Sending Healthy Wishes to Karen/Button!

[Diane C]

Karen/Button,

I just read that you are in the hospital -- for over a week. Agree with Bill... UGH! Am so sorry and sending you waves of healthy energy. Severe small bowel inflammation, C-Diff, and Addison’s crisis. You've helped all of us so much. Sure hope you recover and can get home soon. Please keep us posted. Please get better soon. Am sure you've a good team of doctors and others there.

Thinking of you ALOT!

Diane C.

2000 MACE irrigation system for chronic, genetic constipation/distention
2002 Colostomy
2015 Surgery for Peristomal Hernia and Abscess
2018 Ileostomy and Removal of Colon, MACE, and Rectum -- last due to diversion colitis

[danilynn]

Sending healing thoughts your way!

[To Dream a Dream]

Add my best wishes, healing thoughts, prayers & good energy to Karen. You are our valued teacher & friend. Please know we care.

[Button]

Ah . . . Thank You for thinking of me. It really does mean more to me then you may know.

I am losing track of time, that’s for sure. The concept of time becomes a blurr while in the hospital. I think I am at about day 15 inpatient? I do not really know.

Not much has been gained with this hospitalization, unfortunately. It is a reflection more of my compromised health than anything else that I am unable to “turn the corner.” My Palliative Care MD and I have decided on discharge to home tomorrow - as I want to be home. Enough is enough.

What, on earth, has happened to medical “care?”

Not once has any one offered to change the bed linens (my mother finally took to the task on Mother’s Day). Not once has anyone offered me a basin of warm, soapy water. The nurses and physicians spend an inordinate time looking at the computer screen and entering data into the electronic medical record. Pain control has been miserly (I gather due to the opoid crisis and increased prescription oversight). I had a CT/MRI that was scheduled for 8 pm . . . imaging department was running behind . . . transportation finally came for me at 12:30 AM. Yes, 12:30 AM.

I want to crawl into my own, familiar bed.

Thank You for any well-wishes. I can certainly use them.
Karen

[To Dream a Dream]

So glad to see you managed to post. Agree wholeheartedly about the lack of personal care in house. Hope you can be home amid cleanliness & order & quiet soon.

[sassie]

Karen As i stated in a earlier post, My heart truly aches for you,I'm glad your getting to go home, best place to be when no one seems to do there best anymore at hospital,best place to get sicker anymore and you are sure correct about clean rooms and getting to wash up etc. it is far worse then when i was younger in a hospital.Again May God Bless YOU and your in my prayers,sassie

[lms1]

Hi Karen,

I am sending you healing thoughts and prayers. Your hospital visit sounds terrible. I am so sorry. I had just the opposite experience last year.

Gentle, virtual hugs,

Linda

[michael a]

Hi Karen. I haven't been here for a long time and was so saddened to read about your situation. IMHO you've provided so much help to so many of us. Your advice was at times more valuable than that given by doctors, nurses and other medical persons. I'm not exaggerating! I felt like you carefully researched or personally experienced all the stuff you shared with us. I was able to trust everything you brought to us. Fortunately for me things have gone very well and that's why I've been away. Now I feel selfish.
Please get real well real fast.
With sincere gratitude,
Michael A

[nickolas]

Sending you warm wishes and love. I pray you are on the road to recovery. As I responded in that other thread, you will be in my thoughts and prayers.

Lee

[Diane C]

Hi Karen,

Hope by now you are home, snuggled in comfy pjs or a robe, resting up. Is someone there to help? Your mother or a friend? Wish I could fly out to OR (which I loved several years ago).

Wishing you rejuvenating naps if they help. Maybe streaming shows? Music? Meditations by Tara Brach and her husband (my meditation teacher),Jonathan Foust? Whatever helps the spirit! Are you eating and hydrating? Hope so!

Agree -- hospitalization has changed. Definitely no longer a vacation. Boy, has THAT changed since adolescence! I did find some wonderful, hard-working nurses and aides who were over-burdened and yet super helpful. And the xray techs down in the hospital's chilly basement where the equipment had to stay cold –- in November -- gave me such cheer. I reported all that to the hospital. But overall, I’m determined to lose weight and not return any time soon if at all possible. Your words of wisdom about weight loss and exercise are in my brain. I swing danced last night for an hour non-stop – felt fabulous! Tomorrow is my first appointment with the PT since my wound healed. Your wise counsel helped immeasurably.

You might enjoy some youtube videos by zzdogmd. Especially this one: https://zdoggmd.com/emr-killed-medicine/ If unfamiliar with him, zzdogmd is really Zubin Damania, MD, a UCSF/Stanford trained internist who’s trying to change the medical system along with his supporters, Z-Pac (https://zdoggmd.com/about-z/). I joined although I sometimes quibble with his criticism of the “natural approach.” Ignore the expletives. Like him, I think anti-vaccers and others could use some education. Am not a massive fan of his Darth Vader videos – each to his/her own but he IS entertaining – and I hope making a dent. If you have interest, peruse his incident reports or songs in which he shows appreciation for nurses. I spent too many hours watching these.

Or stick to dog and puppy videos!

Sending more healing thoughts – and “puppy love” even though neither of us has a dog now. Wish I could send one to visit you.

Hugs! Post only when energy allows. We are pulling and pushing for you!

Diane C.

[sharon]

Be well, dear Karen, my thoughts are with you.

Sharon

[Button]

A sincere Thank You and appreciation for the expression of well-wishes. It means more to me than you may know.

My update is less than encouraging.

Like a looming dark shadow that has been following me, my laundry list of health challenges seems to have caught with up me and now has the upper hand.

I am now dealing with an acute GI bleed, in addition to the C-Diff, severe small bowel colitis, and elecrolyte imbalances.

I decided to come home yesterday as the hospital has done what can be done, and continuing to stay had limited benefit.

20+ years of glucocorticosteroids are taking their toll. Internally, my body is breaking down and decompensating.

My intestines are, quite frankly, a smelly mess. The ostomy output is like sewer water. Copious volumes of liquid. The sense is that my intestinal lining is “rotting.”

I receive home Palliative Care services (care and comfort). My path forward is uncertain. Any and all wishes for granting me emotional grace and easing of body pain will be gratefully received.
Karen

[sharon]

Sending much love to you, Karen.

[Diane C]

Thinking of you so often, Karen. Wishing you to be free of pain and and challenging times. Sending you peacefulness and grace.

Hugs,

Diane C.

[lolapergola]

HI Karen , am glad you re at home now with your creature comforts .Hospital is no place for the sick ! I hope you can draw comfort from all the support you have here ,
love and best wishes
Lola x