My Story...

Which story am I talking about, you might ask?  My book?  My life’s story?

Neither.

The story I am going to tell today is actually a highly personal story.  It’s one which I have been asked to share over and over and over again, and yet, it is a little known story.  At least in its fullness.

The story I am going to share today in my PRP story.

Now, if you don’t know me very well, I’m sure you’re thought is, “Your what?”.   And if you do know me well then you know what PRP is, but you probably don’t know the story. 

Why do so few people know about it, you might ask?  Well, quite simply because if you weren’t around during that time in my life, I don’t really like to bring it up.  I guess because to me it could come off as attention seeking, and that is the last thing I want.  So, up until now, I have only shared the story with close friends and people who the Lord laid on my heart to share my testimony with.

So, you may be asking, why am I going to share this story so publicly now, when I have been opposed to doing so in the past?  Well… because I’m finally ready to let go and let God, in essence.  I’m willing to allow myself to be vulnerable with the knowledge that trusting what the Lord has called me to do is what is right.  So even though it is hard to open myself up to the criticism of others during a time when I was emotionally struggling… it’s a step of faith.  The Lord said it was finally time to do what I have been asked to do since the beginning of my condition.  Share my story with the world.  

The story actually starts the day before my 16th birthday; I was grocery shopping with my mom. As the day progressed, she noticed faint little red bumps forming on my face, especially around my eyelids, which were somewhat inflamed looking. The red bumps were not really visible unless you looked closely, but the skin right around my eyes was red, making them very prominent.  They hurt.  Not really my eyes, but rather, the inner skin of my eyes.

I started feeling really drained that day.  I mean drained.  I’ve never felt so weary before or since.  I figured I’d just sleep it off.  Probably some weird something or another I encountered in the barn (retired military brat turned farm girl, so I had plenty of exposure to alfalfa and so forth).  Sleep didn’t help, though.  It evaded me.  I was asleep, but I had no rest.  I tossed, turned, and moaned most of the night.  When I finally woke up, I was in severe pain and my heart was racing.  It was dark, sure, but something else was wrong.  I couldn’t see anything, and my eyes were burning.  It didn’t take long for me to realize what was going on.  My eyes were fusing shut.  Thick mucus was coating my vision.  I later learned this was providential and a form of self preservation that would save my vision over the next 2 years.  

My face and hands were on fire; they burned and itched simultaneously.  I don’t cry, as a general rule, but my cheeks were moist as my mom rushed me into the ER at 2 a.m.  Daddy stayed home with the boys and our new baby girl, praying for me.  The Dr.’s wouldn’t touch me.  They had never seen anything like it.  Was it contagious? They had no idea and they had no desire to figure it out because they were concerned about “catching” it themselves. I was given a steroid eye lubricator (only because my mom insisted they give me something to try and relieve the pain in my eyes) and spent the morning in the hospital.  Certainly not how I planned on spending my “sweet 16”.  They released me with no answers.

So that was the start.  Over the next two weeks my life drastically changed. I spiraled out of control physically. Suddenly my skin began to turn lobster red (I am not joking!  I looked like a burn victim), and my skin thickened.  Then, on top of all of that, my skin also started scaling.  I was having dead cell buildup and what is called “plaques” growing all over my body. These changes to my skin began to restrict my movement.  By the end of my first month I could no longer care for myself because of the pain and the immovability of my limbs.  The skin was so taught from my swelling limbs that movement was inhibited.  When I walked, it was with a slow shuffle. 

Since my family believes in a wholistic and natural approach to medicine, I sought help from our family Dr. and friend, who is a Chiropractor.  However, Dr. Frisch is much more than a Chiropractor.  He believes that God created our bodies to be very intricate.  He uses herbs, essential oils, and homeopathic remedies in his practice, and his wife practices electro therapy.  Frisch worked with me for about 4 weeks, supporting my system as best he could, but in the end, he told me that God had a place for modern medicine (which I believe wholeheartedly), and this was one of them.  Not only was my body out of control, but he and his wife were very distressed because the electrical impulses in my body would not register on the machine.  They tested it on several people, including themselves, hoping it was simply broken.  The fact that the electric impulses in my body were nonexistent “technically” meant I was dead.  However, this was another blessing in disguise, I learned later.  It meant my body was essentially shutting down because my system could not handle the pain.

So I went to see a dermatologist.  He had absolutely no bedside manner. In essence, he told me the situation looked hopeless, my condition (whatever it was) was out of control, and I would most likely be stuck with this forever. 

I’m sorry, but that was the wrong answer. 

If God wanted me to have this affliction the rest of my life, that was one thing, but no Dr. was going to tell me to “give up and live with it”.  Just not part of my personality.  Period.  So he referred me to the Psoriasis clinic in St. Louis, a clinic that would not see me for four weeks.  We were told “schedule an appointment, we are booked”.  My Mom spent an hour on the phone, insisting they see me.  She even told them “listen, I’m not some crazed mother telling you my child is bad.  I’m telling you, IT’S BAD!”  The conversation got her nowhere.  My Aunt (an OB nurse) wanted to march me up to the hospital and sit me in their waiting room, refusing to leave until they saw me.  I don’t like Dr’s offices at all, or Drs for that matter, so I wasn’t prepared to do that.  I forced my family and friends to respect my decision against their better judgement.  They watched in agony as I began to become unrecognizable and lived in constant pain.  Was it a smart move?  Maybe not.  But emotionally I wasn’t in the place to go march up there and throw a temper tantrum.

When I did go to the hospital they wished they had listened to my mom.  In fact, a Dr told my mom she should have stressed the urgency of my situation.  “I did, you just wouldn’t listen,” was her basic reply.  The Drs and nurses had never seen a patient like me before. They paraded somewhere around 8 Drs and 10 medical students through my room to examine me.  I have to tell you, this didn’t increase my like for Drs.  None of them knew what was going on. I had two biopsies (which I thought was a fascinating process once I was able to ask my Daddy what they did later on that day), 4 shots, and 9 blood sticks occurred that day.  They took skin samplings and sent them off to the lab.  The multiple blood sticks were because they could not find my veins.  By this time my arms were almost pinned to my chest because my skin was drawn so tight.  They had to pry my arms down and search for the veins under my thickened skin.  The end result was that I was sent home without them getting my blood.  My mom finally said I was done.  It was impossible to find the veins and they had already done 9 educated blind sticks.  By this time I was crying.  I don’t remember what I said, but I was apparently begging my parents not to let them do anything else to me.  It was decided that they didn’t need my blood samples that badly, they would bring me back in on Monday to try again.  It was one of the most traumatic days in my parent’s lives.  They were not accustomed to this side of their girl.   

The outcome of all of that?  When the test results came back I was diagnosed with P.R.P (pityriasis rubra pylaris), a very rare skin condition that has had very little clinical testing or documentation.  It is an “orphaned” condition, so they call it.  Basically it is so rare that it is not worth research, so those of us with it are scrunched.  Also, in us lucky rare few the condition shows up in people 60 and over.  Why a 16 year old had it, they have no clue.  How to treat it?  They aren’t sure of that, either.  There have been no studies or tests, and the condition is so erratic that it can vary in severity from person to person.  Treatment is based off of the individual.  Oh, and one more thing, Ma’am..  It is so aggressive and controlling we aren’t sure you will ever get rid of it. The Doctors also informed me the few pictures of my condition were nothing like me.  I had it bad.  So bad, in fact, that by the end of three months I was clinically diagnosed as 100% covered.

So for the next four months I lived in a glorified trash bag (some horrible plastic suit that should not be a legalized product to sell, in my opinion) with constant steroid ointments slathered all over my body. At the end of the four months I removed myself (against medical recommendation) from the steroids became my skin was so veiny and thin I was beginning to bleed if you touched me (because the steroids thin your skin). I dealt with some severe swelling at one point (my knees, legs, ankles, and feet were all the same size)and I could rarely sleep because of the pain I was in. That was really hard.  When everyone else was asleep I’d be wide awake and on my own.

So.  Drug options.  Thrilling.  I began to go through them.  I was not thrilled.  For someone who was never sick, took no medication, and hadn’t been to a traditional Dr. in 6 years, I was stressed.  The Drs were not thrilled with my “uncooperative nature”, either.  It wasn’t that I was trying to be difficult, but I had a life I planned to live.  I was 16.  They were not going to just demolish my system.

There were two drugs they thought would be very helpful, but I flatly refused. Soritain (spelling?) was the first one.  It is the only drug they had any documentation (at that time) on that improved the PRP at all. In spite of its so called “effectiveness” I declined the drug because of the five year sterility (five years beginning after your last dose) that this drug causes.  What are the long term effects?  They don’t know.  It is mostly used on the elderly.  I was 16! There was a good possibility that if the Lord healed me I could be married in five years! That put me at 21 from that date. Consequently, I was 18 before my healing occurred, so that would have bumped my age back to 23-25 range, depending on my last does. I wasn’t willing to risk my fertility to be healed. I didn’t believe that was His plans and purposes, so I declined. That created a big stink among some of my acquaintances.  Why would I care about kids I don’t have?

The next lovely drug they wanted me to take was Acutaine (spelling?). Typically used for acne. However, this wonderful man made creation can have some schizophrenia side effects, coupled with suicidal tendencies. I actually knew a girl who was on the drug (a strong Christian) who began to have suicidal tendencies and yanked herself off the drug.  I didn’t want a drug that was going to mess with my mind. I also was not happy with the fact that they would force me to use two different types of birth control (a monthly and a daily at the same time) while on the drug, as well as subject myself to monthly pregnancy tests.  My Doctor was appalled they thought my body could even handle that!  

I had a few people who had the audacity to tell me it was my fault I wasn’t getting better because I wasn’t doing whatever the Dr.’s told me to do in order to get better. I found this rather ironic.  Wasn’t God the Ultimate Physician?  If I was praying and following His leading, then was it my fault.  That made God seem kind of small, didn’t it?  No way, I wasn’t buying it. Besides, it was my life.  I was going to be in control of it (with parent support, of course) to the end.  No one was going to force a drug on me that undermined everything I believed.

During all of this I was also stripped of the things that most girls find their identity in. In addition to losing the hair on my head (twice.  I decided bald is not a great look on me), I also lost my nails completely, my eyelashes, and my eyebrows.  I had thick plaques all over my scalp. I shed worse than a dog!  I constantly sluffed skin as I walked.  You could literally see a trail.  It’s rather gross to recount. I was also somewhat like a snake, too. I would shed bands of skin off every day (really weird!).  Sometimes I would bleed really bad when this happened.  Other times this just exposed tender skin.

Sorry to give you so much physical info, but that (brief) overview was necessary in order for me to show you the beauty of what the Lord did in my life.  I don’t want to end with giving you this long list of physical afflictions.  I came to understand that God gave me a gift.  One not many people get to experience.

First of all, this condition isn’t only physical; it is very emotional as well. I remember the times I was able to make it out of the house.  One of the things my wise parents did not want me to do was sit at home and feel sorry for myself.  So I went to church every Sunday, in spite of the pain.  I made it out for family excursions, when I could.  But there was a side effect when I left the comfort of friends and family.  People would inevitably stare and whisper behind my back.  And they weren’t good at hiding their reactions from me.  I also had people who claimed to be my friends (they were more young people my family and I ministered to) refuse to visit me because I was unsightly.  They treated me like I was contagious (the established fact was that I was not). The fact that I no longer looked the same somehow changed who I was in their minds. There were even some who said this affliction was due to unconfessed sin in my life.  This creates emotional struggles, obviously, no matter how much we frail humans try to trust in the Lord.

But the Lord was so gracious! His mercies were new every day. I prayed daily for the Lord to lead me as I ministered to others. Over my two years of battling this condition the Lord brought me through difficulty after difficulty.  He sustained me and brought me through tremendous spiritual growth. However, at first, I went through a spiritual crisis.  I was no angle.  For the first five days after my initial hospital visit I rebelled full throttle. I was angry and bitter. I struggled with depression and frustration. Questions of “why God!” were not uncommon.  I had to come to terms with one very real question that is thrown around by popular culture. Would I be able to walk the walk when push came to shove and the rubber hit the road? Would my faith stand?

Vanity and pride were two of my greatest flaws at this point in my life. I think it is for most girls. I retaliated in bitterness as Christ hit those two flaws very hard, stripping me of both. My parents had to feed me, dress me, help me go to the bathroom, and any other thing I needed. My appearance was ghastly! This resentment I went through wasn’t only hurtful to me, but also my family. But we serve a mighty and awesome God who would not leave me in my self-pitying sin forever. Hebrews 12 says ‘For those He loves He also chastens, and scourges every son whom He receives. If you endure chastening, God deals with you as with sons; for what son is there whom a father does not chasten? But if you are without chastening, of which all have become partakers, then you are illegitimate, and not a son.’ This was the first truth I had to learn. I was brought to my knees as the creation, having no right to question my Creator, and my loving Father.

God’s justice was mixed with mercy.  Instead of striking me down, He brought me into His arms and comforted me, bringing peace to my soul. His timing was perfect, because the physical pain of my condition intensified drastically after that point.  Christ was always there, carefully orchestrating that when I was at the point of crying out ‘Lord I can’t do this anymore!’ He would cause me to lean further on Him and brought about some event to help me through the pain.

I remember my Mom saying I recited, in a litany of speech, the Lord’s attributes one time when my pain was at its worst. I don’t really remember that because often times when my pain would get to that overwhelming point I didn’t know what was going on.  My mind kind of blacked the whole experience out.  I was desperately trying to focus on not letting the pain overcome me (suicide is very high in my condition). But it was comforting to know that was how I would handle the situation, even if I never remember it.

Perhaps one of the most profound truths I learned was during my turning point from bitterness to acceptance. I was put on prednisone while I underwent my anger and frustration. Because of the dosage they put me on I became nauseous, visibly shaky, and had a pounding headache. I pleaded with the Lord as I lay there to take something away. I couldn’t handle it all.  I wasn’t going to make it; I needed some sort of relief. Instead, the Lord brought a verse to mind. It was Mathew 7:9-11, which says ‘For what man among you who, when your son asks for bread you give him a stone. Or if he asks for bread you give him a serpent? If you then, being evil know how to give good gifts to your children, how much more will your Father in Heaven give you good things?’

That’s when I realized a profound truth that I have carried with me.  My Daddy is amazing!  I’ve always been a “daddy’s girl”, ever since birth.  Though he is human, he is an amazing human.  Now, with this knowledge, I began to ponder this verse. If my earthly father loved and cared for me so much he would never give me a snake or a stone, how much more my Heavenly Father? The Father gives only good gifts. This trial was not a stone.  It was a good gift. I wept over my sin of rebellion towards my Maker who had always been so faithful, and embraced whatever it was He was trying to give me in this trial. He showed me He was still my God, He was still good, and He still loved me.  No matter the circumstance or how it appeared.

As a young woman I learned many things. Let’s face it, the first thing culture looks at is our outward appearance. Mine had drastically changed. People judge you by how attractive you are long before you open your mouth. Suddenly my thoughts were no longer valuable to some because my external appearance had been altered. My mind was still the same, I still had the same hopes, dreams, aspirations in life, but I was no longer a 16 year old full of life and vitality. All the truly beautiful things about me were the same, but that didn’t matter to many people.

I blush when I share this story.  I think of the vanity and the pride and how concerned I was with my red skin and bald head… but I think this part of the story is valuable to tell from time to time, so I swallow my pride and tell it anyways...

As I said, during all of this I lost all my hair. I was devastated when this first started happening. I mean, at first I was in denial, but it came to a point where I could no longer delude myself and I had to face reality when handfuls of hair were falling out and I was getting bald patches. I had to face what it would be like to start growing inch long stubble all over my scalp if my hair was even capable of growing back (which was a concern the Dr.’s had). I realized I found identity in my long hair.

When I realized how important my hair was to me, and that I put so much worth in it, I was disgusted with myself for letting society dictate to me what gave me value! My soul was not in my hair; my heart and my mind were not in my hair. If I lost it, I was still whole. I might never look the same again, but I would still be me.

Through it all I learned to focus on myself less. I don’t want to make this sound easy; I didn’t come to grips with all of this stuff overnight.  I had two years to trust and grow.  I eventually decided to let my life be a living sacrifice for Christ and to let Him change me through this process. Don’t get me wrong, I prayed EVERY SINGLE DAY for the Lord to miraculously heal me. I begged Him to remove this from my life!  I didn’t want to go through this.  I wanted my hair back, my long lashes, my complexion… but I recognized He isn’t arbitrary and has a purpose in everything, even if He decided to let me live life like this forever.

However, my hair wasn’t my biggest struggle emotionally.  My future life was.  I’m not the typical teen girl. Never have been. I wanted 12 kids (not literally, I’d be happy with anything, but I like the shock value of saying I want 12 kids) before the Duggards became popular. So when I received my affliction at 16, I was devastated. What would this do to my plans? Being in my condition I knew I couldn’t pursue the desire to be a wife and mother. I couldn’t even take care of myself, let along the other complications. It was a deep wound that never really healed. The Lord never took that desire away. He only told me to trust Him. That was so much easier to hear than put into play. I suppose one of the harder things about my dreams being taken from me was that they were godly desires that the Lord had given me in the first place! He’s the one who took away the radical feminism (used to be a flaming feminist, once upon a time)and created these desires and thought processes. I think in the end I had come to love these things too much. I was striving more towards them instead of more towards Him.

Even after being healed I still struggle with some of these concerns. The Dr.’s don’t know anything about my condition, so to speak, so they aren’t sure if it can genetically be passed down to a child. That kills me. How could I watch my child undergo that? Daddy and I have talked about it over the years. We believe that whoever the young man is that I will eventually marry, he needs to be well educated and informed on my PRP before we decide to get married. If he wasn’t around or didn’t know about it, he would virtually have no idea, since my previous condition doesn’t come up in normal conversation and I’m so fully healed there are no physical reminders of my affliction. Well, at least not that most people would recognize.  My hair grew in curly and so forth, but no one would know I had straight hair before.  My husband will need to be prepared that I could technically flare back up again, or I could pass this down to his children.

Some people have told me that I should give up the desires for children. Getting married is okay in their mind, but children?  Big no. I don’t believe that is true. I don’t think I should avoid having children because medicine is uncertain. If it were up to medicine I might be unable to have children based on the drugs they wanted me to take. I believe in an all sufficient God who knows every hair on my head and every child He will gift me with. I am not God. If He doesn’t want me to have children, He won’t give them to me. If He does want me to have children, He’ll give them to me. And if He decides to inflict my child with this condition then it was His decision and not mine. He will give the grace for those days of heart ache. The bible says His grace is sufficient. It also says He gives grace for today, not tomorrow. So while it is unfathomable to me at this present time, I know He will uphold me if that is part of His plan for my life, or the life of my child.  And maybe, it might not be.  Medicine has no clue.

This was the hardest dream to give back to God. My future centered around that. I want to be a stay at home Mom. I’m not ashamed of it. I don’t think there is anything more beautiful than a mother who is there for her children every step of life and a wife who works alongside and with her husband. I’ve heard ALL the arguments. I’ve been verbally attacked by people. I’ve heard the selfish reasons why I, as a “talented” (talent is in the eye of the beholder) writer and artist should not tie myself to the home like that. But all those arguments crumble and they all fade away. What is more God glorifying than investing yourself in a spiritual being?  I’m not talking about doing nothing. Women should be educated. I believe there are still lots of my passions that I can pursue while being a home maker. I’m not one of those “lose your identity in your kids” kind of people. I do interior decorating type stuff. I don’t need a degree for people to see I’m good at it and have me come paint pictures on their walls and design their homes. People can look at my nursery paintings and say “who cares if she majored in this, I want her to do my home’. I can write from home. I can still minister to all the people I do from my home. I’m not losing anything; I’m gaining shining souls who will follow me along all my journeys. 

I can’t tell you how many people the Lord impacted through my situation.  I don’t really know, but I was able to go into the hospital and give the gospel to people. It was never easy, but I learned an amazing lesson.  The Lord will never leave us, nor forsake us. I am now able to speak into the lives of so many girls I could never have ministered to, including young women undergoing cancer.  It’s amazing how much telling a young girl who is losing her hair “I know exactly how you feel” blesses her.  Someone understands. The Lord also gave me sensitivity towards others I didn’t have before.  He softened me.

It was a long process to get here, but I am now fully recovered and healed of my affliction, although PRP is always in “remission” and supposedly never really out of your system.  I keep my abdominal injects in my fridge, just in case I have a flair up.  I can’t maintain my body temperature well, so I wear lots of leggings, arm warmers, and so forth to try and help with that.  But I am so blessed in how well I have healed. 

There is a lot more to the story, I am sure, but that is probably plenty.  I will not apologies for the length of the post.  My story cannot be told in a simple two paragraph statement.  The Lord deserves a lot more credit than that.  And I hope that He was given it today in my post, because getting on the other side my PRP was totally God.