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spleenlessvents [userpic]

Almost One Year Later...

March 17th, 2008 (06:30 pm)

current mood: angry

 and life still sucks.  Since my so called friends do not like negativity or complaining BIG TIME, I'm going to try the Sue Grafton technique; YOU KNOW:: "A" is for "apolpexy",etc. 

It's been 9 months, give or take, and life is worse now than ever before.  I recall 2 days last July when I felt hope.  M 
akes sleeping a non-exixtent experience.

If Polly the parrot tells me one more time how much better I am, I'll have to visit the Hemlock society website.

The only concern is my 5 year old "baby dog" who lost her sister to old age in August.  I agrred to stay around for Cookie because I was sure no one else would understand her.  She did her best to keep our deal.  Poo could live with anyone, expecially since she'll have a trust fund.

All my so called friends and family AGGRAVATE the crap out of me; sometimes literally, sometimes figuratively.
Call me ungrateful, but when all you do is go out 3 or more times a week to medical appointments, the last person/people you want to see is company in your bedroom.  Yes it's a "mitzvah" to visit the sick, but not very satisfying or soul/psychic nourishing.  Everyone is great at making offers, and incapable of following through with them.

When you've lost control of your home for 2 years, having someone come in is more that mortyifyng.  Additionally, while I am fully cognizant that everyone has their own life, listening to it becomes exhausting and reinforces the feelings I already have of worthlessness.  NO I CAN"'T be happy for you.  Sorry, I'm too busy feeling sorry for myself and saying goodbye to all my plans.

Can things get better?  SURE, if someone else dies so I can possibly live for 8-10 years.  YIPPEE Skippy.  And for all you who are so busy being grateful you're still alive, Your standards and mine come from alternate universes.

SO THERE!  Frak You!  


spleenlessvents [userpic]

Still On Pity Pot!

I know I'm isolating myself.  I can't stand to talk to anyone who won't talk about their own lives.  Mine just makes me want to cry.  I cannot see to read, watch tv or really type since I never really learned touch typing/keyboard skills.  Besides, each keyboard IS different.

I'll leave you with this quote from Jessie Gruman, Ph.D.'s AfterShock : page 12:

"This is not a normal time, however, and while controlling your emotions may help you take in the meaning of your diagnosis at your own speed, it doesn't change the fact of your condition.  Expressing fear, sadness, anger or guilt will not make your disease worse.  Conversely, remaining chipper and upbeat all the time won't make it any better.

There is an intuitive - but false - link between optimism and health.  The media love a tragically ill person with a stiff upper lip and plucky approach to pain.  Check out the supermarket tabloids and the evening news if you need proof.  There is also a pervasive folk belief that optimism can counteract disease progression.  When these links have been examined scientifically, however, they mostly evaporate.

The point is that what you are experiencing is awful and it is sad.  If you express it, it may be hard for those who love you.  But not doing so may isolate you at a time when you need each other's support and love the most.  "Crying, raging, shouting, and talking about how you feel about the diagnosis will not hurt you physically" said David Speigel, a psychiatrist who specializes in working with women with breast cancer. "It may provide you a sense of relief and bring you closer to those you love - and may do the same for those who love you."

spleenlessvents [userpic]

Nothing New...

In my black hole.  Though my "PD" nurse Ian called about setting up training.  Explained my pd catheter had not yet been un-roofed and my upcoming tight schedule, since I only have until the end of June to complete all the tests for Hopkins to consider putting me on their transplant list.

He will check with my nephrologist and get back to me.  Perhaps we can start on the "dummy tummy".  Then when I'm ready it won't be much training.

Oh joy and unspeakable happiness.

spleenlessvents [userpic]

Am Really Considering...

calling it all quits.  I know I promised my older dog I'd do everything I could to get our lives back, but the reality is day by day I'm losing more functionality.  All my husband's spare time and then some is being eaten away by this illness, so my "babies" get nothing but bedtime with me.

It breaks my heart to think of all the things I've lost.  And, typically, I'm isolating and won't talk to friends because unless they're willing to talk only about themselves, I'm so pathetic I mostly cry.

I know I'm not doing the best things for myself, but don't either have the discipline, willpower, or stamina to reach out anymore.  I do read message boards like homedialysis and that helps some.  At least everyone there is not sunshine and light!

spleenlessvents [userpic]

Was To See Hematologist...

April 25th, 2007 (10:42 am)

for Procrit injection, but just could not go.  Still wheezing.  Am beginning to regret this entire decision.

I'm really tired of everyone telling me how much better I'll feel once on dialysis, when they themselves have never personally been through all this crap.

spleenlessvents [userpic]

Spent Night In Fairly Pain Free Haze...

April 24th, 2007 (03:46 pm)

Due to new drug Lyrica.  This drug is designed for diabetic neuropathy and post shingles  pain.

I had, at one time considered neurontin, but was told it really would not help.

It's interesting how a drug without the strong narcotics I was taking, can be so effective, though it does leave me woozy for an hour or so after I get up!

If you have persistent pain. you might want to take a look here as well.

spleenlessvents [userpic]

Husband Stayed Home...

April 23rd, 2007 (03:24 pm)

with me and called surgeon's office to see if I could have damaged anything.  Reassuring response was it would take being run over by a truck to do that!

Then tracked down primary care doc for more appropriate pain meds.

spleenlessvents [userpic]

Back To Bed...

April 22nd, 2007 (02:40 pm)

full time.   This is getting really old.  I feel like a prisoner in my own home!  I cannot see, typing this is quite an exertion and it feels like an exercise in futility, since I know NO one reads this blog, not even friends or family!

spleenlessvents [userpic]

Crappy Day!

April 21st, 2007 (02:28 pm)

Sat up for a couple of hours, and then on way back to bed, fell in bathroom when legs gave way. I favor one leg due to old back surgery and with all the recent exams, it had been bothering me a lot.  After taking 45 minutes to get up, conclusion is that since catheter was on right side, they favored that when moving me, and neither leg could compensate any longer,  Am in a great deal of pain and quite frightened!

spleenlessvents [userpic]

Was To Go...

April 20th, 2007 (02:22 pm)

see opthamologist, but woke up wheezing.  Anethesia or something else?

spleenlessvents [userpic]

Exhausted From...

April 19th, 2007 (02:17 pm)

yesterday.  Tried cardiologist again,  Still no luck.

spleenlessvents [userpic]

Saw Nephrologist...

who a) didn't know I'd had peritoneal catheter put in and   

b) had received info from Hopkins in form of letter addressed to me with all the other tests I need.  Needless to say, I NEVER received that letter.

On to surgeon who said everything seemed fine and call when nephrologist wants catheter "unburied".

Went home and managed to schedule colonoscopy consult for June 5th.  YUK!  Left message for cardiologist.

spleenlessvents [userpic]


April 17th, 2007 (01:38 pm)

Resting up for tomorow's big adventure of nephrologist visit and surgical follow-up.

Is this as tedious for you as it is for me?

spleenlessvents [userpic]

Yesterday Was A...

quiet day. Nothing much happening,, thank goodness.

spleenlessvents [userpic]

Sat Up For A Couple...

April 15th, 2007 (09:54 am)

of hours. Yay!  I bet you're impressed ;-)

spleenlessvents [userpic]

Starting To Feel...

April 14th, 2007 (09:50 am)

somewhat human, though miserable!

spleenlessvents [userpic]

Another Blur.

April 13th, 2007 (09:40 am)

So much for catheter insertion being a no big deal thing.  My back and bad left leg are really screwed up!



spleenlessvents [userpic]

Today As Did Yesterday...

April 12th, 2007 (09:32 am)

went by in a blur.  Spouse stayed home to to take care of me, bless him! 

Did call to make surgeon's follow-up appointment for next week, though.

spleenlessvents [userpic]

Got To Suburban...

April 11th, 2007 (05:18 pm)

Around 12 noon.  Check in smooth, easy and received comprehensive info packet that included services and tv channels/movies!

At elevator, a woman from metro Baltimore area asked if this was a good hospital, and proceeded to give us the nicknames for several of Baltimore's hospitals (John Hostages, No Mercy, Bon No Cures, that type of thing).  I told her what I knew and about the Maryland and Blue Cross hospital guides (though
I'd take this one with a grain of salt as it involves cost control ;-).  As anyone who has spent anytime in a hospital can attest, you can have the best physicians in the world, but without good staff, your chances of coming out intact are not good.

Went up to surgery where the ever present "pink lady" checked me in,  Staff throughout were kind, caring, compassionate and COMPETENT!  Procedure of course started late and since it took awhile to get my pain under control, we didn't leave until 8:30 PM.  I've learned the hard way that if I start out with pain, it takes what seems like forever and three times as much meds to get it under contol.

The only problem with this is the GI problems it creates along with the Renagel.

To be continued...

spleenlessvents [userpic]

Surgery Day

April 9th, 2007 (10:05 am)

Scheduled to be at hospital at noon.  Saw this interesting article at washingtonpost.com about Shingles: Study: Tai Chi May Help Prevent Shingles.

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