In October, my best friend hit her breaking point. She had been watching me slowly decline physically and mentally for months. It came to a head when she saw me doubled over in pain, sobbing and unable to breathe in a Metro station under the streets of Washington D.C. as we waited for the train that would take us back towards our college campus.
I had known for a while that it was time to tell someone with a little more life experience than my twenty year old friend how much trouble I was in. That night in the Metro was the first time I had left my dorm room for more than a run down to the convenience store on the first floor of my building in weeks. I was missing classes. Makayla was the extent of my social interaction. Shameless binges were my only source of entertainment, and even with Netflix on a steady stream, I was sleeping about eighteen hours a day. All of this was because the exhaustion was too much for me to move. Digesting any solid food was becoming impossible. I was having four to five debilitating migraine days a week–the kind where you pull the covers over your head and hope that no cars on the street get into a honking war. My skin was bruising and tearing for no good reason. My heart was racing even with my beta blocker on board, and my blood pressure would not get up to 90/60 no matter how much Midodrine I put in my body. Then there were the seizures that were coming frequently and fiercely enough that I was breaking ribs. It was bad, y’all. I was dying.
So that night in mid-October, Makayla got me back up into my dorm room, I threw up my dinner, and then I laid on my bathroom floor and called home. In tears, I confessed everything. I was terrified to tell my parents that I wasn’t going to the classes that we were paying so much for. I was scared to tell them how sick I had let myself get before finally asking for help. I was afraid that they would be angry–or worse, disappointed.
I don’t remember now what I was expecting from my mom. I’d guess it was for her to be the voice of reason. She would tell me which doctors we needed to get in touch with, how I could better be taking care of myself, and how we would move forward with school–just like she had done dozens of times throughout high school when my health and my education just couldn’t match stride.
For my whole life, my dad and I had had a plan that I would go to a top school and then on to do great things, so I remember vividly knowing that I was letting him down. I just knew that he was going to be upset with me for failing. He had always stood by my side and or behind me to push when I needed it. He encouraged me to make perfect grades and excel all the way through middle and high school. He put the best books by the greatest authors in my hands and started conversations on topics that would inspire me to think deeper on subjects most people my age would not give the time of day. There were times when this came across as tough, but my mom likes to remind me that my dad only ever holds me to the high expectations I set for myself. Which is true.
So when I got into American University in Washington, D.C., seven hundred miles from home and all of my medical team, he told me that if that is what I wanted I should go. He supported me every step of the way even though the school’s ideology does not match up with his. For the first year that I was there, he debated my professors through me, and for Christmas that year I gave him an entire semester’s worth of readings from one of my classes just because I thought he would find it fascinating. When my health got bad that first year, he talked me through it, and I managed to stay. I guess that’s why I assumed he would do that same thing when I reached out halfway through first semester my second year.
But my daddy. My daddy surprised both of us that night when I called. He told me to start packing my bags. He very calmly announced that if I was that sick, it was time to come home and regroup. In that moment, my daddy began protecting me from myself. He stopped the panicking voices in my head that were fighting over whether or not American University or my life were more important. He stopped the very persistent voice that was screaming about how I was letting him down. He stopped my tears. He provided a solution to the problem that I felt I had been facing alone. Suddenly–we were a team of three.
And we have stayed that team of three for the last eight months.
My father has watched over me, carefully taking in the subtle changes in the color of my face because he knows what flush and pallor indicate. He has picked me up off the floor every time that I have needed it even though it’s been too many. He has found ways to help my mom get me out of the shower while maintaining both of our modesty. He has talked me down from those moments of intense panic that my life is spiraling out of control or over completely. He has told me in the flashes of intense fear that I am not going to die because he won’t let me.
We joke around. We talk about all of the issues of the world. We share our ideas on how to fix them. We amicably disagree in some areas because I have learned to form opinions that are not my fathers since becoming somewhat of an adult. We listen to music and watch movies. We spend time out at our pool. Sometimes he sits close by while I nap because that’s the only way that I can spend time with him that day. We are friends just as much as he is my parent and mentor.
My dad protects me from myself because he knows that I am my greatest danger. My dad provides me with every single thing that I need to be successful in this life. And I am so grateful that life has shaped us into the people that we are for each other.
I am used to people doing a double take when they pass by me and see the abnormal way that I have to present myself to society. I am used to people staring when they see me wearing a mask as I shop at the mall. I am used to people staring because I have my Golden Retriever in Target. I am used to people staring because I use my wheelchair at my brother’s lacrosse game but park it outside the bathroom and walk in to use the toilet.
It’s not news to me that my disabilities make me “different”. I understand that surgeons and construction workers wear masks on the job, dogs are pets that greet us when we get home from a long day at work, and wheelchairs are for people who can’t walk. Except that none of these groups are exclusive.
Before the Coronavirus hit, I was instructed to wear a mask due to my severe Adrenal Insufficiency that makes my immune system incredibly fragile. When a healthy person’s system comes across a bacterial or viral invader, the Adrenal Glands produce an extra burst of Cortisol to compensate for the fight that’s taking place within the body to ward off the infection. Because my Adrenal Glands don’t make Cortisol, the invaders run rampant in my body, causing a more intense infection that puts my life at risk, meaning Strep or the Flu hospitalizes me. By being so high risk, it is critical that I wear a mask any time I am in a crowd–my doctor’s exact words way before COVID hit the United States. And there are lots of other people who have been told the same due to their chronic health issues such as being immuno-compromised due to illness or immuno-suppressed from certain medicines that treat things like cancer. That mask is saving our lives from your germs because our bodies can’t–please do not stare.
My dog is my hero. He saves my life on a regular basis. I could talk about him forever, telling stories about him alerting to a seizure while I was showering so that I didn’t drown or flipping my face out of a cushion so that I didn’t suffocate after I fainted. He picks me up off the floor with his bracing tasks, he knows how to make life easier on days that I am in my wheelchair, he calls my support system for help when something goes awry inside my body, and he applies pressure to the muscles that are spasming. When you see me walking or wheeling with him by my side in Target, it’s because he tells when my heart rate is so high I’m about to faint and I need to sit down so I don’t cause a scene, he picks up the boxes of pasta I drop on the floor with my Fibro hands or that are on the bottom shelf (because I WILL faint if I bend over to pick them up), and he provides a built in walker/balance support. Among many other things–all of which you can read about on his Instagram (@with.cabbage.i.can) or on his Facebook page (With Cabbage I Can). My Service Dog gives me a quality of life and an independence that I had lost–please do not stare.
I only recently began using a wheelchair part time. It changed my life. Before the chair rolled onto the scene, I had to ration my already limited number of spoons like crazy. Walking long distances is an absolute no go for me. Standing for a long period of time? Not a thing that’s going to happen. Muscle weakness is real. Fatigue is awful. Pain in my muscles and joints will often prevent me from moving my legs at all. With the wheelchair as part of my bad day–or even so-so day–supplies, I can do so much more. I can join my friends on outings to the mall. I can go to my brother’s sporting events. I can bake or cook. By having access to the wheelchair when I need it, I have the opportunity to leave my couch. When walking gets to be too much for me, it’s there. My wheelchair is there for me when my legs decide they don’t want to be anymore–please do not stare.
There are many parts of disability that can be awkward or embarrassing for us. We need assistance devices to keep us safe. For me, those things are my mask, my Service Dog, and my wheelchair. Sometimes my list includes more or less. For other people with disabilities, the list includes other things. For people in the able bodied community, all we ask is for respect, and that simply means not doing a double take or staring when you see something that you think is different or doesn’t fit what you think should be the norm.
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.
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.
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.
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.
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.
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.
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. Ihave 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 thefighting 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.
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!
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.