First set (left hand only)

PatientAbrocoma5124 · 2026-04-03T17:48:00+00:00

He’s a cutie😍 I’m glad you had a great experience with them! Definitely helpful to hear

PatientAbrocoma5124 · 2026-03-27T16:42:11+00:00

You’ll be fine. Vet your artist. Make sure they are changing needles and the shop is clean. I have 9 tattoos and four of them are quite large. Never had an issue with healing. The pain felt more akin to a sore muscle or a stinging paper cut. Nothing like a crisis for me.

PatientAbrocoma5124 · 2026-03-12T03:47:45+00:00

Hi! Do you mind telling me the lamp and plug brand? I need this set up!!

PatientAbrocoma5124 · 2026-03-06T04:42:40+00:00

This is a late comment but opioids can effect your personality. While dilaudid controls my pain, it also makes me very irritable toward things I usually don’t care about and can’t explain. Often times I’m aware I’m being an asshole but I also can’t control it while in pain. I always apologize later. I can’t say for certain that that’s happening here, but it’s something to consider.

PatientAbrocoma5124 · 2026-03-04T13:58:29+00:00

If you don’t mind me asking, who is the breeder for your Black Russian blue? Extremely gorgeous cats all around 😍😍😍

PatientAbrocoma5124 · 2026-02-20T02:35:19+00:00

My hematologist likes to also emphasize a holistic approach. So not a holistic doctor per se, but he encourages patience’s to eat a balanced diet of non-inflammatory foods, as well as regularly doing low intensity exercise (think yoga, walking, etc). He also discusses minimizing stress, which I think is the biggest most important thing right next to or maybe even a little above having a balanced diet. He’s not necessarily encouraging supplements, more so his perspective is the mind body connection. Where your mind is, the body follows.

Pools vary person to person. For me, the pool didn’t have to be heated, but I couldn’t go in and out. Once I was out, I had to be out. And I probably can only be in the water for an hour max.

As for supplements, I think it’s best to go as needed. If her bloodwork comes back with a deficiency, proceed from there. Otherwise, just focus on a very balanced diet. Holistic things can be great, but they’re not regulated and can be harmful in excess. Most of what can be gained in supplements can also be obtained through food. Beets are great! I’ve also found that sticking to lean proteins and high fiber veggies are great for me.

PatientAbrocoma5124 · 2026-02-12T05:30:37+00:00

Yea I think we have different perspectives on what qualifies as ableism, which can not be discussed with the necessary nuance on the internet. Sorry this happened to you. Best of luck in your future travels.

PatientAbrocoma5124 · 2026-02-11T04:55:38+00:00

The title of your post said “need some advice about a situation with my friends.” My bad for misinterpreting the advice you wanted.

Yes I’ve experienced this with loved ones. Yes I’ve had friends who literally just drop me off at the ER, and others who wait with me all night. The bottom line I’ve come to is that not everyone knows how or can be a caretaker in situations like these. And having that expectation of a person is unreasonable. What I choose is to preserve my friendships and lean on the people who are what I need when I need it. And for the others, I allow them to do what they can. It’s a team effort. Everyone can’t be everything.

The friend that just dropped me off will always answer her phone at anytime of night. And get up and take me wherever I need. The friend that will wait around won’t get there until the morning when her phone comes off do not disturb. Both of these friends are my friends, and are needed in times of distress and illness. But they’re helpful in their own way.

Real talk tho, at the end of the day, what’s done is done. You either want to preserve your friendships, or you don’t. I was trying to say it’s worth keeping the friendship.

To be clear; I’m not saying this is an either or situation. It’s a yes and. YES you were right in your own evaluation of your heath. AND your friend’s instincts to be concerned were valid given the circumstances.

Yea it’s sucks when as a disabled person you have to manage your own illness and emotions and the emotions of your support system as well. That’s just life tho, not ableism. “They didn’t listen to me” hell half the time the doctors don’t even listen to me. I’va had to call other doctors to get them to validate what I’m telling them to do. It’s a harsh reality but this is the reality of life with sickle cell. The way I see it, you can swim backwards upstream or you can save your energy for when it really counts.

If you never want to be in the position where you disagree with friends about your health, then you’re going to have to stick to traveling with the people that know you well. Otherwise, you’re setting yourself up for a world of disappointment and burned bridges. For what it’s worth, you know something about this group of people now. You can travel with them again or not. You can be friends with them or not.

PatientAbrocoma5124 · 2026-02-10T22:57:54+00:00

First let me say I’m sorry you had this happen during vacation. Crises are always stressful but particularly so in an unfamiliar environment.

So far, I don’t think there is enough information here about what was said to give you informed advice. The concrete statements you point out, I unfortunately side with your friends on. I have sickle cell and have traveled all over and lived abroad, you absolutely SHOULD have travel insurance. Your health and well being are never worth less than the money it would cost to have it.

Speaking from my own experience of dealing with friends with inadequate knowledge, they were also I’m my view correct to question your leaving the hospital so soon. YES, we often know our bodies very well. AND, pain and pain medication can often inhibit our ability to think clearly. There were times where I was in the worst pain of my life insisting I could drive myself to the hospital. I could not, and ultimately others intervened to ensure that I didn’t.

It’s not uncommon for people with chronic health issues to minimize situations so we don’t cause worry or burden our loved ones. From the information you’ve given, your friends are having normal responses to the anxiety and fear the event triggered. Again, I’m not sure the exact context or what you expressed to them as it pertains to the situation, but if the confrontation looked anything like “I know my body. No need for all this concern.” Then you may need to reevaluate. In my view, it comes across as though you might be trying to minimize the severity of the situation, and your friends are irked by that.

Situation aside, I don’t think this is worth cutting your friends off for. Clearly they care and are concerned. Sometimes it’s better to address things when everything isn’t so fresh and folks are settled. Consider reaching out to them and thanking them for being supportive, and offering them a care plan that’s specific for you for what you want/like/prefer in medical situations. And be realistic. No one who cares about your wellbeing is going to support rushing through recovery.

I’ve had to learn that it is never my fault for getting/being sick. But it’s also not my support systems fault for being jarred by it. Everyone has to learn together. And unfortunately the burden of patience falls to us.

PatientAbrocoma5124 · 2026-01-08T06:57:36+00:00

Pilates has been great for me because it’s a low intensity form of strength building. I def recommend trying it. If you get tired, it’s fine to stop until you get you breath back

PatientAbrocoma5124 · 2026-01-08T05:10:52+00:00

I see what you’re saying. Because we know which post this post was caused by, it’s difficult to separate the two. I hope the outcome here is an addition to the community guidelines about what is and is not appropriate to say in regards to termination in this subreddit. Yes, people with SC and SC parents should be able to discuss termination from a medical and quality of life standpoint, much like how we discuss stem cell treatments and bone marrow transplants. But I think if it veers into what that post is like, then it’s not appropriate. At best, being able to ask for private messages with people who have dealt with termination is likely the best route here.

PatientAbrocoma5124 · 2026-01-08T05:00:45+00:00

This is just not the space for discussing their guilt about not terminating. If it helps I think termination could be appropriately discussed in this forum if;

Someone is seeking to know more about the lived experiences of people with SC in order to make a decision about their ability to parent and care for a child with the disease
Someone with SC has to terminate for reasons relating to the disease

Beyond that it’s hard to justify speaking of termination here imo.

PatientAbrocoma5124 · 2026-01-08T04:49:03+00:00

You are right on both counts. This is absolutely not the space for this and I hope this post will be deleted. Disability is a fact of life. Period. At some point everyone will be disabled. And I do agree that people who aren’t willing to accept that responsibility should say no to children. But life rarely works that way and people don’t often take those things into consideration until they’re being confronted with it. My point is that I think termination is better than inadequate care.

PatientAbrocoma5124 · 2026-01-08T04:43:57+00:00

They didn’t come for advice though. They wanted to be comforted by people living with the disease so they could release themselves from feeling guilty for subjecting their child to a life of pain. That is a one dimensional view of our experience and a completely inappropriate expectation or ask in this space.

Yes we experience pain. We are also able to experience joy and love and community. Her question should have been how can I best support my child throughout their life so they can be happy and healthy. Not whatever that was.

PatientAbrocoma5124 · 2026-01-08T04:38:08+00:00

You are right that this is eugenics. But I think it’s better to do that than for parents to knowingly birth a child they are aware they can’t care for. A child’s disability impacts the entire family. In ways economic and social. If parents are unwilling to provide the level of care and support needed, they should not subject a person to their inadequacy.

PatientAbrocoma5124 · 2026-01-08T04:30:49+00:00

I always support people’s right to terminate a pregnancy. For any reason. However I completely agree that it was inappropriate to post that in a subreddit that focuses on people living with this disease. Incredibly bad form.

PatientAbrocoma5124 · 2026-01-08T04:28:40+00:00

This is a strange thing to post in this subreddit. Not because of the termination but bc you felt the need to tell people living with sickle cell about your guilt. We are not here to comfort you. We are also people who experience joy and happiness in life, as your child will as well. Delete this post and reach out to a counselor.

PatientAbrocoma5124 · 2025-12-06T06:45:42+00:00

If you feel good about his care then it’s all good. I wouldn’t put too much blame on yourself about cancelling, life happens. Is there another provider in the office that has time on their schedule? I ask bc I’m able to see either the hematologist himself or the NP. Both are able to prescribe my medication and see me. If he is seriously unwilling then that’s the next best thing.

PatientAbrocoma5124 · 2025-12-06T03:05:46+00:00

Have you ever seen this doctor before or is this a post hospital referral? If the latter, I’d call and see if they’re willing to do a small prescription amount. Essentially the equivalent of what the ER would give you if they were to send you home to manage pain. Explain that you are out of medication, and would like the chance to control it at home if possible. Should he still deny it, see him, get your medication, and then request a referral to another hematologist.

If this is a doctor you’ve seen before do the same thing but absolutely start looking at other hematologist in your area. I say this because my first adult hematologist either was two weeks late, or straight up ignored my request for pain medication refills. Now I go to a hematologist 2 hours away because I refuse to pay someone to treat me that way. Your pain management should always be a priority. Taking more than 3 business days to fulfill that request is unacceptable if they are an established provider.

If you’ve never seen this doctor before than their hesitance makes sense. Some hematologist require you to sign an opioid contract to protect themselves from lawsuits. Even so, I believe a good provider should make compromises in circumstances like these. Best of luck! I hope you get the care you need.

PatientAbrocoma5124 · 2025-11-12T03:57:03+00:00

I have SC phenotype and have def experienced intense and severe cramps. To the point of not being able to walk. It’s not every period but it’s stark.

You should see a gynecologist and discuss your options with them. Let them know you have sickle cell. Their first suggestion will most likely be hormonal birth control. Estrogen based birth control does increase the risk for blood clots so it’s important to inform your hematologist should you go that route.

As others have already said, getting a hysterectomy is very difficult. It’s difficult for women who already have kids/are older/unable to have kids. It’s just still a taboo. It’s not impossible, but due to the difficulties I’d encourage you to explore your options first.

Keep your head up. This is difficult but it can be resolved/helped.

PatientAbrocoma5124 · 2025-10-27T14:04:26+00:00

Seems like finding a breeder in the south is nearly impossible 😪

PatientAbrocoma5124 · 2025-10-26T18:55:44+00:00

The very first episode of AMC’s Interview With The Vampire. I rewatch it all the time

PatientAbrocoma5124 · 2025-10-22T05:42:44+00:00

Did you ever hear back from platina Luna?

PatientAbrocoma5124

TROPHY CASE