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.

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17 thoughts on “Pemphigus Vulgaris: Part Two

    1. Thank you very much, I remind myself of that miracle and it helps me to stay positive! Thank you for reading, I’m glad now that I’ve started telling it, I hope that it can help others!

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  1. Pingback: Pemphigus Vulgaris: Part Two | Tandyramp's Blog

  2. Truly an inspiration. I should complain much less about my own ailments and take into consideration that I am still alive with a purpose. Thank you for sharing your story. You will be in my prayers. It sounds like a terribly hard road to travel, but you do so with such grace.

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    1. Thank you for reading! I’ll have part three coming up this Friday, still working on it. Yes, always just focus on letting God use you, ailments and all! It helps me keep going

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  3. This is one of the most inspiring posts I’ve ever read. I have my share of invisible chronic illnesses that cause me so much pain and dysfunction. I hope one day I’ll be able to write an inspiring post like this. God sent you back down here because you have things to do, maybe like this? You are one incredibly brave soul, I might add. I wish you the best on your journey. May God bless you today, and everyday.xxx

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    1. Thank you so much, you don’t know how much this means to me. Writing this series has been one of the hardest things that I’ve ever done. And I’ve always thought that if I could just help one other person suffering from invisible chronic pain that has taken over their lives, it would be more than worth it! May God bless you too, and carry you through your own battle.

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  4. Mission accomplished. That was my main purpose for starting my blog and I always said if I only help one person, it would be so worth it. I’ve helped many, or so they say. You might not see that if you looked at my blog because I’m not in a good place right now, but I just write it as it affects me, no sugar coating. I was a real hot mess when I started my blog and I was trying to be positive. With the support of people like you and seeing what you are going through and how you are able to handle it even at its worst, really helps. I’m gonna be following you all over the place, girl! Keep writing. The writing part of blogging I find very therapeutic because it’s a way to get it out without running around acting like a crazy mad woman, trust me that is not pretty. I’ve tried that. I prefer to write about it. LOL I’ll see ya around. Really glad I found your blog today. Thank you for your kind words. As always, God Bless!

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    1. Thank you, I will! It really is very therapeutic. In the darkest days I’ve always written in my journals or wrote poetry to help me get through, and it’s always refreshing to talk with someone who understands, God bless you too! Going to check out your blog now

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  5. I used to also use journals, but I never got any feedback…………………so my blog is basically my journal, so you may see some really dark things, but with several invisible chronic illnesses that’s just what happens and I want to share that with the world so people can try to understand what it’s like to be us. I don’t do it for sympathy by any means. In a lot of my poems you’ll hear my pain, but also see my strength and will to live, to learn how to cope. Now, the next day I may be saying that I’m done and giving up once and for all. LOL it’s not really funny, but it is…………………………….just sayin……………………hope you know what I mean. Take care.xx God Bless!

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    1. Yes, I know exactly what you mean!! And I’m glad that you are sharing your journey as well, I’m happy that I can help spread awareness for those who don’t know.

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  6. Pingback: Pemphigus Vulgaris Part 3 | Rebecca Q. Bryant

  7. Pingback: Pemphigus Vulgaris: Part 4 Where I am now | Rebecca Q. Bryant

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