I just want to scream as loud as I can, then cry into my pillow. I’m trying to find a new #SickleCell doctor, but the program I want to go to isn’t accepting new patients.
I don’t feel comfortable enough to go to a private practice so I’m doing the intake for the SCD program at the main campus of the same medical network. Hopefully the medical care will be just a good, but I’m not holding my breath.
I just hope that they’re willing to actually treat my pain instead of twisting it into something where I’m taking all of the blame. Since my current doctor thinks that my pain is somehow my fault like I’m purposefully causing pain crises.
I also can’t deal with the stress of never knowing exactly what my care plan says and that it’s often changed without any input from me. I also can’t take the limits on my hospital admissions. It’s so stressful, never knowing if I CAN be admitted if I need to for pain control.
All that stress only makes my pain THAT MUCH worse. I constantly feel like I have to be on the defensive and justify everything that I ask because I’m rarely ever believed about it. #BelieveSickleCellPatients
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