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.