I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: gothiclovemonkey on March 11, 2011, 07:59:34 PM
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I am coming to thoughts that I should just give up ,my only driving force is my son, who i love so much, and want the best for, how can me being sick all the time, in and out of hospitals, be any bit good for him? he deserves the best..
im so sick, and i cant keep anything down, my body shaking like crazy, im scared, and i dont know what to do. i went to the er, they didnt do anything, xrays, and blood work, but it all came back just fine, yet im not fine, what shuld i do?? should i give up already???? Im only 27, i feel like im dying, and it seems there is no end to this battle. im so scared, and nobody have answers...
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I just poped on here and saw this and it makes me so sad. No, your not ready to give up!! NOT! I am hoping that someone comes on with good words for you as i am at a loss for them . Your young, your son is very much in need of you. Someone HAS to find ot whats wrong!! It breaks my heart to know that your feeling so awful.. oh how i wish my mind would work and find words to sooth you. I can only say my prayers for some comfort for you at this time, and for blessings of health come your way so you can be here for your son. Hang in there sweetie, :grouphug; with you in the middle.
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Simple answer...no, you should not let yourself die.
If they don't even know what is wrong with you, the least you can do is find THAT answer before you make such a drastic decision. It's a final solution. If your labs come back fine, then what you are fighting is depression, and depression is never a good reason to die.
No one may have an answer right now, but that doesn't mean there isn't one.
It must be so very hard for you. :cuddle; Someone really does need to find a cure for this disease.
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i dont feel like im depressed, or at least, i wasnt until this week...
im so scared... i mean, yes i do battle with depression but im on an antidepressent... can depression make u throw up? make ur body shake?? I dont think that is what it is though, i eally dont...
but what can i do? my dr wont listen to me, and the er just checked my gullbladder and said that was fine so sent me home,
i dont want to give up, i want to get better, but i dont know that will happen at this point... im just so scared. how long will i live if i have no nurishment???
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Awww poor girl, you've so much to deal with, it's just not right. If you were my daughter I would call everyone, beat down some doors, until we got some help. Is there anyone in your family that can help you? Is your dad still helping? It sounds like you may be having an allergic reaction, or overdose or something is just giving you side effects. Even if your labs look ok they might not show something like that.
My dad died when I was 7, he was 28 years old. I still cry when I talk about him. I have little snippets of memories, I wish I had more. I was too young to understand death, I kept thinking he'd come back, I'd see him in my dreams. I only say this because even if you're sick, you're still very important to your son. Find a different doctor. You may have to be hospitalized so they can give you IV nutrients while they sort this out. You need to get help right away.
ASK THE DOCTOR about parathyroid tetany /tet·a·ny/ (-ne) a syndrome of sharp flexion of the wrist and ankle joints (carpopedal spasm), muscle twitching, cramps, and convulsions, sometimes with attacks of stridor; due to hyperexcitability of nerves and muscles caused by decreased extracellular ionized calcium in parathyroid hypofunction, vitamin D deficiency, or alkalosis, or following ingestion of alkaline salts. Surgical removal of the parathyroid tumors (parathyroidectomy) to treat hyperparathyroidism can infrequently result in acute dysfunction of the remaining parathyroid glands, causing acute hypoparathyroidism and sudden, severe hypocalcemia. The sudden, extreme hypocalcemia can cause life-threatening tetany and possibly airway obstruction. In these (infrequent) cases, immediate treatment with intravenous calcium and careful monitoring of heart function and airway status are required.
I am PMing you my phone number and I absolutely insist you call me!
:cuddle; :cuddle; :cuddle; :cuddle;
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GLM., I've been there...wanting to just fold and sink down into the despair of mud that I felt.I starved myself (79lbs at 5'8"), no escape! But, that given gift I have, that is life kept me fighting back. Don't know why, as I felt that I had nothing to live for. I have me, a good person, an addition to life, a person who matters. Get your head above the water and breath, just one breath. IT WILL GET BETTER!
:grouphug;
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Goth, oh Goth, do you really think your son will be better off with out you, could you honestly leave him on his own, he needs you. Life may be sh*t at the moment and I have no doubt that you feel really ill, you have got to keep hassling the doctors, get them to sort you out, it may be some medication you are taking, it could be depression, you must talk to some one. I will be praying for you, please don't think of doing any thing stupid. Look at your son and think I will sort this out for both our sakes.
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I want to echo what Karol said about questioning the parathyroidectomy in case it's responsible for the physical things you're experiencing. Can you also ask your doctor to refer you to the social worker or someone you can talk to about how you're feeling emotionally?
Quite often it takes a while to find the answers to the puzzle that we represent when we have this illness but please keep on pestering the medical people with questions.
I'm more than positive that your son does not want you to give up. Please call your doctor again or go back to the ER if that's the only option. :cuddle; :cuddle; :cuddle;
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Don't give up yet. Hang in there and MAKE them find out what is going wrong. You can do it. We'll help you. :grouphug;
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Sweetie, I lost my mom when I was 27, and that was still too young to be without her. Your son needs his mom. PERIOD.
:grouphug; :grouphug; :grouphug;
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Hey Goth, how old is your son? Mine is 13 now and he's been through quite a lot with his old mom (me). I know what you mean about our son's keeping us going. Tell me about your son. What is he into? What do you love most about him? What are the things you look forward to doing with him when you are feeling better (and I believe you will feel better!!!!).
I'm sorry that you are in this painfull and frightening place! I wish I could make it better. I hope that someone in your day-to-day will step up and carry you through whatever needs to be done or tested to figure out what is going on for you physically, and SOON!
Keep talking to us! One day at a time! :flower;
Diane
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HI GOTH! How old is your son? What do the two of you do together?
You must hang in there, it's not just you! Being sick is not a great way to spend the day, but you have to get to a different doctor and find out what's going on if you are that sick. Sometimes, doctors just don't care, and you have to find a different one! I about to change dr.'s because of that reason.
When I go iin for my "monthly" visit, he would just look at me, write things down in the chart, write me a script for meds if i needed them and leave. He NEVER, checked my lungs, my heart, asked how Dialysis was doing, NOTHING. I starting asking him "trick" questions, from visit to visit to see if he was paying attention or following up on things he said. Just last week, I asked him how my PTH level was on the blood work he sent me out for last month. Of course, I had a copy of it and he said it was within normal range. IDIOT - they didn't test my PTH, they tested my TESTOSTERONE level. Of course he never mentioned the TESTOSTERONE level. Why did I give his fool my hard earned money for the Co-pay! FIND A REAL DOCTOR WHO CARES.
KEEP FIGHTING SWEETIE, we are all with you!
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I realized that I may have sounded suicidal, which i want to say im not. What i think i meant was that I keep telling the dr, he just says hang in there, do i just deal with this or do i fight the dr??
My son is my driving force I love him so very much. I lost my mother when i was young, i was 13, and she was sick all of my life, I know she tried so hard, and loved me so much, and I now feel like I understand her more because of what im going thru, it saddens me, but I really dont want my son to have to deal with all this.
He is the sweetest boy, and hes awesome, just awesome. I am very blessed. He has had a rough life, with his own medical issues, plus mine, and unfortunately his father isnt in his life regularly... poor kid. And we have an appointment coming up because he had some testing done, and they said it was abnormal... another hurdlle for the poor lil guy.
I feel terrible that I cant play with him as much as id like, but We read, draw, do arts and crafts, and have "tickle fights" and cuddle time, we watch movies, i do try to do as much as i can, but hes a boy, he wants to play ball, and stuff like that, things i dont have engery for right now, and i hate myself for that.
He seems to be very understanding of everything, but i hate being a burden, and i hate that he has to go thru this...
My doctor has sooo many patients i think thats what the problem is..
Thank u all for being here for me, I really appriciate it, you all give me strength
THank you
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My father and step mother have been really supportive and helpful right now, i am very blessed. They dont really know what to do either, and me and my dad both are a bit submissive lol
Im going to mention that tetany to the doctor, hopefully he will listen
My son is such a sweetheart, he came up gave me kisses and said "Im sorry u dont feel good mommy" I said thank u sweetie ur kisses make me feel so much better! I love you bunches!
Im so blessed just wish I felt better and had the courage and strength to bitchslap my doctor...err i mean lol figure out whats wrong.
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Good to hear from you 'got'..hehe (btw,,, what does your name mean?? well, if ya dont mind telling that is ;) ) Children are so precious arent they.. Im glad your there for yours and hope OH SO MUCH that something good will come to you in the way of figuring out your health issue. Hope you have a good eve, and wake up feelig even a bit better, and stronger so that by monday, you can go give your dr'S some of that...ah hem,,, you know! that they need to get ya goen... bless ya
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:cuddle; Glad you have your son to brighten your days. Being ill, and not knowing why, drags you down so much that it's hard to find bright moments in your day. I can only reinforce what everyone much wiser than me has already said - keep pushing for an answer. I know it's hard, especially when tests are coming back 'ok' but you know your body best, and things are NOT okay. Hang in there.
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Gothiclovemonkey is gothic love monkey lol no idea why i picked it... im a strange one, had it since early highschool, i was a bit of a freak, and i love monkeys...
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thats so funny gothic... i always call you got the glove monkey...lol not that thats what it spells out but thats what i say. Now i see you spell it out, i 'think' i figured that out already once before but just forgot and went and called ya what i wanted..lol Please get well youngen!! your needed here :-)
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lol got the glove lol
my old name and nick name is squrl (squirrel) because im a bit nutty lol my dog named me squirrel :)
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Hehehe! :rofl;
I saw it as Gothic Clove Monkey - now I see what it is! I wondered about the clove LOL
:waving;
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Hey buddy I'm 27 too and been on dialysis for 4 yrs ...I know how u feel...always remember it could b worse and ain't no point cryin over spilt milk...its done,nothing we can do to change it...only work on the things we can change for the better...y waste energy on things we have no power over???hope to hear from u...I'm new to the chat and could use a fellow young person to chat with :cheer:
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im so sick, and i cant keep anything down, my body shaking like crazy, im scared, and i dont know what to do. i went to the er, they didnt do anything, xrays, and blood work, but it all came back just fine, yet im not fine, what shuld i do??
There's your answer.
Your current set of doctors and nurses aren't helping you. We don't know if you can't be helped. All we know is that the doctors and nurses who are caring for you right now aren't doing the job.
But there are always others.
As Dr. Bernie Siegel wrote in his book "Love, Medicine, and Miracles":
"You have a right to sixteen doctors' opinions."
When all seems lost with the treatment you're getting, why don't you pick one of the top 5 hospitals in the United States. (On the East Coast, that would be Johns Hopkins or maybe Massachusetts General.) Travel there, and get a second ( or third or fourth) opinion from them. At your own expense if your insurance won't cover it.
At least then you'll know you tried all possible options.
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What you're experiencing sounds much like what I was experiencing when I had a line infection a while ago. I was in ER, then admitted for 6 days in isolation. The nephs didn't know what was wrong, the Infectious Diseases docs didn't know what was wrong. It was horrible but it passed and I had to beg to go home. They did NOTHING but take blood whilst in hospital.
The thing that keeps me going after 14 yrs on D are my pets. I have to be there for them. If I'm not, what happens? Hubby won't want to take care of them. He doesn't especially care for cats, my dog would be too much trouble, and the horse...forgetaboutit! They'd all be sent to a shelter and killed. I LIVE for those pets.
Now, if I had a son (which I always wanted but couldn't have) I can't imagine wanting to die.
I hope you're feeling better and looking forward to seeing your son's life flourish. You don't know what the future holds but they're growing WORKING organs now. I'm pretty optimistic!
Please take care of yourself.
Lisa
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Never give up!! My mom has had kidney disease for over 30years, starting when I was five. The first ten years were rough for her, on and off dialysis, and 3 kidney transplants. The third transplant gave her her life back for about 12 years, and she even went back to work as a physiotherapist. I don't think in those first few years, she would have ever dreamed that she would see her grandkids. Don't give up the fight. :boxing; I'll be praying that your doctors will have wisdom and figure this out. :flower;
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Hey Goth , how are you doing ? Are the dark days seeming a little less dark ?
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my son gives me the strength to survive,
i have stopped throwing up, thank God! I still have the rest of the symptoms, and all the dr has said is my thyroid levels are high...
And to add, a new symptom, very itchy moles... its a pain because u cant scratch lifted moles without causing them to bleed, of course, not that my skin doesnt bleed when scratching on it anyway.
My little boy, the poor thing, he just doesnt understand yet, it makes me feel terrible... but he does try, and so do i, and i think thats what counts?
i find out this wednesday whats wrong with him, im so nervous. i hope whatever it is, isnt too bad, hes a good kid, no kid deserves an illness...
also, he has to have surgery on his eyes, to correct the muscles, hes not excited about that (to say the least) THe dr asked him if he knew what surgery is, he looked at me, pointed at my arm, fistula, and said i dont want surgery, mommy gets sick when she has surgery. :(
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I'm sorry, glm...I missed this part of the story. What's going on with your son? What's wrong?
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I dont really know much, He had some genetic testing? and they called me last sat (2 weeks ago!) and said that it came back Abnormal. They said they didnt have the info right in front of them, but scheduled me to be there wed morning, without Jareth(my son) to discuss it. Why they had to call me and leave me hanging like this, i do not know, she could tell i was upset, and said Try not to worry too much, it could be something rare... I am thinking now HOW is THAT supposed to make me feel better????
As for the eyes, we have been putting it off for a while, the dr said he doesnt "need" it but recommends it, as of right now my son would not be able to drive when hes older, because he has no depth perception, no pariphreal vision, his little right eye doesnt seem to want to work...
most beautiful blue eyes ever though! and his eyelashes... wow.
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There are few things more painful than being told that your child is not perfect. To keep you hanging like that seems so very cruel. I really hope everything will be OK.
You don't have to be a perfect mommy. He will love you whether or not you are on dialysis. He will somehow understand all that you are doing to stay with him. There is no greater love than choosing to endure dialysis just so that you can be there for your baby. :cuddle;
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id do anything for him :) hes an amazing, strong, wonderful little boy. Even when he is being a turkey, sometimes hehe
hes been through so much already, i just hope whatever it is, isnt too scary.
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Dear GLM I'm coming to this one a bit late it seems. It breaks my heart to read your struggles - on top of all the usual stuff with D and kidney failure - and how difficult it is. One thing I want to say in regards to you wanting to give up (your first post) is think about how you felt growing up with a sick parent and then consider that your son, even though he may still not be old enough to fully understand, might also feel given your own experiences. It seems he understands enough to know you are not able to do everything you both want together and he accomidates you as best he can - which is so sweet and wonderful. Cherish those times together. Fight for them....
... and like RightSide said - GET MORE OPINIONS! You say your doc doesn't listen to you well find someone that will. It seems these latest problems are linked to the parathyroidectomy - how can thye not listen to you and test you or investigate more while you have these horrid symptoms???? I would ask the neph if they have no idea what is causing this can they refer you to someone who might??
You have to fight for this it seems - as with everything else - but you CAN get through this with the right sort of help - I am convinced!!!!
We all want you to be there for and with your son for years to come, okay?
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Jareth ..what an unusual name. :cuddle; to you both.
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I am fighting hard for my little man, i just had a moment of feeling so lost, I am giving the dr until tues to contact me about the thyroid issue, if he doesnt, i am going to seek out more options, altho last time that did not seem to go as planned...
Jareth, yes a very odd name, and people get it wrong alot lol its crazy. Its kind of interesting how I came about it... I had him super early, he didnt have a name yet! So i kept opening the baby book and pointing, after a week of debating names i liked. I came across Gerath, I thought, thats kind of cute, but I would have to go with J... then I said Oh no I dont want Jerry as a nick name, so I switch the e and a, Jareth.... hmm.. sounds familiar? i like it. I go home and watch one of my fav movies, the Labrynth, with the sexy David Bowie... OH duh! Thats HIS name....
I suppose he should be thankful i didnt go with Angel Raynebo which was a thought, ha!
I love my little man, hes so special. I just want more for him... thats what makes this so hard.
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Hey you could have called him ZIGGY "!!!
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hehe i totally should!
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No, you should NOT allow yourself to die!!!! The other thing you need to do is change your total mind set on the entire dialysis thing. Stop looking at life through your disease and start living it for your son's sake! Having renal failure isn't the end, it is a life change, but you can live a long time on it!
If you keep telling yourself that you are ill then you will be. If you get a more positive attitude about the entire thing then it plays a huge part in how you feel. I have only been on D for 2.5 years but my Nephrologist tells me that I am doing remarkably well. Why? Because there is nothing wrong with me! lol
Dialysis is a "small" part of my life because I refuse to allow it to define who I am or change how I live my life. Sure, I can't do things I used to but I find other things that I love to do.
id do anything for him :) hes an amazing, strong, wonderful little boy. Even when he is being a turkey, sometimes hehe
hes been through so much already, i just hope whatever it is, isnt too scary.
If you'd do anything for him then the one thing he wants most is his MOM! Don't even think or talk about dieing anymore. ;)
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Dialysis is a "small" part of my life because I refuse to allow it to define who I am or change how I live my life. Sure, I can't do things I used to but I find other things that I love to do.
I agree completely..... learn to live in the positive, hang out with positive people and activities.... Don't let dialysis bring you down....be strong..... set a good example to your family on how to be strong.... and come here to vent..... we all understand...
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I think some people are misunderstanding me eheh i think i need a better way to word stuff but anyway
I am very positive person, i dont let this get me down, USUALLY, but here recently it just seems i keep getting sicker, and i dont think it has anything to do with kidney failure, and my doctor hasnt helped at all. I dont want to die, and i dont want to give up either, but when u continually tell ur dr something isnt right and he just shrugs it off and offers u pain pills, its a bit frustrating.
when I wrote this I felt like i could die, i still feel like crap, but "functioning crap?" lol Im scared that if my doctor doesnt pull his head out of his ass, i could die, but i have officially given up on that idiot, and im takin yalls advice and seeking someone else. I gave him until today to do something, after consistantly asking for his help, and he has done nothing.
Oh how i wish my original doc hadnt retired, he literally was the best! Old school, and completely honest, straight forward, and actually cared... i miss him!
Thank u all, I AM living for my son, I do everything for him, infact im even makng plans to take him tons of places this summer, hoping by then to have answers/cures/ at least feel well enough to be ok....
I really dont think its got a thing to do with my kidney failure, i think it is something entirely different, but what i do not know... they now say my thyroid is funky, but have not done anything about it, which i found odd, and mentioned it 3 times now to my doc, and still nothing...
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If your gut feeling is that this has nothing to do with your kidney failure, you just may well be right. It is very tempting to blame every little thing on kidney failure, and that's not really smart. Seeing another doctor at least for a second opinion is within your rights, so good for you!!!
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... they now say my thyroid is funky, but have not done anything about it, which i found odd, and mentioned it 3 times now to my doc, and still nothing...
Blokey has a funky thyroid (I love that expression and will now use it to death, thank you!); when he originally began getting ill they decided that was what was wrong with him. If they really think there's a problem with your thyroid (underactive?) then they need to get their fingers out of their butts and do something about it. I'm not an expert (obviously!) but some of your symptoms could be consistent with a funky thyroid. Mention it again.
How is Jareth?
*huggles* for both of you.
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hehe i have a few funky parts ha
Jareth is good, spoiled rotten of course. We had the drs appt, saying his test results are abnormal, but they dont think whatever it is, is causing the problem, so thats good? i think? they said usually the part thats abnormal makes the body have the heart on the opposite side, so we are checking to be sure, but im pretty sure they would have caught that when he was born....
We had a great day monday, i took him to a costume/magic/stuff lol store and we had a blast looking around, and i got him a cowboy hat and gun with holster :) my lil cowbaby
Theyre pretty sure he has ADHD
Hes scheduled for his eye surgery on april 21.
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I also love Labyrinth and am a Bowie fan. That movie is wonderful.
Great to hear good news (I think it was better than expected) about Jareth. Every little boy needs a cowboy hat!!!