Archive of ‘pain’ category

Mad Hatter

Yes! I have just completed my first hat. It wasn’t any where near as hard as gloves, but the challenge this time was running out of wool at the top (whoops…miss judged that one). Luckily, blue is a pretty common color in my yarn scraps bin, so i found a suitable substitute. A perfect miss-matched end, which I actually quite like. Its funny how accidents sometimes work out just so well. I just have to tuck in the ends now, my least favorite job.

Improved tippy-top

A perfect fit

I based my hat off of my favorite number *geek alert*, which is Phi (.618), part of a mathematical proportion that occurs alarmingly often in nature (snail shells, human dimensions, leaf vein patterns). Each row of my hat is .618 times smaller than the last. I ran out of room at the top, and just started the pattern again (sort of…running out of wool really put a damper on that). Ah…I feel so wonderfully geeky. The hat turned out great, though, which I’m super pleased about – practical is nice once in awhile. 

It must be my mad skills at ironing the lines of pain from my face, which make me look so ‘normal’. The problem with Lyme is the lack of physical symptoms. The grotesque and absurd symptoms begin where you cannot see-just below the skin, or a fine layer of makeup. Whenever you’d look into my face or speak with me; you would not believe the pain in my body right now.

Everything in my body aches.
My ribs have been smashed with hammers, the muscles were plucked like a guitar sting. There is a sensation in my bones similar to the hum of an angry  Africanized killer bee hive, and gradually swelling squalls of bloodthrobbingagony make the bees hunker down into my joints, defensive or protective or invasive.

Education, Liberation

Today was a very interesting day. I realized just how far I am willing to go in order to make the changes needed.

The IMP (Island Medical Program) has a section involving hands-on experience with real patients. You don’t have to be sick to help, they just need a really body to answer questions and help them to understand how to do certain things, like checking reflexes and balance and such.

There were three very nice students, and a teacher in our session. We first talked with them about my medical history, drugs I’m taking etc, but without revealing my diagnosis. It was kinda fun. If 3 second year medical students could figure out what was wrong with me, the CDC and IDSA better be doing some serious soul searching.

I was surprised when the teacher asked me if I’d ever noticed a tick bite. No, I was floored that she even asked that. Wow, where were you a year ago? But the topics moved on shortly after.

Anyways, then they got to do some tests that involved touching :(. Not quite as fun lol. They were the usual tests, with a focus on coordination and gait. Muscle strength (ex: I’m going to pull really hard on your arm and you are going to ‘resist’ me- a disadvantage, predetermined outcome of an arm wrestle. Or: Lift your wrists while I press down on them…You get the drift), and the muscle tone test (not sure if its called that), when they shake your arm in a zillion direction, obviously feeling something more informative than I am.

Okay. So after all that, the people were little very interested in my diagnosis, and when they discovered that Lyme Disease was the cause, I could tell they were very shocked, because, of course, the information that Lyme Disease causes vague arthritis was basically what they had been told so far. They were new med students, so the information would be ‘fresh’. I was shocked and pleased by their reaction, their indignation. I felt like I was really getting somewhere in the education. Perhaps it is too late for the doctors in practice, but the med students have yet to be moulded into their full length white coats yet.

I am doing this, twice a week, a few weeks a month. That is quite a few med student. I urge any other Lyme victims, who are willing or able, to investigate programs that their local universities have for training med students. We could be the difference.

Kilts, Kousins, and Kantats!

I miss the smell of wet kilts! Can you imagine missing such an awful smell! The girls used to say they smelled like owl pellets, but having never smelled them before, I cannot say for sure. They picked up the phrase after some out-week trip, and the expression sort of stuck. To me it smells kind of like if sheep had been out in the rain… Actually, my kilt is one of the acrylics, so you don’t have that ‘wet-kilt’ smell. Sitting out on the grass, running through mud puddles, climbing things…life is just one big opportunity for a mess!

All this talk of wet kilts, and today was actually the first day without rain in several weeks. My cousin, of course, was ecstatic that there was a little sun…shes been here for nearly 2 weeks, and we haven’t had a nice day at all. There was SUN, real, bright and warm (sort of) in the sky, a blue tinge to the grey clouds that suggested that there might be a sky above them.

I went to choir today. My big outing of the day…twenty-five (exhausting) minutes of singing. I love choir…it feels just like old times. It feels like I spent ALOT of time in that choir room, but I guess we just had practice very often…and all of my good friends are also in choir! I love taking back a little part of my life, one of my favorite parts, actually. Our christmas concert is soon…so excited. At least I know most of the words to those songs!

I’m pretty tired today. I feel like my brain is a little swollen, pressing painfully against my skull at the back. Or maybe I got hit with a hammer.

Me vs. the other Me

I feel sick today…like thats supposed to surprise you, yes I know. It still is horrible, no matter how many days pass in this pain and tightness, I will never adapt fully to this lifestyle. I will never have to. Hopefully.

My joints are what hurts most now. I am on the rack. I can feel them, strapped down to boards with duct tape wrapped tightly around my thighs and knees, slowly being yanked, twisted, a giants hands trying to pull them apart. The burn. A twitch. Swollen. The tendons feel like they are frozen in fear, a false move and they will crack or snap clean. The knees trembling in a nauseating way, a sensation like small hands scraping out a more concave spot. The drills, always drilling, a burning, dull heat buzz-buzz-buzzzing away, that perks up in the joints, just when you call for a respite.

aside: (Wow. The adjectives are really flowing today.)

 It is a silent sort of battle between me and…a different part of me, I guess. It is a sort of pain that makes you want to scream nonsensical words, just to express the madness and confusion and pain inside. Nonsense is the only way to make sense of this sort of thing. It is the only thing to do, and the only rule that you mustn’t break. It is a zillion times worse to give in. Honest. Silence is más mejor. 

It is dark already. I hate waking up and in a few hours it being dark…it makes me feel sort of turned inside out. Unnatural. We wake up to the sun and go to bed at night…why can’t I do this too?

A Second Opinion?

A few days ago we went to an Infectious Disease Doctor in Victoria.

I suddenly feel very confident that I can become a Doctor. Already I know much much more than a Paediatric Infectious Disease Doctor in the area of Lyme Disease.
Here’s an interesting tid-bit about my ‘sickness’….I’m not actually sick! Not with Lyme! Isn’t that great news guys *rolls eyes*? Because I have a negative ELISA Lyme test (which is ridiculously inaccurate, and well known to be), I could not possibly have Lyme Disease. A diagnosis? : nothing yet. Interesting isn’t it, that they can be so sure I DON’T have Lyme Disease, but have nothing else to offer me diagnosis wise. Hmmmm… highly suspicious, don’t you think?
We just talked for awhile. She examined me, rather roughly I thought, for some patient who complained of extreme, overall body pain. Nothing.
We had the whole crew there, the four of us (Nancy, Chris and Dave)…I call it ‘intimidation tactics’ or ‘prove-ers’ in my head…but it didn’t really work.
I was very exhausted afterwards. Its exhausting to be in excruciating pain.

Asleep at the Wheel

I am so tired today. When I was woken up this morning, I simply couldn’t get up. I felt I could have slept all day, not peacefully, but simply lounged around in bed all day. Yah, that plan sort of fell through. Awake and still asleep. My bones have dissolved-or so it would seem- they aren’t holding me up too well. I feel like overnight my brain has slowly melted and evaporated in my head. I sometimes wonder if they’d open up my head if this is not the case. I know your brain doesn’t have feelings (like nerve feelings, of course) but I feel certain I can feel the pressure of my brain against my head. I know that is swollen, like I maybe hit it a few too many times against the hard floor of a bathroom, or maybe just falling on carpet did the trick. Could it be bruised from those times I hit it on the glass table, a wall, a desk when I fainted?

My brain is drunk, stoned, buzzed, utterly wasted, out to lunch- whatever – and then decides to drive, which obviously doesn’t work out too well in its favour. The brains a train wreck. I train wrecked.

Why is it always when I think I am going down the right road, I suddenly, violently, veer off course and start heading downhill again. Downhill fast. Is there no right path, no even road, no pristine walkway with lighted signs? No wonder my journey has taken so long, what with me taking two steps forward and then one back.

All Possible

Today was a very special day. I went to real school AND a real class. Whoa. Careful now. Next you’ll hear I’ll be globe trotting. Small steps at a time. Steady wins the race. You all know this.

I went to Spanish, which is such a fun class, and always has been. Once you hit grade 12, you are no longer ‘required’ to take a language, so the people in a language class really really want to be there, which is a nice change. I love speaking Spanish. I still can, which surprises me, although I get my ‘you’s’ and ‘me’s’ and ‘they’s’ and stuff confused. I mix stuff up just like I do in English. We learned all about ‘se’, which is a handly little pronoun (I think that’s what you call it), but it does a lot of work for us in Spanish.

I’m so happy to be back at school, in Uniform. It feels so normal. I don’t feel as out of place, I don’t stick out in a group of people I’ve known more than a third of my life. I love you guys! There is peace in familiar chaos.

I’m very tired though. I feel like I’ve been through the wringer washer the second time round, my heart is in my stomach somewhere, my stomach lost in my throat, my legs jelly (god knows where they ended up) and my brain squished too tightly against my skull. I’ve been reorientated. Reorganized. I feel my pulse all over, like my heart is a hammer and the blood nails driving into me all over.

I worry sometimes, that the feelings won’t go away; that the pain will endure, that it will have learned a lesson about patience and endurance from its victim. I worry it will fight as hard as I fight it. A fraction of the will, even then I’d worry. But I know all things pass. I’ve read this in books. I’ve heard it said. They say that life will change and endure. I hear time heals all wounds. I know this is true, or partly, but time heals all wounds, except the tracks it makes itself through a life.

Walk On.

When I was young, I never considered it, but I just assumed that the world would walk on forever, and nothing would change. That I could always walk down the local streets and laugh with friends and nothing would change. I figured that there are things in life that just can’t change, because they shouldn’t. I figured that will power alone could keep change at bay.

Of course, I was young. The world walked on, but took a new path, and it takes a new route through time every day. How can you keep up if you are not abreast of these changes?

Today I feel sick sick sick. Low. I could stare across the room blankly forever, happy to just be still and not think. A few of my blood counts are low, so we are stopping the drugs for a day, and then we’ll pick them back up after I’ve been tested again. Lucky me :P.

The days pass by in mostly the same ways. We go places, and occasionally see people, but I hope we can see more. I miss everyone so much. It’s tiring doing things, but I like it better than doing nothing…

The thoughts aren’t stringing together right today, the words not flowing off my tongue. I feel lethargic and heavy. Tomorrow it will be better, it always is.


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. 

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