Just a quick post as it is starting to become a bad pain night and I think I am going to curl up in bed pretty soon and just read my book for a while. I know it has been a while since I have posted (yet again) but you all understand why posts can come few and far between at times and other times I could post multiple times a day. For today though, I thought I would post about the really weird birthday 'theme' in our family. In case you didn't know today was not only my birthday but also my nephew's birthday. We were born on the same day exactly 20 years apart, but that is not the strange thing about our birthdays. The somewhat creepy and cool fact is this:
My grandma on my dad's side was born on August 27th and gave birth to her first born child exactly 8 months later on April 27th. My dad then had his first born child (my brother is adopted) 8 months later on December 27th. Exactly 1 year later and my nephew, the first of that generation, was born. So to summerize:
Nan - August 27th
Dad - April 27th
Me - December 27th
Nephew - December 27th
Not only do we happen to like the 27th of the month, the very strange fact to add to this is that I was born at 29 weeks (3 months premature) at 11:46 pm. Another 14 minutes and I would have been a day later. I was actually supposed to be born on March 17th in case you are interested. Then, my nephew, was actually about one week overdue! So add in we have 4 generations on the 27th, and two of those were not supposed to be on the 27ths at all.
Funny thing is that my dog was born on July 29th but the vet has his birthday marked down as July 27th even though I point it out that it is wrong every time that we are there! Another strange birthday fact in our family is that both of our dogs were born on the 29th. My dog is July 29th, our other dog is June 29th. My mom and my brother's step daughter also have the same birthday, my cousin and her nephew share a birthday and I have an aunt and uncle that also share a birthday.
We had a good day. Mom and I went to pick up the dogs from the 'pet resort' that we take them to when we go out of town then we came back home and I decided that I would rather a few more hours of sleep in my nice waterbed (did not sleep well the last few days as I was sharing a futon with my nephew and lots of stress going on) instead of going into town and doing some boxing week shopping. I got up then and gave K his birthday present from me which he loved. I got him a few halo lego sets and he thinks he is getting away with something lol. I keep telling him that he is allowed to play with the lego but dont even think about asking to play the video game. He gave me his gift to me which was a little zebra plush stuffed animal and some chocolate coins that he picked out all on his own because he knows I like zebras. We built and played with one of his new sets (bought him two) for a while before we had to get dressed. Got dressed and still had to wait like another hour and a half until my brother and family decided to show up. Had our traditional birthday meal of chinese food and then had our dessert. Because of us sharing a birthday it doesnt make sense to buy two cakes and since I have always loved ice cream cakes, we now get K a birthday cake (cupcakes actually this year - half vanilla and half chocolate) and I get an ice cream cake (Supposed to be half cookie dough blizzard and half reese's peanut butter cup but it ended up being just the top layer of cookie dough and reese's mixed together). Kyler then opened his gifts (a bunch of Lego kingdom sets from my parents, movie and money from my nan, money from my aunt and money from his dad) and I opened my cards (money from my parents and from my nan). J (step-niece?) wanted to sleep over so for some unknown reason mom agreed to it (not impressed!) and later (when my brother decided to finally drop off her PJ's) we all started watching "Kung Fu Panda 2" and J fell asleep soon after. And basically that brings us up to this point in time with me writing up this entry.
Okay, that was enough for tonight, my shoulder is starting to cause me a lot of problems and does not like being on the computer too much anymore which really sucks as I live on the computer! I do have some other posts that I need to get up soon. One of them I wasn't going to post as it was a doctor's appointment that went so horribly wrong that it was actually funny, so I figure you guys might like the laugh (and want to document it for my 'records' as well). Then there is a post about a 'doctor' that believes my cousin (well my cousin's son) has EDS and one about how my body, and family, is not liking a lot of scents and fragrences anymore. Those will come within the next few days hopefully!
I hope everyone had a great holiday season and all the best for the coming new year!!!
Tuesday, December 27, 2011
Monday, December 5, 2011
Cardiologist / Internist / Gastroenterologist (?) Appointment Outcome
Hmm I thought I had already posted about this appointment but for some reason it didn't go up. So here it goes again (shorter version as I had to remember it all to type it up!) Well I headed back in to see Dr. C. to go over the barium swallow study and ask a few questions. Long story short -
- She says I have a 'lazy stomach' aka delayed gastric emptying aka gastroparesis. Basically food is sitting too long in my stomach and not passing through my system for way too long (this is probably also why it took a week for the barium from the study to pass through!). The barium study showed food particles left in my stomach and by taking that fact, the constipation issues, the severe heartburn, the very often nausea and the fact that I have absolutly no desire for food and can only eat items in very small quantities (like if I eat 1/4 of a hamburger at noon I am full for the day and don't feel any hunger except for slightly at bedtime which passes with very minimal food intake).
She doesnt seem to think that I need to have an endoscopy (based on the swallowing issues alone) but agrees that it is best to do one. She is also going to use a balloon to try and open up the esophagus to see if that will help with the swallowing problems. Going over the sheet that needs to be filled out, she wrote a pile of notes on it! Everything from "Get a good nurse - hard IV access", to "No beta blockers - keep check on pulse and bp" and finally "NO Xylocaine". There was a minute there that she was trying to argue giving me the local anesthetic anyways to help relax the gag reflux but finally relented when I told her about my history with locals. She seemed surprised when I asked about taking a beta blocker before hand and asked who told me that I shouldn't and then I had to remind her that she told me to stop them before surgery because the fasting messes up the autonomic issues and my bp bottomed out last surgery. Not only am I to not eat anything after midnight the night before but she also wants only liquids (salty liquids at that) the entire day before so she can hopefully get my stomach actually empty to do this test. She mentioned that she is a little concerned with the fragility of my body tissue especially as she wants to do a balloon to check for any strictures (I think that is what she said).
And finally, I convinced her to change my beta blocker medication but keep the same equivilant dose. It was a tough fight but I finally got her to acknowledge that I knew my body better than her and that I was coming up to tolerance with the one I was on and wanted to switch to a new one before I became tolerant to it so that dosage increases don't have to occur. She was firm that switching the medications wouldn't do anything but mom and I both told her that in the past it does. It's not necessarily the active ingredient but something makes them work better when they are rotated out (like all my other medications). On the autoimmune front she wants the tests re-done and seemed to just dismiss all the autoimmune issues I have been having and told me that I need to find a new rheumatologist (well duh!!!!).
But I got my meds switched, the endoscope ordered (not til january though, don't want to have it done around Christmas as there is so much traveling and I have enough eating problems to deal with as it is) and I got yet another pretty title to add to my evergrowing list of disorders. This is a very common issues in EDSers though so it's not a shocker at all. What sucks though is that she didn't give any suggestions at all at what I can do to help those issues. How can I get more food in when I don't want to eat (if I try to force myself I reach a limit where if I take another bite I literally throw up), how can I swallow food, is there something that can help with the digestive issues, is there possibilities that there are actually food allergies that are making this issue worse? All questions with no answers. Seems thats all I get anymore - Just more questions with no answers in sight.
My mom is slightly happy though that there is finally something we can tell to peolpe when I go for a meal and can literally only eat two bites. She looked it up and was surprised at just how many of the issues I actually was having (she used to question the 'severe' part of the relux that doctor's always tack on). It shows why I don't want to eat, why I CAN'T eat and more. And of course it is just my luck that the ONLY symptom I don't have is weight loss :( That's one side effect I wish I had (especially after the appointment I had today!!! But more on that later!)
- She says I have a 'lazy stomach' aka delayed gastric emptying aka gastroparesis. Basically food is sitting too long in my stomach and not passing through my system for way too long (this is probably also why it took a week for the barium from the study to pass through!). The barium study showed food particles left in my stomach and by taking that fact, the constipation issues, the severe heartburn, the very often nausea and the fact that I have absolutly no desire for food and can only eat items in very small quantities (like if I eat 1/4 of a hamburger at noon I am full for the day and don't feel any hunger except for slightly at bedtime which passes with very minimal food intake).
She doesnt seem to think that I need to have an endoscopy (based on the swallowing issues alone) but agrees that it is best to do one. She is also going to use a balloon to try and open up the esophagus to see if that will help with the swallowing problems. Going over the sheet that needs to be filled out, she wrote a pile of notes on it! Everything from "Get a good nurse - hard IV access", to "No beta blockers - keep check on pulse and bp" and finally "NO Xylocaine". There was a minute there that she was trying to argue giving me the local anesthetic anyways to help relax the gag reflux but finally relented when I told her about my history with locals. She seemed surprised when I asked about taking a beta blocker before hand and asked who told me that I shouldn't and then I had to remind her that she told me to stop them before surgery because the fasting messes up the autonomic issues and my bp bottomed out last surgery. Not only am I to not eat anything after midnight the night before but she also wants only liquids (salty liquids at that) the entire day before so she can hopefully get my stomach actually empty to do this test. She mentioned that she is a little concerned with the fragility of my body tissue especially as she wants to do a balloon to check for any strictures (I think that is what she said).
And finally, I convinced her to change my beta blocker medication but keep the same equivilant dose. It was a tough fight but I finally got her to acknowledge that I knew my body better than her and that I was coming up to tolerance with the one I was on and wanted to switch to a new one before I became tolerant to it so that dosage increases don't have to occur. She was firm that switching the medications wouldn't do anything but mom and I both told her that in the past it does. It's not necessarily the active ingredient but something makes them work better when they are rotated out (like all my other medications). On the autoimmune front she wants the tests re-done and seemed to just dismiss all the autoimmune issues I have been having and told me that I need to find a new rheumatologist (well duh!!!!).
But I got my meds switched, the endoscope ordered (not til january though, don't want to have it done around Christmas as there is so much traveling and I have enough eating problems to deal with as it is) and I got yet another pretty title to add to my evergrowing list of disorders. This is a very common issues in EDSers though so it's not a shocker at all. What sucks though is that she didn't give any suggestions at all at what I can do to help those issues. How can I get more food in when I don't want to eat (if I try to force myself I reach a limit where if I take another bite I literally throw up), how can I swallow food, is there something that can help with the digestive issues, is there possibilities that there are actually food allergies that are making this issue worse? All questions with no answers. Seems thats all I get anymore - Just more questions with no answers in sight.
My mom is slightly happy though that there is finally something we can tell to peolpe when I go for a meal and can literally only eat two bites. She looked it up and was surprised at just how many of the issues I actually was having (she used to question the 'severe' part of the relux that doctor's always tack on). It shows why I don't want to eat, why I CAN'T eat and more. And of course it is just my luck that the ONLY symptom I don't have is weight loss :( That's one side effect I wish I had (especially after the appointment I had today!!! But more on that later!)
Tuesday, November 29, 2011
Month of Madness!
I have had the busiest month of my life this month! Since the beginning of november I have (starting at the beginning):
- Friday (11th) - Travelled from home 2.5 hours to my aunts (C)
- Saturday (12th) - Another hour to my other aunt's (P) house and did an entire day of shopping, back to P's house for food and a movie and then back to the C's house that night (an hour drive)
- Sunday (13th) - More shopping around town (Jysk, Picards, TSC and more) to get more Christmas gifts and then watching a Vampire Diaries marathon with C
- Monday (14th) - Did not leave the house but went over all my purchases so far and figured out what else I needed to get. Went through flyers and made lists of where I needed to go
- Tuesdsay (15th) - More shopping! Ended up at Chapters, Walmart, an Outlet Mall (Lego outlet), A normal Mall (Zelllers, Shoppers, Bath & Body Works and a few small kiosks)
- Wednesday (16th) - C had the day off of work so we went out of town and headed to Costco, the Lindt Outlet and a nice old fashioned family type of toy store
- Thursday (17th) - Headed over to my friends place (about an hour away) for the afternoon and evening getting to meet her new son and see her adorable daughter. Stayed for supper and a while longer before heading back to C's
- Friday (18th) - Took a family friend out to look at and purchase a new laptop and all the fixins :) Found her a good deal (got one last Christmas gift in as well), took her home and set it all up for her so it was ready and working for her to play with the next day (it was late by the time I left)
- Saturday (19th) - Was going to have a lazy day but my dad called around noon and told me that he decided to go home that day instead of the next day and that they would be at the house in about 20 minutes and wanted me all packed up and ready to go! Drove the 2.5 hours home, unpacked everything, showed mom all that I had got and took a nap as I was exhausted. Got an early night as I knew the next day would be 'tricky'
- Sunday (20th) - Mom woke me up becuase there was a lot of activity going on at our neighbour's house directly across the street from us. For 2+ hours we watched police, ambulances, first respone teams, coroners and finally the funeral home go in and out of the house. The man across the street had a heart attack and died and the wife found him when she and her sister got home. Dad made sure to head straight over and just walk by all the cops so that he could go in and be with J (we know them pretty well as dad has helped their son out in many ways and they did raise their grandkids for a few years so many conversations had been had, plus that is just the type of man my dad is). The death was sad but not totally unexpected and J will most likely be under a lot LESS stress now that he is gone (and dad has made sure that she calls him for anything that she may need help with or invited her over to watch TV at night if she is lonely, or whatever we can do). After all that my brother, his gf and her daughter (J) came out for a joint bday party for J and my mom. The GF however had perfume on (apparently she had put perfume on before going to 'work' the night before and had worn the same shirt) so that caused a LOT of problems as I do not tolerate scents at all anymore (strangely cologne and perfume are big no-no's but body sprays are okay - I am thinking it's the alcohol) and I had a very rough time with it and wasn't even sure if I would be able to have supper (she had to change, couldn't come near me, had to rearrange the supper table etc). Managed to stick it out (albeit not happily as they have been told repeatidly about this issue - maybe they will finally listen now) but just about lost it when my brother tried to give K moral adivce. I just got up and left and stayed in my room until they left as I was so mad!
- Monday (21st) - Volunteered at K's school with the book fair from 9 - 1, came home and crashed for a few hours then back at the school at 3:30 until 6ish.
- Tuesday (22nd) - Volunteered at K's school with the book fair from 9 - 1, came home and crashed for a few hours then back at the school at 3 until 6:30
- Wednesday (23rd) - Took a day 'off' trying to recover and gain some strength for the upcoming weekend
- Thursday (24th) - Had to organize stuff to go away for the weekend. Took K to karate and then we stopped to do a bit of shopping on the way home so we could pick up a card and small gift (chocolates) for my parents anniversary (44 years) the next day. Then had to gather up all the dog's stuff so mom and I could take them out to the kennel first thing friday morning
- Friday (25th) - Had to wake up early so we could have the dogs at the kennel for 9am, drove back home, packed up my stuff for the weekend and then headed into town (20 minute drive) to go to my doctor's appointment (see next post). Came back home, loaded up the van and we were off for the 2.5 hour trip back to C's house. Had a lovely arguement with my father in the car and was almost in tears from it but that's another story. Got there and C and her husband ordered in chinese for my parents anniversary then settled in and watched some TV and rested
- Saturday (26th) - Got up and showered and then headed from C's house the hour long drive to P's house for dad's side of the family's Christmas get together. Did presents (kids only), supper and got to talk to a cousin I rarely see but was really close to when we were kids then loaded back up into the car and back the hour long drive to C's house. Watched some TV then got to bed early for the next day
- Sunday (27th) - Got up real early, packed up the truck and headed back home (2.5hours) got home and I crawled into bed to have a nap. Got up around 1 and got ready and out the door for my dad's employer's childrens christmas party. Had a great time, lots of food, lots of kids activities and got to talk to people I hadn't seen in a while. Left there around 4:30 and stopped at the Bulk Store to pick up a few items and back home (again about a 20 minute drive). On the way home I started to feel really sick and by the time we got home I was very very close to throwing up. Quickly got in my PJ's and crawled into bed. Mom gave me two gravol, got me a drink and set up a bucket beside my bed. Pretty muched stayed there all night
- Monday (28th) - Woke up still feeling really sick so stayed in bed most of the day. Had to get my mom to go to my doctor's to get a medication refill for me as I was too sick to leave the house. Started feeling better late afternoon and moved to the couch where I stayed for the evening before heading back to bed
Thursday, October 20, 2011
Great couple of days!
I haven't mentioned on here, but most people that I know, know that I am a HUGE Michael Jackson fan. Have been since I was really little (mom tells me that I would go around singing 'Beat It' before I could even talk in full sentances). His death was a huge blow to me as I always dreamed of seeing him in concert. I even was very close to buying tickets to the "This Is It" tour even though it would have cost a small fortune to travel from where I am (Canada) to even just get to the UK to get in the right country. I was devestated when I learned of his death and have been following the news daily about the trial and what has happened.
Last year I had heard of the Cirque du Soleil show doing a Michael Jackson tribute show. I saw a story on TMZ later about the dates being released and found out that they were listing dates so I went to the official site and was very very shocked that the show would be coming to a large-ish city only an hour away from where I live (I thought I would have to travel hours away to a major city in the States to see it). I then somehow stumbled upon a pre-sale for tickets and managed to get to a site where I could buy tickets right then even though they didn't go on sale for another week. I went through and put in two seats and came up with amazing seats. I very quickly went upstairs to ask mom if she wanted to go and then broke it to her gently that it would be just under $400 for the two seats. I also let her know that even if she didn't want to go to the show, I would be going no matter what. Mom definitly wanted to go but wasn't too sure with the price. Dad came in at that time and said basically if she wanted to go and she said yes, dad then told me to go order the tickets and he would put $200 towards the tickets for our Christmas gift. I then told mom that I would pay the extra $100 for her ticket as her birthday and Christmas gifts so that she wouldn't have to pay anything for them. I went down, ordered our tickets and was so very happy!! For Christmas that year dad also booked us a hotel room so we could go down and enjoy the show without having to worry about driving the hour home at night.
Fast forward a year and the time of the concert has come!! I was so excited. I had been fighting a cold for a few weeks so I did absolutly nothing the week before the show so I wouldnt get sick. Mom volunteers at the school so we left when she got home around 10:30. We had decided to do some shopping so went to this little strip mall that had lots of stores. We went to JYSK, Home Sense, Winners, Toys R Us and a few more stores. I was able to get a small Christmas gift for Kyler but will admit that the majority of what I bought was for myself lol. We headed back to the hotel to check in and get a bit of a rest before going to the show. The doors opened at 7 so we decided to call a cab to get to the show and got there shortly before the doors opened. Then they opened and we were let in!
First thing I saw was a man that was selling programs ($25) and lanyards ($15) and of course I bought both of them. Mom eventually did decide to buy a program for herself as well. We kept on heading to the gate for our seats and came across the souveneir booth. They had lots of different items and it was a tough decision on what to get. Eventually I bought a t-shirt ($40), keychain ($15), poster ($10) and got a free canvas bag as well. Mom and I bought a bottle of pop each and headed to our seats. We had AMAZING seats!! 13 rows up and directly across from the b-stage. The show was just an amazingly great show! I was completely enthralled the entire time. I even was very very close to tears at three different points in the show. Im not going to go into that many details about what happened here, hoping to remember and be able to write a full recap of it at a later time. After the show I was able to hail a cab (first time for everything!) and it took us back to our hotel. We were both quite awake at the point so looked through our programs and watched a bit of TV before heading to bed.
We had planned on some more shopping for the next day but after we went to the first mall and got some breakfast (Cinnabon is so good and their Oreo drink is amazing!) and hit up two different bath product type stores we decided there wasn't much else in the mall so headed to the next side of town. After hitting the second mall we realized there wasn't much else we were looking for so we left that mall. We went to a few more smaller boutique type of stores before spending a great deal of time at Chapters (large bookstore) before heading back for home. We got home around supper and just ordered in some take-out food, got everything unpacked, I had to help K with his homework then watched our evening TV before getting to bed.
It was a great few days and I just loved the show! The live CD of it is coming out next month and I really hope that this means a DVD will be done of the show as well as I would love to be able to relive it over and over again!
Last year I had heard of the Cirque du Soleil show doing a Michael Jackson tribute show. I saw a story on TMZ later about the dates being released and found out that they were listing dates so I went to the official site and was very very shocked that the show would be coming to a large-ish city only an hour away from where I live (I thought I would have to travel hours away to a major city in the States to see it). I then somehow stumbled upon a pre-sale for tickets and managed to get to a site where I could buy tickets right then even though they didn't go on sale for another week. I went through and put in two seats and came up with amazing seats. I very quickly went upstairs to ask mom if she wanted to go and then broke it to her gently that it would be just under $400 for the two seats. I also let her know that even if she didn't want to go to the show, I would be going no matter what. Mom definitly wanted to go but wasn't too sure with the price. Dad came in at that time and said basically if she wanted to go and she said yes, dad then told me to go order the tickets and he would put $200 towards the tickets for our Christmas gift. I then told mom that I would pay the extra $100 for her ticket as her birthday and Christmas gifts so that she wouldn't have to pay anything for them. I went down, ordered our tickets and was so very happy!! For Christmas that year dad also booked us a hotel room so we could go down and enjoy the show without having to worry about driving the hour home at night.
Fast forward a year and the time of the concert has come!! I was so excited. I had been fighting a cold for a few weeks so I did absolutly nothing the week before the show so I wouldnt get sick. Mom volunteers at the school so we left when she got home around 10:30. We had decided to do some shopping so went to this little strip mall that had lots of stores. We went to JYSK, Home Sense, Winners, Toys R Us and a few more stores. I was able to get a small Christmas gift for Kyler but will admit that the majority of what I bought was for myself lol. We headed back to the hotel to check in and get a bit of a rest before going to the show. The doors opened at 7 so we decided to call a cab to get to the show and got there shortly before the doors opened. Then they opened and we were let in!
First thing I saw was a man that was selling programs ($25) and lanyards ($15) and of course I bought both of them. Mom eventually did decide to buy a program for herself as well. We kept on heading to the gate for our seats and came across the souveneir booth. They had lots of different items and it was a tough decision on what to get. Eventually I bought a t-shirt ($40), keychain ($15), poster ($10) and got a free canvas bag as well. Mom and I bought a bottle of pop each and headed to our seats. We had AMAZING seats!! 13 rows up and directly across from the b-stage. The show was just an amazingly great show! I was completely enthralled the entire time. I even was very very close to tears at three different points in the show. Im not going to go into that many details about what happened here, hoping to remember and be able to write a full recap of it at a later time. After the show I was able to hail a cab (first time for everything!) and it took us back to our hotel. We were both quite awake at the point so looked through our programs and watched a bit of TV before heading to bed.
We had planned on some more shopping for the next day but after we went to the first mall and got some breakfast (Cinnabon is so good and their Oreo drink is amazing!) and hit up two different bath product type stores we decided there wasn't much else in the mall so headed to the next side of town. After hitting the second mall we realized there wasn't much else we were looking for so we left that mall. We went to a few more smaller boutique type of stores before spending a great deal of time at Chapters (large bookstore) before heading back for home. We got home around supper and just ordered in some take-out food, got everything unpacked, I had to help K with his homework then watched our evening TV before getting to bed.
It was a great few days and I just loved the show! The live CD of it is coming out next month and I really hope that this means a DVD will be done of the show as well as I would love to be able to relive it over and over again!
Tuesday, October 4, 2011
Latest Doctors Visit
****Hmmmm For some reason this didn't post when I wrote it and post it, thankfully it did save though so I can post it now************
This was a very big appointment. This was my first appointment with my GP (Dr. B) following the 'retirement' of my rheumatologist (Dr. W). Sadly Dr. B did confirm that Dr. W did in fact have a stroke. Thankfully though he said Dr. W was getting around better now, had plumped up and gained some weight and seemed to be in good spirits. He also acknowledged that we now had a serious problem now that he was not around to treat me. There were a few different issues that I needed to go over and since some of them were quite important my mom decided to go to the appointment with me (he seems to listen to my mom's account of what goes on a bit more than what I tell him). As I can't remember the exact order of things, I will break it down by 'issue' that we were dealing with.
Depo Shot and Medications refills - Got my shot and no problems at all with the renewing of three of my medications. I even weighed a lighter weight than I was at my last appointment so that is a good thing too :) Strangely though my BP was slightly high (a lot high for me). He even made sure that I had adequate pain medications!!! Big big thing with him!
New doctor - Surprisingly he already had an idea as to who to send me to. Thankfully it is a doctor that is in my area and is an internist, geriatric specialist and rheumatologist so hopefully will be able to help me. Dr. B went through my chart and printed out a pile of reports to be sent to this new doctor. He printed out the last few appointments with Dr. W, a report from the neurologist that I saw last year, a few reports from my internist Dr. C and my most recent set of bloodwork. He went to print off a report from the clinic I went to about my knee earlier in the year, then asked what happened and when I said that they wouldn't do anything he ripped up the paper and said he didn't want anything negative to be sent with the referal. He wants me to get in and see this doctor before going in to more details about the frustrations and hard aspects of treating me as a patient. Unfortnatly when my mom asked if there was away to contact this doctor first to ask about him and his knowledge / experience with EDS he says that can't be done but that I should bring as much information that I could to the first appointment.
Osteoporosis - I was slightly concerned about the medication that I have been taking for the past year. The muscle pain the day after the medication has completely resolved thankfully! However, I have been getting very very bad heartburn for about a week after taking the medication. Dr. B went through the other options that I am on but that the only other medication that is better for me is not covered by insurance. He did suggest I look into them and I am going to see if it is feasible to just pay out of pocked for them (one is a yearly medication, the other twice a year). The pill I am on is the best and most safe choice for me. He was very very adament that I really really need to be on medication for it as take the EDS, add in the meds I am on and that is not a good combination but none of those meds can be changed around at the moment. He is going to allow me to take my losec (perscription strength proton pump inhibitor) as needed during those periods that my GERD gets out of control. (Of course, I took my month's pill yesterday and have not had any heartburn at all from it lol). This is showing that my GP is finally accepting that I can be 'trusted' to regulate some of my medications.
Barium Swallow - The main reason for this appointment was actually to go over the results of the barium swallow test I had done last month. Unfortunately it has led to no real answers, just more tests. There are 'things' in my stomach that can be one of two things - 1) Food particles embedded in my gastric wall or 2) Polyps. Because I had been fasting for the test, and the fact that this 'things' didn't move, even if it is 'just' stuck food, that food shouldn't be there. And we all know the things associated with polyps. In the test itself it suggested that there was no reason they could see for the swallowing issues, but that it was evident that I had severe (their world) acid reflux. The test suggested that an endoscopy could be done to biopsy these 'things' so we could figure out what they are and what we can do about them. This is when we find out that my internist / cardiologist is also apparently a gastroenterologist!! Mom and I are so very confused now as she (Dr.C) had the test suggested from a neurologist she refered me to but she had wanted my family doctor to be the one ordering the test. We have no clue why that happened. She is one of the doctors in the area that actually do the endoscopy test so I am to contact her about scheduling the test (Note - left a message a week ago and still have not heard back). This conversation did however lead to one of the greatest quotes of the appointment. Dr. B had asked about Dr. C doing the test and what she had to say about it all and mom told Dr. B that she seemed most concerned and interested in the fact that I appeared very depressed. Dr. B quickly replied "If she had half the things wrong that Stacey did she would be severely depressed too!"
Autoimmune - I had breifly mentioned this at the beginning of the appointment but it got 'lost' in all the other questions going on and I wasn't sure if Dr. B really heard me. Later he did try to tell me that the off values where from EDS until I told him that they weren't. I then told him that, even though I have been tested for atutoimmune once or twice a year for a long time, this was the first time that my ana was actually positive. I told him that Dr. W (my rheumy) always felt that there was something autoimmune going on but could never figure it out. Leading to the second best quote of the appointment "Well we have the proof right here" that there is something in the autoimmune realm going on. He doesn't know much about these illnesses and asked if I had other symptoms (which I do) and asked that I talk to Dr. C about it as well as brining it up with the new rhuematologist I would be seeing. He said he could do more bloodwork but would prefer to just leave it to the new doctor and see what he thinks.
This was a very big appointment. This was my first appointment with my GP (Dr. B) following the 'retirement' of my rheumatologist (Dr. W). Sadly Dr. B did confirm that Dr. W did in fact have a stroke. Thankfully though he said Dr. W was getting around better now, had plumped up and gained some weight and seemed to be in good spirits. He also acknowledged that we now had a serious problem now that he was not around to treat me. There were a few different issues that I needed to go over and since some of them were quite important my mom decided to go to the appointment with me (he seems to listen to my mom's account of what goes on a bit more than what I tell him). As I can't remember the exact order of things, I will break it down by 'issue' that we were dealing with.
Depo Shot and Medications refills - Got my shot and no problems at all with the renewing of three of my medications. I even weighed a lighter weight than I was at my last appointment so that is a good thing too :) Strangely though my BP was slightly high (a lot high for me). He even made sure that I had adequate pain medications!!! Big big thing with him!
New doctor - Surprisingly he already had an idea as to who to send me to. Thankfully it is a doctor that is in my area and is an internist, geriatric specialist and rheumatologist so hopefully will be able to help me. Dr. B went through my chart and printed out a pile of reports to be sent to this new doctor. He printed out the last few appointments with Dr. W, a report from the neurologist that I saw last year, a few reports from my internist Dr. C and my most recent set of bloodwork. He went to print off a report from the clinic I went to about my knee earlier in the year, then asked what happened and when I said that they wouldn't do anything he ripped up the paper and said he didn't want anything negative to be sent with the referal. He wants me to get in and see this doctor before going in to more details about the frustrations and hard aspects of treating me as a patient. Unfortnatly when my mom asked if there was away to contact this doctor first to ask about him and his knowledge / experience with EDS he says that can't be done but that I should bring as much information that I could to the first appointment.
Osteoporosis - I was slightly concerned about the medication that I have been taking for the past year. The muscle pain the day after the medication has completely resolved thankfully! However, I have been getting very very bad heartburn for about a week after taking the medication. Dr. B went through the other options that I am on but that the only other medication that is better for me is not covered by insurance. He did suggest I look into them and I am going to see if it is feasible to just pay out of pocked for them (one is a yearly medication, the other twice a year). The pill I am on is the best and most safe choice for me. He was very very adament that I really really need to be on medication for it as take the EDS, add in the meds I am on and that is not a good combination but none of those meds can be changed around at the moment. He is going to allow me to take my losec (perscription strength proton pump inhibitor) as needed during those periods that my GERD gets out of control. (Of course, I took my month's pill yesterday and have not had any heartburn at all from it lol). This is showing that my GP is finally accepting that I can be 'trusted' to regulate some of my medications.
Barium Swallow - The main reason for this appointment was actually to go over the results of the barium swallow test I had done last month. Unfortunately it has led to no real answers, just more tests. There are 'things' in my stomach that can be one of two things - 1) Food particles embedded in my gastric wall or 2) Polyps. Because I had been fasting for the test, and the fact that this 'things' didn't move, even if it is 'just' stuck food, that food shouldn't be there. And we all know the things associated with polyps. In the test itself it suggested that there was no reason they could see for the swallowing issues, but that it was evident that I had severe (their world) acid reflux. The test suggested that an endoscopy could be done to biopsy these 'things' so we could figure out what they are and what we can do about them. This is when we find out that my internist / cardiologist is also apparently a gastroenterologist!! Mom and I are so very confused now as she (Dr.C) had the test suggested from a neurologist she refered me to but she had wanted my family doctor to be the one ordering the test. We have no clue why that happened. She is one of the doctors in the area that actually do the endoscopy test so I am to contact her about scheduling the test (Note - left a message a week ago and still have not heard back). This conversation did however lead to one of the greatest quotes of the appointment. Dr. B had asked about Dr. C doing the test and what she had to say about it all and mom told Dr. B that she seemed most concerned and interested in the fact that I appeared very depressed. Dr. B quickly replied "If she had half the things wrong that Stacey did she would be severely depressed too!"
Autoimmune - I had breifly mentioned this at the beginning of the appointment but it got 'lost' in all the other questions going on and I wasn't sure if Dr. B really heard me. Later he did try to tell me that the off values where from EDS until I told him that they weren't. I then told him that, even though I have been tested for atutoimmune once or twice a year for a long time, this was the first time that my ana was actually positive. I told him that Dr. W (my rheumy) always felt that there was something autoimmune going on but could never figure it out. Leading to the second best quote of the appointment "Well we have the proof right here" that there is something in the autoimmune realm going on. He doesn't know much about these illnesses and asked if I had other symptoms (which I do) and asked that I talk to Dr. C about it as well as brining it up with the new rhuematologist I would be seeing. He said he could do more bloodwork but would prefer to just leave it to the new doctor and see what he thinks.
Tuesday, August 30, 2011
Replies to Comments - Em
Well, for some reason I can not post replies to any comments on this blog. I know a few people had this problem a while ago and if they can let me know what they did to fix it I would be very very happy :D So, since I can not post the replies directly to the comments, I will post them here. Both comments are from Em so here are the replies:
Reply to: "Starting to Get Depressed"
AAAHHH I feel horible! For some reason I didn't get an e-mail telling me that you left this comment! I would have responded a lot earlier if I had of!!!
There are sites to get looking for doctors, I know a few of them and actually got the name of the geneticist who diagnosed me off of one (but I had to travel 4+ hours for it). The problem right now is that my parents are getting just as frustrated with doctors and my care as I am. They get their hopes up that a new doctor might be able to 'fix' me but when nothing happens they don't get to be upset about it becasue I get upset about it and they are trying to cheer me up. (I know I am VERY lucky to have two supportive and caring parents!). So after years and years of doctors (I have had bad health my entire life basically) and having literally only 2 out of like 20 doctors help me, they just don't want to have to travel the 4+ hours to get to the next biggest city.
The county I live in (about 5 towns) has a population of 15,000. The city closest to us has 70,000 and we have to travel 1.5 hours to a city with a teaching hospital that we have already seemed to 'outgrow' the departments that I need. So the next two biggest cities are "H" that is about 3.5 hours away (but has the added benefit of having family about 1 hour away) or "T" which is about 4.5 hours away (again though we have family about an hour away). However, my dad is also 'medically retired' and has had his neck fused twice and has a bad back and shoulders and he is the one that would have to do all the driving so it's hard on him too.
I did actually find one piece of info that might actually be good news. However, I need to talk to my GP about if he feels I do have lupus on top of EDS before I start that journey. It is a rheumy clinic in the town 1.5 hours away but that just might be able to help and has a bonus of NOT being attached to the teaching hospital (have had a few 'divisions' of the hospital tell me nothing can be done).
Wow sorry for the long comment! I still have to reply to your other one too! However, you did give me a good idea for a blog post as I realized I have never posted how I went about getting diagnosed in the first place!
Okay I promise the next reply won't be as long!! Was just trying to explain the problems of living in small town's and having to do so much traveling to even get to see a doctor that might be able to help.
Reply to: "Things Going Pretty Well"
I did get your reply the night before the test luckily so didn't stress too much about the liquid. It was horrible but I was able to get it down at least. Apparently I ended up having a Barium Swallow as well as a Barium Meal as I had to do a lot more than you did, including the table going from vertical to horizontal and back to vertical. I thought I was just having the Barium Swallow (no table movement) but got everything done by the sounds of it. Not much to say here as you can read what happened here. I am slightly worried however as I am not sure that I am 'eliminating' it properly as last night (a week from the test) was the first time I noticed any changes and ended up with a fair deal more blood than normal. I know TMI right lol
Well that is it, will be posting a new post today or tomorrow to go over a few things. And again, if you know how to fix the comments issue please let me know!
Reply to: "Starting to Get Depressed"
AAAHHH I feel horible! For some reason I didn't get an e-mail telling me that you left this comment! I would have responded a lot earlier if I had of!!!
There are sites to get looking for doctors, I know a few of them and actually got the name of the geneticist who diagnosed me off of one (but I had to travel 4+ hours for it). The problem right now is that my parents are getting just as frustrated with doctors and my care as I am. They get their hopes up that a new doctor might be able to 'fix' me but when nothing happens they don't get to be upset about it becasue I get upset about it and they are trying to cheer me up. (I know I am VERY lucky to have two supportive and caring parents!). So after years and years of doctors (I have had bad health my entire life basically) and having literally only 2 out of like 20 doctors help me, they just don't want to have to travel the 4+ hours to get to the next biggest city.
The county I live in (about 5 towns) has a population of 15,000. The city closest to us has 70,000 and we have to travel 1.5 hours to a city with a teaching hospital that we have already seemed to 'outgrow' the departments that I need. So the next two biggest cities are "H" that is about 3.5 hours away (but has the added benefit of having family about 1 hour away) or "T" which is about 4.5 hours away (again though we have family about an hour away). However, my dad is also 'medically retired' and has had his neck fused twice and has a bad back and shoulders and he is the one that would have to do all the driving so it's hard on him too.
I did actually find one piece of info that might actually be good news. However, I need to talk to my GP about if he feels I do have lupus on top of EDS before I start that journey. It is a rheumy clinic in the town 1.5 hours away but that just might be able to help and has a bonus of NOT being attached to the teaching hospital (have had a few 'divisions' of the hospital tell me nothing can be done).
Wow sorry for the long comment! I still have to reply to your other one too! However, you did give me a good idea for a blog post as I realized I have never posted how I went about getting diagnosed in the first place!
Okay I promise the next reply won't be as long!! Was just trying to explain the problems of living in small town's and having to do so much traveling to even get to see a doctor that might be able to help.
Reply to: "Things Going Pretty Well"
I did get your reply the night before the test luckily so didn't stress too much about the liquid. It was horrible but I was able to get it down at least. Apparently I ended up having a Barium Swallow as well as a Barium Meal as I had to do a lot more than you did, including the table going from vertical to horizontal and back to vertical. I thought I was just having the Barium Swallow (no table movement) but got everything done by the sounds of it. Not much to say here as you can read what happened here. I am slightly worried however as I am not sure that I am 'eliminating' it properly as last night (a week from the test) was the first time I noticed any changes and ended up with a fair deal more blood than normal. I know TMI right lol
Well that is it, will be posting a new post today or tomorrow to go over a few things. And again, if you know how to fix the comments issue please let me know!
Tuesday, August 23, 2011
Barium Swallow Study
So after a few weeks of nerves and being scared about what I would actually have to do (and drink!), I went in this morning for my barium swallow study. I was unable to eat or drink anything after midnight last night and was up bright and (really) early so we could be at the hospital for 8:15am. Like normal, my mom got up early as well to take me in for the test (I don't go to tests alone anymore, just in case I feel too yucky to drive the 20+ minutes to get back home).
We get to the hospital and I get registered in for the test and told to take a seat and wait for my name to be called. I motioned to mom to move over to the other side of the area so I could hear my name being called and had barely sat down in the new seats when they came and called my name. Mom got up to go with me but the lady told her she could stay in the main waiting room and that I would be back in about 20-30 minutes. I get back to the area and am told to change into a gown, the old gowns where you put one on with the opening in the back and then another on like a housecoat with the opening in the front. Thankfully I have learned through all these years of testing and had worn yoga pants with no metal in them so I was able to leave those on. I then went and waited in a second waiting area but had only read a page or so in my book and I was being called into the testing area. (Note: There were two ladies in the room with me. There was the lady that was at the computer and handling all of that stuff, I'll call her the 'tech' and another lady that prepared all the mixtures and physically got me into the different positions, I'll call her the aide as she aided me lol and I have no clue how else to describe her)
I go into the testing room and they have me read this laminated sheet that stated what the test was, what was going to occur and what to do following the test. I then had to fill out a form with the normal questions but wasn't sure what to put for heart condition. I told them I was on heart medications and that my heart is structurally fine, it's the way my brain tells my heart to work that is the problem. Tech said that was okay because they just needed to know as they sometimes give an injection if your stomach empties too fast but if you are on heart medications or have any heart problem, they do not do the injection (yay a positive to dysautonomia :D). I also had to explain said dysautonomia and go over a breif description of what EDS was and what exactly my swallowing problems were. They seemed to be more interested in how I was with fluids more than how I was with solids for some reason. They then tell me how I would be starting standing up on this device and that it would then slowly be put into a horizontal position then after a few scans it would be put back into a vertical position. I mention then that because of the issues going on that I might get dizzy so tech said she would make it stand up as slow as she could.
So I go over and stand on the little ledge at the bottom of the table. The aide brings over a cup and a package. She tells me that this is a gas producer and that I need to swallow it down as soon as possible and that it will make me want to burp but I needed to try my hardest not to. She then dumps the crystals in the cup and I can hear fizzing and the amount getting larger in the cup so I gulped it down as quick as could be. The not burping was the hardest part (imagine guzzling 4 cans of pepsi and being told you can't burp!). A few shots (well special xray scans were done - I will just refer to them as shots as it's easier) were taken and then she brings over another cup. This is the barium and I had to hold it in my left hand and when the tech told me to start I had to drink it down as quickly as I could. Well this was the tricky part. It was so thick that I could only take very small little sips and I managed to gag a few times before managing to actually get it all down. The aide came over and took the cup and wiped me mouth off. I had to stand there and then turn to the left and then move this way and that way etc while they got all the shots they needed. The aide then came over to make sure that my feet were firmly planted and that I was lined up properly and then the tech made the bed go horizontally.
Okay now the horizontal part. The aide then came over to make sure that my feet were firmly planted and that I was lined up properly and then the tech made the bed go horizontally. Strangely this made my stomach feel bettter (probably because of the gas crap). I then had to do a 'log roll' from my back -> left side -> stomach -> right side -> back again. A bunch more shots were taken in different positions and then they put me in the main position (there was a specific name for it but I can not remember at this point). I was lying on my right side with my left leg bent up with me resting on it (like my body was at a 45* angle), my left arm up above my head and my righ arm straight down at my side. I did get a pillow for my head and do wish that I had of asked for one for my leg but didn't. A bunch more shots were taken and aide emerges with yet another cup. She gets this one ready with a straw and tells me not to move and that she would put the straw in my mouth when it was time. This was a thinner dilution of the barium. Tech wanted a few more shots and then aide put the straw in my mouth and I had to drink it down as fast as I could as well. I guess I was taking longer than normal as she kept asking the aide if I was almost done to which I almost wanted to ask her if she wanted that crap in my stomach or on her floor, because that is where it would be if I drank it any faster! Thankfully no gagging on this one! The aide did come over and wipe my mouth as I had some of the liquid on my lips and it turns chalky really quickly (and I was having a good ol' sweat so she wiped my face off as well which was nice). A bunch more moving around and rolling and shots and we get started on the last phase.
Horizontal -> Vertical! I was very nervous about this and even though I told both of them about the dysautonomia issues, I am pretty sure that they didn't really understand them. Aide made sure that I was lined up and had my feet planted properly and tech then started tilting it up. They got about half way up and the tech quickly had the aide come over and pull out a handle on the side for me to hold on to. When they had me all the way up they asked if I was okay or dizzy and miraculusly I felt fine! For about a minute and then everything started closing in and got very dizzy. The let me rest agains the bed for a bit but then we had to get on with the test. The last thing I had to do was take a mouthfull of the thinner barium drink and hold it in my mouth. Then the tech would count to three and I would have to gulp it all down in one go. We did three of these with different angles of my body for the shots and finally they told me I could go sit down. The aide got me a washcloth to wipe off my face and hands and I was surprised at how chalky and dry the liquid already was! A quick check of the shots and I was good to go. They made sure to tell me that I was to drink lots of liquids for the next few days (and that I would probably have white poop and to not be alarmed lol). I quickly got changed and went out to find mom.
The more I was walking the more lightheaded I was getting and I just really wanted to go to the car where I could sit down. I didn't even say a word to mom until we were out of the parking lot! It was then I realized I should have got a drink at the hospital's Tim Hortons so on the way home mom stopped and we both got Ice Cap's (figured the sugar might help a bit). Got home and curled up with K on the couch for a bit then downed a glass of chocolate milk and went back to bed. I got up and really didn't feel good at all. I kept drinking steadily but just felt 'yucky'. Went up for supper but couldn't eat much as I was having pains in my stomach. However, I now know that the strange pains I have been getting in my abdomen are from digestion issues as they have been very significant in those areas tonight. I have also been having autonomic issues. I haven't gone in to full sweats at all (except at the hosptail) but have been 'clammy' all day and night. Have been feeling pretty shakey as well and very tired. So with that all typed up, I am off to bed! My parents have to go out of town tomorrow as a friend's mother passed away so it will be just K and I all day tomorrow so I am hoping that I am feeling better in the morning!! Even if I am not, K is a great kid and it will be okay. We can just cuddle on the couch and watch movies :D
Side Note: Mom got a nice surprise today. While she was waiting in the main waiting area for me she noticed someone she hadn't seen in years. She used to be best friends with a lady that had a severly handicap son that was about 6 months older than me. M, the son, was always over at our house with his mom and mom was the only one he would ever let cut his hair. The mom passed away about 12 years ago and my mom hadn't seen M in about 10 or 11 years. Well she looked up at one point and saw M in his wheelchair with his worker. She was looking to see if it really was him when their eyes met and M started clapping his hands and laughing and just getting all excited. So my mom went over to them and said his name and he started laughing and giggleing all over again. The worker said that M obviously knew my mom from somewhere and was just as amazed that he recognized her after all these years. Mom was very happy to see him and to see how he was doing as we had lost touch over the years. Unfortnaly when I came out of the test I had one mission in mind (to get to the car asap) and didn't properly get to see him or see if he recognized me but it was still good. It was like mom was meant to go with me and today was the day I was meant to have this test (spent a good deal of telephone tag setting this appointment up) so mom could see M and know that he was okay.
We get to the hospital and I get registered in for the test and told to take a seat and wait for my name to be called. I motioned to mom to move over to the other side of the area so I could hear my name being called and had barely sat down in the new seats when they came and called my name. Mom got up to go with me but the lady told her she could stay in the main waiting room and that I would be back in about 20-30 minutes. I get back to the area and am told to change into a gown, the old gowns where you put one on with the opening in the back and then another on like a housecoat with the opening in the front. Thankfully I have learned through all these years of testing and had worn yoga pants with no metal in them so I was able to leave those on. I then went and waited in a second waiting area but had only read a page or so in my book and I was being called into the testing area. (Note: There were two ladies in the room with me. There was the lady that was at the computer and handling all of that stuff, I'll call her the 'tech' and another lady that prepared all the mixtures and physically got me into the different positions, I'll call her the aide as she aided me lol and I have no clue how else to describe her)
I go into the testing room and they have me read this laminated sheet that stated what the test was, what was going to occur and what to do following the test. I then had to fill out a form with the normal questions but wasn't sure what to put for heart condition. I told them I was on heart medications and that my heart is structurally fine, it's the way my brain tells my heart to work that is the problem. Tech said that was okay because they just needed to know as they sometimes give an injection if your stomach empties too fast but if you are on heart medications or have any heart problem, they do not do the injection (yay a positive to dysautonomia :D). I also had to explain said dysautonomia and go over a breif description of what EDS was and what exactly my swallowing problems were. They seemed to be more interested in how I was with fluids more than how I was with solids for some reason. They then tell me how I would be starting standing up on this device and that it would then slowly be put into a horizontal position then after a few scans it would be put back into a vertical position. I mention then that because of the issues going on that I might get dizzy so tech said she would make it stand up as slow as she could.
So I go over and stand on the little ledge at the bottom of the table. The aide brings over a cup and a package. She tells me that this is a gas producer and that I need to swallow it down as soon as possible and that it will make me want to burp but I needed to try my hardest not to. She then dumps the crystals in the cup and I can hear fizzing and the amount getting larger in the cup so I gulped it down as quick as could be. The not burping was the hardest part (imagine guzzling 4 cans of pepsi and being told you can't burp!). A few shots (well special xray scans were done - I will just refer to them as shots as it's easier) were taken and then she brings over another cup. This is the barium and I had to hold it in my left hand and when the tech told me to start I had to drink it down as quickly as I could. Well this was the tricky part. It was so thick that I could only take very small little sips and I managed to gag a few times before managing to actually get it all down. The aide came over and took the cup and wiped me mouth off. I had to stand there and then turn to the left and then move this way and that way etc while they got all the shots they needed. The aide then came over to make sure that my feet were firmly planted and that I was lined up properly and then the tech made the bed go horizontally.
Okay now the horizontal part. The aide then came over to make sure that my feet were firmly planted and that I was lined up properly and then the tech made the bed go horizontally. Strangely this made my stomach feel bettter (probably because of the gas crap). I then had to do a 'log roll' from my back -> left side -> stomach -> right side -> back again. A bunch more shots were taken in different positions and then they put me in the main position (there was a specific name for it but I can not remember at this point). I was lying on my right side with my left leg bent up with me resting on it (like my body was at a 45* angle), my left arm up above my head and my righ arm straight down at my side. I did get a pillow for my head and do wish that I had of asked for one for my leg but didn't. A bunch more shots were taken and aide emerges with yet another cup. She gets this one ready with a straw and tells me not to move and that she would put the straw in my mouth when it was time. This was a thinner dilution of the barium. Tech wanted a few more shots and then aide put the straw in my mouth and I had to drink it down as fast as I could as well. I guess I was taking longer than normal as she kept asking the aide if I was almost done to which I almost wanted to ask her if she wanted that crap in my stomach or on her floor, because that is where it would be if I drank it any faster! Thankfully no gagging on this one! The aide did come over and wipe my mouth as I had some of the liquid on my lips and it turns chalky really quickly (and I was having a good ol' sweat so she wiped my face off as well which was nice). A bunch more moving around and rolling and shots and we get started on the last phase.
Horizontal -> Vertical! I was very nervous about this and even though I told both of them about the dysautonomia issues, I am pretty sure that they didn't really understand them. Aide made sure that I was lined up and had my feet planted properly and tech then started tilting it up. They got about half way up and the tech quickly had the aide come over and pull out a handle on the side for me to hold on to. When they had me all the way up they asked if I was okay or dizzy and miraculusly I felt fine! For about a minute and then everything started closing in and got very dizzy. The let me rest agains the bed for a bit but then we had to get on with the test. The last thing I had to do was take a mouthfull of the thinner barium drink and hold it in my mouth. Then the tech would count to three and I would have to gulp it all down in one go. We did three of these with different angles of my body for the shots and finally they told me I could go sit down. The aide got me a washcloth to wipe off my face and hands and I was surprised at how chalky and dry the liquid already was! A quick check of the shots and I was good to go. They made sure to tell me that I was to drink lots of liquids for the next few days (and that I would probably have white poop and to not be alarmed lol). I quickly got changed and went out to find mom.
The more I was walking the more lightheaded I was getting and I just really wanted to go to the car where I could sit down. I didn't even say a word to mom until we were out of the parking lot! It was then I realized I should have got a drink at the hospital's Tim Hortons so on the way home mom stopped and we both got Ice Cap's (figured the sugar might help a bit). Got home and curled up with K on the couch for a bit then downed a glass of chocolate milk and went back to bed. I got up and really didn't feel good at all. I kept drinking steadily but just felt 'yucky'. Went up for supper but couldn't eat much as I was having pains in my stomach. However, I now know that the strange pains I have been getting in my abdomen are from digestion issues as they have been very significant in those areas tonight. I have also been having autonomic issues. I haven't gone in to full sweats at all (except at the hosptail) but have been 'clammy' all day and night. Have been feeling pretty shakey as well and very tired. So with that all typed up, I am off to bed! My parents have to go out of town tomorrow as a friend's mother passed away so it will be just K and I all day tomorrow so I am hoping that I am feeling better in the morning!! Even if I am not, K is a great kid and it will be okay. We can just cuddle on the couch and watch movies :D
Side Note: Mom got a nice surprise today. While she was waiting in the main waiting area for me she noticed someone she hadn't seen in years. She used to be best friends with a lady that had a severly handicap son that was about 6 months older than me. M, the son, was always over at our house with his mom and mom was the only one he would ever let cut his hair. The mom passed away about 12 years ago and my mom hadn't seen M in about 10 or 11 years. Well she looked up at one point and saw M in his wheelchair with his worker. She was looking to see if it really was him when their eyes met and M started clapping his hands and laughing and just getting all excited. So my mom went over to them and said his name and he started laughing and giggleing all over again. The worker said that M obviously knew my mom from somewhere and was just as amazed that he recognized her after all these years. Mom was very happy to see him and to see how he was doing as we had lost touch over the years. Unfortnaly when I came out of the test I had one mission in mind (to get to the car asap) and didn't properly get to see him or see if he recognized me but it was still good. It was like mom was meant to go with me and today was the day I was meant to have this test (spent a good deal of telephone tag setting this appointment up) so mom could see M and know that he was okay.
Tuesday, August 16, 2011
Things going pretty well
Making some pretty good progress around here. Some of it for me, some for others. For me, as my nephew is my number 1 priority in life, the most important part is that my dad has decided that maybe we should try medications for his 'inattentive adhd'. Mom agreed and has made an appointment to see the doctor about it next week. Mom does want to ask a bunch of questions as she is worried because K is a very very poor eater and one side effect is lack of appetite. Secondly it can cause problems sleeping and K wakes up most nights in the middle of the night and is wide awake for an hour or so (he reads his book while he is awake). We are going to try a few things about the sleeping issues and as much as I don't want K to have to go through bloodwork, I really think he should get checked out vitamin and health wise to make sure he isn't missing anything important (he does take a daily multivitame and does eat a bit from each food group except meat, but he eats eggs for protein). I think dad changed his mind as he has seen just how frustrated and upset K gets when he forgets things and how he gets really down on himself for forgeting things or not grasping what you are trying to tell him and none of that is his fault. We won't lose anything by trying the medications route. If it doesn't help him it's no big deal and we just stop giving them to him but I would rather do that than look back in ten years time and go through the 'what if's' of what could be done for him.
Secondly, I go in next tuesday for a Barium Swallow Test. Really really not looking forward to this but am hoping it will provide some answers. I am having issues eating certain items. Any meat with an ounce of fat on it, I can just not swallow. Breads are another no-no. Certain textures just won't go down either. I can eat only very small quantaties between the horrible heart burn (already on omeprazole for this) or the intense nausea I get once I start eating. I am having problems with feeling like I am getting something stuck in my throat all the time. Feels like I have no gag reflex at all. I take a pill and can feel it still in my throat and have to take another drink of water for it to go all the way down. I 'choke' on water when drinking so stick to a straw 90% of the time as that seems to help. I have also had the feeling for a very long time that my esophagus (I am horrid at spelling) gets kinks in it that are semi-painful that I have to rub my throat and try to get it realxed before things feel better. However, I am also very nervous about this test. From what I have read it sounds basically like a tilt table test to check what you are drinking. I can have nothing to eat or drink from midnight the night before and thankfully I am an early morning appointment slot. I am assuming that I should stop the omeprazole before the test so that the GERD will show up but I am not sure how long before hand. Als I am worried about the autonomic stuff if this test is in fact like a tilt table. One the one hand I am thinking that maybe I should skip my dose becasue I will be fasting and don't want a repeat of what happened after surgery but on the other hand I am thinking that I should take an extra dose to counteract the possible POTS flare up from the movement of the test. I am going to call my GP tomorrow as I have to make an appointment anyways and ask them about the medications, sadly though they have really no clue as to the autonomic issues to truly understand.
So basically two good things progressing around here which I thought I would share with all of you. I am glad that my parents have finally opened up to the possibility of medicating K. Don't get me wrong, I hate the fact that K might have to take medications but if it helps him to truly reach his potential I am all for it. He is above average in intelligence but tests way below that level. I just want him to get some self-confidence in himself and have him realize and accept that he is really one smart kid.
If anyone has had a barium swallow test and has any ideas / suggestions about the medication issues I am dealing with (mainly the beta blocker) I would to hear them! If you have done this test and have suggestions let me know too please :)
Secondly, I go in next tuesday for a Barium Swallow Test. Really really not looking forward to this but am hoping it will provide some answers. I am having issues eating certain items. Any meat with an ounce of fat on it, I can just not swallow. Breads are another no-no. Certain textures just won't go down either. I can eat only very small quantaties between the horrible heart burn (already on omeprazole for this) or the intense nausea I get once I start eating. I am having problems with feeling like I am getting something stuck in my throat all the time. Feels like I have no gag reflex at all. I take a pill and can feel it still in my throat and have to take another drink of water for it to go all the way down. I 'choke' on water when drinking so stick to a straw 90% of the time as that seems to help. I have also had the feeling for a very long time that my esophagus (I am horrid at spelling) gets kinks in it that are semi-painful that I have to rub my throat and try to get it realxed before things feel better. However, I am also very nervous about this test. From what I have read it sounds basically like a tilt table test to check what you are drinking. I can have nothing to eat or drink from midnight the night before and thankfully I am an early morning appointment slot. I am assuming that I should stop the omeprazole before the test so that the GERD will show up but I am not sure how long before hand. Als I am worried about the autonomic stuff if this test is in fact like a tilt table. One the one hand I am thinking that maybe I should skip my dose becasue I will be fasting and don't want a repeat of what happened after surgery but on the other hand I am thinking that I should take an extra dose to counteract the possible POTS flare up from the movement of the test. I am going to call my GP tomorrow as I have to make an appointment anyways and ask them about the medications, sadly though they have really no clue as to the autonomic issues to truly understand.
So basically two good things progressing around here which I thought I would share with all of you. I am glad that my parents have finally opened up to the possibility of medicating K. Don't get me wrong, I hate the fact that K might have to take medications but if it helps him to truly reach his potential I am all for it. He is above average in intelligence but tests way below that level. I just want him to get some self-confidence in himself and have him realize and accept that he is really one smart kid.
If anyone has had a barium swallow test and has any ideas / suggestions about the medication issues I am dealing with (mainly the beta blocker) I would to hear them! If you have done this test and have suggestions let me know too please :)
Tuesday, August 2, 2011
Starting to get depressed..
I know it has been a while, yet again, since I posted. Last week my family went away to a gorgeous cottage about 3 hours north of us and it was a very nice, quiet and pretty relaxing vacation. Until wednesday... Anyways I will write about that a little later (I wrote up a 'diary' of each day we were away and will get posted up here as soon as I get it off of my iPod Touch). The main thing right now though is I can feel myself starting to get depressed again but there is nothing I can really do. There are a few reasons for feeling like this:
1) After a couple of months in limbo waiting to see when my rheumatologist would be coming back from his absence, we read in the paper just before we went away that he was in fact retiring and that we had until August 5th to contact the office about getting copies of your files. I really honestly have absolutely no clue what to do about all this. This is the ONLY doctor that actually appears to give a crap about my quality of life and not just into drugging me up. He is the one that has listened to me, done all my referals, order all my tests, given me all my cortisone in my shoulder. The only one who has done anything really productive in my health and actually understands the concept of preventative medicine before we have a major problem. This comes when we were in the middle of a lot of different ongoing issues - my knee and the OS's at the clinic not wanting to operate and claiming my knee is stable (the dislocation last week says otherwise), the strong feeling that something autoimmune was going on (which now I have blood tests to show that he was right but can't go over them with him), the ongoing shoulder issue, the osteoporosis and wrist injuries issue and just keeping up on new treatments and medications and keeping my life having some quality to it. He is (was) the only rheumy in my town, the best in the next town (1 hour drive) already told me she wouldn't take me way back when I was diagnosed and my parents don't want to drive the 4+ hours to the other medically large towns. My GP just doesn't get EDS so that isnt an option either so it's going to be a lot of trial and error until we find a doctor that will a) take me as a patient, b) listen to me and treat me as an equal in knowledge on EDS c) willing to keep up to date on all things EDS, d) willing to try things to make things better and e) interested enough to have me as a full time patient in many different areas. Which leads me to:
2) When am I going to get something medically to help me? My right knee is messed up even though the knee clinic deemed it stable and not needing surgery yet I am still in considerable pain and not able to fully use the knee. Having to baby it or end up in severe pain. At the cottage last week I had to be driven to the beach even though it was only a 5 - 10 minute walk from our cottage as my knee just wouldn't make it. Right now my entire left arm is in trouble. I made a grab to catch a big beach umbrella / sun shade and managed to hurt the fingers, thumb and wrist initially but am up to the shoulder even being in bad enough pain to take a breakthrough med because. My left ankle just gets weaker and weaker as the days go by and I am seriously considering asking for cortisone in my hips. So many things that I would love to get fixed, through surgery, procedures or whatever but there are no doctor's willing to even attempt this as they will most likely not succeed 100% so they don't want that on their record. Even if I had a 50-50 chance of improvement in some areas, I am willing to risk it at this point. It is so heartbreaking to read of all these people going in for surgery, or having a doctor suggest a procedure etc knowing that there is no doctor that I have found that will do a damn for me.
I am just getting so sick of going to new doctor after new doctor only for those doctors to declare I am too risky and they don't want to try something because it could make it worse. I am sick of the doctor game and am being thrown right back into it at this point when I just don't want to do it anymore. I don't even know what to do anymore.
1) After a couple of months in limbo waiting to see when my rheumatologist would be coming back from his absence, we read in the paper just before we went away that he was in fact retiring and that we had until August 5th to contact the office about getting copies of your files. I really honestly have absolutely no clue what to do about all this. This is the ONLY doctor that actually appears to give a crap about my quality of life and not just into drugging me up. He is the one that has listened to me, done all my referals, order all my tests, given me all my cortisone in my shoulder. The only one who has done anything really productive in my health and actually understands the concept of preventative medicine before we have a major problem. This comes when we were in the middle of a lot of different ongoing issues - my knee and the OS's at the clinic not wanting to operate and claiming my knee is stable (the dislocation last week says otherwise), the strong feeling that something autoimmune was going on (which now I have blood tests to show that he was right but can't go over them with him), the ongoing shoulder issue, the osteoporosis and wrist injuries issue and just keeping up on new treatments and medications and keeping my life having some quality to it. He is (was) the only rheumy in my town, the best in the next town (1 hour drive) already told me she wouldn't take me way back when I was diagnosed and my parents don't want to drive the 4+ hours to the other medically large towns. My GP just doesn't get EDS so that isnt an option either so it's going to be a lot of trial and error until we find a doctor that will a) take me as a patient, b) listen to me and treat me as an equal in knowledge on EDS c) willing to keep up to date on all things EDS, d) willing to try things to make things better and e) interested enough to have me as a full time patient in many different areas. Which leads me to:
2) When am I going to get something medically to help me? My right knee is messed up even though the knee clinic deemed it stable and not needing surgery yet I am still in considerable pain and not able to fully use the knee. Having to baby it or end up in severe pain. At the cottage last week I had to be driven to the beach even though it was only a 5 - 10 minute walk from our cottage as my knee just wouldn't make it. Right now my entire left arm is in trouble. I made a grab to catch a big beach umbrella / sun shade and managed to hurt the fingers, thumb and wrist initially but am up to the shoulder even being in bad enough pain to take a breakthrough med because. My left ankle just gets weaker and weaker as the days go by and I am seriously considering asking for cortisone in my hips. So many things that I would love to get fixed, through surgery, procedures or whatever but there are no doctor's willing to even attempt this as they will most likely not succeed 100% so they don't want that on their record. Even if I had a 50-50 chance of improvement in some areas, I am willing to risk it at this point. It is so heartbreaking to read of all these people going in for surgery, or having a doctor suggest a procedure etc knowing that there is no doctor that I have found that will do a damn for me.
I am just getting so sick of going to new doctor after new doctor only for those doctors to declare I am too risky and they don't want to try something because it could make it worse. I am sick of the doctor game and am being thrown right back into it at this point when I just don't want to do it anymore. I don't even know what to do anymore.
Monday, July 11, 2011
A week long 'vacation' and a new toy
K passed into grade 5 next year, out of 19 marks he got 13 B's and only 6 C's which is amazing for him and we are all so proud of him. He has been wanting an iPod touch for quite a long time now (almost a year) and had been saving up his money and had got to $100 on his own. So my parents told him that they would pay for the rest of the iPod since he did so well saving his money and so well in school (and Karate - he is now a green belt!!!) and I told him that I would pay for his first iTunes card and to put an extended warant on it. He got his on June 30th. I had some troubles getting it all set up and working because of the strong protection I have on our WiFi network and the fact that we never knew that you had to have either an iTunes card or a credit card on file to set up an account. Got those figured out though and that evening he was able to play it. We kept looking for free games for him but as it was getting late, I had him write down 10 games that he wanted and I would work on downloading them as he had to go to bed.
Well I downloaded those games and then went searching in the App Store to see what else there was. After a lot of looking and drooling over Apps and songs that I would love to have, on July 2nd I went in to town and bought myself an iPod as well (July 1st was Canada day so all the stores were closed). I have already downloaded a few CD's, a bunch of games, a bunch of really cool medical type applications and lots more :) So K and I have both been pretty much glued to our iPod's the last few weeks.
As for the 'vacation', it was really only my mom, K and I going up to visit my grandmother and some other family. My one cousin has some serious issues that she needs to work out for herself as she is really getting not only herself, but the entire family up there, into problems and just way too much drama. My grandmother is so stressed out that we are all worried that the issues that my cousin is going through is going to end up giving my grandmother another heartattack or other serious health complication. And of course somehow I got roped into the drama and feeling so guilty myself and feeling so horrible that something I did innocently caused a big scene and a lot of yelling and crying.
As a bit of a back story, one of my cousin's has two children, both boys: D1 is 13 (he has ADHD and is on medications because of this) and D2 is 10. While I was growing up we always played this one game of cards (not sure where it came from as I have heard no one else that has played any type or version of this game) basically on most nights the entire family is together. We got out of that as my generation got older and while K's generation was too young. Well D1 loves to play games and had been asking relentlessly for a few days to play a game of cards. I managed to get my mom to agree to play (more on that part later) and she was too 'tired' but myself, K, D1, D2 and their mom all sat down to play this game. We were playing cards while 'America's Got Talent' was on and I gave up watching the show to play the card game
We hadn't all even sat down yet when D1 said he would be right back. He comes back to the house with a drumstick and some chips and sat back down to play cards. I wasn't too pleased about this as I had been telling K that if he wanted some of the taffy I bought him, and the boys were around, he would have to offer to share his candy. To be telling him this and then to have D1 bring over not one, but two treats didn't leave me too impressed. After that something else came up with him running home to get his own pennies (we 'gamble' with pennies in the game) instead of just using some of his moms. A few times while we were playing I had to ask Kyler to pay attention to the game instead of watching the show and asked D1 and D2 a few times as well. I had got up to get myself some Doritos and D1 was again relentless in asking for some. I pointed out that he had already had some of his own but then gave in and told him that when I opened the bag I would give him some. I had just opened the bag and it was my turn to shuffle and deal. While doing this he asks again for chips and I asked him if it looked like I was busy doing something (yes) and that maybe he should wait until I am not busy to ask. After I was done dealing I poured him a bowl of chips. After a good half hour or so of having to repeatidly ask D1 to pay attention to the game I finally said "D1 are you playing this game or watching TV, you can not do both" and he mumbled and got back to the game. We finished up shortly after and all just kept our 'winnings' out so we could play the next day. I thought it was a good night and had enjoyed playing a game with the kids.
About 30 minutes after they all left (My nan and both of my cousins and their familes all live in the same small townhouse complex that is maybe half a block big in total, so it takes about 30 seconds to get from one place to the other) Kyler and I were cuddling on the couch and watching the news (this was while William and Catherine were in Canada and my nan was just fixed on the news). Nan answers it and then tells me that the phone is for me. I answer it and it is D1 informing me that I had really hurt him and that K isn't the only one with a disability, he has one too and can't focus on things and it wasn't fair to call him out and on and on about how hurt he was and his disability. I calmly told him that he had been bugging us for 2 hours to play the game, we agreed to play it because of him and that I didn't yell at him or get mad at him I simply asked him to choose between watching the television show or playing the card game. He mumbled okay and hung up. That really pissed me off and got me very upset. I was crying at the time while telling nan and mom what happened and then got really mad because out of everyone in that family, I have been the one to show him the most respect and patience that last few days and didn't appreciate that and I got up and went to my room and shut the door. That's when it all went crazy.
Nan was upset because I was upset and then his mom called saying that she had told him not to call and to just talk with me in the morning but that D1 took the phone and ran off to call me. Then nan made the mistake by saying that she was embarassed because of the behaviour and it being around mom and me. Well that then set my cousin off as to oh they are embarasements now and just on and on. Nan talked to my cousin and D1 and then my cousin hung up. Mom then called to talk to my cousin and said basically that she was sitting right there and heard the entire thing and no one was yelled at but yes I asked D1 to pick one thing to focus on and that he has been asked many times. Mom then goes on to tell her that we have been watching the show since it came on and that I would have really liked to see what was happening but I chose to play cards with the kids. My cousin and my mom talked breifly and hung up and then D1 called back to talk to nan and then nan basically snapped and said 'She has a disability too (D1 saying that I don't) yes she does, and a lot worse of one than you have, did you ever think of that?' and then he was told that there would be no more phone calls that night and surprisingly they listened to it. As a side note I should say that my bedroom up there, the window looks right across the small parking lot (3 card lengths total between doors) and I could hear a LOT of screaming going on during the time of these phone calls as well as after.
Nan was upset at all this but mom held her ground surprisingly. She told my nan that I had spent many hours alone those few days talking with D1 and that I always showed him respect. She said she was upset about it as well because it upset me and I don't take those situations easily with my health problems. She went on that the part that no one was saying was the worst part. D1 is a child and I am an adult and under no situation at all should a child talk to an adult like that. That D1 honestly has no respect for adults and should never been allowed to say anything along that line what-so-ever. However the next day was, in a way, worse. D1 apologized to me and gave me a hug and I told him that he had really hurt my feelings and that I probably wouldn't be playing games with him for a while. My cousin however never emerged the next day at all. When the kids came over they told nan she was in bed. We sent the kids home for supper as mom was taking nan, K and I out for her birthday supper and my nan sent food over for the kids to eat for supper. She later called around 8:30 and talked to mom breifly to say that she probably wouldn't see us before we left the next day and that she was going to go to bed now as she wasn't feeling well. However, D1 later told me (not knowing what his mom had told my mom) that she was up watching TV that night.
We didn't leave the city until almost 11am and still there was no sight of her at all. That was really worrying my mom and I as we both caught glimpses of how she was when she was taking opiods. She was really shouting in her talking, just really loud, she was slurring her words a lot, anytime we heard from her it was she 'was going to lie down for a bit' or 'I have to go have a nap' or 'im going to bed early' which when she was really deep in her addiction you never saw her out of bed. She was also slightly paranoid and just really off. It scares us because she has no motivation at all to get off of methadone and until she realizes that she is on the med for drug abuse and not for pain control, nothing is going to change. Mom and I both sensed that she is back on some other drug again or has managed to get her methadone doseage increased, either way not a good thing at all. She thinks we are all attacking her but all we want her to do is to get some serious help and get better before she does serious harm to her children (they are already showing signs of mental problems involving their mom).
Well I downloaded those games and then went searching in the App Store to see what else there was. After a lot of looking and drooling over Apps and songs that I would love to have, on July 2nd I went in to town and bought myself an iPod as well (July 1st was Canada day so all the stores were closed). I have already downloaded a few CD's, a bunch of games, a bunch of really cool medical type applications and lots more :) So K and I have both been pretty much glued to our iPod's the last few weeks.
As for the 'vacation', it was really only my mom, K and I going up to visit my grandmother and some other family. My one cousin has some serious issues that she needs to work out for herself as she is really getting not only herself, but the entire family up there, into problems and just way too much drama. My grandmother is so stressed out that we are all worried that the issues that my cousin is going through is going to end up giving my grandmother another heartattack or other serious health complication. And of course somehow I got roped into the drama and feeling so guilty myself and feeling so horrible that something I did innocently caused a big scene and a lot of yelling and crying.
As a bit of a back story, one of my cousin's has two children, both boys: D1 is 13 (he has ADHD and is on medications because of this) and D2 is 10. While I was growing up we always played this one game of cards (not sure where it came from as I have heard no one else that has played any type or version of this game) basically on most nights the entire family is together. We got out of that as my generation got older and while K's generation was too young. Well D1 loves to play games and had been asking relentlessly for a few days to play a game of cards. I managed to get my mom to agree to play (more on that part later) and she was too 'tired' but myself, K, D1, D2 and their mom all sat down to play this game. We were playing cards while 'America's Got Talent' was on and I gave up watching the show to play the card game
We hadn't all even sat down yet when D1 said he would be right back. He comes back to the house with a drumstick and some chips and sat back down to play cards. I wasn't too pleased about this as I had been telling K that if he wanted some of the taffy I bought him, and the boys were around, he would have to offer to share his candy. To be telling him this and then to have D1 bring over not one, but two treats didn't leave me too impressed. After that something else came up with him running home to get his own pennies (we 'gamble' with pennies in the game) instead of just using some of his moms. A few times while we were playing I had to ask Kyler to pay attention to the game instead of watching the show and asked D1 and D2 a few times as well. I had got up to get myself some Doritos and D1 was again relentless in asking for some. I pointed out that he had already had some of his own but then gave in and told him that when I opened the bag I would give him some. I had just opened the bag and it was my turn to shuffle and deal. While doing this he asks again for chips and I asked him if it looked like I was busy doing something (yes) and that maybe he should wait until I am not busy to ask. After I was done dealing I poured him a bowl of chips. After a good half hour or so of having to repeatidly ask D1 to pay attention to the game I finally said "D1 are you playing this game or watching TV, you can not do both" and he mumbled and got back to the game. We finished up shortly after and all just kept our 'winnings' out so we could play the next day. I thought it was a good night and had enjoyed playing a game with the kids.
About 30 minutes after they all left (My nan and both of my cousins and their familes all live in the same small townhouse complex that is maybe half a block big in total, so it takes about 30 seconds to get from one place to the other) Kyler and I were cuddling on the couch and watching the news (this was while William and Catherine were in Canada and my nan was just fixed on the news). Nan answers it and then tells me that the phone is for me. I answer it and it is D1 informing me that I had really hurt him and that K isn't the only one with a disability, he has one too and can't focus on things and it wasn't fair to call him out and on and on about how hurt he was and his disability. I calmly told him that he had been bugging us for 2 hours to play the game, we agreed to play it because of him and that I didn't yell at him or get mad at him I simply asked him to choose between watching the television show or playing the card game. He mumbled okay and hung up. That really pissed me off and got me very upset. I was crying at the time while telling nan and mom what happened and then got really mad because out of everyone in that family, I have been the one to show him the most respect and patience that last few days and didn't appreciate that and I got up and went to my room and shut the door. That's when it all went crazy.
Nan was upset because I was upset and then his mom called saying that she had told him not to call and to just talk with me in the morning but that D1 took the phone and ran off to call me. Then nan made the mistake by saying that she was embarassed because of the behaviour and it being around mom and me. Well that then set my cousin off as to oh they are embarasements now and just on and on. Nan talked to my cousin and D1 and then my cousin hung up. Mom then called to talk to my cousin and said basically that she was sitting right there and heard the entire thing and no one was yelled at but yes I asked D1 to pick one thing to focus on and that he has been asked many times. Mom then goes on to tell her that we have been watching the show since it came on and that I would have really liked to see what was happening but I chose to play cards with the kids. My cousin and my mom talked breifly and hung up and then D1 called back to talk to nan and then nan basically snapped and said 'She has a disability too (D1 saying that I don't) yes she does, and a lot worse of one than you have, did you ever think of that?' and then he was told that there would be no more phone calls that night and surprisingly they listened to it. As a side note I should say that my bedroom up there, the window looks right across the small parking lot (3 card lengths total between doors) and I could hear a LOT of screaming going on during the time of these phone calls as well as after.
Nan was upset at all this but mom held her ground surprisingly. She told my nan that I had spent many hours alone those few days talking with D1 and that I always showed him respect. She said she was upset about it as well because it upset me and I don't take those situations easily with my health problems. She went on that the part that no one was saying was the worst part. D1 is a child and I am an adult and under no situation at all should a child talk to an adult like that. That D1 honestly has no respect for adults and should never been allowed to say anything along that line what-so-ever. However the next day was, in a way, worse. D1 apologized to me and gave me a hug and I told him that he had really hurt my feelings and that I probably wouldn't be playing games with him for a while. My cousin however never emerged the next day at all. When the kids came over they told nan she was in bed. We sent the kids home for supper as mom was taking nan, K and I out for her birthday supper and my nan sent food over for the kids to eat for supper. She later called around 8:30 and talked to mom breifly to say that she probably wouldn't see us before we left the next day and that she was going to go to bed now as she wasn't feeling well. However, D1 later told me (not knowing what his mom had told my mom) that she was up watching TV that night.
We didn't leave the city until almost 11am and still there was no sight of her at all. That was really worrying my mom and I as we both caught glimpses of how she was when she was taking opiods. She was really shouting in her talking, just really loud, she was slurring her words a lot, anytime we heard from her it was she 'was going to lie down for a bit' or 'I have to go have a nap' or 'im going to bed early' which when she was really deep in her addiction you never saw her out of bed. She was also slightly paranoid and just really off. It scares us because she has no motivation at all to get off of methadone and until she realizes that she is on the med for drug abuse and not for pain control, nothing is going to change. Mom and I both sensed that she is back on some other drug again or has managed to get her methadone doseage increased, either way not a good thing at all. She thinks we are all attacking her but all we want her to do is to get some serious help and get better before she does serious harm to her children (they are already showing signs of mental problems involving their mom).
Friday, June 24, 2011
Updates are done - as well as a new update lol
Well I have finally got all the posts up that I needed to do (I think I did at least) and believe I am now caught up. For those of you who have been trying to follow this but got confused I apologize. I had a lot of different topics that I wanted to blog about, if only so I have it as a 'record' for myself and to also try to explain why I have been quiet for so long. So, I wrote seven posts over the last few days to update on all that has been going on. I will list those seven along with a link to get to that post, and they will then be in order as I did not write them in any particular order. Here they go:
My nephews doctor's appointment regarding learning difficulties and how we can help him
My own doctor's appointment with my GP and what we learned and decided to do
The report that my internist / cardiologist wrote up and sent to my GP (who then gave it to me)
A great K moment, by his amazingly proud Auntie (Note: We got his grade back and he got a B+!!!)
K's 9.5th Birthday Party
An unsettling conversation with my brother
Reply from a letter that I send to a very informed EDS trained Doctor
And those are the entries that took me forever to finally finish but I believe each one of those entries are important and needed me to tell about for some reason or another. Now on to the current update :)
The increasing of the elavil is kicking my butt! When I started on it years ago most doctor's were shocked as it did not make me tired at all and did not contribute to a good sleep. Apparently I fell into the 5% of people who do not get tired from it. Well adding this itty bitty little bit extra (I was on 100mg, now up to 110mg) is making be absolutly exhausted! All I want to do is sleep, I can sleep for 12 hours a night and be ready for a nap just two hours after I wake up! I do know however that when I started this medication my health and body were not as badly affected by the EDS where nows there has been a lot of changes. It has only been a week and I know I have to give it plenty of time for my body to adjust to it so going to give it another week at minimum, probably more like a full month before I decide anything. I just want these headaches gone!!
Been having more and more joint issues. My right shoulder has been really acting up lately. I went back to taking the neurontin twice a day instead of once a day as the burning nerve pain was getting way out of hand. Unfortunatly the increase hasn't seemed to help too much. I now basically have that burning pain 24/7. I am honestly a little nervous putting ice or heat on it as I am not sure how good the skin is there and I don't want to end up doing more damage than there already is. Add to this I am now also getting basic pain. If I try to reach in front of me to get something (like sitting on my couch and reaching forward to get a drink) I get a horrible stabbing pain right into my back that sends enough of a jolt through me that I have already been modifying stuff to stop this even though it's not been that long. And then add the basic 'tired' feeling and you have a really great shoulder pain trifecta!
My hip is also causing issues. Last night I went to bed and read for a while. When I tried to roll over to turn the light out I got a shooting pain into my hip area that took my breath away. I then noticed that the way I was laying, my left foot was in the position that the entire arch side was right on the bed so I had my entire leg turned a little over quarter of the way in. I finally managed to get the leg to go straight only to find that I could now no longer bend my leg. It got to the point that I almost called my mom upstairs to come down to help me. However, after a dose of advil and breakthrough meds as well as the warm waterbed and me gently massaging the area and I could move again. It is defintly not something I want to experience again that is for sure!!!!
As I mentioned in one of the posts, I only noticed tonight that I have a positive ANA factor on my recent round of bloodwork. I had mistakenly thought that the 'Postive' was part of the C-Reactive Protein test until I looked further. At this point I honestly don't know what to think. Going to google for a while and let it sink in and will post soon about where I am at and what my plans for the future, medically at least, are.
My nephews doctor's appointment regarding learning difficulties and how we can help him
My own doctor's appointment with my GP and what we learned and decided to do
The report that my internist / cardiologist wrote up and sent to my GP (who then gave it to me)
A great K moment, by his amazingly proud Auntie (Note: We got his grade back and he got a B+!!!)
K's 9.5th Birthday Party
An unsettling conversation with my brother
Reply from a letter that I send to a very informed EDS trained Doctor
And those are the entries that took me forever to finally finish but I believe each one of those entries are important and needed me to tell about for some reason or another. Now on to the current update :)
The increasing of the elavil is kicking my butt! When I started on it years ago most doctor's were shocked as it did not make me tired at all and did not contribute to a good sleep. Apparently I fell into the 5% of people who do not get tired from it. Well adding this itty bitty little bit extra (I was on 100mg, now up to 110mg) is making be absolutly exhausted! All I want to do is sleep, I can sleep for 12 hours a night and be ready for a nap just two hours after I wake up! I do know however that when I started this medication my health and body were not as badly affected by the EDS where nows there has been a lot of changes. It has only been a week and I know I have to give it plenty of time for my body to adjust to it so going to give it another week at minimum, probably more like a full month before I decide anything. I just want these headaches gone!!
Been having more and more joint issues. My right shoulder has been really acting up lately. I went back to taking the neurontin twice a day instead of once a day as the burning nerve pain was getting way out of hand. Unfortunatly the increase hasn't seemed to help too much. I now basically have that burning pain 24/7. I am honestly a little nervous putting ice or heat on it as I am not sure how good the skin is there and I don't want to end up doing more damage than there already is. Add to this I am now also getting basic pain. If I try to reach in front of me to get something (like sitting on my couch and reaching forward to get a drink) I get a horrible stabbing pain right into my back that sends enough of a jolt through me that I have already been modifying stuff to stop this even though it's not been that long. And then add the basic 'tired' feeling and you have a really great shoulder pain trifecta!
My hip is also causing issues. Last night I went to bed and read for a while. When I tried to roll over to turn the light out I got a shooting pain into my hip area that took my breath away. I then noticed that the way I was laying, my left foot was in the position that the entire arch side was right on the bed so I had my entire leg turned a little over quarter of the way in. I finally managed to get the leg to go straight only to find that I could now no longer bend my leg. It got to the point that I almost called my mom upstairs to come down to help me. However, after a dose of advil and breakthrough meds as well as the warm waterbed and me gently massaging the area and I could move again. It is defintly not something I want to experience again that is for sure!!!!
As I mentioned in one of the posts, I only noticed tonight that I have a positive ANA factor on my recent round of bloodwork. I had mistakenly thought that the 'Postive' was part of the C-Reactive Protein test until I looked further. At this point I honestly don't know what to think. Going to google for a while and let it sink in and will post soon about where I am at and what my plans for the future, medically at least, are.
Tuesday, June 21, 2011
Letter from EDS Doctor
So following getting the bloodwork results from my doctor I got thinking. I was thinking that I always thought that C-Reactive Protein was a test about inflamation. So I get on google and search for it and find out that yes, it tests for inflamation. I then get thinking because I was sure that EDS was a non-inflamatory condition. So I start searching for C-Reactive Protein (CRP for the purpose of this post!) and EDS and can only come up with people that have the vascular type having elevated CRP. I also start realizing that CRP can also be a test for autoimmune conditions. My rheumy suspects I have some type of autoimmune disorder but doesnt know which one, if any. My rheumatoid factor and ANA have always come back negative (except for this latest batch which I just noticed when typing up the post about my dr's appointment :S) so it has never been pushed farther. With no idea what could be causing the elevation and wondering if EDS actually would cause elevation, I got on facebook and sent a breif letter to an EDS doctor that is on there and who provides answers and help to those who ask it. So basically I asked if EDS would cause the elevated CRP or if we should be looking into auto-immune. Imagine my shock when only a few days later I get a reply!!
His advice is that it is not usually elevated in EDS but there are many reasons for it. He suggests waiting a month and then redoing the tests to see what those values are and if it is still elevated for me to follow-up with my rheumatologist.
So the plan is that I will call my GP's office (have to make a call there anyways) and ask for that bloodwork (and the ANA now that I noticed it is positive!) to be done again to see what those values are and then go in and talk with my GP about them as my Rheumy is still not back and most peolpe are saying that he probably won't be coming back :(
* Looking at the bloodwork sheet, my GP highlighted two numbers and the CRP test name so I figured that the number and the 'positive' both went with the CRP until I took a better look at it tonight to write up the entry I did about my dr's visit outcome.
His advice is that it is not usually elevated in EDS but there are many reasons for it. He suggests waiting a month and then redoing the tests to see what those values are and if it is still elevated for me to follow-up with my rheumatologist.
So the plan is that I will call my GP's office (have to make a call there anyways) and ask for that bloodwork (and the ANA now that I noticed it is positive!) to be done again to see what those values are and then go in and talk with my GP about them as my Rheumy is still not back and most peolpe are saying that he probably won't be coming back :(
* Looking at the bloodwork sheet, my GP highlighted two numbers and the CRP test name so I figured that the number and the 'positive' both went with the CRP until I took a better look at it tonight to write up the entry I did about my dr's visit outcome.
Sunday, June 19, 2011
Conversation with Brother
It is no secret that my brother and I do not get along, and that that would also be a gross understatement. I would be perfectly happy if he just disappeard and have no use for him. I don't like being around him and the stress of him just being in the house sends my autonomic issues spiraling. Which made this breif conversation so upsetting and almost threatened.
He comes down stairs and looks in my doorway to my room (I have to leave the door open so my dog can get in and out as he pleases, otherwise the door would be shut when he is here). He asks me if he can ask a favour and I ask what and he asks me if I can keep my pain killers downstairs and in my room. I tell him I can't and won't because. He asks why and I tell him that I am not going to go up and down a flight of stairs if I need a pain killer as I am upstairs most of the time I would take them. He then goes "I'm just saying" and left. Made me to feel that if / when he goes back to taking drugs it would be my fault because I taunted him with them and made them available. He comes back and asks me to at least hide them better. I told him that the only way he would know where they are is if he went looking for them. He replies that they are on the top of the fridge and that 'hide them better, they are right there, the demerol is right there'. Again I state that there are many bottles on top of the fridge as mom and dad keep theirs up there as well and that to know right where they are, one would have to be looking for them. He then left.
I am sorry, I am not going to hide away my pills just because a known drug addict (who has stolen my pain medications twice before - that I know of) who is clean comes to the house for a few hours a week. I have never touched my pain killers upstairs if he is in the house. He knows that they are in the house so maybe he shouldnt' have been looking so hard at the containers that were on top of the fridge. It just really pissed me off and left me in a bad way. I was so nauseated the rest of that night and shakey and 'weak' felling becaue of the stress of that conversations. Surprisngly though my mom hasn't mentioned anything so either for once in his life he didn't whine to mommy or mom told him the same things that I told him.
For the record - I keep maybe 5, maximum 10, breakthrough pain meds upstairs in case I need them. I also keep count of them and feel that following this conversation, I need to really make sure and keep an accurate count of them, at least count them on saturdays and again on sundays when he leaves.
He comes down stairs and looks in my doorway to my room (I have to leave the door open so my dog can get in and out as he pleases, otherwise the door would be shut when he is here). He asks me if he can ask a favour and I ask what and he asks me if I can keep my pain killers downstairs and in my room. I tell him I can't and won't because. He asks why and I tell him that I am not going to go up and down a flight of stairs if I need a pain killer as I am upstairs most of the time I would take them. He then goes "I'm just saying" and left. Made me to feel that if / when he goes back to taking drugs it would be my fault because I taunted him with them and made them available. He comes back and asks me to at least hide them better. I told him that the only way he would know where they are is if he went looking for them. He replies that they are on the top of the fridge and that 'hide them better, they are right there, the demerol is right there'. Again I state that there are many bottles on top of the fridge as mom and dad keep theirs up there as well and that to know right where they are, one would have to be looking for them. He then left.
I am sorry, I am not going to hide away my pills just because a known drug addict (who has stolen my pain medications twice before - that I know of) who is clean comes to the house for a few hours a week. I have never touched my pain killers upstairs if he is in the house. He knows that they are in the house so maybe he shouldnt' have been looking so hard at the containers that were on top of the fridge. It just really pissed me off and left me in a bad way. I was so nauseated the rest of that night and shakey and 'weak' felling becaue of the stress of that conversations. Surprisngly though my mom hasn't mentioned anything so either for once in his life he didn't whine to mommy or mom told him the same things that I told him.
For the record - I keep maybe 5, maximum 10, breakthrough pain meds upstairs in case I need them. I also keep count of them and feel that following this conversation, I need to really make sure and keep an accurate count of them, at least count them on saturdays and again on sundays when he leaves.
LONG over due update!
I was realizing today that I have not updated this blog in a very long time. A few things medically have happened (dr's appointment and getting reports from specialists) and even more non-medical (nephews birthday party, conversating with brother, nephews dr appointment) things have occured. Instead of just posting a pile of updates that will have the date stamp of a few days among them, I have decided that I will back date the entries to the day that they acctually occured. I will then post in this post the links to those entries so things don't get too confusing (hopefully). Will start the updates tonight and will probably take a day or two to finish them all. So basically, until there are a lot of links in this entry, I would just wait until I post those links before reading entries.
Friday, June 17, 2011
K's Birthday Party
Since K has a Christmas birthday (which is actually also my birthday, he was born on my 20th birthday) he never really gets a birthday party. He has a party two years ago for his 7.5th birthday but we never threw one last year. So he was overdue for a party so we decided to through him a "Happy 9 1/2-th Birthday!". Becasue of the layout of our house, having a bunch of 9 - 10 year old boys over was not appealing at all so we made it a 'destination' party of his choice. He got to pick from lazer tag, bowling or a movie. Since a friend had just had a movie party he decided to go with lazer tag.
We invited seven kids to go (to make it an even eight) but one couldn't make it so it was K and his friends - A,C,N & T from his class, B from one grade up and J from one grade down (the just live up the street and are good friends of K's). We booked everything for the 17th and it was real easy as the lazer tag place also offered a package for two games of play, pizza and pop for all of them. That left not that much to do. We went over at the beginning of the week and let him pick out which cake he wanted (He decided on a cake that had ice cream cones cut in half and filled with icing all around the cake and it to be done in green) and mom also got a pack of cupcakes in case the kids didn't like the chocolate cake. Mom picked up some vanilla ice cream, some cotton candy and some 'sprinkle party cake' ice cream to bring along with us as well.
(Moment of honestly here; Beware of ranting and annoyance)
I will admit at this point that I wasn't too happy about this party. When we had his 7.5 party mom complained about it all and said that she was never going to do this again and I was in charge of birthdays. Over the last two years I have asked multiple times (for his 8th, 8.5th and 9th birthdays) and she kept blowing it off. Once my dad decided that he was going to have a birthday everything was set up in the matter of days with no one asking me about it. I didn't find out about it until the date had been booked for the party!! After that, anything I questioned about the party I got snotty remarks about how I can never be pleased and just want everything done my way. I only questioned two things - What kind of pizza and to see if just a plain cheese one could be ordered (it was set up as just pepperoni that was being served) seperatly to be ordered for the party or if we could pick up our own food to be ate there during the party. Well neither of these questions were even asked of the place so K had to have supper before we left for his party because he would not like any of the food there (to me that just seems so wrong!). The second issue is that I asked mom multiple times to find out if we could decorate the place to maybe have a theme for the party. I had even said I would go in early to set up and decorate but was told it wasn't needed. I mentioned about how K had pointed out a bunch of decorations in the store that he thought were 'cool' but mom still never asked and basically told me to forget about it and that it wasn't important. I had wanted to do decorations so that I at least had some input into the party but was shut down repeatidly. Then I was really pissed off as mom decided that me, her, B and J would go in early to see if anything needed to be done and in the box was a handful of decorations to be put up! Nothing K would have choosen mind you but still. I worked at getting everything out on the table (cake, goodie bags, plates, presents etc) and for it to look nice and I tried to keep it that way and not let mom or dad put non-necessities on that table but it was a hard fought battle!
(End of rant, back to the party)
Mom, K and I went in to town on monday to figure out what we were doing for grab bags (or loot bags as mom kept calling them even though K had no idea what a loot bag was and questioned every time she said it). We were just going to pick up the normal dollar store type of stuff but then mom decided that she would rather get a few actually good toys instead of a bunch of crappy toys. So in the bags ended up - a tech deck, pack of go-go's, bookmart, ipod eraser, aero chocolate bar, tongue tattos, 3 pack of gliders, fruit roll-up, fizz candies, high bounce rubber ball and a small water gun. Since mom and I were working at the book-fair that week, we had to fill the bags up on wednesday to get them all ready to go. Only one small problem was that the gilders didn't fit in the bags so we had to give out a bag and then the package of gliders.
So friday comes along at mom, B, J and I leave a little bit early to go and get things figured out. We get in there and I put out the cake, cupcakes, goodie bags etc on the one table that they have and we got enough tables and chairs that we would need. There is a 'ball room' in there that is a large room with a netted ceiling and one wall that has a soccer / volley ball in it for the kids to play. The kids all played in there until everyone had arrived. The told us they could go in for a game of lazer tag at this point so off the went. However, about ten minutes later we notice that another group is going in to the 'arena'. I was kinda annoyed by this as we had booked a party and shouldn't that mean that our kids all got to go in at once with no one else or other groups in there. Mom and dad just brushed it off but I went out and talked to the guy in charge and told him my thoughts and then he said that he would make sure their second game was just them. The pizza was delivered about half way through their first game so when they got out we had supper (20 slices of pizza for 7 kids and 3 adults) and the kids went to play in the ball room. Some time passed and then the arena was open so our kids went in again and this time no other groups were allowed in thankfully. I asked the guy if I could just get a few pictures of them inside for my scrapbook and he told me to just go ahead in and that I could stay as long as I wanted to get pictures and for me to just watch my step (really dark with ramps and stairs etc).
After the second game the kids came out and we had birthday cake and ice cream, or we offered birthday cake and ice cream, not many kids wanted any of it, they did all down another can of pop though! Once everyone was done and we had cleaned up we called the kids out of the ball room over to do presents. K did pretty good lol, he got an MP3 player (since when is that a kid's birthday party gift?), $25 gift card to Toys R Us, $30 cash, a super soaker and beyblade and a paper jamz guitar. He was a very happy little boy! As there was still about half an hour left of the party we told then they could go back and play in the ball room. N's mom arrived to pick him up as they were heading out to their trailer but we had arranged it so that we would be driving all the kids back to our home town (the lazer tag was about 20minutes from our town). Dad was watching our group in the ball room and another group of boys, slightly older, came in to play as well. After a while dad left and him and mom were taking things to the car. That's when things went bad.
J (remember he is the youngest out of them all) came out of the ball room sobbing and clutching his stomach with B (his older brother ) right behind him. I asked what happened and he tells me that one of the kids in their kicked him in the stomach and that they were being rough. I went right to the opening of the ball toom and yelled 'My kids out NOW'. This is the part that shocked me: as my kids were leaving the room all the others were hooting and hollering about the losers and cry babies and on and on. I got them back to the party room and the others than came to the window (an open spot in the wall with fencing on it to keep the balls in) and started banging on the fencing and calling my boys wimps and how they were losers and it just kept going and then they started saying inappropriate language for a family party center. The shocking part?... There were FOUR adults sitting at the tables watching their group behave like that an not a one said anything!! My parents came back in, saw our kids out of the room getting mad, J just crying at this point and T getting rerady to go in and fight the kids (I had to grab him by his shirt at one point because I was concerned he was going to go and get in to it with these kids!). We very quickly just grabbed the boys, took the goodie bags (we hadn't even gave them out yet!) and walked right out of the place. While in the parking lot our boys were still all hyped up and ticked off so mom, dad and I were trying to get the story out of all of them. Finally we gave out the goodie bags and divided them up between the two cars and headed home.
About half way home B mentioned something about how one kid was annoyed becasue J had broken his glasses. Mom and I just looked at each other and we both knew that if it was one of our kids misbehaving it would be J. So stories start going around and we find out that J and T weren't too innocent in the whole matter. But still, if one of our boys had hurt one of the other boys they would have been pulled out and made to apologize to that boy. Secondly if my kids had of behaved like the others did when I pulled our kids out, they all would have been pulled out of the ball room and made to sit and behave. We would have stepped in and done something, no way we would have let that go like those other parents did!
Any ways, all the kids got into their goodie bags on the way home and we kept hearing "OMG I love tech decks" and "Which tong-too did you get, want to trade?" and "Aero is my favourite" and "I love fruit roll-ups". So we seemed to do a really good job on the goodie bags and Kyler had a great time and that is all that mattered at the end of the day. Not sure I would plan another party there but still the kids had fun so it was a good night.
We invited seven kids to go (to make it an even eight) but one couldn't make it so it was K and his friends - A,C,N & T from his class, B from one grade up and J from one grade down (the just live up the street and are good friends of K's). We booked everything for the 17th and it was real easy as the lazer tag place also offered a package for two games of play, pizza and pop for all of them. That left not that much to do. We went over at the beginning of the week and let him pick out which cake he wanted (He decided on a cake that had ice cream cones cut in half and filled with icing all around the cake and it to be done in green) and mom also got a pack of cupcakes in case the kids didn't like the chocolate cake. Mom picked up some vanilla ice cream, some cotton candy and some 'sprinkle party cake' ice cream to bring along with us as well.
(Moment of honestly here; Beware of ranting and annoyance)
I will admit at this point that I wasn't too happy about this party. When we had his 7.5 party mom complained about it all and said that she was never going to do this again and I was in charge of birthdays. Over the last two years I have asked multiple times (for his 8th, 8.5th and 9th birthdays) and she kept blowing it off. Once my dad decided that he was going to have a birthday everything was set up in the matter of days with no one asking me about it. I didn't find out about it until the date had been booked for the party!! After that, anything I questioned about the party I got snotty remarks about how I can never be pleased and just want everything done my way. I only questioned two things - What kind of pizza and to see if just a plain cheese one could be ordered (it was set up as just pepperoni that was being served) seperatly to be ordered for the party or if we could pick up our own food to be ate there during the party. Well neither of these questions were even asked of the place so K had to have supper before we left for his party because he would not like any of the food there (to me that just seems so wrong!). The second issue is that I asked mom multiple times to find out if we could decorate the place to maybe have a theme for the party. I had even said I would go in early to set up and decorate but was told it wasn't needed. I mentioned about how K had pointed out a bunch of decorations in the store that he thought were 'cool' but mom still never asked and basically told me to forget about it and that it wasn't important. I had wanted to do decorations so that I at least had some input into the party but was shut down repeatidly. Then I was really pissed off as mom decided that me, her, B and J would go in early to see if anything needed to be done and in the box was a handful of decorations to be put up! Nothing K would have choosen mind you but still. I worked at getting everything out on the table (cake, goodie bags, plates, presents etc) and for it to look nice and I tried to keep it that way and not let mom or dad put non-necessities on that table but it was a hard fought battle!
(End of rant, back to the party)
Mom, K and I went in to town on monday to figure out what we were doing for grab bags (or loot bags as mom kept calling them even though K had no idea what a loot bag was and questioned every time she said it). We were just going to pick up the normal dollar store type of stuff but then mom decided that she would rather get a few actually good toys instead of a bunch of crappy toys. So in the bags ended up - a tech deck, pack of go-go's, bookmart, ipod eraser, aero chocolate bar, tongue tattos, 3 pack of gliders, fruit roll-up, fizz candies, high bounce rubber ball and a small water gun. Since mom and I were working at the book-fair that week, we had to fill the bags up on wednesday to get them all ready to go. Only one small problem was that the gilders didn't fit in the bags so we had to give out a bag and then the package of gliders.
So friday comes along at mom, B, J and I leave a little bit early to go and get things figured out. We get in there and I put out the cake, cupcakes, goodie bags etc on the one table that they have and we got enough tables and chairs that we would need. There is a 'ball room' in there that is a large room with a netted ceiling and one wall that has a soccer / volley ball in it for the kids to play. The kids all played in there until everyone had arrived. The told us they could go in for a game of lazer tag at this point so off the went. However, about ten minutes later we notice that another group is going in to the 'arena'. I was kinda annoyed by this as we had booked a party and shouldn't that mean that our kids all got to go in at once with no one else or other groups in there. Mom and dad just brushed it off but I went out and talked to the guy in charge and told him my thoughts and then he said that he would make sure their second game was just them. The pizza was delivered about half way through their first game so when they got out we had supper (20 slices of pizza for 7 kids and 3 adults) and the kids went to play in the ball room. Some time passed and then the arena was open so our kids went in again and this time no other groups were allowed in thankfully. I asked the guy if I could just get a few pictures of them inside for my scrapbook and he told me to just go ahead in and that I could stay as long as I wanted to get pictures and for me to just watch my step (really dark with ramps and stairs etc).
After the second game the kids came out and we had birthday cake and ice cream, or we offered birthday cake and ice cream, not many kids wanted any of it, they did all down another can of pop though! Once everyone was done and we had cleaned up we called the kids out of the ball room over to do presents. K did pretty good lol, he got an MP3 player (since when is that a kid's birthday party gift?), $25 gift card to Toys R Us, $30 cash, a super soaker and beyblade and a paper jamz guitar. He was a very happy little boy! As there was still about half an hour left of the party we told then they could go back and play in the ball room. N's mom arrived to pick him up as they were heading out to their trailer but we had arranged it so that we would be driving all the kids back to our home town (the lazer tag was about 20minutes from our town). Dad was watching our group in the ball room and another group of boys, slightly older, came in to play as well. After a while dad left and him and mom were taking things to the car. That's when things went bad.
J (remember he is the youngest out of them all) came out of the ball room sobbing and clutching his stomach with B (his older brother ) right behind him. I asked what happened and he tells me that one of the kids in their kicked him in the stomach and that they were being rough. I went right to the opening of the ball toom and yelled 'My kids out NOW'. This is the part that shocked me: as my kids were leaving the room all the others were hooting and hollering about the losers and cry babies and on and on. I got them back to the party room and the others than came to the window (an open spot in the wall with fencing on it to keep the balls in) and started banging on the fencing and calling my boys wimps and how they were losers and it just kept going and then they started saying inappropriate language for a family party center. The shocking part?... There were FOUR adults sitting at the tables watching their group behave like that an not a one said anything!! My parents came back in, saw our kids out of the room getting mad, J just crying at this point and T getting rerady to go in and fight the kids (I had to grab him by his shirt at one point because I was concerned he was going to go and get in to it with these kids!). We very quickly just grabbed the boys, took the goodie bags (we hadn't even gave them out yet!) and walked right out of the place. While in the parking lot our boys were still all hyped up and ticked off so mom, dad and I were trying to get the story out of all of them. Finally we gave out the goodie bags and divided them up between the two cars and headed home.
About half way home B mentioned something about how one kid was annoyed becasue J had broken his glasses. Mom and I just looked at each other and we both knew that if it was one of our kids misbehaving it would be J. So stories start going around and we find out that J and T weren't too innocent in the whole matter. But still, if one of our boys had hurt one of the other boys they would have been pulled out and made to apologize to that boy. Secondly if my kids had of behaved like the others did when I pulled our kids out, they all would have been pulled out of the ball room and made to sit and behave. We would have stepped in and done something, no way we would have let that go like those other parents did!
Any ways, all the kids got into their goodie bags on the way home and we kept hearing "OMG I love tech decks" and "Which tong-too did you get, want to trade?" and "Aero is my favourite" and "I love fruit roll-ups". So we seemed to do a really good job on the goodie bags and Kyler had a great time and that is all that mattered at the end of the day. Not sure I would plan another party there but still the kids had fun so it was a good night.
Wednesday, June 15, 2011
So Proud (and breif incident with mom)
So K got his assignment for his big project of the year and it was to build a castle and then be able to tell details about his castle. We got all the supplies for the project and were going to take the weekend to build it. I know that he has trouble staying on task and would need multiple breaks so we figured we would take all of saturday and sunday to work on this. Then mom throws a wrench into the plans stating that brothers' GF and her daughter would be coming out on saturday and brothers GF was thinking of going to watch her mom play baseball while mom watched her daughter (4 year old highly active little girl). I was very upset about this as that would be one massive distraction for K and I knew we would be getting no work done while they were there. Turns out they were running out of clothes and needed to do laundry so mom went in early on saturday to pick up their laundry and worked on it thoughout the day. She did finally admit that she wasn't thinking and that I was 100% right about K and too many distractions while doing the castle.
So between Saturday morning and Sunday evening we made a concentric castle that with working drawbridge and front gate that we were all very proud of. Then came the harder part... writing up a speech for K to give to hsi class!! K has very bad short-term memory because of the issues he has so we knew automatically that there was no way he whould be able to memorize a speech so we were going to have to write one up that he could read to his class. He did really well making it though, I typed while he pointed out all the parts of the castle, what they were for and what he made them out of. It took very little time as he was very comfortable with the material he was talking about. So we printed it off, put in cues as to when he was supposed to point to something and that was that.
Fast forward to Wednesday night when mom and I were working the book fair at his school. His teacher came in and pulled mom aside to tell her that she knew we were very busy (an understatment!!!) but she just had to tell her that K was excellent with his project. She said other classes came into the gym to see all the castles and ask the kids questions and many said that they liked his castle. Then she went around and when she got to him she confessed that she just kept asking questions until she could trip him up.... except she couldnt as he answered every single question perfectly!! She was so proud of him and knew that we would be as well. We don't have a final grade for it yet but just the fact that he was so comfortable with the material and did so well, the grade doesnt really matter. He did more than his best and that is what counts in this family and especially with him!
So between Saturday morning and Sunday evening we made a concentric castle that with working drawbridge and front gate that we were all very proud of. Then came the harder part... writing up a speech for K to give to hsi class!! K has very bad short-term memory because of the issues he has so we knew automatically that there was no way he whould be able to memorize a speech so we were going to have to write one up that he could read to his class. He did really well making it though, I typed while he pointed out all the parts of the castle, what they were for and what he made them out of. It took very little time as he was very comfortable with the material he was talking about. So we printed it off, put in cues as to when he was supposed to point to something and that was that.
Fast forward to Wednesday night when mom and I were working the book fair at his school. His teacher came in and pulled mom aside to tell her that she knew we were very busy (an understatment!!!) but she just had to tell her that K was excellent with his project. She said other classes came into the gym to see all the castles and ask the kids questions and many said that they liked his castle. Then she went around and when she got to him she confessed that she just kept asking questions until she could trip him up.... except she couldnt as he answered every single question perfectly!! She was so proud of him and knew that we would be as well. We don't have a final grade for it yet but just the fact that he was so comfortable with the material and did so well, the grade doesnt really matter. He did more than his best and that is what counts in this family and especially with him!
Monday, June 13, 2011
Internist / Cardiologist Reprt
As mentioned in a prior post, my GP printed out the report that he had got from my internist /cardiologist for me to have for my records. Just in the elevator going down one floor I had already found many mistakes and things that were just blatantly wrong. Here are some of them:
- The dosage of the only medication that she deals with is wrong - states 25mg in AM, 180mg in pm when it is 25mg in AM and 50mg in PM.
- Stated I had a good couple of months without sweating when in reality it was about 3 weeks top.
- In the same paragraph that she is talking about the sweating she mentions that I have noticed hair falling out and swallowing issues. I have told her many times that I do not feel that those issues are related to the sweating issues
- States that 'she is more frustrated then before' and then says "I am really not sure what is happening"
- Mentiones that I have been on the internet 'again' and contacted others and believe I have thyroid issues. States bloodwork was normal and that she really doesnt believe the swallowing issues are from that.
- Says that I deny having any heartburn, acid or food regurgitation (never been asked and I do most definitly have all three of these)
- States that a head and abdomen are normal and that MSK and screening neurological exam are non-contributary. I do not remember said tests being done except for the first visit I saw her.
- Suggests that I should have an assesment with a speech and swallowing pathologist
GP's Doctors Appointment
Well this was the day that I had booked almost a month ago to get in and see my family doctor (Dr. B). I had to really think about what it was that I had actually made this appointment about! However a few main things did happen so I will just focus on what happened:
1) Headaches
I have not been happy as the bad headaches I used to get are coming back. So far they aren't too bad but they are getting worse and I didn't want to leave it for to long. I have been on elavil for these headaches for years and have never had to change the dose which is a rarity for me! The headaches are assumed to be from all the issues going on in my neck but no offical cause has been found. For some reason the elavil stopped them and have kept them in control so that is what matters to me at this point (I have had many brain and neck MRI's to rule out anything serious). I tell my doctor this and he agrees that the dose should be raised but he isn't sure how he wants to do it. He wants to go slowly and work up instead of ending up with a dose that is to high and me becoming a 'zombie' (his words lol). He decided on using 10mg pills and to take one at night on top of what I am already on for a few weeks and if that isn't doing it we will keep adding 10mg's on to it until we reach the level that is needed.
2) Swallowing & Specialist
In the report from my internist / cardiologist it mentioned (among other things, but that is an entire post in and of itself!) that a swallowing test be done to see why I am having problems swallowing. I had talked to the nurse who does the pre-visit check that I wanted to ask about getting the test done as well as a referal to a GI doctor (sepcifically the one that my dad goes to see), so when my doctor mentioned that he wants to get the test done and then he will send me to the specilist that was also mentioned in the report I agreed. I find out later however that she wants me to see a 'speech and swallowing pathologist' and not a GI doctor! So I am going to schedule the test and get it done and over with but am debating on the other doctor. On one hand I want to do everything the internist suggests so it shows I am open to anything but on the other hand I remember that she belives the swallowing issues I am having is because of depression (I don't want to eat because I am depressed so my body makes it hard to swallow - would almost make sense if I wasn't gaining weight like I have been doing lately!). Not too sure what I am going to do with this one.
3) Bloodwork Results
This is the bloodwork that my internist ordered a while back. This was the set that was done by her to basically show me that my thyroid was normal and that while we were testing that we might as well add in a bunch more just for fun. Well, yes, my thyroid is still under '5' but it is getting closer and closer each time (3.9 this time) I get tested for it so I might as well just sit around and wait until it makes it to '5' (if it does, but I think it probably will, just my own health hunch). Shockingly my B12 is finally at a health middle of the range number! I go back and forth with B12 shots and viatmins trying to find the right balance between anemia and toxic values. I started this B-complex vitamin a few months ago and it seems to be keeping me in a nice spot which is definitly nice and a good thing! My MCH is slightly low (it is at 27.4, low starts at 27.5) so I am not concerned about that. However, my C-Reactive Protein is elevated and my ANA is Positive! In the office he basically told me what the tests were and that my 'muscle disease' would account for those values and to not be concerned. That was until I got home and actually looked this stuff up! (There will be a post to follow about more to do with this topic later)
So all in all it was a pretty positive appointment and was able to get not one, but TWO things accomplished which is a definite rarity. Even more so was that my GP printed out the report from my internist / cardiologist and the set of bloodwork values without me even having to ask for them, guess he has finally caught on to me wanting my results in my own files in case I ever need them.
1) Headaches
I have not been happy as the bad headaches I used to get are coming back. So far they aren't too bad but they are getting worse and I didn't want to leave it for to long. I have been on elavil for these headaches for years and have never had to change the dose which is a rarity for me! The headaches are assumed to be from all the issues going on in my neck but no offical cause has been found. For some reason the elavil stopped them and have kept them in control so that is what matters to me at this point (I have had many brain and neck MRI's to rule out anything serious). I tell my doctor this and he agrees that the dose should be raised but he isn't sure how he wants to do it. He wants to go slowly and work up instead of ending up with a dose that is to high and me becoming a 'zombie' (his words lol). He decided on using 10mg pills and to take one at night on top of what I am already on for a few weeks and if that isn't doing it we will keep adding 10mg's on to it until we reach the level that is needed.
2) Swallowing & Specialist
In the report from my internist / cardiologist it mentioned (among other things, but that is an entire post in and of itself!) that a swallowing test be done to see why I am having problems swallowing. I had talked to the nurse who does the pre-visit check that I wanted to ask about getting the test done as well as a referal to a GI doctor (sepcifically the one that my dad goes to see), so when my doctor mentioned that he wants to get the test done and then he will send me to the specilist that was also mentioned in the report I agreed. I find out later however that she wants me to see a 'speech and swallowing pathologist' and not a GI doctor! So I am going to schedule the test and get it done and over with but am debating on the other doctor. On one hand I want to do everything the internist suggests so it shows I am open to anything but on the other hand I remember that she belives the swallowing issues I am having is because of depression (I don't want to eat because I am depressed so my body makes it hard to swallow - would almost make sense if I wasn't gaining weight like I have been doing lately!). Not too sure what I am going to do with this one.
3) Bloodwork Results
This is the bloodwork that my internist ordered a while back. This was the set that was done by her to basically show me that my thyroid was normal and that while we were testing that we might as well add in a bunch more just for fun. Well, yes, my thyroid is still under '5' but it is getting closer and closer each time (3.9 this time) I get tested for it so I might as well just sit around and wait until it makes it to '5' (if it does, but I think it probably will, just my own health hunch). Shockingly my B12 is finally at a health middle of the range number! I go back and forth with B12 shots and viatmins trying to find the right balance between anemia and toxic values. I started this B-complex vitamin a few months ago and it seems to be keeping me in a nice spot which is definitly nice and a good thing! My MCH is slightly low (it is at 27.4, low starts at 27.5) so I am not concerned about that. However, my C-Reactive Protein is elevated and my ANA is Positive! In the office he basically told me what the tests were and that my 'muscle disease' would account for those values and to not be concerned. That was until I got home and actually looked this stuff up! (There will be a post to follow about more to do with this topic later)
So all in all it was a pretty positive appointment and was able to get not one, but TWO things accomplished which is a definite rarity. Even more so was that my GP printed out the report from my internist / cardiologist and the set of bloodwork values without me even having to ask for them, guess he has finally caught on to me wanting my results in my own files in case I ever need them.
Monday, June 6, 2011
My nephew's doctor appointment
Well the actualy doctor's appointment went pretty much as how I expected it in regards to the doctor's news. It went pretty badly though in regards to my parents reactions. Well really it was my dad reaction that bothered me and I have to honestly wonder if their fears about what most likely won't happen is hindering them from actually helping him to succeed in school.
Okay, so basically and to the point he feels that K has 'Inattentive ADHD' (He says that there is no ADD vs ADHD anymore, it's all ADHD even if the kid isn't hyperactive - which K definitly is not!). He strongly suggests medication, and since my mom mentioned before that they were very hesitant about medications, he suggested that the best medication for K would be "vyvanse". He says it is the most non-abusive option of medication and a non-habit forming medication. He feels that K would greatly benefit from medication but also acknowledges that most families prefer to expore more conservative measures first before moving on to medications. He also did say that for the most cases he has seen these may provide results but they never seem to last for the long term. He also made sure that we knew that even if we decide to not go the medication route, he is still there if we run into problems or need his help with anything.
My parents, especially my dad, are completly anti-medication in regards to K. It does really really bother me becasue of the status of my own medications. My parents feel that since K's father and mother are both drug addicts, that K has a higher chance of becoming one as well. This is true, I don't argue that point, however both the mother and father started drugs by basicaly self-medication. His dad most likely had ADHD (and possible other mental health issues) and his mother has either schizophrenia or borderline personality disorder. And it is a well known fact that a lot of people with ADHD that go untreated turn to drugs in their teen, or later, years.
Okay so now for what my parents, well my dad, majorly disliked about the appointment (and my thoughts on it:
Okay, so basically and to the point he feels that K has 'Inattentive ADHD' (He says that there is no ADD vs ADHD anymore, it's all ADHD even if the kid isn't hyperactive - which K definitly is not!). He strongly suggests medication, and since my mom mentioned before that they were very hesitant about medications, he suggested that the best medication for K would be "vyvanse". He says it is the most non-abusive option of medication and a non-habit forming medication. He feels that K would greatly benefit from medication but also acknowledges that most families prefer to expore more conservative measures first before moving on to medications. He also did say that for the most cases he has seen these may provide results but they never seem to last for the long term. He also made sure that we knew that even if we decide to not go the medication route, he is still there if we run into problems or need his help with anything.
My parents, especially my dad, are completly anti-medication in regards to K. It does really really bother me becasue of the status of my own medications. My parents feel that since K's father and mother are both drug addicts, that K has a higher chance of becoming one as well. This is true, I don't argue that point, however both the mother and father started drugs by basicaly self-medication. His dad most likely had ADHD (and possible other mental health issues) and his mother has either schizophrenia or borderline personality disorder. And it is a well known fact that a lot of people with ADHD that go untreated turn to drugs in their teen, or later, years.
Okay so now for what my parents, well my dad, majorly disliked about the appointment (and my thoughts on it:
- The doctor would not shake hands. Dad offered him his hand and the doctor apologized and said that he didn't shake hands as a practice with being a peditrician. (Maybe this guy is OCD or a germaphobe, I am sure it is not just my dad's hand that he doesnt shake!)
- Four forms were filled out (done by: dad, mom & I, his teacher and the resource teacher), he commented that 3 of the forms were basically the same but the fourth showed some inconsistancies that he wanted to ask about. Of course that fourth sheet was the one that dad filled out and he felt that he was being called out (Of course dad's would be different, he doesnt deal with schoolwork at all and just does enjoyable activities with him, the doctor was just asking how his perception was different than ours)
- He didn't like the analogies that the doctor kept using and felt that he was being talked down to by the doctor (He's used to kids so uses basic analagies all the time, he was just trying to make sure his point got across clearly)
Friday, June 3, 2011
Long day.... (and health update)
I was up around 9:30 this morning (very early for me) so that mom and I could attend an assembly at K's school. Because I help with the bookfair three times a year and mom does that as well as having kids read to her once a week, we were invited to a 'thank-you' gathering at his school. We got to see some of the year end 'awards' handed out and then all of the volunteer's got a nice yellow carnation, a small box of Laura Secord Chocolates (only two, haven't tried them yet) and a thank-you card from one of the students. We then headed to the library were there was a nice fruit tray and cheese tray as well as some drinks for us to eat. We got things figured out for the book fair next week and left there around 11:30.
Mom and I then headed into town to do some shopping. Well, correction, a LOT of shopping! Got a lot of great deals though! Only went to four stores but it felt a lot longer! We went to:
So, guess I should give a breif 'health' update as I haven't posted for a while. I saw my GP on monday and was relieved that the 'appointment' went more smoothly than I could have imagined! My rheumy does all my pain medications and the ones I was on currently needed switching to the next one (we rotate my breathrough and long-acting pain meds when they start becoming ineffective so I don't build up a huge tolerance to them). Well I didn't know if my GP would switch them or not but he did with no questions asked. So I switched my breakthrough meds on monday and my long-acting ones on thursday and have been doing pretty good with them.
My knee hasn't seemed to be doing well lately for some reason. I am back up to being swollen, unable to cross my legs on that side and having to prop it up in bed. The entire lateral side of the leg is very sore and tender. I really hope my rheumy gets back soon as I need some answers and / or something that can be done to relieve some of the pain!
What has been the worse however is the horribly painfull neuropathic pain in my right shoulder. It feels like it is burning 24/7 and even wearing a baggy t-shirt is not comfortable. I am on a medication for this that my rheumy has told me I can play around with so I have started taking it twice a day now instead of just once a day. Hoping that it kicks in soon though as this is exrutiatingly painfull. It has left me in tears most nights because there just isn't anything I can do to help it and just have to wait and see if the more frequent dose will help.
Major dislike - we were coming home from K's karate (he is already up to his advanced blue belt :D - just had to be the proud auntie for a minute there lol) last night and as there are a lot of large transport trucks around here and we get lots of snow, we have many potholes and very bumpy roads. We got about 10 minutes away from the house and I got a headache, 5 minutes out it was nausea and when we got home it was the full headache, neck pain and stiffness, nausea, cold sweats and dizzyness. I haven't had an 'attack' like this in a very long time. Took a few gravol and ended up laying on the couch for the rest of the night. When I got into bed and lying down properly I started experiencing vertigo if I rolled over on the bed. No problems like that standing up, just when laying down. Today I have been really off balance and have had to grab the shoppnig cart or whatever was around to stop from falling down. Really hoping all that fun stuff isn't starting to come back! I started taking a medication for it years ago and it has worked great ever since, haven't felt this affected by it in a very long time, thankfully though the duration of this 'attack' was a LOT shorter than the ones I used to get!
Well all that stuff being done today plus all the not feeling good means I will end it here as I am going to go crawl in my nice warm waterbed and hopefully get some sleep!
Mom and I then headed into town to do some shopping. Well, correction, a LOT of shopping! Got a lot of great deals though! Only went to four stores but it felt a lot longer! We went to:
- Zellers - got a shirt on sale 50% off, a DS game for $10, two books that were $3 each and a CD for $1. (Mom picked up quite a few good deals including the U-build Sorry game and a travel edition of Battleship for us to take up to the cottage with us in July so he has something 'new' to play)
- Sears as my friend is registered there for her wedding (had to order the gift though as they had none in store) and I got a great deal there!! (Skirt - normally $35 on for $15, capri's - normally $30 for $19)
- Pennington's - 2 pairs of shorts and a shirt that was 50% off (Mom got two pairs of shorts too, going to have to write our names in them though as we are the same size and there are only two colours!)
- Walmart where I just got Shaggy some bones and dog food (even that was on sale! normaly $10 got it for $7) and got one of the X-men movies for K and I to watch - normally $15 and I got it for $5
So, guess I should give a breif 'health' update as I haven't posted for a while. I saw my GP on monday and was relieved that the 'appointment' went more smoothly than I could have imagined! My rheumy does all my pain medications and the ones I was on currently needed switching to the next one (we rotate my breathrough and long-acting pain meds when they start becoming ineffective so I don't build up a huge tolerance to them). Well I didn't know if my GP would switch them or not but he did with no questions asked. So I switched my breakthrough meds on monday and my long-acting ones on thursday and have been doing pretty good with them.
My knee hasn't seemed to be doing well lately for some reason. I am back up to being swollen, unable to cross my legs on that side and having to prop it up in bed. The entire lateral side of the leg is very sore and tender. I really hope my rheumy gets back soon as I need some answers and / or something that can be done to relieve some of the pain!
What has been the worse however is the horribly painfull neuropathic pain in my right shoulder. It feels like it is burning 24/7 and even wearing a baggy t-shirt is not comfortable. I am on a medication for this that my rheumy has told me I can play around with so I have started taking it twice a day now instead of just once a day. Hoping that it kicks in soon though as this is exrutiatingly painfull. It has left me in tears most nights because there just isn't anything I can do to help it and just have to wait and see if the more frequent dose will help.
Major dislike - we were coming home from K's karate (he is already up to his advanced blue belt :D - just had to be the proud auntie for a minute there lol) last night and as there are a lot of large transport trucks around here and we get lots of snow, we have many potholes and very bumpy roads. We got about 10 minutes away from the house and I got a headache, 5 minutes out it was nausea and when we got home it was the full headache, neck pain and stiffness, nausea, cold sweats and dizzyness. I haven't had an 'attack' like this in a very long time. Took a few gravol and ended up laying on the couch for the rest of the night. When I got into bed and lying down properly I started experiencing vertigo if I rolled over on the bed. No problems like that standing up, just when laying down. Today I have been really off balance and have had to grab the shoppnig cart or whatever was around to stop from falling down. Really hoping all that fun stuff isn't starting to come back! I started taking a medication for it years ago and it has worked great ever since, haven't felt this affected by it in a very long time, thankfully though the duration of this 'attack' was a LOT shorter than the ones I used to get!
Well all that stuff being done today plus all the not feeling good means I will end it here as I am going to go crawl in my nice warm waterbed and hopefully get some sleep!
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