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.