Thursday, May 13, 2010

Nocturnal Sickie One

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?


  1. I am struck by how loving and caring your mom is:
    "She wrapped me in the covers and held me to warm me up, rubbing my hair and back."

    I am so glad that during your suffering you have such a loving mom to take care of you. Many people do not have parents that special.

  2. That sounds really horrible. I can't imagine having to deal with something like that. I will keep you in my prayers.

    I love The Idiot. Dostoevsky is one of my favorites. Ever read White Nights? Such a beautiful story.

  3. Ashley,
    Writing your thoughts about books, movies or any product is a fine idea. Yes you can ("can I really help someone else find love for it?"). Often I am reading Blogs or article and someone just mentions a book or movie and it can sometimes prompt me to read it. I then sometimes end up reading many other things by that author if I liked it. There are so many books and movies out there it is hard to pick – so if someone whose opinion I respect recommends something, I often check it out.

    I can think of a perfect example that happened about 6 months ago. I was reading an old interview with actress AnnaSophia Robb (i.e. Bridge To Terabithia, Witch Mountain…) I stumbled across. At the time of the interview AnnaSophia was about 12 years old. The interviewer asked her what books she likes…Without any hesitation she said BLOODY JACK and SUMMER OF KINGS were her two favorite books. I never heard of either one of them. But having an 11 year old daughter who is a voracious reader (and me always looking for something high quality for her to read) I immediately bought them and read them myself. Both of them were very different than what Nicole had been reading (Harry P, Twilight..) and I thought they were great. Nicole read them both and then read all the other books in the BLOODY JACK series. The point I want to make is the she would never have found these books at school or from her friends (both deal with coming of age issues and sex issues, KINGS in a romantic way and JACK in a pirate way – death, rape and prostitution, gays, etc. - Not the kind of books you find in public schools).

    It is so important that we read books, movies, etc. that are a bit out of our comfort zone. If we only read and see things that are already part of our own little world we close ourselves off. Getting ideas about books or movies from someone I don’t really know but do respect (like you) is an easy way to open my world up a bit. So please do write about books, movies, whatever is on your mind.

    BTW: I wouldn’t get your hopes up to high on getting big commissions from Amazon. The amount of traffic volume you need to make money that way is enormous. But take a shot.


  4. I think you need a CT and if it were me and I had I had a headache and was throwing up, I'd be at the ER right now. Just sayin'.

    Also, do you have a GoodReads account? It's kind of fun. Let's you see what your friends are reading. Here's my profile:

  5. Lordy, I typed before thinking AGAIN. Here's what I should have said instead of being so pushy in my previous comment:

    Ashley, I am really concerned that you are showing signs of shunt malfunction. I am not sure that you should wait another month to get a CT and check the amount of pressure on your brain. Can you talk to your regular doctor about this? Or even go to the ER? That's what a jerky neurologist who didn't want to take my case told me to do last week if I thought I was having increased headaches from the hydro/DW: go to the ER. I'm really worried about you. Please don't mess around with this. It's super easy to get a CT (only takes a couple minutes nowadays). If I were this sick with these symptoms, honest to God, I would be begging for a CT. I'm not trying to be pushy or saying a CT is the right test for you but please don't wait a month to seek medical attention.

    I wish I could be there to tell you this in person. Maybe it wouldn't sound so pushy then but I don't want you tone any sicker than you have to be. Also, I wish I could give you a hug! It's going to be okay, sweetie - you're tough and you'll make it through this.

  6. Joe -- My mom is amazing. She does so much for me and I can't imagine not having her through these hard times. It boggles my mind that other people struggle without the support of a mom like mine -- or without anyone.

    TS -- Thanks for your sympathy. You are very kind!! I've never even heard of White Nights, but now I will certainly look into it! Thanks for the suggestion. Now that I'm home full time I should read more.

    Robin -- I'm glad you are so open minded about books! Yes, I think it is good to read of variety things, particularly things that are unfamiliar. It's a good exercise for the mind, I think. Your bit about Amazon made me laugh... Yeah, I figured making money this way was a bit of a pipe dream.

    Danine -- thanks for your support! The headache and vomiting eased on their own. If they were still going on, I would definitely go to the E.R.! I figure if I really was in a bad way, these symptoms would be continuing. I really appreciate your concern. I probably need a wake up call like yours every now and then because I tend to feel kind of invincible. I'm actually not getting a scan for my next appointment because I just had an MRI in late December.

  7. Crap I somehow deleted your blog when I was going through them. I'm following again lol. :)

    Thanks for the compliment on my writing. I really worry that it's hard to understand and disorganized sometimes lol. Maybe that's just my thoughts haha.

    I didn't know you are a twin. I am too!!! And I know how you feel. My sister seems to have things so together and figured out most of the time (as far as I know from what my dad tells me - she won't speak to me for reasons unknown to me) and I feel like I can hardly make it sometimes.

    I'm with you on having mysterious, unexplained health problems, although mine are no where near as severe as your's. I really feel for you having to deal with all that crap. Keep searching for the answer and don't give up hope. I'm sure you'll eventually figure it out.

  8. Thanks Achieve! Welcome back!!! I'm glad to have found a twin who identifies with what I wrote about! Tell me: were you second born too? Hahaha

    Any health problems are worth writing about if they affect your life -- clearly yours do, so please feel free to share! What have you been suffering from? How have you and your doctors tried to figure it out? Have they been helpful and sympathetic?

  9. Describing things that you enjoy helps other people to find out who YOU are, so yes write your thoughts about songs, art, music..anything!

    Best wishes and thank you for following my blog. Blu in France

  10. LOL My mom had a Cesarean so I'm not sure who would have been born first. I was pulled out first because the time on my birth certificate is one minute before my sisters.

    I'm not sure what all of my health problems are because I'm terrified of doctors and it takes me a long time to get the guts up to go. It took me years to finally have my thyroid checked (afraid of needles). I feel much better and don't sleep as much since I got treated for low thyroid, but I still am having issues with my diet and pain in my right side near my last ribs. My doctor thinks the pain is from gas caused by a dairy allergy, but I don't know for sure. I'm still getting up the courage to have allergy testing done. :)

    Thanks for your interest and I may go into it a little on my blog, but it's just not something I'm comfortable talking about usually. The things I mentioned here are only some of them and don't even touch on my emotional or hormonal problems. :) Baby steps.

  11. My mom had a cesarean too because they "were losing" me... But my sister was in the way so they took her out first. Hahaha.

    Thanks for sharing your story... Medical experiences can be intimidating. Maybe your terror of doctors is something you should explore on your blog?? I'm sure there are others who feel similarly and can offer you support... And of course you have my support too!

    I hope you get help for your problems... Low thyroid seems like a royal pain. Your other issues do too.