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.”