Blogging, should I continue????

Christmas in the post-War United States

Christmas in the post-War United States (Photo credit: Wikipedia)

Merry Christmas! For the next couple of days its going to be very stressful around here.

Thank you for taking the time to read this. I have been evaluating blogging. Do I need to take a break? Am I any good?

Do I have anything that persons want to hear? For a long time I didn’t care about the numbers. I use to thing if you write it they will come.

Now I’m not so sure.

I have been blogging for about a year and my stats are really low. Maybe I don’t know how to promote myself.

Any suggestions would help. My last two post were pictures I painted.

I drew my husbands lunch and my sisters mailbox. They received more hits than I have gotten in a while. So maybe I need to blog in a different direction.

One of my new followers say know your audience. Could my audience be trying to tell me something? I posted my first picture because I was surprised that my art teacher liked it.

I have been inspired by a fellow artist I follow. She draws anything. I think Im getting better.

True this blog has kept my family informed about my health. Last Thursday the heart doctor say if he was a betting man he would have bet I wouldn’t be around now.

So I am beating the odds.

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14 Comments

  1. Please do not be discouraged. It is so important that people’s experience of Cowden’s is shared to raise awareness of the syndrome. You are doing a great job. Instead of blogging, I have tried to share information about CS via Pinterest (http://www.pinterest.com/emmeili/). If we can spread knowledge so that people can recognise the signs of the syndrome and be aware of the cancer risks, then I think we are doing something worthwhile.

      • I’d be more than happy to be added to the links on your blog. I created the Cowden’s boards on Pinterest to raise awareness of the visible signs of the syndrome and illustrate the many ways in which Cowden’s presents and progresses. All the other boards on my site are there to draw people to the Cowden’s boards – it has been very hard work setting them all up – but, I hope people will be curious and have a look and, if I am lucky, pin something from one of the boards and spread knowledge about Cowden’s.

        Given the associated high lifetime risk of a woman with Cowden’s developing breast cancer, it is my hope that one day all medical staff who work in breast clinics have knowledge of the syndrome and are able to recognise the visible signs. From my experience, few doctors – even those at consultant level – have ever heard of the condition, and some have intimated they feel it not worth the time finding out about the syndrome as they perceive they will never see a patient with this ‘rare’ condition.

        The situation reminds me of when, many years ago, I use to have conversations with teachers about dyslexia. Many of the teachers were adamant that they had never come across a student with dyslexia. When we went through the signs and symptoms, you could see ‘light bulb’ moments when they realised the number of students they had taught who met the criteria but were left to struggle as the signs were not recognised. The consequences of not diagnosing dyslexia early in childhood can be profound and adversely affect self-esteem, and mental health; I have spent many years working with people whose dyslexia was diagnosed very late and seen the effects first-hand.

        I cannot comprehend how some doctors do not consider it worthwhile to become familiar with visible signs which can help them diagnose a cancer predisposition syndrome, given the potentially catastrophic outcome for missing a diagnosis. It is said that Cowden’s affects about 1 person in 200,000, but if doctors are unable to pick up on the visible signs of the syndrome, then who knows what the true incidence is. How much does lack of knowledge about the diagnostic signs of Cowden’s contribute to the perception of ‘rarity’?

        About twenty years prior to being diagnosed with breast cancer, I developed some of the visible skin signs associated with Cowden’s on my hands and feet, and these were mis-diagnosed as warts. I certainly wish that the doctors I had been consulting for my long history of benign breast problems had educated themselves about all syndromes associated with a heightened risk of breast cancer.

        If the signs of Cowden’s had been noticed in me, I would have had options to have reduced my breast cancer risk. Unfortunately, I went on to develop a grade 3 malignant breast tumour and then pre-cancer of the uterus – I should have a thyroidectomy, as I have a multi-nodular goitre, but have opted for a ‘watch and wait’ approach.
        Living with Cowden’s is far from easy as an excerpt from a post on the blog Sportytwinmom: My Life with Cowden’s Syndrome illustrates:

        My awesome genetic counselor thought it was time for a visit after I had a long discussion with her over feeling tired even
        exasperated trying to manage my Cowden Syndrome. I shared that I was tired of defending myself and symptoms to some
        Physician’s who stare blankly at me with no response and seemingly no interest in helping me.
        (http://sportytwinmom.wordpress.com/)

        I think many of us have had this experience; not only do we have to deal with the health difficulties the syndrome brings, but also the responsibility and stress of negotiating an often roller-coaster journey in the health system.

        To raise awareness of Cowden’s, we need to carry on doing as much as we can – in our various ways – to collectively spread knowledge of this condition. Hopefully, we can all contribute to ensuring people are diagnosed early and offered the opportunity of screening and/or prophylactic surgery to minimise the chance of developing an untreatable cancer.

      • Thank you! This comment would make a good guest blog. I have been on Pinterest once. So do you have to be invited to join? THank you for all of your comments. I can relate to all of them. My current thyroid doctor is the partner of my old thyroid doctor I had went to for years. I mentioned being tested for Cowdens. He didn’t want to hear about that. He had heard about Cowdens in medical school, was interested in a machine I was hooked up to for an antibiotic.

      • To join Pinterest you need to sign up with an email address and create a password. You can then set up your own boards and pin to them. There are public, secret and group boards available on Pinterest. To pin to a group board you usually have to be invited; however, some pinners just ask you to email them if you want to access and pin to their board.

  2. Are you looking to write for yourself to help process things? Or are you looking for readers? I write to help myself deal with Cowden’s Syndrome and LDD. It depends on what your purpose is. I say PLEASE DON’T STOP…there are too few of us on Social Media who have rare diseases and our voices need to be out there. But, I respect your decision whatever you decide.

    If you’re looking to get more stats, the tags you use/Wordpress suggests hopefully brings more readers to each post. 🙂

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