I am going to do a blog roll of other EDSer blogs but just not sure where I want it placed.
I am thinking of either down the left side or create a seperate 'page' for it so it's in the tabs at the top.
If anyone has suggestions or comments in general about the layour or colours let me know!
Monday, February 28, 2011
Got a date!
I got a letter in the mail yesterday (well it was picked up yesterday) from the clinic that I go to for my knee. I jokingly asked if people wanted to take bets on what month my appointment would be in. I opened it up and was pretty shocked, the appointment date is...... May 11th. Brother and his GF were here at the time and remarked that it was a long wait to get in but for the quality of care at that clinic I don't mind the wait at all! I would rather wait a few months and get top-notch quality of care than play russion roulette at getting a doctor to treat me quicker! It will make the next few months quite busy though!! Mom has been joking that all we do is go to dr's appointments, which this february and march seem like it!
For March:
1st - Family Doctor to get okayed for surgery
1st - Pre-op appointment to get okayed for and ready for surgery
3rd - Appt with Rheumy - deciding about asking him about something (more on that later) but just routine
9th - Dental Surgery
??? - Follow up appointment for dental surgery
22nd - Current OS appointment at the clinic to go over CT Scan
Sometime in March or early April I also need to get to my internist to talk to her about a few different options. I think one of my autonomic dysfunction meds needs to be changed but we arent 100% sure which one (and what makes it even harder is she handles one of the meds and my GP handles another). Plus want to ask her about the thing I am wondering about (more on that later). I have to go get ready for a meeting at K's school.
For March:
1st - Family Doctor to get okayed for surgery
1st - Pre-op appointment to get okayed for and ready for surgery
3rd - Appt with Rheumy - deciding about asking him about something (more on that later) but just routine
9th - Dental Surgery
??? - Follow up appointment for dental surgery
22nd - Current OS appointment at the clinic to go over CT Scan
Sometime in March or early April I also need to get to my internist to talk to her about a few different options. I think one of my autonomic dysfunction meds needs to be changed but we arent 100% sure which one (and what makes it even harder is she handles one of the meds and my GP handles another). Plus want to ask her about the thing I am wondering about (more on that later). I have to go get ready for a meeting at K's school.
Friday, February 25, 2011
Kinda ticked off
This isn't really important but it is bugging me so I figure a good vent should get it out of my system so I can move on from it. I have already wrote that my dad is not in favour of me having more surgery on my knee (we don't even know if it will be suggested yet) and really wants me to go the bracing and physio route. He had the OS at the clinic write me up a perscription for one and had me go right then and there to their small orthopedic store to try some on. Here is where the annoyance comes in:
Before even entering the store I told my dad that I didn't think it would be covered through ODSP as I would have to submit a claim first and then see if and what would be covered. We went in and the first brace was horrible. When I said this my dad's face just dropped as if I had told him the most disappointing news in the world. It was and felt horrible! The second brace didn't feel to bad and I walked around and tried it on and when I said it wasn't too bad and that it might help dad perked up big time. I took it off and went to get changed. When I come back into the store I find that my dad has bought it and when I made mention of this fact he said "Don't worry about it, it's worth it if it might help".
On the way home I come to find out (while going through the stack of papers that we left with) that the brace that was bought cost $120!! Now if I had of known that fact I would never have agreed to it. First off that amount is just ridiculus and I could have gone online to get it cheaper. Second I have very very little faith that it will help and fear it is just going to do more harm to my knee. Third I just can't afford that! We get home and I have worn it around a few times and it hurts like hell. I should have known better I guess and not even tried that route as I knew the likelyhood of it helping was very small. What really pisses me off is when mom asks if I have put it through ODSP yet as dad was getting low on money so mom paid him back for the brace and wanted to know when I would find out and be able to pay her back! I was just stunned! So the other day I got in touch with my caseworker as I had a pile of questions to ask her and I asked about the brace and she said that nothing could be done about it because I didn't submit to a pre-approval type of thing and that I paid out of pocket right up front for it. So I tell mom this and she tells me not to worry and that I can pay her back just small amounts at a time (plus I owe her half of the $120 vet visit from when she stepped on and hurt my dog which I am also not too pleased about).
So to sum it up:
Before even entering the store I told my dad that I didn't think it would be covered through ODSP as I would have to submit a claim first and then see if and what would be covered. We went in and the first brace was horrible. When I said this my dad's face just dropped as if I had told him the most disappointing news in the world. It was and felt horrible! The second brace didn't feel to bad and I walked around and tried it on and when I said it wasn't too bad and that it might help dad perked up big time. I took it off and went to get changed. When I come back into the store I find that my dad has bought it and when I made mention of this fact he said "Don't worry about it, it's worth it if it might help".
On the way home I come to find out (while going through the stack of papers that we left with) that the brace that was bought cost $120!! Now if I had of known that fact I would never have agreed to it. First off that amount is just ridiculus and I could have gone online to get it cheaper. Second I have very very little faith that it will help and fear it is just going to do more harm to my knee. Third I just can't afford that! We get home and I have worn it around a few times and it hurts like hell. I should have known better I guess and not even tried that route as I knew the likelyhood of it helping was very small. What really pisses me off is when mom asks if I have put it through ODSP yet as dad was getting low on money so mom paid him back for the brace and wanted to know when I would find out and be able to pay her back! I was just stunned! So the other day I got in touch with my caseworker as I had a pile of questions to ask her and I asked about the brace and she said that nothing could be done about it because I didn't submit to a pre-approval type of thing and that I paid out of pocket right up front for it. So I tell mom this and she tells me not to worry and that I can pay her back just small amounts at a time (plus I owe her half of the $120 vet visit from when she stepped on and hurt my dog which I am also not too pleased about).
So to sum it up:
- I only got the stupid thing because my dad wanted me to try it
- Even the doctor (not the fellow, the dr) told us that it was something that we could try but would not be a long term solution
- I told him that I was pretty sure that you had to submit an estimate first before ODSP would cover it
- Dad didn't even tell me the price and let me make a decision
- Dad bought the brace while I was not even in the room so I have no clue about if there is anything like a return policy or the like
- When I asked about him getting it I was told 'Don't worry about it' which lead me to assume he knew I was short on money and could not afford a brace like that and that he was going to buy it for me
- I hate that brace so much as it hurts so bad and makes things hurt so much worse
- When I asked dad if they had a return policy he says he doesn't know and 'isn't the brace helping?'! Hello have you seen my wear it? When I do the pain is horrible and I am laid up all night so I barely wear it.
Sunday, February 20, 2011
Knee CT Scan
Okay, I will now write about what actually happened. Knee is still sore but I manged to get a few decent hours of sleep.
Dad and I left the house at 7:30, stopped at Timmy's and then headed off. We took the highway this time as dad wanted to give the truck a 'good run'. We got to the hospital around 9 and headed in. We almost missed the place where we were supposed to go first as we entered the hospital through a 'staff only' entrance. We found the registration, they made me up a blue card (they hospital and clinic uses other cards for easier access to files) and told us where to go. We though we were going the right way but then ended up seeing the ER and figured it wasn't right so we backtracked. We got to the CT area around 9:10 and I had just sat down and a lady came out to get me. Dad waited in the waiting area and I went back.
The best news? No contrast! So no injections or IV's. I was so relieved when I realized that. The bad news? It hurt a lot! She took the following views:
1) Both legs straight out (realized that it hurts a lot to put my bad knee straight)
2) Both legs bent slightly (less than 45 degrees)
3) Both legs with my toes pointed and thigh muscles constricted
4) Multiple views of my bad leg twisted many different ways to get images of where the knee cap sits (other leg out of shot)
5) Image of my left leg straight out while my right leg was up in the air
6) Image of my right leg straight out while my left leg was up in the air
Those are the basic ones. #4 hurt a lot but was also interesting. In order for her to get a picture straight on of my kneecap, I had to have my foot pointing outwards laterally. I guess that shows so pretty messed up tracking right there. And that was it. I was in and out in around 20 minutes!
We got back to the truck and I instantly took a dose of painkillers and advil and we were off again. We stopped at Timmy's just on the outskirts of town so we could both use the bathroom and then we headed off. About halfway home I started to feel really really bad. I got all clammy, felt lightheaded, nauseaus, headache and just so wrong. When we were about 20 minutes away dad asked if I wanted to get out and maybe stretching my leg might help but I just wanted to get home. I reclined the seat and just closed my eyes until we got home.
We get home and I still feel just weird. I felt wired like I couldn't sleep and kept trying to talk to mom but she kept thinking I was done and leaving. I go upstairs and mom takes one look at me and tells me to go to bed. I was white as a ghost, sweating badly and just 'jittery'. It was like my POTS when nuts and didn't know what to do with my body. I came down to bed but couldn't sleep so I played on my DS for a bit and then finally was able to get a few hours of sleep. I got up as my parents were going out and K and I just got some pizza and sat on the couch in our jammies and watched 4 hours of 'The Simpsons' (he loves the show, mom hates it so he only gets to really watch it with me so it makes it a nice treat for him.) and chowed down on chocolate lol. After they got home mom and I watched an episode of 'Buffy The Vampire Slayer' (I bought all the seasons in the fall for us to watch) and then I came down to bed. I checked my email, wrote a small post on here and then headed for bed. Didn't wake up until shortly after noon today. Still feeling a bit 'off', still having sweating episodes and still in a lot of pain. But they are done and I go back to the clinic on March 22nd to find out the results.
Dad and I left the house at 7:30, stopped at Timmy's and then headed off. We took the highway this time as dad wanted to give the truck a 'good run'. We got to the hospital around 9 and headed in. We almost missed the place where we were supposed to go first as we entered the hospital through a 'staff only' entrance. We found the registration, they made me up a blue card (they hospital and clinic uses other cards for easier access to files) and told us where to go. We though we were going the right way but then ended up seeing the ER and figured it wasn't right so we backtracked. We got to the CT area around 9:10 and I had just sat down and a lady came out to get me. Dad waited in the waiting area and I went back.
The best news? No contrast! So no injections or IV's. I was so relieved when I realized that. The bad news? It hurt a lot! She took the following views:
1) Both legs straight out (realized that it hurts a lot to put my bad knee straight)
2) Both legs bent slightly (less than 45 degrees)
3) Both legs with my toes pointed and thigh muscles constricted
4) Multiple views of my bad leg twisted many different ways to get images of where the knee cap sits (other leg out of shot)
5) Image of my left leg straight out while my right leg was up in the air
6) Image of my right leg straight out while my left leg was up in the air
Those are the basic ones. #4 hurt a lot but was also interesting. In order for her to get a picture straight on of my kneecap, I had to have my foot pointing outwards laterally. I guess that shows so pretty messed up tracking right there. And that was it. I was in and out in around 20 minutes!
We got back to the truck and I instantly took a dose of painkillers and advil and we were off again. We stopped at Timmy's just on the outskirts of town so we could both use the bathroom and then we headed off. About halfway home I started to feel really really bad. I got all clammy, felt lightheaded, nauseaus, headache and just so wrong. When we were about 20 minutes away dad asked if I wanted to get out and maybe stretching my leg might help but I just wanted to get home. I reclined the seat and just closed my eyes until we got home.
We get home and I still feel just weird. I felt wired like I couldn't sleep and kept trying to talk to mom but she kept thinking I was done and leaving. I go upstairs and mom takes one look at me and tells me to go to bed. I was white as a ghost, sweating badly and just 'jittery'. It was like my POTS when nuts and didn't know what to do with my body. I came down to bed but couldn't sleep so I played on my DS for a bit and then finally was able to get a few hours of sleep. I got up as my parents were going out and K and I just got some pizza and sat on the couch in our jammies and watched 4 hours of 'The Simpsons' (he loves the show, mom hates it so he only gets to really watch it with me so it makes it a nice treat for him.) and chowed down on chocolate lol. After they got home mom and I watched an episode of 'Buffy The Vampire Slayer' (I bought all the seasons in the fall for us to watch) and then I came down to bed. I checked my email, wrote a small post on here and then headed for bed. Didn't wake up until shortly after noon today. Still feeling a bit 'off', still having sweating episodes and still in a lot of pain. But they are done and I go back to the clinic on March 22nd to find out the results.
Saturday, February 19, 2011
Knee CT Scan
Well we survived the trip to get the CT Scan and back. Thankfully no contrast was used but a lot of knee and leg manipulation went on. Slept most of this afternoon, 'babysat' K tonight and now going back to bed. Pain levels are so high that I just want to take my next dose of breakthrough pain killer and get to sleep before it wears off. Will try to post more tomorrow.
Friday, February 18, 2011
Anesthesiest Consult and Knee Date
First off, I went to see the anesthesiologist (I have no clue whatsoever as how to spell that!) and everything went fine. Made sure to remind him of the no locals and that was about it. I have seen this guy before and he remembered the EDS part of my care which was nice. He said that there should be no problems and it should go just as smoothly as the last one. I asked if there was anything I could do to get a good vein for that day (heat pads, water etc) but he said nothing could really be done and then asked where my good vein was (I told him, it's on my hand) and he says just make sure to tell them where your best vein is and not let them tell you otherwise (which I learned a long time ago with IV's).
Secondly yesterday I had three pretty nerve wracking calls all within about 15 minutes of each other.
Call # 1 (Knee Clinic -> Me)
I get on the phone and she tells me that they have a date for my Dynamic CT Scan. I ask her to wait a minute until I get upstairs near the calendar then ask for the date. It is for this sunday. The 20th. The Daytona 500. Dad's one and only date that he has a bunch of guys over to watch this race. Not only that but the time they give me is for 1pm. The race starts at noon. It takes 1 hour to get there and 1 hour to get back. All of our hearts just drop. I ask if that was a cancellation date or if I rescheduled how soon it would be. She told me to call the imaging department and ask when there next date would be but to not say you need to reschedule until you know when the next date would be. And then call the clinic back to make a follow-up about 10 days from the scan.
Call #2 (Me -> Hospital)
I get through to the imaging depatrtment and say that I was just called with a date that wasn't going to work. They knew my name before I even told them lol. I told them that as we were so far away that we couldn't rearrange things to get there. She said that was fine and asked me if saturday would be better. I thought she meant if a saturday date would be better but no, she was asking if this saturday, Feb 19th would work. I looked at my dad and he nodded (glad that it wouldnt be on sunday lol) and she gave me a choice of 9ish or 2ish. Well tomorrow (saturday) night they have plans to go out to supper with a bunch of friends so he wanted the 9ish appointment (when my parents are doing the driving they get to pick the times, I would have prefered the later one). So we get that all planned out and find out where I should be going.
Call #3 (Me ->Knee Clinic)
I call them back and get to a scheduling secretary to make a follow-up appointment with Dr. F. She tells me that Dr. F is out of the office next week so she had to check. Well that is when my heart dropped into my stomach as the first two weeks of March I already have 2 doctor's appointments and dental surgery! Anesthetics and me don't get along too well and it takes me a lot longer to recover from it than the surgery I will be having. Then the next week is March Break and I am hoping to be able to do some stuff with K. She comes back on and asks if the 22nd of March will be okay and I gladly took that date! Ironically, 9 years prior to that date I was at the hospital attached to the clinic for my knee scope.
So that's about it. This mornings appointment went well, have to get a good nights sleep to get up really early (probably leave here no later than 7:45ish) and see what this test consists of. I googled the name and haven't found anything. Apparently it's a "Dynamic CT scan" to see what the inside of my knee is doing when I bend it and to really see the tracking of the knee cap. I have no clue about contrast and that is what is bothering me right now. I have put up a message on facebook to see if anyone knows (BTW please no one mention this blog on facebook as I want this to be non-family seeing it, it's my place to vent and I would feel I had to censor myself if family was reading this!)
Secondly yesterday I had three pretty nerve wracking calls all within about 15 minutes of each other.
Call # 1 (Knee Clinic -> Me)
I get on the phone and she tells me that they have a date for my Dynamic CT Scan. I ask her to wait a minute until I get upstairs near the calendar then ask for the date. It is for this sunday. The 20th. The Daytona 500. Dad's one and only date that he has a bunch of guys over to watch this race. Not only that but the time they give me is for 1pm. The race starts at noon. It takes 1 hour to get there and 1 hour to get back. All of our hearts just drop. I ask if that was a cancellation date or if I rescheduled how soon it would be. She told me to call the imaging department and ask when there next date would be but to not say you need to reschedule until you know when the next date would be. And then call the clinic back to make a follow-up about 10 days from the scan.
Call #2 (Me -> Hospital)
I get through to the imaging depatrtment and say that I was just called with a date that wasn't going to work. They knew my name before I even told them lol. I told them that as we were so far away that we couldn't rearrange things to get there. She said that was fine and asked me if saturday would be better. I thought she meant if a saturday date would be better but no, she was asking if this saturday, Feb 19th would work. I looked at my dad and he nodded (glad that it wouldnt be on sunday lol) and she gave me a choice of 9ish or 2ish. Well tomorrow (saturday) night they have plans to go out to supper with a bunch of friends so he wanted the 9ish appointment (when my parents are doing the driving they get to pick the times, I would have prefered the later one). So we get that all planned out and find out where I should be going.
Call #3 (Me ->Knee Clinic)
I call them back and get to a scheduling secretary to make a follow-up appointment with Dr. F. She tells me that Dr. F is out of the office next week so she had to check. Well that is when my heart dropped into my stomach as the first two weeks of March I already have 2 doctor's appointments and dental surgery! Anesthetics and me don't get along too well and it takes me a lot longer to recover from it than the surgery I will be having. Then the next week is March Break and I am hoping to be able to do some stuff with K. She comes back on and asks if the 22nd of March will be okay and I gladly took that date! Ironically, 9 years prior to that date I was at the hospital attached to the clinic for my knee scope.
So that's about it. This mornings appointment went well, have to get a good nights sleep to get up really early (probably leave here no later than 7:45ish) and see what this test consists of. I googled the name and haven't found anything. Apparently it's a "Dynamic CT scan" to see what the inside of my knee is doing when I bend it and to really see the tracking of the knee cap. I have no clue about contrast and that is what is bothering me right now. I have put up a message on facebook to see if anyone knows (BTW please no one mention this blog on facebook as I want this to be non-family seeing it, it's my place to vent and I would feel I had to censor myself if family was reading this!)
Wednesday, February 16, 2011
Stupidity + Stuborness = Bad Night!
As I still can not drive I can only get into town when my mom is wanting to go. Well we went in today to pick up a few things and check out the cheap valentines stuff on sale ;). First off we realized that my crutch was in the truck and not the van so we had to go in to the house dad was at (helping a friend doing some renovations) to get the crutch. We then had to figure out our 'game plan'
First stop - Walmart: We got there and I didn't take my crutch as I figured I would just push the cart. Well we did our rounds, I got the few things that I needed and then saw a nice storage ottoman that seemed to be very similar in colour to my couch (or they had black) and I went back and forth about whether I wanted to get it or not. See I payed off the last of my credit line this month by putting on three times the amount I usually do so was concerned about running short at the end of the month. Mom then says that she will get a cheque on friday so if I needed she could lend me some then so we figured that it was such a deal that we went in and got the ottoman. It's nice, a bit darker in colour than the couch and has a nice size compartment to put things in and was on sale for $20 instead of $30.
Second Stop - Bulk Barn: I just had to run in and get some rawhides for the dogs so mom dropped me off right at the door and I went in without my crutch but got in and out pretty quickly.
Third Stop - Harvey's: We got there and I figured I didn't need my crutch here either as we were just going in to eat. However, I didn't do too much eating as I was tired, in pain and having issues swollowing food.
Fourth Stop - Shoppers: The had nothing in the way of valenties sales so we left and headed to the other Shoppers store. There I got one box of 1/2 off Lindt chocolate as well as some normal chocolate as it was on sale and a few other small items.
Fifth Stop - Food Basics: I took my crutch into this store as I was getting tired and there were no real close spots. We needed to get some more of my flavoured water and thought that it was a presidents choice store but it wasn't (I get presidents choice flavoured water that are 0 calories and sweetened with sucralose and not aspertame - which gives me instant migraines. Unfortunatly the last batch we got at our local store tasted off so we were hoping to get more bottles that didn't have the expirey date the bad batch had.
Sixth Stop - Back in Corunna, Shoppers: Went in because I saw a really pretty like black iron-y butterfly that I had thought would look good above my couch originally. Then I had a different idea that mom and I think will look very very cool so I wanted to double check that one at shoppers to see if it could go somewhere else but it will be too big anywhere else.
Seventh Stop - No Frills: I took my crutch into this store as well because my leg was getting really sore and tired feeling. Did some basic shopping done just in time to get to the school to get K.
Now my leg is just killing me! The pain is all around my knee, front /back, lateral / medial /, top/bottom etc. I am also getting stabbing pain on the lower medial side of my knee and real 'achey' (doesn't seem like a strong enough word for the feeling) all the way from the knee and half way up the thigh on the lateral side. I have iced it, taken a few doses of pain meds, took some advil but it is still very sore. Apparently next time I should use the crutch everywhere so I don't stretch or hurt anything :S
First stop - Walmart: We got there and I didn't take my crutch as I figured I would just push the cart. Well we did our rounds, I got the few things that I needed and then saw a nice storage ottoman that seemed to be very similar in colour to my couch (or they had black) and I went back and forth about whether I wanted to get it or not. See I payed off the last of my credit line this month by putting on three times the amount I usually do so was concerned about running short at the end of the month. Mom then says that she will get a cheque on friday so if I needed she could lend me some then so we figured that it was such a deal that we went in and got the ottoman. It's nice, a bit darker in colour than the couch and has a nice size compartment to put things in and was on sale for $20 instead of $30.
Second Stop - Bulk Barn: I just had to run in and get some rawhides for the dogs so mom dropped me off right at the door and I went in without my crutch but got in and out pretty quickly.
Third Stop - Harvey's: We got there and I figured I didn't need my crutch here either as we were just going in to eat. However, I didn't do too much eating as I was tired, in pain and having issues swollowing food.
Fourth Stop - Shoppers: The had nothing in the way of valenties sales so we left and headed to the other Shoppers store. There I got one box of 1/2 off Lindt chocolate as well as some normal chocolate as it was on sale and a few other small items.
Fifth Stop - Food Basics: I took my crutch into this store as I was getting tired and there were no real close spots. We needed to get some more of my flavoured water and thought that it was a presidents choice store but it wasn't (I get presidents choice flavoured water that are 0 calories and sweetened with sucralose and not aspertame - which gives me instant migraines. Unfortunatly the last batch we got at our local store tasted off so we were hoping to get more bottles that didn't have the expirey date the bad batch had.
Sixth Stop - Back in Corunna, Shoppers: Went in because I saw a really pretty like black iron-y butterfly that I had thought would look good above my couch originally. Then I had a different idea that mom and I think will look very very cool so I wanted to double check that one at shoppers to see if it could go somewhere else but it will be too big anywhere else.
Seventh Stop - No Frills: I took my crutch into this store as well because my leg was getting really sore and tired feeling. Did some basic shopping done just in time to get to the school to get K.
Now my leg is just killing me! The pain is all around my knee, front /back, lateral / medial /, top/bottom etc. I am also getting stabbing pain on the lower medial side of my knee and real 'achey' (doesn't seem like a strong enough word for the feeling) all the way from the knee and half way up the thigh on the lateral side. I have iced it, taken a few doses of pain meds, took some advil but it is still very sore. Apparently next time I should use the crutch everywhere so I don't stretch or hurt anything :S
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