Pemphigus Vulgaris #RareDiseaseDay

rare disease day

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.

Gentle hugs!

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:

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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.

Fibromyalgia: Life with Unseen Pain

I was weary from all the tests, not just the tests this year to find out what the pain was this time, but all of the tests over the past 7 years. I was just tired, the doctor was dodging around it trying not to say what she thought it was but I finally asked her outright.

“What is causing all of this pain?”

“I believe it’s fibromyalgia.”

She said it so easily, like it wasn’t a major upheaval. She said it had probably been there for a very long time almost as long as the pemphigus. We had been so distracted trying to contain the pemphigus that the fibromyalgia had snuck up on me very soon afterwards.

I had a name for the pain.

I knew the name well.

I knew that myalgia was temporary, but my pain had been steadily growing worse over the years so I already felt it coming and started to research it.

I had a name for the pain, but the pain doesn’t show.

My pain is invisible, I can hide it behind a smile, a laugh, a joke. I can hide my pain behind technology. I can hide my pain in a room full of people and force myself to walk upright without flinching, but it’s hard to hide your pain from those who know you better than anyone. They carry my pain as well.

Every day, it’s a struggle to get out of bed. Every day I can barely accomplish the things I need to do to function. I have only so much energy and many things get put to the side. All I could feel was the deepest despair as my entire world shook and crumbled.

I had always held on to the thought of one day being well, it helped me through the darkest of days. There is no cure for fibromyalgia, and yes I do believe there will be one day. However, I can no longer live my life as one waiting to be well. I can only structure my days very carefully and use my energy wisely, I can only enjoy the moment, each second a precious gift. I don’t have to pretend to be okay anymore.

Maybe you know someone with chronic pain, or maybe you can’t even see their pain because, like me, they have become skilled at hiding it from others. If you take the time to look into their eyes and see the unseen pain. If you can take the time to listen to their struggles and hold them gently, that does much more than a temporary pain medication because it gives us the strength to carry on.

Through all the darkness and struggles of pushing myself to be able to overcome it and live my life in spite of the pain, another book idea starting to grow inside of me and while I’m doing NaNoWriMo I would like to share the story with all of you. You can follow along at WattPad using this link:

The Phantoms

The Phantoms cover

Deeper Still

You are never alone

The past few weeks have been traumatic to say the least. I’ve still been recovering from the blow that this may be my reality for the rest of my life. I’ve always clung to the thought of being better one day, somehow. Once that slipped away from me, I wasn’t sure what to do and my depression came back in waves.

The gripping truth of the matter settled heavily on my mind, my pain went from bad to worse and I couldn’t even write for a while. I asked my physical therapist about it and she gave me a few things to help strengthen my hands, but with how rainy it’s been my pain has just gone into overdrive. They said it’s normal for pain like mine.

Some days I feel like I don’t understand, it seems like as soon as I conquer one part of living with chronic pain and illness something else comes that totally throws me for a spin.

Being unable to write for the short amount of time left me alone with my thoughts (when I wasn’t going vegetable mode watching Netflix) and I realized it is the way we grow. We struggle with the storm and as I talked about in a previous post, sometimes we may even learn to keep our eyes on Jesus and walk on water.

The trials of the world seemed like they were finally underneath me and I had a grip on a much larger reality than myself. But the storm got bigger and I felt God pulling me further and further out to sea, away from all my safety nets. Even writing was unavailable to me for a while, I had no way to vent my emotions and I fell. Drowning in the sea of troubles.

I couldn’t find myself.

All I saw was darkness and despair, all I felt was that my hope was ridiculous and I drowned. It was as though I had cracked but couldn’t repair myself this time, but slowly, surely over the past few weeks I felt Jesus reaching out his hand and I finally took it. Pulling me above my thoughts, above my pain, above my frustrations and now I take a tentative step forward.

I’m not used to being a water walker and I’m sure with the next big disappointment that comes my way, I may forget who I am and start to drown again. But I also know, when you feel like absolutely nobody else in the world feels precisely how you do at this moment, you are never alone. He’s always walking with us, guiding us and comforting us.

Taking us deeper still, to painful, yet beautiful, places we have never been before.

Here’s a song that resonated with me while I was going through:

4 tips for Cooking Healthier on a Budget

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Healthy eating doesn’t need to be expensive! I know, crazy thought, right? A lot of people may think that one excuse for not living a healthier lifestyle is how expensive it is to cook and eat healthier. However, you’d be surprised at how affordable it actually can be. It really just depends on where you shop and how you shop.

  1. Discount grocery stores

Overlooking discount grocery stores can be a mistake, plenty of times I have found high-quality items at these stores for better prices. A lot of the name brand food items can have very similar comparisons for less, you really are paying for the name. The upside is if you buy fruits and vegetables from here, they will often be ripe already and you won’t have to wait for them to ripen. This also means that you shouldn’t get more than you need at discount stores, but just get enough for the week.

  1. Buy in Bulk

If you have a large family, you can research in your area for places to buy fruits and vegetables in bulk. After some looking around, I found a food terminal in my area where I was able to buy apples and oranges by the box. Or pretty much anything I wanted. This was great for whenever I was making my own juice at home. They have a ton of amazing deals, all you need to do is look around and find them.

  1. Go for leaner meats

Chicken and ground turkey are very affordable. Sometimes I can find deals on fish, but mostly chicken and ground turkey are my go to staples for protein. I’ve switched out ground beef for turkey in quite a few dishes, not only is it healthier, but it’s often more cost-effective as well.

  1. Cook for more than one meal

If you have a lot of food already cooked and ready to eat, you’re less likely to need a lot of junk food on hand for snacking in-between. It also allows you to be prepared to eat many small meals in a day, instead of just three large ones where you are more inclined to overeat. By shopping and cooking in bulk, you can actually save money in the long run. If you have too much, don’t cook it all at once but freeze some for later.

These are just a few tips to get you started, but as always, I started with what I already had. Don’t feel like you have to eat up all the junk food or sweets in your house before you can start making healthier purchases, just start right now a little bit at a time. Buy a head of lettuce instead of the prepackaged bags, try out different vegetables incorporated with your normal meals. It’s the small changes that can help you gradually shift to a more permanent change and a healthier lifestyle.

I’m still working on my own changes and over the years, my body has started to crave more healthy, less processed food. I also don’t feel lethargic when I’m giving my body what it needs to survive, I try to take control of my health in any way that I can and I encourage you to do the same.

If you’d like to check out an easy recipe that I put up on my channel for chicken tenders at home, you can watch that here:

He’s Always Been Faithful

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Most days are hard for me, some days are harder than others. Having chronic pain takes its toll on you emotionally as well as physically. Mentally, every day I have to struggle to hold myself together. I’m already a sensitive person. I feel every emotion to the deepest depths, it helps me to experience joy and love to great extremes, but also sadness and pain. I have something of a pain tolerance, I’m sure, but it still bothers me in the long run. Sometimes I just want to cry and scream. I am weak, I am overcome.

But that’s when I’m strong.

But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.

2 Corinthians 12:9-10 (NIV)

I’m always amazed by Paul when he wrote this in the Bible, he had his own suffering to deal with. He begged God and begged God to take it away from him, just like I so often do. Instead, he started to boast about his weaknesses, delight in them even. I’m usually quick  to respond to people who say that I’m strong, that I’m not. I’m sooo not. I’m weak, some days I’m so weak that I don’t know how I can go on another day. I don’t think that I can survive, but somehow I do. But in your weakness, there is strength. In your dark places, there is light.

Life was never meant to be easy, nobody is having smooth sailing out there. But when we encounter ourselves in these places of brokenness, it’s the way that we rebuild ourselves that matters.

There are many things that I don’t have, some things I would like to have but can’t, some things I believe I would need to have. I see prayers being answered for other people left and right and I think, what about me? When’s my big miracle coming?

Soon.

And just like that, little blessings began trickling in. Providing in ways that show me that, not only does God care about my needs, but also about things that I want. The more that I walk by faith and not by sight, the more that I take those little steps every day to just be grateful for the things that I have, the more that things just seem to work out. It’s not any gigantic miracle like I thought, but instead its tons and tons of little miracles that make me dance and sing. It makes my faith grow and it lets me know, he still cares. He never left me, and he never will. On the days like today when I can’t find the energy to go on, I don’t have to. I can be completely and totally weak. I can be broken.

The Lord is close to the brokenhearted and saves those who are crushed in spirit.  Psalm 34:18 (NIV)

It’s okay to be broken, it’s okay to be worn down and tired. In fact when you’re crushed in spirit, God is closer than ever and it’s all going to be okay. He never said that we won’t have days when we feel like we can’t make it, but that’s when it’s time for us to call in some heavy back up.

If you’re in a place of brokenness right now, know that God loves you and so do I.

You can make it. Just keep going.

Re:Write and Rebirth

I have Pemphigus Vulgaris, to go in details of all that pemphigus means will require another post. But for the meantime, just know that it is a very painful and misunderstood disease. Before the Re:Write conference, I had just lost my third job because of this disease. After months and months of trying to pull myself together and beat the pain, I still remember tearfully calling in to work saying, “I don’t think I’ll ever be back, but thank you for trying to wait on me.” When I hung up that day I sobbed and cried out to God from the depths of a darkness that had begun to swallow me since 6 years ago when I found out that my life would never be the same.

But I had tried, oh I had tried so hard to blend in with everyone else. I had to work ten times as hard to keep up with the average person because my body was always holding me back. Throughout college, I overachieved mentally on the books and studying because knowledge was the only thing my disease could not take from me.

I’ve lost jobs, countless chances to hang out with friends, and many days when I couldn’t even get out of bed I found myself alone with me, God, and my writing.

And so I wrote.

I poured my heart into poetry and finished my second novel. The pain had spread through my body to my fingers and I only stopped writing when my fingers cramped from the pain. It was in the midst of this darkness that various people started trying to give me their own advice for how I should live. “Just get a job you don’t like.” “You’re strong, so you’ll be okay.” “You’re the most positive person I know!”

Every time I tried to share my pain, my darkness, I got a clichéd answer as tears ran down my face. You see, my disease cannot be seen by others, it is an invisible monster that attacks me from the inside out. And eventually, I stopped trying to share at all. I sank inside of myself, angry at people for not being there, for not checking on me. Angry at God for my suffering and not being able to live a “normal” life. Angry at myself from all the times people told me if I just had a little more faith, God would have healed me by now.

But then, quiet hopes began to get whispered into my life again. Medical bills that I had no way of paying, getting paid off. God constantly providing for me, although I’ve had no income to speak of since July of 2014. Winning a scholarship to the Re:Write conference, being provided with the funds to go. Self-doubt flooded my mind and I thought, how can I survive in a car trip for 22 hours to get to Austin, Texas? What right do I have to even go there?

My family and my boyfriend encouraged me to go, and somehow I knew this would be another turning point in my life and I went. Joint pain and all, pemphigus and all, I survived the car trip and when I got to the conference, I was surrounded by so much love, hope, peace and joy. I found there were so many people like me, and every single person at that conference that I was able to listen to and share with, they saw me. They really saw me. They were me and I was them, from the published famous writers to the writers who were just starting out as I was.

I could speak openly of my pain, of my darkness, of my fears, of my dreams and hopes. And they would all listen patiently, and respond in kind. As I listened to the speakers, one by one, they addressed every single battle that I had been going through recently, because they had gone through the battle too. They understood. They had beat the darkness, and when it still came to torment them, they beat it again. I rediscovered my identity in Christ and now I know, that I am perfect just the way I am.  I’m more grateful than ever for the constant support that I received from my parents, my boyfriend, and my sister who were there for me day in and day out over all the years of my battle. They too, were a wonderful gift from God to me.

I never needed to be like everyone else. My health was never a requirement to serve him. My pain had never gone unseen by him. Every day of my struggle, he was there with me. As I cried out in anger, he held me. When I cried myself to sleep from the pain, he was there. He had never left my side. And I returned to his side, fully and completely reborn. Understanding the complete depth of his love for me, just as I am.

I am at peace.

Because now I know, it’s okay to suffer. As Mary DeMuth, one of the speakers at Re:Write, said:

“Nothing significant in the kingdom of God ever happens unless death occurs. After death comes resurrection.”

I have had deaths of so many things in my life, my plans, what I thought was success, my dream of being super healthy and having no pain or signs of pemphigus. A steady pay check that I could depend on, when really, all I needed to depend on was Jesus. Miracle after miracle has happened, and he has shown me multiple times over my life that he will never fail me. So yes, for now, I am still in pain. I don’t know what will come next, but that’s okay.

I know that I am a writer, and so, I will write.

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