perception & icebergs.

(for a better reading experience, pop this blog up on your desk/laptop & grab a snack & come on back.. cause i’m bout to spit some truth.)

the past few weeks have been nothing short of emotional, unstable & a bit off track. but there have been plenty of moments in the last few weeks that i have felt support & love when i have needed it most.

i never expected to enter my thirties as unemployed & single, barely scraping by. but then again, i never expected to be diagnosed with something that would absolutely turn my world upside down exactly 13 years ago. thats right, 3 days after my 17th birthday i was given the “gift” of IBD. a 3-letter acronym for something i would come to know as a blessing and a curse. that acronym that would continue to follow me like a shadow through the rest of my life in the form of pills, procedures, surgeries, therapies, many, many setbacks and alternatively, opportunities to try and pick myself back up when things fell apart.

for 13 years, ive experienced complications from biologics that are meant to slow the progression of my disease, to keep my inflammation at bay & ultimately, try to reverse the damage that has already been done to my organs. for many of those years, denial was a friend of mine; some days, it’s my best friend lately.

for the greater parts of the past 3 years, ive struggled with many complications of “extra-intestinal manifestations“. ive also been diagnosed with several other related & unrelated autoimmune conditions as well as inflammatory conditions. it seems like IBD never wants to be friends with the others. when my inflammation in my body is finally settled, my Crohn’s starts to flare even worse. when my Crohn’s is very active, there is very little i can do to prevent my body from going absolutely haywire.IMG_0118 i develop ulcers, eye infections that can cause permanent vision loss if not treated immediately. my arthritis can be crippling & that, is an understatement. IBD has taken a toll on my skin, causing ulcers, painful scabbing/sores that take months to heal due to a suppressed immune system. my hair loss from the form of combined chemotherapies that are injected & infused makes my hair fall out; you might notice that it’s curly so you compliment my “natural curls” but what you don’t see is the damage and changes to my body that my therapies have done over a period of 13 years. you cant physically see the loss of bone structure due to long-term, big bursts of steroids, causing osteoporosis. complications that aren’t visible to the naked eye like pancreatitis, uveitis, kidney failure and delayed growth due to malnutrition. (and guys, you can still carry extra baggage living with Crohn’s disease or ulcerative colitis and completely lack proper nutrients and vitamins. weight loss and weight gain does not discriminate in autoimmune bodies.) when you add in other diagnoses, some you never expected, you can imagine the list gets longer and definitely scarier. when it happened to me, my body began to shut down on me & soon my mind did as well.

which leads me to my next point: mental health. a symptom, or consequence(??), one might say, of living with a lifetime illness. panic attacks, sleeplessness, worry and fear. and one day, it all comes crashing down in financial crisis, losing your first job due to health and worrying about not just the next few months, but how you pick yourself up physically and emotionally, to get through day by day & lately, hour by hour. because of the cloak of invisible illness, some people think they get to have an opinion on how or why you get things done, in the order you do them. some people want to silence you and your voice, even when asked, falls on deaf ears…. because let’s be honest: some people just don’t have as much compassion as you’d hope to see in the world. there was a post i shared on my public Facebook personal blog regarding the US healthcare bill and how it will factor into the way healthcare moves forward as a nation. the ONE post i put up resulted in at least 10 nasty messages i have forever stored away in my brain to help me fight my hardest when my friends are at their weakest. most messages were just filled with curse words telling me i should lay down in my grave for sharing political posts on my public HEALTH ADVOCATE blog. i even received a death threat. for telling the public about my fear of losing the right we call “Healthcare”. and how it would personally affect me if i lost my insurance. there will always be people that want to bring you down and spit at you. because.. they don’t live in “our” world. don’t let the trolls turns your embers into ash. refuse to be silenced.

IBD is no walk in the park. and recently, i’ve found myself figuratively sitting on a park bench, watching other people stroll by hand-in-hand, laughing, enjoying the gifts of life. as a passerby, their life looks perfect to me. but living with an invisible illness myself, i know that couldn’t be further from the truth. that mom playing on the playground with her 2 kids under the age of 6? she could very well live with an illness that causes her to feel miserable and unable to get out of bed due to degenerative pain, fatigue and anemia. but today, she feels well enough to be able to take her kids to the park, to give 110% of the energy she didn’t experience the past few days, due to a disease that people don’t physically see. you see, when somebody breaks their arm, it’s visible & people ask about it. they want to sign your cast, bring you balloons and flowers and with time, hopefully that break heals correctly. with an invisible illness, even mental illness, people don’t see what’s “broken” or in pieces. they don’t see the fear i have when i am walking to my mailbox, only to find another claim i’ve fought my insurance for has now gone to collections. they don’t see the 10’s of thousands of dollars of debt living with illness costs. they don’t see you choosing prescriptions over food. or vice versa. they take what they see (or want to see), make a judgement & quickly move on with their lives.

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we live in a society with social media and with that, comes the need for approval. browsing through many peoples social medias (yes, me included), we are a vain society. their starbucks cups, the “outfit of the day”, communities of runners, athletic, beautiful models who…. aren’t like me. “my” community is a diverse group of people who struggle with trying to find themselves through fitness, meditation or somewhere in between…. and illness. if we don’t see something on the surface level, we are to assume that everything is tidy & perfect within that persons small window to their lives.

being in the illness community for over 13 years, i’ve learned that this isn’t okay. because others aren’t able to see certain manifestations or symptoms of our disease, we feel that we have to be validated when someone says “well you must be feeling better” or “well you were able to do A or B this weekend!” the thing about autoimmune disease or any chronic health issue, is that if you don’t have it, you may never “get it”.

example A: can you tell that both of these were taken within 1 day of each other? both extremely ill, anemic, needing multiple IVs both days, could not walk or leave the house & had a wedding to go to the next day.

 

example B: having surgery & somehow finding courage to run my first 1/2 marathon 6 weeks post op:

 

example C: having not ate solid food for 3 months, attending a wedding in the attempt to prove to myself & those around me “i could do it”. i threw up in the bathroom for 20 minutes & made it for an hour that night. most of my attempts at normalcy comes at a great cost. i was back within the hospital that weekend.

 

i guess my point with only some of these pictures is that people living with illness CHOOSE what they want to share with people – in person, over social media, etc. what you don’t see are the hours spent in testing, the machines i go in and out of, the spinal taps & infusions that result in days and weeks of recovery. though it sometimes has the opposite reaction, my hope is that someday people will have a better understanding of WHY i run & hike & explore the outdoors when i can… and even when i’m hardheaded and cant, but do it anyway. people will choose to see what they want, but my intention is to be real & authentic, for as much as i’m willing to share.

on my bad days, i know that i am not able to leave the bathroom, due to a multitude of reasons – pain, cramping, rectal bleeding, fistulas, vomiting. it doesn’t end there. over the past year, i have made myself a fortress of pillows and blankets between the bathroom and the hallway just so i can hopefully make it to the sink or the toilet. over the last 4 months, there have been more times i’ve lost control of my bowels in public then in the last 13 years combined.

as a person with a healthy immune system, you may not know that the last three nights i’ve gone to bed at 5am, only to wake up in excruciating pain in my bones and my skin and my eyes an hour later. but somehow, over the course of a few years, my body has adapted to this lifestyle – this is my norm. on a good night, i wake up at 4:30am and start my day in the bathroom. the next few hours are spent between a chair, the bathroom floor & my closet floor. around 11am, my body slowly starts to calm down and i try to go about my day. there are days that this fatigue causes confusion, dizziness and syncope and overwhelming anxiety. on a good day, my body usually begins to give me a sign that it’s had enough & is shutting down, usually around 3-4pm. after that, if i’m able to sit down, fatigue hits HARD and its not likely ill be able to do much that night and into the next day.

a 30 year-old that goes to bed at 8pm in order to be awake at 4am to be sick – i say these things not for pity. i want to be transparent as possible because there is SO much i do not share with anyone else being in and out of clinics nearly 3 times a week. i don’t blog to be validated or to seek out attention – that never has been nor will be my purpose. when i started blogging, i wanted to be someone that i needed when i was diagnosed. our world has certainly come a long way in terms of resources, communities and avenues for those who are newly diagnosed to explore. but acceptance doesn’t come the day after you’re diagnosed.
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ill be honest, some days, living with an illness feels like an elephant that has sat on your chest. he doesn’t let you leave the house, he gives you panic-induced dreams when you are able to rest and he makes you fee isolated in the darkest of ways. he tells you “no one gets why”, “no one believes your pain, i can’t see it.” “no one will validate you for missing this – work, family gatherings, outings with friends.. and especially with food”. “no one cares”. and mostly… “you’ve let me down so many times”.

but then you find the people that understand. the ones who have experienced it & have cared for loved ones who suffer with a long-term illness. & if you’re really lucky, a care team that refuses to give up on you. a team (courtesy of Steph from The Stolen Colon) that wants to find answers just as badly as you do. if you’re young, you will find someone who is strong & determined enough to advocate for you. within those next few years, you’ll learn that being your own advocate is a choice you don’t get to make. you’ll come to know that even at your sickest.. your lowest, you must fight. fight for answers, fight for new therapies, fight in order to survive.

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reading my words, hearing them from my lips, passing my by in a public place.. you may never understand how or why i try to  escape my reality by pushing myself to extremes when i’m able to. & allow myself to push my body beyond barriers and limits of my dysfunctional life. my immune system decides what 80% of my day will be like and if that 20% let’s me feel normal, you’re damn right that i’m going to push my limits. people without illness really have a hard time grasping that i can go from this to this or this to this within 48 hours.

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my simple explanation will likely never meet your standards & i’m okay with that. because i, and no one else, live inside my body & know when to push the limits. to feel like a normal person. to try and get a taste of what being a fully-functioning adult really feels like.to live for a day without blinding symptoms that take away my ability to go outside of my home and actually do things a person without illness can do without having to put any thought it. the difference between those with and without illness is simply knowing that expending a certain amount of energy one day, may or may not paralyze you the next. and that is my life with IBD; uncertainty of how i am going to wake up each morning and deciding how or when i can use what little energy my body allows me

in my next 13 years, i hope that the man i will someday choose to love will see and accept me not for my curse, but as a blessing. i don’t want to be seen as my illness & i’ve also learned that i do not need verbal validation how sick i am or have been, yet pretend to be a normal functioning human all at the same time. i want to be seen as a wife, with a compassion for serving others, with kids at my dinner table, in a house that i own, with a dog sitting next to my front porch swing. i want to cross a thousand finish lines without raising money to find a cure for a disease that will be in full Remission, with hopes of being so much closer to a better quality of life with this illness. my hope is that in my lifetime, i will see better therapies, better care & more compassion to those living with illness – both visible and not so visible. i want to be healthy enough to take care of my family, be able to conceive children if God has this in His plan for me and i want my life to be more meaningful, grateful and full of.. well, life.

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something very beautiful happens to people when their world has fallen apart: a humility, a nobility, a higher intelligence emerges at just the point when our knees hit the floor. – marianne williamson

for information regarding extraintestinal manifestions, visit:
Very Well -What Are the Extra-Intestinal Complications of Crohn’s Disease?

http://online.ccfa.org/site/DocServer/Kim.pdf?docID=25687 

supporting a loved one with chronic illness – guest blog series (Mom)

by now, its safe to safe that my parents have a pretty good understanding of my struggles living with chronic illness. ive struggled for a long time being the only one in my immediate family that has the type of disease i have. no one is perfect & it would be unfair to expect them to understand every single level of what it is to live with a disease with no cure. understandably, there is a certain aspect of chronic illness that parents must face. its not just patients who deal with physical and emotional struggle. no parent wants to watch their child go through such a physically and emotionally demanding journey. countless times ive heard my parents say “if i could trade places with you and take away all of your pain, i would in a heartbeat.” 

at diagnosis, they witness physical struggle of their child’s body attacking itself. some feel guilt, as they are unable to control anything watching their children lie in a hospital wasting away. during treatment, they see their children being sedated, poked, biopsied, screaming in pain. watching helplessly, it is no wonder many parents of chronic illness patients deal with anxiety, depression and isolation. there are times when i am unable to verbally tell my parents im struggling with something, and in turn, it comes as anger or fear. sometimes it takes an angry outburst for me to even realized im stressed out about something. luckily, my parents do a great job of realizing this anger is unintentional and have been very forgiving to some of my anger.

in any given period of my life, there has been 2 people by my side, giving my unconditional love, support & encouragement through some of the most challenging moments in my life. if there are any two parents who deserve a gold medal for being the most deserving of the “patience” award, it would be my mom and dad. now that im back home, im less hesitant letting them know what i need help with. one week, it may be giving me a hand changing my sheets because it would take me an hour knowing how much my joints and muscles hurt. as a parent, i can imagine its a good feeling knowing that youre still needed even when your children are grown, and over the past year, ive really tried to let them know what kind of support i need instead of leaving them in the dark knowing im not feeling well. its still hard. i think it always will be. take steps walk 2011

ive asked my mom to give a perspective of my journey and some of the things we’ve gone through as a family. this is the beginning of my guest blog series, from the eyes of a parent:

“Kelly has been “special” since the day she was born. She was two weeks late and had to be induced.  She didn’t wanna face the world I guess.  After only an hour of labor, she came in kickin and screamin; our beautiful baby girl.  To be honest, she was a “she devil” from day one.  She was collicky baby.  The youngest in our family, with two older brothers, close together in age. She was always sick. Always.  She was hospitalized for virus when she was barely three months old.  She had casts on her legs, she had asthma, didn’t sleep thru the night(still doesn’t), didn’t require require much sleep, trashed and wrecked and ruined everything.  This is not an exaggeration!  She was destructive, she bit other people and we even caught her sneaking out back door as a toddler in middle of the night. She was always singing and talking. She was smart and vocal. She was a bossy and sassy little girl. (wonder where she got that from).

Looking back, I think we should’ve known something wasn’t right with her, but couldn’t pin point it.  I remember her getting lots of belly aches, not uncommon in our family, as irritable bowel syndrome runs in both sides of my family.  She missed functions, the graduation of eighth grade of her brother, family functions, & parties.  But not till junior in high school did we realize this was something more.  She went on cruise with family friends, and was sick the entire time.  She was sick before she left as well, but we thought just a bug. By the time she got home, she couldn’t keep anything down. We tried everything. We went to doctor and emergency rooms so many times. Test after test after test.  We heard “she is depressed” or “it’s all in her head”, or “its just stress”.   Listening to your daughter screaming at the top of her lungs as the ER doctor gave her her first ever cervical exam, we knew something was wrong.  We couldn’t touch her without sending her screaming.  If you so much as tapped her, it sent her thru the roof in pain, everything was so painful.  After going through one surgery at hospital for an ovarian cyst, the most wonderful Doctor in world came out to talk to Jim and I. This is same Doctor who literally carried her to wheel chair in his office and wheeled her himself down to hospital.  He said what we were afraid and knew already; the pain and all other symptoms were not at all related to the cyst.  Her bowels exploded in the operating room.  He knew then to call in our life saver, Dr. Ravi Kondeveeti.  He was GI specialist who really, saved her life.  He told us he thought he knew right away what was wrong with her.  After two weeks, in Intensive Care, after many, many tests and medications, we took her home.  She fainted in first half hour she was home).  I know she doesn’t remember most of this, as she was so very, very sick. 

Since then, she has had surgeries, injections, IVs and medications that have many, many bad side effects.  They don’t work, or if they do, they last for only a while.  As parents, it is very frustrating and breaks our hearts to know this is something she will live with forever.  I wonder if I passed this on to her?  No one has Crohn’s or colitis in our blood family, but our sister in law, has it. The only exposure we knew. She had it bad, had surgery for colostomy even.  She is a terrific role model for Kelly and doesn’t let anything get in her way. 

Is chronic disease expensive?  Hell, yeah!  Needing to come up with family deductible January 1st every year!  All the Dr visits, hospital stays, medications, broke the bank..  Now that Kelly is on her own, it makes me angry and sad to know, she will have tremendous medical bills, and we can only help so much.  We are lucky to have such good family support.  Her brothers have always been protective of her, it was actually touching how so when she was hospitalized. 

Many people don’t know about these diseases.  People say stupid things sometimes. I will never forget a friend of ours saw her steroid face and told her she’d gained quite a bit of weight, making fun of the way her face looked. Most people in the family and her friends, do know about the illness and are understanding.  Her sense of humor and potty  and poop mouth, are hysterical.  Her humor has had a way to get us through tough times hasn’t it? 

I hope and pray someday there is cure found.  Realistically, there are things she may not be able to do with this disease. Kelly may not have kids. She is terrified of passing this gene on.  She may never get married. It takes someone really special to handle this disease. She may never own a home, did you ever see her bill folder?

But…….  she does have an incredible sense of humor, a willingness to educate others on Crohn’s and Colitis, a strong will, an attitude that is so inspiring, a smile that melts your heart, a never ever give up attitude – tomorrow will be a better day attitude!  She is always researching and educating herself and others.  This may knock her down at times, but will never knock her out! 

Love you Prinnie!

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i love you, mom.