Advocating

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.

Almost Heaven

No where have I every said my age. I haven’t found anyone with Cowden’s older than me. Here are some clues.

My 40th class reunion is at the end of September. I went to the class 50th birthday party. That was more than enough for me. Both of my children are over 30 and no I’m not a grandma. Our class motto was Almost Heaven Class of 77.  After high school I passed the physical and joined the Navy. After boot camp I was stationed in San Diego. I was a Navy cook at the Officers Club. Still make a good omelet.

My point with all my health issues I have a good life and I’m still here.

 

Why not just get rid of it?

Its been suggested that because of my high rick for cancer just get rid of it. Your know have surgery, take it out. Everything will be better without the risk right.

No, I have Pulmonary Hypertension. Pulmonary Hypertension is high blood pressure of the lungs. Take a look at http://www.SometimesItsPH.org

The site give a good definition of PH. I have many of the symptoms. Anyone can be diagnosed of PH. About half the people I met at the last convention are on oxygen. I have many PH symptoms but so far am not on oxygen.

I had complications with being put to sleep for surgery because of PH. My doctors have said its better for me to avoid surgery when possible. So I am not a candidate for any cancer prevention surgery.

I was diagnosed with pulmonary hypertension the same time I was diagnosed with right side heart failure. But thats another post.

A couple of sites

SometimesItsPH.org

PHAssociation

AmericanHeartAssociation

Check out heart failure on the American Heart Association site.

Everything is connected.

Everything is connected whether we realize it or not.

Last Friday I woke up at 4:18  in terrible  stomach pain. I was having bathroom problems. When I was able to go there was lots of pain and blood.

This went on fro a while. I kept thinking if I could make till 8 a.m. That way I would get a doctor’s appointment. Save the deductible

and not wait most of the morning in the emergency room. The more I waited the better I felt. So I got an afternoon appointment.

It wasn’t with my doctor by I head an appointment right before the weekend.

This doctor was not good with first impressions. He introduces himself, shakes hands and sits by the computer.

Before asking any questions the doctor raises a leg and passes gas. Then the appointment continues.

He ended up being really going at his job. He asked the right questions. I found out parathyroids problems can cause kidney  stones.

So I either had a urnatary tract infection or passed a kidney stone. The doctor said the only way to be sure about the kidney stone

would have been to come in right in the middle of the pain. Hopefully I will not have to use that information.

This morning I had a follow-up appointment with my endo doctor. The follow-up was for a high parathyroids and a low vitamin D.

Now my parathyroids had went down but not has much has he wanted it too. I get to stop taking the vitamin D. The levels are good,

and taking too much vitamin D can cause kidney stones. There is a possibility I could have a growth on the parathyroids.

So more blood tests and a kidney ultra sound.

We don’t need growths on anything anymore in the neck. Time will tell.

Colonoscopy was good, only 20 polyps this time. Last year was 27. My CEA level is 5.5  CEA is a blood test for colon cancer markers.

Mine has been and continues to be stable. Dave and I are attending the PHA International conference at Indy in June.

So things are good.

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.

Way to many times

Television

Television (Photo credit: paul.kenjerski)

A combination of things moved me to blog this. I liked hopeforheather.wordpress last post. Check it out, very good read.

My mother was a nurse. My brother, sister and I grew up hearing all kinds of stories she told about work. She use to stress Always wash your feet before going to the GYN, and

I am  late and need help finding my nursing scissors.

Hospital admissions or procedures way to many time.

If I don’t try and laugh Dave gets upset. So thats my why I try and laugh about this, And….

It doesn’t matter what you call it I have spent way to much time in a hospital. My vascular surgeon asked us to use her first name.

At that time she had done procedures for three years. I get colonoscopies every year and know my GI doctors schedule. Doing the prep on Sunday works best for me.

I like a Monday scope. If I’m real lucky I get to go first. Last year I was last and had to wait.

Dave and I have done it so many times, Its kind of sad. Everything from what to wear to the hospital, too I take my shower while Dave heats breakfast.

He has a hard time eating in front of me. Cleveland Clinic has two places you can be assigned to check into for a procedure. We like one better than the other.

My family says they are kept better informed at one place.

I like one place because the team that’s puts you to sleep is not intimidated with all of my health issues.

That area seems to be less of a wait. After you have changed clothes, IV is in, family gets to come back for a while.

Sometimes getting the IV in is a problem. I know the first name of the nurse who does the hard sticks.

Then they come for you.

Family says good-bye, and you are taken to holding area number one. (That is  what I call ).

Who knows how long you will be in holding area number one. If you are luck there is a TV.

Now the TV is for the entire room. I can see very little without my glasses, so I get to hear the TV. If its your lucky day they call your name quickly.

Heaven help you if you need to use the bathroom. Your IV ( usually not on wheels) has to go to. I can’t see two feet in front of me, and all you have on is hospital pjs.

The trick is to make it to the bathroom and to your bed with our flashing anyone.

There can be a second holding area. But that usually goes fast. The nurses talk while they wheel you in the room and get everything in place.

There is always talk about how I am getting put to sleep. My last hospital stay the breast biopsy I  was very surprised.

After everything is finished and I am awake is a blog for another day.

2014

Mustard

Mustard (Photo credit: Mr Noded)

My list of what I hope to accomplish in 2014.

1. Have fun on vacation.

I was in the hospital twice this year. That’s  not the same thing.

Dave and I went to a couple of Cleveland Indians games.

We saw Wicked in December.

So it’s not have any fun.

2. Feel good enough to exercise again.

We live next door to our local recreation center. I do walk the dog when the weather is good. So yes I do exercise just not like I use to.

This year I will get a bathing suit and attempt to go swimming. I still have neuropathy in my feet from chemo.

3. Appreciated the time in between doctors appointments.

Right now I do not have a doctor’s appointment in January. Colonoscopy is due in May. See the Lung doctor in February, skin doctor in Feb. You know the drill.

4. Continue cooking new things.

Last week we tried Crunchy Chicken Fingers on  page 114 of the current Weight Watchers magazine. It was really cook, quick easy and leftovers taste cook too.

Looking forward to trying Mini-meat loaf Parmigiana on page 114 of Weight Watchers current magazine.

5. Make sure I have two pictures ready for the art league display at the library. I just put away my Christmas pastels.

I think I over did it on a dog picture. I have to start somewhere.

You know the drill it never ends.

6. Continue to advocate in my own way. Last March I wrote a letter to our local free paper about colonoscopies.

The paper didn’t print my letter. We had major issues with our school board as the top breaking news. The school board problems continue.

But I will send my letter again. I have wanted to do Call on Congress in March to advocate for colon rectal cancer. Last year I was in the hospital.

7. I hope this is the year I meet someone in person with Cowden’s Syndrome. It would be great to have lunch and talk face to face with someone who understands.

A couple of years a go I attended a colon rectal  hereditary cancer educational event. The speakers were informative and educational.

I met other young cancer survivors whose cancer is hereditary, but know one with Cowden’s Syndrome.

One of the give aways was a blue ball cap with green lettering, Cleveland Clinic logo colors. Dave still wears his. Mine did not fit. HA!

8. I have become the family picture taker. I look for different, not posed photos. Hopefully my pictures will continue to get better.

9. Be thankful in everything big  or small.  I am going to miss the snow on the blog. Thanks for everyone reading this.