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!

AI Awareness: Doctors Aren't Always Right

Before I start, I just want to make it very clear that I am not recommending ignoring your doctor or medical professional's advice. 

As the post I wrote on why Waking Up Is Hard To Do made the rounds on Facebook yesterday, I started receiving some great suggestions from others. Through this journey, I have learned that you can gain as much wisdom from other people's experience as you can from doctors. People who also live with Addison's Disease and Hashimoto's Disease, as well as other auto-immune conditions, have become one of my greatest resources for learning how to best manage my health. 

One comment I received repeatedly was to take a small (1mg) amount of Prednisone before going to sleep, so that I'm not going to bed completely on empty. Others say that in their experience, this has helped them have some energy in the mornings and makes waking up easier. 

Others suggested splitting my Prednisone dose over the course of the day (3 mgs in the morning, 1 in the afternoon, 1 before bed) to closer imitate a natural circadian rhythm. I've checked with my endo and she has no problem with me trying this, so starting tomorrow, I will split my dose and see if I notice an improvement. Although since it comes in a 5mg pill, I will be estimating the dosage. 

I also heard from a number of people who combine their steroid and thyroid medication. This would make my life so much easier, and is what I was doing before, so I'm leaning towards that. My endo wants to see if there is a difference in my blood work when I am taking the thyroid medication by itself, so I figure that's fair enough. I'll stick it out for a couple more weeks until my next blood draw and go from there. 

If you are not already a member of Facebook support groups for your rare disease, I highly recommend joining. Doctors are great but unless they also have your condition, they simply can't understand what it is like. Since you will rarely meet others in your day to day life with  your illness, connecting online is a great alternative. 

Remember, you are your own best advocate! 

Love,

an Addison alien 

who is grateful for all the advice and support she has found online

AI Awareness: Why Waking Up Is So Hard To Do

April is Adrenal Insufficiency Awareness month. 

This is the first in a series of posts to share how my life is affected by Addison's Disease.

Why do we wake up each morning? 

Don't worry, I'm not try to start some kind of existentialist debate on the meaning of life. I'm talking about the physical reasons. I used to assume it was because our bodies had enough sleep (or the alarm went off). Since being diagnosed with Addison's Disease, I've learned that one major reason our bodies wake up in the morning is the production of cortisol. 

In a person with a healthy circadian rhythm, cortisol is lowest in the evening, helping your body relax and signaling your brain that it is time to sleep. As you rest, your adrenal glands get to work producing cortisol and other life sustaining hormones. Around 5am or 6am, most people's cortisol level is at its highest. This triggers your brain to begin to wake up and start the day. 

But for people with Addison's, our bodies produce very little, if any cortisol. We have to take cortisol pills, called steroids, to replace what our body should make. So after going to bed at night, our cortisol levels continue to fall. When a healthy person's cortisol levels would be at their highest, ours are at the lowest - since we've been sleeping and therefore not taking any steroids.

Our brains don't get that cortisol wake-up call. If anything, as our cortisol levels drop, our fatigue gets worse and worse. When I wake up, I generally feel completely and utterly exhausted. I know I need to give my body cortisol to get going. 

Here's where it gets tricky. 

I also have Hashimoto's Disease, which affects the thyroid. The medication I take for this must be taken when I first wake up and cannot be mixed with any other medications. I am not supposed to take my steroid for one hour after taking my thyroid medication. My doctor recommended I take my thyroid medication at 7am and my steroid at 8am, which sounds great in theory. 

In practice, it is very challenging for me. I'll use this morning as an example. 

I have been very tired this week as I am transitioning to a lower dose of steroids, so when that 7am alarm went off, it took just about everything I had to wake up enough to take my thyroid medication. I was so exhausted, and obviously very low on cortisol, so I just rolled over and went back to sleep. When the 8am alarm went off to take my steroid, I must have woken up enough to turn off my alarm, but I don't remember doing it. 

Next thing I knew, it was almost 10am! 

And I felt awful. By that time, my body had gone more than 24 hours without a dose of steroids. All my "warning: cortisol level reaching dangerous limits" signs were there: sharp pains in my abdomen, feeling like I was going to vomit, shaking, feeling freezing cold while sweating profusely, heart racing, and this rash that appears across my neck and chest. 

I took my steroid medication right away and laid back down to wait for it to kick in. It takes about 45 minutes for the cortisol to be absorbed by my body and to start to feel the benefits. This morning, it took about 2 hours to feel like I could stand up without vomiting. I still haven't been able to eat anything for fear of throwing up (which is a "Go Straight to Hospital, Do Not Pass Go" card for Addisnians). Somehow, I feel completely nauseous and super hungry at the same time. 

When I finally got to work, someone commented that I must feel great since I "got to sleep in all morning". 

Ha

Ha

Ha

Thankfully, most mornings I am able to wake myself up enough to take my medication on time and avoid many of these symptoms. But this is what happens if I ever sleep through my alarm or for whatever reason, take my steroid dose late. My Medical ID bracelet says "Steroid Dependent" and that could not be more true. My body is totally and completely reliant on steroids and if I don't take them in the morning, I will literally be in the ER by evening. 

So the next time you wake up without an alarm, feeling full of energy and ready to start the day, remember why you woke up and be grateful for your healthy adrenal glands and all the work they do while you sleep. 

Love,

an Addison alien

who is going to go ahead and stress dose today (and if you don't know what that means, it's a post for another day)