Update

Anyone who reads this blog knows part of my Cowden’s syndrome is a very large AVM. The AVM started in my pelvis area.

It has gotten very big over the years. For a long time I was able to get the arteries worked on . My surgeon is no longer able to do anything for me.

She gave me prescriptions and referred me to pain management appointment is May 1. Who knows what they will attempt or if it will work.

Lately I have attempted to put more effort in doing things that make me feel better.

Right now I attempt to stay ahead of the pain with my current meds. I also spend as little time at the chair on the computer.

Who knows what it is about that chair but it is painful to sit in it and painful to get up. Most of the time my left leg is numb before I finish.

I also see the oncologist the beginning of May. He should go over the scan results again. It depends on when you start counting but I am really close

to the five-year mark with no recurrence.

We are hoping to get the scholarship to attend the PH Association at Indy the end of June. They pick the last applications at the end of the month.

George W Bush and I have the same style of painting. I send him an email of my prize winning dog picture and got an answer back today.

If anyone is interred Google George Bush paintings. He is currently having a one man show at his library.

I also have my colonoscopy coming up. Last week I bought the prep, hid it in the pantry and am attempting to forget.

True to form I am having symptoms again. This happens every year right before the scope.

I say a u tube video about different things to do while prepping . One suggestion was to paint your toes.

I can’t remember the last time I did that. So along with buying the jello, pop cycles and broth I plan on getting some nail polish.

Some of the over ideas sound a little to young for me. But who knows!

First PH Support Group

Saturday I went to a brand new support group for pulmonary hypertension.

It was a first for me. I gave Dave the opportunity to do something els but he went. The meeting was held at a library about 25 minutes away.

The leader said the PH Association had sent out 200 hundred invitations. Two patients and two caregivers showed. up.

I had a good time, learned some things about PH. The support meeting are going to be every other month.

She wants to have a walkathon. G talked about practical issues we face everyday. She said if the hospital doesn’t know what PH is to leave.

I asked about nurses who have asked me if I use oxygen at home. Now I don’t have oxygen with me when I check in to their floor.

So know I don’t use oxygen at home. I use to think what an odd question, never thinking they just didn’t know.

The leader talked about the upcoming PH conference.

They have conferences every two years. This on is in Indianapolis Indiana. She had went to the last conference.

They have everything from support group meetings, fashion show,

a breakfast with a doctor all you do is sit at the table with the topic you want more information about.

She showed us her tiny medicine pump. I was amazed at how small it is. You would never know she was wearing the pump.

If you have ever had a pump let me tell you its a big deal.

We still have time to sign up and go to the conference. So hopefully I will get to go.

Google PH association and check out the conference. Maybe I’ll see you there.

New opportunities, Looking forward to More!

Global Genes has a contest.   It’ s more of a challenge, use six words to  describe your illness.

Its taken me a while to come up with something to submit.  It started out has big pain in the butt. That was describing my Avm.

AVM’s are part of Cowden’s Syndrome. My AVM is very large, started in the left hip area. After all these years and all the procedures I still have lots of pain.

I submitted New opportunities, Looking forward to More.

It fits the positive me. Not the me at the end of the day in pain.  I have had many new opportunities. I started doing my art again.

Yes I’m still learning. But I am getting better. Through art I have met some really nice people. The art league had a demonstration given

by a gentleman that I have two of his pictures hanging in my house. Afterward I got to talk with him. The library exhibit was a good learning experience.

It was my first time to  gallery sit. It talked to lots of different people, encouraged some preteen interested in art and made sure people voted for best in show.

I have met lots of different  people on-line.

There blogs are encouraging and I have learned many things. Lately I have learned so much about PAH.

Next Sunday I am attending a brand new PH support group. I have never been to any PH support group.

March was Colon Rectal Awareness month. I was part of a Rare Disease Day video. If you haven’t seen it yet, its on the P Ten Facebook page.

Who knows what new opportunities I will have.