OVERWHELMED

right now i'm sitting at my dad's computer with tears streaming down my face, listening to the melancholy, mature-beyond-her-22-years music of norah jones. i'm so stressed out, upset, worried, and overwhelmed. this should be such a happy time of the year and in many ways it has been a great christmas. i've tried hard not to let it be overshadowed by my own suffering and the issues i'm trying to resolve. now though, it looks like i have an added source of stress.

a couple weeks ago i wrote that i'd had a bad day. i'm finally ready to explain why. my parents came over (i live in a town an hour away from them, where there is a major university medical center and teaching hospital)to visit me because my dad had an appt. with his cardiologist.

a few years ago he found out during a routine check up that he had a heart murmur as a result of a previously undetected valve malformation which has led to aortic stenosis. his primary physician told him he'd eventually have to undergo valve replacement surgery but it wouldn't be for many years. other than that, my dad is a very healthy man who has never been heavy, never had high blood pressure or cholesterol, no diabetes, all of that....each year he's had an annual echocardiogram but this past june, just before i left to spend time on the west coast, he underwent a cardiac catheterization to get a more detailed glimpse at the status of his valve deterioration. everything looked stable and okay and the cardiologist said that he "wouldn't need surgery for a long time to come if ever" (exact words). our family breathed a sigh of relief upon hearing that news and i felt reassured.

a couple weeks ago he had a six month follow up with that same guy and we heard a very different story. the cardiologist told him he needed to have the surgery soon. it sounds so irrational, but i found myself feeling resentful and pissed at that doctor. it's not because he's the bearer of bad news. rather, now that i've had two weeks to process the information,i realize i'm so upset because it's an unexpected contrast to what i heard in june, and also because of the way in which the doctor's brusque, blunt manners turned our household upside down in a panic. i mean, i absolutely think this guy is a competent clinician, and his assessment is no doubt accurate. but this is where it really pisses me off that so many doctors have such poor communication and interpersonal skills. doesn't this cardiologist how important it is to carefully phrase statements to patients? especially regarding diagnoses and serious medical procedures? he wasn't the least bit soothing. doctors need to realize that what they say has an enormous impact on their patients, in addition to a ripple effect on a patient's loved ones (in this case, that includes me). maybe i don't make a whole lot of sense here. the cardiologist said that my dad should "do it right away", and said stuff like "why do you want to put it off? do you want to die?"

in some ways i understand why the doctor said those things but he also needs to realize that when someone is told they need to have something as major as heart surgery, they need time to process the news and prepare for it--not only physically but psychologically. although my own illness isn't one that required anything like surgery, i do clearly remember how i first felt when i got the first label of "chronic fatigue syndrome" AND how i felt when i finally got an accurate diagnosis. i clearly remember the pain, anguish, anger, fear, relief, and uncertainty that accompanied the words "lupus" and "arthritis" two years ago. although i hadn't been feeling well since 1994, it took time for me to process this newly revised diagnosis and i think i'm still taking it harder than i ever imagined. for the longest time, i was howling in my own inner pain.

my dad knows that he needs to think about when to schedule his surgery. i've observed these past couple weeks that he's been really contemplative and a lot more worried and stressed than he lets on. it absolutely tears me up to see him like this because he's an incredibly strong man, and i can't stand the thought of him facing something this scary. and the truth is that the thought of him undergoing open heart surgery scares the shit out of me.

i'm at an age where a lot of my peers have parents who are starting to get a taste of age-related health problems. i don't know if i'm ready for it. i guess one never is truly ready for stuff like that. but i feel it evermore acutely because of where i am in life. 28 and grown but with a chronic illness that leaves me in a position where i still have to ask for help sometimes from my parents. it's hard for me to have to ask for help at an age where i shouldn't have to. like asking them to drive me to johns hopkins hospital, or at least accompany me on my trips to the rheumatologist there for emotional support. (i also don't enjoy baltimore because the 3 hour drive is tiring for me AND because so much of the town is ghetto). i truly don't mean to offend anyone by saying that, but from what i have seen, the only parts of baltimore that are nice are the inner harbor touristy areas with the seafood restaurants, museums and aquarium. the rest is bleak, and parts of it remind me of a combination of the southside of chicago where it's all industrial and carcinogenic, and filled with railyards; and kind of like the part of seattle south of safeco that you see when you drive over the west seattle bridge, again with lots of train tracks, shipping yards, and industrial stuff. i sound so lame, but i have this fear of being carjacked or some shit like that if i drive through inner baltimore alone.

i don't know what i'd do if anything bad happened to my dad. he's been an integral part of my support system (as have my mom and sister and my wonderful friends)thoughout my illness. in fact, i remember he was always there for me whenever i was sick or hurt as a kid--like the time when i flipped over my bicycle handlebars and got scraped up really badly because i was trying to show off and didn't see where i was going; or the time i got really sick and needed emergency medical care in a strange and foreign country where i didn't know the language--how he carried me in his harms and hailed a taxi and spoke through an interpreter while i was screaming and crying out from the excruciating pain in my belly. i don't know what i would have done if he hadn't been there for me with his calm and soothing presence, and also his quick thinking.

i want to say that i'll be strong and that i vow to be there for my dad at a time when he needs my support the most. i'm just surprised that his valve has deteriorated so quickly within just half a year. there's so much uncertainty as we don't know if he'll need surgery in a month or if he'll be able to wait until later in the spring or summer.

sometimes i wonder if he didn't mention that he started to have some symptoms out of fear that it would add to my stress and send me spiraling into a flareup of my condition. i really do worry about the detrimental effects of this added, unexpected stress just as i feel like i'm starting to rebuild my health via acupuncture and a higher dose of plaquenil. as it is, i'm still unable to shake off a cold i caught over a week ago (my 2nd within a month). instead of getting better, it's descending into my chest and i again have a constant temperature of 100 and i'm incredibly rundown, bruising easily, and my proteinuria has spiked up again.

my sister came in for a week, and it was so good to see her. she flew out yesterday and it feels so empty and i feel so alone now w/o her here. it's just me and my parents. i hadn't seen her since this summer and sometimes it's hard to have her 3,000 miles away when all of this is happening. we've always been really close but it's hard with the three hour time difference and the fact that she's a surgeon and keeps long hours at the hospital. so when we chat on the phone i don't want to overload her--especially on evenings when her happy hour was interrupted all because some little kid inhaled a peanut, or some kid was helicoptered in from alaska or idaho in respiratory failure. (it was amazing spending quality time with her this week though and i'll write about that later).

anyway, she brought her stethoscope so she could hear dad's heart murmur. last year she let me listen to it, and she let me listen again this year and i was shocked to hear the difference. it scares me so much.

we talked some about banking blood in advance so that he doesn't have to receive a stranger's blood during a post-operative transfusion. i am seriously considering being his blood donor if i'm allowed to, and i told my sister this. she said it's uncertain if they'll approve of my blood simply because i'm still slightly anemic, and because of autoimmune antibodies. plus she warned that if i drop below 110 lbs. they won't let me donate.

i feel like i've been so self absorbed and shallow in obsessing about my weight. it's a much deeper issue that that and yet other people might see me as shallow. i sometimes worry that i'm offending strangers who read my diary and are a lot bigger than i am. if you happen to be reading my page and are one of them, please know that i'm not trying to upset anyone. anyway, maybe this will serve as a wake up call to not obsess about getting to 105 lbs because it would disqualify me as a blood donor. besides i know that each time i start fixating on the number on the scale, or measure my waist with a tape measure, i'm flirting with danger and am playing a game that can have serious consequences. on christmas eve when we had a big discussion, my mom warned me that if she sees me continue down this path she'll confiscate my scale from my apartment and the one in my bedroom here at my parents house, and lock them up. (i don't think she seriously meant it but it was enough to jolt me).

i'm not sure what i'm trying to say here. there are a million thoughts flying through my mind and lately, i've been so emotional--the highs have been so high and my lows have been so low. i don't understand what's happening to me. my acupuncturist reassured me that it's normal especially considering how longstanding everything has been--that it will naturally take longer to bring everything into balance.

just writing about everything has left me drained, emotionally and physically. but as always it's a much needed release. i'm so grateful to have a diary. i have a good relationship and communicate well with my family and friends. but especially now, especially as my family experiences the stress and worry surrounding my dad, i think it would be inappropriate, and a disservice for me to unload all of my worries fears and to share my stress with them. it would just run them into the ground and wear them down. right now i just want to have a glass of wine and go to bed, cry myself to sleep...