This won’t always be your life

brighter days will come
Brighter days will come. I drew this with that thought in mind.

I walked into the doctor’s office, my knees ached and my joints stiff. My neck hurt when I turned it and even though I had taken a hot bath to help ease the stiffness in my body, I felt like a board walking. But I went anyway. I hadn’t seen a primary physician in over a year and I knew I needed to get my thyroid levels checked since I have hypothyroidism. As I stared down at the tiles in the room, I thought about my blog and writing about the past and how far I had come, even so I still had such a long way to go. All of the encouragement that I had received from others, now that I was being obedient to my calling and writing, had supported me thus far in getting out of the house. My body was in more pain than ever and there still isn’t a lot that I can do. Writing and doing art and music were starting to make me feel alive again, if I could just write something every single day, I felt so accomplished.

When the doctor came in the room, he rushed straight to my arms, like they always do. He poked and prodded at my arm. “You lose a lot of weight?” he asked, examining my stretch marks.

“I lost 100 pounds, but the stretch marks were from the steroids,” I replied, used to being handled randomly by doctors in awe of a disease they had never heard about.

He apologized and introduced himself and sat down in a chair spinning it around and facing me. He asked me what I wanted to do with my life and I was immediately thrown off. I was used to doctors quizzing me for at least a half an hour about the pemphigus. I told him I had lost a lot of jobs, and my plans for what I thought to be a successful life hadn’t worked out, but I was writing now, which I loved. Fiction, and about the pemphigus.

“That must really mess with your Id and Ego, losing jobs a lot like that.”

I looked down and away, I felt the tears pricking my eyes. Even though I had already decided that I wasn’t the job, that I was so much more than doing things like “normal” people. That I was still me. It still hurts me to think of losing my culinary career before it could even begin. And it was such a rare event when, instead of suggesting other jobs for me to do, people simply acknowledge that it was hard. It was just hard losing so many jobs like that to pemphigus.

He stared at me silent until I looked up, and then into my eyes. For some reason, I couldn’t break the connection between us. He told me his sister’s story about her struggle with Lupus and how it had ruined her life too, how the pain had kept her from having a normal life and destroyed everything she held dear. He told me how he understand how I could feel like this would be the rest of my life, but it wasn’t. His sister was now the healthiest person that he knew and the lupus was gone entirely, now she had held a job for 20 years straight after losing jobs back to back like I had. She was just like me, but now, though she still didn’t have her immune system, she was living a normal pain free life.

“Right now, you might think this is the rest of your life,” he said. “But it’s not going to be.”

I held back so many tears that burned my eyes and I blinked really fast, because I know that once I open the floodgate of tears it doesn’t stop for a long time. But later on, I cried. Hearing such an inspirational story of someone else who dealt with such a rough autoimmune disease, who was now healthy? On no medication and living her life to the fullest? I could only cry because I knew that one day, that was going to be my story. One day, I’m going to be so healthy that people will be in such shock that I had ever dealt with an ugly disease like pemphigus. One day, I will be able to leap out of bed instead of lying there stiff and in pain for hours before I could get up. One day, I will be able to walk around all day with no pain, I will be able to run freely. Maybe even a marathon!

One day, I’m going to be healthier then I have ever been. That simple story from what I thought would be another getting to know a new doctor while they learned about a disease they had never heard of, turned into a doctor who was kind enough to not only see my pain and acknowledge it, but to give me encouragement for a brighter day.

And so I pass it on to you, you may feel like it, but this will not always be your life. Maybe you’re going through pain and struggles and you can’t figure out how it’s going to work out, that’s okay, that’s absolutely fine. I don’t know how mine is going to work out either, but I know that it will work out. My everyday life is gratefulness, even when the negativity creeps into my mind and tells me that I am not enough. It tells me to be silent, but I will speak. And eventually, I will fly.

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Circle Prayers: Praying the Impossible

Do you believe in miracles? I do. Sometimes I look back and realize how much of a miracle every day is. My life isn’t perfect, but my days are happy and blessed. Last year, I went a year without health insurance. I was struggling all year to get on a plan and once I lost my job it made it even harder and I was in an endless loop of being tossed from one place to another without any final answers. Of course, my health issues still went on during that time and I stacked up quite a LOT of medical bills. I worked hard calling around, filling out paperwork, letting people know that I just couldn’t afford these things. And I was pleased that I got many of them taken care of, I felt accomplished even.

But somehow, they saved the really huge ones for this year. I got an emergency bill that was $994 dollars and absolutely freaked out. When I picked myself back up from the floor, I realized all I could do was pray about this one, and I did. And God provided for me miraculously and took care of it. I was a little shocked, even though I was the one who had asked him to provide. There was always the tiniest little bit of doubt.

Although I laugh at the Israelites in the Bible for constantly forgetting what God is capable of, how he saved them from Egypt, how he parted the red sea, how he constantly provided for them in the desert. They always doubted their survival, they just… forgot. And oftentimes I find that if I’m not in a constant state of gratefulness, that I tend to forget how much God has already done for me in my life. Realizing that in the moment, I felt ashamed to have doubted him.

Then, bam, the biggest bill I had ever received came and knocked me out again. $35,964.93. I just… I can’t. I was horrified, and quickly all of the miracles that had happened flew from my mind. All I could see was the harsh reality in front of me, I forgot who I was, I forgot who God is. All I knew was that I was in deep trouble and I started flailing around, I had to get a job. Never mind that it would probably land me in the hospital again, I had to handle this.

And it was then I heard the still small voice that I often ignore or yell over in my hurry.

Rest.

It was so quiet that I almost thought I hadn’t heard it, that I could almost ignore it. But I couldn’t ignore the peace that settled into my soul.

Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. – Philippians 4:6 NIV

Honestly, I used to be anxious about everything. I always viewed prayer as the last resort when other things didn’t work out. I carefully delegated small tasks to God, things that I knew would work out okay, because then, there was nothing to lose if it didn’t right? Or if he said to wait, or if he said no. Or maybe if I just wasn’t worthy enough, but I am his child.

2015-03-27 15.37.13One of the great books I picked up from Re:Write is called The Circle Maker by Mark Batterson, in his book he talks about prayer in a way that I’ve never prayed before. Focused, intensive, faith filled prayers. I started up a prayer board, I took one of my craft boards and started asking people what they needed me to pray for, already many of those prayers have been answered in miraculous ways. So I thought to myself, why am I holding back? What is so scary about the impossible prayers?

Since these things are written down, I worry about looking like a fool praying for the biggest most impossible things. (Although that’s never stopped me from singing and dancing through grocery stores). I worry that it is too demanding of God, although God himself is so infinite that $35,964 dollars is nothing to him. And so, I buckle down and I pray. I’m going to add any and all bills to the back of my prayer board and circle them in prayer as well.

Every morning, as part of a group challenge from church, I’ve been spending quiet time with God, before I even get out of bed. I thank him for all that he’s done so far and I pray for anyone who he brings up while I’m in that moment. It has literally changed my life. The more time I spend praying and reading my word, the more that I realize, he is an impossible God. He serves out miracles left and right, all we have to do is have faith and ask. To step boldly up to the throne of grace. There is nothing you can ask of God that is too much, if he answers in a way you don’t think or even says no, it’s okay. He still heard you and he has something even better in store for you. All we are called to do is trust and simply ask.

Let me know if any of you have “impossible” prayers! It doesn’t have to be money related, it could be health issues, relationships, a job, a challenge in your life, anything! And if you would like me to pray for you, just tell me in the comments and I would be more than happy to add you to my prayer board as well.

Pemphigus Vulgaris: Part 4 Where I am now

If you haven’t read the first three parts, please read them first here: Part 1, Part 2, Part 3.

Pain isn't always visible!
Pain isn’t always visible!

I’ve now shared with you how it all began, and what pemphigus is. To wrap things up, I want to talk about present day, where I am now over six and a half years later. Most people would assume my darkest days were the beginning, where they could see my issues, they would be wrong. Even then I was full of hope, I kept thinking maybe tomorrow, maybe next week, maybe next month, as suddenly as the pemphigus had come it would leave. Over the years instead, the pain has persisted. Day after day, until I think I can’t take another day of pain, but somehow, I do.

Thanks to two chemotherapy treatments I received in 2013, I’m off of immunosuppressant’s in exchange for killing off my antibodies. The pemphigus however, is still on my scalp where people can’t see it, there are various hard plates on my head that can be painful. From the neck down, my body aches and stiffens filled with pain. My rheumatologist told me recently that she believes it’s myalgia along with the pemphigus, since I already have an autoimmune disease my body just kept on attacking itself and caused many other issues over the years. I can’t walk, or stand for long periods of time, before the pain goes from bad to excruciating. Even as I write this, I can feel the pain in my fingers and I’ve learned daily it’s only a matter of time before they begin to cramp up from writing. But still I write.

I would say my darkest days were not the beginning, but rather my darkest days were the past 8 months, between losing my last job and being more invisible than ever.

Let me tell you something about chronic pain and chronic illness, people forget. They will forget you have pain because “you don’t look sick” or just because it has been years since the first diagnosis. Not only will they forget, they will also disappear. And when they do reappear, they will make really stupid comments that will be hurtful and cut into your soul, even now the insensitivity of those people who I would assume should know better because they were “close” to me, pains me deeply.

If I could keep a job, I would love to be working right now.

I’m not sitting at home because I’m just living the dream, I’m really not. When I wake up in the mornings oftentimes I cry from the pain. The worst time is the mornings and at night when my entire body is full of pain and so stiff I can barely move. Both of my doctors have told me work is not a good idea right now, and for once I’m ready to listen.

I’ve pushed myself back to work twice while my body was in pain, and twice the repercussions of those actions emotionally and physically broke me down lower than I could bear. Still, I felt I wasn’t good enough because I’m 26 years old with two degrees but no career to speak of. I believed the lies that others whispered into my life that I need a job and a steady paycheck, that somehow if you’re not chasing the American Dream, no matter if you have illnesses that prevent you from doing so, that you are not good enough. That you are suddenly nothing but a burden.

And when you start to believe those lies, that’s when the darkness settles in and thoughts of suicide run rampant.

I refuse to hurt myself anymore just to prove myself to anyone, just to make some money. Where is all the money from before? I barely made any, I have nothing to show for those times except pain. NOTHING is worth the cost of your health. And by believing those lies and placing my identity in it, it led to a depression so deep and dark, that it took a total rebirth to be free of it. You can read about that here.

Please, remember us. Remember all of us who suffer from chronic pain and diseases. Think twice before you try to give advice, or be helpful. It’s not helping us to say we don’t look sick. It’s not helpful when friends and family don’t check up on us, it’s really not that hard to send a text or a message over social media and ask us how we’re doing. And when we talk, all you have to do is listen. You probably can’t solve our problems unless you have a miracle cure.

I wanted to wait until I was all better to write this. But I honestly don’t know when that will be, or if that will be. And that’s okay, I still believe for a miracle. Maybe not today, but maybe tomorrow, or next week, or next month. Maybe next year, one day the pain will be gone. It’s what I cling to, day after day of my suffering. I think often of the woman in the Bible who suffered with the issue of blood for 12 years.

 25 And a woman was there who had been subject to bleeding for twelve years. 26 She had suffered a great deal under the care of many doctors and had spent all she had, yet instead of getting better she grew worse. 27 When she heard about Jesus, she came up behind him in the crowd and touched his cloak, 28 because she thought, “If I just touch his clothes, I will be healed.” 29 Immediately her bleeding stopped and she felt in her body that she was freed from her suffering. – Mark 5:25-29 NIV

Her story resonates with me every time and I’m in awe of a faith, a desperation for a chance to be free of her suffering that led to her healing. It encourages me to hold on and have hope, in the darkest days when I’m in bed crying from the pain. When I wonder why so few people understand that they can’t see my pain, but I feel it. I’m a very positive person, because I have to fight the darkness and depression every single day. My positivity doesn’t mean that I’m okay, chances are, I could cry at the drop of a hat. But I allow myself to cry when I need to, it’s the only reason I’m able to smile so brightly.

Starting this blog has been one of the hardest and best things I’ve done, telling my story has brought so much support and yes, understanding. Rare disease and chronic pain are hard roads to walk alone, we need support more than we ever did before. So if you know someone who is suffering, reach out, be there for them. Don’t forget us.

I thank you all for reading this far along, for taking time out of your lives to look into mine. And I thank everyone who has supported me, for all of the true friends who have been forged through the fires and for all of the new friends I have met. Thank you. Keep on journeying along your path, no matter what life brings your way, if you know who you are, that is all that you need. You are a child of the king, and he loves you more than anything. Yes, suffering will happen in this world, but you can get through it, you can get through anything with him, because he’ll always be with you.

Stay encouraged, and be blessed.

Pemphigus Vulgaris: Part 3

If you’ve missed the first two parts, please click here and read them first: Part 1 or Part 2

pemphigus chair close up
Chair inspired by pemphigus

My doctor put me back into the hospital immediately, so they could reverse the issues caused by the new medication on top of my flare ups. On the days when I couldn’t take the pain and had to take pain medication, my mind became too fuzzy to do my schoolwork, so I started learning to suppress the pain and think of other things. It was a hard process, and it took much of my willpower, but school to me became a driving force like nothing else. In my mind, it was my way of fighting my disease. Because I could still do this one thing.

The nurses at the hospital often saw my struggles and they helped me to prop up my textbooks, set up my laptop and encouraged me to do well and raise my GPA. I wanted to cry from their kindness, or even from the pain, but the salt from my tears would only burn my face (I had learned that the hard way), so that too, I pushed down. They couldn’t get an IV into me during the stay, they kept popping out every couple of hours and this led to me having to receive a PICC line (peripherally inserted central catheter). They talked it over with me and said I would need one to take home with me anyway to continue my treatments. I was frightened, but compared to the rest of my pain, the numbing needle and the installation of the PICC line was nothing. I didn’t even feel it when they cut into my arm and inserted the line through my insides to my chest area, instead I watched it on a computer screen while they gave me hilarious narration to keep my mind off of it.

This time I was hospitalized for a week, and I felt despair grab hold of my soul. You see, at the time I never knew this disease would be long term. In fact, with my diagnosis I was told that it only lasts about 6 months. I had since then switched dermatologists and it began to settle within me that this was long term, that this might always be my life. It was then that the darkness began to consume me, slowly and quietly it whispered to me that I could never live the life I wanted. It was over.

I didn’t feel brave or courageous, I only knew that it hurt me to cry. And I knew it hurt my family to watch me suffer, they were there with me day in and day out in the hospital in shifts. And when I finally got sent home after a week, with my PICC line still attached, my parents learned how to administer my treatments. Including a treatment they would have to wake up for in the middle of the night. I saw how much work they put into my survival, and I realized that I could only do the same and fight as hard as I could to live.

I was eager to return to my sculpture class, but with my PICC line still attached, I was housebound. And I wasn’t sure who I thought I was fooling, I couldn’t even sit up. Every day I pushed myself to try to move my weak body, it was days before I managed to roll over, but in my mind that was a small victory. Each flare up with pemphigus reduced me to the helplessness of a newborn baby. I could do nothing for myself, so I tried very hard to recover what I could immediately. From my first roll over, I worked from there to roll to a footstool on the side of my bed and back to my bed. From there, I worked, strained, to lift myself to my feet. After I worked out this pattern, I could get up by myself.

My parents encouraged me to walk a bit every day, I still remember my dad chanting “You can do all things through Christ!” as I struggled up and down the stairs, one step at a time. Hating my weakness, proud of my progress, but wanting to be better, stronger. I hated this disease, but also it was a part of me now, there was nothing I could do about that.

After so many treatments from the hospital and home, the infection still lingered and I had to do vinegar baths. No matter how much we tried to dilute the vinegar it burned me to no end, I would scream as it went into every open sore but all I wanted was to be free of the infection and I did whatever it took. It did indeed take out the infection once and for all, and my face finally cleared of the green. In the middle of the night, I had wiped my face with tissues crying and I noticed the green came off. Hopeful, I wiped off the rest of it and saw that the infection had finally lost its hold. I wept so hard that night, praising God for this one thing, the infection on my face had made it hard for me to move my mouth to eat because it hurt so badly just to move my face.

Finally, I could have the dreaded PICC line taken out of me. My dad recorded the progress on video when the nurse came to our house to take it out. Surprisingly, it was just as painless as they told me that it would be. I didn’t feel a thing as it came out of me. I asked if I could keep it, and they let me have the IV part of it. I wanted to always remember what it was like, even though I wanted to forget. I wanted to remember, because someone else might be where I was at during that place. Our pain is never wasted, if we can use it to give hope to others.

I struggled with walking still, but at this point I had missed about 6 weeks of school and I was determined to do whatever it took to catch up with my classes. My mother was working from home to take care of me, and though I couldn’t walk all the way I leaned on her and my sister and they half carried me to the classroom and I began to work with a vengeance. I was behind, but the art poured out of me faster than I could control. I was a whirlwind of grief and emotion, and my teacher gave me a very special project, he allowed me to pour my disease into a chair. To make it the embodiment of all of my suffering, to make it pemphigus itself. And I did.

I destroyed the chair, I cut into it, ripped it apart, redefined the outside. As much work as I did on the poor old chair that I used, I noticed that the insides were still the same. Butchered though it was, it hadn’t changed what it was, it was still a chair. As I worked on this project I realized, after a long time, I had pemphigus but it wasn’t who I was. I was still me, I just didn’t know who I was. I had forgotten my life before pemphigus, because it had ceased to be. Even now I can’t remember how it felt to have no pain, to be on no medications.

The project ripped into my soul as I worked, it made me ask so many hard questions of myself that I wanted to stop, but I couldn’t. I could only press on. I finished up my chair by hooking it up to the same IV that had once been hooked up to me, and it was one of my first pieces that made it into the student art show:

chair hooked up to the iv

I titled it Pemphigus Vulgaris and it sparked many conversations about what the name meant, and I saw some people googling it at the show and I was happy. It was the first time I had sparked conversations about it. I had talked about my disease with my art teacher, he had been the first person to actually ask me about it. I was ashamed of my disease, and I tried to hide my scarring by wearing long sleeve shirts all the time.

Even now, every morning when I wake up, I can look down at my arms and see the stretch marks, the remnants of my skin thinning out from the steroids and bleeding. When the doctor told me they would never go away, I felt defeated. But now, looking at my scars, I thank God for how far I’ve come. I acknowledge pemphigus, not as something that has taken over my life, but as an opponent. And really, isn’t that what everything that comes against our life is?

Some people think I’m strong for dealing with pemphigus, I really don’t feel that I am. But the more I think about it, we are all strong. There’s not a one of us that should be called weak. I have pemphigus, depression, things that I have to fight in this life. But so do you, maybe your battles don’t look like mine, or maybe you too have an invisible disease that torments you, either way, you’re strong too. Because you’re still here and you’re still fighting, even if you don’t feel like fighting right now, that’s okay. Gather your strength and fight another day.

Pemphigus Vulgaris: Part Two

If you missed part one, please check it out here first: Pemphigus Vulgaris Part 1

MEDICINE MANDALA
My medicine mandala

Faster then I knew, I was hurled into the worst flare up I had ever experienced. The pain went from bad to excruciating and my doctor told me I needed to seriously consider another lengthy hospital stay so that we could fight the infection with an IV. I resisted at first, I had started to fear the hospitals. All the unnecessary tests that been performed on me, before and after my diagnosis, weighed heavily on me and gave me horrible flashbacks and high anxiety just smelling things associated with the hospital.

But eventually, I relented. I couldn’t take the pain anymore and even though it was in the middle of school I was hospitalized again. By now I had learned to plan ahead, I had scheduled all online classes with the exception of my Sculpture II class, which I dearly missed as I went through more treatments.

I begged my doctor to let me go home after just a few days in the hospital with treatments, he wanted to start me on a new medication while I was in the hospital though and see if it worked out first. It was a new immunosuppressant. The way that we often treated my disease was this: I took a large amount of steroids because it was the strongest thing in deflating my blisters and holding my disease at bay. From there, a new immunosuppressant would be introduced and the steroids slowly lowered. If the new immunosuppressant could slow or quiet my disease, the steroids could go away entirely. Unfortunately in the first few years, I never reached that place.

This new medication was no different, although I felt great at first taking it and I was able to go home. My body was so weak and full of pain. A strange rash broke out over my body and I couldn’t walk or sit up by myself. It was soon the worst flare up I ever had.

During this time I joined an online support group, I used my laptop to write a bit and journal my experiences as well as reach out to others around the world with pemphigus. I was the baby of the group and they took me under their wing, sharing everything they knew about it with me. My online friends that I met through video games were supportive as well. I fell back on games as a way to distract my mind from the pain that raged through my body when I wasn’t doing homework, and I found that it worked. It was the little things that helped me to manage day after day.

I learned through my online support group, that the medication I was currently on had given them all bad experiences, including taking away their ability to walk. For one of them, it had been permanent. I was horrified and called my doctor instantly, telling him about what was going on and an appointment was quickly scheduled.

I was on the way to be hospitalized again before I knew it, this time I didn’t fight it as much. I had coughed up blood and I knew generally people who did that were not very well off.

I still remember this day, clearer than ever, during my worst times of pain combined. Some days I wondered if it really happened, and recently I confirmed with my mother that this was how it happened. We were on the way to the doctor and she had helped me downstairs like she always did, before we got to the door I remember, I suddenly felt very light, like you might feel before you pass out, only I did much more than that. I mumbled, “Mom?” as I slipped out of her hands to the floor and I could hear her screaming for my brother to come help. And like that, it was over.

All of my pain went away, I felt my heart stop, my organs shutting down. And I was outside of my body, looking down on the scene. I wasn’t alarmed at all, I felt total peace. It was then I realized the true reality of who we are, that our bodies are nothing more than a shell and our soul is the most important piece. As I looked down I saw my mother praying, crying out to God. Later I would learn, that she had just released me to God recently in prayer, and she thought this was the moment that he would take me away. Her screams and prayers, I believe, reached straight to heaven, and just like that, as quickly as I had been pulled out, I was pulled back in. It was the weirdest feeling ever.

But I knew with certainty, that if my time with death was to come anytime soon, that it was not the thing that we all dreaded and feared. We only fear death because all that we know is life. I knew now that compared to the suffering of this world, it was nothing but peace that awaited me on the other side.

When my doctor checked everything and I told him what happened, as he looked me over he could only shake his head in amazement. “I have no idea how you’re alive right now,” he admitted to me. “You should be dead, it’s a miracle you’re still alive.”

I shook with the news, I was both frightened and in awe. I felt unworthy and I cried, my mother and my doctor cried with me. I had seen people die from the pemphigus, I knew that this was no easy disease. I felt ashamed to be alive, I was nothing special. I had never been anything special, but I resolved deep within my heart that if God cared enough to give me chance and chance again, that I would change myself. I would always try to be a positive person, I would encourage others, I would love people, I would be a better person then who I was and I resolved to always become better then who I am.

I realized that every breath that we take, is the true miracle. Every morning that we wake up, is another blessed day that has been given to us. And the more that I lived the more that I found, we are all something special. We all have something to give to the world, and we are all called to do things with purpose. So do them, never let fear hold you back! These were the truths that I carried with me, as I was checked into another hospital, yet again.

Pemphigus Vulgaris: Part One

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I didn’t want to write this. We never do when it’s the hard things do we? It’s much easier to sweep the things that pain us the most under the rug and pat it down with our foot and pretend the lump isn’t there. That some monster isn’t hiding underneath. But at the same time, March is Autoimmune Awareness month and I would like to tell my story during this time. I haven’t done this statistically myself (of course) but they say that 50 million Americans are suffering from autoimmune diseases. And I think it’s time that we find a way to make this better. So here it is, my personal story of Pemphigus Vulgaris.

It all started with strep throat.

I was 19 years old when my entire world flipped upside down. It all started with a bad case of strep throat, before that all I knew was a healthy life. Devoid of doctors and medications, afterwards I would understand what it was like to be on over 20 pills a day. I had a job I loved, a car, and thought myself to be invincible at that point at my life. But I was wrong. I ended up in urgent care after two weeks of having a sore throat and not being able to eat solid foods anymore, they gave me an antibiotic that contained penicillin. My body had a bad reaction to it, a quiet allergic reaction on the inside that triggered my pemphigus.

Let me tell you what pemphigus is, you know all those antibodies that you have inside of your body protecting you from getting sick? Let’s imagine that your body thinks that your body is the sickness, crazy right? But basically an autoimmune disorder means that your body is literally attacking itself from the inside out. This leads to blistering and lesions that form on the skin, in the mouth, nose and basically all over my body with each flare up. By flare up, I mean my body would totally freak out and the blisters would be everywhere. Next because they’re so fragile, it turns into open sores. So basically, think pain. Lots and lots of pain. Everywhere.

My mother had to change my bandages twice daily and I was so thoroughly wrapped in bandages that I looked like a mummy. The hospital became my home away from home and visiting my doctors became a social outing. My life as I knew it ceased to exist, and pemphigus became all I knew. At first they’d put me on heavy pain medication, it was the only way that I could sleep, but then they would take it away. They feared me becoming addicted because they didn’t know how long the pain would last. Many nights I would suffer, I couldn’t walk, I couldn’t even sit up by myself during the worst times.

The open sores on my face got infected and because they were suppressing my immune system to try to keep the disease quiet my entire body became infected. My face looked green, literally. And the times when I did have to go outside to see a doctor, people stared at me and backed away or jumped. I’ve been told that through all of this, I was still smiling. I guess that really freaked people out.

At the time, I had just started college while I was in the midst of treatment. I didn’t know what else to do. I couldn’t work but I loved learning and I went anyway. It was here I was introduced to art. And to all the students at Tri-C, thank you. Because not a single student acted like there was anything wrong with me. They would stare into my eyes past my green melting face and have entire conversations with me about their life, their art, what they were watching on TV. And at school, I still felt like a normal human being and not the monster that I thought I looked like.

My art teacher especially became one of my dearest friends, when we had to pick a found object and demolish it, I brought in one of my needles. Instead of being creeped out by this, he went and bought me a bag of needles from the drug store and let me pour my anger and confusion and pain into those needles. It became this project here:

my first little needle
My first little needle
My full art project, the Vaseline was used underneath my bandages and I incorporated the empty containers
My full art project

It didn’t win any prizes, but I found that by creating, by releasing the pain that was being inflicted on me every day, that somehow, I could still live. That in the eyes of the other artists around me, I wasn’t a freak at all. I was just someone with a story, I was just an artist like them. And we were all capable of creating something beautiful.

For a little while, even though I was in so much pain and realized as Kermit the Frog said, “It’s not easy being green!” I was happy, happy that there was still a little piece of something that I could do. I could create, I could destroy and rebuild. And present my pain as art.

I didn’t know then, that this was only the start of all that pemphigus was capable of. I had no idea what was coming next.

Re:Write and Rebirth

I have Pemphigus Vulgaris, to go in details of all that pemphigus means will require another post. But for the meantime, just know that it is a very painful and misunderstood disease. Before the Re:Write conference, I had just lost my third job because of this disease. After months and months of trying to pull myself together and beat the pain, I still remember tearfully calling in to work saying, “I don’t think I’ll ever be back, but thank you for trying to wait on me.” When I hung up that day I sobbed and cried out to God from the depths of a darkness that had begun to swallow me since 6 years ago when I found out that my life would never be the same.

But I had tried, oh I had tried so hard to blend in with everyone else. I had to work ten times as hard to keep up with the average person because my body was always holding me back. Throughout college, I overachieved mentally on the books and studying because knowledge was the only thing my disease could not take from me.

I’ve lost jobs, countless chances to hang out with friends, and many days when I couldn’t even get out of bed I found myself alone with me, God, and my writing.

And so I wrote.

I poured my heart into poetry and finished my second novel. The pain had spread through my body to my fingers and I only stopped writing when my fingers cramped from the pain. It was in the midst of this darkness that various people started trying to give me their own advice for how I should live. “Just get a job you don’t like.” “You’re strong, so you’ll be okay.” “You’re the most positive person I know!”

Every time I tried to share my pain, my darkness, I got a clichéd answer as tears ran down my face. You see, my disease cannot be seen by others, it is an invisible monster that attacks me from the inside out. And eventually, I stopped trying to share at all. I sank inside of myself, angry at people for not being there, for not checking on me. Angry at God for my suffering and not being able to live a “normal” life. Angry at myself from all the times people told me if I just had a little more faith, God would have healed me by now.

But then, quiet hopes began to get whispered into my life again. Medical bills that I had no way of paying, getting paid off. God constantly providing for me, although I’ve had no income to speak of since July of 2014. Winning a scholarship to the Re:Write conference, being provided with the funds to go. Self-doubt flooded my mind and I thought, how can I survive in a car trip for 22 hours to get to Austin, Texas? What right do I have to even go there?

My family and my boyfriend encouraged me to go, and somehow I knew this would be another turning point in my life and I went. Joint pain and all, pemphigus and all, I survived the car trip and when I got to the conference, I was surrounded by so much love, hope, peace and joy. I found there were so many people like me, and every single person at that conference that I was able to listen to and share with, they saw me. They really saw me. They were me and I was them, from the published famous writers to the writers who were just starting out as I was.

I could speak openly of my pain, of my darkness, of my fears, of my dreams and hopes. And they would all listen patiently, and respond in kind. As I listened to the speakers, one by one, they addressed every single battle that I had been going through recently, because they had gone through the battle too. They understood. They had beat the darkness, and when it still came to torment them, they beat it again. I rediscovered my identity in Christ and now I know, that I am perfect just the way I am.  I’m more grateful than ever for the constant support that I received from my parents, my boyfriend, and my sister who were there for me day in and day out over all the years of my battle. They too, were a wonderful gift from God to me.

I never needed to be like everyone else. My health was never a requirement to serve him. My pain had never gone unseen by him. Every day of my struggle, he was there with me. As I cried out in anger, he held me. When I cried myself to sleep from the pain, he was there. He had never left my side. And I returned to his side, fully and completely reborn. Understanding the complete depth of his love for me, just as I am.

I am at peace.

Because now I know, it’s okay to suffer. As Mary DeMuth, one of the speakers at Re:Write, said:

“Nothing significant in the kingdom of God ever happens unless death occurs. After death comes resurrection.”

I have had deaths of so many things in my life, my plans, what I thought was success, my dream of being super healthy and having no pain or signs of pemphigus. A steady pay check that I could depend on, when really, all I needed to depend on was Jesus. Miracle after miracle has happened, and he has shown me multiple times over my life that he will never fail me. So yes, for now, I am still in pain. I don’t know what will come next, but that’s okay.

I know that I am a writer, and so, I will write.

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