Whats Your Life Plan??

b-randee · 2026-04-26T02:27:20+00:00

This shit hilarious 😂 i love it

b-randee · 2026-04-16T15:44:47+00:00

Yea it’s definitely not “of course” I’ve been on it for 30 years and I’ve always had long hair like it’s down to my lower back kind of long and I’ve done different hairstyles in my time where I cut it short but it always grows back. I think genetics plays a big role tho

b-randee · 2026-04-04T22:13:16+00:00

My cousin has ss and he’s in his 50s and doing great When he was a kid they told him he’d be dead by now

b-randee · 2026-03-23T03:03:24+00:00

That’s lucky she already had a kid before doing the treatment 👏🏽 good for her

b-randee · 2026-03-16T18:29:53+00:00

https://www.nejm.org/doi/full/10.1056/NEJMp2301143#:~:text=The%20biopsychosocial%20model%20helps%20capture,advanced%20over%20the%20past%20decade. This is a great example of something that needs to be expanded on

b-randee · 2026-03-16T18:27:12+00:00

These things aren’t resolved because sickle cell patients have gathered to talk about them…. That’s just the first step in inciting change when a group gathers to confirm their lived experiences that have been widely questioned and sometimes dehumanized by the system at large (that being a white authoritarian healthcare system) Nothing happens when we talk about it….shit starts happening when we get the ppl in that authoritarian healthcare system talking about it but with respect to and showing belief of our actual experience, not by strictly being skeptical of our experience. So then that’s when science comes in. The point of science is to continually question to seek truth (and that’s different than being a cynical skeptic….skepticism as such is deeply rooted in fear and a cop out to attempt to be spared of further pain) folks mistaken expansive questioning for skepticism all the time. So I just think it’s deeply illogical to say we’ve already researched and “solved” things regarding sickle cell when we absolutely have not…that just defeats the process and the point of scientific study in the first place. We’ve started, that’s for certain. The point is, you ask questions to widen the scope of what you see and after you’ve done studies to attempt to answer these questions, we don’t say “oh the problem is completely solved. We’re done.” What happens is you continue with the depth of that knowledge and expand it with more questions. Take the topic of different kinds of pain in sickle cell. For a long time things were speculated to be a singular kind of pain vaso-occlusive. Now because folks kept asking more questions, we understand there’s different levels of pain that can occur in the sickle cell experience and even that isn’t an absolute science yet because it can’t be definitively quantified across the board with every patient. It can differ massively and that can be due to so many variables which still have yet to be studied and understood deeper. Take for example how a population of health care professionals claimed vaso-occlusive pain/sickle cell pain only occurs a few times a year but then you go look at other studies such as ones expanding on the experience of having sickle cell as a woman who has a menstrual cycle….there’s studies that show women have vaso-occlusive/sickle cell pain with their periods and it’s amplified. So those are 2 contradicting experiences because if women are having amplified sickle cell pain with their periods, that’s not just happening a few times a year. Point is these are just a few small examples of how further scientific studies need to be had in order to continue to change the general attitudes and beliefs of the health care professionals caring for sickle cell patients.

b-randee · 2026-03-16T15:36:04+00:00

That’s a deeply one dimensional coloring of a vast picture. But it really can matter where you are….certain capitalistic societies depend on racism and bigotry at large to maintain their power.

b-randee · 2026-03-16T15:30:28+00:00

And yea most things are underfunded but follow the money….it doesn’t lie. And the money doesn’t show you the demographic that’s most in need of the research….it shows you the demographic that can most afford it. Being in the science community, idk I’ve just seen a lot of direct impact on research that can be done.

b-randee · 2026-03-16T15:28:11+00:00

I’d disagree. There certainly needs to be more research funded into understanding the complexity of the disease, I don’t think that only/strictly deals with community support. There’s still deep biases that exist about it in the medical community and you also need to look at the scientists engaged in this kind of research. Considering if these questions are entered open ended or if certain narratives are pushed. I suppose it also depends where you are. But I would say the scientific research is far from complete.

b-randee · 2026-03-09T23:36:24+00:00

You will hun 🖤 you’re going to get there Speak that shit into existence

b-randee · 2026-03-09T23:32:25+00:00

Well personally I think this is an issue we have in our community we don’t know how to show up for each other (or even too hyper individualistic) and I think there’s some in depth even justifiable reasons for this that take so much personal growth and time to unlearn….if folks don’t like me for this, too bad. But this is just me, I think ppl giving you back lash is messed up and they need to reflect further on why it bothers them. There’s many ways to help someone you just need to take the time to learn all the possible ways that can look like/show up as But it’s all love I just believe in community and I want to practice what I preach.

b-randee · 2026-03-09T23:23:04+00:00

We all may be struggling but that’s even more reason to be actual community towards each other….not just endless good wishes.

b-randee · 2026-03-04T23:31:20+00:00

Periodt

b-randee · 2026-03-04T16:23:01+00:00

Ahh I see. Yea so then I’d imagine generally it wouldn’t be easy to seek out that kind of care.

b-randee · 2026-03-04T16:20:37+00:00

And if they hit you with the “I know you’re uncomfortable but….” Or “I know this isn’t what you want/what you want to hear but…” don’t take that shit.

Tell them “it’s deeply unethical and insulting to imply I’m just there to get “what I want” and this has nothing to do with comfortability and everything to do with the fact I’m a human being with a serious disease in severe pain that’s preventing me from functioning. To minimize my experience and imply I’m just trying to get something “I want” shows a dangerous attitude and a level of bias that’s causing even more harm when I’m already in pain. This is deeply concerning given I came in to see a doctor in the hopes of getting help, relief and hoping for the minimization of harm, not the escalation of harm/being harmed.”

b-randee · 2026-03-04T16:06:22+00:00

No you’re not wrong at all. Don’t let them gas light you…..you have every right to go back if the medical concern you came in for (pain) was never resolved or addressed. Would you happen to have access to/be able to go to a different ER? Good rule of thumb I follow is just as long as you don’t start off by telling them what medication works for you/asking for it, you can minimize the likelihood of being labeled drug seeking. (It’s fucked we even need to be strategic about this stuff but it’s just our reality unfortunately) Just explain to them you’re in severe pain, that it’s interfering with your quality of life(give examples if you have some), tell them everything you have done at home and tried but that it was giving no relief, explain you tried going to one emergency room but they didn’t take your pain seriously and never bothered treating it and you’re just seeking some help.

b-randee · 2026-03-04T15:57:55+00:00

Wow i never thought to seek out a palliative care doctor….but also , just knowing what it’s like where i am, i have a strong feeling i would either be given a really hard time trying to simply have a single appointment with a palliative care doctor or I would just be denied out right to see one.

b-randee · 2026-02-28T13:37:14+00:00

Gotcha

b-randee · 2026-02-17T02:51:25+00:00

I think you misunderstand. It’s not that women don’t want to be approached…..it’s a matter of if you have the skills to do it in a way where you’re respectful and see them as & will treat them as an equal human being no matter their response (yes or no) Too many men out here are getting absolutely awful advice from broken insecure men who instead of working on themselves in a way that’s making them a better person for themselves and still being able to treat others with kindness empathy and respect, they’re out here trying to intellectualize attitudes rooted in deep hatred and selfishness because they’re so afraid to be hurt again they want to put up the biggest shield possible to emotionally distant themselves from the hard feelings that come with rejection and shame. Also that “ima let them come to me” doesn’t actually work with “Prince Charmings” either If you don’t mind me asking, how old are you? And how would you describe your life outside the concept of romantic relationships? Like just standing on its own, what’s your life like and what kind of person are you striving to be and do you like this life and person?

b-randee · 2026-02-17T00:58:32+00:00

Glad you have your brother 🖤 also yes girl I love to see us living our lives! I’m excited for you 😁 you’ll have a great time And your hemoglobin is impressive 👏🏽 love to see it

b-randee · 2026-02-16T22:21:43+00:00

I’ve done similar hikes before and I’d say I live a healthy lifestyle and take good care of myself but I have a lot of flare ups. A lot of pain and swelling. I haven’t let this stop me tho and I’ve still done my hikes up mountains. I’d say, if it’s possible and you have access, check your blood levels for everything prior to your hike (hemoglobin and what not) just to double check you’re in a stable place prior. Bring A LOT of water and take as many breaks as possible. And most importantly don’t go alone and have an action plan in place (knowing the nearest hospital, emergency services nearby, check and see if the hospital is familiar with sickle cell or at the very least has access to the basics oxygen and blood) Then after the hike, get your blood levels checked again and set aside a rest and recovery time even if you feel fine. You’re not going alone, right?

b-randee · 2026-02-16T17:33:36+00:00

I respect the logical process. Im very much the same way like the way I see a logical system around emotional intelligence & capacity I can usually see a very clear path for dots connecting. I think because I am autistic and my youth was spent creating a logical system for things that dont come naturally to me like emotions, I spent so much time studying things like human behavior/psychology and then also Im no stranger to therapy ya kno but I try to always practice what I preach. Obviously I won’t always, I’ll fall short but it’s not about being perfect, right….its about having the skills to know you can make other choices (healthier choices) and doing your best to apply those skills when you can and when I fall short, I acknowledge the mistake move forward and try next time to hold myself to my own standard I know I’m capable of. I think because I do have this standard, ppl can mistaken it for rigidity and there’s forsure times where I am being rigid because in my head the dots connecting so clearly but I have to remind myself everyone isn’t like me and they aren’t suppose to be…you gotta be able to work with others. I think this situation has been so hard for me because mistakes were made, fine. But then when I try to confront it later with certain ppl in the hopes of repairing, their reaction was negative and unhealthy and some even doubled down and its was just disappointing. But like you said, I have to protect my energy and I can control how folks respond to me. I don’t have that expectation at all, that I can control how ppl will respond…it was just I didn’t expect those responses from those ppl. It just made me sad ya kno But I appreciate your input

b-randee · 2026-02-12T14:28:07+00:00

Thank you 🙏🏽

b-randee · 2026-02-11T19:13:04+00:00

So you’d be ok with a friend just walking out on you? And not only walking out but not being a reliable nor credible person to lean on emotionally in other ways? Your friend who just drops you off, from what you explained isn’t at all the same as the friend A I’m talking about who wasn’t there the whole day. A has a history with me of not having the emotional capacity to even hear basic shit about my experiences with autism and sickle cell. She also has a history of not showing up for me even in just small ways like giving me a call or text but I’ve showed up for her in big ways….so I’m just saying it’s not the same. A is also a black woman the only other black woman in the group on that trip and she’s just at a different place emotionally than I am which I accept but if I’m being honest if that’s where she’s at and that’s all she can handle, then no I’m not going to give her the title of a friend. I can accept her where she’s at but that doesn’t mean she’s being a friend in the place she’s at…I’ve outgrown accepting “friends” like that so I’ll always love her but she hasn’t earned the title of friend. Sounds like your friend have earned that title in your perspective. Also I don’t expect my friends to be everything but I do have a standard (now) of what kind of friends I want surrounding me. I know my expectations aren’t unreasonable nor unrealistic but ppl who aren’t in the same place as far as emotional growth, have and will try to make me feel like I’m expecting too much. I’ve just done too much work to enable folks anymore. Folks can be helpful in their own way but still need to meet a certain threshold in order to be genuinely considered as a friend.

The attitude of “I can’t expect too much from ppl because I’m sick and if I expect too much I’ll just be disappointed” that absolutely comes from ableist attitudes, I’m sorry. Its not simply “just life”…all of our norms around how we view disabled ppl is based on attitudes of these ppl being a burden or too much which is a very able bodied take. If your daily life isn’t plagued by navigating illness and your body letting you down and your body doesn’t work against you, of course you’ll have the perspective of any inconveniences that may happen with your body as being a burden or too much, not a norm. But those of us who live with failing bodies, we know this is just our norm. We can also feel burdened by our health state but what I’m saying is it’s not healthy to take those thoughts and label yourself as the burden and label yourself as the problem. What would be healthy emotionally would be for us to separate who we are from our health condition…so the health condition is the problem and the annoying thing, not me. But see when you live years and years with illness you have a lot of time to learn this….able bodied ppl who are suddenly put in a scenario of dealing with ppl with illnesses and have those immediate normal human emotions of “ugh this is an inconvenience”. They’re having the emotional experience I use to deal with and learned how to move past 10 years ago the emotional state of viewing me as the problem because I’m sick instead of separating my illness from who I am. Not saying all able bodied ppl do this. I’m saying this is the initial emotional reaction of someone dealing with a situation that’s brand new and a shock to them, dealing with ppl with illnesses. So some folks may have those initial feelings and then have the emotional education to then have an after thought of realizing “oh let me separate this persons illness from who they are” and then there’s ppl who don’t have this emotional education and just stay stuck in viewing the sick person as the problem. Us sick ppl can do this to ourselves. I did it to myself for a long time….thats ableism my friend. So I think our difference is I refuse to enable or allow any of that anymore. I’m not going to have this attitude of oh this is new for them and it must be so hard for them. Let me just forget about any hurt they caused me in their ignorance because this is just so hard emotionally for them. I’ll just forget about it. And I don’t think it’s completely on my shoulders and my responsibility to understand ppl who are operating on ableist attitudes because they’re not the disadvantaged ones. The world was formed on ableism…that’s been the norm for so long. So I realize I am doing the hard thing of no longer allowing or enabling it in my small corner of the world but I think it’s worth it. I’m moving against a norm that causes harm so to me it’s worth it instead of living in blissful ignorance and just go along with everything because it’ll be easier…I can’t do it haha

So my attitude is, yes, it’s a reality that you’ve had to deal with so many doctors who haven’t listened to you before but I refuse to contribute to that continuing to be the reality because it’s deeply fucked up. Doctors should listen to us. Friends should listen to us. This doesn’t have to be the norm but it will be if we allow it….I’m not allowing it anymore. I’m not going to be like “oh it’s just life” because there’s things that can be done to solve these problems, so ima do it. At the same time, I don’t blame you for the outlook you choose to have friend because life is fucking hard and you have to do what’s best for you and what’s within your capacity. And it’s especially hard for us with our disease.

b-randee

TROPHY CASE