Thursday, February 13, 2014

Hypo Kalemic Huh?

That's what I usually get when trying to have this tough conversation with people.  It is usually accompanied with an extremely confused and puzzled look because up till now, my wall has been up, and I'm just like every other person - not a weak muscle in my body.  And the very reason I usually have this conversation is because I've reached a point where I can't keep up that wall any more... because it's crumbling. Today the reason is different.

Before I proceed further, let me take a moment to give you the Wikipedia version of what this is that I was diagnosed with a couple years ago.

Defined:  Hypokalemic periodic paralysis is a rare, autosomal dominant channelopathy characterized by muscle weakness or paralysis with a matching fall in potassium levels in the blood (primarily due to defect in a voltage-gated calcium channel). In individuals with this mutation, attacks often begin in adolescence and are triggered by strenuous exercise followed by rest, high carbohydrate meals, meals with high sodium content, sudden changes in temperature, and even excitement, noise or flashing lights. Weakness may be mild and limited to certain muscle groups, or more severe full body paralysis. Attacks may last for a few hours or persist for several days. Recovery is usually sudden when it occurs, due to release of potassium from swollen muscles as they recover. Some patients may fall into an abortive attack or develop chronic muscle weakness later in life.

My version:  Keeping it simple, there are certain triggers (heat, cold, high carbs, strenuous activity, stress, etc.)... you know, parts of every day life... that cause these "attacks."  Attacks for me vary in kinds as well as severity.  One, all the muscles in my body cramp up, and I look like I'm having a seizure (imagine a spider balled up once water is sprayed on it).  Two, all my muscles loose strength, and I can't move a muscle (imagine a dead person).  Both of these attacks generally include not being able to speak (literally), unable to move, extreme emotions, exhaustion, and difficulty breathing.  These attacks are varied and usually occur very unexpectedly.

Chances are, you haven't seen me like this.  Somehow, I am usually able to keep it in until I can let it go (Thus the reason I may disappear at an event).  Chances are, you don't understand.  That's understandable.  Only 1 out of 100,000 people are diagnosed with this.

Two out of four in my family have been blessed enough to be diagnosed and are now on medicine to help prevent having as many attacks.

Why am I writing about this?  Because I need to - for myself and for others with HKPP. There are those out there who have this disabling diagnosis and yet others who have yet to be diagnosed, but it is real, and it is written about so little.  My doctor sees maybe 1 patient a year with this.

It can be difficult to live with this.  Reasons are varied.

1)  People don't get it - you seem normal most of the time, so you should be normal all the time.  Maybe 10% believe I actually have a legit health problem.  But I guarantee that if they would see someone with an attack, they would want to dial 911 in a heartbeat.  No need.  We live this most of our lives.  We know it will eventually pass.  It's something we hide.  It's something we don't talk about.  Because we wish it weren't true.  And most of the time we try to fool ourselves into thinking its not.

2)  We are young. We're full of life and dreams and for those of us who are Christians, we want to be ALL OUT for God! Besides, isn't the mark of a true servant of God faithfulness? But there are certain limitations, and we just can't push ourselves past them, otherwise we WILL be flat on the couch, unable to take a step, and fighting for our next breath.  There are just sometimes when we can't be "faithful" to do everything that everyone (ourselves included) thinks we should do.

This is something I have faught with ever since I started having problems two years into college.  I want to be more, do more! -- And people expect it too! It's hard for me to understand why God would allow this in my life when my desire is to serve Him.

But just the other day, the sweet Holy Spirit revealed something to me as I was praying over this for the billionth time.  He whispered to me the words of the verse in Corinthians... the words that He whispered to me years ago when I sensed I wanted to do something special for Him.

"I have chosen the weak things."

And so, I'm breaking down the wall.  I'm going to be honest with myself and with others about the lot God has allowed me to have in life.  And I'm going to cling to this verse, letting God use what He has chosen as HE sees fit.


  1. I'm so glad that you wrote this, Anna. I pray that it brings a healing within you, as well as others who might have this or some other type of disease that they are dealing with. I'm not sure if you knew or not, but I was diagnosed with Rheumatoid Disease two years ago. I really knew very little about it, as do most people. They just assume that it is another word for arthritis that old people get. I did massive research on it and educated myself. I have been through several high risk drugs and infusions and still the disease is active. Everyone says, "but you look good - you don't look sick". But, I rarely feel "good". So, I understand a little about the frustration and the lack of understanding/education of an uncommon disease. Yours is extremely rare, so I'm sure it is even less understood - perhaps even by most doctors. I have my low points and rarely even want to leave the house because it is so painful sometimes.(especially in this frigid/snowy weather). But, we have let people know in congregations when we go out to sing. So many have come up to me afterwards and told me that they would be praying for me; that they have had RA and we can talk about it and the meds that we are on. I believe God has used it to help others as well as it has helped me to talk to others who actually know this disease. There are support groups on fb too that are helpful. I hope you can find something like this. Having a rare disease is hard enough, but trying to talk to someone about it who has no idea what you're dealing with can be a little disheartening sometimes. I want you to know that I will put you on my prayer list and I hope that this begins a great healing in your soul. God hears and knows our hearts desires. He will be there for us even in the deepest, lowest valleys. Would be happy to talk anytime. Love & prayers! Patti Duvall

  2. Anna, thank you for sharing such a personal thing. Letting others in on this, allows us to pray specifically for you. Love & miss you & Mikey
    Darlene Roland

  3. I don't have the same thing you do, but I know what it's like to look and feel crazy because your body begins to do things that "normal" bodies don't do and when you have such a list of things you'd like to accomplish, but are only able to do a few due to how you feel. I know when I have done too much because, like you said, I end up couch ridden until I "come out of it". The only thing that keeps me from utter discouragement is Christ and His grace. I have to remind myself daily of the fact that I am weak, but my weakness allows Christ to be strong in me and it brings Him glory. I pray daily for strength. I know God wants me to be a missionary in a foreign field eventually, but to be honest, I don't know how He's going to do that when I struggle at just getting the simple things of life done, but faithful is He Who calls Who also will do it. We just have to cling to God and His strength. I'm so thankful for an understanding husband who knows when I need help and isn't afraid to do "women's work". Praying for you. You aren't alone in being weak and needy.

  4. Dearest Greer.(sorry you'll always be that)
    I am proud of You. I also know what your spells are like. I was wondering the other day how you were doing health wise. I'm glad they have figured out what it is. Hope you are doing well.