Saturday, December 1, 2012

BIG Update - Part "Mom"

So after all the drama a few months ago with mom, the ordeal is finally over (for the most part).  On Friday morning she went in to surgery and we were all very happy to find out that the cyst was NOT attached to anything (they thought they would have to remove part of her bowel and resection it as they thought the cyst was attached to it) and they were able to do the hysterectomy at the same time which means no more surgery :) (Which I doubt mom would have gone through having a separate hysterectomy after the last two surgeries).  She is in a semi-private room right now in Big City and is pretty comfortable.  They took out the pain pump and she is just using T3's at this point which is good.  The back pain she had been getting is already different, still pain but not the same feeling as before. They have even got her up and walking a little (from the bed to the bathroom to the door and back). The doctor said it was pressing up against her central nervous system so having it removed should fix a lot of problems.  The doctor who did the hysterectomy said the cyst was the size and shape of a decent sized turkey!  They guess between 8 and 10 lbs!  Dad is still down there with her and will stay there until at least after talking to the doctor on rounds on Monday.  He will decide then, and talk to me and see how I'm doing here alone with K, about if he will come home or stay up there longer. 

BIG Update! - Part "Me"

Okay, once again it has taken me a long time to do an update and there is so much to update you all on so I will break it down into three posts - update on me, update on my mom and general update on situations going on.  So this is the first one and it will be about little ol' me :)

So a few weeks ago I suddenly got a major toothache along all the teeth in my left top jaw and my cheek was all swollen and so as my eye.  I went straight to the doctor and he barely even touched my cheek and said I had a massive sinus infection and didn't even check my ears or throat, just wrote up for an antibiotic.  I have had this one before and hated it but it left a terrible taste in my mouth.  This time around strangely the bad taste only lasted a few hours yet I had an actual appettite!  I was eating two full meals a day and as eating almost normal portion sizes.  It did cause some GI upset but once I started eating yogurt with it it settled down.  Going to definitly have to talk to my GI/internist/cardio about it next time I see her to see if this could help things in any way at all.

I had a planned doctor's appointment last week mainly to change over my pain meds.  He had no problem switching my long acting meds but was absolute in his refusal to change my breakthrough meds.  He says the one that I switch to is 'dirty' and that it's not used anymore and that he won't perscribe it.  I told him that he wrote for it last year and the fact that I had been on this med for like seven years.  He then said that there was no reason that I needed to change it because he was changing my long-acting.  I told him that I was getting tolerant and because of the switching medications I hadn't had to change my dosage in years.  He asked how many breakthrough I was taking and I told him that lately I had been taking at least one, a lot of the times two a day.  He dismissed this and told me that I could take it at least three to four times a day. I told him that my rheumy always told me that if I as relying on my breakthrough on a daily basis then it was time to either switch or increse my long-acting meds.  He told me that he would rather me take more of the breakthrough I am on instead of switching to the other breakthrough medication.  I still wasn't feeling all that well (even though I did get down-graded to just a cold and that the infection was gone) so I just basically gave up.  The next appointment should be interesting as this could become quite the battle. 

Mom was very mad that he told me to just take 3 or 4 breakthrough meds instead of switching over to the other medication as we have been working this system very successfully for 5+ years and my GP had been going along with the plan my old rheumy set up - until this appointment.  Still not sure what we are going to be doing as I am still needing at least one breakthrough dose a day, which for just changing my long-acting is more than I normally would be needing.

On another note - this cold is killing my joints!  My hands are very stiff (I think part of this is an auto-immune flare up that my doctor just doesn't want to put time into figuring it out) and my knees and all the other joints are really achey and (strange word but all I can think of) arthritisy.  I have also been having some strange 'changes' in my GI system that I have no clue what is going on.  But until it becomes a problem, we have more important things to deal with.

Thursday, November 15, 2012


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

Tuesday, October 23, 2012


1) Holding a baby is a strenuous activity
2) Someone is finally AWOL
3) Preparing for flu season
4) Finally getting somewhere with doctors
5) A light is dawning

The first one is obvious I should think.  I held my friends baby for about 30 minutes on Sunday afternoon with not much support for me and then again for a good 2 hours Sunday night and woke up with a shoulder and upper arm so sore you would have thought I had been in a prized fight.  I was even surprised when I didn't see bruises.  How can something so small (under 7lbs) cause any pain.  However, there is no way that I will ever not hold him because I am worried about pain the next day.  Just not going to happen!!

Second is actually welcomed news.  My mom finally admitted over Thanksgiving weekend that my brother has gone missing.  They have heard nothing since the early early hours on October 5th, he is not updating his facebook page and his cell phone has been disconnected.  Just what my mom needs during this time she is supposed to be using for healing in the run up to more surgery.  So we are back to the whole keeping doors locked and not answering any phone calls from unknown numbers.

My mom, K and myself all went over to the doctor's office yesterday to get our flu shots.  I know this can be a controversial topic but we choose to get ours.  Last year I didn't get one (as I was sick) and I was sick from mid-October through February.  I am not doing that again!!  It was easy getting K to get one this year, I just told him he couldn't see the baby if he didn't get his flu shot!  He got his shot then looked at me and said "That was it? It didn't hurt!".  We are still waiting on dad to get his but keep telling him with mom's upcoming hospital excursions, her need to heal and my crappy immune system he has to get one!

Fourth on the list is one that is pretty frustrating.  As you all know from my LONG post the other day about my mom, we have been in limbo for a while.  Dad decided on Monday that since it had been three weeks since the 'surgery' that he was going to call around and see what was going on.  He called mom's ob/gyn (Dr. P)'s office to see just what was going on and they hadn't heard anything but told him that they would make a few calls and find out what was going on.  They called back shortly and told dad that they were glad that dad called because when they called 'big city' they were told that mom's appointment was actually last week!!!!!  They had an appointment set up for her on October 18th that we never knew about and they never even questioned why someone in our situation wouldn't show up for an appointment.  Well dad was pissed!!!  I wouldn't have wanted to be on the other end of the phone.  So he called the general surgeons (Dr. B) office and just let go saying that they could be there in an hour and 15 minutes and that they would come at any time.  They told dad that Dr. B operates on every other Thursday and sees patients the other Thursday's (not sure what she does every other day of the week :S ) so they 'squeezed' mom in on November 1st at 8:45 in the morning!!  Which leads me to think that the doctor is coming in early to get mom's appointment.  Now remember, we live over an hour away so this makes it an insanely early time to get on the road for the appointment.  I honestly would suggest that mom and dad went up the night before and got a hotel but I don't think mom would go for that.  Now, here is the tricky part.  Thankfully mom was sound asleep through all of dad's phone calls and just woke up to find out that she has an appointment on November 1st.  Dad doesn't want to put anymore stress on her so we are not going to tell her about the 'missed' appointment.  Not sure how that will work out when she gets to the appointment so we will just see what happens.  Now this is only a consultation visit but we are hoping that we get a lot more information and dates from this.

Lastly, something I have been trying to avoid I think.  I am starting to realize just how messed up my GI system is getting.  I have all the 'normal' EDS and gastro lower GI issues (constipation, bloating, bleeding, cramping etc) but always just chalked that up to the pain medications that I am on and never thought anything of it.  A few weeks ago we found out that the stool softeners I have to take are not supposed to be taken within two hours of other medications!  I always took them with my normal night time medications.  So mom and I figured that maybe we should try stopping that to see if my night meds might just have been affected and messing with my sleep.  I went out and bought some Miralax and switched to that for a week.  I have never had the stomach cramps that I have had this week, and lots more issues with constipation so I will definitely be switching back to the pills as I haven't even noticed a difference with the other meds.  But at least I tried and saw what happened.  Now as to upper GI issues, I have noticed them getting a lot worse, especially after the scope I had last January.  I have finally got the real bad reflux under control with changing my actonel drug dosage thankfully but have lately been noticing other issues.  I have had a lot of problems with eating and having it feel like it is just sitting in my stomach.  I am not talking about feeling full a few hours after supper, I am talking not wanting to eat for a few days because I was still full from a meal I had a few days ago.  Also have found that I have to be careful when feeding the dogs and actually sit on the floor to feed them instead of bending and reaching down as if I do this (like touching your toes) the food literally comes back up and I have been quite close to throwing up.  I have to watch more which foods I eat as well as to figure out which cause me problems and stuff like that.  I have also been under a lot more stress with mom's problems but also quite run down as I have had to be more active this last month filling in for mom and stuff like that.  Once things settled down, this will be an issue that needs to be looked into for sure.

Tuesday, October 16, 2012

Unexpected Surprise and a Little Upset

Well I know this should have been about my mom and what is going on (and has gone on) but something else has come up that I wanted to blog about.  Because of all the moving I did with university and moving back home and honestly a lot because of EDS and the accompanying issues, I am down to one good friend in my hometown.  This friend "S" has been around a long time in my life.  Ironically our parents were acquaintances before we were even born!  They used to bowl on a league together but then lost touch with each other when my parents stopped bowling.  S and I became friends in grade 3 when I changed schools and we quickly learned our past history through out parents.  We were really close until about grade 8 and we grew apart.  We were in different levels at high school and in different circles of friends but were always friendly with each other, just didn't get together as often.  When I left to go to University we lost touch but when my nephew was born we got back in contact and kept in contact.  She was the only person I knew in my home town friend wise when I had to leave university part way through my second degree.  She had been there when I had some of my knee surgeries and always stopped by with Slushies and a movie. We grew apart a few years ago again mainly (knowing this now) as I fell into a deep depression and severed most ties with friends.  Anyways obviously we got back in contact, and she was married one year ago yesterday.  I was not in the wedding mainly because she knew I did not have the money to do it, didn't want to put a strain on our friendship (as we had both had friends that we stood up in for their weddings then the friendship would end) and honestly because my health couldn't take it.  We talked frequently on facebook and started spending more and more time together again as she had more problems with other friends.

Anyways, last year around the beginning of April she stopped by the house for a quick visit and we were talking about how my neighbours were pregnant (the girl who lives next door is one of S's good friends sister) and S gave a small smile and said "I'm about a month now" and rubbed her stomach.  Mom and I were so happy for her and then she said her mom would kill her because she wasn't supposed to be telling anyone about it as it was so early stages but that she knew I could keep the secret.  Since then she ended up losing her job and we fell into similar circumstances again.  Not having money to go out shopping all the time or movies every week so since this summer we have basically been getting together weekly and scrap booking or doing some occasional trip across the border for shopping.  She confined in me all her fears and worry's about being pregnant and not knowing what to do with a baby (she is pretty much the youngest in her entire family).  She was due to have her baby boy on Halloween.  She even talked to me about the name of the baby and told me that only family knew and they didn't want anyone else to know as they didn't want to 'jinx' it.

Last night I went facebook and was very surprised to see her brother post a picture of a gorgeous little baby and then confirmed that yes, S had her baby.  I went up to the hospital today around 2 and stayed there while they took him to get circumcised and tried feeding him (behind a curtain) and just be there.  I found out that her husband had dinner plans with his family and S's mom had plans to go on a day trip with family (remember she gave birth 3 weeks premature so plans had already been made) and that S would be alone from about 5:30 until the next morning!  I quickly offered to stay in with her and she looked relieved to have someone there with her.  I ran a few errands and got back to the hospital around 5:30 until 9ish when she was going to attempt another feed than get settled down for the night.  I found out that I was the only friend that had come up to the hospital to see her so I was the first non-family member (technically) to hold the little man.

I held her little boy most of the evening and even admitted to her that I had regrets.  If I had of known that I would end up disabled and my parents having custody of K, I would have stopped school when he was born so that I could be there to watch him grown up more.  Then I told her how I wasn't going to have kids and even said that I would love to be able to watch a little baby grow up as this would be my only chance.  I told her that if she needed absolutely anything to just call me and that this weekend when her husband has to work, I have no qualms about packing up an overnight bag to go in and stay with her.  Both her and her mom looked a little more relaxed when I said that.  I helped change a diaper, helped with the creams and gauze from the circumcising and just held and rocked him and she remarked that I knew what I was doing and she was going to need help and was glad that I knew what I was doing lol.

So all of that was really good news... the bad news?  I am in pure agony right now.  My entire right leg is in spasms and painful (even a pain killer isn't dulling it) and my right arm right from neck down to fingers is burning.  It really makes me mad that just going in and getting to know my best friends new little baby and holding him for a few hours has caused so much pain.  It is just so frustrating :(  Going to have to double up on the pain meds if I want any chance to sleep tonight :S

Monday, October 15, 2012

Worst Day Of My Life...

... and I am not being overly dramatic here!  I haven't posted yet about this as it was quite a few rough weeks around here medical wise - and it wasn't me!  I will start from the beginning and apologize in advance as this will most likely be long as it was a very very long day.

My mom has been having 'female problems' for quite a while now and after two D&C's within the last few years she wanted to finally get it all over with, by the way she does not have EDS. The doctor she usually saw classified her as a new patient so she was facing a six month wait before she could get in to see him again.  So the receptionist at our GP's office asked if she wanted her to try a different doctor and actually referred mom to her personal ob/gyn and mom was able to go in and see him mid-September.  Mom went to the appointment and Dr. P suggested a more 'sophisticated' D&C done in 'big-town' an hour away but mom instead asked if she couldn't just 'get it over with' and have a full hysterectomy.  Dr. P smiled and said that he hoped mom would ask for one.  Then he asked how soon mom wanted to get it done and she said any time so he went to check his calendar and had a date for her... October 1st - only two weeks away which she took and was glad to be getting it over with well before Christmas.  She was told that she would be in the hospital for 3 nights before being allowed to go home and would be on 'lifting restrictions' for 6 - 8 weeks.

So on September 30th, mom packed her bag for the week and I packed up all I needed for a day at the hospital.  When I have surgery it is generally mom that comes with me and when mom has surgery it's generally me going, dad hates the hospital so tries to avoid it at all costs and is really not good with sitting around and waiting.  October 1st we woke up really early and headed to the hospital.  We do the normal stuff and are taken to the same area I went when I had my scope (that bad horrible scope!!! uh-oh bad feeling #1) before she is taken up to the pre-op area and they let me go up with her.  I meet Dr. P at that time and was glad to see that her anesthesiologist was actually the one that I had a consult with before my last surgery who was really really nice!  I have no clue about any times for this day.  I know her surgery was supposed to be around 9:30ish and that she got to go back slightly early.  So I grabbed her stuff and my stuff and headed down to Tim Hortons to get a bagel and an iced cap as I hadn't eaten anything yet.  I then headed up to the waiting area for the in-patient surgery ward.  I had my breakfast and took out my book to read, knowing that I would be there for awhile before hearing anything.

I honestly don't remember what time it was but Dr. P entered the room and told me to sit down because we had to talk (uh-oh bad feeling #2).  He was very calm and collected and even though I knew it was serious, he put me instantly at ease just with his presence.  He told me that they did not do the surgery.  He said that he was glad that he was the one to do the surgery because when he does a hysterectomy he likes to look around the entire abdominal cavity whereas most ob/gyn's don't do this.  He tells me that they found what is called an abdominal aortic aneurysm and once he saw that he didn't want to proceed.  He told me that generally if an aneurysm is less than 5cm they aren't too concerned about it.  Then he tells me that my mom's is 12cm in size.  I went kind of numb at that point but he kept on saying that they were waiting for transport as they needed to take her to 'big city' urgently.  Dr. P says they are having slight difficulties with the paperwork as they have never had to send a patient from post-op straight to 'big city' by ambulance before (it is usually done out of ICU).  He also said something along the lines that there were no decisions that I had to make (thankfully!!  I was her emergency contact for the day because I was with her) and he was calling the shots.  He asked if I had any questions and all I said was I wanted to go and see her.  He told me that this was generally not allowed but he would talk to the nurse about it.  I quickly went on the Internet there to look up symptoms to see if there was anything that might be able to help.  I called my dad and told him what was going on and said that I would leave keep him up to date.  He told me that we would change places once she was off so I would be home with K and he would head to 'big city' with mom.

A nurse came to get me and told me that technically I was not allowed in the post-op area but that they were making an exception so mom could see me before she was shipped out (uh-oh bad feeling #3).  I get to the area and not only does mom still have her IV and catheter in but she is also now hooked up to oxygen, ekg, pulse ox and two or three additional IV's (one of which was designated for blood transfusions).  I remember a calm peaceful feel to the area as the nurses were all scrambling (uh-oh bad feeling #4) and at one point her pulse-ox fell off her toe and the machines started beeping but without even thinking I just put it back on her and the alarm stopped.  The one thing she asked of me was to call my aunt and NOT call my grandma at all!  

The ambulance was just arriving so I really didn't even get to talk to mom before hand (she was obviously quite groggy and confused).  I was not impressed with the ambulance man (AM) but the ambulance woman (AW) was really nice.  I asked immediately that I wanted to go with her in the ambulance and AM said 'no', AW then explained that they had to take a nurse with her so there would be no room for me.  At this point I am just searching my brain as to what to say / ask.  I told them that she had back pain for a long time that was termed as arthritis (learned this could be a symptom) and that made them even more put a bit more hurry in their step.  I then asked if they needed her medications - AM 'no', AW no we don't need them we have all that information on her forms and that 'big city' would handle her medications in hospital.  I asked if they wanted my dad's cell phone and explained that we were 'switching off' and once again AM says 'no' and AW tells me that they have me listed as a contact person and made sure that if I was called I could get any information to my dad (which I could) as they don't like having more than one phone number attached to each patient.  As they are strapping her all up, all I kept saying was that she was claustrophobic.  I needed to make sure that they knew that as I did not want mom having a panic attack in the ambulance on the way there.  AM didn't even acknowledge me where AW told me thank you for the information, made a mark on the clipboard and smiled at me.  I then asked where they were going and both AM, AW and a few other nurses all told me the same hospital (old children's hospital) so I knew where to send my dad.  They took her off and I was left with just a nurse and got out in to the hallway and was trying so hard to cry but when the nurse gave me a hug I broke down.  She just kept repeating what all the other doctor's and nurses I had seen had said - "This is a good thing!".  In my mind I knew it was but was still in shock about it all.  The nurse then told me that it was good as they could do non-emergent surgery and get it out before anything bad happened and that Dr. P did the right thing.  She walked me to the end of her unit, turned me around to look at me and asked if I was okay or did I want her to call me a cab.  I said I was fine and needed to get home so dad could leave.  She said to tell dad not to hurry (really?!?!?) as he might not even get to see her between tests until after surgery.

I called home and told dad that I was on my way home and that he could leave then (I had already told him where she was going and that he should pack an overnight bag for a few days just in case).  He said that he would wait until I got home and I was really mad about that.  I thought he should have left the minute I told him they were sending her to 'big city' but apparently he told mom that in his heart he had to see that I was okay before he left me here alone (K was at school).  We did a quick switch off and he tells me that he has called my nan already and a few other people that I was to keep informed as to what was going on. 

Then I sank on the couch.  From coming from such chaos and emotions and all of a sudden it was very overly quiet.  I knew that I should go lie down for an hour or so before K got home from school as I had told dad that he was to stay in 'big city' as long as mom was there and to not worry about me or K, that I had everything covered.  But that just wasn't an option with how fast my brain was running.  I called my Aunt (mom's side) and told her what I knew, what was going on and that I was basically leaving it up to her to relate the news to nan and my cousins, which she was fine with I might add.  I then called our neighbours (we have lived beside them for 23 years) and they said to keep them informed and that they were there day and night if I needed anything.  I will say though that I was disappointed with one person.  The only real friend I have around her, when I texted her and asked if she was free she said she was just heading out of town to go shopping with her mom and then asked if everything was okay and I said no.  I would have liked her to just cancel her trip but I know it wasn't that easy.  Then our good family friend (that came to talk to mom and I when the problems with my brother were going on from a few posts ago) was out of town on her honeymoon and I could only get her answering machine on her cell so had no option than to just leave a message (she felt horrible after!)  Anyways, I didn't want to be making a pile of phone calls so I decided that since most of dad's family was on facebook, I would just do updates on there. Ironically at that time it all worked out. My one set of aunt and uncle don't have facebook but their daughters do and the one was online at that time and called her parents.  My next set go on sporadically but her best friend was on so she called my aunt, same situation with my last set.  I felt horrible but I realized the next day that I did have another set of aunt and uncle not connected to facebook but found out another aunt had kept her up to date.

I ended up having one run in with a cousin (mom's side) when she posted on one of my facebook updates that 'someone' really needed to call my nan and let her know what was going on.  I was mad about that as my aunt on that side was the one person who I was telling everything to as soon as I heard anything.  I literally would hang up the phone with dad and call her.  I politely (I hope) basically said that since I was home alone with K I didn't want to be making endless phone calls and end up upsetting him.  I had told him when he got home that nanny had to have a different surgery by a new doctor in 'big city' but that was it.  I heard from dad late afternoon that they had taken her up for a CT scan and that they no longer thought it was an aneurysm but that they weren't sure what it was.  The vascular surgeon had been in and signed off on her so they were waiting for a new doctor to come and look her over.  At this point I was just all over the place so I just ordered pizza for supper.  When we got back the neighbour across the street was home so I went over to tell her what was going on and she said that she would leave her phone by her bed and for me to call her at anytime for anything.  Our other long-time neighbour echoed that.

I just went to start eating and I get a phone call from another family friend.  This family lived behind us for years and they watched my grow up and mom and dad watched their kids grow up.  They moved but dad is still good friends with them.  Ironically, she had been the OR nurse in the OR with mom which was strangely comforting that mom had someone there to hold her hand when she went under.  She wanted to know what was going on!  Apparently they originally thought it was a mass on her kidney so they called in a urologist but then she had to leave (not sure why) and when she got 'back' she found out they had sent mom to 'big city' with an aneurysm and had debated on calling or not.  I gave her the updates and she was relieved to hear it was not an aneurysm and that it was getting dealt with.  I told her I would keep her updated and call when I heard more and she had the nicest answer 'If you have time that's okay but don't worry about keeping my updated as I am sure you have your hands more than full talking to enough people'.  Someone understood.

Around 7ish I found out that it was a large cyst but they didn't know where it was attached but suspected the intestines and that they had met with the general surgeon and even though they needed to get it out, it wasn't an emergency and could be scheduled for another time.  He assured dad that it wouldn't be horribly long wait (we have dealt with 'big city' and surgery before).  At that point dad wasn't sure if they were sending mom home for the night, if they were staying there or what was going on so I assumed that he would be there over night and I was in charge of K for the night.  A few more calls and updates later and around 10 dad calls again saying they are shipping her home for the night so he is driving back, making sure she gets settled into her room and then will be home.  I figured since K was kinda out of sorts and I was exhausted I wasn't even going to bother trying to get him to sleep in his own bed (an ongoing battle) and just had us both curl up in mom's bed and tried to go to sleep.  But he knew dad was coming home, and I didn't want to sleep until dad got home, so we were up until 11:30ish that night.  I had set my alarm for the morning but dad got up with him and off to school. 

So that was Monday, October 1st, 2012.  It's a day I will never forget!  There is still more to tell but this is already novel length so I will post more tomorrow (or in a few days) about what has happened since.

Want to know the strangest thing?  As soon as Dr. P. said it was an abdominal aortic aneurysm my very first thought was...... "But she doesn't have EDS".

Sunday, August 19, 2012

"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!!

Thursday, August 9, 2012

Summer Recap

Since I was posting my summer vacation posts on the date that they actually happened, and have posted one up-to-date post I thought it would make it slightly easier to just list the posts that I back dated.  Most of these three posts were written up after I posted about my brother but I wanted to post them to the proper date.  The posts are:

Concert and weekend with S

Wonderland trip with K and my cousins

Week-long Vacation with Family

Unfortunately there will be more posts about what is going on with my brother.  Just wanted to make sure my summer fun posts were not lost in all this (like our real summer fun getting lost because of him).

Wednesday, August 1, 2012

WTF - Brother

So, as always, when things start to actually look positive and things seem to be going well, my brother has to go and fuck things up.  Always happens, and I am the only family member to actually realize it always will happen.  I know this is horrible to say, and 99.99999% of people could never even fathom it, but I would be quite happy if he just up and disappeared.  The only way I would be sad at his death is because my parents and K would be sad. 

After a great concert weekend with my friend, a trip to see family and take the kids to Wonderland, a local amusement park and time on the beach we come home to more new news.  First off, that evening mom came into my room and told me that K and his fiance had broken up and that she wanted to tell me to keep me up to date with what is going on (that is a first in my life!).  She told me that he has not been using but that he is going to go and give NA (Narcotics Anonymous) another go to get his life straightened around.  Apparently his fiance had cheated on him with one of his friends that lived with them and he had proof.  She also told me that the fiance and friend had been smoking a lot of pot.  I basically bit my tongue to prevent an "I told you so" and then got mad that they knew this was going on yet they still allowed my nephew to go over to the place.  Apparently it was never when the friend was around but still really bothered me.  This was on Tuesday.

On Friday K showed up at the house and apparently told my nephew that he had broken up with his fiance and that he was going away for a while to get his life back on track.  Nothing more was said.  My mom was having trouble with her facebook because K had used her computer to check out his facebook.  My parents went out for dinner that night and my nephew was at a dance so I figured I would go on and get my mom's facebook all set up the way it should be for her.  Well I looked around a bit and found a post from my brother stating that he was so messed up this time and couldn't believe how erratic he could get and that he was 5 days clean at the time.  That had been posted on the Wednesday so he apparently got clean on Friday (20th).  Once my parents got home and I got mom alone I flat out told her that either K was lying to them or that they were lying to me and told her about the post.  She claimed she knew and was going to talk to me about that and apologize.  Why apologize?  Well I had been telling her for months that K was on something.  His behaviour clearly showed that he was using something but no one had believed me.  My nephew even told me one night that his dad (K) chewed up his pills before swallowing them.  I told mom about this (my nephew told me this around the end of June) and she confronted K about this and he told him that it was just Tylenol and that he was trying to show my nephew how he could take pills easy (my nephew has issues with taking medications).  K told mom that he couldn't be on anything because his job did random drug testing.  I called him on that lie (he was off work at the time for once) but mom believed him.  I pointed out specific erratic behaviour and she said that yes, in hindsight it was easy to see.  I basically started to cry and said that I was getting sick and tired of being the 'bad person' and getting into fights because I was the only one who could see through K's lies but no one else would accept it.  I was told that it was okay and that he had gone off to a larger city (about an hour away) to check himself into detox and that he would be staying there for awhile to get things sorted out.

On Sunday I woke up because my dog was barking like crazy and no one was letting him out.  I got up and went upstairs to find the lovely sight of my brother, mom and nephew in my mom's room talking.  He stayed for a few hours or so and then left again.  Apparently he told mom he was back in town that day because he was starting back to work and the doctor had given him the go ahead to go back to work but because he had been off so long that he had to come back and go through training again (on a Sunday?  I don't buy this lie).  Mom and I exchanged quite a few words about it that day but nothing too momentous.

Then today. Mom, my nephew and I went in to town today to do my nephew's back to school shopping, go to see Ice Age 4 in 3D, do some other shopping and get some supper.  K became a topic of conversation so I took me chance and asked if anyone even knew where he was.  Apparently he went to the detox center an hour away but they wouldn't take him because he wasn't 'sick enough', he had no where to stay in our hometown so was going to stay in the larger town (where the detox was, about an hour away).  But he had been back in our town to go through re-training for his job and that he was having problems because he couldn't get welfare in bigger city. So many contradictory stories that no one else can see through.  Anyways, we had a good day out (dad was at a car show about 3.5 hours away) and we unloaded the car and brought everything inside.  I went down stairs to get my PJ's on and put my stuff away and came upstairs to find mom checking the voicemail messages.  This is basically what we heard:

"Hi Dad, it's K. Umm, I am in the ICU in [hometown] (laugh), umm I did a bad testosterone shot in my leg and they diagnosed it as a flesh eating virus. Umm, [fiancee] is my emergency contact but I can't find her so can you find her let her know what's going on.  Oh, I can't get welfare in [big city] so I don't know what's going on. Oh, also I am calling you because my truck is parked out in front of emerge and I need someone to go get it." (First Message)

"Hi Dad, it's me again. Umm I can't get in touch with [fiance], she's listed as my emergency contact and you guys are second.  Could you drive over to her place and tell her that K's got a flesh eating virus and doesn't know if he is going to live or not?  They are going to take me to the OR within the hour.  Can you call [fiance] at [phone number].  Tell her that I love her and if I survive this or not I still love her.  I love you guys too.  And [my nephew] and [me].  Man I never saw this coming." (Second Message)

So of course with dad not home, it's just mom by herself to figure this all out.  She goes and finds the number to the hospital and calls ICU.  Apparently he did a steroid injection in his leg and got a flesh eating virus in it (I assume it was a dirty needle, he already has Hep-C from this).  They took him into surgery and removed all of the affected area that they could see.  He is in the ICU hooked up to a ventilator and sedated and they will do another operation tomorrow to see if they missed any areas.  Then mom had to call the police to let them know about the truck as she couldn't go and get it until my dad got home.  She tried a few times to get in touch with the ex-fiancee but all she kept getting was the answering machine for the guy who she slept with when she cheated on him and didn't leave a message.  Dad got home and they went back in to town to get his truck and that is where we are now.  He always manages to get himself into trouble but no one wants to admit that it is his own fault because of the many bad decisions he has made throughout his life.  It is all because of him and only him.

This is where I get upset.  When I went downstairs to talk to mom right after she got off the phone with the ICU nurse (she also changed his emergency contact information to be them and not the fiancee) she said she didn't know what was going to happen.  He has no where to go in the big city and can't get welfare and he has no where to stay here when he gets out.  He is her son and she can't just see him released out of the hospital and on to the streets.  I just told her to remember who the number one priority was (my nephew obviously) before she makes any decisions.  I honestly do not know what I would do if he comes and moves in here for a while.  I literally get physically sick being around him and could not tolerate him staying here.  His few hours a week visiting my nephew is bad enough!  Well I guess I should get to bed as it will be a long day tomorrow.

Wednesday, July 25, 2012

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.

Thursday, July 19, 2012

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.

Monday, July 16, 2012

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
[[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!!

Friday, June 29, 2012

GP Visit & Medication Frustration

This appointment went pretty well but was mostly unproductive which was annoying.  When I had seen Dr. B before I had my dental work he seemed like there was a lot of things he wanted to go over and make some changes.  As it turned out my mom had her own doctors appointment that morning (funny enough it was in the same building) so she could not go to the appointment with me. 

After a wait I get called in to the nurses office for the pre-appointment.  She weighs me (down a few pounds :D) and goes to get my blood pressure and surprised herself that she got it on the first try. She remarked that either she is getting better at hearing it or I am becoming normal.  I told her it must be her!  She gives me my depo shot and then asks what I am there for so she can make up her list.

I get in to Dr. B's office and he asks how the surgery went (fine) and how things were (also fine).  He then looks up my bloodwork results and notes that my kidney's are perfectly fine and that my  Vitamin D is still really really low but it is at least slowly getting better so that's all we can hope for.  He told me to get out in the sun at least 20 minutes a day, even if I am in the shade it still counts.  He then closes up his screen and starts making it look like the appointment is done!  I then quickly get him back on track and remind him what he had wanted to do.  He asked how my pain meds were doing and I said that they were still working but I was probably going to go through my breakthrough meds faster than normal because of the surgery, vacations and traveling.  He asked how often I was using them and then confirmed my daily dose meds and then asked when I was due to switch them which will probably be in the fall.  We basically both agreed that this is not the time to be changing meds around since I am 'stable' (seems to be a common word lately with doctors and me) and most importantly because I am going to be traveling.  He wants to make sure that I will be home for a good few weeks when he changes the meds around just so that if there are any problems I am right here at home and he is right here to help out if anything happens.  This is actually perfect as it shows he is taking things seriously and understanding that I have more 'special needs' than most of his other patients.  I did get the name of the medication this time and will be doing my own research before going back to see him.  He also needed some time to figure out how to work out what dosage I would need to start at, even said he might just phone the drug rep and get them to work it out for him.

We then discuss changing my osteoporosis meds from once a month to once a week.  He said that they did not have anywhere near the restrictions food and time wise as the monthly ones which would be a very welcome change!  To those who don't know, to take my pill I had to take it as soon as I woke up with a full glass of water, then I could not eat, drink, take other medications or lie down for around 30-60 minutes.  This made things very difficult with my sleep schedule and the fact that I generally take my morning meds as soon as I wake up.  It also had the very annoying side effect of bad heartburn (like I needed more) and a very 'achey' feeling that night or the next.  Getting rid of all that just seemed perfect so he made me up a new prescription for it.  I then asked him about a new DEXA scan and he checked when I had mine last (would be 2 years in September) but then said it wouldn't be covered as they can only do it every two years as a very minimum and did not like approving it so early, ideally they like to wait 3 - 5 years.  He also told me that any changes with starting medication don't show up for a few years but that we would submit for a new scan in the fall (so we have gone two years) and see what happens.  I had wondered about getting one to just confirm that the medication is helping but he reminded me that the medication I am on is the best one for me to be on.

At that everything was done so he told me to enjoy my summer and he would see me in the fall.  I told him that I was having an MRI on the 9th so probably would be back to him sooner to get the results and he laughed and said he needed to set one up for his back too and was glad I had reminded him.  So I walked out with a new prescription for an alternate osteoporosis medication, knowing the name of the new medication we are going to try in the fall and knowing that he knew I might have to refill my breakthrough meds early this summer because of all that is going on (and all the fun and enjoyment that is going on, I think he was just as happy to hear that honestly).

So, I normally took my monthly pill on the 27th as that is the easiest date for me to remember (I think I have wrote of the eerie 27 connection my family has before) and my appointment just happened to be on the 27th.  I had no monthly pills left and figured I would just start my weekly ones that day.  As it turned out I didn't get the actual pills until Thursday night.  A temporary pharmacist was working when I went to get them and just told me that I was to take the pills with food and that I could start them at any time.  I got home and had pull the box out of the bag and on the pharmacy's label it says to take with food.  Yet on the package it says to take it first thing in the morning with a glass of water and no food, drink, medications or laying down for 30-60 minutes!!  I was not impressed to say the least!  I did not take the pill and decided that I would call the pharmacist the next day and figure this out (the pharmacy was closed at this point).  I called the next day and again got a temporary fill in who told me that yes those were the directions, he did not know why they said to take with food on the label, that this prescription overwrote my monthly prescription and that since they had already billed my insurance I would just have to use these ones for the next three months and could change after that.  Or I could pay out of pocket for the monthly one if my GP called in a script for it!!!  It is an understatement that I was not impressed!!  He then suggested calling the next day when the normal pharmacist was in.

I decided that since mom was going out to do some grocery shopping that I would just go with her and go to the pharmacy in person instead of calling.  I got talking to the pharmacist and she said she had no clue how someone could put a label on the med saying take with food when it clearly is not allowed.  She goes to tell me that the only thing different with the weekly medication was that I didn't necessarily have to take it as soon as I got up.  There is basically a three hour window of not eating when you can take it.  I can take it if I haven' t had anything to eat for two hours and won't be eating for another 30-60 minutes.  She also wasn't impressed that the temp guy said I was basically stuck with it for three months because they actually have a 7 day window in which they can reverse any billing (mom and I still wonder though how they billed for the medication a day before I even picked up the medication???).  I told her that if the pharmacist had of told me that I still had to follow the strict food rules that I would have never have taken the medication.  I also figure that since he told me to take it with food, he was giving wrong information that lead to me accepting to take the medication and for me to take over the pills which would not have happened if he had told the truth.  Thankfully my pharmacist knows me and the medications were blister packed.  She suggested that with my history (gastroparesis and absorption issues) the weekly pill would be better for me and I would probably absorb more.  I told her it was the side effects that concerned me because if I am going to get the side effects every week, then there is no reason why it should have been switched.  We came to an agreement that she took back two months of the supply and only gave me one month.  I am to try it for a month and see if I get the side effects and if I do then we can switch back to the monthly ones.  It was all just such a mess and I am very upset at the temp pharmacist.  I think I will only go in for my medications at times I know that my pharmacist (the two permanent ones) are there to deal with.  I will also be contacting my doctors office and letting him know that there is no difference in the directions between the monthly and weekly forms of the medication.