15Jul/144

It’s not always easy like Sunday morning..

July 15th, 2014

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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29Jun/141

Katy Smash.

June 29th, 2014

*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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19Jun/1413

Livin’ La Vida Loca

June 19th, 2014

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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14Jun/141

Another year has come and gone…

June 14th, 2014

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!

A summary of my day

A summary of my day

12Jun/147

Bone biopsy and 4th crippleversary

June 12th, 2014

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

8Jun/141

Gonna harden my heart, gonna swallow my tears…

June 8th, 2014

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.

I got my sassy pants on, now!

I got my sassy pants on, now!

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.

20140608-172220-62540864.jpgI 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.”
Kaci Diane

 

3Jun/142

You see what had happened was…

June 3rd, 2014

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:

Monday update:
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.”
-Philippians 4:13

image
Tuesday update:
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.”
-Matthew 6:34

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29May/143

I Know Why the Caged Bird Sings…

May 29th, 2014

Blog title formally known as: Life lessons with a side of inspiration: I had a learning moment today. But in honor of the life and legacy of Maya Angelou, who I will never know but has taught me so much, I bear a piece of my soul and aptly titled it by your first popular piece. I would hope my words I’m about to share would have made even you proud. Rest in peace. 20140529-223741-81461671.jpg

Originally, I was going to post this as a Facebook status on my personal page, but I’m sure all my friends would hate for me it for how long it has turned out to be, so on the blog it is. **Don’t let the long part scare you, it’s not that bad!!!

Besides, it’s not often I’m “proud” of a blog, so do me the honor and read this whole thing. I’d get on my knees and beg and all but ya know… #cripperk

I’m pretty sure anyone who follows my recovery whether it’s on my blog, personal Facebook, Help Katy back to rehab, through word of mouth in the community, work at the local hospital that I’ve visited more than I’d like here recently, or have been within a 10-foot radius of me at any time since around March, should be very aware that lately I’ve been dealing with an unbearable and undetermined pain in my left hip. Because of it, I’ve been having increased and intense spasticity without any source of relief and as a more recent result, have had added symptoms of autonomic dysreflexia (if you don’t know it by now and you’re that curious, just google it) with things such as fever and funky blood pressure. It’s been almost 2 months and I don’t know if it’s wearing me out mostly physically, emotionally, or mentally, but to say in the grand scheme of things that it’s “exhausting,” is an extreme understatement. So, hi, that’s been my current state. Depressing, I know. But Wait – Don’t go away! It’s gets better, I promise.

Life Lesson #874 (give or take): I was at physical therapy today, which consists mostly of stretching and range of motion because of my current hip issue (it has not been a hardcore physical workout like Shepherd Center or Project Walk Spinal Cord Injury Recovery, understandably), I was showing some of the therapist/PTA student a few of my many videos of my time at both facilities and the type of exercises I was doing. Not only did it give them a chance to learn more about these places and SCI itself, but it also gave them a chance to see what my “normal” level of spasticity used to be, of what things I am usually strong enough for, and what I am typically physically capable of doing. It was hard not to get nostalgic watching those videos and to see how much stronger I was and felt as recent as this past November (that was my most recent video from PW). To feel like I’m rolling backwards (pun totally intended) is tough to bear; I want to progress, not digress. I mean don’t we all? Although, I did grow up learning one thing: Two steps forward, one step back. Thanks a lot, Paula Abdul.

Let me be real: I have been broken and put back together so many times over the last almost 4 years with all the different obstacles I’ve had to overcome, some I felt sure would never pass. Fortunately, I’ve proven myself wrong (and occasionally right in some different instances) since then. But today, in that moment, I let myself feel sad and broken as I was watching and was reminded of what I worked so hard for and felt like have suddenly lost because of this unexpected and still undiagnosed pain and the consequences that have followed as a result. For that moment, my heart was broken for myself. Pity party, table for 1.

Then, later in the session, my PT came in and had me sit on the edge of the mat, at some points having me use my arms to support myself and then supporting me as I worked on throwing some punches (top priority for this girl, gotta fight all the men off). As I sat back and stretched, I started moving my arms in every direction, my scapula and shoulders rolling and sounding more like Rice Krispies (should I include the trademarked symbol?) with every snap, crackle, and pop they made. Out of nowhere, my PT makes the comment how lucky I am and how amazing it is that I have the strength and movement that I do for my injury level- an incomplete C5. And just like that, with the snap of the fingers (figuratively speaking because it’s obviously not literally mine), that was it. That’s all it took to change my perspective and realize how blessed I am to have what I do, to have “more than I should” as I’ve been told a time or two before (if you go by the book).

That is when I started recalling my blessings and not my problems; a subtle comment was such a sudden reminder to be grateful for what I still have and not pity what I’ve lost. No matter how bad it is, it has been, or it may seem, someone out there has it much worse. Just look around us, it’s not so hard to see. I’m lucky in so many ways- more than I even realize, I know; and I must constantly remind myself of that, especially in times like these lately.

I don’t know why I feel so compelled to share this, as hard and personal as it is as I tearfully write parts of this; to essentially bear my soul and pour out my feelings (“just bein’ real, yo”)… But then I think, maybe there is someone else out there who needs the encouragement that I’ve been needing or a reminder that a change of perspective can change your life. That it’s okay to hurt and cry, get upset and get it out, but don’t let it consume you — and definitely don’t let it define you.

Within every adversity lies some sort of lesson or opportunity that YOU choose whether or not you’ll take it or if you’ll let it take you. Because it WILL take you, but only if you let it. You can always go by the book, or you can write your own story- it’s your choice. We don’t always get to decide our struggles, but we do get to decide how to handle our struggles. Why get mad? Get glad! (Another trademark symbol here). Ok, enough of that.

I could list a lot more of inspirational stuff (I’m doing this for myself too, remember?) but if that’s not enough encouragement for ya, I don’t know what else to say…

Actually, I do, please keep reading:

I definitely didn’t expect to be going to Hattiesburg to see a hip specialist instead of my pre-op in New Orleans or did I ever even entertain the notion of having the surgery postponed. I mean… What!? Seriously?? Talk about a hell of a curve ball… and trust me, as a kid softball was never my best sport (although my tennis playing later in life wasn’t half bad); but I’m not going to worry about it anymore (or at least I’m here convincing myself of that).

I’m doing the best I can and know how with what I’ve been taught and have learned and that’s all we can do, right? It’s not inspirational, it’s human; Darwinism and survival of the fittest, maybe? But I don’t want to just survive, I want to live. I want to thrive. But sometimes, as I’m still learning, there are some things that are just outta our hands and simply beyond our control. That’s just life for ya- c’est la vie! Sometimes, we just gotta take it for what we can/will… (you take the good, you take the bad, and there you have…)

Sorry, I couldn’t resist. Let me get back on track…

Actually, I need to wrap this up because I’ve rambled on (there I go again, if you read my last blog *hintcoughhint* then you get that reference) for far longer than I anticipated, so if you wanted one last little dash of inspiration, just remember this:

1. We are NOT in control of what happens to us, only how we react to it. Attitude can change everything. Try to remember that “this too shall pass.”
2. We cannot be consumed or defined by whatever possibly life-changing event may happen to us. There’s no manual for life; you take it as it comes and you find a way to deal with it as it happens. (I guess that whole lemons and lemonade thing is actually true. May I also suggest sugar?)
3. To add my own 2 cents -or more literally, 2 words- to Sheryl Crowe’s popular hit song from 1997, “A Change ((of perspective)) Will Do You Good.” Really, just think about it. I’m sure you could think of many people much worse off than you. Now how do you feel?
4. Count your blessings, not your problems.
5. Always Finish Strong.

___________________________

Footnote:
**This marking in the second paragraph with the sentence in bold indicates that statement may or may not be entirely true. But if you made it this far…. Gotcha!

In final honor of the remarkable Maya Angelou, and because I could never pick a single favorite quote, here’s some of what I consider the most impressionable words of wisdom from the woman herself. I pray that they give you as much comfort and strength as they do for me:

27May/145

And if I didn’t think it was worth one single try, I’d jump right on this big bird & then I’d fly…

May 27th, 2014

If my life had a theme song, right now it would be Michael Buble’s *cue swooning* song aptly titled, “That’s Life.”

That’s life;
That’s what all the people say.
You’re riding high in April,
You’re shot down in May.
I know I’m gonna change that tune;
When I’m back on top in June.

Sorry Mr. Sinatra, but Buble is one of my big “man crush,” so I have to go with his version. The only thing is that I wasn’t riding so high in April and June is looking kinda scary with my anticipated bladder/bowel surgery now scheduled at Ochsners for June 16. If you’re on my personal Facebook page, you’re probably more than aware that I’ve been complaining (a word I cringe to use but it only seems appropriate) about all my recent struggles, because it seems to be one thing after another for a few months now. Well, let’s just be honest, it hasn’t been my day, my week, my month, or even my year.

Disclaimer- I make no apologies if that song is now stuck in your head… Blame Friends, not me.

To recap: I guess it all began with the horrible UTI I thought I had in late January that made for a long February where I often felt lethargic and unwell, which led to the 2 week PICC line in March to cure the still lingering infection; although the IV unfortunately didn’t work so it was followed by a week or two (if you’ve been on as many round of antibiotics as I have, you start to get a little fuzzy on timing) of oral antibiotics. The good news is I think it finally cleared the infection; however, the bad news was I seemed to have every possible side effect as a result of the antibiotics. It was just coincidental bad timing that I had a red spot on my bottom go from “being cautious” to “being stuck in bed for 9 days.” This all kinda happened simultaneously, so I’m still talking about mid-late March.

Still in recap: After being confined to the same 4 walls with the exception of showering for over a week, my red spot was almost gone. Therefore, I began getting up for just a few hours a day, especially because I needed to get busy for the Live Oak Festival that was a few weeks ago

In front of my booth at the Live Oak Fest

In front of my booth at the Live Oak Fest

Well, it didn’t take long after finally being back in my chair that I realized my spasticity had gotten considerably worse, which is usually an indicator that there is something wrong below the level of my injury. Now, I’m only a few weeks shy of my 4 year “crippleversary” (my endearing term for the anniversary of my accident), so by this point, I have come to learn the “new normal” of my body. And I knew something wasn’t right. On top of the increased spasticity, I could feel some sort of pain in the left hip area, a place where I’m supposedly paralyzed and unable to feel pain. Additionally, although I always joke about my thunder thighs and what my grandmother lovingly referred to as “birthing hips” (how lucky all us Blake girls got those genes to put in our jeans – it’s ok if you cringed at my bad joke, I did too but still couldn’t resist throwing it in there), it turns out my left hip/thigh really IS swollen and inflamed, and for good reason. Thankfully, the new SCI doctor, Dr. Folse, at Southern Bone and Joint knew the right tests to order -the 2 MRIs and bone scan- which I think brings us to the end of a long recap and finally to present day.

What’s currently going on: The last time I updated (not counting my Mother’s Day post), I was preparing for a long couple of weeks with the art festival, yard sale, doctor appointments, PT, and tests while also still battling the hip pain and potential pressure sores that were keeping me in bed more than I’d like. So what else has happened these last couple of weeks? While I’m still not completely healed from those spots, they’re pretty darn close -God forbid I jinx myself by saying that; however, I feel stuck between a rock and a hard place (or more aptly, a red spot and a bad hip). Regardless of which side of my body I lay (it used to always be my right side all night long with no problems) but now, I’m either on the red spot or on my painful and inflamed hip, so that’s been tough for me to deal with because I prefer to be on neither which isn’t much of an option. The only chance for me to be off all these issues is what my PT calls tummy time, which I’m actually beginning to enjoy because it’s a great stretch and not a position I can get in often. In addition to being physically difficult to get positioned correctly (especially at home on top of a memory foam mattress), I also have to be careful about my suprapubic catheter, plus I have yet to find a good position for my head/neck to be in for prolonged periods of time. Furthermore, I always joke I feel like a turtle on my back because I lack the strength to lift myself to do anything like phone/iPad/drink water/etc., so you can understand now why tummy time is usually only done at physical therapy.

So what’s up with my hip? Great question. And unfortunately I still don’t have an exact answer for it other than there is an obvious abnormality in my trochanter on the left hip. It’s possible that it’s bursitis, which means the bursa is inflamed, but evidently my whole left hip lit up the MRI (not the way I thought I’d light up a room) so there’s much more inflammation than just the bursa. This is when I really wish I had taken anatomy in high school because Lord knows how dangerous it has been trying to read about this stuff on WebMD. I think I’ve diagnosed myself with 3 different cancers, a few crazy abnormalities, some extremely rare degenerative diseases, and entertained the possibility of a tumor in about 30 minutes before I made myself get off that cursed website.

In case you’re wondering how I know some things but not the whole 411 is because I have yet to discuss it with any doctor; fortunately, some other of my therapists/folks in medical field have been able to read some of the scan/MRI to at least tell me there’s something abnormal going on. As much as it sucks (for lack of better wording) to find out that there is something wrong, I was happier to know that:
A. It wasn’t all my head.
B. I finally found a dr who knew what tests to order to try and find the problem.
C. Hopefully soon be able to start a treatment plan to fix the problem and resolve the pain and resulting symptoms.

Of course, I find out on Friday, before a holiday weekend at that, that apparently my new dr in Hattiesburg didn’t get the test results that I was assured were faxed to her when I went to pick up my own copy of the disc so I could show my PT and bro-in-law (Chiropractor). Let me tell you, if I ever have a medical issue or emergency, it never fails to happen on a Friday or over the weekend. Really, my track record is ridiculous. Well, in the meantime between calling my local hospital and Hattiesburg to make sure it gets faxed and had been received, I called my local GP to see about get a script for ANYTHING (strong anti-inflammatories, pain meds, muscle relaxers) to help alleviate the symptoms and bring me some relief over the long weekend. I should have also mentioned that early last week, even though I can feel the pain, I started experiencing some symptoms of autonomic dysreflexia (if you haven’t heard me describe that for the 100th time, go on and google it). Basically, I’ve been feeling like crap, blood pressure is all over the place, occasionally getting a random pounding headaches, aches and chills, and been running a low-grade fever pretty consistently for the last week or so. Even when my fever is very low/almost normal (my “new normal” body temperature is around 97 degrees and not 98.6 – it’s an SCI thing), I have been BURNING UP whereas I usually run cold. The back of neck and stomach feel like they’re on fire as I type this despite having my AC window unit on 71, fan on high, and ice packs on my hip/thigh/butt. Ladies, if these hot flashes are anything like menopause, I’ll tell ya now that I ain’t gonna make it.

So I heard back from my local GP around 3 on Friday after she is able to access my results since I had them done here locally. Apparently, after finding out I’d been having fever and other symptoms, she was concerned enough by what she saw that she immediately had me come do blood work to make sure there was no infection in the bone marrow (sounded scary enough to make me panic). Fortunately, the immediate results came back fine and dandy, although it will take a few days for the other results and it is now, of course, 4:00 on a Friday before Memorial Day weekend. I told you, I have impeccable timing. Oh, another I never heard back from Hattiesburg that day so I’m still not 100% sure if they finally got the fax. I also don’t know if my doctor/her nurse will discuss my results over the phone or try to schedule me to come in within the next 3 weeks, so there’s that, too.

Yep, that’s pretty much it, I think. I’m usually pretty good at “fake it til I make it,” but this week has been extra rough on me physically. I think fever does that to everybody, but the lethargy and achey-ness of my upper body seem to get worse every day. Not to mention, I don’t think I’ve ever slept so much. I know I put in almost 12 hours Saturday night and took a good almost 5 hour nap this afternoon after sleeping for 8-9 hours last night. Talking about all this sleep, and considering it’s about 11pm as I type this, is making me sleepy itself (thankfully because I thought for sure that sleeping all day was gonna mess me up tonight). I have always been a girl who loves her sleep and usually require 7-9 hours a night if anyone expects me to be little Miss. Sunshine, but lately it’s been ridiculous how exhausted I feel literally ALL. THE. TIME.

I know the first things on my agenda for Tuesday is calling both my Hattiesburg doc and my local GP, because now that the results are in, I need some answers so we can start treating it as soon as possible. I’ve learned to somewhat deal with the pain, but the dysreflexia symptoms, fever, fatigue, and still intense spasticity (that no amount of different medications have been able to relieve) is physically wearing me down. Not to mention that my upcoming surgery is only now down to just 20 days away. In fact, I go for my pre-op at Ochsners this upcoming Friday; however, because of what seems like the seriousness of the results of whatever this hip issue is, I’m wondering the likelihood of being able to alleviate the abnormality prior to my surgery or if my new doctor will recommend me postponing this surgery until we fix my hip – which is the LAST thing I want and don’t even want to think about anymore.

So there’s all my medical drama for essentially this whole year (is it really already almost halfway through?) and the latest update on the craziness of the last few weeks and everything I know at this point. I’m praying that I will know more by the end of the week, even though these last few weeks have truly been a day-by-day type of life. There’s so much I want to be up doing, but know I need to try to stay off my bottom until those spots are completely healed – it’s only taken me how long to learn this lesson? And the hardest of ways, at that.

In addition to preparing for the upcoming surgery, painting some long, over-due custom orders, and now fighting a battle over van modifications (that’s a whole other saga I lack the energy for at the moment), I’m doing my best to remain positive although I feel like poo. I keep reminding myself that God does have a plan and my recovery is on His timing, not my own. I’m just so anxious to regain my life and independence back, especially coming up on 4 years -on Friday the 13th of all days- next month. I know I’ve come so far, but I wish I were further. And Lord knows how hard I’ve prayed for the faith and strength to continue to work towards my recovery, way more so these last few weeks with all my struggles I’ve been facing lately. I hate the feeling of being such a burden to my family and am doing all I know to do when I feel physically well enough to do them, so I will continue to pray for the determination and persistence to push through yet another obstacle because I feel lost without any other options of trying to fight these battles by myself. I’m not giving up, but I gotta be real and just telling you that gimpin’ ain’t easy.

Once again, this has become much longer than I anticipated and I’m starting to think I’m incapable of being concise – ex., I recently wrote an email in regards to my van modifications that turned out to be 4510 words long… Whoopsie! On a final note, I have added 20 new prints and 5 new notecard designs that are now available to buy online and working on putting my leftover original canvases for clearance hopefully sooner than later (it’s a process) so be sure to check out my new stuff and know that a “Summer Sale” is coming to a Rehab for Katy store near you — on the internet can technically be considered near you, right? I say yes.

Keep in mind that if any of this makes no sense or if there’s a ridiculous amount of grammatical errors, I’m kinda delirious from the fever and my eyelids are getting too heavy to properly edit. At least that’s been my go-to excuse for the last few days. Before I continue to ramble on (“and now’s the time, the time is now, to sing my song…” Major bonus points if you get that musical reference), I will finally end this blog on a quote that has become my mantra this last week:
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11May/141

Dear Mom,

May 11th, 2014

I’ve copied/pasted this from all my social media sites because I think everyone should know how awesome my mom is,

Warning: very long post (but totally worth the read)
Of course, like everyone else, I have to give a public shoutout on this Mother’s Day to my amazing mom for the beautiful (both inside and out), classy, dependable, loving, giving, caring, and all-around amazing mom that she is. Thank you, Mom, for all the many amazing lessons you have taught us, the values and morals you’ve ingrained in us, and all the sacrifices you have made for all of us -me especially- ever since we were born. I can honestly and proudly say that we were raised right and I wouldn’t trade you for any other mom in the world. It would take me a million years and I’d still be indebted to you for all you’ve done for me.

For those who don’t know, wihout any hesitation, mom came to Hattiesburg the night of my accident and spent 99.9% of the next 4 months in the hospital/rehab right by my side (we finally convinced her to go home once, I think, after like 2 months); whether it was sleeping in the ICU waiting room, my hospital room, or a borrowed RV out in the hospital parking lot -something she swore never do again after Hurricane Katrina- she was always there. She became my advocate when I couldn’t do it myself, she gave me strength when I was weak, and certainly went above and beyond to modify her home for me. She has let me live here for free until I’m back on my feet (figuratively) and has most certainly helped me more financially (both before and after my accident) than I would like to admit. She has sacrificed so much of her own life, time, and ability to be my primary caregiver (especially going with me to Shepherd on two different occasions, which meant being away from home for a combined 3 months); not to mention running the roads from Louisiana to Georgia with the millions of doctor appointments, therapies, and always caring for me when I have my many SCI issues, regardless of what she has going on at the moment.

She has made all my fundraising and returns to rehab endeavors possible by doing the bulk of the heavy work that I’m physically unable to do myself. Some would think any mom would do this for their child, but I know far too many folks my age and younger that are put in nursing homes because their parents were simply unwilling to do the work -because trust me, it’s definitely not easy- although I try my best to help as much as I physically can to make it as easy as possible. My mom is, without a doubt, the STRONGEST person I know and I can only hope to one day have half the strength and faith she possesses. She has taken the role of both mom and dad since 1998 and I can only imagine how proud my Dad and my Grandmother (her mother) must be looking down from Heaven and seeing all she has done for all 7 of us. God truly blessed me with her and many times I feel like I don’t deserve her and all she does for me. I’m proud just to say to people that I’m her daughter and can only pray to be half the woman she is. On my toughest days, when my SCI has me so overwhelmed and feeling defeated, I remind myself that I’m working to regain my independence for her sake just as much as I am my own, if not maybe more for her anyway. There is no way I’d be where I am or who I am today if it weren’t for her and words can never explain how grateful and appreciative I am for her and all she does. One great thing about my injury is that it’s given me the opportunity to become so much closer to my mom; she has become my best friend and confidante and I really don’t know what I’ll ever do without her. I hope I can make her as proud of me as much as she has made me proud of her. The words “thank you” are not nearly enough to truly express the depth of my gratitude and love for her. Happy Mother’s to all the great moms out there…. but sorry, mine is the best! I love you, Mom

Ps- this will likely be posted publicly on Instagram, both FB pages, and probably my blog so everyone can read how awesome you are.

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