Monday, July 18, 2016

Another Day, Another Dr Appointment

After my dreadfully long wait (note: total sarcasm there. I had to wait 2 weeks), I got to see my endocrinologist today. I really like her. She is young and smart and deals with her own health issues (she is in a wheelchair). Our appointment went about the way I expected.

Overall, she is very pleased. Since February, I've lost 20 lbs! My heart rate and blood pressure remain pretty close to perfect. My glucose, sodium, potassium, and magnesium levels all look good. So we will be keeping my Prednisone dose at 5mg, which I've been on for a few months now.

The issues I am having now relate to my thyroid. I also have Hashimotos, which I take a medicine called Novotiral for. Back in February, we lowered my dose to 3/4 pill a day, since my TSH was 0.01 (this is suppressed TSH caused by over-medication, known as sub-clinical hyperthyroidism). I have to wait at least 6 weeks before getting the blood test to see if that dosage is working. So I went in April and had a blood drawn. My TSH was still 0.01 so we lowered to dosage again to 1/2 a pill a day. But my last blood test, about 3 weeks ago, showed my TSH had jumped to almost 4.5 (out of range, hypothyroid). The only dose left to try is 3/4 pill one day and 1/2 a pill the next. Amazing how sensitive the body can be!

There are a lot of patients out there who say they feel best with a suppressed TSH. I even had people recommend that I just go back to 3/4 pills a day. But my endo says that suppressing your TSH long term leads to osteopoprisis, cardiac issues, plus you are basically turning off your pituitary gland and it has more to do than make thyroid hormones, so I can see how that doesn't seem like a great idea.

As I mentioned yesterday, I am also taking homeopathic supplements to support my thyroid and adrenal health. This is in addition to the normal, prescription meds.

Much less swollen face on the lower dose of steroids!
It all seems to be working together pretty well, but my energy levels are super low. I could easily stay in bed all day, every day. So hoping that with the slightly increased dose, I start to feel like moving again.

And hopefully lose this last 15 lbs!


an Addison Alien

who really wish people would stop asking if I "feel better yet?" It's not that kind of disease!

Sunday, July 17, 2016

My Incredible Shrinking Face

Dear interwebs,

I'm back!

It's been a long time.

And during that time, a whole bunch of people have been clicking on this little blog. So, I figured I should probably post something for y'all to read.

Things have been going really well, overall. But when you are living with chronic disease, you get used to lots of ups and downs. And round and rounds.

Here's what I've been taking the last few months:

- 5mg Prednisone
- 100 mg Metaprolol
- various doses of Novotiral

- homeopathic meds: thyroid support drops made from NDT, calcium carbonate drops, 2 kinds of sublingual pills, iodine supplement (all recently started)

- vitamins: C, E, D, B complex, DHEA, magnesium, calcium

I see my endocrinologist on Monday to try to figure out what dose of Novotiral (my thyroid med) she thinks is best. When I take 3/4 of a pill a day, my TSH is suppressed to 0.01 (subclicnical hyperthyriodism), which my endo does not like.

But when I reduced to 1/2 a pill a day, my TSH jumped to almost 4.5 (hypothyroidism), I wanted too stay in bed all day every day (and not just because I recently discovered the tv show Dance Moms and want to watch every episode already), my hair was falling out in crazy handfuls a day, and I started regaining some of the weight I worked so hard to lose.

Since I had to wait so long to see my endo (a whole two weeks! I am spoiled by the awesome healthcare here) I went to see the homeopathic doctor a ton of people had recommended. He put me on the thyroid supplement and all the other meds I listed above. While I am still super exhausted all the time, my hair loss seems to have stopped or at least significantly slowed. So, being an averagely vain person, that makes me happy.

For the last 7 months, I have attempted to stick to a vegetarian, plant-based, dairy-free, gluten-free diet. I eat vegan when I can but other times I get crazy and eat Doritos. Or ice cream. In fact, the other day I had to stress dose and I ended up with a serious craving for homemade mac and cheese with bacon. In one meal, I basically ate every single food group I try to avoid. And it was worth every single delicious, cheesy bite.

I drink way more water than anyone I know - about 6 liters a day. I got a Kangen machine and make alkaline water almost every day. While the Kangen people say not to take your meds with this water, I do. I feel like I can take less steroid when I drink it with this water (which your body absorbs at a cellular level) and the less steroids, the less side effects. It also is the only thing in 10+ years that has helped my digestion issues (yes, the steroid helps but this water really makes a difference!). When I take my steroid with regular water, I usually end up taking twice as much.

Remember, I am not a doctor and I'm not giving medical advice! Just stating what works for me.

Another cool thing about the alkaline water is that you can make tea without boiling the water. I add a bag or two of Young Living's Slique weight loss support tea to my 6 liter water jug each day. It tastes delicious!

All these things have resulted in some positive changes in the way that I look. I started trying to take pictures every day but failed miserably. I ended up with about 2 pictures a week for the last few months. So here there are, in all their glory.

Remember, I am sharing these embarrassing and unattractive photos to show how my face has changed. Please be kind!

And yes, I noticed that I rock the messy bun way too often. I also have an appointment for a hair cut this week :)


an Addison Alien

who would like to remind you that "beauty is not in the face, beauty is a light in the heart". So said Rumi. 

Tuesday, May 3, 2016


I've decided gratitude is the greatest bedfellow.

My love affair with gratitude started about a year ago, when a friend suggested I read a book called, "The Magic" (you should read it too). The book lays out different ways of actively being grateful in your day to day life. For awhile, I consistently practiced those methods and noticed huge returns on my investment.

Somewhere along the way, I stopped. I stopped writing down 10 things a day I was grateful for. I started getting out of bed before counting my blessings. I stopped saying "thank you" seven times in a row when I was unhappy.

But I never stopped feeling grateful.

I carried gratitude in my heart. I said silent prayers of thanks. I smiled all the time. I tried to treat others with kindness and compassion. I gave generously of my money and time.

And gratitude didn't go anywhere. It didn't say you aren't paying enough attention to me so I am leaving. It didn't beg for praises. It just patiently waited for my return.

I woke up this morning and before even opening my eyes, I started practicing active gratitude. I heard the birds chirping and felt the sun warm my face. I started saying "thank you" for everything I touched. My sheets, my blankets, my pillows. My pets, my bed, my floor. My pajamas, my hair, my eyes. I thought of all I had to look forward to today. I felt so incredibly lucky and blessed.

I've carried that feeling throughout the day. As I visited our local orphanage and met their newest child - a 7 year old girl who was abandoned on a city bus. She had never been to school. I got to help teach her how to write the letter "A" and even try the letter "B". Thanks to the gratitude I carried with me, I was able to focus on this child's (now bright) future. I was tempted to feel anger at her biological parents. I wanted to scream at her mother and slap her father silly. It's easy to judge and wonder why or how anyone could do such a thing to their child.

But I choose to be grateful that she is now part of a fantastic children's home, where she will have a family that will never leave her.

I'm grateful that she is just a couple years behind in school. I am grateful her tiny body will grow with good nutrition. I'm grateful she won't be faced with the choice of selling her body or eating.

I am grateful that in just a few short days, a child who lost their entire life and everything they have ever known, can laugh and smile again.

I choose to focus on the good, knowing that will bring about more good.

I hope you'll join me.


an Addison alien

who, to be perfectly honest, still wants to punch somebody. Because no one should hurt kids. Ever. 

Saturday, April 30, 2016

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 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.


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! 

Friday, April 29, 2016

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.


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.


an Addison alien