Last week’s blog post brought important comments that ranged from loving the title of Dale Jorgenson’s stoma (Sir Leaks-A-Lot) to recognizing the necessity of preparing spouses for dealing with supplies, etc. if an Ostomate becomes unable to do so themselves. It is my hope that as the numbers of Ostomates increases, there will be more Wound and Ostomy Continence Nurses (WOCN’s) to assist as needed on an outpatient basis. My vision includes WOCN’s making house calls to guide worried family members.
Of course, ostomy supplies are only one part of what we all need to feel prepared to cope with sudden shifts in caring for loved ones, including, as my friend, Laura pointed out, websites passwords, etc. Thank you for that, Laura, because we need to have as much information as possible to reduce the anxiety associated with changes.
To that point, I wanted to provide extremely valuable guidance from my friend and fellow Ostomate, Judy Zucker. She is a Grief Counselor, professionally known as Judith Zucker, LCSW, and she gave me a very important suggestion I am passing along. Although this is directed toward helping people grieve loss, a large part of her practice, it can be very helpful for all of us who are dealing with the anxiety of coping with the myriad of challenges we face. This information may be particularly relevant to those watching loved ones suffer, which may make us feel very separate from the loved one…
“…getting through the nights are tough. Having anxiety attacks are normal…and when you are newly alone, (or feel alone) it’s really scary. I always suggest asking three friends for their phone numbers and if it is alright to call them in the middle of the night. Then I suggest scotch taping the names and phone numbers on your night table, because when we are scared in the middle of the night, we can’t remember who our friends are and how to reach them.”
I am reminded that there have been times when I have tiptoed out of my bedroom, leaving Bruce asleep, to call my sisters, my go-tos when the anxiety overwhelms. Fear and worry ate away at the ability to think clearly and rationally, and I am grateful they would pick up the phone. Until my ileostomy, I never knew I could have peace and days without the constant worry about hospitalizations, wondering if the day would end in the ER or the OR.
Judy’s point is so well-taken and we all need our “go-to” people for peace of mind, so let that be a decision we take the time to make. Let that person/s know they are your “go-to” if they are amenable, and that you will be there for them, as well. The nights can be scary, but peace of mind may be the gift we can give ourselves with a little thought before we turn out the lights.
Ellyn,
You continue to reach out and advise not only ostomates but the rest of us who live them and struggle with our own issues.
Taking a moment to read your sage advice is well worth the minute or two to learn and support you. You obviously spend much more time in conceptualizing and writing your bogs. We’re grateful!
Thankyou, Merle, and I am grateful you read and comment. There is no end to the necessity for support for all of us, regardless of what is on our plate. My mother always told me, “we would take back our troubles if put on the table with others.” We know how to cope with them, have the instincts and proven capability.
Love you, Sweetie,
Ellyn
Everyone has “stuff” in their lives. Knowing how to handle ones own “stuff” can be depressing, lonely and lost in how to handle life. So everyone should listen to the experts and use some of their ideas as a start….thank you always for the insight….
Joan, thank you for reading, and I know you have had more than your share of “stuff!” My mother always said we would take back our troubles if put on the table with other people’s troubles.” We have the coping skills, and you have more skills than most! Love you!
I am so glad that I found you online. Being diagnosed so early in life and so long ago, there were no support groups in person let alone online. Until I met a friend of my mom’s who was in my mind the only other person with Crohns. It helped a lot to be able to relate to someone. I live alone and have for most of my adult life. I haven’t had a partner in several years which was before I had an Ostomy. And we were only together for a few years. My mom was pretty supportive, but as she aged, she needed my support instead of the other way around. She passed away in December of 2020 due to a blood clot and throughout these past seven months my two other siblings and I are in a inheritance battle with our youngest sister who took it all. We had to hire lawyers and so far we have paid out close to $11,000 which we split 3 ways. One of my siblings is very comfortable financially and has a daughter and son that look in on her daily, and my other sibling has his wife for support as well as his two sons and financially they are doing fine. My financial situation along with the stress of this legal battle has taken a toll on me and even though I am paying my part, I worry a lot about it. This in turn causes stress physically as well as emotionally for me. I have a therapist (who doesn’t, right?), but it would be nice to have a “go to” person. I have friends, but they have their own issues especially over this past year and a half with the pandemic. I am so glad to have my “ostomates” now, but I wish we could gather more often. Is that a possibility? Or maybe just a couple of us could gather more often. I know that most of our ostomates through this support are back East. I live in Washington State in a little town on the Olympic Peninsula and I haven’t found anyone here so far. Anyway, I have rambled on for too long, and please let me know what your thoughts are. Thanks!
I believe it’s not what happens to you ,it’s how you cope with it …. Any little tricks that get you through the fears , doubts and dark moments are worth sharing …. We all need support and help …. That’s life !
Comfort, reassurance, guidance, inspiration are all gifts you give us ,Ellyn. They all come forth through
your extraordinary book and outstanding blogs. What a special friend and resource you are. Sending love and thanks, Rita