Sick but Making Power Moves

It’s crazy how quickly life can change, making what you used to take for granted as your regular everyday routine, feel as foreign as another lifetime. I stopped working back in December 2018 – a full eight months ago. Life, before I got sick, feels so far away, like I never even had a healthy body. Life, before I stopped working from being sick, feels like just yesterday, but also like an eternity ago at the same time. I guess the dichotomy of that makes sense if I really think about it. The past eight months, I’ve had a constant internal struggle between accepting where I am in life, trying to focus on moving forward, and getting stuck with one foot in my past life, not wanting to let go of what used to be.

I think one of the most significant contributors to feeling stuck was the process of applying for long-term disability. LTD isn’t something I talked about publically a lot. I was afraid it would negatively affect my claim. But it was a massive part of my life — honestly, the most time-consuming part of my life these past eight months. Applying for LTD took up the time, energy, and brain space that work used to hold for me. It’s pretty ironic (and ridiculously annoying) that applying for LTD becomes a full-time job. At least when I had a job, I got praise for doing work, with LTD I just encountered people who looked for any reason not to believe me and call me psycho-somatic; because that’s productive.

The purpose of taking time off from working was so I could spend more time focusing on my health. Working full-time and treating my chronic illness wasn’t a cute look on me. I was trying to be 110% committed to my job, 110% committed to my health, with 50% of my energy and brainpower. And as we all can see, those numbers don’t add up. So I stopped working, applied for LTD and waited, and waited, and waited some more. All this waiting meant I didn’t have the money to fight my illnesses as hard as I wanted, it meant extra stress on my unhealthy body as I fought to prove to people who didn’t even know me that I was sick, and it meant my life I had put on hold to get better was feeling farther and farther away. On top of this, I was still living in a house where our ceiling collapsed from a water heater leak causing the house to be full of mold while we waited for insurance to approve for us to move out, making all the meds I was taking null and void, my mom had major surgery to remove a cantaloupe-sized fibroid that put her out of commission for 6 weeks, and my older sister was diagnosed with breast cancer and had a double mastectomy. So yeah, we had a little bit going on in the Schutze fam.

Needless to say, my plan of moving home with my mom, getting LTD so I could focus on my health wasn’t working out as smoothly as I had hoped. These past couple months have been some of the hardest in my life; trying to stay positive despite what felt like the world crashing down around me was sometimes impossible. And after waiting seven months for LTD to decide on my claim, I finally received my answer about a month ago: I was denied. This was absolutely heartbreaking. For those of you who have a chronic illness, specifically Lyme or a tick-borne, you understand exactly where my head went. I was in a complete panic on how I was going to afford to keep living, let alone get better. I was mentally adding up all my expenses in my head: the doctor’s bills (not covered by insurance), the supplements (not covered by insurance), the prescriptions, the lab work (not covered by insurance), the health insurance, the costly clean food I had to eat – it didn’t seem feasible. Being chronically sick is so expensive, and for many people, their sickness is what financially keeps them from being able to afford to get better. How screwed up is that?

What made this even harder for me to handle was why LTD denied me. They stated because I have a blog and go to coffee shops some times, I should be able to do my full-time job. You tell me if that computes in your head? I’ll wait.

Yeah, no that’s ridiculous.

Let’s not forget that my job was part of the reason I was so sick and struggled to get better. And for the first two+ months of not working, I was bed-ridden, spending 98% of my time in my bed sleeping or laying there feeling miserable as the years of pushing my body past its limits finally caught up with me. And yes, now after eight months of being home, resting, removing a lot of stressors from my life, I was thankfully getting enough energy to leave my bed some days, and go sit at a coffee shop surrounded by people instead of in my childhood bedroom all alone all day starring at the walls wishing they were people.

And I will say, I don’t take this improvement for granted. I feel very lucky that even despite being unable to afford to hit my illness at all angles, and still living in an environment with mold, my body has made improvements that have helped my quality of life. But being able to function 50% of the time instead of 2% of the time is still not enough to do a 60+ hours a week job. And my whole purpose of getting LTD was to take a year off of work to focus on my health so I could get my life back. I don’t want to be sick forever. Who at 29 years old, wants to be sick, living at home with their mom, as they watch their friends lives and careers continue as they live their life in the limbo that is a chronic illness? Pshh, not this girl.

So here I was outraged, hurt, and fearful of what the future would hold. I couldn’t believe the reasons they listed for my denial, so I immediately started researching LTD lawyers. I was going to appeal; I was going to stick it to the man and not let the spinless, money-driven, insurance company beat me. I mean, I paid for this insurance for goodness sakes. Plus, I felt like I had no choice. I was out of money, out of options, and completely out of spoons. So hyped up on adrenaline I called a handful of law firms, spoke with some lawyers, read their contracts, sent them my denial letter, and did extensive research on appealing. Within a couple of days, I went from being 150% sure I was going to appeal, to having a knot in my stomach and questioning if this was the right path for me. And so this rollercoaster of craziness and uncertainty continued.

I had lawyers tell me they wouldn’t take my case because they didn’t think I could win, while others said it would take a lot of time and money for me to win, and it most likely wouldn’t be in an appeal, but in a lawsuit, because I’m so young. A lawsuit? I wasn’t trying to have a suit that could cost me tens of thousands of dollars and years of my life. Yes, I said years. From the research I did and many people in the chronic illness community I spoke to, it can take an average of 3-5 years to win a suit against an LTD company, and that’s even if you win. I wasn’t sure I wanted to sign the next 3-5 years of my life away to a potential lawsuit at 29 years old. That would mean I wouldn’t be able to work for another 3-5 years or see any money until then either.

So as much as I wanted to stick it to the man, it didn’t seem like the best option or me. Leaving me feeling paralyzed, and not sure what move to make next, was there even another move to make? For so long, I thought that LTD was my only option, both financially and physically, to afford my body the time it needed to heal. This final realization that LTD wasn’t going to be the saving grace I was counting on was a heavy blow. It sent me into a dark place I had been fighting to avoid visiting for a long time. That place where you let yourself lose hope, and you don’t see any way out. Not to say there wasn’t a way out, but there was no way I was going to be capable of seeing it while I was in this state of mind.

I was camping out in doom and gloom; I made a nice little cozy spot for myself where I could be mad at the world, pout about where I was in life, tell myself it wasn’t fair, and let the heaviness of everything going on in life consume me. I haven’t shied away from sharing that my illnesses have caused me to struggle with anxiety and depression, and sadly, I know this isn’t uncommon for people with chronic disease. I’m sure more than one of you reading this right now have had similar thoughts, and I hate that. I hate that our medical system has failed us, I hate the illness is so expensive, so isolating, and that we can be left feeling incapable of escaping it all.

But sometimes we need to hit our rock bottom to realize there is still a light shining above us. The dark place I was renting space in was a turning point for me because after spending some time there, I realized I didn’t like it. I had hit a fork in the road: I could either give up and let my story be one of a girl conquered by her illness, or find the strength to keep pushing and take my power back. So I took that last little bit of hope I had left deep down in my reserves and decided to keep fighting.

It took everything I had to change my mindset, to tell myself it was all going to work out, even if I couldn’t see how. And then, slowly, things started to shift. Insurance agreed to pay to move me out of my house and put me up in a hotel in downtown Dallas for a month, so I was finally out of a moldy environment. Within a week or so, my mind started to feel clearer, and I had mental energy I haven’t had in a long time. Having a space of my own gave me a sense of independence that I missed a lot and made me more confident in myself. I still didn’t know what the heck I was going to do about LTD, but the heaviness of it wasn’t feeling as heavy. Giving myself the grace to believe it would all work out made such a difference in how I was viewing the world.

And then something happened: Fibroid Awareness Month. Back in early June, a friend of mine reached out to me to help her company with a campaign for Fibroid Awareness Month. She had seen my campaign for Lyme Disease Awareness Month and wanted to do something similar. I helped her, and her team, build out their campaign and really enjoyed it. We joked about how great it would be for me to come work for her in Austin and how dumb Lyme was for being in the way. At the time that was all I thought of the conversation, a “yeah wouldn’t that be great in another lifetime”. I think this is a trap many of us with chronic illness can fall into. We get stuck in an all or nothing mindset because much of our lives are structured that way. But with this newfound energy and a desire to take my power back, the way I was thinking started to shift.

I knew I couldn’t do a full-time job right now, that was not in the cards for me. I needed to continue to focus on my health as my top priority, but what if I could work part-time from home? Make some money to pay for my treatments and massive medical bills (again thanks health care system for that). When I first stopped working, I knew part-time work wasn’t an option for me, I had discussed it with my doctors, and it was clear I needed to stop working altogether. But here I was eight months later, I had made some improvements with my health, and was finally out of a moldy environment. So I decided to believe in myself and make a move. I reached out to my friend and asked her about the potential of doing some part-time consulting work for her. I had no idea if this was going to be an option she would be interested in, but I knew I had to try.

Here I am a couple of weeks later officially employed part-time. YOUR GIRL GOT A JOB, Y’ALL. And it’s a perfect fit for where I am in life right now. I will be helping market a much needed surgical alternative for women with fibroids and doing patient advocacy work. And I can do it from home, in my bed. I mean, what a fit.

Two months ago, I wouldn’t have been able to fathom working, let alone having the confidence to reach out and ask for a job that perfectly fit my needs. I believe timing is essential, but even more important is believing that everything will work out, even in your darkest moments when you can’t see how. Life is messy and hard, and when you are chronically sick, it’s even more so. But we can’t forget that there are ebbs and flows in life, and when we are down we have to remember in time, we will be back up. So here’s to a new life routine, one that always remembers, we can be sick and still make power moves.

ROLLIN’ INTO THE LAST YEAR OF MY TWENTIES

Today is my 29th birthday, the last year in my twenties. I am not sure how I got here because I could’ve sworn I was just working as a cashier at my local Mexican food restaurant dreaming of the day I would go to college and get out of my hometown.

Life looks a little different at 29 than I expected it to look. I was never the girl to dream about the day she would get married or the whole white-picket-fence fairy-tale. But I was the girl that dreamed of getting a good job making enough money to support myself and my family. For the majority of my life, I’ve had tunnel vision on becoming successful in the working world. It was my top priority, and I didn’t let myself have room for any other dreams. Success to me was being seen as driven and hard worker. A good job title and high salary were my yardsticks to success, and I didn’t have time for much more than that.

Now, at 29 with a bit more emotional maturity and a hard slap in the face to my ego, I realize how little life I was letting myself live so focused on a job and money as my only success metrics. That one aspect of life I cared SO much about is not even a current possibility for me. Isn’t life cute that way? I think a big part of me didn’t let myself be the white-picket fence dreamer because that felt too vulnerable and not as much in my control as working hard and making money. Jokes on me though, because in the attempt to focus only on things I thought I could control I ended up in a season of life out of my control. I bet it all on red, and the ball landed on black. But I have come to realize, that is what happens when you become overly obsessed and laser-focused on one aspect of life as your end-all-be-all, you completely forget there is so much more life to live.

I have been thinking about this birthday a lot over the last couple of months. In general, I think 29 is a significant birthday. It’s your last year in your twenties, and culturally we see it as that one last year before we step completely into full-blown adulthood. We are expected to “have it together” and know who we are and what we want. But sitting here right now, I can honestly say I have no idea what I want, and I feel like I’m just starting to get to know who I am. It’s so cliche, but age really is just a number. I mean let’s be real y’all, I look closer to the age of a girl that just graduated from high school than a girl rolling into the last year of her twenties (which I can finally appreciate for the first time in my life). But babyface jokes aside, I anticipated this being a tough birthday for me. There are a lot of boxes I haven’t checked off that society says I should have done by now and one of those boxes was definitely not getting a chronic illness and becoming roomies with my mom again.

So, I would be lying if I sat here and said I hadn’t had some pity party moments for myself around my current state of affairs. I am grieving those little girl dreams of what I thought life would look like at this age, and I have anxiety surrounding my thoughts of where my friends are in their lives and careers in comparison to mine. I said it earlier, but my ego feels like it is standing in front of a stadium full of people completely naked and exposed. But I’ve also had just as many moments of peace and acceptance of where I am in my life to combat those negative thoughts. My life isn’t following some societal expectation of where a 29-year-old female should be. I don’t fit into that box, and I am starting to not only be okay with that but seeing the possibilities it can open up for me to be who I am meant to be and live a life I can be proud of living. One that is not ego driven, money driven or society driven, but driven by love and acceptance of myself.

At 29 I am finally taking my blinders off and learning to look at life in a whole new light. It’s not about a job title, money, or success. It’s really about self-love, acceptance, and meaningful relationships with others. This year I am going to learn to dream again. I am going to dream about all the possibilities of what I can do with my life when I get better, of all the authentic and genuine relationships I can make and nurture by learning to love myself and be vulnerable enough to share that with others. I am going to dream without ego or self-judgment, and through that dreaming, I am going to finally start living.

BUT YOU LOOK GOOD

“But you look good.” This is a response I have gotten more times than I can count when I tell people I have Lyme Disease. I do believe most people who say this have only good intentions, but a lot of times it does more harm than good. 

One of the hardest social stigmas, when you are sick, is that you are supposed to look and act a certain way. So, when someone tells you that you look good, it feels like they are diminishing how you feel. And how you look and how you feel often have no correlation when you are living with a chronic illness. This is a blessing and a curse. On the one hand, no one wants to look sick, it’s nice to have your body not take absolutely everything away from you, but on the other hand, it’s a complete mind screw.

You can’t see that I’ve had a migraine at exactly 3pm every day for the last two weeks, that my hands and feet have been numb and tingling for 4 years straight, that my brain feels like it’s on fire when I try to concentrate on anything, or that my anxiety gets so intense I start to physically feel it in every part of my body. These are all invisible, but so real, and have nothing to do with how I look.

I remember a recent interaction with someone I hadn’t seen in a while. They asked how I was doing and why I was back home in Dallas. With anxiety and shame doing flips in my stomach I proceeded to tell them that I had Lyme disease which had gotten progressively worse causing me to move home and focus on my health. One of the first things the person said to me after I had just bared this very vulnerable part of myself to them was “But you look good on social media.” It took a moment for me to process that this was the first thing they chose to say to me after I had just shared this personal news. Not an acknowledgment of what I had just said, but a judgment on how the perception that they had created of me from social media didn’t align with what being sick looked like to them. I smiled at this person and quickly found a way to escape the conversation because I was now feeling even more shame and embarrassment about my health and decision to move home.

When you live with an invisible disease, you often fight self-doubt and worry about people’s perception of you. Those negative thoughts swim around in your head: “You are being weak, it’s not that bad,” “You are going crazy,” “What if this is all in your head?”. So, when someone tells you “But you look good” it fuels those negative thoughts, and those negative thoughts do nothing but wreak more havoc on your body and stunt the healing process. 

Part of the reason I started this blog was to push against the stigma of what it looks like to be sick. When that person decided to focus on what their perception of being sick looked like vs what me, a person with chronic illness, looked like right in front of them, it made me sit back and think about how much weight I was putting on other’s perceptions of me. How focusing on their negative and ignorant words was doing nothing to help me heal my body or my mind. There are so many of us out here suffering in silence and self-doubt because of misconceptions of what life should look like with an illness. I know before I got sick, I couldn’t fully empathize with people who were ill.  But I am here to tell you (and remind myself) that negative self-talk is crap. You AREN’T weak, you are extremely strong. You AREN’T crazy, you are brave. You AREN’T making this all up in your head, what you feel is real.

There is no right or wrong way to be or look sick. There is only you and what you need to do to move through your illness. Some days that might be pretending like you aren’t sick and going out and using every bit of energy and stamina you have to do something fun, other days it might be completely giving in to the pain and not even lifting your head off your pillow.

Just because it’s invisible doesn’t mean it’s not real. There will always be people who won’t understand or believe you. But you don’t need them to; you need to focus on yourself and your fight. Your real, true, valid fight to get back something most people take for granted. And for those who stay in the ignorance of not understanding and tell you “but you look good”, just smile because you know your truth, whether they can see it or not.

SPLASH OF LYME

I am sitting in a coffee shop determined to get all the thoughts swimming around in my head onto paper, but I’m not sure where to start. I guess the best place is just to come out and say it: I have Chronic Neurological Lyme Disease. Saying these words is something I have gotten used to over the last year, but not until recently did I let the meaning and consequences of them truly take hold. You see, I am a stubborn person. Always have been. Since I was a little girl, I’ve had an idea of what my life “should” look like, and who I “should” be. I’ve had a laser-focused determination to be perceived in a certain way: strong, independent, likable, the h a r d e s t worker, always in control. And I was doing a decent job of following the typical steps to what I thought my life needed to look like in order to be a “success”. I had a good job, I made good money, I was climbing the corporate ladder, I always acted like I had an answer, and on the outside, I seemed like I had it together.

Until a tiny little bug changed everything…

THE BACK STORY

Though this all really starts from when I was a little girl (as most people’s baggage does), the catalyst of my current journey started almost 5 years ago. I had just graduated from The University of Texas (Hook ‘Em), and I was on the adventure of a lifetime. I was riding a bike from Austin, Texas to Anchorage, Alaska to raise money for cancer research. This is a cause extremely dear to my heart. I had originally decided to do this ride to help support my dad in his fight with Multiple Myeloma, but he passed away before he could see me cross the finish line. This ride was, and still is, the most monumental time in my entire life. I made the most genuine and true friendships I have ever had, I learned how to push myself harder than I ever thought I could, both mentally and physically, and I was able to grieve and honor my dad in such a special and unique way.

I was 4 days out from finishing the ride and we were in the middle of nowhere Canada at an abandoned campsite called Burwash Landing. I woke up with a huge, bullseye bite on my hand. My immediate thought was that I had been bitten by a poisonous spider. My teammate ended up having to drive me 100 miles to find the nearest doctor in a town with a population of a few hundred people. Once we finally made it to the doctor, he confirmed my suspension that it was a spider bite and sent me on my way with some steroids. I didn’t think about this bite again until 4 years later.

In the four years that followed, I started having weird symptoms that I kept chalking up to getting older and being an adult. I was tired all the time and I started being really forgetful. I remember really noticing having memory problems when my boyfriend at the time kept getting frustrated with me asking him a question a million times or not remembering full conversations we had. It started to worry me, so I went to a doctor to see if something was wrong. The answer I kept getting from every doctor I saw was “your vitamin D is low”. So, I started taking vitamin D, and tried to ignore all the random symptoms I kept getting. It was easy for me to do at first because I didn’t just wake up one day and feel sick, it was a slow and quiet process happening in the background as I continued to act like a productive 20-something.

THE DISCOVERY

It wasn’t until I moved to Houston for a new job a year and a half ago that my symptoms started getting to the point where I couldn’t avoid them anymore. I had body aches, joint pain, numbness and tingling in my hands and feet, horrible migraines, brain fog, word retrieval problems, hair loss, blurry vision, insomnia, loss of coordination, heart palpitations, nausea, and I developed anxiety and depression that I couldn’t get myself out of it. The list goes on, but the final symptom that made me unable to avoid the fact that something was really wrong was when I began to lose my ability to read. I was never a great reader to begin with truthfully, but I started to just stare at words without being able to form them in my head. This wasn’t just complicated spelling B type words, I am talking every day vocabulary words. I kept this to myself because, one, I was embarrassed and, two, I didn’t want to be seen as weak. My mom finally made me see a doctor in Houston that was known for helping people with medical issues that other doctors tended to ignore. In December of 2017 I was diagnosed with Lyme Disease. It turned out that red bullseye bite on my hand wasn’t a spider bite at all, but a Lyme-infected tick bite. I still had pictures of it saved on my phone from sending it to my mom when I went to see that doctor in Canada. The date on picture was August 4, 2014. This meant I had Lyme for 4 years before I was diagnosed. Plenty of time for this tiny bite to wreak havoc over my entire body.

THE THICK OF IT

The funny thing is, I had no idea what Lyme disease was, just that a housewife on RHOC had it, so when I was diagnosed, I was actually relieved to have a reason for all these random and annoying symptoms. And in true lyme-brain form, I totally misunderstood the treatment plan my doctor had set out for me. I thought I was going to be on some antibiotic for 8 weeks and would be back to my old self. All my doctor said was “Drink a lot of water. You are going to feel worse before you feel better.” I didn’t have time to be sick, I was too busy being focused on my career and keeping up this façade of what I thought my life was supposed to look like. I spent the next year taking tons of medications and antibiotics, completely changing my diet, and spending the majority of my weekends laying on the couch because I had no energy for anything else. Treatment was complete and utter hell. I had no idea what I was in for. Being so naive to this disease was a huge detriment to me. I was really sick, but refusing to acknowledge it. I kept working 50+ hours a week even when I was in the middle of a really bad herx. (A herx is when a Lyme patient is going through treatment and the medication causes “kill off” of the Lyme in your body which, in turn, causes inflammation. Basically, it makes your symptoms WAY worse before they get better). I would wake up and barely be able to get myself out of bed, my entire body felt like I was run over by a truck, and I constantly felt like I was about to throw up or pass out. But I would go to work anyways, hide in my office, and try to pretend like I felt fine. When I felt like I was about to faint, I would go hide in the bathroom until the dizziness would calm down and then I would go back to working. I was still struggling to read words sometimes and now I was having a hard time even forming sentences. You see, Lyme doesn’t just affect your body, it can also affect your brain. I wasn’t just having physical symptoms, but a lot of mental ones as well. I became severely anxious and depressed. I started becoming a hermit and avoiding talking to my friends in fear of having to face the reality of how sick I was, both mentally and physically. I got pretty good at faking being fine to the majority of people in my life; I was even fooling myself most of the time. It was only late at night, lying in bed with insomnia and no energy left to put up the façade, that I truly let myself feel the weight of this disease. I started having dark thoughts that I had never had in my life. I started to wonder what the point of anything was. These thoughts really scared me and I knew these thoughts weren’t me, but I couldn’t stop my mind from thinking them and my body from feeling them.

THE REALITY

Over the past year I have tried many different medications, which I will get into more in later blogs. And I started to feel better for a little bit, but then symptoms would come back and new ones would show up. Now a year out from being diagnosed, I am sicker than when I started treatment. At the end of the day, none of the medications have worked. I have been running from the reality of this disease since the day I was diagnosed, because if I was to acknowledge how sick I was, I wasn’t going to be able to be the person I had worked so hard to be. Over the past couple of months, it has gotten too hard to keep up the façade. I am so tired. I am tired of hiding from this disease, I am tired of trying to act like I feel okay when I don’t, and I am tired of not feeling like myself. This disease has slowly made me a shell of myself. As I write this it is still super hard to admit that. This disease has taken my life away from me. But it isn’t only Lyme’s fault. Over the last year, I wanted to believe I was making my health my top priority. But looking back now, I can see that isn’t true. I was putting work and the desire to live like a “normal” 28-year-old first. But the reality is, I don’t have that luxury anymore. That was taken away from me the minute I was bitten by that tick almost 5 years ago. I have had to really look deep inside myself over the past couple of months as I struggled to find any treatment that would work. As I sit here now, I am still in search of the right doctor with the right treatment plan, but what I have realized is that I can no longer live the life I was living and fight this disease. If I am going to get better, both physically and mentally, from the damage Lyme has done to my body and my mind, I am going to have to make it a full-time job. But not only that, I am going to have to really face myself and acknowledge that life’s not going to look like I thought it would, at least for now.

THE PRESENT

I am writing this blog post from a coffee shop in Flower Mound, Texas. My home town I worked really hard to get away from, but where my journey has ultimately taken me back to. About four weeks ago, I left my job in Houston and moved back in with my Mom to give myself a real fighting chance to beat this disease. I realized my job, my constant need to be perfect and keeping up the façade of being “normal” was making me even more sick. I am realizing I have a lot of work to do to heal my body and my mind. I am scared shitless and still have a lot of shame in this decision. I am a planner at heart, and I am now living at home, jobless, with no plan. I am having to lean into the unknown, something I am very bad at. I never in a million years thought this is where I would be, but I am slowly coming to terms with knowing this is where I need to be. Deep down I know I wasn’t really happy with my life. I felt like something was missing, but I didn’t know what it was, and I was too scared to listen to that little voice inside my head telling me I wasn’t being true to myself. This experience has made me have to completely stop and reanalyze everything I thought I knew as true about my life and myself. So, though I have no idea what my future holds, a part of me is excited to see where this journey takes me. This disease has been the hardest thing I have ever gone through, and I know I have even more hard days ahead. I want to use this blog as a way to document my journey as I lean into the vulnerability of the unknown. I want to show the raw and real experiences that come with not only dealing with a chronic illness, but also the journey of having to strip yourself down to nothing in order to find your true self. It just took a splash of Lyme for me to get here.