Thursday, May 30, 2013

Fix It

I work as a product engineer in the semi-conductor field. My goal is to identify a problem as quickly as possible, figure out how it happened, and fix it. I get bonus points if I fix it in such a fashion so that it will never happen again. My entire job revolves around fixing problems.

Many of my friends have a similar drive. When they see a problem, they want to fix it. I have actually met very few people that don't want to fix a problem. Step One: Identify Problem. Step Two: Solve problem. Step Three: Congratulate yourself on a job well done. Step Four: Move on.

But what happens when the problem cannot be fixed? 
How do you react? 
How should you respond? 

There is no fix for my disease. There are only patches, only Band-Aids. The daily medicine I take is not to cure my disease, but rather to try to improve my quality of life. This is something chronic. I have been wrestling with it for years. Also, this will not go away. I will continue to wrestle with this chronic disease for the rest of my life. I understand that people struggle with knowing how to react to a chronic illness. They want to fix it, and can't. They want to remove my suffering, and can't. They want to eliminate my pain, and can't.

I understand that struggle. As someone who battles a chronic disease, please allow me to share some words of advice. I know that you would do anything to fix it for me. You would do anything to remove my disease, to end my suffering, to stop the occasional health nightmare. You can't. You cannot fix my disease, you cannot prevent my pain. You can only watch. That is hard for you. But it is ok. I do not expect you to be able to fix this for me. Please do not try to fix it. You will drive yourself mad. That will benefit neither me nor you.

I realize that you might not know what to say. That is ok. Please do not try to compare my energy crashes to someone who did not get enough sleep the night before. When I open up and mention some of my struggles, do not tell me to consider those "worse off" than me to help me feel better. Do not tell me, "At least it's not cancer." Sayings like that do not help me, nor do they help you. Also, do not be afraid to mention your aches and pains. "But this is nothing compared to what you suffer through everyday." Y'all, pain is pain. Am I constantly nauseated with a low level headache? Yes. Does my headache make your back ache any less painful for you? No. Never be afraid to admit that you do not know what to say or how to respond.

I can see that you do not always know how to react. You ask me about my plans for the weekend and then are surprised when I tell you that I don't know them. As of late, I cannot plan. One hour I feel fine, the next hour I am struggling to move and can barely speak. However just because I cannot plan, please do not stop inviting me to things. But do not get disappointed when I have to cancel or turn them down. If my energy is good, I can go. If my energy is bad, I will have to withdraw. Unfortunately, this isn't something I can plan out. Please understand that. Each day is a new challenge, and frankly, each hour. Also, it is my responsibility with how I handle the disappointment of having to say no. Not yours. Please do not cut me out of of your life. But do realize that my life has become unpredictable.

You cannot fix my chronic disease. You might not know what to say about my struggles with my chronic disease. You probably don't know how to react when my disease flares up. So what can you do?

Accept it.

Accept me for who I am. I don't expect you to always have the perfect words. Don't expect that of yourself. I understand that you might grow frustrated with my flakiness, but please try to understand that this is outside of my control. And believe me, I know you would do anything to take this burden from my life. Because a life with a chronic disease does look different than a life without a chronic disease.

I am still Clearly Alive.

Sunday, May 19, 2013

The Importance of a Story

My family moved around quite a bit during my childhood. I used to describe it as less than a military brat but more than the average kid. This makes it difficult for doctors to see my history. They only see a snapshot, a picture. We have to tell them my story. And they have to be willing to listen.

I moved states summer 2008. My original diagnosis records were lost, or jumbled up beyond recognition. These records were from before the time where everything was digitalized. I don't know what blood tests my first endocrinologist ran. I know my baseline cortisol level was low enough for him to go "Adrenal Insufficiency" but I don't know the numbers. I do believe he also ran the ACTH stim test, but I never saw the results. When I moved, we had the hardest time getting those original medical records to my new endo. My second endo was left with a lot of questions. We had no answers for him.

This second endocrinologist ran a whole battery of tests to try to answer his questions. He was the doctor that said "Addison's Disease." I saw this doctor all through college, even though my college was several states away. During my junior year of college, I started struggling more with my health. I was also reaching the limits of his medical training. He openly admitted that he had never met an Addisonian patient like me. First time I heard that, I thought, "Oh great. I'm one screwed up failure." I realize now that is not what he meant. I genuinely puzzled him. What he studied in school did not match up with what he saw in my life. He recommended I find a third endo in the same state as me who could keep a better eye on me. I did.

I saw her for several years. Then the week of April 14th of this year, I just felt off. April 19th was especially bad. I called her office asking her for advice. She ordered some blood work and said I should go in to see her that afternoon. The appointment was a waste of time. She didn't know what to do with me so she gave me a card for a primary care doctor down the street. I still felt beyond awful and incredibly dizzy so I decided to call the PCP and see how soon I could get an appointment. They could see me immediately.

In that PCP's office was when I started slipping rapidly towards a crisis. I went from being confused and dizzy to seizing up and fading in and out of consciousness. The doctor had the wisdom to call an ambulance and rush me off to the ER. When I finally reached my third endo by phone, she had the audacity to tell me, "Amber, it's impossible for you to go into a crisis. You took your medicine today. Are you sure it's not depression?"

If you read my blog, it's obvious that I'm not depressed. Addison's disease does suck at times, but I write to remind myself about the Importance of Perception, and how I choose to be optimistic. I choose to fight for my health. My whole goal is to be Clearly Alive!

The irony.

I immediately tried to find a fourth endo because my third endo lost my trust. Once again, this new endo doesn't have all my blood work. He never saw me pre-diagnosis when I was chronically underweight, constantly sick, and tan year round regardless of time spent outside. He just saw a girl who has been on steroids since 2005. He had the audacity to tell me that I never had Addison's disease and none of my doctors believed I had Addison's disease. I just suffered from anxiety and depression.

He does not know my story.

I went to my fifth endocrinologist this past Thursday. It's a real pain to be missing that original blood work. The doctors don't have my history. They just know the actions taken. First endo said "Adrenal Insufficiency" and started me on hydrocortisone. The second endo said "Addison's Disease" and added fludrocortisone. The third endo said "Depression" and the fourth endo said "Anxiety... And you never had Addison's." The fifth endo said it didn't matter the name, Primary Adrenal Insufficiency, Secondary Adrenal Insufficiency. Fact is that I'm on steroids now and I will be on steroids for life. The focus is on improving my quality of life.

I have an interesting story. I'm not sure where my journey will lead or why I am gifted with this unique  path. I will continue to share my story with the hope that I can encourage others, and frankly, encourage myself. Now, there are still many unanswered questions. Why did I immediately vomit all of my night meds on May 5th? Why was I starting to slip into a crisis on April 19th? We are missing a piece of the story.

Here's hoping we can find it quickly. Although still frustrated, at my core I am still Clearly Alive.

**UPDATE** After much hunting, my father was able to locate the copy of my original diagnosis papers. The numbers are there, however they only provide a brief snapshot, a discrete moment in time. We must consider the entire story.

Wednesday, May 8, 2013

A Brief Update

I'll be completely transparent in this post. I am frustrated. I am frustrated with Addison's Disease. I am frustrated with my health. I am frustrated with a couple recent events. However, this frustration just makes me all the more determined.

At a later point, I'll share more details of these two stories. Right now, I'll just give a brief summary. On April 19th, I was taken by ambulance from a doctor's office. I was slipping quickly into a crisis. I rapidly went from just being confused and extremely dizzy to full out body seizures and slipping in and out of consciousness. To say that it was scary is a huge an understatement. I ended up spending the night in the hospital.

We still aren't sure what triggered it.

This Sunday, I ran a five mile race for Cinco de Mayo. I actually set another personal record in this race! Again, I'll share more details on another post. But I do want to point out that I was being extremely pro-active about my medicine.

Sunday night did not go as planned. I started feeling awful in the afternoon and it just got progressively worse. When I vomited up the entirety of my night dose of meds instantly, I knew it was going to be another night in the emergency room. This time there was no ambulance, nor overnight stay in the hospital. Not nearly as scary as two weeks ago. But still frustrating.

I'm not sure why my Addison's Disease is misbehaving now. Something is wrong. Something is off. Now the hunt to find out what.

I refuse to surrender my life to this darn disease. I am going to fight for an answer. I am going to fight for an explanation. I am going to fight until I get my life back.

I am Clearly Alive.