Diagnosis Be Damned

Mom, Advocate, Caregiver, Ally

Yesterday, I learned that someone I love very much has Type 1 Diabetes. It was a sudden diagnosis that to most everyone seemed to come without warning. When the test results came back, he was told to go directly to the emergency room, where his blood sugar was tested and found to be 425. The crazy thing? He was at the doctor yesterday for his school check up, and the doctor had no intention and felt there was no indication to test for diabetes. However, his mom had noticed a drastic weight loss in a short period of time, an increased thirst, and more frequent urination. She knows her child. She knows what those are signs of. She felt that something was not right with her baby. So she pushed. And she was right.

Tears were shed yesterday as everyone absorbed this new information, as we tried to accept what changes must now be made in his young life, and as we mourned for what a few hours before had been reality. I remember the night that I was diagnosed with Crohn’s Disease–my first diagnosis. My mom held me, and we cried together as we realized my life was changed forever. As each new diagnosis has come over the years, we have coped in different ways. None has felt quite like the first, though.

When I look back on it, I remember a journey that began when I was in elementary school–too young to understand enough to fight for myself. My mom was my advocate. When I am too sick now–even as an adult–my mom still stands as my advocate. I have seen her yell at doctors. I have seen her cry in front of doctors. I have seen her make lists and do research to share with doctors. I have seen her educate doctors on medical conditions they never would have considered.

There are times when children with chronic illnesses need our parents to be our voices and our advocates because we are too young, because we are too sick, because we are too tired, because we are considered too ignorant to be taken seriously. There are times when we need our parents to be more than just a parent. At twenty years old, I should be able to drive myself wherever I want to go–but my driver’s license was revoked due to fainting and seizures. At twenty years old, I should be able to shower 100% by myself 100% of the time–but my arms often freeze up, and again with the fainting and seizures. At twenty years old, I should be able to sleep through the night all by myself–but the fear of adrenal failure when I am in adrenal crisis sometimes means someone sleeping close enough to keep an eye on me in case it comes to making the call to head to the hospital in the middle of the night. At twenty years old, I should have a relationship with my parents that is becoming far less dependent–but I need my parents to fill the role of caregiver in some capacity every single day.

I have good days too. I have days where I am able to muster up the strength to use my own voice when I am sitting on an exam table and need the doctor to hear my words and validate my pain or my fatigue or my numbness or my absence. On those days, my mom sits there with me, and she listens. She holds my hand or nods encouragingly. She fills in the blanks of my memory and my list of symptoms I made to talk about when the brain fog gets the better of me. She demands they listen if it seems they would rather push a pill than solve the puzzle. My mom is my ally on these days.

Yesterday, people that I love began their journey in these shoes, and it made me reflect on mine. It has been a long one–a hard one. But in lots of ways it has created a bond and a strength in my family that not a lot of other families have. My mother is my mom, my advocate, my caregiver, and my ally. More than that, she is my strength.

Mind Your Masking

Boys and girls. Friends and family. Ladies and gentlemen. Today we are talking about masks. We are talking about why we are wearing them, when we are wearing them, and how we are wearing them. We are talking about masks because apparently there are quite a few people out there who need this explained to them.

some lovely ladies (including three essential, front-line workers <3) wearing their masks)

The country is beginning to open back up. The state of Alabama, where I live, is one of the places that reopened this week, which has caused some interesting and intense issues to come up in my community. Hoover City Schools has decided to go through with their in-person graduation ceremonies on May 20th and 21st, meaning that more than 3500 people will gather together in one place during a global pandemic. I would just like to remind everyone here that the numbers of people being diagnosed and dying are still climbing. The school board is putting everyone at risk. The local, state, and federal governments are putting everyone at risk by opening restaurants, salons, stores, etc. back up to the public. One might argue that people have the choice of whether or not they attend any of these places. Yes. Sure. However, I would counter with the points that many do not have access to resources that keep them well enough informed to make educated decisions; many people are not in socioeconomic positions to continue staying home by choice now that their employers are reopening and asking them to come back or lose money; many people do not have the emotional capacity, mental capacity, or maturity to make the correct choice to turn down invitations to public gatherings that they have been missing so much for the past however long.

That was my rant about why the people in charge should not be giving us the options to reintegrate into society. BUT since they are in fact giving us that choice, it is vital that people wear their masks when they make the choice to go out. Breathing each other’s air is dangerous right now. Really, really dangerous. Six to ten feet of separation is fabulous. Covering your mouth when you cough is wonderful. Washing your hands is a must. Wearing your mask is essential to keeping yourself and others healthy. You do not know who around you is sick. Honestly, you do not know if you are sick. So many people who have tested positive for this virus have been asymptomatic for long periods of time before spiking a fever–if they ever do at all. There are still extensive unknowns about COVID-19, but what we do know is terrifying. Protect yourself. Protect others. It’s that simple.

If you are leaving your house, wear your mask. If you get out of your car for any reason, wear your mask. If you are going to be around any person that does not live with you, wear your mask.

And wear it the right way, y’all!

The mask should cover both your mouth and your nose at all times. Do not touch it once you have left the safety of your house or your car. Do not cut a nose hole in your mask because it’s hard to breathe. Do not hang the mask from one ear because you suddenly feel a little suffocated. Do not take it off and then put it back on because you wanted to have a conversation with someone. Just don’t do it. You totally defeat the purpose of the mask if it is not protecting both your mouth and your nose the entire time you are in the unsafe public zone. Also, remember to wash your mask after every time you wear it out because the germs are very real and they are out there. If you need to go out more than once, wear a different mask while the other one is washing.

This is not a drill.

As someone who was told to wear a mask by a team of specialists long before COVID came, I can promise you that you will get over feeling out of fashion. I can promise you that you will eventually get used to the feeling of something on your face. I can promise you that you can be confident enough to get over people looking at you funny–and guess what, you’re super lucky in that everyone else is doing this too right now, so you’re not even the weird chick like I was.

me on 24 December ***2017***, wearing a mask in public like a champ

A mask could save your life today, tomorrow, the next day. A mask could be what saves your coworker, your favorite waitress, or the check out lady at the grocery store from the virus you’ve been unknowingly carrying around.

Be a hero. Do what you can. We’ve got this.

My Life Partner

People and animals will come and go in my life. I will move from place to place in this world. Different things will capture my interest and take up my time as I grow. The one thing that I can count on to never leave me, to be my constant companion, to remain present through it all no matter who I am with, where in the world I am, or what I am doing is my life partner–Judas.

Early on in high school, I had this amazing therapist who did a wonderful job of validating all of my feelings and making me feel sane even when my anger or sadness or mania or exhaustion or anxiety or sense of defeat were totally out of control. She helped me find ways to cope with the stresses that piled up on my shoulders from being an overachieving International Baccalaureate student with extra curriculars, a sister who often felt like a third parent, the friend who everyone expected to take care of them despite them being far too broken to be helped by anyone who wasn’t a professional, and a chronically sick kid. This therapist would hand me playdough to fist and model throughout my school day. She would let me spend an hour coloring if that’s what I needed. She listened without judgement. She had a little punching bag that accepted my tiny fists of fury without complaint. She let me yell at an empty chair in her office when I had harsh words that no one actually needed to hear.

All of these things were helpful. So so unbelievably helpful. But one of the best things Mrs. Smith ever gave to me was Judas.

As high school progressed, I was getting sicker and sicker. My pain was intensifying. My exhaustion was never ending. My brain fog was getting harder to wade through. I wasn’t keeping any solid food down. I was so weak. My labs were coming back with bad news. My intestines looked like hamburger meat. And I was pissed off about it. I was desperately angry with no one to yell at or cuss out or hit. So one day Mrs. Smith told me to write a letter to my illness–to personify this horrible thing that was taking away my life little by little and making me so fucking miserable.

I thought it was a really dumb idea. I couldn’t write a letter to something that I couldn’t picture as being able to receive my words like a person. I left her office with her encouragement to just think about it and because I loved and trusted her, I did. As I thought about it, I realized that this sickness that was ravaging my body and ruining my life was a monster. But it was a monster made up of my own systems.

The thing about autoimmune diseases is that they are diseases caused by your immune system, which is the system that is meant to protect your body from foreign invaders (bad things), attacking whichever part of your body the disease is affecting. For example–Crohn’s Disease is an autoimmune disease where the immune system attacks the person’s digestive system anywhere from their mouth to their anus; Hashimoto’s Disease is an autoimmune disease where the immune system attacks the person’s thyroid gland; Rheumatoid Arthritis is an autoimmune disease where the immune system attacks the person’s joints. It really really sucks when the part of your body that is supposed to protect you from harm is the part of your body that is trying to kill you.

So I was going about my business with these thoughts on my mind, and suddenly it came to me. Judas. My illness–my monster made up of my own white blood cells trying to kill me–would be named Judas in order to personify it enough to write a letter full of all my built up rage. Judas betrayed Jesus, and my body betrays me. Bam. Perfect.

I wrote my letter. It made me feel better. For a while. Then it didn’t anymore. So I wrote another letter. And another. And another. Until I didn’t need the letters anymore because I’m able to just talk to Judas. I’ve accepted him as part of me. Judas is my life partner–my constant companion–and everyone in my life has accepted him too. My friends and family will acknowledge him and refer to him by name when I let out a pained noise or I double over as we’re walking. They ask how Judas is or if Judas is going to let me do something that day. And it’s healthy for me. It works.

Usable Hours

Let’s talk about usable hours. A healthy adult should have around fourteen usable hours in their day to get shit done. Fourteen hours to eat, practice good personal hygiene, work, have hobbies, maintain personal relationships, stay physically fit, etc.

Right now, I wake up at 8am to take my morning meds and start my day. I average between 30 and 45 minutes before my first crash of the day hits and I am down for a two to three hour nap. I take my next round of meds at 11am and then again at 12:30. The second full on crash comes between 1pm and 2pm, lasting until around 5pm when I’m woken up for dinner. After dinner, I have a minute of good before I’m down again. Bedtime is never later than 9pm as of late.

These crashes are non-negotiable. My body tells me that I must lay down somewhere in the fetal position with the covers pulled over my head. I hit a brick wall with the words “This is where you die” graffitied on them.

What really sucks? The clinicians and research scientists want to make us feel extra sucky about ourselves in that they say we can’t count sitting staring off into space or pretending we’re watching Netflix or scrolling through social media or resting with our eyes open in our usable hours. This means that when you break down my day, I average three to four usable hours. For a few more hours than that, I may be semi-conscious, but being alive is fucking exhausting. Holding my head up takes more energy than I have to offer. Carrying on an intelligent conversation isn’t possible through the confusion and the fog. So I lay there–awake–but kind of a shell of a person, occasionally shuddering or moaning, until I feel like I won’t die if I get up long enough to do a passion project just to feel like I participated in my life today.

That’s why I love baking. In baking, it takes maybe ten or fifteen minutes to measure out ingredients and put them in the mixer together (30 minutes if it involves melting sugar or chocolate on the stove because I’m having a good day), and then I get to sit perfectly still in my chair in front of the warm oven and stare at my creation growing into something delicious. And my dirty little secret? My mom does all the heavy lifting in the kitchen. She stirs the thick batters. She pours everything into the baking pans. She does everything I can’t because I’m not giving up the parts of baking that I love just because there are parts I physically can’t make happen due to weakness or fatigue. She’s my favorite.

So all my friends on social media see posts all the time of me cooking and baking but in real talk conversations the word is I am dying. Both are true. Because I choose to use my few usable hours doing something I love and that I can manage with a little help. And I want to share my creations with people because I am proud of them.

Also LuLaRoe modeling. I have a lot of fun doing that. I only wear LuLaRoe anyway because it’s the only clothing that doesn’t hurt my skin or my abdomen. Plus every outfit is so stinking cute that taking thirty seconds to snap a cute photo is a fun way to brighten my day. It makes me feel more like a normal twenty year old girl.

Should I also be sharing the hours of my day that I’m shivering in bed, crying that I feel like I’m going to die? Maybe. I’ll think about it. But I think it would be hurtful to a lot of people. It’s hard to see someone you care about go through life the way I do. Cakes and cookies and cute clothes are a lot prettier.

How do y’all spend your usable hours?

So I Start A Revolution From My Bed

Revolution — from the Latin root “revolutio” meaning “to turn around”

defined by the Merriam-Webster as “a sudden, radical, or complete change” and by dictionary.com as “a sudden, complete, or marked change in something”

For a long time, the Oasis lyric “so I start a revolution from my bed” has been in my Instagram bio and one of the driving quotes in my life. I think for any young adult there is a desperate desire for a turn around–a change. We crave this radical thing called independence that our parents coach us towards and prepare us for but protect us from at the same time.

In the chronic illness community, that independence is an even more radical concept. We want so badly to experience the same changes that everyone else our age does. We want to graduate and go off to school or start our trades. We want to begin making impacts in the areas that we are passionate about. We want to find love whether it be with a partner or a pet or a project. But we also want to change what is happening within our bodies. We want to stop the chronic, debilitating pain that prevents us from doing those other things in “normal” or most efficient ways. We want to see our joints and muscles function in the ways they are meant to. We want to have hearts that beat in proper rhythm at appropriate rates. We want to have eyes that see and ears that hear. We want to have brain waves that send proper signals to nerves that receive them correctly. We want skin that doesn’t feel like it’s burning on the inside or the outside even when it hasn’t seen sunlight for weeks. We want intestines that run smoothly instead of guts that roll like freight trains. We want these parts of ourselves to suddenly, radically, and completely change. At least, I do.

The thing is, I know that there aren’t many things I can do to change what goes on inside my body. I am sick. I have been sick my whole life. I will be sick for the rest of my life. However, I can start a revolution in my life. I just have to do it from my bed for right now because that is where I am. And that is totally okay. My revolution is to change what I can. I can change how I spend my days. I can change who I surround myself with. I can change what I input. So I’m going to. I’m starting to take those steps toward a revolution. I’ve started this passion project of a blog that I’ve wanted for years. I’ve replaced toxic people in my life with positive, loving, and supportive friends who I adore. I am making an effort to filter out the trash things that the world tries to expose me to in favor of things that bring me joy. Y’all should really try it–it’s magical.

My mom and I had a bit of miscommunication when I told her about my idea for this post. When she hears “revolution” her immediate thought is about fighting. At first I explained that the definitions I was using were about turn around; radical and marked change. After thinking about it for a second, though, I got extremely offended at the idea that she didn’t think I fight every single day. Because you best believe that I am constantly revolting against my body just as it is revolting against me.

She then assured me that she knows I fight my body valiantly and that she more so associates revolution with the fighting that leads to world change. I like this perspective on revolution too. I still aspire to change the world. Maybe it won’t be with this blog. Maybe it will be. But definitely some way. Probably within the chronic illness community because it certainly needs some revolution. And while I may not have gotten that project totally off the ground yet, I have to start somewhere. This seems as good a place as any–right here on my laptop and from my bed.

Out of Order — Part Two

OUT OF ORDER — Part Two

I’d definitely like to think I’m more than just a bunch of diagnoses, and maybe I should have told you those things about myself first. However, the name of the blog is “Diagnosis Be Damned” and the name of the post is “Out of Order,” so it should be okay either way.

Okay so I have started and restarted typing the next sentence of this post about a hundred times because it turns out I am super bad at talking about myself in the way that I originally intended to. I never really thought I looked at myself in such a clinical way–my last post–but maybe I do. It’s easier that way for someone who has anxiety maybe? I can’t change the things that happen to me, but the choices I make that make me who I am can be talked about and judged.

Oof. That last bit was a little deep, so I’ll move on to my darlingest friend Jess’s input. She definitely dove deep too, but she started with some light things like how I am: hilarious, sassy AF, a great baker (facts), obsessed with Disney movies, spontaneous, and a boho flower child. On a more serious note, she added things like how I am: as in love with her service dog Fauna as she is, empathic, inquisitive, stubborn as Hell, extremely loyal, and selfless in that I always put others before myself. I feel as though some of those are a bunch of pish posh, but I’ll let it slide because these are her contributions and not mine.

I texted my best friend Makayla and told her to tell me about me, and she responded, “STFU literally telling my therapist about you right now,” which could be terrifying, but I’m okay with it because Makayla is my ride or die, and we’re basically married. I already know all the bad things she has to say about me. She mostly loves me despite them.

Marcus says I am small, opinionated, compassionate, and tempting (insert face palm emoji here). Empathetic and stubborn also came up when talking to him. If those were said by two different people, they must be true?

Other things that I feel it is important to note are that I am extremely family oriented, my friends mean the world to me, I have an incredible Service Dog named Cabbage who takes the best care of me, my happy place is on a little island in the boundary waters between Minnesota and Canada (but only in the summer because I absolutely DO NOT do cold), I’m probably wearing LulaRoe, I have in fact read that, if it’s a Saturday during football season you can find me watching the SEC (I am a Vol for life), my car’s name is Sammi (but I’m not allowed to drive her anymore because seizures), and I am a tiny human–like microscopic.

And that’s me 🙂 Tell me about you in the comments!

Out of Order — Part One

In a surge of enthusiasm, I uploaded my first post without much consideration of the fact that it has no real introduction to the blog or myself. Since I have always jokingly said that I should tattoo “OUT OF ORDER” to my forehead anyway, I guess this is as good a way to begin getting to know me as any.

OUT OF ORDER — Part One

The concept of an “Out of Order” tattoo really stems from the mess that is the state of my general well-being…or lack of well-being. I’m pretty poor off to be honest. My body and overall health have been out of order for as long as I can remember, coming to a real head when I hit middle school and could no longer complete an entire week of school attendance due to debilitating pain and hours spent on the toilet. We had known forever that something in my guts was off, but my pediatrician assured my mother when she asked him about it quite specifically that “kids don’t get Crohn’s.” When I was diagnosed with Crohn’s Disease the summer before I started high school, I tried really hard to forgive that man for the years I spent missing out on baseball trophy ceremonies and shitting my pants at friends’ houses.

After that, the diagnoses kind of just kept coming. We got my Crohn’s under control only for my joints to begin causing problems followed in close order by my muscles. The next diagnosis to come was chronic migraines. I had also always struggled with my period, so it was no surprise that my ovarian cysts were paired with Endometriosis. Then, the summer between my Junior and Senior years of high school, the doctors noticed that my resting heart rate was between 140 and 160 beats per minute and would spike to over 200 when I stood. I was quickly diagnosed with Postural Orthostatic Tachycardia Syndrome, a form of Dysautonomia. Around that time, I started having pseudoseizures in addition to everything else, and I was getting infections in my body that only people dying of AIDs should have despite the fact that my immune system is stronger than everyone else’s due to all of my diseases being auto-immune. Anyway. I was a medical mystery. None of my doctors knew what to do with me. So they sent me to the Mayo Clinic in Rochester, MN.

That was quite the experience. My mom and I were at the hospital up there for a month, and we learned a lot but not anything life changing. They told me that I have an asymmetrical hippocampus, which explains some of my memory, concentration, and communication difficulties. They also told me that I have Fibromyalgia and explained that Fibromyalgia is a real thing that they’re doing real research on now–not something that doctors tell their patients when they need to validate pain but can’t find anything wrong with them. We did a class on managing life with Fibromyalgia–or Central Sensitization Disorder–and we came home.

I went off to college (more about that later), and I was doing really well for a long time. My joints started popping out of socket at some point last year, leading to a clinical diagnosis of Ehlers-Danlos Syndrome, but shit really hit the fan again when I ended up in the hospital last April. The hospital I went to was incompetent, didn’t know my medical history, and gave me a lidocane patch for a pulled muscle in my back. It’s fine. I didn’t die. I now know that what really happened was I went into adrenal crisis because it happened again in October of this year–still a very sore subject, not ready to talk about it, stay tuned for a post later. While I was in the hospital in October for adrenal failure, I was also diagnosed with three different types of migraines because I’m just that cool: Hemiplegic, Ocular, and good old fashioned chronic migraines.

All of this is to say–I’m totally Out of Order, but it’s all good. I’m doing the damn thing anyway.

Tomorrow Will Be Better

Telling stories is an interesting business when you consider that there are often multiple places you could begin. I guess I’ll start this one by saying that I met Jenny Lawson through her book Furiously Happy: A Funny Book About Horrible Things at the very beginning of this new year, and it totally changed my life. I could have started this by telling you how ironic it is that I’m going to tell you about a book and, by extension, an entire movement called “Furiously Happy” on a day when I am desperately miserable. I think Jenny would appreciate that, though.

If you know me, you know that I left 2019 in pretty bad shape. Honestly, if you know me, you know that I’ve spent the last seven or so years in pretty bad shape. The last three months have been–well, they’ve been enough for me to come home from college. Which again, if you know me, you know that’s something I said would never happen. But adrenal failure is apparently big and bad enough that the things you say no longer mean much.

Coming home from school totally rocked my world. Most people who have interacted with me since Halloween when I got back to Alabama probably wouldn’t be able to tell–I bullshit extremely well face to face. And to be quite honest, for the first couple months of being home, I was too physically sick to be mentally sick. Or maybe I was just too physically sick for my brain to let me remember any of it. Now, though, it’s all settling in, and I am losing my noodles. Even yesterday–a day I consider to have been a good day–I spent hours on the internet figuring out exactly what it would look like to move my entire life to San Antonio to work at Nowhere Bookshop so that Jenny Lawson can be my mentor and help me survive this life and also become the writer I know I’m supposed to be. (I understand that I have never met her and that she’s old enough to be my mom and that it’s a bit crazy and all of the other things wrong with this obsession that I have, but I’m hoping when I get to the part of what I’m writing that’s actually about the book you’ll all understand.) Then today I’m desperately miserable. My chest is too tight. I’ve cried more than I’d like to admit. I want to hurt myself or something else. I’m thinking thoughts I’m deeply ashamed of towards the things in my life that I swear I am beyond grateful for. I want to be alone, but I feel like if I am alone for one more second I will shatter into a million pieces. I want to sleep for the rest of my life, but I know that if I don’t throw something my life will end very quickly because I’ll explode.

Yesterday was good. Today is very very not.

But today I finished Furiously Happy: A Funny Book About Horrible Things by Jenny Lawson, my new hero. I want to share this book with everyone, but I especially want to share it with the people in my life who I know struggle with mental and chronic illness. Because fuck does she get it.

I started listening to the audio book with my mom, and while that’s totally fine–well it’s totally fine for me and my mom because we’re best friends and we talk about everything and nothing is ever awkward between us–there are parts of the book that are so real and so intimate that I’m glad I finished it alone. I laughed. I cried. I shouted “ME TOO.” I swear to you this book has changed my life. I started following Jenny on Instagram. I subscribed to her blog. I joined her book club. I have demanded a Rory for Valentine’s Day but have said that I will settle for signed copies of all of Jenny’s books if taxidermied raccoons cannot be found. I have watched her TedTalk that aired literally one week and one day ago about a million times–and it has inspired me to start telling my story.

I want to be furiously happy. I want to recognize that my depression lies and feel like I am winning every single day that I wake up and have not allowed my brain to kill me. I want to join the community of misfits that Jenny talks about in her book and in the introduction to her book club because it is mind blowing to me that there really are people out there like me. I want to sit in my bed on days when I have no other choice because of Severe Adrenal Insufficiency or Dysautonomia or Crohn’s Disease or one of my three kinds of migraines or Ehlers Danlos Syndrome or Endometriosis or Fibromyalgia and know that there’s an online world of people out there who could be my friends if I just had the confidence to look for them because this loneliness is suffocating me. Mostly, I want to write again. I want to put my words out there in a way I haven’t been able to since my health got really bad again. Who knows? Maybe some of those things can go together?

Today I was desperately miserable, but at the beginning of 2020 I found a book that led me to a woman who I think has inspired me to be an active participant in my own life. So hopefully tomorrow will be better.