Before the Diagnosis

Now, I'm stuck in a gray area, waiting for another diagnosis.

I’ve talked about many stages of illness before, but now as I face this one again, I realize just how traumatizing the waiting and pain are when you have no idea what’s wrong with you. Now I’m stuck in a gray area, waiting for another diagnosis. Holding my breath, wishing for the best but halfway expecting the worst.

A while back I thought I had just gotten the stomach flu and I did my best to ride it out, but instead of getting better, it continued to get worse. To the point where the pain was so bad that I went to the Emergency Room.

It was a long drawn out wait and my parents sat with me. Distracting me from the pain long enough until I could get a bed. I got a shot and some medications and after the CAT scan I was waiting to be told that it was in fact just the stomach flu. I had overreacted and it was just the stomach flu.

That was what I wanted to be told.

But I wasn’t.

Instead I was told it wasn’t my appendix at least or a cyst, but something was very wrong. The doctor threw out names like Crohn’s disease, celiac, a stomach ulcer, or irritable bowel syndrome and referred me to a gastroenterologist doctor. He also gave me a diet for irritable bowel syndrome in an attempt to ease the pain while I wait. Along with some antacids and nausea medications.

The truth is I’m scared of food, every eating experience is a guessing game. You would think a banana wouldn’t cause excruciating pain and nausea, but it did. An apple also kept me up all night holding my stomach in pain, while in smoothie form they’re much easier for me to digest.

I have to keep a food diary of what I eat and how I feel afterwards. Even more alarming than my current health state is the fact that I don’t know what’s wrong.

There’s always a bit of relief with a diagnosis, a certain agreement in the fact that I am not crazy. My pain is real. What also follows the diagnosis is a wave of emotions that I don’t know if I’m ready to handle right now. I felt like I was finally getting a grip and pulling myself up out of depression. Now, I’m back at the start again and feel pretty helpless.

It’s hard to write these words, but as always, it’s for everyone else out there like me who suffers quietly. The one who rides the ups and downs of chronic illness. For all of us, I will keep record of my journey. And as we always do, I will find a way to pull through.

Just give me some time.

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.

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.

Fitness and Health: How I lost 100 pounds

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I used to weigh 289 pounds. During my battle with my autoimmune disease I was put on such a high dosage of steroids that my appetite was ridiculous. I was ashamed to eat out in public because I could easily consume two full meals at a restaurant and still feel hungry. When I came to the realization that being sedentary on top of eating so many calories in a day was easily going to tip me into the 300s and beyond, I decided to start making changes.

I wanted to start a healthy lifestyle for many reasons. One of those reasons was with all the health issues I had going on I didn’t want to get anything else from being overweight. I wanted to take charge and have control over my health as much as I could. And for another, I had learned to love myself. Truly and completely, just as I was.

I would at first stare in anger at myself, hating what I had become. But I read somewhere in a book (I can’t remember which one) but it said to practice telling yourself that you love yourself and that you are beautiful in the mirror every day for 30 days. It took me beyond 30 days to feel like I wasn’t crazy but I actually did love myself. Even with the “moon face” from the steroids, even though my teeth aren’t perfect, even though I was overweight, even though I had scars and discolorations that would never go away, I was beautiful.

By loving myself, I also realized that I had to take care of myself. Recklessly consuming junk food and chocolate (tons and tons of it!) were not making my appetite situation any better. My steroid dosage had been lowered and I decided to start where I was. I knew next to nothing about exercising and losing weight, but I knew what my doctor had told me countless times. Eat right, exercise, drink water. There’s really no magic formula.

I liked to dance, so I started off with a game called Dance Dance Revolution. There was a dance pad on the floor and you had to step on the arrows in time to the music. There was different difficulty settings on the game and I started off on about easy to medium depending on the song, I did 30 minutes a day. I didn’t do anything to my eating immediately, and because of that, there were many comments made about how it was counterproductive that I still ate whatever I wanted. I felt disheartened, but I knew the weight hadn’t just jumped on me one day and it wasn’t going to come off in one day either.

I cut pop out of my diet first, I knew I was drinking most of my calories. Next I cut back on sweets, but I didn’t give them up completely at this point. I was just trying to focus on exercising every single day and making it a part of my routine, even when I was sore or in pain, I would go to great lengths to try to get in some kind of exercise.

The progress did not happen overnight, and though I lost weight quickly at the beginning from making small changes it has been a long road ever since then. Going through many health issues and new medications through it all slowed me up a lot. I fell off the wagon time and time again, I binged on chocolates when I was depressed. I’d stop exercising for months and then pick myself back up again.

One of my art teachers once told me:

“Inspiration and motivation will only carry you so far, but if you keep up your determination, you can do absolutely anything you put your mind to.”

He told me this because I really sucked at making pottery, but I would go to that classroom every day. Before class, after class. I would take my clay home with me and work at it until I got better. He told me that was the kind of determination I needed to use on whatever I wanted to do in life and I applied it to my health journey.

Even when I fell, I got back up. I didn’t look at the scale because it depressed me. But I was shocked when I went to the doctor’s office and noticed how fast the weight was falling off of me. I had to keep getting smaller clothing and eventually other people began to notice too.

I ended up losing 100 pounds, against all odds. Even suffering from hypothyroidism, I just got the needed medications and kept pressing on. Every battle with health issues pushed me back some, and yeah it’s happened again. But I keep picking myself back up, the best way to make a change in your life is to never give up. I still haven’t reached my goal healthy weight yet, but that’s okay. I’m well on my way, and I’m determined to make it. I won’t let anything stop me or hold me back.

If you’ve struggled with being overweight, or just want to make healthy changes in your lifestyle, I say do it! Don’t over-think it, don’t let anyone else tell you that you can’t do it. You can do absolutely anything that you put your mind to. Take small steps, take it one day at a time, but also keep in mind the future you that you’re working for. It won’t be fast or easy, but it is well worth it.

This won’t always be your life

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

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

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

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

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

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

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

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

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

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

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

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

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 Two

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

MEDICINE MANDALA
My medicine mandala

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

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

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

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

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

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

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

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

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

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

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

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

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