I was 19 when I got Pemphigus Vulgaris, a lot of you already know my story. I got it on a 1% chance from amoxicillin for treating strep throat. I didn’t know how my life was to change from then, I didn’t know of the cruelty that would come from people and doctors as well. What I do know is, it’s time to raise awareness. There are a lot of rare diseases and today we’re going to join our voices together and be heard.
Listen to us.
If we’re being open enough to tell you about our pain, don’t feel like you have to have all of the answers. Don’t even think that you need to compare it to something in your life, you don’t. Please don’t tell us “at least you’re still alive”. We have enough days where we’re grateful for just that, but many more days when the darkness can consume and being alive is torture. Please, set the phone down for just a second, look us in the eyes and see us. We’re confused and scared and being able to share emotions with someone else helps to relieve the burden.
Please, be kind.
Especially when you don’t understand. If you see a young person in a riding cart in a store, don’t assume they’re just having a joy ride. You don’t need to make a comment about it. Sometimes, we really need those carts. All times, we really just need kindness. We’ve got enough going on without dealing with others negativity. A little kindness, from random strangers, nurses or friends has always been able to turn an entire day around.
Lift us up.
It’s hard dealing with something that you and most doctors don’t even understand. We have enough on our plates without having to deal with anything you feel you need to take out on us. Instead, encourage us. Not with cliché words, if you say you’re going to be here for us then mean it! Don’t disappear when the going gets tough, we value companionship more than you know. It gets very lonely when all you know is hospitals and bedrest. I still can remember every single person who visited or checked up on me and it warms my heart still.
Even though we appreciate your enthusiasm, if we have something like Pemphigus (blisters that turn into open sores all over the body), too tight hugs can actually be very painful. I have many hilarious, yet painful, memories of tight squeezes or smacks on the back during a flare up. I didn’t have the heart to tell them I almost passed out from the pain. So DO keep giving hugs, but let’s keep them gentle.
Most importantly, we’re people too.
We’re still people just like you, my face may turn green from infection or you may not see anything at all that shows a flare up. I may be tightly wrapped underneath bandages, but I’m just a person too. We’ve all got our own burdens to carry and mine just happened to be chronic illness. Even though I’m feeling better now, I have a lot to work through from when I was in my worst moments. If you know anyone with a rare disease, please go the extra mile. We need it.
I also made a video about the topic you can see here on my YouTube Channel:
I’ll be the first to admit it, 2015 started out awful, it had a great high with the writer’s conference. After that, my stability was chipped to pieces. It was the worst year of my chronic pain and illnesses, I was going from doctor to doctor, each one swearing they knew how to fix it. I was let down, multiple times, by people who I had loved and trusted, who were close to me and I was more vulnerable. My depression was at an all-time high and I was asking doctors to refer me to a psychologist because I realized that I needed some professional help.
Suicidal thoughts swarmed my brain and I came to the sad conclusion in my last post that I may never be well again. When I said so to my boyfriend, thankfully, he believed for me that I would be well when I couldn’t even believe it myself. I felt abandoned by people and couldn’t understand why God couldn’t just throw some healing my way from the sky. But it was all in good time if it hadn’t been for the journey, if it hadn’t been for all of the pain physically and mentally, I wouldn’t be where I am today.
I wouldn’t have met all the other wonderful people who are fighting their own battles and we do all have our own battles to fight. I wouldn’t have learned to depend on God, instead of doctors and medications.
My dermatologist told me up front that he didn’t care about my pain, it was the last time I went to see him.
The pain management doctor that I believed could truly make a difference ended up causing a chronic migraine that lasted for two and a half MONTHS. When that didn’t work, he told me to exercise an hour a day, 6 days a week. And not to come back until I could do that for three months.
My rheumatologist told me just keep on working at my job, I told her I had already lost it from not even being able to walk.
On top of my pain, the chronic migraine and nausea limited what I could eat and it was a struggle just to find things that wouldn’t make me feel sick.
Then, just when I had given up, just when I thought that pain was forever. I got a comment on my last post, telling me to look into a holistic doctor and I did some research and found one. He wasn’t anti-medication, but going over things we realized how many medications had caused issues which led to my depression which led to me feeling worse and having more trouble sleeping in an endless loop.
One night when I was still awake at 7 am after a night of struggling to sleep, I saw a friend posting about how well she had slept, how her chronic pain was going down. I inquired about it and looked into Plexus. It wasn’t some miracle drug that just cures all your diseases, but it does help regulate your body systems and at this point I felt like my body was falling apart. Instead of grasping at straws, this time, I sat down and prayed about it and asked God to provide the money for me to get it. I also talked about it with my holistic doctor.
Within 5 days of taking it, my sleep had improved and my migraine had gone away for the first time in two and half months. I felt better on the inside, more peaceful, not so depressed, almost happy. Truly happy for the first time in a long time, not because my situation had changed, but just because I felt better on the inside.
I realized just how badly my body had suffered on the inside from all of the medications that I had been on and yes, all of my poor food choices beforehand. I could really only blame so much on the medications themselves.
After seven years of chronic illnesses and pain, I finally had a break through.
I’ve been taking it for almost a month now and the changes inside my body have been phenomenal. I wish that more doctors would tell people about natural changes and supplements that can help our bodies to recover, but I also take responsibility for not looking into it sooner myself.
My chronic pain is not completely gone, I still have a mild bit of pain in my back. But it is nothing like it was before, I have much more energy every day, I’ve said goodbye to chronic fatigue! I sleep deeply at night again and don’t keep waking up. I’ve been losing tons of inches around my waist, suicidal thoughts no longer cloud my mind, everything is clear again and some days I feel like I’m in a dream compared to where I was last year.
Before I started Plexus, I had come off all of my medications for Fibromyalgia under the guidance of doctors, not on my own. I am now only taking Synthroid, for my hypothyroidism, and a medication for migraine prevention. Otherwise, I’m just taking my supplements and feeling happy and healthy. My body has almost fully recovered to the point where I feel I can exercise again.
Most importantly, I feel like I can live again.
I wanted to share this because I would not have known about this as an option if someone had not shared it with me. I thank God every day for helping to guide me, providing for me and for starting out 2016 with so much positivity and hope. I’m thankful for everyone who believed for me to be well when I couldn’t believe it myself.
I know that Plexus is not a cure for diseases, but what it does for the inside of your body is truly amazing. I didn’t try out Plexus originally for the weight loss, I just knew my body was really messed up and could definitely use help with regulating everything. I take the Tri-Plex and Xfactor, along with 1000mg extra Vitamin D, as was suggested to me by my holistic doctor, and 1000mg calcium a day.
I have learned the importance of taking care of our bodies and every day I’m making smarter food choices, it’s like a load has been lifted off of my mind. All that time I was chasing after different medications to try, what I really should have been focusing on was giving my body the tools it needed to fight back and slowly heal the damage done.
I know this was a long post, but I haven’t updated for a while and had a lot to get off of my mind, thanks for reading through to the end! God bless! ❤ Thank you to everyone who was still supporting my blog while I was away.
A funny thing happened, well only funny now in hindsight. My dermatologist immediately in January said we were going to hit the pemphigusaggressively with another treatment of Rituxan. The paperwork went through, blood work, but my insurance denied it.
My rheumatologist said the treatment would take care of all the pain I’ve been experiencing, so I got a new insurance and was practically dancing in the streets. I went back to my dermatologist for another blood test this past Tuesday, instead of a blood test he just said it was off, no treatment. It was just too aggressive.
I think I took it as well as anyone would have taken it who has gone through pain for years on end, almost seven years for me, only to be told that this was the year that everything would be gone with one more treatment. Only to find out, it wasn’t going to happen, he wasn’t even going to try.
I cried for hours.
I had never been so close to a breakthrough and I had never believed it so much. Sure, doctors have been telling me for ages they’ve got it all figured out and it was going to be better, but this time, I believed them.
His reaction was strange to me and when I tried to tell him how bad the pain was, he just blew me off and went to the next patient. It wasn’t his problem after all. I did a lot more research on Rituxan when I got home, I know that the treatment is dangerous. Whenever death is listed as a “side effect” you know you’re dealing with something serious.
The first time I got the treatment was the end of 2013, I had two treatments of it and was able to come off the immunosuppressants. I was scared of it, of course. A patient before me had just died from it, but I was so desperate to beat the pemphigus that I clung to my hope in God and went through with it anyway. After that, my body was extremely weak and I didn’t put two and two together at the time, but when I went back to work in 2014 the pain went into overdrive and it ended with me hardly being able to walk.
The more I looked around and saw how other people with pemphigus reacted to the Rituxan, I realized a lot of us ended up with myalgia. It’s not listed in one of the side effects, and it could be just because of the pemphigus and Rituxan mixing, I don’t know. I’m definitely not a doctor, but I think this is something serious that anyone looking at the Rituxan (Rituximab) treatment should definitely be aware of.
The moral of the story:
It is better to take refuge in the Lord
than to trust in humans. Psalm 118:8 (NIV)
People will let you down, it’s bound to happen. They’re only human after all. Being in pain for this long of a time, I’ve seen the cycle repeated time and time again. It hurt especially coming from my dermatologist because I’ve been going to him for at least 3 years.
I can tell you that through it all God has always been there for me. Every major breakthrough in my illness had the handprint of God on it, there was never any medication or treatment that saved my life, whenever my life had been in danger from this disease I took refuge in God, the one who created me.
I’m still not sure where to go from here, I’ve been working harder than ever at my physical therapy. I’ve researched food that contain natural pain relievers and I’ve told myself daily, it’s going to be okay.
Yeah, I’m not going to be perfectly well like I thought I would be. But I can still better myself, I can make my body stronger and one day maybe the pain will be gone for good. For now, I’m just happy for another day to try.
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.
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.