I was weary from all the tests, not just the tests this year to find out what the pain was this time, but all of the tests over the past 7 years. I was just tired, the doctor was dodging around it trying not to say what she thought it was but I finally asked her outright.
“What is causing all of this pain?”
“I believe it’s fibromyalgia.”
She said it so easily, like it wasn’t a major upheaval. She said it had probably been there for a very long time almost as long as the pemphigus. We had been so distracted trying to contain the pemphigus that the fibromyalgia had snuck up on me very soon afterwards.
I had a name for the pain.
I knew the name well.
I knew that myalgia was temporary, but my pain had been steadily growing worse over the years so I already felt it coming and started to research it.
I had a name for the pain, but the pain doesn’t show.
My pain is invisible, I can hide it behind a smile, a laugh, a joke. I can hide my pain behind technology. I can hide my pain in a room full of people and force myself to walk upright without flinching, but it’s hard to hide your pain from those who know you better than anyone. They carry my pain as well.
Every day, it’s a struggle to get out of bed. Every day I can barely accomplish the things I need to do to function. I have only so much energy and many things get put to the side. All I could feel was the deepest despair as my entire world shook and crumbled.
I had always held on to the thought of one day being well, it helped me through the darkest of days. There is no cure for fibromyalgia, and yes I do believe there will be one day. However, I can no longer live my life as one waiting to be well. I can only structure my days very carefully and use my energy wisely, I can only enjoy the moment, each second a precious gift. I don’t have to pretend to be okay anymore.
Maybe you know someone with chronic pain, or maybe you can’t even see their pain because, like me, they have become skilled at hiding it from others. If you take the time to look into their eyes and see the unseen pain. If you can take the time to listen to their struggles and hold them gently, that does much more than a temporary pain medication because it gives us the strength to carry on.
Through all the darkness and struggles of pushing myself to be able to overcome it and live my life in spite of the pain, another book idea starting to grow inside of me and while I’m doing NaNoWriMo I would like to share the story with all of you. You can follow along at WattPad using this link:
If you haven’t read the first three parts, please read them first here: Part 1, Part 2, Part 3.
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.
If you’ve missed the first two parts, please click here and read them first: Part 1 or Part 2
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:
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.
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.
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:
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.