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!
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.
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.
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.
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.
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.
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.”
*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.
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?
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
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:
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.
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.
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.
In case you’re not on my Facebook, here was my post about my 4th crippleversary:
My 4th anniversary of my accident: talk about an interesting roller coaster of a day. I woke up after a restless night, not allowed to have coffee, only to find out not even 5 minutes after getting up in my chair that my biopsy was going to be postponed- *cue first cry of the day. An hour and cup of coffee later, I get a call that there was miscommunication and come as soon as possible to have the biopsy done (here comes frustrated cry #2). After driving in the pouring rain and rushing into a chaotic hospital waiting room, I barely even had time to process everything that had transpired. While prepping for surgery and sitting with my mom, prior to going back, the anxiety kicked in (fearful cry #3); and even after the deed was done, I guess the combination of the anesthesia and the morphine, on top of my already fragile physical and emotional state, had my eyes fill with tears for the 4th time- all before 2pm. Talk about emotionally draining.
After getting home, I was definitely groggy, nauseous, and not feeling well at all; however, I somehow convinced myself that maybe if I went out (there were 2 different events going on around my town), it would make me feel better. So despite having episodes of dry heaving from the nausea and horrific spasms that wouldn’t even let me drive a few feet before kicking in, we ventured out to Paddlepalooza, where we got to listen to some great music, watch a beautiful sunset, and see some people that I have not seen in awhile. And I was right, it was a great distraction and nice change of scenery for me, mentally.
As we drove home along the beach to see the beautiful strawberry moon, although it was a long, rough day and I was starting to feel worse and worse, all I could think was just how thankful to be where I am today, even with the current medical issues that I’m facing- to think where I was this time 4 years ago is unreal.
No matter how bad it may be, I can never express just how grateful I am to still be alive; to have such a wonderful family, especially my amazing mom, who takes care of me; friends that love me; and such amazing community and online support – I feel so much love from people that I will never even meet. I can never be angry or regrettably upset about my injury because of all incredible opportunities that have come from it and the people whom I have met that I never would have otherwise. In the middle of every adversity lies opportunity and I’m just blessed to have all that I do to keep me going everyday. I definitely could not do this on my own and I’m so lucky that I don’t have to. This injury has taught me so much about myself, allowed me to become closer to my family, find out who my real friends are, and can I mention meet Drew Brees?
No, my life is not easy by any means and there are days I feel like I would give anything to have just one hour of my fully-abled body back, but time really does have a way of healing things. Then, I also remember when the doctors said I wouldn’t move past my biceps and how lucky I was not to have brain damage from how hard I hit my head. A small change of perspective can make a big difference. But again, I could never do this without my family, friends, and faith that there is a reason for my accident and I live my life with more of a purpose now than I did my first 23 years. Thank you all so much for your continued love and support; it lifts me up when I’m too weak to do it myself and I’m forever grateful. Here’s to the next 4 years!
Forgive me, I’m lacking the creativity for a more clever blog title.
Let’s see how well I can complete a “quick update” to talk about what all has transpired in the last week on the night before a bone biopsy -and my 4th crippleversary- despite feeling a little delirious from the fever and the meds. I hear by declare that I’m feeling so sick that it’s affecting my state of mind. Oh and before I forget, my big surgery in New Orleans on Monday has been postponed as a result of my hip pain and the dysreflexia and fever I’m experiencing as a result. More on that further down.
They say misery loves company. If you’re on my Facebook or a friend in real life, you’ll probably agree I’ve been pretty pathetic in my posts lately. I feel like I should apologize; I never want anyone to think I’m ever seeking pity or sympathy. There are two types of people in this world:
1. People who just want to be left alone when they’re sick.
2. People who want to be nurtured and comforted by others.
I’m definitely the latter.
Just to clarify for anyone who needs a reminder- I have been experiencing a severe pain in my hip and a drastic increase in spasticity since early March. It was right after I had that terrible UTI that required not only a PICC line of IV antibiotics, but it was also followed by a week of oral antibiotics as well. Talk about a bad one. I still remember just how miserable I felt at Mardi Gras. It was also during those 2-3 weeks that I developed a red spot on my bottom that was bad enough that I spent the next 9 days in bed, lying on my left side, and trying to heal the wound as soon as possible. It was slowly after I started getting back up in my chair that I noticed a new feeling of discomfort in my left hip and an increase in spasticity. It wasn’t long after that when I had an episode late on a Saturday with such severe hip/back pain and intense spasms that I asked my mom to call an ambulance. Anyone who knows me knows that I avoid the hospital like the plague. Besides, there’s no way I could fake the spasticity that has twisted my body like a pretzel even worse than it was. My best friend, Laura, got to see first hand today just how bad they have gotten and she was flabbergasted. My legs ache like I have just run a marathon.
So over the last 3 months, the pain, swelling and spasticity continued to get worse and no one knew what to tell me; some doctors just said it was just the spinal cord injury or just a bad UTI, but I knew there was something more. After 4 years of living this new life, I have learned how to listen to my body and know when something is wrong. That being said, I cannot ever explain the exhaustion and frustration of trying to convince doctors that there was something very wrong and it’s not just in my head. Some didn’t know what to do, others just wanted to treat the symptoms; then I found my awesome new spinal cord doc — Susi Folse at Southern Bone and Joint in Hattiesburg, who I would highly recommend to any of my local SCI friends.
2 MRI’s, a bone scan and CT scan later, here I am preparing for a bone biopsy. Based off some of the films I’ve seen and discussed with different people in the medical profession, there is definitely an issue in the left hip clearly evident in my previous tests. The big question is what exactly? We’ve gone from the SI joint, trochanter bursitis, possible fracture, to now thinking possibly osteomyelitis.
Osteomyelitis is a fancy word for a bone infection that can come from a bacteria that gets the blood stream and somehow can infected a weakened spot in the bones. The bacteria could come from a UTI, a PICC line, a pressure sore… All 3 things I experienced at the same time. According to WebMD, only 2 out of 10,000 get it. May the odds be ever in your favor, huh? I keep saying that going for a biopsy on Friday the 13th, which is also the 4th anniversary of my accident, possibly having something only 2 out of 10,000 get- I need to buy a lotto ticket! I think if I were to ever win it big, tomorrow would be the day, right?
I’m very nervous about the procedure, but at this point, I’d be willing to do any sort of test if it could lead to a definite diagnosis. In addition to the horrible pain and spasticity, my condition has worsened over the last couple of weeks with more symptoms of dysreflexia, such as raised blood pressure, fever, and headaches. A few weeks ago, I was sleeping 12+ hours at a time and feeling extremely exhausted ALL THE TIME to being so restless with the pain being so intense and my legs too jumpy to get any decent sleep. The bags under my eyes, combined with the weight I’ve unwillingly lost (I credit to the spasticity), and just the look of tiredness and sickness in my eyes, there’s no denying that I have not felt like myself in a long, long time.
Everything hurts. My head, my neck and shoulders, and my arms all ache as if though I’ve been working out hardcore. Heck, I could barely lift my arms enough to hold the shower head against my head this morning to drown my sorrow in the warm water falling down my face -trust me, this girl don’t play around her my showers. That was one of the small things I realized I took for granted after almost a half of year after my injury of mainly having bed baths. Therefore, I absolutely love getting a shower now days.
But it’s not only the body parts that I can feel and use the most that hurt; as I mentioned earlier, my legs and abs ache from the spasticity and the hip pain has spread to where I feel like my whole left leg -especially from my hip to knee- feel like it’s on fire. The swelling is crazy ridiculous too. I don’t even recall feeling this miserable immediately after my injury (although I’m sure I did); I have really forgotten what it feels like to feel good again. Now, I’m feeling like either the infection/fever or the exhaustion from the pain and spasticity is making me go crazy in my mind. I just can’t take it anymore. Somebody MUST take me out of my misery soon if they don’t figure out a way to treat it because I’m just exhausted. This last week, I have really lacked the energy or even the desire to leave my bed, which is a big red flag.
In case you didn’t get all that and need me to summarize: I am sick and tired of always feeling sick and tired. It’s hard to stay upbeat when you feel so physically, mentally, and emotionally drained from everything in your life. On top of my own setbacks and struggles, I’ve definitely had my share of unnecessary drama lately that is the last thing I need to add to my already maxed-out stress levels; personal relationships, van modification saga, preparing for a surgery that has now been postponed – I simply cannot take anymore.
Although I was disappointed about my eventual yet elective bowel/bladder surgery being pushed back yet again, I knew that I could not put my body under any more stress if I’m already experiencing so many physical problems and signs of dysreflexia already.
The recovery is going to be a doozy anyway and could increase my symptoms of dysreflexia, so I couldn’t even fathom putting my body through that right now with how awful I feel already. The unexpected hip issue, which is becoming much more serious than I ever anticipated, is definitely something that needs to be managed before I proceed forward with the surgery. I never imagined having a bone biopsy done at 27; to say I’m scared is a bit of an understatement.
I can’t help but to laugh that this is falling on my crippleversary and Friday the 13th. I really should hit up the casinos tomorrow, but I’m a little scared of how I’m going to feel tomorrow after my biopsy. I’m already feeling rough, I imagine this tests is definitely gonna wear me out, especially sense I imagine (and hope) that they’ll give me a sedative. I’ve heard this is not exactly a painless procedure and I have sensation in that hip. I have enough sensation that I can feel the pain; however, I’m still experiencing some dysreflexia from it, too. Talk about the best of both worlds, huh?
Ok, enough with the complaining. Hopefully you read this and understand that I’m not having a pity party, but rather venting my frustration and exhaustion as I’ve been fighting this losing battle with my still undiagnosed hip pain. Being sick really can make you feel crazy after enduring it for so long, plus feeling physical and emotional drained on top of it all. I’ve lost count of the number of times that I’ve cried just from the stress and anxiety in addition to just crying because of how awful I feel, which is so very unlike me. And what’s been very unfortunate is no amount of medication so far as been able to help alleviate the pain or spasticity so far. Please God, bring me some relief soon before I go even more crazy in this state of mind I’ve been in lately.
Well, now it’s later than I planned on staying up and I’m too exhausted to edit. It’s past my bedtime and it’ll be an early morning with no coffee allowed. Hopefully this post isn’t filled with atrocious grammatical errors-; just felt the need to update to all those who continue to care about my recovery and support me in my time of need. God bless you all
If you got that musical reference, then we can be friends.
Life lesson number…. Heck, I’ve lost count. Math is not my strongest subject.
Women (and maybe some men): Never underestimate the power of totally changing your look when you’ve been feeling down and in the dumps- in my case, cutting off and coloring my hair. I told y’all a few blogs ago that Sheryl Crow was right: a change will definitely do you good. The word ‘definitely’ doesn’t work when you try and sing it out loud, because you know I totally just did, but it really needed to be added in there for the extra emphasis.
I didn’t set out with those intentions, necessarily, but like a true Southern Belle, I was originally just making sure my roots weren’t showing and my eyebrows were waxed before being admitted for surgery next week (8 days, really!?)… Hey, just because I’ll be laid up in bed with tubes coming in and out of me the next few weeks doesn’t mean I can’t look good while I’m doing it, right? At least this time around I have proper preparation before going into the hospital- that doesn’t usually happen. Major bonus.
Anyway, so I got a box hair color just to hold me over until I let my hairdresser color it after I’m back on my feet (figuratively speaking) and through the toughest part of my recovery; therefore, I just asked him to come for a cut, which I figured would be a trim. However, after being so hot lately with both summertime in the south in addition to having fever/running hot like SCIs have a tendency to do, combined with being in bed so much, I’ve been complaining about my hair constantly. It has just recently gotten long enough to put in a ponytail. A ponytail that never fails to fall out within the next hour and get my hair into a tangled rat’s nest that seems impossible to detangle myself without pulling out chunks of hair (I always shed a lot of hair even prior to my injury, but I swear some of my medications make it 10x worse). It is double aggravating that I cannot put the hair back into a ponytail myself. Don’t get me started on quad hands and fixing hair- ugh, that could be a whole other blog.
After much urging from my mom, who loves short hair on me anyway, I finally figured ‘why not?’ Anyone who knew me from 2002-2010 should be aware I’m no stranger to changing my look and getting fun and funky styles- it can almost be addictive. Brown, black, red, blonde- I’ve done em all. It’s just hair, it grows back. If I don’t like it, well, I intend to be tucked away recovering for a bit, so no one would really see it anyway. Plus, like I said, I’ve been so hot (right now I have my AC window unit set on 68, fan on high, and ice pack on my back, if that tells you anything) that I want to shed anything that will help keep me cooler. Since I can’t remove my skin, which currently feels like it’s on fire (possibly nerve pain), I figured the hair was a good second option. And man oh man, I’m so glad I did.
I feel like in addition to my cutting hair, I cut away a lot of my troubles, worries, and anxieties with it. I don’t know, it’s just something about changing yourself that is so refreshing and empowering, especially when you embrace the change of your look along with a change of outlook and attitude. Like my hairdresser said, the way we present ourselves is a reflection of who we are and I think forgot who I was for a minute there. Pardon my French, but in case you’re unaware of who I am, I’m a badass bitch who can kick butt and take names. This haircut brought me back to that. Some folks are gonna learn that just because I sit all day doesn’t mean I won’t stand up for myself and not be ashamed or apologetic for being who I am. Loud and proud, right!? I like to think my hair represents that about myself now.
My mom and I both agree that our best quality can also be our worst faults: sometimes, we’re just way too nice. What’s sad about being so nice is the people who take advantage of it. I let myself become a pushover. But you know, “there’s an old saying in Tennessee — I know it’s in Texas,probably in Tennessee — that says, fool me once, shame on — shame on you. Fool me — you can’t get fooled again.” (George W. Bush) Sorry Georgy, I couldn’t resist. But seriously, just like The Who, I won’t get fooled again.
It’s amazing how sometimes life slaps you in the face with such a sudden realization, although it can also really suck to learn these things the hard way. And I’m so stubborn and set in my ways that it’s the only way that I ever learn, unfortunately. Just ask my mother.
I’ve been dealing with a lot of personal struggles with myself over the last several days (weeks/months) in addition to having so many other things on my plate -surgeries, new doctors, hip pain, van mods saga, and just not feeling 100% physically or anything like myself for far too long. And what I’ve learn -the hard way, of course- is that I cannot depends on others to give me the answers I need (or want, perhaps) and that what matters most at the end of the day is how I feel about myself. I must make note to self to reference back to this blog when I’m feeling low.
I am unapologetically who I am, be it good or bad, and put myself out there like an open book, in case you haven’t already noticed (which you’ll really see in my next blog that I’ve already been working on and is already at 2000 words…) Why do I do it? I don’t know. Why do any of us act the ways that we do? Sometimes it’s just who we are and why should we give anyone the power to make us feel belittled or question ourselves? Ain’t nobody got time for dat. There are lots of typical sayings like “with friends like that, who needs enemies” that I could spit out, but I think you get the gist of what I’m trying to say there, right? And not trying to “call out” any friends, it can come from strangers as well.
I don’t think I can write this blog without openly admitting that I grew up being very self-conscious, with low self-esteem, and seemingly always seeking approval/love from others as opposed to finding it from within myself. For those who don’t know, I was a bit of a chunk growing up (5’5 and 215lbs at my heaviest) so I never felt comfortable in my own skin. It sounds pretty sad to say now, but I never loved myself then.
I somehow dropped the weight when I left for college in Hattiesburg in 2006-07. Don’t ask how because I honestly don’t know; I chalk it up to waiting tables 40-60 hours a week (that’s some serious exercise), walking around campus, stress, and being too broke to eat like I did when I lived at home. How I have managed not to gain it all back in the last 4 years living a much more sedentary lifestyle and eating my momma’s AAAAAMAZING home cooking is beyond me -knock on wood. I just take it as good karma. I feel like I’m owed at least that much, right??
However, even after I lost the weight and became what I can only describe as what I consider that society deems as “attractive and socially acceptable,” (based off things portrayed by the media), I was never happy with myself. Real quick on that note, can I just tell you how interesting it has been in my short 27 years to have lived as once very overweight, then seemingly average size and allegedly attractive, to now living with a disability? You wouldn’t believe all the different ways I’ve noticed I have been treated by strangers depending on my appearance at that stage of my life; it might sound crazy, but I pick up on things like that. But that’s a whooooole other blog itself that involves a lot of sociology/psychology and is, like, way deep, dude (trying to channel my inner Dazed and Confused) Besides, writing these blogs can be like a dang Olympic sport (I’ve been working on this one for like 5 hours).
Back to what I was saying: prior to my injury, instead of learning to love myself first, I always had a boyfriend that – I can see looking back now- I think I always focused my time and energy on loving them instead of myself and would base my own self-worth by the love they gave me as opposed to the love I should have felt for myself. That made sense, right? However, being single for the last few years, on top of having to re-learn to re-live my life with a disability, has forced me to look deep within myself for the first time. How startling it was to discover I had no clue who I was. I didn’t think my mid-life crisis was supposed to occur until later in my life, Funny how the last 4 years have been such a battle between feeling so self-conscious again now with the disability, while simultaneously discovering who I am and learning to love that person, both inside and out- the good, the bad, and the ugly- when I didn’t even allow myself that opportunity the first 23 years of my life.
I think with this type of injury, especially at higher levels such as mine where you ARE so dependent on others for such basic needs, it’s impossible not to feel like a child. And after so long of feeling and being treated that way, you start to get lost in it and forget that you are an adult and don’t need permission or approval from others to be yourself. Then again, I say you don’t need permission, but when you’re physically unable to do something for yourself and no one is around or willing to do it, then you realize you kinda do have to depend on someone else. It sucks. I’m still adjusting to that, don’t know if I ever really will. Again, that’s a whole other blog.
Let me summarize and give you what I gotta say in one final nutshell before I continue to ramble on any further and start to feel any more scattered:
Ask yourself these questions:
- Do you know who you are and who you want to be, know what’s in your heart, your values and morals, how you feel about yourself and how you treat others? Do you know you can rely on yourself and that you don’t have to approval from ANYBODY to live your life the way you want?
- Do you know the truth about yourself, your intentions, your ambitions and goals, your passions? Do they make you happy?
- Do you believe that you deserve that you get what you give? Do you give? You know that you decide how you’re going to let people – be it strangers, family, friends, or lovers – treat you? Do you know your self worth? You should never settle for less than what you believe you deserve.
If you answer yes to these questions and you can sleep at night being happy and at peace with yourself, then you may pass Go and collect your $500. But if you answer no to these questions, I strongly suggest that you venture out on your own “Eat, Pray, Love” journey. Although mine would be more aptly titled “Eat, Pray, Eat;” I’ve got way too much to focus on and be selfish about for a bit longer before I even think about love again. Besides, like I said, I’ve learned -again, the hard way, of course- that we accept the love we think we deserve. It just took me about 27 years to realize what I deserve, and it’s more than what I’ve been given lately. Tough life lesson to learn, but it could’ve taken longer, I suppose.
So I didn’t just cut my hair, I cut all that crap out of my life. Talk about a weight lifted off my shoulders, literally. Onwards and upwards to bigger and better things. Am I still a little (a lot) nervous about my surgery, worried about my hip, and unsure of some other situations? Most definitely. But I know I’ll finish strong. Besides, so far my track record at overcoming obstacles is pretty good- I mean, I’m still here, aren’t I? I’m once again realizing some things are simply out of my control while also remembering that I’m way tougher than what I’ve been portraying lately. But I think the new hairstyle gave me that “tough bad ass bitch” attitude that I somehow lost in the last four years. Therefore, like I said, never underestimate the power of a complete transformation. It’s good for the soul.
PS- whoever said said ignorance is bliss was wrong, I’m much happier knowing what I know now.
“I love the person I’ve become, because I fought to become her.”
That’s how all the great stories start, right??
For those of you not on Facebook, here’s the latest update on my upcoming surgery (in less than two weeks) after my pre-op at Ochsners on Monday (6/2) and the most recent update on my hip issue after seeing my SCI doc in Hattiesburg today (6/3). Yes, Mama Blake and I have been burning some rubber and running the roads, plugging in almost 450 miles of driving in 2 different directions in just the last 48 hours for these appointments. Exhaustion is an understatement, hence this copied and pasted (although modified and added to) Facebook status-turned blog update of the latest and greatest in the always exciting life of Katy Blake. Now, after that enticing introduction, try not to get too green with envy
if you as you continue reading:
Well, my surgery pre-op at Ochsners is finished and in an interesting turn of events, I will now be admitted between 12-4pm on Saturday, June 14 (the day after my 4 year “crippleversary”) as opposed to on Sunday to ensure I am properly prepared and cleansed out for the surgeries early Monday morning. I was surprised and slightly skeptical to find out it may be as little as a 2-3 day recovery stay afterwards and not the 5-10 day stay I had heard/anticipated. But, because I always have to make EVERYTHING complicated (just ask my siblings), I’m not holding my breath that it’ll be just 2 or 3 days. You can’t blame me, after almost 4 years of SCI, but I’ve learned to hope for the best but expect the worst.
I still have to see my SCI dr this week to follow up on my hip issue after seeing the hip specialist she referred me to this past Friday (that unfortunately did not get resolved by the cortisone injection); so as long as my SCI dr still approves of me having this surgery, despite my still ongoing hip pain/spasticity/dysreflexia issues, then this time in exactly two weeks, I should hopefully be doped up and in recovery. Probably hurting but hopefully too drugged up to care (that could make for interesting facebooking/blogging). That being said: After June 16, enter this blog at your own risk.
Unfortunately, I have already begun having some anxieties, so I appreciate all your prayers and positive thoughts as I plan and prepare for these procedures (unless my SCI dr advises otherwise because of the sudden and unexpected hip problem). I should know for sure by the end of the week. Other than anxious, nervous, and scared, I’m not sure how else I feel about all of this. Yes, I’ve been through worse and made it out fine; however, to selectively attempt this surgery a second time makes it much harder, even though I know it can’t be avoided or put off much longer. Just the timing with this sudden hip problem has complicated some things, especially for me personally and everything else going on (my cup runneth over and my plate filleth up). But oh well, better go on and get it over with. Gotta suck it up and do it eventually and I know it will be worth it in the long run.
“I can do all things through Christ who strengthens me.”
Today, my SCI dr confirmed my suspicions and disagreed with the hip specialist that I saw Friday- whom after saying it was trochanter bursitis, did just one cortisone injection into my hip that has not brought any relief or reduced the swelling or spasticity- so now my doctor is thinking either hip fracture (most likely) or tumor (doubtful).. Fortunately, despite recently having a fever most of the time and some symptoms of dysreflexia, I did blood work a couple weeks ago that rules out any infection as a cause of this sudden situation, thank God.
Next up is to do an additional “sliced” (not clue, just repeating what I know) CT scan that will hopefully finally show SOMETHING that the bone scan, 2 MRIs, and the 2 X-rays has not. We’re (doctor, mother and I) are all very frustrated by this becoming so difficult to diagnose while I continue to suffer so much. To say the least, I’m physically, mentally, and emotionally exhausted from this roller coaster ride of the last several months. Isn’t it ironic that I’m paralyzed but my spasticity from my chest down has been so intense that my legs (of all things) physically hurt and are sore as if I had just ran a marathon? I feel the pain/aches/tenderness in both legs (especially from my left hip down to my knee, which feels like it is on fire) AND I also am having dysreflexia (something that occurs when someone who is paralyzed has pain below their injury that they can’t/shouldn’t feel). Is this what they consider the best of both worlds?? Not to mention, and many folks who have seen me recently have remarked, but I’m sure I’ve lost 5-10 pounds unintentionally with the last two months due to the intense spasticity. Honestly, between that and the physical/mental exhaustion, I look pretty sickly.
So, my SCI gave me a thumbs up so the bowel/bladder surgery (mitrofanoff and ACE procedure) is still a go for early Monday on June 16 (although admitted on the 14th) and I’m supposed to be “limiting my activities” until then -aka on bed rest- which sounds great right now because I’m so exhausted, but I’m sure I’ll be saying otherwise after a few days stuck in bed.
My physical therapy that I have really been enjoying for multiple reasons has been immediately stopped as a result, which is disappointing; however, I know my body needs a lot of rest before the next 11 days is up and we don’t want to risk any possibility of any further damage to my hip until we know exactly what it is. Looks like I’ll be in the bed for most of the next (less than) 2 weeks and rotating from side to side, not only help relieve my hip, but I’m still trying to heal what almost became a state 2 pressure sore. Fortunately, my doc got to see it today and said it looks great and to keep doing what I’m doing.
That’s about it for now. I’m sure since I will have more downtime in the next several weeks, I’ll be blogging more (or so I say). I’ll at least do my best to update in regards to these recent struggles and upcoming surgery. As always, I appreciate your prayers and support.
“Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.”