Depression and Chronic Illness

Just make sure that you survive

I had depression and anxiety long before I ever had my chronic illnesses. There’s something about constant, sometimes excruciating pain that can make those things a whole lot worse.

I do my best not to burden other people with my problems. I try to listen to theirs and help out when I can. When people ask me how I am, my smile falls into place instantly and I try to tone down whatever my real answer might be. The truth is that I’ve just gotten really good at smiling. I don’t like to make other people uncomfortable. I take note of who isn’t bothered when I talk about my pain and depression and I’m glad to have friends that check up on me when I go missing for long stretches of time.

Most of the time, I’m just curled up in a ball in bed in pain. I try not to be seen too much when it’s too hard to keep my smile in place, when every step hurts so bad that I don’t want to move, when the tiniest stresses can leave me in a heap of tears.

These are the moments that I don’t show to the world.

Instead, I smile, I say I’m fine and try to ignore the fact that my entire body is in pain. I work hard to focus on conversations and try to keep up with a social outing every now and then. Most of the time, I can manage. On my good days when the pain isn’t too bad, I can get a lot of things done but I pay for it later.

More recently, all of my illnesses seemed to flare up at the same exact time. Everything from Pemphigus on my scalp to my Eczema spreading from just my hands to random places all over my body. I knew that I was stressed, but I didn’t know how to stop. I wanted to be there for everyone, I wanted to be at every family get together that I could. I wanted to spend more time just doing things instead of being sick. So I ignored all the warning signs, even the signs of me slipping into a very deep depression.

I had to go back to taking baths every day just to get rid of the stiffness in my body enough that I could move. I was crying at least once a day and as I often do when things get worse, started to mourn the person that I used to be. I never let myself properly feel all the emotions and though I haven’t given up on one day reversing my health issues, I also had to start dealing with the fact that at best, I might just learn to manage my pain.

My mind became the darkest part of it all, I was flooded with a constant barrage of suicidal thoughts and in my darker moments, actually went into planning how I would do it. I couldn’t imagine day after day of this pain, but somehow I kept waking up the next day. Not “thankful to have another day”, but disappointed that I had lived through another night.

I knew that I had to do something, but not the doctors this time. I’m just too weary of going to doctors being told to try something and come back in 6 months while dealing with the daily pain on my own. Generally, I would be worse off than when I start the new medications. Instead, I turned to health and nutrition books. I knew that I had stumbled on something with supplements and the imbalances in my body. I’ve started tweaking my supplements and over time I slowly noticed the suicidal thoughts starting to fade away.

The pain is still bad, but I’ve once again improved my sleep after sleeping very poorly for the past 8 months. I’ve also written out some positive affirmations to say upon waking and have taken to doing some type of exercise daily. As far as doing my best to control the amount of stress in my life, I’ve had to limit myself and not go to everything just because. I now protect myself, from overdoing it, from people, and from myself.

I’m very blessed to have people who care enough to check up on me and talk me down from the ledge when I need it. And though I’m not completely out of the dark spot yet, I’m getting there. When I woke up today, I wasn’t disappointed to be alive. I was happy enough to be here, pain, weakened body and all. To sit here in the trenches with all the other chronic illness/pain warriors and just to say, if you need to talk to anyone, I’m here.

If you need to get help, get it.

If you need to practice self-care, do it.

It’s your life and you’ve only got one, whether you’re healthy or chronically ill you’re going to have your own battles to face and it’s up to you how you survive them, just do survive them.

I’d like to include a song that helped me a bit as I went through everything, it’s okay to let yourself feel, especially if you’ve been hiding behind a smile just like me.

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When You Finally Break Through

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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.

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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.

You Are Enough

Made on Canva.com
Made on Canva.com

Have you ever felt overwhelmed? I have and I do, time and time again. This week especially was difficult, first I was sick with who knows what, but with a lack of immune system the smallest thing can kick my tail and my body falls apart completely trying to fight it. I didn’t get a lot done this week, I wrote when I could and I crafted a bit but the smallest things took so much energy. Mostly I rested. Getting out of bed was my little victory for most days.

I found myself lacking, because I couldn’t do all that I wanted to do. I didn’t even do all that I felt that I needed to do some days, but what I needed to set as a main priority was taking care of myself. I find that, for me at least, taking care of myself mentally and physically was never high up on my to do list and when I do make specific time out for myself I feel kind of bad, like I‘m being selfish. But if I don’t take care of myself, I’m in no position to help anyone else. The point of the matter is even if you don’t get a lot done, even if you don’t meet your goals for the week, that’s okay.

You are enough, just as you are.

I’m not sure why there’s always this constant battle with myself over whether or not I’ve accomplished enough to the point where I feel okay to take care of myself. I’ve been doing better at staying positive and remembering who I am and that I am enough, but it’s still something that I fight to cling on to each day.

People are always so busy, and with the act of being busy we can easily become frazzled and forget that we need to rest. That it’s okay for things to slow down, even when things are still and it’s just you and the silence, you’re still enough.

There’s nothing you can do that would make you any more of enough or worthy than you are right now in this moment. Of course there are skills that you can better yourself in, but it’s not what defines you as a person. You are literally the only person like you that there is. You have an amazing personality and your smile is uniquely yours. It’s not about what you can accomplish, or can’t accomplish right now. It’s not even about future goals that may still be outside of your grasp.

It’s about living, truly living.

Enjoying every single breath that you take. No matter what the day may bring, each day is a gift. So do things you enjoy and spend quality time with the people who you love to be around that make you smile. It’s okay if things are rough right now, they will get better eventually, one day. But for now, even with things imperfect as they are, right now is a great time to be enjoying life.

Overcoming Depression

Mini me overcomes depression!
Mini me overcomes depression!

For most of my life I have struggled with depression. Recently I’ve been able to talk about it more. Long before the pemphigus even came, I was depressed and attempted suicide several times. So you can imagine afterwards it definitely lingered around. The thing about depression is that often it can be a very silent sneaky thing. There were friends I found who struggled with it silently, just as I did. But on the outside we always put on a good show around people. Suppressing your emotions is probably one of the worst things that you can do.

I can honestly say now, that this is the freest I have ever been from depression. I am ridiculously happy and have been for quite some time now! I thought the things I learned during Re:Write would wear off eventually, but every time I forget what I learned, overcome by life or emotions. I pause, I think about all that I have to be grateful for and I pray. My circumstances have not changed and honestly I’m still in the same place I was in before, but I’ve changed. And that is all the difference.

I know when you’re depressed you can get tired of being told to “think positive” but really that was the turning point for me. Just as I realized my own beauty by telling myself every day that I was beautiful, which is another story! By thinking positive every day even when the negative thoughts bombarded my mind, I was able to rise above them. My thoughts have always been my biggest weakness, I am my worst critic. I see everything that I do wrong and magnify it by 100%. In my mind, I am insecure and afraid. I could not mold myself into perfection, I always did something wrong and I punished myself in my mind.

I still have to battle that sometimes, however now when a negative thought comes, I do not feed it, I starve it. I don’t even give it a second thought, because I know once I start to dwell on it, it will settle in my spirit and slowly take over until I believe the lie. Then the lie becomes truth and I slip down the slippery abyss of depression, once you fall in it’s a lot harder to get out then if you just avoid the falling in in the first place.

So when the negative thoughts come or if you start to feel a bit down, grab a trusted friend and tell them about what’s going on and release everything. Don’t leave anything in your mind to quietly whisper lies to you. Talk to God about it, I know it sounds crazy but he’s listening to you too. Because I was ashamed of being a Christian and depressed, God was the last person I wanted to talk to about my emotions. But also the best person because it is always through his joy that I find true joy. Happiness is fleeting and passing, it changes depending on what circumstances you are in, joy is the one that will stick around! When you find your way to who you are, to truly who you are, sons and daughters of an amazing Father who only has your best at heart? There is nothing for you to be anxious about anymore, all you need to do is pray.

If you do need professional help as well, I encourage you to seek it out. I learned about art therapy in school and I just became my own therapist through art. I worked through many issues and expanded it to poetry, at the time my poetry was very dark. But it pulled the darkness from inside of me and put it on paper. Find a healthy way of release, be it writing or art and let everything out. See the pattern here? Never hold the dark negative thoughts inside, always find a way to release them somehow.

Don’t feel alone. Whatever you’re going through, you’re not alone. Don’t let that lie settle in your mind, people do care and other people may be going through exactly what you’re going through. Speak up about it, it really is okay if you’re not okay. If you need to vent a while, that’s okay. If you need to cry a while, that’s okay too. I still allow myself to cry when I need to, I cannot stress enough how much releasing everything helped me to find freedom. And if you don’t have anyone close to talk to, be sure to talk to God! Or get in touch with me, I’m more than happy to listen.

Overall, find things that you enjoy doing and do them. Make time out for yourself and relax. And when you feel yourself starting to become stressed, handle it, breathe. Don’t let it build up inside of you. You are loved, you are wonderful just the way that you are.

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.