Withdrawal, Picc Lines, and Saying Bye to Jax
11 years ago
I really hate writing these journals. That's why I've put this one off for so long, I just flat out didn't want to write about my deteriorating health anymore; it's demoralizing and doesn't feel worthy of attention. Plus a small part of me thought "Hey, maybe I'll get better and can just go back to work and not write any more of these stupid things."
But that's not the case. I'm not getting better, not anytime soon anyway. Things started to get more intense around late September when I decided, after a lot of research and deliberation, to have a picc line installed. For those who don't know: a picc line is a tube that goes into your body (in my case it starts in the arm and then 43 inches later ends in my chest cavity) directly to more efficiently distribute medication; in my case: antibiotics that should eventually kill off this Lyme thing. Here is what mine looks like: https://twitter.com/Boneitis/status.....71127878799360 It doesn't hurt (veins don't have nerve endings) though if I lie on my side I can sometimes feel it internally which is a tad odd. Sometimes it gives me stomach aches. I haven't noticed much improvement yet but I have been to the ER three times this past month (first two ambulance rides! Whoohoo!). The first one was because I simply passed out after having chest pains, the second one was a mistake with my picc line where we, and I am not exaggerating, gave me my medication dose 2,640 times too fast. It was INCREDIBLY painful and I've never fought so hard in my life to stay conscious. My memory of what happened is...fuzzy.
The third time was the real kicker. As I've said before: Lyme attacks the immune system so I have multiple co-infections and other health issues. One of the ones that has been very hard to deal with has been heightened anxiety, which landed me in the hospital twice in the spring. This was different though. It was a Monday, my anxiety medication had gotten low and I'd called in for a refill on the previous Friday, which was really a mistake on my part. By Monday it had not been refilled and I played phone tag with my doctor as I desperately tried to get them to refill this medication. The nurses continuously told me that they'd "have it done by the end of the day" and that "The doctor was in another building". I now know that they are liars. Five o'clock rolled around and: no refill. The problem here was that I'd spent the previous nine hours in a new kind of hell whilst trying to negotiate my health and well being over the phone. I can't even describe it. I sweated and froze intermittently, anxiety pangs attacked my stomach and radiated out as pain. I thrashed and gnashed my teeth uncontrollably. I choked on air and gasped for breath for hours. I honestly thought I was going to die It was a shitty Monday.
So at five thirty I went to the hospital. Just to get my medication refilled. That's all I needed, that's how fucked up the medical system is in a first world country. I found out from my nurse that the medication I needed (lorazepam/ativan for those interested or curious) has "severe to fatal withdrawal symptoms". My doctor who prescribed the medication had opted to not tell me this AND not get me a refill in a timely manner. I didn't even know it had withdrawal symptoms much less that they could kill me. I had been "off" for about two and a half days. Suddenly that scene from "Trainspotting" seemed a lot more relatable, though what I felt was like that but for a few days instead of a brief montage. Suffice it to say: I am looking for a new doctor.
This was all compounded in terms of "Overall Shitiness" by the fact that my dog Jax had died suddenly the day before. We brought him to the vet because he was breathing funny. They said he had congestive heart failure and he was put to sleep. He has been at my side through this entire Lyme disease mess and I couldn't ask for a better companion. He would've been 15 in January. This is the last picture I took of him (left): https://twitter.com/Boneitis/status.....21559699087360 We'll be receiving a box of his ashes in the mail.
Luckily it's not all bad. I still have two wonderful dogs in my life (Ranger and Tanner) and, despite difficulties on all fronts I still plan to attend MFF. This year I'll be going with my longtime friend
talenshi who has been an ENORMOUS boon to me this year. She's also a fantastic watercolor artist and I hope that, once I'm better, we'll be doing some major collaborating. Making it to MFF will be tough but I really want to be there. I'm going to do everything I can to finish off older commissions and make it the best convention I can. A lot of people over the course of this thing have stepped up to help me (including one anonymous commissioner who volunteered to put himself at the end of the queue. I was so overwhelmed by his words of support that I couldn't bring myself to respond. He says he reads my journals. You know who you are, you're awesome.). Countless others have sent me notes, emails, tweets, steam games, all sorts of things. Trust me when I say, when I've beaten this stupid fucking disease: it will be worth it.
-Bone
But that's not the case. I'm not getting better, not anytime soon anyway. Things started to get more intense around late September when I decided, after a lot of research and deliberation, to have a picc line installed. For those who don't know: a picc line is a tube that goes into your body (in my case it starts in the arm and then 43 inches later ends in my chest cavity) directly to more efficiently distribute medication; in my case: antibiotics that should eventually kill off this Lyme thing. Here is what mine looks like: https://twitter.com/Boneitis/status.....71127878799360 It doesn't hurt (veins don't have nerve endings) though if I lie on my side I can sometimes feel it internally which is a tad odd. Sometimes it gives me stomach aches. I haven't noticed much improvement yet but I have been to the ER three times this past month (first two ambulance rides! Whoohoo!). The first one was because I simply passed out after having chest pains, the second one was a mistake with my picc line where we, and I am not exaggerating, gave me my medication dose 2,640 times too fast. It was INCREDIBLY painful and I've never fought so hard in my life to stay conscious. My memory of what happened is...fuzzy.
The third time was the real kicker. As I've said before: Lyme attacks the immune system so I have multiple co-infections and other health issues. One of the ones that has been very hard to deal with has been heightened anxiety, which landed me in the hospital twice in the spring. This was different though. It was a Monday, my anxiety medication had gotten low and I'd called in for a refill on the previous Friday, which was really a mistake on my part. By Monday it had not been refilled and I played phone tag with my doctor as I desperately tried to get them to refill this medication. The nurses continuously told me that they'd "have it done by the end of the day" and that "The doctor was in another building". I now know that they are liars. Five o'clock rolled around and: no refill. The problem here was that I'd spent the previous nine hours in a new kind of hell whilst trying to negotiate my health and well being over the phone. I can't even describe it. I sweated and froze intermittently, anxiety pangs attacked my stomach and radiated out as pain. I thrashed and gnashed my teeth uncontrollably. I choked on air and gasped for breath for hours. I honestly thought I was going to die It was a shitty Monday.
So at five thirty I went to the hospital. Just to get my medication refilled. That's all I needed, that's how fucked up the medical system is in a first world country. I found out from my nurse that the medication I needed (lorazepam/ativan for those interested or curious) has "severe to fatal withdrawal symptoms". My doctor who prescribed the medication had opted to not tell me this AND not get me a refill in a timely manner. I didn't even know it had withdrawal symptoms much less that they could kill me. I had been "off" for about two and a half days. Suddenly that scene from "Trainspotting" seemed a lot more relatable, though what I felt was like that but for a few days instead of a brief montage. Suffice it to say: I am looking for a new doctor.
This was all compounded in terms of "Overall Shitiness" by the fact that my dog Jax had died suddenly the day before. We brought him to the vet because he was breathing funny. They said he had congestive heart failure and he was put to sleep. He has been at my side through this entire Lyme disease mess and I couldn't ask for a better companion. He would've been 15 in January. This is the last picture I took of him (left): https://twitter.com/Boneitis/status.....21559699087360 We'll be receiving a box of his ashes in the mail.
Luckily it's not all bad. I still have two wonderful dogs in my life (Ranger and Tanner) and, despite difficulties on all fronts I still plan to attend MFF. This year I'll be going with my longtime friend
talenshi who has been an ENORMOUS boon to me this year. She's also a fantastic watercolor artist and I hope that, once I'm better, we'll be doing some major collaborating. Making it to MFF will be tough but I really want to be there. I'm going to do everything I can to finish off older commissions and make it the best convention I can. A lot of people over the course of this thing have stepped up to help me (including one anonymous commissioner who volunteered to put himself at the end of the queue. I was so overwhelmed by his words of support that I couldn't bring myself to respond. He says he reads my journals. You know who you are, you're awesome.). Countless others have sent me notes, emails, tweets, steam games, all sorts of things. Trust me when I say, when I've beaten this stupid fucking disease: it will be worth it.-Bone
FA+

We love ya, man
Before that i would have x ray after x ray and ct scan after ct scan of my sinuses where they completely and utterly ignored the pituitary tumor that grew to a golf ball sized mass for years before then.
And dude, your whole situation in regards to the medical establishment sounds like a potential malpractive lawsuit. These idiots at the very least, need a visit by a medical review board.
This year has really sucked for me personally but I keep telling myself that things will get better
I hope you have fun at MFF - the strange thing is, when I saw you at AC'14, you looked.. well, fine. :D
Honestly, with the heightened anxiety and medication and stuff.. the important thing is to stay relaxed and stress-free. Do what you can to enjoy and save up energy.
Best wishes to you, hope you feel better soon.
--M.
Regardless: thanks for the super thoughtful comment and permission to relax! I'm terrible at "taking it easy", makes me antsy; I just wasn't cut out to be a sick person!