Officially Obsessed

I am in love!

Not with a man (I'm still waiting for my knight of pentacles), but with a FitBit!

Have you heard of this? They use them on The Biggest Loser all the time and nowadays, they are so small it's just like wearing a watch. Except that the FitBit does way more than tell you the time.

It records your heart rate, the number of calories you burn, and how many steps you take. It also tracks your sleep! I am thinking everyone with Addison's Disease should get one. Here's why.

I have complained to my doctor of fatigue more times than I can count. This is a very common complaint from all kinds of people, but especially those with chronic, invisible illnesses. I take a prescription sleep medication every night and rarely go out in the evenings. My whole goal is just to get a good night's sleep. But no matter how early I go to bed, I am still tired when I wake up in the morning. I feel like I spend most days counting down until I can lay down again. And for the life of me, I just.could.not. figure out why.

Enter FitBit sleep tracker. Hmmm, so I wake up or am restless between 25 and 50 times per night? Well, I guess that would help explain why I am so tired all the time! In the week I have been tracking my sleep, the longest stretch of time I have gone without waking up or going into restless sleep, is ONE hour and 30 minutes. No joke.


On top of that, the betablocker I am taking is clearly not controlling my tachycardia as well as it should. I know this because the FitBit thinks I am exercising 8+ hours per day, based on my elevated heart rate.

I am also able to input what I eat and make sure I am eating less calories than I am burning, so hopefully I can get this steroid weight off.

I am also down to 7.5/10 mg of Prednisone. I think my moon face is going down, but it could be wishful thinking.

Love,

an Addison alien

who isn't getting any kick backs from FitBit...but will be bringing its results to my doctor as soon as I can get an appointment 

WTF

"dexamethasone should be used only if no other glucocorticoid is available"

Seriously?!?!Why am I reading this in a medical study? Why did my Doctor put me on dexamethasone!!! I am so sick and tired of being sick and tired and carrying around this extra weight does not help. And all because I trusted a Doctor and didn't research the medication switch myself. 

Don't do what I did! 

Research! 

Learn everything you can!

And most importantly, be your own advocate!

Love, an Addison alien

who thinks you should read the study too. And promises not to yell in her next post. 

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

Still Here

I am so sorry loyal readers! I have been busy housesitting, dogsitting, and babysitting. Wednesday night I kept 6 kids and 6 dogs! And I didn't even have to stress dose :)

I still haven't found HC pills for sale anywhere yet, so I had to get more Prednisone. I would still very much like to switch to HC but now I'm not sure if it will be possible.

The swelling seems to be going down somewhat, I can't grab as much flesh from my "buffalo hump" as I usually can, but I still haven't actually faced a scale yet. Maybe tomorrow. If I'm feeling really brave.

The food cravings and intense hunger have subsided somewhat. Hoping that means I am heading in the right direction.

Love,

an Addison alien

who just wants her old face back

Preparing for Heartbreak

I try to be a pretty positive person, but tomorrow is going to suck.

After weeks of caring for two orphaned kittens, I will be returning them to my friend who will continue to foster them until he can find their forever home.Since I am house-sitting for the last couple weeks of January, I can't keep the kittens with me. So it is time to say good-bye.

Fostering animals is heartbreaking, but so necessary. I don't know how it works with children, but animals seem to quickly adjust to new surroundings, as long as they are given food and comfort. Even though I cry buckets every time I have to give one of my fur babies away, I know it is for the best.

With Addison's and Hashitmoto Diseases, there are lots of days where I just don't have the energy to get out of bed. I know there is no way I could keep up with caring for more than two dogs for too long. Fostering is my way to help, without long-tern commitments that I don't know if my body can keep.

The shelters where I live are always packed and can't accept animals that are still bottle-feeding. So that's where I come in. I bottle feed puppies and kittens and then do my best to place them in their forever homes. I've been contacted by local vets, shelters, and independent fosterers to help out with young animals.

It's always exciting when a new "baby" arrives. They are so tiny and cute and it's so fun to see their little personalities come out. I love watching them grow.

But then comes the day when they have to go to their "real" home and I cry buckets. The last night is always when I cry, that way I can usually hand them off without getting all teary-eyed. I know the animals don't have any idea what is going on, but I always explain it to them, just in case they somehow understand.

I have to remind myself that if an animal spends the first 6 weeks of their life with me, in just 6 more weeks, they will have been at their new home as long as they were with me. Then they still have their whole lives to live! So in the long run, it makes sense. But for the short term, it's heartbreaking.

Oh, well, It's about what is best for the animal, not what makes me cry the least.

Love,

an Addison alien

who will be crying enough tonight to warrant a stress dose

Find A Fellow Alien

How cool is this?!?!?!

I saw this on Facebook and had to share here. Someone made a world map online of Addison aliens! You can add your information and connect with others in your area. I think this is a GREAT idea and I hope you'll join in. Here's the link:

http://www.diseasemaps.org/en/addison-disease/#_=_

Enjoy!

Love,

an Addison alien

It Didn't Work

I thought if I went to bed early, I could drag my butt out of bed and go to yoga or tap or both.

Hahahahaha.

My body apparently thought that was a really funny idea.

So I am in zombie mode, despite more than 8 hours of sleep and probably double that just lying around reading.

I hate days like this, where I am just looking for the next time I can close my eyes. I feel so out of it. Maybe the switch to HC on Thursday will help?

Here's hoping.

Oh and in my reading I came across a blog of a young girl with brain cancer who was given LESS dexamethasone than I was on. What.the.hell?

Somebody Kick Me

I need someone to kick my butt into gear. For the last two days, just getting out of bed feels like a huge accomplishment. I am just exhausted, no matter how often or how long I sleep.

But I am tired of being tired, so starting tomorrow, I am getting moving. Back to daily yoga classes, my personal yoga practice, tap class, and whatever else sounds fun. I need to move if I want to get this weight off, although lying in bed wishing I was thinner is much more my speed.

It's also time to start really keeping track of what I eat and what I lose, so I am actually going to weigh myself (which is totally against my religion) and take some photos and (gulp) share them with you all.

I'm not setting any specific weight goals, I just want to be as healthy as possible and on the best combo of meds possible. I'd like to recognize my face in the mirror, that's all. Already, I've noticed the swelling in my face has gone down. I see the hint of a cheekbone and the double chin is much smaller than it used to be. So I do think getting off dexamethasone has had positive affects.

Of course, if I had known there was such a thing as "prednisone face", I probably would not have switched to pred! But I didn't and now I do, so to keep the side effects as low as possible, I am switching to HC (hydro cortisone) later this week. I run out of my prednisone pills on Wednesday and will make the switch then.

So keep your fingers crossed for me, because it's going to be a big week.

Love,

an Addison alien

ER Checklist

Help! 

You are in crisis or in that scary downward cycle on your way to one. Your brain is mush but you can't just walk into an ER unprepared. The ugly truth is that our symptoms too often resemble other, less serious conditions, and you could be left waiting to see a doctor for far too long.

Addison Alien Vicky, who wrote the intro to Addison's letter shared on my blog, reminded me of a really important point:

"Hi! I printed out the form that you posted for the ER letter (under Downloads on your right) and took it to my endo. today. I told him about the terrible treatment I had at an ER and he told me to be sure that whoever takes the form when I go in IMMEDIATELY takes it to an ER doctor. With the severity of what could happen, we should be seen right away."

Vicky also suggested highlighting or circling in red the most important information. Thank you, Vicky!

I also wear a medical ID bracelet that states that I have Addison's Disease and am steroid dependent, just in case I am in car accident or am unconscious for some reason. In my experience, just having a medical ID seems to make nurses and doctors take you more seriously! I highly recommend getting one.

Now go print and fill out the ER Letter while you're still feeling well. You'll be glad to have it when you're not.

And if you really want to be prepared, put a copy of the letter in your car and give one to your parent, partner, or boss. Or all three!

Love,

an Addison alien

15 Pills and Counting

In my quest for the best possible health, or to just be able to get out of bed everyday, I've been taking a few additional supplements and vitamins. I have a hard time taking multi-vitamins, they are hard on my stomach. So I take individual vitamins, as well as medications for my adrenals, thyroid, and heart.

I'm taking 10 mg of Prednisone split three times per day and hoping to switch to Hydro Cortisone soon. My doctor wants me to stabilize on 10 mg of Prednisone first. Since I slept about 18 hours yesterday, I doubt he would consider me stable just yet.

Over the holidays, I didn't take as many vitamins as I should, so I am hoping that this new regiment gets me feeling out of bed and feeling more energetic.

7am - 5 mg Prednisone, 50 mg Metoprolol, 100 mg Novotiral, 500 mg Vitamin C

10am - 2.5 mg Prednisone, 400 IU Vitamin E, 600 mg Calcium with Vitamin D, 50 mg DHEA

1pm - 2.5 mg Prednisone, 400 IU Vitamin E, 600 mg Calcium with Vitamin D, Super B Complex

Bedtime - 500 mg Magnesium, 1/2 pill Adepisique

I am weaning off of a combo sleep med, anti-depressant, and anti-anxiety. Taking the Magnesium seems to help. I am down from 2 pills to half a pill and will hopefully be off it completely in the next few weeks.

I'm still trying to figure out the best combo of meds and times so if you have any ideas, please let me know!

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

Hurry Up and Wait

I am really enjoying having a little corner of the internet where I can share with others who understand my life. Here's one I'm sure isn't new to you:

You are invited to do something fun.

You say yes, because it sounds fun!

The day of the event comes, and you feel ok, so you go along your day as planned.

You use up all your spoons and find yourself cancelling at the last minute so you can go home and fall into bed.

I hate when I have to back out on plans because people then don't want to invite you to do things in the future. They feel like you can't be relied on. Since you can't rely on your own body, you can't help but understand this. And you feel like you can't be relied on either.

It sucks.

And I feel stupid for complaining it sucks because today is the birthday of a high school classmate of mine. Or I should say, today should be her 33rd birthday. She died in a car accident the year after we graduated from high school. I bet she'd love to have one more night to get together with friends.

I think I feel guilty for not pushing myself to follow through on every invite and party because I know life is short. How do you balance that knowledge with a chronically ill body that just can't keep up? If it were up to me, I'd be wrapping up work, grabbing dinner with friends, and then going to see the show we all reserved tickets for. But I know if I do that, I risk a run in with the hospital.

I think I am also annoyed with myself for giving my power away. I know I only have so many "spoons" each day. I just don't know ahead of time how many spoons I will have on any given day. I guessed I would have enough spoons today to go to an audition, work, and go out.

I conveniently forgot how much I dislike the audition process. I was there yesterday for a few hours and read for less than 5 minutes. Today, I was there for almost 3 more hours, and again, only read for a few minutes. Spending spoons all the while.

When they asked yesterday if everyone could come back the second day for auditions, I should have said no. No, I can't waste another 3 hours waiting to read to you for 3 minutes. Once wasn't so bad, but two days in a row? That's a lot of spoons, people. And I just gave them away, right along with my power.

I guess it's the gift/challenge of Addison's Disease, depending on how you look at it. I am realizing that I need to be very selective with what I do. My default response, unfortunately, should be NO, not YES. My number one priority has to be my health. The last couple days, I haven't practiced yoga or eaten well, the things that always seems to go when I get "busy'".

I loved theater so much in high school. I have so many fond memories of the shows we did and my involvement there. It very much defined my high school experience. Maybe I assumed that feeling was still there, just buried away somewhere?

Nowadays, I'd rather go to yoga than rehearsal. I'd rather go to tap class than an audition. I think my love affair with acting is coming to an end.

But I'll still go see as many shows as I can, as long as I have the spoons.

Love,

an Addison Alien

(who hopes you have enough spoons for a fun Saturday night)

Dream a Little Big Dream With Me

"Let the size of your God determine the size of your goal." - Rick Warren

Another (super awesome and amazing) blogger sent me a link to a devotional this morning. I promise this is not a blog where I will try to convert you or claim one religion is better than another. We are all Addison's survivors and however and whomever helps you get through is a-o-k with me. 

But I couldn't help but share this quote. I've been thinking a lot lately (one activity that doesn't require too many spoons so one I do often!) and I've noticed a pattern in my life. Even before diagnosis, I often thought certain goals or dreams were just for another kind of person. What kind or whom I did not know, but certainly not me. 

I love storytelling and always have. Any form is fine - books, tv shows, movies - I love them all. But I never thought I could write books or tv shows or movies. That was for other people. Again, I have no idea what qualifications this "other" people had that I believed I didn't have, but I always felt like there was me and "them".

My thinking started to change when I started working in broadcast news as a production assistant. I saw people that looked and acted just like me, writing the news. Writing the words the anchors would read to our millions thousands of viewers! For the first time, I thought, "I can do that'. And I did. I quickly went from a PA to producing the weekend shows to producing the 5 pm show, the most watched show on our station.

But then, I started to think "I can't" again. I thought "I can't move up here". "I'm too young to become Executive Producer or News Director", I told myself. In retrospect, I could have gone for either job, and over time, I am confident I would have gotten them. 

Instead, I realized I had a bigger dream. I wanted to tell stories in more than 30 seconds. I wanted a job that didn't involve people screaming at each other on a regular basis (again, live TV). I didn't want a job where there could always be breaking news that would mean you had to cancel all your plans, regardless of what they were. I didn't want a job that expected someone to work every.single.holiday. 

So I moved to documentary film, where I quickly landed a job with one of the most respected directors in the field. I was lucky. While I mostly enjoyed this form of story-telling, the lack of a union and hence crazy work hours and demands started to wreak havoc on my health. 

And the thoughts of "I can't" came back. I can't possibly ever direct a documentary on my own. I can't get the funding, I can't find the free time to develop a proposal, I can't, I can't, I can't. It finally came down to "I can't get healthy and keep working in this field". 

That last one I was right about. 

Now that I am on my way to getting healthy (yes, I have been on my way for a few years now, but went un-diagnosed for almost 10 years so I'm at peace that this process will take awhile), I am finally able to dream big. I think it has a lot to do with balancing my brain, thyroid, and supplementing what my adrenals do not provide. 

When your body isn't working right, everything feels impossible. A load of laundry can feel like a huge accomplishment. I still have days where the laundry pile looks like Mount Everest. But the good days outnumber the bad and on those days, my goals and dreams are growing by leaps and lunges. 

I would re-write Rick Warren's line to say "Let the size of the universe determine the size of your goals". Dream without dimensions or limitations. 

The world has room for you too. 

Love,

An Addison Alien

My Goal for the New Year

(Well besides getting my medications sorted out, losing the steroid weight, and sharing my success stories with all of you)

You're Not Crazy

Those are three of the most powerful words anyone has ever spoken to me. Hearing them from a doctor, after years of being told it was all in my head, was so wonderful it brought me to tears.

My New Year's gift to you, fellow Addisonians, is proof positive that we.are.not.crazy.

If your family, friends, or medical professional needs a little convincing, here is the link to the article.

Happy reading and happy 2016.