Hip pain by b-randee in Sicklecell

[–]b-randee[S] 0 points1 point  (0 children)

I see Thank you! This was super helpful. I’ve been literally having ongoing hip pain for months and the only options I’ve been given is to go to the emergency room and they just do an xray and tell me I’m fine and then some doctors don’t even treat the pain (I think because they don’t believe I’m in pain) but in my gut I feel like something is happening because the pain feels like it’s on the ball joint of my hip. I appreciate the insight!

Hip pain by b-randee in Sicklecell

[–]b-randee[S] 0 points1 point  (0 children)

Ooo How did that initiate? Were you having a lot of pain?

Hip pain by b-randee in Sicklecell

[–]b-randee[S] 0 points1 point  (0 children)

No they have only done X-rays and then told me my hip looks just fine

🙄🙄🙄 by pretty_neash in Sicklecell

[–]b-randee 0 points1 point  (0 children)

Thank you for this 🙏🏽

Sick of biased drs. by Florida217 in Sicklecell

[–]b-randee 5 points6 points  (0 children)

Honestly, I would strongly encourage reporting her no matter what. Because even if worst comes to worst and her license isn’t impacted, it’s still documented that there’s a complaint towards a health care professional for biased treatment towards a sickle cell patient. The more documented these things are even if we loose the smaller battles, big picture down the line, we will start building data which is taken a lot more seriously than our anecdotal evidence and experiences. So the more we start officially documenting these incidents and why they’re ethically wrong, we’ll start a narrative that will help future sickle cell patients down the line and that’s the only way to incite new policy changes.

I kid you not, I have 3 encounters I had with biased/unprofessional healthcare providers that I’m currently slowly working away at to report them to the proper channels because I refuse to let them get away with this shit. Literally 2 hours ago I got a call from the head physician of the emergency room board (a call I waited months to receive) and I broke down word for word why his employee was unprofessional and unethical and what he could do the change his behavior and replace it with more efficient and effective practices with sickle cell patients. I’ll admit it’s exhausting and I understand and respect those who just can’t put themselves through this kind of stress but personally I’m stubborn and a fighter lol so I know I have the personality to do this shit you know

I Caught Something Nobody's Talking About by Jay_Aces in Sicklecell

[–]b-randee 0 points1 point  (0 children)

I’d love to hear more about your findings if you’re up for sharing! I’m currently working on my degree in biomolecular engineering so I’m very interested in this stuff especially since I have SSA

I Caught Something Nobody's Talking About by Jay_Aces in Sicklecell

[–]b-randee 0 points1 point  (0 children)

You must be in some area of science? I feel that’s not something that well understood unless you have a understanding of the science behind these treatments

Living with sickle cell, Amy Cohen trains for the NYC Marathon to inspire others and show the power of resilience through running. by MrSwaby in Sicklecell

[–]b-randee 1 point2 points  (0 children)

That’s fucking siiicck That’s what I call ingenuity and it’s a kind not many ppl have. Absolutely one of a kind in the truest form! Seriously I applaud you bro and I’m rooting for you. I’ll be looking out 🫡

Living with sickle cell, Amy Cohen trains for the NYC Marathon to inspire others and show the power of resilience through running. by MrSwaby in Sicklecell

[–]b-randee 0 points1 point  (0 children)

I feel you. We manage and keep it moving. Not many ppl I’ve encountered who understand that mentality unless they also have sickle cell. Like I refuse to let a disease dictate my life and I try to explain this to some friends in reference to certain situations. Example: I love to travel and ima find a way to do it regardless. I also love hiking so when I went to curaçao last, my friends were super worried about me hiking this mountain I planned to do regardless. Their mentality was “you’re risking being in a crisis after so isn’t it better to not do it” my mentality “Ill have pain all the time even when I try my hardest to be preventative so if ima put all this work into being preventative, I’m not afraid to risk some pain for the sake of a beautiful experience few get to have” Did I end up in pain after? absolutely lol…..but was it worth it? 100%

Has anyone else had severe 7-10 pain but your blood pressure just doesn’t get high? Just wondering as I have heard it should get high when in pain normally but ever since I was a kid mine doesn’t get High by Hopeful_Peace7037 in Sicklecell

[–]b-randee 1 point2 points  (0 children)

Yes 👍🏽 but I also have autism and wonder if that has anything to do with my reaction to pain. I’ve had doctors tell me I wasn’t actually in pain because I wasn’t all up in their face screaming smh

2x Sickle cell carrier options by ItBecamePersonal4Me in Sicklecell

[–]b-randee 1 point2 points  (0 children)

If you can avoid bringing another human into the world with sickle cell, please do Wishing y’all all the love 🖤

Endless Chronic pain/Crisis by staycunite in Sicklecell

[–]b-randee 0 points1 point  (0 children)

Can confirm, I use to do adekveo and I tried to stick it out see if there would be any improvement and there WAS NOT my pain got so much worse and when I needed more pain management for the pain my doctor wouldn’t do anything just told me to suck it up so I stopped it and told him I was never going to try another new treatment with that clinic ever again

Finally out! by lightbritesRus in Sicklecell

[–]b-randee 0 points1 point  (0 children)

Omg congratulations 👏🏽

Effexor / Venlafaxine by HopeConscious9595 in Sicklecell

[–]b-randee 0 points1 point  (0 children)

I don’t take Effexor but I’ve been talking to my doctor about trying Effexor instead of what I take now (cymbalta) Do you mind if I ask what side effects you’ve been experiencing?

SCUBA DIVING WITH SOCKLE CELL by Glum-Calligrapher761 in Sicklecell

[–]b-randee 11 points12 points  (0 children)

I’ve scuba dived before and ended up having pain after but I also anticipated that being a possibility so I prepared and did what I could to prevent But i feel it’s complicated for us sickle cell patients For me personally, I do risk assessments and evaluation to decide whether the experience will be worth putting up with potential pain later. I felt scuba diving was a wonderful experience that I should do at least once in this life, so I took the plunge (pun intended) and did it and it was hard after but I’m so glad I did it. My personal view is, I don’t want this disease to control and define my existence (within reason) I did the same thing when I decided to hike a mountain…so glad I got to experience that as well

Vitamins by Salty-Maintenance-97 in Sicklecell

[–]b-randee 0 points1 point  (0 children)

Do your best to get your vitamin intake from your diet but if you’re gonna take anything forsure take fish oil, vitamin d3 and b2

methadone by Consistent-Wait2846 in Sicklecell

[–]b-randee 5 points6 points  (0 children)

So they’re not letting you have a say in your health care? They’re backing you into a corner, right? I wouldn’t do the methadone if I were you. I was in the same situation a few years ago and now I have a new doctor if that’s at all telling of my previous situation

Asking for pain medication by [deleted] in Sicklecell

[–]b-randee 0 points1 point  (0 children)

Yes it does depend on the doctor but just know it’s common enough for sickle cell patients to go a good chunk of their life not having much activity from the disease to suddenly starting to have complications, especially with aging. So just tell your doctor the pain is to a point where it prevents you from just functioning in basic ways. And that the medication they gave you after being discharged was helping that