If you have a chronic illness there is always the lurking question of where it begins and you leave off. You are always facing issues of how to go about making room for it to fit in your life. What stays, what gives??? What are you? At some point in the process, your worlds begin to collide and you are faced with the overwhelming and monumental task of reframing your identity. A job worthy of the best spin-doctors D.C. has to offer. Why even worry about that statement? its semantics, really. Just words that strung together start to define how we view ourselves. Married. Single. Professional. Patient. Whiner. Survivor. Winner. Loser. Each of these labels really can inform how we view ourselves and our place in this world. For the most part, one spends the fist 20 years of their lives figuring our what these words mean and the next phase of their lives trying them, seeing what feels like the best fit, which work the best with the other pieces in your personality wardrobe.

There is always an element of choice in how an individual chooses to wear these “clothes,” which outfit to put on any given day. The process of learning to live with an illness is really just like life, a path of constant learning, mistake making and facing challenges and if you are mindful of it all, reaping their rewards. You are thrown curveballs that you must catch and react to on a constant basis. With an illness, to keep with the wardrobe metaphor, you are essentially thrown a ill-fitting, ugly, messy overcoat that you come to find yourself, through no act of your own, forced to wear everyday for the rest of your life. But, in the end, you do find that what doesn’t change is your ability to accessorize, camouflage and coordinate it with the other pieces that actually never left your closet in the first place.

granted, I'm, only 36, and it's sort of weird to say out loud, but I've been retired now for over 5 years... for 8 years i worked in a gallery in Boston, the best contemporary art gallery, i was the director for about 5 or so years. it was fast paced, glam, crazy,and i loved every minute of it. i decided i wanted to be in the art world when i was a sophomore in college, after my second art history course, i just fell in love and never looked back. i spent 2 semesters away from college (union college in Schenectady, NY) interning in the art field. fall of my junior year in London, (my favorite city, i would move there in a minute) where i worked in a contemporary gallery. they hated my English accent and gave me voice training lessons before they let me loose on the phones, it was priceless... such a life altering experience
senior year my best friend from high school and college (i was so lucky, she was with me at both) and i went to new york, for our "life in the big city" experience... i worked at the Whitney Museum as well as a research assistant-for an art critic who was writing a book on Jackson Pollack (i was put in charge of collecting the 411 on how Jackson Pollack was connected with Communists, it was during the MacArthur trials) such rich experience. really, those two years cemented my knowledge that i was heading for a career in the right place for me, the art world was a great fit for me. i loved the combo of culture, politics, sociology (my other major), people and obviously i was gaga over the art. i could not get enough of looking at art... so working at a gallery was a riot, kind of like getting paid for my hobby:) but, believe me, it was real, hard, career stuff. i felt so lucky to have that job and i had the most amazing boss. she is famous and rightly so, has the best personality, every woman wants to be her and man wants to be her best friend...
i loved meeting/seeing all my regulars of the collectors who would come by on Saturday to see the monthly exhibitions, check out any new work we got in, or in lots of cases, we would be working directly with a client to address the needs for their personal collection, be it finding thing to purchase at auction or searching out a blue chip artist such as a Warhol print they are looking for such as a "Marilyn Monroe" image to add to their collection." whatever, i loved the work with clients. particularly when i went to their homes, sometimes it was because they wanted me to get a sense of the room, or a feel for what would work, what they already had, i.e. the "personality of their collection" and what would work... often, i swear i spent more time hauling furniture around and doing room make-overs then hanging art sometimes!
anyway, after over 7 years of doing this and rising to the director with a staff of 4 reporting to me, it became a real challenge to keep up my days which consisted of meetings with clients, at their homes as we previously talked about or at the gallery, where i would show them work and often that could take hours, which for me was so much fun. but, as time wore on and i became sick it was hard to be on my feet for long periods and seem perky, etc...
i had to keep up with the correspondence with clients as a result of the meeting i had with them and what images, slides, newspaper articles about the artist i had promised to send them, etc...
not to mention the other end, dealing with the artists, helping them deal with their new work, selling it, or not selling it and feeling guilty.
throughout me whole tenure at the gallery, i was so, so lucky to have a boss who was someone who was way more then just my boss. she was my mentor, the person i aspired to be like one day and looked up to for good reason. she has such a way with people that to this day i have not found any other person like her. she was my friend, my teacher, my confidant, and my shoulder to lean on as i dealt with a diagnosis of lupus - she could not have been more supportive.
one story that illustrates her is how she showed up at my first hospital stay with a special down filled little pillow and beautiful cover that made my bed instantly glam. she is like another mother for me and i will never forget the impact that she had on my life. ,
i was lucky. i know that so many of you are not and your bosses are not supportive and that sucks. i was so lucky to be able to arrange my hours as in got sicker and work out a part time schedule. i know that many of you do not have that option, but i urge you to go to HR if your company has one and see if there is a flex plan available so that you can premptively rest, which is the KEY to working with an illness. i will definitely write more about that later, i have so many strategies about working while dealing with an illness, taking up brain space that i will write them down soon...
i digress, back to summing up my "life/work story."
unfortunately, 4 1/2 years after my diagnosis i had to retire. it was a very long and torturous road to that decision, believe me. i tried working part time, coming in for only a few hours at a time, often i would be out of the gallery for months at a time after i was in the hospital with a flare, but i kept at it, hoping to make it work. it was my dream job, i couldn't believe that i had it so early in my life, but ultimately i just couldn't make it work...my dr. and i decided that for my health it was the best decision to leave and focus on it... at that point in my life if was THE MOST DIFFICULT decision i had ever made. walking away was so sad and the only way i could handle it was sort of by going 'cold turkey" and still to this day, i can't really be in the gallery, or any gallery for that matter, without thinking about the career that i had to walk away from.
i try so, so, so hard not to complain and be all "why me, poor me-ish," but the yucky fact that having to live with all these chronic illnesses cost me a career that i loved, is really sad and believe me, i did lots of mourning over it. but, ultimately it was an extremely smart decision. now, when i have a bad day (pretty much daily,)i can sleep and deal with it and i don't have the heinous guilt of having to call the gallery and tell them i wouldn't be able to be in that day. while i knew that they understood, it killed me to do it and whatever i was dealing with physically that day, i added an ulcer from the stress of worrying about what was going on at work while i was gone...not that they couldn't handle it, of course they could, but the guilt of letting people down, is the worst, worst thing for me to do. that is what stops me from being able to do any "work stuff," as i just don't know how i am going to feel on any given day when i wake up, let alone in the afternoon!
fortunately this disease gives me lots of practice in confronting this issue! how very, yes i go to see my shrink once a week of me!!!
ok, enough about me, I'm sorry i went on so long about my old career, but as you can see, i still miss it.
thanks for listening, take care,
Jules

for me, and i would assume anyone with a chronic disease that entails lots of doctor visits, there is nothing worse then seeing a new one, a dr. that you have to explain your whole life story to, well, i guess, your whole med. history to be more accurate... personally, it's so stressful to have to deal with a doctor who is not on my medical "team."

this "team" is a group of dr.s that i have carefully culled together over the years, believe me, there was lots of bad "dates" before i found the "right one" for me, i guess finding your gastroenterologist (insert your own "ologist" here) can be likened to a first date...you tell your story, open yourself up to extreme vulnerability, while you are sitting there in your paper dress... anyway, it's hard. such a far cry from the doctors you know and who know you well, know your history -- what you've been through. etc... obviously i am writing this with my personal perspective, but i have a hunch that many people feel the same way when dealing with new dr.s... the best case scenario is when they turn out to be compassionate and empathetic, brilliant and helpful... that is great. balloons fall out from the sky and glitter is everywhere when that happens, i love it and can't stop smiling for days when i meet a dr. like that who can help me and who "get" my situation and offer me some hope. sadly, more often then not, i run into lame, totally detached robots..., the complete opposite of empathetic healers, machines who are devoid of any human emotions...

that stinks... i find this most often when i'm in the hospital for periods of time and forced to deal with residents who have yet to develop any and i stress the word any, bedside manner. they are more often then not, walking and talking versions of computers who intake your 411 without any emotional output. it's just so crappy, because at that moment you are your most down and a hand on yours or a kind smile and an offer of a compassionate shoulder to unload some of what are obviously real and hard issues would mean so much. but, i must make myself very clear here. there are definitely doctors along the way who are the way they should be, the "new old school," the kind who take the time to look in on you after all their rounds, just to hang a little, crack a joke, look at your pictures... these doctors are really doing hard work. not just the clinical work that they can separate themselves from after a day at the office, but taking the time to walk a mile in their patients shoes and it is an extraordinary thing that makes all the difference.
luckily for me, my rheumatologist, my primary doctor, is exactly this kind of person, even though he has a young family, when i'm in the hospital, even for weeks at a time, he comes every night and stays for about 30 minutes, just checking in with me, making sure everything is all right,ironing out the days creases, offering his shoulder for my inevitable vents, kleenex in hand, our years worth of private jokes about hospital and sick life at the ready to put a smile on my face...
whenever you are lucky enough to come across a doctor gentle and caring like this, scoop him or her up and try to get them to be on your "team" and in time you will have your own private offensive line-up for when the medical world's clueless and indifferent doctors put a damper in your day...
take care always...
j

i dealt with that the other day and believe me, all i could do was cry, when i got home and composed myself, it all was easier to put into perspective, see the situation for what it was. however, when you are in it, Kleenex sometimes are the only option...

i've been married to my husband for 7 1/2 years now and there is a part of me that still thinks my friends and parents are paying him monthly. he's that fantastic.

he proposed to me in the hospital after knowing me for 9 months, (this 2007 new year's was our 9th anniversary of when we met)and since that moment, it's been a love story through and through. he is my prince charming, my rock, my chief care-giver and my go to for venting and saying over and over again the same things that i hate most about being sick... the miracle of our romance is that it is one. with all the sickness, pain and suffering and general kvetching that surrounds me, we have somehow managed to find a way to keep things light, fun and romantic even. since i've been diagnosed, i've been in the hospital for about 30 times, each visit lasting on average a week to three. he's there each night after work, curling up with me on the twin size hospital bed, we watch baseball or stupid cable movies and make it fun and as normal as it can be. i think that is a key thing.

the honed ability to just go with the flow and act as normal as possible in your relationship. have the faith (or lack of faith in faith, whatever and however you want to feel, what a loaded word "faith" is, i will definitely be getting back to that later...)that your love will prevail and just go with whatever happens but go there together.

we have a deal that we worked out way, way in the early stages of out relationship, which was that i had to be ultra honest with him about how i felt at any given moment, no matter how hard i wanted to blow things off, or disregard my feelings, symptoms, etc. he wanted to be on the same page as i was so he could be there for and with me, and because of that rule i think we are stronger for it. it's just one of a 1000 strategies one must employ to make a relationship work when one person is well and the other is fighting an illness, but i am here to tell you, 9 years later, it can be done.
summing up, i guess the ole' words of wisdom of honesty being the best policy has withstood time's test for a reason.

i was going to title today's blog, "fear of crying wolf," and as i wrote i realized that it was exactly that worry that i was trying to hone in on and it was exactly that act that i should not have angst about, if i'm being true to myself and my partner... if you have an honest and real relationship, be it with yourself, your friends, family or a special someone, reality and honesty have got to be central when dealing with illness or else it just won't work.

for instance, i've just come off of a week of feeling like roadkill. tonight as i laid in bed waiting for my husband to come home, brain pulsating with pain, my stomach and lower back radiating intense throbbing and stabbing pain from my pancreatitis, i felt like, G-d, enough of this, complaining to him yet again for the 7th day in a row almost felt like i was crying wolf... however, it was just the opposite. by letting him inside and telling my partner how i felt was the right thing to do. it was being fair to our agreement and honest about our life as it was at that moment in time. the romance came when he stood by my side of the bed, ginger ale in hand, kissed my cheek softly, turned down the lights and told me, as always, he was just a shout away.
i realize. believe me, that i am perhaps the luckiest person around. my husband is like an angel sent down to take care of me and it doesn't hurt that he can cook and looks like rob lowe as well!!!!
yes, i am plagued by having a lemon as a body, but my heart and soul could not be more nourished and cared for. all and all, i think i fall firmly within the lucky camp of life...
be well, jules

there is a quote that the famous contemporary artist Jenny Holzer uses in her work that reads: "remorse in advance is efficient."

i first came across that quote when studying her work in college and those words stuck with me and i sort of used that supposition as a guide to live by... ironically, my career out of college was being an art dealer at a contemporary gallery in boston where we showed Holzer's work and there was a plaque with that same quote right above my desk...(i got too sick to continue with my career and had to retire at age 27, but i digress, more on that later.)

anyway, what i wanted to say tonight, was that when you are suffering with a illness, there are so many things to worry about at any given time. you can choose to let thoughts of death and dying overcome you, insidious daydreams of what life will be like if you become sicker, the side effects of this and that medicine, how your close family and friends are dealing with you and your situation...
all these heinous worries most likely are with you in some level, conscious or not, at all times... however, you hold the power to let them in to your brain. it's all you.
as i said, i used to think that if i worried about everything in advance, i would be prepared for any outcome, then things, whatever they might be, wouldn't hit me like a ton of bricks, and i would be all the stronger for it.

however, finally, 15 years later, i can safely say that i think that truism as Holzer called her quotes, is not good. at least for me it isn't. there is too much stress involved in all that anticipation, too much anxiety that is more often then not, all for nothing.

one of the first keys to understanding and managing your illness is to manage or better yet, eliminate any triggers if possible. worrying makes your system start it's fight or flight response, using all it's adrenaline in the process, leaving you wipes out and as exhausted as if you had run a marathon. the last thing you need to be dealing with on top of your disease.

of course, there will be and are, plenty of legitimate things that one has to deal with and worry about, and i'm certainly not preaching to you that you ignore all those serious issues... just bringing up a thought that you think about what is real and what is anxiety that you are creating in your own mind and try and limit the toxic effects of them. easier said then done i know, i'm still working on it myself bigtime!!!!!

my point in writing this blog is to help anyone out there cope with their illness as best i can, after being sick myself for over 13 years. i have learned much that i wished someone had taught me, so that i didn't have to learn it the hard way, and i will try to remember those lessons and pass them on. i'm calling this rants from the trenches, because i think venting and ranting are so crucial to dealing with the hell that is having an illness and who knows, perhaps having a blog in which to get it all out will become my new advance efficient remorse system...
be well, jgr