Book Nerd Problems

AI Awareness: The Wrap Up

This blog, in many ways, is my attempt to "write the book" on Addison's Disease, thyroid disorder, and how to lose weight on steroids. Part of me wishes there already was a book written on all this. While I have found lots of helpful information online (which I am trying to keep track of under Resources on your right), there isn't a "Now You Have Addison's Disease: Here's What To Do Next" handy-dandy book out. There isn't even, to my knowledge, a book for doctors on how to treat Addison's Disease.

Lets pretend that's the reason they screw it up so often.

To wrap up this month of AI Awareness, I thought I would summarize the most important/life-altering/misunderstood info I have learned since diagnosis in a pretty little post.

So without further ado, I present the Top 10 Things You Should Know If You Are Diagnosed With AI (according to me):

10) Emergency Kit - I carry an emergency injection with me at all times and you should too. It is easy to administer and even has step-by-step instructions with pictures inside. If I faint or am knocked unconscious, I hope and pray someone will find this emergency kit and actually administer the life-saving medication inside. Also, many ambulances do NOT carry emergency cortisol injections. Better to have your own and be prepared than to hope help is coming.

9) Medical ID Bracelet - No one will know to check your bag for an emergency injection kit, if you aren't wearing your medical ID bracelet! My bracelet has my name and then reads "adrenal insuff, steroid dependent". I have mine in both English and Spanish. I also recommend getting an ER letter prepared so that you receive proper treatment in a timely fashion.

8) Adrenals Then Thyroid - Often times, thyroid and adrenal disorders go hand in hand. My thyroid problems were diagnosed before my adrenal issues and so were treated first as well. Which caused me to go into about a dozen adrenal crises. Imagine my surprise, when years later, I read a medical study that specifically states one MUST treat adrenal problems BEFORE thyroid issues or risk throwing the patient into crisis. Too bad none of my doctors read that study either. 

7) Diet Does Matter - I have heard every theory in the universe about what to eat and not eat with auto-immune disease. I have had one doctor insist I cut out gluten while another encouraged me to get a "burger and fries". I have read dozens of diet books, health books, and auto-immune protocols. I have tried most of them and I didn't particularly care for any of them. What has worked best for me is eating whole, natural foods. You know, like the kind that grow in the ground, not in a factory. If your Great-Great-Grandmother wouldn't recognize it as food, don't eat it! I try to avoid gluten, grains, soy, diary, alcohol, caffeine, and processed foods (like 90% of the time...then I eat cookies). What this works out to practically is a vegetarian protein shake for breakfast (I like to add chia seeds since they are packed with omegas and other goodies for your body), a salad with a hard-boiled egg for protein for lunch, and salmon with roasted veggies for dinner. Fruit for snacks and dessert. A plant-based, pescadarian diet works for me and I feel so much better than when I was filling my body with carbs and other crap.

6) Water Matters Too - I would have NEVER guessed it, but the kind of water you drink can really affect digestion. I struggled with diarrhea off and on for, oh, the last 10 years. I saw so many doctors and gastros and tried so many meds. Speed uppers and slow your digestion downers and whatever else they could throw at me. The doctors finally just called it IBS (which Is Bull Shit) and I spent years agonizing over what to eat and not to eat to stay feeling well. After finally getting diagnosed and receiving medication, my digestion problems improved drastically but I still struggled with loose stools. I honestly had gotten to the point where I just accepted it as a fact of my life and really didn't give it much thought. Then I started drinking kangen or alkaline water (the kind that is pH balanced for optimal hydration) and was shocked when that problem totally disappeared! If I drink regular water, it starts again. So I am pretty convinced. For my body, pH balanced water is the way to go.

5) Be Skeptical - Double check everything your doctor or medical professional tells you to do. I learned this the hard way, when I was given a dose 5 times higher than I should have been. 5 times MORE! I'm still shocked at this gross over-medication AND that I didn't check the standard dose before agreeing to take it. I hate to say it, but blind trust in doctors is not going to help you when you have rare disease. Run everything by one of the online or Facebook support groups (there are tons!) or shoot me an email. You will find that many others with Addison's Disease are more than happy to help you avoid the same mistakes they made.

4) Zero Days Off - You don't get a "day off" from Addison's Disease. Sure, you can probably get your gut to the point where you can cheat on your diet here and there, but you MUST take your medicines every.single.day. Even missing one day of your regular dose, especially if you are on Prednisone or HC (which cycle out of your system much faster then their longer-lasting, but oh-so-evil sibling, Dexamethasone) can land you in the ER. In addition to carrying an emergency injection, you should carry extra Prednisone or HC pills as well. This way, you can stress dose as needed.

3) Stress Dose - I have had two GPs tell me straight to my face that I don't need to stress dose for Addison's Disease. I have since fired both of them because they were, simply put, totally wrong. Stress dosing is super important and something only you can figure out for yourself. Since we don't have an easy way to monitor cortisol levels (like diabetics can check their insulin levels with a finger prick), you have to guess when your body needs more cortisol. In general, anytime you are ill, injured, or under emotional stress. In reality, you may need to stress dose for an especially long day at work, to exercise, or even after a fight with your partner. Figure out what your body's signals for low cortisol are and stress dose as needed. I've figured out that when I feel light-headed, shaky, and nauseous, I need more cortisol.

2) Fire All The Doctors - Pre-diagnosis to post-diagnosis, I have gone through more doctors than I care to count. I used to feel like I had to accept whatever doctor walked in the door or that my insurance assigned me. Since I am no longer in the States, I have learned that I can pick and chose my own medical team and fire the ones that aren't helping. I have a "one strike and you're out" rule when it comes to doctors. If you give me an incorrect piece of information once, you're fired. My health is too fragile and important to hand it over to doctors who aren't really, really well informed on auto-immune disease (you know, like, more informed than me).

If you are unable to get the kind of medical care or testing you need at an affordable price, because you happen to live in a country that believes making money off sick people is cool, please contact me. My dream is to convert our family hotel into a health center for people with rare disease to come for treatment. Medical care here, without any kind of insurance, is stupid cheap. Like $20 and a one week wait to see an endo, no referral needed. True story. 

1) Supplement Traditional Treatments - I do not know a single person who is thriving with Addison's Disease ONLY using traditional treatments. If you refer back to point number 4, you will realize that I am in no way advocating skipping your medications. However, there are many, many other things you can do to support your overall health, besides taking your prescribed medications. Writing, reading, tap dancing, acting, taking supplements, meditating, and practicing yoga all help me tremendously. I'm obsessed with essential oils and making my own chemical-free health, beauty, and cleaning products. I've completely changed my lifestyle to avoid as much stress as possible. I don't hang out with people who are always stressed out, or complaining, or just emotionally needy in general. I am quite selfish with my energy and who and what I spend it on. And it's great. I highly recommend it.

Love,

an Addison alien

who is excited that almost 4,000 people have already clicked on this little blog during AI Awareness month. That's 4,000 more people than before! 

Happy Arbor Day!

I don't know about you, but I'm all for hugging trees. Let's keep this planet green, eh? Happy Arbor Day! Now get out there and plant a tree.

Love,

an Addison alien

Hello Out There

Cancel the emergency calls, I am still alive! My beautiful friend came for a visit and we turned it into a (much needed) mini-vacation. I enjoyed a week of ignoring emails, responsibilities, and writing, but I am ready to get back into the swing of things.

I'll be back tomorrow with another AI Awareness post to cap off the month.

Thanks to all who have checked in.

Love,

an Addison alien

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

AI Awareness: You Little Schmidt

In case you were wondering what my actual diagnosis is, it is Polyglandular Automimmune Syndrome Type 2 or, for less of a tongue twister, Schmidt's Syndrome.

Try saying either 3 times fast.

According to John Hopkins Medicine, Schmidt's Syndrome is defined as:

the combination of autoimmune adrenal insufficiency (Addison’s disease) with autoimmune hypothyroidism and/or type 1 diabetes mellitus (T1DM)

Thankfully, I do not  have diabetes. However, I do have a form of autoimmune hypothyroidism known as Hashimoto's Disease. It is actually quite common and affects some people more than others. For a fraction of people, Hashimoto's is a devastating diagnosis that forever impacts their lives. Others are able to more or less lead normal lives with proper medication.

I generally put my thyroid issues on the back burner. Compared to Addison's Disesase, it sometimes seems minor in comparison. In reality, thyroid health is crucial; every single cell in your body has a receptor for thyroid hormone. In Hashimoto's, the body swings back and forth from hyperthyroid to hypothyroid. 

I went for over a year without running blood tests on my thyroid function, I was so focused on the Addison's Disease and slightly insane from the mega dose of Dexamethasone. Not great reasons, but honest ones. 

When I finally switched to Dr. Jim and he agreed to run a full thyroid panel, he was shocked at the results. As I have blogged about before, he could not believe I could walk or even get out of bed, that's how low my thyroid levels were. 

I started on a small dose of a T3/T4 medication called Novotiral. I felt better for the first few months, and then my symptoms started returning. I've been told this is normal adjustment. Dr. Jim and I slowly increased my dose to a full pill each day. When we ran my blood work again, everything was in range but my TSH, which was 0.01.

TSH, or Thyroid Stimulating Hormone, has long been the standard for determining thyroid function. Which is pretty confusing, since TSH is made by your pituitary gland, not your thyroid. The pituitary gland is one of the most sensitive glands in your body and creates a precise amount of TSH to stimulate your thyroid to produce the proper levels of T3, T4, and all the other Ts. 

When my blood work showed everything in range but a TSH of 0.01, my first thought was - that makes total sense. If I'm taking thyroid hormones orally, then my pituitary gland doesn't need to tell my thyroid to make any. Seems logical, right? When my Dr said he felt the same, I thought "Great" and put my focus back on reducing my steroid dose. 

My new endo has a different view, one that, as I have researched online, is backed up by the best thyroid doctors. She felt that a TSH of 0.01 pointed to over-medication. That the medicine should support thyroid function, not replace it completely. She called this sub-clinical hyperthyroidism.

The "sub-clinical" part meaning that it would not show on a test (at least not a test of T3, T4, reverse T4, etc) and the hyperthyroidism because even though my T3 and T4 are in range (not high), they are high enough to have made the super sensitive pituitary gland stop producing TSH. 

Without TSH, my thyroid is not working. So even though it is HYPERthyroidism, it is also HYPOthyroidsim, in a way, since my thyroid is not functioning. 

Are you confused yet? Yes?

Good, we're on the same page then. 

I Googled the symptoms of sublclinical hyperthyroidsm, and here's what I found:

- Increased appetite, diarrhea, or constipation

- Increased sweating and heat intolerance

- Nervousness, restlessness, tremors, and difficulty sleeping

- Fast heart rate and fast breathing, even at rest

- Painful lump in your neck or bulging eyes

- Fatigue and muscle weakness


- Decreased or absent monthly periods

BIG yeses to basically all of the above. I don't think my eyes look bulging, but I'm probably biased. 

In case you were wondering why I didn't zero in on these symptoms sooner, here's the list that comes up when you Google low cortisol symptoms: 

- Mental and psychological ailments such as depression

- Faintness and dizziness

- Weakness and fatigue

- Heart palpitations

- Emotional hypersensitivity

- Inability to cope with stress

- Social anxiety

- Muscle weakness

- Headache, scalp ache, or general body ache

- Nausea, diarrhea, and vomiting

- Abdominal pain and hunger pain despite an empty stomach

- Extreme craving for salty foods

- Anxiety and jitters

- Clumsiness and confusion

- Motion sickness

- Insomnia and dark circles under the eyes

- Symptoms of IBS

- Irregular or non-existent menstrual period

Notice any similarities?

You really should, since I put them in bold. 

To fully alleviate these symptoms, I need to properly manage my thyroid, as well as my Addison's Disease. 

Despite reducing my dose of thyroid medication for the last 6 weeks, I had my blood drawn yesterday and my TSH is still 0.01.

I sent the results to my endo and I'm sure she will want to reduce the thyroid medication further and re-test in another 6 weeks. 

It's a long process. And I'd be lying if I said I wasn't over it. 

I'm not trying to complain, just paint a picture of how confusing and discouraging life with Schmidt's Syndrome can be. Some people feel like talking about symptoms is the same thing as whining about them. I feel like if I can't honestly say what day to day life is like, what the last months and years have been like, it's not a true friendship. Why should I have to censor my reality? I have been living with a TSH of 0.01 for almost a year. It's a real problem, with real consequences, that affect me each and every day. 

So are the other conditions which I am more likely to develop, like vitiligo, celiac disease, alopecia, pernicious anemia, myasthenia gravis, idiopathic thrombocytopenic purpura, Sjogren’s syndrome, and rheumatoid arthritis (John Hopkins Medicine). 

So far, I've only developed some minor patches of vitiligo. Here's hoping it ends there. 

Love, 

an Addison alien

who supposes she should change her name to Schmidt's something or other, but really, what sounds good with Schmidt? 

Spiritual Sunday

Hey y'all (imaginary internet audience anxiously awaiting my next post that I pretend exists). I'm taking a break from AI Awareness to celebrate one of my all time favorite authors. Khalil Gibran died 85 years ago today, at just 48 years old. In his relatively short life, he wrote some of the most beautiful poetry I have ever read.

His words have taken on new meaning to me since being diagnosed with Addison's Disease. 

I can't imagine how a man could reach these depths of understanding without experience suffering himself. 

He was also wildly romantic. 

Sigh. 

His writings are so simple yet so heart wrenching in their sincerity. As my high school English teacher would say, there is "no superfluos bull". 

Love, 

an Addison alien

who is trying to cut the superfluous bull by keeping this post short and sweet

AI Awareness: Death From Fun

After stress dosing yesterday and this morning, I feel ready to tackle the day. A day where I will take a yet to be determined number of children to the water slide park.

Please send prayers, positive thoughts, and carbohydrates my way.

I wanted to share this article about a young girl in the UK with Addison's, called The Girl Who Could Be Killed By Fun:

http://daysinhealth.info/the-girl-who-could-be-killed-by-fun-teenager-has-rare-condition-where-her-organs-shut-down-if-she-gets-too-excited/

Quite the title, eh? Whatever gets people's attention.

Love,

an Addison alien 

Who just remembered swimsuits mean shaving. Shiiiit. 

AI Awareness: No Spoons

If you haven't read the Spoon Theory yet, do yourself a favor and scroll down to the right of your screen and read it.

Ok, know what I'm talking about now?

Great.

I woke up without any spoons today. I didn't sleep well and everyone around me has had a cold lately. I've managed to avoid it for a long time with essential oils but I think it's finally caught up to me. I woke up with a fever, headache, sore throat and my rash looks like this:

It's not a great photo but you can see the areas of skin discoloration. Just know it looks worse in person ;)

So I'm going to stress dose and go back to bed ad hope this all passes quick because I have lots of plans this weekend that I really don't want to cancel. 

C'est la vie.

Love,

an Addison alien 

Who dislikes people who share their germs. Keep'em to yourself!

AI Awareness: A Little More Poetry

AI Awareness: When Someone You Love Is Diagnosed With Addison's Disease

1 in 100,000 people will be diagnosed with Addison's Disease, or 10 in 1 million people. You could easily go your entire life and never hear of Addison's Disease, let alone meet someone with it. When your best friend/sister/son is diagnosed with this rare disease, it can be difficult to know how to help.

Your loved one has likely been in and out of doctors offices and hospitals for years (I've read it takes an average of 5 to 10 years to get diagnosed) and has gone through changes in their physical appearance and attitude. They may have exhibited unusual behavior, depression, or fits of anger prior to diagnosis. If you have stuck by your loved one through these difficult years, congratulations!

The sad truth is, most people won't or simply can't. They aren't able to wrap their brains around having an illness that is so difficult to diagnose and so rare that most doctors don't even consider it. It messes with their idea of reality: that doctors have all the answers and if you just do what they say, you will be OK. For some, it's easier to believe that your loved one is lying, self-sabotaging, or in some other way, preventing their ability to get well.

This line of thinking, in my opinion, partially contributes to the fact that most people are not diagnosed until they reach rock bottom. When the majority of your friends and family don't believe you, it's easy to start doubting yourself.

That's why you, dear reader, are so important. You've chosen to believe your loved one when they describe the unrelenting symptoms they face day after day. You've decided that even though someone may be a doctor, they are still a stranger, and you've chosen to listen to your loved one over the opinion of a stranger (no matter how well educated they may be). You've held their hair while they've puked and their hand while they cry. You are awesome.

And now you finally know what's wrong! This is a huge milestone and one, I think, that should be celebrated. Once your loved one is diagnosed and put on steroids, they are generally able to start eating again. As their body replaces nutrients and minerals and hormones it has long missed, you may feel that your loved one starts to seem like their old self.

The hard to swallow truth is your loved one will never go back to being their old self. The diagnosis of a chronic condition means their lives will be forever changed. Each day will be different; even after diagnosis, your loved one will still have good days and bad days. They may have to cancel plans at the last minute or not call you when they said they would or take forever to text you back. You may have to be a better friend to them than they can be to you. 

You should know that your loved one probably feels badly about this. While our bodies are limited by our disease, we can still think of and dream of all we wish we could be. And that generally includes being a more active and involved friend or family member.

You should remember not to take things personally. When your loved one is distant for an extended period of time, it's not you, it's them. Sometimes we need time to work out a new symptom, handle an additional illness, or simply don't have the energy to get out of bed. It usually has nothing to do with you.

You should know that your continued attempts to include and invite mean the world to your loved one; that it probably hurts them more than you when they have to skip your latest gathering or event. Rare, chronic illness can feel incredibly isolating. A simple invitation, even if not followed through on, can be a lifeline when one feels so alone.

You should also know that your loved one is incredibly strong and they will share that strength with you. If you ever have a medical problem, you will not find a better advocate in the world than someone who has already gone down the path of chronic, undiagnosed disease. Your loved one will impress you when they speak to the doctor in terms you thought people only learned in medical school. Your loved one will protect you from making the same mistakes they did. Your loved one won't mind a 2am phone call. Chances are, they are up anyway! And if not, they are eager to repay your kindness and will gladly answer.

Having a loved one with Addison's Disease isn't for the faint of heart. It would make your life a whole lot easier to just walk away.

Be the one who stays.

We are worth it.

Love,

an Addison alien

who would like to thank Christine M. and Kari B. for always standing by me, driving me to the ER countless times, and always answering my call for help, ever since my symptoms started more than 10 years ago. I love you both endlessly. You are bad-ass bitches. 

AI Awareness: All The Feels

Graphic credit: Susan Kaplan

Prior to diagnosis, I was told all I really needed was a good psychologist by countless people, doctors included. Which was frustrating (to say the least), primarily because I had been seeing psychologists off and on since college and they never diagnosed me with anything. In fact, while living in Los Angeles, I tried multiple times to use the public services for mental health and was rejected every time because I didn't meet their criteria. But that didn't stop a lot of people from believing I was making my symptoms up. 

My symptoms were always worse during stressful times, which makes perfect sense because cortisol is the body's stress hormone. My body literally could not handle stress. It was like flooring a car without gas. You just wear that engine/body right out!

When cortisol gets dangerously low, my body responds by going into what is known as an adrenal crisis. This is a potentially life-threatening condition unless treated ie a trip to the ER. 

I have learned, over the years, that if I go in for an emergency shot of cortisol when I start to feel these emotional symptoms of low cortisol, it goes much better than if I wait to be in full-blown panic, bawling, and go into the ER screaming for pain meds. Doctors and nurses don't seem to like that. 

Go figure.

For me, the signal that my cortisol is getting really low is weeping. I start to cry for no reason I can think of and no matter what I do, I can't stop my eyes from leaking. Recently, I started crying in yoga class. I know that yoga poses can release bottled up emotions and I've experienced that too. But this was very different. Leaking eyes is really the best way to describe it. I got out of class and drove to our emergency clinic, where we are on a first name basis. They can even tell it's me just by my voice when I call. When I got to the clinic, I was running a fever and had other indications of an infection. I had not noticed I had a fever and felt fine until I didn't, so I had not taken extra medication, or what we call stress dosing. After a few shots and a good night's rest, I felt much better. 

Ideally, once diagnosed, a person with Addison's Disease will never go into crisis again, assuming they never miss a dose of their medication. But in reality, we must stress dose to avoid crisis to handle common health problems (say a broken bone or the stomach flu) and if you don't take enough cortisol orally, you may end up in crisis. 

Or, for example, you could end up with food poisoning. While most people would be able to handle a night of the runs or throwing up and just let it pass naturally, a person with Addison's Disease needs to go to a hospital for treatment. This is because if you are throwing up, you can't keep down your cortisol pills. Every time you throw up, it stresses your body out. Your body wants more cortisol. If you can't take it orally, you need to get it through a shot and maybe stay on an IV drip. 

It's very important to realize that feelings of panic, helplessness, fear, and anger are due to low cortisol, not your personality. The last time I was in the clinic, after that yoga class I cried through, the doctor on call was very kind and took some time to talk to me as I kept apologizing for crying. He simply told me that the way I was feeling was due to my body being low in cortisol. He said I didn't need to feel badly for crying and that there was no reason to cry. That while I had a rare illness, I was not the only person in the world with Addision's Disease. That we knew what was causing my symptoms and they would subside as my cortisol levels raised. 

After so many doctors treating me badly (I've been accused of everything from faking my symptoms to being a heroin addict/drug seeker), it was very healing to hear these words from a doctor. While I knew logically that I would be ok, reason seems to fly out the window when my cortisol is low. I needed to hear some reassurance that I would not continue to spiral into crisis. The days of going into an ER and not knowing why I was feeling the way I was, or what to do to treat me, are over. 

Thank goodness!

Love, 

an Addison alien

who thinks the emotional effects of low cortisol are just as bad as the physical ones

AI Awareness: A Little Poetry

CML, I don't know who you are, but it seems we have a lot in common.

Love,

an Addison alien

Who is grateful to have more good days than bad

AI Awareness: Down & Up

Addison's Disease is considered by many to be in invisible illness ie you can't tell I'm sick just by looking at me. I suppose that is true, although my physical appearance has changed enormously since I got on this roller coaster ride called adrenal insufficiency. The weight gain and specifically where that weight is placed has lead to a number of people not even recognizing me. So for today's post for Adrenal Insufficiency Awareness month, I thought I'd describe and show the changes my body went through and continues to go through.

I'm reusing this from a previous post so that one picture wasn't last week...it was like 3 months ago when I was on a higher dose of Prednisone than I am now. I look soooo swollen.

The standard line from most doctors is that steroids taken at a replacement dosage will not cause excessive weight gain, "moon face", "buffalo hump"(fat deposit on the back of the neck), or other Cushing's symptoms (Cushing's Disease is basically the opposite of Addison's Disease; the overproduction of cortisol).

The problem is that there is no exact way to measure the ideal replacement dosage per person. The doctors can estimate based on weight and height but every body is different and every body responds differently to steroids. Plus there are a few different kinds of cortisol replacement steroids and people usually respond differently to each medication.

This was taken post-diagnosis, I remember thinking I was looking a lot better having gained some weight. In retrospect I look tiny!

When I was finally diagnosed I weighed about 85 lbs and many people and doctors thought I had an eating disorder. In fact, they wanted to send me to a rehab center for eating disorders and I was so sick and confused, I packed and agreed to go.

Note: I saw one website that listed "anorexia" as a side effect of untreated Addison's Disease. This is because cortisol plays a big part in digestion and if you are very low in cortisol, your weight will likely drop and drop. Many fellow Addison aliens I have connected with were also very thin pre-diagnosis and then gained, on average, 50 lbs when put on steroids. I don't think this is a correct usage of the term "anorexia" and believe eating disorders are very serious and am in no way trying to make light of them. 

I had these photos taken post-diagnosis, as I tried to re-gain weight. I promised myself I would love my body at any size. I think I was around 95 lbs when I had these photos taken.

At this point, I had found a few thyroid support groups online, as that was all I knew for sure I had an issue with at that time. Someone on one of those pages also had Addison's (if you have one auto-immune disease, you are much more likely to have another and thyroid and adrenals are especially linked) and sent me a graphic of what happens to people without treatment for Addison's Disease. It ended in organ failure and death. That person commented that they were worried that I was approaching that point and if I went to this rehab center in the middle of nowhere and did have Addison's, did they have cortisol on hand to treat me? Crying and confused and very scared, I called the rehab center to ask.

They didn't even know what cortisol was.

I was so thin, you could count my vertebrae from a mile away. And this was after gaining 10 lbs!

I remember calling my Dad then and telling him I felt like I was going to die and the doctors were just going to let me. That they didn't believe that there was anything really wrong with me (the "it's all in your head" bs that I heard for so long) and I didn't know what to do. I was too sick to think straight and it seemed everyone I was asking for answers didn't have any.

My Dad and that online poster saved my life. He started calling hospitals in my area until he found an endocrinologist who would see me right away. Since I was all packed up to go to rehab, I just threw my suitcase in the car, assuming a long hospital visit would follow.

The endo took one look at me and confirmed my hunch that I had Addison's Disease. He then took some time to look through my previous test results and medical history and only found further and further evidence of Addison's Disease. I was immediately put on Prednisone and a tranquilizer. I had lost so much calcium from my bones that they were worried even walking around would cause some kind of serious injury. I spent the next two months basically on bed rest and heavily drugged. My only job was to take my medications, eat, and weigh myself. I slowly but surely got back to 100 pounds.

I was super excited when I finally got back to 100 lbs. Little did I know the weight would keep coming!

I then made a very unfortunate choice in doctors and listened to a doctor who thought dexamethasone would be a better medication for me than prednisone. He claimed that it had some properties similar to a medication used to replace aldesterone (another steroid the adrenals create) called Florinef that is not available where I live.

Here's what I looked like when I started on dexa:

And this is what I looked like as time progressed. I'll let the pictures speak for themselves:

I don't dress like this, it was for a play and the only full body shot I could find. From then on it's only pics of my face.  

I just realized you can see my "buffalo hump" in this picture, it's so big!

After switching doctors yet again, I was able to transition back to prednisone and have been reducing the dose ever since. I am now on what we think will be lowest dose my body can handle: 5mgs/day.

In this first week on the lower dosage, I've already lost four pounds.

In this down and up journey, I am excited to be going back down.

Go ahead and google "prednisone face" and you'll see I'm not alone in this. Many, many people experience significant side effects from any dose of steroids.

But we'll take it to stay alive.

Love,

an Addison alien

who wants to thank every person who takes the time to read this: Thank you!