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Author Topic: Caring for others with chronic illnesses  (Read 197834 times)

Offline Trigger Hippie

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Re: Caring for others with chronic illnesses
« Reply #1125 on: May 30, 2013, 06:19:06 AM »
I so understand the problems with not knowing.

Thinking of you both.

N
x

Offline Sara B

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Re: Caring for others with chronic illnesses
« Reply #1126 on: May 30, 2013, 07:23:54 AM »
Dear Chuck, Mia, Tony, Fritz, Nancy, Barbara, Linda, Jess, Sue, Debbie, Roby and Nick - sorry about the list, but I do so much appreciate each and every thought. I know some people might feel that a forum like this is not a place for private worries, and I can understand that too, but for me it helps so much to have the extra support.

I don't know how much improvement we can hope for - both conditions are incurable, though often manageable - but I AM still hopeful.

And Fritz - I love to have the prayers of your choir. :)

Offline morrobay

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Re: Caring for others with chronic illnesses
« Reply #1127 on: May 30, 2013, 11:34:37 AM »
I think this is the perfect place to be able to come for support....you have it here...
Bye, Felicia

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Offline Sara B

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Re: Caring for others with chronic illnesses
« Reply #1128 on: May 30, 2013, 11:53:38 AM »
Thank you, Nancy - I really do feel it :)

Offline tfferg

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Re: Caring for others with chronic illnesses
« Reply #1129 on: May 30, 2013, 05:00:25 PM »
Sara, I do hope that the treatment will be quickly effective and that your needs are met too. You have been and will remain in my thoughts.

Offline jack

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Re: Caring for others with chronic illnesses
« Reply #1130 on: June 01, 2013, 07:32:54 PM »
sara, i am so sorry to hear of your husband's decline.  in honesty, it doesn't sound good.  i will pray that you both have that peace that passeth understanding that fritz would mention.  it is a good place to be at times so challenging.

"through Seneca Falls, and Selma, and Stonewall..."

Offline Sara B

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Re: Caring for others with chronic illnesses
« Reply #1131 on: June 02, 2013, 04:26:55 AM »
Thank you, Jack, and those are good words. I am very worried, but haven't given up hope for some improvement.

Offline Sara B

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Re: Caring for others with chronic illnesses
« Reply #1132 on: June 02, 2013, 04:28:26 AM »
Sara, I do hope that the treatment will be quickly effective and that your needs are met too. You have been and will remain in my thoughts.

Good to hear from you, Tony, and thanks. I'm sorry I didn't get my Australian trip this year - it would be nice to see you both again.

Offline Sason

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Re: Caring for others with chronic illnesses
« Reply #1133 on: June 02, 2013, 05:06:30 AM »
Sara, you and Michael are in my thoughts. Good wishes for some improvement with the new treatment. I'm glad you're feeling some hope.

And, as someone mentioned, don't forget to take care of yourself too, in all this. It's important, otherwise you won't be able to be there for Michael either.  :-*

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Offline MaineGirl

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Re: Caring for others with chronic illnesses
« Reply #1134 on: July 18, 2013, 03:13:22 PM »
It's been some time since I've posted about Michael's health. At least the symptoms of uraemic poisoning, headache and nausea, have pretty much gone, but the weakness is no better and he is only able to walk slowly for 5 minutes or so, and has no energy for most day to day activities. He has lost quite a lot of weight, especially muscle, and is fairly anaemic.  There have been various setbacks in the last few months, including a small stroke, all of which he has pretty much recovered from, but which haven't helped. He is up and about but tends to fall asleep frequently during the day, and feels the cold badly. I think everyone hoped the the dialysis would achieve more improvement than it has.

Apart from the anaemia, none of this is particularly typical of multiple myeloma (a bone-marrow cancer), the root cause of his kidney failure, and the levels of the cancer are not rising at the moment, but the haematologist feels that the time has come for more chemotherapy and steroids. This will be starting next week, in tablet form. The side-effects of lenalidamide shouldn't be too severe, but will tend to exacerbate what he's feeling at the moment, at least until it starts to take effect. He'll be monitored regularly and assessed after 4 months.

It was a relief, because something had to be done. I just wish they could be more definite about the reasons for him feeling bad – it would somehow help, for me at any rate.



(((((((((Sara and Michael)))))))))))

I know this is late in reply, but you are both very much in my thoughts.  Healing thoughts and prayers for Michael... and for you. 
"It is no accident that we all lie nestled together in the curves of the universe.  We are tugged by the forces of the celestial tides.  Time folds in on itself and outward again in gladness as we spin around, each of us an utter miracle in a sea of tiny white stars."  Jamien E. Morehouse

Offline mcnell1120

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Re: Caring for others with chronic illnesses
« Reply #1135 on: January 17, 2014, 03:33:37 PM »
This New Year hasn't been that all great.I've had nothing but bad news since December.

My cousin who is only 55 yrs old was diagnosed with liver cancer.He kept it a secret from us all for a few months.Especially his parents who are elderly of course and battling their own illnesses. My uncle has signs of Parkinson's and my aunt was just diagnosed with stage 2 Alzheimer's. My other cousin,his sister, had to move back home from Florida to Chicago to stay with parents when we all found out about her brother.She had asked us to visit them during Christmas because it will probably be the last Christmas together. We went...it was terribly sad. He looked horrible.Hardly said a word,was just looking around and taking it all in.I was wondering what was he thinking. Absorbing it all,our laughter,our tears! As we said our goodbyes he hugged me and said I love you guys.The only words I heard him say all night. I cried all the way home.

He is in ICU now. Having to go through dialysis.His organs are shutting down. Now we wait

My aunt and uncle?  They visit my parents every other Tuesday.It's a matter of time they won't be able to drive.My mom can no longer move around either. Shit,it's so tough to get old. To get sick.

I continue to pray for you all. For strength and peace in your hearts!

Nellie
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Offline CellarDweller115

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Re: Caring for others with chronic illnesses
« Reply #1136 on: January 17, 2014, 08:44:24 PM »
Damn Nellie, I'm sorry to hear about all this!   Sending your family strength and love.

Offline Tony_

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Re: Caring for others with chronic illnesses
« Reply #1137 on: January 17, 2014, 09:16:08 PM »
  Nellie, from another Brokie, all my hopes you and your family see better, as much as possible, after so much gone painful. It's beautiful that you ended your post by saying you kept us all in your prayers. I'll keep you in my own, as well.....

Offline Sara B

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Re: Caring for others with chronic illnesses
« Reply #1138 on: January 18, 2014, 03:27:50 AM »
Nellie, I'm so sorry for all the sadness and worry in your life at the moment.  :-*

Offline jack

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Re: Caring for others with chronic illnesses
« Reply #1139 on: January 18, 2014, 03:42:29 AM »
nellie, i remember my surprise when i found myself unburdening myself as i found myself enmeshed in my mothers dementia, and my limited abilities to cope and try to advance the situation.  i had no family, and friends not in the situation were in fact useless because most of them were much younger and simply hadn't experienced that kind of pressure yet, or if they had, they had spouses and family to share the burden.  strangers, and folks here on the forum showed empathy, gave encouragement, reminded me that in time the situation would change.  i did the best i could, got my mother in care, and got her a legal guardian who had office staff and the knowledge necessary to properly place her and deal with the financials.

of course, no sooner than i had breathed my first sigh, ready to resume my own life, than my health plummeted, and that plus a drunk motorcyclist, put me in the hospital and long term arthritis and back injury removed my ability to walk without assistance.

there is of course a happy ending.  i still need a walker for anything longer than a walk to the bathroom, but the fact is i AM able to take care of myself, and despite my meager finances, i lucky blip in those finances allowed me to move out of southwest florida and the social environment that was strangling the life out of me, and plop me down, alone as usual, on the island of oahu, the city of honolulu, and a capricious greater power even provided an unexpected significant other, quite literally out of the blue (hawaii).

i believe strongly the death is just another stage in the cycle of life, and what matters is not that you are going to die, but that you have lived as fully as possible.  that is my wish for everyone, to live fully and love deeply.
   
"through Seneca Falls, and Selma, and Stonewall..."