Coco for Coconut Oil

I am seriously OBSESSED with coconut oil. It has so many uses, I can't even begin to go into all of them here. Google search "101 uses for coconut oil" and let your mind be blown.

Awhile back, I blogged that I was going to take a tablespoon of coconut oil a day, with a drop of oregano essential oil.

That lasted exactly one day.

The texture of cold coconut oil (if you have never used it, it turns solid at room temperature) was just too gross for me. No, thanks, I thought.

I did continue taking the oregano oil in a shot of water instead of the coconut oil and it worked wonders. Completely cleared up the congestion I had in my chest and I think brought up some gunk left over from finally quitting smoking last year. I highly recommend it as a natural antibiotic BUT ONLY USE THERAPEUTIC GRADE OILS! You cannot ingest any old oil. I use Young Living essential oils and love them. 

I still use coconut oil all the time. I make toothpaste out of it, I use it in place of conditioner and lotion, and I try to cook with it.

After reading this article, I will be cooking with a lot more of it! Incorporating just one tablespoon of coconut oil in your diet can help you lose weight and help with cardiovascular health. That's a big win-win for me, and a lot of folks with Addison's, who struggle with weight loss and heart issues.

Speaking of heart issues, I just bought a used FitBit Charge HR. It records my heart rate day and night! I'm thinking everyone with Addison's should have one of these! I just got it yesterday evening so I am looking forward to seeing today's results, but as of yesterday it looks like I am still tachycardic through much of the day. Looks like I get to see my doctor this week ;)

More on the Fitbit in my next post. In the meanwhile, go get yourself some cold-pressed, virgin (unrefined) coconut oil!

Love,

an Addison alien

who isn't getting paid by the coconut people, promise

I Reserve the Right to Eat Bacon

To ring in the new year, I became a baconarian aka a vegetarian who eats bacon (copyright ME).

Why?

Because bacon is delicious! I think bacon may be my all time favorite food and I'm not giving it up. Besides the bacon, I try to eat a plant-based diet.

I've read a ton of the diet books and for my money, the best ones are by Dr. Mark Hyman. I especially like his Ultra Simple Diet. Dr. Hyman specializes in functional medicine, or treating the body as a whole, instead of individual symptoms. It's not Paleo, or South Beach, or Atkins, or any of the other hundreds of diet plans out there. It's really just common sense.

If your great-great grandmother would not recognize it as food, don't eat it!

If you can't pronounce the ingredients, or the ingredient list is more than a few items long, don't eat it!

Or, at least, don't eat very much of it.

This basically means lots of fruits and vegetables. I shop at our local outdoor market and the prices are ridiculously cheap. I love it! I stock up on kilos of carrots and cucumbers for juicing, fruits for snacks, and vegetables for dinner or salads. My fridge is stuffed and it cost less than $20.

That leaves me extra money to spend on high quality protein. I buy local, organic, free-range eggs and locally made Greek yogurt straight from the cow without any sugar added. I live on a lake so I have access to fish and seafood but I rarely eat any besides salmon.

A typical day's meals for me are ;

- Breakfast: hot water with ginger and lemon essential oil (maybe a green juice or a smoothie too but I am not much of a morning eater.) This ginger lemon tea is supposed to combat swelling and support weight loss. You can read more here. It is also in line with Ayurveda, which recommends drinking a similar tea each morning.

- Lunch:  Either Greek yogurt with honey, chia seeds, and fresh fruit OR a salad OR scrambled eggs with veggies

- Dinner: Roasted veggies with fish OR salad and soup OR beans and rice OR quesadillas if I'm wanting a treat.

I try not to snack often and when I do, I try to chose fruit or nuts. But sometimes I need Doritos.

Of course, I don't stick to this diet every single day, but I do my best. When I eat out, I splurge and let myself get whatever I want. I only let myself buy quesadilla ingredients and bacon about once a month. I usually buy a couple pieces of candy and hide them in the freezer. But besides those little treats, I do my best to make my home meat-free, dairy-free, gluten-free, soy-free, and processed food-free (I am also caffeine and alcohol free. I know, soooo lame.)

Just real, whole foods that grow in the ground or on trees and you have to prepare to eat. The way nature intended. It's working well for me. I have no idea how much weight I have actually lost because I refuse to weigh myself, but my clothes are fitting better, my body looks better, and I feel better about myself.

Now if only I could delete the food delivery places from my phone. It's far too tempting after a long day to order a pizza instead of making a salad! I read once that you should shoot to eat well 90 percent of the time and let yourself splurge the other 10. That's what I'm aiming for. I think I'm closer to 70/30 now though! It seems like every social interaction involves food around here and I find myself eating out at least once a week.

Besides eating well, I supplement with lots of vitamins. Check back tomorrow for my full list of pills per day! I think I'm up to at least 15.

Love,

an Addison alien

Crisis Averted

For what may be the first time I can think of, I averted an Addisonian crisis!

This happened a couple days ago and between being wiped out from that and having family in town for the holidays, I haven't had time to post. But I wanted to be sure to record what happened, in case it can help me or you in the future.

If you read this blog regularly, you know I have been trying to slowly wean back the mega dose of Prednisone I was on. I started on 25mg in early November and was down to 7.5mg the week of Christmas. The day after Christmas, I only took 5mg. By the next morning, I was a shaking, sweaty wreck.

I woke up around 7am and fed the kittens, like I do every day, but I forgot to take my Prednisone. I know, so not ok. I was just so tired and I kept falling back asleep. I finally remembered I needed to take my meds at 10am so I had gone a good 20 hours without any steroid.

My body got PISSED off.

I started to feel the familiar signs. Severe nausea and feeling like I need to vomit. Shaking and heart racing. Followed by heart slowing.

I checked my blood pressure and heart rate twice during this episode. My heart rate went from 48 bpm to 110 bpm in the space of about 60 seconds. I have no idea what that means, I would think it was wrong but the bp reading came out the same, so I don't know.

I knew I needed to stay hydrated, get some food in me, and probably take more steroids than the 5mg I had managed to down around 10am. I called my oh so awesome dr, who totally calmed me down. I was in tears at that point, I was so sure I was going into crisis and I didn't want to spend the last few days of my family in town in the hospital.

My doctor advised me to take another 5mg since I hadn't thrown up yet, and then take another 5mg in an hour. My sister made me some scrambled eggs and I downed about a liter of Kangen water.

And for the first time since I don't know when, instead of falling down the scary cycle of nausea, throwing up, then hospital, I actually started to feel better! I stayed in bed and watched movies with my sister most of the day, but by yesterday I was actually feeling pretty good. I kept taking 15mg/day which was my dr's recommendation. I think I will stay on 15mg through the holidays and then start cutting back by 2.5mg a week again.

The goal is to stabilize around 7.5mg or 5mg of Prednisone so I can switch to the equivalent dose of Hydro Cortisone. It has been a long, slow process but I'm determined not to give up.

I can't stand the side effects of Prednisone or Dexamethasone and HC feels like my only hope!

PS: If you pray or believe in positive thoughts, please send some love to my friend Heather, Baby Gavin's mom, whom I have posted about before. She has a very important blood test tomorrow that could affect the course of her life. Please keep her in your thoughts. Baby Gavin passed away 11 months ago today. We were able to perform a Random Act of Kindness in his memory on his 11-month birthday, December 26th. I will post pics from that day soon. It was incredible.

10 Reasons Why Steroids Don't Suck

This time of year, the internet is chock full of Top 10 Lists: the best of the year in music, TV, movies, viral videos, and more. While it would be much easier to write a Top 10 List of reasons why having Addison's Disease and Hashimoto's Disease sucks, I am challenging myself to think of 10 Reasons Steroids Why Don't Suck.

I read a book this year called "The Magic". It's all about different ways to integrate gratitude into your daily life. It's a great book and I can't recommend it highly enough. It is meant to be read a chapter a day, giving you a new way each day to practice gratitude.

One of the days, the writer asks the reader to think of a relationship they struggle with and then write down 10 reasons to be grateful for said relationship. The idea behind this being that if you focus on a person's positives, you might forget all the ways they are driving you bat-shit crazy. I tried it and it worked pretty well for me. I still have people in my life that drive me nuts, but hey, that's what family is for.

I crankily got out of bed today and considered writing a long post about how much steroids suck and how tired I am and how my upper chest and neck have broken out in hives for the millionth time this year. I'm down to 5mg of Prednisone in the morning and 2.5 in the afternoon today. It's my first day on such a low dose and I would have given good money to stay in bed all day. I am just exhausted. I know my body just needs time to adjust from the super dose of 25mg I was on. But it still sucks. I have a to-do list a mile long, family starts arriving tomorrow for Christmas, and I just want to crawl in bed and hide. Oh, and did I mention I am also bottle-feeding two orphaned kittens?

OK, this is starting to sound like that long, complaining post I promised not to write. 

As a practice of gratitude, and with the hopes of changing my stinky attitude towards these medications, here are 10 Reasons Why Steroids Don't Suck:

10. FAKE DRAMATIC STORIES: "oh, those are claw marks from when I was attacked by a bear. I don't mean to brag, but I won that fight" sounds so much cooler than "those are giant, angry, red, stretch marks caused by steroids". Also works for the excessive bruises you accumulate from things like people hugging you too hard or a feather falling from the sky and grazing your arm.

9. NO WRINKLES because when you get "moon face" and grow a double chin from the swelling steroids cause, it's pretty much impossible to have wrinkles on your face too. I'm almost 33 and I am totally wrinkle free.

8. BUILT-IN TRAVEL PILLOW in the form of the "buffalo hump", aka the extra fat deposit between your back shoulders.

7. BIG(GER) BOOBS. Enough said. Sorry, men on steroids. You're welcome, men in general.

6. Along the same lines, EXTRA PADDING when you sit on on uncomfortable chairs or couches. Steroids provide an extra layer of cushion between your bones and the seat.

5. IGNORING ANNOYING PEOPLE is a lot easier when you gain 50 lbs and they aren't sure if it's you or not. Just make eye contact, show no sign of recognition, and keep walking. 9 times out of 10, they'll assume it wasn't you.

4. GREAT WARDROBE from your weight changing so often. When a friend of any size needs to borrow something, you have them covered (pun intended...and pretty lame).

3. POP CULTURE CONNOISSEUR because lots and lots of time to read and watch everything as you are hospitalized, put on bed rest, call in sick to work, or feel too fatigued to get out of bed, at least once a month.

2. You quickly learn who your REAL FRIENDS are. The ones who understand when you have to cancel at the last minute and don't make you feel even worse. The ones who aren't shocked when you are "sick again" (note: chronic illness means I am always sick. Duh.), the ones who call even though you were too tired to text them back, the ones who will drive you to the ER in the middle of the night to save you yet another ambulance bill. Sure, it sucks when people you thought were forever friends turn out to only like you on your "good days". But you are better off without them in your life. And the people who step up, or step into your life, more than make up for ones you lose.

1. Of course, the number 1 reason steroids don't suck and the reason we all take them every day: STEROIDS KEEP ADDISONIANS ALIVE. That's a pretty awesome thing. Modern medicine allows me to live. And for that, I could not be more grateful.

Thanks, steroids. I wouldn't be here without you.

Still, it took all day to think of 10 nice things to say about you. 

Love,

an Addison alien

Vitamin "P"

Dr. Mark Hyman wrote an article about Vitamin "P" or the positive affect pets can have on a person's health.

Of course, when you have Addison's or other chronic illnesses, you have to balance the benefits of having a pet with all the work they require. Even when the work is done joyfully, it is still another thing to do. Some days, I just can't get out of bed. 

But something about helpless kittens and puppies actually energizes me. I love caring for others. For whatever weird reason, that makes me happy. So even though I am sleeping a bit less than normal, doing an extra load of laundry every day, and bottle-feeding these little guys every few hours, I feel great! I was awake before they were this morning! 

I even made them outfits, as you can see. And look! They think my puffy steroid cheeks are nice, soft pillows. Finally, a positive to puffy cheeks!

Tomorrow I start my last step of the weaning process of Prednisone. My schedule is pretty packed so I'm praying my energy levels stay steady. Thankfully, the kittens are already sleeping through the night. 

I think they look a little like aliens too, especially in this picture! Take me to your leader!

Love,

An Addison alien 

The Kittens Are Coming!

It is cold and rainy outside and actually feels a bit like fall. Or winter. Whichever season it's supposed to be. Generally, we have two seasons: rainy and dry. The blustery weather gave me a chance to pull on a pair of knee-high boots that haven't zipped since I started on steroids and the wonderful swelling began.

Guess what?!?!?

They ZIPPED UP!!! All the way! 

I tried to wear these boots just a few weeks ago and I couldn't get them to zip over tights. Today, they zipped over thermal leggings. It appears the steroid swelling is starting to go down! I am thrilled but not terribly surprised, since I have cut my Prednisone back from 25mg/day to 10mg/day. Just one more reduction to go and then I think I will switch to HC, since that is what so many others feel best on. 

Oh, what's that? You don't care about my boots and just want to hear about the kittens? Ok, fine. 

A friend of mine fosters animals since there is such a pet over-population problem where I live in Mexico. The shelters are always full and there are always animals in need. He generally has about 20 animals in his home! He is incredible. And deserves a vacation. So he is heading to the beach for a few days and asked me to take care of two tiny kittens he recently rescued. I jumped at the chance (hello ticking ovaries)!

The kittens were burned in a fire that killed the rest of their litter mates and their mama. They are only about a week old, eyes just opened and bright blue. They were singed a bit but their mama managed to get them out of the fire. My friend came across them about that time and waited and watched for the mother cat to return for the two babies but when she did not, and he could not find her, he had to assume that she died in the fire. So he scooped them up and took them home, as he does with every animal he sees in need. 

We are enjoying bottle-feeding them and marveling at how tiny they are. Their heads are no bigger than a ping pong ball. If they ever stop squirming, I'll try to get more pictures. 

They both need names. Let me know if you have any ideas. 

In the meanwhile, we are calling them the white one, and the black one, which honestly sounds a bit racist and I'd like to stop calling them that as soon as possible. 

Love, 

an Addison alien

Good Morning

Since I promised to record all the treatments I am trying, I had to add this. I am taking a tablespoon of coconut oil every day, with a drop of oregano essential oil.

Supposedly, eating coconut oil will actually help you lose weight, help your hair grow, and give you healthier looking skin. I'll let you know if any of that happens.

I think it will for sure affect my hair. I foster puppies and I always add coconut oil to their food to get the coats nice and shiny. Not sure why I never thought of doing it for myself.

The oregano is for a cough I've had off and on for the last couple of weeks. I also have not been putting Thieves blend essential oils on my feet every night like I usually do. Shame on me!

If you think you want to try this at home, there are two things you must know. I only use Young Living essential oils because they are 100% pure so you can ingest them. Other essential oils are cut with chemicals you do not want to be swallowing. And unrefined, virgin coconut oil is the best.

I used to catch every cold I came near but since I started using essential oils, I haven't been truly sick once. I might get a headache or a bit of a cough or sore throat, but it never turns into a full blown head cold. And it almost always happens when I forget to use my oils for a few days.  I'm usually better as soon as I start using my oils again. It's pretty awesome.

Granted, my quitting smoking coincided with my starting essential oils, so I guess it's probably the combo of both that should get the credit.

If you want to quit smoking, I highly recommend the book "The Easy Way to Quit Smoking" by Allen Carr. Also hypnotherapy. And prayer.

Lots and lots of prayer.

Love,

an Addison alien

Let's Talk About Drugs

Sorry, not the fun kind.

Here's what I am on, what I used to be on, and what I am trying to transition toward.

You should probably know that in addition to Addison's Disease, I also have Hashimoto's Disease (which affects the thyroid), and have had episodes of Long QT (which can either be a genetic disorder or a reaction to medication, we have never been able to determine which one), and episodes of tachycardia and skyrocketing blood pressure, so I take meds for these issues as well.

Addison's Meds:

 - I was on 5 mg of Dexamethasone. That is down from 10 mg that I was one at one point. In hindsight, a ridiculously high dose. I wonder what drugs the doctor that signed the prescription was on.

- About two months ago, I switched to 25 mg of Prednisone (15 in the am, 5 around 10am and 5 around 1pm). This is a high dose as well but considering my body was used to so much from the Dexamethasone, and because I was in a community theater performance (making for long days), I wanted to start high and be sure to avoid a crisis. I am glad we did too. The first day I felt like I was going to faint all day. The director pulled me aside to ask what was wrong. Randomly enough, her husband has Addison's so I told her I switched my steroid and she totally understood. Each day after, I felt a bit better.

- I am currently weaning my Prednisone dose down to 7.5 (5 in the am and 2.5 in the afternoon). I am doing this by cutting my Predinisone down by half a pill (or 2.5 mg) every week. My doctor recommended "tricking" my body by taking that 1/2 pill less every other day. Right now, I am taking 7.5/10 in the morning and then 2.5 in the early afternoon. Next week, I'll take 5 one day in the morning and 7.5 the next, then 5, then 7.5, and so on. Does that make sense?

- My goal is to get down to 7.5 mg/day because I understand 5 mg of Prednisone is equivalent to 20 mg of HC. And my next step is to switch to HC. Why? Well, I've received a lot of feedback since starting this blog and a number of people have said how much better they feel on HC and how few side effects they experience.

Note: Everyone who has reached out to me has had their own story and has found their own medication or mix of medications that works best for them. I heard from one person who takes Dexamethasone and only gained 5 lbs! But overall, it seems the majority of people feel best on HC and experience the least side effects. 

Other Meds:

- Novotiral (1 pill in the morning for hypothyroidism)

- Metaprolol (a beta blocker I take 50 mg of in the morning for heart issues)

- Calcium - I take twice a day since steroids make you at higher risk for osteoporosis

- Vitamin D - I also take this twice a day since the last time I had my Vitamin D checked it was very low

- Vitamin E - I'm not even sure why I take this but I have two big bottles I bought at some point, so I take two Vitamin E pills a day

- Adepisque - a combo of three meds (Amitriptilina HCI, perfenazina and diazepam) that I take in the evening. It helps me sleep, helps me not have nightmares, and is an anti-depressant as well.

Supplements I plan to start taking:

- Magnesium
- Vitamin C
- Vitamin B complex (I had B12 sublingual tablets I was taking but I just ran out)
- DHEA

I will keep you posted as I change meds and add supplements and let you know of any positive or negative changes I feel.

I think the main thing I have learned through researching this all, is that Addison's Disease is NOT a one treatment fits all situation! I don't think I even heard from two people who took the same dose of the same med, at the same times. It's all about what feels best for your body - something only YOU can tell. Your doctor can't tell. Your partner or parent can't tell. If you aren't happy with how you feel, don't give up. There are only about 17 million miracle cures out there and I'm going to try them all.

Maybe I should have called myself the Addison guinea pig. Oh well. I love alliteration. Always have, always will.

Love,

an Addison Alien

"I Must Have Met Your Sister"

Yup, I've heard that. More than once. More than twice. I'd guess at least a dozen times over the last year.

Please understand my two sisters literally live in another country.

So, what they are really saying is, "I thought I met you but you weren't fat".

The funny thing is, before I started taking steroids and my thyroid went from hyper to hypo, people would pick on me for being too thin.

You really can't win. It seems a woman's body can always be improved upon. And it's every asshole's right to tell you how.

If anything, I found people were much more likely to tell me to my face what I needed to do to gain weight. When it comes to being overweight, people prefer to talk behind my back. I had someone tell me today that a few people have asked her why I "gained so much weight?"

You know, for the same reason everyone else does:

for FUN!

*Please note sarcasm*

Part of me wants to be catty and say things like - you've always been fat, what's your excuse?

Or, you had a kid 3 years ago and still look like you're in your second trimester.

Or, I can lose weight, you can't lose ugly.

Or, I'd rather have a little chub stuck to me than that loser you call your husband.

Mostly, I want to say things like that because that's what would happen on a TV show and I take all my cues on behavior from network sitcoms.

But really, I try not to give a f*uck.

Some of the best advice I have ever received is from the book The Four Agreements, by Don Miguel Ruiz. One of the agreements is to not take anything personally.

It sounds simple on the surface but it's not. You see, it doesn't say "don't take anything negative others say about you personally". It says not to take ANYTHING personally. Which means compliments too.

I'll let you google the rest because he clearly can explain the entire concept than me. But when you stop basing your self-worth on what others say - good or bad - but find your own internal standard, it becomes pretty easy to not care what other people say.

So when someone says they think they must have met my sister, I smile, and I say, "Nope, that was me. I just look a little different now".

And then I call them names silently in my head. I never said I was perfect. 

Love,

an Addison alien

Picture Proof

The steroid swelling doesn't stop me from smiling and dancing. (I'll explain my senior dance partner in a later post.) 

Love,

An Addison Alien

Welcome to Addison's Disease

Most of you know this blog was started after I wrote "My Story: Part 1". It was originally a very long Facebook post and it received a lot of good feedback. So much so, I thought I would start a blog and keep track of all the great information and advice I was receiving from various Facebook support groups.

A wonderful woman sent me this message after reading my post. She has graciously allowed me to share it here. It is for those newly diagnosed with Addison's Disease, but I have to say I learned a thing or two and I was diagnosed almost 2 years ago. She says she's not a writer. Clearly, she is lying.

Dear newbie:

I hope this helps to explain this autoimmune (you did nothing to get it), rare (I’ve read that only 1 in 100,000 people get it), chronic (goes on and on and on…) disease. Please remember that I'm not in any way medically trained. This is just thoughts put together by someone who has lived with primary Addison's disease for 47 years.

#1 Day to day living with Addison’s Disease can be complicated for many. Although not all of us with the disease experience the same daily challenges, the basis of living with Addison’s can be challenging. 

Once you find out what your correct dosage of steroids is, you can probably live about the same as you did before diagnosis. But there will be changes in your life. You will need to remember to take your medication on a daily schedule. You will find out what times work best for the type of steroid you use.

Here is what I have found out about living with Addison's. Remember, this is my version based on what I’ve lived and learned from others over the years.  I’m no medical person, just someone who has lived with Addison’s for 47 yrs.

For a person without Addison’s, the body starts to produce it’s cortisol/adrenaline around 5 or 5:30 a.m. By 6 a.m. or so, he/she is waking up. That is why many people wake up just before their alarm goes off during the week and will be awake earlier than they want on the weekends and not able to fall back asleep. It’s the body getting ready to face the challenges of being awake during the day. 

Night time comes. You start getting sleepy. It’s that the cortisol/adrenaline in your system is lower than it was first thing in the morning. You start out with a higher dose first thing in the morning, the body keeps you supplied with what you need during the day and slowly tapers off until bedtime. You fall asleep, but there’s still that pituitary gland monitoring your body just in case something happens during the night, and you need to be wide awake for what came up to be addressed before morning. 

Not so for those with Addison’s Disease. The body produces no cortisol/adrenaline. To get cortisol in our system, we need to take a steroid replacement. Steroids come in several forms: hydrocortisone, prednisone, cortisone acetate, prednisone, dexamethasone, and some others I might not know about. Each one is released at a different rate and has slightly different properties. Once we take the steroid, it takes from 30 min. to 45 min. to be absorbed into the system to give the energy the Addisonian needs to face the day. 

Until it is in our system, we don’t have the energy it takes to perform “normally”. What does this mean on a day to day basis? If we want to be awake and functioning by 6 a.m., we need to set the alarm to wake up at 5 a.m. Then we need to get up, take the steroid, and go back to bed for an hour. As the cortisone gets into the system, it slowly wakes us up. Then we try to get about a normal day – having breakfast, getting ready for a job, driving to work. In a perfect scenario, this would work. Who wants to wake up 1 hr. earlier than the rest of the world every day to take a pill this way?? 

My endocrinologist once told me it was like a person who is going on a long road trip and would be driving all day long and possibly into the night. If you get on the road with just a few fumes of gasoline in your gas tank, you will need to be trying to constantly fill up the tank while you are continuing to drive down the road; however, if you start with a full tank, you don’t have to fill up constantly or worry about the level of gasoline in the tank for a long time. 

Non-Addisonian: During the day, any time the body needs more energy to cope with stress, the adrenals in a non-Addisonian will provide the body with more cortisol/adrenaline to meet the level needed to get through the situation. At any time and no matter what the situation, the body will be ready to face whatever life throws at you. 

A long, difficult day with many challenges at work while you’re not feeling well and mentally stressed about a family situation waiting to be discussed or ongoing at home: no problem. The pituitary and adrenals take care of you with as much cortisol/adrenaline as you need. You can handle it. 

Need to stay up late (party; bring home work to get done for the next day; sick child waking you up during the night? etc.)? 

No problem. 

Need to be in extreme heat or cold? 

No problem. 

Didn’t get enough sleep the last few nights? 

No problem. 

Some extra physical activity you need/want to do? 

No problem. 

The list goes on and on with any change or challenge you face every day. “Fight or flight” and you’re ready for either. This is constantly going on in your body 24/7/365. 

Addisonian: You wake up and get ____mg. of steroid. After 45 min. to an hour, you can start to function. Depending on the steroid replacement we are on and the medication schedule, we don’t get another dose until that time. What if all of a sudden after being up for 3 hrs., we face something we refer to as “stress”? No extra steroids in our system until next dose time. I’ve seen 9 or 10 endocrinologists (specialists in Addison’s Disease) over the 40+ years I’ve had this disease, and they all tell me that the only time I should increase steroids is if I’m running fever over 100 degrees, having surgery, have the flu (vomiting and diarrhea), or something major like that. 

We face the same challenges as any other person, and I’m sure there are times I needed more energy to get through. A cold; extra demands at the job; sick parent/child; etc. Unfortunately, I’m limited to ___mg. of hydrocortisone. When it’s gone; it’s gone. 

There is really no conclusive study I’ve heard about that tells exactly how much steroid I should take. Everybody is different and has different needs. I have other medical problems, but there is no research on how much steroid I need to handle them. We try to live through a whole day as a non-Addisonian taking the dose of steroid prescribed by our endocrinologist without being tired earlier than “normal people’s” bedtime. It doesn’t always happen that way. 

Diabetics have a tough time, I know. My father has diabetes. For those with disease, there is a glucose monitor. They can check their blood sugar whenever necessary and as many times a day as they think there might be a problem. 

Unfortunately, there is no way for an Addisonian to know how much steroid is in their system. All I know is when I feel so bad that I need to lie down before I fall down, muscles start aching bad, I feel nauseated, and other symptoms, I then know that I’m low on steroids. I take what endocrinologists call a stress dose. It’s an extra amount of steroid to prevent me from going into an Addisonian crisis. 

The crisis situation is when you are really weak and probably on the verge of losing consciousness. This situation calls for someone to get you to an emergency room immediately. At this point, you need an IV with 100 mg. hydrocortisone to pull you through. It is life threatening. I’m not exaggerating here. The bad part is that there is no way to determine exactly how much extra steroid to take when you notice that things are starting to go bad. If there were only a type of tester as there is for those with diabetes, many of us would not have the problems we do. 

Sleep time? Not quite the same as non-Addisonian. If there’s still too much steroids floating around the system, you can’t fall asleep. That’s the steroid job!! Keep you awake. Many complain of trouble falling asleep or getting a good night’s sleep on a regular basis. This has been a big problem for me for 45+ years. 

The other part of the adrenal gland helps to control blood pressure. It balances the sodium and potassium. Most people are aware of this with all the publicity about high blood pressure. Addisonians have the opposite problem. We need the mineralocorticoid to help retain enough sodium to actually have a blood pressure. Our problem is the opposite of the rest of the world. 

Many of us, those with primary Addisons, need to take a medication called florinef to help retain salt in our body. We are also told to put as much salt on food as we can stand. This is because for the florinef to help the body hold the sodium, we need to have the sodium in our systems.  

I live in a very hot, humid climate. During the summer, I need to take salt tablets in addition to the florinef and added salt on my food. I cannot tolerate heat, even with the medications. My personal limit is 85 degrees. After that you can tell which one I am in a group outside. I start to sweat profusely, breathe heavily, and pant like a dog who has been left outside in the heat without any water. I start to get weak and wind up sitting down or finding some air conditioning. 

Again, I’m not able to participate due to my body not responding to the need. 

Again, no way to determine how much of the florinef and/or salt I need. 

This doesn’t take long to happen. I’ve gone out to get the mail in the middle of a hot summer afternoon and come inside with my blouse all wet due to sweating, very thirsty, and very tired. I could go on and on with examples of what the heat does, and how little time it takes to be in this heat before I start to feel ill. Over the years I’ve learned what to do to avoid these problems and crisis. Unfortunately, it means that I can’t participate in many activities or family outdoor get-togethers. 

This is just a brief summary of what I find I live daily. 
There is also the issue of side effects of long term steroid use that I wasn’t told about when I was diagnosed. Steroids can cause osteoporosis, so DEXA bone scans should be done and we should take extra calcium daily. I didn’t find out about this until I’d had this disease for 20+ years. At that point I already had osteopenia. Luckily with Fosamax and calcium, I’ve managed to get back to the normal range. Steroids do cause weak muscles; thinning of the skin – I can wake up and find small openings in my fingers or on my nose from pin head size to the size of a small paper cut; “moon face” as it’s referred to – puffy cheeks due to retaining fluids from taking too much cortisone – but what do I do if I need it to keep me alive? As can be expected, there is more to this which you can research, but I’ll end this here. 

Summing it up, many endocrinologists seem to have the opinion that as long as the cortisol and florinef are taken daily and the electrolytes are in the normal range on blood work, the Addison’s Disease is under control until the patient gets to a crisis or the verge of a crisis. This is not what I live, and from others with this chronic, rare disease have said, many of their lives are not like they were pre-diagnosis. 

-- Vicky Pantusa

Why Blog?

Mostly because I love to write. I think I always have and I know I always will. I'd rather write historical fiction or the next YL smash hit but here's the thing. I have Addison's Disease and as much as I don't want to let it define me, it does dictate my lifestyle in many ways.

Don't get me wrong. Many of these ways are good. Like quitting smoking (sigh) and drinking (yes, really). It directs me towards reading about the latest health trends and trying new things like kombucha (probably spelled wrong and I don't care and also it's gross, don't drink it).

As I've stumbled along since getting diagnosed, I've made a lot of mistakes. I've done dumb things, like listen to doctors, and take the medications they prescribe me. I often felt alone. I Googled and Googled and found so little relevant information on Addison's out there. Facebook groups seemed to be the best informed, which is its own form of crazy. How is it possible that a random stranger's advice online is better than a medical doctor's? I don't know how but I suspect it has something to do with the kind of magic that keeps Miley Cyrus famous.

They say, write what you know (you know, the great "they", much like the "royal we"). Living with Addison's Disease day in and day out is what I know. So I'm going to go ahead and write about it. Because the most defining trait of a writer is one who actually writes. For some reason, this is distinguishable from thinking about what one would write. Not to worry, surely we will soon be able to to download our thoughts and have computers type them out for us.

In the meanwhile, I blog. Here are some of the things I plan to write about and/or try:

- finding the right medication for you
- what the heck causes Addison's Disease in the first place
- gaining weight on steroids
- trying to lose weight on steroids
- Ayurveda
- yoga to stimulate the adrenals
- essential oils to stimulate the adrenals
- how Hashimoto's and Addison's are connected
- other health problems caused by Addison's
- skinny vs fat: someone always has something to say
- Pink Himalayan Sea Salt
- DHEA 
- water grain kefir
- different diets and how I have failed tried each one

I figure if I am going to try all these things, I may as well keep record of it. And maybe someone else out there will read this and not make the same mistakes I made. That is my intention.

I should probably mention that I am not a doctor, do not have any medical training, and am not advising you to go against your own doctor's orders. Everything I do, I do under my own medical team and you should too.

Which I really shouldn't even have to mention but apparently one must act as if everyone who reads blogs online is an idiot. I don't think you're dumb (unless you plan to vote for Donald Trump). 

Love,

an Addison alien

My Story: Part 1

This is part 1 of a very long story which I plan to share here. I am starting from now and working my way backwards. 

After years of undiagnosed health problems, we finally figured out that I have Addison's Disease. The treatment is a type of corticosteroid - dexamethasone being one of three possibilities -all of which can potentially cause weight gain, especially around the face (aka moon face), back of the neck (aka buffalo hump), and belly. Other side effects include fits of rage, hence parents of children on this drug nicknaming it the "demon drug".

I was originally put on Prednisone and my prediagnosis weight of 85 lbs slowly and steadily climbed to 100 lbs over the next few months. Sadly, my Dr had a heart attack and I had to find a new one. After some time, I was recommended to a local Dr who came across as very smart and very charming. He convinced me to switch to Dexamethasone because of medical details none of you care about and because it was significantly cheaper. He insisted it would not cause side effects when taken at a replacement dosage.

I was so excited when I hit 100 lbs...I had no idea the number on the scale would keep going and going and going...

Was he ever wrong! It took a little while but I started to literally balloon up. I looked pregnant! I got in touch with the Dr who told me I just needed an enema. Oh and my steroid dose was too high so cut it back. Ok, that seems to work for awhile.

Cut to me in the hospital with what feels like an adrenal crisis - severe pain in abdomen, vomiting, heart rate jumps, bp goes crazy, basically feel like you are dying cause well, you kind of are. Your body can't survive long term without cortisol and an adrenal crisis is your body's way of saying "HELLO I need some cortisol stat!"

New Dr has no idea why I am in crisis if I have been taking my meds. Basically implies I am making this up and actually says I am more likely to figure out what is wrong than he is. Great.

Meanwhile, emergency clinic drs do not understand Addison's and do not have me on a drip and instead just give me a shot of cortisol. They accuse me of being a heroin addict and drug seeker. I am crying, confused, and in incredible pain. I finally convince them to do a cortisol blood test to prove I am in an adrenal crisis. They scoff and shake their heads but do it. The bottom of the healthy range is 15. My test showed .03.

I finally see the managing Dr at the clinic. He says I clearly need to up my daily dexamethasone dose and that is the only reason he can think of why I went into crisis. That and possible ulcers because steroids are hard on your stomach. I decide he will be my new, New Dr.

When I am well enough, I research and find out that the same Dr who put me on dexamethasone also put me on a med that prevents your body from absorbing cortisol. So, I guess he was right about one thing: I was the one to figure out what caused my adrenal crisis.

New, New Dr wants to see me in a week. In that week, I gain 10 lbs. I ask him, is this normal, maybe my thyroid is acting up again? No, no he says. Just keep taking the meds and see me in two weeks. I gain another 10 lbs, he insists again it is normal, and clears me to be seen on an as needed basis.

My face is changing, I hardly recognize myself. I feel like a whale. I try to diet and exercise and it doesn't make any difference. Frustrated, I do my best to just ignore it and tell myself to stop being so shallow. I mean, I'm alive! When a specialist tells you to go directly from your appt to a pharmacy to fill a prescription "to prevent sudden death", you know to be thankful for each day. But deep down, I know something is wrong.

Finally, I called to schedule an appt with new, new Dr. He is busy but another Dr in the building can see me. I actually think this is a great idea and ends up being the best choice ever.

Enter Dr Jim. I explain everything to him and he immediately sends me for a full thyroid panel. When I bring him the results, he says he can't believe I walked in to my appt or could walk at all. He was amazed I wasn't hospitalized nor felt the need to be. I was thrilled! Something was making sense. No thyroid function equals quick and dramatic weight gain.

We have to slowly introduce the thyroid med. Getting to a full dose takes 3 months. I feel less swollen. But it's not enough. I'm convinced it's the dexamethasone after hours of research and communicating with people who have taken it themselves. Certain side effects, like stria, seem to be dexamethasone specific.

Dr. Jim helped me switch back to Prednisone about two months ago. We started high to be safe and make sure to avoid an adrenal crisis. I am now slowly weaning that steroid dose down. I know from others it can take 6 months or more to see a total reduction of the dexamethasone side effects. And long-term prednisone use has its own side effects and most people gain weight on it too. But I think it's the better option and I feel more like myself since getting off of dexamethasone.

Addison Aliens

I once read that having a child with special needs is like planning a trip to Italy, only to board the plane to be told you are actually flying to Holland. There's nothing wrong with Holland. It's just not what you planned. What about the gelato?

Actually having a special need, specifically Addison's Disease, is like boarding that plane and being told you are moving to Mars. For reals and for good.

Your condition is rare. It likely took dozens of doctors and diagnoses to figure out what was really wrong. There is no cure - although everyone from your mother to her third cousin's cross fit coach to the kindly stranger on the street will confidently suggest otherwise.

Your body doesn't act or react like other Earthlings.

Watch your sodium intake - unless you are a Martian - in which case, you might as well invest in a salt lick.

See a dermatologist for rashes and what not - unless you are a Martian - in which case, you might as well start to think of them as jewelry.

Then there's the serious stuff. All of which boils down to one thing: Addison's can kill Martians.

Like me.

The Earthlings can't quite understand, even the ones who really try. Even the ones that go to fancy schools and get all kinds of letters after their last names.

I'd like to say Addison's Disease does not define me. Doesn't make me a Martian. I can pass for an Earthling very well, thank you very much. But even though to most of the world, it is invisible - this illness is a part of me. To deal with it is infinitely better than denying it.

So here I am: not in Italy, Holland, or Mars. But I have this little internet support group. And it's full of Martians, just like me. 

Welcome Addison Aliens.