Trust Me, My Pain Is Real

Trust Me, My Pain Is Real

My RND Story
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During the summer before eighth grade, I hurt my ankle at band camp. I went through physical therapy, but the pain still persisted. However, the x-rays and other imaging showed that my ankle was perfectly fine, that nothing was wrong. This was confusing, because I walked with a limp because of how badly it hurt. Touching it hurt. It just really hurt.

Luckily for me, I have a mom who would not give up until she got an answer for what was wrong with my foot. We ended up at the Children's Hospital of Pittsburgh, and saw a nationally accredited doctor who diagnosed me with RND a.k.a. Reflex Neurovascular Dystrophy.

What the heck is that?

It is a member of the complex regional pain syndrome family, and is also known as Amplified Musculoskeletal Pain.

What does it mean?

According to the Children's Hospital of Pittsburgh, RND is a condition "that leads to severe pain in the joints and muscles in children. The pain may be described as sharp, burning, achy, crampy, a pounding hammer, or cutting like a knife. The pain is caused by a nerve sensitivity whereby the nerves in the body send pain signals to the brain inappropriately" (RND Overview).

What about my story?

My story fits right in there with 80% of other patients diagnosed with RND (Sherry). Psychological factors, particularly stress, played a huge role in my pain. While in treatment with a physical therapist and a psychologist, they found that the more stressed I became, the more pain I was in. Nearly everyone has some kind of horror story about starting junior high/middle school, but mine is a little different.

The biggest thing in helping me get my RND under control is managing my stress. Sometimes, like finals time, I feel my ankle again, because my stress levels are higher than normal. However, it is not the debilitating pain that it once was. For many patients, blood flow to the affected area decreases or increases, causing the joint/afflicted area to feel either cold or hot. In my case, the blood flow decreases, causing my ankle to be cold to the touch. Very rarely does it actually hurt anymore.

Many people are not as lucky as I was. Their pain is dismissed as nothing, or imaginary, which only compounds the psychological stress. If you trust me, trust them, their pain is all too real.

Cover Image Credit: A Mile A Day

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Everything You Will Miss If You Commit Suicide

The world needs you.
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You won't see the sunrise or have your favorite breakfast in the morning.

Instead, your family will mourn the sunrise because it means another day without you.

You will never stay up late talking to your friends or have a bonfire on a summer night.

You won't laugh until you cry again, or dance around and be silly.

You won't go on another adventure. You won't drive around under the moonlight and stars.

They'll miss you. They'll cry.

You won't fight with your siblings only to make up minutes later and laugh about it.

You won't get to interrogate your sister's fiancé when the time comes.

You won't be there to wipe away your mother's tears when she finds out that you're gone.

You won't be able to hug the ones that love you while they're waiting to wake up from the nightmare that had become their reality.

You won't be at your grandparents funeral, speaking about the good things they did in their life.

Instead, they will be at yours.

You won't find your purpose in life, the love of your life, get married or raise a family.

You won't celebrate another Christmas, Easter or birthday.

You won't turn another year older.

You will never see the places you've always dreamed of seeing.

You will not allow yourself the opportunity to get help.

This will be the last sunset you see.

You'll never see the sky change from a bright blue to purples, pinks, oranges, and yellows meshing together over the landscape again.

If the light has left your eyes and all you see is the darkness, know that it can get better. Let yourself get better.

This is what you will miss if you leave the world today.

This is who will care about you when you are gone.

You can change lives. But I hope it's not at the expense of yours.

We care. People care.

Don't let today be the end.

You don't have to live forever sad. You can be happy. It's not wrong to ask for help.

Thank you for staying. Thank you for fighting.

Suicide is a real problem that no one wants to talk about. I'm sure you're no different. But we need to talk about it. There is no difference between being suicidal and committing suicide. If someone tells you they want to kill themselves, do not think they won't do it. Do not just tell them, “Oh you'll be fine." Because when they aren't, you will wonder what you could have done to help. Sit with them however long you need to and tell them it will get better. Talk to them about their problems and tell them there is help. Be the help. Get them assistance. Remind them of all the things they will miss in life.

If you or someone you know is experiencing suicidal thoughts, call the National Suicide Prevention Hotline — 1-800-273-8255

Cover Image Credit: Brittani Norman

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An Incurable Disease Doesn't Change The Love I Have For You

Because one day the one you love the most is fine and the next day they're not, it causes devastation you never truly recover from.

nadoty
nadoty
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Loving someone with an incurable disease is the most emotionally straining thing I have ever experienced.

My significant other and I have been together for almost six years. During the summer of 2018, we all noticed the significant changes he was going through. He had lost around fifty pounds and had a lack of appetite. We had figured something was going on, however, we didn't realize it was anything serious.

Fast forward to the Fall semester of 2018. I had visited my boyfriend and we had expressed certain concerns, such as, through the night I would try and get him to stop uncontrollably itching his legs to the point of bleeding, or that he was looking a little yellow and was exhausted all the time. After seeing his sister in November, while I was at school, she pleaded with him to go to urgent care because he did not look good. He was yellow, exhausted, and very sickly looking. We didn't realize that the urgent care visit would be the precedent of the rest of our lives.

After coming home for Thanksgiving and spending a week straight in the hospital with him, it finally set in that something was not right. Between all the vomit, getting moved for testing, the weakness, the constant calling for medications because the pain was so severe, and the almost month-long stay in the hospital, it hit me full force that something was really wrong. Words will never truly describe the emotions I was feeling, or the burden of my thoughts that I felt were too selfish to pass on anyone, so I kept them to myself.

When we finally got the diagnosis, we were surprised. PSC, otherwise known as Primary Sclerosing Cholangitis, is an incurable liver disease that affects the bile ducts which become scarred and inflamed, more likely than not lead to cirrhosis and an inevitable transplant. There was no cure, rather the only solution was a liver transplant, and even then the disease can be recurring.

I was thinking selfishly. I was torn in two. What would our future look like? Could we have children? Could we ever do the things we used to?

Loving someone with an incurable disease is a mix of emotions. There is a constant fear in the back of my mind that he is going to wake up in intense pain and have to be rushed to the hospital. There is a constant fear of every time waiting for the bi-weekly blood test results to come back, in fear that his Bilirubin spiked again or he is undergoing a flare up and needs to be hospitalized. There is a constant anxiety that one day he's going to be fine, and the next day he won't be. Even the simple things, such as laying beside one another, was a constant fear I had, due to the pain he was in every day. What if I hit him in my sleep on accident? What if I accidentally hugged a little too tightly and caused him pain?

Loving someone with an incurable disease can be a fluctuation of emotions, however, he makes it worth it.

nadoty
nadoty

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