Getting Used To It is Not an Option

It seems like the one thing that all people with a TBI can agree on, is that there are good days and bad days, mentally and physically. Movement, even agility, is almost easy on good days.; hope is limitless. Then there are other days where my limbs feel as though they weigh 1000 pounds each, and movement is almost painfully hard and my balance is so off that I can barely stand still when I want, and I am never going to make progress. I will say, my bad days aren't as bad, and there are fewer of them.

Sometimes, I wonder if I am just used to the bad days so they don't seem as hard.

I don't want to be used to this at all. I don't want to get used to not feeling anything with my right hand. I don't if there is a know a rehab that fixes that. Is there some voodoo that I can do to get my nerves to heal? Please tell me if there is. I refuse to get used to the fact that when I lay down I get so dizzy that my stomach hurts and turns. They said I don't have vertigo, so what is it? How do I make it stop? I won't get used to the fact that I can barely walk in a straight line and move without being awkward.

I'm terrified of someday accepting this as normal. I can't believe that this is all I can do. I know it's been 3 years. That seems like an awful long time to try and make this all a thing of the past. I work pretty hard to try and make this all go away, and sometimes, it doesn't seem like anything is happening. Until something does happen..

These days it's nothing big. Recently my improvements aren't as noticeable. In the past I'd celebrate tying my shoe, or walking 1000 yards, trying my shoe, or getting rid of my wheel chair. Now the improvements are much smaller. But I notice (usually; it's nice when someone points it out to me). It might just be gripping something better, or noticing that my balance is better while reaching above my head. Those little things make me continue my hard work.  And so I walk to the gym again, or type on my big embarrassing key board.

This process is BY FAR the slowest, most frustrating, tedious, pain in the ass thing I have EVER done. But I REFUSE to get used to it, or just deal with it, or let it win. I might have bad days once in a while but never do I think that I have a bad life. I need to keep that in mind when I do have a bad day, because those are inevitable.

3 years!!

It's my 3 year anniversary since my brain surgery! My right side is 3 years old. Woohoo! Goin' strong!

"There's a crack in everything. That's how the light gets in."

Some Days Ya Gotta Dance

Who says therapy can't be fun?

It has been ALMOST 3 years since my surgery (my 3 year anniversary is tomorrow, September 23rd!). I get asked on a regular basis what the worst thing about my recovery is. Honestly, it's not really a fair question. Anyone who has been through this will tell you that there is not really a good aspect to this situation; constantly getting dizzy, being off balance, not being able to write or type with my right (dominant) hand, not being able to move one side of my body the way I want to, not feeling things, this list goes on and on. I know I am very blessed but there IS one thing that I might miss the most throughout this ordeal: the feeling of being care-free.

Of course I miss my independence, but I also have learned to welcome help from others (not always easy) and I have gained so much of my independence back that my mind is somehow eased by the feeling of hope. But I really don't know if I'll ever feel care-dree again. I truly miss just having fun without thinking, or going somewhere without answering to my own body.

For some reason it's really easy for me to feel very jealous when I watch people on TV. As I view people that just walk and move with ease I say, 'This will never happen to them.' But still, one of my favorite shows is So You Think You Can Dance (on Fox). I LOVE watching people dance! They are so athletic! So graceful! Such body control! I WANT TO DANCE!!!

Turns out, dancing is a great form of physical therapy! It works on balance, small muscle groups,  stabilizers, and proprioception among other things. Plus to me, dancing is a sign of pure joy, fun, and totally being care-free! Well, I am NOT going to let my own body to get in my way! I'm going to dance! I was never very good anyway, so what does it matter now?

"No one looks stupid when they're having fun" - Amy Poehlar

I was determined to dance at my own wedding and so I did. Of course sometimes I lost my balance or just danced with my feet planted on the ground and my arms flailing abut. But for maybe the first time in 3 years, I had REAL fun, and let myself be (almost) completely care free! And let me say, I don't think I ever felt so good in my life! And for a few hours, I didn't think about what I was missing at all.

Me at my wedding. Check out that dance face! Get it, girl!

Use It or Lose It

If I don't do therapy, will I lose all my progress? 

As I began my post-surgery rehab, my surgeon stressed the importance of being diligent about doing both physical and occupational therapy. As I have said before, physical therapy comes naturally to me. I enjoy being physical. Still, I find occupational therapy one of the most frustrating things I've done. 

To move my fingers individually requires a lot of effort. It's hard to describe what I feel (which is not necessarily where they are in space or anything that they are touching...or that they are touching anything!) They feel stiff and heavy, and pressure is all around them, especially at the fingertips. They don't at all do what I feel like they should; it's hard to get them to work well at all. It's truly exhausting to use my fingers and hand.

It literally takes nagging or a lot of effort to get me to work on my fine motor skills. It's not that I don't care; it's only that I don't want to go through the trouble. Does that mean that it doesn't matter to me? 

No, I guess just hope I improve without effort.

News Flash: I won't. When my surgeon talked about the importance of therapy, he said "Use it or lose it." I desperately don't want to lose it, but if I am being honest, I need motivation to use it.

My big concern right now is writing and typing. I mean, using a hair brush and a tooth brush, among other things, is important, but I think I need to go one step at a time. As I type this with one hand I realize that I have gotten accustomed to ignoring "Righty." If I don't utilize my right hand then I don't really have room to complain. 

Sooo baby steps it is. I need to commit to using my right hand to brush my hair and my teeth (I can finish up with my left hand) and it's time to use this bad boy:

That's right; it's a really large keyboard. It's huge. People laugh when they see it. But it's easier for the fingers on my right hand to navigate the large keys. It's one of my occupational therapy tools. I think if I am actually patient and diligent about it, I will make progress.

Patience and progress seem to be the themes throughout this whole endeavor. I can be physically active as much as I want, but if I don't give my right hand the time it needs, I am bound to lose all the fine motor skills that I crave. Hopefully that is motivation enough.


If anyone has recommendations for thick pens (think the girth of one of those fat highlighters) let me know.

Where There's A Will... Pico de Gallo

When I was in my therapy hospital, after a number of weeks, part of my occupational therapy was that I learned how to do 'every day life' things. I made a bed, set a table, all sorts of things. Eventually I got to make brownies; I think all I really did was stir - I don't remember cracking eggs at that point or anything. But I was excited that I got to start to cook. I developed a love of cooking in college, which was really driven by a love of food and eating. I love to eat and can HOUSE food...I definitely eat more than my husband. I should be 500lbs.
After doing some little things, I made a grilled cheese sandwich. I remember feeling accomplished because finally I made something, but I really couldn't believe how hard it was! I was learning how to cook with one 'good' hand, and one hand that didn't seem to want to help a whole lot. We then practiced holding a knife or fork, feeding myself with my right hand, cutting soft things, carrying (plastic) plates, etc. So when I got home, after a while of adjustment, I would practice cooking by making eggs for myself as well as other small meals that were pretty simple. One day I told my dad what I was doing and he said while shaking his head, "I'm not really that worried about you feeding yourself; where there's a will, there's a way."
Well that couldn't be more true. Cooking is something that I have no worries about. I'm not going to make anything overly complicated, or that requires a ton of chopping, but I can still hold my own. I have acquired a couple of gadgets that make my life SO much easier, which I will highlight more in the future. But I have still adjusted and learned how to use a sharp knife etc. I have trouble holding things without a handle with my right hand, and a lot of trouble spreading things. But I think that if I can cook, heaven's knows anyone can.
Today's recipe is for pico de gallo. I always call it salsa, but it's really not as it's all fresh, nothing cooked.
Please forgive the bad quality of these pictures and the lack of 'action' shots; I had trouble working both the camera and knife

Simple ingredients to start (it's easier for me to use jarred garlic because it's hard - and dangerous - for me to cut small things; it's not that I can't, it's just easier

One of my fav kitchen gadgets! The Cuisinart Food Processor (notice the handle!) makes life extremely easy by eliminating a lot of precise fine motor skills with the push of a button. It IS heavy so I cannot say it's my number 1 fav but it's definitely up there

So, I tried to take a picture of me chopping these, but as I said before, it was hard working a knife and a camera at once. The beauty of this is that I barely have to chop these ingredient

while holding the handle wit my left hand - because of the control - and use the spatula to scrape the ingredients into the other bowl

Check out this action shot! I was able to get both hands in the shot for this one. I am quartering the tomatoes and throwing them in the food processor. I tend to either hold the object steady while I cut with the right; other times I guide the knife with my right hand (not shown)

I pored the chopped tomatoes from the food processor easily into the other bowl (tupperware) 

Another one of my favorite kitchen gadgets.  Sometimes squeezing a lime or lemon requires 2 hands, and sometimes "Righty" doesn't like to cooperate. This tool makes getting the juice from these citruses very easy

Fresh pico!

Ingredients:
- small bunch of cilantro
- 1/2 onion (white, yellow, purple, you pick)
- 1 clove (or more or less) of garlic
- 1 jalepeno (or serrano whatever you'd like) pepper
- 3-4 vine or roma tomatoes
- 1 lime
- salt and pepper

1. Roughly chop the first 4 ingredients and toss them in the food processor
2. Blend the ingredients, and put into a bowl or tupperware
3. Cut tomatoes into quarters and put them in food processor
4. Pulse the tomatoes so they don't become just foamy juice
5. Put tomatoes in bowl or tupperware with the rest of the ingredients
6. Stir all ingredients together; add juice of 1 lime, salt and pepper to taste; stir again
7. Enjoy!!

Featured Favorite Kitchen Gadgets
Cuisinart Food Processor http://www.cuisinart.com/products/food_processors/dlc-xpbcn.html
Citrus juicer http://www.surlatable.com/product/PRO-201764/Wood-Citrus-Reamer

I Will Not Let My Foot Stand In My Way

I would say that frustration is a very familiar emotion to me. There are things that I deal with on a daily basis that aggravate me. I scream, throw things, totally break down sometimes. However, I have also developed my patience. Things that I wouldn't have time for in the old days, are now things that I have learned to take a deep breath and take my time with - writing my name, tying my shoes, holding something with my right hand, going down stairs, picking things up etc. But right now I am pissed off. Like, honest to goodness MAD. Why? Because my stupid right foot has morphed into something that is NOT worth "just dealing" with. My arch has seemed to drop, presumably because signals from my brain are not being sent to my foot when I walk, stand, etc. So when I walk my foot turns out and I push off the inside of it. It's hard to explain or describe but it makes wearing shoes very hard. As I have said before, I can't wear heels (for now!!) and certain flats and sandals are a no-go. Well, I have scoped these flats out for a while, inspecting them, trying them on in the store, telling myself that they would actually work for me! So I got them.

Aldo Corinette $80  http://www.aldoshoes.com/us/women/shoes/flats/91939776-corinette/36&flagid=f12studs

Look how cute!!

I got home and immediately wore them around my apartment. They are quite comfy and easy to wear. No pinching or potential of future blisters. BUT my damn right foot doesn't keep the shoe on!! It's like my arch/inside of my foot pushes it off! This is not okay for me! I was set on having a cute pair of flats to wear around, look stylish in, jazz up some outfits. But no! My right foot seems to not care about those things!

I don't know if this picture does justice to this dilemma. Can you see how my right arch/ankle (left of the pic) look different? NOT OK!!

Nope; I am not returning the shoes. I am not telling myself that "it is what it is" and just not wearing them. I am going to fix this. I am not letting this foot and ankle problem win. This is finally motivation for me to ask someone about this. Exercise and re-teaching my body how to move by using exercise, resistance, and weights, are things that saved me. I am going to use those methods again to fix this. By making my muscles do certain things, I in turn, teach my brain those movements, and train it so that those movements become natural. I can guarantee that this will be a long process; there is no fixing my arch/ankle/foot by next week. But it WILL happen. 

Don't you dare try to get in the way of me and something I think is cute. I'll run ya right over.

Will this help in the meantime?
http://www.skymall.com/shopping/detail.htm?pid=203251316&c=10640

This??
http://www.skymall.com/shopping/detail.htm?pid=69751722&c=10640#

To get these adorable flats go to http://www.aldoshoes.com/us/women/shoes/flats/91939776-corinette/36&flagid=f12studs

My Musical Motivation

I know that I am a big advocator of having a good attitude and persevering through hard times. However, I am also realistic. There are definitely times when I welcome feeling bad about my life. I tell myself that I shouldn't feel sorry for myself because ultimately it solves nothing. But I kind of think that sometimes it's ok if I feel sorry for myself. Something really bad happened. I lost a large part of how I defined myself. Yes, I have SO much to be grateful for (I am still alive when death was breathing down my neck; not only am I alive but I am doing very well; my surgery could have had a much different outcome and it didn't; I have an incredible support system, on and on and on...). But I think it's ok to mourn the loss of my former self.

In those times, when I don't feel like picking myself up, dusting off, and holding my head high as I limp through life, I love listening to music that basically verifies and agrees with all of my sad thoughts. Here are some songs that I listened to a little too often in my early stages of recovery: (please note that I am VERY well aware that most of these songs are cheesy. Sue me for liking some cheesy music!

- Arcade Fire - My Body is a Cage (this was pretty much my theme song... still kind of is)
- The Avett Brothers - The Perfect Space (the lyrics, "I want to have friends/ that I can trust/ that love me for the man I've become not the man that I was/ And I wanna have friends/ that let me be/ all alone when being alone is all that I need" resonates with me)
- Ingrid Michaelson - Keep Breathing
- Kanye West - Lost In This World
- Citizen Cope - Sideways
- LeAnn Rimes - What I Cannot Change
- Glee Cast - Happy Days Are Here Again (sad but not)
- Sufjan Stevens - For the Windows in Paradise 
- Little Big Town - Lean Into It
- Glee Cast - Smile (I know that it's so cheesy to put the Glee version on here but for some reason I love it. This song can make me cry, really cry, at the drop of a hat; it's just heartbreaking to me)
- Norah Jones - The Grass Is Blue (originally a Dolly Parton song, and I LOVE me some Dolly, but I got hooked on this beautiful version)
- Jump Little Children - Cathedrals
- Portishead - Roads (you can't listen to depressing songs without a little Portishead)
- Regina Spektor - Hero

Then after a little while, true to form, I am done wallowing. I still turn to music, but I want it to motivate me, which it does! Here are some songs that I listen to when I need a little push:

- Richie Havens - Here Comes the Sun (in my opinion, this is the very best version of this song; it was the song of the father-daughter dance at my wedding)
- Gwyneth Paltrow - A Fighter (from the movie, Country Strong)
- Robyn - Dancing On My Own 
- Christina Aguilera - Keep On Singin' My Song
- Gwyneth Paltrow - Country Strong (from the movie Country Strong)  Yeah I am!!
- Idina Menzel - Defying Gravity 
- Christina Aguilera - I Am 
- Jo Dee Messina - Bring On the Rain
- Kanye West - Stronger (yeah it's everyone's motivational song but it works. Sue me)
- Timberland with One Republic - Marching On
- Sophie Ellis Baxter - Real Tough Girl 
- Talib Kweli - Get By
- The Talking Heads - This Must Be the Place (Native Melody)
- Kanye West - Amazing (yeah I am, WHAT!)
- Kelly Pickler - Tough (cuz there aint nothin' wrong with a woman that's got a little backbone)

- Chumba Wumba - I Get Knocked Down (obvious choice; duh)

- Eminem - Cinderella Man

- Florence + The Machine - The Dog Days Are Over (I know this is one of her popular songs but no matter what it picks me up, even makes me choke up; I love it)

- Garth Brooks - The River

- Glee Cast - Keep Holding On (I know, I know. I also know that it's not even the original version...I just like it)