For a long time I have wanted to do some advocating. Affordable Healthcare is something I am very interested in.

Early on I sent tweets and emails to my congress representatives. I got form letter replies. That was discouraging. The Pulmonary Hypertension suggested to invite someone from DC to speak at the support group I have been to twice. Plans are in the works for that to happen this time next year.

The pulmonary hypertension association along with NORD have advocacy suggestions on their websites.  PH Association asked for emails they could take directly to the senators.  I appreciate knowing Senator Portman got that one. My concern is what type of affordable healthcare will there be when my husband retires. All of my health issues make me a preexisting condition. This year makes me a three-time cancer survivor.

I even tweeted President Trump. The next day I was blocked by President Trump. It took me a long time to figure out how to vote. Toward the end of the campaign Trump asked the people of Ohio to vote for me what do you have to lose? Last week I had an answer. I reminded Mr Trump of his tweet and answered I would lose affordable healthcare.

Now I’m not a mean hateful person. Im someone who was raised to be polite. Every day we hear about his tweets. All I did was answer one that bothered me for a long time and I was blocked.

At least I know someone read that one.

My hope is to figure out whats next in my advocating. I would like to attempt something small for rare disease day. Who knows.


You Can not go if you do not try!

Around here its really big news Lebron James is back. By back he means back home in Akron.

The city of Akron is having a welcome home party for Lebron. Tickets are free, but you have to be lucky enough to get some on-line.

They were giving out free tickets Monday morning on the internet. You could get up to six free tickets.

I tried NO LUCK.

Tonight they are giving more tickets away. I’ll be there attempting again. Praying real hard what ever tickets I am offered are not to high.

The Lebron party is at the brand new college stadium. Dave is afraid of heights. But I like trying.

Art Show Pictures

For about a year now I have been slowly getting back into art. This past September I joined the county art league.

Every year the art league has the Aquarius Exhibition. Each member can show two paintings. The show is at the main branch of our local library.

I had not been in an art show since high school.

Last weekend was the reception for the Aquarius Exhibition.

This weekend we took the camera back to the library.

Martha hanging in the exhibit

Martha hanging in the exhibit

After lots of thought we framed the dog pictures. Martha was Dave’s sheepdog. She ruled the house and my kids loved her.

Martha was 17 when she passed. Even has she lost her sight she still had her spunk.

Daisy is our dog. She is a boxer mix rescued from the local shelter.

The back side of our house has big windows. Daisy loves to watch for all the animals that make it to our back yard.

Yes I  won Best in Show!!! Still in shock. This is a pastel. I used my Christmas present, softer pastels  to finish it.

The judge said it spoke to her.

Watching for Critters

Watching for Critters

The Aquarius  Exhibition will be up the month of February.

Once Upon a Time

Hope its in the Genes

Hope its in the Genes

Once upon a time there was a conference on Cowden’s Syndrome.

This is your typical conference. Health care professionals come to get more knowledge and understanding of Cowden’s Syndrome.

Persons with Cowden’s Syndrome come to give health care professionals an understanding of what living with Cowden’s is about.

The conference was held in Nashville Tennessee on a weekend. That way my daughter can attend the conference, see her mom and learn about Cowden’s.

Everyone with CS I have met online would be about to attend. During the weekend we would attempt to have coffee and talk.

THe conference would have speakers with knowledge in breast, colon, kidney, skin, thyroid cancer.

Dr. E and J will update the group on research being done.  Persons with CS are able to talk to the group. Hopefully this gives the medical community

a better understanding of what its like to life with CS.

Attendees would be able to pick what speakers they heard, ask questions.

The conference would have an area for those 18 and under.

They  discuss  youth issues ex. what its like to miss school for doctors appointments.

Everyone makes a video for U tube about Cowdens. The video would go viral and be shown at the Super Bowl.

Come Monday morning people across the country are talking about CS.

The last night has great country music, dancing and good food. A vote is taken about the color for CS.

Plans are all ready in the works for a conference in Cleveland.

Everyone leaves hopeful.

Hopeful the next doctor they see has heard of CS. Hopeful because they met someone who understand what they are going through.

Hopeful about research being done and someday cancer will be a thing of the past.

 Why post this?  I am hopeful.This is fiction. But things are getting better.