Tuesday, December 31, 2013

2013, A Recap

Let me start out by stating that 2013 will go down as one of the most challenging years in terms of medical drama. It competes with 2005, and that was the year that I was officially labeled with Adrenal Insufficiency! Although I did receive some amazing blessings this past year, I never ever want to experience another year like it. Below is a month by month recap.

January

Let's start out the New Year in Urgent Care. Photo by iStock.
I spent New Years Day hovering around an Adrenal Crisis. I referenced it when I discussed The Beast, however I never elaborated further because it was such a blur. I did discover that you get faster service in Urgent Care when you collapse in the waiting room. I scared those nurses! Looking back, New Years day should have been a harbinger of how the rest of 2013 played out.

February

After my 5 mile race with my sweet awesome snow globe award.
In February, I placed third in a 5 mile race for my age group! A week later, I ran a 15k race with under 10 minute miles! However, all of the physical exertion started to take a toll on my overall health. Considering the Spoon Theory, I cannot believe I only took 5 mg extra HC for that 15k race! I was still suffering from what we refer to as "Steroid Guilt." Because society is conditioned that steroids are bad, many of us with Adrenal Insufficiency will risk hospitalization and possibly death so we can be on the lowest dose possible. Don't worry, 2013 has taught me the dangers of not taking enough life sustaining steroids.

March

Nothing like a selfie photo in a dirty mirror.
In March, I ran a half marathon! Again, I put up a sweet awesome time of 2:08:33. But I should have also increased my HC dose. Immediately after the race, I was hovering around that dangerously low coritsol zone. Addison's Disease is a rare disease, and there isn't formal research done on dosing for distance running. Patients are told to increase the dose, but are not told HOW to increase dosages to mimic the natural body. Much of it is trial and error. Through all the errors of 2013, it's looking like 2014 will be a much safer year for me!

April

I tried to look for a picture of an ambulance to put here, but I couldn't.
Turns out even looking at ambulances still makes me have flashbacks from the nightmare.
Instead, I'll show the picture of "Give drugs or watch die."
I almost died April. It's frankly a miracle I didn't given the lack of medical training of the endocrinologist, the primary care physician, the EMT's, and the ER. My Nightmare was so traumatic that it took several months for everything to sink in. Actually, I'm not sure it will ever sink in. I still occasionally have nightmares and flashbacks that fit the diagnosis for PTSD. Any time I hear an ambulance siren in the distance, my first thought is "They could kill me." Through counseling and writing, my PTSD symptoms have lessoned. However, April 19 2013 will be remembered as the scariest day in my entire life. It also marked a huge turning point for 2013.

May

Nothing like an IV in your hand to turn it green from the bruise! This was after the ER trip on May 5.
I did not know how long it would take me to "bounce back" from that Adrenal Crisis. It took me a lot longer than I expected which left me rather frustrated. I only took 5mg HC extra for my 15k race in February. For this 5 mile race three months later, I took 40 mg extra. I continued taking extra after the race to try to keep ahead of the impending crisis but it wasn't working. My mom left Seattle and moved in with me due to my inability to function on my own. I was confined to my apartment and under the care of my mom.

June

When you cannot run, walk. And be thankful for every blessing you find along the way.
My mom and I had to figure out WHY I almost died in April. An Adrenal Crisis never happens without something to trigger it, but we had absolutely no idea as to what triggered this. I also had to find a new endo, after Endo 3 completely mismanaged my case. We began to assemble a team of doctors to help piece together my puzzle. One of those doctors informed me that I could not run for quite some time. I went from a half marathon in March to not being able to move from my couch in June.

July

The Running Buddy and I in Chicago! Note: His shirt is from our 5 mile race in May.
After a solid two months of living with me, my mom moved out due to the night and day improvement she witnessed. I was able to take a trip to Chicago at the end of the month to visit my Running Buddy. However, I became sick due to my undiagnosed Gluten Intolerance which was highlighted during a meal of Chicago deep dish pizza. When I first arrived in Chicago, we almost had to make an ER run.

August

A picture with Kara from 2010.
Fun fact: That's actually my Running Buddy in the background crashing the photo.
August 1st marked two years after my dear friend Kara lost her battle with Leukemia. As I reflected on my own health struggles, I remembered Kara's strength. She was strong because she never, ever gave up her fight, even though at times she was afraid. It was that strength that I wanted to emulate when walking through my own health struggles. Then on August 20th, I was able to see one of the top Endocrinologists in the US. It had taken me over four months to schedule an appointment with her.

September

Weight loss and Addison's Disease are never a good combination.
July 2011. Aug 2011. March 2012. May 2012.
After five months of solid doctors appointments, my mom and I were able to piece together what triggered my Nightmare! We had some answers! One of the answers involved me going Gluten Free, which allowed me to link up with an amazing woman. Check out her facebook page. My goal is to be Clearly Alive, her goal is to Purely Thrive. They match up nicely.

October

Wedding set for March 1st, 2014.
I got engaged to my Running Buddy! And we would have never started our relationship if not for My Nightmare. As a whole, 2013 was a medical nightmare. October, on the other hand, was pretty awesome.

November

I'll never stop fighting to be Clearly Alive.
My blog received 10,000 visitors before hitting the one year anniversary in November. I realize that I am just a single voice online, but I hope that my single voice of fighting to be Clearly Alive despite my circumstances will continue to encourage others.

December 

Obligatory cat photo.
Thankfully, I am able to wrap up 2013 with some answers. I saw a total of fifteen different specialists but I lost count of the number of doctors appointments. I had two cat scans, an endoscopy, a couple of skin biopsies, several heart tests, and I forgotten what else in order to gather data and make conclusions. I had a few doctors that wanted to throw doubt on my diagnosis. I got into many arguments with Endo 4 and a rheumatologist who just did not like me. They incorrectly told me I was misdiagnosed and had Adrenal Insufficiency due to improper use of steroids. Recently, I had to get a note from Endo 6 for work. One of the top Endocrinologists begins her letter by stating that, "Amber is under my care for treatment of Primary Adrenal Insufficiency."

That's right y'all. I have closure through my answers. I have Addison's Disease, POTS, a B12 deficiency, and Gluten Intolerance. However, that list of labels is not the focus of my life. It is not the important part.

The important part is the fact that I will never ever give up my fight to be Clearly Alive.

8 comments:

  1. Hi Amber,
    I am 23 and was diagnosed at 19 with Addison's. My sister sent me a link to your blog, and it has been amazing to hear someone who understands what it's like to be this age and not be "normal." I have had similar issues with moving doctors fairly frequently.
    I actually had a question about one of your posts. You showed a picture of you when you were taking too much HC and then when you had your dosage fixed. I honestly don't even recognize myself in pictures currently because my face is so swollen. I was wondering what you have changed with your dosage? I currently am prescribed to take 20 mg HC in am and 10 mg in pm, but I usually only take the morning dosage. I also am prescribed to take FC "as needed," but I think we are similar regarding the "steroid guilt" you talked about. So glad to have someone to discuss this with!

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    1. Welcome Samantha!

      I'm so glad you found my blog! And it does sound like you have the very dreaded "moon face" that is associated with improper steroid distribution. Here's a super frustrating part about Adrenal Insufficiency: You can both be over supplementing and under supplementing at the exact same time.

      HC pills last in the body 4-6 hours. By taking only 20 mg HC in the AM, you are giving yourself a mega dose to start the day with (thus the signs of over supplementation). Then the rest of the day, you're starving your body (signs of under supplementation). I've recently learned about the Circadian Rhythm and how it relates to cortisol distribution (See this for more information: http://www.cahisus.co.uk/pdf/24%20HOUR%20PROFILE%20ASSESSING%20CORTISOL%20REPLACEMENT%20ADDISON'S.pdf)

      Our goal is to mimic it as closely as possible with our pills so that our life can approach normalcy. This is done by taking a large dose in the morning and slowly tapering our dose as the day continues. The goal should be to have 2/3rds of your medicine in your body by lunch.

      I now take my medicine four times a day, roughly four hours apart. Also, when I "stress dose" due to illness, I now double both the amount of steroids and the frequency I take them.

      For 30 mg HC, you can break your dose up into 15 mg upon waking, 7.5 mg at lunch, 5 mg around 4pm, and then (if needed) 2.5 mg around 8pm. It is critical that we take our medicine around the same time every single day. If I am even 30 minutes late with my dose, I feel it.

      And with the FC, if you have Primary Adrenal Insufficiency (Addison's Disease), you really need it. Because our entire adrenal cortex is kaput, we produce neither aldesterone nor cortisol. The aldesterone plays a key role in regulating our BP and electrolytes. I wasn't prescribed it the first four years I was diagnosed, but I'm on it now!

      And I hear you on that "steroid guilt!" I'm struggling with an infection at the moment. For infections that require doctor's intervention, we should double our dose no questions asked. Yet, I didn't want to even though I'm pretty CLEARLY sick. Luckily, I have a good group of support that reinforced the stupidity of my thought process. Until I beat this infection, I'm taking my medicine every two hours. By being super pro-active about it, I am hoping to avoid emergency medical treatment.

      Please keep in touch! It is SOOOO nice to be able to chat with others who actually understand :)

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    2. I have so many things I would love to hear your thoughts about! It sounds like we may be around the same age, and in challenging professions. Unfortunately, I was born as an overachiever in addition to having Addison's. I tend to take on a lot more than my body can handle (usually on days that I feel healthy and forget I have a serious illness...). Four years after my diagnosis and I may still be in denial... Is that bad? :)
      I have changed doctors 3 times, and since I just graduated and started work this year, I will be switching again. I have struggled to find an endo that I feel listens to me. If my symptoms don't fit into the mold they expect, they would basically tell me I wasn't having them.
      What is your opinion on caffeine? I think I sometimes use it when what I really need is more HC. I have heard it's not good to use caffeine with Addison's. I also sometimes feel like my blood sugar drops out. Is that something that will be fixed by spacing out my meds? I am using your advice and trying to take them throughout the day today. :) We will see if it helps!

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    3. Ha! We even have the same mentality! I am quite the overachiever and the fighter. I think that has helped me greatly with my journey with Addison's Disease. I just refuse to quit. It's not an option.

      Hey, find me on facebook :) On the left side of my blog, there is a link to my FB art page (aptly labeled "facebook"). Send me a message there so that we can chat more.

      As for my opinion on caffeine? I mostly stay away from it. I'm not really a fan. If I'm low on energy but don't want to take more HC, I reach for something super super salty. I know of other Addisonians who drink pickle juice, but I like Olive Juice personally.

      And better cortisol coverage should help stabilize blood sugars. I hope you notice an improvement with the spacing of your medicine! I should devote an entire post to the research behind that. Most doctors are unfamiliar with it. Which I don't fault them for that. They have hundreds of patients. I only have one me, so of course I am going to be actively researching and constantly learning about my disease and it's implications.

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  2. Thanks for the shout out! I'm so glad we met at the expo and even more grateful that we're able to share our stories. Your mission encourages me to keep going. Here's to a happy and healthy New Year!

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  3. Are you able to share with me the name and location of the endocrinologist you saw on August 20? I would like another opinion for myself. Thanks.

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    1. Please send a facebook message to clearly alive art :)

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