How the hell did I do that?

It’s Sunday… 6:45 am and I up fiddling around with my wordpress page ’cause I can’t sleep. It’s been a while since I posted last. About two years ago to be exact. My last entry talked about my desire to know where “lupus” came from. I have to be honest in saying I’m not any closer to an answer. Not that I was expecting some monumental revelation by this time, I just find it interesting that I’m still pondering that question on the same level.

I guess a lot has happened in two years. I moved to Jersey, got a new job and was accepted to Rutgers Diagnostic Medical Sonography program which I started in the fall of 2016. Not to mention moving in with my boyfriend putting an end to the whole long distance thing. There were certainly bumps and snags along the way, but for the most part, I seemed to be juggling things quite well. Or at least I thought.

You ever have a moment of reflection and think, “How the hell did I do that?” Well, one day my body finally let me know in the form of a lupus flare, which I jokingly refer to as Lupocalypse 2017, that I was doing the most.  When I first started school, I was working full time. And I’m fully aware that people do it all the time. But to understand the intensity of my situation, let me explain a few things. First of all, I’ll explain the nature of my job. I was a counselor for people with developmental disabilities. When I say counselor, that can mean anything under the sun. Bathing, feeding, dressing, giving medications, driving, supervising in the community, etc. You’re basically helping them live their lives. When I started, I was in one of the hardest group homes within the company. There are different levels of dependency with these individuals. So what made this particular house challenging was all four members had a very high dependence level. They all basically needed you to do everything for them. Right down to changing diapers. I don’t want to sound like I’m complaining about the job. There are some very rewarding aspects. Nonetheless, it’s a difficult job.  Quite frankly, people should be getting paid a hell of a lot more for it. But that’s a rant for another day. The point I’m trying to make is that it was challenging working full time and trying to complete a very intense, 15 month accelerated program at school.

A normal day would consist of waking up for school at 8 am or 6 am (depending on whether I had class or clinic). After class or clinic I would head straight to work where I engaged with the group home clients until around 11 pm. Also important sidenotes to mention are I never ate breakfast in the morning and a lot of these days I was carpooling with a classmate who I would take home after clinic, then drive all the way back to work in rush hour traffic on the other side of town. This went on for about 6 months. And if this doesn’t seem crazy to you yet, imagine also having to wake up on Saturday and Sunday mornings for work to keep your full time status. It wasn’t easy, to say the least. And now that I have a moment to reflect since Lupolcalypse 2017,  I really wonder “How the hell did I do that?”

I can’t remember exactly when, but sometime between January and April, I noticed a little swelling in my feet and ankles. I’ve had this in this past with kidney issues. But since the swelling wasn’t too bad and I didn’t have health insurance at the time (by this time I had dropped down to part time at work), I sort of just brushed it off. I admit this was pretty neglectful on my part. It’s hard trying to rationalize certain things to someone who doesn’t live with a chronic illness. So I won’t make an attempt. Let’s just say I had my reasons. Anyway, towards the end of April I started feeling a general sense of malaise. I couldn’t really describe it. I just didn’t feel right. On the last day of April, I had intense UTI symptoms along with the malaise and decided to drive myself to the emergency room. And this, my friends, is how Lupocalypse 2017 began.

 

(Stay tuned for next post 🙂 )

Where does Lupus come from?

So anyone who has lupus has had this question at some point or another. If you’re like me, it haunts you at least once a day. I mean you deserve an answer, right? After all, you were just minding your business, going about your life, enjoying your twenty-something’s. All of a sudden you’re struck with this mysterious thing. This thing that keeps you up at night with pain in your chest when you breathe in and out. This thing that causes some weird pain in your left shoulder, left side of your neck and random headaches that range from mild to day-stopping. This thing that scares the shit out of you whenever you have a pain in your lower back region because your mind automatically flashes back to the time you spent two weeks in the hospital for a kidney flare.

Pleurisy. That’s the name the doctor’s give to the chest pain. For different reasons, inflammation strikes the thin layers of tissue (pleura) that cover your lungs. For lupus sufferers, inflammation is the bane of our existence and this can easily be a normal symptom of the disease. But ok…it is what it is. I’ve come to learn to deal with this symptom the best I can.

I suspect the weird pain that radiates the left side of my body is nerve related. When it first started happening to me, I lived in fear of having a stroke for nearly a year. I’ve had three MRI’s in hopes of this magic machine detecting something. Each time, a different doctor gives me the same results. “We didn’t see anything.” In the beginning I felt some type of way. I mean what am I supposed to do? Sit around and wait for my brain to be possibly permanently damaged? But again, it is what it is. This, along with the fear that accompanies my back pain, are other things I have learned to deal with the best way I can.

So not to toot my own horn, but I’ve been a trooper when it comes to this thing. I go to routine doctor appointments even when I’m not having complications. I take the medications the doctors prescribe to me, for the most part. (We’ll talk about that later…totally different post). I go through weird, random symptoms every day now, or at least it feels like it, and I don’t complain to anyone. (I hate burdening people with talks of my condition, especially when everybody has their own s#*& to deal with. Plus after a while it starts to feel like self-pity). Having said all of that, I feel I’m entitled to certain information such as the origin of this mysterious, life-altering disease. I remember my first appointment with my rheumatologist in Baltimore. After dealing with the initial shock of the diagnosis, now I’m ready to try and move on with my life. Sitting on top of the table in the examining room, my eyes are nervously darting around the room. Certain things about doctor visits always make me uncomfortable for no particular reason. The generic pictures they always seem to have on the walls. The sound from my pants and those paper sheets on the examining table making friction. And those latex gloves. Those damn latex gloves. Anyway, I’ve been waiting months to see her with that burning question on my mind. The visit went pretty quick. At the end when she asked if I had any questions or concerns, I presented her with that burning question. “Where does Lupus come from?” I expected her to give me an extremely technical answer that I was almost certain I would need broken down into layman’s terms. “For some people its genetic…for the most part it’s unknown.” That was it. That was her answer. In my mind I’m thinking, “So basically what you’re telling me is you don’t know?”

Needless to say, I wasn’t satisfied with this. So I decided that I would figure it out. At twenty five years old, I was going to crack the code and answer the question doctors and scientists had failed to answer thus far. Where did I turn to do this? The internet of course 🙂 After weeks of researching online, what I found out was lupus mostly affects women of child bearing age (particularly women of certain ethnic backgrounds). The symptoms can vary from person to person and no two people have the same case of lupus. Every website I visited offered the same explanation for the cause of lupus…it’s unknown. Well, that ends that.

As time went on, I started to hear different people’s theories on the subject. Some people think its diet related. Some people believe it’s directly related to the stress that one experiences in life. And if you ask a Jesus freak, they might say God had a reason for it. That reason might be bad or good depending on your life and how you choose to perceive it. So back to square one.

As for me, I have given up trying to answer that question specifically. Now what I’m attempting to do is become more in tune with my body. Listen to what it’s trying to tell me. There’s no doubt that it’s communicating with me all the time. With every breath, every ache, every moment of inexplicable fatigue, it’s trying to tell me something. An important part of my journey now is breaking down the communication barrier between us, my body and I. That’s where defining lupus will start for me.

My First Post…Yay!!

So I’m finally doing it. I’ve been saying I want to start a blog for the last umpteen months. And now I’m sitting here in the enormous library at my school. The noise of the clicking and clacking from the keys of my laptop are only rivaled by an occasional sigh from the flustered girl sitting in the cubicle across from me. She seems to be literally on the verge of pulling her hair out. (Finals week) Anyway, I’m excited about this! I really am. I get to share my thoughts and feelings the best way I know how. Writing it down. So here goes.

I’m Terrace. But I’m growing more affectionate of Tee…it’s short and cute. When I was just shy of 26, something unexpected came into my life. LUPUS. For anyone who has this condition or if you love someone who does, just the sight of those five little letters evokes such indescribable connotation. For anyone who may be reading this and is not quite sure what lupus is…join the club. The people who have it don’t really know what the hell it is either. Ha Ha! You can laugh, that was funny. No but seriously, in a nutshell, it is an auto-immune disease. Auto-immune meaning for whatever reason my immune system has gone haywire and is failing to recognize its own parts as…well…its own parts. This can lead to a broad range of symptoms and issues. And there are many other conditions that fall under the category of autoimmune such as celiac disease, diabetes type 1, sarcoidosis, sjogrens syndrome, RA (Rheumatoid Arthritis) and many more. For a long time after I was diagnosed, I felt lost and confused. Because I knew absolutely nothing about lupus, I was looking to absorb any bit of advice anyone offered to me. Even if they weren’t a medical professional. In the beginning I clung to doctors’ instructions as if they were the most sacred words I would ever hear. The title of this blog Defining Lupus…Defining Me just means that over the last year or so I realized that I do have some influence over the way I feel. So while I still go to my routine doctor visits and take medication daily, I’m now supplementing this with adding more healthy nutrition to my diet, seeking my spiritual awakening, and surrounding myself with beautiful and positive people and things.

One major thing I did in the early stages was  axing red meat. And trust me, I’m not saying that with a self-righteous finger pointing at anyone. Truth be told, I wasn’t much of a meat eater to begin with. So for me, it wasn’t a big deal. For a long time I continued eating chicken, pork, fish, and turkey products in lieu of red meat. About a year ago, I met a man who is a “vegan” for lack of a better term. We quickly developed a strong connection and he opened up a world of untapped knowledge about alternatives to meat. Just like starting this blog, trying the world of vegetarianism was something I had been meaning to do for umpteen months. I thought “What the hay!” Having him there was just the inspiration I needed to take the leap.

So my current situation:

no red meat

no turkey

no chicken

no pork

And before anyone comes running at me waving their flag of dissent claiming a “lack of protein,” I do still eat fish. I also eat lots of beans, peanut butter, and  veggies that give protein. So what does that make me? Certainly not a vegan. A vegetarian? I don’t know since I still eat fish. (I’m not even gonna open that can of worms) Who cares. I never cared for labels anyway. Right now I’m just someone who’s trying an altered diet. If it helps me to achieve better health, that’s awesome. If not, that’s okay too.

Since it is therapeutic to get things out of me, I will share a snippet of what my initial experience with lupus was like.

 I remember a constant feeling of bewilderment for months. Rashes, body aches, swollen legs and ankles. Some people thought I was pregnant. Some people thought I just had a weird bug that was nothing to worry about. Some people thought I was crazy and this was all in my head. Some people probably still do. For one microsecond in time, I think I thought I was crazy. Piercing chest pain from what felt like a heart attack quickly knocked those thoughts out of my head. I couldn’t be imagining a pain like this. It had to be real.  Lying on a stretcher in the local Urgent Care with my dad standing over me attempting to console me was one of the scariest moments in my life. They were telling me I had to be transported to the big hospital to undergo lots of tests. Everything happening around me served to heighten my sense of fear. When I got to the big hospital, undergoing tests lasted an entire week. Within this week I contemplated life. I evaluated all my close relationships. I read. I cried. I slept. I cried some more. And I waited. Waited for labs. At the end of a week, the doctor came and told me I had lupus. “Take care of yourself,” he instructed before ordering a nurse to give me my discharge papers and leaving the room. His words couldn’t be more vague. So there I was. Checking out of the hospital and checking into an alternate reality. Nothing would be the same.

 

Now that I’ve released some intense thoughts and memories, I’d like to end with some positive vibes. Nobody can be sad listening to reggae 🙂 Til next time. Enjoy!!