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An Article From The Mighty I Wanted To Share

  An article from The Mighty that I wanted to share What I Wish You Knew: The Side of EDS No One Sees Christina Gooch April 14, 2018 As many of my fellow zebras know, people often downplay the seriousness of this disorder. Not out of malice, mind you, but due to a lack of understanding. “Well it can’t be that bad, EDS just means you’re super bendy, right?” EDS is not just “being super flexible.” It is progressive, painful, incurable and horribly limiting. I caused a shoulder subluxation the other day when I tossed a burp cloth across the room for my husband. I deal with hip subluxations multiple times daily. Yes, even during, ahem, “intimate times.” It’s about as fun as it sounds. My fingers stiffen and lock up at random, and I have so little strength in my wrists and hands that I can’t even open a jar of pickles by myself. I’ve gotten very good at just popping my joints back into place when they start to slip out. I often have to force my body up out of bed or off a chair or couch wit
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Chronic Illness Doesn't Get Better

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There are good days. There are bad days. It never goes away. People mean well, but it just makes my blood boil when people tell me to get well. No matter how much you say "chronic illness" you still hear it.  I'm in a lot of pain but I managed to cook dinner. Super yummy balsamic glazed chicken breasts with roasted garlic potatoes and zucchini. It was divine.  Still in a lot of pain, but I'm trying not to take the Norco because it makes me feel super yucky, but helps the pain so it's a loose- loose situation.  Ben won't let me go talk to the ortho surgeon or rheumatologist until we get better insurance in November, so this pain isn't going anywhere anytime soon. I really need to see my cardiologist too, I'm way overdue with her, as well as my gyno. But I guess I'll just have to live until I can see them.  Started looking for a wheelchair for when I need it, which is getting more frequent.  Day thirty one Chronicle: Complete. 
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Another Dislocation

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Dislocated my right shoulder again this evening. My husband was able to get it back in. It's just so incredibly painful from four dislocations in the span of a week. The pain killers are barely touching it.  My daughter and father are visiting my sister and her family in Nashville for a few days. It looks like a blast. I really wish I could've been okay to go, but once again, my health prevents me from doing fun stuff.  I miss my sister and her boys so much.  My husband came home and cleaned some since the house was a disaster from being unable to use my right arm hardly at all and a lot of orthostatic intolerance. Migraines have been happening a lot lately too.  I'm super sore, and my lower back, where I had surgery on a herniated disc a couple years back is really getting bad again.  Well, enough whining.  Prayers for some physical relief and to have my usual optimism back would be appreciated.  I need to be able to function a little soon. Ben said he feels like a slave b
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Flares

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Been mostly bed bound for a little over a week. Had to go to the hospital because my husband couldn't set my right shoulder dislocation. They're sending me to an orthopedic surgeon to talk about surgery. Also referred me to a rheumatologist to talk about my hEDS.  I posted an article about understanding chronic illness for abled people, my mother thinks I posted it just for her and not the 556 people following me, and has blocked me on Facebook and will not answer my texts. Mature. For some reason she gets super offended when I try to raise awareness about differently abled people.  Well, last night I dislocated my right shoulder again but eventually Ben was able to get it back in.  Having trouble breathing and can't find my inhaler.  In so much pain and beyond tired.  Would love prayers and support.  Day twenty nine Chronicle: Complete. 
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Deep Depression

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Shoulders, back, neck, fatigue, ankles, knees, my right arm, dizziness, tachycardia, depression.  Day twelve Chronicle: Complete. 
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Humpty Dumpty

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Shoulders, wrists, back, knees, ankles, neck, jaw, briefly popped a rib out, fatigue, nausea, irritability, dizziness, tachycardia, headache, anxiety, depression.  Tried to go upstairs to get my fan my husband took up there and my knee went out on the way back down and I fell the rest of the way down. Really hurt my arm. Husband was worried it was broken but I don't think so. He's not convincing me to go to the hospital just yet anyway. All the cuts quit bleeding anyway.  Day eleven Chronicle: Complete. 
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Unbearable

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No sleep.  Woke up with my left shoulder dislocated. In the dream I woke up from it was dislocated so that explains that.  Wasn't able to sleep until nearly 4 am. My shoulders, back, knees, jaw, and hips are bad today.  Headache.  Orthostatic intolerance.  Dizziness.  Fatigue.  Lots of nausea.  Been like two weeks since I showered.  Ate some chips earlier.  Don't have clean clothes.  No matter how much tylenol I take it doesn't help.  Day ten Chronicle: Complete. 
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