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.
Friday, June 24, 2011
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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