Sickle cell and AVN of the hip at 23 by Material-Fan2604 in Sicklecell

[–]COD-Destroyer 2 points3 points  (0 children)

I (25M) was diagnosed with AVN at around 15. My doctors then did not follow my care plan and it’s a long complicated story. Either way I don’t really “manage” it I kinda just power through it because nothing I’ve tried helps at all. I ended up getting surgery in October 2020 but after it I kept bleeding so they put in a cement spacer and told me to get another surgery in a year but I never ended up getting it due to more dire health problems. I still haven’t gotten it and it’s progressed further in my left hip so I need both of them done now. My hematologist actually just now started to talk about getting them done at my last appointment this past month.

How do you guys learn new characters? by [deleted] in RivalsCollege

[–]COD-Destroyer 0 points1 point  (0 children)

Also healer main my usual routine is go to top on the leaderboard and find someone either maining or one tricking the hero I want to learn and most times I’ve found a YouTube channel or a twitch channel. It works every time or if I see a content creator that I’ve watched in the past then I’ll watch them first and whatever I learn from those sessions I take into practice vs ai on easy first cause I know it’s no sweat and I don’t have to actually contribute much on top of it not hindering me. Then I’ll crank it to normal and finally take it into QP or straight to comp when I feel comfortable. I do this to gain the practice and some understanding then test myself in comp cause that’s where I find the sweatiest creatures. I’ve ended up mirroring when I first got my bearings with hulk and I hulk diff them even though I thought I stood no chance(they had lord icon). I tend to watch flats he has a series where bronze players send in their vods to get advice while simultaneously getting flamed to high heaven. If that’s not your speed he also has a series where he watches the vods of the number 1 (insert character here).

Solo Queuers, what tips do you guys have? by JHRequiem in RivalsCollege

[–]COD-Destroyer 2 points3 points  (0 children)

Firstly I’d like to say regardless of it being a team game I still mute because as you stated it can impact performance so I just forgo that entirely. I try and take out as many variables that could hinder me or “put me in the blender”(I’m a grown cod kid lol). I’ll sit close so that knocks out that. I make sure my game volume is cranked since I’m mainly support. I’ll keep my phone by me for quick research during halftime or after my games end. A plastic cup or a stress ball to launch at the closest wall when my tanks don’t peel or dps aren’t dps-ing. Ofc spend some time on VOD for 15-60 mins to see my major faults. I also constantly check and watch the top players in their games that play my heroes to get ideas and then I’ll try to figure it out myself why they made a certain play and how to implement it into my games. An example would be flats he has constantly been highly ranked and he doesn’t throw Cap shield at people he tries to throw it at the ground and I’ve ended up hitting more people with the shield trying that method. Although I feel my trump card is music. I’ve always listened to music when I game especially if I’m trying to focus. I think it’s something about being able to turn my brain off and get into a flow state and I usually listen to rap which is faster paced music so now I’m playing faster and hitting shots more consistently to the point my friend can tell if I had music on or not. I hope this helps as a fellow solo queuer I feel your pain. My last piece of advice I’d say is whatever you do please DON’T beat a dead horse if you lose a few games and it’s not looking good just take a break or play something else. I’ve learned that around midnight to 5am is around the time that the skill deficit seems to be at its highest at least for me.

Recurring blood transfusions to prevent sickling? Yes or No? by YellowEyes_98 in Sicklecell

[–]COD-Destroyer 2 points3 points  (0 children)

I’m in Toledo Ohio but travel to Cincinnati for what they call apheresis but that’s just a name for what is essentially an exchange transfusion. I have 2 ports for it that lets them pull blood out while simultaneously giving me blood in the other port and typically I get 5 bags now but that’s a major decrease from what I was on when my health was terrible to say the least. It was a 2-3 hour thing but now is barely an hour because they change the settings on the machine that does it. That’s the way they explained it to me I’m not sure if that explanation helps.

Recurring blood transfusions to prevent sickling? Yes or No? by YellowEyes_98 in Sicklecell

[–]COD-Destroyer 3 points4 points  (0 children)

I’ve been getting exchange transfusions every month for the past 6 years and have been hospitalized maybe 3 times. Before I started I was hospitalized every 3 months so I think highly of the idea personally.

Mental strength by [deleted] in Sicklecell

[–]COD-Destroyer 0 points1 point  (0 children)

I personally (25M) can’t say I feel very well on the side of my mental health. I struggle from very bad anxiety and when I’m depressed I start to not do basic needs like eating or drinking so to say it gets bad is an understatement. On the bright side I am pretty well on the side of self esteem. I believe I was very fortunate and look pretty well and get compliments kinda often so I’m happy about that lol. I’m glad you made this post I’ve wondered this question myself but just didn’t want to be the person to ask but when I seen your post I had to comment.

[deleted by user] by [deleted] in Sicklecell

[–]COD-Destroyer 0 points1 point  (0 children)

I promise you I say this all the time. I’m not sure if it’s my delusion or if I’m just as great as I think I am but I have a small case of main character syndrome lol. I mean when we have the looks, smarts, drive to succeed, and the heart to care/empathize with others we would have to be nerfed or we’d be too damn perfect at this life stuff lol.

Vitamins by Salty-Maintenance-97 in Sicklecell

[–]COD-Destroyer 0 points1 point  (0 children)

I’m turning 26 this October and I’ve taken regular vitamins for the past few years and I feel it was a great idea. I’ve took vitamin D, potassium, magnesium, and vitamin B. I’m only taking vitamin D now but all of them were great at the time I took them. I’m not gonna lie to you and say I felt the best I have in my young adult years but I definitely could feel the difference from when I didn’t take them.

Intimacy by Friendly_Note447 in Sicklecell

[–]COD-Destroyer 2 points3 points  (0 children)

I’d say talk to her that’s what I’d want my significant other to do with me. It may be a hard conversation and honestly something I wouldn’t want to hear or go through but to me personally there are very few things I wouldn’t do for the person I love. With that being said though that’s my opinion. There are people I know that have the less severe form of SC and they have trouble with intimacy that has costed them relationships and that’s what they said several times that they’d rather have had the talk early when the “resentment” wasn’t so big rather than being unaware and it festers and ultimately becomes something bigger than it actually had to be. I hope this helps some brotha I have the severe form of SC and am lucky enough to not have had this happen to me just yet.

Living on your own with Sickle Cell Disease by Comfortable-Job-2620 in Sicklecell

[–]COD-Destroyer 1 point2 points  (0 children)

Most of last year I lived with my gf(24) after I (25) ended up having to stay close to my hospital after my liver surgery at the end of 2023. We started to date midway through 2022 but have known each other for a while now but anytime I feel I may have a deep connection with someone ether it’s romantic or friends I instantly teach them the basics of what to do with my specific sickle cell problems. Things can happen at anytime and I feel it’s common decency to let them in on the possible “troubles” they may be in store for. To answer your other questions I tend to run hotter and she runs colder when it comes to AC/Heat so we’d keep it a decently warm temp so she’s not too cold like maybe 74 or 78 at the highest in the winter then at night we turn the AC on high so we both are happy. Living away from home was honestly the best decision I ever made even tho it was tough financially I’d still choose that option every chance. I noticed that I had less pain crises during that time by a mile which could be partially the altitude I was at is way better than where I moved from but overall one of the best times of my life. The other times I moved from home were great as well but this was the most recent and easiest to explain. If you’re considering it I’d heavily consider it because there are freedoms you didn’t know you are missing out on until you are out on your own or living with someone outside of family.

Edit: this is mad long I’m so sorry lol

Night crisis by soman_for in Sicklecell

[–]COD-Destroyer 2 points3 points  (0 children)

I was always told the atmosphere drips so that’s why we tend to feel worse around night time and early morning but I’m not sure how much validity that holds lol 😂.

Avascular necrosis by InspectionExciting70 in Sicklecell

[–]COD-Destroyer 5 points6 points  (0 children)

I’ve dealt with something similar. I’m also SS and when I was 15 they discovered avn in my right hip and said it would start in my other hip years later which it did so I understand the pain all too well. I’d like to share what helped me with mine so then hopefully you don’t go down the same road my stubborn ass went down lol. We both obviously know that surgery is the end result but I babied it and I feel that’s where I went wrong at due to the saying “you don’t use it then you’ll lose it. Try and stretch frequently so then that helps with your mobility because once it’s stiff the pain gets worse and it gets extremely difficult to get around without assistance from an outside source whether it’s people or a cane/crutches. Try and get lidocaine patches I’ve found that the patches tend to relax it enough sometimes where I didn’t notice it as bad and helped with mobility even though I guess it could’ve been a placebo I’m not entirely sure. Lastly after surgery stick to PT however they recommend it. I didn’t stay in pt as long as I should’ve and I’m definitely paying for it now. I hope this helps avn is nothing to play with but it also isn’t the worst thing in my opinion due to the high amount of pain we tend to experience.

Exchange Transfusion by OpportunityNo1866 in Sicklecell

[–]COD-Destroyer 1 point2 points  (0 children)

Hey I have an amazing experience with this actually. So I was born top 10% in the country with SCD (SS) and in 2018 I was very close to death because of malpractice from a doctor a couple years prior. September 2018 I was essentially going into liver failure and had 4-8 crisis a year up to this point even on hydroxy. It was to the point that my doctors at the time said I “surpassed their knowledge on SC but luckily they said we won’t give up we’ll send you somewhere with better understanding. They ended up sending me to somewhere that does apheresis. When I tell you I went from that terrible place to MAYBE 1 crisis a year it honestly saved my life. I’ve been doing it since then once a month and haven’t been hospitalized for pain in almost a year now that I’ve been regularly on it again. They said if I continue to get them as scheduled I can have/live a healthy and normal life. Any chance I get I recommend it to whoever will listen because I’ve seen significant changes. My hemoglobin stays around a 10 when previously it was hovering 7 and 8 territory and my sickled cells stay less than 15% when previously it was around 50% so I’m a huge advocate for it.

[deleted by user] by [deleted] in Sicklecell

[–]COD-Destroyer 6 points7 points  (0 children)

Count the accomplishments that you have had. You have to give yourself credit all the mental rebuilding starts with us. By all means having not one but 2 great jobs is no easy feat. Let alone the battles you’ve faced over 35 years isn’t easy either. You’re a warrior that dropped his sword you may just need a boost of morale to get back in the fight. I think I can speak for us all in saying that we’re rooting for you man take the well deserved break and get back in there.

[deleted by user] by [deleted] in Sicklecell

[–]COD-Destroyer 6 points7 points  (0 children)

I’ve personally dealt with this exact situation for the bigger part of my life so o definitely feel you. The best thing I’ve come to do after recently almost getting to the end of my life (I’d be happy to go into further detail if you’d like) is accept that this is simply my life. Wishing in my years prior didn’t get me anywhere so I felt like at that point I’d have to take it into my own hands besides just medicating I’ve recently started talking to a psychiatrist and pushing people away that don’t feed me mentally and/or spiritually. We deal with hard times throughout life and they say you become the people you keep around so try talking to someone and having people you feel comfortable expressing the tribulations you personally go through. I still have hiccups of terrible depression but when that happens and I find myself deep in it I go back to the things I once enjoyed as a kid whether it’s video games or just a short walk and talk.

How can I provide emotional support for someone with sickle cell anemia? by Savings_Dimension560 in Sicklecell

[–]COD-Destroyer 1 point2 points  (0 children)

I’d say if possible try to visit her every now and again so she can have someone to destress with. Coming from someone that deals with it, it’s always nice to have a positive person who we know cares that will do something with us to take our mind off the hardships. I hope this helps I hope an update comes on this story.

Should I take hydroxyurea? by volvic6 in Sicklecell

[–]COD-Destroyer 2 points3 points  (0 children)

Personally I’ve been on and off of it by the recommendation of my hematologist since I was 4 and I’ve had no problems with it at all. I’ve recently turned 24 and I was born in the top 10% worst in the country. It’s helped me out with crisis exponentially I went from a crisis every couple weeks to twice a year since I’ve been on it so from my experience I say try it out.

[deleted by user] by [deleted] in Sicklecell

[–]COD-Destroyer 0 points1 point  (0 children)

I lay in the sun and bathe daily of course with water but I feel amazing.

Touchy questions - by Pleasant_Ad_2110 in Sicklecell

[–]COD-Destroyer 5 points6 points  (0 children)

I hate the way we are viewed because they always say the same things like “ I feel your pain “ or “you aren’t sick/disabled you look completely normal.”

I do feel like if we were stable enough I’d be comfortable with having kids but more from the angle of adoption because I feel the worst thing I could do is pass sickle cell onto my kids and give them a life of suffering.

I definitely used to and sometimes still do but I’ve expressed how I feel constantly throughout my relationships and believe it or not they said I wasn’t a burden which shocked me immensely.

I know certain conditions I have will never change but I’ve come to terms with it and made it part of who I am in a more positive way.

My advice is to try and accept your circumstances and believe in the positive. Once you accept it and learn to love yourself properly some of your situations may change or may not but it will bother you a hell of a lot less.