Why hello there

Good morning aliens! 

Take a moment to:

And don't forget:

Love,

an Addison alien

who is proud to be an alien-mermaid hybrid

RUMInations

"Live as though life is rigged in your favor" - Rumi

The photo above is of a note my friend, Elliot, wrote and posted on a bulletin board in her bedroom.

"Live as though life is rigged in your favor"

It's a quote from one of my favorite poets, Rumi. I'd never heard it before seeing this photo but I don't think I will ever forget it.

You see, Elliot wrote this note just weeks before taking cancer down the only way she could: by dying. She valiantly and bravely battled through chemo and surgeries, but the cancer just kept coming back. Elliot passed away at just 60 years old.

Her grieving husband shared this photo a few days after she died. The above note is one of the last things she wrote.

Take a moment and let that sink in: a woman, dying of cancer, could still look at life as though it was rigged in her favor.

If she could do that, surely I can too.

Having chronic, invisible illnesses doesn't exactly make me feel like I won the lottery. If anything, it feels like the odds are stacked against me.

But it really is a matter of perspective. I once read that some languages use the same word for "challenge" and "opportunity". It is in our toughest trials that we learn who we really are, how strong we can be, and who will walk by our side through the storms.

We've all heard the story about the carrot, the egg, and coffee beans being placed in boiling water. The carrot softens, the egg hardens, but the coffee beans transform the water. The circumstances are the same, but the outcomes are wildly different.

I want to be a coffee bean.

At Elliot's memorial service, her sister shared Elliot's final note to them (since cancer robbed her of her ability to speak):

"There is nothing sad about this"

I have goosebumps just writing that. What an incredible perspective and person. Her ability to face death with such grace and faith blew my mind. Elliot loved life. She was the woman who walked in a room and lit it up with her smile. She was always the first one on the dance floor. Elliot showed us all how to live and also, how to die.

Thanks to her example, from now on, I refuse to be sad about my diagnosis. This is my life and I choose to believe it has been rigged in my favor. I may not understand why I have these chronic conditions, but that doesn't need to stop me from making the most of them. I will no longer let myself believe that I am hindered by my medical conditions. They are the "challenge/opportunities" the universe has given to me and, damn it, I'm going to find a way to be happy about it!

Tomorrow I'll be profiling a fellow Addisonian who isn't letting this disease run her life. If you know of a Addison's success story or are one yourself, please leave me a comment below so we can share your story too!

Love,

an Addison alien

who now has the song "Happy" stuck in her head and also apologizes because now you do too

Things I Don't Understand

1) Why Jill Duggar Dillard and hubby are "on the mission field" in Guatemala where more than 60% of the population identifies as Catholic and 30% identify as Protestant. Who exactly are they so desperate to convert? That last 10%? They act like they are introducing the Bible to these people. I don't understand!

2) How the internet works. Or wi-fi. Or cell phones. Or bluetooth. I am partially convinced it's magic. I don't understand!

3) Why steroids make you gain weight. WHY??? Normal people make cortisol and don't get all fluffy...why can't our pills work the same? I don't understand!

4) Doctors who pretend they know anything about autoimmune disease. Just admit you don't know and quit wasting my time with your pretend expertise. I know more about Addison's Disease than most doctors I meet. Why? Cause I have it! DUH!?!? I don't understand!

5) Who is voting for Donald Trump? I cannot think of a single person that will admit to voting for him...but someones are! Lots of them! And I really don't understand why!

Love,

an Addison alien

who hopes to be less confused tomorrow

Treat Yo'self

As children, we are taught to trust doctors and nurses. We are lead to believe that they have all the answers and are able to diagnose and treat anything and everything.

Turns out, that could not be further from the truth.

I like to believe all doctors and nurses are trying their best, but all they can really do is make educated guesses, based on what they have learned and seen before. Yes, there are tests they can run that give some "concrete" evidence of what is going on in your body...but tests can be wrong, misleading, or even false positives.

And once the tests come back, there are treatment options. The same medicines that will work for some people, won't work for others. Penicillin cures most people but kills those that are allergic to it.

My point is, there are no clear cut answers when it comes to your health. Our bodies are so complex and the interplay between the various organs, muscles, tissues, etc is an incredibly complex dance that can all fall apart based on one wrong step.

I've spent the past 11 years seeing various doctors, being rushed to the ER, and spending night after night in the hospital. During that time, I've heard SO many theories about what was causing my symptoms. I've been told I have everything from cancer to hypochondria. When a new doctor would ask for my medical history, I would sum it up as well as I could, in between vomiting and crying from pain.

See the problem?

When you are sick, you are bombarded with information and theories and questions. But all you can think about is the incredible pain you are in, which often leads to really strong pain medication. So now you are ill and drugged. Sounds like a great time to make medical decisions that can affect the rest of your life, right?

NOT!

(that was 90's era sarcasm, in case you didn't catch it. You know, cause you're reading this on pain meds)

I have a childhood friend, Melissa, who had her first child 4 years ago. Her baby girl was born with a very serious Congenital Heart Defect (CHD) and has already undergone 3 open heart surgeries. As you can imagine, her immune system is compromised and any illness could literally be life threatening. Melissa has become such an amazing advocate for her daughter. Over the years, I have watched her basically morph into a doctor herself. She has learned everything possible about her daughter's condition, potential treatments, likely complications - you name it, she knows it. She looked at that helpless little baby and she fought for her. She has argued with doctors about the best care, demanded new nurses when needed, and learned to observe every possible symptom in her child.

In addition to all that, she records and organizes everything. She could probably tell you how many times in the last 4 years her daughter has had her blood drawn. Melissa has folders and notebooks and binders and every symptom, every test, every medication, every doctor visit is recorded and filed away, ready to bring to the next appointment or emergency trip.

And you know what? Her daughter is doing freaking awesome. The doctors are blown away by how well she not just survived, but thrived. Her daughter goes to dance and swim classes, preschool, and dances and sings and twirls just like any other 4 year old girl.

I truly believe a big reason why this little girl is doing so well is the fact that she has had such an incredible advocate by her side. One day, it hit me: I need to take care of myself the way Melissa takes care of her daughter.

That idea, of caring for my own body as though it belonged to someone I loved more than anything else in the world, has been life changing. I started collecting and keeping track of every test, dr visit, and prescription. Everything is organized chronologically in a huge binder. I started checking and recording my blood pressure and heart rate every day. I researched and read and researched some more.

I don't have all the answers yet and I still have a long way to go on this journey towards healing that I have been on for years. But things started to improve when I started to improve how I handled doctors and ER visits. I now have a medical ID bracelet, so when I can't talk, I can just point. I keep a doctor's letter on me at all times and the proper procedure for care to give to any medical personnel in the ER. When a doctor wants my medical history, I have that letter and I also have every document in that binder, ready for review.

I've been teased about it and asked if I also suffer from OCD. But every doctor is clearly pleased and impressed. You can almost see them thinking, I wish every patient did this! And the quality of care I receive has increased tremendously.

I think the doctors can tell I'm not f*cking around.

So, fellow aliens and rare disease warriors, take some time and organize a plan for the next time to you're in the ER now, before you are in the hospital. There's an ER letter in the Downloads section on the right of your screen that's a great place to start.

And remember to treat your body like it belongs to someone you love!

It will change your life.

Love,

an Addison alien

who kinda wishes Melissa could be her Mom too

Happy Sunday!

Or as I like to call it,  "Walking Dead day". Here's a little funny to end your weekend.

Love,

An Addison alien

who is very curious how someone in Mozambique ends up reading this blog? 

I 💙 Rumi

Checkmate by Rumi

Borrow the beloved’s eyes

Look through them and you’ll see the beloved’s face

everywhere. No tiredness, no jaded boredom.

“I shall be your eye and your hand and your loving.”

Let that happen, and things

you have hated will become helpers.

---

A certain preacher always prays long and with enthusiasm

for thieves and muggers that attack people

on the street. “Let your mercy, O Lord,

cover their insolence.”

He doesn’t pray for the good,

but only for the blatantly cruel.

Why is this? his congregation asks.

---

“Because they have done me such generous favors.

Every time I turn back toward the things they want.

I run into them, they beat me, and leave me nearly dead

in the road, and I understand, again, that what they want

is not what I want. They keep me on the spiritual path.

That’s why I honor them, and pray for them.”

---

Those that make you return, for whatever reason,

to God’s solitude, be grateful to them.

Worry about the others, who give you

delicious comforts that keep you from prayer.

Friends are enemies sometimes,

and enemies friends.

---

There is an animal called an ushghur, a porcupine

If you hit it with a stick, it extends its quills

and gets bigger. The soul is a porcupine,

made strong by stick-beating.

---

So a prophet’s soul is especially afflicted,

because it has to become so powerful.

---

A hide is soaked in tanning liquor and becomes leather.

If the tanner did not rub in the acid,

the hide would get foul-smelling and rotten.

---

The soul is a newly skinned hide, bloody and gross.

Work it with manual discipline,

and the bitter tanning acid of grief,

and you’ll become lovely, and very strong.

---

If you can’t do this work yourself, don’t worry.

You don’t even have to make a decision,

one way or another. The Friend, who knows

a lot more than you do, will bring difficulties,

and grief, and sickness,

           as medicine, as happiness,

as the essence of the moment when you’re beaten,

when you hear Checkmate, and can finally say,

with Hallaj’s voice,

           I trust you to kill me.

Mirror, Mirror, on the wall, who is the fattest of them all?

It's my Mount Everest - in reverse.

After years on ridiculously high doses of dexamethasone, I switched doctors and medications. I had to start with the equivalent dose of dexa, which was a whopping 25mgs of prednisone.

25 mgs! The "average" Addisonian takes 5 mgs per day.

So we started climbing down that steroid mountain, cutting back by 2.5 mgs each week, with the goal of getting down to 5mgs.

Why 5?

From all the research I have done and anecdotal stories shared with me, 5 mgs seems to be the amount that produces the least side effects.

Side effects like weight gain, especially around the face, on the back of the neck, and in the belly (to the point I get asked if I am preggers on the reg). Or emotional ups and downs that leave me in tears for absolutely no reason, like my eyes are just leaking. Or being more likely to develop osteoporosis and diabetes. Or super awesome rashes that cover my neck and chest and will probably start covering my face soon too.

Because it does not look like I will be getting off this mountain EVER.

Cue the water works.

I have tried several times to take lower than 7.5mgs per day. Each time has put me on the verge of an Addisonian crisis. I have been feeling extremely fatigued and seeing yesterday was a cold and blustery day, I made it a sick day and stayed in bed all day. I thought if there was any day I could take a lower steroid dose, it was yesterday. No stress, nothing to do, no exercise...

And guess what? I woke up today with a rash from the top of my neck to below my breasts. I sent a photo to my doctor (no, not of my boobs, get your mind out of the gutter) and her response basically broke my heart:

"I'm so sorry, but your body will not tolerate a lower dose"

I full on burst into tears (at least I can partially blame the low cortisol) and started putting up the decorations for an epic pity party. I mean, it's just not fair! I know life isn't fair, but if Stupid Dr hadn't put me on dexamethasone and made my body get used to such a high dose, maybe I could handle just 5mgs a day. I spent so long being sick and not knowing why, so to now have a diagnosis and still be sick all the time because of the medications that are keeping me alive are also making me ill: it is so frustrating! I feel like a dog chasing its tail, except dogs seem to enjoying doing that and I'd rather get a full body wax.

As I was fuming and fussing that I will be stuck at 7.5mgs for at least the foreseeable future, if not forever, life decided to whack me upside the head. A friend of mine stopped by, who is like a mother to me, and was comforting me. I said I just didn't want to be fat and feel like this for the rest of my life. She told me that she knows what it is like to look in the mirror and not like what you see - but that is really the least important thing in life.

You see, my friend was badly burned on much of her body, including her beautiful face. I am so used to her scars, I barely even see them anymore and obviously I forget that they are even there...so much so that I whined about "moonface" to a woman whose entire face is scarred.

Ooops.

But being the kind soul that she is, she simply hugged me and reminded me that feeling well is much more important than looking well. Better to take the steroid and side effects than to be in the hospital all the time and eventually die. Because no matter how little I want them to be, those are my only options.

So screw the pity party. Instead, I'll set up camp here, where I can see the bottom of my Mount Everest, even though I can't reach it. And I will hope, and hope, and hope some more that someday, somehow I'll be able to lower my steroid dose and recognize my own face in the mirror.

More than that, I hope to learn from my friend and her scars to handle these physical changes with a whole lot more grace and gratitude.