Thankful

Hey Everybody,

My pain level is through the roof so excuse any typos.  I am going to see my Orthopedic Surgeon on April 6th now; we changed the appointment so my OT could come with us. 

I updated today because therapy brought happy tears (and they're coming back as I type).  First off, I am going to post the essay I wrote for a contest I happened to win:




There are people who make a difference in the world everyday; they provide life-changing abilities and skills to people when they need them the most, people like Occupational Therapists. This is why being an Occupational Therapist (OT) is my dream career. I was born with Cerebral Palsy. At a very young age I began Physical and Occupational Therapy. Occupational Therapy has always been my favorite kind of therapy; it's where I got to do all the fun stuff like playing on the computer. Occupational Therapy made my education possible. I did all that work on the computer and worked on writing so I could be prepared for school. My parents were told I would never even be able to pick up a pencil and write my name and I am now only a few months away from graduating high school, this is because my Occupational Therapist found assistive technology that would work for me and allow me to have a successful education.


Now, at the age of 17, I have just started back at OT but, for a different purpose. I am now learning life skills like how to cook, go up and down curbs, and so many other things that will allow me to be an independent, contributing member of society.




In the two sessions I have been to, I have already learned to do wheelies and have started practicing curbs. This is because my OT has worked very hard to find strategies that work for me. He will often spend an extra half hour to 45 minutes with me just so I can get some practice in. He is always enthusiastic and encouraging which, in turn, makes me want to work harder. I have been given the chance to be independent through his help and I will jump at that.



I want to be an Occupational Therapist because I know what it's like to want to be as independent as possible and feel like you don't have the proper resources. I want to be able to help people that will be in the shoes I am in now. I want to give my patients what my OT has given me; hope, faith, encouragement, and the chance to have a fulfilling life in which I can be independent.

So, my OT got a hold of this essay and read it and said congratulations and all that jazz and then today we were talking about school and he asked me what I wanted to do in university. I told him I still wanted to be an OT but, that I was unsure and he asked why.  I told him I felt as though I might struggle with certain aspects of the job because when I'm working with him, I struggle with some stuff (this is why I GO to therapy hahaha) and so, I have been worried about how I would help my clients if I struggle with certain tasks and he asked what kind of tasks I was thinking about. Things like lifting and walking, physical tasks could be problematic    My OT told me that was a good question, but that I would be able to work in a mental health setting or other areas.  I told him I don't want my chair to get in the way of what I truly want to do because I KNOW I will regret it, speaking from experience.  I also told him that I think that for my patients it would be neat to have an OT in a wheelchair because I can understand their challenges better than a "walking" OT can and he agreed.   He told me that he will be excited to see it happen.  Having his support has reaffirmed that I know I can do it; it will be hard, but I know it will be so worth it in the end.   You might ask why I cry over this, but what you need to understand is, so many therapists have told me I'm not going to do things, so this is a more than welcome change of tune for me.

I also arranged to take all my classes online next year, so I can stay at home as I have been missing A LOT of school due to shoulder pain.  Hopefully we can get it under control by then, but I feel I will do better if I can work from home without all the fighting and pain in ass stuff going to school seems to require on a day-to-day basis; I'm running out of motivation to keep fighting, so this is my solution.  It will be interesting to take Math C30, Physics 20/30, and Chemistry 30. Doesn't it sound like fun? :)  Hopefully they will offer Physics 20 online as the last time I checked the list of tentative courses, Physics 20 was not there.  I MIGHT be able to take 30 without 20, but I think even if this was an option, I would be making a hard subject harder.

I've decided I will sing off with a different quote each time I blog depending on what I have written, just to change it up a bit.

J

"Only those who dare to fail greatly can ever achieve greatly." -Bobby Kennedy

Life is Crazy

Sorry for the delay in updating.  Things are fairly decent on my end.  My standing frame is now offically at school and it's working out quite well. I am more alert and in less pain through the day.  

Speaking of shoulders, I am demoing a power chair until tonorrow afternoon and then my OT will be trying to get me one until we can figure out what is up with my shoulder.  At first, I told him he was nuts and there was no way I was giving up my hot wheels for a POWER CHAIR, but after a trip to Edmonton and realizing my arms just can't take it anymore, I am willing to use one, at least part time.   He is hopeful that once we get my shoulders under control, I will be able to return to my manual chair. I seriously hope he's right.

I am also seeing my Orthopedic doctor on April 4th so, hopefully we can get things figured out and setteled down.

Please know that if I don't update as often, it is usually "no news is good news." and I am also having trouble keeping up with school, so most of my time is spent doing homework.

At the side of my blog, I have added some music videos if anyone wants to take a look.

Lastly, I would like to ask for prayers for Mark Fehr.  http://www.caringbridge.org/visit/markfehr

Thanks.

"He's not jaded or bitter, he's gonna leave the givin' up for the quitters."

There Will No Longer Be a Shoe Dillemma

I updated for a positive reason; I have finally learned to tie my shoes!! I am longer in a situation where I need to buy velcros or slip ons :). Deadly!

On a side note, can I ask for prayers for my OT and his family? I don't feel comfortable sharing why as I am not sure how he would feel about me blogging personal details, but please keep him and his family in your prayers.

"He's not jaded or bitter, he's gonna leave the givin' up for the quitters."

J

Pain, Pain Go AWAY!

Shoulder pain is my worst enemy right now. OT did a shoulder assessment yesterday and seems to think I have a damaged rotator cuff. Yikes! He thinks I may also have pinched nerve because I am getting q lot of sharp, burning/tingling pain on top of my muscle pain.  He has been in contact with my orthopedic doctor's secretary and apparently because I haven't seen her in two years, she may have closed my file.  I find that sort of strange because I was supposed to see her in September and they never called to schedule anything and because at the time, there really was no need to see her, we   never followed up.  If the case file has been closed, I will referred to her again because my OT wants her to check out the shoulder problems as well as my toe.  I was going to see a PT yesterday but, he was busy and after my shoulder assessment, my OT believes we should see Ortho before we proceed with seeing a PT because if there is damage in the shoulder then PT could actually make that damage worse.   He will also be contacting my family doctor and requesting another ultrasound be done as it has been almost a year since I had one and he thinks that the injury may have progressed and so, now something may show up on the ultrasound.  The ortho doctor may also refer me to a neurologist for the nerve pain, we'll see.  I am also supposed to be seeing a .physiatrist (rehab doctor) in regards to my toe because it's still hurting and it seems like maybe the tendons are part of the problem as well as tone so, my OT thinks I might benefit from Botox.  At that time, we will talk to the physiatrist about my shoulder as well ; we want all the professionals on the same page.  I had to come home from school early today because I was in so much pain that I needed to lay down/stand up so, if you wouldn't mind, could you please pray that I get in to see the phsyyiatrist and orthopedic doctor soon and that they can find the problem and solution.

I'm going to Edmonton for a few days and I'm excited!   We're going to go shopping and to galaxy land and stuff so that will be cool. They have a Tim Hortons in the mall which is superb :)! Then, there's Ikea.  I'm supposed to be getting a new bed, but hopefully mom doesn't make us stay there TO long.

Hope everyone has a fantastic break!

" He's not jaded or bitter, he's gonna leave the givn' up for the quitters."

J

Good Day

Hey guys,

This will be quick because I have to eat supper and do homework but.......... THE STANDING FRAME IS GOING TO SCHOOL!!! Yes, you read that right.  OT stood very firm about why the standing frame needed to be at school and his effort paid off.  My table with all my AT equipment will be moved out of the Resource room and I will just have my laptop because most of the AT I have, I no longer use and it is simply taking up space.  The standing frame will be delivered to school after the February break so that I can use it over the break.  I'll update again and go into more derail because there were several other issues that were discussed and some were resolved but, my supper awaits.

Thankful for awesome therapists,

J

"He's not jaded or bitter. He's gonna leave the givin' up for the quitters."

Tomorrow's the Big Day

Hey everyone,

I have LOTS to update on.  First off, tomorrow is the big meeting and my stress about it is brewing .  I'm keeping my fingers cross that the schools eyes will be opened and maybe just maybe they can exhibit some understanding.   All I told them when I said we wanted to have a meeting was that in OT we were coming up with goals and some of them related to school so we needed to all get together and discuss them; I said nothing about the standing frame directly.  Anyways, wish me luck :)!

Next off, I actually haven't been able to get into my standing frame because of my toes.  It is believed I have something called Hammer Toe. It is not uncommon in people with CP and it has been causing me a great deal of pain in my feet and toes.  I have always had a problem with my toes overlapping.  We tried using toe spacers but, they never stay in place.  Mom is taking me to the doctor and she thinks they will probably splint my toes with a Hammer Toe Splint.  I also wear AFOS and so I'm wondering if the doctor will send me to see my orthopedist, maybe he can rig something up that serves as both an AFO and a Hammer Toe Splint.  That would probably mean having to get approval for a new pair of AFOS, we'll see.  Has anyone experienced this problem (Hammer Toe, Hammer Toe Splint interfering with AFO)?

Lastly, I had mentioned we were doing some perceptual testing in OT.  The reason for that is that because of my CP I have some visual difficulties that will affect whether or not I get to drive.  The first round of testing didn't go well but, it didn't go horribly.  My processing time was in  the range of severally impaired.  That could get ugly when driving. The second round was bad, p, and more bad.  First off, my therapist forgot he was supposed to see me so I ended up waiting for 45 minutes and then ended up getting only 45 minutes of therapy instead of an hour ( he apologized profusely by the way)  Anyways, I had to put together this stupid house figure together so it looked exactly like his. I had a supper hard time with that, partially because of my fine motor skills.  Pieces kept falling on the floor and it was just NOT a good time.  Then I had to do this thing where he had a picture of a shape and I had to copy it with stamps.  Again, I had a very hard time and ended up getting fairly frustrated.  At the end he says well I was feeling pretty positive about you being able to drive but now, I'd be concerned about you driving.  Well that's awesome, thanks.  I tried to explain to him how I have been preparing for not being able to drive but, I always held onto the hope that my instincts and what other people were telling me about not being able to drive were wrong.; until the testing says it's real, I can stay in my own happy little world.  Let me tell you something, preparing myself for it never made it any easier to swallow.  Anyways, I left therapy very upset; there were tears, there was anger, there was I'm never going back there. Ever. Then there was lots more anger and hurt.  Long story short, I ended up going back and finishing the testing and actually did very well, much better than my OT was expecting (according to him, not me.)  This time I ended up driving a scooter.  At the end he redid the processing test I mentioned earlier  because he said that while I was driving the scooter, my processing time was not nearly as high as when he did the testing on paper so, he was somewhat confused as was I.   I went from well over a minute to 38 and 48 seconds which is a mild to moderate impairment.(only 8 seconds into moderate)  .  Apparently, sleep, stress, and lots of other factors can affect the results of the test so I may or may not get to drive.  

"He's not jaded or bitter, he's gonna leave the givin' up for the quitters."

Keep Rolling On,

J

It's a Love Hate Thing

I posted this list in a forum and thought I would share.


I hate that I am sitting here typing a whole list of things I hate
I hate that my house is not wheelchair accessible so I have to crawl around
I hate that doctors cut nerves in my back to reduce tone and now I can't tell when I have to piss until I REALLY have to go
I hate that insurance will cover next to nothing for me because I was born this way
I hate that people assume that I have it easier than someone who lost there ability to walk later in life. Different, yes. Easier, no.
I hate that I don't get as much therapy as I feel I need/could benefit from
I hate that I still need my wheelie bars
I hate that so many doctors, therapists, and other professionals have let me down
I hate that my family and I have to fight for everything I need
I hate that my shoulder hurts all the time
I hate that my school will not accomadate my scooter so I can give my shoulder a break
I hate that my school will not accomadate my standing frame for pain mangement because it can be used at home
I hate that everything I need costs so fu%$cking much
I hate that my OT has to go have a meeting with my Resource teacher to explain to her why my stander needs to be at school
I hate that I could have moved to a school where the stander could have been if the Resource teacher had not lied and said the school was doing everything they could to accomadate me
I hate that this list makes me cry
I hate that there is a kid with a brain injury in my school who likes to throw it in my face that I will never walk and he will among other things and that people say that it's ok that he does that because he has a brain injury. (not dissing people with brain injuries)
I hate that this shit is what I have to worry about at 17 years old

I love that I was blessed enough to have a family member provide me with the money to buy a standing frame and awesome pink TiLite ZRA
I love that I get that one hour of OT per week
I love that I finally have a therapist who cares about the job he does
I love that he has never once told me I am not going to do something and been nothing but encouraging which is a lot more than I can say for a lot of therapists and doctors previous
I love that I function at the level I do
I love that I will be fully independent eventually
I love that this chair has made me who I am
I love that I am more compassionate and less judgemental because of the chair
I love that this chair has made me want to be an OT or ST or Social Worker so I can help people. There's no one better than someone who has been through it
I love that I have the faith to believe that I am the way I am for a reason and that my being in the chair has a purpose It sounds corny but it's what gets me through the day sometimes

Gotta roll.  Have perceptual testing in OT tomorrow and it isn't gonna go very well if I don't get some shut eye.

As always,


He's not jaded or bitter, he's gonna leave the givin' up for the quitters


J