THE COST TO ME

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Bill
THE COST TO ME.


I want to know the cost to me
having to have an ostomy.
This isn’t just financial cost
but all the things I must have lost.


The money’s not so wrong I guess
if you are on the NHS.
For then you get your stuff for free
at least that’s how it is for me.


But when you’re in the USA
then by jove you have to pay.
With many other countries too
the cost can be quite high for you.


It might be worthwhile to compare
all the costs both here and there
and help those folks in the UK
to understand that they’re okay.


If I were there instead of here
Then what’s the cost of all that gear.
I looked upon the internet
to see what costings I could get.


But I found out that it would be
far too many pounds for me.
So I don’t know how people cope
if I’d their costs I’d lose all hope.


I think that it feels bad enough
with real sad loss of personal stuff.
Some will have an interest in
the fact I’ve lost some intestine.


But they don’t have affinity
with my great loss of dignity.
Or the loss of confidence
I suffer as a consequence.


B. Withers 2013

Rosiesmom

Great poem and mostly true, however why have you lost confidence and dignity. You are not branded and hey colonoscopies are more dignified, at least your nether regions are not on display. Just a thought.

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kattgentry

I just joined so new to this. I have an ostomy and lost my insurance and very few supplies on hand. Can anyone tell me if there is a place for persons without insurance and on limited income to get ostomy supplies?

kattgentry

Regarding the last post, I lost my insurance and I am running out of ostomy supplies. I can be contacted at kattgentry@yahoo.com or 4053058195.

Bill
Hello Rosiesmom. Thanks for your comments. It's good for me to have feedback on this type of thing. You are of course absolutely right to question why there might be a loss of dignity and confidence.I question this myself when these type of thoughts come creeping in. However, sometimes there seems to be something uniquely spontaneous about negativity that will suddenly take over from rational thinking and gives rise to the sort of concept I have tried to capture in the verse. Many of my rhymes end up with at least one verse at the end that indicates how I have resolved this type of negative thinking. In this case the more positive ending was omitted (largely because I try to restrict myself to eight verse per concept) so you are quite right to question the ending and to add your own positivity.Here are some examples of endings from other poems on 'negativity' that try to counteract the darker concepts. So put away the the minus sign -- and let the plusses all be mine --- I never want to to see again - those negatives and all their pain. or Don't let the negatives destroy -- this one life that you could enjoy. -- Find a joke and have a laugh -- so fun can be your epitaph. or Grasping the nettle and its sting -- can get you almost anything. When you embark on something new -- in many ways it can help you. The point to be made about the rational/positive thinking is that it often 'follows' the negatives as a sort of neutralising and counter-balancing phenomenon. My rhyming verse tries to capture the raw emotion that is the often motivation for concentrating on the subject as a suitable poetic concept. Obviously when the written verses finish on a negative, I (and hopefully the reader) will try to do that counter-balancing act in some other way. Anyway, it is very pleasing to know that you have read it and come up with your own ending. Best wishes Bill
 
Stories of Living Life to the Fullest from Ostomy Advocates I Hollister
Bill
Hello katgentry. Thank you for your posts. I'm sorry I cannot help you personally with your question but hopefully someone else reading this will contact you with information that may be helpful. IT might be a good idea to either blog the question separately or put the question into the forum to gain a wider audience and perhaps obtain some more helpful replies. Fortunately, I live in the UK and the NHS pay for all these types of supplies. In yet another verse I have tried to capture my gratitude for not having to worry about finding the money to pay for all the stuff we need and I feel for all those who do not have this facility are not able to afford the supplies. I do hope that someone will be able to point you in the right direction in order to resolve your supply issue. Best wishes Bill
mild_mannered_super_hero

Kattgentry, check your inbox. I might be able to help you with a few extras.

Past Member

Cannabis oil was indeed wonderful and very effective in treating cancer. If not for the government and their so-called rules in regulating cannabis, my wife would have still been alive. Thanks to the newly policy for legalizing cannabis, else I would have still lost my daughter to kidney cancer. I was really touched and surprised when I watched lots of documentaries on how cannabis oil had helped a lot of people whom their family members never thought they could make it after undergoing several "Chemo". From the depth of my heart, I must say a word of appreciation to Dr. Thomas Fandez for the timely intervention in the life of my daughter suffering from kidney cancer. As I am writing this testimony on this blog, my daughter is so strong and healthy despite not having completed the total dosage. For your cannabis and medical consultation, try and get in touch with him on his email: dr.thomasfendazhelp@dr.com. He can help and enlighten you more. Thanks, good luck.

Bill
Hello joekimbell.Thanks for your post. I have known lots of people over many years who have taken cannabis and appear to have gained a great deal from it. I have also known a few where it seems to have had an adverse effect on their mental health. These adverse effects seem to have been exaggerated beyond reason by the medical and legal professions probably because it benefits them in some way to view it negatively. I suspect this negativity has a lot to do with who is profiteering from the sales of such drugs. The 'establishment' do not seem overly keen on explaining or taking responsibility for the damage done (what they like to call 'side-effects')by the drugs they 'peddle'. Good luck with whatever you decide to use to help overcome the hurdles of life.Best wishes Bill
Redondo

I have not lost my confidence but I have gained it. Instead of worrying that I was not going to find a bathroom in time to go, I have gained my confidence not worrying about it. The biggest thing that I have gained from an ostomy is my life:)

For several years, before my ostomy, I spent most of my days in the bathroom and in the hospital. For the last 40+ years, I have enjoyed a full life with my ostomy.

I hope you can find a way to enjoy your life with an ostomy too.

Ival

Like Redondo, I lost to a debilitating disease and gained confidence and dignity. My ileostomy has given me an additional 37 years of a disease-free life that I would not have had otherwise. It is a mind game that unfortunately can be misdirected by incorrect information.

Bill
Hello Redondo Ival. Thank you both for your posts which are both interesting and inspirational. I feel it is very important on a site like this to hear how people cope and share with us the ways that they have benefitted from having an ostomy. Reading about stories like yours provides a counterbalance to the negativity and lack of confidence felt by others. In the rhyming verses I tend to try to capture those 'emotional' aspects of life which need to be expressed most- in order to get them out of my system so that I can live more comfortably with what is left when the negativity is dissipated in this way. The feelings and experiences that I am left with are very often supportive, comforting and leave me with a sort of contentment that my 'lot' is not as bad as I first envisaged. These feelings of contentment do not engender those strong emotions that lend themselves to rhyming verse at the same strengths as the feelings of negativity. Thus it is down to people like yourselves to share your experiences and help to lift our spirits in times of need.This process does indeed involve 'mind-games' and I for one am very grateful when people respond to my verses in such a helpful and positive way as you both have done. Thanks again! Best wishes Bill.
Ival

Thanks for taking the initiative to be creative and stimulate our minds. Wishing you the best. Ival

Immarsh

Hi Bill, many thanks for the poem...despite the negative ending. I do like all the positives you put in the post to Rosiesmom. Everyone has their ups and downs....and if it's the negative that's in your mind, it's good to express it in a productive way. I have had my ostomy for more than 50 years, and I had some difficult times in the beginning. But life with an ostomy was so much better than the alternatives (disease or death), that it's my badge of survival, and I think I'm a better person for it. However, I met a young gal (also 16) who was going through the same thing I was....only in a different state. We were pen pals for a year before we met.... Although we became fast friends, we have traveled different emotional paths. She is the same angry, bitter, negative person she was when I first met her, despite the fact that she was beautiful, active, trained rode horses on her family farm..and had a loving family as well. We live near each other today, 50 years later, and she still has a difficult time seeing any positives in her life (like just being alive). As I taught my kids (who both have IBD), there has to be a balance....everything can't be bad....but one has to really be creative to look for and identify the good. Keep writing...you have a gift to share. Best regards, Marsha

Bill
Hello Marsha. it's good to hear from you and thanks for your post and positive comments. It is as you say - different people take different emotional paths and you are fortunate to have found a route involving and including some positivity. Those who are not so fortunate and find themselves on a negative trajectory not only suffer with the physical condition but are often trapped within their own negativity. This can also lead to social isolation and loneliness as other people have difficulties coping with negativity that they cannot 'cure'. Most of my rhyming verse over the years has tried to capture that feeling of helplessness and hopelessness that people have expressed when they are in the depths of despair whilst experiencing things that they feel they can do nothing more to change. Even those people who care most about the person suffering in this way are relatively impotent to assist the person to be more emotionally positive. Indeed sometimes it emerges that the more they try to help, the more that individual withdraws from their efforts and becomes more inward and isolated. My poetic efforts have been to listen hard to what they have to say and try to capture both the words and the meaning into rhyme. In essence this becomes a simple non-judgemental 'recording' of what they have said which 'proves' that someone has listened to them and has taken an interest from 'their' point of view. An artistic analogy could be that of the painting 'The Scream'. Not a pretty picture but one that captures a sentiment that most people can identify with even if they do not wish to experience it first- hand for themselves. This type of rhyming verse does not tend to attract a huge following as it can be almost as depressing to read as experiencing the condition is for the people who were suffering in the first place. However, I have found that it is hugely appreciated by the individuals for whom it was originally written so I feel compelled to continue writing in this way even though sometimes the verses end up with an audience of just one. (apart from me!) I felt that it was possible that the verses written about ostomies might be appropriate to share with a wider audience of people who understand more fully some of the negativity that this condition produces. It often surprises me that so many people actually read the blogs and take the time to make positive comments such as your own. I am so grateful for this type of feedback as it helps me to justify the time taken to produce the rhymes.Best wishes Bill ( stay positive!)