Graduation Day

Today was my graduation day. I officially have a Master of Science degree in Biology. I had huge doubts as to whether I would ever see this day. I assumed that at some point I would just give up and drop out. When I think about all that went into getting that degree…

My graduate career started a few weeks even before classes starting when I told my family doctor about my education plans. He advised me that I should not attempt graduate school. That the state of my health was precarious and taking on such a stressful task would be ill-advised. By the time classes started, I was beginning to think that he was right. Within the first week of classes I was already missing school because of an emergency scheduled heart catherization test. Once that test came back negative (thank God), it took just a few more tests and  finally the Tilt Table Test which diagnosed my dysautonomia. After this initial large hurdle, however, I started my beloved beta-blocker (we’re tight.. it’s a love-love relationship) and things got easier for that first year of graduate school. Every now and then I’d have a problem and I’d have to adjust my meds, but it was manageable.

What I hadn’t counted on, however, was the toll that school and work and the stress of it all was taking on my body all throughout grad. school. This became clear by my last semester of classes.

I started off that semester wearing an Event Monitor for the first three weeks. I was the girl wearing the funny electrodes and attached to a machine that occasionally “beeped”. This was the semester that I was in a doctor’s office every other week, I was in the ER a couple of times, I had countless medical tests, and once again I was missing classes for being sick.

Things were starting to drastically go from bad to much much worse. I was throwing up blood and lost over 10% of my weight, but the end was in sight. I managed to finish out the semester and the last of my classes required for my degree. I was very fortunate that I had one sympathetic professor who didn’t mind that I was half comatose in his class, with my head on the desk nearly every day, and another professor who liked me based on previous performances as an undergraduate student (I went to the same school for both undergrad. and grad.).

After that semester I slowly dragged myself back to health with rest, relaxation, and thesis writing. So while I never fully believed I could do it, especially in that last semester when things got so difficult, I successfully wrote and defended my thesis and graduated today!

Also, apparently, I’m very talented at pretending to be excellent when actually I’m just trying to get by.

Notice my feeble attempt to remain anonymous despite knowing that probably half of you already know who I am..

Notice my feeble attempt to remain anonymous despite the fact that probably half of you already know who I am..

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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

How strong do you want me to be?

I was answering a survey about my illness the other day and was really stumped when I came across the question: “How have you benefited from your illness?” I was shocked by this question. The person conducting the survey has a chronic condition herself. Are there certain things that she’s happy about in regards to her illness? Do others feel this way? Am I missing something important? I struggled to come up with an answer and finally wrote this:

Being diagnosed and suffering with this illness has shown me how strong I can be. I have faced things that make others cringe. I have seen a look of such compassionate pity in my doctors’ eyes that scared me. With each appointment I am faced with a new complication, a new diagnosis, a new referral or specialist… But, despite all this, I have managed to achieve amazing things. I am in graduate school, despite my doctor telling me that I shouldn’t put that stress on my body. I missed classes my very first week due to a heart catheterization test. I have thrown up old blood one day and then gone to a final the next. I am still able to work in a physically taxing job. I have worked a full 8.5 hour shift and then gone directly to the ER. Dealing with this illness has shown me how STRONG I am. I know now that I am capable of handling these things with grace and integrity. I know that I won’t crawl into a depressed slump and let my life pass by when faced with harsh news (that’s not to say that it doesn’t still upset me). I am grateful to this illness for showing me how strong I am.

 

Writing this, however, I knew it was a lie. Yes, I am strong. Yes, I have achieved a lot. But how much more could I have done without the illness? I AM strong and what could that strength have gone to if I wasn’t always struggling just to hold myself together? How much happier would I be without the struggles and pain of my illness? As I wrote my answer, all these things went through my mind with the subheading of liar. So I added one last bit to my answer:

While the strength is nice and reassuring it can’t make up for what I deal with. This illness has taken so much from me. I would rather be weak and happy than strong and sad. 

Knowing that I am strong enough to be able to work a long shift at work in severe pain, urinating brown urine, and then calmly taking myself to the ER doesn’t make me happy. It doesn’t change the fact that I’ve missed work due to tests and appointments or that I have been the subject of scorn and abuse from my coworkers for calling off so often. Being strong enough to take a final a day after throwing up blood and barely being able to get out of bed, doesn’t change the fact that I was in so much pain during that final that I could barely think straight and almost walked out of the test. The strength isn’t worth watching my dreams wash down the drain due to one bad semester (graduate school rarely has mercy). I’m not sure that I even view it as “strength” anymore. Being weak or strong isn’t going to change my illness. It’s not a trade-off: weak and healthy or strong and sick. At times I don’t even know what is strong and what is weak. Whether I am one or the other. In the end I am just trying to survive and live my life. Am I strong for simply surviving and going about my life as I would anyway? What other choice do I have?