I would like to be able to speak more from my heart than from my mind. It takes much more courage to say out loud what my heart says to me and I’m sure there’s a reason for that. I hope one day that I can once again say out loud what my heart feels, instead of protecting it constantly and letting the words spill out from my mind.
I hope one day I can do and say the things that I wish about. I hope can do it and say it before it’s too late.
That is all.
A friend with Lyme checked up on me lately and I thought I’d share my response, as it’s not the type of things I would normally share with just anybody.
Thanks for checking in and saying hi. That post wasn’t about lyme but it easily could have been. I’m just going through a rough time on top of lyme. I am really struggling emotionally at this point and I’m far more depressed than I’ve ever been. Part of that is lyme, part of it is PTSD over past events, part is dealing with the anxiety of being constantly surrounded by illness, and part of it just simply the fact that I’ve had enough. I hope to start seeing somebody after my surgery Tuesday because I am no longer comfortable in my mind or my body. This has been a long time coming and I’m more than willing to ask for help. I have no doubt that in time I will be able to heal but my mind needs to be healed just like my body does. I guess at this point lyme is really the icing on the shit cake, and that makes it hard to focus on my physical health. I’m not eating anymore but amazingly, I haven’t lost any weight. I should be emaciated at this point but I’m not even close-I keep gaining weight actually. It’s hell and it’s even worse now since Jakki is on treatment-it’s so much more stress and so much more worry. I can fake feeling ok, I do it all the time in my videos but the truth of the matter is I’m far from ok and I think most people with lyme deep down are in some similar place. I’ll keep making videos and keep pushing through, I just hope this cloud over my head will lift sometime soon. Thanks for checking in. Hope you are taking care and healing.
Check out my dailybooth to see the latest photo of the day.
i have to apologize, putting words together has been very stressful for me lately.
have had a small break from IV/ABX. two weeks off. i start up tuesday and a less overwhelming (hopefully) regimen where we are adding in another drug. after two weeks i have to report on how well i am able to tolerate this new drug/regimen and that will help to shape my plans for the rest of the summer. it seems that my IV treatment will continue well into august and perhaps further. at this point it is really all up in the air. we are trying to find the balance where i can keep using abx and not be overwhelmed. i have yet to be able to recover from this drug. the weeks i spent off were really no different than the weeks i spent on. spending a lot of time lately trapped in my mind, trying to make plans for a very convoluted future seems impossible. i will try to update when i can.
my cousin died sunday, he was just a kid, 19 year old going to community college for graphic design. he was the cousin i was the closest to in age and we grew up together. spending the weekends with our dads who were both divorced. we both lived with our mom’s during the week and we both grew up too fast. i could always be myself around him, he was always grounded and we understood each other. no questions asked. i remember his bright red hair, his goofy smile, and his love of anything that could go fast. we always had that in common.
i remember the sunday afternoon well, i’m not sure how long ago it was but we were young. he was 9 maybe, making me 12. but it was a typical sunday, i’m sure there was a race on that day and everybody had gathered at my grandmothers house to eat ’supper and watch the race. we could play video games inside but it was a nice day and we wanted to ride the dirt bike. he was old enough to ride on his own but we always rode together and i never remember us fighting-i just always drove. we did the usual lap, we stayed in the yard next to the garage, it was really a field and it had a tree line the gave some privacy from the house next door. we could go around the fire pile, next to the line of trees, make a left turn at the two trees that set at the end of the lot and another left to pass the driveway and then the garage. we could do this all afternoon. it is a feeling that as long as i live will never leave me, something just feels right when i’m on a motorcycle. it’s this feeling of freedom, tasting the air, being able to choose where you go, and not stopping until you run out of gas.
i’m sure it was late afternoon at this point, my hands were numb from the vibrations of the handle bars even though i always wore gloves. my helmet visor was down because if i left it up too long tears would run down my face from the wing. after we made the turn at the trees i decided to go into the ditch alongside the road and then come back up beside the second tree to complete the lap. we did this every once in awhile to change things up, but mostly because it was something my grandmother hated us to do and it felt daring. i didn’t take a long enough route into the ditch and we stalled on the front wheel. we both toppled over the handle bars and landed in the ditch with the bike. a motorcycle makes a different sort of sound when it’s on the ground, it doesn’t sound right-the engine sounds like an angry animal grasping for breath. finally the bike chokes and shuts off. i hear none of this, during accidents the sound always seems to go out for a bit. i find myself on the ground and confused, then i see the bike, and then i remember my cousin. as i stand up the helmet comes off and i go to check on him. he’s still on the ground but he’s conscious. i raise the visor on his helmet and ask if anything hurts, he’s tough, so he says no. he sits up and takes off his helmet. by this point, somebody in side has noticed that the hum of the bike going around the yard has stopped, most likely my grandmother, and his dad comes out of the house. “is everybody alright?” he asks. we’re kids, we’ve wrecked before and there’s no damage to the bike and we’re both standing. everything seems perfectly normal. we decide it’s time to go inside for something to drink, he heads into the house and i go take the bike back to the garage. i carry both our helmets and hang them up as i set the bike down on it’s kickstand. i notice that his helmet is scratched up, it’s much more noticeable then mine. my gloves go on the shelf next to the helmets and i walk through the garage and turn off the lights.
i don’t remember much of the rest of the afternoon, the details are fuzzy and i often wonder if there’s a reason for that. what i do know is that later that evening my cousin was not acting himself and was taken to the ER. they did a CAT scan and found a tumor in his brain. i remember hearing members of our family being thankful that the accident had been the reason that the tumor was found. i do not recall hearing that it was cancerous. he stayed in the hospital for a week or two and i stopped in to see him. he looked like he was feeling pretty good and bragged about all the candy that he was getting.
life went on, it always does. he got back to playing pool, basketball, and drawing. he was quite a talented kid. i remember seeing him much later. he was 15 and i was driving when my grandmother died. i remember driving him to the funeral with the top down and watching him smoke a cigarette. i wasn’t going to give him a hard time but i certainly would not stop to buy him a pack, as he requested me to. our family fell apart after my grandmother died, just like it had when my grandfather had passed years earlier. i remember talking about it after the funeral. we knew there wouldn’t be a reason to meet at her house to eat ’supper anymore. no more getting together to watch the races. and no more time for dirt bikes. that was four years ago. we were right, we did fall apart. i’ve barely seen my dad’s side of the family.
i’d heard nothing until sunday night. he died. it was the tumor. so many questions circled my head but most of all-why him? why not me?
i should be dosing merrem tonight and taking some more bactrim but i haven’t yet. i’m up late and i’m putting it off as per usual as of lately. i am just really struggling to put this poison in my body. at this point i get sick every time i have to do a sailene flush, which is atleast once if not twice per bag of fluids or abx-once, sometimes twice a day. it’s a miserable feeling. heading back to the wizard on may 6th to see how many more cycles i have to go and i’ll have to sit in that big blue chair that makes me so sick to my stomach, even now thinking of it.
i’m up late and i’m putting it off, not much is new.
