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.