So, if you've read my Maui entries, you might remember that my asthma was bothering me before and during the trip. So naturally, I was a bit nostalgic about the medical experiences I've shared with my Mom -- making for an emotional Mother's Day post.
Well, during my first night home, I woke up at 3:30 a.m., after sleeping for five hours, with a horrible headache and nausea. I figured I was just hungry and jetlagged and after vomiting once I would feel better. WRONG!
I ended up getting worse! After going back and forth from the toilet to my bed, tossing and turning, I decided to wake my mom up so she could get an Advil for me -- they were still packed from our vacation. I could hardly bear to sit up, so I lied down while she fished out the pill bottle. Then I went to her bathroom for water and took two pills. She offered me to sleep in her bed. I gave in and walked around to the left side of her bed, crawled in and tried to get warm. I had the most horrible chill, which I thought was strange because I had woken up feeling very hot. Damn. I figured these were all symptoms of a virus, especially because my skin was sore all over, as it typically is with a virus. My mom got a pail and put it beside my bed and put a cold, wet cloth on my forehead. Then she got into her side of the bed, wrapped me in the covers and held me to warm me up, rubbing my hair and back. I felt so intensely ill that I couldn't keep still and I couldn't stop moaning. Then I cried.
I cried partly because I was so sick, but mostly because it was bringing back the trauma of being so sick last year, when I had the virus and after that. I was also really concerned that this was the beginning of a really bad patch, or the beginning of another illness. I will never get used to feeling that ill. Never. Even though it's happened so many times.
My mom and I were concerned that vomiting and headache were signaling shunt malfunction, as these are classic symptoms. This possibility seemed even more possible, as before I went to bed I had banged the top of my head -- near the shunt valve -- hard on the ceiling. I didn't have a fever and the symptoms because less intense within an hour or longer, so I became very relieved: not only did I feel better, but it seemed likely that I didn't have a nasty virus after all, and my shunt was probably fine.
Is it fine, though? In my desperation to find the root of my symptoms, I emailed the Dandy Walker Alliance (U.S.) and a Dandy Walker researcher and told them my medical history and my symptoms and asked them if they'd heard of similar cases or had ideas about what could be wrong with me. Despite being clear that my MRI scan was clear, both were concerned the shunt was somehow related to my illness, due to my symptoms. The researcher said that MRIs can miss mild hydrocephalus (my shunt works so well that MRIs reveal no hydrocephalus). A friend of mine who also has DW and hydro, said that shunts can malfunction intermittently. These are ideas to bring to my neurosurgeon next month. I feel like a detective... A detective who has very valuable sources.
The researcher also thought there was probably some connection between my medical problems. A very interesting idea. I mean, it's quite a coincidence that I have so many problems that are apparently unrelated. But how do I go about making that connection? What tests could doctors run to prove a connection? I don't even know it's worth investigating, as I have family members who share a couple of problems I have... So it seems more likely that I am just unlucky and was born with a couple of hereditary things, on top of the neurological stuff/asthma, etc. For years I figured I just had a sensitive system and was more prone to illness than most people. "Sensitive system" is no longer good enough for me. I really believe there has to be something doctors haven't found to explain why I have always gotten sick so often, many times with illnesses that aren't explainable by my conditions. Maybe there's some sort of treatment that will make me get less sick less often. Seems unlikely. Sometimes I just get really hopeful like this.Or I'll have a good day and think "This is it! My current illness is finally over, after nearly a year!" But then twenty minutes later I'll feel awful and need to sit down and laugh at myself for having such a notion. Sometimes I also imagine that one day, I won't really have any health issues and I will feel permanently good.
I know I should just accept that this is the way it is for me -- at least for now. Why do I keep getting my hopes up? I just get disappointed. I should focus my energy on finding ways of living that will suit my health situation.
The truth is that I'm still VERY disappointed that I've had to defer my second semester until the next time it is offered, next year. I see my classmates' postings on Facebook about the semester starting and I feel sort of jealous. I know this was the best decision for me because school didn't really allow me to rest -- at least for long -- and rest is what I really need. Active days of school and work only made me feel worse. Also, I hated having to miss classes or get extensions for assignments.
As nice as it was to learn new things and practice the skills I was learning, I am more disappointed that I won't get to finish my certificate this year and get a job. After pausing my life for seven months when I was sick, I was so excited at the thought of getting a job and moving out. Independence!!!! I craved it because I was sick of being lonely and bored at home most of the time. I didn't like depending on my parents to pay for things for me. My sister had moved out and had a couple of steady, well paying, grown up jobs... I wanted what she had -- being her twin, can you blame me?
Now that I'm off school and not working, I can focus on taking care of myself. I'm so relieved that I'm no longer accountable to anyone, for anything but my health and happiness. Still, as I've written here many times, I have many good days -- at least parts of good days. It will feel like a waste to be at home during those times, so I've considered getting a part-time job. But what if the work makes me feel worse? How will I handle having to go to work on days when I'm sick? These good periods are sporadic and unpredictable. I don't really know what to do.
I love animals and I'm kind of the neighborhood pet sitter, so I'm really hoping to get more jobs, now that I'll be home and can visit houses during the day. That can be my part-time job! I'm also interested in paid writing gigs, provided they don't require me to leave my house to interview people and do other research or work in an office. Call me a sell-out, but my biggest dream of all is to make a huge load of money through posting Google and Amazon ads on here. I took the Google ads off here until I can figure out how to restrict the ads to relevant, helpful ones. And I often don't know what items to post on here from Amazon, aside from the occasional book or cd. I don't have a problem with those ads, because it will help me share art I love with my readers! I have so much to share! So here goes:
This is one of my favourite novels. It particularly resonated with me because the lead character, Prince Myshkin, has epilepsy. In my Health and Society classes, or perhaps in my own readings, I learned that years ago, idiocy and epilepsy were considered synonymous. Prince Myshkin is regarded by the other characters as an idiot for his naivete. He is a beautiful, nice human being who doesn't conform to the unkind, selfish behaviours of the other characters and, seemingly, his society in general. Also, Prince Myshkin is often treated delicately because of his epilepsy. The other characters seem to tip toe around him, as if he might break. I can empathize with that.
I think it might be a good idea to write posts here about books, movies and cds I love more often. I considered doing it earlier, but I don't particularly see the point in describing or reviewing art -- which, to me, should not be used to influence the behaviours of other people. I feel that the only way to know if you will enjoy something or hate something is to check it out for yourself. After all, by describing my love for something, can I really help someone else find love for it?