Crohn's

sisterly love ❤

It's been a while... lots has been happening, though not on here... Happy It will translate soon! Had a yard sale last week that was a big push to get several month's worth of purging round up out the door. Feels good in here now, echo-y even... and there is room for energy to move around. I am down to the last few piles of paper to sort through, and while the remainder are not perfectly organized and archived by any stretch, it is good enough that I will be able to move on from this massive project to other important things that have been waiting for me. Hurray! I have come across lots of amazing and special gems in this archeological dig of Val, and this is one of them found tonight, an essay written by my Sissy in high school... sniff sniff! Thank you Sissy, you are the best Sissy in the world and I love you!

tttt

Comments

this sucks.

This sucks. This talented young man just graduated from Penn and announced his wedding to his fiancé, who also has Crohn's Disease. http://www.phillymag.com/announce…/jessica-leva-zack-seigel/

They met at Crohn's and Colitis Foundation of America Camp Oasis, a special place near and dear to my heart, that provides a safe place for kids to be around others suffering from the same illness as them (and have a blast while feeling safe and accepted!).
https://secure3.convio.net/ccfa/site/Donation2;jsessionid=E34293592B1B0E2EB2462DB72F7060BE.app321b?df_id=16402&16402.donation=landing

Zack died from lymphoma, a known side effect of being on medications for Crohn's, including the one I take. My heart is breaking for his family and loved ones. http://www.thedp.com/article/2015/01/former-rower-dies-of-crohns-disease-and-lymphoma

I am often amazed to see how similarly people with my struggles feel, probably because I'm usually in my own bubble for protection... A few quotes shared on Zack's fiancé Jess's page that I too have lived and breathed many times over:

"Everyday I am reminded that our life's journey is really about the people that touch us." - Stuart Scott

C.S. Lewis once said, "Friendship is born at that moment when one person says to another: 'What! You too? I thought I was the only one."


Zack and Jessica, a beautiful love story
1376990_10151662221381883_628789520_n10891967_10203760062630262_8067632813681276074_n

Comments

the yesterdays.

Today I tell a true story, to a live audience, with no notes, for 12 minutes, around the theme of On The Edge, via the nonprofit storytelling organization The Monti. I have to tell you it has been a surprisingly cathartic experience! I had a good friend help me cut things out of my story, because it's way too hard to do yourself when it's your LIFE! She helped me realize I already knew the story, very well, and just needed to tell it the way I would tell it to anyone in conversation. The actual story and narrative do the work, not the words- pretty cool! It's a shift of mediums for me, as I'm more used to writing, and it's been a good challenge to step out of my comfort zone.

The gist and moral of the story, is that through a process of shedding yesterdays, I am slowly but surely more able to live in today. It is the story of overcoming 25 years of chronic illness that I write about here, and this site has helped prepare me to tell it.

The image below is a slate wallhanging that was in our house growing up in Upstate NY, and I've always loved it. It's now in my living room, and I just noticed it when practicing my story. It reminds me of home, because we had a big beautiful white birch tree in the front yard, and the cool, heavy shale is from that region. It's perfect ... read aloud, meditate on, and enjoy!


yes
A blurry shot of my sister Katie, cousin Julie, and I horsing around in the birch tree Happy
tree

Comments

Renaissance-y.

I wrote these scraps of thought on the go, and as I'm coming back to it, I'm just leaving it as it came out- its simple enough to make sense (mostly I think? Winking).

I wanna be a success story- for others to look to. Here's why I'm pushing through fear, self-imposed boundaries, junk, and overcoming barriers and obstacles to expand my contribution. My favorite quote explains it all in a nutshell (fear of success):



Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness, that most frightens us. We ask ourselves, who am I to be brilliant, gorgeous, talented, fabulous? Actually, who are you not to be? You are a child of God. Your playing small doesn't serve the world. There's nothing enlightened about shrinking so that other people won't feel insecure around you. We are all meant to shine, as children do. We were born to make manifest the glory of God that is within us. It's not just in some of us; it's in everyone. And as we let our own light shine, we unconsciously give other people permission to do the same. As we're liberated from our own fear, our presence automatically liberates others. ~ Marianne Williamson

I had my fortune read for me recently, this summer. It was cool. Tarot cards. I got a hermit card for the one that was "behind" me. Since then I've found some connections to this hermit hiding idea. I have to be honest and say that I have been hiding somewhat, in my house, in my life. That is coming to an end, and it's a strange process. Its awkward and messy at times like learning anything is, but ultimately I'm doin' it... Happy To be vulnerable means to be able to be loved. Without even knowing it, I had built up little walls around things, keeping people and things out. Its insidious. Safe. They were stripped down, and had crept up again! Its been an intense few years, and its understandable that I went into turtle shell protect mode. But its time to peek my head out- the coast is clear.

What this "coming out" of hiding is allowing me to do, primarily, is be there for my core best friends/family. It's really touching for me to get my head out of my ass and see that there are people who actually need me! A huge gift that I did not realize because I was only thinking about things from my own, tunnel-vision perspective. Sad

So the way I see it I have two choices:

1) Old way- hiding (hermit). I drew this quote yesterday at a dinner party: "Nothing is more capable of troubling our reason, and consuming our health, than secret notions of jealousy in solitude." ~ Aphra Behn. I wasn't sure what it meant until my friend pointed out it was the hermit concept. Oh! Man.

2) New way- move forward. Be who I am. Be afraid and do it anyway. Do it BECAUSE I am afraid.

Once you know another way, its pretty much impossible to go back anyway. We still do it, but it really sucks and we feel guilty for doing it. Its worse than not knowing! Ugh. OK, for you non-conceptual thinkers, I know I am losing you. Happy But bear with me!

I have been calling this period my Renaissance. It has been the summer of love, the summer of freedom, summer of facing reality, summer of discovery, summer of the creative and the brave. I can hear the universe whispering to me, saying "it's your time now, child." "Go be your full, rainbow-ific self!" People are being put in my path that support me and my philosophy, and that want to help me. Looking forward to seeing what happens next!


Fear-Redmoon

Comments

world IBD day- may 19th.

Today is World IBD (Inflammatory Bowel Disease) Day. I honor this day and raise awareness by sharing a little bit of my story. I salute all survivors and those we have lost... their fight was not in vain! I was diagnosed with Crohn's Disease at age 12. It was a very scary time, I lost so much weight and hated having to drink Ensure to try to keep weight on, and remember feeling embarrassed on the school bus when it spilled, and at school... This was the beginning of my "hollow leg" syndrome; I could eat and eat and nothing stuck, as I was not able to absorb nutrients. I took my special milk and lactose free food wherever I went and I tried to learn what it meant to "take care of myself"... but that was really hard at that age. Back then I didn't know anyone else that had this, and I felt different and couldn't yet see the beauty in that. I was in remission until age 16, when I was out of high school my last year for a month. I was overwhelmed, very sick, down, and scared. I'm so grateful to my loving family, friends, and teachers who gave me hope and loved me unconditionally through that period and in all the years of struggle to follow. I will always remember my teacher Mrs. Davis, who very strongly told me that "I need to learn to ask for help"... (I desperately hated to be a burden to anyone- this chronic disease is very challenging and greatly impacts the support system of those affected)- that was one of those life lessons you never forget.

I was proud to graduate from college, enduring hospitalizations each year for a week or so, usually each fall and spring, where I crashed from exhaustion and rested my digestive system on IVs. When I felt OK, I pushed like crazy, because I was always scrambling to live the life I wanted in my head, and felt betrayed that my body had other plans and kept me from my dreams and desires. I had so many dear friends and family lift me up at U of R, and U of A... Jennie do you remember sneaking me out of the hospital in my gown, IVs and all, and wheeling my wheelchair across the street to Bruegger's Bagels?!! Laugh I was so hungry... was I addicted to gluten back then or what?! I have always been close to my one and only Grandma, but she was my rock when I was ill and always came to visit me in the hospital (when my family lived far away) and supported me emotionally. Hammy, Cori and Caity (my most favorite nurse!)- I am forever in awe of what you did for me back then, and continue to do. Crohn's is an invisible, inside disease- "but you don't look sick!" is common. Oftentimes the better I looked, the worse I felt! Skinny, porcelain skin... what's your secret? Trust me, you don't want to know my "secret".

I continued to decline over these years, and things reached an all time low when I was in Austin, TX- I did everything under the sun as last ditch efforts to try to get better: special diets, many alternative therapies and conventional treatments, but I was rapidly declining and nothing worked, and many of my systems were failing. I had surgery in Dec. 2002- four feet of intestines removed, holes in my bladder and abdomen repaired, and a fistula- it was a 4 + hour surgery, things were worse than they thought when they got in there. Thank you to my parents and Godparents for waiting for me during that grueling time and being there when I woke up and in the months to follow. Long recovery process, and then later that year I had a C.Dif infection from the hospital stay, which almost killed me too- I took a month to recover and visit 4 medical centers in North Carolina, where I discovered many new allergies I had of all kinds, and decided to move here in 2003. The C.Dif, ironically, brought the Crohn's back, and I didn't get to experience any disease free years as I had hoped.

A rectovaginal fistula appeared in 2005 (horrifying and so difficult to treat), and I met 2 incredible doctors that year, Jade Teta and Keoni Teta at the
Naturopathic Health Clinic of North Carolina, who helped me get started on slowly turning all this bad news around. They were the first doctors I went to that had anything positive to say to me- whenever I went to any doctor (and I've been to a million) it was always, "you're our worst patient," most severe, no cure, nothing we can do, etc etc. I can't tell you how many doctor's offices I've left in tears. I am beyond grateful for the Teta's coaching, encouragement, love and support at the right time in my life. I volunteered for Camp Oasis, a camp for youth with IBD, in 2006 and had an incredible time. The fistula returned in 08-09, and I went on a liquid diet for six months, along with other healing remedies, and was able to get things to improve greatly (to where I had my first Crohn's free colonoscopy ever!). I volunteered at Victory Junction Gang Camp for children with chronic illness for IBD week during that time, and though I was tired, I was incredibly lifted up by strong young women who were worse off than me, and it gave me powerful perspective. I had a plug surgery in 2010 to repair the fistula, which had a 20% chance of working, and IT WORKED! My posse wore "It's Gonna Work" buttons for 3 months while we nervously waited (even my surgeon!). Since then that has been one of my mantras in life.

In recent years, I've continued slowly on my upward climb to restoring health (I don't even remember what it was like to be completely healthy, it was that long ago). Hypothyroidism came in 2011, all those years of adrenal exhaustion, and near daily chronic migraine in 2012. I feel sure of connections between these things and am working to puzzle it all out, while also trying to focus on the positive and get busy having a life. I am almost twice the size of when I was at my sickest, which means I'm absorbing my food much better and am so much healthier overall. I'm extremely fortunate in light of what so many others go through, and I know this. I have had several second chances at life, and I'm humbled to be here. I drink lots of concoctions, take a zillion supplements, and have to work at this daily, constantly reminding myself I'm not like everyone else (which is hard because I always wanted to be "normal"- whatever that is!). I have finally started this website, many years in the making, where I write about my journey, the impact of Crohn's and life.

Thanks for reading, and taking the time to learn a little bit more (
http://www.ccfa.org), and maybe watching this dance from these guys... Because you have to smile! Happy https://www.youtube.com/watch?v=A0sOFTCz4ck

mice

Comments

birthday girl.

Today is a great day to be born! I love my birthday. My family has always been big on celebrations and holidays, starting with my Grandma in her home when her girls were young, and filtering on down throughout our lives. My family made us feel very special on our birthdays, Valentine's Day, Easter, Thanksgiving, Christmas, with lots of gifts and positive attention, and of course delicious and made from scratch favorite foods.

After the health struggles I've faced for most of my years, I love my birthday even more because I'm on the up and up for once, and I couldn't be more grateful to be alive, truly, and to get a second chance to make this life count. I feel extremely fortunate to have been adopted by two incredible people on December 8th, and to have been so loved and well cared for. Birthdays are important ways for me to celebrate life, and all the special people that are in it.

I'm giving myself two gifts this year- sharing this website with the world and letting others in, after many, many years in the making, and a rainbow tattoo, which has also been percolating for a very long time. Stay tuned for updates on that process in the coming weeks!

My favorite birthday photo- I remember it sitting on my Dad's desk- Apalachin, NY, circa 1981?
VS bday

Austin, TX, December 2002, last ditch effort to save my health before surgery- eating a homemade
special diet "cake," weighing 90 pounds- my most fragile birthday.
val bday 2002

sdfsdfphoto
After my group birthday dinner tonight, my mom said to me: "You can tell a person's character by the company they keep, and you have a great posse." Well, I couldn't agree more about my amazing posse! And I KNOW that they help improve upon my character. Grateful!

Comments

25 years of Crohn's.

25 years of Crohn's. Woah does that sound heavy looking at it in a sentence, in word form. So concrete and data parametered, defined. There's no hiding from numbers.

Thing is, numbers don't mean much to me, just swirl around in a survivor's haze, and I peek my head out now and then to come up for air. I feel young and "behind" and just waking up, which is why I always describe the experience as Rip VanWinkle-y. Nowadays I'm hitting my stride more and it's so exciting. For the first time, I am living my life from a stronger platform, getting to make informed choices and experience the present more fully. There are still plenty of challenges, of course. But I'll take these struggles any day over all the rest.

I think about what has kept me going, and even though at first glance my aesthetic may appear fluffy and over the top with all it's cheery rainbow goodness, it runs deep. The motto came to me at a time when I was having my first relapse of Crohn's and was out of high school for a month. I felt like I was dying, and I had to rely on the small things to keep me going. When I received a love note from someone that said "It takes both the sun and the rain to make a rainbow," it clicked. I didn't always like the fact that there were hard times, and I was 16- quite a dramatic and tumultuous time. The phrase has taken on deeper layers of understanding over the years for sure, and I can look back now at that streaky blur of an existence I had, clinging on for dear life while the wind blew me sideways, and see that rainbows
are roads between dreams- those rainbows during the dark times kept me hanging on and believing that there was a higher purpose. The roads have been long, 25 years long some of them, and I am weary sometimes. But I continue to trudge the road of happy destiny, because these roads are leading me to my dreams! It doesn't matter how long it takes. Being on the road is the journey that is important to where I will go and the dreams I have, I now realize. Those roads and walks are making me who I am: strong, funny, mentally tough, appreciative, grateful, tenacious, persistent, dedicated, sharp, competent, knowledgeable, my own Chief Medical Officer and health case worker/manager. I know stuff! People come to me for advice.

I remember visiting my cousin Guy in England and talking to him about his job- he is a private investigator for Scotland Yard, which is like the Brit's version of the FBI. I used to want to be in the FBI as a special agent (until my poor vision shattered those dreams!) and I was enthralled by his work, and wanted to know how I could sign up! He laughed and told me that I needed to put in my time as a beat cop for 20 years first. Wahhh Whannt Whaaaa.... that was a letdown! Happy But I think of it now seeing this magnet on my fridge below, and feel warm inside knowing that my connection with rainbows is something to the core and almost indescribable (yet I still try) - somehow I knew as a kid that they were placeholders, transporters to other dimensions and places (a la Rainbow Brite) and that I could rely on them to get me safely to the place I needed to be, when the time was right.

photxddo

Being a bone fide child of the 80's, I LOVED Rainbow Brite. I can vividly remember Starlite's (her horse) clomping as they trotted away on a rainbow bridge that they made appear with stardust to go help or save something. I always wanted to stand on a rainbow like they did, and still do Happy

rb-and-starlite-rainbow-brite-263731_300_236

Paint a Rainbow In Your Heart
If this doesn't make you smile, or get stuck in your head the rest of the day... Happy
https://www.youtube.com/watch?v=cMLJ3JJOBFs

Comments

ten years gone.

It's hard to believe that it has been ten years since I've moved from Austin, TX to Greensboro, NC, this Thanksgiving weekend in 2003.

I had extensive life saving surgery for cumulative years of severe Crohn's disease in December 2002 in Austin, which included four feet of intestines removed, a hole in my bladder repaired, and a fistula repaired. My immune system was completely shot at that point and I was very weakened and susceptible to other difficulties, and it was a domino effect in the worst way. I recovered the best I could but it was not ideal conditions, looking back. 2003 was a hell of a year.

I developed C. diff (Clostridium difficile) from that hospital stay unbeknownst to me, and muddled through work for months wondering if this was how I was supposed to feel. I drove myself to the ER after my ankles swelled up enormously one day and my co-workers feared something heart related, parked in the front, and didn't come out for a week. I also developed a sulfite allergy that summer, and had another trip to the ER as my throat closed up listening to R.E.M. at the 2nd Austin City Limits music festival!

While on disability from work for a month recovering from the C. diff and everything else, I came to stay with my family who had just moved to NC and made trips to Duke, UNC Chapel Hill, Wake Forest, and Johns Hopkins. I was glad I did because at 3 out of 4 places I got new answers to the various befuddling complexities I was dealing with. I discovered I had terrible latex and formaldehyde allergies that were breaking me out all over my body, and I had experienced an allergic reaction to Remicade, which was a newer drug at the time with side effects not being reported by its maker yet because it had been administered to less than 5,000 people.

At that crossroads, I remember weighing the pros and cons of moving from an amazing city that I hadn't really had a chance to fully appreciate or enjoy because I was too ill, to somewhere near my family that had many big medical institutions in close proximity. I was genuinely torn and heartbroken about leaving Austin (considered leaving my stuff in storage there), but ultimately decided to just pack it all up and come here where I had found at least some of my answers.

I had tried everything humanly possible to get well in Austin, but I was too sick ironically for any of it to have a chance at working. Painstakingly slowly, over this past decade in NC, I have had the opportunity to take baby steps towards getting well (two forward and one back), and have built up a dedicated health team army in the process.

As much as I've begrudged being "banished" here from the cool city to get well, incredibly, I do not regret the decision.

Just came across this sorting through files from that move...
photo
11.25.03 - back when photos had printed timestamps...
1463997_10151937466557935_812778015_n
Ten Years Gone.
10yrgone

Comments

val's in da house

So, it's back to the house. Teresa, my friend of almost 10 years (gulp- cannot believe it has been this long!!), and her beautiful daughter Skyler, have resurfaced in my life at an opportune time. They are thoughtful, funny, caring, hardworking and dedicated to a fault. Where I flounder and freak out in overwhelm, Teresa lays down the law and "gets it done." She is hardcore and actually accomplishes things and moves forward in life- what a concept! Laugh

For those of us that are Ns (iNtuiton in the Myers Briggs type indicator), we envy these results-oriented Sensing types. They DO things and are known as the masters of action and implementation, out there living life, whereas iNtuitives are more abstract in their worlds of ideas and reflection, and we may take F-O-R-E-V-E-R to actually do anything concrete... and may not realize it because being in our heads, making connections and philosophizing feels like doing something to us! Being pushed into motion feels exhilarating to people like me and I highly value the support of my friends, and the other fellow Ss in my life (my Mom and Grandma), even though we spar over this key functional difference sometimes of course.

Thanks to Teresa and Skyler, I am in motion again after a longer than I would have liked hiatus. We tackled ONE drawer, and then cleaned up and restored the place to previous order. Definitely not the way I would have worked if I was running the show, so I was very grateful for some guidance to keep me in check! It's great to have a team - Skyler very quickly shred a ton of old bills and statements, put things to keep in clear plastic sleeves, and filed folders. Teresa challenged me on items that I might have contemplated keeping, (mostly things years old that I haven't read, probably never will, and that are only making me feel guilty- what's the point of continuing to lug that shit around?) with "It's 2014 Valerie!"

Huh. You know, clearly, as strange as it sounds, I do not yet have a grasp of year or decade. It's that Rip Van Winkle syndrome thing I have from feeling like I've missed years of time due to survivor mode illness- I just feel like it's earlier than it is. This process makes me feel good because it gets me one step closer to the present, which is the real gift. Punny but true! We also made lists so I can cross off the drawers/boxes/bins/cubbies as I clear them, and celebrate my progress catching up! Incredibly, in doing just one drawer we uncovered some important and very relevant writings and other finds that will help support me on my next steps.

Goodbye 1997 John Cusack! It's been a great 17 years...
(I can't believe I got this when I was 19!! Now that feels like a long time ago...)
IMG_0062

Waking Life (Richard Linklater) movie rental, 2004.

IMG_0060

Super efficient filer and shredder Skyler at work
IMG_0063

1 drawer cleared= 1 bag of shredding and 5+ pounds recycling!
IMG_0065

Comments

thanksgiving.

We are all auditioning for various parts in each other's lives. Figuring out how we might best fit. Sometimes there is so much love there, and we just can't figure out how to make it fit (square peg in round hole). The beauty, I've finally realized, is in the noble trying. The fact that there is that much love there in the first place. I've been blessed beyond comprehension when I stop to think about it, how much love I've received in this life. Instead of focusing on how it hasn't worked, or why it didn't work, focusing on what that relationship gave me just fills me with gratitude. Things didn't work for a reason (sometimes more than one). It doesn't mean they didn't work, period. No, they had a purpose, and many of those loves are still in my life, still my dearest, most trusted and valued friends, because that is the purpose they arrived in my life for.

If only we could helicopter over our lives 10 years down the road and see the timeline, the path, as it should unfold, instead of stumbling blindly about every step of the way- we'd go, ohhhhhhhhh, I see! OK! I'm not gonna hold on to that so tightly! It had a beauty and a purpose even bigger than I could have imagined. Wow. But of course, the living part, not knowing where things may lead and trusting anyway, is what creates the depth of who we are. All of these relationships have made me better, and have slowly pushed me towards being the person I need to be. They have been a gift.

I talked to an old friend and his sweet family recently, an example of someone who tells it like it is and brings out the best in me every time we communicate. That is special and rare. We tell each other we love each other and it feels good and true. I know that I'm on the level with him, all the time, and he will go down in my all time inner circle club, always in my corner, fighting for me and cheering me on. He inspires me, and inspired this post.

Sometimes I feel like I'm going to burst with love thinking about all these special people that have graced my path. I was born with an extra dose of feeling genes and a heart on my sleeve, for sure. That too was for a reason, no doubt, which I'm working out now, day by day. I only see my story from these eyes, but these people I've loved have a story too, that I touched, and made an impact on as well. Maybe that is the reason I'm "special." Maybe I've given them wonderful things that they can't put into words. We don't think about things from other's perspectives- its too hard, its all speculation, etc etc. But why not? Why not assume the positive instead of the negative? If these people have had such impact on me, why not assume I have had the same for them? Just food for thought.

We could wait until someone dies to share how much we care about them. But why wait? Why not share what's on your bursting heart now? It feels really good. It's also contagious, and it grows on itself- giving is expansion, and when I give and share my good feelings, it makes me just want to do it more.

It feels like peace, and like I won't have the regret later that I wanted to but didn't. I'm committing right here to giving my all now, while I can. I've wasted enough time. I don't want to waste another minute. Will I be perfect? No. I'm gonna get out there and tell you I love you. Happy So look out!

Have I Told You Lately

Hammy (Brian) and I, Dec. 2002. Caption is from my movie "story" I did for a
support group (only copy of photo I could find at the moment). This guy has
been there through all my worst times for nearly 20 years, and
I'm very lucky to have him on my side now for all the good!

Screen shot 2013-11-25 at 8.40.16 PM
This picture also shows, at my sickest point - even though I hadn't had sugar in a year,
my teeth were still rotting out and yellowed- major systems were shutting down.
I'm unbelievably thankful to be here, and Thanksgiving Day is a hallmark for me.

Comments

on attitude & perspective

Attitudes are self-created. You are free to choose to be victimized by circumstance or people, or you can choose to look at life with an open mind and be victorious. No one else can choose your attitude for you. Your perspective and choice of attitude gives you the power to be in control. That is the essence of true freedom. ~ Irene Dunlap


This was one of my favorite quotes I hung in my cabin when I was a camp counselor at Camp Oasis, a camp for kids with Crohn's and Colitis. There were others too that I brought with me to decorate the walls and the girl's minds, wrote with markers on colorful construction paper that my mom and friend John helped me make, some that I still have hanging on my wall in my office below, reminding me of that experience.

I paid over $1000 to volunteer at this camp, all told, in the summer of 2006 in St. Louis, MO- now that is saying something! They say you should ask yourself what you would do for free, or if money was no object- and whatever it is, do that. I've certainly volunteered for a lot of camps over the years, so it will most definitely be a part of my what-I'm-going-to-be-when-I-grow-up plan!

IMG_6276 IMG_6275IMG_6277

Comments

survivor.

Being chronically ill can be extremely isolating. Since my Crohn’s has been in remission and my fistula plug repair in Dec. 2010, I’ve been slowly trying to catch my breath from 23 years of severe disease, with very little moments of respite in between. I started experiencing hair loss and what seemed to be hypothyroidism not long after, seemingly because of fatigue from living in survival mode for so long.

One year ago, I had my first aura migraine ever, and have experienced them nearly every day since. Migraines bring on GI symptoms, which can impact my Crohn’s - lots of vicious cycles in this delicate dance.


These daily struggles have kept me just doing what I can to put one foot in front of the other, some days, weeks, months and years better than others, and as a result I haven’t had the time or bandwidth to do many of the things I truly love- connect with my loved ones, and have fun. I’m working on this!

I have so much gratitude for my people who have hung in there with me whatever life brings. It’s a privilege to grow and learn together. Baby steps on the journey to happy destiny...

IMG_4333IMG_4328
IMG_4342
My loving Dad, Mom, and my one & only Grandma.

Comments

resiliency.

I work at a neat non-profit where we dream up ways to help others be better leaders all day. Mostly it’s just a job just like any other, but sometimes it taps into what is at the core for all of us-- how to be a better version of ourselves. How to get to know ourselves. And better yet, how to be our most authentic, best selves.

This is the part where my ears perk up as I work to embrace my true nature, from a time in my youth when I was truly just Me, before disease, popularity, fitting in, conformity, non-acceptance, jealousy, depression, loneliness, bills, jobs. I was pure curiosity and sheer joy, inquisitive, investigative, fun-loving, entrepreneurial, and had a true zest for life and all it’s details. I Lived In The Moment.

At work we were talking about a health & wellness component to one of our programs, and someone suggested that it be worked as Resiliency instead. I loved the ring of that word. It was only Tuesday, but the week had already felt 3 years long, with work weighing me down, boyfriend, friends, health issues, all seeming to reach pivotal stress points simultaneously, and I was feeling left with very little left gas in the tank. I’ve cried enough to fill a river this week thus far. I’ve given 110%, and was in a position to realize (again) that in the end, it is every man and woman for themselves.

When a friend of mine told me this years ago when I was literally on my death bed from this disease and feeling full of despair, as cold and isolating as that thought sounds, it actually gave me some power and hope. She is a very wise woman, my friend Lauren, who has been through many battles herself at her young age. It gives me a strange feeling of comfort to mull this over. Mostly because it is in such stark contrast to my usual sociologist’s desire for an interconnected, interwoven, loving, full-of-people and support based life.

It takes me back to why resiliency has struck a chord, probably mostly because though I need others to make life bearable sometimes, I ultimately only
need myself to survive at the base level. I’m not saying thrive, no. But survive. And that is an empowering thought, knowing I can make choices and do what is best for me, regardless of how it effects anyone else, make my decisions based on what’s in my heart, and climb any mountain I choose and breathe in the air from the top. I don’t need anyone else to tell me that I am a beautiful, wise, funny, sensitive (in a good way), happy, thoughtful, kind, loving, incredible person.

I’m more comfortable looking to the external world than giving these things to myself, but I’m learning. I don’t need someone to tell me that I deserve the best, everything life has to offer and more-- after all, it is the pep talk I would give to someone else- it is just old habits and patterns that have my mind defaulting to reject this.

If I keep the mantra in mind of “what would I say to my best friend?” when talking to myself, it is overwhelmingly insightful and powerful. I’m working on closing the gap. And supporting myself and my hopes, dreams, goals, visions and aspirations, all the while remaining strong and resilient.

re·sil·ience noun \ri-ˈzil-yən(t)s\
Definition of RESILIENCE
1:
the capability of a strained body to recover its size and shape after deformation caused especially by compressive stress
2: an ability to recover from or adjust easily to misfortune or change

Lauren and I before my surgery, Dec. 2002
Screen shot 2013-11-25 at 8.39.27 PM 1665
43512853666 piccsy.com

Comments

the transformation.

Ok, so I’ve told you a tiny bit about me and now I will share what I am up to. While this rainbow world is born out of wanting to document my struggles and triumphs over a twenty-plus year battle with Crohn’s disease, most of my time and thoughts are spent thinking about and doing other things, and I find it all sort of inexorably bound up together, such that I don’t know how I could have a single focus.

Rather, I see it more as a kind of lens which informs the rest of life I am involved in, and thus will share those other aspects here too-- and as the Brits say, you can like it or lump it, or as MJB
sayz, you can hate it or love it... what what!

The latest is trying to get my home organized. Oh boy.

IMG_0990 IMG_1010
IMG_1038 IMG_1063
tumblr_lzsu9nazVJ1qbmte0o1_r1_500 Laugh

Comments

1st episode.

Good evening/morning. I don’t know where to begin, except to begin, again... even though I’m starting now, it’s again because lots has come before but for various reasons has not made it to publish land. I bought a website with my name on it years ago, then thought better of sharing my gory life story on it for the whole world to see, so then bought this domain to spill the beans on instead. The about page will have more insight into the choice for this site... while the primary goal for this friendly cyber world of mine (never ever in a million years thought I would ever say I would have a cyber world!) is to share my voice with you.

For some reason I equate futuristic tech stuff with coldness, and since I am far from cold always distanced myself from this kind of thing. I know my world, cyber or otherwise will be a break from the norm in this respect. Anyhoo, back to the primary reason for starting this -- surviving and thriving with a chronic illness.

One way I procrastinate from progressing on this project is to allow myself to be overcome with feeling cliché about this endeavor, i.e. everyone writes their sob stories and we are over-saturated with this kind of stuff, etc. etc. but by doing this, I effectively deny MY voice. And that, I am finally beginning to realize, has been a shame. Because I have a lot to share. Regardless of who is touched by it, and even if I’m the only one who reads it, on here or in print or some other form-- it will still be of great cathartic benefit to me.

So for that reason alone, I must press on. Even if it takes me a century. Which is something that I like to beat myself up about; not cool! Moving in the right direction feels a hell of a lot better than sitting still these days, and so I shall ride on the back of friend-propelled momentum, and see where this takes me!

IMG_1067
This is a warm fuzzy! You pull a string out of it and give to someone else, along with a hug Happy I believe in the power of hugs! The saying goes- we need 4 hugs a day for survival, 8 for maintenance, and 12 for growth!
IMG_1001

Comments

coming around again.

The itsy bitsy spider... you’ll have to excuse me, most of the words that flow through my noggin are lyrics from a poignant song by Carly Simon, awash with feelings of familiar family nostalgia, heard so many times growing up, sung by a woman who’s voice and words always seem to ring true. I’m coming around again. Pain as a motivator. But only sort of. There are other motivators too, like the realization tonight that the reason this is the year (2nd year actually) of the nun is because I don’t need to be falling in love with anyone but myself. That is quite enough for one person to handle.

So, that is what I’m going to try to do. I’ve avoided it in one way or another for a very long time. But there is no going around it this time. It just makes me so darn sad, looking at pictures of a fragile yet unbelievably tough girl, feeling for a fleeting moment what others feel for her and see in her, and then quickly shutting that off, heaping up the compliments in the “compliment pile” for later reading, and most importantly, digesting. Why all the self-punishment? Is this the Charlotte Perkins Gilman Protestant guilt or some shit? It has gone on for long enough, that is for sure.

Yes, there is fear, and the fear of having to walk through that fear. And the fear of what is on the other side. But this is my journey after all, only mine, and only I can be the one to walk through it and see what it is all about. I owe it that much. So, here goes. I’m really glad you are here with me, holding my hand.

Val_101 - Version 2
owning-our-story.html

Comments