I don't really know what I'm doing. I always liked writing but I can't seem to do it so much anymore. I'm not looking for pity but I don't have many people to talk to so here I am. Let's have a good time now yeah? Anything you might want to ask go right ahead. No limits Facebook for verification? Can I do that? Oh well. Looking forward to what y'all are interested in.

Medical document V

Me with MD

Mods I've updated. Hopefully this is enough my dudes. Keep asking frens. Go deeper. I've always been an open book. Just need to ask.

Double gold. Who'd see that coming folks. Still here answering :P

Here I realize that the difference in my upbringing and everyone else's is vastly different now. Just due to the fact that I was adopted. I recommend reading through before asking at this point. I don't really have much to do and no one's been bad at all. 18 hours in and I'm still answering. Hop on.

Comments: 761 • Responses: 92  • Date: 

hilbertspaceman796 karma

[deleted]

AceTheCookie672 karma

I was angry at my mother. But in all reality I have no idea on anything about her life. She died after giving birth to me. My sister who is a year older doesn't have HIV. I have so many questions that I can't have answers to.

HAL9000000385 karma

Dude, black out all identifying information on your document.

Metroidman74 karma

Steal someone's identity at the risk of getting HIV I think not.

AceTheCookie5 karma

:D my type of humor my guy

paolocase389 karma

What's it like living with HIV in the COVID era?

AceTheCookie904 karma

So early. Thanks for asking. It has honestly given me some of the longest lasting peace in my heart that I could hold on to. You can call it twisted. But the world is experiencing life as I do. I don't feel good that such a bad thing is happening. But I feel better knowing more people know what it's like. I still worked my FF job until they didn't have hours and now I work outside interacting with people. I have no fear of it. I guess you could say I'm a special case lol.

tes_chaussettes198 karma

I appreciate this answer. Real talk OP. It might be twisted, but it's also totally understandable... and reality itself is twisted af, no matter how people might want to think otherwise. If you think it ain't twisted, you just haven't seen enough shit yet.

AceTheCookie111 karma

"if it takes shit to make bliss Well then I feel pretty blissfully." Mm song hehe I was raised being told that life isn't fair. And won't ever be. And that's okay. We don't all have the same skills. Or the opportunity.

amason25 karma

Great song. Modest Mouse got me through some hard times. Love them. ❤️

Edit: Specifically Edit The Sad Parts got me through a pretty rough patch. It’s almost hard to listen to now tbh because it takes me back there.

AceTheCookie25 karma

Little Motel here. It's good to bring out that anger too. Just to see all that you have inside you. Bukowski and Bury me with it are real nice.

deus_ex_latino33 karma

I have been confirmed Poz for the last two years. I had a CD4 of 7 when I was diagnosed. Needless to say I was going through hell. Due to that, I dont fear this virus. If it's my time, then it's my time.

AceTheCookie43 karma

I've been hospitalized countless times. At least 25 times, even now more than 1 for each year of my life, doctors have told not only my parents, but me directly as well, that they do not think I have any chance to make it through. I'm just a sad song about a lifelong hospital stay.
I welcome whatever may come.

Xerxys6 karma

Are you male or female?

AceTheCookie9 karma

Male

CthuluSpecialK5 karma

European or North American?

AceTheCookie22 karma

North American Native. Alaskan.

greffedufois7 karma

Do you live in Alaska? (I do too) I'm also immunocompromised from an organ transplant.

AceTheCookie17 karma

only visited. makes more sense when you see im adopted.

greffedufois5 karma

Where do you live now? How are your numbers?

AceTheCookie6 karma

Midwest. Last test was under 50 CD4. Last conclusive viral load was over 36,000. Def not bad for years of missing treatment.

RedScouse297 karma

How has being HIV positive impacted your life? Like how much do you have to spend on treatments? What are day to day issue that you have to deal with?

AceTheCookie522 karma

Treatment is expensive. Testing can be done monthly when conditions aren't great. Medicine was on the way to becoming cheaper but we can't have our cake and eat it too. I grew up with siblings on trials for medicines widespread today. We went from dozens of different ones multiple times a day and now you can take a single pill with 2-3 parts and be fine if that's what works for you.

fremenator87 karma

That's great that things got better, can I ask around how much it costs? It's unbelievable the situation our medical system must put you and your family in :(

AceTheCookie56 karma

I fell asleep answering this one. There are programs that make it free. Growing up you qualify for government assistance and there are various places willing to help HIV positive people further. If anyone is out there scared and don't know what to do. Start at Rainn.

AceTheCookie124 karma

There are far too many day to day issues to think about. I was in the hospital a lot for problems with my lungs. Also arthritis and other joint problems are common in those born with HIV. I always thought everyone got tired so easily and joints hurt after short periods and they just pushed through it.

Cptteabags33 karma

I have a question about the joint problems, I have been HIV positive for 10 years as well type 1 diabetes for over 34 years and in the last year all my joints have screwed up on me to the point I have trouble taken my shots, I can't even scratch my back. out of the 11+ doctors I see all of them just keep sending me to physical therapy, is there anything you find that helps with your joint problems?

AceTheCookie66 karma

I smoke weed. I grew up in a conservative Christian family being told all drugs are bad mmkay. But it's also a reason I was probably estranged from the family. But it's also the only thing that can bring me relief. Not only from physical pain. But it lightens my heart. The effects are great. I don't even need to smoke throughout the day to feel the benefits. You can smoke nightly when the day is done and even when waking up in the morning pain and inflammation are greatly reduced and stay so the whole day. I started vaping cbd oil a few years ago. It was life changing.

kittenmommy37 karma

I smoke weed.

You smoke joints for your joint problems. Excellent! 👍🏻

AceTheCookie16 karma

:3

sparklebrothers245 karma

Feel free to ignore any or all of these.

You alluded to having siblings that are also HIV positive (I could be wrong). Has your mother shared her reasoning for choosing to give birth to multiple children that are HIV positive? Did she know at the time? Did religion play a part in her decision?

Also...

Do you hold any ill will towards your parents? How is/was your relationship with them growing up?

AceTheCookie161 karma

So. Family's come up. This blew up a lot faster than I wanted. I'm adopted. Everyone I was raised with is adopted. Everyone I refer to in my family, except for my sister Claudia, will be adopted. My mother died shortly after birth. I know nothing about my father. My sister Claudia, only a year older, is not HIV positive. My adopted mother and father are white. The two brothers I was raised with are black and HIV positive. I answered my feelings on my mother on another comment. Sadly I will point you to find that.

DestroyHimMyRobots58 karma

AceTheCookie, my comment was removed because it was not a question, so I'm going to try again to post it as a reply:

The way you worded this is full of subtle despair, and I hope you’re as OK as you can be, whatever that means. People I’ve met who were born with HIV tend not to have the most stable or pleasant family backgrounds and really struggle with the trauma of growing up in that. If that’s your situation, there is help available to you, even if you may not be able to access it right now. If you have a rough background and are seeking therapy in the future, look for a therapist or support group that specializes in childhood trauma, because it wires brains in a very, very particular way.

If you live in the USA and have to pay for medical treatment, I’m sorry your leadership and culture lack the ethics to demand universal healthcare as your human right.

Keep talking and keep being open. You sound lost, but that’s OK, and there are people who care, including strangers here. What happened to you is not fair. It may affect how you experience your world now, but it is not who you are. There are professionals and support systems who can help you. Please don’t hide and become insular as a means of self-protection. Ask for help, and when you don’t get it, keep asking.

AceTheCookie40 karma

In time,you will know the tragic extent of my failings.

Heh. Sorry for quoting a game on such a serious thing. But yeah. This is it buddy. Stay tuned.

DestroyHimMyRobots14 karma

Please stick around.

AceTheCookie32 karma

That is not a decision you or I get to make anymore.

N69420-67 karma

I’m sorry your leadership and culture lack the ethics to demand universal healthcare as your human right.

There is absolutely nothing ethical about stealing the money of others to give it away. You could argue that it is moral, but certainly not ethical.

AceTheCookie2 karma

I have to agree. There are foundations where people give of their own money to help. And if there isn't someone steps up to start one. We don't need someone to compel us to give to causes close to us,or ones we have no quarrel with. We can give on our own.

ILogItAll167 karma

I’m really glad that things have come along with treatments in the last couple of decades. I worked in a hospital when HIV first came on the scene. I also lost a family member to the disease. Even though it was medically acquired he went through a lot of prejudice and lost his job. He had slurs about being homosexual (which was not accepted at the time). Have you experienced much prejudice?

AceTheCookie236 karma

When people learn there is always an initial reaction. Some alright. There is still a huge bias and negative stigma even towards children born with it. I have experienced mostly negative reactions but there are some people that can look past even things like that.

ryan4932199 karma

Have you had to confront a sexual partner about it and if so how did that go?

AceTheCookie301 karma

Not too fond of sexual experiences because of the disease and things while growing up. But I've kept them limited to partners I've been with for a time and they know of it beforehand, because it would be a crime to do otherwise. I've chosen relationships because I could see myself being with that person for a long time. Responses have varied from uncaring and indifference to caring deeply enough to want a family no matter the consequences.

AvocadoInTheRain41 karma

and they know of it beforehand, because it would be a crime to do otherwise.

Not in california

knoeKNAME88 karma

It's still against the law, just a misdemeanor offense now.

AceTheCookie49 karma

Glad I moved out of the shithole as a kid.

xennialTA9 karma

In San Francisco there is a small scene, “POS Parties”, where everyone in attendance is HIV+. While group sex is often involved, it can also be a great support group and social scene. It can be very liberating for people who face so much stigma to have an environment where in many ways, they can act more freely than the rest of society.

Have you ever heard of these parties, and would you be interested in attending?

AceTheCookie12 karma

Personally no. It sounds like a great experience. Just not my boat.

ObviouslyNotSans83 karma

Do you have any friends with HIV aswell?

AceTheCookie152 karma

Not anymore.

AwkwardNiobium59 karma

I assume that when you were young you were kept in the dark about a lot of information about HIV, but when did you finally learn about it and the stigma it carries?

AceTheCookie63 karma

Correct. There are many situations I didn't fully grasp, or even know of, until I got older.

ChildishChurro54 karma

What did you think about Eazy-E dying and Magic Johnson contracting HIV?

AceTheCookie89 karma

Tbh. I was super sheltered. Never into sports. Never into anything too deeply to care too much really. It's so much different growing up like this compared to contracting it. I guess from what I do remember on hearing famous people still getting it was shock. While still prevalent HIV is a very manageable disease now.

Lintlickker44 karma

Do you experience restrictions in your day-to-day life that people without HIV likely are not aware of? Like any international travel restrictions? Dietary? Sports you were not allowed to play? Etc. Giving blood is obviously not allowed. Any restrictions similar to that?

AceTheCookie90 karma

Not specifically for HIV. But everything that came along. Time for a little medical history on me. You could fill a 10' room with cases lining the walls with documents written on my stays in the hospital. Most of the time I was in for some kind of respiratory infection. You name it. I've probably had it. Tbh, pertussis, every pneumonia you can think of, asthma which I somehow outgrew, RI without names, I've been hospitalized for colds and flu's, bronchitis and things the doctors CA t explain. I grew up thinking this was somewhat normal. Maybe not all the time spent at the hospital. But the inhaler I carried wasn't the only one in the world. And my childlike mind told me that everyone had joint paint and got tired very easily. Growing up I didn't know it was bad. I was just happy to be here.

rucksacksepp21 karma

Most of the time I was in for some kind of respiratory infection. You name it. I've probably had it. Tbh, pertussis, every pneumonia you can think of, asthma which I somehow outgrew, RI without names, I've been hospitalized for colds and flu's, bronchitis and things the doctors CA t explain.

Oh wow, that is not good in regard of the Coronavirus. Stay safe!

AceTheCookie37 karma

TBH My roommates and I might've had it already. Leading up to it I had a RI multiple times. I was in the hospital and they couldnt tell me what it was with all their tests. All of them. They thought it was bacterial. I'm thinking it was a first wave of COVID.

HouseGB55240 karma

Your post history shows that this has progressed to AIDS and that you are also battling cancer. How has being an AIDS patient impacted your cancer treatment?

AceTheCookie40 karma

Couldn't tell you. I haven't been back since the diagnosis.

HouseGB55212 karma

You had mentioned a bit in another thread about the treatment methods needing to halt your HIV treatments. Did they mention anything about what type of treatment they would want to do at all? I know autoimmune disorders typically disqualify you from immunotherapy, but there are other really great methods that might work for you

AceTheCookie46 karma

I stopped because I have nothing. No money. No more family. No friends. Even with all the assistance. Even if everyone in the world came together to give me a better life. What would it be worth?

ballinjizzle53 karma

I’m so heartbroken for you. I want to squeeze you tightly, but not too tight because I know your joints hurt

AceTheCookie41 karma

there will be lots of popping. you havent broken me. but its like cracking your knuckles for your entire body so squeeze away.

BouncingDeadCats12 karma

Seek assistance with state run medical centers, particularly those with teaching hospitals. County hospitals also.

AceTheCookie12 karma

hmmm. If I leave what I said this might turn against the rules. Don't worry.

Bertrum28 karma

My brother has HIV and I've always been supportive and I've never looked down on him or judged him for having it. But I feel like it's hard to talk to him about it because he has other psychological stuff that's unrelated to his HIV that makes it more complicated. What I'm trying to ask is how do I communicate my support to him without hurting him? Or talk about it in a way that's not like a typical ignorant moron?

AceTheCookie41 karma

Ask. And listen. It is not you who's life has been flipped upside down.

My brothers are also positive but have cerebral palsy as well. One is basically a child. Just take it slow. Let things flow between you organically.

pizzasoup28 karma

What are the most difficult parts for you in terms of managing HIV?

AceTheCookie34 karma

Having my whole life hidden up from everyone since the start makes it hard for me to do so even when I get close to people. It's probably the main reason I'm in the position I am now. Hard to ask for help when you've been raised to do it yourself.

AceTheCookie25 karma

Wasn't expecting this much guys. I'll get to things.

SoulsJunkie24 karma

I've been HIV+ for the past 20 years.

Have you always been undetectable? When were you diagnosed?

AceTheCookie30 karma

Undetectable most of the time. My brothers and I were going through trials on combinations and new anti retro viral therapies. At times we took pills multiple times a day. We've taken dozens. We've taken different ones day and night. We were all diagnosed at birth.

Proud_Homo_Sapien23 karma

Other than people not understanding that U = U, what’s the biggest misconception or stigma HIV+ people still face today? Also, thank you for doing this and sharing your story.

AceTheCookie52 karma

You can get it without fucking or getting into a knife fight with me. The ignorance still astounds me.

hoopsterben20 karma

Recently, I believe, the second man ever was just cured of HIV. Hopefully the treatment he underwent becomes widely available.

Anyways for my question: Has this ever put a strain on your relationship with your parents?

I know I would not have been mature enough to handle this with grace, at say, age 15-18.

AceTheCookie26 karma

They did more than many people would do for anyone else. For that I thank them and can never repay them. I wish I could get some cool bone marrow. I truly hope this doesn't push the virus to change though. Imagine a diesease like that. It already targets you immune system. What if completely camouflages, what if it changes so even these people can be infected once again. Scary times. Even my hope is fading.

Gutinstinct9994 karma

I’d gladly give you mine.

AceTheCookie4 karma

something like less than .1% in the world have it. There wouldn't be enough if everyone of them offered to start donating when they could. It's also very dangerous. For the donor.

ballinjizzle19 karma

What was your childhood like? Did your teachers know? Could you play sports?

AceTheCookie43 karma

You are not obligated to tell anyone by law. I am protected to the point that my employer doesn't need to know. I don't tell them. Even if I believe they might be accepting. I think after facing it a few times my family kept it secret. There's too much ignorance.

ballinjizzle14 karma

I totally understand this. How were interactions if you scraped your knee as a kid or got a cut? I’m so sorry that you have had a world of stress on your shoulders since birth.

AceTheCookie31 karma

No worries. Just like any other. Albeit even as a kid I knew my wounds were special. Only my parents or designated people were allowed to help me. That was weird for some people. Some were told after the fact.

Link_T17919 karma

Favorite anime?

AceTheCookie28 karma

Ayyyye. Plugging that KILL LA KILL. Ryuko is best girl. If you don't cry for best uniform as well you're a monster.

Link_T17910 karma

DON'T LOSE YOUR WAY!!

AceTheCookie5 karma

Sadly. I don't think I ever had one.

Alpa-Chinka17 karma

Who's your favorite Disney's princess?

AceTheCookie31 karma

Maybe the Beauty. My life has made me look like a beast to others. It's nice to be accepted.

Duncekid10115 karma

This may sound odd but... How do you cope with having to bear consequences of something that happened well before you were even born?

Does HIV present a past event haunting you? Or is it just an ongoing problem? In other words, how do you go on with your life?

AceTheCookie27 karma

You can't. I don't understand it. My head can't wrap around it. Nothing I'm told adds up about my family. What I was told by my adopted doesn't line up with the small bits I've been told by my sister and aunt. I will never know my mother. I will never know why I have HIV and why my sister, only a year older with the same father, does not. I will probably never know why my mother was adopted. Why she was estranged from her family. Or why I was from mine.

Oldzoomie15 karma

I'm going to just say "i'm so very grateful you're here today".

I lost a lot of friends during the worst years of the crisis. How is your health? How does HIV affect you today?

AceTheCookie22 karma

Sorry to disappoint. It will soon overtake me. It already has WBC under 40. Viral load is probably already back to 10s of thousands. Not bad. But already small things are happening that show me most definitely that I have 0 immune system.

ckjm3 karma

What changed from being undetectable to such a violent decline?

AceTheCookie3 karma

Years of being off of medication therapy.

ckjm2 karma

Ah that would do it. Why did the meds stop?

AceTheCookie4 karma

No money. No stability.

ckjm3 karma

Friend, there are resources, and it's not a sign of weakness. Look, I'm supposed to be "tough" as a firefighter, but even I've had to utilize public assistance for all my surgeries and weird health despair. As for stability? I'm only alive today because I move so much, but help is always near. It varies state to state but there are options. Would you like some help?

AceTheCookie5 karma

I want more stability than just having bills taken care of.

Adv157213 karma

Is there anything we can do to make you happier, feel better or help with money?

AceTheCookie23 karma

There is nothing you can do for me here. I hope that this can change for someone else tho. I didn't want an easy way out. I didn't want someone to pay my way. I didn't even want someone to be there and need them to understand or to do anything really. I just wish that someone had stayed. That's all some people need... Sometimes that's not enough, just because you weren't the right person. or people.

wet_racer12 karma

Are you able you drink alcohol to the point of drunkenness?

AceTheCookie21 karma

Oh yess

insaneintheblain11 karma

Thanks for sharing!

Have you talked about this with your parents?

AceTheCookie33 karma

How else would I be born with a sexually transmitted disease.

insaneintheblain23 karma

Yes, but have you discussed your feelings about it with them?

AceTheCookie13 karma

Yes

tombolger8 karma

How did that conversation go? What topics were discussed and how did you all approach them and react?

AceTheCookie6 karma

Nothing different than setting some things straight with them considering they've overseen my treatment and well-being since I was born. Just misunderstandings between us I suppose.

italian_spaghetti11 karma

How did your parents contract the disease?

AceTheCookie15 karma

I'll have to ask if I can ever meet them.

AceTheCookie12 karma

I don't know much,if anything, about them.

leguellec10 karma

I see from your post history that you play factorio. Have you tried Satisfactory yet?

It's a beautiful game, first person factorio basically, but less stressful as the enemies are much fewer and pollution doesn't affect them.

It's an alpha release but extremely polished and I think you would like it :)

AceTheCookie4 karma

It would be fun. But I couldn't get too far into it. just would lose interest a few mins in.

noxnoctum9 karma

Are you optimistic about the medical community finding a real cure at some point?

I know it's next to meaningless since I'm a random internet stranger but I'd do anything to help people in your situation. It's completely fucked.

AceTheCookie16 karma

Bone marrow of individuals that have genes(I believe they disallow the virus from even attaching to wbc) have successfully been moved into 2 people across the world. They apparently don't need medicine. A 'cure' is upon us. It is just very dangerous.

WTFwhatthehell8 karma

What's it been like "from the inside" as treatments improved over the last few decades?

Back in the early 90's life expectancy for those with HIV was less than 15 years. By the late 90's it was up around 20 years and the grinding progress of science accelerated faster it now puts it up near-normal.

As a kid did you feel like you just weren't going to survive much into adulthood?

AceTheCookie7 karma

Nah. I was taken in by a good family that did everything they could to make sure I was treated. Even got more siblings with it. I knew I was gonna make it. Since I remember I was told liver will probably conk out around 50 with meds

munji_8 karma

Are you sure?

AceTheCookie11 karma

Ask me. Ask me the deepest thing you can think of.

Green2000ToyotaCamry2 karma

Where are your friends and family? All dead or did you leave them/they leave you?

AceTheCookie5 karma

All of the above.

Green2000ToyotaCamry4 karma

Do you miss anyone still alive? You sound pretty ready to die. At times I wanted to die I kept going for the idea that I still had connections with others here. I have selfish intentions with this question but I’m curious about your mindset. Is there no one left worth sticking around for? Even if your death is inevitable because of the diseases, is there no one worth emotionally sticking around a little longer for? If not and you really feel completely alone on this planet, what is that like?

AceTheCookie13 karma

My biological sister and I are on good terms. We've only met once. Past that it's just pain. I know I'm not alone in my struggle. There are billions of people. Many have it worse. I'm just too tired.

bryce33196 karma

What are some facts you wish everyone knew about HIV?

AceTheCookie13 karma

Unless we're fucking or fighting don't worry. (not you specifically) Your fragile ass ain't gettin it.

Sorry if you were looking for a list. That's all I care that people know.

lizbo26 karma

What is your biggest fear? And what did you eat for breakfast?

AceTheCookie8 karma

Breakfast is what you have in the morning right? So I stayed up all night with a glass of whiskey and nicotine. My biggest fear now. That no one will know me.

Matrozi6 karma

Hi !

Do you feel "limited" in your life because of HIV ? Like you're hesitant to have kids, get married or have difficulty projecting yourself in the future (even though today you can live a normal life with the virus with medications)

AceTheCookie15 karma

Simply put. Yes. But you can also look at it this way. Growing up the way I did and everything that happened I still want things like a family and sexy time lmao. They just aren't priorities. I have a different perspective. And goals than others do.

chiupacabra6 karma

I'm curious if you would be comfortable sharing more about your internal experiences pre- and post-diagnosis, along with how this might have affected your opinions or worldview about fairness, resentment, blame, shame, and privilege?

AceTheCookie16 karma

Yes yes of course. Beforehand I thought nothing. I wasn't thought OF. You see I was diagnosed when I was found by a medical professional. As in in the womb. I have no other worldview than the one I've worked with since birth. The world isn't fair. You can't make it like that. And if you try you will just stand on someone else's back to try and right a wrong.

briefcasefullofbacon6 karma

What is your favorite memory from your life so far?

AceTheCookie18 karma

I don't know if you could ask me for a favorite memory like that. There's so many for different parts. I'd have to tell you about a pair of online friends I had growing up. They lived near each other in a city and were staying over at a friends. We were on skype. They had their laptops setup in different rooms. At some point one of them went to do something and the other ran into their room and took something. I didn't know what it was until the other got back. It was a chocolate bar. At that point I was between a back an forth with them yelling into the skype call. I can only describe the following as being the most cartoonish thing I had ever seen real life imitate as I see them start running around the house in the background of their two screens.

Mcginnis5 karma

How do you feel about this south park clip?

https://www.youtube.com/watch?v=Ai4b7j5a_7M

AceTheCookie11 karma

Fucking died. This a good time. Yeah. I've cracked a few AIDS jokes to fit in. At points I felt bad about it. But. What good is humor if not to lighten the heavy dark moments of life.

fuckingnitrous5 karma

Not sure if this has been asked but what do you like to do in your free time?

AceTheCookie9 karma

Game, listen to music and watch stuff mostly. I used to read, write and draw a lot. Haven't done so in years.

vio2125 karma

How is the diarrhea going? Medical doc says it’s not linked to anything so did you eat something bad? Too much ice cream?

Hope your diarrhea is the fun kind and not the miserable kind!

AceTheCookie3 karma

Have always had issues with dairy. It's sporadic. Sometimes Stuff makes me blow up sometimes it doesn't. It's never bad for me really. I feel bad after a big cheese binge for those around me tho.

vio2123 karma

Lol 😂 diarrhea never stopped anyone from eating dairy. It’s worth it 100%.

AceTheCookie3 karma

It's always worth it lmao

ursula_and_eponine3 karma

Have you seen/heard of the Netflix show POSE?

AceTheCookie2 karma

No

anonymous55343 karma

Are you hopeful about a cure coming in the near future? I’ve heard recently that the second person to ever be cured of HIV was achieved within the last year or so, and that a cure could be seen within the next decade or two. I’m curious what you think or what you know, since you probably follow the progress being made more than I would

AceTheCookie6 karma

My thoughts and feelings on this are on another chain. I am hopeful. But wary. And scared.

TheREEEsistance3 karma

Why did your parents have multiple children when they knew what would happen?

AceTheCookie8 karma

My biological sister who's a year older than I am doesn't have it. The siblings I speak of are all from different families adopted by a couple. My mom and dad.

AceTheCookie5 karma

resist the urge to assume. read about me some more. All the questions you've presented are now there.

Adv15723 karma

Do you like to play video games?

AceTheCookie3 karma

Most of what i do now.

Metroidman2 karma

Have you ever responded like Cartman on south park?

"I'm not just sure. Im HIV positive."

AceTheCookie2 karma

I wish. I have made jokes and he's been referenced here lmao. Would be epic.

matchstickmirages2 karma

What kind of cancer is it that you have? Sorry to hear you have AIDS. When were you diagnosed with AIDS? Why did you stop getting treatments? What was wrong with you in the hospital last year? I assume you got better from that. Did you manage to get your car fixed?

AceTheCookie5 karma

Chest. Honestly I'm sorry for putting that out there. I haven't been back to see if it really was cancer. The truth is I was hospitalized for a bad respiratory infection. Here I was diag with AIDS. I simply don't have money for even food. How will I get treatment? Even free. They did scans and when they came back there were nodules everywhere like a heavy infec. But they also say scar tissue and things from TB as a kid. Also that some nodules were bigger than infection size. It's unknown what it is but my chest feels worse. Even more so than how it was just chilling. I'm usually not wrong with feeling like this. My car is still broken. Some kinda engine leak and now it's killing batteries.

d_brownie912 karma

Earlier you mentioned that you're afraid people will never really know you.

What do you wish people knew about you?

AceTheCookie6 karma

Things I wished people knew are not possible anymore. Somethings can never be told. Somethings have been lost. But I guess now I want people to know at least part of my struggle. not because i want your pity. because i tried so hard to make it so far.

mtb_girl2 karma

Your medical document says you have a history of tuberculosis, does that mean you have had TB before?

AceTheCookie2 karma

yep

mtb_girl2 karma

My mom had TB before I was born, so I have latent tb. She told me stories of how she had to go to a special tb hospital for 6 months because everyone with it had to be quarantined. Did you have to do the same thing? Or could you stay at home? How long was the treatment?

AceTheCookie2 karma

I believe I was just quarantined like usual as to me also being HIV+ and susceptible to anything contagious. A few weeks in and out of the hospital. Life as usual with a few more tests.

WretchedSailor2 karma

What has your experience been when you reveal this to prospective partners?

AceTheCookie4 karma

I'm sorry to answer like this but it has been answered somewhere. But it has been like any other. Some take it better than others.

wonderful1392 karma

What’s been the happiest moment in your life?

AceTheCookie3 karma

The moment that I came to the Truth that sight alone could invoke feelings of love inside of you. I don't have the words to describe it. I had seen her a few times before. Maybe it was a culmination of the week leading to it. Or the life. But in that moment time felt like it stopped. she was on her knees in a group of people. her head raised and tears were streaming down her face. i reached out. but her friends made it there first.

inkedfang1 karma

Is it true that there is a cure for but expensive?

CynicalBrik24 karma

There kinda is. It's not really economical side that is the problem but the adverse effects. First you would need to kill the patients immune system and then get a suitable bonemarrow donation. Basically the same treatment as leukemia.

There has been 2 people to my knowledge that have been cured of HIV as a side effect of leukemia treatment.

But the risks of the treatment are far worse than just eating antivirals for the rest of your life.

AKAlicious6 karma

My understanding (last I read)is that this treatment makes HIV levels undetectable, but we don't know yet if long term it is a cure.

AceTheCookie3 karma

This. What happens when we exhaust our natural immunity by giving it to everyone and we slowly watch the virus change around that?

It doesn't matter how long that takes. This is a war. The viruses can reproduce and attack much easier. they have no emotion. they have no problems for us to work through. The weapons we use are ineffective and weak. They do not target the virus. That is something we are incapable of. a truly terrifying enemy.

Deplete1-46 karma

Did you take AZT? I love the musical RENT.

AceTheCookie16 karma

A lil search shows that's zidovudine. I have taken the generic Retrovir but it was only for a while when I was a teen I believe.