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.