I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis - NxStage Users => Topic started by: The Noob on February 24, 2012, 05:03:29 AM
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i was sitting here this morning reading through mine and others prior posts..
it has been almost 4 months since we came home with Nxstage.
i can say today, that as far as the HH goes, its going very well. DH can and does at times, do all his own treatment start to finish. i will set up the machine beforehand a good bit of the time, but he can do it all if needed.
another trick i read that he does is when he goes to pull the needles, use the blue scissors clamp to the end of the line, then pull it off with his free hand, needle sits on chux pad till he clots.
the day before christmas, i recieved a call that my dear sweet grandma had passed away. i was devastated. she was the only mother i every really knew, and had been in ill health for some time. my brother had lived with her many years and grandpa had been done since 1993. i had tried in vain to get to see her this last 2+ years, but due to all the medical crisis, was unable to.
i left the day after christmas to drive the 900 miles to attend the funeral. it took 27 hours to get here with a short time to sleep at rest stop.
i don't know if i will ever be able to forgive not being allowed to take one week to see her before she passed.
with all this family not living far from us, someone could have helped out for that time. between them and my son, it could have been done. they all knew the situation, but could not be bothered.
i was there for the funeral for 4 days. everyone was drinking 24/7 and trying to kill eachother. i just sat and watched them and remembered why i had moved.
when i left to drive down, i didn't care what DH did to manage his needs. all i could think was i had to go.
he used his catheter, did his own care and labs and made phone calls to fedex and so on. all on his own.
thank God he still had his permacath.
son handled the animals and wood stove and all else.
i left the 4th day to get home, exhausted and heart broken. i brought a few things from grandma back with me. my brother is still there, is on dialysis, with brittle diabetes and liver failure. i will go back to see him this year. i will not take no for an answer.
sometimes i read posts on here i've made and i think i sound rude or pushy or aggressive and i assure you, most of the time i am not. after surviving this medical trauma for all of us the last couple years, i have gotten to the point of being no nonsense about it. if i hadn't been, my DH would have been yet another statistic.
the day i got back, NYE, it was 2 am. the downstairs where dh is was trashed. my sons rooms were spotless.
i got a few hours sleep and spent the rest of the day cleaning..after the 33 hour drive to get home wiht car problems on new years eve..
the next day i had to go get my pregnant daughter who had left her situation and was with my other daughter, who was freaking out and retaliating at my pregnant daughter in a violent manner. it took all day to calm hysterical pregnant daughter. the next day i took her 1.5 hrs to apt to clean it out (one of 4 trips). the day after that we were in town all day seeing about some medical and other benefits she might get.
she did get wic (half a paper grocery bag of items for a month), FS which did help her, and medical. though she does have a midwife for a home birth.
in order to get cash help of 140$, she was required to go to the job center and train daily and put in 35 hours of filling out job apps. she was out looking for work at almost 7 months pregnant.
she did finally get a job at a factory. 8 hr shifts on her feet. they were the only ones who would hire her. i told her we could probably make do without her working right now but she insisted and wanted a paycheck.
we are in the tail end of winter and had a storm last night, 3-4 inches wet snow and maybe 3-6 more today?
i am exhausted beyond belief. my son is now staying at the farm in the kitchen, to give his sister the upstairs here to be ready for the baby. he is heating the kitchen with the electric stove and sleeping on an air mattress.
he did this on his own cognition. he feeds the horses and other animals there too, which he and DH moved back last week by putting hay on the back of the truck, son sitting in back holding leads for 3 horses and walking them the mile over.
we can't afford to heat 2 places, so DH and i still here at other place as daughter is here and it must be heated.
not enough room there for all of us.
i could tell horror stories from the last 2 months..how the holy heck i am still sober i don't know. menopause, diabetes, bone spurs and now SAD's..and no insurance to see a doc, some how i keep going.
the HH is such a small part of the stress these days. it is time consuming and there is a huge bonfire every few days for the trash, but its do-able.
guess i am just posting this because i sort of wanted you all to understand why i sometimes sound irritable.
i don't mean to. i am just overloaded.
the last straw to all this is a few weeks ago i asked the nurse about our certificates for the HH training and lab draws we were to get. she told me it would be in DH name, and i got zero.
for some reason that just hurt and i had a small controlled meltdown at the next appt.
she agreed with me and says will make us both certs, and that the one she was talking about is the one needed to file billing.
i wanted it partly because i was looking for a PT job myself to help out, and wanted to put it on app.
plus dang it, i did the training and work too.
there are just days i feel i can't take anymore. but..here i am..
thanks for listening :grouphug; :grouphug; :grouphug;
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:grouphug; noob :grouphug;
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I think you're a hero...and sometimes heroes have to be irritable to get the job done. :grouphug;
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:grouphug;
You are not only a hero, you are a SUPER HERO!
What you have endured is more than most humans could do. :cuddle;
Aleta
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1. It was obvious to all of us that you were overloaded.
2. Under the circumstances, I don't think anyone would label you as "irritable".
:cuddle;
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Don't apologize! We know how hard it has been for you and we all care about you. Who wouldn't feel overwhelmed with what you have on you!
Kudo's to DH for doing things on his own (even if he left a mess!).
Don't even think about it!!!!!
God Bless,
lmunchkin
:kickstart;
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thank you all of you.. :grouphug; :grouphug; :grouphug;
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Geez, I've had a cold for a week and insomnia for 3 nights, and I feel like I'm going out of my mind...I have no excuse for being irritable while YOU have every excuse imaginable. I don't know how you do it. :cuddle;
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Thanks for sharing all that. I think it helps to unload and it's totally understandable if you're not in a cheery mood. You've got a lot to deal with. Sending you hugs. :cuddle; :cuddle; :cuddle; :cuddle; :cuddle;
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God Bless your little heart, Noob. You hang in there baby, it is bound to get better for you. :grouphug; :grouphug;
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Golly The Noob was on the edge of the cliff, and 'Last Active: March 29, 2013, 09:44:52 AM'.
Wonder how things are going for her!
talker
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Talker, there are just too many IHD members who suddenly disappear, and The Noob is one of them, which is such a shame. I hope she is well.
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Talker, there are just too many IHD members who suddenly disappear, and The Noob is one of them, which is such a shame. I hope she is well.
Thank you for noticing and responding.
From my perspective, am sure that any prayers and healing energies sent, will in some fashion, touch the souls involved here in a beneficial manner.
talker