It should be a mandatory part of therapy sessions. Ok, let me back up. Since I got my power chair, I've been really hesitant about using it outdoors, especially where there are no curb cuts, so, we went outside to try curbs. It was cold and windy, really windy but, it was nice to be outside the normal environment of therapy for a while. It was an adventure to say the least. OT expected it to make it up some curbs and well.... we got stuck. Back up. Try again. Stuck. Back Up. Try Again. Stuck. Let him try. He backs up. Stuck. Backs up. Stuck. Finally he got me back up the curb and by this time we were both cold and decided we were going inside. The DME was there so, he programmed the chair to have more torque and hopefully those pesky curbs won't be a problem anymore, I think I'll be asking to go back outside and try again next week after we try some new cushions.
Yes, I need a new cushion . YAY! The one I have right now doesn't provide enough "cushioning" and doesn't fit on my power chair; my manual is 15 X 14? and my power is a 15 X 16. I will be trying the Ride Forward Cushion and a few others so, we'll see. The Ride cushion won't be looked after by insurance, but considering I paid $700 for my Slimline, we'll figure out a way to pay the $450 for the Ride cushion.
I have yet to hear back about the therapeutic riding. Yes, I am fully aware I just called yesterday; I am NOT the most patient person when it comes to therapy/medical/equipment needs.
On the way home from therapy today I had the most fantastic bus driver ever. We got to talking about what I wanted to do when I was older and I said I want to be an OT (although after the stories from my PT and OT about their anatomy classes and the cow eye dissection I did in Biology, I don't know ). Anyways, he told me he thought I'd be a great OT. He told me about how his wife is a Special Care Aid and how things like lifting really shouldn't be a problem because they have lifts and stuff. He told me that the people who discourage me, they're probably jealous. I never thought about it that way before. Anyways, the conversation just made me smile
What I'm blogging about right now is just random stuff but, it's positive and I feel like sharing those moments is JUST as important as sharing my rough days.
Continued prayers for the MRI results to get to my PT soon and for me to be able to start treatment with her would be much appreciated ( or other treatment besides PT if that's what needs to happen) and for prayers regarding be able to work out the cushion and therapeutic riding would be very much appreciated. I know these good days and the progress I have been experiencing is due to you, so thank you so much for your thoughts and prayers.
"I would thank you from the bottom of my heart, but for you my heart has no bottom."-Author Unknown.
J
Thursday, April 28, 2011
Wednesday, April 27, 2011
Theraputic Riding.
Hey all,
I saw my PT today. She told me my ROM is pretty darn good, so go me! I'm not entirely sure how I accomplished that as I don't do a lot of stretching. But, I do long sit in the chaise lounge while on my laptop. Standing has also helped with combating tightness. AFOS look good and I am supposed to be easing into wearing them. She also told me I should be standing for about 20 minutes at a time until I adjust to the AFOS. She also told me I should be standing for no more than 45 minutes per "session". Well, okie doke; I thought I was supposed to stand for an hour. She called to see if there was a report on my MRI yet, no dice. She said that if the issue is a small rotator cuff tear or an impingement, she should be able to do some PT to address that, because even though this particular clinic isn't an outpatient orthopedic physical therapy place, she has worked with clients with these problems in the past; it would be awesome for her to be able to do that so I don't have to add another therapist to the list. She has also asked that I be seen by the orthopedic surgeon at clinic, this time for my lower body. The reason for this is, in the next few months I will be transitioned to getting services solely through the place I go for OT and so, they want to do one last "tie up loose end" check.
My hips are really tight though, so she suggested therapeutic riding because it "forces" your legs to be apart. Unfortunately, it isn't covered by insurance but, I have been in contact with a therapeutic riding stable and they are supposed to call me back. I think it would be neat to do it over the summer, at least. When I called the lady asked if I was inquiring for myself. Yes. Are you handicapped? OK wait, what? No I'm calling a therapeutic riding stable for myself, but I am not handicapped in any way. FYI, I am physically challenged. I didn't know whether to laugh or hang up.
All in all, a good appointment. I'm hopefully she will receive the MRI report very soon, so we can start treating it in some way.
Prayers for the MRI report to be received shortly and for treatment to be able to start with the same PT I see for my CP (or other treatment) would be very much appreciated. Thank you for reading and most of all, thanks for your thoughts and prayers.
J
"Here is the test to find whether your mission on Earth is finished; if you're alive, it isn't'-Richard Bach
I saw my PT today. She told me my ROM is pretty darn good, so go me! I'm not entirely sure how I accomplished that as I don't do a lot of stretching. But, I do long sit in the chaise lounge while on my laptop. Standing has also helped with combating tightness. AFOS look good and I am supposed to be easing into wearing them. She also told me I should be standing for about 20 minutes at a time until I adjust to the AFOS. She also told me I should be standing for no more than 45 minutes per "session". Well, okie doke; I thought I was supposed to stand for an hour. She called to see if there was a report on my MRI yet, no dice. She said that if the issue is a small rotator cuff tear or an impingement, she should be able to do some PT to address that, because even though this particular clinic isn't an outpatient orthopedic physical therapy place, she has worked with clients with these problems in the past; it would be awesome for her to be able to do that so I don't have to add another therapist to the list. She has also asked that I be seen by the orthopedic surgeon at clinic, this time for my lower body. The reason for this is, in the next few months I will be transitioned to getting services solely through the place I go for OT and so, they want to do one last "tie up loose end" check.
My hips are really tight though, so she suggested therapeutic riding because it "forces" your legs to be apart. Unfortunately, it isn't covered by insurance but, I have been in contact with a therapeutic riding stable and they are supposed to call me back. I think it would be neat to do it over the summer, at least. When I called the lady asked if I was inquiring for myself. Yes. Are you handicapped? OK wait, what? No I'm calling a therapeutic riding stable for myself, but I am not handicapped in any way. FYI, I am physically challenged. I didn't know whether to laugh or hang up.
All in all, a good appointment. I'm hopefully she will receive the MRI report very soon, so we can start treating it in some way.
Prayers for the MRI report to be received shortly and for treatment to be able to start with the same PT I see for my CP (or other treatment) would be very much appreciated. Thank you for reading and most of all, thanks for your thoughts and prayers.
J
"Here is the test to find whether your mission on Earth is finished; if you're alive, it isn't'-Richard Bach
Tuesday, April 26, 2011
My Heart Is Smiling.
I've had a rough few days as you know and it's getting better :) (Thank you). I have a couple of things to mention. First off (and some of you may have read this before I deleted it, and I still don't know why I did.) The therapy I am getting right now is supposed to last 6-8 weeks. I lost it when my OT told me. Done. Gone. Not a good therapy session. I didn't sleep the night he told me. Mom called him the next day and told him how unbelievably, extremely upset I was over this and he assured her this was simply a guideline and he has had clients with him for far longer than that. He also told her that when the time does come, there will be a meeting, a home program, and possibly infrequent review appointments (He told me this as well, but at the time, my brain couldn't process anything; his mouth was moving, but what he was coming out of his mouth made no sense) Even though I know it won't just happen, I wonder each time I go there if today is going to be the day I don't get a schedule. I know I have lots of things to accomplish in therapy and I have made lots of progress. I look forward to it ever single week because I feel that progress and I really can't put into words what that's like. The biggest difference in this therapy as compared to prior therapy as I've said several times; I have a therapist who cares about me and believes in me and because he has a positive attitude, I can maintain mine (for the most part). Point being, could everyone say a prayer that I am not discharged until the time is right and that I can meet more of my goals/make more progress in therapy? Also, I really wanted to work on wheelchair skills (wheelies, curbs and maybe even stairs *gasp*), but because of my shoulder, I have not been allowed to. OT told us if I get discharged before things clear up with my shoulder, I should be able to be readmitted when I can work on these things so, prayers that if my shoulder doesn't work itself out before I have to be discharged, I can be readmitted without issue and be able to work with him and not a different therapist (consistency is a really good thing in therapy and since we started working on it, it would be even better to able to work with him).
My heart was warmed today by a message I got from my aunt:
Hi ,
I put your story on CP on my Facebook,wanted to let you know a lady I don't know at all but play games with sent me a message,here it is
Hi
Thank you for sharing this great testimony. My 16 month old granddaughter was born with cerebral palsy and it is so encouraging to see how others have dealt with this condition.
Happy Easter.
I feel like maybe, just maybe, my goal of helping other people who are facing similar situations is going somewhere. This little girl's journey has just begun, but with a strong support system, she will go far. She will defy the odds and she will reach for the moon and hit the stars.
J
“And then he said, 'I think I can make that happen on my own,' and he did. He literally commanded his finger to move, and it did.”- Danna Reeve.
My heart was warmed today by a message I got from my aunt:
Hi ,
I put your story on CP on my Facebook,wanted to let you know a lady I don't know at all but play games with sent me a message,here it is
Hi
Thank you for sharing this great testimony. My 16 month old granddaughter was born with cerebral palsy and it is so encouraging to see how others have dealt with this condition.
Happy Easter.
I feel like maybe, just maybe, my goal of helping other people who are facing similar situations is going somewhere. This little girl's journey has just begun, but with a strong support system, she will go far. She will defy the odds and she will reach for the moon and hit the stars.
J
“And then he said, 'I think I can make that happen on my own,' and he did. He literally commanded his finger to move, and it did.”- Danna Reeve.
Monday, April 25, 2011
Tired of it All
I feel like I have NO strength left. It just isn't fun anymore. The doctors appointments. The pain. The "unknown" of so many things. The equipment needs that seem to never end The Physical Therapy, which is something that will never be over and something I hold a lot of guilt about because I know I should do it but, I don't. The Occupational Therapy. I went there thinking "oh he'll fix everything.". Well ladies and gentleman, that was a rude awakening Being there has made me realize I have a lot more work to do than I thought and there are things that just can't be fixed, . My OT can not fix my visual/processing problems; he can not fix that I have a brain injury. I'll be honest. That kills me. I want to drive. I want to worry about what I'm going to wear tomorrow, not if I'm actually going to wake up having a good or bad day with pain.I don't want to worry about whether I will actually be able to accomplish getting my AFOS and shoes on in time, or whether my Resource Teacher will maybe, just maybe be a half decent person for the day. You get the point. I'm tired. I'm sad. I'm letting myself vent. These feelings have poured out following Thursday which entailed forgetting my binder at school (and I'm off for a week with an assignment due the first day back and a test that Friday), going to OT and getting power chair, then there was the issues at OT. I feel awful. Plain and simple. I blogged about how much I didn't want the power chair, but what I didn't say, was how rude I was to him. I know that he always has and always will have my best interest at heart, but I was SO mad at him, mom, and dad because of making me get the power chair. He basically said that he had gotten it for me and done his job and now it was up to me to make the right choices. Very true. . I didn't even so much as say thank you. I seriously owe him an apology AND a thank you. Then there's the renos. Fuck. It's got everyone in a pissy, stressed mood. I know they are for me so we can get out, but I want them to just be D O N E as does everyone else. Then it's making mom miserable. If mom ain't happy, nobody is. I'll admit, having a child with special needs is hard. I know it is. She's tired just like me and so every time I bring up a therapy, or doctor, or pain, or anything related, she seems to be very snappy.I know she doesn't mean to be. She does so much for me. She fights silly therapists and teachers and other team members so I have everything I need. That makes me feel bad. Really bad. I have never written this because... it's hard for me to admit. I wish she didn't have to. I wish I could be like her other three children who didn't need these things. I know neither of my parents blame me. They love me for me and these are my own insecurities. I actually broke down and told my dad that I feel badly about it. His response. "You don't need to and you shouldn't feel badly. You didn't ask for any of this. You didn't ask to have legs that don't work. You didn't ask to need a wheelchair" No, he's right, I didn't and I hate that I feel guilty about it.
My aunt put the Cerebral Palsy Awareness entry I wrote on her Facebook. This is the side of me most people see. The happy, upbeat, positive kid who accepts her circumstances. I try to be that kid and the sad part is, I think I do it for others more than I do it for me. The thing is, I'm not ok with my circumstances at this very moment,. I want to be just like everyone else. If it were just the walking that would be different. It's not the walking. It's the stress of everything that being in a wheelchair involves.
Prayers for strength, hope, faith, less stress, mom to be in a better mood, and a much better session at therapy this week (for me and my amazingly patient OT)
"Difficulties are meant to rouse, not discourage. The human spirit is to grow strong by conflict."- William Ellery Channing
J
My aunt put the Cerebral Palsy Awareness entry I wrote on her Facebook. This is the side of me most people see. The happy, upbeat, positive kid who accepts her circumstances. I try to be that kid and the sad part is, I think I do it for others more than I do it for me. The thing is, I'm not ok with my circumstances at this very moment,. I want to be just like everyone else. If it were just the walking that would be different. It's not the walking. It's the stress of everything that being in a wheelchair involves.
Prayers for strength, hope, faith, less stress, mom to be in a better mood, and a much better session at therapy this week (for me and my amazingly patient OT)
"Difficulties are meant to rouse, not discourage. The human spirit is to grow strong by conflict."- William Ellery Channing
J
Friday, April 22, 2011
Appointments, appointments, and more appointments
Hey everyone!
I had my MRI yesterday and I actually did ok. I had hard time when I first went in, but after that it was fine. They gave me music and put a weight on my hand to keep it palm up. The left shoulder (the second shoulder) had to be done twice because apparently I wiggled to much. The problem was the weight she put on the left one made me move lots, I don't know why, so, she had to do the left shoulder twice. Everytime I would hear the noise start/stop, even if I expected it, I would have spasms so, that was a fun time. I should get the results in about a week.
I also got my power chair yesterday. We were crusing around at therapy and then my OT went to put air in my tires on my other chair and he told me I could go for a walk and that he would catch up if I wanted to. No. So, he knew something was wrong and asked what. I didn'y really know how to put it into words so I said nothing. He looks at me and says "you don't want it." I JUST about cried. No,no good sir, I do not. It just kind of hit me at that moment how bad my shoulder really seems to be; it hit me that I truely NEED this chair. Like I said to him yesterday, though, just because I need it doesn't mean I have to like it. I feel badly though, because he got it through quickly and he was trying to get me pumped up about it yesterday and I shot him down. I wasn't trying to be a jerk and I hope he understands that I appreciate very much all the things hr does, I just am having a tough time accepting the effects of my shoulders.
This next week is going to be nuts. I have a massage on Monday, grad photos of Tuesday, Physical Therapy Wednesday, and Occupational Therapy Thursday. So much for Easter Break, but I'm very glad to be having these appointments and getting issues sorted out.
Have a wonderful Easter All, and thanks for reading!
J
I had my MRI yesterday and I actually did ok. I had hard time when I first went in, but after that it was fine. They gave me music and put a weight on my hand to keep it palm up. The left shoulder (the second shoulder) had to be done twice because apparently I wiggled to much. The problem was the weight she put on the left one made me move lots, I don't know why, so, she had to do the left shoulder twice. Everytime I would hear the noise start/stop, even if I expected it, I would have spasms so, that was a fun time. I should get the results in about a week.
I also got my power chair yesterday. We were crusing around at therapy and then my OT went to put air in my tires on my other chair and he told me I could go for a walk and that he would catch up if I wanted to. No. So, he knew something was wrong and asked what. I didn'y really know how to put it into words so I said nothing. He looks at me and says "you don't want it." I JUST about cried. No,no good sir, I do not. It just kind of hit me at that moment how bad my shoulder really seems to be; it hit me that I truely NEED this chair. Like I said to him yesterday, though, just because I need it doesn't mean I have to like it. I feel badly though, because he got it through quickly and he was trying to get me pumped up about it yesterday and I shot him down. I wasn't trying to be a jerk and I hope he understands that I appreciate very much all the things hr does, I just am having a tough time accepting the effects of my shoulders.
This next week is going to be nuts. I have a massage on Monday, grad photos of Tuesday, Physical Therapy Wednesday, and Occupational Therapy Thursday. So much for Easter Break, but I'm very glad to be having these appointments and getting issues sorted out.
Have a wonderful Easter All, and thanks for reading!
J
Tuesday, April 19, 2011
Prayers.
Hi Everyone,
If you wouldn't mind could you say a prayer for my OT and his family? I don't want to go into personal details, but some strange happenings have me wondering if everything is ok, so, please pray that it is.
Thanks,
J
If you wouldn't mind could you say a prayer for my OT and his family? I don't want to go into personal details, but some strange happenings have me wondering if everything is ok, so, please pray that it is.
Thanks,
J
Monday, April 18, 2011
Progress Baby!
We bought a stairlift today!!!! There will offically be no more crawling up and down the stairs (unless I decide to go to the upper level, which I really don't need to do.) It will be installed as soon as the carpet is replaced on the stairs; the plan is to do that next week. Renos continue on the bathroom and the goal is to have that done Sunday. I will now be able to access the bathroom, my room, the kitchen, and the dining room in my wheelchair. YAY! Living room is no big deal because it'll be a total of maybe 20 steps from my wheelchair to the couch.
I FINALLY got an appointment with Physiatry, May 10th, thanks to that persistent OT of mine :). At that time he will look at my shoulder and maybe order an EMG. He will also be looking at my toes to see whether or not I will benefit from Botox (or other treatment) as I am still having pain and a lot of tone in my toes.
Speaking of shoulder, it has been pretty good lately *knock on wood*. I went for a massage (that lady works wonders) and have been using lots of heat which is helping loads. I will be going back to the Massage Therapist on Monday for another treatment and this will happen every week and a half to two weeks until she can get my muscles to loosen up/calm down more. After that, we'll go once a month to maintain things.
Also, I go to get my AFOS fitted Wednesday and then to see my PT the following Wednesday to make sure they are fitting and to review my stretching program. She's not going to be happy with me as I really haven't been doing much other than standing and long sitting. A lot of the stretches my other PT was going to have me do involved my shoulders so, new PT may be doing some revamping. Lucky her!
Dad also went and looked at tie downs and ramps for the van. He found the ramp and is waiting on the DME regarding tie downs because since we have stow and go seating, there was only 3 spots they could find for tie downs and we need four. They have assured us they will work it out so this girl IS NOT going to stress. The other AWESOME thing is health insurance will cover the cost of the tie downs (or most of it, anyways) and the full cost of the ramp as long as my OT submits a requistion, which he'll probably do this week; he needs to know what we're getting first.
My MRI is Thursday as well, so I'm hoping and praying for good news with that.
Thank you to all who said prayers for the stair lift, van, or anything else. It is much appreciated and if you wouldn't mind, could you please pray for good results from the MRI and for continued progress in therapy as well as the homefront :).
Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. For everyone who asks receives, he who seeks finds; and to him who knocks, the door will be opened.
- Matthew 7:7-8
I FINALLY got an appointment with Physiatry, May 10th, thanks to that persistent OT of mine :). At that time he will look at my shoulder and maybe order an EMG. He will also be looking at my toes to see whether or not I will benefit from Botox (or other treatment) as I am still having pain and a lot of tone in my toes.
Speaking of shoulder, it has been pretty good lately *knock on wood*. I went for a massage (that lady works wonders) and have been using lots of heat which is helping loads. I will be going back to the Massage Therapist on Monday for another treatment and this will happen every week and a half to two weeks until she can get my muscles to loosen up/calm down more. After that, we'll go once a month to maintain things.
Also, I go to get my AFOS fitted Wednesday and then to see my PT the following Wednesday to make sure they are fitting and to review my stretching program. She's not going to be happy with me as I really haven't been doing much other than standing and long sitting. A lot of the stretches my other PT was going to have me do involved my shoulders so, new PT may be doing some revamping. Lucky her!
Dad also went and looked at tie downs and ramps for the van. He found the ramp and is waiting on the DME regarding tie downs because since we have stow and go seating, there was only 3 spots they could find for tie downs and we need four. They have assured us they will work it out so this girl IS NOT going to stress. The other AWESOME thing is health insurance will cover the cost of the tie downs (or most of it, anyways) and the full cost of the ramp as long as my OT submits a requistion, which he'll probably do this week; he needs to know what we're getting first.
My MRI is Thursday as well, so I'm hoping and praying for good news with that.
Thank you to all who said prayers for the stair lift, van, or anything else. It is much appreciated and if you wouldn't mind, could you please pray for good results from the MRI and for continued progress in therapy as well as the homefront :).
Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. For everyone who asks receives, he who seeks finds; and to him who knocks, the door will be opened.
- Matthew 7:7-8
Sunday, April 17, 2011
Overbelieving
I was inspired by Rob , the writer of Fighting Monsters with Rubber Swords to write a post about overbelieving. In his post, he talks about how he feels like maybe he has lied to himself about how much his daughters disability would affect her life; he sees himself as someone who overbelieves in her. He goes on to say that he feels as though all the teachers and therapists who work with her should do the same. I whole heartedly agree.
I have had so many therapists and teachers who wrote me off as "she's never going to do that" and guess what? I did. Those people who lost belief in me just made me want to do it more to prove them wrong. There is still one paticular teacher who seems to not believe in me, but in the scheme of things she does not matter because she will just be another person I prove wrong. I have parents who overbelieve in me. I have two sisters who overbelieve in me. I have a brother who overbelieves in me. I have a brother-in-law (at least this is what we're going to call him) who overbelieves in me. I have an Occupational Therapist who overbelieves in me. Because of them I keep trying and working and progressing. They always let me try, even when the task seems crazy unacheiveable. They don't give up on me, even when I want to give up on myself. Overblieving has brought me places I never thought I'd be. So yes, I OVERBELIEVE in overbeliving :)
"A successful person is one who can lay a firm foundation with the bricks that others throw at him or her." ~David Brinkley
I have had so many therapists and teachers who wrote me off as "she's never going to do that" and guess what? I did. Those people who lost belief in me just made me want to do it more to prove them wrong. There is still one paticular teacher who seems to not believe in me, but in the scheme of things she does not matter because she will just be another person I prove wrong. I have parents who overbelieve in me. I have two sisters who overbelieve in me. I have a brother who overbelieves in me. I have a brother-in-law (at least this is what we're going to call him) who overbelieves in me. I have an Occupational Therapist who overbelieves in me. Because of them I keep trying and working and progressing. They always let me try, even when the task seems crazy unacheiveable. They don't give up on me, even when I want to give up on myself. Overblieving has brought me places I never thought I'd be. So yes, I OVERBELIEVE in overbeliving :)
"A successful person is one who can lay a firm foundation with the bricks that others throw at him or her." ~David Brinkley
Friday, April 15, 2011
Limits.
It's going to happen soon. Snap. and I feel bad for the poor soul who will have to bear the brunt of it. A bad day at school complicated by trying to schedule what feels like 1001 appointments= I want to crawl into a hole and hide for a while. Also, I would like to tell a few people jump off a fucking bridge.
You see, my OT sent me home with a sheet about adults with Spatial Learning Disabilities because we are doing graphing and the school does not seem to understand why this is a problem for me. Basically, it is a neurological problem that manifests itself as a visual problem. I took it to my math teacher. He was awesome about it and understood that it is a processing problem, not a visual problem. He also said he would discuss with the Resource Teacher what they could do to adapt the assignment. Well, brave sir, good luck with that insermountable task. I also shared this paper with the Resource Teacher. What. a. Fucking. Waste of. Life. She does not understand the problem however, she thinks she does so, she was mad because we were talking about how my mom, I and, my OT realize that graphing is a part of the cirriculum and has to be done. but it is a daunting task in which I learn very little because I can't process it. She took this to mean that my OT thought she didn't understand. Well, you don't. Anyways I assured her it was simply for informational purposes (which it wasn't. He knows she dosen't understand, but I wasn't going to say that) She got extremely defensive and informed me that she felt she should phone my OT because she felt he did not know about the training she had and that I was not telling him everything because they were adapting it. Wrong. They have me using a scribe which does not change the fact that I can't process it. They need to adapt it in a better/different way. So, she says to me, he's saying graphing isn't an appropriate activity. Well, yeah. What he's saying is, I have a brain injury and this problem is an effect of that and it is not fair to expect me to do something I am just not capable of doing. When you have a spaitial learning disability, you have problems with direction. So, when graphing, I don't always know whether I should go up/down, right/left. ect. The Resource Teacher said to me the other day "I don't think you understand." Wrong. If you said to me x=-1 I would know you would go to the left one from zero on the horizontal axis. However, if you tell me to go up/down/left/right, I do get easily confused. This just proves that she is the one who does not understand. She needs to accept that she does not always know and undertsand everything about me. My OT knows my problems better than her, the first time he explained it to her, he told her the way she understood things was in fact, incorrect. She does not know everything and she needs to understand that my OT is simply trying to do what is best for me and frankly, I don't give a shit if she likes what he does because it's not about her. She takes things far to personally. Plain and simple. I have a brain injury and therefore have some differrent struggles; I have limits. Maybe I should let her borrow some? :)
"As we advance in life we learn the limits of our abilities."- Henry Ford
You see, my OT sent me home with a sheet about adults with Spatial Learning Disabilities because we are doing graphing and the school does not seem to understand why this is a problem for me. Basically, it is a neurological problem that manifests itself as a visual problem. I took it to my math teacher. He was awesome about it and understood that it is a processing problem, not a visual problem. He also said he would discuss with the Resource Teacher what they could do to adapt the assignment. Well, brave sir, good luck with that insermountable task. I also shared this paper with the Resource Teacher. What. a. Fucking. Waste of. Life. She does not understand the problem however, she thinks she does so, she was mad because we were talking about how my mom, I and, my OT realize that graphing is a part of the cirriculum and has to be done. but it is a daunting task in which I learn very little because I can't process it. She took this to mean that my OT thought she didn't understand. Well, you don't. Anyways I assured her it was simply for informational purposes (which it wasn't. He knows she dosen't understand, but I wasn't going to say that) She got extremely defensive and informed me that she felt she should phone my OT because she felt he did not know about the training she had and that I was not telling him everything because they were adapting it. Wrong. They have me using a scribe which does not change the fact that I can't process it. They need to adapt it in a better/different way. So, she says to me, he's saying graphing isn't an appropriate activity. Well, yeah. What he's saying is, I have a brain injury and this problem is an effect of that and it is not fair to expect me to do something I am just not capable of doing. When you have a spaitial learning disability, you have problems with direction. So, when graphing, I don't always know whether I should go up/down, right/left. ect. The Resource Teacher said to me the other day "I don't think you understand." Wrong. If you said to me x=-1 I would know you would go to the left one from zero on the horizontal axis. However, if you tell me to go up/down/left/right, I do get easily confused. This just proves that she is the one who does not understand. She needs to accept that she does not always know and undertsand everything about me. My OT knows my problems better than her, the first time he explained it to her, he told her the way she understood things was in fact, incorrect. She does not know everything and she needs to understand that my OT is simply trying to do what is best for me and frankly, I don't give a shit if she likes what he does because it's not about her. She takes things far to personally. Plain and simple. I have a brain injury and therefore have some differrent struggles; I have limits. Maybe I should let her borrow some? :)
"As we advance in life we learn the limits of our abilities."- Henry Ford
Wednesday, April 13, 2011
Help Me or Get Out of My Way.
I'm shopping for a stair lift and running into really stupid people. Sorry for not putting that more delicately. See, we want to buy used because we will be moving soon (hopefully!) and so, we don't want to spend $3000 to put in a new stair lift or better yet $15,000 for a platform lift (eyes grow enormous). So, I've emailed a few people (my inbox is now filled with names of random people :) I ask them if it will fit on a straight staircase with six stairs. "I don't know" and "Maybe." are the responses I usually get and NO I won't hold it until you can contact the manufacturer to see if the lift will work on your stairs. Um, ok. So, I'm supposed to buy a piece of equipment for over a grand because it might work? Well, I guess you don't get my money and thanks for your time, you jerk. Contact manufacturer who tells me to contact a dealer in my local area. See, I don't think my dealer is going to want to tell me whether a stair lift I am buying from someone else is going to fit on my stairs. Just sayin'. It pisses me off that all this equipment I NEED is so expensive. They're not luxury items and I'm sorry I can't walk so, go ahead and make a shitload of money off me, money I really don't have. Government insurance has been a help with chairs (heavy, however), AFOs, and an outdoor lift which I will be forever grateful for, but private insurance sucks as far as covering costs of equipment in regards to my CP. Please pray we can get the situation with the stairlift and van worked out soon.
Today, my Resource Teacher was asking me about university and whether I would need to take math.
Me: Yes
Her: Why?
M: I need it for a BSc in Phsychology and I need a Stats course to get into OT school.
H: Oh..... Are you sure you should be an OT? I mean after last week and being told you're a verbal learner/person.
M: Yes.... (insert slightly irritated tone here)
Conversation goes on for a few more minutes with nothing of noteable importance.
H: Don't you think maybe you should pick a job where you were less physically restricted?
M: (Insert pissed off tone here): My OT told me I could go into Mental Health and it wouldn't be a physically demanding job
Her.: Do you think you could deal with people who were suicidal/depressed or other things like that?
Me: Yes....
H: Oh, you do....
Me: (completely pissed off now(: Yes, it'w what I want.
She goes on and on about how if I were sick for even a day that would be a disaster amd I would need to keep myself healthy because I already have so many health concerns *my shoulder is all, but whatever). I was just super mad because I feel like some people think I shouldn't be an OT because of my wheelchair, which is a lot of WHY I want to be an OT.
" By forgiving and choosing to move on, one takes the power back to morph it into positive energy."
J
Today, my Resource Teacher was asking me about university and whether I would need to take math.
Me: Yes
Her: Why?
M: I need it for a BSc in Phsychology and I need a Stats course to get into OT school.
H: Oh..... Are you sure you should be an OT? I mean after last week and being told you're a verbal learner/person.
M: Yes.... (insert slightly irritated tone here)
Conversation goes on for a few more minutes with nothing of noteable importance.
H: Don't you think maybe you should pick a job where you were less physically restricted?
M: (Insert pissed off tone here): My OT told me I could go into Mental Health and it wouldn't be a physically demanding job
Her.: Do you think you could deal with people who were suicidal/depressed or other things like that?
Me: Yes....
H: Oh, you do....
Me: (completely pissed off now(: Yes, it'w what I want.
She goes on and on about how if I were sick for even a day that would be a disaster amd I would need to keep myself healthy because I already have so many health concerns *my shoulder is all, but whatever). I was just super mad because I feel like some people think I shouldn't be an OT because of my wheelchair, which is a lot of WHY I want to be an OT.
" By forgiving and choosing to move on, one takes the power back to morph it into positive energy."
J
Monday, April 11, 2011
Stair Lifts, Ramps and AFOS!!!!!!!!!!!!!
Hey All!
I'm going to get my new AFOS casted tomorrow so that will be nice since mine have not felt "right" since I got them in October of 2008 and that makes it hard when using my standing frame.
We also started renos on the bathroom downstairs on Friday and they should be done this weekend ::). I miss my bath lift. The door was widened and a pocket door was installed. The shower is getting fixed so I can use the hand held shower instead of using a pitcher to dump water on my head. We also are installing a sink I can roll under. No more trouble rinsing out the sink after teeth brushing, not to mention I can actually SIT in my chair while brushing my teeth :). The next step is to find a used stair lift; we were going to put in a platform lift but, the problem is we are moving soon and the lift can not be moved to a new house easily and it is costly (like the cost of a new lift!)
When my power chair gets here, we will move the manual chair downstairs and I will spend all the time I am downstairs in my chair. Also, we need to figure out how we are going to transport the power chair in our van. As I said before, the plan is to purchase a ramp and tie down system.
I would really appreciate prayers that we can work out the stair lift and ramp situation before the arrival of the power chair and that we can do it in a cost-effective way.
I was also going to ask, if there is anyone who would like to share their blog (including Caringbridge), please do! I will be sure to create a Links section on my blog so my readers can check your blogs as well!
"Faith isn't faith until it's all you're holding on to"- Unknown
I'm going to get my new AFOS casted tomorrow so that will be nice since mine have not felt "right" since I got them in October of 2008 and that makes it hard when using my standing frame.
We also started renos on the bathroom downstairs on Friday and they should be done this weekend ::). I miss my bath lift. The door was widened and a pocket door was installed. The shower is getting fixed so I can use the hand held shower instead of using a pitcher to dump water on my head. We also are installing a sink I can roll under. No more trouble rinsing out the sink after teeth brushing, not to mention I can actually SIT in my chair while brushing my teeth :). The next step is to find a used stair lift; we were going to put in a platform lift but, the problem is we are moving soon and the lift can not be moved to a new house easily and it is costly (like the cost of a new lift!)
When my power chair gets here, we will move the manual chair downstairs and I will spend all the time I am downstairs in my chair. Also, we need to figure out how we are going to transport the power chair in our van. As I said before, the plan is to purchase a ramp and tie down system.
I would really appreciate prayers that we can work out the stair lift and ramp situation before the arrival of the power chair and that we can do it in a cost-effective way.
I was also going to ask, if there is anyone who would like to share their blog (including Caringbridge), please do! I will be sure to create a Links section on my blog so my readers can check your blogs as well!
"Faith isn't faith until it's all you're holding on to"- Unknown
Wednesday, April 6, 2011
Lost.
I saw ortho today and it started off bad. I went down to xray and had a student doing my xrays. I swear he took 13 of them. I went in at 8:30ish and it took until five after 9. He took xrays of the neck and shoulders. OT and mom were waiting for me when I came out and we headed back to Ortho. She was supposed to see us at 8:45 and we saw her at 10:20; it's a good thing OT kept his morning free. Ortho told us my xrays look good. She agreed with my OT that my right side is weaker than my left. She thinks I might have a small rotator cuff tear. If this is the case I will be put back into fairly intensive Physical Therapy. The other possiblity is, the xray did show that there is not very much space between the bones. She said it's possible I was just scrunched up. If this really is an issue, I will be referred to a Scope Surgeon and they will probably need to remove some bone. She is glad that I am getting a power chair and my OT told me I can expect to be in it for six months and maybe more if I require surgery. She told us that until we know what is wrong, I have to be super careful so no wheelchair skills for now. Yes, I cried after I left, I've had kind of a down day.
My OT sent a recquisition to have new AFOS made and after they are made I will go see my PT to make sure they are better and she will do a review at that time also.
We also saw the Educational Psychologist today and she told us exactly what we expected; my visual processing abilities are below average and my processing speed is way below normal, so, nothing new. She also told me I need to start eating breakfast and sleeping more. Ok. She told us to try protien shakes. I had one tonight, not a big fan. Does anybody have a reccomendation for a protein drink that tastes half decent?
Mom is taking me back to my GP as well to see if we can get something to help me sleep (pain overtakes that) and also something for my nerve pain as in the last few days, it has become really bad.
Again, if I could ask for prayers to get these issues resolved quickly so I can go back to normal life and sleep, that would be very much appreciated.
J
"Champions have the courage to keep turning the pages because they know a better chapter lies ahead."- Paula White.
My OT sent a recquisition to have new AFOS made and after they are made I will go see my PT to make sure they are better and she will do a review at that time also.
We also saw the Educational Psychologist today and she told us exactly what we expected; my visual processing abilities are below average and my processing speed is way below normal, so, nothing new. She also told me I need to start eating breakfast and sleeping more. Ok. She told us to try protien shakes. I had one tonight, not a big fan. Does anybody have a reccomendation for a protein drink that tastes half decent?
Mom is taking me back to my GP as well to see if we can get something to help me sleep (pain overtakes that) and also something for my nerve pain as in the last few days, it has become really bad.
Again, if I could ask for prayers to get these issues resolved quickly so I can go back to normal life and sleep, that would be very much appreciated.
J
"Champions have the courage to keep turning the pages because they know a better chapter lies ahead."- Paula White.
Tuesday, April 5, 2011
Please.
Hey All,
Just wanted to post and say that tomorrow is my appointment with my ortho doc and I'm not sure whether I'm excited or dreading it, to be honest. Part of the reason for that is that the hospital I go see her at is where my auntie passed away and where I spent, I'm sure, half my childhood getting surguries. Fun stuff. The other part of the dread being if I have to hear one more person say "I don't know." I think I might lose it.
These last few weeks have been bad. Really bad. The good days are becoming fewer and fewer and really far between. You see, I tried for a long time to hide how bad the pain was, I tried really hard and I just can't anymore. I need people to understand how bad the pain is so they can understand how badly I need something done about it, but people can't understand and think I am just complaining. They don't understand that I am as tired of talking about it as they are of hearing about it.
I have become extremely tired due to not sleeping at night and just the plain and simple fact that being in pain all the time is exhausting. I can't function at school because I'm so tired, I run on coffee just to stay awake and then come home and crash and end up not doing my homework. I'm snappy at people because of the pain and exhaustion and little things that I would let roll of my back make me lose my head.
So please, can you pray my doctor has an answer for me STAT.
I can handle whatever it is, but I need answers. If it's more PT, fine. If it's more OT, fine. If it's Botox, fine. If it's powe chair, fine. If it's anti-inflammitories, fine. If it's surgery, fine. The only thing I will not be fine with is her giving me some pain medication and saying "see you later." because pain medication is a mask, a bandaid.
"If you have health, you probably will be happy, and if you have health and happiness, you have all the wealth you need, even if it is not all you want." ~Elbert Hubbard
J
Just wanted to post and say that tomorrow is my appointment with my ortho doc and I'm not sure whether I'm excited or dreading it, to be honest. Part of the reason for that is that the hospital I go see her at is where my auntie passed away and where I spent, I'm sure, half my childhood getting surguries. Fun stuff. The other part of the dread being if I have to hear one more person say "I don't know." I think I might lose it.
These last few weeks have been bad. Really bad. The good days are becoming fewer and fewer and really far between. You see, I tried for a long time to hide how bad the pain was, I tried really hard and I just can't anymore. I need people to understand how bad the pain is so they can understand how badly I need something done about it, but people can't understand and think I am just complaining. They don't understand that I am as tired of talking about it as they are of hearing about it.
I have become extremely tired due to not sleeping at night and just the plain and simple fact that being in pain all the time is exhausting. I can't function at school because I'm so tired, I run on coffee just to stay awake and then come home and crash and end up not doing my homework. I'm snappy at people because of the pain and exhaustion and little things that I would let roll of my back make me lose my head.
So please, can you pray my doctor has an answer for me STAT.
I can handle whatever it is, but I need answers. If it's more PT, fine. If it's more OT, fine. If it's Botox, fine. If it's powe chair, fine. If it's anti-inflammitories, fine. If it's surgery, fine. The only thing I will not be fine with is her giving me some pain medication and saying "see you later." because pain medication is a mask, a bandaid.
"If you have health, you probably will be happy, and if you have health and happiness, you have all the wealth you need, even if it is not all you want." ~Elbert Hubbard
J
Sunday, April 3, 2011
March is Cerebral Palsy Month
So enjoy.
Dear Cerebral Palsy,
It has been almost 16 years since you made yourself known to my family and me; 16 years since we learned the terms brain injury, spasticity, tone, tendon lengthening, rhysotemy, Early Intervention, special needs, standing frame, wheelchair, Physical Therapy, Occupational Therapy and so many more.
Because of you I can't walk. Because of you I struggle with balance.. Because of you my muscles are always tight.. Because of you I now have a screwy shoulder. Because of you I have some seriously complex visual difficulties that I barely understand.
Does it make me mad at you? Sometimes. Do you make me sad? Sometimes. Do you make me frustrated? Usually on a daily basis.
But, because of you I am me. Because of you I have met some wonderful therapists and doctors that I will NEVER EVER be able to adequately thank for everything they have done. Because of you I am happy about every little step forward. Because of you I want to be an OT and I want to help people; I want to be the best person I can be despite my challenges.
Because of you I BELIEVE in miracles and have faith. Thank for all the disguised blessings you have brought into my life.
Your Grateful Owner.
Dear Cerebral Palsy,
It has been almost 16 years since you made yourself known to my family and me; 16 years since we learned the terms brain injury, spasticity, tone, tendon lengthening, rhysotemy, Early Intervention, special needs, standing frame, wheelchair, Physical Therapy, Occupational Therapy and so many more.
Because of you I can't walk. Because of you I struggle with balance.. Because of you my muscles are always tight.. Because of you I now have a screwy shoulder. Because of you I have some seriously complex visual difficulties that I barely understand.
Does it make me mad at you? Sometimes. Do you make me sad? Sometimes. Do you make me frustrated? Usually on a daily basis.
But, because of you I am me. Because of you I have met some wonderful therapists and doctors that I will NEVER EVER be able to adequately thank for everything they have done. Because of you I am happy about every little step forward. Because of you I want to be an OT and I want to help people; I want to be the best person I can be despite my challenges.
Because of you I BELIEVE in miracles and have faith. Thank for all the disguised blessings you have brought into my life.
Your Grateful Owner.
Friday, April 1, 2011
Mixed Emotions
Yesterday I got notified of approval for my power chair. Is that good? I think so, but, I don't know; it still makes me sad that I need one. Don't get me wrong, though, I'm grateful it worked out as quickly as it did. I'm sure as I use it more, my feelings will be changing. It should be here in 4-6 weeks.
After it comes, we will find out a bit more with my driving. The visual/prceptual/processing time is done, but my OT has yet to total up the score. He said his biggest concern is my processing time because as I've said before, it's a tad high. It is thought that this because my vision is based a lot on compensation but, my OT thinks maybe once I get comfortable with driving the power chair at higher speeds, my processing time could get better. For now, the plan is to buy a ramp for the van and not have it totally adapted because of not knowing whethrt I will be driving. If and when I start driving, the hope is I will be back in my manual chair and then I wouldn't need an adapted van. Plus, even if I still need the power chair, I want an adapted truck :).
I also got my luggage carrier yesterday. Best. Thing. Ever. It mounts near the footplate of my chair and it's just these two things that look like armrests. They fold up and (kind of) out of the way and they hold my laptop so I don't have to carry it anymore. The installation required rubber mallets, but nobody broke anything :).
The DME was also able to figure out how to move my wheelie bars higher so I can do curbs with them on and so they won't catch on crap. We thought they'd have to be cut, but after both he and my OT couldn't get the pin out to cut them, he figured out a better way, so that is awesome. We worked on curbs and stuff for a while in therapy with my OT putting up my wheelie bars and holding my chair with a transfer belt, which was fine but, my CP does effect my balance. Mix that with little core strength and you can understand why I feel better with the freedom to do curbs but, the safety of my wheelie bars to save my arse.
I go see my Ortho Doc on Wednesday and am super hopeful she can help me somehow. She had also mentioned when I saw her in clinic a few years ago, I would maybe need to have hamstring surgery, I think that's what it was anyways. My OT checked them out yesterday and said that they were not very tight. He asked if at the time I was standing. I wasn't. He said the standing I do may have just saved me from surgery. Wow. Standing really does do wonders; thanks Easystand!
I will be going to see the Physiatrist soon, hopefully. My OT was going to call him today and see what was going on with that because he would like me to have an EMG done to check the nerves out in my shoulder because my Ortho Doc can't do that.
I also need to get my splints adjusted again. Grrrrr. So, we will be going to get that done and this time PT will come with us. I got transferred to a new PT on Wednesday because my physio took a new position. The PT I work with now just happens to be my OTs wife and I've worked with her before, she's pretty awesome.
"The ability to laugh at life is right at the top, with love and communication, in the hierarchy of our needs. Humour has much to do with pain; it exaggerates the anxieties and absurdities we feel, so that we gain distance and through laughter, relief."- Davidson Sara
J
After it comes, we will find out a bit more with my driving. The visual/prceptual/processing time is done, but my OT has yet to total up the score. He said his biggest concern is my processing time because as I've said before, it's a tad high. It is thought that this because my vision is based a lot on compensation but, my OT thinks maybe once I get comfortable with driving the power chair at higher speeds, my processing time could get better. For now, the plan is to buy a ramp for the van and not have it totally adapted because of not knowing whethrt I will be driving. If and when I start driving, the hope is I will be back in my manual chair and then I wouldn't need an adapted van. Plus, even if I still need the power chair, I want an adapted truck :).
I also got my luggage carrier yesterday. Best. Thing. Ever. It mounts near the footplate of my chair and it's just these two things that look like armrests. They fold up and (kind of) out of the way and they hold my laptop so I don't have to carry it anymore. The installation required rubber mallets, but nobody broke anything :).
The DME was also able to figure out how to move my wheelie bars higher so I can do curbs with them on and so they won't catch on crap. We thought they'd have to be cut, but after both he and my OT couldn't get the pin out to cut them, he figured out a better way, so that is awesome. We worked on curbs and stuff for a while in therapy with my OT putting up my wheelie bars and holding my chair with a transfer belt, which was fine but, my CP does effect my balance. Mix that with little core strength and you can understand why I feel better with the freedom to do curbs but, the safety of my wheelie bars to save my arse.
I go see my Ortho Doc on Wednesday and am super hopeful she can help me somehow. She had also mentioned when I saw her in clinic a few years ago, I would maybe need to have hamstring surgery, I think that's what it was anyways. My OT checked them out yesterday and said that they were not very tight. He asked if at the time I was standing. I wasn't. He said the standing I do may have just saved me from surgery. Wow. Standing really does do wonders; thanks Easystand!
I will be going to see the Physiatrist soon, hopefully. My OT was going to call him today and see what was going on with that because he would like me to have an EMG done to check the nerves out in my shoulder because my Ortho Doc can't do that.
I also need to get my splints adjusted again. Grrrrr. So, we will be going to get that done and this time PT will come with us. I got transferred to a new PT on Wednesday because my physio took a new position. The PT I work with now just happens to be my OTs wife and I've worked with her before, she's pretty awesome.
"The ability to laugh at life is right at the top, with love and communication, in the hierarchy of our needs. Humour has much to do with pain; it exaggerates the anxieties and absurdities we feel, so that we gain distance and through laughter, relief."- Davidson Sara
J
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