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i am alive. just not feeling up to blogging.
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.
the accident
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?
insomnia
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.
fear of medications
over the years i have taken a lot of medications, but now that i am on iv antibiotics (abx) i have a new issue with meds. medications are usually known in our world to help ease pain, to bring some comfort, and to generally make you feel better. that is not the case for a person with lyme disease, abx make you feel awful. yet i have willing taken some form of antibiotics for over a year now. it takes great strength to do this, to push a pill down your throat or to start that next iv knowing that it’s going to make the rest of your week a living hell. the only similar situation i can compare to is chemo and atleast then there’s a nurse pushing the chemo in. i have to push my abx in myself, i make the choice when to run the bags, and i have to hook myself up. i make the choice to make myself sicker, in hopes of someday getting better. it gets hard, i worry, i put it off, i bargain with myself, i’ve become a master at procrastinating my meds. i hate it because it often leads me wide open for criticism from people who do not understand. or from my wife, who just wants the best for me and knows those medicines with make me better. (she’s much more understanding now that she’s on her own treatment) to most people antibiotics are great drugs, they stop infections and save lives-so it is truly hard to understand why taking antibiotics can cause me so much hard. i need to dose so very heavy abx tonight, merrem (go ahead, look that one up) and i was just thinking about how my next two weeks dosing this medication are going to be like. i’m on morphine and 100mcg of fentanyl every 72hrs. to to try anticipate the pain that i know this drug causes me. it left me unable to get up from the bed and my body shell shocked in pain last time. i’ve had two weeks to rest up and to try to adjust my medications to give me a better shot at surviving. all i can say is we will see, i have to forge ahead into the darkness.
Couple of Questions
I thought this would be interesting to answer these questions since I don’t talk about my relationship very much. I am now.
What are your middle names?
I don’t have one. If I did it starts with a D. Jakki’s is Jacqueline.
How long have you been together?
5 years, 3 months.
How long did you know each other before you started dating?
About two years.
Who asked whom out?
She asked me out for pizza, coffee, or just to hang out. She got my number at a winterguard rehearsal, I wrote it on her hand and she emailed me that week asking if I would like to hang out. I gave her a call and we met at Ham’s. I guess it was a date since I had a cherry Pepsi and some cheese and chicken quesidillas and she wouldn’t let me pay.
How old are each of you?
She’s 26. I’m 22.
Whose siblings do you see the most?
I don’t have siblings and she has one sister, so I’d have to say we see her sister more than my non-existent siblings.
Which situation is the hardest on you as a couple?
My illness and the lack of support we have received. People have been everything but helpful and even now when I have a real diagnosis there’s no real difference. Conversations have been had to try to improve understanding but no real improvements. It is more difficult now that she is sick as well. I feel like most of our struggles have been a result somehow of illness.
Did you go to the same school?
Different high schools, same college.
Are you from the same home town?
No. We’re both from North Carolina. I’m from a tiny town and she’s from a bigger college town, we met in the middle to go to college.
Who is smarter?
Depends on the subject.
Who is the most sensitive?
Ahem. Next question.
Where do you eat out most as a couple?
Cheap Japanese, Jimmy John’s, Boston Market, Mario’s Pizza/Amante Pizza, and Cook Out. We usually need to eat cheap and on the move. A nice meal out would be at Pie Works, P.F. Changs, or once a year at Melting Pot.
Where is the furthest you two have traveled together as a couple?
Florida.
Who has the craziest exes?
She does.
Who has the worst temper?
Lately, I would say me. The pain makes me really angry and I get more angry that I cannot control it. If she gets in a funk I have to really keep focused to help her out of it. The dogs bring out the worst in her at times.
Who does the cooking?
She does, because I can’t. She is a good cook when she has the energy and she’s getting quite handy at baking. I actually like to cook but I have never really had the chance to explore that interest. I did cook for us a bit when I was first starting to get sick but I worked a lot at that time, so I think she still did most of it. She makes awesome birthday cakes for me every year, good lasagna, and good Mac and Cheese.
Who is the neat-freak?
I am. She can be as well, but things fall apart when you’re sick.
Who is more stubborn?
That’s a tug-of-war that could last for centuries.
Who hogs the bed?
She dances in her sleep, need I say more. I am like a tornado to the sheets/down comforter. Our solution is two down comforters and two top sheets.
Who wakes up earlier?
If she has to go somewhere she does. If nothing is planned, it’s likely me because a) I’ve been up all night anyway or b)Keely wakes me up around 9am singing Opera.
Where was your first date?
We I think have agreed that it was at Ham’s since she paid for my food, but we were not officially dating at that time. I cannot remember our first date after we were official.
Who is more jealous?
Not sure, you’d have to ask her. I’m not by nature a jealous person.
How long did it take to get serious?
She was always serious, watching me from afar and nervously planning to get me out to dinner. I guess I was fairly serious since I let her come over to my house after eating dinner. I think two weeks later we were a couple (the point where I became very serious) and three months later I had a ring on my finger. I guess if we’d have been married really fast.
Who eats more?
She does, no question. I have always liked that about her and my family likes that about her.
Who does the laundry?
She does, I’m defunct.
Who’s better with the computer?
Me, maybe.
Who drives when you are together?
She does now that I can’t drive but I used to do a lot of the driving.
i survived.
i hope to updated soon about my visit to the wizard on friday and the final guard contest on satruday but right now i’m recovering. soon.
