Friday, June 27, 2014

The Liebster Award

Many thanks to Grace from By God's Grace for nominating my blog for the Liebster Award! I was honored that she gave my blog a shout out, and frankly, she asked some really fun questions. The Liebster Award is basically an opportunity to network with other bloggers and learn interesting things about them. The (modified) rules are listed below.
  1. Acknowledge the blogger that nominated you.
  2. Answer the eleven questions from that blogger.
  3. Nominate other bloggers.
  4. Write eleven questions for those bloggers to answer.
  5. Inform them that they now have a new blog post to write!

As Grace queried me...

(And yes Grace, I did enjoy your use of the word query)

1. Describe yourself using only song, book, or movie titles.

2. If you could meet anyone, past present, or future, dead or alive, who would you meet? (Besides Jesus)

Left is pre-steroids. Right is post-steroids.
Note the sunken in cheek bones. We waste away without cortisol.
JFK. He is probably the most famous Addisonian. He also kept his health problems a secret to not appear weak. I would love to ask him if his high stress and high profile life style was worth all of the physical pain and stress on his body. He was on a large amount of medicine to survive from day to day. If he had spoken openly about his health struggles, perhaps our medicine and treatment would be more advanced.

3. What is your proudest moment?

My first half marathon in 2008.
During my senior year of high school, I tore a muscle in my leg. Yay for x-rays, MRI's, and the doctor going, "Dang. You tore that good." I completed several months of physical therapy and missed my senior year cross country season. Being the crazy gal that I am, my first race after being cleared from physical therapy was a half marathon!

It gives me great joy to know that not only did I over come a torn muscle and cross that finish line with my Primary Adrenal Insufficiency, but my family crossed that same finish line! Although I'm proud of my accomplishment, I'm even prouder that my mom, dad, younger brother and I have matching finishers medals.

4. If you could have any job in the universe, what would it be?

Crazy Artist. PS- My mom was AWESOME in letting me actually do this.
I have wanted to be an artist for as long as I can remember. However, I don't want to be just any type of artist. I want to be a crazy artist. I would love to be commissioned to paint wall murals and show clearly.alive.art around my community. I do plan on eventually selling prints on Etsy, but that will have to wait until I'm settled in the States again. Until then, I have a few of my pieces showing at Cafe Brazil in Addison, TX and will keep doing occasional paintings for friends.

Want an original clearly.alive.art piece? Just ask :)

5. What is your favorite Holiday?

Thanksgiving in Korea. 2009. There was no Turkey, only Chicken.
Thanksgiving, but not because of the food. I never know what we are going to do which makes this holiday super fun. Some highlights from past Thanksgivings include hot dogs and snow skiing in Canada, 6 kg of "big" chickens in Korea, completing an 8 mile Turkey Trot, crashing another family's Thanksgiving dinner but brining pie, and tricking picky relatives into eating a gluten free meal.

6. If you could change one thing about your city, what would you change?

No, I don't love to shop at bbKLCC.
Kuala Lumpur has way too many malls. Seriously people, there is more to life than shopping. There are over 3,000 stores spread across nine malls all within a ten minute walk from our hotel. Can we swap some of the claustrophobic and panic inducing shopping malls for open air and breathing space? I am positive this city would be much happier.

7. Do you have a favorite family tradition? What is it? And why is it your favorite?

Family photo from 2010.
My favorite family tradition is the fact that we have no traditions. We have moved around so frequently that it is rare for a "tradition" to happen more than once. We have no routine for Christmas, we never know what Thanksgiving will look like (see question 5) and it is perfectly acceptable for us to celebrate each other's birthdays months after the actual date.

We place very little emphasis on traditions and routines. Our lives are too unpredictable for that. Instead, we laugh at our "non-traditions" and celebrate the fact that we are a close family with some absolutely ridiculous stories.

8. What is your idea of romance?

I have no idea. I consider myself a very practical and logical person with my husband being the more romantic one. I'm not even sure I know what the word romance means. I think it means saying and doing extremely illogical things to try to make the other person smile. I'll let y'all know if I ever figure this one out.

9. What is your dream vacation?

Panhandle of Florida. Photo from 2012.
The beach. I want no worries, no obligations, no stress, and no disease. This is a hard thing to confess as my entire mantra and is how I fight to be Clearly Alive. But at times, I get tired of fighting. I get tired of worrying about medicine, food, water, sleep, environment, and even the weather. All of these things will influence how well I feel. People tell me to just relax and not worry while I'm on vacation, but it takes so much pro-active planning to be able to enjoy any change in the routine.

10. What is your guilty pleasure?

Andes Chocolate Mints. They are one of the few things that are actually labeled as Gluten Free in Malaysia and that I actually trust the labeling. I use them as my motivational treat at work. Before I smock up and step into the production line to solve engineering problems, I'll eat one or two (... or five).

11. Do you want to build a snowman?

Does it have to be a snowman?

And here are my nominations:

I love both of these blogs. Like me, both of these lovely ladies also live with Addison's Disease. It gives me great joy to know that I am not alone in my journey with my Primary Adrenal Insufficiency. We realize that we are more than our list of medical diagnoses. Our broken adrenal glands might make for some more interesting adventures every now and then, but they are in no way the central focus of our lives. Taylor's writings are constantly putting a smile on my face and Eva's journey towards a diagnosis gives me chills. May we constantly fight to be Clearly Alive, reminding ourselves of how very lucky we are because life truly is beautiful.

Taylor and Eva:
  1. How did you decide on the name for your blog?
  2. What is your funniest "brain fog" story?
  3. Cats or Dogs?
  4. Favorite piece of advice ever received?
  5. Dumbest piece of advice ever received?
  6. Can you share one of your favorite pictures from your traveling adventures?
  7. What keeps you going when times get insanely tough?
  8. Favorite ice cream flavor?
  9. Sunrise or Sunset?
  10. Quick! Describe yourself in only four words!
  11. And in conclusion, please share one picture of yourself that you believe captures your personality.
Have fun!

Friday, June 20, 2014

A Comment from an Aussie

Remember my nightmare? Remember the answers from the nightmare? Remember my problems with Qualitest? Read through the comments on that post if you have not done so yet. It's a little scary to see how many people have been harmed by Qualitest.

However, the issue of inactive ingredients is not confined to just American Qualitest. The words below are from an Australian.

As promised Amber here is my story about my experience with Cortate (cortisone acetate). I am an Australian so I hope any one else having problems after being on Cortate for so long may start to question why. I have been taking this med for seven years without much problem then around October last year I didn't seem to be coping like I should. I found it increasingly hard to function.

I just went down hill after Christmas. I would stress dose and still almost slip into crisis. It was like they only worked some of the time as if some of the tablets had no active ingredient and some were okay. Hit and miss. Everyone kept asking me "Have you taken your tablets?" and was acting if I hadn't .

I had constant brain fog, psychosis, depression, extreme fatigue, shakes, dizziness, constant diarrhea, irritable, no appetite, constant nausea. Constant pain, abdominal, lower back, legs. Shortness of breath. I couldn't recover from a chest infection despite adequate stress dosing. Three lots of antibiotics and my body still would not fight it. However I was still putting on weight for no reason (this however could be attributed to underactive thyroid). I had got to the stage that I could only manage to shower every couple of days for fear of passing out, and to shower meant the whole day in bed. I had to pay someone to wash my hair as I had not had the energy to wash it in a month. I was crying all the time and just a mess. 

One week ago I swapped from Cortate to Hysone (Hydrocortisone). I feel like ME for the first time in over six months. Pain has gone, brain fog has lifted. One day after starting the Hysone had a shower, washed my hair, went to the Doctor to get some scripts for my Mum, went to the chemist, got petrol. Came home and then did some cleaning. I did not crash, I did not have to updose as I was going into crisis.

I am sure the Cortate was poisoning me. I talked to my pharmacist and she said that she had had many patients swap to Hysone recently. I also had another pharmacist ask me when I refilled my script (I was trying to get another batch but couldn't) if I was having any trouble with this medication. I thought that was odd as I have been refilling a script for seven years for Cortate and that is the first time anyone has ever asked me that. My pharmacist said that she has had three complaints about medication from the company that makes the Cortate this week.

After one week, I have actually reduced my dosage by a third as I was way too Hyper. I have had none of the problems dropping down in dosage that I should have, which leads me to believe that something was blocking the absorption of the active ingredient in the Cortate or that it just wasn't there in all of the tablets. I have also dropped two dress sizes in the week. I feel like I have been in a coma for the last six months. One thing I have learnt about Addison's is question everything.

Michelle

Our life sustaining medicine should not also be our poison.

If your Adrenal Insufficiency feels uncontrolled and extremely unstable, check the manufacturer of your medicine. Has the formula changed recently? Ask your pharmacist. Like Michelle suggests, question everything.

Take an active role in managing your disease so that you can be Clearly Alive.

UPDATE 07/01/2014: I was provided with the list of inactive ingredients for Cortisone Acetate Tablets, USP [West-Ward Pharmaceutical Corp]. This medicine is distributed by West-Ward, but manufactured by KIMLA Pharmaceuticals.

  • Anhydrous Lactose
  • Colloidal Silicon Dioxide
  • Magnesium Stearate
  • Microcystalline Cellulose
  • Sodium Laurly Sulfate
  • Sodium Starch Glycolate
There is an inactive ingredient that is found both Qualitest Hydrocortisone and West-Ward Cortisone Acetate. I cannot stress enough that if your medicine seems to stop working, check with your pharmacist and see if anything has changed.

Friday, June 6, 2014

Penang


Let's run away somewhere and relax.
My husband and I turned Malaysian Labor Day on May 1st into a four day weekend trip to Penang. We ran away to a small resort on Jerejak Island with the sole purpose to relax. However, my cortisol levels were too high.

My medicine dosage has varied greatly since my crisis on April 19th, 2013. Before my crisis, I was on too low of a dose of Qualitest. After the crisis (and getting off of Qualitest), my medicine was increased to help heal my body. I was using the higher dosage and had shown no signs of too much until this trip.

Writing about too much cortisol is odd for me. Many of us within the Adrenal Insufficiency Community chronically under-dose ourselves due to the extremely negative connotation of steroids. We receive constant bombardment that all steroids are evil and we must be on the lowest dose possible. Unfortunately, this lowest dose possible barely keeps us breathing and hovering on the edge of an adrenal crisis. This was how I lived my life for many years and it resulted in countless ER visits with much pain and suffering.

I finally changed my philosophy to prove that I am Clearly Alive. My body will let me know when I have too little cortisol or too much cortisol. I must learn to recognize both and respond appropriately with the help of those around me. As I reflect back on our trip to Penang, I see many signs of too much cortisol.

One of the first signs was my unfounded anxiety coupled with anger. The entire trip to the airport, I was rushing without reason. We followed AirAsia's travel recommendation to take the bus that left exactly three hours before our departing flight. Yet I was firmly convinced that we were going to miss our flight. I had created an extremely unlikely situation in my mind that I could not move past and no amount of reasoning would calm me.

We ended up making it to the LCCT in ample time. There was no line for security and our flight was an hour delayed. There was no reason for my anxiety or angst. The logical side of the brain knew this, but the side controlled by cortisol would not release me.

I have my backpack, I have my passport, I have my ticket, I'm ready to go!
Once in Penang, we were picked up by resort staff and taken by boat to the smaller island away from everything with the goal to unwind and relax. Sadly, I felt fidgety and on edge the entire weekend. I was flat out exhausted, yet the elevated cortisol levels prevented me from truly resting.

I also had an inappropriate appetite. It never registered in my mind as hunger. Rather, I consumed ever piece of gluten free food that was set before me without even thinking about the amount. No matter how much I ate, I still felt like it wasn't enough.

I'm tired and I want food now.
Doctors need not fear those of us living with Adrenal Insufficiency overdosing ourselves long term. No one wants the side effects of too much of our hydrocortisone. I had weight gain, extreme irritability, inappropriate appetite, and an inability to sleep. My body was telling me that my dose was too high and I listened to it.

May I reflect and learn from the past so that my future will be better.
Over a month has passed since our trip to Penang and I am now on 10 mg of HC less a day. It also took me that full month to drop down those 10 mg. I can relax more. I can sleep better. I am eating a more reasonable amount instead of acting like a human vacuum with food. Am I on the right dose for my body? I don't know yet. What I do know is I shall continue to listen to my body and adjust accordingly.

PS- Despite being on too much HC, my husband and I still greatly enjoyed our trip.

I found a kitten! I miss my cat. He's back in the states being well loved.