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

Pemphigus, Rituxan and Myalgia

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A funny thing happened, well only funny now in hindsight. My dermatologist immediately in January said we were going to hit the pemphigus aggressively with another treatment of Rituxan. The paperwork went through, blood work, but my insurance denied it.

My rheumatologist said the treatment would take care of all the pain I’ve been experiencing, so I got a new insurance and was practically dancing in the streets. I went back to my dermatologist for another blood test this past Tuesday, instead of a blood test he just said it was off, no treatment. It was just too aggressive.

I think I took it as well as anyone would have taken it who has gone through pain for years on end, almost seven years for me, only to be told that this was the year that everything would be gone with one more treatment. Only to find out, it wasn’t going to happen, he wasn’t even going to try.

I cried for hours.

I had never been so close to a breakthrough and I had never believed it so much. Sure, doctors have been telling me for ages they’ve got it all figured out and it was going to be better, but this time, I believed them.

His reaction was strange to me and when I tried to tell him how bad the pain was, he just blew me off and went to the next patient. It wasn’t his problem after all. I did a lot more research on Rituxan when I got home, I know that the treatment is dangerous. Whenever death is listed as a “side effect” you know you’re dealing with something serious.

The first time I got the treatment was the end of 2013, I had two treatments of it and was able to come off the immunosuppressants. I was scared of it, of course. A patient before me had just died from it, but I was so desperate to beat the pemphigus that I clung to my hope in God and went through with it anyway. After that, my body was extremely weak and I didn’t put two and two together at the time, but when I went back to work in 2014 the pain went into overdrive and it ended with me hardly being able to walk.

The more I looked around and saw how other people with pemphigus reacted to the Rituxan, I realized a lot of us ended up with myalgia. It’s not listed in one of the side effects, and it could be just because of the pemphigus and Rituxan mixing, I don’t know. I’m definitely not a doctor, but I think this is something serious that anyone looking at the Rituxan (Rituximab) treatment should definitely be aware of.

The moral of the story:

 It is better to take refuge in the Lord
than to trust in humans. Psalm 118:8 (NIV)

People will let you down, it’s bound to happen. They’re only human after all. Being in pain for this long of a time, I’ve seen the cycle repeated time and time again. It hurt especially coming from my dermatologist because I’ve been going to him for at least 3 years.

I can tell you that through it all God has always been there for me. Every major breakthrough in my illness had the handprint of God on it, there was never any medication or treatment that saved my life, whenever my life had been in danger from this disease I took refuge in God, the one who created me.

I’m still not sure where to go from here, I’ve been working harder than ever at my physical therapy. I’ve researched food that contain natural pain relievers and I’ve told myself daily, it’s going to be okay.

Yeah, I’m not going to be perfectly well like I thought I would be. But I can still better myself, I can make my body stronger and one day maybe the pain will be gone for good. For now, I’m just happy for another day to try.

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.

You Are Enough

Made on Canva.com
Made on Canva.com

Have you ever felt overwhelmed? I have and I do, time and time again. This week especially was difficult, first I was sick with who knows what, but with a lack of immune system the smallest thing can kick my tail and my body falls apart completely trying to fight it. I didn’t get a lot done this week, I wrote when I could and I crafted a bit but the smallest things took so much energy. Mostly I rested. Getting out of bed was my little victory for most days.

I found myself lacking, because I couldn’t do all that I wanted to do. I didn’t even do all that I felt that I needed to do some days, but what I needed to set as a main priority was taking care of myself. I find that, for me at least, taking care of myself mentally and physically was never high up on my to do list and when I do make specific time out for myself I feel kind of bad, like I‘m being selfish. But if I don’t take care of myself, I’m in no position to help anyone else. The point of the matter is even if you don’t get a lot done, even if you don’t meet your goals for the week, that’s okay.

You are enough, just as you are.

I’m not sure why there’s always this constant battle with myself over whether or not I’ve accomplished enough to the point where I feel okay to take care of myself. I’ve been doing better at staying positive and remembering who I am and that I am enough, but it’s still something that I fight to cling on to each day.

People are always so busy, and with the act of being busy we can easily become frazzled and forget that we need to rest. That it’s okay for things to slow down, even when things are still and it’s just you and the silence, you’re still enough.

There’s nothing you can do that would make you any more of enough or worthy than you are right now in this moment. Of course there are skills that you can better yourself in, but it’s not what defines you as a person. You are literally the only person like you that there is. You have an amazing personality and your smile is uniquely yours. It’s not about what you can accomplish, or can’t accomplish right now. It’s not even about future goals that may still be outside of your grasp.

It’s about living, truly living.

Enjoying every single breath that you take. No matter what the day may bring, each day is a gift. So do things you enjoy and spend quality time with the people who you love to be around that make you smile. It’s okay if things are rough right now, they will get better eventually, one day. But for now, even with things imperfect as they are, right now is a great time to be enjoying life.

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.

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.