at least in this case, and so many others!
at least in this case, and so many others!
my dearest Rizzo,
i saw this card the other day after i saw you on skype for a minute, looking so pained and so terribly uncomfortable in your own skin, and for some reason it called to me. i think because these chairs, this image makes me think of medical waiting rooms and what can feel like endless waiting, and the kind of literal patience and total fear and utter faith being a patient of treacherous and mysterious illness can entail. my heart breaks for you as i see you, bravely and gracefully, muster all your resources to manage the depths of this fold, again. me, our family, and the whole wide world - we are so blessed to know your grace and your principle and your faith and your action, and i am so thankful to you for fighting this fight for your health for so many years.
though my time in the thick of it is short relative to yours, i want you to know that part of me will always be with you in it. in spirit, in emotion and in the darkest moments, please count me as a sidekick, as someone you can rest some of the weight on, as someone who will hold your spirit and your body in a vision of health and comfort, and in turmoil, and pain and waiting.
i also see the image of these chairs and see firm holds, brightness and full support. sometimes our bodies can't weather the toll alone and we need people, and all kinds of furniture, to hold us up. let all of us - human and beds and chairs - help hold you up Rizzo. and know always, as i hope you do, that you are surrounded by love and light and human bolsters. and at least some of us can handle the chaos and collapse of the emotional world of illness - so lean on us, lovers of Ridvan.
you are one of my most favorite people and most treasured bolsters. you inspire me always towards more love and faith and connection, and you have supported me like a true parent and comrade and i love you dearly forever and for always.
i'm into my second month without daily IV meds! my first month i happened to be staying at a friend's place with a pool, so i swam that pool like it was my job. my first job was a daily battle with the prison industrial complex (in particular as it extends into the world of parole), so my second job was a series of victory laps and an attempt to maintain my mental health.
i don't think i have the words to express how amazing it feels to jump into and all over that water. it's not just that i can because i am free of the 24-hour needle in my arm. i can because most days now i am living without severe pain, and some days with no pain at all. through the month of july i built muscle from swimming and some working out. i did it cautiously but with growing confidence and i didn't suffer from it. it felt strange and amazing to feel like my body was becoming mine again, in strength and ability. not that it wasn't mine in pain and illness, but i didn't want it to be.
i did suffer at the end of the month after moving back up to oakland from LA. hurt my spine real bad and was laid out twice for a few days. nothing like severe pain to remind me of the bad old days. i had a couple bad bouts in may too and i've found that i go to total-emotional-freakout quick when the pain comes back. definitely some kind of ptsd. hard not to slip into total fear of a lasting comeback, the trauma of the years of pain without release.
but let me be clear. i am in a whole new world now. i move through the world more like i used to, usually with very few modifications. i took these limbs back to the dance floor this summer and i loved it. and i swim, i swim, i swim. i shower without medical devices. i successfully tapered off ketamine. i spend very few days a month on pain meds. and right now i take oral antibiotics and nothing needled into my arm straight to my heart.
last month craig took a video of me flushing my port, with my assistant lis. i still have a port-a-catheter in my arm while we see how i do off IV meds, and i have to flush the line once a month. consider this how-to video a place holder until we try harder. next time i promise to speak more like a loud american and less like a quiet canadian.
The mystery of autism may never be solved, but research is giving doctors new hope in trying to put the puzzle pieces together. Doctors are starting to find links between children with autism and other diseases that may play a role. One of those links now has a name, it’s called “Lyme Induced Autism”.
i successfully accessed my own port with a needle this week! it wasn't supposed to go down like that, but the infusion center at the hospital where i go in LA for my weekly needle change was closed. hello, hospital? and well, i needed it accessed because i had already removed the needle the night before as i do, so i can enjoy one cumbersomeless shower or bath or swim a week. so the deserted hospital was a real surprise! luckily i had an extra needle at home and lots of experience watching/training people how to do it. but let's just say there's a reason i've never done it before. namely, you need two hands. one to needle and the other to stabilize the plastic port device under my skin. well, i'm not sure exactly how the magic happened, but it worked! one-handed sterile technique and all. and honestly it was much less painful than the last couple of weeks of misfires at the hospital. and most of all, it made me feel the most independent ever!
october 1, 2011
tonight i watched the movie 50/50 and cried my eyes out. now i'm writing this entry sitting up at my desk at my sublet in LA where i've come to give the old phd program a go. soon i'll retire to my bedroom to do a small dose of ketamine and give my head and neck a rest, but for now i'm relishing in the moment of writing this post from an upright position. this is a first.
50/50 is about a 27 year-old who got a rare form of cancer that involved a tumor on his spine. yesterday i heard the writer on NPR describe how he lived and then wrote the story. i cried then too and made a point of going to see it with a friend because i want to pay attention to these feelings and feel them. i've been trying to make sense of my experience being sick now that i'm feeling so much better, trying to integrate where i've been into where i'm going, trying to find some steady ground between two worlds that continue to feel so surreal. i lived through something horrible.
and now i can feel that in a whole new way. i was living it, but really just surviving the pain and managing all sorts of medical trauma. and now as a slow parting gift, i have the bouts of depression i couldn't feel during the past years.
the worst of the worst of bartonella is over, at least for now. what a doozy! what lingers is some heart pain and racing, but i did a bummer of a test this week (a trans-esophogeal echocardiogram) to rule out infective endocarditis and at least i don't have that. the standing theory is inflammation of the pericardial sac, or pericarditis. most of the other pains and nausea lifted with more time back on a new cocktail of antibiotics to attack bartonella. i'm so relieved things turned quickly again and so grateful for my doctor and his team.
what i'm not grateful for is my other doctor experiences in the last weeks at acute care and cardiology. i've decided i should write a script in case i have any future visits to the hospital. i'll just hand it over before anyone gets carried away and they can read while i walk them through their whole routine - the doubt and surprise about me contracting lyme disease in california (but there's no lyme disease here!), the shock and disdain about ketamine, the confusion about co-infections (babeseosis?!), the total melt down if i tell them, respectfully, that what they know is not true, the blank stares, and that other kind of slow, concerned stare when i know they're considering if i'm actually just "crazy".
one thing that has changed is that i get some sympathy now cause my electronic chart is packed with a few years of medical bummers. on a bad doctor day, it means i get the "wow, you've been through a lot AND you're crazy". on a good doctor day, i got:
doc: "there's a medical term for what you've been through"
me: "oh yeah, what's that?"
doc: "that f-ing sucks!"
aw, so sweet!
two things running my mind this week...
one: the ongoing prison hunger strike that started in pelican bay segregation units and spread to more than 6600 people in 13 prisons across california. and the brutal refusal of the corrections department to negotiate basic demands with people who under torturous conditions have been forced to decide what type of slow death they will endure. some have chosen starvation. the state's neglect is despicable, the strength of the strikers unfathomable.
two: kenneth harding, a 19 year-old black youth who was shot in the back 6-10 times by san francisco police when he ran away from a streetcar when questioned about proof of payment. this young man was left to bleed to death as community gathered around screaming at the cops, demanding answers and medical help.
if kenneth was white and the police shot him in the back, i can only imagine the mass outrage and official political action that would follow. instead the state powers that be are making up stories and implying he deserved death because he was on parole (making not only prison but parole a death sentence). incidentally, the cops didn't know anything about him, including his parole status, when they shot him dead. all they knew was that he was young and black and may not have paid for his public transportation. the world we live in and the state we give power to is so brutally racist that it is normal for black youth to be shot in the back.
sometimes it feels like my heart will literally rip apart.
many moons ago (maybe march) i was late diagnosed with yet another co-infection transmitted from the original tiny tick i never saw. my lyme doc suspected bartonella when my spine pain persisted two years into treatment, so he tested me again (i tested negative originally) and i came up a strong positive. my immune system was too compromised initially to give an accurate read. let me also say it doesn't help that current testing has low accuracy rates and only screens for two strains of bartonella while there exists 26 and counting. so i've been on more antibiotics specific for bartonella for a few months now.
i was pulled off antibiotics for six days last week because my white blood count became too low and by the sixth day i was limping on my left leg for pain in my knee, i was exhausted for no apparent reason and my head was aching. i was thankful to be able to go back on the drugs that day, and two days later i landed where i lie now: in bed with a throbbing frontal headache (new location!), constant nausea, shooting pains in my knee, shins and feet, more heart and chest pain and a heart rate that jumps from 50 up to 120 when i sit up, slowly.
in my stupor i did a little research about bartonella, something i ignored earlier because i was finally on a consistent path to feeling better. i figured it couldn't be that big of a deal because of my progress. i remembered that my doctor also suspected bartonella over lyme when i was bed-ridden again in the spring of last year. bartonella has a shorter bacterial cycle than lyme and so the potential of relapse off antibiotics is quicker. i was also resistant to the idea back then. no more infectious disease diagnoses!
well, it turns out every strange new symptom i've felt crashing in this week falls into the category: classic bartonella. throbbing shin pain? it keeps me up at night. i learned it also kept soldiers in WWII up, writhing in pain. it turns out some of the best clinical studies done on bartonella came from observing those soldiers. trench fever, they called it, aka bartonella quintana. can we say testing infectious diseases on soldiers? the strain i tested positive for, bartonella henselae, also causes cat scratch fever (another reason to avoid cats!). what's weird is that this week i'm showing all the classic symptoms of bartonella quintana too.
what's also weird is how quickly my life just turned again. awesome to awful, just like that. i know that's reductive, but in the spirit of reducing things to make broad observations, that's just the facts, ma'am. i'm rolling with it, trying not to future trip and trying to get the help i need to get through this and get better. but it sure is a mind trip. i had just decided to go to LA in a month to try out that phd program, even though it felt a bit rushed with my recovery and even though i'm feeling drawn to medical school instead. i was building in safeties, subletting not moving, finding the medical services i need down there. and i'm still pretending i'm on course, but what's actually happened is i've been thrown off course and i'm lying as still as possible in a temporary camp-out my friends have helped me set up to make it through the day.
i got in the ocean, minimally and carefully, but i got in!
i visited my friends in prison in chowchilla, we took an extra car so i could lie down, but i did it!
i went to my first lyme advocacy event!
i've been on hallucinogenic meds nightly for 10 months but NOW i feel like i'm on drugs. living life without acute pain is vibrant. i have room to notice and absorb so much more, and room to give more too. room to feel beyond pain without trying so hard. a break from needing to reach so hard around pain just to try to connect.
yesterday i was telling a friend in new york the good news, including something about walking on the beach last week and reveling in a pain-free moment. she said she had a hard time believing my pain-free was actually pain-free. i laughed. my spine was feeling great, i said, but my feet and shoulders were aching from the full-body tendinitis i picked up from a bad drug reaction last week. she got a real kick out of that.
so there have been some bumps along the road, including more mystery heart problems, but i'm not kidding about feeling a million times better.