Midnight Pinball

I have learned many new things since my diagnosis four years ago. I now know relapsing polychondritis is an autoimmune disease which causes my body to attack all of my cartilage — and cartilage is everywhere. I never thought I’d know that, but I now know about inflammation, infusions, immunosuppressants and so much more.

I learned about costochondritis, inflammation in the cartilage of my ribs. This pain comes out of nowhere and on a pain scale of 1-10, it rates about 9,000. When it hits, I can’t breathe or move. The pain has knocked me off my feet at times. This isn’t much fun for me, but it also isn’t fun for my husband to watch when I suddenly fall to the ground and writhe in agony. As my husband and I are adjusting to this new life, I try to give my him a clue about how I’m doing on any given day with a simple “I just feel icky today but I’ll be OK,” or “Today is not good and I’m still deciding if medical intervention is necessary,” or “Take me to the hospital now!”

When I can’t breathe, however, it’s hard to give him a status update. After one costochondritis event, I described the pain as, “It’s like a ninja* snuck up on me and stabbed me in the ribs!” This became our term for my rib pain.

“Ninja pain.”

When I’m trying to breathe despite the pain, my husband will ask “ninjas?” and I’ll nod. Then he knows that there’s nothing he can do for me but wait for the worst to pass. When I can breathe again, I’ll gasp, “Stupid ninjas!” and we’ll smile a bit. If we’re in public when this happens, I’m sure overhearing a conversation that is limited to “ninjas?” a nod, and then laughter is confusing for bystanders, but it works for us.

Relapsing polychondritis has taken away the thought of pain-free days. Some days are pretty good, but when my disease is acting up and making a nuisance of itself, I may start the day with debilitating pain in my hip. An hour later, my hip will still be sore but the sharp pains will have moved to an elbow, a wrist, my big toe, or any other joint in my body. When the pain just bounces around my body, I call that “pinball pain.” It’s another shorthand term for the benefit of those around me, letting them know I hurt and not to expect much from me. “Pinball pain” days cause me to re-evaluate my to-do list. I cancel everything that doesn’t really need to be accomplished that day and go to bed early. I’m one of the lucky ones; these pains usually go away after 18-36 hours for me. Many of my friends in the relapsing polychondritis community aren’t so lucky.

So why do I use silly terms for a serious disease? I use them because I can. There are so many things about relapsing polychondritis beyond my control: the disease, the medications, the side-effects and the whole “BAM! Some new symptom appeared and your whole life is about to change yet again” thing.

I will always look for the laugh in my situation. Always.

It makes me feel like I have just a little control over a disease that is dominating my life.

*I’m sure real-life ninjas are rather nice people and that we’d be good friends. It’s these imaginary ninjas that I despise.

Follow this journey on Relapsing Polychondritis

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Author standing in front of the arch of a canyon on a hike I was adopted at birth. It has never been a secret and it has never been a problem in my life. You may have, at least once, looked at your family and thought, “How on Earth can I be related to these people?” I’m not.  Score! There is one less than perfect aspect, though: I do not look much like my family.

My mother and sister have very elegant hands with long, thin fingers and beautiful nails. My hands? Not so much.

All of the members of my adopted family have olive skin that tans beautifully. My skin? I am so white I am see-through.

All of the members of my adopted family have lovely, thick, wavy hair. My hair? Baby-fine and stick straight.

I have, at times, hated my hands and my skin and my hair, but recently I am experiencing a different form of body-hate: my body hates me.

On October 9, 2012, I was diagnosed with relapsing polychondritis. Don’t worry, it’s not contagious. Relapsing polychondritis is an auto-immune disorder. There is no known cause and there is no cure.

My immune system is attacking and destroying the cartilage in my body.  The first cartilage destroyed was in my left ear. I woke up one day with a cauliflower ear. My ear now resembles one of a wrestler, boxer, or rugby player. Bizarre, yes, but it was not really a huge deal. I keep it covered with my long hair.  It can actually be a source of some amusement. I tried to convince some of my children’s friends that I was injured engaging in a mixed-martial arts event or perhaps a backyard cage match. They almost fell for it.

My next symptom was pain in my joints — my hands, elbows, jaws, knees, feet, and hips. The pain came on gradually so I did not notice it at first. Trust me, I notice it now. I am 43 years old but feel 83. Often I feel even older than that.

This insidious disease next struck my right ear and my nose. I have experienced painful cartilage deterioration in both places. Fortunately the damage is not yet visible to the casual observer. I can cover an ear with my hair — even both ears — but my nose? My hair won’t cover that. I am reminded of a Rita Rudner joke: “I was going to have cosmetic surgery until I noticed that the doctor’s office was full of portraits by Picasso. My nose may not be perfect, but at least it’s centered.” I have never loved my nose, but I am very grateful to still have it!

And now for the really bizarre parts: This disease can attack my trachea. If it becomes severely damaged, I may need a tracheotomy where I would forever breathe through a hole in my neck. I may lose my voice as well. This disease can attack my heart. If it becomes severely damaged, I may need stents to support my weakened arteries. A few days ago I began to have trouble swallowing liquids and may need to have my esophagus stretched. I am not making this up — they actually can stretch an esophagus. I am experiencing pressure inside my ears and have already lost a significant amount of hearing. My eyes are currently unaffected, but they are at risk.

This disease is truly a little slice of heaven.

I will live on medication for the rest of my life. Pain medication. Anti-inflammatories. Immunosuppressants. Steroids. The list will get longer.

I have told some friends and a few family members. I am not telling the people I work with because I want to continue to work as long as I am able. If they know I am sick, I may not get the contracts I rely on. So why am I blogging about this? I need a space to process all that is happening to me.

Since my diagnosis, I am rotating between shock, horror and depression while trying to ignore the all-consuming fear. Every new symptom causes me to loathe this disease even more. But I am a planner and I am a do-er. So what are my plans? What can I do?

I can fight this every step of the way.

I can be grateful for every good day and every small blessing.

I can love my body even while it hates me.

I can stay out of the sun, eat right, exercise, get enough rest and manage my stress.

I plan to be healthier in one year than I am today.

In short: I plan to make relapsing polychondritis look sexy.

One of my favorite books is “Rita Hayworth and the Shawshank Redemption” by Stephen King. The last line of the book is fitting: “I hope.”

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Today I woke up knowing it was going to be a rough day. My pain was somewhere between a grimace and the crying face on the pain scale. I don’t even use numbers anymore; my face tells the story.

Tamara Macnaughton

But I had a meeting today, so I woke up, showered then lied down for 10 minutes. I got up again, put on half of my makeup and lied back down for 10 minutes again. Then I got back up, did the other half of my makeup and rested for another ten minutes. I got up again, got dressed and rested for 10 minutes one last time. Finally, in my last brazen attempt to make it out the door before I gave up all hope, I packed my lunch, gathered my purse and got into my car.

But I had to pick up my prescription before going to work first. I decided to pull into the disabled parking space because walking from my car into the store was going to be a challenge — making it all the way back to the pharmacy and the impending line was going to be an even larger one.

I don’t always park in a disabled parking spot. Actually, I rarely do. But yes, on bad days I use it. I slowly walked through the store with the frailness of someone three times my age. I stood in line with my legs fighting against me. They were practically screaming, “Sit down, right here!” “Not on the floor,” I argued against them. I just needed to make it back to my car. I got my prescription and said I didn’t need a bag, knowing I would be taking a pill immediately.

As I slowly teetered my way back to my car, fighting a war against my own body to put one foot in front of the other, I opened the pill bottle, grabbed my water from my purse and took one quickly. The next 15 minutes while I waited for relief was going to be a challenge.

As I walked towards my car, two young boys behind me were talking about drug addicts. The conversation caught my attention because I work in the substance abuse field. Behavioral health is my passion. But as I listened closer, this wasn’t just any conversation. They were talking about someone. Clearly, they couldn’t be talking about me. Or were they? As I opened my car door, it became apparent they were talking about me. Loudly. For anyone within earshot to hear. And before I had time to close my door, one of them yelled, “You aren’t handicapped, you’re a junkie.” I sat there for a few minutes. I was on the verge of tears, wondering how it was possible someone could lack even the most basic amount of compassion.

This morning, I fought against pain those young boys have likely never experienced, let alone suffer from chronically. I realized it took me nearly an hour longer than normal to get ready today because I simply couldn’t keep going without a break. 40 minutes were wasted because I needed to lie down. 40 minutes! And they had the audacity to place judgment over me for a five-minute snapshot of my life that they witnessed.

As I was sitting on my desk later, my feelings rotated between anger, sadness and embarrassment. I wish I would have said something. I wish I would have been able to construct a sentence that would provided them even the most basic amount of insight on what I was feeling.

I wish I could have told them about optic neuritis and neuropathy. I wish I could have shown them the lesions on my brain. I wish I could have shared the story of waking up blind only to hear the words, “You have multiple sclerosis.” I wish I could have told them about what it feels like never knowing which body you’re going to wake up to next morning. I wish I would have told them what it’s like to spend your life being poked and prodded and being emotionally, mentally and physically exhausted as you fight against your own immune system.

But I couldn’t. I didn’t. I wasn’t ready to hear that. I didn’t need to hear the uneducated, uncompassionate banter of those young men because today I’m already out of spoons.

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Pain: one of my least favorite words. It reminds me of the struggles I have faced for over a decade. I was 9 years old when I started my period. It didn’t seem like a big deal at the time. In fact, my mom was over zealous with welcoming me into “womanhood.” It wasn’t until a few months later that the pain began. A few days before my cycle I would get very nauseous,the color in my face would fade to gray and I experienced horrible cramps. They were so excruciating that during my period I missed three to four days of school per month. My heating pad became my best friend. When I told my mom how bad the pain was she said, “Oh honey, I understand.” I was bedridden for days out of the month, too. I accepted this as normal thing because my mom did, too.

I never sought medical treatment because my pain ended when my period did. It wasn’t until I was 22 that the pain started and never stopped. It was located on my lower right side. It was sharp, twisting, gnawing and commanded attention. I went to the gynecologist searching for answers. She did an ultrasound and said that nothing was gynecologically wrong. She thought that it could be my appendix rupturing. I was ordered to go to the hospital for an outpatient CAT scan. The technician informed me that they would be using an IV contrast. I never had a contrast before, but I ignorantly obliged. She injected it into my vein and scurried into the booth. Seconds after being injected and put into the tube I started to gasp for air. I wasn’t visible to the tech and I was terrified. I couldn’t speak and started to lose consciousness. The only thing I knew to do was bang my arms against the machine, praying that help would arrive. I remember “blacking out.” Long story short I went into anaphylaxis. I was revived after one minute, but want to know what? No appendicitis. No answers, no nothing. I was a “healthy” 22-year-old girl.

I went on to see over eight different doctors until I finally said enough is enough. The diagnosis came after me pleading with my new gynecologist for months on end to perform a laparoscopy to see why I was having pelvic pain. After months of personal research, I was positive I had endometriosis. My gynecologist was very adamant about it. She bluntly stated, “You’re too young to have endometriosis.”  Endometriosis is a gynecological condition in which tissue similar to the lining of the uterus implants lesions on the outside of the uterus. This can cause pain similar to appendicitis, bowel problems such as constipation and or diarrhea, infertility, scar tissue and many other symptoms.

I was crushed because I knew I needed to figure out what was going on with me before things got even worse. I was barely able to eat and function in daily life. I took birth control pills for months to appease her. With no relief from the medication, my doctor scheduled me for the surgery. I was so nervous that I wouldn’t have anything wrong with me. Maybe she was right and I just had a low tolerance for pain? After a few hours in the operating room, I woke up foggy and anxious, waiting to hear the results. I was diagnosed with stage 4 endometriosis. I started to cry tears of happiness. After all the years of being brushed off by doctors, I felt so validated for the first time!

Being diagnosed meant I wasn’t imagining it and I had the chance to get better.

I was diagnosed 12 years after my initial symptoms. With endometriosis, on average it takes 10 years to figure out what’s going on because of a lack of knowledge in the medical community and the symptoms can be so similar to gastrointestinal issues. Only surgery can officially diagnose it.

Being diagnosed at 22 was tough. At that age, you’re supposed to be going out with your friends, having intimacy with your partner, going to school and working towards a career. For me it all came to a screeching halt. My plans to go to nursing school had vanished. I wasn’t able to attend due to the severe pain. Sex became so unbearable that I would bleed and cry and even end up in the emergency room.

woman with dark hair standing next to man wearing hooded jacket
Jacquie and her husband.

People innocently ask, “So, are you still sick?” or “When are you going to get a job?” These are all very honest questions, but the truth is, I truly don’t know. I have accepted that I may never be back to my “old self.” Instead, I have become a newer version of myself. I may not be able to attend events all the time, but I’m wise enough to know it is not my fault. I know my limits and take care of myself. Being chronically ill has given me the ability to appreciate my good days.

Support is one of the best things you can have, especially when you’re sick. My husband is my biggest advocate. He never let me give up without finding a diagnosis. I feel so lucky to have him in my life. Having an amazing team of doctors helps as well. I’ve had seven surgeries in the last three years and I’m slowly starting to feel as best as I can given my circumstance. Many women have multiple failed surgeries.

Since my last surgery, my life has improved. I currently go to pelvic floor physical therapy to help relax my tight muscles, see my specialist every few weeks to follow up and go to the chiropractor to help with my pain. There is no cure for endometriosis, but I take each day at a time and know that I am not alone.

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Uterus. There, I said it! Uterus! Periods. Ovaries. Fallopian Tubes. Bleeding. Tampon. Rectum. Hormones. Bladder. Cervix. Menstruation. Vagina. Discharge. Pelvis. Pads. Endometriosis.

Awkward.

For me, these “uncomfortable” words are normal conversation starters. Conversations that cost hundreds of dollars and occur during painful, exposing and demoralizing “internal examinations” that make a pap smear feel like a stroll in the park. Conversations with a plethora of in-depth questions about the most intimate details of my life – sex, bowel movements, urination, contraception, pregnancy, pre-menstrual syndrome, weight, fractured relationships and mental illness… Oh, did I mention they’re with complete strangers?

Honestly, I don’t fully understand why I have found conversations about religion easier than talking about a disease that affects the reproductive organs of one in 10 females worldwide. I think it may have less to do with endometriosis and more to do with what’s associated with it. Most people don’t know how to react during conversations about chronic illness. If you compound that with chronic pain, emotional suffering, periods, sex, cervixes or uteri, I guess it makes sense why it’s awkward. Maybe it’s also because talking about your vagina is so personal — I mean, it’s a “private part” after all. The feminist in me wonders if it has something to do with living in a historically male-dominated society. In the end, it’s just not seen as “kosher,” but if we stay silent, society remains ignorant.

Here are the five stages I went through with endometriosis.

Stage 1: Faking It 

Courtesy of polycystic ovarian syndrome (PCOS), acne sprouted when I was 11 and once puberty kicked in, my face resembled a pepperoni pizza. At 15 I started taking Roaccutane — a potent pharmaceutical to treat cystic acne. Roaccutane is believed to cause birth defects, so the dermatologist refused to prescribe it unless I also took the birth control pill (which never made sense because I wasn’t sexually active).

Within a few months, chronic abdominal pain started. The result: X-rays, ultrasounds, specialists, painkillers, frequent school absences and a colonoscopy. Diagnosis: psycho-sematic pain. It was all in my head. Treatment: psychology and cease taking Roaccutane. I was in pain all the time and there was no physiological cause. I stopped taking both medications and a few months later the pain resolved, but ovulation and menstruation had become hell. No one suspected a gynecological condition or that “the pill” was the culprit. Rumor was that I was “faking it” and it wasn’t long before I started to spiral into a dark, damp hole I couldn’t escape from.

Stage 2: Diagnostic Conundrum 

Fast-forward five years: The pain returned after four months of hormonal contraception. Again: scans, ultrasounds, blood tests, specialists, painkillers, weight gain, isolation. Again: No answers. I was a “diagnostic conundrum.’” But I ended the silence. Something was wrong and I knew I wasn’t faking it.

Stage 3: Diagnosis

An ovarian cyst eventually showed up on an ultrasound, so I booked in for a cystectomy. After six months on the surgical waiting list the cyst resolved itself. Instead, I had a diagnostic laparoscopy where the gynecologist found endometriosis, a tissue similar to the lining of the uterus found outside the womb. Turns out I also have PCOS. Unfortunately, treatment did not stop the pain, but I had a name! Oh, the relief and closure.

A diagnosis meant there were legitimate, medical reasons for the constant pain, chronic fatigue, cramping, nausea and bloating. I finally understood why I had persistent acne, headaches, heavy periods, skin tags, difficulty losing weight, erratic mood swings, a dodgy immune system and pain during urination, bowel movements and sex. I was so glad I hadn’t been silent. Something was wrong and now I had proof.

Stage 4: Grief

What followed was a three-year process of watching all I deeply valued in this world fall away. I ceased being an independent adult. I was 24, divorced, obese, unemployed, suicidal, incapable of doing housework, eating frozen meals, dropping and breaking my valuables, constantly losing stuff and sharing a bedroom with my mother. I felt like a dependent child, living in a dark, damp pit with no exit plan. I had such regular appointments, my general practitioner became like a best friend.

By the world’s standards I felt like I was a complete failure. I spent five years grieving the death of my dreams, goals and hopes for my life because there is no cure for endometriosis.

Stage 5: Acceptance and Healing 

I never stopped fighting for my health. After 10 years of symptoms and five-and-a-half years of non-stop pain, I eventually reduced the severity of my symptoms. Slowly, day by day I came to a place of acceptance.

I gave myself permission to grieve the loss of life as I knew it. Allowing myself to mourn the loss of my marriage, career, body and independence gave me the emotional space needed to heal and move on with this my new life.

I spent thousands of dollars in conventional and alternative specialist fees, I had three excision surgeries in the space of three years and two were with well-renowned endometriosis specialists — but I was still sick. Eventually, I started to give myself credit. I never gave up, even when I wanted to. I tried anything and everything and never stopped fighting for the best medical care I could afford. I’d done all I could and that had to be enough.

I formed emotional and medical support teams; my friends, family, a peer support group called Grow, choir, church, general practitioner, gynecologist, osteopath, mental health nurse and pain specialists supported me all in different ways. Individually, their help had limited success, but together I had a large team of various people to support me emotionally, physically, socially and spiritually.

I started participating in the endometriosis sisterhood, mostly online. Engaging in various Facebook groups and online forums helped me connect with other endo suffers. I wasn’t alone, I could seek advice from people who understood and find a sense of purpose in encouraging and educating others. I also participated in a documentary called “Endo & Us” which was cathartic and is previewing alongside the Australian showings of “Endo What?

I began engaging with endometriosis creatively. I wrote and recorded a song, started painting and writing  blogs and poems — again. It helped me process the last 10 years. It helped me express it, so others could begin to understand. It inspired me to share my story so other women may not have to suffer alone in silence.

I had 100 percent dedication to an intensive chronic pain program at my local hospital. It was three weeks of increasing my ability to exercise, function in society and accepting the pain. How? Stretching three times a day, learning about medication, sleep hygiene and the physiology of pain, increasing my exercise, sitting and standing tolerances, thought management, practicing desensitization, reducing the pain medication, and support from building relationships with other pain suffers.

I found faith and hope. For me, it was trusting in a God who created me, loves me and will give me a perfectly healthy body one day. I also began to see that my pain and suffering was not in vain. Somehow I was encouraging and supporting others — because I was in pain, they weren’t alone in their suffering.

I was finally “OK.”

Acceptance led to physical, spiritual and emotional healing. I can now do basic housework, cook, socialize and exercize. I have a part-time job, am studying again, lost weight and travelled. I can do these things despite the fact I still have constant pain and regular flare-ups.

If you have endo, speak up and don’t be ashamed. If you have symptoms, speak up and don’t be ashamed. If you never speak up and advocate for yourself, you will never learn to manage the symptoms.

Go on! Say it, just once. I dare you. “Yoo-ter-uhs.”

See, it’s not that scary.

Editor’s note: Any medical information included is based on a personal experience. For questions or concerns regarding health, please consult a doctor or medical professional.

Follow this journey on Breaking Stigma.

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Dear Teenaged Tracy,

You are not “crazy.” You are sick.

I know. It really, really sucks. I’m sorry you’re sick, and I’m sorry you’ll never be cured.

But please take comfort in knowing that there’s a name for what you have. For the sinking feeling you get when you realize your period has started, completely unscheduled. For the creeping sensation that happens right before the world gets hazy and pain begins to crush your abdomen. For the searing, crippling agony that radiates through your entire body, until you fall asleep from exhaustion. For what’s kept you from countless classes, social events, obligations and a feeling of security. There’s a name. And there are people who have what you have.

Your life with endometriosis isn’t going to be easy, but I promise that a diagnosis will make it easier. You’ll have a surgery and probably more than one, and your scars will just become another casualty of finding solutions to your symptoms.

You’ll take a myriad of pills and have an equal number of doctors, poking and prodding you for the rest of your life. You’ll know more about your illness than some of those doctors will, and you’ll get frustrated and weed some out before you find one you can trust. You’ll argue with insurance companies and become everyone’s go-to person for medical advice. You hate doctors now, but you’ll get used to them.

And you’ll be shocked to know how much you’ll talk about your uterus some day. You’re going to blog about your uterus, and people are going to read it. I’m sorry. Please don’t be embarrassed. It’ll be great. I promise.

I should probably tell you that you might not have kids. You might not be able to conceive on your own, and if you do, you might have trouble carrying that baby to a full term. But I want you to know that you’re still going to fall in love and get married. And your husband is never going to hold your likely infertility against you. “Family” might not look the same to others as it does to you, but it’s going to mean the same.

You’ll have to give up some of the busyness that you thrive on, so that you have energy to do the things you truly love. You’ll have to prioritize reasons to leave the house, so that you can travel that weekend or attend a party without being exhausted or suffering a flare-up. Oh, and please start letting go now because you’re too young to be so stressed.

But you’ll still have fun. You’ll survive college. You’ll move to a new state. You’ll get a job in your field. You’ll make new friends. You’ll be in a band. You’ll go a lot of places. You’ll fall in love with writing again. You’ll save up your energy so that you can unleash all of your emotions at a ton of concerts and music festivals. You’ll have a lot of incredible experiences that not even endometriosis can take away from you.
I know you’re probably scared now and wondering how you’re going to do all of this on your own. But don’t worry! You’re not going to be on your own.

You’re going to have an amazing husband who will make you food or take care of chores when you’re too sick and tired. Who will hold you and watch your favorite TV shows, even if you fall asleep in the middle of them. Who will sit in all of your major doctor appointments and listen to you rant about feeling like crap, despite the fact there’s no distinct point to the ranting. Who will still think you’re beautiful when you spend days in pajamas with no makeup.

You’ll have a great family to be there for you, even though they live in another state. They’ll pick up the phone and listen to you recite the doctor’s orders. They’ll adjust meal plans to accommodate your vegetarian diet. (Yeah, get this. You’ll really love veggies some day. Right?!) They will be ceaselessly optimistic about your health, even when you’re certain that there’s nothing to look forward to. They’ll love you despite that.

You’ll also have the sweetest little dog to curl up next to on the couch. Who will snuggle under your electric blanket and lick away your tears. Who will be a bigger support to you than most humans, even though she has no idea what’s wrong. Even your job will be great! You’ll work for a cause you care a lot about. You’ll have co-workers and managers who will understand that working from home is easier on your body. And when you need to take a day off for surgeries and doctor appointments, you’ll have a great team you can count on.

And you’ll have a ton of great friends who will support you from day one. You’ll even have friends with endometriosis — both at home and across the country! You’ll have shoulders to cry on and people who will listen to your probably-too-graphic recounts of your latest procedures. But they’ll always be encouraging, even if they don’t always understand.

There will be people out there who don’t understand. A lot of people will say cold and callous things. And I know you’ll take it to heart. You’ll wonder how people can be so ignorant, how they can’t sympathize with something they can’t experience.

But please try to disregard the criticism. And please know you’re doing everything right, even if it doesn’t always feel like it.

Endometriosis is going to be one of the most incredible and most terrible things that’s ever happened to you. It’s going to take away a lot that you thought was certain, but it’s going to teach you so much about yourself.

You’ll find out who really cares, what really deserves your attention and how you should take care of yourself. It’s going to be a constant learning experience, years and years of trial-and-error. You’re going to feel like you’ll never get it right, never reach a point of serenity and understanding. But you know, I think those are myths anyway, and you’re going to be OK without them.

Teenaged Tracy, you can do all of this. It’ll absolutely seem overwhelming at first, and sometimes, even years into your diagnosis, it won’t make sense. You’ll get mad and cry and want to give up, but you won’t ever give up. You’ll keep going — not just because you have no other choice, but because it’s who you are.

I’m proud of you already. And the best is yet to come.

a woman standing in front of the sunset
Tracy.

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