I’ve heard that phrase aimed at me once or twice. I sometimes find it amusing – it’s ironic because i don’t have an overly crude sense of humor, yet I am riddled with illness! (as I wrote that, I heard it in my head being said by a television game show host, as if announcing the winner of a consolation prize. weird.)
Which brings me to the reason for this post. Many, many people have asked me over the years, “why are you sick so much?” At my most impatient moments, I give them a terse response like, “my parents dropped me.” If I’m in a disclosing mood, i give them the real full story. The latter will be contained within this post, mostly because I am lazy and growing more tired of the repetition.
Currently, i have a lung infection. Most people seem to react strongly to hearing that. Well, I’ve had hundreds of lung infections. When the infections get bad, i have to take IV antibiotics like i’m taking now. Oral antibiotics don’t work very well on me, partially because of bacterial resistance, partially because of my malabsorption. (more about that later).
IV antibiotics are strong. If injected into a small vein, they will literally eat away the vein until it ceases to exist. To remedy this, they invented a PICC line. It’s basically a long catheter that travels all the way from your upper arm down into the Vena Cava a couple inches from your heart. I had one installed last week. It sucked. The radiologist that was putting it in dug around in my arm for 15 minutes with a huge needle until he finally gave up and called in his replacement. Anyway, its in now – for those of you that wonder what it looks like, i’ve included a picture.
It's just a big tube jammed into my arm!
(The best part isn’t even shown in that image: the red and blue ports that look like RCA jacks. you know how long i’ve waited to have audio jacks coming out of my flesh?) So now, all of the sweet IV antibiotic goodness is being fed into me. The infection is getting eradicated, and my lungs are clearing up. The IV antibiotics do have the unfortunate side effect of general fatigue, but i’m managing. Back to the story…
Before I was conceived, somewhere along the process of meiosis a genetic mutation occurred. The result? Hypogammaglobulinemia. I have it. My body does not create IGG, which are antibodies used by white blood cells to fight infection. Without treatment, I would likely die of complications from infections or sepsis. Every three weeks, I get an IGG transfusion that brings my blood gammaglobulin up to a normal level. This is why I am such a fan of medical technology. If I had been born 20 years earlier… well, you know. What current medical technology cannot address is the lack of IGG in my mucus membranes. As a result, I constantly have low-grade infections in my sinuses, my lungs, and my intestines. The latter leads to some form of malabsorption.
I think that pretty much says it. If you have any comments, i’m down to respond. Oh, and please don’t feel sorry for me – I love my life, and everything that goes along with it. This is just a minor setback. Amazing things are coming…
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Ugh that sucks. Im sick all the time too. I have a melange of illness that are comorbid and conspire against me. I feel your pain. I have had spinal meningitis 2x. I have had an emergency abdominal surgery where now i have a foot long scar down the front of me and 6 inchs wide. I had a colostomy for a while too. That is just a couple of the things that went wrong. When I had the spinal meningitis, I had 2 spinal taps each time. Also, I have deep, small, rolling, disappearing veins. I hate to get my blood drawn. I hate cocky phlebotomists that think they can draw my blood.
i hear ya – you can likely imagine the discomfort of the PICC line escapades!
Well, that kinda’ sucks. But you’re rocking on, and we love, well, at least /I/ love your music. Just remember you got a whole boat load of supporters behind you.
*claps and claps again*
Rock on, man, Rock on. Or, Dark Electronic Pop Grunge-Thing On! Whichever you prefer.
thanks – it feels good to have people behind you
haaaa… We’re both sexy… AAAND high maintenance! Prizes all around.[img]http://photos-a.ak.fbcdn.net/hphotos-ak-snc1/hs029.snc1/4290_1140758871471_1002393371_30426304_3700064_n.jpg[/img]
Sorry to hear about this. Medical technology IS a good thing when it helps a person live.
Keep strong and hopefully they’ll come up with something better so you won’t have to go through this.
indeed. all we can do is be optimistic about the future, and keep a good sense of humor about the present.
Hypogammaglobulinemia. Quite a mouthful.
That’s rather unfortunate. But it’s good to know you’re able to cope with it. And yes, hooray for medical technology indeed!
And the RCA jacks-looking thing, I can imagine. Now if it were real audio jacks, that’d be cray-zeh — music literally flowing in your veins.
let’s just pretend that they are real, k? the next album will be called ‘blood music’. (just like the Chapterhouse album)
You Chuck Norris that infection Devin!!
[img]http://i204.photobucket.com/albums/bb62/victorkahn/Chuck-Norris.jpg?t=1245200595[/img]
if only they could make micro sized copies of Chuck Norris that could be injected into my blood stream…
Dude, if they did that, you would become immortal.
I knew you had a lung infection but never thought about the complications of it. It sucks you have to go through all that but it’s so nice to see you take life the way it comes and enjoy it
I just hope you are feeling alot better xoxox
thanks, Holly.
I know you may think it’s pretty cool — being a musician — to have RCA jacks implanted in your body, but come on … RCA jacks? Sheese, might as well put eighth inch mono jacks instead. At least consider an interface with a higher impedance… Obviously XLR would be the cheapest way to upgrade from your current situation, but XLRs are bulky and have a rather large footprint. If you’re willing to shell out the money for it, i think SPDIF would be a good investment, or possibly optical, although i’ve not used optical so im not aware of its compatibility in human flesh.
Audio over ethernet would also be a quality option to consider, but you’d likely need some sort of break-out box or converter, which would add to expense and put some limitations on your mobility. Several manufacturers use their own proprietary connections, and also you could consider PCI-cardbus or AES/EBU, but again these cater to a narrower part of the audio-to-flesh market, and i think in the long run you’d run into compatibility and support/update issues.
For now, in my opinion SPDIF is the way to go towards your goal of total audiophysiological integration. Understand you’re also going to eventually need to consider MIDI interface options, as well as storage concerns. And with the advent of SSD just around the corner, i’d say wait about a year before thinking about storage options, as the now-commonplace 7200 and 10000 RPM platter drives will soon be replaced with a much more efficent way to store audio in your body.
Hope this helps.
LP
Hmm… you could utilize Complex Nerve Impulse Control Voltage (CNI-CV) and connect your own beating heart directly to the instruments. Become one with the Rhodes, you know?
However, you may not have access to equipment that supports said technology and may wish simply to install a MIDI port in your arm, as MichaeLPlaster has suggested. This, however useful it may seem, is advised against, as current generation Digital-Flesh Converters (DFC’s) are flawed, demand constant, very painful updates, and will likely be surpassed by the end of the decade.
If I were you, I’d stick with good ol’ 1/4″.
Maybe install a digital interface next time you get a lung infection (hopefully a long way off).
I’d be worried about the fragility of the spdif connectors / patch cables.
I chose the digital coax (for my receiver) for that reason.
I’d also be careful when selecting a vendor for the DAC (you ARE analog on the inside, after all) – I’d hate to see you brick yourself with a bad firmware upgrade.
I guess you were in a disclosing mood when you were on your computer. I think it’s safe to say that everyone who is on this site is glad that you cope with that aspect of your life and that you keep an optimistic outlook. I hope you recover quickly and hope to see your show when you tour!
i didn’t know your lung butter issue included a port. wow! i am sure your veins will be so much happier now! hope u feel much better soon. sending love and well wishes your way! peas, luv n beatz – beez
Nice to know you’re taking it the best way and even having fun out of it. Hope you get well soon.
I hope the lung infection is under control. I too have Hypogammaglobulinemia. Your right it is a shitty illness, but one you just almost get used to. I never thought of my PICC lines as RCA jacks though! I will never look at my PICC lines the same way again. Good luck with the treatments! You will be in my thoughts.
wow, its rare that I run into someone else with that. thanks for writing!
thanks, all, for the various responses…
I know what you mean about medical technology. I’m so glad that Im alive right now in the 21st century, and that I get to give birth to my daughter with no pain (I know, I know, No Pain, No Gain, right?) but after deciding that I wanted to give birth unmedicated just like many women before me, and experiencing the pain until I couldn’t take it any longer, boy! was I glad that epidural exist!
how did women do it? not just once?
Anyhoo, I hope you are doing better, or at least enjoying those side effects! Yay for fatigue!
I understand. I was always sickly as a child as well. I am prone to getting pneumonia so i carry antibiotics with me everywhere to counteract any sniffles that do not feel right. I am all about wellness and love the medical community for new advanced in technology that enable me to breathe better in this lifetime….amen.
Glad your feeling better.
Blessings,
Elena
I’ve never experienced a disease as severe as what you have but I a very familiar with illness. My dad died of cancer when I was 9 but he lived through the painful treatment for more than a year. When I was 17 I had surgery to have my Gall Bladder removed, the doctors told me I was just constipated for over a year until my gall bladder was about to explode. They finally found the truth, my gall bladder was the size of a loaf of bread and was crushing all my other organs. My surgeon said she had never seen one so bad in her whole career. Illness is a horrible thing but Im glad to hear that you still manage to keep a smile on your face. Thats exactly how my dad was the whole time, I hope things get better for you. -PEACE-
i treasure my meeble cd/dvd even more now knowing what you have been going through. your positive mental attitude is a beautiful thing. it really makes a difference when things are rough. take care. hope to see you play in oz one day
I’ll be praying for you, hopefully you’ll feel better soon. It is wonderful that there is something to help you through your bad days, Mr. Meeble!
The last 2 lines are my favorite. It’s the same thing I tell people on a daily basis. I was only 21 when I was diagnosed with brain cancer and given six months to live. Thanks to an experimental treatment and seeking a second opinion I’m still here 6 years later. I have a little bit of a limp and a huge scar on my head to show for it but I’m alive. If there is one thing I took away from the whole experience, it’s you gotta live every day like it’s your last. You never know what the next day is gonna bring. I’m glad to hear advancements in medical technology are improving your life. I’m sure this is just one of several that will continue to improve your condition over the course of your life.
Peace
absolutely, man. congrats on you ‘getting it’. thank you.
Obviously your situation is about a million miles away from anything I’ve ever dealt with but I can empathize a lot with what you’ve said. I guess we all have our “cross to bear”, some heavier than others but in the end, this life is a pretty precious gift which I believe you have a good grip on. I think that in itself is a beautiful thing.
Hey, if this sh*t were easy, would it be as gratifying as it is to succeed? You’re like a like a 70s Gothic Lounge Singing Sooper Hero!!! I tip my beanie to you mang and your sooper radness. Well, and to Mike because he makes plugging audio tools into you sound kind of neat. He’s kind of weird with his “no pants wearing” and all.
- kimby
.-= kimby´s last blog: i just turned 30 and all i get are these pesky vampiric abilities! =-.
thanks for sharing your story. hearing things like this really puts my life in perspective. good for you for having such a positive outlook because many people could not, myself included. and i agree about how great medical technology is. it’s truly amazing what is being done every day. hopefully there will continue to be rapid advances that will help you with your condition. best of luck to you!
.-= krrrrn´s last blog: K-W-L Demo Class =-.
wow.
nice to meet you too, Devin?
I can’t how to reply to you on Twitter(lame eh? lol)
was completely captivated by this blog.I have a thing for anatomy and whatnot, so thanx for the pic tee hee.
My best friend had something similar to you in that her immune system what kaput. I can’t say I feel your pain, but I’ve seen it.
that doesn’t help you does it.argh! n/m. Never been good at the poetic and meaningful words of comfort.
hows this: I wish it was me instead.
AMZ
thanks
I get “you’re a dirty bitch” a lot. Totally unrelated to my hygiene. Looks like you take what life has to offer & still make it alright. Good for you
haha
thank you all
that’s seriously crazy.
i don’t even know what else to say, that’s just gnarly.
I had to have a PICC line for about 2 weeks last year for my own reasons. I was just glad they had a way for me to get out of the hospital, then I saw the scalpel and was sacred. I’m glad that you have treatments to help you stay on the up in up, and that you have the mind set to match it.