ADA, Adult, adulthood, Adulting, Broken Rods, BrokenRods, collagen, College, Connective Tissue, ConnectiveTissue, Deformity, disabilities, disabled, Disableds, disorder, disorders, dreams, EDS, Ehlers Danlos, Ehlers Danlos Syndrome, EhlersDanlos, EhlersDanlosSyndrome, Kyphosis, Love, Medicaid, medical, Physical Disabilities, rare disabilities, rare disorders, rareDisabilities, rareDisorders, Relationship, Scoliosis, sick, sickness, Special Needs, Spinal Deformity, Spinal Fusions, SpinalDeformity, SpinalFusions, Spine, Spoonie, Spoonies, Syndromes, Uncategorized, Zebra, Zebras

Disability Journey: Broken rods again..What does it mean?

As we know, my rods are broken once again, but until Dr. Kelly receives my Xrays from OGH and I hear back from him and go to my appointment in Septemeber, we do not know what will happen. Will I have another surgery? More than likely- I mean my rods can’t stay broken. What does that mean?  Well, more than likely it means another surgery, recovery all over again, push back college again, postpone the wedding again, having to raise money or apply for hardship case again since St Louis Barnes Jewish doesn’t take out of state Medicaid, and the talks of David and I starting a Food truck business will also be put on the backburner. 

I am tired of the rods breaking; this is the 2nd time! Maybe I should just put myself in a plastic bubble or “ground myself” permanently into a wheelchair and say “Fuck walking” – maybe I won’t injure myself, since I can’t seem to not be a klutz. I don’t know what the answer is. 

I am just dreading it. Dreading facing my parents about it, dreading facing doctor kelly about it, I know accidents happen, but I feel like I am a disappointment and let everyone down even though I did everything right this time: I didn’t get on inflatables again (I learned my lesson from last time), I was cautious when picking up on my niece or stuff, I was cautious and didn’t bend- instead I squatted or got on my hands and knees,) and yet, I still broke my rods. I wonder if my Ehlers Danlos has something to do with it? Hmm. Guess that’s a question for when I do see that EDS genetics doctor. 

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s