ER Update

I rarely go to the ER. In recent memory, I have only gone twice before. The first time I thought I was dying (Spoiler alert: I didn’t). The second time I wanted to make sure my kidneys were ok (This trip earned me my first nephrology appointment). But the point here is that I rarely rarely go. Normally I go to an Urgent Care clinic or I make a doctor appointment. I just don’t do ERs. And I especially don’t go for something like pain… I can put up with that at home right? Wrong. So very wrong!

To be fair… I attempted to go to the Urgent Care clinic first.

To be honest… I really didn’t put up a fight when they suggested the ER.

My day started off alright. I woke up with no pain. Walked over to the mirror in no pain. Then I stretched. PAIN!! All of a sudden something cracked in my neck, my muscles all went into spasm, and I could no longer move my head without excruciating pain. I also had a wave of panic that I had seriously screwed up my spine. I was terrified that one wrong move would result in something worse than pain. I get a little paranoid when it comes to my spine.

So I took a shower, hoping that the warm water would relax it. When that didn’t work, I called my mom (yes, I still call my mommy when I’m sick) telling her what happened and that I was going to go to Urgent Care. Once there, I sat in the waiting room for 2 very painful hours. When I was finally taken back, they performed an xray which showed that the vertebrae were fine. Then the lovely doctor came in, told me everything was good, that I could go home, and that I should take Tylenol for the pain. That was the point where I burst into tears. Sobbing that Tylenol did nothing and that my stomach couldn’t take any more NSAIDs (Throwing up blood? Yeah, not fun.). I think that was also the point where the doctor finally realized how much pain I was truly in. He suggested I go to the ER to get a CT scan and get it looked at better. So that’s what I did. The end result was that there was no new damage to my spine, but my muscles were being completely pissy. Thankfully they sent me home with a muscle relaxer and some vicodin.

It took about a week for the meds to relax the muscles. That was pretty much the week from h*ll.

In other news… I got a new toy!

Dammit doll 1Dammit doll 2










I’m sure this will come in handy in the future!


Working With a Chronic Illness and Limitations

Being able to work is something that comes easily for most people (assuming you can find a job) but is rather difficult for me and anyone else suffering with an illness. The fact that I am able to work 30-40 hours a week while going to graduate school with a chronic illness is something that I am very proud of.

Unfortunately, at times, I feel like this is a perfect example of the saying: “Pride goeth before the fall”. Just because I do work that many hours, doesn’t mean I should work that many hours. Both times I ended up in the ER last semester, I was in my work uniform. Which is not a sexy look…believe me on that… I know without a doubt that the last time was a result of my pushing myself too far. When I stupidly push myself too far, bad things happen like blood and protein in my urine, elevated CK levels, and a slight leaning towards acidosis. I’m not sure why this happens, but it’s definitely a trend now. I can now reliably predict when I will have elevated CK levels. For these things to happen because I choose to work a shift the day after doing a bit of yoga is a tad ridiculous though. Sadly these are the realities of working with a chronic illness.

I didn’t understand this at first. Before I was as bad as I am now, I thought that I could push myself through anything. That hard work and perseverance really did make up 99% of success. I never thought that I could be limited by my body. Exhaustion is one thing, but bloody urine? Muscle breakdown? Those are HARD limits. Those are the types of limits that could start a downward spiral. And then what happens???

I don’t know.

There’s the catch. I don’t know what happens when/if I crash. I don’t even know what a “crash” would entail. Whether I would come back from it or whether it would represent a new limit that I would have to live with. There are so many unknowns with chronic illness. So you have to decide what is worth pushing those limits for. Right now, work is worth it to me. Work represents independence for me. I am able to support myself and live on my own. I am able to make my body do what I want in order to get what I want. That is what work is. I’m afraid that this may not always be the case, but for now I’m able to do it.

guardian angel

Update: ER Trip

I’ve only gone to the ER once before in the past 10 years or so. I try to avoid going to the emergency room at all costs and it takes a lot for me to finally go. I went last night. 

Some background: I had a yoga class on Monday. I was scared to go to yoga, fearing that with all the funky things going on with my body of late I would crash hard. My latest symptoms, a little over a week ago (continuing the two week trend of experiencing new random horrible symptoms) was my vomiting old blood (I learned a new medical term: Coffee Ground Emesis! I think I would have been better off not having learned it). I didn’t know at the time what it was so I didn’t go to the ER then. Once I did learn I figured that since I have a GI appointment soon, I can get it taken care of then. But between that and my overall feeling like crap, I was worried. I managed to survive yoga without much trouble though! Yay! Go me!

It was the next day, Tuesday, where things started to go down hill. I was in so much incredible muscle pain that I was to the point of crying at work. It got so bad that I eventually broke down and took Aleve (a drug that I had stopped taking since the vomiting blood incidence). A lot of Aleve o.O (Not “OD” a lot, just a lot for me). That in itself didn’t send me to the ER. What finally convinced me was the brown urine. 

So off to the ER I went. The doctor checked me out. Confirming that I need a scope (colonoscopy and endoscopy…yippee…) but didn’t address them then since the GI appointment is now in only 5 days. He did do a urine analysis, a renal function test, and a creatine kinase check. I have a lot going on in my urine. On a scale that is measured with: trace, 1+, 2+, 3+ and 4+. I have hemoglobin (3+), protein (2+), ketones (trace), and bilirubin (1+) in my urine. I keep thinking that at least now I know the brown urine is “only” due to blood and then having to remind myself that that’s not good. So I think at some point I get to see a urologist. My CK levels were also increased which isn’t so cool, but I already have been tested for that (although, it was slightly terrifying when the doctor kept looking at my calf like a slab of meat and talking about a muscle biopsy…even after I said that I had a normal EMG). My renal function tests were good (Thank God!). Although, my anion gap was slightly increased and my carbon dioxide levels were low. 

So now at least I know when I have the brown urine, it is “just” blood. I’m not exactly sure if that’s good news or bad news though. Another thing for me to get taken care of I guess. 

In other news, I have a genetics appointment on Friday!! This is like a pilgrimage type thing for those of us with EDS haha. I’m hoping she can connect all the dots and maybe even supply some answers (like why I have blood in my urine, stool, and vomit!).