April 2009 archive

OH Canada!

It has been a long and painful two days. I’m so very tired in my bones. I feel I could sleep for a millennium if only they gave a bit more sleep meds haa!

We started our journey around lunch time (or breakfast for me!) and drove up the map (so north right?) to Hyde Park, New York for about 2 hours or so to see my Lyme doctor, Dr. Horowitz…well actually we saw his PA I think. He was nice,  but we had to wait an hour to see him…which was totally not cool. We also had a 3.3 hour drive ahead of us, so we were eager to get going so we could arrive in Syracuse, New York before nightfall. We just ‘reviewed’ me and ‘reassessed’ my symptoms and drugs ect. Fun fun fun I know! It was suggested that I inject myself with a needled in the leg and shoot myself full of B12, which sounds like almost too much fun to handle. So much fun in fact that I may be willing to put off the surprise so that it will be even more exciting later! Joy of all joys.
We had Thai food (oh my fav of course!) for lunch, in the same city where Vassar is! It was delicious and nutritious.
Thennnnnn we hopped back in the car and proceeded on to our hotel in Syracuse, New York. I tried plugging the address of the hotel into our GPS, and (just my luck), it was not in there. We had some Google Map instructions to go by, and task of ‘navigatrice‘ fell to me. I’d like to stress the fact that I’m on enough meds that even the smallest tasks (brushing my teeth, telling a joke, spreading butter on toast ect) are quite the challenge, and if I have to talk or focus for an extended period of time, I completely lose focus and fly off to La-La Land (oh yes I’ve been there aaannnnd its a real place. If you’re on enough drugs :D) and if I manage to be yanked back to Earth, I forget where I was or what I was doing. So you can only imagine the fun I was having trying to remember to read a map and not think about such things as ‘OMG that grass is such a nice Paradaish green’ and ‘oh another sign! oh this is just too cool! if i were playing bingo I’d have a bingo already!’ or singing ‘we’re going to the circus, the circus, the circus. We’re going to the circus a happy we will go’ or songs like ‘Mambo Gelato‘, a personal favorite get-stuck-in-your-head-fast song. There were ALOT of turns to remember to make. Or to talk about making actually. Needless to say, I had to sing Mambo Gelato quietly, and only on the 129 mile stretches (oh yes there were!). 
I think Google Maps might need a new robot who has a bit more skill and basic knowledge than the one they are currently using, because Google took on a wild goose chase through the country side, and even though it couldn’t have been more than like 20-25 miles, it took well over an hour, perhaps more. I know…crazy. We reached the freeway as it was getting dark which is absolutely perfect for navigating of course. I think I did a stellar job, all in all, especially if you saw how many patches of grass, pieces of litter and road signs tried to distract me. 
We stayed overnight in a Candlewood Suites (who? yah, never heard of them either) which turned out to be like a really nice hotel (and not like crazy costly like a Hilton or something). They had nice smelling soap, which is such a bonus, because I don’t appreciate smelling like a HoJo Creamsicle after a shower…gross. The towels were ridiculously soft. And the bed was pillow-top. I had the best sleep I’ve had in years. But it also could have been the fact that we arrived at the hotel at about 12 o’clock in the AM, and I’d been up and going since 12 PM and working hard navigating and answering doctors questions. And so ends day one.
On the second day, I rode with Phil (that’s my uncle!) the rest of the way. Its about a 4 hour drive, which passed quickly with lots of music and breaks. My aunt and uncle helped us pack up all our stuff and take it to their cottage, which is where I am now! We arrived late yesterday. I’m sitting on their screened in deck (the joys of mosquitoes I must discover later for myself) with the lake just a few hundred feet away. Its so serene! I’m so happy that they are letting me stay in such a beautiful place! Its so nice to be with family, especially family as wonderful as they are! Thank you guys so much! 

These Are the Days

It is just gorgeous out there today, but not as nice as yesterday, when it was about 83 F (or 29 C). It about 10 degrees F cooler today but still not bad! So nice that the weather finally decided to get nice, just when we’re leaving town.

And we’re leaving tomorrow. 
Went to Dr. Jones’ office to say goodbye to everyone there, and went to Costco for some list of drugs I’ve been on (oh its a long list!). Said goodbye to the people at Trader Joes too. I can say this for Connecticut-ians (what do you call someone from CT?), they are sure friendly and nice. And generally crazy drivers :P. It’s not the worstest place to be stranded, I mean at least its on the ocean, and we’re not in some flat, boring place like Nevada (no offense to people who live there, but it is a little dull, dontcha think? at least they’re legal prostitution and gambling right?).
I feel like a slug is in my brain slurp-slurp-slurping away at my thoughts. I bet all this text will be just random letters and gibberish. Sometimes it surprises me its not! And incidentally I cant believe that there is a word (and a very cool one at that) for nonsense, but at least ‘gibberish’ is a pretty sweet and made-up sounding word.

Talking

I went and talked to the drama people at Amity high school (Devon, did a Matchbox20 dude go there?). It went well, but it was super early in the morning, so I was still really tired and my brain was moving in negative time. I told them about home, and being sick, and why having Lyme disease in this era is so terrible (because of all the misinformation and stupid doctors who aren’t willing to change and such) and mom talked as well (because I honestly know next to nothing about Lyme, because I had no time to learn about it because of the memory loss!). They asked alot of really good questioned and seemed real surprised that Lyme could do this. Only one of the people had had Lyme, but everyone knew someone who has had it. I was shocked. In Victoria, my doctors (even the highly trained specialists) hardly knew what Lyme disease was, let alone all its complications, or someone who even HAD it. But here were these 17 year old kids who knew more than my family doc and Children’s Hospital neurologists. That. Is. Scary.

 I really wanted to talk about what it was like having no memory and how long I’ve been forgetting for and my last memories, but I kinda punked out. I’ve never really felt embarrassed about talking about me being sick, in fact its always felt more like talking about someone ELSE, rather than me, because I have no…personal memories of it really. It kind of hit me that I actually haven’t remembered thing for like…9 months and suddenly that seemed like a very long time. Like an era. Like a whole lifetime. And in a way it is. Its a lifetime that I’ll never get to live again. Its my life but it will never really be my life, in the way I remember the rest of my world. Does that make sense at all? Or is this just the drugs ranting?
This part of me shall never truly be mine: it won’t be until I can remember these times.  

Confusion

Today was okay I guess. I’m feeling super weird, like majorly high, only I’m not (just to clarify). Everything is absurdly funny in a really creepy way and it seems to take an age for thoughts to reach me. its like I’m in this tunnel at the far end and the rest of the world is at the other, and the words all get jumbled up on their flight to me. 

I have 3 fish, I don’t know if I mentioned them or not, but there sitting up next to me so I thought they should be mentioned. I think I’ve had them for awhile, a few months at the least. Their names are Oscar (de la Renta), Versace, and Yves, after some of my favorite designers…I must have been feeling imaginative lol! 
We went to Costco on a drug run (woo!) and Trader Joe’s (or as it says on their ‘Italian Pasta Sauce’ label : Trader Giotti’s) and got some essential yummies. The people who work there have been really nice, and it was nice to say goodbye. One of the men gave me a bouquet of flowers: bright orange gerber daisy (my grandpa fav!), classic iris, and a yellow lilly. A collection of the prettiest flowers!
I’m going to Amity high school tomorrow (aparently.) to talk to some people about Lyme which should be fun and scary. Not sure which more. 

Summer In Spring!

Today was such a gorgeous day. I am not joking when I say that it was 83 degrees F (or 28 degrees C). Isn’t that ridiculous!? Even now, at like almost 9 o’clock, I’d say its in the low seventies! OMG! I’m in heaven. And a short sleeve shirt, which is like a rare occasion for me! 

We went to Whole Foods today which was super-dee-duper fun obviously! We bought scallops and had them for dinner! Yum! I wonder why scallops are always de-shelled, versus like a clam or oyster ‘in the shell’? I could google it but that would take the mystery out the ‘mysterious’ de-shelled scallops, which would practically be a crime!

Nothing To Report

Well this week has been okay. I feel extra specially bad for no good reason, which is always a treat. 

Saw an endocrinologist. Hopefully if I see him enough I may be able to pronounce his name. Apparently my thyroid meds are a good choice and  he sent me for some ‘gasp’ blood work, which I have yet to do. Yeah. Blah blah blah. He was real nice though! Thats always welcome! And the best part of endocrinology is that its mostly questions and blood work! No painful prodding necessary- a bonus! 
We had Thai appetizers after (my fav!). Satay, and spring rolls and curry puffs!
I did my own dressing change today! It looks very neat and tidy and no ickyness ie) blood, puss, infection, blood (did I mention that?). It kinda hurts though. In my chest is where I feel it. Its kinda like there’s a little stone in my chest and its poking me from inside. Its not comfy. I’m so tired I think I’m falling asleep as we speak. 
I think it is also time to publicly (oh isn’t that official) announce that I am moving to Ontario at the end of this month. I’m going to stay with my aunt in uncle (oh…and big cuz, I forgot! Love you!) a few hours outside of Toronto. They live on this gorgeous lake so I’m totally stoked. I just wish it was home! But its a start I guess!

All in a Days Work

The last few days have been kinda crazy, and I’ve been in alot of pain (nothing new). Nancy and Phil are visiting from Ontario which is totally awesome! We’re going to play Password (that old game!) in a bit!

The second night of “Rent” was, if possible, even better than the first! It was really ’emotionally charged’ because it was their last night and all. I totally loved it!! One of the cast members gave me a picture of the whole “Rent” cast annnnnddd it was signed (OMG!!) by all of the cast! It is so amazing!! In a few years, I can say ‘Oh I have so-and-so’s autograph from when they were in high school’ and it will be worth so much! And that’ll probably prove true! They are so unbelievably talented! Sigh, I wish I could see “Rent” again.
Went to a screening of ‘Under Our Skin’ at Quinnipiac University (wow! what a name hunh? I think it’s native probably!), which is about 10 minutes away from here. The movie is all about Lyme Disease and I would totally encourage all of you to see it, not just because its about Lyme and if you don’t know about it, it may come back and bite you (no pun intended!), but also it is a fantastically done film! It follows a number of people battling Lyme, and covers the controversy and new research, as well as other aspects of the topic. The girl who put on the showing, Monica also has Lyme disease and was super nice! She has a PICC line too, incidentally! She’s really interesting and really knows her facts! Quite impressive!
Today was okay. Went to the library for a bit and then came home. Basically. Its kinda dismal out there, all rainy and  cloudy and dark! Ah well. The sun will come out tomorrow right? HA!

Measure Your Life in Love

Last night was probably like the coolest and best night/day of this whole year. And I totally wish I was exaggerating because that would mean the last year has been uberly lame-o (HA), but I am totally not.

Amity High School put on the play “Rent”, which as those who have seen it know,  is the best and most epic play ever written! And for those who don’t here is a quick summary:
1. It’s an update of (perhaps the 4th best musical ever and best opera ever written) ‘La Boheme‘.
2. It’s about a group of friends living in New York City. Some of them live in this kind of warehouse/apartment building and through really weird circumstances all meet and become friends (basically…). They battle AIDS, paying the rent, and learning that their lease on life may not be as long as they believe.  As these elements test the characters such as betraying friends, protests, questions of faithfulness, drug abuse, and time try to tear them apart (oh this is sounding so melodramatic!). 
3. It is a musical, and the music is so epic.
4. I just cannot describe how epic it is. The music will make you laugh and cry. I can’t really describe the plot because it is so…EVERYTHING, that it’s pretty hard to describe. Basically, rent ‘Rent’ and you won’t regret it. And this whole numbering system isn’t working out too good for me. 
Anyway, these kids at the high school put on “Rent”, which is basically taking on the mother tiger of all musicals, and I just don’t have words to describe how infinitely awesome it was. They had this energy and chemistry that was absolutely phenomenal, and they were totally believable. You forgot that these were sophomores, juniors, senior. You forgot that Mimi didn’t really have AIDS, that Angel wasn’t really dying, and that they weren’t all in New York City, Bohemian-ing it up. It just blew my mind how fricken awesome they were! I can’t even put into words that kind of energy, only that I’ve seen a lot of plays and this one tops them all! OH! Annnnddd on top of all that, they had such INCREDIBLE voices, equally as good as the original Rent-ers! Aww soooo good!
After the show, I got to MEET THE CAST! I mean OMG right?? And they were the coolest people ever,  so friendly and genuine. They told me that they were singing for me (OMG), and I ‘inspired’ them, which obviously shocked the hell out of me, and humbled me greatly! I mean THESE kids were MY inspiration! I was totally honored to meet them…it was just incredible, their kindness and energy. It was totally unbelievable. I was so happy afterwards, even though I was so tired and hurt so much from clapping (I know, LAME!). I was happier than I have been in a year, probably more. 
And the BESSSTTEST part is…I GET TO GO AGAIN TONIGHT! I know right, you all are so jealous! 
If anyone from Amity High ‘Rent’ cast reads this, please know that you’ve shook up my world, and given me new reasons to push forward and get better! Your passion and talent is most righteous. Thank you for rocking out! Peace it!

A Wicked Essay By a Wicked Righteous Cousin

My little/old cousin Amy (daughter of the aforementioned and most awesome Nancy and Phil, who herald from Ontario!),  is a seriously chill 22-year-old, currently getting more knowledge at college, and wrote this killer essay for English. I think she summed up the argument about Lyme disease in a articulate, organized way that I am very jealous of! And without further ado, enjoy!!

Imagine you are a 16-year-old girl confined to a wheelchair without any short-term memory. Now imagine that you are 3000 miles away from your family, your friends, and your home. You are also in a foreign country. Imagine that all of these unpleasant factors are because you are afflicted with a misunderstood and controversial disease. This is not an uncommon story of a patient with Lyme disease from Canada. Lyme disease is “an acute inflammatory disease that is caused by a [bacteria] transmitted by ticks- called also Lyme.” (Merriam-Webster Online Dictionary, 2009) Canadians should become more aware of Lyme disease because Lyme is an epidemic, preventative measures can be taken, and Lyme is consistently misdiagnosed as other diseases. Aldous Huxley once said, “There are things known and there are things unknown, and in between, there are doors of perception.” (Weintraub, 2008, 24) With the debate about Lyme raging in Canada, it is important to note what is known and what is unknown about this devastating disease, and perhaps more importantly, what is being perceived by the public and by the medical community.
The number of new diagnosed cases of Lyme disease outnumbers the new cases of AIDS. (Buchanon, 2009) This is a staggering statistic considering the attention and concern devoted to the AIDS epidemic. Citizens of Canada should also be very concerned about the fact that Lyme disease, which is seemingly unknown, is also an epidemic.
Doctors and labs report more than 23 000 cases falling within the Center for Disease Control’s circumscribed definition for Lyme disease each year- a number the CDC estimates is 10 percent of the total such cases in the United States. At more than 200 000 new cases a year, Lyme [has] become one of the fastest spreading infectious diseases in the United States. But how many… patients fell outside the umbrella? (Weintraub, 2008)
The numbers of cases of Lyme within the United States, our neighbouring country to the south, are enough to suggest a serious problem. It is also important to note that Canada uses the United States’ Center for Disease Control’s guidelines. When Lyme was first acknowledged in the 1970s, it made its appearances in what were called “Lymezones” across the continent. Soon, however, there were “…doctors who saw Lyme [disease] everywhere…” (Weintraub. 2008) The disease does not discriminate as to where it travels. Wherever there are possible carriers of the bacteria-infected ticks, such as deer or mice, there is a possibility of contracting the disease. Perhaps the most pertinent reason Canadians should become more aware that Lyme disease is an epidemic is that the number of cases of the disease are expected to increase over time. Dr. Kevin Forward of Capital Health in Halifax stated that, “[Capital Health] expect[s] as our climate continues to warm and other factors come into play, we’re going to have an extension of the Lyme problem.” (CBC, 2006) If Dr. Forward is correct, and Lyme disease does become more prevalent, Canadians should start to inform themselves of ways in which to stop the spread of this disease.
Going for a walk in bear country is a dangerous activity. There is an obvious and serious threat to your life if you do not take the proper precautions such as carrying a noisemaker and not walking alone. (Dieno, 2009) Going for a walk where there is a possibility ticks are present is an equally dangerous and life-threatening activity. Being aware of the many simple preventative measures one can take in order to be protected against ticks is an effective way to help stop the spread of Lyme disease. Simply covering arms and legs while walking through the woods or areas with grass is a way to keep ticks far enough away from skin so that the ticks cannot bite. Using an insect repellent which contains DEET on whatever skin is left exposed, and also on clothing is a further deterrent to ticks. When returning home, after being exposed to areas that ticks may inhabit, it is important to thoroughly check the bodies of pets and people who have been in these areas. (CBC, 2006) Removing the ticks before they bite could save your health. It is important to be knowledgeable of these defensive measures because, unlike a bear, a tick is a physically tiny threat, but just as deadly.
Many illnesses are perceptible. Their symptoms are clear and treatment is definite. Symptoms of strep throat include a fever and swollen tonsils. (The Nemours Foundation, 2009) Physicians, when presented with these symptoms, can offer a treatment plan based on them, and their previous knowledge of the infection. Lyme, however, is constantly misdiagnosed as many other diseases. The reason this misdiagnosis occurs is because Lyme symptoms are indistinguishable from those of other known diseases. Lyme is alleged to be misdiagnosed as Alzheimer’s disease. A symptom of Lyme is memory loss. (CanLyme, 2009) Dr. Alan MacDonald, a pathologist from New York, is currently researching what he calls “a new biology for Lyme disease” in which he is using “DNA probes to detect [bacteria] DNA… in tissue sections from Alzheimer autopsy tissues.” (MacDonald, 2006) Dr. MacDonald believes that “some Alzheimer’s might be… a late manifestation of the bacterial infection in the brain [caused by Lyme.” (MacDonald, 2006) Lyme disease is also often misdiagnosed as chronic fatigue syndrome. Chronic fatigue syndrome is a “severe, incapacitating fatigue that isn’t improved by bed rest…” (CDC, 2006) Nicole Bottles, a young patient with Lyme, was first diagnosed with chronic fatigue syndrome. She describes that the way she feels is very similar to that of a patient of chronic fatigue syndrome. She says,
I’m now like in a permanent in between-sleep-and-awake state. I can’t wake up in the morning… But it doesn’t feel so cut and dry anymore. Being asleep. Being awake. Dreaming. I think that I’ve hit on the other stage of ‘wakefulness’. It’s waking up and still being asleep, like that feeling of being trapped in a nightmare and not being able to wake up, [except] it’s the opposite. (Bottles, 2009)
A third disease Canadians should be aware of, which might be Lyme but is commonly misdiagnosed, is autism. “Late in the progression of [Lyme] disease, neurological, cognitive, and psychiatric symptoms predominate; overlapping symptoms of autism such as food avoidance, facial recognition problems, sleep disorders…” (CanLyme, 2009) The one common thread that leads to the proper diagnosis of Lyme is that most patients have a number of their systems affected, such as their brain, their central nervous system, and many more. If left untreated or treated insufficiently, Lyme symptoms will continue to persist over a person’s lifetime. “Lyme diagnosis is never ‘black and white’ but rather, ‘shades of grey’.” (Weintraub, 2008) Canadians must be sure that they are knowledgeable of how commonly Lyme is misdiagnosed and the diseases it is often diagnosed as instead.
If Lyme disease is an epidemic, if there are simple ways in which to prevent the disease, and if Lyme is misdiagnosed so often, hiding, as other diseases, who is responsible for the treatment, prevention, and diagnosis? The biggest barrier in the debate about Lyme is the Center for Disease Control’s guidelines for the treatment of Lyme. These guidelines are not broad enough to cover the wide range of symptoms and co-infections caused by the disease. Doctors who defer from these guidelines in order to treat patients with Lyme are often persecuted and have had even had their licenses taken away because of their “heretical” and differing views. (Weintraub, 2008) In 2006, the Public Health Agency acknowledged that Lyme was a bigger problem than they had originally thought. They claimed that they “[were] reworking [their] guidelines on the diagnosis and treatment of Lyme disease”, yet nothing seems to have changed in the last 3 years. (CBC, 2006) Pamela Weintraub says, “Perhaps we enjoy living recklessly. Perhaps we feel invulnerable and thus immune to dangers and risks. We don’t like to ponder bad news before it happens. (Weintraub, 2008, 353) Now is the time to ponder and to become aware of the dangers of Lyme and the misconceptions about Lyme in order to take control of the disease. “The great tragedy of science is the slaying of a beautiful hypothesis with an ugly fact.” (Weintraub, 2008, 340) The fact is that Lyme is, and will become even more of a crisis in Canada. Exposing the truths about Lyme disease is the preeminent way to fight back against this debilitating disease.

Mo’ Drugs

I feel VERY strange today. I haven’t actually given that much thought to the feeling, but I suppose it feels like somebody pumped a whole shitload of drugs into me and then spun me around ten times like they do at birthday parties before a pinata  and then asked me a bunch of really brain-hurting questions. 

I changed my own dressing today again. And I’m quite proud of myself actually! Its really hard to do one handed- I can attest to that. I feel strongly about doing the things that are remotely possible to do alone, alone. I apparently all the time say ‘I can do it myself’ which, annoys some people *cough* *mama* *cough*, but you couldn’t understand the crazy need to do some things for myself, until you cannot walk. 
I started on another antibiotic  drug a few days ago called ‘Doxycycline’ or something that sounds an awful lot like that. It is working, no let me rephrase that, its getting where it needs to get because I feel so UBERLY shitty that it only means that I could have pissed off the Lyme bugs, which hurts now alot! Short term loss, long term gain don’t they say? It makes me feel like somebody put a few weights on top of my head (I should add that to my list of metaphors for how I feel today – please see above)
I feel like I’m getting sick, which is quite ironic cause usually all the times I say that nowadays I mean like I’m getting sick-er, from the Lyme. In this case, I actually mean I feel like I’m getting a cold. I forgot what it feels like to get cold-like-sick. It seems laughable that I used to complain about getting a cold. I still hate colds. They are annoying in the way that Lyme hurts.
We went out for Thai food tonight, which is obviously like the BEST kind of food ever. Especially curries! I love curry! It’s like the only thing I can taste. And spicy food is supposed to be good for pain. Thats what they say! 
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