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.

Sunday, December 15, 2013

B12

Let's visit one of the things that we discovered after the nightmare, my B12 deficiency.

Want to know something frustrating?

My B12 levels were actually flagged as critically low on blood work taken in 2010. However, the levels were never regularly followed afterwards. In between three states and countless doctors, that B12 deficiency fell through the cracks until a crisis hit. This is why it is critical that you always get a copy of every blood test. Doctors have hundreds of patients. You only have one you. You must take pro-active steps to manage your health. I should have noted that my B12 level was critically low three years ago and requested doctors to regularly check it as I supplemented. I didn't. I forgot about that blood test. Lesson learned.

When my B12 came back low this year, my doctor informed me that she would immediately start me on injections:
Once a day, for seven days.
Once a week, for four weeks. 
Once a month, for life.

Um... PROBLEM. I hate needles. I'm terrified at the thought of injecting myself! Also, these are not the tiny needles used for insulin. They are big! It's an inch long in order to due the inter-muscular injection. Oh yay.

That's not a tiny needle.
When the nurse came in to teach me how to inject, she started out by referencing her weight. "Now I try to grab the fattiest part of my thigh to inject so it hurts less..." Her voice quickly trailed off as she observed my small frame. "... oh... you don't have any fat on you." Thank you sweet nurse. You are not helping to ease my fears.

When the pharmacist handed me the prescription, he mentioned how he had a difficult time picking the best syringe due to my low weight. As I took the bag of needles, all he could say to my face full of fear and dread was, "I'm sorry."

Well, if I was going to have to do something scary, I needed a reward afterwards. Doctors reward shots with stickers and colorful band-aids. I deserve the same treatment! I was going to get some sweet awesome band-aids!

My Reward: Disney Princess Band-Aids.
The time came for my first injection. I prepared everything. I took that deep breath. I stuck that big needle directly into my thigh. And guess what? It wasn't that bad. I did it! I overcame my phobia! Now to do it six more days in a row.

As someone who has been chronically ill longer than not, I never realize how awful I feel or how sick I have become until I am shown what "healthy" feels like. My doctor informed me that supplementing my B12 would give me life. How right she was.

I got down to once a month injections in September. In October, I was good and gave myself the injection on time. In November, I did not inject. The longer the time gap in between injections, the scarier that needle becomes.

So intimidating.
Don't worry readers. I have given myself my December shot. Once again, I see how I started to slip back towards not feeling well but had not fully realized it. I feel so much better.

Now several people ask why I do not just take over the counter supplements. Why am I using that scary needle?
  1. This is what my doctor prescribed.
  2. This is the exact same needle and the exact same site that I would use if I ever need to self-inject my emergency solu-cortef.
Every time I inject my B12, I am using that experience as practice. B12 isn't necessarily life saving in a critical situation. In an Addisonian Crisis, the solu-cortef injection is life saving. I will gladly give myself a shot once a month knowing that this skill could save my life one day.

I am doing everything in my power to remain Clearly Alive.

Sunday, December 8, 2013

Icemageddon

The leaves were frozen in the same direction that the wind blew.
Confession: I am a warm weather gal.

Broken branches everywhere.
I have survived Texas summers, Georgia summers, Florida summers, Iowa summers, and Arizona summers. The only way I survived my first Seattle summer was through the frequent use of our fireplace. That's right. Our first summer in Seattle, our fireplace was constantly on.

I bet he wished he parked in the garage.
100 degrees with stupidly high humidity? Bring it on Florida! 115 degrees with no humidity? I laugh at you Arizona! I can take the heat! As for winter? 22 degrees with 10 degree windchill? TEXAS! What are you doing to me?

Trees aren't supposed to touch the road.
The weatherman tried to warn us that the ice storm would be bad. Our weatherman had also cried wolf only two weeks prior to have nothing happen. If you remember the original story of the boy who cried wolf, when the wolf finally made an appearance the villagers were completely unprepared.

These trees hadn't even fully turned yellow!
Cleon, you wolf, I was unprepared.

Poor rose bud. So much ice covers you.
I almost ran out of my fludrocortisone (FC). In my mind, I knew I had enough of my other steroids. I did not even think of double checking all of my medicine before Icemageddon hit. Friday morning, I looked outside and thought, "Uh oh." I then went over to my medicine cabinet and thought, "Really big uh oh!" I had one day of FC left.

FC works alongside my Cortef to regulate my sodium levels, potassium levels, and blood pressure. Without it, my sodium tanks, potassium sky rockets, and blood pressure drops so low that I will regularly pass out. In summary, this medicine is important, and I was out of it.

Various scenarios started running through my mind. Would I have to drive on three inches of solid ice? Would I have to walk three miles round trip on that same ice in ridiculously cold weather? Would I have to ration out my FC and hope for the best?

Thankfully, none of the above! I have a last resort, emergency use only, back up stash of all of my medicine. I carry it with me everywhere I go in the same pouch that holds my solu-cortef injection. I didn't think to check it before Icemageddon, but I was frantically checking it that morning! Six days. I had a six day back up of FC. That was enough to last me through being iced in.

The weight of the ice caused it to snap in half.
Do you have a medical condition that requires life saving medicine? Do you have an emergency back up for all of that medicine? If you don't, create one now! If you do not have enough medicine to create an emergency back up, ask your doctor to write out a script for a two week supply of all of your critical meds. Get it filled now. Carry it with you at all times. You never know when it could save your life.

My hidden stash of FC saved me during Icemageddon. As soon as I am able to, I will restock it to be prepared for next time. And it will have fourteen days worth. Not six.

In closing, I present the obligatory cat on ice photo.

Wednesday, November 27, 2013

Awareness T-Shirts

I've had an idea floating around for quite some time. I wanted awareness t-shirts. I wanted them to be a bold, in-your-face, cannot be ignored type of shirt. I wanted to wear them while I run (well, when I get back to running. Darn you April. I'm still too weak to train regularly).

My first draft might have been a little too in-your-face.

"Ask me about my steroids."

Yeah, let's have me running a race bragging that I take steroids. While I do want to generate discussion, I might not want to generate that type of discussion.

Round two turned out better.



It's amazing the discussion that these shirts have already started. Someone saw me working on them and thought that they were a joke. "Life-saving steroids? Yeah right."I then proceeded to explain Adrenal Insufficiency. He thought steroids were only used to treat severe lung issues, reduce inflammation, or combat horrible infections as a last result. I was able to explain to him that I take a MUCH lower dose of those steroids and without them, I would die. They are my life-saving drug, just like insulin is a life-saving drug to a Type-1 diabetic. Awareness raised.

I didn't used to be this passionate about re-educating people on Steroid Dependence. Then I almost died due to lack of education. Now, I speak up, speak loud, and speak passionately. Things such as my new medical alert bracelet do not give people the option to misinterpret the severity of my situation.

May we continue to raise awareness so that events like Sarah Thomas's death never happen again. Sarah Thomas died because the paramedics did not understand Adrenal Insufficiency. We can prevent more unnecessary deaths through awareness and education.

I would like to remain Clearly Alive.

Here's a selfie, with a broke cell phone camera showing the front and back of the shirts.
They're AWESOME!

03/31/14 UPDATE: Want to know something awesome? We sold over eighty shirts between round one and round two of these orders. That's a lot of people walking around challenging people to "Ask me about life-saving steroids." Wear your shirts and wear them proudly!

06/25/14 UPDATE: Round two working with the t-shirt printer failed. His shop dropped the ball. I apologize for all those who were excited about receiving their shirts, your money shall be refunded.

08/28/14 UPDATE: I FIGURED OUT A WAY TO CONSTANTLY SELL THESE! Happy dance! Check out the shirts and other awareness items here. Proceeds will be donated to either NADF or AIU.
New shirts! New shirts! :)

Sunday, November 10, 2013

Blogging for A Year!

"My name is Amber, and I live with an incurable disease."

I wrote that exactly one year ago.

One year ago, I decided I was done being silent about my disease. I wanted to share my story. I wanted to speak up so that others might learn. I want to tell people that it is ok that they can not fix my disease and that some days I just have no spoons left.

When I started this blog, I did not foresee my crisis in April. I did not realize that we would stumble upon how Qualitest generic hydrocortisone was making me and multiple others so sick. I have seen fourteen different specialists since April 19th. This past year has been difficult for me with my Addison's.

I'm still Clearly Alive.

I still actively choose to remain optimistic and work with this beast, be it by running a half marathon or walking a 5k. I live my life day by day, thankful for my journey.

Oh, and I've learned that not everyone might understand what "STEROID DEPENDENT" means. I got a new medical alert bracelet to hopefully clear up the confusion. If you don't understand that last line... well... then... you need help.

I blacked out my last name and year of birth for this picture.
The "13.1" is to remind me that I have been able to accomplish some pretty amazing things,
Addison's and all.
Here's to my next year of blogging being even more full of adventure! But let's make it the good kind of adventure. I'd like to avoid medical adventures for a bit.

Wednesday, November 6, 2013

Generic Hydrocortisone

Does your HC look like this?
If yes, switch to a different brand. ASAP.

In The Nightmare Revisited, I made the bold claim that I am allergic to the generic hydrocortisone. It was one of the five things that triggered my April Crisis. This has generated much discussion through various forums. Thus, I would like to write out my experience in a single post that can be quickly referenced. As it turns out, this issue is much more prevalent than I first realized. Many of us have been suffering.

For those who are new to my journey, I was diagnosed with Adrenal Insufficiency in 2005 and immediately started on the brand name Cortef. I responded quite well to the treatment and only ended up in the ER once for vomiting and once for a horrible case of the hives. In 2008, my family moved to a new state and I got a new endocrinologist (Endo 2). My health insurance also forced me off of Cortef and onto the generic hydrocortisone (HC) due to the cheaper cost.

Suddenly, it felt as if my medicine stopped working. My anxiety returned. My depression cropped back up. I started to withdraw from society. I was slipping back into the pre-diagnosis Amber. Endo 2 immediately started me on fludrocortisone (FC) and changed my official diagnosis to Addison's Disease. But even with the addition of FC, my treatment seemed less effective. This led us to experiment with other types of Glucocorticoid steroids such as prednisone and dexamethasone (dex). Eventually, we decided on treatment that involved a small night dose of dex with a small afternoon "booster" dose of HC. This was my treatment plan for over three years.

Doctors are trained that the generic is medically equivalent to the brand name. No one thought to question the timing of my problems and how it correlated perfectly to when I was switched off of Cortef.

I moved states (again) and got a new endo (again). Endo 3 and I started changing around my ratio of dex and HC to more closely match the Circadian Rhythm of cortisol. This was based off of my research, not hers. I ended up firing Endo 3 after she proved she could not manage my Addison's. Sometime around this point (Fall 2011), I started to unintentionally lose weight. Constant headaches began. Persistent nausea arrived.


Fun fact? I had actually doubled my meds the day before because I wanted to avoid a crisis. It did not help. I found myself in the ER two weeks later despite stress dosing. My experiences were not agreeing with the expected outcome. I would feel worse over time with stress dosing, not better. One of our assumptions had to be wrong.

Generic hydrocortisone is not medically equivalent to Cortef.

Inactive Ingredients
Brand Name: Cortef Generic: Qualitest Generic: West Ward*  Generic: Greenstone**
Calcium Stearate
Silicon Dioxide
Microcrystalline Cellulose
Calcium Stearate
Corn Starch
Lactose
Sodium Starch Glycolate
Corn Starch
Lactose
Magnesium Stearate
Lactose Anhydrous
Lactose
Mineral Oil
Microcrystalline Cellulose
Silicon Dioxide Colloidal
Mineral Oil
Sorbic Acid
Sodium Lauryl Sulfate
Magnesium Stearate
Sorbic Acid
Sucrose
Sodium Starch Glycolate
Sucrose


Generic: Glades Generic: CorePharma  Generic: Lineage  Generic: Vensun
Lactose NF
Lactose
Lactose
Lactose Monohydrate
Pregelatinized Corn Starch
Microcrystalline Cellulos
Corn Starch
Cellulose, Microcrystalline
Microcrystalline Cellulose NF
Croscarmellose Sodium
Microcrystalline Cellulose
Silicon Dioxide
Croscarmellose Sodium NF
Sodium Starch Glycolate Type A Potato
Croscarmellose Sodium
Magnesium Stearate
Sodium Starch Glycolate NF
Magnesium Stearate
Sodium Starch Glycolate Type A Potato
Magnesium Stearate NF
Corn Starch Magnesium Stearate

*Note on the WestWard Generic: As of November 2013, WestWard is no longer producing their generic HC.

**Note on the Greenstone Generic: If you notice, the ingredients in the generic HC for Greenstone are identical to the ingredients in the brand name HC Cortef. The pills are even stamped as "Cortef." If for your insurance or your pharmacy refuses to give you the brand name Cortef, ask for Greenstone. It is the same brand name medicine sold at the generic price.

My mom was the one who actually discovered this. She was the one that remembered my health decline of 2008 and how it lined up with the timing of stopping Cortef. At first, no one believed her. We were all trained that the generic is medically equivalent to the brand name.

The next time my prescription was filled, she asked the pharmacist to order Cortef. I would pay the extra. Mom was determined to run a simple experiment. And guess what? Her experiment worked. She discovered something that 14 different specialists, 5 really scary tests, and 30 doctors appointments had missed.

I now refuse to take Qualitest Generic Hydrocortisone.

My Issues on Generic Qualitest

  • I felt sicker after I would increase my dose. Standard protocol dictates increasing our dose up to three times the normal amount in times of sickness. Yet I kept ending up in the ER when I was taking pro-active steps to avoid it. That was not logical.
  • My weight was dropping back to my pre-diagnosis size, even with an increased steroid dose. More steroids normally means more weight. I was taking more during times of physical stress and illness, yet I could not maintain that healthy weight. The extra pills seemed to do nothing.
  • 20-30 minutes after every pill I swallowed, I would have a reaction. Again, this was not logical. HC normally begins to peak in the blood stream around this time. I was supposed to gain energy, not lose it. These episodes would last 1-3 hours and correlated perfectly to the timing of my medicine. I wouldn't be able to see, or speak! I could barely move. Every day. Three times a day.
  • Constant headache. Constant miserable headache.
  • Constant nausea. Zofran was a friend. But I only took it when I was scared that I would actually vomit. Most of the time, I just suffered through the miserable feeling.
  • Ready for the scariest fact?
    • From 2005-2008, I was in the ER/urgent care twice in four years (0.50 times/year).
    • From 2009-2013, I was in the ER/urgent care nine times in five years (2.25 times/year).
That generic HC might look cheaper on paper, but it's a hell of a lot more expensive when you factor in all of those medical bills. I was slowly being poisoned with every generic Qualitest pill I swallowed. I would die without these steroids, but I was slowly dying with them. I am so thankful that the solution was as simple as switching back to Cortef.

Do you have Adrenal Insufficiency and...

  • Are constantly nauseated?
  • Have a never ending headache?
  • Still feel beyond miserable despite your doctors telling you that your dosage is correct?
  • Are regularly blacking out not due to another medical diagnosis? 
  • Have an insurmountable amount of fatigue? (Side note, this could also be due to Gluten.)
  • Remain sick despite stress dosing?
Check the manufacturer of your HC. Is it the generic pill made by Qualitest? Call your pharmacy to see if you can get off of it. Fill this out. Do you have an opinion on the subject? Please share it below in the comments!

And note that I am NOT the only one who has struggled with this. Here is someone's experience from seven years ago.

12/23/2013 Update: I received a very pitiful letter from Qualitest apologizing for the "inconvenience" or "concern" that this issue may have caused and have heard of multiple others receiving the identical letter.

Keep filling out FDA reports. Also, if you have also been poisoned by Qualitest, please comment below and share your story.

05/16/2016 Update: It was brought to my attention that Qualitest was recently bought out by Endo Pharmaceutical Inc. This means that a new company can look into our complaints, and work to remove the harmful and completely unnecessary ingredient Sodium Lauryl Sulfate. 

BUT this requires action on your part.

Please call 800-504-0122 and pick Option 1. Please ask to add your story to Jo Edson's case number EMI16-008926. I was on hold for about 20 minutes and then spent the next 20 minutes sharing my story with a very kind nurse.

Endo Pharmaceuticals mentioned how they were unaware of any harm caused by Qualitest HC. We should make them aware.

01/01/2017 Update: It was brought to my attention that Qualitest pills are now being marketed as PAR Pharmaceuticals. That means that if you have it in your file, "No Qualitest" you might still end up with Qualitest labeled as PAR. The amount of smoke and mirrors in the Big Pharma is ridiculous. The pills still appeared to be marked with a "V." If your pill has a "V" on it, try to switch to something better.

Tuesday, October 22, 2013

Cinco De Miler

The problem with an Adrenal Crisis is the fact that no one can tell you how long it will take to recover. Two weeks after the nightmare, I drove out to my alma matter for graduation. I carpooled with three other friends so that I wouldn't be driving alone. I was also still in denial about how weak my crisis had left me. Mind over matter, right?

I enjoyed seeing many people at graduation. They asked me how I was doing so I told them about the nightmare. I had told the story enough times that I no longer cried as I spoke of the details. It was interesting to watch their reactions. They all had very similar questions. Why did the ER ignore my medical alert bracelet that said "steroid dependent?" Their horror was another reminder about how the public needs to be more educated on Adrenal Insufficiency. I almost lost my life due to lack of awareness.

Graduation was that Saturday. On Sunday, I had a five mile race back in Dallas with an extra race bib that a friend from college claimed. Several of those close to me questioned the wisdom of me running such a race so soon after my hospitalization. I assured them that I was going to be extremely pro-active about my medicine to compensate for the added stress on my body. I did a very similar thing just recently when I wanted to test the limits of my disease.

Before the race. 5 miles to celebrate May 5th!
I ran that five mile race. I even set a new personal record. My time was 44:57 (8:59/mi pace) or over a minute FASTER than when I won 3rd place for a five mile race in February. That race felt so good! For the non-runners of the world, I do not think I'll ever be able to explain the joy that comes with running and running well.

After the race, I had to say goodbye to my friend as he started his drive to Iowa. I still had another friend staying with me so we decided to kill a couple hours at the mall before her afternoon flight. I wish I could tell you the details of that mall trip but I cannot. My memory is too hazy. I know at some point I lost my car keys and I lost them good. Mall security found them a couple days later. I had to be rescued by a friend who had access to my spare keys. This was brain fog to the extreme, not a good sign. I also began to get my low cortisol migraine. Another bad sign. I tried to be pro-active and take more steroids to stay on top of it, but it didn't seem to be working.

Somehow, I managed to get my friend to her plane on time. At this point, I was scared. I knew I shouldn't be alone. I texted a co-worker who I trusted and asked if I could just hang out at his apartment for the night so that someone could keep an eye on me. I did not feel well and I did not want to put myself in another situation where I was alone at the hands of incompetent EMT's without an advocate. Been there. Done that. Never again.

I honestly do not know how I drove to his apartment. He wasn't home when I first got there. When he arrived, he found me practically collapsed outside of his front door. I was having a hard time seeing things and my migraine was getting progressively worse. I took some more steroids and then collapsed on his couch. It was so difficult to move. After who knows how long, he woke me up and told me to move to the bedroom. He was nervous he was making too much noise in the kitchen and didn't want to disturb my sleep. I did, and proceeded to pass out on the bed. Then my cell phone rang.

I have no idea how I made it back into the living room to answer that phone call. It was my aunt informing me that they had successfully moved into their apartment down the road. I couldn't remain standing, so I grabbed my phone and then collapsed to the floor. This was not good. It was getting harder and harder for me to move and I could not focus on the outside world at all. I decided to just take double my night time meds (We refer to that as a "stress dose") and call it a night. I don't even think it was 9pm.

Well, my body decided to vomit every single one of those pills back up.

Dang it.

Inability to hold down medicine? Required to go to the ER.

After I vomited, the shaking set in. It wasn't the seizures from the nightmare, but I did lose my vision. I had to be escorted down the stairs. I called my aunt and informed her that we were off to the ER. Talk about convenient timing. She moved to my state only a couple hours prior. She was going to meet us at the ER.

They had to stick the IV needle in my hand.
It caused my hand to turn green a few days later.
This was a completely different hospital network than the one that almost killed me two weeks prior. I'm still boycotting that one. They started me on IV fluids stat and quickly administered the solu-cortef injection. This ER doctor and nurse were kind and compassionate. They understood my dire need to find a new endocrinologist and gave me a recommendation for my Endo #5. I got in to see her ASAP.

Do I regret running that five mile race? No. I did everything right. I actually had more steroids in my system on that day then I did for my half marathon yet I still could not keep ahead of the impending crisis. My body was screaming out that something was wrong. A five mile race should NOT have sent me to the ER when I was regularly running seven miles.


I am doing so much better now. April through August 2013 were perhaps some of the scariest months in my entire life. But life is full of seasons. I am so thankful that dark season appears to be drawing to a close.

Sunday, October 6, 2013

10,000 Hits


I meant to write a post to celebrate reaching 10,000 blog hits. Then life got busy.

Lo and behold, I'm now at over 10,000 blog hits. That is extremely exciting for me. When I started blogging, I did not know where my writing would lead me. I just knew I wanted to write. I wanted to share my story. I was done being silent. I was done hiding. I was done ignoring the elephant in the room.

My name is Amber and I live with an incurable disease.

Allow me to talk about it. Allow me to share with you my triumphs and my setbacks as I navigate my life with this beast. Allow me to raise awareness about chronic diseases so that others can improve their quality of life.

Am I diseased? Yes. Do my diseases define me? Oh heck no! I am so much more than a list of diagnoses. I am, and will forever remain, Clearly Alive.

I hope y'all continue to follow me on this journey. I owe you an update on my gluten free baking adventures. I never told you about the five mile race and subsequent ER visit on May 5th (PS- Five months ER free!!! Yay!). I have not even begun to write about Addison's and college or Addison's and living in South Korea. To summarize, I have much more to share.

Here's to a life of continual adventure!

Here's to a life that will always fight to be Clearly Alive!

Sunday, September 22, 2013

Testing the Limits

I am one of the most tenacious fighters you will ever come across. I am stubborn, focused, and determined. I refuse to stay beaten for long. I am also a runner. A runner who accomplished many things before she was told to stop running. A runner who had to start over. I will never surrender my love for running nor will I ever be able to explain that love. Running is as much a part of me as this disease. Heck, it's even a part of my marketing for my art:

clearly.alive.art 
artist. runner. blogger. engineer.

Ironically, the thing that pays the bills comes last on this list.

Well this runner is tired of people telling her to not run! When the annual Oktoberfest 5k came around, I decided I would go for it. I was unsure of how my body would react. I just knew I had grown weary of watching my friends post pictures of their 5k shenanigans on facebook as I sat stationary on the couch. Plus, competing in the 5k equaled a free entry into the Oktoberfest later that night. Although this Gluten Free girl can no longer enjoy her beer or funnel cake, I can enjoy the company and fellowship of friends.

That meant there were two demanding activities combined into a single day. Why not add a third?! Red Bull Flugtag. A team of students from my Alma Matter made it into the competition and I definitely wanted to see how they would do.

Yikes. Three events stacked on top of each other exactly five months after I was released from the hospital. My co-workers thought it was a recipe for disaster. I knew it was going to be a difficult and stressful day, but I did not want to surrender any activity. I might have several auto immune diagnoses, but they shall not control my life. I will partner with these beasts, listen for the signs and symptoms and hopefully never have another nightmare ever again.

So all that went down yesterday. And the results...

I ran with my cell phone in one hand and my emergency shot in the other.
At least I was balanced.
My 5k time was 34:17, or eight minutes slower than the exact same race last year. But I don't care! On 5k street races, the time doesn't matter. The focus is on the fellowship, the atmosphere, and all of the free food at the end. I greatly enjoyed jogging with a friend. I chuckle as I think back to the last 5k we ran together. I dragged him along at an 8:25 min/mi pace. This time, I was jogging slower than 11 min/mi and I was darn proud of it! If there was one thing that my nightmare taught me, it was I must learn to readjust my expectations and be flexible. What was considered a victory for one day might be near impossible to achieve the next. Anyway, activity one accomplished!

Onto activity two! We were in the sun for over four hours. My uneven sunburn definitely vouches for it. As for the team from my Alma Matter? Perfect scores of all 10's. Farthest distance flown with 72 ft. Second place only flew 42 ft. I am so proud of those students. You probably have never heard of this small university over in East Texas, but we do damn good work.



After Flugtag, some friends came back to my apartment to relax for a couple hours before going to Oktoberfest. It had been a long day already, yet we still had one more activity. We had fun.

How did I do everything yesterday? I ended up taking five times the amount of cortef I normally take. And even at 5x the amount, I went to bed last night with a severe low cortisol migraine. I am on a double dose of cortef for today as I continue to allow my body a chance to recover. I would be lying to y'all if I said I was not exhausted.

But I am so proud and pleased with how yesterday turned out. There were no ER trips. No hospitalizations. No need for the emergency injection. There was just a lot of proactive planning and a refusal to play the victim card.

I might live with an incurable invisible illness but I refuse to let it stop me from living my life.

Clearly Alive forever, y'all.

PS- Did I mention that the Texas Tomcats took FIRST in the DFW Redbull Flugtag?

Wednesday, September 4, 2013

The Nightmare, Revisited

Remember The Nightmare? We have answers.

Doctors downplay an Addisonian Crisis. If I take my medicine daily, I should never have one. Now there are certain triggers that I must watch out for. If I am running a fever, vomiting, or suffer from an unexpected yet severe injury, I must seek extra medical help immediately otherwise I could quickly die. But day to day living should not send me into a crisis. Recall Endo 3's phone call with me in the ER, "Amber, I don't think there was any way you could have gone into a crisis. You take your medicine daily. No. Are you sure you aren't depressed?"

One of the trickiest things about this disease is the health decline happens so gradually that many people do not fully realize how sick they are until it is too late. On April 19th, I did not wake up feeling amazing and then suddenly crash towards full blown crisis. My health had been slowly declining for months. Because it was so gradual, no one prioritized it. I did not even have the words to express how bad it had gotten.

It all started with weight loss.

Side note: I also went through many different hair styles my last year of college.
July 2011. Aug 2011. March 2012. May 2012.
I was shocked when I fit into that size four dress. I tried it on as a challenge.
I started losing weight at the beginning of my senior year of college. I didn't change anything about my medicine, diet, or lifestyle. I didn't even realize it until a couple people started commenting. When I finally weighed myself, I had dropped a couple pounds! I graduated college and began working full time August 2012.

The problem came in the fact that I was still losing weight! I couldn't rationalize it, which made me nervous. Add to the fact that any time I ate a meal I felt sick. I could never figure out what part of the meal was making me feel sick, I just dreaded eating.

But not only was I feeling sick, I was also getting sick. An ER trip in November ruined my two year ER free streak. Christmas, I was sick again. I actually stress dosed my medicine on Christmas Eve and still slept through the entire day. I could not move from my bed. New Years, again, sick. I came really close to collapsing in the urgent care clinic on January 2nd. (Want faster medical service? Turn super pale and black out in front of the waiting room. That'll get you noticed!)

And the weight kept coming off. 

October 2012.
I ended up losing a little over 30 pounds and dropping four pants sizes. While some women rejoice at that thought, it frightened me. My weight is a function of my health. If my medicine is correct, I should neither gain nor loose weight. Yet I was a 5'8" female with size fours falling off of me. Something was wrong.

I tried reaching out for help but was met with answers such as "anxiety" or "depression." Medical community, why are you so quick to label? Yes, I had started a new stressful job. Yes, I told you that eating food made me feel sick so I dreaded eating. Yes, I had lost 30 lbs without trying. But do not call that depression! I, a fairly intelligent human being, am telling you that it is not depression. Look for the true root cause!

The week of the nightmare, I knew something was wrong. Several co-workers were concerned about me because my dizziness had increased drastically. I actually got super dizzy during a run and fell, bloodying up both of my knees and my hands.

I'm smiling in this picture as my knees are still bleeding.
I was so dizzy and out of it that Wednesday before my crisis.
I knew I was on very thin ice. Heck, that's why I went to my endo on April 19th! That's why I took the appointment with the PCP immediately afterwards. Yet no one realized truly how sick I was until the seizures hit due to the impending crisis. And they didn't realize how desperately I needed help to become stable again until I was in the ER two weeks later

Priority was finally escalated. I could no longer drive. I would get energy crashes that would cause me to either black out or barely be able to move and unable to speak. I was scared to live alone so my mom moved back in with me for half of May and all of June.

Eight different specialists, countless doctors appointments, and who knows how many medical tests later, we have answers. What caused the Nightmare on April 19th?
  1. My steroid dose was much too low. I was on less than half of the recommended daily dose for my medical condition.
  2. I was being poisoned by the generic hydrocortisone Qualitest. Every single time I took my life sustaining medicine, I was having a reaction to it. Talk about frightening.
  3. I was severely B12 deficientCheck out the symptoms of low B12. I'll most likely remain on the B12 shots for life.
  4. I have a gluten sensitivity. Take that medical community! I wasn't feeling sick after every meal because of depression! Try food sensitivity! </rant>
  5. I was diagnosed with POTS. It turns out my heart rate should not jump 40-50 bpm any time I change position.
Each of these answers contain actions that I can take to improve my quality of life. We've increased my daily steroid dosage. I will now only take brand name Cortef. I have gotten used to giving myself B12 shots. I am eating Gluten Free as of September 1st, 2013. We're still working on getting the POTS under control. But honestly, I've been suffering with that for as long as I can remember. Just don't expect me to stand up quickly. I'll fall over.

While the climatic crash in the PCP's office happened quickly, I had been slowly heading towards the crisis for well over a year. These types of crises never just happen. They are always triggered. But knowing the trigger allows you to prevent the next one. These life style changes will allow me to remain Clearly Alive for quite a while. I haven't felt this "healthy" ever. I am in a really good spot, and that is exciting.

PS- On the weight thing, I have gained back over 20 lbs. I'm at a healthy weight again!

July 2013. It was windy in the windy city.

Thursday, August 15, 2013

Starting Over

For some reason, my state decided to have cooler temperatures today. We were at temperatures over 100 last week, but today it didn't reach much higher than 90 degrees. COLD FRONT!

The beautiful weather made me want to try to do something that I haven't done in a good while. The last time I did this, I ended up in the ER. I also had a doctor forbid me from doing it for at least a couple of months.

Well, it has been a couple of months.

I went on a run today.

Just a mile.

It took me over ten minutes.

And I took a small dose of HC before.

I cannot look back and compare that accomplishment to my previous ones such as the Turkey Trot, Hot Chocolate 15k, and Rock-n-Roll Half Marathon. I'm no longer at that level of fitness. That nightmare wiped me off of my feet and left me couch bound for a couple months.

But I'm ready to start over.

I'm ready to return to one of my loves.

I'm ready to prove to the world that I will always be Clearly Alive.

Thursday, August 1, 2013

Kara

Happy Birthday Kara.

It has now been two years since Kara passed away from Leukemia. It's crazy to think how one woman, one dear friend, touched and influenced the lives of so many people that I find myself still thinking about her infectious smile, her famous hugs, and her loud voice in the dorm lobby going, "AMBURGURLAR!!"

Tack Prom, 2010
She was an amazing woman. All who knew her agree with that statement.

I remember when I first found out that she was diagnosed with Leukemia. She had not been feeling well for quite a while, but kept getting sent home from the doctor's offices because they couldn't find anything wrong. Well, in one ER trip they quickly discovered that her blood work was far from normal. She was rushed to the big medical hospital in the main city, two hours away from our college town. It shook our circle of friends. It shook our dorm community. Our entire university felt the pain of the diagnosis.

Kara.

Leukemia.

How do you react to that? How do you respond when one of your close friends suddenly discovers they have a blood cancer? There is some relief in the diagnosis. It is an explanation for the suffering and pain. But, the name is so scary. Leukemia. What does that even mean? What will her life look like?

I remember talking to her about being diagnosed with a disease. We both had fancy names attached to our aches and pains.

During one of my hospital visits with her, I received a call from my doctor. I stepped outside of her room to take it. Some of my blood work was not normal. They were going to immediately start me on some new and different medicine that would hopefully get me feeling better. I walked back into Kara's hospital room in tears. They had discovered what was off in me! I wasn't imagining my pain! The blood work backed it up. I remember her hugging me and smiling. There is a relief in knowing the name to the suffering.
One of our visits, 2010
I struggled greatly with her diagnosis, especially when my Addison's flared up that year. I was complaining to my friend about how awful my disease was, and how just frustrated at life I was. And then I paused as it hit me. My disease could still allow me to live a "normal" life. Kara's disease could kill her.

She did beat it once. And then it came back.

I remember sitting with her late in the dorm lobby one night before she left for the hospital again. She didn't know if she would return to our college. She didn't know what would happen. She was well known for always having a smile and always being optimistic. But this time, she was tired. She just sat there crying, scared, and angry. She had already beaten Leukemia. Why did it come back? Why do diseases happen? She had planned out her life. She was going to teach electronics to high school students. And she was going to be damn good at it.

I didn't have any answers for her. All I could do was hug her, listen to her, and cry with her.

Cancer is an odd thing. It can strike suddenly, and with a vengeance. Kara died on her 22nd Birthday. We were thankful that she was no longer in constant pain, but a cruel cancer had stolen one of the most bright and cheerful women I have ever known.

For a little while after her death, I forbid myself to complain about living with Addison's Disease. I could at least still function with my disease. Kara's disease killed her.

But that is not a healthy way to cope.

Addison's Disease does suck at times. Actually, my optimism and cheery outlook on life will not allow me to mention how it is awful pretty much 100% of the time. But stating that I'm better off than a "Cancer Patient" is not beneficial. 

I am allowed to mention the discomforts of my disease. I am allowed to state at times that this disease is scary. At times I get scared. But as a whole, I can choose to remain optimistic. I can choose to focus on the positive in life. I will choose to remain Clearly Alive.

And Kara, I still love and miss you.

Love,
Your Amburgurlar

Society of Women Engineers Dinner, 2009