r/Sicklecell

Its 2 in the morning there is no where I can get immediate treatment

I just began to see a pain care specialist that prescribed me 5 mcg/ hr for CHRONIC PAIN.
how did it work for you?

Recently, I was in the hospital for a week after having a pain crisis during wrestling practice. I’ve since recovered, but I can’t help missing being there. I’m not sure if anyone else with sickle cell can relate, but the hospital feels like a second home to me. I miss the nurses and the feeling of being taken care of. I’m even starting to miss being in pain. It feels strange not to be in pain. I know that isn’t a healthy mindset, especially since I’m going to college soon to wrestle and need to stay healthy.

I’m not really sure what to do.

Hello I just got hired as a cna and the onboarding is next Wednesday.. so a week from now, I have had a sickle cell crisis and took my pain meds before I knew I was hired and now I’m afraid that I will fail the drug test.. I’m not sure what to do, I have gotten documents showing all my medications as well as a note from my hematologist stating that I can work to my full capacity .. can they deny me if my pain meds show on the drug test? What do I do?

So I call archer to get update on my case. Remind yall I told yall about me getting a “Medicare waiver“ email from Keller and attached was a video made from archer showing me how to fill the waiver out. I filled it out the same day which was “JULY 2ND” let me remind u. so it’s been 20days since then. Since then I have contacted both Keller and archer for updates. Same rehearsed responses right. So I ask archer today wats the update on the “MEDICARE WAIVER“ and the lady put me on hold and comes back and says she doesn’t see a wavier on my file. She puts me on hold again to double check and says yes no wavier on file. Tells me to call Keller postman and get them to send them the waiver. So I call Keller and ask the person very specific questions and the person from Keller is damn near half retarded. Keller telling me that they have the wavier uploaded and that everything on file on their end that archer has access to the same files. So they tell me to call archer back to get them to check again. Now I’m mad as fuck because first of all why are both companies telling me to call the other, why aren’t they calling each other to figure out wth is going on. But anyway I call archer back and they still say the same thing. So I’m on their ass now. Archer say they are putting in a inquiry to see what’s going on and that I can call back next week for an update. I told them that this is very concerning and I made them give me a email so I could send in the Medicare waiver directly to them so they have it. THEY JUS CREATED A MONSTER NOW BECAUSE I AM ON THEM LIKE NEVER BEFORE!!! They sitting around playing and not even really in communication with each other frfr. From now on I’m not speaking to none of the first people who pick up the phone. I need to speak to the higher ups now.

My latest test is to improve my veins. Specifically I want easy labs and IVs.

Right now my veins are decent because I heal them from scarring. Takes about six-weeks to take a newly scarred vein back to usability. I shared that remedy here: https://www.reddit.com/r/Sicklecell/comments/1l35prf/whats_working_for_me_right_now_lavender_oil/

That's Great, but recovery is only one part of a three-part task.

Parts 2 and 3 are:

2- Being vascular enough to have bigger veins that are smoother to reach, draw, and/or give fluids.

3- How long a vein can be tapped without being lost to infiltration so I don't need multiple IVs over a single admission.

We've had this conversation before. I noticed many people were doing push ups and bicep curls, which doesn't target forearms. So they weren't' getting the results they wanted.

Now we get to correct that and get smooth wins.

So here's my plan.

Starting today I'm training my forearms. It'll give me many advantages...

One. Bigger arms aesthetically. Great for my ego and my overall weight goals.

Two. Bigger arms mean more blood flow and stronger bigger veins.

Three. Helps with old veins scars too.

Four. Stronger grip strength.

Five. Easier to handle more girls on my arms.

These are the things important to me.

I'll be following Michael Eckert as my main instructor on this. Though training forearms is thousands of years old and there's only a handful of exercises that I need to do for my goals. I dig Eckert is all.

I'll do three exercises for each part of the major forearm muscles. Then I switch the direction of each to get their opposite muscle movement.

I know my right side is weaker overall. I'll start with this side til failure on all movements. Then I'll match those reps with my left side. That way my right side gets stronger. When it matches my left, I'll move forward at the same intensity.

Besides that I'll only exercise when my arms are rested and can handle my routine.

So the biggest part of all this is nutrition and rest.

I need to eat 4000 calories a day to feed the growth, and I need about 8 hours of rest at night for the muscles and tissue to grow.

This is all theory that I've seen get positive results for others. Now I'm testing it on myself and sharing my work.

I'll be DOing this on top of my daily hindu squats, push ups, and miles of walking. Not to mention the adventures I have through life too. We'll see how it goes.

I'll share my progress as I grow.

Stay tuned for more.

I've been posting about my families lack of support to me and there neglect of my help ss well as there one-sided thought process, im in so much pain. It's 6,36 I've been in pain since 3,00 I have no pain meds, my father refuses to let me het say and stopped paying to ensure I couldn't access any im broke in pain and weak, aby ideas

My kids have sickle cell and we can't really afford medication. How can I cope?

So I was just in the hospital this past week and got discharged today, but the whole while I was there I kept telling the doctor that I felt as if she was disregarding my pain and that she wasn’t following my pain plan. Not to mention she hadn’t consulted hematology as she states “they wouldn’t be of any use” so I politely asked for another doctor and she told me “due to new hospital policy we are not allowed to give you a new doctor” and she turned and walked out of the room and put in discharge papers knowing I was still at a 10 level pain. So after she discharged me I went back to the er and let them know the situation I got a couple doses of pain meds in the er and was feeling pretty ok to go home. Now I’m home I have no pain meds and my pain is back up to a 9 I don’t wanna go back bc we all know wha they’ll think of me but then again I kinda don’t have any other choice. What should I do?

Ever since the ones that got an email from archer on June 30th, has anybody other than those people got an email from archer yet. I am so frustrated with this. I am disappointed because it seems as if them telling all of us that payments would go out between “MAY-JULY” was a direct lie for a lot of us and it is an insult!!! I’m sick of the routine summarized responses that they give us when we call and ask for an update. In all actually KELLER & ARCHER WORK FOR US, not the other way around. Excuse my language but I am F word pissed. Keller postman has collected they 40% in my head and sent the rest to archer who will send us our part when ready. And I think that’s just wrong. Because no matter the lien resolutions keller postman is still getting their 40% so I would think they already took theirs out before sending the rest to archer. This is not fair that they will not tell us more than a “SCRIPTED” response to our question. This isn’t a class action lawsuit. They say every case is unique of in itself so why when we call they give ALL OF US the same response. Why can they not break down everything to a T? It has to be some kind of deadline for these Medicare/medicaid/lien people to have a decision by a certain time. Keller emailed me and told me I had to have the Medicare wavier signed by a certain time so why is it not the same for the lien people. It’s the 20th of July and I’m livid because it for sure looks like a lot of us will not be getting anything before August is here. It’s literally 10 days left and even if they send us the first email now we still would have to wait another 5-10 business days for the second email to give out bank info and then atleast 3days or more for our money to get here. This is totally not fair. I got my first Medicare lien mail at the end of MARCH. How in the H E double hockey sticks is my lien not solved yet. I’m really mad I can’t even express this enough.

Hello everyone, I hope you’re all having a good day.
Recently I’ve been diagnosed with ADHD and got told by the psychiatrist that he doesn’t want to prescribe me any medication for it since I have sickle cell and he’s worried that it might cause me problems(?)

Is there anyone in here that has ADHD and taking meds for it? If yes how does it affect you?

So I was just in the hospital this past week and got discharged today, but the whole while I was there I kept telling the doctor that I felt as if she was disregarding my pain and that she wasn’t following my pain plan. Not to mention she hadn’t consulted hematology as she states “they wouldn’t be of any use” so I politely asked for another doctor and she told me “due to new hospital policy we are not allowed to give you a new doctor” and she turned and walked out of the room and put in discharge papers knowing I was still at a 10 level pain. So after she discharged me I went back to the er and let them know the situation I got a couple doses of pain meds in the er and was feeling pretty ok to go home. Now I’m home I have no pain meds and my pain is back up to a 9 I don’t wanna go back bc we all know wha they’ll think of me but then again I kinda don’t have any other choice. What should I do?

Hey family, I had a lil mental breakdown this evening because I’m experiencing discomfort when eating. I’m 8 days post transplant and the doctors told me that it would be tough to eat for at least a couple weeks. I think my frustration really hit its peak today because I actually had yummy food in front of me (chicken drunken noodles) and every bite was a fight to swallow.

I spoke to my nurse and she recommended I try and reach out to a facebook community like this one to gain some insights on what foods may be easier to tolerate.

About me:

I’m not allergic to anything. I can chew just fine. Smoothies and shakes have been tolerable. I’m tired of drinking ensures with every meal or as a substitute. I’ve been able to eat fruits like melon, honeydew, and cantaloupe fine. I assume because they hold water. Some soups too. Everything else so far has proven difficult.

Im approaching my 4th week (on Monday) of my projected 6 week hospital stay.

Any advice or recommendations are greatly appreciated. Thank you in advance!

Hello, I am a parent with sickle cell. Would any parent be generous enough to be my friend so we could share our journey?

I know this is too much to ask, but sometimes one needs just someone to talk to.

Regards

Is there anyone who is unmarried and how is ur life ? living alone with sicklecell hurts ? how u control ur feelings and other stuffs etc.,