This hope

Through this illness, struggle, and pain ,and through this fight I have this hope.

This hope of being able to find true happiness beyond this struggle.

This hope of being able to be stronger from all of this.

This hope of being able to get better, to fully recover.

This hope of being able to try new things and not be afraid.

This hope of being able to truly live not just survive.

This hope of being able to find myself in my struggle.

This hope of being able to reach my goals for the future.

Hope, Faith, Goals, Dreams. I want to make these things the focus of my life moving forward.

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It’s ok

Its ok to live a life others don’t understand. – unknown

Needed this! I have to remind myself that’s it’s ok that other people don’t always understand.

❤️💙💜

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Understanding

You just need to put yourself in someone else’s shoes and then see how they feel and then you will understand why they are reacting or why they are behaving the way that they are behaving. We need to be fair.  Navid Negahban

A few years I would have never imagined how hard living with my illness would be. How hard everything seems to be. How everything changed. How frustrated I feel.

Living with a chronic illness there are battles we face everyday.

There are so many things we can’t control.

We live with the uncertainty.

The questions that may never be answered.

When your too sick to think about anything, but your illness.

The doctors that don’t listen, or believe you. The people around us that don’t understand how hard living like this is.

We Wish and hope for some understanding.

I wish and hope more people understood that just because I don’t always talk about my pain, that it doesn’t mean I’m not in pain. I also hope that when I do talk about my illness that more people don’t just assume that I am obsessed or depressed.

My illness is real, and so are my feelings about my illness.

Nothing about being chronically ill has been easy, but I have gotten through all of my worst days that I can keep going. The more I more forward the more I want to live not just survive.

“I don’t talk about my illness so that you will feel sorry for me. I talk about it so you will know what I’m going through, why I am the way I am. I don’t want your pity. I want your understanding. And sometimes, I talk about it because I had a bad day and just like you, talking about the bad thing makes me feel better. It just so happens I have a lot of bad days and my illness is usually at the core of it.” – unknown

““One of the hardest things about being chronically ill is that most people find what you’re going through incomprehensible—if they believe you are going through it. In your loneliness, your preoccupation with an enduring new reality, you want to be understood in a way that you can’t be. “Pain is always new to the sufferer, but loses its originality for those around him,” the nineteenth-century French writer Alphonse Daudet observes in his account of living with syphilis, “In the Land of Pain.” “Everyone will get used to it except me.”” -New Yorker, “What’s Wrong With Me?”

Update : Another battle!

I know I haven’t updated much lately. I have been feeling pretty awful the past few weeks. I have had this post in my drafts for two weeks, and even writing has been hard for me. Sorry if this post has a lot of errors!

These past few weeks I have been starting to feel even worse than usual. I have been feeling weaker, extremely exhausted, every little thing is harder than usual. I having been having to sleep more during the day. My brain has been feeling more exhausted and heavy than usual. I have been having a hard time thinking, reading, writing, and even having a conversation sometimes. I have lost some weight, and overall my body has been very unstable. I have also noticed that when I sit in the outside in the sun, even for just a few minutes my oxygen drops really low.

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I got my results of my neurotransmitter test back, and there worse than they have ever been. None of them were in normal range, and they were all severe. I am barely making any epinephrine. Most of them changed drastically from the last time I tested them back in February. So many of my metabolic pathways are not working. My body is having an extremely difficult time processing just about everything. Lately my oxygen and sugar have been very unstable even when I am just sitting or laying down.

Something has to change soon. Lately my doctors have come with a plan to try to force and drive nutrition to help my oxygen, sugar, and for my DNA. In the past we haven’t been able to push my body because it has made me feel worse, but I have no choice now. I have to try something to open up pathways, to live. To have a better quality of life.

I am ready to live Not just survive.

I am very grateful I have doctors who take so much time to help me.

I would appreciate all your continued support and prayers. I have still have a tough road ahead.

Luke 1:37 – For with God nothing shall be impossible.

Philippians 4:13 – I can do all things through Christ which strengtheneth me.

When its dark enough…

For the past few years a day hasn’t gone by without some type of pain and exhaustion. I have never been in the “recovery” process. I have never been able to gain momentum. My illness has only gotten worse. For the past two and half years my symptoms has been severe everyday, and we have never been able to get a handle on pretty much anything.

I have my “normal” problems that I live with, but Every time my body has a crisis episode, I become severely ill, and my “normal” chronic level becomes worse. Every single time. It never goes back to where was. For the past two and years the “episodes” become more severe and more frequent.

Exactly two years ago my illness became a lot worse. I had one of the worst episodes I have ever had.

At the time I had swelling in my brain, along with a lot of other problems, and that changed the severity of my illness completely. The pain, and pressure in my head was unlike anything I had ever felt before. My mind and body went in survival mode. I didn’t think about anything accept the next step, the next minute. Eventually the swelling did go down, but my “normal” chronic level changed. My brain has never been same, the chemistry changed, everything became worse. Ever since then I felt some type of pain or fatigue almost every waking moment.

The problems didn’t end there, the past year and half I have had hundreds of appointments. I have tried hundreds of different supplements. I have spent hundreds of hours detoxing, working out scar tissue, fascia, adhesions, and a lot of other work. I had to have the ligaments, and tissue of my jaw fixed through other alternative treatments. The list continues to go on.

I try to take it one day at a time. One step at a time.

Even though my illness changed for the worse, I changed for the better. My perspective on life changed. The experienced changed me. It gave me strength.

It brought me closer to God. It has taught me how to be patient, and to trust God no matter what.

This continues to be a challenge I face everyday, but I guess its true what they say….When its dark enough, you can see the stars. – Ralph Waldo Emerson

Nothing worth having comes without a fight, got to kick the darkness ’til it bleeds daylight-Bruce Cockburn

Unpredictable

 Living with severe, debilitating symptoms I can never let my guard down.

Everyday is unpredictable.

Every few hours I have to continually try to treat my symptoms or it becomes out of control.

Not only does the pain and exhaustion get worse, but my whole body functions extremely slow. My organs, lymphatic, CSF, slow down severely. The pain becomes unbearable. I can’t function like this.

Soon I have symptoms on top symptoms, and my body goes down hill very quickly. I have to dig myself out of a hole just to get back up to my “regular” chronic symptoms.

How I am supposed to break this pattern?

I won’t give up.

You say, “It’s impossible.” God says, “All things are possible.” (Luke 18:27)

You say, “I can’t do it.” God says, “You can do all things.” (Philippians 4:13)

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Fighting

Nothing about being chronically sick is easy. Being able to do little things usually seem like big things. Little dreams seem like big dreams.

Going a day without needing an appointment or going without pain, and exhaustion would be a amazing. Its been years since that has happened. I pray it will.

I am unable to drive, go to school, have a job. But fighting to get through the day, surviving the day, is a job all on its own.

Everyday seems like a fight. Everything I do, I fight to do it.

I fight everyday. I fight for my heath. I fight to live. I fight for a future.

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Even if I am feeling a little better my symptoms are still debilitating. Being able to sit up for an hour or so without too much pain or exhaustion is considered a better day. Being able to sit outside, or walking into the kitchen to get my food or drink is something I usually  have to push through to do. Even taking a shower, with a shower chair is still hard most of the time.

How did everything become this hard?

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I can’t run away from my illness. To get through this I have to face it head on, and that is what I try to do everyday.

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I don’t know direction I am headed in.

Do I even have a direction?

I know what my goal is, to get better, to live, not just survive. I guess I will start with that.