throwback thursday – 13th diagnosis anniversary.

13 years ago today i received 3 letters that would both alter my path on life and change my image of what i thought the word “sick” meant.

this post will be pictures. & only pictures. because i want each and every person that comes across this to see me as a person first, living with an illness secondary.

ive decided to share pictures only from a year or two after my diagnosis on, because those pictures are a great and terrible beauty. and also, ive lost them. (a blessing, really).

the pictures im sharing now, are either immediately before, during or after hospital stays – keep in mind, this is over the span of 13 years. some of these pictures, ive never shared with anyone. a picture’s worth a thousand words, right?

i turned 30 this week. my Crohn’s turned 13. 13 years of flares. 13 years of infusions, injections, transfusions, pills, dollars, tears, friends, jobs. 13 years of advocacy.

ive never seen Remission. 13 years is far too long.

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want to dedicate $30 to my next endurance event to celebrate 13? click here to help us find a cure,..so that one day, ill be able to cross a finish line with better quality of life, better medications and treatments and hopefully, one day a cure.

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#purpleproject

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 

Undiagnosed: A Story of Purgatory, Part 2

I’m going to knock on any wood available surrounding me right now.. because it’s now April; a time for seasons to blend & transitions to make us feel brand new.

January didn’t start out great & February was not what I expected to say the least. March? Things got worse. I am not that person that says “well Jan & Feb & March didn’t go as planned were shit, is this really how my 2017 is going to be!?” But I am also not the person to sit back & wait for things/watching things happen. So far in 2017, it has been an extremely painful “hurry up & wait” game, and my patience has thinned with each moment.

Between my Neurologist, my Gastroenterologist, my OB-GYN, my Rheumatologist, my Opthamologist, my Primary physician, my Endocrinologist, my Proctologist… one thing is consistent. None of them agree with one another.

Here is a wall ||||. (here is me). Here is a rock O.

In January, I had to undergo some routine tests & procedures; one of these procedures included a spinal tap. To be honest, I don’t think I experienced any pain. maybe a 1/10 & I think this is mostly because of the way science has advances. It was smooth & easy and only took about 1/2 hour – normally they are very short, but my site would not stop bleeding. After they got it to clot, I was back in my room & had to stay a few hours, per hospital instructions. When I left radiology after my spinal tap, I did have a little headache, but it was mostly because of the lights. After waiting, the headache got better and I got to go home. I had to lay flat for about 12 boring hours. Overall, a quick and painless procedure.IMG_0121

Until about 2 days later. I began puking & couldn’t see a damn thing unless I was in the dark. I couldn’t sleep, but when I did, I woke up with a worse migraine. Around 1am, I decided I needed to be seen. I was told by the on-call Neurologist that he will put in orders to get a blood patch done. He quickly explained that it was a simple procedure from taking blood from a vein & injecting that blood into my spine where the spinal tap was done.

When I got to the ER, I was given pain meds, a lot of anti nausea meds & many bags of fluids. Then the anesthesiologist came in & explained the process to me. “Shouldn’t take more than 5-10 minutes, then you have to lay flat again.” Okay, I thought, since the spinal tap was a breeze compared to scary stories you hear!

There was 6 people in the room, including my anesthesiologist & 5 nurses. With this many people in the room, I was a little overwhelmed but they were very kind. He explained the process that he would be giving me an epidural and then injecting blood straight from a source that has not been used by another IV. Since they had a hard time getting access to my veins already, they were smart enough to ask which vein is strongest when I need it. I told them, and they inserted my IV for meds in a different location so they could save the good vein for access to take blood directly from the good vein & hand it over to the Anesthesiologist. Here was the tricky part… Every time the nurse(s) went to grab something, they would contaminate the source, contaminate the vial or contaminate a key piece of equipment that needed to be 100% sterile. 

What should have been a short procedure became painful and verbal. The Anesthesiologist went over the procedure 3-4 times before we started, to make sure everyone understood what to do. Each nurse had a task to complete & everything had to be sterile. One of the nurses kept taking off a pair of gloves and contaminating things, because she forgot/didn’t realize how to de-glove. All the while, two needles are in my back & I’m sitting over the ledge of the bed against one nurse that was responsible for keeping me as still as possible when the needles went in.

It wasn’t easy, but about 45 minutes later, we were done.
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If you aren’t familiar with a blood patch, it is often used in patients that develop “spinal headaches” after spinal taps. Not everyone gets them, but some people get them immediately following their tap. It’s caused when spinal fluid finds a way to leak out, causing the pressure in your spine to change drastically. They took a lot of fluid out, and that’s why you lie flat after the procedure.

About 1/2 later, Doc came back in my room and asked how I was doing. I wasn’t great. Usually, the blood patch immediately “cures” spinal headaches, but there are very slim chances you can develop a spinal headache from getting the blood patch done. I did. They believed in addition to the spinal headache, I developed a migraine mid way through my procedures, especially the epidural, so I was in for a long few days. I spend the next week in & out of the hospital trying to get my vomiting, nausea & pain in control.
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The epidural caused awful pain in my hips the morning after I had the epidural and I cried every step I took. I loathe going to the emergency room, but I had no choice.

Fast forward a few weeks & enter Botox – the answer to my prayers that I had been waiting for my insurance to approve since June. I thought this was my end-all answer to finding relief. I was given a piece of paper regarding the shots at one of my many Neuro appts, but after we were done with my first set, he realized after looking through me chart… that hey! this is my first one! Ugh.

The next day, I woke up in unreal pain in my neck. Though the injections themselves were a bit painful, the unreal pain in my neck lasted for 2 weeks. It wasn’t fun.

When I went back to the doctor to find out my spinal tap results, I found very little answers. I haven’t had my follow up MRI yet, but just before I went back to the procedure room, I had a CT scan, and from what I was told, that appeared normal! That meant no meningitis, no blood infections that they were able to see. (more to come in blog 3.. just privacy & things that aren’t confirmed.)

During my follow up, I was sweating. I had a headache at the time, so it was hard to focus. I asked him to please walk me through my scans, since they hadn’t been discussed with me in at least a month. He explained that it takes so long to see things & grow things out in the lab, I may not have any answers any time soon. But I was so relieved it wasn’t anything systemic, like meningitis or something else. When I asked him straight forward if this means that I don’t have any type of Neurologic disorder, he was quick to say, “I don’t know. These things take a lot of time; in the lab, in testing & especially letting them grow out.” Gee, that’s reassuring.

Then came side effects of Botox.

The migraines I’ve had since I’ve had botox have been the worst yet. Almost immediately after my injections, I was unable to see small things in front of me. Words on a computer, the newspaper, a book. I even worked on coloring books to see if that would help train my eyes to focus a little bit better. I called my Neuro & panicked. “Go see an eye doctor. This is not Botox related.” I disagreed and was very stubborn about it. I know my body better than anyone else. My Neurologist disagreed with me when I told him that I believed I was having a side effect from my injections. I could not see words, I could not focus on anything in front of me & I was terrified. When I went to the Ophthalmologist, I had very blurry vision that day & had no idea how that would affect my tests. They took a lot of different pictures, and did tests that were very hard to focus on/read. They wanted to make sure that there was no inflammation in the back of my eyes, so they dilated them over 3 times, making me completely freaked out. I waited about 15-20 minutes alone in my room before I got very panicked. Up until then, it was only my close-up vision that was affected. When my eyes were dilated, it looked like the entire world was what I had been seeing IMG_0118when trying to read text. I became very panicky and started to cry. I was having a panic attack at the eye doctor’s office.

My vision is still an issue. I am wearing readers in order to see objects close up. I wear them 24 hours & if I don’t have them, I’m in a panic.

Then came more hip pain, the foggy disorientation & side effects of new RXs. some were scary. I’m finally in the last 1/4 of bumping my med for tremors up. The end is near.. but the pain & tremors have also increased. Also, I’ve lost bladder control 2 times in the past 2 weeks – I mean, 30 & flirty, right? More like almost 30 & I should be in a Depends commercial.

My hips have had more episodes & each one gets worse. My neurologist has a lot to try & fit in my appt on Monday. While most of my results (lab grown) have not finalized, I’m trying to breathe & think I’ve done pretty damn good. I have supportive people around me. Andimg_1373 after my last fall, I gave my neighbor a key to my house if she hears something or has a bad feeling… it’s made me laugh because one day I was hanging a picture & was hammering into her side of the wall & she snuck in & I laughed so hard. I’m so thankful for her to be willing to help with things when things go wrong. I’m blessed that her background is similar to mine.

And just when you have waited hours, days, that turn into months & years.. you hear what had feared all this time. & in that moment, I wished I could go back in hours, days, months & years.
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Thrush, kidney infections, pneumonia, pleurisy? Leave & stay away.

An answer..? More elaborate than you’ve ever imagined.