Thursday, March 31, 2016

A New Dawn


I can't believe I am writing this, but here I go: I am on Day 4 of just 5mgs of Prednisone and I feel fine! Granted, I got to lay around all morning and didn't get to the office until around noon but it takes time to adjust so if a slow start is what my body needs, I am more than happy to comply. I really think my body is going to do well on the lower dose this time. It feels like a mini miracle, after trying at least 3 other times to cut down my dosage and running into problems every time.

It feels like a new dawn, a fresh start, a clean slate, and any other cliche you can think of.

Love,

an Addison alien

who hopes your wishes come true too

Wednesday, March 30, 2016

Mind > Matter


It's so cliche, I can barely type the words...

but it's SO true...

mind over matter.

Today, I am on autopilot. I am mentally willing myself through the day and I'm totally ok with that.

I woke up this morning with that old familiar feeling of "omg, I can't possibly get out of bed". But I promised myself I would go to yoga and the market before work this morning, so I just made myself get up.

To make myself move, I reminded myself how blessed I am every step of the way.

I am blessed to wake up in this warm, comfortable bed, in my lovely home. 

I am blessed to  have clean clothes to wear. 

I am blessed to have a car to drive to the yoga studio.

I am blessed to be able to practice yoga with beautiful teachers. 

I am blessed to have all my body parts and limbs intact and uninjured. 

I am blessed to chose to exercise for my benefit, rather than be forced into manual labor. 

I am blessed to be able to buy all the healthy foods I can carry. 

Taking this attitude, I've made it through a pretty intense yoga class, a trip the local market (it's high season around here so everywhere is packed and there is no longer such a thing as a simple trip to the market anymore.), and I'm settling in for long shift at work. 

Even though I could not imagine making it through the day I had planned when I first woke up this morning, I am actually feeling pretty good now. Gratitude is an amazing thing. 

And I'm still on just 5mgs of Prednisone! If I start to feel shaky later today, I'll take more, but if not, I'm calling this Day 3 on 5mgs!!! I feel like my body is going to be able to make this adjustment after all and for that, I am super grateful. 

Love, 

an Addison alien

who would like to end with another cliche: count your blessings






Tuesday, March 29, 2016

Rebel Without An Ounce of Energy


I've decided to do what I do best: completely ignore my doctor's advice and do things my own way. 

(I'm not saying you should too...please do not take this as advice!)

If you've been reading along here, you know I've been trying to cut my dose of Prednisone down. Way, way down; from 25mgs/day to a goal of 5mgs/day. I've been stuck at 7.5mgs for a few months now and while I  have been able to lose some weight and see a reduction of the other side effects from taking steroids, my inner compass has been telling me to get down to 5mgs. For some reason, aka hours of research online, I am convinced the side effects will really start to reduce at this dosage. 

The problem is that my body got used to such high doses of steroids for so long, so every single time I have tried to cut back to 5mgs/day, something has gone wrong and I've teetered on the edge of an adrenal crisis a few times. I haven't had a crisis in over a year and try to be very careful to not have another. But that hasn't stopped me from wanting to reduce that steroid dose. 

My endo recently told me she did not think my body could handle just 5mgs/day. BUT this was before an underlying infection was diagnosed, so the reason my body couldn't tolerate 5mgs was very likely the fact that I was ill and therefore actually needed more steroids, not less. 

So I've decided, on my own and against medical advice, to try to cut back one more time. Call it a "hail Mary". If this time doesn't work, I will let this idea go. 

I hope.

I made sure that I am healthy, have a low-key schedule, and can rest a lot, as my body tries to adjust to this lower dose. Last night, I slept from 9pm to 7am, only waking up twice and restless 28 times (that's good for me, I often get closer to 50 wake-ups/restless per night) and I have still been exhausted all day. I'm basically just trying to get through each hour at a time, knowing that I can go back to bed soon-ish. 

I am hopeful that in a couple days my energy levels will pick-up and my body will adjust to this lowered dosage. If not, I'll just have to go back to the higher dose. 

AND FEEL FAT FOREVER.

So keep your fingers crossed for me, fellow shit creek survivors. 

Love, 

an Addison alien

who is determined to make this time stick


Sunday, March 27, 2016

7 lbs Down & Counting!

That's right, kids - I am actually losing weight on steroids!

Maybe mermaids and unicorns are real too? Because, people, the impossible is losing its "im". I have tried and tried and tried and tried and really, really tried to lose weight on steroids before and I felt like a hamster on a running wheel. NOTHING I did made a difference. I would only eat 1000 calories a day and gain weight. It was frustrating, to say the least. More like infuriating.

Since dialing down my steroid dose and treating my thyroid, dieting and exercise actually seem to be effective once again. I am so grateful!

Here's what is working for me:



I'm loving Vega protein shakes for breakfast. It's a well-known fact that skipping breakfast slows your metabolism - and you should take your steroid with food. But I hate eating in the morning. I've never been hungry when I wake up and I don't care to force feed myself. Vega protein powder is the perfect solution. It is vegan, gluten-free, and has tons of your daily greens (along with, of course, protein). If you use with water, it's just 170 calories per serving! I've been adding chia seeds to my morning shake for the omegas.

Here's a great way to check if you are getting enough omegas: feel the back of your arms. If you feel a bunch of little bumps, like "chicken skin", you need more omegas! A couple spoon fulls of chia seeds each day will get you back in balance. I prefer chia seeds to omega pills made from fish because I think they fish tasting ones are gross. Especially the ones that make you burp. Ewwww. 

For lunch and dinner, I try to stick to a plant-based, vegetarian (baconarian/pescadarian to be precise) diet. That means no gluten, dairy, soy, carbs, or processed foods. A typical lunch for me would be a salad or fruit, followed by a dinner of steamed vegetables and fish.

While I don't drink alcohol or caffeine, I always allow myself a small treat or dessert to end the day. I'm trying to find a healthy treat that takes care of the cravings, but for now I'm really obsessed with white chocolate macadamia nut cookies and eat one every day. For me, that's balance and helps me avoid binge eating because I feel deprived.

Lots of loose layers covers the bulge...cell phone covers the double chin...I almost look thin again!
I have my FitBit (pictured above - I use the Charge HR), so I always know how many calories I have left in my daily "budget" (and so that I make sure to leave enough calories for that nightly cookie!). It also helps me move, by encouraging to hit my daily goals of 10,000 steps, 30 active minutes, and 10 flights of stairs.

I practice yoga and meditation (almost) every day, as well. For cardio, I take tap dancing class twice a week and tap on my own when I can.

I also make sure I drink at least 3 liters of water every day.

There are a few other tricks that are helping me along this journey towards health; a detox tea, a special kind of water, and my multitude of supplements. I'll highlight each of these in future posts. So stay tuned!

Love,

an Addison alien

who thinks no food tastes as good as fit feels...except for white chocolate macadamia nut cookies

*I am not receiving any kind of kick back from Vega or FitBit, I just really like their products. If they would like to send me free items, I welcome them with open arms!*





In case...


Love, 

an Addison alien

who can't think of anything clever to say today to save her life

Friday, March 25, 2016

Running Wonder


Meet Suzi, a fellow Addison alien, who is refusing to let this disease run her life.

Instead, Suzi took up running after her diagnosis and has only been training consistently for the last year or two. In that time, she has ran multiple 10ks and has completed 4 half-marathons! For support, she runs three times a week with a local club. 

I know what you're thinking: "Oh great, she has Addison's and can run marathons and I can't even get off the couch. I feel MUCH better now!"

To which I say: calm down! 

(you know how bad stress is for us Addisonians)

No matter where you are on your journey with Addison's Disease, Suzi is a stellar example of how you can run your own life. It might not feel like it today. But like all journeys and marathons, we all start with a single step. 

Step 1: Get off the couch and walk around the house

Step 2: Walk to the mailbox

Step: 3 Walk around the block

You see what I'm doing here? Little by little, step by step, you too can accomplish whatever it is you want to. We so often see the final goal as so far away and unattainable, instead of setting small, easily attainable goals and celebrating each step forward.

Of course, with a serious condition like Addison's Disease, you need to take steps to make sure your body can handle the physical stress of exercise. Suzi says her steroid levels are low after every run and she stress doses as needed. After a really long run, it may take her a few days to recover. But she doesn't let these small sacrifices stop her feet from hitting the pavement, week after week. 

And she doesn't think having Addison's should stop you from living the life you want either. "My last bit of advice", Suzi writes, "is that, yes, we all do have Addison's...but we only get one life and we are blessed because we get our second chance at it. Live each day and set goals to achieve them. 

Our disease doesn't dictate out lives, 

WE DO."

I couldn't say it better. Thank you for sharing Suzi, you inspire me! I hope your story will also encourage others.  

Love, 

an Addison alien

who would love to hear your Addisonian success story too

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

Thursday, March 24, 2016

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







Wednesday, March 23, 2016

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

Tuesday, March 22, 2016

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













Sunday, March 20, 2016

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? 

Saturday, March 19, 2016

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.

Thursday, March 10, 2016

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.