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

There's a lot of aliens out there!

Wow, I am so surprised at how many hits this little blog has received in the less than 24 hours since I put it up. I guess there are more Addison Aliens than I thought! I'm so humbled that even one person would take the time to read my long and rambling posts. Thank you all so much!

The intention of this blog is to share my experiences in the hopes of helping others. Since I'm writing for you, I thought I should ask: what do you want to read about?

What treatments/options/medications/supplements/diets/etc do you want to read about? What else interests you?

Thanks again for reading!

Love,

Your Addison Alien friend

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

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.