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.

 

2017

2017 started with doctors appointments. I had my six month appointment with the dermatologist. He is one of my favorites doctors. The staff is very nice. Doctor knows what he is doing. They are always on time. He has become the family skin doctor.

Two Monday’s ago I saw him.  Everything was ok till he got to my right cheek. He thought it possible could be a pre cancer or possible basal cell cancer. I needed a biopsy. I’m no stranger to biopsies. The doctor is good at them. If I have basal cell cancer this would be my third cancer.

So he finishes. The answer to all my questions is “We’ll be in touch” I wait till the following Monday,  call the office back. Tuesday morning a nurse calls. Doctor talked to the pathologist. Report is he’s not sure. Doctor wants to see. Saw doctor Friday afternoon. He did another biopsy on the same site says results should be back by Wednesday at the latest. Thinks he got everything this time.  Depending on the results I might need to see another doctor for further treatment.

I know with PTEN skin cancer  I am at a higher risk for skin cancer. Every year I buy sun block but forget to use it. With my large head size I have one ball cap that fits.

Treatment for pimples in my teens included time under a sun lamp and night cream that smelled like sulfur.

This summer I will use sun block not just buy it. Hopefully there is somewhere out there that has cute wide brim hats for summer.

Most important my hope is my family, friends will make a point to use sunscreen with me.

Update

 

I just finished the snowman

img_1093I usually don’t make New Year’s Resolutions. My resolutions were mostly art related. Limit the number of exhibits I did. Be part of the Christmas exhibit in Marie’s Cafe on the square. I did both. I’m still membership chair of our local art league. Next year I would like to do more for pulmonary hypertension.

I have shortened my list of doctors by two. Said good-by to the GI doctor and my oncologist. GI doctor canceled my appointment. After talking to my PCP we decided she could take it from here. The oncologist has an ultrasound scheduled for March. After that if I need him I know where to find him. My thyroid is good enough to see him just once a year.

My PH is progressing. I am now on two PH medicines. The second one is inhaled. It comes from a specialist pharmacy in the mail and cost big bucks. We are very grateful for good insurance and Caring Voices. Caring Voices awarded me a grant for co-pays.

 

This I called Playhouse. Its made from junkmail. One of the shows I wanted to do was In The Pink. Small pictures are raffeled of for our local cancer center.

 

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My arteriouveous malformation continues to grow and give me problems. An arteriovenous malformation is arteries and veins grown together. It is no longer safe for me to have them operated on. Hopefully I won’t get another man cold and the new medicine will work.

Update

I just haven’t felt good in a while. Been having more heart palpitations. Losing weight without trying. We had a family wedding over Labor Day. Most people would gain some weight. I lost two pounds. The wedding was fun. Dave and I had a good time in Columbus. We did lots of walking. I looked good and didn’t break any bones. Our 17-year-old dog got sick from being boarded.

Early September, I had a pulmonary hypertension appointment. The last time I saw the doctor I did the 6 minute walk test and two breathing tests. The six-minute walk test is pretty easy. They hook you up to a watch type machine that measures your oxygen levels and you walk the hall for six minutes. Everyone stops for you. For the breathing tests they had you nose clips and walk you through the test. I hate the nose clips.

Both test showed less lung function. The doctor had to stop and think. It ends up he added another medicine. So after almost a month I am waiting for the speciality pharmacy to return my call. The insurance finally approved my Tyvaso. The next step is to learn how to use the medicine. Tyvaso is inhaled. Pulmonary hypertension medicine is known for side effects.  Add that to I need to have a couple of teeth pulled. All this has to be finished by the end of the year.

Yes I am still doing my art. Two of my picture are hanging locally. I contributed to In The Pink this year. A local store gives artist 6 by 6 canvas and then raffels the pictures. Money goes to a local cancer support center. I have been attempting to lessen the number of doctors I see.

Our Cleveland Indians are playoff bound.

 

What !!!!

The skin doctor is finishing up my appointment. He’s telling me the problem area looks great. I agree with him. Last thing I have one more spot I need checked. Silly me not a big deal, he’ll look and I get another appointment in six months.

What I think I heard him wrong. Your not sure what this is. Out comes the doctor tool, he gives a measurement to the assistant. You need a biopsy this needs to come off. Any vacation plans coming up? Do you swim? Well yes my reunion is this weekend. Ok lets schedule the biopsy after the reunion.

Dr shakes my hand and leaves. I get dressed and then think of the questions? Dr is in the hall. Yes you will have stitches for ten days and need to stay off the area. Right again after the numbing meds wear off the area will hurt. We start with scheduling my return appointment. The nurse tells me everyone who has not had skin cancer gets yearly appointments. He’s new. I ask about Cowdens Syndrome. He looks surprised and I get a six month return appointment for a skin check.

After all my questions are answered I get a biopsy for early August. The biopsy is on my bum. It looks to be a long ten days.