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Showing posts with the label dysautonomia

The Poverty of Unwelcome Guests

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It is a little frustrating, but it isn’t necessarily the fault of others, for they are not clued in.Things are tough all around. We each have our own battles that we greet in the morning and see again in our dreams. One’s challenge may be someone else’s strength. We can bring our resources together, both physically tangible, as well as those traditions that are passed on, but only by word of mouth.  Next week I have my surgical consultation. You see, I have a growth, about an inch in size, that is currently growing on my uterus. It is an unwelcome guest, and one that must be evicted. It looks like I will be having a hysteroscopy or hysterectomy, with the latter one hopefully leaving my ovaries for better hormone regulation. Both of these require quite a bit of rest, which is one thing I have struggled with for much of my life. It’s not that I feel like I keep busy to avoid sitting with my feelings. Trust me on that one. But rather, it comes from a place of guilt. Our society has br...

When the Denial Isn't Yours: SSDI

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My experience in pursuing my disability approval has been one that has made me sink to one of the lowest moments in my life. After getting my first denial for disability, it gutted me. But, this second time, it crushed me, while at the same time, made me want to fight for all of the other people who have experienced the same or similar treatment by the powers that be. When the government says you aren’t disabled, but you have all of the doctor's notes, lab results, and hell, even a genetic test that revealed a mutation in my collagen that is associated with Ehlers Danlos Syndrome, it becomes such a mindfuck. It is as if the government says you don’t have a right to be alive, since, in their view, I am just a lazy sack of crap who just chooses not to work. When, in reality, my body is slowly falling apart, my shoulders and hips pop out of place if I move sometimes, my core temperature drops often, with my hands being 60-70 degrees (about 20 degrees cooler than they should b...