I feel like I keep doing things I think are going to help and instead things get worse.

I feel like my life is a constant shit storm. I feel like things are never going to get better, no matter what I do. It’s maddening

I thought things would get better if I went back on Medicaid so that my medical expenses wouldn’t be $10k+ a year anymore. But getting back on Medicaid didn’t help. My body is doing the rapidly-falling-to-pieces-in-midlife (I’m 38) thing that Ehlers-Danlos causes and Medicaid doesn’t give me access to the care that I need.

My local email list for a support group for Ehlers-Danlos people is full of folks who talk about traveling all over the damn country to see specialists they pay for out of pocket. None of the people on the email list work (none can), so the cost of seeing these out-of-state specialists is covered by their spouse’s income or other relatives. 

Most of the Ehlers-Danlos-specific doctors don’t take insurance and those that do mostly don’t take Medicaid and those that take Medicaid aren’t accepting new patients, not even on a waiting list.

I bet it’s nice to be able to see the specific doctors one actually needs.

I just feel fucked, and not in that fulfilling sort of way.

I wish I had more of a life beyond being disabled and all that entails.

At my appointment on December 4th, my doctor moved my weight-lifting limitation from 10 pounds to 5, which means I won’t be able to lift my cat if I follow her instructions. I won’t be able to do my laundry or grocery shopping. I won’t be able to pick up a lot of my mail (I already get all my household needs delivered because I can’t carry them from the store to my car and then from my car to my apartment). Without the obliterative procedure, I will have to maintain the 5 pound limit for the rest of my life to keep from exacerbating the laxity of my Ehlers-Danlos body and thereby causing the prolapses to recur sooner rather than later.

But Medicaid doesn’t consider me disabled “enough” to need assistance such as a personal care attendant or even occasional in-home help. And Social Security “recognizes that the conditions trouble the claimant, but they are not disabling.”

Fucked, fucked, fucked.

From The Personal to The Political: A Thought Process Regarding Worsening Disability And Activism

  1. A Medical Appointment (CN: Mentions of anatomy, medical conditions of sexual and pelvic organs, and medical procedures. No descriptions or details.)
  2. TMI: Sex (CN: Sex, anatomy, gender, psychology. Mentions of sexual trauma without descriptions or details.)
  3. Causation (CN: Mentions of anatomy, medical conditions of sexual organs, medical procedures, and medical trauma/neglect. No descriptions or details.)
    1. 2002: Pelvic pain origins
    2. 2011: Diagnosis and treatment of original injury
    3. 2013: Continued treatment
    4. 2018: Hysterectomy
    5. 2019: Diagnoses related to pelvic pain
  4. Feelings
  5. Developmental Years & Privilege
  6. Trying
    1. The Disability and Sexuality Access Network
    2. We Need Some Fucking Help, Desperately
  7. Asking for Help is Really Damn Complicated
    1. Labor and money are both forms of capital and we’re short on both
    2. Disposability politics
    3. Oppression olympics and privilege
    4. “Capability”
    5. Access as a privilege
    6. Capability as ability and incapability as disability
    7. The movement can make us capable; it can also render us incapable
  8. We Are Nowhere Without The Movement to Support Us