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.

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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.

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:

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:

Understudy to Pain

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Pain is the lead

I am the understudy

I’ve learned all the lines

All the rules

Of how to live life

But when it comes time to take the stage

It is never my turn


I’m never in control

I feel prepared, I could take over

I could be the star

It’s not my time

I wait, I practice

Maybe today

Maybe tomorrow


It will be my time

For now, I am minor

I almost don’t exist

I am here, in the back

Silent, waiting

Letting the pain lead my days

Until I can step into the role

And live