Goal #4 - Check

Today I accomplished my first goal on my "30 by 30" list.

#4 - Donate my hair to a cause.

Well I did it!  I chopped of 9 inches to donate to Pantene's Beautiful Lengths program.  I'm still adjusting to my missing hair, but I'm hoping it will be much more manageable and help me on my way to fulfilling #7 - being able to style my own hair.  

Plus it's a lot less hair to dry after pool therapy, which will help me from freezing to death this December, brrrr!

30 by 30

With my birthday sneaking up on me, I decided to use 2012 and my big 30 to set some serious goals.

Obviously my biggest goal is to walk.
To kick this wheelchair to the curb.

So this is my list of 30 by 30. Some are long term goals that will take lots of practice and work, others are moments that I would have never thought to think twice about before, maybe even taken for granted.

All are milestones and accomplishments, 30 small steps closer to my ultimate goal.  

1.  Be able to dress 100% by myself
2.  Have my own vehicle
3.  Drive
4.  Donate my hair to a cause
5. Sing in church
6. Cook an entire meal myself
7. Be able to style my hair
8. Buy new shoes that I can put on myself
9. Sleep in a regular bed
10. Be able to roll
11. Go on a weekend getaway
12. Change my kids diaper
13. Take my kids to get a happy meal or ice cream.
14. Make cookies with my kids
15. Be able to do my own laundry
16. Be able to stand
17. Find a way to do service for someone
18. Wear "normal" clothes (not sweats everyday)
19. Lose at least 20 pounds
20. Lift weights on a regular basis
21. Do a transfer to my wheelchair from my bed without a transfer board
22. Be able to transfer into a car
23. Go see a movie
24. Be able to transfer to a toilet
25. Be able to stay alone for 24 hours
26. To get from laying to sitting
27. To crawl
28. To do a depression lift (a real one, with my butt clearing the ground)
29. Be able to lean forward and sit back up without using my arms
30. To get rid of my leg straps

30 goals.  

I may not achieve them all, 
but I'll achieve all I can.

Learning to Live Life Again

Most of you know that I have remained pretty positive through this whole ordeal. While I still feel positive, my time in rehab is definitely made me more excited about finding independence again. Everyday there something new we are trying, or building, and conquering.

Having 4 to 5 hours of therapy, not including the therapy I do with nursing or on my own, leaves my energy levels low by the end of the night, so blogging has been neglected. There are so many exciting things going on, I'll try not to make this post too long but I want to update the things I have learned.

A few days after I got here my therapist, Dr., and I wanted to look into my diagnosis more. We are having a hard time getting a solid diagnosis. While my original diagnosis was Guillain-Barré, the symptoms I have now correlate more wish an issue directly relating my spinal cord not my peripheral nervous system.  They are unsure if my original diagnosis was completely wrong or is it actually has the balls into something else somewhere along the way.  Right now we are also looking into the possibility of transverse myelitis.

A couple weeks after I was here I got invited to start doing recreational therapy in addition to minority schedule 3 hours.  Rec therapy is a lot of fun. I been able to pool therapy a couple times as well as crafts, visits to downtown, and an outdoor arm bike.  It's been fun being able to dabble in things I wasn't willing to spend the money to figure out if I can do well or not. It's given me fun activities to do on my own as well. The rec therapists are fun and lighthearted which make spending time with them enjoyable.

Occupational therapy has helped me with a lot of adaptive tools. I have a few things to help me take care of my own personal needs. I have adaptive cooking utensils, a new cutting board, a tray that fits on my wheelchair, and my new splint (which I lovingly refer to as my terminator arm). We have also talked about possibly getting a van that I can either be a passenger or a driver in. I was a little hesitant about the thought of driving again, but I've seen a van this other patient drives, he's a high spinal cord injury, with very little movement in his arms and he's driving. The more and more I think about it I think in a couple of years my children can put themselves in car seats and we would be able to go do things outside the home more often.  One thought to ponder, I am sure a van like that will probably cost a pretty penny. Plus if it's set up for me to drive, obviously I will have to do all the driving. It's definitely something I've been thinking about a lot more.

Physical therapy is definitely the toughest part of my day. We've primarily been focusing on transferring myself using a slide board, which I can almost do independently which makes me excited. Also doing a lot of strengthening, and I can almost get from my back to a sitting position with minimal help. Today for physical therapy I tested power wheelchairs. While there's this small voice inside of me that excited for independence (possibly driving again), more opportunities, and being able to get around easier, there's also the small devil standing on my shoulder saying I've given in. I want to make sure just as I'm doing something that makes it easier, but I'm not still trying to progress to the most liability.

Although days are busy and tiring I'm truly thankful for all the people who work here. My CNA's and nursing staff, therapists, and doctors have definitely helped my state be as enjoyable as it could be that have really helped me seeing progress.

I'm thankful for the time I've been able to spend here, but the countdown is on.

Less than two weeks and I'll be headed home again.

One Week Behind Me

Well I have officially been here one week. So far it has been very good. I'm so impressed with everyone that works here. Their attitudes and knowledge are very impressive.

In physical therapy, we're working a lot on independent slide board transfers as well as balance and overall strengthening. Within a week I already feel a lot more confident with my transferring, and am hopeful that if I will have it down.

In occupational therapy, we are working on strengthening, adaptive tools, and a new hand splint that will help me pinch between my fingers and thumb better. This morning I worked on independent dressing and it was so hard I can't even explain it. I was so physically exhausted after a half-hour of wiggling around, trying to get my clothes off and on, reaching to my toes trying to push them over my feet, and him leaning forwards and backwards. I was thankful they came at seven in the morning so I could take the rest before getting up for the rest of my days.

I'm also working on bowel and bladder training ( is that TMI?).  The only reason I bring this up is because this is seriously as physically exhausting as physical therapy and occupational therapy.  Even more it's probably the most emotionally draining part.

I also found out today they would like me to stay for six more weeks.
I will more than likely be discharged on October 4.

Rehab 101

I discovered today while chatting with the other patients that their many similarities between rehab and prison.

This does not in any way imply that I do not want to be here, or do I not appreciate what I'm going to be able to learn while I'm here, more just funny quirks comparing the two.

1.  We all plot during meals about how we can escape.

Today we decided that we would create a distraction so that one of the other ladies could make a run for it. Since we outnumbered the help, we decided that if we split up and each went in different directions she could make it to the elevators.  Of course, she would have to ditch her wristband which is like a tracking device.

2.  After meals we all are escorted back to our room.

After we have meals, one of the CNA's pushes us back to our rooms where we wait until the next person comes to get us. If you head for the door, you are immediately intercepted by someone.

3.  Typically, the most exciting part of the day is
when we get to work out.

Therapy sessions are the only time besides meal time that we are able to get out of our room.  It's all about getting stronger, and trying to impress the person next to you with your abilities.

4. There are gangs.

We each sit at our designated tables and rarely converse with the other tables. while here it is more split up by men and women.

5. Meals can be very questionable.

While not all meals have been bad since I got here, I won't lie, I wish there was a hamburger man like on the movie ' The Longest Yard'.  There are days, I would drop a pretty penny for a hamburger pulled out of the old man's pants.

6. Our primary conversation, is when we get released.


One lady is released tomorrow and you could see the envious looks on everyone's faces. Another lady got her release date today, and with good behavior, will be going home next Friday.

The Test

Growing up, I have heard this song more than 100 times.  Now this song rings true even more.  If you look at the world there is so many people who struggle each day. I think we all ask the question, "why"?  It would be very easy to walk the path of sorrow and self-pity, but instead of focusing on what's wrong with the world, I see so many people who use their trials to lift others and be inspiring.  Thanks to the internet, blogs, and emails, there are beautiful people out there who focus on the good and make the world a little more tolerable. I have definitely used this time to find peace with my situation. It's true, we weren't sent hear to live a life of perfect ease. We were sent here to deal with trials and to be tested. To be forced to choose to walk the path of either the darkness, sorrow, and self-pity, or to choose light, joy, and peace. Each choice is always around, there for our taking, it's what we choose to see that will define our life. Everybody deserves some bad days still, but it truly is our decision to make it one bad day, not a bad life. It's true, I might not understand why this happened, and just because I have this large trial, doesn't make me think that there still won't be more ahead. Like the words of this song said though, "but didn't he say we could live with him forever more, well and whole, if we but patiently endure."  When things are hard, it's definitely hard to remain faithful, but these experiences truly are to strengthen us and help us grow, to learn, to love, and to appreciate the good that truly is all around. Through this trial I have been blessed to meet many wonderful new friends, to spend quality time with my boys and family, to be exposed to so many acts of kind service, feel the love of so many prayers, and to feel the constant support of everyone around me, and for so many things like this, I am grateful for my tests.

Braces Update

Sorry I have been such a slacker at updating this blog. Since I use a voice program to update it I preferred to do it when no one is in the house, except when I don't have my headset I'm pretty much stuck with not doing it at all. So here's what's going on, and what has happened last couple months.

On May 11, I got my full leg braces. The first time I tried them on, and stood, was in the orthopedics office. My dad, my physical therapist, and the orthopedist all helped me stand.  While it definitely was not easy, it went better than I had expected. I had nightmares for days before we went to get my braces that as soon as I stood upright, I passed out, then fell flat to the ground. Luckily, that was not the case. I did get dizzy, but if I leaned back against the table and laid my head on my dad's shoulder it was enough for me to recover before I could stand again. Everything went well at the orthopedics office, so we took the braces and went home and started therapy that very week. The first few times I stood, I stood in front of the kitchen sink. My hip flexor muscles are so tight that I had to stand with my back arched in order to stay up, or I was thrown forward.  Every time though, I was able to stand up straighter and straighter.  Standing in front of the sink even got a little too easy, so we now stand in front of my bed, and I use my dad to help balance me. Since my hands don't work, I'm unable to use a walker for balance. I'm hoping this week to get a platform walker, that will allow me to balance myself with my arms bent and resting on a platform, and my shoulders will able to do more of the work. We have also upped my sessions from twice a week to three times a week.  The biggest thing, is that I have actually taken a few steps. While I don't downplay my accomplishment, I don't consider them real steps, since it took me and my physical therapist and my dad to stay upright while I did them.  I do take credit for kicking my legs forward. It's definitely happen a lot quicker than I ever thought it would since getting my braces.

I also am looking into possibly going to Boise, to The Elks. It's the largest rehab facility in Idaho, and they have inpatient rehab for all kinds of people. They train spinal cord injuries how to be more independent. Although I don't have a spinal cord injury, my recovery is lightly based off the same rehab. Where I have progressed quicker than I imagined with my leg braces, I have discussed options with my therapist to thinks that might be a good idea.  If I get approved I will go to Boise for a few weeks to do more extensive therapy. I would be required to do a minimum of three hours, five days a week, and with that much therapy I hope that my progress would be much quicker. Hopefully I will know soon if I am approved, and when I can go to Boise.

Leg Braces

Yesterday I went to Idaho Falls and was measured for leg braces.  It was quite the experience!  After being stripped to my unders, they cast both my legs from hip to toes.  Then they cut the cast off and will use those to build my braces.  Now, I wait.  Approximately two weeks.  Then when I got to try them on, I will get to stand.  It will be my first complete upright position in 16 months!  It will be between parallel bars and help, but it will be a milestone.  

My  braces will look similar to this but will be dark gray.

KAFO's

I go to the doctor again in a couple of weeks for a checkup. I'm so excited to go because I feel like I have made some good progress. Also, when I go, I will get new orders written to help my progress ... I hope. My PT and I have been talking, and we think it's time to look into full leg braces. This will help me with standing and eventually walking. Since it's something I will need for a long time more than likely, we decided to just go for the braces and see what we can accomplish. I know they're still a little ways off since I will have to be fitted for them and they will have to be made, but my heart seriously flutters every time I think that I may be standing on my own again. Not only do I feel excitement, but I feel at peace that this is the right step to be taking. I know it will not be easy, and I know it doesn't mean I will be walking shortly, but it's something new and I feel like it's finally a good step in the right direction.

Crawling ... or dragging!

I have been a little more tired than usual the last couple weeks, I'm hoping it's a healing spurt.  I remember when I was in the women's center, shortly before Talon was born, there were days for a couple of weeks I could not get enough sleep to save my life. If I take a nap during the day, that I'm up at night, if I don't, I'm exhausted all day but I sleep at night. It's a vicious cycle.

Yesterday after taking a nap, I was laying on my stomach. I decided to see if I was able to army crawl. I knew my legs were going to cooperate, but I wondered if I could shimmy and scoot forward any distance at all.  I totally did it! I went about 3 to 4 feet, and it took me about 10 to 15 minutes, but I did it. I probably could have scooted better and further but my body is such dead weight that my shirt kept pulling me tighter and tighter. Then I had to try to rock side to side to loosen my shirt up. And oh boy, do I have the rug burns to prove it. I think I would like to find something sticky for my arms, like a jar opening pad, and see if I'm able to scoot better on a slick surface like the kitchen floor. I think I'll let my elbows heal up before I try it again though. It was definitely exciting to feel that I moved any distance on my own. I will definitely keep working on that.  Who knows, maybe this will be the beginning of some more movement on my part. I guess only time will tell.

I know I have been a slacker and blogging. I just feel like I'm blogging about these things that are so tiny, and although their exciting I just wish there was bigger things to report.  Like it's really so cool that I can straighten my leg a half of an inch.  We're doing so much in physical therapy right now. It's fun to see the things I can do now that I couldn't even do a month ago. I can tall kneel in front of a rolled up egg crate, I can scoot backwards while sitting, although it's very hard and I make very little distance.  My physical therapist suggested, if it's possible, that once I start working on standing and other things closer to walking, that I may want to look into going to a rehab facility again. It is still a ways away, but it's something to look forward to.  I feel she wouldn't even suggest that if it wasn't something she knew was going to come eventually.

Left Legs Turn

I am glad that my left leg finally jumped on the bandwagon. While doing therapy yesterday, my left leg was slightly bent, and I was able to kick it up. It was great to feel my whole leg contract to do the motion. It's also a good accomplishment because the movement is not only hard, but I have to fight gravity to do it. I feel strength in my legs more and more every day. I can't wait until I can do more and more things on my own.

Popping and Shopping

I feel like things are still progressing at a steady rate. I have had more good signs that things are continually progressing. My lower abs around my pelvic region have been contracting, which hopefully will help me get some more strength in my core.  I have also had a few more popping noises going on throughout therapy. My left hip has made a couple large popping noises, which leaves it incredibly uncomfortable. Luckily, we have found some stretches that help put my hip back into place. Also popping quite regularly are my shoulders and  wrists. My therapist say this is pretty normal since I don't have strong enough muscle to hold my joints into place correctly.

I have also enjoyed shopping and browsing online for OT supplies. There are so many crazy contraptions out there. I never thought that I could spend 2 to 3 hours just browsing around looking for things to help me. I was checking out hand controls recently. If my hands get working, temporarily I can use hand controls drive a vehicle. Now don't get nervous that I'll be on the road anytime soon, this is still a long ways away. It's nice to know though that there are still options out there.

I also have been looking into going back to school. I would love to take some online classes, and work closer towards getting a degree, the biggest hassle now is deciding what to go into. How much I recover will definitely play in the deciding factor, and since that is unknown it makes it even tougher. I have a couple years under my belt so I don't have a lot of free classes I can take before I will have to decide on a degree. It's something I'm still working on.

2011

Things are still moving fairly slowly. I do still have that little bit of movement in my left leg. While lying on my back if someone stabilizes my eight goals and my knees are bent, I can also hold my legs up in the air. Of course the muscles get tired and eventually they fall but it's a start.

The spasms are getting stronger every day. When my abs spasm I almost can't catch my breath sometimes. I also think that the new pressure in my stomach as causing to have some appetite issues. My legs can spasm so hard they stick straight out and actually lift off the ground. There also contracting and bending. It's almost as if they are learning when to bend and went to straighten, sometimes. The good thing about them bending and straightening is that means that both the front and the back muscles are working.my tricep in my right arm is finally starting to trigger to. Once I build up some strength this will be enormously beneficial. It will allow me to slide or transfer on my own.

I have a new brace that I was supposed to wear on my left arm. The joint between my wrist and my first thumb knuckle is awfully tender when bumped wrong.  They call it a De Quervains. They aren't 100% sure what causes it, but they believe it's an overuse of my thumb. This is pretty likely since my son was the first finger I can use to push. I use it every day on the computer, I use it to control my bed, so it's definitely being worked more than my other fingers are.

The pain in my right hip has come back. I really cannot figure out any rhyme or reason to why it comes and goes. It's not unbearable, but it's definitely not comfortable. Things are definitely coming along. With the new year it's deftly made me make some resolutions I hope to be able to accomplish by the end of the year.

1. To transfer on my own.

2.  To be able to roll over from my back to my stomach.

3. To be able to crawl.

4. To be independent in my wheelchair.

5. To walk.

Although most of these goals depend on how quickly my body continues to heal, my resolution is really more to do everything in my power to make sure that they are accomplished. It is up to me to work hard, keep trying new things, and to not give up. 2011 has my name written all over it!