13Apr/140

Five hundred twenty-five thousand six hundred minutes..

April 13th, 2014

…is about how long it’ll take you to read this blog.

Ha! Just kidding.
I hope.

This is the 7th attempt at writing a blog since my last update. And I know that for a fact because the other 6 attempts are saved on my iPad, some of which I’m sure will be making an appearance in today’s post after they are properly edited to be more current and up-to-date in discussing all the craziness that’s been happening lately. Or maybe not so properly edited, considering that I am going to copy/paste it to avoid re-writing because I’m feeling lazy.

Regardless, I figured that:
1. 7 is suppose to be a lucky number;
2. The internet is running at dial-up speed -oh the humanity!- so I won’t be distracted by the millions of things you can amuse yourself with online;
3. I’m feeling too ADHD to give The Property Brothers my full attention right now.
Given these circumstances, maybe I’ll actually finish a blog this time. Now, with all that being said, let me backtrack and show you what I wrote mid-March, when things were really not going so swell…

*cue dreamy flashback montage music*

Monday, March 17:
I’ve had a lot of time to think lately – and I imagine a lot of people are thinking “uh oh” and have probably already started scrolling and skimming to see if you really want to read any further or not. But stay with me here, I’ll try to keep it short (cue: laughter) and make it funny (cue: …..silence) with a side of inspiration. **edit 4/13- definitely not short…. Or funny probably**

I’ve had so much time to think lately because of my current predicament, which was the beginning of a pressure sore on my bum keeping me in bed the last 9 days. I’m not kidding, the last few weeks it has really felt like if it’s not one thing, it’s another. Or better yet, sometimes it seems like spinal cord related issues are like dominos and you never know when one swift hit may knock down the whole set. It all started with the urinary tract infection; which, honestly, I think I would have fared better just riding out the UTI than dealing with all the subsequent issues. First, I had a week of IV antibiotics through my newly added (and now removed) fancy schmancy very own PICC line. After those long 7 days, it took another TEN days and two urine samples later to find out the bad news that I still had the infection but the good news was that it could be treated with oral antibiotics and the PICC could finally come out, ten days after I thought it was coming out. And definitely not a moment too soon because I still have the remnants of a rash and the raw skin that the bandage left on my arm and burned and itched like crazy that it might as well be a form of torture to someone who can’t really scratch.

I wasn’t halfway through my week of oral antibiotics when I started experiencing some of the typical negative side effects, which we all know the side effects they list usually consists of everything from a small pimple to a slow, untimely death. Then, it was just unfortunate timing that I had a red spot develop during the same weekend that everything else was happening. Well, I lie. The red spot had been there for a while but I thought it was from sliding and not pressure and that it wasn’t serious. Amazing how even after all I’ve been through, I still like to think I’m invincible and that it won’t happen to me. Famous last words, right?

Despite feeling icky, I had plans Saturday (March 8) with my family to go see Chicago the Musical that we bought tickets for a few weeks ago, so I wasn’t going to miss it no matter how bad I felt. I couldn’t get comfortable in my chair all day and realized after it was too late that I probably didn’t have enough air in my cushion. The spot on my bum went from a “little red spot” to an angry, blistered, and swollen spot. I kinda chuckle when I think that a “little red spot” can cause so many problems, but it’s no laughing matter. It basically stops your whole world. There is no magic medicine or cream to instantly heal a pressure wound, you’re only option is to stay off that spot. And since there’s no way for me to be up in my chair yet not on my butt -not safely, anyway- that left me pretty much stuck in the bed.

I’m sure some folks are thinking how GREAT it would be to spend a whole day(s) in bed; I remember when my life was so busy and hectic that I would wish for such. But it is nothing like being STUCK in bed and unable to really get up for anything, except a shower. It’s especially torturous for me with my self-diagnosed OCPD and ADHD and the inability to fix things that I see around my room that are not the way I want them, but that’s a whoooole other blog (one of the aforementioned 7 that I said I had already begun). But back to being stuck in bed: In case you can’t tell, I am a very social person. Heck, I was a waitress for almost 10 years (and a damn good one), I made my money by talking and being a people person. Sometimes I’d serve food.

So these past few days, Feeling confined to my bedroom where I have extremely limited human interaction, feels like cruel and unusual punishment of the worst kind. And actually, social isolation is a real and dangerous thing. Humans are not meant to be completely alone all of the time. It gives you too much time to think about things you probably wouldn’t otherwise. The mind can become a scary place if you spend too much idle time and isolation there.

*back to present day, turn off montage music*

Aaaaaand that was about as far as I got with that blog that day last month, which was much more than my other writing attempts. A lot has happened since then though, which is less than a month. And considering how long this is already and how blah I feel, let me just give you a quick rundown of all the fun things that have occurred over the last four weeks:

There is something mysterious happening with my lower back/left hip. Given that I’m technically paralyzed there, I really cannot describe the pain (dull, achey, burning, stabbing- who knew so many types existed?) other than the fact that at times the intensity of the pain had me hysterically crying. I won’t lie and I’m sure most SCI folks agree, but I LIVE in pain. There’s never been a day since my accident that I haven’t hurt in some way; but I’ve just learn to deal with it. Don’t get me wrong, I’ll take meds and complain, but I don’t let it stop me from much. So to have such an intense pain that brought me to tears is a definite sign that something is not right. Not to mention that my muscle spasms started to go BERSERK. I’m pretty sure I’ve dropped at least one dress size because the spasticity drastically increased into my stomach and back so much so that you could actually see my abs flexing and my entire body from my chest down go rigid. And believe me, I didn’t have much for abs prior to my injury, so it’s gotta be the spasticity. In fact, the spasms were affecting me so badly that it was getting to where I didn’t want to go in public because of the pain, discomfort, and embarrassment that it was causing.

I guess you can say shit hit the fan last Saturday (April 5) when I had mom call 911 because the pain and spasticity (P&S) got exponentially worse when I was turning to get ready for bed that night. Anyone who knows me should know that if I am voluntarily going to the hospital -much less begging my mom to call an ambulance at 11pm- then something is seriously wrong. In addition to the P&S, my blood pressure was high and then I started to panic because it felt like a boa constrictor was squeezing my body from the chest down SO hard that it was becoming difficult to breathe. Despite all I’ve been through and know I can handle, I was scared. I had never experienced whatever it was that I was feeling Saturday night.

So to the ER we went, which after about 4-5 hours, a morphine-Valium cocktail, and a urinalysis later, I was sent home with a sad smile and a shrug that basically said, “sorry, but we don’t know what else to do for you.” Not to disagree with a doctor who went to school for way longer than I could commit, but the P&S was most definitely not from a UTI. After the last (almost) 4 years and countless infections, I know UTIs and I know my body… Or at least I thought I did. And considering I lost my local SCI dr last year and have yet to find another one, I feel like I have no professional to talk to (hopefully about to change) and I’m having a hard time playing detective with my own body to discover what the heck is going on now. Medical mysteries are not so much fun when you’re the main character.

It seems like this newfound issue will be an on-going saga so let me move on and try to wrap this post up before it becomes a novel. I guess this is what happens when you wait too long to blog, aye?

The good thing to happen the last few weeks is finally meeting the orthopedic surgeon who will be doing my tendon transfer surgery at Southern Bone and Joint in Hattiesburg. I absolutely loved the doctor and actually have the surgery scheduled for Monday, June 9th, in Hattiesburg. Not only did I really like him, but he was able to refer me to another doctor at the same clinic who could likely be my new SCI dr; unfortunately, that appointment isn’t until May 5th.

So, at the moment, I will be having a bicep to tricep/5lb pinch between thumb and index finger both done on my left arm in an outpatient procedure (2-3 hours) on June 9. However, like everything in my life, it is tentative based on my health at that time (knock on wood- I better be good to go but you just never know) and also depends on the bowel/bladder procedure I’ve been consulting with two new doctors at Ochsners in New Orleans about. In fact, I go this Thursday (4/17) for a ridiculous amount of bladder studies; my first starts at 10am and my last one is close to 3pm, I believe. Factor in the almost four hours on the road round trip, it’s gonna be a hella long day. But, ya gotta do what ya gotta do.

I was originally intending to do the bladder/bowel procedure first because it is more invasive (4-6 weeks recovery if I’m lucky) and then the arm surgery afterwards (3 month recovery but most that is because of occupational therapy required); however, the more I think about it, the more sense it makes to do them the other way around. Hence why I decided to go ahead and book the arm surgery but I still say tentative because I want to see what the the doctors at Ochsners think or if it will make a difference in anything. Honestly, I am way too indecisive so I just wish someone would decide for me. Where can I get one of those easy buttons from the Staples commercials? False advertising, I say!

Let me think if I pretty much covered everything… Doctors, ER visit, surgeries, new pain and spasticity, red spot… Oh yeah, that sucker is still there. Remember how I said spending 9 days in straight was making me go crazy. Well, it was beginning to fade and go away so I eventually let myself get up for a few hours a day for the sake of my sanity. Before I knew it, I once again thought I was invincible and started staying up all day like normal (in my defense, I’ve technically been working because I’ve been painting like CRAZY) and it wasn’t long until the fading red spot is now yet again a darker, angry red spot. That being said, I’m sure you can guess where I am stuck again. The real lovely part is that the red spot is on the right side of my bum while it is the tailbone/left hip that has been hurting so bad. So I either have to lie on the red spot or on the painful hip- and considering that putting me on my stomach is like putting a turtle on it’s back, it’s safe to say that it ain’t happening. And also because I can’t find a comfortable in any position in the bed or chair, I’ve just been trying to tough it up and get off the red spot so it can finally heal completely- hopefully one day much sooner than later. I know I can sit in my chair and deal with whatever the mysterious new pain is, but Katy don’t play with pressure sores. And Katy is also sick of being stuck in bed because of one.

Well, I think that pretty much covers it. Ok, that’s a lie, I can find a million more things to talk about, but this has gotten so much longer than I intended and I think anyone who made it this far deserves some sort of award. At the very least, go on and pat yourself on the back. I feel like I should insert a Sally Field’s “you really like me” moment for those of you who are still really are reading all this. I either assume you are either family or had nothing better to do than read what has turned into a short novel. I’m pretty sure I write way more than I ever intend to 97% of the time. Funny how that always seems to happen.

Regardless, I truly appreciate all of you who continue to follow me on my journey of recovery. Genuinely, I do. Someone once told me that moving on after a spinal cord injury was no walk in the park, literally or figuratively, but I never imagined such a roller coaster of everything physically, emotionally, and mentally that this new life has put me through. Random days like yesterday, when I was supposed to be going to a cousin’s wedding but after waking up I felt like I physically could not get up and pretend to feel well enough to go out and socialize. I didn’t wanna get out of bed period and slept most of the day away, feeling awful, and like I could just cry at any moment – for what reason, I have no clue. I am usually pretty darn good at “fake it til you make it,” but there was no fakin it -therefore no makin it-happening here yesterday.

The recovery is not a race and has no time-limit; it is a life-long journey, most certainly filled with plenty of curves, potholes, dead-ends and unfortunately for some, tragic and life-altering accidents. We might all be in different cars, on different roads, and headed in different directions, but when you really think about it, we’re all in it together. It doesn’t matter the car you drive, what is important is who is in it with you and where you are headed. My car, unfortunately, is still being modified, but I’ll tell ya, once I can drive and get past these surgeries and recoveries, it’s time for a big step. I’m headed to great places, I’m just on a detour. A detour with plenty of speed bumps that, while extremely difficult, has given me an opportunity to learn so much about myself, who I am and who I want to be. I’ve become closer to my family, especially my mom, who is my rock and role model that I’m forever indebted to. She is the strongest person I know and I hope to be half the woman she is one day. Because of this injury, I’ve made new friends and I’ve lost old friends, found out who and what is important to me and takes presence in my life because life is too short to waste time and energy on things that simply don’t matter. Sometimes easier said than done, I know.

Led Zeppelin’s Ramble On just came on my Pandora so I’m gonna take that as a cue to wrap this up. On a final note, I’ve been painting my booty off, preparing the Live Oak Art Fest in downtown Pascagoula on Saturday, May 10. Remember those 9 days I spent in bed? I watched tons of YouTube videos and art tutorials and learned some new techniques which are evidently paying off because everyone says my art look so much better! It’s nice to feel proud of your art. I will hopefully have new prints and notecards available to buy online soon. For now, here’s a tease of some new artwork and the end of a very, VERY, long blog. God bless.

Fun fact: excluding this very last sentence, this blog was 2945 words. Or roughly 110 tweets.

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3Mar/142

The Soundtrack of Life

March 3rd, 2014

Sometimes I forget just how much I love music. I can get absolutely lost in a song; caught up in a catchy chorus and soothed by soulful lyrics- music therapy is legit. Lucky for me, I was introduced to classical music as a child by my dad. Although it’s not what I usually have on my Pandora (even though I do have a Scott Joplin station that would make my Pop proud) it taught me to develop such an appreciation for real instrumental compositions. A song is not composed of just one thing. If you listen close, you’ll hear it’s multiple melodies going on simultaneously yet separately, working together in harmony. It’s too bad all us humans can’t do that, huh?

I’m an old soul when it comes to music; my most favorite band is the Beatles and my favorite genre is hands down 60s/70s (I pretty sure I was a flower child in a previous life). Not only was I fortunate enough to learn about Mozart and Beethoven at a young age, but my mom and sisters often listened to oldies and the classics, so I was no stranger to good music. My love grew much more when I enrolled in the school band. I played -are you ready for this?- tuba and then baritone from 6th-12th grade. While I loved making music, I can honestly say I was in it for the social comradery more than the passion of playing, but it gave me a whole new aspect and appreciation for what really goes into a song. It goes so much deeper than some background noise you have on at work. If you have never taken a long, meaningless drive with your favorite song turned all the way up and rockin’ out like it ain’t nobody’s business, then I encourage you to stop reading this blog and go do so immediately. But be sure to come back and finish the blog when you’re done.

Oh good, you’re back. So, as I was saying, music has a way of making you feel certain ways, provoke emotions, and allow you to express yourself in a way you didn’t know how. But what’s crazy to me is the way a song can be like a time capsule. There are so many different songs that, even when I hear them still to this day, immediately launch me back in time to the memory that accompanies it. Important or special moments in my life are all loosely tied with music, the phases of genres I’ve gone through as I’ve grown up providing a general timeline of my life. I will admit, though, it’s not always a good thing. Some of my favorite songs take me back to a time I don’t want to revisit, to a space I can never go back to and to a memory that is sometimes too bittersweet to bear. I’m not sure why, but I’ve been making myself listen to some of this music. It’s my own form of torture, I guess. Although I love the songs themselves, I don’t love the emotions they can arouse. But I’ve finally decided to confront the feelings in attempts to conquer it and continue on. Or maybe, I can’t fight this feeling anymore (you get +100 awesome points if you got the reference).

A long time ago, I blogged about the stages of grief and my theory on it, which is that it is a process that you can go through multiple times and in random orders. Well for today’s blog, we’ll be revisiting Stage 2: Anger. For a long time I felt fine, 2013 was a pretty good year. Then, starting around Christmastime, probably coming down off the high from my California trip and the taste of independence I had, it’s been a struggle. I had big plans for 2014, which have unfortunately been slightly delayed. No doubt that those kind of setbacks could affect me so heavily. Or perhaps it is just the lingering infection that has me so blah lately, an evidently nasty bug that refuses to clear could certainly cause me to be more morose. Honestly, however, I think it stems from something deeper than that.

Listening to some of my old music and entertaining the emotions they provoke, one feeling keeps resurfacing and that is anger. I guess I never realized how angry I felt that the life I made for myself was taken away without my consent. That’s not to say my life was anything spectacular, 23 and going nowhere fast, but it was my journey to create and it got taken from me. Even though I do sometimes feel that breaking my neck inadvertently saved my life because I simply could not imagined where I would be today. I don’t think I was leading the type of life I am meant to lead. I wish I had realized then what I know now, but hindsight is always 20/20, right? If I had known sooner, my life would have been totally different. I would have spent more time going out and doing all the things I’ve always wanted: exploring the world around me and living more in the moment without letting life just simply pass me by, always waiting for a tomorrow that never came. Stop sitting on the couch and go out and live life.

In this period of my life now, I feel like I can’t make all my own decisions or even yet embark on my new journey and move on with my life. I just feel stuck. I always feel stuck, always waiting for something – waiting for more money, waiting for rehab, waiting for surgeries, waiting to drive. Some days it just seems like every time I get past a speed bump, there’s a red light that follows. Feeling like you get knocked down every time right after you get back up takes its toll on a person. It really kinda makes it impossible to plan some sort of timeline of goals because it seems like when I do, something always comes up. I know now that there is absolutely NO timeline to any type of recovery, but it’s difficult not to get discouraged when your general expectations are far from being met. I guess I just thought at almost 4 years post injury I’d be at a different point than where I am now; however, a good friend of mine who has lived with SCI for the last 15 years told me that the first 5 years post-injury are the toughest. That being said, I’ll be holding my breath til June 13, 2015.

I know there is a reason for my accident and for God taking me out of the life I was in and putting me here. I have no doubt it was for the best, although I don’t always agree with His method. But riddle me this: Can you honestly go through life without questioning why bad things happen to good people? Sometimes it just doesn’t make any sense, and I’m barely even talking about my situation anymore. I know this is where faith comes in. Believe me, I have faith. Sometimes it’s the only shred of something I have left to cling on to. But you can still have faith and question these things and get angry, right? I think we’re entitled to that. At least I’m giving us all permission to. If you don’t confront it and deal with it, how do you ever move pass it?

I’m sure some of you are tempted to offer me words of encouragement and advice, but – and please take no offense – unless you have rolled a mile in these wheels (and I do mean that literally) then nothing you say will really resonate with me. It’s sad but true, you never understand what someone goes through unless you’ve been in their situation. I don’t write this blog for pity, sympathy, nor advice or encouragement; this blog is my story, on the good days and the bad. This blog is my struggle, my journey to recover, to rediscover myself and move on with my life. It’s not always pretty and it’s far from perfect. I write these blogs because otherwise I might go crazy one day. I write these blogs because a friend who also lives with SCI recently told me how much my blog touches people and hearing that so randomly from somebody who has lived with SCI longer than I really hit me. It was much needed validation for all my recent questioning. I write these blogs because I have something to say. Whether anyone wants to read it or not.. Well, that’s a whole different blog and I think we can both agree that this has gone on long enough.

With all that being said, and because I always feel awkward trying to end my blog, I’ll just cut it off here. You can pretend that it’s like the end of The Sopranos when everything cuts to black and you never find out th.

Yeah, I just did that.

**Note- too tired to edit, please forgive all the grammatical errors, I’m sure there’s plenty.

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19Feb/140

That’s life..

February 19th, 2014

So what’s been going on? Not too much, honestly. Like I mentioned in my last blog, I have no idea when I can anticipate having the surgeries I was hoping to have sometime this winter. I will meet with the orthopedic surgeon in regards to the arm surgery on April 1 and then I will meet again with my urologist in New Orleans in regards to the bowel and bladder surgery on April 17, so I feel kind of stuck in limbo until then. On the flip side, this will give me plenty of time to paint and prepare for the upcoming art festivals that happen during the summer and fall.

Otherwise, there is really not too much going on. I had to receive a PICC line this past Monday for a round of antibiotics to cure a bladder infection that was resistant to all oral medications. Fortunately, it is only seven days and I am able to do it all from home, which is much preferred over being admitted to the hospital. I am also lucky that despite having what is evidently a nasty infection, I have not been very symptomatic so I am thankful for that. Let’s see, what else… I took off from school this semester in anticipation of having the surgeries, which I am now regretting considering that I will likely not be having either surgery any time before the summer. Because of that, I also cannot plan any upcoming trips for additional therapy until I am more certain about which surgery I will have first and when. I would love to do some therapy locally just to be involved in some physical exercise, but I’m scared to use my Medicare/Medicaid therapy hours because I will need them after the arm surgery. I am, however, trying to find someone locally to come to my house to help me with my exercises so I can continue to get stronger and move forward in my recovery. In fact, if you or anybody you know might be interested, please don’t hesitate to email me at katy.blake@ymail.com. No previous experience with spinal cord injury or physical therapy is needed, but you must be very physically strong and willing to learn. Not only do I have plenty of equipment at home, but I have multiple packets of exercises and information that anybody can learn. The main thing is finding somebody with enough physical strength to be able to safely handle me primarily on their own, especially to work on transfers and getting in my standing frame. I am very flexible with days/times and the pay is negotiable.

The only other thing I really have going on at the moment is trying to get my van modified correctly. It has been over a year and a half since I first got the modifications and I am sad to say that it is still not properly fixed for me to safely drive. In addition to not modifying the windshield wipers or the headlights, it seems like the positioning of both the hand controls and the easy lock system (a fixture installed on the floor board that latches onto my chair) is all wrong. Unfortunately, the state will not provide any additional funding for them to correct what was not done right the first time, so I am looking into taking matters into my own hands. With that being said, don’t be surprised if I do another big fundraiser soon to help pay for what I’m sure will be a very expensive undertaking. If I had the energy and the patience, I could fight the system to help pay for what they had done wrong, but I am so fed up and anxious to have this done that I am willing to work as hard as I have to and do what I have to do to get it done right. Although the thought of driving somewhat terrifies me, I am beyond ready to take the next step towards regaining my independence. To say that I am tired of having to depend on other people to take me places is an understatement. I can only imagine how good it will feel to be able to get up and go whenever I want. It is truly one of the things we take for granted. I have an appointment to take my van Hattiesburg next Thursday for a consultation to see what can be done, so I look forward to getting the ball rolling on finally getting these modifications corrected.

Lastly, since I have not updated after the auction ended, I just wanted to let you know that the Saints painting sold for $1,225! I am truly thrilled and was overwhelmed by the response I got on the auction. There was only one little hiccup and that was realizing on Sunday night, during the Super Bowl of all times, that the auction was actually set to end on Sunday night and not Monday night like I thought and promoted. Hopefully, that did not upset or interfere with anybody who was planning to bid at the last minute on Monday. However, I was very happy that the person who won the auction is the family of a woman who passed away from cancer and they have a foundation in her honor called Live for Lauren that I actually had the opportunity to donate a painting for them to auction off to raise money for their cause last year. I thought it was beautiful how that came back around full circle and I’m excited that I will actually get the opportunity to meet them because instead of having me spend the money to ship the painting, they offered to meet me in person when they are visiting the coast for Mardi Gras in a few weeks. So congratulations to them for winning and thank you so much to everybody who bid and helped share my story. I am so grateful for all the blessings I have been shown and feel like words can never truly express the depth of my gratitude, but I will keep saying them anyways.

That’s all for now, folks. Until next time!

 

27Jan/140

Let the bidding begin!

January 27th, 2014

Happy Monday! A couple of quick updates (although I am due for a lot more); the main reason I am updating is because the auction for the Saints autographed custom painting is officially open for bidding. It is listed on eBay and is open to anybody in the United States (due to shipping, which is free to anyone in the US). Bidding began at $100 and as I’m writing this at about 11 AM on Monday, it is already up to $400! My outlook for this auction is the same as my outlook on life: hope for the best but expect the worst. I do not have any high expectations because I don’t like to get my hopes up, but I have my fingers crossed that it will do as well as everybody anticipates. Regardless of the outcome, I am so deeply appreciative of the Saints organization for making this auction possible and for all the news media (and all of you) that have helped by featuring my story and spreading the word. I’m reminded every day that I would not be here if it were not for all the support I have been shown and words can never express how truly grateful I am for that. You can find the auction on EBay by clicking this link and please also feel free to share the Saints autographed painting page I have on my website with your friends and family on your Facebook, Twitter, Reddit, put a sign out in your front yard, shout it from the rooftops – I am not picky. Bidding will end in one week on Monday, February 3. Happy bidding and may the odds be ever in your favor!

In addition to the auction, the other couple of things I wanted to mention for those of you who follow my progress are the surgeries that I have been talking about. I met with my two new doctors in New Orleans earlier this month for some bladder tests to determine exactly what exactly should be done in regards the procedures. The testing went better than they expected but they want to be more thorough and have scheduled me to come back in a couple months to do some additional tests before we schedule the surgeries. While I am thankful to have doctors that want to be thorough and cover all our bases before undergoing major surgery, I could not help but to be a little upset about the fact that this will further postpone having these procedures done. In my mind, I tried to plan out a rough timetable of when I would have the surgeries and how long the recoveries would be so I could have a ballpark idea of when I could anticipate going back to rehab. Now, however, I am undecided as to which surgeries I will have first and unsure how to plan for, well, anything honestly. Ideally, I would’ve liked to have had the bowel/bladder surgery before winter ended and spend the 4-6 weeks recovery inside without feeling like I was missing much if the weather was unsuitable (which anything below 65 degrees is considered unsuitable to me since I stay cold as it is anyways). Then, follow it up with the arm surgery which is an anticipated three-month recovery with vigorous therapy to re-gain the function of my arm.

In a perfect world, I was going to be all healed up and ready to go by summertime. Unfortunately, this is not a perfect world, so at this moment I am not sure at all what exactly is going on or when it is going to happen. I meet with my new doctor/surgeon in regards to the arm surgery in Hattiesburg this Thursday, so I hope to have a better idea of what the heck I’m going to do after talking with him. Maybe this is a blessing in disguise and perhaps it is a better idea for me to do the arm surgery first anyways. I don’t know. All I know now is that I will continue to pray about it and hope that God will give me the guidance I need to make the right decisions, because I just feel lost. And I also know that I really cannot plan anything else such as going back to rehab or school until after I am through these surgeries, so that is where I’m at now. Just kinda in limbo and unsure of what will transpire over the next couple of weeks. Ah, c’est la vie, right?

Hopefully by the next time I update, I will know (at least a little) more. For now, I just wanted to post a quick update, especially since the auction started today. Here’s hoping that it does better than I anticipate and that all goes well and smooth not only with the auction, but with my upcoming appointments and the weather. For those who are unaware, it is forecasted for us to get snow and freezing rain tomorrow and going into Wednesday. You know us Southerners are not equipped for that kind of stuff! I hope it all clears up before Thursday, otherwise my appointment may be getting postponed because I am not keen on the idea of traveling almost 2 hours in those kinds of conditions. I’m about to start counting down the days until summertime. I need the thick humidity back in my life! I just don’t know how all of you up north can tolerate the harsh winter that you have had this year. What’s incredible is the highs for today is mid 60s and then expecting snow tomorrow! That’s the south for ya. Although temperature doesn’t matter with a spinal cord injury and the inability to regulate your body temperature. It’s 64 degrees and I’m shivering seated next to a heater. No worries, I’ll probably be burning up in an hour. Oh, fickle body.

That’s all for today, folks. Until next time, stay safe and warm and happy bidding!!

2Jan/144

Surgeries and stuff

January 2nd, 2014

Happy New Year! At least I hope that it is happy for most of you. Not to be a Debbie Downer or Negative Nancy, but I’ve been dreading 2014 for quite a while. Yes, I’m talking bad about you already 2014. You are gonna be a rough one for me, I just know it. Please feel free to take mercy on me if you’d like, but I’m not expecting it.

I can only assume this lady is on some good drugs because she sure can't be that happy about drinking a gallon of toilet water.

I can only assume this lady is on some good drugs because she sure can’t be that happy about drinking a gallon of toilet water.

What does 2014 hold in store for me? Well, over the new few months, I’m going to be having a few surgeries done. The first will be the bladder surgery that I attempted to have a couple of years ago. This will be a bladder augmentation (enlarging the bladder) and something called a mitrofanoff, which is creating a stoma in my belly using either my intestine or appendix so that I am able to catheterize myself through the stoma. This will eliminate having to have an indwelling catheter or having to depend on others for my bladder program. For those who don’t recall or weren’t around back then, I had this procedure scheduled in Jackson, MS, in Jan. 2012; however, after being on a liquid diet and being forced to try to drink GoLYTELY the night prior to surgery, I got terribly ill and surgery got canceled the morning of. By the way, if I ever find the person who came up with GoLYTELY, I will bust your kneecaps and make it look like an accident.Just sayin. I can get past the taste, but I can never get past the amount of which you have to drink. The maker of GoLYTELY is a twisted person.

 

Months of anxiety and anticipations came crumbling down after a sickly one-night stay in the hospital. Amazingly, it turned out to be a blessing in disguise for a few reasons. 1. It was after the failed attempt and the depression that followed that led me to painting and we all know where that has gotten me. 2. I found out later the surgeon had other patients that had the same procedure to get extremely sick and their outcome was completely screwed up. I guess God knew what he was doing. Score: God +6,987,465 Katy -867,456 … give or take a few.

When that surgery was canceled late January 2012, the earliest it could be rescheduled was March 2012. I, however, already had plans for the Ole Miss Charity Bowl that March and my first trip to Shepherd Center a few weeks after that. With an estimated 4-6 week recovery, I was not willing to miss or postpone the events I was so excited for. The surgery was indefinitely postponed but not canceled. I knew one day I’d have to face it again…

And now, 2 years later, I’m getting close to facing that day again. I found a new urologist surgeon in New Orleans, a much easier drive than Jackson -2 hours instead of 4- especially considering that I will be hospitalized for 7-10 days post-op (talk about a great opportunity for a Saints charity visit *hint hint). But, in true Katy fashion, I’m adding a new twist: in addition to the 2 bladder procedures, my doctor wants me to consider doing a bowel procedure (called ACE procedure) with another doctor at the same time. Without getting into the dirty details, the bowel surgery would create another stoma in my belly that would allow me to be completely independent in both my bowel and bladder care. By this rate, maybe I’ll go for a world record of how many holes I can put in my body.

So, I’m sure you can do the math, but that would be three procedures at one time. For anyone who has never had an abdomen surgery, let me be the first to tell you that it hurts like a mother-trucker. I had an emergency surgery about a month post-injury after we discovered my feeding tube was leaking. 11 staples above my belly button later, I was begging for my dose of dilaudid every 2 hours on the dot -and I’m supposed to be paralyzed in my abdomen! It is a lot to put a healthy body through, and since I’m not 100% healthy anyways, it’s going to be extra tough on me. Even if everything goes as perfect as possible, it’s going to be difficult. But who are we kidding? Nothing ever goes perfectly for me. Life lesson 365: hope for the best, but prepare for the worst. I’m an optimist, but I’m just being real.

I meet with the 2 surgeons in New Orleans on the 10th of this month for additional consultations, bladder tests, and likely to schedule the surgeries. Like I said, I’ve heard the recovery from the bladder surgeries is roughly 4-6 weeks, but I don’t know what the bowel surgery will add to that. I’m praying that it is no more than 2 months top, because that’s not all she wrote.

After a full recovery from those procedures, I will be scheduling an arm surgery called a tendon transfer. In this procedure, a surgeon will take tendons from my strongest muscles (biceps) and transfer some of them to my triceps and my hand that will allow me the ability to have a 5lb pinch between my thumb and index finger. Crazy, huh?  But this surgery could potentially be life-changing for me. Like I always say, the wheelchair is the easy part; but having such limitations in my upper extremities is what makes life so extremely difficult. Obviously you can think of the millions of things we use our hands for, but do you even realize how much we use our triceps? Dressing, showering, driving, pushing a manual chair – the list goes on and on. This surgery will give me back some of those abilities in due time after much therapy and hard work.

Luckily, it is a simple outpatient surgery, I think just 2 hours. I’ve decided to just do my left arm first for a few reasons. Whatever arm I do will be casted up for 3-4 weeks, followed by 3 months of intense occupational therapy; therefore, that arm will be out of commission for a while. I’m definitely right hand dominant and have learned to compensate pretty damn well with it. The only times I use my left hand is to help my right hand do something, and that isn’t very often. I’ve met people who have done both arms at once and I don’t know if I admire them or think they’re crazy. I know that for 3-4 months post-injury I was pretty much completely helpless, having to depend on others for basic needs like eating and drinking. Nevertheless, I don’t think I can willingly submit myself to that level of dependence again. No ability to use my phone or iPad? No way. No freaking way.

So, I figured since I rarely use my left arm anyway, it would be best to do it there. It is definitely extremely weaker than the right and I figured heck, what do I have to lose? If everything goes smoothly and it’s a fantastic outcome, then I can consider having it done to my right arm later down the road. On the flip side, if I don’t think the recovery was worth it, I think I can live with my right arm the way it is. That seems logical, right?

The tricky part about this process is finding a local certified hand therapist to do the 2-3 months of therapy. The surgery is the easy part; it’s regaining and retraining the muscles that will be torturous. Although I met with a surgeon while at Shepherd in Atlanta, I found one in Hattiesburg that I will be meeting on the 30th of this month. It sure would be a lot easier to go 1.5 hours than it would be 6; however, I know Shepherd is the best when it comes to anything spinal cord. It’s kinda like would you rather buy your ball gown from Macy’s or JCPenny’s? When you want a good steak do you go to Ruth Chris Steakhouse or Chili’s? No offense to the doctor in Hattiesburg (or JCP or Chili’s- I’m sure your steaks are deliciously sub-par) but you can’t compete with Shepherd. So that’s another big decision I have to make.

It only it were this easy

It only it were this easy

In conclusion, between the 2 surgeries, I’m anticipating 4-6 months recovery. Now do you understand why I’ve been dreading this year? Talk about playing Operation! I know the outcome will be SO well worth it and I cannot wait to see the independence I will gain, but the process to get there will be tough. And these are all decisions that I must make on my own. I can’t even decide what to eat for lunch most days. I’d much rather someone just tell me what to do. Regardless of who makes the decisions, willingly putting myself through these surgeries will be so physically difficult that I don’t know how to NOT dread it. And that leads me to where I’m at now.

I don’t have any dates set yet, but each day that passes is another day closer. It feels like impending doom and all I can do is dread it. No matter how many inspirational quotes or positive pep talks I give myself, I just can’t let go of the sick and stressful feelings I have in regards to these surgeries. Then again, it doesn’t help that I’ve read so many stories about complications with quadriplegics going under anesthesia, problems with dysreflexia and hypotension, or the possibilities of blood clots. I should start a petition to have WebMD banned.

So this is my 2014. I really hope to make another trip to both Shepherd and Project Walk before the end of the year, but I know better than to try and plan anything before getting through the surgeries first. A friend of mine who has been injured for 15 years told me that the first 5 years are the worst. I’m going on 3.5 now, so I’m more than halfway through the tough stuff. That’s something to smile about! I can’t wait until I’m writing about 2015 and can re-read this entry with a chuckle at my nervousness. But for today, I will likely continue to stress myself to the point of sickness until I am sedated and headed to the first operating table. I will post more when I know more.

I hope you all had a happy and safe New Years. Let’s make it our best yet! That’s what I’m constantly praying for, anyway. Lord knows it can’t be my worst- that award goes to 2010. But enough of that. Until next time, my friends:

We’ll take a cup of kindness yet
For auld lang syne

16Dec/131

Project long, overdue California update

December 16th, 2013

Warning: this will be incredibly long, given that it is incredibly long overdue.

Outside the facility

Outside the facility

For those who don’t follow my Facebook, and even for those who do, I just wanted to talk about how Project Walk (PW) and my trip to California went. Let me just began by telling you how great I think Project Walk is. It is a completely different therapy program than what I’ve done at the Day Program at the Shepherd Center. All the previous rehab that I’ve had prior to PW primarily focuses on regaining independence and learning to compensate for what you no longer have; PW, however, is a totally different ball game. Instead of learning how to compensate, PW attempts to re-engage the nervous system to try to reactivate the damaged nerves and re-strengthen the paralyzed muscles. I was a little nervous that it was not the proper program for me because I am nowhere even close to learning how to walk, but just like an infant, PW believes that you must learn to crawl before you can walk. What I mean by that is there are a million other little things that would have to happen first for me to ever be in a position where I can possibly regain the ability to walk.  What is more important for me now is strengthening my upper body and my trunk control, which is what I worked on a lot during the two weeks at PW. As I was doing the exercises, I would mentally focus on trying to move the appropriate muscles, even those I am unable to feel. I don’t know if I can ever explain how extremely difficult it is to try to move something that simply will not move. It hurts mentally just as much is it hurts physically, not to mention the severe frustration that occurs when you try so hard and feel as if though nothing is happening. But I did learn that although I cannot actually see anything happening, that does not in fact mean that nothing is happening. There were some lower body exercises where the therapists could feel tiny flickers of my leg/glute/hip muscles trying to re-engage and activate. That is not to say that it is 100% guarantee that I can recover all the strength back in those muscles, but it does provide a flicker of hope that with the proper therapy I could potentially regain more function than doctors anticipated. As they say, a single spark can start a prairie fire.

Let me move on before I write a novel about trying to recover from paralysis. As I was saying, I think Project Walk is a great therapy/exercise program for anybody with a disability. In fact, the specialists there are not even physical therapists, but instead they are certified specialist with degrees in exercise science and additional training and education on spinal cord injuries. I cannot tell you how beneficial it is to work out with a trainer who has thorough knowledge on the body and the spinal cord to make sure you’re doing the proper exercises and using the right techniques. I can only imagine how much further you are able to go in your recovery when you have access to a facility like PW. Two weeks were such a tease, especially when it is just four days a week for three hours a day. Although I must admit, after those three hours I was mentally and physically exhausted. But if I noticed that much progress in such a short period of time, it makes me dream of what it would be like to attend for a much longer extended period of time. That is another great thing about PW. In addition to learning many of the exercises there, I also came home with a folder of all the things I’ve learned there, the equipment to use, and how to train someone to help me with the exercises. Furthermore, I can log-in to their website to access additional information as well as videos of all the exercises for reference. So although I do not currently live close to a PW, I can still continue doing an intense exercise program at home as long as I can find a good trainer to hire.

So that was the therapy aspect of my trip to California (more pictures/video at the end of this update). But you know that all work and no play makes Katy a cranky girl, so Laura and I made sure to make time to venture out around town and enjoy beautiful Southern California. Our hotel was in San Marcos and Project Walk is in Carlsbad, so we mainly stayed around those two areas. We got to enjoy beautiful sunny afternoon at Carlsbad Beach and shopping around the village. The one weekend that we had free there was spent at Seaport Village in San Diego with some of my close friends who drove in from LA. We also had the opportunity to visit Safari Park, which is an extension of the San Diego zoo, on our very last day there. It was an absolutely gorgeous day, which we were glad to see after three or four rainy and dreary days. Would you believe I even got to ride in a hot air balloon?? How awesome is that?! We ended our two-week trip with dinner on the beach in Encinitas. It was the perfect day to end an amazing trip before the start of a very long and stressful flight home.

This was my first time flying since I’ve been in a wheelchair and Laura’s first time to fly period. We were flying from New Orleans to Atlanta and then to San Diego through Delta Airlines. The flight to California was fantastic, although the transfer team in Atlanta was a little iffy. I think I went above and beyond making sure that my wheelchair made it through without a scratch, since my worst nightmare was getting to California and finding my chair damaged. To say I was acting a little neurotic about it is likely an understatement. I even went as far typing up the simplest instructions possible of how to handle my chair printed on a bright pink flyer and attached it to my wheelchair along with enough bubble wrap to hide a dead body. Other than a slight delay on the flight going from Atlanta to San Diego (and the iffy transfer team), things could not have gone any more smoothly. Both Delta and TSA Cares provided great assistance and accommodations for me and I would highly recommend others with disabilities to fly Delta as well as take advantage of the TSA cares service to help make flying as easy as possible. Of course, it seems odd to say that right before I tell you about the stressful flight home. It was already going to be a long flight because it was the red-eye and we had been up since 6 AM and spent the day out and about, so we were already exhausted before even getting to the airport at 9 PM. We loaded up on Mountain Dew and were probably the only people awake on the 4 hour flight to Atlanta. Upon arrival, as we waited to be the last ones to get off the plane, I was looking out the window when I saw my chair going down the conveyor belt and on the cargo truck. I immediately noticed that something was not right and my chair was being physically forced a little too hard. There was some miscommunication about my chair being brought back up for my 2 hour layover so I waited over an hour for them to locate and bring my chair up. After finally getting it, we discovered that it was indeed broken and would not even drive. To make a long story short, after I had my crazy Madea moment, a man who worked for Delta was able to do something (I suspect voodoo magic) and fixed my chair to where I was able to drive it. After landing in New Orleans, I filed a claim through Delta about the damage to my chair. Amazingly, I was contacted by their contracted company, Scoot Around, in regards to getting it fixed before we even made it home from the airport. Both Scoot Around and Delta were great about following up and making sure my chair was properly fixed. Fortunately, the damage to my chair was not serious and my vendor was able to easily fix it within a matter of minutes.

So that was my trip in a nutshell. A rather large nutshell. In addition to all the reviews I gave about Project Walk, Delta, and TSA, I also want to mention some of the different companies and services we used out in California. We stayed at the Residence Inn Marriott in San Marcos and it was absolutely fabulous. The staff there went above and beyond to make sure that everything was accessible and accommodating for us and we could not have been more satisfied with our stay there. I think our only complaint would have been the amount of street noise that seems to start at 5:30 AM Monday through Friday. After just staying two weeks, I am pretty convinced that 1 in 4 Californians have motorcycle and drive it in front of that hotel every single morning. We had a rental van from Better Life Mobility and it was absolutely perfect with extremely reasonable prices. I was able to rent a Hoyer lift through Advanced Medical Supply which is now located inside Project Walk. Both that company and the hotel were great about coordinating drop off/pick up with the equipment prior to my arrival to make sure that I would have everything I need before I even arrived in California. All in all, it was an amazing trip and I’m so proud to know that I can fly across the country, stay for two weeks, WITHOUT my mother, and return home in one piece. It gave me an incredible sense of independence that I’m yearning to get back. In fact, I would really love to spend an extended period (3-6 months) of time at Project Walk to see what type of progress could really be made. And while there are some facilities that are closer, I would really love to go back to Carlsbad for multiple reasons. But I also know not to get ahead of myself and that I have lots of things I need to do before I can even think about going back off to rehab.

Considering, however, that this update is getting near 2000 words, I will go ahead and cut it of here before I write another four pages of all the things I have to look forward to in the New Year. I have a LOT more to talk about, so I will try to do better with updating this blog more often, but we all know how hectic things are around the holidays. Also, before I forget, I want to mention that I have sold out of my calendars and will only be ordering more if I get a large number of people interested in buying and who are willing to prepay. But I do finally have my note cards available to purchase online for only $7 (with shipping) and hope to have some of my original canvases available to buy online as well within the next couple weeks. I also finally added a page that has all the details about the fleur-de-lis painting that has been autographed by the Saints that I will be auctioning off Super Bowl weekend. You can find that and the note cards under the menu at the top of the page. With all that being said, in case I don’t get a chance to update again before, I would like to go ahead and wish a very Merry Christmas, Happy Hanukkah (or a joyful anything else you may celebrate) and hope y’all have a safe New Years. Bring on 2014!

To see some of my videos from PW, please follow these links (They should still work even if you don’t have Facebook):

Video 1

Video 2

Video 3

5Nov/134

Dream of Californication

November 5th, 2013

The first thing I want to mention before I really get into what this blog is about is the good news about my Medicaid. I received a letter Friday that my Medicaid has been reinstated and I will not have to go through the appeal process or have a hearing. I don’t know what transpired because I had several politicians making calls on my behalf, so I think either somebody got in trouble or that the people at the Medicaid office finally used a bit of common sense that they could clearly see that these donations were strictly for the trip to California and I had plenty of receipts and documentation to back that up. Whatever it was, I am extremely thankful that it was quickly settled and I will not have to go through the three-month process of appealing my case. Although my battle has been won, the war is not over. I am now asking my state legislators about the possibility of changing the stipulations and the law about donations being considered income. I was astonished by how many other people commented that they have had the same difficulties trying to receive the benefits they deserve and legitimately need. I don’t know if I can make a difference, but I will most certainly try.

What I really wanted to talk about was my trip to California that is just barely 5 days away. I’m starting to have severe anxiety and need to write it all out to help relieve some stress. Like I said in my previous post, I’ve been responsible for all the planning and reservations. I have double and triple checked myself multiple times but I’m still concerned that maybe I’m forgetting something. My mother has assured me that I’ve done everything that I can and now it is out of my control, which is probably what is giving me so much anxiety now. It is scary to trust everybody to do their job and making sure that everything falls into place as it should. Then, there are also all the horror stories I’ve heard from people about their chairs getting damaged on the plane.

For those who don’t know, because I don’t think I ever really discussed it, I sit in a regular airplane seat like everybody else. I am very lucky that I was able to go on an airport outing with the Shepherd center back in the spring. I was supposed to go on this outing in 2012, the first time I went to Shepherd, but it just did not work out. Then, ironically, I almost did not go this last time because the outing was the day after my unexpected hospital stay because of a horrible UTI. At the time, other than not feeling 100%, I also didn’t really care to go because I did not think I would be flying anytime soon. But I guess God knew something I didn’t. Now, I am so extremely thankful I got the opportunity so I’m not going into this completely blind. I am not nervous about the actual flying part; I have flown plenty of times before my injury. But flying in a wheelchair is a whole new ballgame.

So, how do you fly in an airplane when you are in a wheelchair you ask? Well, let me tell you what I know just based off my experience from the airport outing. I can opt to either check in my power chair with my luggage and cruise around in one of the provided wheelchairs that they have at the airport or I can stay in my power chair and have it boarded underneath the plane than I am on right before we board our flight. I will go through TSA where I will have to instruct them that I’m unable to stand or really help much for them to thoroughly pat me down, but we still don’t get off the hook that easily. Because I will require extra assistance, we are allowed to board the plane first. I will drive my chair to the door of the plane and I will have assistance from people who work for the airline to help transfer me into an airplane wheelchair that is small enough to go down the aisle. Then, they will push me to my seat and transfer me into a regular airplane seat. I will take the cushion from my wheelchair and put it on the seat because the special Roho air cushion I sit on is good for my skin and you don’t want to risk getting a pressure sore from sitting on a denser surface for too long. Because of my level of injury and lack of core strength, I will also bring a chest strap to put around me and the seat so that a little turbulence doesn’t throw me into a stranger’s lap. It is up to me to be able to clearly vocalize what I need for my personal safety and what needs to be done with my chair to ensure there is no damage. I’m just so concerned about the likelihood of something getting damaged. Not only because this chair cost more than any car I’ve ever owned, but if something happens to it then I am up the proverbial creek as far as just having my basic mobility, which is obviously a necessity for anybody. Especially since I have a layover in Atlanta and we will probably have to book it across the airport to catch our next flight. Breaking my chair is the equivalent of breaking your legs. There better not be any damage to my chair at that point because like Sweet Brown said, “ain’t nobody got time fo dat.” Like I said, I have just heard too many horror stories and know that no matter how thoroughly I explain what needs to be done, there is no guarantee that it will not have the possibility of somehow being damaged. It is simply out of my control and I just can’t stand it.

In addition to the flight, it is also making sure that the equipment gets delivered to the hotel prior to our arrival. Plus making sure the rental van gets there in a timely manner on Monday morning before I begin at Project Walk that afternoon. I’m definitely anxious about the traffic out there, especially after I was told it was worse than Atlanta and I absolutely despise Atlanta traffic. Fortunately, I was able to get a shuttle to take us from the airport to the hotel, which is about 40 miles, so I’m relieved we will not have to drive at night in an unfamiliar area after seven hours of traveling. Project Walk is located in Carlsbad and we are staying about 6 miles from facility in San Marcos, I believe about 30 miles from San Diego. I’m hoping the traffic will not be as bad where we will be staying, but I would really love to go to either San Diego or LA over the weekend. California has always been on my bucket list and I hate the thought of being so close to so many places I want to go and not taking advantage of it simply because of heavy traffic. But the thought of driving in such a busy place and not knowing where we’re going gives me so much anxiety that I would just rather avoid it; so, unless I can find different shuttle or accessible public transportation, we might just be sticking around Carlsbad. Of course, if it is just as beautiful in person as it is the pictures I’ve seen, I wouldn’t mind just sitting by the beach all weekend and enjoying the views.

Speaking of the beach, it might not be as warm as I had hoped. Based on what I’ve read on the Weather Channel and people I’ve talked to who are out in that area, it can be warm in the day and then cold at night, which is making it that much more difficult to pack. Then again, packing has been difficult already anyways because all the extra things I do have to bring that most normal able-bodied folks don’t have to worry about (medical supplies, equipment, etc.). I just made the decision not to bring my manual chair as a backup. It would be great to have it in the chance of anything happening to my power chair, but the thought of trying to bring that in addition to my three suitcases and Laura’s two just seems like a nightmare. Plus, there would have been the added stress of worrying about something happening to the manual chair as well.

I know I can do this. I have no doubt that I will get through it. Maybe not without a bottle of Xanax, but I will get through it and will be so proud of myself for it. I’ve been so stressed and anxious about the packing and traveling aspect that I have not even thought about how hard therapy may be! The next couple weeks will be tough, but I know it will be so worth it. I’m still in shock that I have this opportunity and so extremely grateful for it. When I was first contacted and told that somebody had donated the money for me to go, I just could not believe it. I thought for sure I was getting punk’d. Actually, I had a dream the other night that it was all a prank and when I got to California, nobody at Project Walk knew anything about me or why I was there. When I started seriously considering whether or not this trip was financially feasible, the challenge of the trip itself kept drawing me in. I feel like this is something I have to prove to myself, that I can be responsible and independent again. It is amazing how an injury like this can make you feel like a kid again and you realize that you subconsciously revert back to childhood feelings of helplessness and dependency. No matter how old I get, with my high level of injury, I can’t imagine ever feeling physically secure enough to not feel so vulnerable in my situation. I mean seriously, taking something from me is probably easier than taking something from a baby! I hope that by accomplishing such a daunting trip it will give me a boost of confidence and optimism in regards to reclaiming my independence because there are so many times it seems nearly impossible. This trip will be a test and I’m determined to pass with flying colors, even if it means having a couple panic attacks along the way.

Regardless of all my anxiety and nervousness, I am very excited about the trip. Like I said, California has always been on my bucket list so I cannot wait to see the Pacific Coast and get a taste of Cali life. I am also super stoked about the opportunity go to the original Project Walk after hearing so much about it. Not only am I looking forward to getting a second opinion, but also the chance to learn new techniques and exercises to help me in my recovery as well as the possibility to make new friends and meet new people. I look forward to writing again either during or after California and tell you how great everything is going and share all the photos and videos that we will be sure to take. Please keep me in your prayers as I finish preparing and packing for the trip and as we travel on Saturday out to the Golden State. Cali or bust!

The only way out is through. – Robert Frost

29Oct/138

We may lose a battle, but we will ultimately win the war..

October 29th, 2013

Oh my poor blog, I am so sorry I’ve been neglecting you. I promise, it’s not you, it’s me. And I wish I could say I’ve been super busy painting or exercising in anticipation for my trip to California in just 12 days, but that would be a lie. I guess I really just been busy enjoying the social life that a normal 26 year-old should have. There’s nothing wrong with that either, right??

With that being said, let me just give you a rundown of things that have been going on.

I’ve been enjoying a much-needed break from all the artwork. Prior to the beginning of October, I spent every day painting and preparing for the art festivals: Zonta, which was rescheduled to November 16 after the threat of a tropical storm; and the Dauphin Island Art Trail on October 12, which was a success. Feeling forced to paint so much in order to have a large stock for the festivals definitely leaves me burned out afterwards, so I have enjoyed taking some time off from the paintbrush for a while. After California, I am hoping to finally start working on custom orders that people have been asking for, but I will cross that bridge when it gets here.

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Project Walk, here I come!

As I mentioned earlier, I leave for California in just 12 days. Am I ready? No, not at all. I still think it will not seem real until I am on the plane. Regardless, the panic mode is starting to set in. I am mostly anxious about the flight and making sure all my ducks are in a row. This will be my first time flying since I’ve been in a wheelchair, so it is a whole new ballgame. It is the furthest I have traveled since my injury and the first time without my mom, so that makes it a little bit more unsettling. I have also been responsible for all the reservations and making sure everything is where it needs to be, when it needs to be there, so that makes me nervous as well. I have done all I can do and now it is out of my control. This is where I just need to put all my faith in God that everything will work out the way it is meant to be and that He will keep us safe in our travels.

And finally, saving the best for last is the news I received from Mississippi Medicaid a couple weeks ago. Evidently, Mississippi Medicaid considers donations to be counted as income. The fundraiser website I had set up to collect donations for my trip to Project Walk was linked to a PayPal account in my name. So when Medicaid decided to review my case to determine whether or not I was still eligible for coverage, they determined that the donations counted as income, therefore giving me too many resources and thus denying me Medicaid. (*Note- I am aware that there is something called a special needs trust to help protect my benefits, that is a whole other story that I don’t feel like getting into today)

First, let me say that it was my mistake to have the PayPal account in my name. I never intended to have that much in donations, which would’ve never occurred had it not been for this opportunity to go to California for more rehab – something that is not covered by Medicaid, anyways. But it blows my mind how donations, which is usually a one-time occurrence and not a steady source of revenue, can be considered a part of my income. Essentially, by those standards, any sort of cash gift/donation that you receive, even for Christmas or graduation, should be documented and counted as income. That really does leave me flabbergasted. Even as a fully functional and capable adult, I am not allowed to have access to the money I have raised or been donated. There are so many things that Mississippi Medicaid will not pay for, even when it was my primary insurance they did not pay for any of my equipment, not even a manual wheelchair; yet, when I raise my own money to pay for the things that they will not, I am penalized. It almost feels like you are damned if you do and damned if you don’t.

It really is very frustrating and disheartening to legitimately be in need of the program and be denied when there are so many people who abuse the system and are allowed to do so. I would love to know if the same stipulations for Medicaid also apply to people on food stamps and welfare. What also infuriates me is the fact that I could take advantage of other government assistance programs but I opt not to because I am not in legitimate need at the moment (although I may be one day when I live on my own). In fact, I fully intend to graduate college, have a career, and be a fully functional and contributing member of society and not need to be on Medicaid for the rest of my life. Unfortunately, for the time being, I do need the assistance of Medicaid to help cover the things that Medicare will not. It seems like if Medicaid/Medicare would pay for the therapy that I need to help me get back to where I need to be, then the sooner I would no longer depend on them for assistance. That makes sense, right??

So as of Friday, November 1, I will no longer have Medicaid as my secondary insurance, which will have a very negative impact on my life at the moment. In addition to paying more for doctors’ visits and medications, many of my medical supplies will no longer be covered and I will no longer qualify for having a personal care attendant to help give my mom some relief from being my primary caregiver. But my biggest concern about not having Medicaid is the fact that it will impact my decisions on the tentative surgeries I had planned to do this winter (bladder augmentation and tendon transfer). There is no way I can afford to pay out-of-pocket to cover what Medicare will not, so I may be forced to postpone the operations until I get a secondary insurance. I know all too well that we are on God’s time and not our own, but I was very hopeful to do these things this winter so that my recovery would be spent during the cold months that I probably would not be outside much anyways. Between the two surgeries, I am looking at 4-6 months of recovery and therapy, so it won’t be a quick and easy process. But unfortunately, there are just some things that are simply out of my control so I will just have to wait and see. When I was denied Medicaid in 2011, it took nearly 3 months for the appeal process, so there is no telling how long it will take this time.

I am appealing Medicaid’s decision to deny me coverage and have already been in contact with my state senator and representative to ask for their assistance. I’m currently waiting to hear back from Medicaid after faxing a list of documents they requested to determine whether or not they will reopen my case. Despite their decision, I truly believe the law needs to be changed. I don’t think that donations should be considered a part of your income, especially when you can show documented proof and receipts of the things that those donations are paying for (and even more especially when they are things that are not covered by Medicaid to begin with). I am fortunate that I was raised by an assertive mother who taught me never to take no for an answer and who is also fighting on my behalf. You better believe that we will not go down without a fight. But it does also make me sad for all the other people who are unfairly denied and may not realize that they can fight the decision. That is why I hope one day I can help change the legislature- not just for me, but for the thousands of others who are in legitimate need. I ask for your prayers as we fight the long and frustrating battles that we will endure over the next few weeks. If what doesn’t kill you makes you stronger, I should be able to bench press a bus by the time it’s all said and done.

“I ask not for a lighter burden, but for broader shoulders.” -Jewish Proverb

9Oct/130

So what had happened was…

October 9th, 2013

A couple of quick updates.

Today is exactly one month until I get on the plane for California to attend Project Walk. I have everything booked and reserved – airfare, hotel, rental van, shuttle service, rental equipment- there is a lot involved with traveling across the country in a wheelchair. I am super excited but also extremely nervous, mostly about flying and driving out there. I need to start preparing myself not just mentally but physically as well, but more on that later. The fundraiser website will be up until November 2nd. In addition, all the proceeds from the print and calendar sales will be going towards this trip. Which brings me to my next point: Zonta has been rescheduled.

The Pascagoula festival that I’ve been talking about for months was postponed this previous weekend because of Tropical Storm Karen (more like tropical disappointment). As most of you know, I have worked very hard and long on getting everything ready for the festival and I was depending on the money I earned there to go towards food, gas, attractions and souvenirs in Cali. But the possible threat of what was looking like a hurricane led to the decision to postpone the festival; for the record, it ended up not even raining on Saturday, but I understand they had to make the call and could not take the chance of a rainout. The good news is that it has been rescheduled and not just canceled. Zonta will now be Saturday, November 16. The bad news (for me) is that I will not be here for it! Go figure it gets rescheduled for when I will be in California. On the upside, however, my friends and family will do the booth for me so I will not completely miss out. I am heartbroken that I will not be there because it is as much a social event as anything else, but I’m so thankful that I have people who are willing to do it without me.

Art Trail Flyer

Art Trail Flyer

In addition to Zonta, there is also the Dauphin Island Art Trail this weekend. To see all the details, including the 30+ vendors that will be at 11 different locations on the island, check out this public event page on Facebook: 3rd Annual Dauphin Island Art Trail

Also, if you are on Pinterest please do me a big favor in helping me spread the word about my artwork and calendars for sale by re-pinning this post I created: Rehab for Katy on Pinterest. It only takes a few seconds and you never know who it may reach!

Other than preparing for art festivals, planning my trip to California, and my online classes, things have been relatively quiet around here. Think God for answered prayers because the pressure sore that I was concerned about in my last update is now almost nonexistent. Fortunately all it took was staying in bed for a few days and doing the proper wound care to allow that spot to heal before it became a serious problem. Knock on wood, I have not been sick or had any urinary tract infections in a few months so hopefully that trend will continue. And don’t be surprised if you come back next week and this website is completely different; I’ve been playing around with some different templates and hope to redesign this website soon – it’s overdue for a fresh new look.

Till next time -

30Sep/132

Today’s Lesson: Pressure Sores & Gratitude

September 30th, 2013

I have been telling myself to write an update for the last three days, but just couldn’t get into the writing groove. I get into a trance when I write, which requires good music, plenty of time, and my full focus. It’s a shame I haven’t written more because I have had plenty of down time considering I’ve been stuck in bed all weekend due to some skin breakdown on the spot where I had my previous pressure sore (PS) that kept me hospitalized so long after my injury. Ah, yes… One of spinal cord injury’s most dreaded enemies and dangerous foes: the demanding pressure sore. They say (whoever “they” are) “it’s not IF, but it’s WHEN you get a pressure sore.” Hey, I had my one PS already; been there, done that, got the shirt – aren’t I good to go??

Evidently not. Fortunately, we caught it early and it’s healing nicely, but unfortunately, there is only one thing to really do to heal a pressure sore: stay off that spot! And when your spot is on your bum, where they most commonly are, that means a lot of down time.

Just like the honey badger, pressure sore don’t care (I really hope somebody got that lame and almost outdated reference.) Pressure sores don’t care than I have two art festivals the next two Saturdays, taking two classes, planning a trip to California, meeting doctors and scheduling surgeries, and just having the so-called normal life of a 26 year old woman. When something like a pressure sore comes along, it doesn’t matter what you got going on in your life because it almost all comes to a complete stop. Plans get canceled, dates get postponed, rains checks are made. You really have to choose what you absolutely HAVE to get up for versus spending time in bed trying to heal. You do whatever you can early as possible to stay off of it, because once it gets bad, things can get scary.

I won’t give you a full blown lecture, but here’s a quick lesson about pressure sores (PS): PS is formed when pressure is on the same spot for too long and blood flow is cut off, therefore killing the cells and creating a wound. This is why you might see somebody in a wheelchair tilt really far forward/backward or shifting/lifting their butt up or around their chair. No, we’re not all super spastic. It is to relieve pressure and increase the circulation, thus decreasing formation of sores. It’s good to do every 30 min-1 hour. This is also why hospitals/nursing homes turn immobile people from side-to-side every two hours when they’re bedridden. The best cure for a pressure sore is to prevent it from ever happening.

Knock on wood, I’ve been fortunate that my skin has been great since my injury. I have a great cushion on my chair (RoHo shout-out!) and my memory foam mattress has never left a spot on my skin, even sleeping on one side all night. But you can also get it from things like sitting on hard surfaces, clothes being too tight, sliding on furniture or sheets (what I think I did), burns, or even something as simple as a button on the back pocket of your jeans (if you’re sitting in them all day). There’s 4 stages of PS to grade their condition. Stage 1 & 2 takes weeks to heal and stages 3 & 4 can takes many months or even years to completely recover. Not to mention how easy it is for them to become infected. Christopher Reeve died from cardiac arrest as a result from an infected wound that caused sepsis. If he can succumb to it, anyone can. It’s just one of the fun perks when you begin your membership in the wheelchair club and no one gets left out of the festivities in this club. Remember: It’s not if, it’s when. Just the nature of the beast.

So, I told you all that just so I could tell you about my “A-ha” moment that I had today that I wanted to share – more specifically my Facebook status. This was my status I posted today (Monday afternoon): “I got to get up for 5 WHOLE hours today and it was the most glorious thing ever! Oh the things we take for granted. You can write that one down, folks.”

20130930-170637.jpgAnd it really just kind of hit me, all the things we take for granted. I was SO happy and grateful I got to get up today, if just for 5 hours. After 36 hours straight in bed, 5 hours in my chair and out of my room saved my sanity (or what little may be left). People might think it’d be great to be in bed all day or even the whole weekend, but when you are absolutely unable to get up at all, it really isn’t so great. It is downright miserable. MIS-ER-A-BLE. How is it possible for your body to get so stiff and sore in just a few days? It is surreal to think I did this for THREE MONTHS after my injury. And there are folks who have done it for much longer! That kind of isolation really gets to ya. There’s only so much you can do to distract the mind from thinking too much and anyone who knows me knows that social interaction is crucial to my well-being.

But just take a minute to think how excited and relieved I was just to get out of my bed for a few hours. Does that make you think about the things you take for granted? Ever think how lucky you are to be able to get out of bed all day? Because it even made me think of other people dealing with what I deal with or worse and knowing that there are folks who can’t get up AT ALL. How blessed am I to get up for 5 hours when some don’t even get that. Sometimes all it takes is a little perspective to change a whole lot of attitudes.

Hopefully, if I keep off of it a couple weeks now to let it heal, I won’t be paying double the price a couple months from now when I would really be confined to bed. No thank you, I have too much stuff to do! Although I’ve had a chance to get a lot of school work done on my laptop while in bed, do you know how hard it is to be productive in bed?? Nap usually beats schoolwork 8 times out of 10. Hey man, my bed is way too cozy and comfortable to resist its temptress spirit snuggling me tight and pulling me deep undercover. Sorry not sorry.

With that being said, I better round this up. As usual, it came out wayyy longer than I expected and I didn’t even talk about what I was originally going to discuss (I’ll save that for another day in bed later this week). I was very lucky that I had all my stuff done for the art festivals that I had to do. Everything else are things my friends/family have to help with, like packaging, or was just extra stuff for me to do just to have. But 300 calendars ($13 a calendar), 130 prints ($15 a print), 100 notecard sets ($5 for set of 10 notecards), 50+ painted canvases ($20-$75 varies by content/size/frame), and some wooden wall sets ($23) is probably enough, plus two framed canvases are going to be raffled off for just $1 a ticket. So if you’re local to the coast, come see me at Zonta this Saturday, October 5, in downtown Pascagoula!

Thanks for reading. I never know who all reads it, but regardless it sure is therapeutic for me to write, which is why I’ll continue… But hopefully I can help, comfort, educate, or influence a few along the way. And be sure to count your blessings tonight. It’s a great way to start the week.

When it comes to life the critical thing is whether you take things for granted or take them with gratitude.”