Sunday, February 24, 2013

The Spoon Theory and Stress

I came across another interesting article called The Spoon Theory. Although the author is writing about Lupus, some of the things she describes are very similar to that of Addison's Disease. She speaks of aches, pains, and pills. Yup. I have all of those.

She uses the analogy of spoons to talk about how she has a limited amount of resources to handle the day. I can relate. I make conscientious choices every day so that I can hopefully hand everything. Y'all know I love to run. But I cannot run over five miles and then expect to work a full day as an engineer. My brain fogs out on me. It is the most annoying phenomena that is rather common with AD. Sometimes Gatorade can bring me out of it, sometimes extra hydrocortisol, and sometimes I just end up going to bed hoping I can wake up alive and feeling better the next day. There have been numerous times that I've gone to bed around 7 pm because I just ran out of spoons. Better luck next day.

Let's make it more Addison's specific. I produce no cortisol (the "stress" hormone). Cortisol helps the body respond to stress, be it physical, emotional, or mental. Although some doctors state that we should only be concerned about physical stress such as a fever or a broken bone, any one who lives with the disease will tell you that extreme emotional or mental stress can leave them just as wiped as physical stress. We must be mindful of all three. We don't want to unexpectedly run out of spoons.

Well I'd like to confess something to you. I managed to combine all three types of stress this past week which made me just so unstable. I'll start out by saying I've been under a great deal of emotional stress. That'll be the foundation, the baseline. The extreme emotional stress cost me a couple of spoons.

So let's add some physical stress. Two weeks ago, I raced a 15k. I took an extra 5 mg of HC before the race and rested the rest of the day. One week ago, I decided to run the same distance, 9.3 miles. Albeit, my friend and I completed the 9.3 miles 15 minutes slower than my race time, but we weren't racing. I figured since it wasn't a race, I would try just taking an extra 2.5 mg of HC. Two hours after I finished the run, I sprinted frequently in my indoor soccer game. I took less cortisol that Saturday, but ran more. I had to surrender a spoon. Oh, and then the foot pain came. For the past week, every time I walk, my right foot hurts. It is such a frustrating feeling. I'm supposed to be training for a half marathon, and now every step I take hurts? I don't want to deal with this set back on top of my emotional stress. The stress of possible injury stressed me out even more! Good bye spoons!

But this story wouldn't be complete without some mental stress. For those that don't know, I am a working engineer. I was trying desperately to wrap up a major project before my next assignment on March 1st. The problems we are trying to debug are even puzzling the senior engineer on the team. I see the spoons slip away from me.

One of my friends called me out on it. He didn't know to use the terms "low cortisol" or "extreme stress." He just called me a crazy female. Oh. I'm normally crazy, but not in the extreme emotional unstable way. That made me realize I tried to accomplish too much this past week. I can live a normal, healthy life. I just have to be aware of my stress level.

This upcoming week will be different. Instead of ignoring the emotional stress, I will acknowledge it. Instead of pretending that I am a super human, I will realize that I probably should not run 9 miles and then sprint for 40 minutes on a possibly injured foot. And as for my work project, I've done all that I can do. I will spend this week tying up loose ends and preparing the hand off to the person that shall complete it for me. I do not have to get stressed out over it.

After all, I wouldn't want y'all to forget that I'm clearly alive.

Wednesday, February 20, 2013

Mom's Letter: No Tea!

Dear Amber,

I’m glad you don’t recall much about that ER visit other than a few moments. I’ll do my best to fill in some of the blanks. I had been in contact with both your primary care physician and endocrinologist. They BOTH instructed me to wait (my blood is boiling now recalling the conversations) to see if you could keep your morning meds in. If you couldn’t keep the meds down THEN I was supposed to take you to the ER & request saline with cortisol. So, that’s mostly what I did, except I didn’t wait for your morning meds. I took you when your vomiting was about 6 minutes apart. You vomited in the car, which meant the episodes were getting closer together.

I walked you into the ER (you wouldn’t have made it from a parking spot) sat you down, tried to tell the attendant what was going on while getting yelled at by a security guard that I was parked in the wrong place & had to move my car. I moved the car and ran back inside and found you sobbing. Again, I told the attendant to call your endocrinologist or the endocrinologist on call, and begged them to hurry up because you were about to vomit again. I felt like I was in a scene from a movie where the character is dead but talking to the living and no one can hear or see her. I was talking, but no one was hearing me.

They finally began paperwork, and the rude male nurse wouldn’t allow me to answer the questions he was barking at you. I told him you were due to vomit. He didn’t listen and made you stand on the scale. Then you vomited on him! I actually was sad that there wasn’t more in your stomach to deposit on him. He then let me answer questions and took you back to a room.

The nurse came in and complimented you on what pretty white porcelain skin you had, stating that it was almost the color of the sheets. Her kind compliment broke the tension and I just laughed (it was better than crying) and told her that usually you weren’t porcelain white, but even extremely ill, you were beautiful. She smiled (knowing that I was scared and frustrated) and calmly stated that they were in contact with your endocrinologist and would take very good care of you. She winked at me later while she was commenting on the color returning to your face because we both knew you were getting better.

At that time, we didn’t have the knowledge or the key words “Addisonian Crisis” or “Cortisol Dependent”, and certainly had NO idea how life threatening this was or is. Surprisingly, neither did the doctors or the ER staff! We didn’t know that you appeared coherent but in reality, your brain had shut down and wasn’t functioning properly.

Thankfully we lived through it and learned. NEVER again will you vomit more than once without going to the ER and we now have medical documentation to explain why immediate treatment is necessary.

Love you much!

PS: I’m still on that “tea kick” and I’m happy that you are actually willing to try tea again. ;-)

In response to No Tea!

Sunday, February 17, 2013

Estrella Foothills

I ran cross country in high school. I went to high school in a desert. A desert has ridiculously hot weather. Therefore, I ran cross country in ridiculously hot weather.

We would have practices five days a week. Monday mornings were hill workouts at 5:15am. Friday mornings were interval trainings at 5:30am. Tuesdays through Thursdays, we would run after school in the heat. It was not uncommon for me to run five miles in temperatures above 100 degrees. I would drink a lot of gatorade and take extra cortisol. But sometimes I would still end up in my “coma state” for a couple hours... or sometimes days. I now realize that this “coma state” is better known as extreme fatigue. I struggle speaking and moving and can barely form coherent thoughts. It’s not pleasant.

We would sometimes have Wednesday races after school in the ridiculous heat. There was one particularly bad race during my senior year. The hosting school thought about cancelling the 5k race due to the extreme heat. It was 117 degrees. The coaches laughed at the thought. Their teams trained in this heat daily! They can handle it!

This course consisted of weaving 2.8 miles through the desolate desert and then running a lap around the track before crossing the finish line. I remember the start of the race. Oh it was hot outside! I also remember thinking I would not be able to finish this race. I was in shape, but this heat was ridiculous. I almost collapsed towards the end, but one of the volunteers assured me that I only had a short distance before I would reach that blue track. She was actually supposed to be manning a water station, but she had run out of water long before I had reached that check point. I worked up the determination to finish.

I remember stepping onto that blue track, extremely dizzy. I knew I just had to put one foot in front of the other, even if I couldn’t see where that foot was going. My vision was going in and out of focus. Normally, I “kick” at the end with a sprint, but I had nothing left to give for this race. I don’t even remember seeing the finish line. I faintly remember two strong guys quickly grabbing my arms to keep me from collapsing. I was crying because I was so confused. Once again, I did not know who or where I was.

My mom was right there at the finish line. She knew something was wrong. Actually, everyone who knew us knew something was wrong with me. They dumped water on me to cool me off and forced me to immediately drink gatorade. My mom forced me to take some extra cortisol. I was mad at her at the time, but she wouldn’t take no for an answer. Slowly, I began to be able to speak and remember who I was. There were ambulance sirens in the distance. A couple runners had suffered heatstroke that race and were taken by ambulance to the hospital.

For the rest of the night, I was on edge. I cried a lot. I couldn’t focus. I couldn’t express myself in words. Everything overwhelmed me. It took a couple of days for me to recover from that race. And by recover, I meant return back to my normal personality and not a by-product of low cortisol. 

That was by far the stupidest race I ever finished. However, it did teach me that there are some times that the risks outweigh the benefits and the danger is not worth it. My determination carried me through this race, but much to the detriment of my physical health. As I proved to myself last week, I can run long distances. BUT I must listen to my body and know when I push myself too far. Also, six weeks until my half marathon.

This picture was taken immediately after I crossed the finish line.
I didn't even know who these people were. But they knew I was not doing well.

Sunday, February 10, 2013

A 15k?!

I'm not the type of girl to sit back and be passive. If someone tells me not to do something, I normally end up doing it. A bit rebellious? Yes. Has this gotten me into trouble before? Yes. But I also think this fighting spirit has helped me greatly deal with Addison's Disease.

Also, I have always loved running. I just can't explain my love of running. I'm sure I come across as a crazy person. But my relationship with running is very finicky. If my Addison's Disease is off, I can't run or train. Many runners give me the advice to just "push through it!" No. I refuse to send my body into a crisis for my own selfishness. I have to listen to my body. I'm easily dehydrated and easily fatigued. I always assumed that I would hit a wall with distance. I told myself that I shouldn't try for the longer distances. I should be content with the "easy" 3.1 miles.

Recently I've learned how to better adjust my medicine and food so that I can handle longer distances. In November, I ran the 8 mile Turkey Trot. While I considered that a huge milestone and triumph, I did end up in the ER less than a week later. Not good.

About at month ago, I spoke with my endocrinologist and we tweaked some of my medicine. I openly told her about the couple of longer distances I had coming up. She told me how to adjust my medicine so that I would be able to recover faster.

Last Sunday, I ran a 5 mile race. I got third place for my age group!!! While that might not seem that significant, I was always the slowest girl on high school cross country. Looking back, I've realized it was because I was not adequately adjusting my medicine.

The RunOn! Chicken was kind enough to pose for a picture with me.
Also, the award was a snow globe. How awesome is that?

Yesterday, I wanted to test my boundaries again. I have Addison's Disease, but I'm done living in a box. My disease is incurable, but that does not mean that my life has to be miserable. I can do intense physical activity, I just have to plan ahead and be extra careful. I took additional medicine and was proactive about remaining well hydrated.

I had a co-woker who ran with me the first 8 miles.
I know I couldn't have had this good of time if I had been running alone.

I finished it!!! Addison's Disease, suck it! I ran a race that most healthy people would never dream of doing. AND I ran it at a 9:50/mi pace. Now let's just hope I don't end up in the ER less than a week later. But if that happens, oh well. This is the nature of this disease.

Next goal? A half marathon the end of March. I have completed a half marathon before (in 2008), but I didn't train and it took several days for my body to recover from it. And by recover, I don't mean "Oh, I'm sore." I mean "Oh, Addison's Disease, I hate you right now." I want to try to actually run this half marathon. Once again, I am pushing the limits of my disease.

Addison's Disease, you do not control my life.

I am Clearly Alive.

(And Clearly Crazy. That's the only way I can rationalize my love of running.)

I totally ran 9.3 miles for the chocolate.
It was totally worth it.

Saturday, February 2, 2013

The Importance of Perception

I recently read a study conducted in 1999 by The British Psychological Society. The full study can be found here, however I will provide a brief summary for those not overly excited by statistical analysis. The goal of this study was to determine how someone’s attitude towards their chronic disease affects the way they cope with a specific focus on Addison’s Disease. Before I discuss this study more, I would like to quote a paragraph from it.
“Addison’s disease (AD) is a rare disease with an incidence rate of about 40 to 60 cases per million adults (Orth, Kovacs & Debold, 1992). Patients suffering from this disease report a wide variety of non-specific complaints including weakness, fatigue, general malaise, weight loss and gastrointestinal symptoms, which all have a biological basis in adrenal insufficiency. As AD shares many symptoms with other disorders, differential diagnosis is difficult. Treatment consists of a therapy in which the hormonal deficit of cortisol and aldosteron is replaced by medication. Without this medical treatment, AD is life threatening. Therefore, when diagnosed, patients are taught that an active life of normal length can be led as long as they observe the prescribed medication regimen (Orthet al., 1992). This sounds simple, but medication intake is bound to a rigid treatment regimen requiring rather complex and demanding self-care behaviours, leaving the patient with quite a responsibility. Patients are instructed to increase their medication intake in the case of physiological or psychological stress, minor illnesses, dental treatments and sports. However, because a gold standard to determine the right dosage of medication is lacking, the possibility of an overdose or underdose is always present. Moreover, clear criteria for adequate self-care are often lacking or only stated in such vague terms as ‘get enough rest’, ‘watch yourself’ and ‘take good care of yourself’ (Knapen & Puts, 1993). Education of the patients by medical practitioners almost entirely focuses on the medication regimen. The patients themselves must discover which actions are instrumental in keeping AD under control. In sum, the treatment of AD requires active involvement on the part of the patient and may cause great personal distress when the symptoms react less well to medication. In addition, AD patients greatly differ with respect to actual physical and psychological functioning (Knapen & Puts, 1993): AD causes little discomfort for some, while others experience AD as extremely burdensome. It has therefore been argued that cognitions and the way patients try to cope with their illness play an important role in functioning in AD (Knapen & Puts, 1993).”
I like how that paragraph speaks of Addison’s. It’s always encouraging for me when someone else can put into words my complaints or frustrations. When I don’t feel well, I have such a hard time explaining how I don’t feel well because it’s not localized in one specific area. When I dialogue with my doctors how to feel better, I am often given vague advice such as “rest,” “eat healthy,” or “don’t stress” (Ha. Right). So much of living that “healthy normal life” comes from trial and error. Over the years I have had to learn through experience what taking too much cortisol feels like and what taking too little cortisol feels like. FYI, neither were that pleasant.

Back to the study. 63 Addisonian Patients ages 18-65 were interviewed with specific focus on how they viewed their disease. The conclusion? “Patients who use avoidant emotion-focused coping strategies have more difficulty in adjusting to chronic disease than those who use more active problem-focused coping strategies.” At one level, it’s odd to think that my attitude towards my disease plays such an important role on how functioning I shall be in society. I have no cortisol. The inner cortex of my adrenal glands are dead. A happy optimistic outlook on life cannot jump start a dead organ.

Ah, the cliche question.

However, experience teaches the importance of perception. Is the glass half empty or half full? There have been times in my life that I have drifted towards the “avoidant emotion-focused coping strategies.” I’ll be frustrated and bitter that I’m diseased. I focus on all the things that I cannot do. I draw attention to all the times my doctor crushed my dreams reminding me of my limitations. And during those times I grow more and more miserable. My symptoms increase dramatically. There seems to be an ever increasing pressure on my chest that makes it difficult to breath and I feel like my life is being lived inside an ever shrinking box. I know I don’t feel well, but I also don’t feel like I can change anything. So then I feel worse and I only grow more miserable and depressed. It strains all of my close relationships and scares me. If this miserable feeling is what they call life, then why is it worth it?

I try to not stay in that mindset for long periods of time. Recently, I have been trying to make purposeful choices to remain optimistic and hopeful. Things like blogging, focusing on triumphs instead of setbacks, and no longer viewing my disease as a scary beast are all my ways of telling Addison’s Disease, “You do not consume my life.” 

Instead of feeling disappointed that I must live according to a semi-regular schedule, I will plan and allocate time so that I can do spontaneous things with close friends. Instead of focusing on how exercise stresses my body and can send me into a crisis, I will dialogue with my doctor how I should adjust my medicine so that I can run long distance races without killing myself.

I will use problem-focused coping instead of avoidant emotion-focused coping. I have Addison’s Disease, but I am so much more than a gal living with an incurable autoimmune disease.

I am Clearly Alive.