[First post of 2012! I have had “write blog post” on my to-do lists since January, but then my blog platform was hacked and plagued with spam, and it took some time to figure out. Recently when I have logged in, I have had to re-type my password and click that box “Remember me” so that I don’t have to type anything in the future. It feels right to have to check that: Remember me.]
Shortly after I wrote the last quick post in December, I got featured on the Etsy blog in the Quit Your Day Job column, which was an extraordinary honor and a truly fulfilling piece to write. For the first time possibly ever, I got to tell my story of how I went from teacher to chronically ill person to whatever it is I am today, and how Etsy was such a HUGE part of that. Everything I have been doing in regards to crochet, magazine work, and book work stems from opening my Etsy shop when I got sick with colitis. It is very hard for me to talk/write about some of it still, and I definitely shed a lot of tears writing the answers to their questions, and then reading the 133 comments that gradually followed.
I was stunned and flattered and again honored to receive such a positive response, such encouraging feedback to my story. There were a lot of comments from people who are also battling chronic diseases, and they found the post inspirational and motivating, especially if they too were financially strapped due to an inability to work full-time, just like I was, and have turned to Etsy for its creative work-from-home possibilities. Comments like: “Telling your story is an inspiration to me and the rest of humanity” and “Best story I have read on this blog. Thank you for your courage and inspiration!” and “Estimated time it took me to smile from ear to ear while reading this: .002 seconds. :)” When I read all of these comments (and cried A LOT A LOT A LOT), I sort of pointed to myself and said, “Me?” This will forever be one of the most important pieces I’ve written, so click on the link above if you want to read it.
When I was working on the writing for the Etsy post, I had just started to recover from my 3rd and final surgery for colitis/j-pouch, which was on October 31 of last year, which also means I turned 30 in the hospital (Nov. 2). This was an “easier” surgery than the other two, but the recovery is quite different. Gone was my ostomy, as everything was reconnected during this one and I went back to “going to the bathroom the normal way,” though it’s not exactly normal as it is in a healthy person! I had been told that the first couple of weeks would feel like colitis at its worst all over again, and that I HAD to remember that this was temporary and would pass. Even knowing that, it was an extremely difficult time of running to the bathroom a lot both night and day, being on painkillers, and generally feeling hit by a truck. About a month afterwards, around Thanksgiving and the beginning of December, I began to feel the tiniest bit better. It was an amazing thing to feel like I could finally think about what I wanted to do with my life and to actually go after it!
In the 10-month span in which I had the 3 surgeries, I spent a lot of time in the hospital, in treatment centers, and in doctors’ offices. Even though a lot of it was truly horrific and unbearably painful, both physically and emotionally, I accumulated some really great times with nurses there. Nurses who not only took care of me night and day, but who talked to me about their kids, their craft projects (my craft work was everywhere in my room), books I was reading, etc. Who talked to me as a person and not just a sick ball of flesh. As I went through my day-to-day routines of vitals, blood, tests, and attempts to walk in the hallway, I got a little sense of their day-to-day. Some of them I got close to and I looked forward to seeing them, and then was a little sad when I got discharged and knew that I might not see them again. I was so incredibly impressed and amazed at what these nurses did every day they went “to work,” both the actual and emotional “work” required on a daily basis, sometimes for 12 hours straight. It all kind of made me speechless, when I would try to put myself in their shoes.
Up until the last recovery, I didn’t want to think too much about my future, because I didn’t know how it would all turn out. I didn’t want to get my hopes up about living a life I had more of a say in if it was all for naught, so I was cautiously optimistic about making plans. But what did start to build in me, at first subconsciously and eventually consciously, was a desire to be a nurse. I would think about it when in the hospital, and look into programs when not in the hospital, doing the math in regards to how long it would take me to go back to school. And I got really excited about it, to the point that I felt like it was what I HAD to do, after all these years of being sick, a sort of “calling,” even though I hate the triteness of that word.
So, in December, a day before the deadline for the next semester, I applied to a community college to start the long process of taking a ton of prerequisite science classes , which is what one does before applying to nursing schools if already in possession of a degree. And that was that: I was going to go back to school to be a nurse. A funny thing happened when I started telling people: they were a combination of surprised and kind of mad! I had mentioned it casually to a couple of people throughout 2011 and got responses of, “why would you want to give up what you’re doing now?” and “Really? But you’re such a great writer and crocheter” and a myriad of other replies that basically said I was wrong for wanting to change my life/career path so suddenly and drastically. To me it felt SO RIGHT, so I was utterly stunned to receive such feedback. And the people who tried to convince me not to be a nurse, combined with the fact that I was at that time in the really hard parts of my last recovery, sent me into a deep depression for a good week or two. I couldn’t get out of bed (well, besides all the times I had to go to the bathroom!) I was so sad that after 7 years of a disease telling me what to do and completely directing my life, now that I finally had this little glimmer of hope of a brighter future, all these people were telling me what to do and trying to direct my life.
At some point I emerged from the sadness and stopped caring what other people said because going into nursing felt like absolutely what I wanted to devote the rest of my life to. To put it simply, I want to help people the way I was helped, but there are more reasons than that. I don’t want a job where I have to tell a person what to buy, or wear, or even believe, but I do want a job where a person wants their life and health back, in small and big ways, and I want to help them get there. I want to be part of their lives when they are trying to prolong those very lives. There are times in the hospital when I wanted to stop fighting for my life and just rip out the IVs and jump out the window (they were locked, I checked), but the nurses and everyone on my medical team involved with my health never stopped fighting. They took over my life even when I didn’t want them to and they replaced my desire to live with their desire to want me to live. Sure it’s their job, but isn’t it more than a job? It has to be.
I went back to school in January and I have since completed two classes and I’m currently taking my third. A 4.0 student thus far! I had forgotten how much of a science person I was in high school, how thrilling and fascinating even my Intro to Biology class could be. Every time I left class I was thinking, “OMG this is all amazing! DNA! Transcription Factors! Cellular Respiration! OMG!” It’ll be especially interesting to go deeper into these science classes and understand what is wrong inside of me. I was feeling okay enough digestively, but by no means great at this point, and yet gradually I started feeling pretty awful. My energy was zapped, my heart was always fast and my BP low, and when February hit I couldn’t exercise at all or carry a toddler. I felt severely anemic (which of course I had experienced before with substantial gastrointestinal blood loss) but I wasn’t having any other health issues and definitely no blood loss. I got progressively worse, to the point of not being able to breathe well, having so many aches and pain, losing my hearing, sleeping badly, having muscle spasms, losing my appetite, not being able to walk, and towards the end I could feel my brain function slipping, like there were connections not being made, like I was full of woozy morphine. I wanted to get through my mid-terms in March and not miss any classes, but I knew something was horribly wrong. I made an emergency doctor’s appointment with my PCP for 24 hours later, but when I woke up the next morning, and couldn’t move well or think clearly, we went to the ER. Lo and behold, my hemoglobin was 5.8, my lowest ever, which translates to, I was missing 2/3 of my blood supply. My body was shutting down once again and I almost waited too long to do something about it.
This was one of my first health problems that was a total mystery, which was terrifying in a different way compared to my regular health problems where the terror is in sort of knowing how bad it is and how bad it’s going to get. I had two blood transfusions and a lot of tests, and I was eventually told it was a combination of “occult” blood loss (I was slowly leaking blood somewhere but they couldn’t find out where) and possibly not absorbing iron. I had no iron stores, which take 3-6 months to deplete when you aren’t absorbing enough iron in your diet. It was a tough hospitalization, coming only 4 months after my last one when I thought I’d be in the clear for a while. And I hadn’t yet “recovered” from psychological exhaustion and a somewhat broken spirit.
At the same time I was developing a desire to become a nurse, and even a little bit before that, I was becoming okay with everything that had happened to me and got to a point where I was okay with letting go. I never thought I’d get there, but after a lot of thinking and reading of religious and existential philosophy and psychology, I arrived at this zen-like state in contemplating my life. I was finally proud of what I did do, what I did accomplish, despite so many health obstacles, and not hung up on what I wasn’t able to do, and although of course I wanted many more years to live and love, I felt peaceful and not at all bitter at the thought of my life possibly being cut short by bad health. That is a calm place I never imagined arriving at without some monumental spiritual or religious transformation. Maybe it’s just a case of my mind being too tired by it all to be angry or sad anymore, almost being numb, but regardless it’s like this enormous load was lifted off my shoulders.
I had to add a hematologist to my medical team to deal with these serious blood issues, and I was put on horse pills for iron and given 2 months to get my hemoglobin up to 11, which is *only* mild anemia. I was gradually feeling better and doing well in school, and was again somewhat optimistic (cautiously!) about getting a handle on things. Towards the end of April, in my psychology class, “Human Growth and Development: The Lifespan from Birth to Death,” I was reading the chapter on “Late Adulthood” which can begin around 65 and ends at death. Robert Peck, a psychologist, theorized that the elderly must tackle “three major developmental tasks or challenges.” In less psychology-esque and more layman’s terms, these are: redefine oneself in ways that do not relate to work roles or occupations, learn to cope and move beyond physical changes and deterioration in the body, and come to grips with impending death, realizing you’ve made contributions to society and these will outlast you. When I read about these developmental challenges in the last stage of life, my jaw nearly dropped and a gigantic light bulb lit up in my head: this is why I tell people that I feel like I am 80 years old, but can’t quite articulate why I feel that way. I HAVE DONE ALL OF THOSE!!! It took years, and I didn’t even realize that I was tackling the “three major developmental tasks” of the elderly, but I was! OMG! It also explains why simultaneously I feel so excited and ready to live my life right now but also feel a strange sense of calm when I think about it ending, say, tomorrow. Ready to live, ready to die. It’s kind of an unreal state of mind.
The iron pills I was taking pretty much destroyed any gastrointestinal progress I had made, which is just par for the course with huge doses of iron pills. In the beginning, my hematologist had asked me if I could “tolerate” the 1000mg of iron a day. (You only need 18mg a day, mind you). I hesitated because this isn’t even a question in my head. I mean, didn’t I have to “tolerate” it? There weren’t exactly any other options on the table. My life seems like a never-ending series of symptoms and side effects, and as I have grown in my way of thinking about my health, the question in my mind changed from “can I tolerate this medication, this treatment, this disease, these side effects?” to “how am I going to train myself, to mentally equip myself, to increase my pain threshold, so that I can tolerate all of it every single day?” It’s GOING to affect me physically in a multitude of ways, but how can I decrease the ways that it affects me mentally? It isn’t easy by any means, but that approach makes all the difference in how I deal with such challenges. It seems like such a long time ago that I got stuck in the “this is unfair” state. Okay, maybe it’s horribly “unfair,” but now what? I cannot stay in the “this is unfair” state for longer than a moment anymore than I can enter the “I can’t tolerate” a drug or side effect. Those are such stagnant and paralyzing places to inhabit and I remember them well.
The iron pills didn’t work. My hemoglobin went up a gram, but my iron stores went down, which means that the only new blood my body actually made was because I still had transfusion iron in me from March. It’s pulling from what iron is left, but I’ll hit 0 and then my hemoglobin will also fall, i.e. I will not be able to make new blood. I knew this was a strong possibility, but I was tricked into thinking I was improving because I did feel a little better from that one additional gram of hemoglobin. A lot of iron absorption occurs at the end of the small intestine, so the doctors believe that because mine is reconfigured, it’s not absorbing iron. At all. You need iron to make blood and do a whole host of other things in the body…. Yesterday I had to have my first infusion of IV iron, which involves spending 6 hours in the hospital, but I didn’t have any adverse effects (anaphylactic shock, anyone?), so hopefully this works. Rinse and repeat…forever.