AI Awareness: What I Wish I Knew

If there is one thing I wish I knew when I first diagnosed with Addison's and Hashimoto's Diseases, it is this:

And do not worry that your life is

turning upside down.

How do you know that the side

you are used to is better than the one to come?

~ Rumi

Losing Weight on Steroids: 15 lbs Down!

Yup, you read that correctly. In the last 6 weeks or so, I have lost 15 lbs!

The biggest factor in my weight loss is probably the reduction of Prednisone from 7.5mgs/day to 5mgs (down overall from 25mgs/day!). It seems to me that getting on the lowest dose of steroids that your body can handle is key. Of course, you don't want to be getting too little cortisol either. So be careful and be sure to work with your medical professional before adjusting your steroid dose.

When I was on 7.5mgs, I still had cravings for sweets, which was weird for me, since I never had a sweet tooth before starting steroids. If you have read my earlier posts, you know I was obsessed with cookies and flan for awhile there. I am happy to report that, without my even trying, I stopped eating sweets when I lowered my dosage. The cravings went away completely! No longer eating about 300 calories of cookies each day might be helping too ;)

Otherwise, my diet hasn't changed. I'm still drinking Vega protein shakes with chia seeds for breakfast and then sticking to a plant-based diet the rest of the day. I avoid gluten, soy, caffeine, alcohol, and pretty much all processed foods.

This may sound hard, even impossibly hard, but the transition is really the only difficult part, Now that my body is used to receiving "real food" (as I like to call fruits and vegetables), it's no problem at all. Junk/processed food starts to taste differently (and not in a good way). I've indulged in a few of my former favorite treats and none of them really tasted that good anymore. Each time, I realize that I am not missing out on anything and next time I am faced with the same temptation, it's a lot easier to go for the healthier option.

For exercise, I practice yoga at least one hour a day and take tap dancing a couple times a week. I have a FitBit and try to meet the daily goals set there as well: 10,000 steps per day, 10 flights of stairs, and 30 active minutes.

It's a lot of small changes that are adding up to major changes on the scale for me.

Just 15 more pounds to go!

Love,

an Addison alien

who knows sometimes no matter what you do, you just can't lose weight on a high dose of steroids. And that's OK too.  

AI Awareness: Medic Alert Bracelets

I'll be honest with you, 

(if you haven't noticed yet, I usually am)

I first thought getting a medical alert bracelet was going overboard. Here's what went through my head. 

I was all like, what? No, medical alert bracelets are for people with life-threatening illnesses or allergies, like that boy in My Girl. Why didn't he have a bracelet? Why did he go back and get stung by all those bees. Ugh, that is the saddest movie EVER. Anyway, I'm good. I just have Addison's Disease...and a tendency to go into adrenal crisis, which is, oh yeah, a life-threatening condition requiring immediate medical care. Hmmm,ok, well, maybe it's not a bad idea. After all, I don't want to end up like that poor boy stung to death by bees. 

Yes, that is how my mind works. Fascinating, huh? 

After posting on a few Addison's support groups online and looking at various websites, the majority of the advice was to YES, absolutely, get a medical alert bracelet and right away.

The main thing that convinced me was thinking that I could easily be in a car accident and be found unconscious and unable to communicate my diagnosis and needs. Without a steroid injection, I could die and the medics would just be sitting there, scratching their junk, like, huh, what the hell just happened? 

There are a number of places online where you can order medical ID bracelets. Depending on where you live, it can be difficult to find the one you need. I've seen some people even get their medic alert done as a tattoo! 

If you'd like something a little less permanent, Karen Zeall, of the awesome Facebook page "Addison's Disease-Rare+Life Threatening Illness" had bracelets made up for us! How cool is that!?!? And they are purple, my favorite color!

The bracelet's read "Addison's Disease" on one side and "steroid dependent" on the other. Karen found it very difficult to find a medic alert bracelet. Knowing she probably wasn't alone, Karen was kind enough to have a bunch of these bracelets made and is willing to ship them around the world. 

She is charging just 2.99 English pounds (I am on an American keyboard and don't know how to make the pound sign???) with free postage in the UK! If you aren't in the UK, she will still ship to you, all you have to do is Paypal her the cost for shipping. Easy peasy and a waterproof, long lasting bracelet will be on its way to you. 

For the cherry on top, Karen is donating 50 pence of every purchase to the UK Addison's Disease Self Help Group. Pretty great, right?

I'm ordering mine today and you probably should too. Just comment below or message Karen through her Facebook group online. 

Love, 

an Addison alien

who thinks medic alert bracelets get you better treatment at ERs too

Dreams Do Come True

I got some great news recently (which I hinted at in yesterday's post). It happened sooner than I imagined.

I am thrilled to be able to share with you that one of the posts I wrote here has been published on the website The Mighty!

If you don't already read The Mighty regularly, I can't recommend it enough. You can check out my article here.

My main goals in writing are to help others and spread awareness. I am so thankful to The Mighty for helping me do both.

Love,

an Addison alien

Who would kind of like to never submit her writings again, so as to maintain a 100% submit to publication rate ;)

AI Awareness: Don't Call Me Crazy

Imagine waking up in incredible pain. It feels like someone is stabbing you in the stomach. Suddenly, you are nauseous and try to race to the bathroom. When you get out of bed, you almost hit the ground. You see spots, colors, and shapes dance before your eyes as you steady yourself. Before you can reach the toilet, your body starts to release everything in it. In between bouts of vomiting and diarrea, you try to catch your breath and stop your heart from racing. As breathing becomes more and more difficult, you feel the walls begin to close in on you. You feel like you are leaving your body. You become convinced you are dying. The tears start to fall as your hands and feet go numb and you realize you are hyperventilating.

You manage to get help. Your partner, friend, child, whoever happens to be there, throws you in the car with a few plastic puke bags and drives as fast as they safely can to the ER.

As you approach the all-too-familiar site of the emergency drop-off, you try to calm yourself. You've been here before. You know the drill. They will poke, prod, x-ray, run tests, then finally say you must have some kind of bug and send you home. There's nothing "really" wrong with you, they will say.

Except this time is different. This time, when they can't find anything "physically wrong" with you, they send you to psych. They put you on a "hold" so you can't leave even when you want to. You are left in unbearable pain, still vomiting, still crying, without any medical intervention. You are told it's all in your head anyway. Perhaps you are diagnosed with severe depression or another mental illness and prescribed anti-psychotics. They only make you feel worse.

This happens over and over again, until finally, one day, you stumble across an article online about Addison's Disease and once again, can't stop the tears from falling, but this time from happiness. There are others who have gone through the same things you have. There is a disease that is missed by doctor after specialist. It describes you perfectly.

You make an appointment with an endocrinologist, a word you'd never even heard of before (because the hospital kept referring you to gastroenterologists, and then, psychiatrists).

Finally, you have an answer. You believe you will never be treated so poorly by medical professionals again.

And then you have another adrenal crisis. This time you are traveling and have to go to a different hospital. They don't know how to treat Addison's Disease, and once again, you find yourself in a psych ward.

Does this sound impossible to you? Do you think "not in my country"? Well, I'm here to tell you this happens and all too often.

I have heard countless stories that go the way of the tale I wrote above. I have experienced similar treatment myself. Some of the hardest days of my life were in a hospital that insisted on treating me for depression instead of adrenal crisis. I eventually got better, since I still had some adrenal function, but not because of the treatment I received. My body was eventually able to raise it's own level of cortisol, after days of being left in a bed with no medication beyond tylenol.

I have written before of the psychological side effects of low cortisol. Unfortunately, most doctors are unaware that these symptoms are caused by Addison's Disease, not the patient.

A 2012 case study, which you can read here, states delirium is a neuropsychiatric side effect caused by low cortisol. And that's not all:

An array of neuropsychiatric symptoms is associated with AD. Addison is quoted as saying in 1855 that AD patients might present with “attacks of giddiness, anxiety in the face, and delirium.” Anglin et al also noted four case series published in the 1940s and 1950s that found the prevalence of neuropsychiatric symptoms in AD to be between 64 and 84 percent. Iwata et al reported that in some cases, the neuropsychiatric symptoms were the initial and sole presentation of AD, even though such symptoms are more common in the late course of the disease; this might lead to a patient initially being misdiagnosed, as it did in our case, and in turn, incorrectly treated. Neuropsychiatric symptoms of AD include, but are not limited to, depression, lack of energy, and sleep disturbances. During an Addisonian crisis, agitation, delirium, and, in some cases, visual and auditory hallucinations are reported.  

I write this blog because I love to write. But more than that, I write in hopes of raising awareness about Addison's Disease and thyroid disorders. Too many people suffering from these conditions are mistreated by doctors and nurses. Not to mention friends and family.

To be clear, an Addisonian or adrenal crisis is "a medical emergency and potentially life-threatening situation requiring immediate emergency treatment." For doctors and other medical professionals to so often mis-diagnose, and then, so often mistreat those in a crisis, is simply unacceptable. There's no other word for it. 

We Addisonians deserve respect, proper care, and understanding that the neuropsychological symptoms present are actually normal during crisis and will subside as cortisol levels rise. 

And I'm going to keep writing until we get it. 

Love,

an Addison alien

who was contacted about a great opportunity to raise awareness and hopes to share the exciting developments with you soon

The Easy Way

One year ago today, I quit drinking for good and it was one of the easiest things I've ever done.

Since this is a leap year, it's actually been 366 days instead of 365, for which I feel I deserve some kind of brownie points. 

I keep starting and stopping writing this post. To be honest, I don't really want to share this part of my life with the world (because the entire population of planet Earth is sure to read this). It's private, it's personal, it's embarrassing, and, well, it's MINE.

In the 10 years or so that I went without a diagnosis, I self-medicated with alcohol like crazy. I drank to feel better, to have energy, to be able to socialize, to sleep, to lick the hair of yesterday's hangover. I drank too much, too often. There were many times that I attempted to stop and found it oh so hard.

Possibly because I was surrounded by people whose social lives revolved around drinking. That's just what we did:

Let's go to a club!

Meet you for a drink?

Happy hour's on me!

Anyone up for champagne brunch?

I knew for a long time that I had an unhealthy relationship with alcohol and tried to cut back or quit often. I remember sitting in bars and being like, but I'm trying to quit drinking! And finding it so difficult and miserable.

I believe that is called setting yourself up for failure. 

When I was very ill pre-diagnosis, drinking was out of the question. I could hardly stomach food, let alone alcohol. I went for about a year without drinking then, and because even the smell of alcohol was enough to turn my stomach, I found giving up drinking very natural to do. I remember when my fiance and I broke up, I thought "If I were ever to have a drink, now would be the time". But I was still so sick, it held no appeal to me. I truly thought at that time that if I could get through that awful break-up without alcohol, I would never drink again.

Fast forward a few months and I've been diagnosed and on bed rest for weeks. I'm bored to my bones and I am finally feeling well for the first time in years. I have recently switched to Dexamethasone, aka the demon drug, which floods my body with a manic, careless, wild, sometimes angry energy. I start hanging out with the local drinkers. I try to keep up. It's ugly.

I don't remember where I heard it, or saw it, but the quote will ring in my mind forever.

"You will become like the 5 people you spend the most time with"

I looked at the people I was hanging out with. All older than me. All clearly struggling with alcohol. All with other addictions as well. None with a clear purpose in life besides drinking. None who had accomplished anything of note. I don't want to disparage these people anymore than they do to themselves, so suffice it to say, I knew instantly that I needed to make a change.

For me, quitting drinking started by quitting my drinking "friends". Considering we could not find a thing in common besides drinking, "friends" seems a bit of an exaggeration.

Having received a diagnosis and receiving medication, while entirely too much of it, was also a huge factor.

The next step for me was starting to practice yoga regularly. They say yoga brings you back to your true self. Or, as I once read, "smoking [substitute for drinking or any other self-harming behavior] won't interfere with your yoga, but yoga will interfere with your smoking [or drinking, etc]". I learned that many yogis and yoginis do not drink, as alcohol is a form of poison, and many yogis and yoginis follow the teaching to not put poison in their bodies. Wow, I thought, there are tons of people out there who don't drink and don't consider themselves alcoholics. How interesting!

The seed was planted but I still relied on booze in social situations and to sleep.

The final step was hearing about the book "The Easy Way to Control Drinking" by Allen Carr (ironically enough, at the yoga studio).

At this point you might be thinking - why not just go to AA?

I find there is a lot of judgement tied up in certain titles, like alcoholic. It's not one I care to carry. Mostly because it doesn't make any sense to me. Dr. Carr explains it best when he writes:

How will they know they have quit for good if they have to use willpower to resist temptation? Don't alcoholics talk about how long they have been dry? Don't they make statements like 'I'm just one drink away from being drunk!' and recommendations such as 'take each day as it comes'  or 'take one day at a time'? Don't they say there is no cure for alcoholism and that they are still alcoholics, even when no alcohol has touched their lips for twenty years? How will they know if they have indeed kicked it, until they die? And how will they know, once dead?

Make no mistake, I have nothing but admiration for their willpower, but do you really want to go through that misery? Perhaps you still believe there is no alternative."

That's where I was. I truly thought that I would feel deprived and uneasy without alcohol. I didn't imagine that feeling would ever go away (it does). Like you, I had so often heard a member of AA go on and on about how hard it is, how close they are to picking up the bottle again, how it is a lifelong struggle.

Like Dr. Carr says, who would want to be a part of that misery? Certainly not me.

But he also says there is another way.

You might be surprised to learn that his alternative essentially states that there is no such thing as an alcoholic. He thoroughly explains his reasons behind this in his book, taking apart each alcohol myth one at a time and removing the "brainwashing" or beliefs we are taught behind it. I found a good summary in the article, "Hi. My Name Is Holly. And I'm Not An Alcoholic (Because There Is No Such Thing)". Holly writes:

"Don't get me wrong - like all drugs, I believe that alcohol is addictive, that addiction is a progressive disease, that some people are wired a bit differently and more vulnerable to addiction, etc. I'm not refusing scientific fact or what is. I just firmly believe that we've created a separate disease called alcoholism and forced it upon the minority of the population willing to admit they cannot control their drinking. That instead of looking at how insane it is to consume the amounts of alcohol we do in this country on any level, we've instead systematically labeled anyone who can't hang in that insanity as having the problem...
It asserts that it's normal to consume an addictive substance with ease, and abnormal to not be able to. Hi, backwards thinking. The other night, a dear friend who stopped drinking some 90 days ago posted that "she has a body that cannot handle alcohol" to which I replied "NObody has a body that is meant to handle alcohol." And that is 100% true. Alcohol is a drug, an intoxicant, and no human body is designed to tolerate it with ease. Just because we as a society have come to believe that tying one on or relaxing with a glass of wine or drinking to such excess that we puke is normal doesn't mean that it's what we are supposed to do or designed to do. Doctors smoked in the 1950s and suggested it to patients, even appeared in cigarette ads endorsing their favorite brand. Just because they did that doesn't mean they were right. It just means that we accepted it as being right. It just means we didn't question."

I know that there are probably millions of people for whom the AA method works. And I think that's great! For them. But it's not for me.

I don't need to use the willpower method praised in AA because I no longer have a desire to drink. It no longer interests me. I spend hours a day sitting in an office where we sell beer, wine, and tequila. I used to be tempted to have a drink as the day wound to a close. Now, I still see the alcohol every day but I have no desire to drink any. It doesn't take an ounce of willpower and I certainly don't feel like I am missing out.

I don't need to go to a meeting each day and receive encouragement to make it through Day XX of no drinking because I rarely think of drinking, and when I do, it's only a smidge of sadness that I didn't stop sooner.

Most of the time, I have no idea how many days I have gone without drinking. There is an app on my phone that keeps track of it. I check it from time to time out of curiosity. That's how I knew my one year "anniversary" was approaching. Otherwise, I would have had no clue.

Seeing others drink doesn't make me want to drink. If anything, it reinforces why I don't want to touch alcohol ever again.

I don't feel like being the non-drinker should make me the unicorn in the room. Not drinking is our natural state. To drink, to deliberately poison one's body, is abnormal.

So yeah, I don't drink anymore. And stopping was one of the easiest thing I've ever done. Because it was simply returning to who I have been, deep down, all along.

Love,

an Addison alien

who looks forward to many more hangover-free years to come