Wednesday, April 29, 2009

Symptom Watch, Books, and Another Important Person

So, today was not great. I was very nauseated, very tired, had a pressure headache, and my spine felt like a shrunken accordion. It just feels like a heavy weight is sitting on top of my head, and squishing my whole spine downward. For this reason, I'm needing to wear my aspen collar anytime I am not resting. I also had hypersensitivity today, where it hurts all over my body. This includes my skin itself feeling sore and my muscles feeling bruised. So it was a no-touch day. Luckily, Provigil came to my rescue again. It does nothing for pain or nausea. But what it does is nothing short of amazing (now that my system has gotten adjusted it). My feelings of lethargy really are relieved by this medication. It usually gives me the willpower to get through another day of work, or at least existence. It's not an anti-depressant, but I do think it helps my mood, as well. So, I'd like to say that this is really GOOD news. To me, this medication means that whenever I have surgery, and however much it helps, I should never be restricted to bed full-time again (excluding post-surgery, of course). This may be a little extreme. But I'm so glad to have it in my arsenal. Nothing else has ever fought fatigue like Provigil does. And guess what? If I want a day of rest and sleep, because the pain has become to much, I just skip a dose. The doctor hasn't technically approved this, but I know that I can skip a dose for a day, and be allowed to get a good solid nap in. This gives my body time for recuperation. If I don't skip my Provigil ever, then my pain can really build up. You still need to give your body time to rest. And on daily Provigil, I can become almost manic, and find it impossible to rest.

Besides this, I finished reading my book today (The Invisible Man, by Ralph Ellison). I've decided that it truly is a literary masterpiece, even if the style isn't what I'm used to reading. So, I'm glad that I read it. Ever since my first surgery, I find concentration to be a challenge, and my speed of thinking seems to be slower. That makes reading a more difficult task than it used to be. It takes me much longer to finish a book than I ever expect it to. I used to race through books so quickly. This could be neurological, but it is probably also related to the constant pain I live in. Nonetheless, I can't stop reading. As long as my eyes don't hurt too badly, I always read before bed (which isn't always a great idea when you're on fall asleep with the flashlight on and lose your place).

So, I started a new book right away. For a big change of pace, I picked The Last Lecture, by Randy Pausch. I'm sure I'll get through this one quickly (for me). It's already really got me thinking...not necessarily about the essential content of the lecture (living out childhood dreams), but about how unimaginable it would be to me to lose my chosen life partner. I've been in love before, but this is the first time that I truly have my expectations for my future in place. The thought of a terminal illness afflicting my Gustavo, or any one of my other loved ones, is truly terrifying. Of course, chances are, this won't happen. But I want to make sure that everyone in my life knows how much they mean to me. I don't want to regret not expressing something that I feel. This is a huge undertaking, but I'm going to do my best.

Since I've already started, I'm going to try to explain just how important Gustavo is in my life. If you can't handle sappy, feel free to ignore the rest of this post (and no, you are not excused, Gus). Gus and I met during our senior year of high school. I really hated high school...and not just a little. Not the way a normal person hates school. By my senior year, I was bursting out into tears during class many times a day, due to the depth of my depression. It's important to note that my depression was mostly well-controlled by this point in time, outside of school. But being in that building, with my classmates and teachers, I would often have a panic attack, burst into tears, hyperventilate, and be sent to the nurse's office. If I couldn't get my crying under control, I would end up leaving school for the day, and feel that one day's burden had been lifted. I did become suicidal and resorted to cutting at this point in time, since I was so bad at coping with my pain. Moving on. I met Gus senior year. And for our last semester, I joined his group of "nerdy" friends for lunch every day. I was so glad to have a group of people that didn't reject me. I didn't really fit in, but it didn't matter. Anyway, I also began to stay with Gus during his study hall. That was a big deal, considering that I was allowed to leave school before eighth period, but he had an in-school study hall eighth period. And I often chose to hang out with Gus rather than leave the horrid institution early. We bonded closely. I could tell him everything, right from the start. I trusted him innately, and I craved our time together. Nonetheless, for a variety of reasons, we remained "just friends" for several years. We stayed in contact throughout college, and visited each other occasionally.

It was during Gus' senior year of college (which was my junior year, due to one year lost for surgery) that we began to spend more time together. I had been through several relationships during college, and his college relationship had come to an end. I began to spend every weekend with Gus. We were still "just friends", but our bond was becoming much closer. In April of that year (2006), we finally made the leap from friends to a couple. I continued to spend every weekend with him at Northwestern through the end of the school year. Unfortunately for me, Gus was accepted into the "Teach For America" program, and was placed in Philadelphia. So, after dating for just under two months, he moved away. I flew to Philadelphia eight times during that school year. Gus was so overworked that he was barely sleeping. He was also somewhat depressed at the time, although he may not admit that now. This was quite a strain on our relationship. We would have a wonderful weekend together each month, and we would talk before bed every night. But I no longer had someone who was available to listen to all of my stories. I felt alone so much of the time. Gus' year in Philadelphia was followed by a challenging summer, when he moved back home. Due to Gus' fervent belief in our relationship, we made it through, and our bond strengthened again.

The next year of our relationship wasn't easy. We were living in the same state again, but Gus was back to living with his parents, after five years of independence. And of course, I was living at home, having graduated from college in spring 2007, but not able to move out of my parents' house. This year was difficult for us in several ways. First, my parents were going through a divorce. My house was miserable that year. And Gus' parents' house didn't provide much of an escape. I was really happy that Gus was home with me, and felt happier than ever to be with him. But Gus was stuck working at Starbucks for the year, while he applied for graduate schools. This year, even he will admit, he was definitely depressed (I know: mildly). I think I was able to help make the year more bearable for him, and he certainly helped me to handle my parents' divorce. I actually consider this year to be a wonderful year for us as a couple, since we got to spend almost every day together!

The next summer was a time of change. First, I had surgery to remove my gallbladder. Then, Gus had a long-awaited surgery to repair his torn ACL. This was followed by my trip to New York for tethered cord surgery on my lumbar spine. We supported each other as much as possible in our respective recoveries. Even though Gus was still in the early stages of his recovery, he accompanied me to New York. He was at my side before surgery, and every day following. This is when I learned that I could no longer become embarrassed in front of Gus. He stayed by my side through every painful and difficult part of the recovery process.

At the end of the summer (2008), Gus started graduate school at the University of Wisconsin: Milwaukee, working endlessly for his Ph.D. in clinical psychology. To shorten each of our commutes, we found an apartment between Milwaukee and Chicago. At this same time, my parents' divorce became final, and my mom moved into a condo. I wasn't sure how much time I would spend in each place, but I knew it would be a part-time living situation, with neither place really being my "home". Nonetheless, I am lucky enough to be able to stay with my mom during the weeks, while Gus is working obscenely long hours. And I get to stay with Gus on the weekends. What's amazing it how understanding Gus is every single weekend. At least one of our two weekend days, I am always restricted to bed. While I could be helping him around the house and making meals, he is usually the one helping me. I often feel guilty that I am always the one that needs caretaking. But he doesn't seem to mind. We both get frustrated with my illness. But he never seems to resent me for it. This may not be an ideal living situation, but I like to think that we make it work. This is the current situation, but everything is ready to change again, with more surgery somewhere in the future, and with Gus moving up to Milwaukee to allow him to get more than four hours' sleep in between his workdays.

Gustavo is probably the most hard-working, determined, and intelligent person I have ever met. I may call him a work-a-holic, often, but I truly admire his tenacity. I believe that he will accomplish everything he sets out to accomplish, and more. But of course, while I admire him so much for that, I love him for so many more reasons. I trust him so easily, in every sense. I know that in any situation, he will be on my side. I know that whatever struggles come up, he will encourage me the whole way. He is a wonderful shoulder to cry on and my favorite person to hug. He also believes in me so strongly. He thinks way too highly of me, and tells me that I am the strongest person he knows...even though he sees me in so many moments of pure weakness. He makes me feel better about myself by validating my feelings and my pain.

Another thing that I love is how similarly we think. We do not have the same taste in music, movies, television, food, or almost anything else. But I can talk to this man about everything. Our conversations are so easy, because we are often on the same mental track. Given our very different cultural backgrounds, I am sometimes surprised at how similar we've turned out to be.

And of course, I picture my future with Gustavo. This includes deeply wanting to have a family with him, although it may not work out the way we've always expected. Nontheless, family is so important to both of us. So, we both plan on finding a way to have a family together. I picture this future with no one else. And I cannot imagine how I would live a future without him in it.

We have been together for three years now, although it seems longer, considering the massive life changes we've been through together, and the many stages of our relationship. Also, we've been in each other's lives for seven and a half years, which certainly adds to that feeling. And just in case you were wondering, no, we are NOT engaged at this time! But we do have similar expectations for the future, so I try not to dwell on that fact, as we still have a few things to get through, including my next surgery.

I'm sorry if this was too sappy for anyone. Maybe, these words should remain between just the two of us, or be saved for some important occasion (hmmm...what could she be talking about?). But, as I mentioned earlier in the post, I feel a strong need to make sure that everyone in my life knows how important they are to me. And I think it's good for other people to hear about this key person in my life. He's an important part of who I am, an essential part of my life.

This is still just the beginning, since I do have so many people that mean so much to me.

If you actually read all of this, thanks! I understand that some people just want to hear about medical news and information, but I have other things inside of me that need to be said. I hope this isn't the inappropriate outlet for this purpose. I think that the loved ones in my life are more important than my illness, even though my illness invades almost every moment of my life.