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Hi guys,
I have been missing in action for a while due to another death in the family...I got a 2am call that had me in a plane across the Atlantic 6 hrs later (never moved so fast in my life)...
The death of my best friend's mom was not unexpected but there was no timeline in how much longer she could live...she died, sitting up in her chair (after bingo!) with no tubes or artificial anything attached to her...a lovely way to go...
I had asked her if she would allow me to accomplish my own mourning period for my mother at the same time as she did for hers (we sort of shared mothers growing up and I was unable to be there for my own mother's death, funeral etc) and she said arm in arm, we stood for the eurolgy, burrial and the 7 days of mourning and traditional prayers...locked into a ritual of mourning, healing and closure that is not just necessary but salutary...we were surrounded by family, friends and loved ones who really were there for us the whole time...I was amazed and oh, so grateful.
I have been living in a black abyss since my own mom died 8 months ago and unable to move forward so this rite of passage, if you will, was essential for both of us...we cried for both of our moms who we loved beyond measure or understanding, reliving the good and bad and deciding to throw out the bad and only conserve the best of memories...we need to be able to live the rest of our lives facing forwards, at peace.
I burried a part of my mom beside hers, a fittting gesture being that all of our lives had been so intimately intwined over the years and hope that some of the pain, both physical and emotional that I have suffered this last year, will evaporate.
I feel 'lighter' and freer for the first time in ages and hope to be able to move on...closure is such an important part of our lives and should never be neglected...not even post op, post collectomy or any other radical medical change in our lives.
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While it saddens me to learn there was another tragedy in your life, adding new turmoil, I'm happy to learn that it allowed you to reconnect with a close friend, and complete the mourning of the loss of your mother. I imagine that your husband's brush with death brought home to you that life is short indeed.

Sounds like you are ready to take on the future with renewed hope and happiness.

Each day is truly a gift, isn't it?

Jan Smiler
Yes, things are/were in a huge turmoil but are getting better...hubby still scares the pants off of me every time that he cannot breath or has arrethmias etc but I am dealing with is up to me to decide how I deal with things and need to learn to control those negative emotions (no easy feat)...saying goodbye to my mom may yet help me to master the rest of my life's journey...At least it will procure a little peace in my soul...
I got some good news while little cousin (16yrs old) had his last chemo treatment and his most recent scan was clean!
So nice to have some happy news for a change.
Oh honey,

I'm so sorry you had to endure all this, all my love and deepest sympathies are with you always, but I'm really glad you've turned a corner, just take all the time you need, it will get better in time. I always take comfort in knowing that while we may loose our loved ones in the physical world, they will always be with us. You may not be able to see them, but trust me, they're there, guiding you. And know that I love you, and will always be there for you,

Eric xoxo
Thanks guys,
My best friend is the one whose couch I lived on for 8 months during my 5 surgeries, her hubby handed me his gold card and told me not to tell him what they cost...she paid for my surgeon to fly over here and operate...we have known eachother for 41yrs, introduced by her mom...she held my hand & head during more surgeries than I can count, gave me love, hope and restored my dreams when all was lost...flew over and tag-teamed with my Canadian surgeon when he did the emergency surgery here...I would not be alive without her...
She is a kind and generous soul...her mom was a challenge, like mine, and we suffered equally with them but she honoured her and cried her soul out that day...I honoured her for giving life to my best friend and my mom for mine.
I have seen her scream at my surgeon (they are both barely 5 feet tall) and nag him about my suture lines threaten him if her dared to remove my pouch...I was blessed the day she was born.
I have cried a lot this last week...this last year really. It is time to start a new year and a new, healthier life...hopefully without all the pain...
Thank you guys, for being there for me
Hi TE,
He is in full PTSD mode and even more so since I was obliged to fly home for 10 days...panic, fear of sleeping alone in the house, listening to ever ache, pain, palpitation and cramp...he is lost between what to do and not do (yelled at me this morning for Not letting him vacum the house!)...I am very regretful that I did not insist on him going to the cardiac rehab center...A place where post cardiac patients go for 6hrs/day 5days/week for the 1st 2-4weeks post heart attack...they see dieticians, nutritionists, phisiotherapists, massage therapists, psycologists, sports coachs, learn how to eat, sleep, drink (fluids), exercise etc and what their limits are, what to look out for and beware of etc...
He preferred to skip that step and go strait to the 'I am fine and I can take care of myself' he is in a panic induced nightmare. (so am I)
I will see the Cardio surgeon next week with him and be able (hopefully) to help him to dial down the drugs and thus the stress...until then, I am on a very, very short leash. drats
ps...I am at least better
Planning to run away and hide somewhere this forwarding address! I need a minor hybernation and escape from pain (both physical and mental)...not sure if I will be able to do it though...I need to see the 3 men in my life surgeon, my rhumey and my real estate agent!
We have to decide if I will have the laporoscopic surgery to reattach my pouch this summer (before the poor man retires forever!) or if not, rhumy has to give me something for this sacroileal pain and maybe a longterm plan for physio/treatment and finally a I need to find a home that is better adapted to my and hubby's health issues and conditions...too far away from everything and need a simpler lifestyle...then, If all goes well I can run away...(and see my poor dad...)
Then maybe it is time to look into other options? If your pouch, 10 months out, is unmanageable then you need to be going back to see your surgeon and find out why...because that is Not normal...and dangerous for you (dehydration, denutrition, exhaustion...) but none or that is Jan's fault...just your pouch's. Talk to your doctors and find a solution to the pouch's problems...they could be as simple as food alergies or as complicated as pouch failure but solutions exisit whether you like them or not you will have to have this resolved.
As much as the thought of moving gives me hives, the thought of staying here gives me nightmares. My home is not adapted to my condition (too far from everything, a 1 mile walk uphill to the subway or a 3 mile hike into town (strait uphill)...I cannot keep doing this or it will kill me now that I am back to work...carrying books and papers for school...too much weight to I am off to find a smaller place with a better transportation grid and less to clean...
She was speaking for herself. Did you see her speaking for anyone other than herself? Why are you directing anger toward someone who had nothing to do with your current situation? If you don't like your j-pouch then you should consider a permanent end ileostomy. Have you tried things to help lessen the amount of bathroom trips? Do you take medication to help? Have you altered your eating and drinking preferences? Have you had a doctor look for reasons for the excess bathroom trips? Perhaps you could let us know what you've tried and people here can give you other things to try.

You have probably been told that it can take a year or more for things to settle down and you haven't gotten to that one-year mark yet. But really, if you're as miserable as you sound, either have a diverting ostomy or a permanent one.

kathy Big Grin

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