time being (we had discussed this outcome before and my parents said that the main goal was we never wanted K to go to foster care and that my parents would do anything they had to do so they could get K).  K has never left our care since.  Both parents gave up their rights and were glad that my parents had custody so thankfully it was an easy case with no disagreements.  When I finished school and my health declined so fast I was fortunate enough that my parents had no hesitations about me moving back in full time, it was just expected and actually made things a lot easier as at that time both parents worked full time (both are retired now) and they had K to look after so I stepped in and did what I could to help out.  So that is where we are now, my parents house and they have custody of K and I live there as I could not manage on my own.

As I learned of the EDS I immediatley knew I wasn't going to be having kids but realized I lucked out and get to have the same experience and love with helping to raise my nephew.  Just sucks that after fighting so hard EDS finally won out today.  I will be doing everything I can to make sure that it never happens again!!!

My Birthday

Just a quick post as it is starting to become a bad pain night and I think I am going to curl up in bed pretty soon and just read my book for a while.  I know it has been a while since I have posted (yet again) but you all understand why posts can come few and  far between at times and other times I could post multiple times a day.  For today though, I thought I would post about the really weird birthday 'theme' in our family.  In case you didn't know today was not only my birthday but also my nephew's birthday.  We were born on the same day exactly 20 years apart, but that is not the strange thing about our birthdays.  The somewhat creepy and cool fact is this:

My grandma on my dad's side was born on August 27th and gave birth to her first born child exactly 8 months later on April 27th.  My dad then had his first born child (my brother is adopted) 8 months later on December 27th.  Exactly 1 year later and my nephew, the first of that generation, was born.  So to summerize:
Nan - August 27th
Dad - April 27th
Me - December 27th
Nephew - December 27th

Not only do we happen to like the 27th of the month, the very strange fact to add to this is that I was born at 29 weeks (3 months premature) at 11:46 pm.  Another 14 minutes and I would have been a day later. I was actually supposed to be born on March 17th in case you are interested.  Then, my nephew, was actually about one week overdue!  So add in we have 4 generations on the 27th, and two of those were not supposed to be on the 27ths at all.

Funny thing is that my dog was born on July 29th but the vet has his birthday marked down as July 27th even though I point it out that it is wrong every time that we are there!  Another strange birthday fact in our family is that both of our dogs were born on the 29th.  My dog is July 29th, our other dog is June 29th.  My mom and my brother's step daughter also have the same birthday, my cousin and her nephew share a birthday and I have an aunt and uncle that also share a birthday.

We had a good day.  Mom and I went to pick up the dogs from the 'pet resort' that we take them to when we go out of town then we came back home and I decided that I would rather a few more hours of sleep in my nice waterbed (did not sleep well the last few days as I was sharing a futon with my nephew and lots of stress going on) instead of going into town and doing some boxing week shopping.  I got up then and gave K his birthday present from me which he loved.  I got him a few halo lego sets and he thinks he is getting away with something lol.  I keep telling him that he is allowed to play with the lego but dont even think about asking to play the video game.  He gave me his gift to me which was a little zebra plush stuffed animal and some chocolate coins that he picked out all on his own because he knows I like zebras.  We built and played with one of his new sets (bought him two) for a while before we had to get dressed. Got dressed and still had to wait like another hour and a half until my brother and family decided to show up.  Had our traditional birthday meal of chinese food and then had our dessert.  Because of us sharing a birthday it doesnt make sense to buy two cakes and since I have always loved ice cream cakes, we now get K a birthday cake (cupcakes actually this year - half vanilla and half chocolate) and I get an ice cream cake (Supposed to be half cookie dough blizzard and half reese's peanut butter cup but it ended up being just the top layer of cookie dough and reese's mixed together).  Kyler then opened his gifts (a bunch of Lego kingdom sets from my parents, movie and money from my nan, money from my aunt and money from his dad) and I opened my cards (money from my parents and from my nan).  J (step-niece?) wanted to sleep over so for some unknown reason mom agreed to it (not impressed!) and later (when my brother decided to finally drop off her PJ's) we all started watching "Kung Fu Panda 2" and J fell asleep soon after.  And basically that brings us up to this point in time with me writing up this entry.

Okay, that was enough for tonight, my shoulder is starting to cause me a lot of problems and does not like being on the computer too much anymore which really sucks as I live on the computer!  I do have some other posts that I need to get up soon.  One of them I wasn't going to post as it was a doctor's appointment that went so horribly wrong that it was actually funny, so I figure you guys might like the laugh (and want to document it for my 'records' as well).  Then there is a post about a 'doctor' that believes my cousin (well my cousin's son) has EDS and one about how my body, and family, is not liking a lot of scents and fragrences anymore.  Those will come within the next few days hopefully!

I hope everyone had a great holiday season and all the best for the coming new year!!!

Things going pretty well

Making some pretty good progress around here. Some of it for me, some for others.  For me, as my nephew is my number 1 priority in life, the most important part is that my dad has decided that maybe we should try medications for his 'inattentive adhd'.  Mom agreed and has made an appointment to see the doctor about it next week.  Mom does want to ask a bunch of questions as she is worried because K is a very very poor eater and one side effect is lack of appetite.  Secondly it can cause problems sleeping and K wakes up most nights in the middle of the night and is wide awake for an hour or so (he reads his book while he is awake).  We are going to try a few things about the sleeping issues and as much as I don't want K to have to go through bloodwork, I really think he should get checked out vitamin and health wise to make sure he isn't missing anything important (he does take a daily multivitame and does eat a bit from each food group except meat, but he eats eggs for protein).  I think dad changed his mind as he has seen just how frustrated and upset K gets when he forgets things and how he gets really down on himself for forgeting things or not grasping what you are trying to tell him and none of that is his fault.  We won't lose anything by trying the medications route.  If it doesn't help him it's no big deal and we just stop giving them to him but I would rather do that than look back in ten years time and go through the 'what if's' of what could be done for him.

Secondly, I go in next tuesday for a Barium Swallow Test.  Really really not looking forward to this but am hoping it will provide some answers.  I am having issues eating certain items.  Any meat with an ounce of fat on it, I can just not swallow.  Breads are another no-no.  Certain textures just won't go down either.  I can eat only very small quantaties between the horrible heart burn (already on omeprazole for this) or the intense nausea I get once I start eating.  I am having problems with feeling like I am getting something stuck in my throat all the time.  Feels like I have no gag reflex at all.  I take a pill and can feel it still in my throat and have to take another drink of water for it to go all the way down.  I 'choke' on water when drinking so stick to a straw 90% of the time as that seems to help.  I have also had the feeling for a very long time that my esophagus (I am horrid at spelling) gets kinks in it that are semi-painful that I have to rub my throat and try to get it realxed before things feel better.  However, I am also very nervous about this test.  From what I have read it sounds basically like a tilt table test to check what you are drinking.  I can have nothing to eat or drink from midnight the night before and thankfully I am an early morning appointment slot.  I am assuming that I should stop the omeprazole before the test so that the GERD will show up but I am not sure how long before hand.  Als I am worried about the autonomic stuff if this test is in fact like a tilt table. One the one hand I am thinking that maybe I should skip my dose becasue I will be fasting and don't want a repeat of what happened after surgery but on the other hand I am thinking that I should take an extra dose to counteract the possible POTS flare up from the movement of the test.  I am going to call my GP tomorrow as I have to make an appointment anyways and ask them about the medications, sadly though they have really no clue as to the autonomic issues to truly understand.

So basically two good things progressing around here which I thought I would share with all of you.  I am glad that my parents have finally opened up to the possibility of medicating K.  Don't get me wrong, I hate the fact that K might have to take medications but if it helps him to truly reach his potential I am all for it.  He is above average in intelligence but tests way below that level.  I just want him to get some self-confidence in himself and have him realize and accept that he is really one smart kid.

If anyone has had a barium swallow test and has any ideas / suggestions about the medication issues I am dealing with (mainly the beta blocker) I would to hear them!  If you have done this test and have suggestions let me know too please :)

K's Birthday Party

Since K has a Christmas birthday (which is actually also my birthday, he was born on my 20th birthday) he never really gets a birthday party.  He has a party two years ago for his 7.5th birthday but we never threw one last year.  So he was overdue for a party so we decided to through him a "Happy 9 1/2-th Birthday!".  Becasue of the layout of our house, having a bunch of 9 - 10 year old boys over was not appealing at all so we made it a 'destination' party of his choice.  He got to pick from lazer tag, bowling or a movie.  Since a friend had just had a movie party he decided to go with lazer tag.

We invited seven kids to go (to make it an even eight) but one couldn't make it so it was K and his friends - A,C,N & T from his class, B from one grade up and J from one grade down (the just live up the street and are good friends of K's).  We booked everything for the 17th and it was real easy as the lazer tag place also offered a package for two games of play, pizza and pop for all of them.  That left not that much to do.  We went over at the beginning of the week and let him pick out which cake he wanted (He decided on a cake that had ice cream cones cut in half and filled with icing all around the cake and it to be done in green) and mom also got a pack of cupcakes in case the kids didn't like the chocolate cake.  Mom picked up some vanilla ice cream, some cotton candy and some 'sprinkle party cake' ice cream to bring along with us as well.

(Moment of honestly here; Beware of ranting and annoyance)

I will admit at this point that I wasn't too happy about this party.  When we had his 7.5 party mom complained about it all and said that she was never going to do this again and I was in charge of birthdays.  Over the last two years I have asked multiple times (for his 8th, 8.5th and 9th birthdays) and she kept blowing it off.  Once my dad decided that he was going to have a birthday everything was set up in the matter of days with no one asking me about it.  I didn't find out about it until the date had been booked for the party!!  After that, anything I questioned about the party I got snotty remarks about how I can never be pleased and just want everything done my way.  I only questioned two things - What kind of pizza and to see if just a plain cheese one could be ordered (it was set up as just pepperoni that was being served) seperatly to be ordered for the party or if we could pick up our own food to be ate there during the party.  Well neither of these questions were even asked of the place so K had to have supper before we left for his party because he would not like any of the food there (to me that just seems so wrong!).  The second issue is that I asked mom multiple times to find out if we could decorate the place to maybe have a theme for the party.  I had even said I would go in early to set up and decorate but was told it wasn't needed.  I mentioned about how K had pointed out a bunch of decorations in the store that he thought were 'cool' but mom still never asked and basically told me to forget about it and that it wasn't important.  I had wanted to do decorations so that I at least had some input into the party but was shut down repeatidly.  Then I was really pissed off as mom decided that me, her, B and J would go in early to see if anything needed to be done and in the box was a handful of decorations to be put up!  Nothing K would have choosen mind you but still.  I worked at getting everything out on the table (cake, goodie bags, plates, presents etc) and for it to look nice and I tried to keep it that way and not let mom or dad put non-necessities on that table but it was a hard fought battle!

(End of rant, back to the party)

Mom, K and I went in to town on monday to figure out what we were doing for grab bags (or loot bags as mom kept calling them even though K had no idea what a loot bag was and questioned every time she said it).  We were just going to pick up the normal dollar store type of stuff but then mom decided that she would rather get a few actually good toys instead of a bunch of crappy toys.  So in the bags ended up - a tech deck, pack of go-go's, bookmart, ipod eraser, aero chocolate bar, tongue tattos, 3 pack of gliders, fruit roll-up, fizz candies, high bounce rubber ball and a small water gun.  Since mom and I were working at the book-fair that week, we had to fill the bags up on wednesday to get them all ready to go.  Only one small problem was that the gilders didn't fit in the bags so we had to give out a bag and then the package of gliders.

So friday comes along at mom, B, J and I leave a little bit early to go and get things figured out.  We get in there and I put out the cake, cupcakes, goodie bags etc on the one table that they have and we got enough tables and chairs that we would need.  There is a 'ball room' in there that is a large room with a netted ceiling and one wall that has a soccer / volley ball in it for the kids to play.  The kids all played in there until everyone had arrived.  The told us they could go in for a game of lazer tag at this point so off the went.  However, about ten minutes later we notice that another group is going in to the 'arena'.  I was kinda annoyed by this as we had booked a party and shouldn't that mean that our kids all got to go in at once with no one else or other groups in there.  Mom and dad just brushed it off but I went out and talked to the guy in charge and told him my thoughts and then he said that he would make sure their second game was just them.  The pizza was delivered about half way through their first game so when they got out we had supper (20 slices of pizza for 7 kids and 3 adults) and the kids went to play in the ball room.  Some time passed and then the arena was open so our kids went in again and this time no other groups were allowed in thankfully.  I asked the guy if I could just get a few pictures of them inside for my scrapbook and he told me to just go ahead in and that I could stay as long as I wanted to get pictures and for me to just watch my step (really dark with ramps and stairs etc).

After the second game the kids came out and we had birthday cake and ice cream, or we offered birthday cake and ice cream, not many kids wanted any of it, they did all down another can of pop though!  Once everyone was done and we had cleaned up we called the kids out of the ball room over to do presents.  K did pretty good lol, he got an MP3 player (since when is that a kid's birthday party gift?), $25 gift card to Toys R Us, $30 cash, a super soaker and beyblade and a paper jamz guitar.  He was a very happy little boy!  As there was still about half an hour left of the party we told then they could go back and play in the ball room.  N's mom arrived to pick him up as they were heading out to their trailer but we had arranged it so that we would be driving all the kids back to our home town (the lazer tag was about 20minutes from our town).  Dad was watching our group in the ball room and another group of boys, slightly older, came in to play as well.  After a while dad left and him and mom were taking things to the car.  That's when things went bad.

J (remember he is the youngest out of them all) came out of the ball room sobbing and clutching his stomach with B (his older brother ) right behind him.  I asked what happened and he tells me that one of the kids in their kicked him in the stomach and that they were being rough.  I went right to the opening of the ball toom and yelled 'My kids out NOW'.  This is the part that shocked me: as my kids were leaving the room all the others were hooting and hollering about the losers and cry babies and on and on.  I got them back to the party room and the others than came to the window (an open spot in the wall with fencing on it to keep the balls in) and started banging on the fencing and calling my boys wimps and how they were losers and it just kept going and then they started saying inappropriate language for a family party center.  The shocking part?... There were FOUR adults sitting at the tables watching their group behave like that an not a one said anything!!  My parents came back in, saw our kids out of the room getting mad, J just crying at this point and T getting rerady to go in and fight the kids (I had to grab him by his shirt at one point because I was concerned he was going to go and get in to it with these kids!).  We very quickly just grabbed the boys, took the goodie bags (we hadn't even gave them out yet!) and walked right out of the place.  While in the parking lot our boys were still all hyped up and ticked off so mom, dad and I were trying to get the story out of all of them.  Finally we gave out the goodie bags and divided them up between the two cars and headed home.

About half way home B mentioned something about how one kid was annoyed becasue J had broken his glasses.  Mom and I just looked at each other and we both knew that if it was one of our kids misbehaving it would be J.  So stories start going around and we find out that J and T weren't too innocent in the whole matter.  But still, if one of our boys had hurt one of the other boys they would have been pulled out and made to apologize to that boy.  Secondly if my kids had of behaved like the others did when I pulled our kids out, they all would have been pulled out of the ball room and made to sit and behave.  We would have stepped in and done something, no way we would have let that go like those other parents did!

Any ways, all the kids got into their goodie bags on the way home and we kept hearing "OMG I love tech decks" and "Which tong-too did you get, want to trade?" and "Aero is my favourite" and "I love fruit roll-ups".  So we seemed to do a really good job on the goodie bags and Kyler had a great time and that is all that mattered at the end of the day.  Not sure I would plan another party there but still the kids had fun so it was a good night.

So Proud (and breif incident with mom)

So K got his assignment for his big project of the year and it was to build a castle and then be able to tell details about his castle.  We got all the supplies for the project and were going to take the weekend to build it.  I know that he has trouble staying on task and would need multiple breaks so we figured we would take all of saturday and sunday to work on this.  Then mom throws a wrench into the plans stating that brothers' GF and her daughter would be coming out on saturday and brothers GF was thinking of going to watch her mom play baseball while mom watched her daughter (4 year old highly active little girl).  I was very upset about this as that would be one massive distraction for K and I knew we would be getting no work done while they were there.  Turns out they were running out of clothes and needed to do laundry so mom went in early on saturday to pick up their laundry and worked on it thoughout the day.  She did finally admit that she wasn't thinking and that I was 100% right about K and too many distractions while doing the castle.

So between Saturday morning and Sunday evening we made a concentric castle that with working drawbridge and front gate that we were all very proud of.  Then came the harder part... writing up a speech for K to give to hsi class!!  K has very bad short-term memory because of the issues he has so we knew automatically that there was no way he whould be able to memorize a speech so we were going to have to write one up that he could read to his class.  He did really well making it though, I typed while he pointed out all the parts of the castle, what they were for and what he made them out of.  It took very little time as he was very comfortable with the material he was talking about.  So we printed it off, put in cues as to when he was supposed to point to something and that was that.

Fast forward to Wednesday night when mom and I were working the book fair at his school.  His teacher came in and pulled mom aside to tell her that she knew we were very busy (an understatment!!!) but she just had to tell her that K was excellent with his project.  She said other classes came into the gym to see all the castles and ask the kids questions and many said that they liked his castle.  Then she went around and when she got to him she confessed that she just kept asking questions until she could trip him up.... except she couldnt as he answered every single question perfectly!!  She was so proud of him and knew that we would be as well.  We don't have a final grade for it yet but just the fact that he was so comfortable with the material and did so well, the grade doesnt really matter.  He did more than his best and that is what counts in this family and especially with him!

My nephew's doctor appointment

Well the actualy doctor's appointment went pretty much as how I expected it in regards to the doctor's news.  It went pretty badly though in regards to my parents reactions.  Well really it was my dad reaction that bothered me and I have to honestly wonder if their fears about what most likely won't happen is hindering them from actually helping him to succeed in school.

Okay, so basically and to the point he feels that K has 'Inattentive ADHD' (He says that there is no ADD vs ADHD anymore, it's all ADHD even if the kid isn't hyperactive - which K definitly is not!).  He strongly suggests medication, and since my mom mentioned before that they were very hesitant about medications, he suggested that the best medication for K would be "vyvanse".  He says it is the most non-abusive option of medication and a non-habit forming medication.  He feels that K would greatly benefit from medication but also acknowledges that most families prefer to expore more conservative measures first before moving on to medications.  He also did say that for the most cases he has seen these may provide results but they never seem to last for the long term.  He also made sure that we knew that even if we decide to not go the medication route, he is still there if we run into problems or need his help with anything.

My parents, especially my dad, are completly anti-medication in regards to K.  It does really really bother me becasue of the status of my own medications.  My parents feel that since K's father and mother are both drug addicts, that K has a higher chance of becoming one as well.  This is true, I don't argue that point, however both the mother and father started drugs by basicaly self-medication.  His dad most likely had ADHD (and possible other mental health issues) and his mother has either schizophrenia or borderline personality disorder.  And it is a well known fact that a lot of people with ADHD that go untreated turn to drugs in their teen, or later, years. 

Okay so now for what my parents, well my dad, majorly disliked about the appointment (and my thoughts on it:

• The doctor would not shake hands.  Dad offered him his hand and the doctor apologized and said that he didn't shake hands as a practice with being a peditrician. (Maybe this guy is OCD or a germaphobe, I am sure it is not just my dad's hand that he doesnt shake!)
• Four forms were filled out (done by: dad, mom & I, his teacher and the resource teacher), he commented that 3 of the forms were basically the same but the fourth showed some inconsistancies that he wanted to ask about.  Of course that fourth sheet was the one that dad filled out and he felt that he was being called out (Of course dad's would be different, he doesnt deal with schoolwork at all and just does enjoyable activities with him, the doctor was just asking how his perception was different than ours)
• He didn't like the analogies that the doctor kept using and felt that he was being talked down to by the doctor (He's used to kids so uses basic analagies all the time, he was just trying to make sure his point got across clearly)

Basically he just made sure that everyone knows that he could not stand that doctor but basically, he was not going to like the doctor just becasue he gave proof that there is actually something wrong with K.  Nothing has been discussed about the matter at all in the house and I believe that the paper that had the medication name written down was thrown out.  I just remember because I saved it for the time that hopefully my parents see the light and realize that medication might just be the best route for K.  He is a smart kid, his IQ type tests all show that he is getting marks well below his ability.  He is getting frustrated with school because of his issues and that is just not fair for him.

Long day.... (and health update)

I was up around 9:30 this morning (very early for me) so that mom and I could attend an assembly at K's school.  Because I help with the bookfair three times a year and mom does that as well as having kids read to her once a week, we were invited to a 'thank-you' gathering at his school.  We got to see some of the year end 'awards' handed out and then all of the volunteer's got a nice yellow carnation, a small box of Laura Secord Chocolates (only two, haven't tried them yet) and a thank-you card from one of the students.  We then headed to the library were there was a nice fruit tray and cheese tray as well as some drinks for us to eat.  We got things figured out for the book fair next week and left there around 11:30. 

Mom and I then headed into town to do some shopping.  Well, correction, a LOT of shopping!  Got a lot of great deals though!  Only went to four stores but it felt a lot longer!  We went to:

• Zellers - got a shirt on sale 50% off, a DS game for $10, two books that were $3 each and a CD for $1.  (Mom picked up quite a few good deals including the U-build Sorry game and a travel edition of Battleship for us to take up to the cottage with us in July so he has something 'new' to play)
• Sears as my friend is registered there for her wedding (had to order the gift though as they had none in store) and I got a great deal there!! (Skirt - normally $35 on for $15, capri's - normally $30 for $19)
• Pennington's - 2 pairs of shorts and a shirt that was 50% off (Mom got two pairs of shorts too, going to have to write our names in them though as we are the same size and there are only two colours!)
• Walmart where I just got Shaggy some bones and dog food (even that was on sale! normaly $10 got it for $7) and got one of the X-men movies for K and I to watch - normally $15 and I got it for $5

After we were done at Walmart we went over to a restaurant and got take-out fish & chips for supper (this place is really good, all the day is fish and chips) and came home to eat it.  After that and letting things settle for a while, mom, K and I watched the last four episodes of "Buffy The Vampire Slayer".  Thinking we will watch "Angel" next even though "Everwood" and "Joan of Arcadia" are up there as well (would have to buy the latter, have all released seasons of the former).  Then I came down to my room and am typing this up :)

So, guess I should give a breif 'health' update as I haven't posted for a while.  I saw my GP on monday and was relieved that the 'appointment' went more smoothly than I could have imagined!  My rheumy does all my pain medications and the ones I was on currently needed switching to the next one (we rotate my breathrough and long-acting pain meds when they start becoming ineffective so I don't build up a huge tolerance to them).  Well I didn't know if my GP would switch them or not but he did with no questions asked.  So I switched my breakthrough meds on monday and my long-acting ones on thursday and have been doing pretty good with them.

My knee hasn't seemed to be doing well lately for some reason.  I am back up to being swollen, unable to cross my legs on that side and having to prop it up in bed.  The entire lateral side of the leg is very sore and tender.  I really hope my rheumy gets back soon as I need some answers and / or something that can be done to relieve some of the pain!

What has been the worse however is the horribly painfull neuropathic pain in my right shoulder.  It feels like it is burning 24/7 and even wearing a baggy t-shirt is not comfortable.  I am on a medication for this that my rheumy has told me I can play around with so I have started taking it twice a day now instead of just once a day.  Hoping that it kicks in soon though as this is exrutiatingly painfull.  It has left me in tears most nights because there just isn't anything I can do to help it and just have to wait and see if the more frequent dose will help.

Major dislike - we were coming home from K's karate (he is already up to his advanced blue belt :D - just had to be the proud auntie for a minute there lol) last night and as there are a lot of large transport trucks around here and we get lots of snow, we have many potholes and very bumpy roads.  We got about 10 minutes away from the house and I got a headache, 5 minutes out it was nausea and when we got home it was the full headache, neck pain and stiffness, nausea, cold sweats and dizzyness.  I haven't had an 'attack' like this in a very long time.  Took a few gravol and ended up laying on the couch for the rest of the night.  When I got into bed and lying down properly I started experiencing vertigo if I rolled over on the bed.  No problems like that standing up, just when laying down.  Today I have been really off balance and have had to grab the shoppnig cart or whatever was around to stop from falling down.  Really hoping all that fun stuff isn't starting to come back!  I started taking a medication for it years ago and it has worked great ever since, haven't felt this affected by it in a very long time, thankfully though the duration of this 'attack' was a LOT shorter than the ones I used to get!

Well all that stuff being done today plus all the not feeling good means I will end it here as I am going to go crawl in my nice warm waterbed and hopefully get some sleep!

Recap of the week

It seems this week that it really is giving me one good experience with one bad experience to even it out.  Unfortunatly the bad are out weighing the good pretty heavily.  So here are the bad and good of the week:

Thursday (May 5th):
Bad - My internist believes that most of my problems right now are from me being depressed and didn't really have anything to tell us as to what to try to get rid of most of the problems.
Good - Was able to go shopping with mom and picked up a bunch of books to read.

Friday (May 6th):
Bad - Find out that the plans I had made for K for the next day were cancelled as my brother and his gf were coming out to see him (was told this at 11pm).
Good - Parents had a cheque come in regarding me and disability status that was back dated so got a nice chunk of change to put towards my loan which should leave it paid off within the next two years instead of 5.

Saturday (May 7th):
Bad - Brother and GF came out for a very short period of time which ended up messing up basically the entire day for K and myself.
Good - Made the best of it and hurried in to town with K to go and see 'Rio' (in 3D) and do some shopping.

Sunday (May 8th):
Bad - Not feeling good at all and stressing out about appointments.
Good - Actually got recognized for once on Mother's day with a card and gift from K.

Monday (May 9th):
Bad - Got in to a huge fight with mom about K's karate and my brothers involvement with K, hoping I actually got through to her about my absolutly not trusting brother and feeling unsafe and on edge when he is here.
Good - Found out K would be grading on friday for his Blue Advanced belt.

Tuesday (May 10th):
Bad - Horrible OS appt, major frustration and some very unhelpful comments from my dad
Good - Was able to go to karate with K and he got his third stripe, we then went out and each of us got some Webkinz to open up all the areas for all of us

Wednesday (May 11th):
Bad - Got a call from my Rheumy's office letting me know that they will be closed until further notice for some reason (unforseen circumstances, hopefully my rheumy is okay!!) Then had to take Shaggy to the vet, he had a major panic attack when the lady brought out the mussle so I aborted that task about getting his foot checked where his nail came out.  Plus a nice $165 bill.
Good - Got a letter from my ODSP worker letting me know that they will pay the entire $375 for me to get my ring splints (both little fingers and one thumb), I just have to get in touch with her to find out how I actually go about doing so.

Thursday (May 12th):
Bad - Had to get bloodwork done then got pretty sick
Good - They were able to get blood on the first stick and pretty easily (for me) then I was able to sleep it all off and start feeling better.

Friday (May 13th):
Bad - Some how got in to an arguement with my parents about K's birthday party when I asked what was going on and questioned a few small details then mom flipped out about 'how nothing they do can please me anymore'.  Really have no clue where that came from!
Good - K did great at grading and now has his Blue Advanced Belt!  This is his 10th belth since starting, only 5 more before starting the black belt process!

I will get around to posting about the appointment I had.  It still is really hard to think about and I am at such a loss with my medical health right now, more than I have ever been.  Internist think's its all down to depression, OS was no help or suggestions and no surgery will be done and my Rheumy is out of the picture for now (the office is closed until further notice)