2112
Girl with chronic kidney disease
So it has taken me a while to share my story, but I'm desperate. I know the internet might not be the best place to do, but this is my first step.
Back in 2012 I got diagnosed with Lupus. Initially I thought it was a joke, Lupus sounded like fake disease to me, but to my misfortune it is very real. To make the story short this condition started affecting my heart and kidneys. I can literally call the hospital my second home because I spend more time there than anything. I am swamped in debt with my medical bills because I am only 24 years old, no insurance, and I do not qualify for any federal aid. This bothered me initially, but oh well life is what it is, I work and go to school for engineering. All of this has crippled me, but I try my hardest to not let this destroy my life.
I cannot even begin to name all the medication I am currently on, but the one that I hate so much is Prednisone (steroids). I have been on extremely high doses and I cannot stop taking them because they are pretty much keeping me alive, but this past year this medication started destroying my body. I developed what they call "the moon face", I gained weight, and these horrible stretch marks started to take over. In addition to the Prednisone my doctor could not get me on dialysis due to financial situation and lack of insurance, so I gained 40 pounds of just fluid. I was not able to wear shoes and I quickly went from an extra small size to a XXL. I still didn't let this affect me as much, but the stretch marks got worse and that is what up to this day is killing me.
I know that is superficial, but I am disgusted with my body. I do not have enough money to get plastic surgery and I want to know if anyone out there knows of any other alternative treatment for these horrible marks. This is important for me because I want to be able to love myself in order to be well. I believe that a positive attitude towards life will keep me healthier than all the junk they've pumped me with. I have done chemotherapy for my kidneys and that was a huge failure. I am finally doing dialysis and it has taken some of the weight off, but I am marked for life with all these scars I've developed. I hate it. Life is just what it is. I used to be healthy, a somewhat attractive girl, and I had such a big desire to become something in this world, but that has changed. I still try to pursue everything I wanted despite being in the hospital like 90% of the time. I do not have any family around me, so I've dealt with all of this on my own and it has been extremely lonely, but at the end of the day I only have myself and I want to be happy with whom I am in every aspect.
I don't expect everyone to understand, but I am hoping that someone out there knows of some sort of solution besides plastic surgery for me to get rid of these marks and feel comfortable in my own skin once again. Please internet, help me.
I've included some pictures. They are not pretty.
EDIT: Thank you everyone for the kind words and advice. I'm linking a picture of what I used to look like and what I look like today.
So many people have suggested to create a GoFundMe account here is a link to it
http://www.gofundme.com/ufhc39ng
Thank you so much for all the help and all the comments, I was definitely not expecting so much support from an online community. It's so nice to see the kindness of strangers. Thank you so much reddit. You guys are amazing and make me feel so much better knowing there is support out there <3
Scaryclefairy193 karma
Thanks for the advice, that is really helpful and oh my gosh I feel like I have no room to complain with you, you're younger than me and going through the same, God bless your soul. I don't know if you believe in that, but I do and I will keep you in my prayers. Honestly, you're stronger than I am. I would have collapsed if I had gone through this at that age. You're a strong one <3 Once again, thank you.
Lynoctis23 karma
Never diminish your own struggles just because someone else has it worse. You're important, too. :) I wish you all the best in your treatment and difficulties. My husband's father had kidney failure because of heparin. It destroyed his only remaining kidney :/
Scaryclefairy3 karma
Thank you so much, and I'm sorry that happened. It sorta scares me cuz I get heparin too. Right now it just makes me bleed a lot, I'm hoping they take me off it soon.
Ionicfold-60 karma
A single pair of working hands is many times more productive than praying for something which doesn't do shit for you.
You said that you're four years into your green card, for your 5th year are you able to then apply for help?
Just take it easy until then, and keep your mind clear so you can kick yourself into high gear. Only yourself and other people can save you, praying in the long term will make you lose hope once you realise nothing you think or say with your hands together is going to help you.
All you can do is wait and take one step at a time, deal with your bodily image after you gain better health and help. You are who you are, just think of the scars as the fight you are winning, not as something that you should be ashamed of.
Scaryclefairy22 karma
I think the praying part is just a bit personal. In the end we all believe in something, but I do agree with you.
Yes, once I reach the 5 year mark I will be able to apply for aid so I am slowly waiting and hoping I will make it until then. I am just overwhelmed about how much my body has changed. It's hard when you don't recognize yourself. I'm marked everywhere, not just those stretch marks, but my body doesn't heal properly so I have scars everywhere. My arms look like I shoot heroin or something like that from all the IV's nurses have done (and messed up). Idk. I think it's normal for me to be in shock for now about all these changes, I'm sure eventually I will come to terms with it but it is all so new. It's crazy how much everything changed in just a few months.
useful_idiot11810 karma
The one I am subscribed to is r/dialysis but I'm sure there's a subreddit specifically for kidney disease. I can check and get back to you.
protestor4 karma
I was more asking so that /u/Scaryclefairy would know about the /r/dialysis subreddit specifically (she might not find the right subreddits; reddit search sucks). But post other related subreddits too.
Scaryclefairy2 karma
Yeah, thank you. I didn't even think there was a subreddit about it. I will start searching for them now. I'm glad I made this post and people point out these things. I can be really stupid at times.
Reality_Facade177 karma
The fact that you're swamped in debt because of a serious medical condition at the age of 24 is fucking sickening.
I see you said you'd immigrated here. I'm sorry on behalf of the US for our deplorable health care system.
I don't have any advice unfortunately I know nothing about lupus, but I hope everything works out for you in the end.
What country did you move here from?
Do you have family here?
Is going back to where you came from an option? Assuming healthcare is better there...
Nerdinater78 karma
Yea man.. reading this as a Canadian I am truely sad for her. I remember a friend of mine that lived in the U.S commited suicide for all the debt he had just because of a back injury.
buscemi_buttocks12 karma
Yeah, my good friend's twin brother committed suicide at 24 because of his crippling medical bills for ulcerative colitis. The USA med system blows.
Scaryclefairy3 karma
Gosh, I am sorry to hear that. I get overwhelmed by the bills but at one point I really said to myself "Fuck it" when collection agencies call I just tellt hemt he truth "I am broke and sick, I cannot work fulltime, I don't have the money because I have to pay for rent and food" I know it all goes against my credit, but oh well. I could careless to have a good credit at this point, I rather have a bit of moneyt o pay for the things I need and focus on my health. Money is not worth it.
Scaryclefairy7 karma
I recently broke my back. Well I got two compression fractures from a fall I took outside my house. I will be forever in debt, but suicide is not an option in my mind. I love myself too much and the people around me to do something like that. I'm sorry your friend took that route :(
supernovastarblast82 karma
OP, I know (almost) exactly what you are going through! It is like reliving my lupus story all over again. (Feel free to look into my comment history, I have mentioned my lupus couple of times.)
I was diagnosed with lupus in 2008, specifically lupus nephritis. My kidneys were on the verge of shutting down and quick. A very painful biopsy found it and I was put on chemo right away. Just like your current situation, the chemo didn't work, until we tried something called IVIG, or IntraVenous ImmunoGlobin. The IVIG worked and the chemo was able to do it's job right after. I was thrown on some heavy duty chemo for 4 months, then tossed onto mycophenalate mofetil, aka the chemo pill. I had to stop that once I got my cardiomyopathy diagnosis in 2009, then I was switched to my current asshole immunosuppressant, azathioprine (brand name is imuran). Currently, my lupus is in remission, but I am always waiting on bated breath for it to return.
I totally feel for you about prednisone. It helps immensely, but the side effects suck disgusting, hairy balls. When I was on it, I swelled up in my legs, face, belly and even in my crotch. My face was fat and felt like water all the time. Even worse, I had to be "weaned" off of it because heaven forbid you get the horrible withdrawals. Honestly, I would have rather done that then be weaned off of it. I hate prednisone with a bloody passion, and anyone who has to deal with it on a regular basis, I feel my heart break for you.
I too have stretch marks. Mine are not as prominently featured as yours, but they are still there. I have them from my waist down, and I have a permenant water pocket on my left side, courtesy of the lupus and the biopsy.
OP, don't be scared of your stretch marks. Yes, they will glare at you every day, but think of them as your proof you continue to survive this ordeal. You were in a worse place before they arrived, they are your markers to incidicate how far you have come. I will admit I hate mine as well, but they serve as a reminder to never allow myself to get that sick again, to fight hard for my health, and to fight for you to receive treatments to see your lupus in remission.
If you need any support, have any questions on what to expect with your medicines, or just need to vent, you are always welcome to PM me. Don't even be shy to TMI me, OP. I have been on just about every blood pressure medication and diauretic pill you can think of.
My wish is for you to find the strength to keep fighting your lupus, the wisdom to gain from your experience for the future, and the courage to treat yourself kindly on days when nature will not. It helps to stay upbeat and happy, and on days you are not, embrace those, too. ♡
NoBedtimeForBanditos16 karma
Hey! I have been on a similar trek but with different diseases. I was diagnosed with crohns disease in 2003 and MS in 2009.
I've been through IVIG treatments which were amazing when they worked. I went from being blind and unable to walk to the next day feeling normal again. Unfortunately that didn't last... but that's life.
I took immuran for 5 years for crohns disease as any other medication could cause my multiple sclerosis to flare up. I have tried several MS medications but finally had to go off all medications for MS and Crohns as the combination of the two could cause the JC virus and possibly kill me.
All of this is to say that I began a new medications called Aubagio. It was originally used for rheumatoid arthritis. I am using it to control both diseases and so far it's amazing. I am no longer in constant pain from my crohns and can eat almost everything again.
I am a guinea pig for my neurologist and my gastroenterologist but so far so good! Since autoimmune diseases are related maybe your doctor could look into it for you?
And about the prednisone stretch marks... they fade, mine are barely visible anymore!
Finally, contact the drug companies. I was able to get several of my medications for free until I got a job and health insurance. I had gilenya for MS completely paid for and had a small deductible to pay for Betaseron. It's worth a shot.
Scaryclefairy3 karma
I never thought of contacting the drug companies, that is a great idea. I feel for you, I've been about the same just aguinea pig for nephrologist and rheumatologist and I've tried all sort of drugs for this disease. I'm sorry you've gone through all of that but stay strong <3 Thank you for the advice.
Scaryclefairy2 karma
I have been through the same things you have, taken the same medication, I also did that cancer pill, I've done like two different ones and high doses of Cytoxyn. I will definitely message you. Thank you for the support.
supernovastarblast2 karma
I was on that chemo treatment. I HATED Cytoxyn. It made me so sick that I was deliberately force fed my aunt's ginger cookies just to function. It did the job, but it was a miserable experience.
Scaryclefairy2 karma
Oh, I can completly understand that. I'm sorry you went through that. Initially I was taking the drugs they prescribed me for nausea and what not, but they didn't work so I started smoking pot to deal with it and that worked wonders, it took away the nausea and increased my appetite. I don't smoke regularly, but I would definitely recommend that when things get to that point. It helped me out a lot.
altair31252 karma
Lupus, prednisone (steroids), dialysis.
Is this a House episode?
Seriously though, seeing the before and after pictures, that is so fucking horrifying. I really wish you the best, you look like a nice girl and no person like you should deserve such mental agony.
Scaryclefairy3 karma
I've heard the references to House but I've never seen that show, perhaps it should so I finally get the reference, lol. Yeah, it's been a big change. Thank you for your words.
docdnae34 karma
If you have end-stage kidney disease requiring dialysis (which you fit), you automatically qualify for medicaid. Have you applied for this?
_Choppy37 karma
Where are you originally from? If you were to move back, what would your situation be like?
Scaryclefairy10 karma
I'm from El Salvador. If I moved back, I'd be paying a private hospital. The government there isn't reliable and they don't really offer much help so my family would have to cover my expenses.
Scaryclefairy14 karma
They help as much as they can. My parents have covered for some of my medication at times, but they do not have the amount of money to cover my medical bills and it'd be ridiculous for me to ask them to cover something like that. I wish I could provide for them and not the other way around. They're as supportive as they can be being so far away.
Palehybrid-72 karma
It's in other comments and I'm not sure why she didn't mention this in her post but she's not an American citizen. She has a greencard but apparently hasn't had one for long enough or something I'm not entirely sure but this makes a whole lot more sense.
Honestly if I had to guess she came to the U.S. in hopes of getting better medical care with plans of just going back to her country and skipping out on any bills. Since it turns out she has a lifelong illness that will need constant treatment now she needs funding and help which explains the reddit post.
Scaryclefairy39 karma
Lol. You're a bit mistaken. I got my greencard before I got diagnosed. I came here because my mother got married to a US citizen and my sister and I were under her custody. I never expected to get this illness nor go through any of this. Before I got sick I worked full time and went to school full time, I did more than most Americans and not with the purpose of taking advantage of anything in this country. I'm honestly a hard working person. And to be completely honest, I had a better lifestyle back in my home country with my father, but as I aged I also made my life in the US and sadly I got too sick to the point I cannot travel.
DeangeloJeremitriusV28 karma
Have you applied for Obamacare? That would be your easiest option for getting insurance.
Does your hospital or one in your area have a program that help with debt based on income? This may be worth looking into.
Scaryclefairy39 karma
I've applied to the hospital assistance program, but I'm there so much my bill keeps rising. I've literally spent most of the last four year living in the hospital. As far as obamacare I can't afford any plan they offer and I don't qualify for free assistance because I haven't had my Greencard for five years.
Yes-She-is-mine10 karma
I don't understand this at all. If she spends 90% of the time in hospital, she probably isn't working... which makes her eligible for state aid. Her story doesn't seem right.
Scaryclefairy75 karma
It is due to my immigration status. In order to receive aid you must be a US citizen or have reside in the US with a green card for five years. I've only had mine for four and I do have a part time job, which I work probably like four days out of the month if I'm lucky but that's my only income. I attempted to get a lawyer to see if I could get aid but even they turned me down because that's how the law is and there is no loophole.
Yes-She-is-mine31 karma
I'm sorry to hear that. And I apologize for being skeptical and making you feel like you needed to explain yourself.
Scaryclefairy39 karma
No worries. It's the Internet so I understand why anyone would be skeptical.
cellardoornotthe1st2 karma
I thought that even illegal residents can apply for Medical...perhaps that's changed?
Scaryclefairy2 karma
Yeah, I don't think that's quite true. You have to be an US citizen or eligle legal alien to quality. As a permanent resident you have to reside in the country for five years in order to get federal aid. I'm almost there, I've actually been in the country for six years but the first year I was here with a visa and the second year I was just waiting to get my resident card so I've only had my Green card for four years.
DeangeloJeremitriusV8 karma
Yeah. She mentioned a greencard, so maybe that's the source of the hold-up. And wow; I'm amazed that she is not on dialysis yet.
Scaryclefairy24 karma
It is due to my Greencard and I started dialysis about a month ago. Initially my doctor made me do chemotherapy because the hospital would do if for me and just bill me later, but that didn't yield any results in my health. I was supposed to start dialysis about three years ago, but they waited until my renal function hit 5% to start it. I think legally once your kidneys go below 10% they can do what they call emergency Medicaid. Since it just started I'm not too sure how that works, but I think that's what allowed the doctor to finally start me on dialysis. I still have to pay out of pocket for the treatment, but it's a partial amount.
bigmac8013 karma
"I was supposed to start dialysis about three years ago, but they waited until my renal function hit 5% to start it."
I'm so disappointed in my country. From a nation that loves to thump its chest and talk about how exceptional they are, this miserliness with a person in need is anything but exceptional.
I'm sorry this has happened to you. And I am angry because I feel it should never have gotten this bad at all.
Scaryclefairy3 karma
I was angry about that too, but then I thought this country really has no obligation to take care of me. Of course it's help, but it is what it is. I'm not too knowledgeable about federal aid programs and all that jazz, but I am just glad that I am able to at least get some sort of medical attention, y'know? It might not be the best, but I am still alive and for that I am thankful despite all the crap I've dealt with.
oxymom200222 karma
I am a caregiver to my daughter who has chronic and severe health issues. One thing that has been important for both of us is developing interests that can travel between home and hospital. How do you keep yourself distracted? I wish you all the best and will keep you in my prayers.
Scaryclefairy26 karma
I recently taught myself how to knit. I do silly stuff like that to keep my mind off things. Also copious amount of Netflix, watching some of my favorite shows helps. I don't know, I read a lot and sometimes play video games on my computer. Thank you for adding me to your prayers, I am not religious, but I do believe that I am still alive due to His great mercy.
Basic568 karma
Just so you know, after reading this thread, I truly admire you. Oh and, don't cut yourself too short. You're alive due to the sheer personal strength you seem to posses.
Scaryclefairy3 karma
Idk where that strength comes from sometimes. They've told me all sorts of things, like "you're having open heart surgery", "you have beginnings of osteoporosis" just terrible news and I never know what to say. The doctors say I always have a good reaction to bad news. It must be so used to its I suppose, lol. I dunno, it life. Sometimes I get sad, but we all have problems one way or another. Thank you for the support :)
Serial_Buttdialer5 karma
What do you like to watch? I'm hooked on Jessica Jones at the moment.
Scaryclefairy22 karma
Doctor Who, Parks and Rec, Bob's Burgers, Friends. Honestly I watch the same shows over and over, lol. I also like foreign films. There's really nothing to do at the hospital. I try to be nice to the nurses (A lot of people on the renal floor are assholes to them) so I walk around a lot on the floor too to get some exercise.
SpreadySpaghetti14 karma
I am in a very similar situation! I'm 26 and have been on dialysis for the past 3 years. It was caused by Vasculitis, an autoimmune disease. It is actually the second time I have been on dialysis. I was original diagnosed when I was 15. I did dialysis and had a kidney transplant, but then lost it at 23 and had to restart dialysis. It was pretty devastating. I too have felt with the prednisone, weight gain, moon face, constant hospital visits, stretch marks, insane medical bills (I am 100k+ in debt). My life has been completely interrupted. But I just wanted to say that it does get better. Once you finally start dialysis a lot of the water weight will come off and will physically feel so much better. The hardest part for me after the physical changes was the debt. I would stay up nights crying because of how trapped I felt by all the medical bills. After a certain point I just had to tell myself it is what it is. I need to be thankful that I'm even alive. The bills need to come second to my health. I can worry about the debt after I finally get another transplant(I've been on the waiting list for 3 years). I know it's not really what you wanted to hear, but it's the truth. Sorry I don't have any answers for the stretch marks. I've tried several creams but I still haven't found a miracle potion. With help of the social worker at my dialysis unit I was able to have the American Kidney Fund pay for my insurance premiums. I'm not sure what the qualifications are to apply for their assistance, but they might be able to help you out. It's worth looking into.
If you don mind me asking, how much prednisone are you on? Is the doctor considering tapering you off at any point?
Also if you would like to take in more detail please feel free to private message me!
Scaryclefairy2 karma
Thank you for the advice I will definitely look into that kidney foundation. Yeah initially I used to get so stressed about they medical bills, I still do from time to time, but every time the collection agencies call me I just tell them the truth "I'm broke and sick" I would like to have the money to pay every service back, but I don't so there's not much they can do about it. I can only pay what I can afford, it's a little step. I'm currently on just 20mg, but I used to be on 80mg sometimes higher. They are trying to taper me off, but they're doing it slowly. You can also feel free to message me anytime. I'm sorry you're going through that, but I find a bit of comfort to know I'm not the only one around this age group going through this. It usually feel so alone because everyone with kidney disease is pretty much old and ready to die.
those_are_MY_organs13 karma
If you don't mind me asking, roughly how much are your medical bills?
Also, hang in there. I have polycystic kidney disease and aside from trouble processing salt and sugar it hasn't given me much of a problem besides a huge infection I got a few years back. I can imagine what this must be like. Sorry for the tangent there lol
Scaryclefairy36 karma
I owe over 200k just in hospital bills. That's not counting labs and all the medication, plus the dialysis treatments that I receive outside of that.
Scaryclefairy22 karma
Yeah. I honestly don't know how people do it. I barely make enough money for rent, food, and my daily meds. I'm trying to finish school but each semester I have to drop my classes because I miss so much from being in the hospital. It's so frustrating.
those_are_MY_organs8 karma
As far as schooling goes, perhaps set up an agreement with your professors and people in your classes to record important lectures and relay assignments and such? Or look into online classes. Not sure if this is an option but just my advice.
Scaryclefairy22 karma
I've tried that. Some professors have been understanding, others not so much. I've managed to clock in a few credit hours. It just sucks to sign up full time and end up only finishing one class. Although with everything that goes on in my life I consider that a success. One class is better than none! I'll slowly get there, but thank you for your advice.
those_are_MY_organs5 karma
You have a really positive outlook on things, considering. If you ever need someone to chat with, about anything, my inbox is open. I can't offer much help but I'm good at listening! :) stay strong, you got dealt a shitty hand but id say you're playing it well enough. My thoughts are with you
Scaryclefairy3 karma
Thank you so much. The kindness of a stranger means a lot to me through these difficult times <3
BlackCaaaaat11 karma
Hey OP, sounds like you've been through a lot. I too have stretch marks from pregnancy and medication related weight issues (most of which went to my stomach). How long have you had these? Mine faded to white within 3-6 months, and now (2 years post major weight loss) are quite hard to see. They are a lot thinner than yours, though, so it might take longer for yours. I've heard that Vitamin E cream can help.
When they were still purple/red I wore them with pride. My stomach survived two pregnancies and a lot of weight gain and loss. I have survived, and my scars were (and still are) a map of my victories.
I hope you can find some peace, OP.
Scaryclefairy16 karma
I've had them for about a year now and they don't seem to change color other than getting red and bigger. I truly hate it because I have them everywhere, not just my stomach. They are starting to cover my entire body and I don't know what to do. I've used vitamin E serums, and products that contain retinol and collagen to stimulate the skin but it's all just a waste of money because it doesn't work.
DrWhozit10 karma
Have you tried Social Services for funding? Try Patient Service Foundation.
DrWhozit6 karma
It's a foundation that helps patients out with medical expenses. Also The Healthwell Foundation for grants. Look them up online.
Scaryclefairy3 karma
I definitely will. I'm really bad at these sort of things, I really have the mindset of how things are back home and that is there are no organizations nor real government help so I never look for any aid like that. Thank you for the referral.
Scaryclefairy3 karma
I'm from El Salvador and I came here when my mother got married to a US citizen, my sister and I were under her custody so I didn't have much of a choice. I came here legally. I graduated high school and worked like crazy after that, before I got diagnosed I worked and went to school fulltime just trying to better myself and be a "functional" individual in this society. Then I got ill and everything went downhill up to this point.
Scaryclefairy33 karma
You're right, there is no cure. And lupus is an autoimmune disease. In other words it makes my body not recognize healthy and unhealthy cells so it just attacks everything. At this point it has screwed me up so much I'm in need of two new kidneys and I'm not even on the transplant list yet.
arabian_aardvark9 karma
Hi there. I am a certified application counselor for a small nonprofit in Wisconsin. We assist people in similar situations to yours, including immigrants from Latin America, obtain health insurance. I would love to assist you in finding an organization near you that can help. In what state do you live?
Scaryclefairy5 karma
In Colorado. And thank you, any guidance helps. I'm pretty ignorant about what is out there and how to get it.
arabian_aardvark3 karma
You should qualify for tax credits through the Marketplace (healthcare.gov), which lower your monthly premiums. From what I understand, the five-year waiting period only applies to Medicaid, which is a totally different program.
This site has a bunch of info you might find helpful: http://www.cohealthinitiative.org/health-coverage-resources#I%20am%20a%20documented%20immigrant.
I'd recommend entering in your zip code here: http://blueguide.cohealthinitiative.org/ and calling to meet face-to-face with someone who can help.
Health insurance isn't easy to understand or enroll in unfortunately in the US, but there are a lot of people who care enough to help. Please let me know if you have any more questions or need more assistance via Skype.
toastshop7 karma
Your stretch marks represent the fights you've been through and your resilience. Body beautiful. Your body tells a story and it's more than most people's.
I hope you get back to where you want to be and I hope you find happiness and contentment. One love.
Mandatory question - what would you like to be doing age 40?
Scaryclefairy4 karma
Thank you. And by 40 I wish and hope I have a family. They said I'm not able to have kids so that's sad, but I hope it's not true and that one day I can. By 40 I hope I have a little house under my name and all paid off, that I am still working as an engineer and hopefully somewhat successful so I am happy with my career. I also want to own a pembroke welsh corgi by then. It'll be fat and super cute. Haha, thank you for asking that, it was a great question and it made me smile.
DaveRhodes7 karma
I can offer no solutions only my best wishes. Maybe someone more knowledgable than me can setup a gofundme?
Scaryclefairy8 karma
Thank you for that. I've never done a GoFund but I feel really awkward mentioning this to family and friends. I know that is silly because I need help and support, but I've had a really hard time processing all these emotions and dealing with this.
DaveRhodes6 karma
I wish I could offer more than sympathy and well wishes. I hope you find the help you need.
Scaryclefairy6 karma
Thank you. I hope I can come to terms with all of it soon. I just wish things would settle and I could just deal with one thing, but I have such bad luck that many things happen at once.
FatJesusOz7 karma
Hey OP
There is a product called Bio Oil available here in Aus, and I think it is available in the States, and it is awesome for fading stretch marks. Obviously they don't ever really go away, but they will fade to skin tone, not purple like yours. Maybe see if you can track it down and give it a shot?
Good luck with the application for healthcare and support over there. You definately need it, and someone shouldn't have to have the stress of money on top of what you are already going through.
shiroininja7 karma
Prednisone is terrible. My dad had to take it his whole life for his chronic asthma, and i think it contributed to his death, also, do you see crazy mood swings from it?
Scaryclefairy12 karma
Yes. When I was on a high dose I honestly felt nothing. I was really apathetic and could barely express any emotion. Now that they've taper me down I am moody as hell. There are moments where I am happy and the next second I am crying my eyes out for no reason. I hate it. I've asked my Nephrologist (sp?) and Rheumatologist to please take me off this terrible medication, but they do not feel like that's a good choice.
Mustard_Lies1 karma
I have stretch marks on my back. They aren't as severe as yours, but I still felt like shit for about a year and a half about them. Really shit. I didn't tell anyone about them, out of fear or shame or whatever it was.
I looked it up on google and read somewhere that stretch marks start to fade after a while. About a year after I first noticed them, I looked at my reflection and thought "I think they've started to fade."
Now I'm not so sure whether they have really faded... or if I just don't care anymore. I don't look at them. Or maybe I do look at them... but I don't remember it like I used to, I don't think about it all day, I don't think about it at any point in the day. When I used to look in the mirror I would run my hand across my back and feel them and think "Fuuuuck" but now it's different. I don't even know what I feel when I do that with my hands now, I just know that I do it.
I remember the first girl I got with after I noticed them asked what was going on with my back and I just said "Nothing sinister, they're just stretch marks" and she said "Oh, everyone's got those" and then we had a fun night together. I couldn't believe it was that simple, but it is! Nobody thinks it's important (and if they do, why would you even want to be near that person?) There's nothing to feel bad about if you don't worry about it, and there's nothing to worry about in the first place. I'm not going to let something out of my control get into my life like that. I think about what I want in life, and the stretch marks on my back are not a part of that story. They aren't me. They're irrelevant.
I hope you get better, but even if things don't change for a while, there's no reason to feel bad about it. You are still beautiful, you just need to look at yourself from a different perspective.
That part may actually be difficult. During that part of my life I was starting to write, and starting to smoke weed and take other drugs like MDMA. I'm not saying you should do the same thing as me, but you should do whatever works for you, whatever puts you in a place outside of where you'd normally go that lets you see yourself in a different way. I think that girl who just said "Everyone's got those" before we kissed helped most of all. I've never gone to a therapist but that would probably do the trick as well. Whatever works for you, and lets you realise for yourself that "I've been fine this whole time".
Scaryclefairy2 karma
That's comforting. I know deeply down I shouldn't care, I'm just having such a hard time being comfortable in my own skin because my body has completely changed I hardly recognize myself when I look in a mirror. My face changed, I lost my hair due to chemo and other medication, even my nails changed shape. I know eventually I'll con to terms with it, but it's all slowly changing and I don't think my body is done with that since my condition keeps getting a bit worse everyday despite the fact that I try to take care of myself. I really do try, but the sad reality is that this disease is truly killing me.
DeangeloJeremitriusV3 karma
Wow, this really sounds terrible. I'm very sorry. What is the purpose of the chemo treatment with regards to your lupis?
Scaryclefairy4 karma
It was told hopefully shut down my immune system so it stops attacking itself, but I tried that for six months and it didn't work.
CivilityBeDamned-22 karma
How does a brand new reddit account + pictures = trustworthy? Can you post some censored pictures of medical documents or other things that make this appear to be completely legit?
Scaryclefairy10 karma
Um, sure I can do that tomorrow morning when I access my computer. I've been on reddit for a while, just more of a lurker until now. I don't know why someone would lie about something like this, but I guess I understand the doubt since it's the Internet.
useful_idiot118453 karma
Hey, OP! I'm 19 with a rare blood disorder that caused my kidney failure. First, check out the subreddit for kidney disease. We can help try to cheer you up on bad days and there's tons of us taking prednisone and dealing with the extra weight.
Secondly, it will get better. You need to apply for Medicare and Medicaid. You should be able to get both because of the kidney disease and they'll pay for just about everything. I'm not sure about your back bills, but they'll really help with prescription coverage. Also, apply for disability and SSI. I know there's a huge stigma to that but seriously, we're sick people.
As for the extra weight, there's really nothing you can do until you get on dialysis. Have you decided which method of dialysis you're doing? PD or HD? Have you been to get a port consultation done? I believe if you can get on dialysis you'll feel loads happier and healthier.
Despite feeling disgusted with your body, things really will get better. I would suggest doing HD for at least a little while because that you can start doing immediately whereas PD you need to wait a couple months after surgery to begin. I know there's lots of creams and things to help with stretch marks.
Open a gofundme page and share the link everywhere. People will want to help you. This could be a way to save up for dialysis surgery or pay back bills. Once you're on dialysis, you'll be eligible for Medicare and Medicaid. Don't let it wait. You'll just get sicker and sicker. You don't want to get to where I was before dialysis. It's absolutely miserable.
I hope this helps some. You just gotta stay positive despite everything. Maybe start seeing a therapist. I take Zoloft now as well. It helps with my depression and anxiety. I'm sorry you've got this disease and I emphasize with you greatly.
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