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The Surgery Saga

Oh boy, here we go.

Blog Update: Attempt Number ??? – Lost Count

Has it really been six months since my last post!? I cannot tell you how many times I have started writing an update and then for some reason or another, never finished it. Hard to believe that half a year behind us already. 2015 definitely started off with a bang and is still firing them at me fast. If you care or curious to hear allllllll about it (and then some) please… sit for a spell and enjoy this lengthy, rambling, overly-detailed, descriptive narrative that explains everything… And then some more again.

I know I have followers here who are not on social media and  probably completely unaware of everything that’s occurred; therefore, let’s travel back to January and I’ll do my best with the concise Cliff Notes version of the craziness that’s consumed my life thus far in 2015.

Preface: If you need a reminder of what surgeries I’m talking about, you can read a much more detailed description by clicking the links below. Eventually, I plan to create a separate page solely dedicated to my personal experience, explain my process, share some tips and techniques, and answer any questions that can educate and hopefully help others considering these surgeries. I learn the hard way that, surprisingly, there’s limited information available from people who have had both procedures- especially the bowel part because it’s more uncommon and mostly done to children born with neurogenic bowels (which is why I had to have a pediatric urologist). Additionally, it is even more difficult to find someone with SCI who has the bowel procedure done, much less both the bowel and bladder. Maybe I’m patient zero. That being said, I sincerely hope that sharing my surgery experience can help someone else. But for now, we’ll have to settle for the Google results I found:

Mitrofanoff Procedure (bladder)

MACE or ACE Malone (bowel)

Basic purpose- creating 2 separate stomas in my abdomen, one to access the bowel and one for the bladder, that will give me the ability to have control over my own B&B care; thus, increasing my independence and giving me more dignity and privacy to take care of myself without as much assistance. An intermittent catheter (in-and-out cath) are used for both stomas, therefore requiring no bags or permanent attachments to maintain/conceal (no colostomy or bladder bags).

Got it?

Ok. Are you ready? Here we go!

So in my last post, I mentioned that this much-anticipated and repeatedly-rescheduled surgery originally set for January 8th ended up being postponed yet again. It probably seemed like a cruel joke considering how many times this has happened; unfortunately, there was no laughter during the 24 hours we spent at Ochsner before the cancellation. By the way, I use the word saga for a reason- because that is what it turned into. And even with as much as I’m telling you today, I’m still leaving out a lot.

So, what happened?

As in a previous attempt, another unsuccessful complete bowel cleanse prevented the doctors from performing the procedure. What upsets me most, however, are the circumstances that lead to the cancellation.

I’m sure anybody who has followed me from the beginning and knows all the issues I’ve had with this, probably thinks I must be full of crap -literally. I say that because it seems like it’s always a problem with the bowel cleanse. For the record, if that was TMI for you, you might want to reconsider reading a blog about bowel surgery… Just for future reference. Anyway,  moving on.

Looks comfortable, right?

Looks comfortable, right?

If I were to guess, I’d say stress, anxiety, and a tight time table is probably the reason I always seem to have trouble. Because we knew this was an issue, I scheduled to arrive almost 24 hours before my procedure, just to make sure we allowed MORE than enough time to complete the cleanse. On the plus side, I knew I’d be getting the GoLytely through a NG tube, which should mean ingesting it quicker. After my last experience of trying to drink that stuff, I would opt to have a tube shoved up my nose and down my throat any day. Besides, I knew it would likely take more than just the minimum dosage of 4 freaking liters of GoLytely, so time was of the essence.

Despite arriving at Ochsner’s admissions before my scheduled 9am check-in on January 7, my mom and I sat waiting for over five hours until my room was ready. It was well after 3 o’clock that afternoon before I finally got into my room, so it was nearly 5pm before they started administering the GoLytely. And just as I suspected, it would take more than just the devil’s drink to have a completely successful cleanse. Unfortunately, the severe delay in admissions resulting in  lack of time -not to mention dealing with a staff that seemed unfamiliar with spinal cord injury patients- meant that I was unable to do the bowel prep within the allotted time; therefore, I was unable to have the procedure on January 8th. I was told it would be canceled about an hour before it was supposed to start.

Well… Crap.

All jokes aside, I was extremely upset. My doctor was unhappy. My mom was angry. This should not have happened. I cried. A lot. Talk about wondering if it was a sign from God. This was the third or fourth time it’s been abruptly canceled… The second of which I had gone through the entire process of ingesting the GoLytely… All for nothing. It was very difficult not to question my decision of whether or not it was the right choice for me at that moment. It seemed like something in the universe did not want me to have that surgery for the longest time. Despite any doubts, I rescheduled yet again for January 29th.

Hey, fourth or fifth time is the charm, right?

Well evidently, for this girl, it is. You read that right…. Yes, finally, after many failed attempts, it FINALLY happened. Here’s your official announcement:

On Thursday, January 29, 2015, in New Orleans, Louisiana, at Ochsner’s hospital, at whatever time, after 4-5 hours in the operating room, Kathleen (Katy) Ann Blake did indeed successfully have both the Mitrofanoff bladder procedure and the MACE bowel procedure completed.

I feel like I need the official town crier reading from a script. Just so you know it’s legit. Or a certificate, at the very least.

Gnarly scars (stomas under bandaids)

Gnarly scars
(stomas are under band-aids)

And if I thought just trying to HAVE the surgery was difficult, then I should have been better prepared for what a whirlwind the recovery would be. The real fun was just beginning…

I may have mentioned before that one of my favorite mottos is, “hope for the best but expect the worst.” Although optimistic, I always try to be level-headed and keep it real. Based off stories I’ve read online and talking to other people who have had these surgeries, I expected the recovery to be pretty bad… but as always, I had to take it a step further and turn “pretty bad” into “pretty freaking miserable.” Here’s what happened after getting out  of surgery.

I ended up spending a total of 10 days in the hospital, 8 of them being NPO (nothing by mouth), which was okay at times, because I was in so much pain in the abdomen area that I didn’t even want to move, much less eat. Besides, there was a period of waiting for my bowels to “wake up” after the surgery. You have to take into consideration that the doctors basically rerouted all my internal plumbing. My body didn’t know what to do. So as much as I love my food, eating was the last thing on my mind for days after the surgery. Unsurprisingly, I unintentionally lost quite a few pounds during the immediate recovery. I looked pretty sickly for a hot minute. Fortunately, my love of food did not let that last too long.

Upon returning home after 10 days, appetite in tow, we discovered a stage 2 pressure sore on my bottom. Actual broken skin. Don’t even get me started on how angry I was. Or am, as it is still an ongoing issue that I am dealing with to this day. Yes, I requested the air rotating mattress before I was ever admitted. I asked about it every single day for 10 days in a row. No, I never got it.

What about the nursing staff?? I thought they were turning me, even though in the back of my mind I think I knew it was not enough. Not that it’s a good excuse, but between being in so much pain or being knocked out from the pain medicine, I probably did not call out for them to move me on my side as much as I should have. Then again, should I have to tell them how to do their job? All nurses/aids should know you’re supposed to turn every 2-4 hours, that is nothing new. I should not have to be responsible for making sure this was done properly, but obviously I should’ve been, as I am the one paying the price even still. But I guess it does me no good now to cry over spilled milk, or a little broken skin.

Little did I know, the sore would be the first of many obstacles to overcome. It also led to other issues, although the sore was probably the worst – mainly because I still have it and it’s still causing issues. Something so easily preventable that I never imagined happening. But I digress… Let’s get back to the rest of the fun recovery process. We’re just getting started, my friends.

Shortly after coming home, I had home health to monitor the progress of the stomas, I came home with two indwelling catheters in both holes to keep them open as they healed. Although I do have photos that I could share, I will save those for the separate page I plan to create and to avoid surprising anybody who doesn’t want to see. I don’t know how squeamish some folks are. Also, I still had a supra public catheter because I would not start doing my new bladder program until after my first post-op appointment a few weeks later, when the indwelling catheter could be removed from the new stoma. Meanwhile, I could immediately begin the new bowel regime using the indwelling catheter.

Just like any surgery site, I had to keep it very clean and watch for any signs of infection. There was a short time  when the stomas became very red and irritated, with the occasional ooze, that immediately got tested for infection. Fortunately, it came back all clear, but not before I started having blood clots coming through the suprapubic catheter. Considering how soon I was post-op, it definitely gave me cause for concern, but also fortunately turned out to be nothing serious.

At that point, I felt like I got away too easy. Aside from the pressure sore, I had dodged two bullets- no infection and no blood clots. I should have known that meant a big whammy was coming my way.

I mentioned that I will spare you the dirty details and TMI, but just to preface this next story, let me give you a little background. During this process, I believe now it was around early March so I had been home about 3-4 weeks, I was gradually trying to get into a new routine with my new functions. Basically, I was having to retrain my body to work in a new way, and that isn’t easy. It is a very timely and tricky process, with no real guidelines and no good directions, pretty much trying to figure it out as you go. And it’s difficult for each individual, based off what works best for you, your lifestyle, and how your body functions. I wish I had good instructions or even some inkling of an idea of what I was doing, but I really had to learn along the way. Sure, my doctors gave me some general advice, but even they couldn’t definitively say what exactly I needed to be done and how/when it should be done and in what way it should be done. That makes sense, right? Besides, remember how I told you how difficult it was to find good resources and information? This was when I struggled the most. I guess what I’m saying is I had no clue what I was doing, other than trying to retrain my new bladder/bowel function to work in a different way at a different time. There are bound to be accidents. And not the Bob Ross kind of happy little accidents.

No, it’s one of the crappy parts (pun totally intended) of spinal cord injury. Another small part of the life of living with a neurogenic bowel and bladder, which can occur a multitude of ways, not just SCI. Accidents happen. I feel like most people know that, but I’m sure this is news to somebody out there reading this. Hey, no matter who you are, we all gotta go. This is when a sense of humor is critical. Anyway, moving on.

I tell you all that so you understand where I’m coming from when I talk about the next complication I experienced, which is by far one of the worst feelings of sickness I have ever experienced in my life. It is something I don’t think I would even wish on my worst enemy, it was that bad. So this whole time that I’m trying to retrain my new body functions, I have no real guidance or knowledge of what is right or wrong when it comes to how much is enough? Is it too much? Not enough? Am I doing it too often? Should I wait longer? Do I need more? Or less? Should there be more or less?

Obviously lots of unanswered questions. And even though I was around a month out from surgery, I was still having a finicky appetite, accompanied by the occasional nausea, something I had a LOT immediately after surgery and since coming home. In case you’re unaware, because of my weakened diaphragm and stomach muscles with a high level SCI, I no longer have the ability to actually throw up. Sorry squeamish people. The best I can do is some awful sounding dry-heaving, maybe spit up something if I’m lucky. Lovely visual, I know.

To be perfectly honest, it is not unusual for me to have a finicky appetite or deal with the occasional dry-heaving spell, sometimes right out of the blue. So I guess it did not seem out of the ordinary in late February when I started getting sick, with what I first thought started as UTI, feeling lethargic and achy with the occasional low temperature. As the days went by and I started getting worse, my mom and my home health nurse thought perhaps I got a stomach bug as I was having bowel issues and then began actually throwing up, unable to keep down the basics, like water. If nothing else, I thought perhaps it was just a complication from trying to retrain my new body functions and not having the best success cleaning out. That seemed to make sense at the time. In case you’re unaware, constipation can make you feel really awful. Besides, the last thing I wanted to do was go to the hospital. By that point, I had enough of hospitals. Stomach bugs only last so long, right?

Turns out it was more than a bug.

Cut me some slack because my details are a little blurry now that it’s been a few months, so I don’t remember what day it started, but I know it was a Saturday that I was feeling awful and throwing up. Plus, I remember that Sunday being super stormy and going on a Netflix binge. I vaguely recall making a joke about it being a weekend and my doctor being closed, because it seems like my medical emergencies always happen at the most in opportune times (I mean, are there ever really any good times to have a medical emergency?) That and my GP would be closed on Monday and then I was actually scheduled for my first post-op at Ochsner’s on Tuesday. So you better believe the last thing I wanted to do on a stormy weekend was go to the local hospital where they would have no clue what to do with me and would likely look at my surgery site like I’ve been abducted by aliens. Surely I could hold out until Tuesday, I thought. Surely I would be regretting that…

And indeed I did regret it all. Immediately after and still to this day as I’m haunted by the memories I’m about to share with you.

After waking up early that Tuesday morning in order to get up, showered, and get on the road for New Orleans, I knew before I got out of the shower that there was no way I would make it to New Orleans that day. Not in the condition I was in. At that point, I wasn’t sure I could make it to the end of the day. I don’t even feel like I’m being that dramatic, I was just really that sick. I had not eaten in days. I was still throwing up. I don’t even know what I was throwing up, considering there’s no way there could have been much left in my system. Even though I was trying to drink water, Gatorade, and Sprite to stay hydrated, I kept throwing up liquids too. If this was a stomach bug, it had well overstayed it’s 24-48 hour time period. Whatever this was had to be evicted ASAP.

Once I realized there was no way I can make the drive for my follow-up at Ochsners, I called to reschedule. A few moments later, my phone rang with my doctor on the other end (FYI, this is one of the surgeons who I was supposed to see that day). I had been calling his nurse the week before when I began feeling sick and also with other minor  issues, so they already knew something was going on prior to my cancellation. After telling him my symptoms, he immediately told me I had a bowel obstruction and I needed to go to the local hospital as soon as possible.

Well… Crap. Again.

I think it was caused by a combination of things… Of course going through the process of retraining my body/adjusting to a new routine since all my plumbing had been rerouted contributed, no doubt. It is a very difficult thing to do and I had no direction or guidance to know if I was doing it right or not. In addition, all the scar tissue in that area from the surgery could definitely have some effect.

But, to me, what really added insult to injury, or salt to the wound, would be the wound itself- the one on my bottom. Having that stage 2 pressure sore meant I had been staying in bed and on my side in order to get off of the sore so it could heal. While I didn’t necessarily mind staying in bed when I was healing, in pain, and sick, there are consequences to being so consistently sedentary. Humans are not meant to be so still. And one of the side effects to staying in bed so much and not getting up is constipation. Low and behold, constipation can lead to a bowel obstruction. A lot of the things I mentioned can cause a bowel obstruction. Whatever the cause, all I know is I never want to experience another one because that was one of the worst sicknesses I have ever felt. From what I recall, because that week is definitely a little hazy, aside from constipation and nauseous, my symptoms were all flu-like… Times infinity. Infinity plus one. There are not enough numbers – off the charts.

By the way, remember the comment earlier about having no idea what liquid I was throwing up because there was nothing in my system? I purposely left out a minor detail- it was brown. Don’t make me say it out loud, I’m sure you can figure it out. You know what they say, “what goes in, must come out.” Overcoming any and all obstacles, I guess it will find a way out – no matter what. I don’t think I can emphasize enough how awful it was, how horrible I felt, how much I hurt, and how terrible it tasted. Seriously, would not even wish that on my worst enemy. Ugggghhh. No matter how hard I try, I will never forget. Ok ok ok, I gotta stop. Yuck.

Back to my concise Cliff Notes blog update. Please note the sarcasm in that statement. What’s up, world? It’s 2015, there should be a sarcastic font style by now.

I couldn’t resist elaborating on the bowel obstruction story… Seriously y’all, I find myself in the craziest situations that are just too funny (for lack of a better word). Sometimes I look around and wonder when the hidden cameras are going to come out, to find out that I’m being Punk’d. All I know is it’s a good thing that God gave me a sense of humor, which I credit to be the baby of seven kids. You can’t grow up with six older siblings and not come out a little crazy. And Lord knows that the little bit of crazy in me helps me cope more than anything else.

All joking aside, getting back to the actual update part of this blog. So now I’m in early March, after the bowel obstruction fiasco, which ended up in a 5 night (I think?) stay at Singing River Hospital. I even got the joy of having another NG tube shoved up my nose, which was fiiiine by me as long as it meant no more upchucking. Needless to say, with all the stress and sickness since the surgery, many moments and memories of the last few months are a little hazy, so all the specifics are a bit blurry. Except for what happened the week after my bowel obstruction.

It was Friday the 13th, to be exact. A super-soaked, nasty, dreary, and stormy Friday the 13th. I remember the weather conditions so well because I had to call my doctor in New Orleans for an emergency situation and they wanted me to drive two hours in the treacherous wind and rain. No way, Jose! Besides, this one was on them because I had simply followed their instructions. The instructions were to insert a catheter every other day into the new ACE stoma. Between the bowel obstruction and Friday the 13th, I had my post-op at Ochsner where they removed both indwelling catheters. I thought surely I would need to insert something into it everyday, but I was assured that it would not close over that quickly. Apparently, I like to defy the odds.

Because..

IT FREAKING CLOSED UP.

Sorry, I get a little worked up when I think about it. Again, another thing that should not of happened. But that’s life, right? On the bright side, it did not require another big surgery to re-open the stoma, which was our main concern and least favorable outcome. Just a one night stay at Ochsner, followed by a little anesthesia and a scope by the docs to reinsert a catheter to stay in for another few weeks until it healed (again). Hey, just another adventure to add to the books.

Evidently, I have a very narrow appendix (which was used to create the bowel stoma); furthermore, my doctors are still baffled at how it managed to close so fast. Meanwhile, I’m baffled as to how it takes months for a pressure sore to heal, but that sucker closed up in 24 hours. That steroid cream they gave me for it must be a miracle cure-all.

So, to summarize, aside from the physical pain immediately after surgery, the still-present pressure sore, possible skin infection, potential blood clots, impacted by the bowel obstruction, and the ACE stoma closing up -a total of 16 nights spent inpatient between 2 different hospitals on 3 different occasions- I guess overall it wasn’t so bad.

I’m sorry, that’s a lie. The recovery was awful. That’s not to say it wasn’t worth it, because it totally was, but it was a hellish few months. Way worse than I ever expected. It wasn’t until April 1st that I felt fully recovered. And even though I have still have some minor issues with it every now and then, having both procedures has dramatically changed my quality of life and independence for the better. I can’t stress that enough. Plus yall know that I gotta make everything difficult anyway, so don’t let my experience scare you. Regardless of all the complications I faced, I’m still 100% happy that I did it. Very, very happy.

Finally.

It is DONE!

Can I get a hallelujah?

Better yet, save that hallelujah for the end of this blog post, which I promise is coming soon, although there is more “new news” to talk about. You didn’t really believe all that concise Cliff Note stuff, right? Y’all should know better by now.

My first cruise

In the driver’s seat

While the surgery recovery has taken up most of my time and energy for the first 4-5 months of 2015, it hasn’t been the only thing going on in my life. I also got my van modified/corrected/re-corrected again for hopefully the last time. I’m currently waiting on some chair mods to help support me better before I’m really able to drive on my own (or practice, anyway), so that’s been a slight setback. Rest easy, Pascagoula, I won’t be on the roads alone any time soon.

Then again, with my tendon transfer arm surgery scheduled less than a week away (Monday, June 22, to be exact), I will be unable to drive for the next 3-4 months anyway as I’m recovering and regaining the use of my left arm.

Showing off my guns

Showing off my guns

And considering that arm controls the gas and brake, I really kinda need it in order to drive. So I’m preparing for that to happen very soon, which has been stressful. Speaking of arms, check out this bad boy —->

Otherwise, I’ve just been enjoying the last few months with my awesome boyfriend.

Oh, did I not mention that last part yet?

Oh well, guess I’ll have lots to talk about in my next update… and I promise it will be sooner than 6 months. Especially if it means never having to write this long of a post again. I don’t even think I have it in me to go back and edit this blog-turned-book. My apologies to all the grammar Nazis.

By the way! I almost forgot… I’m officially an EasyStand writer, now that my first -and so far, only- article has been published. This was my intro piece discussing my background and a detailed description about the day of my accident. If you made it this far and you’re still not tired of hearing me ramble, go check it out here: The Day that I Dived

One more thing- Can you believe that June 13 made 5 years for what I endearingly call my “crippleversary” or the anniversary of my accident. Crazy how I remember that fateful day as if though it were yesterday. Life is funny… I’m just eternally grateful that I’m still alive to laugh at it. As well as extremely thankful for all the continued love and support I receive from my family, friends, community, and online. No way that I would have made it this far without y’all.

Now is the time to shout your hallelujahs. You made it to the end.
Bless you, whoever you are.

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Calendar Discount – Now just $10!

I know I am long overdue for an update, especially considering everything that has happened the last two months. Which, in case you haven’t heard, the major bowel and bladder surgery that was scheduled for January 8 was abruptly canceled the morning of after a series of unfortunate events. I promise a more in-depth blog of all the dirty details very soon.

Today, however, I wanted to share that I have put my calendars on sale for just $10 ($12 with shipping) in order to finish selling what I have left in stock. Due to my own lack of tenacity in advertising and salesmanship, I have been left with a larger stock than I need and know that time is running out for anybody interested in a 2015 calendar.

So if you thought you missed out because the New Year has passed, don’t miss this opportunity to purchase your 2015 calendar for just $10. To see more of the calendar and how to order, you may click here or visit the calendar page on the menu to the left side of the page.

I promise I will be back soon for a nice long blog with all the exciting and some not-so-exciting details of my life, the failed surgery attempt, and what’s next in the progress of my recovery.

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Exciting Updates

Happy Monday! Sorry it has been so long since my last post- there are just not enough hours in a day to do everything I want to do! Besides, I’m still not used to this time change and absolutely dread the early sunset that makes the night seem so long. I have seriously contemplated hibernating until March, but ain’t nobody got time fo’ dat (thank you for that, Sweet Brown). Anyways, I have lots of exciting things that I wanted to share in what was originally going to be a Facebook post until I saw how long it would be, so here I am. Without further adieu, let’s get started!

First off, I am relieved to say that I finally have my major bowel/bladder surgery rescheduled on January 8 2015, at Ochsner’s in New Orleans. I have already started praying that hopefully this third time is the charm and there will be no other unexpected complications or any more postponing. It is crazy to think that the first attempt of having this procedure was in January 2012 and here I am, almost 3 years later, waiting to try again. In fact, the first failed surgery attempt three years ago was the catalyst for me to begin painting and look where that ended up! Just another sign from God that everything really does happen for a reason, even if you cannot see it in that moment. You may not recall, but this was the same surgery I also had scheduled for June 16 of this year, which unfortunately got canceled a second time because of all the issues with my hip. Now that those problems are mostly resolved, I can start to move forward again. Given the circumstances of the last two attempts, I am understandably anxious about trying to have this procedure. Regardless, I know it is the next big step I need in order to regain my independence and cannot avoid it forever. Needless to say, I will be so relieved when it’s all said and done.

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In my EasyStand Evolv

In other news, even more exciting to announce, is I’ve been offered the opportunity to write blogs for EasyStand. If you have been on my Facebook page lately, I’m sure you have noticed me posting more photos of me in my standing frame as I’m able to utilize it at physical therapy. Fortunately, thanks to the power of social media, EasyStand reached out to me about the possibility of writing articles for their website and it did not take any time at all for me to happily accept. I love writing my blogs anyway and this will be a great opportunity to encourage myself to write more, in addition to hopefully raise awareness and educate more about spinal cord injuries to a much larger audience. Writing has always been a passion of mine and especially now where I feel like I am in a position to make a difference, whether it be educating and raising awareness about spinal cord injury or the daily struggles of living with the physical disability. I’m very excited to get my foot in the door (wheel in the door?) as this may be a stepping stone to bigger and better things and even possibly affect my decision of what to study when I am ready to go back for my bachelor’s degree. But I will cross that bridge when I get there. Right now I am just excited to take this opportunity that has been given to me and look forward to focusing on writing more.

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Festival Flyer

Between physical therapy, blogging, and preparing for the surgery, I am still trying to paint here and there (which has been more there than here). In fact, if you are local to the Gulf Coast, I will be at the H&H Chevron in Wade (on Hwy 63 near the 614 intersection) this Saturday, November 15, from 9 to 5. It is the second annual Mistletoe Market and will feature 15 to 20 local arts and crafts vendors and is open to the public. Don’t forget if you are not local or unable to make it out Saturday, you can find everything I have available to buy on here. With Thanksgiving fast approaching, remember that Christmas is right around the corner!  Whether it is calendars, note cards, or my prints -I currently do not have any original canvases available to buy online yet- my affordable artwork can make great teachers gift or stocking stuffers! The most popular items -the calendars and note cards- are going fast, so don’t wait til the last minute!

Finally, in case you’re not on Facebook, I shared a video I made for my physical therapist to show off my bed mobility; additionally, it is also a good starting point for documenting my progress and showing how I am able to maneuver my paralyzed body. I was very self-conscious to share this video publicly because it feels so personal and intimate (considering I made it right after a shower with my hair still wet, no makeup, and in my bed) but I got such positive feedback from people that it encouraged me to post it here. I am trying to get myself more comfortable with being on camera and have so many ideas of videos I want to create for different purposes, whether it’s paint and makeup tutorials or something goofy and silly like a “pimp my chair” segment. Who knows what I will come up with next. Please feel free to share any ideas of anything you would like to see.

I think that pretty much wraps it up for now. The last few weeks have consisted of going to physical therapy three days a week, trying to get everything in my life organized and scheduled (I am still in the process of getting my van modifications corrected), and enjoying my social life and the beautiful weather before the cold settles in. There’s simply not enough hours in the day and it’s hard to believe that the holidays are already upon us. I look forward to ending this year on a high note after such a rocky road this past summer was and I will be ready to start the new year off with a bang with having my surgery. My long-term goals are to have the bowel and bladder surgery, followed by the tendon transfer surgery in my left arm. Ideally, my van modifications will be corrected and completed during that time as well. I believe the arm surgery will be a huge help in regards to my driving. Once I get through those recoveries, I would like to go for another round of rehab at Shepherd with my newly gained abilities so that I can seriously began the scary process of moving out on my own again. I am constantly reminding myself that recovery is a lifelong process and takes time and patience, but I will admit that patience has never been a virtue of mine and I am anxious and beyond ready to move on with my life and once again be an independent, contributing member of society. One day at a time.

Because I can never say it enough, thank you so much to everybody who continues to follow and support my journey of recovery and regaining my life after such a traumatic event. It has not been the easiest adjustment by any means, but I’m beyond blessed to have such an incredible support system that never fails to lift me up when I’m down. My only wish is that I can somehow pay it forward and always remember to stay humble, thankful, and optimistic. Even on my toughest days, I am constantly reminded that I’m too blessed to be stressed.
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PicMonkey Collage

Art on Wheels

Or, as I like to call it, the artist formerly known as Rehab for Katy.

I have been talking about it for months and I have finally made the change- I want to move beyond ‘Help Katy Back to Rehab’ and shift the focus more towards my life as a developing new artist, still regaining my independence and life back since my spinal cord injury in 2010. Once upon a time, when I first started my online journey, my sole focus was going to rehab and trying to get as much recovery and regain as much lost function as possible, with the lofty dream of perhaps even walking again. While I will never give up hope for a cure or ever lose the faith that a miracle may one day happen, I am finally to point in my life where it is more important for me to regain my independence and move on with my life, even if that means doing it on four wheels instead of two legs. And although I do still plan on taking more trips for additional rehab, hopefully both at Shepherd and Project Walk, I also intend to live my life as normally as possible and embrace the abilities I do have that will enable be to be happy and fulfill my goals and dreams, in spite of my disability. So with all that being said, I will say goodbye to Rehab for Katy and look forward to my new journey as Art on Wheels.

In addition to the name change and website design, I have finally managed to get everything uploaded and organized so that it is all available to purchase online- calendars, prints, note cards, and Christmas cards! I will be doing some more tweaking and reformatting to my website over the next couple of weeks, but you can still find the links to the artwork on the left side of the page. To my knowledge, with the exception of the leftover original canvases, I have absolutely everything -old and new- available to purchase either online or locally. Also, if you are on the Gulf Coast, I will have my calendars available at some local businesses starting next month. If you are somebody you know would be interested in advertising or selling my calendars at your place of business, please do not hesitate to contact me through my website or email. I truly appreciate anybody willing to help me in any way, shape, or form.

In regards to what is currently going on in my life, aside from the artwork and website, I am currently doing physical therapy three times a week for two hours a day. Now that the hip issue saga is finally almost completely resolved, I look forward to moving on in my recovery and regaining a lot of the strength that I’ve lost over the summer. Furthermore, I am waiting to meet with my doctor in New Orleans to reschedule the bowel and bladder surgery, which will hopefully be before the end of the year. Tentatively, my long-term goals include getting through all the surgeries (first the bowel and bladder and then the tendon transfer in my left arm), going for another round of rehab at Shepherd with my newly acquired skills and abilities, and -hopefully within that time- finally getting my van correctly modified so that I can be driving independently. I find that these are the big obstacles I must overcome before I can consider the possibility of moving out, returning to school as an on-campus student, and hopefully finding a suitable job. But I will cross that bridge when I get there. In the meantime, I look forward to working on my physical fitness and being able to get out and participate more in my community. I also hope to start recording more videos of various different things: exercising, showing ways to adapt so I’m able to do activities of daily living, documenting my progress, makeup and art tutorials, and just some fun and goofy videos. Not only do I hope to provide entertainment, but I also want to raise awareness and help teach valuable lessons about spinal cord injury and people with disabilities in general. There is no telling what kind of things I may come up with!

With all that said, before I continue to ramble on any longer, thank you all for your patience as I’ve been working to get everything available online while also trying to redesign my website and create my new image. And because I feel like I can never say it enough, thank you so much to everybody who has continued to follow and support me on my journey of recovery and learning to live this new life. I never imagined what a crazy ride it would be when I first started Help Katy Back to Rehab in 2011 and I’m eternally grateful for everybody who has ridden along with me. I hope that even now, as I continue to evolve and grow into a person and artist who is focused more on independence rather than full recovery, you will continue to tag along and give me the privilege to teach you more about life with a disability and the tenacity, perseverance, and faith it takes to never give up. My wish is that any and every person who has my artwork is reminded of that every time they see it. Speaking of the artwork, what are you waiting for?? Go check it out!

 

chevronowl066  – 2015 Inspirational Calendars – Standard size wall calendar for the year of 2015 that features all new (and improved) original artwork and various motivational quotes for each month. Only $13 locally or $15 with shipping

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FullSizeRender  – High-quality matted prints of the original canvases, now featuring almost 60 different designs to choose from! Printed on 8×10 professional photo paper and packaged in the white matting, measuring a standard 11×14. Looks great in an inexpensive frame that can be purchased at Walmart. A steal at only $15 plus shipping and handling

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photo 1(1)  – Blank Note Cards featuring original artwork are great for any occasion or make unique and inexpensive gifts – over 20 designs to choose from! 10 cards and envelopes for just $5 locally or $7.50 with shipping and handling (unfortunately, postage has gone up slightly, so I had to adjust my prices to cover the inflation.)

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Nativity Scene  – NEW – By popular demand, I have designed three different Christmas cards that also include a holiday greeting printed on the inside. You will also have the option to personalize your cards with a salutation or your name when you order more than three packs. Depending on the success of the Christmas cards this year, I intend to work on more for next year to include all religious and generic Christmas themes so that everyone can find something suitable for their taste and beliefs. Just like the other note cards, a pack of 10 cards and envelopes is only $5 plus the $2.50 for shipping and handling.

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Slowly but surely..

Just a real quick post to let everyone know that although I am still under construction with redesigning my website, I do finally have the new calendars up for sale and ready to purchase. In addition, I am still in the progress of uploading all the new prints and notecards that will be available for sale and hope to have it done by the end of the week. Thank you for your patience!

So long, sweet summer…

And good riddance! Needless to say, the summer of 2014 was not a good one for me; unforgettable for the wrong reasons. I would be inclined to say it was my worst, but I suppose that award automatically goes to 2010, with my accident occurring on June 13 and not coming home until October 5 (hey, least I was in the AC). Summer of 2014 is the next runner up, though.

I don’t think I need to go back and rehash all the depressing details of my summer -it’s hard enough to read my previous blogs at times- but with the hip issue and hospital horrors, it’s one that I’m glad to see go. And it seems that with a fresh, new season has also come a fresh, renewed strength, hope, outlook, and perspective. It’s obvious from my previous blogs and Facebook that I have had more than my fair share of pity parties and hopelessness these last few months; which I guess is to be understood with the constant, chronic pain I was experiencing and the frustrations of dealing with so many different doctors, tests, and lack of diagnosis or treatment for so long. I’ve learned first-hand just how truly detrimental persistent physical pain can be to a person’s mental state. That’s a lesson I hope most people don’t have to learn themselves, because sadly, there are those that don’t come out unscathed or even at all.

To be completely honest, I have struggled with a lot of depression this summer. For a long time, I was in denial about it. Part of me wanted to believe I was mentally stronger than that; that my situation was solely based on my circumstances caused the pain, stress, and frustrations of my hip issue. So many days that I just stayed in bed, feeling completely physically unable and with no desire to even get up. There were days that everything from my head down to my toes just hurt -pain so intense I would cry- and I couldn’t mentally get myself out of the dark place I was in. At that time, life seemed like an insurmountable struggle that I couldn’t handle. Then, I remembered something I said in a blog from last year that gave me the push I needed: “Maybe true strength is the ability to shamelessly admit the times when you’re at your weakest.” So, I finally did just that.

It’s been almost a month now that I’ve been on an antidepressant and I do believe it’s helping. I know that I am a much stronger person as opposed to the hopeless person I was over the summer, but even the strongest rock can crack if it’s gets beaten down so much. My hip issue was such an ordeal that spanned over 6 months and involved the following (in random order): 9 different doctors, 3 MRIs, bone scan, 2 CT scans, 3 X-rays, 2 bone biopsies, a 4-day hospital stay, 2 cortisone injections, 1 ER visit, multiple different medications, and far too many days spent in bed because of the pain. It’s a wonder I didn’t end up in the psyche ward.

With all that being said, getting away from the depressing beginning of this blog, I do have some GREAT news to share. This past week, for the first time since March 10, my hip doesn’t hurt. So what was the mystery pain that perplexed so many doctors? Well, based off strictly the tests and scans, the orthopedist I saw at Bienville Orthopedic said bursitis (which I’ve heard before and makes the most sense); however, the cortisone shots I had in May from the hip specialist in Hattiesburg gave me no relief. Regardless, this doctor wanted to do another cortisone injection, this time out of my chair, in hopes that the previous shot did not go into the right place. And incredibly, it seemed to help relieve the pain in my outer hip/thigh; unfortunately, there was still pain in my hip bone itself and I could tell something was still not right. Well, it’s just my luck that my brother-in-law is a chiropractor (and a great one at that) and after a examination told me that it was something with my hip rotator. So, mom and I have come up with our own diagnosis that it probably was bursitis in the beginning and that all the extreme spasticity from that created an issue with the hip rotator. That makes sense, right?

In other good news, I’ve started going back to therapy locally (Physical Therapy Professionals) and I could not be more excited. For starters, my therapist believes that after a few weeks of some deep tissue work around my hip and thigh should help relieve the pain and tension in the rotator. For the first three or four weeks we’ll focus on good stretching and range of motion before we start to really work. Although I was only able to briefly work with him for a month or two back before my biopsies, I can already tell you that I love my therapist. In addition to already being knowledge about spinal cord injury, he is also willing to listen and learn more. For instance, he has my exercise book from Project Walk to learn about their method and recommended exercises. When I met with him last Tuesday for another consult -since so much happened in the short time I was gone- I stressed to him repeatedly that I need someone who will push me past my limits. That after Zonta, therapy is going to be one of my top priorities; whereas painting has been my pretty much my only focus for the last two months (more on that later).

Considering everything that has occurred the last 6 months, I definitely have not been working out, getting on my bike, or in my standing frame like I should be. I won’t lie, I feel so shameful saying that, but it’s the truth. I know some of it is for good reason, given the circumstances I was facing, but I need to do better (which is why I made my PT promise to work me out hard). Instead of making any sort of progress this year, I feel like I’ve declined in function (with the exception of my paintings). It especially hurts to think I could have already had and be completely recovered from my bladder/bowel surgery that was supposed to be June 16. It’s been difficult not to get upset by the way things have happened this year. I’m tired of feeling held back by my circumstances, feeling restricted by my inabilities to do so many things by myself, feeling stuck in life just as much as I am stuck in this chair. It’s hard to feel like a free spirit when you feel so confined physically. But I know that so many of these things are out of my control and all I can do is control how I decide to react to it. For far too many months I have reacted poorly and it’s time for that to change.

In addition to resolving the hip issue, finally getting back to moving forward with therapy and my surgeries has already been a huge boost in my attitude. In regards to where I’m at with the surgeries, I am waiting to hear back from my Urologist in New Orleans. The other doctor who was assisting with the bowel procedure left during the summer, but has just recently been replaced. After an appointment to meet the new doctor and to discuss all the details again, then we’ll reschedule the surgery once more – hey, third time’s a charm, right? The way it’s going, I’m hoping it’ll be early November, but there’s no telling. All I know is I’m ready to get it over with it; then it’ll be one down and one to go (tendon transfer in my left arm). They will both happen eventually, all in God’s timing.

And of course, I cannot blog without bringing up Zonta and the Goula Cruise festivals happening in Pascagoula next weekend. I’m not exaggerating when I say that for the last 3 or 4 weeks I have been painting about 30-40 hours a week, hunched over my desk for 7-9 hours a day, 5 days a week, like millions of other working people… Except I haven’t gotten my paycheck yet. On a more serious note, I must say that I have a whole new respect and appreciation for artists of all kinds.

Let me tell you what I’ve learned about painting – it is not all fun and games. Painting is a LOT of hard work; it is full of frustrations, requires plenty of patience and perseverance, and is both physically and mentally exhausting and draining. Ironically, I realized it’s such a great metaphor for recovery. There are times that nothing looks like you want it to and it is so easy to give up and just throw the painting away; however, if you push through your challenges and refuse to give up, your finished product is extremely rewarding and fills you with pride.

To be honest, when I started all this in 2012, I was convinced people only bought my art out of sympathy or to just help my cause (I told you I’m my own worst critic) but now, after two years with plenty of practice painting, I can say I’m extremely proud of my work. And what an incredible feeling it is to be proud of your product and have people want to buy it, especially when you have exerted so much energy, time, work, and love to it. I totally have a whole new respect and appreciate for artists of any kind -musicians, dancers, writers, etc- who dedicate so much of their time, body, heart, and mind to their craft. It’s definitely not easy like people may be inclined to believe.

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Ok, everything you’ve read thus far was written this past Sunday and I left it unfinished until now, Wednesday. Why am I telling you this? On Sunday I felt great, very social, relaxed, and comfortable. Today, however, I’m exhausted because I’ve been up since 3:30am, sore from physical therapy, stressed about painting and anxious about the two festivals this weekend, which will finally wrap this long, overdue, scattered and rambling blog.

As I previously mentioned, there are two events this weekend where I’ll be set up. The first is Saturday, October 4, and it’s the 36th annual Zonta Arts and Crafts festival. If you live within an hour-ish from Pascagoula and you’ve never come for the first Saturday of October in the last 36 years to the Zonta festival, you are seriously missing out. Even as a child I always looked forward to Zonta. When I participated in 2012, there were over 300 vendors!! You have every sort of art and craft your heart desires; in addition, the downtown shops and restaurants will all be open, so plenty of great food, live music, classic cars, and kids activities to enjoy. The festival is from 9am-5pm. I will be on Delmas Ave near Canty Street, right across from the Palace. We’ll have two 10 foot tents, a white and a blue, so hopefully we’ll be easy to spot. Then again, the tank of a wheelchair usually sticks out too. I’ll include a link for more information on Zonta (and the other events!) at the end of this post.

The next day, Sunday, October 5, there are actually two events in Pascagoula. First, there is Bachtoberfest at the Pascagoula Beach Park from 11am-2pm. This 2nd annual event features an all-you-eat special from 20+ cooking teams, a speciality beer garden, kids activities, and requires a ticket purchase. The low ticket price is worth it and will benefit the Gulf Coast Symphony.

Finally, for the very first time, Pascagoula will be involved with the very popular Gulf Coast event: the 18th Annual Cruisin the Coast. Come kick off the start of the weeklong block party on Sunday afternoon, from 2-6, down by the Pascagoula Riverfront. Enjoy the classic cars, art and crafts vendors, food, beer, live music, and plenty of fun and entertainment for the kids. It is located near the newly built parking garage and is open to the public.

And if that wasn’t enough to sell you, the weather is supposed to be absolutely beautiful, with no/low humidity and the highs only between 75-80 degrees… With weather like that, it’s just too pretty to stay inside!

To wrap this up, because bedtime is creeping closer and closer, I look forward to having more time after this weekend is over to be able to blog more. In addition, I hope to not only have my new prints, notecards, and 2015 calendars available to buy online soon, but I also am in the progress of redesigning and changing up this website. At the moment, I’ve removed the payment options from the sale pages, but I will likely have much of it inaccessible while it is under construction.

I really hope many of you on the Gulf Coast will make the trip to Pascagoula this weekend for all the festivities. You won’t be disappointed!
FYI- if you come to my booth, PLEASE introduce yourself, even if we’ve met once before. On top of being bad with names anyway, it will be a very hectic day with lots of different faces. Hope to see y’all there!

The following is an article all about this weekend on GulfLive.
Pascagoula is the place to be!

You can also visit my public event page on Facebook
Katy Blake Art at Zonta and Goula Cruise

or to each separate event Facebook page by searching their names.

Stay happy, my friends.

*Sorry for the lack of editing on my sleepy behalf.

It’s the end of the world as we know it..

And I feel okay, I guess.

I cannot tell you how many half-written blogs I have since my last update six weeks ago. Some I will save and work on later because they’re on different specific topics that I still want to discuss; the others, however, will be deleted as I breathe a sigh of relief that I didn’t publish them. They are attempted updates of what’s been going on and how I’ve been feeling – most of which were written in moments of despair and weakness, feelings that I have felt more of these last few weeks. What can I say, it’s been a tough summer.

A brief recap of the last six weeks: the hip issue has still not been formally diagnosed or treated. In mid-July, after doing some research, I asked my GP for a referral to see an orthopedic specialist at a local orthopedic group. According to their website, he is evidently the director of their “spine center” and spinal cord injuries are listed under their category of “frequently treated problems.” First, I get a call from the office by a confused receptionist who didn’t understand why I was being referred. After about 4 or 5 days, I get a call back that the confusion has been cleared up, but the doctor was out of town and I would have to wait for him to come back and review my records before he decides if he’ll take my case. About two weeks later, I finally get a call back and was told that the doctor was “unavailable to see me.”

I have no idea what that means. Although I wasn’t totally caught off guard because I had a bad feeling about it anyway, in that moment I was stunned speechless. I stammered out an awkward ok and quickly said goodbye before hanging up, completely bewildered. Then came the anger of having wasted almost a complete month of waiting for nothing, followed by feeling hopeless because I just don’t know what my other options are. I don’t feel like I’m getting much help from my local healthcare providers and I don’t know how I am suppose to figure this out myself. There’s a reason I didn’t go to medical school.

Actually, in the last two weeks there have been times I thought the hip was feeling better and the spasms have seemed to decreased; however, the last three days it has been back to a gut-wrenching pain that consumes my body and mind. It is incredibly difficult to describe the sensation of pain I feel with my SCI. As an incomplete injury, my sensation is completely altered and random. For instance, from my chest down I cannot feel any temperature (yes, I have burned myself many times), nor can I tell the different between sharp or soft. Strange enough, I can feel a cotton ball better than a safety pin (this is part of what is called the ASIA test to determine your level of SCI). But there are also small spots where I don’t feel absolutely anything -like my lower back or left foot- and other areas I can feel almost normally -like my bladder. There’s no rhyme or reason to it.

For that reason, it’s hard to explain the type of pain doctors usually want you to use to describe the pain- dull, sharp, stabbing, burning, achey, throbbing.

I'll take the entire right column for $1000, Alex.

I’ll take the entire right column for $1000, Alex.

Can I go with all of the above please? In fact, I would almost think it was just super intense nerve pain but I wouldn’t think that would come across on anything on the MRI. The MRI validates what I knew in my heart, that something wasn’t right.

After receiving that phone call and taking a few days to process everything and think about what I wanted, I made the decision to try and move forward with the bladder/bowel surgery that I was supposed to have on June 16th. Honestly, I don’t know what else I can do. I feel like I exhausted all my options and didn’t have any other ideas; besides, I am mentally exhausted from what a struggle this summer has been. Because of the hip issues, it has kept me from really making any goals or being able to do as much, both physically and mentally. The pain is truly exhausting. So instead of painting or doing other things I should be doing to work towards my recovery, I was staying in bed more and simply unable to get myself motivated. Of course, it didn’t help that I also had a UTI during all this. When it rains, it pours – am I right?

It is already difficult not having a job -although I consider painting my job right now- but we all need something that consistently gives us a sense of purpose. A reason to get up every day. We need goals and accomplishments. Feeling like you don’t have that can cause a great deal of harm to one’s psyche. And as I have been sitting stagnant, holding out on my last hope of getting this referral, finding an answer, treating the pain, and wanting to move past this chapter in my book, it’s been increasing difficult to stay positive. After all, we’re all only human and eventually reach a breaking point; even the strongest people will at some point crack. But I know that if I want to see the rainbow, I must first weather the storm.

With all that being said, I felt like making the decision to go forth with the surgery has at least lifted me up mentally, if nothing else. I can not continue to sit around and wait while nothing is getting accomplished with my hip as I keep hitting dead-ends. If bone infection is highly unlikely, then I don’t think I have as much concern about the surgery/recovery- with the exception of the intense spasms. Not to mention that I cannot help but to cringe when I think of adding on more physical pain (from the bladder/bowel procedure) on top of what this hip causes. However, like I said, I don’t know what other choice I have. I just know I need to do something to get back on track and moving forward instead of broken down and waiting for an answer that I may never get.

I think that is one thing that bothers me the most- not having an answer. After all the blood, sweat, and tears (and time, money, and sanity) this damn hip has caused over the last almost SIX months, I just want a freaking answer. By leaving it be, I feel like it has defeated or outsmarted me. But, like I said, I didn’t go to medical school for a reason. Then again, I don’t have to be a doctor or to have even taken anatomy to see that my left hip bone is protruding way more than usual.

Well, that sums up my life here lately. Plus I’ve been pushing myself to work on my painting in preparation for Zonta Festival, which is just a little over a month away. I also finally got my first 2015 calendar ordered for me to check and double check before I put in my first big order. Additionally, I’ll also have Christmas cards this year! Not to mention other new prints and notecards; but, because I’m currently focused on Zonta and possibly another small event the very next day, everything I have must be saved strictly for the festivals. Otherwise, I may not have anything to take period! In fact, I’ll probably remove all my artwork I have for sale online until after the first weekend in October so I can conserve enough of my material to have at my booth. Ideally, I can roll out with a newly designed website (it’s currently in development thanks to a good friend) and have all my new material, including the 2015 calendars, all available to buy online by mid-October. That seems like a solid, realistic goal. It feels great to have goals again.

In regards to the surgery, I called last Monday and let my doctor’s nurse know that I was ready to reschedule my procedure. I made sure to mention that I wanted to wait until mid-October so that I can be at Zonta (God forbid another “hurricane” threatens to cancel plans that weekend again). So, I am now waiting to hear back to find out what my new surgery date will be… hurry up and wait – story of my life, huh? At least I can pass the time with the distraction of painting. And trust me, I’ve been doing a lot of painting.

As far as the hip goes, I don’t have any clue what to do. Sadly, I’m kind of just getting used to it. And while I’m anxious to move past it and have my surgeries, I cannot help but to wonder if I’ll be doing more harm to myself by simply ignoring the pain. I don’t think anyone can have a good, definitive answer for that, and I’m tired of searching for answers. I just want my life back. I want to get my bowel/bladder surgery, followed by the tendon transfer surgery on my left arm; then, hopefully, go for another round of rehab at Shepherd with my newfound abilities and independence that the surgeries will bring forth. During that time, I pray that my van will finally be properly modified and that the arm surgery will increase my confidence between the wheel. And maybe by the time this is all said and done, I’ll get ready and in the position to go back to school full-time, preferably on campus. But I have a lot of land to cross before I get to that bridge.

On that note, let me wrap this up before I ramble any longer. I just felt the need to fill some folks in and to continue documenting my experience and emotions and I hit the highs and lows of this recovery and life in general. The struggle is part of the story and I don’t think I’m even halfway through the book yet. All I know is how relieved I’ll be once I finish this chapter and I can look back and say, “thank God I made it through alive.” Here’s to never losing hope for the brighter days ahead.

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It’s not always easy like Sunday morning..

Usually, before I begin to type an update, I re-read my last blog so I can pick up where I left off. This time, however, I did not even get past the title “Katy Smash” before I remembered, with a great big shudder, that I was still on the steroids (aka the devil drug) the last time I posted. I don’t want to be reminded of what that was like. Besides, it was only -what- 2 or 3 weeks ago? Funny how it can simultaneously feel like it was a lifetime ago, yet also seem like it was just yesterday. 20140715-194251-70971738.jpg

So, what’s been happening since then? A whole lot and then again, nothing really at all. That probably doesn’t make any sense. This blog is starting to seem like one big oxymoron.

Unfortunately, now over 4 months later, I’m still here complaining about this relentless, still undiagnosed and untreated hip pain. Yes, it’s still there. Ridiculous, I know. Everyone is probably sick of hearing it, just as I am sick of talking about it. I’m even more sick of continuing to live with it. I feel like the whole issue has pretty much consumed my entire life as some of the secondary symptoms have really affected pretty much every aspect in my life. Now that my sleep is being affected, I can feel myself getting more anxious and agitated to get this resolved.

I was already exhausted and embarrassed by just the intense spasticity. It’s not so fun to go out when I can’t drive my chair more than two feet before I’d have to stop because of a spasm. Or when I have to constantly ask someone to fix my foot, only to have it kick out again soon as it gets settled. I’m sure it’s no picnic for them, either. The increase of spasticity pulls me to the left and has considerably worsened my already present scoliosis, pretty much reversing all the hard work I did and progress I made of strengthening my core at Project Walk. But what makes it worse is how badly it’s affecting my physical function and ability to do what used to be simple tasks far more difficult.

Even without the pain and spasms, my overall physical health just does not feel well. My blood pressure is all over the place. I feel so lethargic and apathetic I don’t even want to get out of bed, which is not like me. I’m exhausted but I can’t sleep. Over the weekend, I had some head and chest congestion that I thought what was made it difficult to sleep. To you mouth breathers out there, I don’t know how you do it. I’m pretty sure that trying to breathe through my mouth, as I was seriously desperate for sleep, is what made my throat sore. By the way, here’s a great tip for a stuffy nose: put some Vicks Vapor Rub in one of the little Scentsy/wax warmer candle thingy (I’m pretty sure that’s not the official name of it). Just make sure to warn any other occupants of the house that can breathe through their nostrils; it’s apparently a wee bit potent.

Anyway, where was I? Oh, Sunday. Ugh, Sunday – Lord have mercy, Sunday was a LOOONG day. The best way to describe what I felt would be like the body aches/muscle pain that is common with the flu, but I know I don’t have the flu. I don’t think I’ve ever experienced a feeling like I did Sunday. Even immediately after my injury and going through this recovery, the pain and different sensations I’ve experienced in the last 4 years can’t compare to this last week/month, but especially Sunday. I did not move for almost 4 hours that morning, literally. With the exception of using my remote to change the movie, I was completely still in bed, whereas I’m usually glued to my iPad or phone. I don’t even think I posted on Facebook until like 10 that night. That’s when you know something’s up.

You’re probably wondering why I didn’t go to the ER. Trust me, I considered it. I’ve had several episodes lately that have made me want to go to the hospital, which is definitely not like me; however, after my previous experience, I don’t know what my local hospital can do. Speaking of, I have my follow up MRI -finally- this Friday, June 18 (which is much better than waiting until the 29th, as they originally scheduled). The latest “plan of action” I’ve gotten from all my doctors are pretty much pending on the results of the MRI to see if there’s any changes or if it’s gotten better/worse. If it’s gotten better, you might as well sign me up for the psych ward because I’m obviously crazy. I know for a fact I’m not imagining the pain/symptoms in my head (although some people have made me feel that way), but the crazy spasms and the still swollen thigh are also enough evidence for me to know something is wrong. But, everything apparently hinges on this follow-up MRI early Friday morning.

Lord knows I’ve lasted this long, so I know I can manage to hold on (or at least try) for a couple more days to have my MRI and see what’s gonna happen next; however, by the same token, you know me and I can’t just continue to sit back and watch helplessly anymore. After 4 months, it’s become painfully obvious that if I want to get this hip issue treated -which is waaaay past that point- then I need to take matters into my own hands. It’s difficult not to feel like there is no sense of real urgency or concern (for lack of a better word) by my local healthcare providers as I continue to suffer. It’s one thing to just hurt or feel unwell for a period of time. It’s a WHOOOLE other thing when it completely disrupts and changes your life and eventually begins to change you. It’s time to get help.

I’ve contacted the Paralysis Resource Center at the Christopher and Dana Reeve Foundation and am anxiously awaiting their response, hoping they can help me figure out what to do or point me in the right direction. What I’m looking for is an inpatient facility that is obviously knowledgable about spinal cord injuries and accepts post-acute patients. Unfortunately, because of my location, there are no such places nearby and to be blunt, it sucks that your location can dictate the care you get. Then you throw in the insurance obstacle (Medicare and MS Medicaid, in case you happen to be the case manager at an SCI facility reading this) and it’s a whole other ball game. But God knows if I can find any accredited facility within the US that would admit me inpatient to help me diagnose and treat this issue before it gets any worse, no matter where it is, you better believe I’ll find a way there – come hell or high water.

I’ve been doing my own research and have found some possible good options, such as Rehab Institute of Chicago or Baylor in Dallas, but honestly, I’m lacking the energy to advocate for myself so much. It’s been difficult finding inpatient programs for spinal cord injuries that are years post-injury. Not to mention, I am really unsure of what I’m doing. This is uncharted territory for me and so far everyone I’ve asked for advice says they, “don’t know what to tell me.” So if you’re reading this and you do know what to tell me, please feel free to leave your feedback in the comments. Otherwise, I’m praying the Resource Center at the Reeve Foundation will have some helpful input.

That being said, never underestimate the lengths a desperate person will go when it comes to their health and well-being. And I can sincerely say I hope none of you reading this will ever experience what it is like to have something wrong, to hurt and suffer and be left undiagnosed for weeks or months -God bless anyone who’s had to go years- and feel like you can get no help. Have you ever entertained the thought what if you had an issue/condition suddenly happen and you can’t go to your local hospital? What are you supposed to do? If you can’t trust a doctor, who can you trust? It was never a thought that crossed my mind, but it’s scary to think about. Even scarier to play out in real life. I understand spinal cord injuries are uncommon where I live and have learned the hard way how “specialized” and narrow the scope of SCI knowledge generally is in the wide range of different doctors/healthcare professionals I’ve seen. But if I come to you (as a patient) with an obvious problem and you (as a doctor) don’t know what to do, help find me a doctor that does. Is that unrealistic?

I better wrap this rant up, my eyeballs are starting to hurt. I hope I am not coming off as complaining, whining, ungrateful, or looking for sympathy; however, anyone who reads this blog or knows me personally should already know that I’m an open book and that I tell it like it is- the good, the bad, and the ugly. It’s my blog and I’ll _____ (fill in current emotion) if I want to, right? This is the life of a 27 year old girl still learning how to cope and live with a spinal cord injury and all the craziness it entails, on top of the craziness of life itself. If I can’t be honest here, then where can I? And I think it’s ok to admit things just plain ole suck sometimes; we all know life ain’t rainbows and sunshine 24/7. But, Annie promised that the sun will come out tomorrow and I’ll never let go of the faith that this is all happening for a reason and that this too shall pass. And when it happens, I’ll blog about that, too. Being upfront about the battles and obstacles that come with SCI doesn’t mean I’m giving up, but we all need to vent sometime; therefore, I’ll leave you with the words of Marilyn Monroe, “if you can’t handle me at my worst, then you sure as hell don’t deserve me at my best.”

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Katy Smash.

*Editor’s note- it did actually turn into a pretty fancy schmancy blog*

No fancy blog with witty wording or amusing alliterations, just a quick update for those who follow my blog but may not be on social media or unaware of the last crazy week I’ve had. Never a dull moment in my life, dont’cha know?

My last post was on Thursday, June 19, when I was at a standstill of not knowing what the plans were in regards to my progressively poor health and painful hip issues that has postponed my surgery. I found out the next day that I was going to be repeating the same bone biopsy procedure that I just had on the 13th again that following Monday, the 23rd.

Biopsy: Take 2

Biopsy: Take 2

It was a much, much more of a crazier week than I ever anticipated, especially after I ended up being admitted to the hospital after my procedure and did not get released until late Thursday. Unfortunately, because of some complications, I still don’t have a clear diagnosis, as the test results and different doctors went back and forth between whether it is infection or inflammation. I spent a couple days on IV antibiotics, which definitely perked me up some; however, after lab work showed no signs of infection, the antibiotics were switched out with steroids to help with the inflammation.

Finally, around 4:00 Thursday, I was released and sent home with a week’s worth of steroids; which, if you’re on my personal Facebook page or Instagram, are probably more than aware that the steroids are driving me bonkers. Seriously, of all the struggles I’ve faced and different medications I’ve been prescribed in the last 4 years, none have been as dramatic and difficult as what I’ve experienced here recently. God bless anyone who has to take and can tolerate more than the minimal dose of steroids that I’m currently taking. And, for the record, can I also say that I’ve never felt so HANGRY (hungry and angry) as I have the last couple days after I’ve taken my dose 4 times a day. It’s like as soon as it starts to wear off, it’s time to take my next dose. I have no doubt that ‘roid rage is a real thing, and I’m not even on the heavy stuff. But I have noticed that I have been feeling more and more like The Hulk and often thinking, “Katy smash.” At least I have yet to turn green – knock on wood.

So, what’s next?

Great question.

After I finish the 7 days of steroids, I’ll be doing another MRI to see if it has helped with the inflammation that was evident on my previous MRI and bone scan and I can only assume go from there. I really don’t know what to think anymore about what it is that is wrong and has been since March, all I know is that I’m in terrible pain with obvious signals from my body that is telling me something is wrong; from the increased spasticity, the headaches, the lethargy, and the general achiness, I have learned how my body reacts differently now after 4 years of living with spinal cord injury (anyone with SCI understands what I mean). Additionally, I have noticed how much worse my scoliosis has progressed as the intense spasms pull me to the left. In combination with not being as well supported in my core when I’m in the bed, it has made a noticeable difference on something I had worked so hard to stop from happening.

That being said, I know just from the pain that I technically shouldn’t be able to feel, that there is something wrong.You don’t know frustration until you try explaining what pain with paralysis feels like to a doctor; however, I think the fact that this pain has driven me to hysterics numerous times, plus to the ER by ambulance late one Saturday night, is enough evidence that it’s not just some delusional thought or phantom pain. My family might think I’m overdramatic, but I would never take it that far. I avoid the hospital like the plague. Heck, I’m the one who tried to convince my friends to put me back on the canoe after I broke my neck saying I’d just walk it off later, thinking maybe it was just a pinched nerve (talk about being optimistic). Plus, I felt bad for ruining the canoe trip and thought my mom would kill me if I had a helicopter come out there since I didn’t have insurance at the time. What can I say?

I might over exaggerate a story every now and then (I’m just very animated), but I can solemnly swear that this pain is real. My apologies if I sound defensive, but between the medication and the 4 days spent in the hospital where spinal cord injuries are uncommon, I often feel like I’m having to convince people that something really is wrong. Speaking of which, my deepest sympathy goes out there to anyone who has suffered with an undiagnosed problem and left without answers or -more importantly- relief. No one is more sick of hearing me talk about this than I am. It’s been an unexpected and timely delay on the things I wanted to accomplish this year and is holding me back from living my life to the fullest, not to mention has me miserable from the pain and other symptoms. I want to get treatment and move on with my life – it’s beyond time.

I’m worried I’m forgetting what normal felt like and I constantly remind myself to look forward to the day I can read back on this blog with a smile and know I really can overcome anything. Because if I can make it through this, especially the week of this devil drug, then I definitely feel like I could overcome any obstacle. At this moment, unfortunately, I simply cannot look past any day until I finish the one I’m in. Sometimes that’s just how life is, I suppose. C’est la vie.

Let me roll off my soapbox now before this “quick update” becomes yet another chapter in my book. On that note, if I ever do write a book, the last 3 months -and especially my hospital stay- would probably have to be Part 2. I’ve got some stories that would blow your mind and would almost be comical if it weren’t so serious. No matter how bad things get, I’m clinging to the faith that there will be an answer and a reason for all my troubles and strife. I might lose a battle here and there, but I’ll dominate this war.

Here’s hoping for a better tomorrow

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Livin’ La Vida Loca

In case you don’t know what the Ricky Martin smash hit means, because you know I had to look it up myself, it’s living “the crazy life.” That being said, I’d rather not la Vida Loca as much sometimes, especially here lately.

Every time I go out to the hospital here recently, considering I’ve gone for 5 different tests and multiple times for lab work in the last 4-6 weeks, I always feel like I should channel my inner Jack Nicholson from The Shining:

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“Heeeeeere’s Katy”

Confession, I’ve never paid attention to the whole movie beginning to end, but I’ve seen enough to know most of the references people use. Horror movies aren’t my thing.

Back to the hospital thing, fingers crossed that I won’t have to see them again for a while — no offense to the folks there; heck, they probably want to see less of me as well. All joking aside, everyone at the local hospital and healthplex are all very friendly and accommodating to me (especially those that are on a first name basis with me since I’ve been out there so much in the last four years and even more so in the last four weeks); however, I’d prefer to run into them OUTSIDE of the hospital. Unless you work there, you’re never really going to the hospital for a good reason, right? Either you’re sick/injured or you’re seeing someone who is sick/injured. Whichever way it goes, I’d be perfectly fine if I didn’t have to go back to the hospital for a looooong time. Unfortunately, I’m sure that won’t be the case.

Gnarly, huh?

Gnarly, huh?

As far as the latest on my health and bone biopsy, I can’t even say I know what’s going on, other than the fact that I’m still feeling very sick and no medication or antibiotic has been given to me. I found out Monday that the cipro (antibiotic) I was on for a UTI last week in preparation for the bladder surgery DID, in fact, skew the results of the bone biopsy.

Let me first say how angry I am at myself for that. I vaguely recall my SCI dr telling me to be off cipro for the biopsy. This was last Monday, one of my worse days when I was running fever, feeling terrible, and slightly out of it, was also the day I had to talk to 2 different doctors 4 or 5 different times and I lost count of all the nurses I spoke to and/or left messages with that day (side note, it is not fun trying to get 3 different doctors who are in 3 very different locations -Pascagoula, Hattiesburg, New Orleans- on the same page). That was when I was still trying to figure out what we were gonna do about the surgery, so it was a mentally exhausting day on top of the already physically exhausted state I was in. That being said, I can’t recall all my different conversations with 100% certainty. Then, last Wednesday, I got the call from my local GPs office about the orders for the biopsy per request by my SCI dr in Hattiesburg (as she was going out of town and would be out of the office until this past Monday). To make a long story short, because of the state of mind I was in when I spoke to my SCI dr previously, I questioned several people locally about being on the cipro and was told it was fine to take it. Evidently, as I had to find out the hard way, it wasn’t. But oh well, it is what it is. No one is more upset about it than me and I feel like I can only blame myself.

Moving on.

MRI- The bright white light is my left hip

MRI- The bright white light is my left hip

So, although my MRI shows my left hip lighting up the screen bright as a sunny day and the doctor that performed the biopsy said it’s definitely infected and the bone was soft, the cipro prevented the samples they took to show anything growing (what type of bacteria/infection it is); therefore, they don’t know which antibiotic to treat it with.

No, I’m not a doctor, I just play one online.

I can be pretty positive that the treatment will be 4-6 weeks of IV antibiotic (likely a broad spectrum since they cannot identify the bacteria), which means bringing back the dreaded PICC line. Ironically, the PICC line could have caused this infection (or a UTI or pressure sore) and because I dealt with all three of those things at the same time in the beginning of March -the perfect trifecta- I doubt I’ll ever know how this happened. Right now, I don’t care about how it happened, I care about how to treat it. I found this out on Monday. My GP was going to send the results and consult with my SCI dr as well as an infectious disease doctor. As I write this, it is noon on Thursday. I have yet to get any treatment.

Unfortunately, this week has consisted of nothing but me staying in bed. On top of still trying to heal the lingering red spot (that evidently got rubbed too hard on Monday and apparently now looks worse- don’t get me started) I just feel too exhausted to even get up in my chair. Tired, tired, tired. That’s all I feel. Sick and tired. Tired of leaving messages and not getting any calls returned. Tired of waiting, and waiting, and waiting. Tired of being sick and lacking the energy to do the most basic things I need to do. Tired of hurting, the intensity of the spasms making my whole body feel sore. Tired of this bed, of not feeling like myself. I miss painting. I miss going out. I miss physical therapy. I even miss school. I miss feeling good enough to go out and do all those things I miss so much. I miss my life.

This infection or whatever it is that is in my hip is taking all that away from me and is starting to drive me crazy. I am desperate for relief. I am desperate to feel good again. If I don’t hear back from a doctor by the end of the day, I’m gonna lose my mind. On the bright side, I probably won’t miss that as much.

One day, I’ll look back on this blog and know I was strong enough to overcome this seemingly overbearing obstacle. I just pray that day comes sooner than later.

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