please help me im scared

[kitkatz]

Please watch the personal attacks.  I have given warning to a few members about this before.  I have also been contacted about swearing in posts. This has been addressed through PMs.
Please read our rules once again.
Play nicely on this forum.
If anyone is confused about the rules please feel free to contact me.


Thank you all for your support of other members.


kitkatz-Admin

[gothiclovemonkey]

it has been a tough year,but honestly, things are starting to look up... i wish my doctors would take me seriously, otherwise life is actually sooo much better these days. Not to speak ill of my ex, but he wasnt exactly a helpful person, i felt like i was raising two boys. its nice to have money for a change, since mine was the only income for out entire marriage. when he left, he told me the entire relationship was faked, he never loved me. it was out of left field, i had no idea. I asked him why he seemed off that night, and he said some very hurtful things, including he has never been attracted to me, due to my medical stuff. (I would have rather heard him say, due to my size, because thats soething i can actually fix.)
SO, for the week that was happening, i did have a small breakdown. but most people didnt even notice, it was that small. Anyway, yes at that time, i probably shouldnt have started training, but to completely say no... thats what bothered me. Plus, im sure having that on my record will go against any hope i may have for being listen in the future....

 as far as being active... I have rhuematoid arthritis that they arent treating at the moment (due to other health issues, its 'too dangerous') so i have these giant lumps forming all over my hands and feet. very painful. Thats why I only do the water classes at this time, instead of some land classes too. I can handle the treadmill. It would be better if I could afford the special shoes they want me to buy, but insurance doesnt cover them, and they are $597.00 lol
i have that "move it or lose it" attitude right now. I know that without treatment this RA business will only get worse, so I am doing what I can while I can!
UNfortunately, winter is really rough, i usually end up with a walker... hoping for a mild winter!!!!

[Michael Murphy]

It's good you seem to be doing better,  please remember that people who judge other people with out  being in there shoes should be ignored.  That being said ESRD is not for the faint of heart and try to give yourself some slack,  your ex was and is a moron don't let his bile bring you down. Living well is the best revenge.  Since I have been reading your posts you seem to be doing better.  But still remember to treat yourself well.  A walker is not the end of the world use it if you need it a broken nose would be worse. Finally it's a El Niño year and weather geeks are calling for a mild winter north of the mason Dixon line and snowy down south.

[cassandra]

Keep up the 'good' work honey. I'm sorry your suffering with your RA again, but like you say, keep moving.

Sending you lots of positive, and healing vibes, love, luck and hugs, Cas

[gothiclovemonkey]

thank you guys
All we can do is keep moving, keep trying.


 i really do love that water class. Its called Gentle Joints, geared to folks with arthritis and pain and such, so it really works the joints, but... gently. (water walking, while doing hand exercises, water weights) the second class is a higher intesity workout, gears to get your heart rate up. (water running, 'jumping rope', jumping jacks, its awesome and i really enjoy it, even on my bad days, while im in the water, if feels ... oook until i get out. and i love swimming. they have multiple times during the day one can go just to do laps. or water exercises. i take advantage of that when i can. I hate missing classes, I only miss if I have drs appointments. (this monday i have 2 in a town about an hour away, so ill miss  darn drs  )
and i really really want to get a treadmill for my house, that way, i can walk on it without shoes! shoes kill my feet lumps. and the YMCA doesnt allow you to be shoeless..

I also just started going to a group, that specializes in helping folks cope with things better. Its called DBT - dialectical behavior modification. I tend to hold it all in, then explode over something piddly. and ive been known, in the past to do some very stupid things when i finally do explode. (part of the reason it drives me nuts when people say that im not "psychologically sound" because at one time -most of my teen and young adult life, i wasnt psychologically sound and had a horrible addiction to self injury since i was 11... and Ive worked very hard to get better. without medication!!!  -- nothing seems to work on me. if anything, it did the opposite and made me worse...Ive had one relapse in 8 years. and dont intend on having another, ever! ) so im pretty excited to be doing this. ive been wanting to for about a year now, but it was always during dialysis.

It really sucks when people can only remember how you were in the past. Ill always have a crazy label. it can be difficult when you put so much work in to bettering yourself and you dont really have any one to back you up, or encourage you... So I really do appreciate you all so much!

[Michael Murphy]

They make moldable shoe inserts for a fraction of the cost of custom orthotics.  I looked online for heat moldable shoe inserts and found a bunch under 30 dollars.

[gothiclovemonkey]

very nice!! THANK YOU!

[drawingdami]

Absolutely UNACCEPTABLE.

Write a complaint letter and give it to your coordinator, with a cc to the headquarters of the Company that runs that center,and your state Board of Health. You should absolutely not be treated that way. Even if it WAS a panic attack, that can kill you! That should be taken VERY SERIOUSLY. I know an hour round trip to another center is terrible, but you really should look into it. Also, check and see if any other centers have opened up nearer to you recently. Centers are opening up all the time--they are profitable! If not, maybe really seriously consider Home Hemo. I do it with a NxStage machine, and although its a lot of paperwork and medical equipment, it is not hard at all, once you get the hang of it. Since its more frequent dialysis (6 days instead of 3) it might help alot with the swelling and the nausea.

But send those letters! People shape up REAL QUICK when they realize you ain't playin'!

[PrimeTimer]

thank you guys
All we can do is keep moving, keep trying.


 i really do love that water class. Its called Gentle Joints, geared to folks with arthritis and pain and such, so it really works the joints, but... gently. (water walking, while doing hand exercises, water weights) the second class is a higher intesity workout, gears to get your heart rate up. (water running, 'jumping rope', jumping jacks, its awesome and i really enjoy it, even on my bad days, while im in the water, if feels ... oook until i get out. and i love swimming. they have multiple times during the day one can go just to do laps. or water exercises. i take advantage of that when i can. I hate missing classes, I only miss if I have drs appointments. (this monday i have 2 in a town about an hour away, so ill miss  darn drs  )
and i really really want to get a treadmill for my house, that way, i can walk on it without shoes! shoes kill my feet lumps. and the YMCA doesnt allow you to be shoeless..

I also just started going to a group, that specializes in helping folks cope with things better. Its called DBT - dialectical behavior modification. I tend to hold it all in, then explode over something piddly. and ive been known, in the past to do some very stupid things when i finally do explode. (part of the reason it drives me nuts when people say that im not "psychologically sound" because at one time -most of my teen and young adult life, i wasnt psychologically sound and had a horrible addiction to self injury since i was 11... and Ive worked very hard to get better. without medication!!!  -- nothing seems to work on me. if anything, it did the opposite and made me worse...Ive had one relapse in 8 years. and dont intend on having another, ever! ) so im pretty excited to be doing this. ive been wanting to for about a year now, but it was always during dialysis.

It really sucks when people can only remember how you were in the past. Ill always have a crazy label. it can be difficult when you put so much work in to bettering yourself and you dont really have any one to back you up, or encourage you... So I really do appreciate you all so much!

I have Fibromyalgia and Depression. How are you feeling with your water classes? Has it helped your pain, your mood, energy level or outlook on things or has it helped all these things or just one? What specifically do you like about it the most? Am curious because I sometimes think of joining a swim class too. Keep up the good work! 

[Charlie B53]

I must apologize for not keeping current with your thread.  I haven't for months and now see that I have missed an awful lot.  Thus, I am Sorry.

He was a turd.  Plain and simple.  Initially he did think far better of you, but then He more or less wore out.  And rather than admit his problems and deficiencies, he attempts to blame you.  You haven't changed.  You haven't hid anything.  You've been upfront and open with him throughtout.  He is afraid that he would seem weak so instead he goes on his rampage and starts laying all blame on you.

It hurts, alot. but once you understand how truely immature he is, and why he tries to lay it all on you, then you begin to understand how it is NOT your fault.

So much for that.

Your RA.   I worked with an Old Man, Heavy Equipment shop.  He kept a jar of UN-heated honey next to the coffee pot.  Every morning he would put a tablespoon of honey in his coffee.  2 cups every morning, never fails.  Told me about his RA.  How he couldn't work, couldn't even wipe his butt, is would get so bad. 

I don't remember how he found out about it.  The only thing I do remember is it had to be UN-heated.  Spun out of the comb.  Heating kills all the natural enzymes.

Even if you are diabetic you can figure out how to substitute the honey in for something else.

Give it a couple of weeks. 

I hope it makes as much improvement for you as it does for him.

Take Care,

Charlie B53

[Charlie B53]

Another treatment proven effective yet BANNED by the FDA.  Cocaine.

I don't remember the medical facility or when.  But... Double blind studies were done with twins with debilitating RA. Each were given identical appearing 'capsules'.  One obviously a placebo, the other very small doses of cocaine.  And by small it was so small is to have no noticeable effect as in  getting high.

Over the period of the study the swelling and pain of those receiving the drug vastly improved, not just a reduction in swelling and pain but improved range of motion and function.

The study continued and reversed the groups,, those that WERE receiving now didn't and those that didn't now did.

Over the next period of time the symptoms switched.  Returning to those that had remission now again suffered and those previously untreated now went into remission.

The FDA REFUSED to agree and allow the drug to continue to be used.  Would NOT allow Dr's to prescribe.  Claiming the possibility for abuse too great they refuse to reschedule cocaine in in way to allow treatment.

Simply rude, knowing there is a drug that can be used responsibly to allow so many people relief and quite possibly the ability to return to the working world, yet the FDA continues to refuse.

[gothiclovemonkey]

I cant do home hemo, the dr put it in my file that i am "not psychologically sound" enough to do home hemo (he of course did that the day my husband left me...)

The water classes were helping very much, i cant wait to go back! ive had one thing after another lately preventing me from making it to class, but I am hoping to return this week! It really did help me feel a lot better!!! I would have to say the water itself, i feel better when im in the water, the weight is lifted so the pain is less. also its usually really warm, which feels great and i actually am a weirdo, considering im obese i actually love working out. always have. i feel better mentally too

i just wish my doc believed me. hes now accused me of being bulemic because i throw up an awful lot, not on purpose mind you, and ive asked him to help me figure out why...  (um.. i am fat, dude, no.. and if i were, would i be asking for help?! ) and an alcoholic because my brain scan showed atrophy (i dont drink, i can seriously count the times ive drank on my hands)  He can be such a jerk.

Im really just in a bad place with all this right now... too much going on medically. waaay to much
if i didnt have my boy to think about, id stop this stuff. he keeps me going.

[PrimeTimer]

Ha...I know what it's like when people think they know everything about you and they don't even know or want to understand the truth. I've yet to figure out how to deal with these types. Hang in there. Hope you can get back to enjoying the water again soon. Of course you have to put your son first but be kind to yourself so that you have the strength to be there for him. 

[PatDowns]

Definition (psychological terms) - Enabler


1. Tacit Enabler - Supports another's bad habits by staying silent.

2. Overt Enabler - Supports another's bad habits by providing assistance such as money, transportation, approval, etc...

A person who supports another person's bad or dangerous habits.

Enablers tend to fear calling others on their destructive habits because these "others" tend to be friends, family or others close to the enabler.

Thus, rather than risk losing the love, respect, friendship or contact with the person, the enabler chooses instead to play it safe and watch the other slowly destroy themselves or others through their own actions.


Enabler (psychology) - one who enables another to persist in self-destructive behavior (as substance abuse) by providing excuses or by making it possible to avoid the consequences of such behavior.

[drawingdami]

Definition (psychological terms) - Enabler


1. Tacit Enabler - Supports another's bad habits by staying silent.

2. Overt Enabler - Supports another's bad habits by providing assistance such as money, transportation, approval, etc...

A person who supports another person's bad or dangerous habits.

Enablers tend to fear calling others on their destructive habits because these "others" tend to be friends, family or others close to the enabler.

Thus, rather than risk losing the love, respect, friendship or contact with the person, the enabler chooses instead to play it safe and watch the other slowly destroy themselves or others through their own actions.


Enabler (psychology) - one who enables another to persist in self-destructive behavior (as substance abuse) by providing excuses or by making it possible to avoid the consequences of such behavior.

I am sorry PatDowns,...Who are the enablers? Are you saying it's us? Gothiclovemonkey? The waterclasses???

I might be dense, but I am still very confused as to what you mean.

[drawingdami]

Gothic--may I call you Gothic?

I think that Dr. has some sort of agenda regarding you. I don't like how any of this sounds. He sounds like a real jerk and now it sounds like it is putting you in jeopardy. Please send those letters. The ones going to the people at the clinic and the managing company are really just for formal notice. It's the one to your local Health Department that really matters. And if they don't respond, write a complaint to the governing state medical board that issued your Dr.s' licence. Just keep writing until somebody listens. Some may think this is overkill, or too much drama, but I'm telling you from experience, it works! Even if it just puts people on notice that they can't just keep ignoring your issues. Even that can help a great deal.

Take names and kick butts!

[Charlie B53]

drawingdami spelled it out.  Document, Document, document.  Names, dates, places, etc..

IN WRITING, to the governing boards and Licensing agencies.

When a serious problem is brought to the attention to those at the top, it soon becomes a landslide buy the time it gets near the bottom.

The local Dr and clinic should have listened and handle it professionally instead of ignoring you.

They have jeapardized YOUR health and safety.  Which by law is their responsibility to take care of.

Warm up that pen and get busy.  Keep copies of every letter you write.  Especially those to the locals as they will claim you never told them anything in attempt to cover up for their negligence.

Take Care,

Charlie B53

[PatDowns]

I am sorry PatDowns,...Who are the enablers? Are you saying it's us?

Yes! 

GLM has been on IHD for years now and dialysis even longer.  Go back and read the posts she starts.  This is nothing new.  The medical world is against her, yet, GLM has NEVER followed up on the excellent advice from many on here who have been supportive and tried to help - both on the forum boards and in PMs.  She's ALWAYS coming up with a "yes, but" reasons why  the suggestions not apply to her.  Example:  GLM has been on hemo for over 5 years now.  I'm sure this isn't the first time her machine has acted up on her and needed to be moved to another one.  She knows that low dialysate temperature makes her knees ache.  So, why couldn't she have said to the techs, "please be sure the temp on the other machine is set to at least 36.8 because my body reacts poorly to low temp.  Thanks!"   NO, she waits and says nothing until experiencing the pain. 

I have no reservations that GLM is in a lousy center, yet on only one occasion can I remember her ever standing up for her rights.  And the results?  In less than a few months she's back in this same victim pattern.   Yet, how much of this shit is due to her own making?  I'm sorry, but given all I've read from her, if I was a medical professional from her current clinic, home hemo would be the last modality I would prescribe for GLM.  She couldn't handle the responsibility.  Besides, again, from what I have read, she really wouldn't do it unless a professional aide was assigned to help.  Conveniently, her ex left just as they were supposed to begin training.   But she knew all along he never was trustworthy enough, he was almost as childish as her 10 y.o. in accepting responsibility.

At the minimum. she needs to be in therapy (it's not for this only, bad family problems and personal relationships as well).  And then, along with her therapist's support, find another dialysis center while no longer sabotaging good life choices.  However, I don't feel so optimistic for her.  No, GLM  embraces the drama queen role and unfortunately, is her own worst enemy.   

So yes, all you newbies who have responded to her by saying how awful she's being treated, are enablers.  If you will notice,  no long term IHDers - active on the boards for more than a couple of years - have posted to this latest addendum to her thread.

   

[gothiclovemonkey]

I am sorry PatDowns,...Who are the enablers? Are you saying it's us?

Yes! 

GLM has been on IHD for years now and dialysis even longer.  Go back and read the posts she starts.  This is nothing new.  The medical world is against her, yet, GLM has NEVER followed up on the excellent advice from many on here who have been supportive and tried to help - both on the forum boards and in PMs.  She's ALWAYS coming up with a "yes, but" reasons why  the suggestions not apply to her.  Example:  GLM has been on hemo for over 5 years now.  I'm sure this isn't the first time her machine has acted up on her and needed to be moved to another one.  She knows that low dialysate temperature makes her knees ache.  So, why couldn't she have said to the techs, "please be sure the temp on the other machine is set to at least 36.8 because my body reacts poorly to low temp.  Thanks!"   NO, she waits and says nothing until experiencing the pain. 

I have no reservations that GLM is in a lousy center, yet on only one occasion can I remember her ever standing up for her rights.  And the results?  In less than a few months she's back in this same victim pattern.   Yet, how much of this shit is due to her own making?  I'm sorry, but given all I've read from her, if I was a medical professional from her current clinic, home hemo would be the last modality I would prescribe for GLM.  She couldn't handle the responsibility.  Besides, again, from what I have read, she really wouldn't do it unless a professional aide was assigned to help.  Conveniently, her ex left just as they were supposed to begin training.   But she knew all along he never was trustworthy enough, he was almost as childish as her 10 y.o. in accepting responsibility.

At the minimum. she needs to be in therapy (it's not for this only, bad family problems and personal relationships as well).  And then, along with her therapist's support, find another dialysis center while no longer sabotaging good life choices.  However, I don't feel so optimistic for her.  No, GLM  embraces the drama queen role and unfortunately, is her own worst enemy.   

So yes, all you newbies who have responded to her by saying how awful she's being treated, are enablers.  If you will notice,  no long term IHDers - active on the boards for more than a couple of years - have posted to this latest addendum to her thread.

 

Um, how do you know that I havent taken anyone's advice?? 
I am in therapy. and im in a class specifically to work on my 'interpeersonal relationships' because, yes i suck at that sort of thing.

And actually this IS the first time they have ever manually put my blood back in me, in the almost 9 years ive been on D. Also, I was asleep, and USUALLY do ask that they check the temp. SO it has never been an issue before.
Of course i have had other machine issues, but not this specifically.

I am very aware that my ex husband was a childish idiot, and I would have done home hemo just fine without him, thing is, someone has to physically be here for the "just in case" bs... No one makes me go to the center, I go on my own tyvm. It would be no different if i had to do it myself. I did PD by myself no issues. (went really well to, I might add, but my body doesnt like the plastic tubing, unfortunately!)

And I wont lie, I am a bit of a pushover and confrontation scares the crap out of me, so I do tend to let a lot of crap happen before I finally say something, but I kid you not, when I wrote those letters to the clinic manager and my doctor, the clinic mgr called my therapist and told them I was suicidal (which I was not, and I am not sure why they would take it that way. I said I need help, I cant keep living like this, I am asking for you all to take me seriously here, listen to my concerns help me come up with a plan, and help me to help myself! that to me is not saying im going to commit suicide, but that I want to live and live well as possible.... maybe I am wrong there, but i dont think i am?!)

I really dont even give a crap anymore... my god, ive got more crap going on health wise than i even ever post about... im waiting on test results for lymphoma because the first one came back abnormal, my brain scan (i had to beg for, because the damn drs keep telling me all these odd symptoms are from dialysis) also came back wonky, so now i have to see a neuro to find out why. they still arent treating me for the RA because i have to wait for the results of the lymphoma crap.. plus other random stuff, so honestly, this is almost pointless to me. my body is falling apart, I dont really have a "support network" except my father who is aweosme but married to a psycho and lives in another town. And yea i have mental problems too, but at least i try...

think what you will of me.

[gothiclovemonkey]

Id also like to add that I did not know that the temp on my machine would cause my RA to flare....

And I dont really see why anyone would call me a drama queen? I actively try to avoid drama. I dont even leave my damn house unless its for drs or medical crap... I dont have any "friends" that I see on a regular basis, and I dont get mouthy with people even when they probably deserve it. The reason I posted about things here is because its all I HAD. my therapist of 10 years died last year, and ive had 2 fill in therapists since, they finally got me a permenant one I just started seeing. I dont have the kind of friends I can talk to when I need a shoulder, either. SO I came here, thinking, ahhh these folks at least know what its like, but I guess I was wrong.

Sorry If ive bothered anyone, or caused anyone else to feel as PatDowns feels about me. (as they stated "If you will notice,  no long term IHDers - active on the boards for more than a couple of years - have posted to this latest addendum to her thread.")

Thank you all for the kind words and advice.

[PatDowns]

I am very aware that my ex husband was a childish idiot, and I would have done home hemo just fine without him, thing is, someone has to physically be here for the "just in case" bs... No one makes me go to the center, I go on my own tyvm.

Do you self cannulate?  Because you're statement above is total BS, if you're not at the least capable of doing this.  Besides, these panic attacks have been going on for years when something goes wrong with the machine while incenter.   Maybe one day you'll develop positive coping skills to do home hemo.  But right now, you haven't shown any reason why you could handle the responsibility.

[cassandra]

Dear Gothiclovemonkey just because one person says horrible things about you (and us) doesn't mean that everyone does, nor that it's true. On this page alone you have quite some long - termers giving you positive feedback, so don't get yourself worked up about PD's rather insensitive post.
However, do write those letters.

Love, luck and strength, Cas

[PatDowns]

Dear Gothiclovemonkey just because one person says horrible things about you (and us) doesn't mean that everyone does, nor that it's true. On this page alone you have quite some long - termers giving you positive feedback, so don't get yourself worked up about PD's rather insensitive post.
However, do write those letters.

Love, luck and strength, Cas

Cas - I have no problem with you or anyone else calling my remarks insensitive.  I'll stand by them.  Unfortunately, sometimes the truth isn't so pretty.

Keep passing the open windows. - PatDowns

[gothiclovemonkey]

I am very aware that my ex husband was a childish idiot, and I would have done home hemo just fine without him, thing is, someone has to physically be here for the "just in case" bs... No one makes me go to the center, I go on my own tyvm.

Do you self cannulate?  Because you're statement above is total BS, if you're not at the least capable of doing this.  Besides, these panic attacks have been going on for years when something goes wrong with the machine while incenter.   Maybe one day you'll develop positive coping skills to do home hemo.  But right now, you haven't shown any reason why you could handle the responsibility.

I would self cannulate if they would allow me to at this clinic, but they dont. Im not afraid of needles. I am afraid of idiots who dont know how to cannulate. I gave myself my allergy shots when I was 9 yea i know its different, but im fairly sure I could do it with a lil training...
So, yes, your right, total BS on my part, because Ive never been taught how to do it, That being said IF I had the training I could do absolutely ANYTHING (especially without him.)

Dont pretend to know me just from reading some posts on here... Half of the time I am posting because I am scared, or upset... so you're only seeing that part of me. I am more than that. So instead of judging me, maybe realize we are all here for the same damn thing. helping others, and supporting each other!

[PatDowns]

I would self cannulate if they would allow me to at this clinic, but they dont. Im not afraid of needles. I am afraid of idiots who dont know how to cannulate. I gave myself my allergy shots when I was 9 yea i know its different, but im fairly sure I could do it with a lil training...
So, yes, your right, total BS on my part, because Ive never been taught how to do it, That being said IF I had the training I could do absolutely ANYTHING (especially without him.)

Dont pretend to know me just from reading some posts on here... Half of the time I am posting because I am scared, or upset... so you're only seeing that part of me. I am more than that. So instead of judging me, maybe realize we are all here for the same damn thing. helping others, and supporting each other!

Ah. another "yes,but" response.  It is your right for the clinic to teach you how to self cannulate.  If you are truly serious about wanting to learn how, then write a letter to the clinic administrator and forward a copy to your ESRD Network.  Putting in your needles would be a fantastic confidence builder.  One less reason, a major one at that, to have to rely on dialysis staff.  Follow through.