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#glad to see they're doing well even with this new diagnosis

femmefatalevibe · 8 months

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Hey darling, an avid reader of your blog here! I want to say your advice and posts have helped me so much through the past year of my life and completely changed my way of thinking, but now I have a specific question for my situation. I am 22 years old, just graduated from university and I come from a middle-income family (not struggling but needs to be careful with spending) and am very ambitious - I want to live a life of ease and luxury and I am aware I can’t just wait around or expect a man to show up in my life and give me that, so I am also not scared of building a career. My parents continuously tell me they think I am too ambitious for my own good and that they think I can’t handle the stress of having such a career, especially as I have hyperactive thyroid issues due to stress.

On one hand, my diagnosis is correct and I am glad they are caring about me and worried, but on the other I am wondering if it’s their scarcity mindset playing a role in their opinion; for example when I was in school my mom fully thought having painted nails or putting effort into your appearance meant your grades were gonna be worse, which obviously isn’t true and also wasn’t true in my case (which she attributes to her theory, naturally). What do you think I should do in this situation?

Thank you in advance, I hope you have a wonderful day 😘

Hi love! I'm so glad to hear that my blog adds value to your life and has played a role in your personal growth journey <3

Your ambition, especially given any medical-related hurdles, is very admirable. I think this sentiment will help you reframe this situation (and potential conflict?) in a more objective light: People can't see your growth past where they've grown themselves. It sounds like they're projecting their struggles onto you, even if it's more unconscious than intentional. Like you said, I believe you're spot on in saying your family has a "scarcity mindset" and think you would love Carol Dweck's book, Mindset: The New Psychology of Success.

If I were in your shoes, I would accept that I cannot help someone in a "fixed" mindset decide to expand their horizons and cultivate a "growth" mindset (concepts Dweck describes in her book – I've linked an article that summarizes these terms HERE). Additionally, I would focus on meeting like-minded people with a growth mindset, building skills necessary to my desired field, networking with people in my dream field/industry/role with informational interviews, networking/ charity events, post-graduate career programs, etc., and keep the parents on a semi-information diet.

Share information on your budding career on a "need to know" basis and news you know they will be delighted to hear. Reach for the stars with your career and life goals. Just don't let small-minded people ruin your exciting milestones ahead because they're afraid to see outside of the thinking patterns that have kept them emotionally safe for decades. Let them know you're doing well and happy with what you do. Once any bills you need to pay are paid independently, what you decide to do with your time is none of their business.

Hope this helps xx

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scrapyardboyfriends · 8 months

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I honestly think out of the main British soaps (Eastenders, Hollyoaks, Emmerdale, and Coronation Street), Emmerdale may be the worst out of the lot rn. I feel like the other three soaps have AT LEAST one or two storylines that are kind of interesting and keep people watching, but Emmerdale just doesn't have anything! It's so boring. I watched the national television awards and even with the brief snippet they showed of Emmerdale, it looked like the most basic and boring soap out of them all. Not to mention that Emmerdale's ratings have lowered and the buzz around the show is poor compared to the other soaps, even Hollyoaks which has always been the underdog. I've lost so much interest in the show, I've basically stopped watching. They really need a huge overhaul. I just hope they're starting to realize that a big change needs to be made. I think the best way to do this would be to completely start fresh with new showrunners. Eastenders had a huge overhaul and even though the show is not my fave, they've done a good job at starting fresh and creating buzz for the show again.

I'm glad they didn't win anything at the NTAs last night. They certainly didn't deserve it. I feel like they're just floundering right now. They really do need a complete overhaul with someone coming in with a fresh vision and plan for how to rehabilitate the show.

I haven't watched in over three weeks now. I mean that's also cause I kind of fell down a Red White and Royal Blue rabbit hole and suddenly had new tabs to refresh but also because the show is garbage and there's really not a single storyline that I read about that makes me want to actually watch.

I have zero interest in this Lydia story because I just don't think it should be happening in the first place. It's bad enough that it's yet another rape story but it's that on top of her being basically off screen for months and then coming back not only to this but to revisiting the whole stillborn baby plot too. It feels like they're just stuck with all of these characters and only know how to give them one story and so they just continually go back to that well and pile on more misery and it's exhausting.

I'm annoyed with what they're doing with Gabby. All they do is have her throw herself at unavailable men. At some point, maybe it would be nice if a guy actually liked her back. Radical thought. Maybe her character could actually grow?!? Not to mention, her continued hatred of Nicky and trying to screw him over is just boring. Everyone else has moved on. It's not like he wasn't being manipulated into it all anyway. I wish they'd just had them become friends.

Anything with random plot gangsters is a no go for me. The fact that it also involves Nate is just doubly bad.

I truly could not care less about Amelia.

I know the Cathy actress needed a break for exams or whatever so they shipped her off in the middle of her story but the fact that they're bringing her back just to finally give her the diagnosis we've all known about for months and she knew she had already is just silly. I'd rather have her learning to adjust rather than lashing out over a diagnosis.

I might watch some of the stunt week just to see Chloe die if that actually happens. But I just could not care less about that love triangle. It's so tedious and boring and none of these people work together and I wish they'd just let everyone move the fuck on.

I can't believe they're going back to the David and Victoria well for his exit. They truly have nothing to do with these characters. It's just sad.

I think the only thing right now that might get me to watch again is if they actually brought Amit in for Jai and Suni. The fact that they killed Rishi off and then the whole story seemed to just die with him is so wild to me. I have to assume that it's going to come back but it's just so dumb that Jai spent his last weeks with Rishi hating him for this lie and then turned around and decided he would just continue the lie with Suni. It's kind of ridiculous. And while I feel like it all has to come up again and they have to bring in Amit eventually, I could equally see it being forgotten about entirely because these people suck that much.

So yeah...they really have a whole lot of work to do.

#emmerdale complaints corner

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doc-coyote · 1 year

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On December 3rd of last year, my mom was diagnosed with cancer. Please understand that she is okay, now, she's doing great. But for months leading up to this diagnosis she was in intense pain. The doctors finally figured it out and told her they would do their best to take care of her and they did. What they wouldn't tell her until she was several months free of cancer, when she was diagnosed, it was so bad they thought she was as good as dead.

They only told her this when she had been the best recovery any of these specialist have ever seen. She began chemo as soon as possible. My dad became her primary caregiver and I was her secondary. She went through chemo and then they stopped it in April to let her heal enough to have surgery to cut out what remained after such aggressive chemo. Chemo was miserable. She'd basically get a few days of normalcy only to have to return for her next session.

As the chemo and surgery days were going, they discovered the cause of my mom's cancer. The big one was ovarian cancer but then they also found a dime-sized bit of lung cancer, my mother has never smoked and avoids smokers at all cost. It was genetic, a mutated BRCA2 gene, this is one of the genes that is supposed to stem cellular growth and stop cancer from happening. If you have ovaries, a mutated BRCA2 is bad news.

This gene mutation means she's susceptible to other cancers, she's already got a full double mastectomy planned for once her post chemo treatment is over so she doesn't have ticking time bombs on her chest. The three of us, her kids, got genetic testing to see if we carried the BRCA2 mutation. We don't, had it been me or my brother, it'd have meant early and regular prostate checks. Had it been my sister, she'd be looking at a full hysterectomy like mom had just gotten AND then my nieces would have had to be tested as well. Again, thankfully, that isn't the case for any of us.

This last year has been very long. I was up at all hours for months, on call for my parents. Helping whenever I could. I honestly would keep doing it as long as it means she's fine. She is doing so well that doctors debate studying her for this level of recovery. She's got a few more months of post-chemo and then once she's deemed recovered from the treatment, the masectomies, likely in the fall. She has been completely cancer cell free for months now.

My dad was always a good cook but his skills have quadrupled, bare minimum, from this. Since my mom gets tired quicker now, I've become his TV and movie watching buddy. My nieces love this fact. I'm often still over at my parents' place to help and sometimes just to see how they're doing and hang out. The feeling from last holiday season and this one is night and day.

I'll be going over there on Christmas day to hang out, likely watch a movie with my dad and give them and my nieces presents. My dad has been using an unused umbrella stand he cut as a rolling pin so I got him a real one since that umbrella stand was never meant for this. My mom has wanted new slippers and she even showed me the direct ones she wanted.

My great-grandmother on my father's side lived to be 106. I was six when I met her, she died shortly after that. She got pneumonia on the trip to visit. This locked something in my mind: our family live up to 106. My mom has joked that when I told her this at that age and having seen all we've been through, I might have locked, not just my mind, but reality as well. My mom is 66 this coming March, my dad just turned 67 last month. Roughly 40 more years here for the both of them. I'll be 37 in February, so just shy of 70 years left for me. I sure hope we can all live with that.

I'm just glad my mom proved a bunch of experts wrong just by being her. She said she's focused on the positive as best she can to get through this. It's almost the opposite of how I survive. I want to be like that. But spite and anger can keep me going when hope is lost. She says I've always had back up plans so that makes sense for me. In October, the father of an old friend, died. His dad was diagnosed with cancer several years ago. I'd often thought of him with this all happening with my mom. Hoping his treatment and health were doing better. I'd known his dad for twenty years, he was a few years younger than my parents. This has been one very long year.

I guess I tell you all of this just to say that I love you all. Since the pandemic started, I've begun ending interactions with friends with I love you. I've always done this with my parents so it wasn't difficult to spread it to my friends. So easy was it that I've accidentally said it to strangers like bank tellers and cashiers. I don't ever expect to hear it back, I don't mind if people don't feel comfortable sharing those kinds of feelings but I just want everyone I know to know that they are loved by me. I have been in mostly lurk mode on this site for years now. Liking posts and maybe sharing photos here and there. So, I love you, dear reader, even if you never made it this far in all this writing. I just felt like I should post this here.

#cw cancer #cw death

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carrotzcake · 2 years

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Stuff 'n Things from today

I had my second-to-last session with my therapist, as she's leaving her practice (and outpatient altogether) to a new position in crisis response. I'm happy for her and she will do well there-I know because she's dealt with my crises with patience and understanding in a way I've never experienced. she's literally the only therapist I've ever seen for this long, the only theraputic relationship that has run its course, versus I've relocated for school/work/various levels of care, or just didn't have a good fit w/ the provider. I have mixed emotions; we'll see how next week goes.

I made a slightly more challenging version of my usual dinner. which would have been fight, except my 2 roommates and my roommate's partner were also in the kitchen at that time, which, in itself, is a rarity. I felt exceedingly uncomfortable with my measuring and portioning; I could tell the aforementioned partner thought it was weird-maybe they all did, but I was glad they didn't say anything. I've been able to disclose my bipolar diagnosis and general vulnerabilities/trauma to my roommates and they've seen me overindulge in alcohol, so I don't think it's unreasonable for them to make the leap to eating disorder-if they know anything about EDs or mental health which, since they're both in therapy, they do.

I can't help but feel judged though, stigmatized, othered. I know it's not their fault-it's based on my family history, repeated borderline traumatic experiences with roommates, social/meal related anxieties.

I hesitate to use the word proud of myself, but I managed it well, I think. I still ate the food. I took a little mental health walk after, followed my a shower since I was all sweaty and that helped me clear my head a little, even though I feel bloated and the nakedness in the shower was a little disconcering. I'm still going to have my evening snack, 'cause it's something I really enjoy, albeit safe.

my therapist said today that I really seem to be feeling my feelings but in a stable way-more authentic and embodied, which I kind of hate//am uncomfortable with but hopefully I will adjust.

my plans for the night got cancelled ('cause I told a guy I wanted to be just friends and he bailed 🙄) so I'm just going to relax and maybe watch a movie.

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babytowntm · 4 months

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So this is Christmas, and what have you done? Another year over, and a new one just begun

Christmas has been over for two days now and it all feels very weird. My christmas was fine this year, no hiccups, no fights, no angry tears and moreover no family feuds.

Which is a first. Even my boyfriend told me he felt comfortable and like the ice was broken for him. I'm quite glad about that if I'm honest.

I'll be celebrating new years with some friends this year and their pets. I already got some sparklers gifted to me.

Also gifted to me : two new vinyl records ( one from benny goodman and the other are chart hits from the 80s and 90s). New bedsheets which are so cringe I'll probably never use them* and a panini press to make some delicious "squish buns".

I've also gotten an adorable hamster plushie, a sunflower pillow, a new bookmark as well as some ice skates and a few gift cards for various book shops.

(* to clarify : My mother gifted me some Rainbow High bedsheets and they depict every character on them. Whilst I am in LOVE with the dolls, how they're made and how they look, my mom thought I would love some merch as well- which was incredibly sweet, but I'll probably never use it. I'm not THAT into the fandom).

This year has been quite the struggle and for the most part very stressful. I'm glad it's over honestly. My mother is still sick and has been struggling with her knee injury quite a lot. I hope it is something that can be fixed and not a diagnosis like arthritis.

What else? - I noticed that, despite my sisters claims, she' not really in a tough financial situation. She just doesn't know how to budget properly with the money her hubby provides for her and the kids. She constantly shops brand name items, buys useless kitchen gadgets for 300 bucks she'll never use and doesn't see anything wrong with that. Her husband seems like he's at the end of his rope, but he didn't say anything during christmas dinner thankfully.

My other sister is now pregnant with her third child. I honestly do not want to go into detail on why it is a bad idea to concieve another child with an ex-husband who you just divorced this year, and called it quits with like three months ago during a "fresh new start". It's just plain stupid all around. Only up side is, my oldest niece, will finally recieve a sibling who truly loves her. And not a spoiled brat like her younger sister is. God I hate this kid, she drives me up the wall sometimes. (Example : "Grandma,you're not allowed to take a picture under the heart shaped fairly lights, cause hearts stand for love and you don't have anybody who loves you", is a real thing this little brat said to my mother).

But aside from that, let's focus on the positives. i've been drawing a bit more and work has been fun. I'm in the process of designing a few characters but I'm not entirely fulfilled yet, so I'll only post the girl character here.

I hope whoever reads this feels a bit better, and I hope that sharing a few details out of my life lets people know they are not alone. Life has its ups and downs and I think it is important we don't forget that from time to time.

#diary entry #digital diary #writing #dream journal #creative writing #diary #christmas #feelings #drawing #digital art #sketch #character design #wip #art wip #current wip

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thecolordemon · 4 years

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Haha hi :) I already asked but I wanna do it properly here. So, can I request headcanons abt the brothers reactions after knowing that MC had an incurable disease and they're gonna die soon? Thanks! 💕 (Btw I LOVE ur drawing)

Of course you can😊 It will be my first time writing Angst in the english language🤣😅 but I hope you'll enjoy it either way because who doesn't like to suffer a little bit? @flyme--tothemoon I added some shortstorys to the headcanon because...I couldn't help myself.

Request: Headcanons-How would the brothers react after knowing that MC had an incurable disease and that they're gonna die soon?🥺😭

⚠️Angst, Sadness, mentions of illness and death⚠️

*Lucifer*:

he noticed some sickenly sweet scent lingering over your small frame since you arrived in Devildom

but he couldn't put his finger on it

he never lived among humans how could he know?

he couldn't

and that's the whole point

he asks you about it during having dinner with all of the brothers

when your laughter dies down everything else turns quiet too

he knows immediately that something is wrong

"Did someone else noticed it too?" you ask without looking up

they nod

"Well...I guess...I have to tell you something."

Angsty/Sad Short story (other brothers below):

They all looked at you with big eyes. Filled with questions and worries because of the sad little smile that crept on your face and conquered your lips like a dark sky swallowing the sun. All of them noticed that sickenly sweet scent over your normal aroma. They just didn't thought that it would be such a big deal... "Well...I guess...I have to tell you something."

You cleared your throat and put down your cutlery. It was weird...I kind of felt like the day where you got your deadly diagnosis.

But this time you were the doctor.

And your beloved demons were the patients.

You knew that you couldn't hide it from them forever. Being here was like a daydream and it made you forget your disease a little bit more every day. Living with the demons brought so much new adventures in your life that the illness seemed so far away. It was like you left it at home. In the human world. Somewhere where it couldn't reach you. Throughout the day you never wasted a single thought about your approaching death. And why would you? Death was unavoidable. In the end everbody dies...Just for you it meant, that death would greet you a little bit sooner.

"Two years ago...I fainted. I was not feeling good for a...very, very long time after this. And it did not get better. I thought I hit my head a little bit to hard on the concrete. I...vomited very often and that one night my parents took me to a hospital because of it. They wanted to make sure that I'm okay..." You stopped and looked down at you fingers which were intertwined with the black tablecloth. This night was branded inside your mind like a tattoo you never asked for. Neither did you like it. The brothers did not dare to interrupt you. You could just feel them all staring at you. It was so quiet...so terribly quiet.

"It truned out that...I have a very dangerous disease." you continued. The swallowing felt so much harder now...like something big and bitter was stuck in your throat. "And...sadly...there is no cure..." The bitterness stung in your eyes and you had to fight back the hot upcoming tears. The hopeless and shocked faces of your family were something you could never possibly forget. And right now all of the brothers had this exact same shattered expression on their faces. You bit your bottom lip and your nails digged into the soft skin of you thighs.

"...Is it...deadly?" Lucifer asked and his voice sounded oddly thin. For a little while you did nothing but to stare into space. You did not want them to see you cry. Not when you had to be strong for them again...but then you nodded.

"yes." you breathed. "Yes, it's deadly. They said I have 3 years left-"

The following opressive silence was broken when some of the brothers shifted uncomfortably in their seats. One of them dropped a knife. But nobody saied something. It was like some higher power turned the volume of the universe down. 'Well-' you thought to yourself. 'Maybe this is what shock sounds like...' When you forced yourself to look up, the effects of your confession showed.

All of them were pale. Nobody seemed to breath. Nobody talked. You could see them falling when you looked into their eyes. They were all being swallowed by the big black hole that was your disease and there was no safe shore in sight. You broke them...

All of them.

"I'm so sorry-" you whispered. "I'm sorry for doing this to you." None of them reacted. You couldn't stop the tears from flowing down your cheeks anymore. The salty liquid dribbled over your warm skin like raindrops over glass and ran down to your chin. "I wanted to tell you but--I couldn't-you all made me feel so good that finally I stopped worrying about it-I didn't mean to hurt you--please forgive me-" The sobs came out of your mouth like little hickups.

'They hate me--they hate me for breaking them-I'm a terrible person-'

Lucifer suddenly stood up. His jaw was clenched and his hands were balled into fists. He shoved his chair back and walked around the dinner table until he stood before you. Sadness and anger radiated of him like a upcoming thunderstorm and it scared you.

Would he hurt you? Would he send you back? Would he banish you from the Devildom?

You thoughts were interrupted when he suddenly embraced you in a very thight hug. His fingertips digged deep into the flesh of you back and he hold you so close as if you were going to disappear right on the spot. It took your breath away. "L-Lucifer?-"

The avatar of pride trembled. And there was something wet in your hair...was he crying?! Finally he spoke. His voice broken like a shattered mirror. "You're--telling us--that you're going to die--and still you're-apologizing for it?!-" His grip thightend. "I thought you would hate me now--" you cried desperately. His hug send shivers down your spine. "MC, you're part of our family-We could never hate you-" His voice broke again. "I'm the one who needs to apologize! I ripped you away from your human family! While you have such little time left-I brought you here without checking your whole background-my research was horrible and icomplete-I am the one who has to apologize! Not you! Not you!!" He grabbed you by your shoulders and now you were able to see it. He was really crying. Lucifer, the avatar of pride, was crying. His crimson red eyes were glassy and shimmered with so much regret.

"No-No don't say this Lucifer, please--I'm so happy here--this is my home too-I'm so glad I got the chance to meet all of you-" Your hand reached his wet cheek and he shivered when you did so. "You all made my time so much better than I could've ever imagined-And I'm so grateful-" You whimpered and burried your face in Lucifer's red tie. Your attention was pulled towards Mammon when you heared his sobbing.

*Mammon*:

"This--this is not fair--" Mammon stood up too and he trembled like an earthquake was running through his body. "Finally I meet someone who is nice to me-someone who listens to me-someone who doesn't treat me like shit or like I'm dump--and now-" His thin voice broke in a shaky cry. "I fucking love you-" He broke down and fell to his knees, his face twisted in deep hurt and despair. His glasses and cheeks were already covered in hot, steamy tears and his hands fisted into the rough carpet. Satans hand touched his back but even he did not know what to do. It was a sad single try to calm Mamon down but it didn't work. "Mammon--" you breathed with a hitching voice while still beeing hugged by Lucifer. "I'm sorry-"

"QUIET APOLOGIZING, WILL YA?!" he screamed and then went back to crying hopelessly. His horns showed. He was interrupted by Leviathan's weak voice.

*Leviathan*:

"I-I don't understand-", he whispered and stood next to the quivering Mammon. He looked like he saw a ghost. He was so pale that it looked like he was starting to disappear. His eyes were red and the tears streamed down like little waterfalls. His small frame trembled uncontrollably and his hands were deep inside his pockets. "We were having so much fun together-we were staying up all night together to play videogames-and now this all is--ending?" A new wave of tears gushed over his face. "This wasn't healthy at all--I hurt you-I didn't knew--I-I'm sorry-" His fingers fisted into his lilac hair and he pulled harshly as if he tried to wake himself from this nightmare. "You're my friend---" Asmodeus tried to stop him. "You will get bold-stop-" But he was also not in a good condition. Neither was Satan.

*Satan*:

He normally really payed close attention to his mimic and gesture. But right now...He couldn't even think straight. It was clearly visible that he was deeply upset and his left hand massages his torso like he had a heart attack. "MC-why didn't you tell us sooner?-" There were tears appearing in the corner of his eyes. "I read so much--maybe we could find a magic cure-I newly read a paragraph about-" But you interrupted him right away. "Satan--I know you want to stop it but--there is no solution in no book-I talked with Simeon about it-I asked if he could miracle it away--but he couldn't. He said that only guardian angles are allowed to do such a thing--and they have to be very powerful to do that-and since there are people on earth living under worse conditions-" Your voice broke and Satan looked away in shame when he couldn't stop the tears anymore. He hated not being in control-He would lose you-.

*Asmodeus*:

"God does not throw dice-" Asmodeus whimpered and everyone looked at him. His beautiful eyes were red and puffy from all the crying and not beautiful at all. It looked like he had a terrible allergy against something unknown. But right now he couldn't care less about his appearance. "That's something I always hated about god--They say there is a reason for everything but they won't tell you an actual reason--and then you're still stuck with your problems all by yourself-" He cried out in despair and hid his face behind his fingers. "-without a solution-" he added with a very thin voice. That was just to much for him and he had to cuddle up to Satan for more support. "How can they leave you to die--you-such a perfect human being like you-you should be the top of their creation-how is this possible-." His pink painted fingernails clawed over his flawless skin and left red stripes. He looked like a locked up animal-trying to break free.

*Beelzebub*:

Beelzebub is a quiet soul by nature. Not a man of big and a lot words. And now he seems even more quiet than before. He can't wrap his head around this new, horrible informations. He grew so fond of you, he needs you, you make him feel better-Fuck it all you brought his brother back! And now you're going to be punished with-Death?! That's not fair at all-that's not okay-he can't lose you-not like he lost Belphie-not like he lost Lillith-he-. With big steps he walked towards you and Lucifer. He towers above both of you like a big mountain that's ready to collapse. Without hestiation he pulls you and his oldest brother into a crushing hug. Tears dribble down from his face into your hair and mix with Lucifer's tears. "We can't lose you MC-your family-family means that nobody gets left behind-."

*Belphegor*:

He is the calmest of his brothers. At least it seems like that. He is just sitting there processing what you just said. You are going to die. In less than a year actually. You're going to die and this means that you're going to leave. His eyes flutter in confusion. He was never upset about humans dying. That's what they do. They live, they die. It's that simple. He knew that. He always knew that. He also knew that you were going to die. One day.

...But why so fast?! Why so damn fast?! His heart beats harder, nearly bursting with anger. His tail and horns appear and his whole demon form starts to mainfest in front of you and his brothers. "No!!", he shouts. "I'm not having this! We need to do something-we-" His eyes land on you and that's just to much. "Who do you think you are?! Huh?! You come down here and wreck our worlds, you live with us, you eat with us-you improve our lifes-and-now--" His tail flinches with agression. Belphie's eyes are drowing in tears as his angers makes place for the deep grief that takes over his whole body. He also, like Mammon, falls to his knees. "You can't leave Mc--I need you-"

(Okay I'm gonna leave now, I cried a little bit while writing and...yeah...maybe I'm just sensitive🥺 I hope it's angsty enough though...)

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adhd-adept · 3 years

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hi! i like your posts! they're real helpful

anyway a thing i need help with

i want to ask my dad for therapy because i think i might have adhd? and also some other shit

so basically

(this is going to be a long post)

back in summer 2020, i thought i might have adhd because i was reading some comics from adhd alien and the signs of adhd she shared seemed eerily familiar?

and i did some research and more signs came up and i thought i might have them?

and i found a therapist who specialises in adhd and other issues

but when i talked to my dad about it he was all "ADHD is only hyperactive idiots who are useless without meds" and he yelled at me for a while and I'm now basically scared of mentioning the topic up ever again

he brought me to some sessions, but i think once he said it was "so the therapist tells you you don't have adhd"?

anyway after the summer ended i couldn't get therapy again because school and busy

with the 2 week spring vacation coming up i was thinking of maybe asking him again? but I'm really scared and he probably won't take it seriously again...

signed,

an idiot

Hey! Thanks. I’m glad I can be helpful. I wanted to answer this right away, but it took me a little time because this question deserves a thoughtful response. This is going to be a long post.

[If anyone with more experience in situations like this has advice, I would welcome suggestions]

First things first! I don't think you're an idiot. This world can be hard to navigate even in the best of times, and I will never think you're foolish for needing a little help with anything that that entails!

Looking for a therapist is a great start! I’m glad that you are taking yourself seriously and taking steps to get help. That can take a lot of courage, and I’m proud of you for it!

Know that it may continue to take courage, and persistence - it can be really difficult to get an official ADHD diagnosis. I definitely have ADHD, and it actually took two tries when I got diagnosed around age 12, as the first doctor thought I had been perfectly attentive during the meeting and thus could not believe I was struggling with inattention elsewhere. My friend in her early twenties has been attending periodic doctor and therapist sessions for a couple months now, because the first doctor didn’t take her seriously, the second said she clearly had ADHD but sent her elsewhere for prescriptions, and the doctor they sent her to insisted she get a second opinion. She is finally starting to get accommodations, but it’s been an ongoing effort.

And you may simply not get along very well with your first therapist. You can always try reaching out to another. It can be a long process, and I hope saying that does not discourage you because there is a lot of good that comes at the end of that process; specifically, a better understanding of yourself and access to some resources that can help you seek accommodations for the things you struggle with.

It sounds like you’ve done your research on therapy, though. If you want any help with looking for a therapist, I am happy to help, (or at least try to). But it sounds like what you’re asking is how to approach the subject with your dad?

You’ll have to take some of my advice from here with a grain of salt; I’ve never been in the specific situation you’re in now, and of course I don’t know your dad as well as you do. But in my experience, rephrasing a request can do a lot to make it sound more reasonable.

I think the first step is understanding where he is coming from. Again, you have met the man and I haven’t, so this is more suggestion and guesswork than any kind of statement.

It sounds like your dad has a significant bias against neurodivergence. But I think it does matter WHY he feels that way. I can only imagine that it comes from a lifetime of hearing those things about ADHD from the people around him, and it will take time for him to reverse that prejudice. I feel sorry for him to have grown up in that hostile environment, and I am sorry that that hostility is being carried through to you.

But the result is that he thinks there’s something wrong with having ADHD. Of course, that isn’t true, but no parent wants to believe there’s something “wrong” with their child, and he will probably be resistant to the idea for as long as he believes that there is.

More than that, I think parents don’t want to believe that, if there IS something wrong with their kid, it might have come from them. A child twisting their ankle in PE class or getting bitten by an ant is one thing - it hurts to see the child in pain, but it isn’t their fault. It’s much harder for a parent to see their child suffer because of a hereditary condition, because I think there can be a lot of guilt associated with that.

On top of that, if he’s been told that ADHD is a terrible thing, it might be disagreeable to him because if you have it then maybe he has it too. People don’t want to believe there’s anything wrong with themselves either.

I don’t know if that’s, on some level, why he reacted the way he did - and even if it’s true, I don’t think any of this justifies yelling at you for it. Nothing justifies that. And I want to be clear that it shouldn’t have to be your responsibility to figure out why he feels the way he feels - that should be on him, and it’s unfair to you to have to work through his issues on your way to getting the help you need. This isn’t necessarily the best or only approach. But trying to at least figure out why he feels the way he does might help you figure out how to approach the subject again.

Maybe even ask him where he got his impression of ADHD, if it does not feel like doing so will start a new argument. (Maybe don’t mention the part where you’re asking because some stranger on the internet is trying to psychoanalyze him.) But I find, personally, that conversations go better when I can approach them with patience, and I have more patience when I make an effort to remember that the other person’s reactions have to come from somewhere, and if I can at least start out believing that they are misinformed rather than actively hostile.

I think a good start would be to try educating him about ADHD and see how that goes. Anything might sound scary because it is unfamiliar; or, worse, it might sound scary because it sounds vaguely familiar even if the only information you know is that you think someone said it’s scary.

An aside, to give an example: There was a meme a while ago where water would be referred to as “dihydrogen monoxide” and framed as a dangerous thing with vague-but-technically-true statements such as “it’s a common byproduct of chemical reactions,” and “it’s found in our sewer systems”, or “it has the highest pH value of any acid” (you may recall that the strongest acids are those with a low pH value).

I think it’s easy to do the same with neurodiversity. If all you know about water is that it’s a chemical, it may sound scary. If all you know about ADHD is that it’s a mental disorder, it may sound scary.

Talking with him directly may be better than sending him articles - they tend to start with phrases like “mental health disorder” and “chronic condition”, or big (scary) jargon words that you might want to avoid if you want it to sound approachable (I mean, even the “Simple English” version of the Wikipedia article has the word “neurodevelopmental” in the first sentence).

I think it’s important for him to know that everyone’s ADHD experience is different - symptoms can be strong, or they can be very weak, but even people with very weak symptoms may benefit from seeking professional advice. You can be very “high functioning,” and still find certain tasks more difficult than most people do, and thus benefit from help even if you don’t “need” it to achieve your goals or lead a “normal” looking life.

You might tell him that a lot of ADHD treatment is about paying attention to your own behaviors and learning what works best for you - that even if you do not have ADHD, you may have some experiences in common with people who do, and that seeking a therapist who specializes in ADHD may help you find someone with the kind of attitude you are looking for; maybe you want someone who will be especially patient, and who will be prepared to take you seriously with the symptoms or traits you do have.

After all, most people can understand that you don’t have to have clinical depression to benefit from some of the behavioral things often recommended to people who do, such as getting regular exercise and more sunshine. You can do things that improve your mood even if you don’t have diagnosed clinical depression.

Similarly, if you are seeking help with some things that people with ADHD struggle with - organization, time management, staying focused - a therapist who specializes in ADHD may be a good fit for you for that reason alone, even if you don’t have it.

And yeah, it sounds like he doesn’t want you to have ADHD, so I don’t think there’s anything wrong with saying “even if I don’t have it, talking to a specialist can help me rule that out,” if that’s what helps him feel more comfortable with you getting an appointment. Again, it will take time for him to overcome the negative impression he has now, but at the very least, if he forms a positive impression of ADHD therapists he might not be so hostile about ADHD itself.

Maybe remind him that there can be a lot of overlap between ADHD and other experiences, but that it seems like a good place to start seeking help because it is a relatively common cause of some of the things you’ve experienced.

Know how much you would be willing to compromise before you have this conversation - would you be okay with getting a therapist even if they do not specialize in ADHD? Would you be unlikely to get an appointment if he made it conditional on something like maintaining good grades? Have a clear, tangible goal in mind; while you may leave room for uncertainty in your diagnosis until you speak with a professional, you should try not to leave room for uncertainty in what you are asking for. Know what you want - a session (or a number of sessions) with a therapist - and have your reasoning for that ready, maybe even written down. People tend to take you more seriously when you can demonstrate that you’ve thought something through.

If you say you think you have ADHD, I believe you. But regardless of that, you have recognized that there is something you need help with, and you are taking action in response. I hope that, at the very least, if your dad does not want to take the suggestion of ADHD seriously, he can at least take you seriously when you say that you need help.

And you will get help. You are moving in the right direction. Don’t lose sight of that.

I hope I’ve answered your question! If this is hard to read I can maybe come back and re-write it as a set of bullet points, maybe suggestions of things to say, but I felt that in the case of more personalized advice it was important to address the context of my advice. If you needed more specific advice, feel free to clarify. And of course, if you have any other questions, I’m always around.

Best of luck!

#long post #please let me know how this conversatipn goes #or if you want more help planning for it #you can DM me and we can talk about it in more detail #i would want to know more about what youve talked with your dad about before #how you usually approach sensitive topics and how you expect him to respond #before i could give better advice on the wording i would suggest or anything like that

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podcastdx · 5 years

Text

S1E1 Kidney Transplant

PodcastDX Kidney Transplant Episode/ Transcript

Jean Marie [00:00:16] Hello and welcome to podcast DX. This show that brings you interviews with people just like you whose lives were forever changed by a diagnosis.

Lita [00:00:26] I'm Lita,.

Ron [00:00:27] I'm Ron.

Jean Marie [00:00:28] And I'm Jean Marie.

Lita [00:00:29] Collectively we are the hosts of podcast dx. This podcast is not intended to be a substitute for professional medical advice diagnosis or treatment. Always ask the advice of your physician or other qualified health care provider for any questions you may have regarding a medical condition or treatment. And before undertaking any new health care regimen never disregard professional medical advice or delay in seeking it because of something you have heard on this podcast. I am here with Darnell and Rodney and they're siblings. Whom have both received kidney donations at least once.

Lita [00:01:13] Hello and thank you for being on our show.

Danell & Rod [00:01:16] Thank you.

Rod [00:01:16] Glad you're here.

Lita [00:01:18] How long has it been since your transplants Danell years was a long time Right?.

Danell [00:01:23] Mine was in early April. I will be coming up on 17 years.

Lita [00:01:29] 17 years.

Lita [00:01:30] And you only had the one? Ok,

Danell [00:01:31] And only half one.

Lita [00:01:32] . OK. And Rodney?

Rod [00:01:34] My first transplant was in nineteen ninety four.

Lita [00:01:38] OK.

Rod [00:01:39] Second one was in 2010. Was that right?

Danell [00:01:46] Do you remember Lita?

Lita [00:01:47] No I don't actually. I don't. So 94' was the first one...

Rod [00:01:53] No. 2014.

Lita [00:01:55] OK. All right. So. What, what caused the first one to fail?

Rod [00:01:59] Well it's Darnell and my brother and I and Dad it's all the same "All Ports".

Lita [00:02:06] OK.

Rod [00:02:07] All Ports.

Lita [00:02:08] That's a.

[00:02:08] Yes it's an immune problem. Your body attacks your kidney.

Lita [00:02:13] OK.

Rod [00:02:13] Like some people have a problem with that their body attacking their heart.

Lita [00:02:17] Sure.

Rod [00:02:17] Our is our kidney.

Lita [00:02:19] OK so. Is there any new stem cell therapy or anything that can help you, like, alleviate this so that your kidneys are....

Rod [00:02:29] Well I wouldn't work on us anyway. You might get to work on somebody whose kidney isn't already shot.

Lita [00:02:37] OK. OK

Rod [00:02:38] But there's no bringing ours back.

Lita [00:02:40] OK.

Danell [00:02:41] Yeah, But I don't know about the, like the stem cell. I don't know. That's a good question.

Lita [00:02:47] I'm just.

Danell [00:02:48] Doing research into that to see, I mean you know they're using it for a lot of things now.

Lita [00:02:53] Right.

Rod [00:02:53] Well the stem cell research now I think is mainly trying to grow.

Lita [00:02:58] New ones?

Rod [00:02:59] New ones,.

Danell [00:02:59] Yeah.

Rod [00:03:00] But you know you can't you can't. Bring a rock back.

Lita [00:03:03] No. But I'm just concerned that from, you know, like the first one that you got. Failed because your body is still attacked it. Right? The All Ports attacked it?

Rod [00:03:11] Essentially. Well I'm not so sure it was that so much as just transplanted kidneys don't last forever.

Lita [00:03:21] OK.

Danell [00:03:22] I got like a, 10 year,.

Lita [00:03:24] Warranty?

Rod [00:03:24] well,.

Danell [00:03:25] Well for that's the average,.

Rod [00:03:27] For average. Correct. And mine lasted ten years.

Lita [00:03:30] OK.

Danell [00:03:30] Almost to the month.

Rod [00:03:32] Yeah.

Lita [00:03:32] And Danell, yours has been 17 years?

Danell [00:03:35] Yes I've been 17.

Lita [00:03:37] Where did you get the deluxe model?

Danell [00:03:38] I think I might have! (laughter)

Rod [00:03:39] Well I think hers was a better match than mine was mine was. Just a mediocre match hers and my brothers are both have pretty good matches.

Lita [00:03:48] OK.

Danell [00:03:48] Yeah they told me that mine was as good of a match as that one my kids had given it to me, so.

Lita [00:03:53] OK. OK.

Lita [00:03:54] So yes, so that that's probably important too.

Danell [00:03:58] Yeah.

Lita [00:03:59] And the, the last one that you got from me that one also failed.

Rod [00:04:05] Yeah.

[00:04:05] So now. You’re back on Dialysis?

Rod [00:04:07] Yeah, That one didn't last very long at all. I think with all the antibodies that I had from the first one it makes it more difficult to match the second one. And also Barnes did not put me on prednisone the second time around which I think had a lot to do with killing it.

Lita [00:04:28] Wow.! They didn't.?

Rod [00:04:30] No, they don't believe in prednisone,.

Danell [00:04:32] They don’t do it, So my brother, that had his out in Idaho which has just been about five years for him. It's never, never done the prednisone thing.

Lita [00:04:41] Hmmm, Well I know Gina just had her liver and she was on prednisone for probably 60 days.

Danell [00:04:49] Really?

Rod [00:04:49] Well I was on when they put my first one in I was on massive doses of prednisone but eventually got me down.

Lita [00:04:57] weaned you down.

Rod [00:04:57] To a maintenance dose. And I had that the whole time I had my first kidney.

Lita [00:05:03] I don't know if Gina's taking it still or not but I know in the beginning she took.

Danell [00:05:06] . Yeah.

Lita [00:05:07] A lot.

Danell [00:05:07] And they might have with Scott too (Scott is their brother in Idaho). But I know that really we can back from the long term use,

Rod [00:05:12] When I got the second kidney, of course they didn't put me on prednisone. And after a few months it started dying off. While, while it was deteriorating, I was put on prednisone for a totally nother reason.

Lita [00:05:31] . OK.

Rod [00:05:33] And it almost stopped the deterioration of the kidney. But at that point I was about 90 percent shot already.

Lita [00:05:42] OK.

Rod [00:05:43] I am convinced. If they had put me on the prednisone initially. Your kidney would have lasted me a lot longer.

Lita [00:05:50] Okay.

Rod [00:05:50] Because once I got on the prednisone the deterioration almost stopped.

Lita [00:05:56] But it was too late.

Rod [00:05:57] It was too late. Plus,.

Lita [00:05:59] Did you mention that to them? Like you know...

Rod [00:06:00] Well after is too late.

Lita [00:06:01] No. but I mean,.

Rod [00:06:01] But if I didn't realize what was going on.

Lita [00:06:04] Yeah. And I'm just thinking for future people you know like maybe they should change their ways.

Rod [00:06:07] yeah, well, tell them that, they don't want...

Lita [00:06:10] I know but, I mean, part of, part of education in the medical community I think is feedback from the patients so that they know what works what doesn't work.

Rod [00:06:20] What ended up happening then I had to have heart surgery.

Lita [00:06:26] Oh right.

Rod [00:06:26] And of course they had to have the MRI's with contrast, which is a big no no for.

Lita [00:06:33] That kills the kidneys.

Rod [00:06:34] Kidney Patients but at that point they had to do it and that finished the kidney off.

Lita [00:06:40] Sure. ok,

Danell [00:06:41] Did you, You had gone back on dialysis but you were still having some benefits of your kidney.

Rod [00:06:48] Yeah. I was still putting out.

Danell [00:06:50] We are convinced it was because he had gotten on that prednisone while.

Rod [00:06:52] I was still putting out a good bit of urine.

Danell [00:06:57] It lasted what? Maybe about a year?

Rod [00:06:58] Maybe yeah.

Danell [00:06:59] Just before you had to have your heart surgery.

Rod [00:07:01] Yeah. Finished it off.

Danell [00:07:03] Yeah. Even though he had lost a lot of the benefit from your kidney it still you know we continue to have some.

Rod [00:07:09] Oh I was still putting out about eight hundred milliliters a day, which I wasn't having to watch my fluid anywhere near like I do now.

Lita [00:07:18] OK, How often do you go for dialysis now?

Rod [00:07:22] Three times a week.

Lita [00:07:24] oh, ok, What. What symptoms made you realize, I know it's a long time ago when you first realize that you had problems but what symptoms were there that made you think I've got a problem with my kidney.

Rod [00:07:38] None. My, our father had kidney failure.

Lita [00:07:43] OK.

Rod [00:07:43] So in the process of they were trying to fight figure out why I had high blood pressure. I found out my kidney was already 25 percent shot 10 years before. They failed.

Lita [00:08:01] OK.

Rod [00:08:01] Completely.

Lita [00:08:01] So most you most many of these symptoms.

Rod [00:08:03] No. Most people do not realize what's going on until it's too late.

Lita [00:08:10] Hmm, So you're a little like high blood pressure a hidden thing right.

Rod [00:08:12] Your body compensates and people don't realize it's going, a lot of people, when they if they find out they have kidney failure when they're in the hospital. Because they get you get flu like symptoms they get feeling just totally run down. That's when they find out. I knew for 10 years ahead of time it was coming.

Lita [00:08:35] Because of your dad.

Rod [00:08:36] Because my dad.

Danell [00:08:37] Right.

Lita [00:08:37] And when your dad was diagnosed they found out that it was a genetic problem. Correct?

Rod [00:08:44] No.

Danell [00:08:45] Actually they didn't find out because dad was. He was just diagnosed with kidney failure.

Lita [00:08:50] OK.

Danell [00:08:50] They thought it was all brought on by hardening of the arteries.

Lita [00:08:53] OK.

Danell [00:08:53] Then Rodney when they had diagnosed him again just kidney failure. When. When I started showing signs. The doctor we all had the same nephrologists.

Lita [00:09:04] Right,.

Danell [00:09:04] You know he's like... hmmmm?

Lita [00:09:05] yeah yeah.

Danell [00:09:07] So actually I went and got the biopsy that diagnosis with the All Ports.

Lita [00:09:12] OK. And what is all ports Exactly?

Danell [00:09:14] It's a slow. It's an auto immune but it's just basically a slow deterioration of the glomeruli of the kidney, which is just basically the body.

Lita [00:09:22] The filter.

Danell [00:09:23] Yeah.

Lita [00:09:23] OK.

Danell [00:09:24] Yeah it's a filtering system of the kidney, and there's you know.

Lita [00:09:27] They haven't come up with a cure for that.

Danell [00:09:30] That's one of the things that happens.

Lita [00:09:32] and all of your, You have one brother?

Danell [00:09:36] Mhmm.

Lita [00:09:36] Besides Rodney? and he has it as well.

Danell [00:09:38] Right, He has. Yes.

Lita [00:09:39] And he's had a transplant.

Rod [00:09:40] He's had a transplant.

Danell [00:09:42] He had a living donor transplant.

Rod [00:09:44] He was eleven years younger than me. So. Plus I, it progressed fairly rapidly. For me I went,. I went on dialysis when I was fortytwo. They made it closer to 50.

Lita [00:09:58] OK.

Rod [00:09:59] Our father was 50.

Danell [00:10:01] Yeah.

Lita [00:10:05] So umm, just to let the listening audience know, umm, possible symptoms are decreased urine output. Fluid retention swelling in your legs ankles and feet drowsiness shortness of breath fatigue confusion nausea and in severe cases seizures or coma and chest pressure that's probably from the fluid.

Rod [00:10:31] Well like I said, most..

Lita [00:10:33] You didn't have, you just felt flu ish.

Rod [00:10:35] Most people do not realize that's going on until the last minute.

Lita [00:10:41] OK.ok,.

Rod [00:10:41] They. They get flu like symptoms. They feel like crap and they go into hospital and they. Well your kidneys have quit.

Lita [00:10:49] So then what relief do they have? At that point.

Rod [00:10:52] Emergency dialysis.

Lita [00:10:54] OK. So once you have the dialysis does that take care of the symptoms.

Rod [00:11:01] Largely.

Danell [00:11:03] Which is really kind of what happened with my dad. He just you know. Started getting very ill. I don't remember what symptoms he had. But then at that point they just have. I don't know. you know, They. Checked. His kidney functioning was all and decrease the numbers. Lab numbers were elevated. We actually took him down to. Houston to a hospital down in Houston and that's where they figured out what was going on and basically he was just in kidney failure. So they did emergency dialysis they put a graft in his arm but they can't you can't use that for a while. It has to...

Rod [00:11:46] Emergency dialysis. They put a port in your central vein in your chest and they use that, that's meant to be temporary. They don't like to use them long term. Because too much risk of infection.

Lita [00:12:01] Sure sure. Anything close to the heart is. That what. Well you got your heart eventually?

Rod [00:12:05] No. No. I just. Just another {unable to transcribe}.

Lita [00:12:12] That will be a podcast in the future.(laughter) OK. One thing that we like to discuss with the patients that we're we're interviewing is caregiving in the home. After the procedure and equipment that might have helped you to recover after the procedure. Now as a kidney donor I know that you know, there were some things that assisted me on my recovery but and on the receiving end what. What did you guys do to to help you get over the hump when you got home from the hospital?

Rod [00:12:50] I initially started doing peritoneal dialysis that as most people think of hemodialysis where they directly clean the blood peritoneal, they put a port in my abdomen, you put fluid in your abdomen, it dwells, it draws the poison, the chemicals off and you change the flood periodically. I did that for years.

Lita [00:13:24] oh, Now, Is that when you say the fluid goes in is it into a vein or is it just a cavity?

Rod [00:13:30] It goes into the abdominal cavity and it by osmosis it draws the stuff off. OK. The toxins and the fluid off in your body.

Lita [00:13:41] OK.

Rod [00:13:41] I did that all together eight years.

Lita [00:13:45] OK. And is that the one that you do at home?

Rod [00:13:48] That's what I do at home. Yeah.

Lita [00:13:49] So you. From what I remember you hooked yourself up to a machine at night and you just let it run.

Rod [00:13:56] Yes initially the first year and a half for my first transplant I did it manually and hung a bag of dialysate, it ran it into my abdomen, put it in leave it in here about three or four hours drain that bag out. Put another bag again. I do that three or four times a day.

Lita [00:14:18] And this is something that you could handle yourself. They trained you and you didn't have any problem doing this at home.

Rod [00:14:23] Right.

Lita [00:14:24] Because it sounds very.

Danell [00:14:27] It was,.

Lita [00:14:28] Technical. Yeah it sounds scary, It sounds...

Rod [00:14:31] I after the I lost the first transplanted kidney, I end up doing what is called a cycler, where the machine does that for you. But I was on I had to be on that nearly 11 hours every night and course you can't go anywhere until it is done.

Lita [00:14:54] OK.

Rod [00:14:54] Well after six years of that my second transplant, lost the second transplant, I started doing it.

Lita [00:15:03] Sure.

Rod [00:15:03] I never slept well. Now it works better for other people. It didn't, I was tired doing it, all the work that goes with it. All the supplies. It's a constant job. This with hemodialysis I can go to Matt.(?). Go to the dialysis unit three times a week. They run me for three and a half hours. I'm done, done for two days. You don't have to mess with it anymore.

Lita [00:15:31] So it's like an oil change.{laughter}.

Rod [00:15:33] Pretty much yes pretty much.

Danell [00:15:36] But as far as like after the surgery I actually I did very well. I mean I was only forty seven. I was I was active,. {lost audio}

Rod [00:15:48] Are you ready?.

Lita [00:15:48] Yeah go right ahead.

Rod [00:15:50] When you get your transplant it's like you have an immense amount of energy for a good year. After my first transplant I was just Energizer bunny. I was working two jobs, taking care of my kids, and sleep in about five hours a night. God, I had just an immense amount of energy. That's, you start to come back to normal after a while but your body has become so used to having no energy.

Lita [00:16:24] OK.

Rod [00:16:24] Once this happens you just feel great.

Lita [00:16:31] ok.

Rod [00:16:31] you feel, really great.

Danell [00:16:35] I know talking about symptoms before, It just all comes along so gradually that you don't realize you're feeling bad.

Rod [00:16:45] Yeah.

Danell [00:16:46] And then that you're tired.

Lita [00:16:50] It's draining.

Rod [00:16:51] Well that's it, after your, after your transplant and you feel so great. Then you realize how terrible you were.

Lita [00:16:58] You were before,.

Danell [00:16:59] Right.

Rod [00:16:59] Right.

Danell [00:16:59] And I also noticed things like my hair thickening back up after the transplant my nails getting hard after the transplant. Things that had started deteriorating maybe just over such a long period of time you just didn't notice it. Yeah. Afterwards you know after his first one, and then with mine, as far as recovery at home and action was very easy. I went back to work after five weeks and I'm a surgical nurse. So you know really very active and intense. You know. But we were both healthy. You know going into wealthy going into young and we had so many dialysis patients are on dialysis because they are diabetic.

Lita [00:17:42] OK.

Rod [00:17:43] And so they're fighting they're fighting that complication also. We didn't have that.

Lita [00:17:48] OK. So if someone had diabetes on top of the kidney failure.

Rod [00:17:53] oh yeah,.

Lita [00:17:53] They've got just another hurdle. That they've got to jump over

Danell [00:17:56] Right, right.

Lita [00:17:56] In order to heal.

Danell [00:17:58] Yes. Much more difficult in the healing process,

Rod [00:17:59] About actually .

Rod [00:18:01] About 30 percent of dialysis patients are there because they are diabetic.

Lita [00:18:06] OK. OK.

Rod [00:18:08] I worked for 10 years as a fireman on one kidney. Did great.

Lita [00:18:14] OK well one kidney working well I can tell you does, OK.

Rod [00:18:19] Oh yeah yeah.

Lita [00:18:22] I've got no complaints

Danell [00:18:25] We're not the only ones getting by with one kidney

Rod [00:18:26] Unless you think you want to be a marathoner I don't think you would notice the difference.

Lita [00:18:30] Yeah I would never do that,.

Rod [00:18:31] It would just be a slower recovery.

Lita [00:18:35] OK.

Rod [00:18:36] Cause You'd wear yourself out. But like I said as a fireman I didn't notice it.

Lita [00:18:42] OK. Are you worried Danell, that you might be up for another one soon?.

Danell [00:18:46] You know I was around 10 years because basically Rodney like I said lost year at 10 years almost to the month. But you know it's 17 now. My last doctor's visit down was down at Barnes, and I've just been doing so well they're like you know which I had been going there just once a year for several years. And they're like that come back for two years now I still get I get my blood drawn every other month and it all gets into Barnes. So they you know they're watching that closely but you know they're like to come back for two years you're doing great. Because I have not once had any concerns about rejection that they're like you know you can put this on.

Rod [00:19:32] Well and the better the better your match the fewer drugs you have to take.

Lita [00:19:37] OK. OK.

Danell [00:19:38] And mine also was I had a cadaver donor and she was a same age I was.

Lita [00:19:48] OK.

Danell [00:19:48] So you know basically I've got you know it's not like I { un-able to transcribe}.

Lita [00:19:53] Yes it grows with you, right. OK. I wanted to discuss a little bit about the the different regions that you can apply for when you're getting a, an Organ, and I know that Rodney your daughter posted an ad on Matching Donors dot com for the second one in order to actually expand your reach when you were looking for a donor.

Rod [00:20:22] Well it is when you get on the list you're waiting for them to find you a donor Matching Donors dot com, dot com as a way for you to find your own donor.

Lita [00:20:35] You're like advertising.

Rod [00:20:36] Essentially. Yeah.

Danell & Rod [00:20:37] Right. right

Danell [00:20:39] Yeah. We put a, you know, told all about Rod you know his his life as a fireman.

Lita [00:20:47] Yeah actually I remember. I mean you know my memory is pretty crap, {laughter} but I actually still remember how strongly the emotions hit me when I read your ad.

Danell [00:21:01] Awwe

Lita [00:21:02] That I said "why wouldn't somebody have given this guy one already, for crying out loud. Get him on the phone."

Rod [00:21:10] Well of course we never put this forth before you when you're on the list. You're waiting for someone to die.

Lita [00:21:18] Right.

Rod [00:21:19] It's not a question of. I'll give you mine.

Lita [00:21:23] Right. But the matching donors allows living.

Danell [00:21:27] Right.

Lita [00:21:28] Donors to donate a part of a liver or a whole kidney.

Rod [00:21:32] And of course my daughter was fantastic. She did all of that. I did nothing. She talked to different various people about me. At least two of them hinted around about being compensated which technically is illegal in this country.

Lita [00:21:51] Right. Right.

Rod [00:21:52] So she told them "Forget it". But she found you, or you found me.

Lita [00:21:58] Yeah. I found the ad and I was, and it was, it was convenient that you were in Illinois. There wasn't a lot of transportation involved. You know I can imagine that some people that are are looking nationwide it might be a little bit more difficult.

Rod [00:22:15] Sure,.

Lita [00:22:15] If you have to commute or whatever. But ours was perfect. How long were you on dialysis the first time before you got to the.

Rod [00:22:25] Before the first transplant I was on dialysis for a year and a half. They found me a cadaver. OK after the first transplant failed I was on dialysis for six years before I got together with you. That one only lasted 10 months. Right now I've been on dialysis about another six years.

Lita [00:22:50] OK. And Danielle how long were you on dialysis before I act.

Danell [00:22:54] Oh I never had to go on for hours. Oh OK. Was that on the transplant list because now they will put you on it before you get on dialysis. Back when Rodney first started you had to actually be on dialysis before they would put you on. Yes. OK. I I think they figured out hey if we can get him going before the dialysis so I put on a list and told that I would have to be on dialysis within a year and actually it was four months.

Rod [00:23:24] She was getting at the point she was getting pretty rundown.

Lita [00:23:28] So it was it was like getting close to where you would.

Rod [00:23:30] Yeah. It was real close.

Danell [00:23:32] There four months is just really even the doctors were like "you were on that list. how long?". Like four months.

Lita [00:23:38] Right.

Danell [00:23:38] I had a rare blood type and I think well some real rare but I was Rh negative. So I think that could have gone either way. Sure it could have kept me on the list longer or.

Lita [00:23:50] If nobody else can take it right.

Danell [00:23:52] . Give me that one kidney that no one else could take. So yes I was blessed in that it was only four months.

Lita [00:24:00] Have there been any dietary changes to either of you since the transplants have you had to do anything,.

Rod [00:24:06] Well once you've had a transplant. No. If you're on dialysis it's extreme.

Lita [00:24:14] As far as sodium right?

Rod [00:24:15] Sodium. The main thing is phosphorous and potassium.

Lita [00:24:20] OK.

Rod [00:24:21] Dialysis does not rate remove phosphorus and it doesn't do a very good job removing potassium.

Lita [00:24:29] OK. Are those good or bad?

Rod [00:24:32] Well they're.... You know.

Danell [00:24:33] They're bad, if they {un-able to translate}.

Lita [00:24:34] Oh OK. So the levels to be high. Right. And your kidney normally takes care of those.

Rod [00:24:39] Correct.

Lita [00:24:39] OK I see.

Rod [00:24:40] The phosphorus level if you've got an excess of phosphorus it settles in your feet and I have neuropathy in my feet because that has destroyed the peripheral nerve endings in my feet. So it's more difficult for me to walk potassium that gets out of whack. It messes up your heart. That can be real serious.

Lita [00:25:08] Sure. But they keep an eye on it.

Rod [00:25:10] And then they keep an eye on it.

Lita [00:25:11] And medication to adjust levels or the.

Rod [00:25:14] . Well that's why take massive amounts of phosphorus binders when I eat the potassium the dialysis will remove it. To some extent but I've got to stay away from my potassium fluids.

Lita [00:25:29] Sounds like you guys have to turn into nutritionists in order to stay healthy as I.

Danell [00:25:36] Basically eat just like you can. We each have one kidney one good working kidney. So I mean you know you have to be intelligent about it it's just as much as you would in it you know hey what do you want in your body. But yeah. That's the great thing.

Lita [00:25:51] Well that's good.

Rod [00:25:52] Like I can eat whatever I want.

Rod [00:25:54] Oh yeah I know when I had my first transplant I I would not. You do not know you're working on one kidney.

Lita [00:26:05] You mean you don't feel that.

Rod [00:26:07] I don't feel. And you're really no dietary limitations because of it.

Lita [00:26:13] Because the kidney's working well.

Rod [00:26:14] Right.

Lita [00:26:16] Are there any support groups or organizations that have been of assistance for either of you?

Rod [00:26:22] No,.

Danell [00:26:23] That we kind of chose not to. I mean basically that guy right there was our support group.

Rod [00:26:28] That's true.

Lita [00:26:29] Well luckily you had each other and you kind of get experience. Also with your dad going through it up before.

Danell [00:26:34] We've been through a lot,.

Lita [00:26:35] And you being a nurse I'm sure that helped.

Danell [00:26:36] Yeah. Yeah. There are you know support groups out there. OK. And the hospital would recommend them. Right. I'm sure Barnes and even at one point asked if I would consider you know kind of being a mentor. But that's a you know from central Illinois it's like a two and a half hour drive. So it really wasn't feasible for me to do it.

Lita [00:26:57] Sure.

Danell [00:26:57] but. Yes.

Lita [00:26:59] And how about through dialysis facility do you notice that anybody there that might need you know like encouragement or advice or

Rod [00:27:10] I don’t know,.

Lita [00:27:10] Not really advice but support as they're going.

Rod [00:27:12] Oh there probably is I'd like to Danell said, they they have people that you can do that with. I'm not a joiner. {laughter}.

Lita [00:27:19] Okay.

Rod [00:27:19] Leave me alone. {laughter}

Lita [00:27:20] Okay. How about medical equipment supplies or other tools that you've found particularly helpful when dealing with kidney disease.

Rod [00:27:33] No, other than, Like I said the peritoneal dialysis was a big burden. But I like I. That's why I like prefer the hemodialysis now because I can go to the unit get it done leave it. All I have to do is watch my diet.

Lita [00:27:56] OK.

Rod [00:27:56] And my fluids.

Danell [00:27:57] We're after this second one and that kind of started going downhill. And we're different things that you know at one point he had to use a walker and he got to the cane.

Rod [00:28:09] Well that was. I greatly blame the nephrologist I had at the time I kept asking him why is this happening. And he had no answer or he wouldn't give me one.

Danell [00:28:24] And you're talking about your being so bad.

Rod [00:28:26] Yeah. I was almost to the point of being in a wheelchair.

Lita [00:28:29] OK.

Rod [00:28:30] And when Darnell helped me we get got a neurologist. Twenty seconds he told me what was going on.

Lita [00:28:40] OK.

Rod [00:28:40] So I adjusted my diet and they got considerably better. Oh all right. But I am. I still have a problem walking.

Lita [00:28:49] OK.

Danell [00:28:51] We have a.. He has a shower chair/ stool now that helps him a lot in the shower, because his legs are still weak to a point.

Lita [00:29:01] Wobbly?

Danell [00:29:01] I think I think I {un-able to translate} at one point I brought it back so that I could have it.

Lita [00:29:07] OK.

Danell [00:29:07] . You know just because of you know after this surgery you're just you know you're tired. You have major surgery.

Lita [00:29:13] Sure sure. I, I know that they also make like almost like support bars that go in the toilet area that can help you get up and down do you need anything like that?.

Rod [00:29:25] Of course I do. I do not. I don't sit in the tub, it's too hard for me to get up.

Lita [00:29:29] OK. You just shower?.

Rod [00:29:30] Stand. So although I do sit on that stool she is talking about in the shower but I don't get down in the tub.

Lita [00:29:38] How about a handheld shower that you can be removed from.

Rod [00:29:41] No.

Lita [00:29:41] Have you ever tried one of those that you attach afterwards?

Danell [00:29:44] I actually have one.

Lita [00:29:45] . Do you. .

Danell [00:29:46] You know there again it's like, I'm not, you know incapacitated in any way but yeah I'll let you know as being a nurse and having worked in nursing homes for you know back years ago. Yeah. Things like that are awesome.

Lita [00:30:02] OK great. Great. Well I want to thank you both for all of that information. You probably wouldn't realize how much it means to people to hear the stories of people that have already gone through it. So let's say someone just gets diagnosed and they don't know what to expect. "God I had a kidney disease. What on earth am I up to next". And this way they can hear the podcast they can hear your stories and they can have a little bit of sense of relief say well these two they've gotten through it pretty well and I can certainly get through it and they gave me a couple of Hints and advice and I know what to look for. And it really is helpful so I really want to thank you and I appreciate you taking the time to do this with us today.

Rod [00:30:51] You're welcome.

Rod [00:30:51] We appreciate everything that you've done.

Lita [00:30:54] Oh well it's been an honor.

Rod [00:30:56] Well I've I felt bad that I lost your kidney as much for you as for me. You did. You made that sacrifice and I wasn't able to keep it.

Lita [00:31:06] what? It was not your fault.

Rod [00:31:08] Well this is true but I still felt bad about it.

Lita [00:31:10] Don't worry about it. It's okay. I am going to cut this off now.

Lita [00:31:15] If you have any questions or comments related to today's show you can contact us at podcast D X at Yahoo dot com through our Web site where you can link to our Facebook page and also see more information as we build our site. Please go to podcast D X dot com.

Ron [00:31:36] And for our listeners you have a moment please give us a five star review on item podcast.

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