Undiagnosed: A Story of Purgatory

Because I’ve really needed a break from a lot of things around me this year, I’ve tried to make the best decisions that would only affect my health in a positive way. In making that proactive decision, there were many, many things put on the back burner. One of those things was social media; I decided that I would put a halt on what I decided to share with the public. In the times that I have posted, I wanted to make sure that I was as transparent as possible, but also keep private details confidential.

But truth be told, over the last few years, I’ve had a very hard time being transparent in whimg_0934at I choose to share with family, with friends & with coworkers.
Truth: a hard thing to live up to if you don’t know why certain things continue to happen without any education as to what it is, why it’s affecting me & if it’s something I should really tell others.

I struggle with so much of this, as there are so many things..symptoms, rather, over the last few years that have been happening with no visible or obvious cause. I’ve tried my best to ignore what I’ve been able to – to brush off not understanding what the hell is going on inside my body. I’m so much of an inconvenience with the diagnoses I’ve already had, that it’s really hard to talk out loud about anything. I feel like I’m an inconvenience in many relationships I have tried to maintain. But the truth is, if you don’t understand what’s going on with your body & live in a world full of anxiety waiting for the “what if’s”, there are not a lot of people willing to go out of there way to accept your faults (excuses) if you yourself doesn’t understand.

Living with the diagnoses I currently have, it’s hard to maintain relationships, whether it’s friends img_0946or family. There are very few details I share with anyone, because to be honest, it’s easier right now to live in denial of what “may or may not” be something.
I’ve had unexplained medical issue
s or incidents for years that have yet to be explained. If I do share, I feel like I get eye rolls, silence or no reaction at all. But the worst of all, is knowing there are whispers when I’m not there or when I walk away. The last thing I want is sympathy, and I think my closest of friends get that. I’ve written a bit about Empathy vs. Sympathy & to differentiate the two can be hard for some people.

img_0629But what about the times when I DO find myself reaching out? Most of the time, people don’t know what to say. So, they begin to be more distant, less in touch & their patience is worn thin. Slowly but surely, you find yourself on the “Uninvited” list. Do I blame them? It’s a double-edged sword.  I didn’t choose to be born with the disposition of developing autoimmune genes, so I can’t fully blame them for leaving when they didn’t sign up for “this”..

But what about me?

There’s a crowd of you that just read that & out loud said “What about you!? Isn’t this ALL about you!?”

Nothing about being sick is about me – about my character. Yet it affects everything around me. People who are quick to judge mostly say “well you must be getting some good rest!” No. Or “Well you’re filling out a little bit & have some color in you!” No no no. “Well it must be nice to stay at home & sleep all day.” I can authentically say that NO day home is a “fun” nor “relaxing” nor “restful” day. If I’m home, rarely there is a hug that I am not hugging the toilet or using it in some shape or form. On really fun nights, I have two special blankets I keep with me and just sleep in the hallway or even on the bathroom
floor – and yes, the bathtub has been a place I’ve crawled into, cried in & fallen asleep in.

A few weeks ago on a Saturday morning, I had an episode that was quite scary, but I knew I could call my neighbor. Thankfully, she was home. This has happened before, but in the past I have been completely been unable to move. This involved my hips & I couldn’t even try rolling over without screaming & crying. As she walked in, she saw that I was still tucked in the bed, on my stomach unable to roll over. (Thankfully, she had a similar background as mimg_1227e, but has since retired, so she could help roll me & pick me up.) She asked where we could start & I told her I couldn’t roll over on my own & that I needed to roll towards her. All the while I was crying. She handled all of this in the most amazing way possible. Once she somehow got me cradled on the bed, she asked what we need to do next. I told her I needed to go up the stairs and go to the bathroom. She helped me step by step all the way up the stairs and got me into the bathroom, as well as back down the stairs. when I say I couldn’t walk, I literally could not walk without the assistance of wall-walking and using different pieces of furniture to help hold me up.

This was a new threshold of pain I’ve never felt.. 11/10. After a few hours on the floor, I was able to get up again, but the pain was absolutely excruciating for the next 48 hours. In img_0577times before, I have woken up & my body has been paralyzed from my neck down. There have been times since, where symptoms replicate & mysteries grow deeper. When I was living in Milwaukee in my studio, it took all of my hands after an hour of laying there panicking, I was able to grab my phone with my fingers & ask Siri to call my good friend & upstairs neighbor. He picked me up all in one swoop & set me on my chair. I remember him trying to move all my limbs and stretch out everything I possibly could. That was the first time I was genuinely scared no one would find me. At the age of 22, I feared living alone – something that I will NEVER give up, as this is the only thing that helps keep me as independent as I can be.

Can you explain trying to tell someone, especially a friend, or even more important – a doctor about symptoms like these? I’ve had the most disrespectful comments & eye rolls. I can’t explain it, so how can I expect others to understand what I don’t even how to explain it? Does a normal 30 year old woman lose the ability to control her bladder during the middle of the night? How come I constantly shuffle, fall all the time & lose consciousness for a split second.img_0118 Nothing about any of this seems normal. Nothing about this is easy to explain to others and nothing about this is what I share with others. Over the last two years, I’ve come to fear “what’s next?” I’m on a teeter-totter of circumstances that never seem to keep my feet on the ground. The weight with my teeter never seems to match my totter. & it’s been hard to deal with. My pain never seems to adjust to anything. The times I’ve been to the ER for pain management, I’ve actually declined IV pain meds because I get violently ill about 12 hours later, because my body can’t take it. I’ve been told by two doctors that I my arthritis is autoimmune & 2 others that have absolutely no idea what’s going on with my body. All four I’ve seen have each had the same response “it seems like we need to get your Crohn’s under control.” Everythinimg_1373g in my body has an inflammatory response, so when I’m in an actual flare, my counts & levels actually show very little infection or inflammation, making it extremely hard for doctors to figure out.

Friends, this is purgatory.  I was ‘lucky’ to be diagnosed within 5 -7 years after my IBD symptoms actually showed. Some rare diseases take years, 100 different doctors & then specialists who of course, not covered by insurance. The only thing I feel lately is Fear & typically, I’m not full of fear. I’m definitely not brave, not a hero and not a perfect role model… I guess what I’m trying to say is, being in this position sucks, but I also know how many other people are in the same place as me physically & mentally, and knowing they are still “The Undiagnosed”….. sucks.

Becoming Visible: My Life with ‘Invisible Illness’

I am a face of “Invisible Illness”. I want to show you what one symptom of living with an “invisible” me is like, in hopes others struggling with illness, disease & the purgatory of Undiagnosis know “I see you” to give others insight what my invisible illness looks like. So let me take off my mask..

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I live with multiple Autoimmune diseases; often referred to “Invisible Illnesses” because these diseases cannot be seen to the naked eye. Because of this, many who are diagnosed with Autoimmune diseases, like Crohn’s Disease or ulcerative colitis, are not taken seriously because physically looking at me, you cannot see the physical toll the internal destruction and irreversible damage.
My invisible illness means taking upwards of 20 pills a day. Some of these medications include daily or daily injections, monthly infusions, etc. Some are so harmful, they016aa680ca304250b0560f8f52076eb0ac84a29bef must be identified as “black box” medications. This means death is a possibility and has been reported as the cause of death in some patients. I don’t say this to scare anyone, but medications for chronic illness can be huge decisions that can greatly impact your quality of life, not to mention your finances, social life, holiday celebrations & major milestones in your family’s life. it doesn’t show the anxiety of knowing some weeks I’ve had to make the choice of being able to afford groceries or medications. It doesn’t show the hundreds of denials from insurance companies, stacks of appeals my doctors and I have fought endlessly for & the major disappointment of never getting the medications I need in order to be able to save an organ. It doesn’t show you the thousands of prescriptions I’ve taken since age 15. It doesn’t show the guilt of failing multiple medications & never knowing when a drug that will work for you shows up. It doesn’t show the guilt, missing out on amazing opportunities & chances to achieve my goals. 

My invisible illness is located in nearly every organ: skin, small bowel, large & small intestine, rectum, esophagus, sympathetic nervous system, musculoskeletal system, deteriorating bones due to long-term steroid use & joints that begin to fuse together. You cannot see the obstructions in my intestine, the ulcers in my esophagus, the number of times I’ve thrown up, nor time spent on the bathroom floor writhing in pain. You can’t see the amounts of blood in my stool that makes me so anemic I’ve required blood transfusion. What others can’t see is an infection in my intestinal tract, the long-term side effects of small doses of chemotherapy injected weekly and monthly infusions. Invisible illness is blood clots, respiratory infections, sepsis, pancreatitis, exploratory surgeries, fusing of bones, inflammation of eyes, ulcers in the nose and mouth, insomnia, osteoporosis. it causes cancers, changes in weight, my skin, my hair & my self-esteem. It doesn’t show tubes, PICC lines, NG tubes or preps for surgery. It doesn’t show anxiety, withdrawal from friends or the lasting effects of PTSD many patients experience after traumatic & near-death experiences.

It doesn’t show the self-esteem Iose every time I look in the mirror and don’t recognize the reflection, wondering where the “old me” went and what, if anything, I can do to get her back. There are times my illness becomes visible. My eyes sink in, I’m visibly tired, swimsuvery pale. Sometimes I’m thin, making it more apparent. Rude, uninvited comments like “you look much healthier than before”, only to be left thinking “was I that fat before??”

20140213-191351.jpgIt doesn’t show the friendships I’ve lost because I’ve had to back out of plans, fun events and celebrations. It doesn’t show how hard it is to maintain a relationship with someone; the fatigue, the guilt of not feeling well enough to care for myself and the guilt knowing they may have to care for me,. Caregiver/Family tip: They may not always know what to say or how to offer help, but even offering to come over, sit with they & just stay awhile speaks volumes. A little help gives a lot of hope. Pain is incredibly lonely.5047f22d-b48b-41e5-863d-3b404bb8b64e

Despite my invisible illness, I’ve mustered strength to run a couple 1/2 marathons, educate myself & become an advocate for others. This past year, I was asked to be an Ambassador for an organization I have such great respect for. For nearly 4 years, I have been using the Charity Miles app, which donates to the Crohn’s & Colitis Foundation of America. It’s extremely rewarding to be well enough to train for endurance events, especially while training and fundraising for Team Challenge events.

Recently, I needed emergency care for my arthritis, so at 2am, I called the on-call Emergency Rheumatologist. I explained my situation and was brushed off and told to “just get through tonight”. I hung up the phone and sobbed. I felt completely invisible.you see, invisible illness isn’t just just brushed under the rug by common folk, it’s also invisible to some of our specialists – who challenge us & presume our pain “cannot be that bad”. You may be able to see my glassy, inflamed eyes with bags underneath them, but no one knows the struggle my insides are putting me through. Your own doctors & nurses do n’t understand the excruciating pain of what it means to be a patient living with autoimmune disease, trapped inside a body in which your cells attack your entire body. the cells meant to protect you communicate with one another fight each other instead. if we can’t get providers to understand the seriousness of our pain, who will?

01e658b86c12aad902753f3b75349acfe021bf17b9I struggle mentally, like many other autoimmune patients, with putting any biologic into my body. I’m weak, foggy & often sore and sick the next day. ask yourself: How would you
plan my week around which day I would inject? Would you do Fridays so you could rest/recuperate over the weekend?  would you inject Mondays so that by the time the weekend came you would be able to enjoy it?.. As someone living with an illness that seems obvious only to start to cycle over right away on Monday? Quite a perspective, isn’t it?

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What it shows is my strength, despite the odds I’ve dealt with, the redirection I’ve taken in stride & the pride I feel overcoming each flare I experience. Illness changes you. When we explain to others what it’s like to live with invisible illness we often say that our insides don’t match our outsides. We share our stories in hopes that our future will include more support & give others courage to tell someone “I’m struggling too “. Sometimes we just need people to simply be there, not analyzing our every move, not picking us apart because they don’t perceive our illness to be the level of “disability” which people won’t mock us for parking in the handicap zone, for using “the perks” of Disability Services on campuses, missing work to “sleep all day” or “catch up on talk shows”. We need you just to be here. Just be with us, even in silence, to just feel.. Visible.

XOXO,
jojo

thank you for being patient with me

to my friends, family & coworkers,

“thank you” – a two-word phrase that simply isnt used enough. & sometimes, it just doesn’t do justice to what someone or a group of people have done for you.

the past year hasn’t gone how i imagined it would have – after speaking at length with an old friend tonight, i found myself saying out loud what ive thought many times over in the past 12-ish years.. “chronic life means a life of the most unexpected things at the most unexpected times & sometimes this means reliving these moments over & over again”.

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ive struggled in some form since ive had my tonsils removed in June – just not able to catch a break with my immune system. one infection after another, some viral, some bacteria & then christmas rolled around & obstruction then major flare. it has been a very hard time going to bed, knowing there will be little sleep, if any – only to be woken up at 3am starting all over.

many “simple” infections that most folks get leave their bodies within a few days or a week & for me, they seem to last weeks. i get dehydrated easy, sick very easily & no matter how hard i try to control my environment, i end up receiving infusions or going to urgent cares & ERs because my meds are just not cutting it anymore.

much of the past 6 months, i have struggled internally with things that are going on with my body that i simply have no control of. i have been emotional, i have been crabby, i have avoided friends & family have been unfairly rude or mean to them at no fault of theirs. even during these emotions, i dont know how to express myself other than short-tempered, anger or mostly, silence. i have cried a lot in my car & the hardest for me – after an extended period of time bottling things in, i break down in front of others.

and then there is guilt. for MANY reasons – i havent been able to work full-time because of my Crohn’s & other diagnoses that have made things worse. i feel like a failure in much of my life lately – friend, sister, daughter, coworker, aunt. & id give anything to have my “norm” back… even if it means living the rest of my life with this disease, but on a level that i could at least have some type of control. because honestly.. im not sure why my “new normal” is yet – and that could change at any given moment with chronic illness. to my coworkers & staff: thank you for banding together & bring such an amazing team. please dont think i dont recognize and see (even when im not there) all of the things you have done not in your job description to help out when i have been gone. the texts you send, the patience you show me & the kindness & compassion you show to others is exactly why i want to serve others in this role. my goal for Remission is not only for my own health, but to be the best leader for you. thank you for your patience & thank you for doing an overwhelming amount of work during my times of absence, hospitalizations & treatments. nothing in the world can repay you acts of kindness, but i hope a Thank You is a good way to start.
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ive talked a lot about “patience” lately – the irony of this? ive lacked this quite a bit. i know some parts of this particular blog post are vague, but in time i will provide more information & answer questions to the best of my capability…. which leads me to this:

Thank You.

Thank you for your patience, the love you have shown me & the “thinking of you” texts, cards & smiles you give when you’re not sure what to say. i never want to make you uncomfortable, but i realize that some people dont know what to say (who does, really?) and that does not give me grounds to become angry or short-tempered aka – lost my shit quickly. its HARD for me to apologize sometimes, especially when i dont realize how ive acted because others dont understand my illness.. sometimes because we’re blood, i think my family should automatically understand me, remember what i can & cant eat or understand why i wouldnt want to sit at a dinner table & watch everyone else eat when i cant eat any of it. YES, i want to hear about your day, NO, im not trying to be selfish & have no interest about table talk, but im uncomfortable with it and find it hard to verbalize that i dont enjoy it. its not being selfish, its preventing me from breaking down crying because its another reminder that all i want to do is eat delicious food, but cant. thank you for giving me space when you can tell im in “a mood” – you may not know why (physical pain, emotional pain).. but since you know im an introvert, deal & cope in unique ways, youve come to learn i dont handle things as you, or most people would. thank you for your patience, recognizing my lack of it, but loving me anyway.

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it’s obvious that ive struggled – the past few months ive been short, quiet, even more introverted than normal & physically exhausted. i know that the ones who surround me most see this & have really respected my boundaries & have been great about not commenting on my appearance – how tired & anemic i look, my slow pace of walking, my stature & the way ive carried myself. thank you for not making comments & making me feel more uncomfortable. silence is so much better, for my healing, than telling me things i can visibly see in my reflection. thank you for your patience & not telling me i look tired, rough or sad. instead, this week at work on Monday i was greeted with a genuine “you look so great today, you look put together & sparkly” – i cant tell you how much something so little can affect someone. (i hope you know who you are, because you have that tendency to make everyone else around you smile, as well).

bottom line: living with chronic illness is hard, but when life blesses you with people who surround you with love, understanding & patience… youve simply hit gold.

to the ones reading this, thank you for being patient with me, thank you for the extra mounds of work you have put in despite all of your other tasks & thank you for reminding me that i am surrounded by amazing people, going through their own difficult times.

to all that have stayed with me supported me through the most difficult of times, thank you for your patience, as i continue to go through treatments & tests to rule out future diagnoses & find answers to get me back to “me again”.

kel

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be patient with me 

the irony of being an advocate of illnesses that may or may not be obvious at times & living with an illness others may think is mortifying to talk about…
is when you struggle the most being your own advocate. 
ill speak candidly & honestly with you when i tell you that this winter has not been an easy one. ive hit some bottoms that ive been scared i wouldn’t be pulled out of. the fear of living with any disease that may last your lifetime is the struggle of not knowing your “normal”. obstructions, flare after flare, side effects & every emotion that comes with illness. please be patient with me. 

autoimmune disease has wreaked havoc on many of my systems & it’s hard to tell if im a “regular” kind of sick or “just Crohns” sick. it’s scary not knowing how severe one virus can impact your body & it’s scarier to know that no matter how positive i am, or how much i “pray it away”, it will still be there. the scariest part for me is when i start to lose hope. 

many of my friends know me as positive but there are times where that can be furthest from the truth. as an introvert, i struggle to tell others when im hurting (& not just physically). i tend to cope by internalizing many things – always have. im working on this. please be patient with me. 

while many of you follow me on different platforms, please know that while i do try to publish my “real self”, there is much unseen. the dark days are not filled with smiles & funny memes. but then again, who wants to see a picture of my curled in ball in tears wondering if life will always be filled with crushing blows & moments like this? 

its never my intention to share these personal statements with anyone for sympathy. my hope is that this may provide a little insight to those who may not know what to say or do a around those living with illness & the anxieties/depression that it can inflict on ones quality of life. 

please be patient with me.