to let myself die?

[gothiclovemonkey]

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.

[MooseMom]

I'm sorry, glm...I missed this part of the story.  What's going on with your son?  What's wrong?

[gothiclovemonkey]

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.

[MooseMom]

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.

[gothiclovemonkey]

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.

[RichardMEL]

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?

[KICKSTART]

Jareth ..what an unusual name.  to you both.

[gothiclovemonkey]

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.

[KICKSTART]

Hey you could have called him ZIGGY "!!!

[gothiclovemonkey]

hehe i totally should!

[*kana*]

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. 

[tyefly]

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...

[gothiclovemonkey]

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...

[MooseMom]

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!!!

[Poppylicious]

... 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.

[gothiclovemonkey]

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.

[chook]

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!!!