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.

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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

Pemphigus, Rituxan and Myalgia

Psalm 118 8

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.

Praise Through the Storm

Job 1 21

I’m tired and weary. The thing about chronic pain is that you never get a break or a day off. It discourages me sometimes, even when I cling on to hope for a better future, I worry about how long it will take to come. On top of the pain, things seem to keep spiraling out of my control. I see prayers being answered left and right for other people I’m praying for, but when it comes to my own issues there’s a significant lack or slowness to the results.

What do I do when I feel like my world is falling apart and nothing is going my way? I read the book of Job.

Now I’m not the type of person who finds comfort that someone else “has it worse than me”. If anything it just makes me feel worse that other people are suffering too. But the curious thing about Job in the Bible, is that when literally everything was going wrong, just because the devil decided to see if he could make Job curse God, he still didn’t blame God for it. He still kept on trusting God.

Job was rich and had tons of children, he had a good life. And in one fell swoop, he lost all of it. His livestock and his children were all killed in one horrifying twist. Even then:

20 At this, Job got up and tore his robe and shaved his head. Then he fell to the ground in worship 21 and said:

“Naked I came from my mother’s womb,
    and naked I will depart.
The Lord gave and the Lord has taken away;
    may the name of the Lord be praised.”

Job 1:20-21

But that still wasn’t enough for the devil to destroy his life, after that he went back and asked for permission from God to attack Job’s health next and said then Job would curse God, even with Job losing everything and his health in tatters, he still didn’t curse God. In time, God restored everything to Job and more. It always lets me know that even in the darkest of times, there is always hope for complete restoration.

I strive to hold on, even when I can’t understand what God is doing in my life right now. For the first time in a long time, I feel like I’m exactly where God wants me to be in my life. I’m blindly walking out on the water and trusting him to show me the way. I’m believing that the plan he has for my life, for all of our lives, is greater than any of us could ever comprehend.

If we continue to trust him through the storms, if we continue to pray and praise him when we hurt the strongest, when we have no way of knowing how things will work out, or when they will. Then we can all say “The Lord gave and the Lord has taken away; may the name of the Lord be praised.”

Here’s a song I love from Joseph: King of Dreams (a retelling of the story of Joseph) that resonates with how I feel much of the time. It’s called You Know Better Than I:

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.