I attempted to submit something to a website. My return email was very positive loaded with questions I was supposed to answer so what I submitted could be posted.
Having Cowden’s Syndrome means I have a mutated P ten gene.
Most people I have met on-line have some kind of thyroid issues. A good many of them have had thyroid cancer. Thyroid issues I have them too.
They started at 17.Thyroid issues came back after having kids. My parathyroids issues returned this October.
I was born with a large head and have struggled with dyslexia my whole life. I continue to be thankful for GPS.
My large AVM is apart of Cowden’s.
The AVM is large and continues to grow. Its painful everyday. The pain has gotten to the point that I asked my doctor for something stronger than aspirin that is not addictive.
My family will tell you I am known to be able to deal with pain pretty well. So when I ask for something stronger means they are getting worse?
All this does not include the issues that I have because I had other issues.
Example: This past October I had a breast biopsy because the radiation I had eleven years ago caused a rash under my breast. Doctors wanted to make sure the cancer had not returned.
To this day the chemo I had for colon cancer in 2009 caused me to not be able to feel the bottom of my feet.
But I am really close to the five-year mark. But I am still here. This doesn’t include right side heart failure or pulmonary hypertension.
This site told me I wrote to the wrong place. They thought I should have written the colon cancer alliance.
Now I know all about them. Good site great people.
Awhile back I applied for SSI. After six months of calls,filling out forms, a doctors visit, echo and a night in the hospital.
I was accepted for SSI on the first try without a lawyer. So after finally finding a great job I really liked and was good at I couldn’t work anymore.
Oh and by the way I was 52.
Yes that’s one way Cowden’s syndrome affects me everyday.
Some days are good. Other days are not so good. I have a lot am thankful for. Most days I go with Dave and Daisy for the afternoon walk.
My cooking has improved. We eat a whole lot healthier, kept the weight off we lost and still look pretty good.
Some Cowden friends convinced me I had a story to tell and needed to start my own blog. Hopefully I have helped someone.
When I asked I give blood for any researcher that crosses my path.
I have gotten back into my art and see some improvement in my paintings.
So I guess I didn’t answer the question right. AND I have a good life.
Please check out the related articles from my on line peeps.
- “Probably” (beatingcowdens.com)
- Give it more time. (3littlebirds06.wordpress.com)
- Reschedule. AGAIN? (hopeforheather.wordpress.com)