Hanging on by a thread

[Jean]

So sorry kit, that you are feeling so miserable and so much in pain. Sorry too that you lost your furbaby. You have been tough and strong all of this time, so it's okay that sometimes you just let it all hang out. You have the solid support of your entire IHD family, and that is a LOT!!!
Get better
Love you

[PrimeTimer]

KK, I was thinking about when the Lyme disease really had me on my knees. I learned to drop the f-bomb with a vengeance. I found I could string 6-10 bombs into one sentence and just keep it going, just letting out the frustration. Maybe that would help you a bit.

It went something like this:

I'm so f'ing tired of this f'ing disease that keeps me so f'ing tired in in so much f'ing pain that I can' f'ing enjoy any f'ing life.

As strong as you are, I know you must have hit a pretty bad low to share it here. I'm just grasping at ways to help.

 

Sending hugs.

Aleta

Tried out your idea today. The person I said it to replied "WHAT DID YOU JUST SAY!?"  So I repeated it. Gotta say, it felt pretty good. Quite uplifting, actually. 

[willowtreewren]

KK, I was thinking about when the Lyme disease really had me on my knees. I learned to drop the f-bomb with a vengeance. I found I could string 6-10 bombs into one sentence and just keep it going, just letting out the frustration. Maybe that would help you a bit.

It went something like this:

I'm so f'ing tired of this f'ing disease that keeps me so f'ing tired in in so much f'ing pain that I can' f'ing enjoy any f'ing life.

As strong as you are, I know you must have hit a pretty bad low to share it here. I'm just grasping at ways to help.

 

Sending hugs.

Aleta

Tried out your idea today. The person I said it to replied "WHAT DID YOU JUST SAY!?"  So I repeated it. Gotta say, it felt pretty good. Quite uplifting, actually. 

PrimeTimer, the first time I did this it took my husband somewhat aback since I'm generally a pretty mild-mouthed person. But he got on board when he saw how much it helped me cope! 

Aleta

[kitkatz]

Hanging be a thread.
Hanging by a thread
Looking at my life with a lot of dread.
Needing to clear my head.
Hanging by a thread.

Things that are making me crazy:
Hubby will not call our local handyman. I have a list of eight things that need doing in the house.
I cannot turn on the ceiling fans in the house until they are dusted and I cannot do it.
Every time I eat my tummy is upset. Either I feel nauseous or it goes straight through me and I am up all night.
I am starting to hate to eat anything and I love to eat.
I cannot sleep at night anymore.  I am up until 3 a.m. Then sleep till noon. So yes I am getting some sleep.
I am using Ambien at dialysis just to stay calm and get some sleep.
I have no access to my car.  Hubby needs to hook up its battery so I can run around on my own.
I do not feel like myself.

I hate the fu*(&ing disease and all of its fu(*&^ing crap.

[Sugarlump]

God I hate it too
I hate what it does to us as people
(I want to be the person I was before ESRF)
I think everyone does have points when they consider the future and feel like stopping...I know I have on a couple of occasions ...
I have got through them so far but I know I am only ever one crisis away...
It's not a subject that's talked about and if you express the view people tend to say unhelpful things like "don't be negative! or "you don't mean it"
Our inner voices need to be heard...

 

[kitkatz]

So early this morning 3a.m. the inner me speaks. Loud enough for me to hear it. 
It says figure out who you are now. What you want and need? What makes you happy?
What needs to change?
So I developed a spreadsheet with questions across the top for me to answer.
I plan to sit a little everyday and think about what is on it.  Write about each thing if I need to.
Find my new purpose.  I taught kids and gave of me for so many years.
Now I sit and do not much. 
Got to figure it out.

[Rerun]

Hello, I'm up too.  I should call you but don't want to wake the rest of your household.  Some Idiot rang my doorbell at 12:56am and my dog went wild and I have not been able to get back to sleep.  Although, she is snoring away! (Bitch) (said lovingly)

Do you like crafts?  Maybe quilting?  Something to draw out your creative side?  It makes me feel good and the time going by is useful to me.  Right now I'm buying fleece material and making blankets.  Not the tie ones.  I crochet around the edges.  They are so cute. 

I think I know how you feel.  What purpose do we have?  You have your husband and now 4 kids.  Grand-babies you want to hold.  Until then get a puppy... you won't have time to think.  And you will smile again.

Hope you find yourself.  We love you.    

[kristina]

So early this morning 3a.m. the inner me speaks. Loud enough for me to hear it. 
It says figure out who you are now. What you want and need? What makes you happy?
What needs to change?
So I developed a spreadsheet with questions across the top for me to answer.
I plan to sit a little everyday and think about what is on it.  Write about each thing if I need to.
Find my new purpose.  I taught kids and gave of me for so many years.
Now I sit and do not much. 
Got to figure it out.

Good thinking, kitkatz!
Could there be a chance to help kids with difficulties to learn at school
and you could assist them to get "back on the road" again?
Would that not be a great idea and bring you also lots of fun?
After all, you are a very good teacher!
Best wishes and good luck from Kristina.

[talker]

Reminds me of some events in my life.
Amazing how one actually survives that which life tosses at them.
One thing for sure 'this too shall pass'.
That your quality of life rapidly improves.

http://www.thetalker.org/archives/228/the-pit-in-the-cherry-and-the-guitar/

[willowtreewren]

So early this morning 3a.m. the inner me speaks. Loud enough for me to hear it. 
It says figure out who you are now. What you want and need? What makes you happy?
What needs to change?
So I developed a spreadsheet with questions across the top for me to answer.
I plan to sit a little everyday and think about what is on it.  Write about each thing if I need to.
Find my new purpose.  I taught kids and gave of me for so many years.
Now I sit and do not much. 
Got to figure it out.

Brilliant! You are a warrior AND a problem solver. 

Love you.

Aleta

[jeannea]

Kitkatz, your strength is shining through. You're going to get through this valley. We're here for you.

When nausea was a constant for me, i had a way of choosing food. I would stand before the pantry and fridge and think about the foods I saw. Whatever didn't turn my stomach I ate. Whatever it was. I hope you can eat better soon.

[Stu]

Hey KK

I haven't been here for a while, but came in this morning and read your post. It really hit me between the eyes

One thing I have found helpful, along the lines of what others have said, is to get in the car, drive about 30 minutes out to the country, get out of the car, lean back on the bonnet and scream out all the things that are frustrating me. Hopefully I'm far enough away from anyone so that no one can hear me.

I don't let my wife come with me, sometimes there are things that she's doing (or not doing) that frustrate me as well, you need to be able to get EVERYTHING off your chest

Sometimes it works for me, sometimes it doesn't. Maybe worth a try?

[PrimeTimer]

So early this morning 3a.m. the inner me speaks. Loud enough for me to hear it. 
It says figure out who you are now. What you want and need? What makes you happy?
What needs to change?
So I developed a spreadsheet with questions across the top for me to answer.
I plan to sit a little everyday and think about what is on it.  Write about each thing if I need to.
Find my new purpose.  I taught kids and gave of me for so many years.
Now I sit and do not much. 
Got to figure it out.

You might be on to something with that spreadsheet. I use to write letters to people but then never send them. Well, once in a while I would. Someone said handwritten letters are kind of a lost art but that's beside the point. Writing lets me get (good or bad) things out. Whether it's in a letter or just some chickenscratch on a note, helps me to get things out. Another thing I'd do was make handmade bags and fill them with things for kids at an orphanage, along with buying and collecting shoes, clothes and toys for the children. At first I thought I was providing for only a few kids but the list turned into 80 kids. Couldn't fill that list all myself so I employed the help of coworkers and literally overnite my desk was overflowing with donations. Humans can sometimes be amazing people. Anyways, your spreadsheet reminded me of something I should get back to doing.

[kitkatz]

I finally figured out from my writing things out, I am trying/struggling to get out of that survival mode I have been living in for the past years since I had major league infections and surgery.
Some of you will say : "Well duh!"  Trying tog et back into life an do things and think right has been a struggle for me.  I am still working on trying to discover the true me.

That was the good news!  Now here goes...
I saw my internal medicine doctor yesterday  He says we will be seeing more of each other.  He  thinks my cough may not be allergies and asthma so is investigating fluid overload and possible heart complications.  So an echocardiogram next week and I see him in three weeks instead of six months.  At least I had the brains to consult him.

The kids took me to a live WWE event last week and we watched Wrestlemania on Sunday.  I have the Barry Manilow concert ticket sin hand for April 14th at Staples center.

[PrimeTimer]

The echocardiogram should answer some questions for you. My mother was diagnosed in her late 50's with congestive heart failure. One side of her heart was enlarged, causing her to have a little cough, which they said was actually fluid building up/backing up in her lungs. And then one day, she had some neck pain, nausea and a "silent heart attack", which was revealed by an EKG. They called it a "silent heart attack" because some people, particularly women for some reason, don't always have the obvious classic symptoms of a heart attack, such as chest pain, clutching your chest and falling to your knees, etc). Anyways, they thought her heart may have been damaged by a fever caused by a virus since she had gone so long in life symptom-free (opposed to being born with it) but they said it would be impossible to ever prove. SO...she was put on various medications, such as water pills to help lighten the workload of the heart and Coreg, an old heart medicine that has been around for ions but usually used short term following a heart attack however, in her case, the cardiologist, who happened to also be a heart transplant specialist involved in studies of Coreg, proved that long term, Coreg actually helped to strengthen the heart. Long story getting longer....my mother had to take a lot of pills but felt so much better, the woman had more energy than I ever did, she lived many years being active and fit, no one would have ever guessed that she had congestive heart failure. And she didn't die from it. That's a story for another day...

My point, maybe while you were in the hospital you picked up a bug or it was one of those "major league infections" you mentioned and it did damage but maybe they can pinpoint the problem and prevent further damage. Like in my mother's case, the meds strengthened her heart and in turn, it was like she was given a second chance at life and she ran with it. Literally.

Sheesh, you certainly have been thru a lot! Glad your writing has helped, altho right about now, if it were me I'd probably be writing a lot of cuss words. Ah, a Barry Manillw concert would be A LOT of fun! Maybe that's part of the "true you"....a Manilow groupie!

[kristina]

Hello kitkatz,
I am so glad that your health is going to be sorted with further medical investigations underway.
I do hope, that an easy treatable medical way forward is being found for you soon !
I also had an echocardiogram recently and it "only" took 1¼ hours, but it was very precise
and the time spent on it was worth the results !
I wish you good luck and all the best,
Kristina.

[jeannea]

I would never say Well Duh to you. Dialysis is hard and you have gone so many years. You're just doing the best you can like all of us.

That's good you saw the cardiologist. And at least Echos aren't painful. I rank tests in order of how much they torture me. I'm sure you've had one before. I'm often drifting off to sleep. Last time my tech looked like he was about 17.

[Sugarlump]

Line insertions and biopsies come pretty high on my list of tortures...

[willowtreewren]

I've been traveling and out of the loop. Oh, KK, Barry Manilow sounds divine! 

I hope the other cr@p can be sorted out.

Sending you hugs.

 

Aleta

[bainp001]

There are so many people who are sending you well wishes as am I.  We are blessed for those who understand.  Maybe you can help me.  My mom is just as  http://ihatedialysis.com/forum/Smileys/classic/cry.gif   as you.  I've tried to comfort her.  We talk, we laugh, we cry, we pray...but you know what's like.  Would you write something to her?  Her name is Dawn.

[kitkatz]

I have the test results of the echocardiogram from my internal med doctor. Pulmonary hypertension and a sticky heart valve. 
Consults made with pulmonary doctor and cardiology doctor follow ups, then off to see the internal med doc to put it all together.
Should be putting things together by 23rd of April to see where we go from here.
I am down from 98 kilos to 95.2 and still pushing on the fluid.  I think I have lost some weight somewhere and the fluid is staying and we have not pushed at it enough at dialysis.
We are backing my dry weight down slowly so I do not feel the cramps or low bp when I have had enough.

[jeannea]

I hope they can help you feel better. Too many things going on.

[graciekycats]

I feel your pain kitkat I wish I could hug you hard and take it away. Losing a pet is very hard. But you need to grieve in your own way when you are ready.  Dialysis doesn't help but it is your life source.
There are times you just want a pity party - go ahead.  A good cry is good for the soul. I'll keep you in my prayers!

[kitkatz]

I have gathered Missy's records together and kept first vet records and last vet records, her adoption papers from , BARC, her training class certificate and certificate from the vet and the two cards we received.  Her groomer sent a card and the vet office sent a card with all the vet techs signing it.  We have been with them since the time they opened in the Petsmart.  They knew Missy and I from all of our visits.  I have everything in a folder for now, but am going to get a shadow box and print pics off my computer and make a memory for me.  I will use her collar as one border and they gave us a pawprint made of clay with her ashes in a box.  So I will work on my memories of her and make something.
I also went to Target and bought a basket full of dog and cat food and made a donation to the local pet shelter in San Bernardino.  They are on donations and volunteers now that the city is bankrupt. I made the donation in Missy and Cocoa's name.  Cocoa I got from the San Bernardino shelter almost 28 years ago.  She lived to 14. She was a loving sweet companion to my girls.  Missy was my dog. I found her through the BARC organization at the local Petsmart adoption event. 9 months to a year old.  Ugly as hell all legs and head, she had not grown into her body yet.  She grew into a beautiful, sweet chicken hearted dog. Afraid of thunder, afraid to go the vet, shook all the way there.  I still miss her. we currently have Danielle's dog living with us and she helps to fill the gaping hole Missy left a little bit.

[PrimeTimer]

Dang!! Sorry about the pulmonary hypertension and sticky valve! I have had the same Internal Med doc for more than 20 years. In other words, I've been able to trust him. He once told me that it was his job to know "the entire body" and after looking over all test results, should be able to decide which type of specialist would be needed. He never steered me in the wrong direction. Hopefully your Internal Med doc will know who can get you all fixed up. Everybody hates taking pills but in this case, maybe you will just need the right medicine and not surgery. On the other hand tho, maybe surgery could permanently fix the problem or have better lasting results than medicine. 

I haven't done it yet but I have the ashes of a beloved cat and sometimes think about placing them (they're in a bag) inside a stuffed toy cat that looks like him. That way, I can look at him with a little more cheer.