Based on the lab results, the Endo team also diagnosed me with primary adrenal insufficiency, a condition where the adrenal glands (the ones that basically enable your entire body to function during stressful situations) can’t make enough adrenaline to initiate and maintain the fight-or-flight response. So instead of gearing up when my body needs a boost, I’ll end up vegging out a.k.a. cataplexed a.k.a. temporarily paralized. It sounds pretty weird, and it feels even more weird than it sounds. As in I’ve had moments where I’d completely collapse in the middle of something – standing, sitting, talking, eating, doing the laundry, ANYthing — and just fall to the floor. The worst part is, my brain is completely awake. I can hear everything and remember everything, so I get the bonus of feeling extremely embarassed when I cataplex in a public place (e.g. parking lot of UP Town Center, grocery, my daughter’s school play – been there, done that >.< ) On top of that, I can also FEEL everything. Once, I cataplexed outdoors and it was nighttime, so nobody at home saw me. I was on the grass unable to move for a few minutes, feeling a bunch of creepy crawlies on my arms and legs. *shudder* Hassle!!! I like how the medical staff are very considerate of that fact ever since I told them about it, so even if I’m completely defenseless, they’d tell me everything that they need to do (pinch, poke, insert needles, sternal rub, etc.), they try to keep painful stimuli to a minimum, and apologize in advance (and also afterwards when I’m more responsive). I really appreciate their sensitivity.
My adrenal insufficiency is actually just part of a bigger endocrine problem – autoimmune polyglandular syndrome. Based on my history of having an autoimmune thyroid problem + narcolepsy with cataplexy (also autoimmune in nature) + minor allergies and food allergies during childhood (hyperreactive immune responses) + late onset/ acquired (as in not congenital = since birth) adrenal insufficiency = Autoimmune Polyglandular Syndrome. It’s basically a syndrome where any organ that produces any hormone in your body can get attacked by your own antibodies and eventually pffft out. That also raises the possibility of having other autoimmune problems like multiple sclerosis, diabetes, hyperparathyroidism, premature menopause/ ovarian failure, etc. in the future. I have to admit, it looks pretty dismal…and that is why I have armed myself with a few key verses from the Bible that remind me that God is good all the time and that I can count on His Spirit for the strength and courage that I know I will not be able to manufacture on my own. These are the verses that never fail to soothe my fears right away:
“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.” – Jeremiah 29:11 (NIV)
For God did not give us a Spirit of fear but of power and love and self-control. – 2 Timothy 1:7
There is no fear in love. But perfect love drives out fear, because fear has to do with punishment. The one who fears is not made perfect in love. – 1 John 4:18 (NIV)
Those are my “weird health issues” so far. I’ve been having some additional symptoms that I haven’t attributed to any of my existing diagnoses yet, so I made a category for them here on my blog, in the hopes that I’d be able to figure them out eventually, or get some nuggets of wisdom from other people who have had the same experience or are familiar with these rare diseases.
If you’re curious (I was, so I looked them up… research is right up my alley, anyway) as to how rare these conditions are, here’s what I’ve found so far:
- Prevalence of Narcolepsy with Cataplexy: 25 – 50 cases per 100,000 (in Western countries); no data for our country
- Prevalence of Autoimmune Polyglandular Syndrome Type 2: still looking; adrenal insufficiency is a rare component disease, usual component diseases are Type I diabetes and autoimmune thyroid disease
- Prevalence of Primary Adrenal Insufficiency: 100 – 140 cases per million (in Western countries), incidence: 4 cases per million per year in Western countries; no data for our country
Me: BINGO!!! It’s like winning the opposite of the genetic lottery. Hay. But the bonus is this: after everything that I went through, my faith grew more and more. There’s nothing like back-to-back(-to-back-to-back) problems to really prove to anyone that there is one and only one God that you can count on in any situation. Rick Warren said it so perfectly in A Purpose Driven Life (reiterated in the devotional series, Leave a Lasting Legacy): “You never know God is all you need, until God is all you have.”
Being sick can be incredibly frustrating at times, especially when I am reminded of the things that I have to forgo for the time being. I can’t go out and drive by myself anymore (I don’t drive at all nowadays, for safety’s sake); I haven’t tried swimming on my own, although it’s partly because I haven’t had the chance to; I miss yoga, which I really enjoyed before I got sick; going out of the house has to be well-planned, even for minor errands; most days, I have to budget my energy (based on my current dose of steroids) and rank physically draining tasks according to their level priority; my Things-to-Do list became a Want-to-Do list end eventually, What-Would-You-Have-Me-Do-Today? list.
I’m still working on surrendering my tasks, decisions and overall day to Abba and it gives me peace acknowledging that Someone greater is in complete control. It’s easier to let unfinished chores slide and complete them another day. After all, if it were truly important, as in with-eternal-consequences level of importance, I’m sure God would have orchestrated something to MAKE it happen. How sure am I of this? Simply put, He has a really long (thousands of years long) track record of His faithfulness – The Bible. That’s why I keep reading it. I want to know Him more and more. I want to keep holding on to His promises. I want His voice inside my heart at all times, to harness my emotions, and to guide my thoughts, words and actions. Life has never been more complicated, but in all honesty, I also have never been happier.
Each night, I go to bed with a feeling of fulfillment, knowing that each day counted for something. Along with my newly discovered disabilities, I also found my voice. I found that the only way to make sense of all this is to try and look at the situation with God’s eternal perspective in mind, get over my all too human emotions of frustration and embarrassment, and write about things that demonstrate Abba’s mighty hand in the chain of events that led me to Him. And my goal is to reach as many people who need this kind of freedom and love and peace that only Jesus has been able to provide me with. Abba is omniscient and omnipresent… there is more than enough of Him for each and every person in the world. It would be a shame (and it feels like a crime) to want to keep Him and the good news of His saving grace all to myself for trivial reasons like wanting to protect my pride or being uncomfortable with disclosure. After having cataplexed in various situations, I don’t have that much pride left anyway, just mostly humor. 🙂
1God is our refuge and strength, an ever-present help in trouble. 2Therefore we will not fear, though the earth give way and the mountains fall into the heart of the sea, 3though its waters roar and foam and the mountains quake with their surging. – Psalm 46: 1-3 (NIV)