CHD Warrior Stories: Taking Submission

I am now accepting submissions for Congenital Heart Defect Warrior stories. These can be about children or adults, about people that are living or in memory of those we have lost. 

February is CHD Awareness month, so I’ll spend the month sharing my son’s CHD story and inviting others to charge theirs. I will post all submissions I receive, but I may make minor edits for grammar/spelling/language. 

Please include up to 3 pictures of the CHD Warrior and the Warrior’s family.

I would love to hear all of the amazing stories of strong, resilient people that go through so much, but bring such joy to our lives.

Please send an email to eandowriter@gmail.com with your submission. Stories will be posted in the order they are received.

Thank You!

~E&O

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Suffering in Silence; I will be your friend.

It seems so clich√©. The concept of suffering in silence. But to the chronically ill, sometimes the only way to get through the day is to do it quietly. People get tired of hearing, “I’m tired,” and “I’m sore.” Because these generalized statements sound like nothing but lame complaints over and over. Why bother telling someone that you are hurting if they really don’t care, or if they really don’t understand the depth of the hurting? Even in the attempt of trying to explain the pain and the fatigue, we sound whiney or exaggerating. I may be the first to tell you that the chronically ill don’t exaggerate. They don’t have to. The chronically ill have been in pain for so long that it takes significant pain even to admit that something hurts.

My entire life has been pain. Migraines,¬†knee pains, back pain, wrist pain, finger pain, even throat pain. But when you are in constant pain, every day pain becomes your zero on the pain scale. Because to you, that pain must be what everyone feels. It must not count. One day someone finally tells you that pain is important. That pain that you haven’t mentioned all these years for fear of looking whiney or weak, it is significant. You really aren’t supposed to be in constant pain. That moment when it sinks in; When you finally understand the reason for the pain, for the exhaustion, for the struggles: Relief. Finally, you don’t feel so crazy. You don’t feel like you need to hide and suppress every feeling. I began to talk more about my pain to those closest to me, but still they don’t understand and I am back to silence. Because now they think that I make it up since being diagnosed. That I go to the list of possible symptoms and just list them off for fun, or out of laziness, or out of craziness.

Even with doctors telling me there are things in my body that are broken, that don’t work properly or that are more damaged than should be at my age, I find it very hard to get those that are not chronically ill to understand. So I stay silent. To friends. To my children. To my spouse. Online support groups and my beautiful sisters, also chronically ill are my only places I don’t feel alone. On especially hard days, I look for someone to understand. How sad is it that those closest to me can’t understand, and in some cases, won’t even try.

You have a friend out there. Even if you are like me with little help or understanding around you. You have me. I will be your friend.

E&O

Welcome.

Over the last year, I have been diagnosed with a dozen illnesses, most of them chronic, some I have had for years undiagnosed, some recent as a result of the others. My illnesses, while still somewhat new and only moderately severe, have caused a whole rollercoaster of events and changes in my life.

As this is my initial post, I will just start with background information. Though I prefer to keep this anonymous for now, I will tell you a little bit about myself to better understand my future posts.

I am in my late 20s. I am a wife, a mother, a sister, a veteran, a friend, a dreamer. I grew up in a middle class home, divorced and remarried parents and a happy life. At 21, I joined the military. While in the military, I was nearly constantly in the clinic with joint pain, coughing, migraines, stomach pain, etc. Each was treated separately with very little results. After having my children, I left the military. A year later I was diagnosed with Ehlers-Danlos Syndrome (EDS). It is a connective tissue disorder that affects pretty much every system in the body in some way. Generally, hyperextension of the joints, joint pain, stretchy skin, stomach issues, aortic dilation, velvety skin, odd scarring, and more. Symptoms very greatly from person to person. One person may be highly functioning and in little pain, while the next is in a wheelchair and swallowing down pain pills.
My EDS is fairly mild (in my non-professional opinion). However, due to this diagnosis, I have also been diagnosed with the following within the last year during routing testing from EDS diagnosis: High Blood Pressure, Obstructive Sleep Apnea, Sjogren’s Syndrome, Polyneuropathy, Herniated discs, Irritable Bowel Syndrome, Dry skin, Dry/Damaged Eyes, Chronic Fatigue Syndrome, and more minor things. Additionally, we were made aware of my child’s severe condition and were able to get him the surgery he needed.

How do I keep going? Endurance and Optimism.

Stay tuned as I reveal more.

E&O