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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More from @IronTrickGaming

15 Jun
Hey #CPP fam! Have any of you ever felt blackmailed or coerced into talking medication just to get your pain meds? Details will follow in the enclosed thread. 1/?
I’m currently #inpatient for a #SickleCellCrisis and the morning attending talked with me in front of the nurse that instead of getting pain meds every two hours, It would be every three hours, but I would get some breakthrough doses so my pain doesn’t spiral out of control.
However, every time I asked for a dose, the orders weren’t in the system. So I’ve been fighting for these extra doses ALL DAY LONG! I could tell that the nurse felt bad about it too. At shift change the orders STILL AREN’T IN THE COMPUTER! 😡🤬😤
Read 6 tweets
13 Jun
Hey #CPP fam! Can someone please point me to the right direction? I’m currently inpatient due to a #SickleCellCrisis and I usually get IV Benadryl because I’m severely allergic to CHG and adhesive tapes. However the docs are only giving me oral meds which just isn’t working.
The allergic reaction I get is that my skin blisters with extremely intense itching to the point that it causes pain. The blisters are delicate and pop open with the slightest touch, even when rubbing against clothing and eventually everything scabs up.
I have photo documentation of the allergy, and the doctor is still refusing to give me IV Benadryl, citing protocol and hospital policy. My arms are scarred up from the last time this happened when I was admitted here. I called patient services and left a message.
Read 6 tweets
14 Oct 20
Dear #MedTwitter, you need a be more aware of the after effects of #MedTrauma. Intense research or questioning/constant second opinions doesn’t always mean hypochondria. Maybe someone was misdiagnosed one too many times which led to too many life threatening situations.
Constant over-explaining doesn’t mean that they’re trying to make up a story. Maybe they just want to make sure that you have all the details to avoid misdiagnosis. Maybe they just want to make sure that you BELIEVE THEM.
These are just a few examples, but PTSD due to #MedTrauma is real and it greatly impacts people with chronic illnesses. I know because I have it myself. My last few health crises I diagnosed myself because I was constantly being misdiagnosed which even put my life at risk.
Read 22 tweets
14 Oct 20
I’ll say it AGAIN for the people in the back... I DON’T WANT A “CURE” FOR #SICKLECELLDISEASE! What I DO want is for our pain to be TREATED NOT IGNORED. I DON’T want to worry about the ER docs labelling me as a drug seeker out of IGNORANCE/BIGOTRY. 1/?
When I come to the ER, I want to be BELIEVED when I say I’m having crisis pain. Followed by PROMPT AND EMERGENT administration of the dose of pain medication I NEED! Sickle Cell crises are an #ActualEMERGENCY and require immediate treatment! More time in pain = MORE COMPLICATIONS
The longer someone is in pain without relief, the more likely they’ll need an admission into the hospital! Also, pain scales are garbage! Personally I measure my pain by my ability to function. If I’m in the ER, I’m not functioning!
Read 13 tweets

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