The craptastic week

Today was a rough day for me. Well, truth be told, it was a horrible, couldn’t wait for it to end, never want to do it again, kind of week. After I logged off of work for the day, I sat in my bed and cried. The tears just kept coming and I cried for about an hour. The thing is, I rarely cry. I used to be a crier, but after all of the things I went through over the past few years, I learned how to stop the tears before they surfaced. Since then, crying is just something you won’t catch me doing, well, except for today apparently, oh and the days when the pain is so bad I wish I could cut off a body part. So, once my pillow was soaked and the tears subsided, I sat there questioning why today, I did something I hadn’t done in a long time.

I knew I had a hard day at work. Typically work is my escape from my crazy life. During work I don’t think about my marriage that is almost non-existent, I don’t think about what is waiting for me when I leave my parents and go back to Austin. I don’t think about this disease and what place it will attack next. Work is the place where I know I can succeed and I am not defined by ANYTHING except what I produce. But today I realized, I can no longer rely on work to be my escape from reality and that was what sent me into Sob-Fest 2012.  Well, yes, it is what sent me into Sob-Fest 2012, but there were many events leading up to it, too.

I went to Austin Monday to visit both my neurosurgeon and my doctor who sees me monthly for my RSD. The neurosurgeon told me my recovery was going well and just advised me to keep an eye on the surgical site for about six more weeks. Victory: one down, one to go. But then I visited my pain doctor. During my visit, we discussed some new symptoms I was experiencing in new places, he checked me thoroughly and gave me the news that I already knew was coming, but was still just as hard to swallow: my RSD, which used to be isolated to my left leg and neck, had spread to my right leg, shoulders and ears. As he sat there, figuring out the new cocktail of meds I would be on this time and what other symptom treatment options there were, I sat there, feeling nothing. No sadness, no anger, no frustration. Nothing. Given this disease is the worst thing that has ever happened to me, one would think I would have some sort of emotion over the fact that my disease has spread, but nope, not me.  Not Julie, the Icequeen (nickname compliments of my estranged husband). As I said, over the years of heartache, distrust and sadness, I had learned to shut off any negative emotions as a coping mechanism. It proved beneficial for a while, but once I separated myself from the toxic relationship I was in, I thought my emotions would come back. Well, they didn’t. With a smile on my face, I took my pile of prescriptions and left. As I was exiting the office while digesting the most recent news, I received a string of rude and angry texts from my husband. Very nice way to top off an already unpleasant situation, but still, I was not fazed and carried on with my day. We got home Monday evening and I went straight to bed as I was in a considerable amount of pain. Most RSDers I know don’t tolerate car trips very well and I am no exception to that.

My RSD continued to be pretty unbearable through the week; I suffered from every symptom this disease has to offer. I know I mentioned some in my first or second post, but for the record, they are(and yes, they all happen at once):

·   burning pain (like, several of my body parts are on fire, pain)

·   stinging pain (like, a million bees are stinging me all at once, pain)

·   spasms (like my muscles were doing their own excruciating exercise)

·   insomnia (such as not falling asleep at all or not falling asleep until 3am, then waking up at 5am, falling asleep, waking up, you get the picture)

·   allodynia (sensitivity to touch) (I had to wear spaghetti straps and have my hair up because anything that touched my neck or shoulders (yes, even clothes or hair) caused pain worse than anything you could ever imagine). I cannot paint my toenails because even the brushstroke of it hurts like heck. 

·   inflammation (also causes discoloration of the flaring body part – visual below)

·   brain fog (I could be telling a story and mid sentence, completely forget where I was going next)

·   irritability – we all know what that is. It sucks.

On the left, you will see my foot in a flare. I do not normally have cankles, but my ankle

and foot are very swollen. You can also see the discoloration - usually a mix of a bluish,

purplish, redish tint but it's not always the same. And no, my toes aren't cutoff, they are

curled in completely due to the pain. With my new stimulator, sometimes my toes will

loosen up, but not completely. In some cases, this can be permanent. My toes have been

this way since February. On the right, you can see part of my shoulder flare. My shoulders

seem to turn bright red and it covers the back, top and sometimes rolls over to the front of

my shoulder/chest area. 

Yes, I suffered from every single one of these symptoms this week and now they were in new places. Yesterday, I woke up and there was a sore on my ear. It looked like I had scraped my ear on the pavement and it was now scabbing over, but the pain from it was so bad I couldn’t even lay my head on my pillow. All of this courtesy of RSD.

So, just to recap what led up to today: I had a doctor appointment at which I learned my RSD had spread greatly, I received very angry and unpleasant texts from my husband and I experienced EVERY symptom RSD has to offer all week long, not to mention, I try to hide the pain I am feeling as to not overwhelm everyone I'm around and that takes A LOT ouf of me. OH and I forgot to mention, I got to stop by the office on Monday to pick up a few things and realized how many people there were in Austin that I missed terribly – my few friends, my very small Austin-based support system.

So now today: I signed on early to work because that’s my thing: I always work. Two days after I was released from the hospital, I was back working. Some say it’s a bad thing, I think it’s dedication, an escape (or used to be), a good use of my time and a way for me to avoid 5,000+ emails piling up in my inbox. But just because I can normally suppress all my emotions and focus all my energy on working, doesn’t mean it is fail-proof. And today, I learned just that. I attended a meeting right before my shift ended and received some unexpected news. It was nothing horrible, I wasn’t fired or demoted so no one panic. Like I said, it was just unexpected.  Well that unexpected news hit me harder than I could have ever predicted and it kicked off Sob-Fest 2012. Along with the crying, I felt every negative emotion I could think of: anger, betrayal, frustration, lost, hopeless, hurt, upset…the list could go on and on.

If you haven’t read any of my blog posts so far, stop reading this right now and go read my first three. For those of you who have read the first three, you know I take life in stride and have learned to be happy, content and positive, despite my situation. Today made me question if that was really the case. Was I really happy? Content? Positive?

And then I read a personal message on Facebook from a newfound friend. It reminded me who I really am and what I was feeling, while it was valid and ok, was simply temporary. Yes, I am struggling right now, but that does not mean I have to have a negative outlook on the world. Things happen and they always will happen. My job can’t be my escape; honestly, I don’t know if it ever was. I could wake up tomorrow and not be employed, so then what would I do? Seriously, I asked myself this question. And then I realized, I would be ok. But come to think of it, nothing should ever be my escape. I live in reality and I do just fine. I should have never dubbed something my "escape" when I am ok living in my own reality and facing what I have going on in life. My week has been bad. Everyone has bad weeks. But I refuse to let this week change the way I truly feel.

So if you are having a hard day, week, month, even year, it doesn’t have to negatively impact the way you think or feel in general. I am saying this because it is true and I’m also saying it because now I have it in writing and I can refer back to it when, not if, but when I have another hard week. Right now as I am sitting here writing this, I still feel some of those negative emotions. But, I can promise you they will fade away before I wake up in the morning and my outlook on life won’t change. I will still be happy. I will still be content. And I will definitely, most certainly, be positive. If you go through life struggling with unhappiness or surrounded by negativity or even struggle with it from time to time, then do me a small favor and stop for a moment, close your eyes and think about this: what makes you happy? What makes you feel content? What is something positive in your life? If you ever again find yourself feeling negative emotions, then turn your focus to those things and I guarantee you will feel better. It's what helped me get through today. 

Until next time :)