I got my letter from Social Security with their decision. I was approved. I know some areas take ages to process claims so I guess I live in an area that doesn't have a bad backlog since I only applied at the end of Dec. I think having gone to Mayo Clinic for my diagnosis & the fact the geneticist there stated flat out it will never get better & will only go down hill helped me get approved.
What I am glad for (apart from being able to pay my bills now, lol) is that when I have a good day that energy doesn't have to be sucked up by a job so that I have none left for Toad. That was really hard for me, I would work a 3 hour shift & then spend the rest of the day either just flopped on the sofa or napping on it & she would have the tv on. Now we are able to sit & read together or play together. On Wed after pre-school we were able to stop at the fast-food joint & have lunch together & I realized it's the 1st time just the 2 of us have ever eaten somewhere together. I'm glad this means my daughter gets a mom rather than a woman who can't do anything with her, I can't do a lot, but at least now I can do some stuff.
Showing posts with label Toad. Show all posts
Showing posts with label Toad. Show all posts
24 April 2009
08 March 2009
I guess...
I'm still quiet because I don't have much to say, lol.
Hmm, let's see. Amelia has been back in school thanks to us getting a carpool thing going. We've got it set up to go til the end of March, by then it should be warm enough that we can walk. She's still loving pre-school. Her parent/teacher conference is coming up in another week, I know I'll hear all about how she doesn't use scissors well & her pencil grip is incorrect. With the utmost respect I say "Bite me.", really she may never do them correctly, I don't. Also I have noticed a few things over the years that have got me wondering if she has development disorder, ASD or ADHD, something in there. If she does it's pretty mild, but there are quirks to her behavior that make me pause, & there are quite a few of them. Overall she's fine, but I am thinking of having her evaluated to see if she does have something so we can get a plan to cope set up. Thankfully where I live evaluations are free. I'll be doing this come summer.
I am the same as ever. I decided not to see the ortho about knee surgery. I don't have enough of a support system going to have the help I would need while I recover. I'm going to ask for a knee brace instead. I am still tapering down on the gabapentin & it's going well, I'm just yesterday down to 300-300-600. I am dropping things more, but I'll adapt & deal with it.
I am still knitting & getting better. I've done a scarf, washcloth, a toy hat, some pins & am working on another scarf & going to try my hand at a sock soon. I think it's helping to keep my hand strength while I reduce the gabapentin.
I got my tax $ & bought a nice pair of shoes since I've given up on orthotics. I've gotten 2 of them so far & they suck. They drive me nuts & I can't see any benefit when I use them. So I decided quality footwear is what I need.
Hmm, let's see. Amelia has been back in school thanks to us getting a carpool thing going. We've got it set up to go til the end of March, by then it should be warm enough that we can walk. She's still loving pre-school. Her parent/teacher conference is coming up in another week, I know I'll hear all about how she doesn't use scissors well & her pencil grip is incorrect. With the utmost respect I say "Bite me.", really she may never do them correctly, I don't. Also I have noticed a few things over the years that have got me wondering if she has development disorder, ASD or ADHD, something in there. If she does it's pretty mild, but there are quirks to her behavior that make me pause, & there are quite a few of them. Overall she's fine, but I am thinking of having her evaluated to see if she does have something so we can get a plan to cope set up. Thankfully where I live evaluations are free. I'll be doing this come summer.
I am the same as ever. I decided not to see the ortho about knee surgery. I don't have enough of a support system going to have the help I would need while I recover. I'm going to ask for a knee brace instead. I am still tapering down on the gabapentin & it's going well, I'm just yesterday down to 300-300-600. I am dropping things more, but I'll adapt & deal with it.
I am still knitting & getting better. I've done a scarf, washcloth, a toy hat, some pins & am working on another scarf & going to try my hand at a sock soon. I think it's helping to keep my hand strength while I reduce the gabapentin.
I got my tax $ & bought a nice pair of shoes since I've given up on orthotics. I've gotten 2 of them so far & they suck. They drive me nuts & I can't see any benefit when I use them. So I decided quality footwear is what I need.
26 December 2008
The socialization question
First, lets do a little bit of grammar.
so•cial•i•za•tion (s sh -l -z sh n)
n. The process of learning interpersonal and interactional skills that are in conformity with the values of one's society.
I think that can be learned at home & around town no problem. The question I think people are actually meaning to ask is about socializing. So that's what I'll address here.
I don't know about you, but when I went to school I heard a lot of "You're not here to socialize, you're here to learn" from teachers. That is true actually; school is for learning, not making friends. Add in to that the homework which means no time for playing with friends after school (& kids are getting homework in kindergarten). Then we have to take in to account the "bad kids", the kids you don't want your kids to play with or be bullied by. That is teaching anti-social behavior. Plus there's learning to worrying about if she's trendy enough. And of course gender norms, learning that girls don't play with trucks & that boys can't jump rope. Those last ones are skills I think she'll be fine without. But again, I don't think this is what people are asking either.
I think what people are asking is how will your child make friends & that is a question I can understand people having. Also how will she find people to date when she's older, of course I can see asking that as well. There are quite a few activities at our Y & at the library for younger school-aged kids. Plus there are groups for homeschooled kids, so instead of going to the science museum with 30 kids her age in school, she could go with 30 homeschooled kids of various school ages. Some homeschool activities are for a small age range, say 6-9, others are open to all homeschool kids regardless of age. She'll have tons of opportunities to interact with lots of kids is a wide range of ages, plus plenty of adults. I did take time to learn about what was out there for her to be able to have kid time, that was my biggest worry as well.
so•cial•i•za•tion (s sh -l -z sh n)
n. The process of learning interpersonal and interactional skills that are in conformity with the values of one's society.
I think that can be learned at home & around town no problem. The question I think people are actually meaning to ask is about socializing. So that's what I'll address here.
I don't know about you, but when I went to school I heard a lot of "You're not here to socialize, you're here to learn" from teachers. That is true actually; school is for learning, not making friends. Add in to that the homework which means no time for playing with friends after school (& kids are getting homework in kindergarten). Then we have to take in to account the "bad kids", the kids you don't want your kids to play with or be bullied by. That is teaching anti-social behavior. Plus there's learning to worrying about if she's trendy enough. And of course gender norms, learning that girls don't play with trucks & that boys can't jump rope. Those last ones are skills I think she'll be fine without. But again, I don't think this is what people are asking either.
I think what people are asking is how will your child make friends & that is a question I can understand people having. Also how will she find people to date when she's older, of course I can see asking that as well. There are quite a few activities at our Y & at the library for younger school-aged kids. Plus there are groups for homeschooled kids, so instead of going to the science museum with 30 kids her age in school, she could go with 30 homeschooled kids of various school ages. Some homeschool activities are for a small age range, say 6-9, others are open to all homeschool kids regardless of age. She'll have tons of opportunities to interact with lots of kids is a wide range of ages, plus plenty of adults. I did take time to learn about what was out there for her to be able to have kid time, that was my biggest worry as well.
14 December 2008
Parenting Stuff
So I've been thinking about some mom stuff. I am sad that I will never have any more kids. I wasn't planning on having more, so you wouldn't think it would bother me. It's just that it's not my choice, it's as though the choice was taken from me & that bothers me. The amount of decline after each child is significant, that combined with the fact I have EDS mean I just can't risk myself to have any more children. That's just sad to me. Dunno if that made any sense to anyone but me, lol.
Another thing is Toad's pre-school starts registration for the next year this coming week. They have 3 options; 2 are 2 days a week, either mornings or afternoons & 1 is 3 days a week, mornings. This is a change from this year where the kids could do 3 days a week afternoons. The 3 day a week they will have will be very very school-like. I had already been thinking a bit about school since the parent/teacher conference. During that the teacher was all about how Toad isn't too great with scissors or proper crayon grip, the stuff she kicked butt at was kinda glossed over with a quick "I'm sure you know she know --- wonderfully". The scissors are quite large for her hand & I know I sucked with scissors & writing for a long time. I don't see what there is to worry about with a 3.5 year old, but they do. They sent home a pair of scissors for her to practice with. I have a pair here already. Her problem with them is opening them, I am thinking about getting a loop pair to try & see if those are easier for her, they are for me. It's got me thinking about school vs home-school. Not to sound like an over protective freak, but I don't want her to have to be held to useless standards. I learned to cut just fine, just a bit later than most. I loathed gym & a lot of it hurt. From the EDS side I can see a lot of advantages of home school for Toad, plus she is a very high energy kid & that was the other concern they had for her. She needs to learn to not be excited so much. I am going to give homeschool a try this summer with home pre-school & see how it goes.
Another thing is Toad's pre-school starts registration for the next year this coming week. They have 3 options; 2 are 2 days a week, either mornings or afternoons & 1 is 3 days a week, mornings. This is a change from this year where the kids could do 3 days a week afternoons. The 3 day a week they will have will be very very school-like. I had already been thinking a bit about school since the parent/teacher conference. During that the teacher was all about how Toad isn't too great with scissors or proper crayon grip, the stuff she kicked butt at was kinda glossed over with a quick "I'm sure you know she know --- wonderfully". The scissors are quite large for her hand & I know I sucked with scissors & writing for a long time. I don't see what there is to worry about with a 3.5 year old, but they do. They sent home a pair of scissors for her to practice with. I have a pair here already. Her problem with them is opening them, I am thinking about getting a loop pair to try & see if those are easier for her, they are for me. It's got me thinking about school vs home-school. Not to sound like an over protective freak, but I don't want her to have to be held to useless standards. I learned to cut just fine, just a bit later than most. I loathed gym & a lot of it hurt. From the EDS side I can see a lot of advantages of home school for Toad, plus she is a very high energy kid & that was the other concern they had for her. She needs to learn to not be excited so much. I am going to give homeschool a try this summer with home pre-school & see how it goes.
14 November 2008
Potty Training & Discipline
No this isn't a post about those happening together, those are 2 different topics.
Potty Training is doing awesome, she'll even go by herself sometimes during the day as long as she knows I'm waiting at the bottom of the steps. She won't go by herself in the evening, but I think that's partly because she can't reach the light switch. I am going to get one of those dealie-bobs that makes it so she can. Other than nap & overnight she doesn't wear a diaper at all. she still won't poo in the potty & as much I can't wait for that day I won't rush her yet.
As for discipline I think as a parent we have an idea of how we want to discipline, but you won't know for sure til you know the temperament of your child. Right now we are tying the star system. I've got a dry erase board & when she does good stuff she gets a star when she does naughty stuff she looses one. If she makes her goal for the day she gets a treat at the end of the day. She also has one chore on there too that she needs to do (no stars for doing it). It's easy stuff like picking up a room of all her toys. The rewards for getting her goal of stars are little things like watching some tv before bed or painting or stuff like that.
Potty Training is doing awesome, she'll even go by herself sometimes during the day as long as she knows I'm waiting at the bottom of the steps. She won't go by herself in the evening, but I think that's partly because she can't reach the light switch. I am going to get one of those dealie-bobs that makes it so she can. Other than nap & overnight she doesn't wear a diaper at all. she still won't poo in the potty & as much I can't wait for that day I won't rush her yet.
As for discipline I think as a parent we have an idea of how we want to discipline, but you won't know for sure til you know the temperament of your child. Right now we are tying the star system. I've got a dry erase board & when she does good stuff she gets a star when she does naughty stuff she looses one. If she makes her goal for the day she gets a treat at the end of the day. She also has one chore on there too that she needs to do (no stars for doing it). It's easy stuff like picking up a room of all her toys. The rewards for getting her goal of stars are little things like watching some tv before bed or painting or stuff like that.
30 October 2008
Disability & Money
Getting disabled isn't for those with limited income. As a single mom my money needs to go to my daughter not me, but yet I wonder if it won't end up punishing her later on as I become more disabled due to putting myself second.
21 October 2008
A bit of this & a bit of that
I've had 2 nasty common migraines (no aura) in the past 5 days. Thankfully the 1st went away with a good nights sleep courtesy of some meds & muscle relaxers. The 2nd one hit at 3.30am so I couldn't take much for meds (otherwise I might not wake up when the alarm goes off & I won't take much during the day since I don't like to be too gorky), I just rode that one out. It was gone by bedtime.
My right hip has been a bother lately. It's like it's a 1/10 of a nanometer off from where it should be, but it pulls or presses on a nerve so it hurts a bitch. I can't seem to get it to be where it ought to be so I'm just stuck with it like this. Ah, the joys of EDS.
I had PT last week & I go again today. I think I broke the cardinal rule of PT. I changed the exercises they gave me. I was supposed to lay on my back with a my legs out flat & a towel under my knee, the using the top of my thigh press down. I've found if I lay on my tummy I don't hyperextend at all, even with the towel I would a bit. So I might get in trouble for not doing it right. I don't know how often I was supposed to do the exercises, I did most of them everyday. I skipped the headache days, cause to be honest I barely did a thing on those days.
I stopped by my old job & talked to one of the girls there about having her sister come over 1-2x per week for an hour to help me out. I am hoping she'll be up for it. I just need some help with getting laundry down to the basement to wash & getting it back up to the 2nd floor to put away. Plus the trouble of folding it all. I need some help with vacuuming & a few other things. No backbreaking stuff, no cleaning bathrooms, no icky cleaning. I was thinking 1/2 hr of that, then 1/2 an hr of playing with Toad. Just going outside & running around the yard or walking to the park. She needs to get outside more & I can't handle her outside well. She's 17 & adores little kids & thinks I'm pretty cool, so I thinking she would be up for helping me out.
My skin is even better & it's only been a little more than 2 weeks. I am starting to really think this might be the fix I needed. Some days I've skipped the morning cleaning, if I'm not going anywhere or anything I figure there is no reason to clean my face. I am thinking I'll put up a pic Friday since that will be 2 weeks.
Potty training is still doing awesome here. She will ask for a diaper if she has to poop. If we are just running a few errands & won't be out over an hr she doesn't wear a diaper. She's got wiping down great too.
Well I think that covers the highlights of what's going on here for the most part.
My right hip has been a bother lately. It's like it's a 1/10 of a nanometer off from where it should be, but it pulls or presses on a nerve so it hurts a bitch. I can't seem to get it to be where it ought to be so I'm just stuck with it like this. Ah, the joys of EDS.
I had PT last week & I go again today. I think I broke the cardinal rule of PT. I changed the exercises they gave me. I was supposed to lay on my back with a my legs out flat & a towel under my knee, the using the top of my thigh press down. I've found if I lay on my tummy I don't hyperextend at all, even with the towel I would a bit. So I might get in trouble for not doing it right. I don't know how often I was supposed to do the exercises, I did most of them everyday. I skipped the headache days, cause to be honest I barely did a thing on those days.
I stopped by my old job & talked to one of the girls there about having her sister come over 1-2x per week for an hour to help me out. I am hoping she'll be up for it. I just need some help with getting laundry down to the basement to wash & getting it back up to the 2nd floor to put away. Plus the trouble of folding it all. I need some help with vacuuming & a few other things. No backbreaking stuff, no cleaning bathrooms, no icky cleaning. I was thinking 1/2 hr of that, then 1/2 an hr of playing with Toad. Just going outside & running around the yard or walking to the park. She needs to get outside more & I can't handle her outside well. She's 17 & adores little kids & thinks I'm pretty cool, so I thinking she would be up for helping me out.
My skin is even better & it's only been a little more than 2 weeks. I am starting to really think this might be the fix I needed. Some days I've skipped the morning cleaning, if I'm not going anywhere or anything I figure there is no reason to clean my face. I am thinking I'll put up a pic Friday since that will be 2 weeks.
Potty training is still doing awesome here. She will ask for a diaper if she has to poop. If we are just running a few errands & won't be out over an hr she doesn't wear a diaper. She's got wiping down great too.
Well I think that covers the highlights of what's going on here for the most part.
14 October 2008
P/T with Ehlers-Danlos & Poland's Syndrome
Yesterday was my 1st PT appt & my therapist (here forth known as K) was pretty nice, plus pretty good I think. She did have a student with, who I really just didn't care for the personality of. I asked right off if she was familiar with EDS & with PS, she said she knew about the hypermobility issues with EDS & asked if I had an vascular issues. As for the PS she asked if I had any webbing & knew it mostly has a hand issue, I told her about the missing muscles as well. I told her I was up for trying anything she wanted to try as long as she understood that if I ask to stop she respect that & understood that resistance stuff wasn't going to be an option. She said of course, you could end up with a dislocation or worse otherwise.
She asked me to move each body part thru it's normal range of motion & as I would move she kept saying "Ok, stop, stop that's far enough." I kind of chuckled after 2-3 of those & said I was sorry, but I had no clue what normal was. Then she placed her hands on a few joints while I moved them & she could feel & hear the crepitus & the student across the room could hear it. That was a bit embarrassing. On my other knee she could feel it slide out & back in to joint & I didn't even realize it had done it. That was my right knee, aka the world famous dump me on the ground all the time knee, so I guess I shouldn't be shocked. She then had me push against her to check over all strength & had me stand on each leg in turn & stand with my eyes closed. My balance isn't 100%, but it's not to bad.
I got to wander up & down the hall, I swing my upper body too much, but I knew that. She hated my hurry walk, (sometimes you have to haul ass when you've got a 3 yr old) which consists of locking my right knee turning my hip fully sideways & locking it then walking fast. I talked to her about the problems with my neck & with how I can't turn to the sides well, that my head doesn't turn much. Well I found out that it turns just fine, I guess it's a totally normal rage of motion, it just doesn't hypermobile anymore.
We did a few exercises that barely counted as moving & I am to practice them at home. She is putting in for me to go over to OT for the assorted "toys" & because PT doesn't do hands, that's OT. She also loves the idea of adding in water PT & is fine with doing that while Toad is in school, which obviously is kick butt for me. :D We will do more land PT for a bit first, then add that. We are doing 1x per week right now.
She asked me to move each body part thru it's normal range of motion & as I would move she kept saying "Ok, stop, stop that's far enough." I kind of chuckled after 2-3 of those & said I was sorry, but I had no clue what normal was. Then she placed her hands on a few joints while I moved them & she could feel & hear the crepitus & the student across the room could hear it. That was a bit embarrassing. On my other knee she could feel it slide out & back in to joint & I didn't even realize it had done it. That was my right knee, aka the world famous dump me on the ground all the time knee, so I guess I shouldn't be shocked. She then had me push against her to check over all strength & had me stand on each leg in turn & stand with my eyes closed. My balance isn't 100%, but it's not to bad.
I got to wander up & down the hall, I swing my upper body too much, but I knew that. She hated my hurry walk, (sometimes you have to haul ass when you've got a 3 yr old) which consists of locking my right knee turning my hip fully sideways & locking it then walking fast. I talked to her about the problems with my neck & with how I can't turn to the sides well, that my head doesn't turn much. Well I found out that it turns just fine, I guess it's a totally normal rage of motion, it just doesn't hypermobile anymore.
We did a few exercises that barely counted as moving & I am to practice them at home. She is putting in for me to go over to OT for the assorted "toys" & because PT doesn't do hands, that's OT. She also loves the idea of adding in water PT & is fine with doing that while Toad is in school, which obviously is kick butt for me. :D We will do more land PT for a bit first, then add that. We are doing 1x per week right now.
10 October 2008
Just one of those days
So today was supposed to be PT, but my roommate, who was supposed to watch Toad, scheduled a meeting right in the middle of when the appt would have been. And didn't tell me til last night. So I had to reschedule. I double & triple check what her schedule is for Monday & Tuesday, she says they are wide open. I make the appt for 1pm on Monday, she has a meeting. I debate flinging myself in front of a train, but decide that's more work than calling back & rescheduling the rescheduled appt. I got it moved to 2.30, which is after her appt & the last appt of the day. I also made my appt for podiatry for the 30th. That is a short appt, so I'm guessing it's just a meet, greet, check your feet appt, nothing major being done. I just wanna be done with all these appts, but I know I won't be. The PT is gonna wanna see me a few times per week I'm sure, podiatry will need to see me 1-2 more times. I have no child care other than the 4 hrs she's at school a week (that's 4 hrs for the whole week) or my roommate so it's hard to schedule appts.
05 October 2008
Colds
Ya know, it's funny, I don't get colds often & when I do they are gone pretty quick. Toad brought a cold home from school last week & it's been kicking my ass. I guess when you're already tired all the time & achy all over adding a cold to the mix really just makes you feel like a blob. I went to bed last night at 8.30. I can't take cold meds cause they cause my heart to race so fast it feels like it will explode, so I'm just stuck suffering thru it.
On a good note the drama with getting my pain pills cleared up & I finally have them. I don't think I mentioned that, but I'm not sure, so I'm sorry if I'm repeating a bunch. My doc rx'ed some extended release pain pills, he said some insurances won't cover them. I go to fill it & the pharm says that my insurance is canceled. I got some paperwork in a few days late & so my insurance was canceled on 30/9, but it should have been reinstated on 1/10. My insurance was, but the rx part wasn't for some reason. So I call, the chick there says it should be good, but she's gotta call the other part & get them to switch it. So they didn't get it fixed til the next day. I couldn't get to the pharm til just before 5, they re-run the rx & the med isn't covered. At this point I consider banging my head on the wall. The awesome chick at the pharm calls over to get the rx changed to another form of the drug. My doc isn't in, so she get transferred to the talk to a random doc line. They don't answer & she gets transferred to someone to leave a message, she tells them it's 5 to 5 & doesn't want to leave a message, she wants to talk to a doc since this is a Friday. The person on the other line says they will have the doc call back, that they will give him the message personally. I wait a bit & then tell the pharm I am going home, to call me when they figure out/hear back. She calls me later & tells me the random doc said if I was in pain, I should just go to the E/R & they could decide if I needed pain meds. (BTW to that doc, Thanks asshole. I think I know who that doc is too, there is one doc there who doesn't believe in giving pain meds.) I am now lining my head up with the wall to start banging, but the pharm chick says she decided to just call the E/R & see if the doc there would help. It was a doc I'd seen before when I hurt my foot. He was fine with writing for me thankfully. I told her it was too late for me to get them that day but I would pick them up the next day (Sat) & thanked her a lot. So tomorrow I'll call my doc & check that this matches up with what he was going for, which I'd think it would.
Hm, I guess this post was less about my cold & more about the pain meds. Well one more thing on the cold front, this is the first "big" cold Toad has had & while there is more whining than one person should have to listen to, she's been dealing very well with it. There is no pre-school tomorrow, which is kinda good cause she would have to miss it. I just hope she's ok by Wed for school, I'd feel bad if she missed a whole week. My roomie finally got the cold yesterday & she's out of sick time at work so this week is gonna be a hell week for her.
On a good note the drama with getting my pain pills cleared up & I finally have them. I don't think I mentioned that, but I'm not sure, so I'm sorry if I'm repeating a bunch. My doc rx'ed some extended release pain pills, he said some insurances won't cover them. I go to fill it & the pharm says that my insurance is canceled. I got some paperwork in a few days late & so my insurance was canceled on 30/9, but it should have been reinstated on 1/10. My insurance was, but the rx part wasn't for some reason. So I call, the chick there says it should be good, but she's gotta call the other part & get them to switch it. So they didn't get it fixed til the next day. I couldn't get to the pharm til just before 5, they re-run the rx & the med isn't covered. At this point I consider banging my head on the wall. The awesome chick at the pharm calls over to get the rx changed to another form of the drug. My doc isn't in, so she get transferred to the talk to a random doc line. They don't answer & she gets transferred to someone to leave a message, she tells them it's 5 to 5 & doesn't want to leave a message, she wants to talk to a doc since this is a Friday. The person on the other line says they will have the doc call back, that they will give him the message personally. I wait a bit & then tell the pharm I am going home, to call me when they figure out/hear back. She calls me later & tells me the random doc said if I was in pain, I should just go to the E/R & they could decide if I needed pain meds. (BTW to that doc, Thanks asshole. I think I know who that doc is too, there is one doc there who doesn't believe in giving pain meds.) I am now lining my head up with the wall to start banging, but the pharm chick says she decided to just call the E/R & see if the doc there would help. It was a doc I'd seen before when I hurt my foot. He was fine with writing for me thankfully. I told her it was too late for me to get them that day but I would pick them up the next day (Sat) & thanked her a lot. So tomorrow I'll call my doc & check that this matches up with what he was going for, which I'd think it would.
Hm, I guess this post was less about my cold & more about the pain meds. Well one more thing on the cold front, this is the first "big" cold Toad has had & while there is more whining than one person should have to listen to, she's been dealing very well with it. There is no pre-school tomorrow, which is kinda good cause she would have to miss it. I just hope she's ok by Wed for school, I'd feel bad if she missed a whole week. My roomie finally got the cold yesterday & she's out of sick time at work so this week is gonna be a hell week for her.
28 September 2008
Pins & Needles Hand
So needless to say with my shoulder & elbow having been out my hand is all pins & needles. I just feel like whining, but I'll spare you all. The elbow is back where it belongs & the shoulder is just about right, but just a hair off or I pissed off something in there & that's what's hurting, either way it still hurts.
On to other topics, I am off the Pamelor, couldn't take the side effects anymore. The biggest issue one being my heart going flutter-flutter-BOOM, that feeling wigged me out a bit. The neuro wasn't in the office when I called to say I was going to stop taking it. When her asst called me back she said the neuro didn't have my chart to consult, but if I wanted to try Topamax she'd call it in for me, unless I had kidney stones, which she thought I might. I have had at least a dozen that have passed & have at least 1 in my left kidney right now, so I passed on taking that. So I'll stay on my Neurontin for now. I have been reducing the dose a bit even though I I feel my neuropathy more. I am sick of feeling so tired & the neuropathy I have isn't going to kill me. I need a break from the drug right now & I'm not going to stop taking it, but a reduced dose for a few weeks should be ok.
I go see my GP next week & talk over who/where he'll want to refer me out to & what I want to be referred out to. This is also the appt where I decide if he is a doc I will be keeping. He did blow off a lot of issues I was having thinking they would just go away or something & I was thinking of firing him, but he had been getting a bit better & does seem eager to learn. A doc who can admit he might not know everything under the sun & is willing to not only take literature I bring in, but actually read it is a rare doc. So we'll see how this appt goes, see how much of the EDS data I brought at the last appt he read & if he & I are on the same page.
Oh & on a wonderful note the potty training is going wonderfully!
On to other topics, I am off the Pamelor, couldn't take the side effects anymore. The biggest issue one being my heart going flutter-flutter-BOOM, that feeling wigged me out a bit. The neuro wasn't in the office when I called to say I was going to stop taking it. When her asst called me back she said the neuro didn't have my chart to consult, but if I wanted to try Topamax she'd call it in for me, unless I had kidney stones, which she thought I might. I have had at least a dozen that have passed & have at least 1 in my left kidney right now, so I passed on taking that. So I'll stay on my Neurontin for now. I have been reducing the dose a bit even though I I feel my neuropathy more. I am sick of feeling so tired & the neuropathy I have isn't going to kill me. I need a break from the drug right now & I'm not going to stop taking it, but a reduced dose for a few weeks should be ok.
I go see my GP next week & talk over who/where he'll want to refer me out to & what I want to be referred out to. This is also the appt where I decide if he is a doc I will be keeping. He did blow off a lot of issues I was having thinking they would just go away or something & I was thinking of firing him, but he had been getting a bit better & does seem eager to learn. A doc who can admit he might not know everything under the sun & is willing to not only take literature I bring in, but actually read it is a rare doc. So we'll see how this appt goes, see how much of the EDS data I brought at the last appt he read & if he & I are on the same page.
Oh & on a wonderful note the potty training is going wonderfully!
27 September 2008
Two
That would be the number of fairly bad subluxations I am sitting here with right now. See it all started with a simple idea. Toad & I needed to swap bedrooms. Turns out I can't move a twin bed by myself. I can't get it to reduce right, neither will go where it needs to. My hand is major pins-n-needles now & my joints just ache, that deep, deep ache nasty pain. If I work hard I can push the pain back enough that I don't have to cry, but this is bad. I'm gonna take one of my muscle relaxers before bed & hope somehow the reduction-fairy comes in the night.
OUCH!
OUCH!
25 September 2008
Being a EDS Mom
There are things as a mom that are different for me than for those who don't have EDS. That's not to say the emotions I have aren't the same or similar to those who have other genetic issues.
I was walking my daughter home after school yesterday & the whole way I could feel her wrist slip in & out of joint. I don't hold her hand because of this or her elbow or her shoulder, but rather I let her hold a few of my fingers. That also helps so that if she does that kid thing where she just drops to the ground because she doesn't want to keep walking or go the direction we are going she isn't going to end up with a dislocation & neither will I.
My daughter is 3, I can't carry her anymore. She's just over 30lbs & I stopped carrying her for the most part once she had walking down pat. It causes me too much pain to carry her. I almost never pick her up anymore because it's not really an option anymore. I only do it if it's because there is a danger in not doing so.
I watch her move a lot. Looking at how she is using her body, seeing her do things that are EDS & having a sadness in my heart from it.
Plus there are the odd things at this house. Like say the fact everyone owns at least 3 weeks of clothing, including sock & underthings, because our washer & dryer are in the basement & there are periods where I can't go down those steps to wash clothes. Or the fact I don't walk down steps, I slide down on my butt. Or the fact some days I can barely walk from one room to another. Or the fact on bad days I drink almost nothing so that I won't have to walk up stairs to the bathroom. This is what my daughter thinks is normal.
I was walking my daughter home after school yesterday & the whole way I could feel her wrist slip in & out of joint. I don't hold her hand because of this or her elbow or her shoulder, but rather I let her hold a few of my fingers. That also helps so that if she does that kid thing where she just drops to the ground because she doesn't want to keep walking or go the direction we are going she isn't going to end up with a dislocation & neither will I.
My daughter is 3, I can't carry her anymore. She's just over 30lbs & I stopped carrying her for the most part once she had walking down pat. It causes me too much pain to carry her. I almost never pick her up anymore because it's not really an option anymore. I only do it if it's because there is a danger in not doing so.
I watch her move a lot. Looking at how she is using her body, seeing her do things that are EDS & having a sadness in my heart from it.
Plus there are the odd things at this house. Like say the fact everyone owns at least 3 weeks of clothing, including sock & underthings, because our washer & dryer are in the basement & there are periods where I can't go down those steps to wash clothes. Or the fact I don't walk down steps, I slide down on my butt. Or the fact some days I can barely walk from one room to another. Or the fact on bad days I drink almost nothing so that I won't have to walk up stairs to the bathroom. This is what my daughter thinks is normal.
22 September 2008
The Sahara Lives in my Mouth
So the doc said I might have a bit of dry mouth with the Pamelor, but wow this is insane. It's as though I have a bunch of those suckers the dentist puts in your mouth in there it's so dry. I am moving it from a pm med to an am med since it really doesn't make me tired in the least. I'm not sure if it's making me hyper or if it's the lower amt of Neurontin that is doing it. Either way I am enjoying being awake, not groggy.
The bad news is that I don't think it's going to work well for the neuropathy cause that is coming back. I am so itchy, which I used to be before Neurontin, & the pins & needles are coming back too. The itchy is only on my lower legs & arms, plus the top of my chest, which is where it was before so I know it's not an allergic reaction. It might just be that the Pamelor just hasn't built up in my system. Oh & the eating is just ridiculous. I might gain 40lbs in the next week from how I am eating & you just can't help it. So far there is no effect on the headaches either, but it's only been 12 days & only 10mg.
So I'm stilling giving it a go, but I'm not sure how well it's working or going to work.
On a happy note Toad started using the potty! (If you don't have a child you may not get how wonderful this is, but imagine you had to handle items soaked in urine & feces 6-18x per day for 3 years & then you'll know why this is such joy.)
The bad news is that I don't think it's going to work well for the neuropathy cause that is coming back. I am so itchy, which I used to be before Neurontin, & the pins & needles are coming back too. The itchy is only on my lower legs & arms, plus the top of my chest, which is where it was before so I know it's not an allergic reaction. It might just be that the Pamelor just hasn't built up in my system. Oh & the eating is just ridiculous. I might gain 40lbs in the next week from how I am eating & you just can't help it. So far there is no effect on the headaches either, but it's only been 12 days & only 10mg.
So I'm stilling giving it a go, but I'm not sure how well it's working or going to work.
On a happy note Toad started using the potty! (If you don't have a child you may not get how wonderful this is, but imagine you had to handle items soaked in urine & feces 6-18x per day for 3 years & then you'll know why this is such joy.)
15 September 2008
It seemed like a good idea at the time
So I decided instead of walking down to pre-school, then back home, then back down to get Toad & finally back home that I would just take my laptop with me & stay downtown. I really forgot to factor in the fact that I have to walk 1 of the 2 speeds I can walk or walking is very painful & my odds of falling are higher, but my child doesn't like to walk either of those speeds. Add to that the weight of the laptop pulling on my neck & I guess I should be happy I didn't fall. I am in agony & sitting in the coffee shop I just to work in. I am now trying to decide if I would do better staying here & walking home carrying this thing or if I'd do better resting for a tiny bit, walking home with the laptop, then going back down to pick up Toad & walking back. On Wednesday I'll just bring a paperback with & read.
On a slighty brighter note I have a school girl crush on the cute guy at the Y. I know cause I wore mascara to take Toad to pre-school, lol. I think I'll take this second to say that I am a single mom, not sure if I've mentioned this before, but I may have. Toad's biological father is not in the picture at all other than to send a few $ most months & we only dated for a few months. I just don't have the energy to deal with a relationship right now, I'm just trying to get thru life one day at a time. But just because I don't want a relationship doesn't mean I can't feel cute & flirt with someone, so I am flirting with the cute guy at the Y, cause it's fun.
On a very cool note I got a wheelchair for free this weekend! We went to run a few errands this weekend & stopped by Roomie's Dad's house. (Ok, this may get confusing.) Over the summer Roomie's sister, dad, mom & step-father have a ton of yardsales & most things get stored at Roomie's dad'd house. The step-father works as a trucker & is known as the guy who "dumpster dives", most of the time it's just stuff set out at the curb along his route or things people will ask him if he wants before they would throw out rather than climbing in dumpsters. So anyhow we stopped by & in the garage with the leftover yardsale stuff was a wheelchair, so I announced I was taking it. It's the first chair on this page. It's not new nor is it s perfect fit, but it's darn close & it's free. The armrests come off which I have to have or I can't comfortably reach the wheels to push myself, the legrests come off too which is nice since I often leg propel myself.
Oh & because I haven't change the topic enough times let's do it once more! I am switching meds from Neurontin to Pamelor & it's been interesting so far. I was on 600mg in the am & afternoon & 900mg in the evening for the Neurontin. I am now at 600mg 3x per day. As for the Pamelor I am at the 10mg 1x per day at night. I am finding I remember my dreams more, feel a bit less drowsy in the day, those are the good effects. The bad ones are I've become a total flamiong bitch (which I do hope will mellow back to normal bitchy) & the leg itchies have come back in force. I have scabs all over my legs from itching, ugh. It's like RLS except instead of needing to move I get itchy. So hopefully as I ramp up on the Pamelor it will go away again. I do like feeling more alert & dreaming again, but not if it means I have to be an obnoxious bitch who keeps itching her legs til they bleed. (btw: Neurontin=gabapentin & Pamelor=nortriptyline)
On a slighty brighter note I have a school girl crush on the cute guy at the Y. I know cause I wore mascara to take Toad to pre-school, lol. I think I'll take this second to say that I am a single mom, not sure if I've mentioned this before, but I may have. Toad's biological father is not in the picture at all other than to send a few $ most months & we only dated for a few months. I just don't have the energy to deal with a relationship right now, I'm just trying to get thru life one day at a time. But just because I don't want a relationship doesn't mean I can't feel cute & flirt with someone, so I am flirting with the cute guy at the Y, cause it's fun.
On a very cool note I got a wheelchair for free this weekend! We went to run a few errands this weekend & stopped by Roomie's Dad's house. (Ok, this may get confusing.) Over the summer Roomie's sister, dad, mom & step-father have a ton of yardsales & most things get stored at Roomie's dad'd house. The step-father works as a trucker & is known as the guy who "dumpster dives", most of the time it's just stuff set out at the curb along his route or things people will ask him if he wants before they would throw out rather than climbing in dumpsters. So anyhow we stopped by & in the garage with the leftover yardsale stuff was a wheelchair, so I announced I was taking it. It's the first chair on this page. It's not new nor is it s perfect fit, but it's darn close & it's free. The armrests come off which I have to have or I can't comfortably reach the wheels to push myself, the legrests come off too which is nice since I often leg propel myself.
Oh & because I haven't change the topic enough times let's do it once more! I am switching meds from Neurontin to Pamelor & it's been interesting so far. I was on 600mg in the am & afternoon & 900mg in the evening for the Neurontin. I am now at 600mg 3x per day. As for the Pamelor I am at the 10mg 1x per day at night. I am finding I remember my dreams more, feel a bit less drowsy in the day, those are the good effects. The bad ones are I've become a total flamiong bitch (which I do hope will mellow back to normal bitchy) & the leg itchies have come back in force. I have scabs all over my legs from itching, ugh. It's like RLS except instead of needing to move I get itchy. So hopefully as I ramp up on the Pamelor it will go away again. I do like feeling more alert & dreaming again, but not if it means I have to be an obnoxious bitch who keeps itching her legs til they bleed. (btw: Neurontin=gabapentin & Pamelor=nortriptyline)
11 September 2008
Starting Pre-School
Ok so now for something more cheerful, Toad's 1st week of pre-school.There had been an Open House last week so she knew about school & was really excited. We walked to school (since I don't drive & it's only a few blocks away) & she was just about jogging the whole way. The pic here is from when we were in front of the school & I asked her to stop so we could do a pic, she opted to run to the door. When I opened the door she ran in & said "Mrs. N, Mrs. B, I'm here!" After about 5 minutes I left. When it was time to pick her up Mrs N said no one cried or got hurt & in the 3 yr old room that's a big deal. She told me about her day & said she loved it.
Wednesday went just as well. When I was leaving she told me "Bye-bye Mama, I see you tomorrow!"
When it was time for pick-up I was about 20 minutes early & the kids weren't in the class, so I wasn't sure if they were on a walk or in the kids gym (her pre-school is in a YMCA) so I asked the cute guy at the desk where they were so I could make sure I wasn't along the path they would come back & he said to go sit in the pool observation area. I hung out over there & watched some lady getting pool PT which was pretty cool. Then when it was 5 to 11 I headed over to the waiting area & all the seats were taken so I sat on the floor cause I couldn't stand. When it was time to go in the class & get the kids I had to get up off the floor which is an interesting ordeal which involves me contorting a bit & rocking back & forth a few times & then tossing myself up. I can't use my arms or the elbows go out. Of course the cute guy from the desk was there when I did it, but he thought it was a pretty nifty technique. Amelia was a bit cranky it was the end of the day, but all in all she loves it.
05 September 2008
Naps for the Slacker Queen
I think I need to think about taking a short nap in the afternoon. I know that makes me sound super slacker, but I am already tired all the time so it's not like I could get less productive & maybe I would have some energy in the late afternoon/early evening. I need to be able to get things done & right now I'm too tired. I think I also need to get a better rhythm on my day as well. Perhaps having a set daily routine will help me slog thru getting things done. I kept slacking because I thought I would get better, as that's not going to happen I think I need to come up with some coping techniques for the right now. (Yes, I do know I may be able to get better than I am right now, but I also know that I will always have some days like this or worse & need to be able to function on some level during those phases.) So I think starting next week I'll do a nap in the afternoon when Toad is napping. I can get some chores done while she's at school (or on the days she's not at school we'll do an hour of TV). Maybe that will help.
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