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.

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