Sunday, May 4, 2014

Pulmonary Arterial Hypertension #worldphday

My  other blog has some more information
Scroll down to the beginning, for my story

Tomorrow, May 5 is World PH Day!! (PH= Pulmonary Hypertension)
here are some places to get additional information
Pulmonary Hypertension Association
Pulmonary Hypertension Association of Canada
Pulmonary Hypertension news
Creating Awareness of PH in South Africa

Monday, April 28, 2014

National Superhero Day #ytcHero

National Superhero Day  #ytcHero
April 28 2014
 Love this quote, but there are several variations.
"The object of lifes journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out, shouting, Holy Sh**, What a Ride!!!" — Mavis Leyrer, Seattle
""Life should NOT be a journey to the grave with the intention of
arriving safely in an attractive and well preserved body, but rather to
skid in sideways, Champagne in one hand - strawberries in the
other, body thoroughly used up, totally worn out and screaming
'Holy sh** - What a Ride!'" — Mavis Leyrer (octogenarian)

“Life should not be a journey to the grave with the intention of arriving safely in a pretty and well preserved body, but rather to skid in broadside in a cloud of smoke, thoroughly used up, totally worn out, and loudly proclaiming “Wow! What a Ride!’”
It was said by the man — Hunter S. Thompson 1966

“We've got some difficult days ahead. But it doesn't matter with me now. Because I've been to the mountaintop. And I don't mind. Like anybody, I would like to live a long life. Longevity has its place. But I'm not concerned about that now. I just want to do God's will.” ~Martin Luther King, Jr

My Superhero pose!!
A friend came to visit and took my for a ride on their bike. Had a Great time!!
Friends help make a difficult journey easier!!

love dek

Pulmonary Arterial Hypertension and Me

May 5 is #WORLDPHDAY .
To spread awareness, we were asked to post information, email or message news outlets our stories.
In Addition, we were asked that ::
Public service announcements (PSAs) focused on  Pediatric PH Research, Early Diagnosis, and the work of the PHA are being sent out to approximately 10,000 national radio and 4,000 television networks across the country on Friday 4/25 at 9am ET!
The spots are titled: “Pediatric PH Research,”
“Sometimes It’s PH,”
and “What Is PH?”
We need your help to get these PSA's from station managers’ fingertips and on the air! Contact your local news stations and ask that they broadcast these PSA spots.
My Doctor Mathier

My story, is RARE!! I was born with Multiple Congenital Anomalies, I have PAH, because of the heart and lung defects. I also have Hemi-vertbrae Scoliosis. I officially have had PAH since my Heart Catheterization when i was 10, in 1967. At that time my pressures were 90, normal is 25. In 2010, when they finally put me on Meds, the pressure was 160, dr said, that was one of the highest levels he has seen. My Meds come to my via a speciality pharmacy, UPS brings them monthly. Thankful to my #UPMC  Medicaid, they cover the $100 a pill, $6,000 a month bill.
Because of the heart, lung defects, and PAH, i never had energy, always getting out of breath, last to be choosen in games. The Meds help some. They are talking about adding a secondary drug, which runs about the same $$.
I have refused the lung transplant, don't feel that is for me. I spent a year flat on my back when I was 12, undergoing the Scoliosis -Halo-Femoral Traction.
I keep busy, make quilts, do Advocacy for Heart Defects and #PAH.
love diane

Friday, March 14, 2014

Diane and her Heart Defect Research Quilt

Hello, March 14, Friday.
Wednesday I sent off the quilt to the winner, Mary D. I am sure it is going to a good home. :(
Sniff Sniff, missing it.  :)
I had Ma take one last picture, so you could see what it looks like finished, and a rod in the Rod pocket. But she isn't use to the new fangled cameras and chopped my head half off.
She hasn't taken many pictures since the days of her Brownie.
Diane and the Heart Defect Research Quilt
I have already heard from both organizations, ( CHP's foundation, and UPMC's Development office, for CVI)  and as soon as the monies clear out from Go Fund Me's  We Pay account, i will send off checks to both groups. My $1020, when withdrawn, minus the fees, came to $930.78. Fees than were $89.22,   8.74%. Which is about what they have in the FAQ's.
THANK YOU all for the Support, Donations,  and Love !!
Who knows, if able, maybe I will do it again in 2 years. BUT forget about those 89 little pieces, something a bit easier.

Love Diane

Plus, Cash on hand, checks, I never added into the G F M, in case they took fees out on it too. $121.
$1051.78  total

Wednesday, March 5, 2014

Heart Defect Research Quilt Mar 5 2014

Hello, March 5, 2014
WOW!! When I started the Heart Defect Research Fund, I expected it would really be like a "raffle", 100 people might give $5 or $10. But for Family, and Friends to gift more, WOW!! I am truly Blessed!!
I am almost to the goal of $1,000, in under a month.
After someone told me, they withdrew some of their monies in their account, of the $400, the amount in the checking account only was $364. The funding source, admits to a 5% fee, plus 2.9 % and $ .30 processing fees, but it was in reality, more like 12% fee. I haven't inputted the Cash on hand, not sure if it would be charged fees also. So I am in reality over my goal amount.
I have emailed both places for information on gifting, and haven't heard back. :(
I need to resend those emails.

The Quilt is almost complete. I had issues with how the binding turned under, over the Rod Pocket, and ripped it out, and resewed it, But I have the hand sewing half done.

WA LA, Rod pocket sticking out on the top, and Binding all stitched on.
The Label I stitched out with the machine, I thought came out well.
I need to hand stitch down the binding and rod pocket.
label stitched out with machine
Love Diane

Wednesday, February 26, 2014

Heart Defect Research Quilt

Hello, Feb 26 2014
I think the  FEATHERED HEART APPLIQUE QUILT  is coming along very well. I finished the free-hand quilting, AND the Stitch in the ditch around the blocks. All that is left is the binding and the rod pocket. When there is a quilt show, it is usually required to have a 5" pocket in the back, for a way to hang the quilts. I don't think whoever wins this, will show it, so I am only going to put in a small pocket, for a thin rod, like a small wooden dowel rod.
After I hit the bottom with the Echo-stitching, I still had lots of room in the corners. Normally there would be stipple stitching in there, but my stipple stitching isn't very good. But then the Echo-stitching isn't so great either. As I go out from the center, my points and curved scallops got straighter and less loopy.
I did a small free- hand quilting practice run and told mom I was going to do that in the corners, around small hearts I was going to free-hand quilt. She said I shouldn't, Leave it be. BUT I did it any way. It came out pretty well. I only had to rip out one small part, when I messed up. That wasn't the first time, so no biggie.
So in the corners of the large big center block, I chalk marked around a small heart, stitched around it, plus 2 more times. Then I stitched off of it, and did some loops and did some heart loops. So look close at the free -hand stitching in the corners. I know, the lighting isn't very good, and the flash over exposing it.

Check out the corner where I did some hearts and heart loops.

After i took this, i finished the stitch in the ditch around each block.
I may still do a small satin stitched heart in the middle of each small heart applique, I haven't decided on that yet. Technically you are supposed to quilt to 5". This is from the old days when the batting would disintegrate, so you want stitching to keep it together, and in place.

Love ya diane

Wednesday, February 19, 2014

Heart Defect Research Quilt Feb 19 2014

Hello, Feb 19 2014
I worked hard on the Quilt today. I stitched around all of the 89 little pieces.
Sorry I took 4 pictures, 2 with the flash, and two without, none are really that good. I had hoped at least one would show the stitching a bit better.
Quilting around all the 89 little pieces
Maybe  if you click on it, and make it full size. It is AWESOME!!
The picture from the front, you can see the puffy ness around each piece.
Tomorrow and Friday I will work on the echo- stitching around the shape of the heart.
Heart Defect Research Quilt
Don't forget if you donate to my Heart Defect Research Fund, you have a chance on winning the quilt.

Thank You
love diane

Thursday, February 13, 2014

Hello, Feb 13 2014,
Heart Defect Awareness Week is almost finished. St Valentine's Day is tomorrow.
We were supposed to get our Groceries today, but the weather didn't cooperate.
So I spent the time working on the Quilt. First, I taped down the Backing, then the Batting, and then the Quilt top.
Then I Pin Basted the Quilt. You are supposed to PIN it about every 5" apart. But I was worried about holes showing in the center square.  I then had to move the other Pin Basted Quilt over to the pile of TO DO Items.
Monday I will start the Stitching of the layers together. Free-Hand Quilting.
Pin Basted
Sorry it wasn't the best shot. I couldn't lift the camera up any higher. ::)
Love ya
Don't forget if you donate to my Heart Defect Research fundraiser this can be yours.

Wednesday, February 12, 2014

Hello  Feb 12 2014
I posted this yesterday as a PS on the other days post.::
Well, the backing part today wasn't going  so well. Plan C. Pictures later. Pooped out.
This is who i will contact about the donation.

I ended up going with PLAN E. This is what I was going with yesterday, and it wasn't working. I guess, my mind was not functioning in QUILT mode. As I laid there this morning, UH HA, a Revelation came to me.

I was thinking, NOT Clearly, I would sew the 2 sections together, and then do a Diagonal in the middle. I got to that point, and was looking at the 4 seam allowances, and it was   NOT GOING TO WORK,  at least, not for me.
The quilt turned out a bit bigger than planned, 35 by 35.5, not 32.
The pieces I had, were either Fat quarters ( 18 by 22), Half yards ( 18 by 44) or full yards. The ones I had that were full yards, were the Joann Fabrics ones, and one that was mostly white with no hearts on it. The ones from Joann's, were a bit BUSY, but I had to use them. I also had one from Joann's that said, Faith, Hope, and Charity on it, I think it was a BC one. But at least it had hearts !! ( needed lots for the feathered heart, I didn't want the same pieces too close together)

The bigger ones I cut a 20 by 20 and the smaller one I cut 18 by 18, and, well, no good.
This morning, I took the large Moda Marbles Dark Hot Pink, it was barely 34 by 40. I only needed a little more. Yesterday, it got to the point, I DID NOT want to piece the backing, Especially down the center, and have it behind the large Feathered heart. Or only add a small 3" piece onto one side, and look lopsided. SO  I cut 3 -2.5 " strips to use in the border, off of the Hot Pink. Then got JACK ( the ripper) and took apart the seams on half of the above. Chopped off 2- 5" strips and sewed those to each side of the large Hot Pink, now about 28 by 37.

Backing of the quilt !!

WHEW!! By then it was 1pm, ( Home alone) and pooped.
Nappy time, tomorrow or the next day, I will work on pinning the layers together.

Love DEK

Monday, February 10, 2014

Hello   Feb 10 2014
Well the Heart Defect Quilt Fundraiser is going slow. I did complete the quilt top. Rather then go up to the quilt store, AGAIN, i used as the sashing, the fabrics that I had. It is a little busier than I had planned, but is still BEAUTIFUL!!

Tomorrow I need to cut 4 pieces to sew together into the back panel, 19 by 19.
It is about 35"  by 35. 1/4".
And find where I put the white cotten batting.
There are a few surprises in it. LOL!! ♥
Just hoping i can manage the feathering in the free-hand quilting.
Keep your fingers crossed for me.

Heart Defect Quilt Fundraiser.

Love Ya Diane


In order to find CHD's we are advocating Pulse Oximetry testing of all Newborns. It won't find all, but most. This is SOO important. The Doctors need to find out if a baby has a CHD before it is discharged, so treatment can begin immediately.

Story in the local paper about a boy who never knew he had a CHD. He went for an medical exam, and dr heard a Murmur.

Children's Heart Foundation is doing great work funding research.

AHA does some CHD research, but the bulk is adult Heart Disease, not Defect research.
American Heart Association information on CHD

Congenital Heart Information Network

Adult Congenital Heart Association

Mended Little Hearts Local is Southwestern Pennsylvania

The other item we are ADVOCATING for is the ECG Screening for students going into sports.
Next time i will try to add some links for friends i have that are doing screenings, raising funds to do more across the US.


Monday, February 3, 2014

Feb 3 2014
Ma and Pa were away to their Class reunion get together. SO home alone, I worked hard on the Heart Defect Awareness Quilt center, the Feathered Heart. WHEW!!  Very difficult and forgot about the main thing with appliques, you gotta turn it upside down, so when you trace it and then stick it to the background it is correct side up or orientation. So the numbered pieces were not on the correct side. I had to WING it big.
I had my desk lamp under the kitchen table and opened up the center section for the leaf, that way I could see the Heart outlines through the pink fabric.

Heart outline with the table center opened up
That big thingy on the right is Ma's fryer she bought. $$.

89 little pieces. which didn't go together as well as i had hoped

The little pieces didn't go together that well, there was some Pink showing through. But when I stitch around them all, hopefully all you see is the stitching. Of course, my free -hand outline stitching is SOSO.

Will do my best, that is all I can do.

This is the fundraising page, please support me.

Thank you.
Love diane

Sunday, January 26, 2014

Heart Defect Research Fund Raising Quilt

Jan 26 2014
Heart Quilt
Ever since realizing that they were doing Catheterizations as early as 1958, but my doctors didn't do mine until i was 10, In 1967,  I have wanted to raise funds for heart defect research.
Well, even before that.
Why did they wait? Because of all my issues? Hemi-vertebrae scoliosis, Absent upper left lung lobe, Hypoplasia lower lung lobe, Patent Ductus Arteriosus (PDA), Hypoplasia left Pulmonary Artery and vein.
hypoplasia /hy·po·pla·sia/ (-pla´zhah) incomplete development or underdevelopment of an organ or tissue.hypoplas´tic   from The Free Dictionary

So I started ANOTHER QUILT,  Do I have unfinished projects?  SURE!!
But this was going to be all  BRIGHT  pink or red fabrics that had HEARTS on it, only I couldn't find enough fabrics. I guess, St Valentine's Day is the season, and I was looking in October, which is when I can get to one or two quilt stores.  (Birthday month)
As I worked on the heart, I decided I needed more. I managed to find some and order online more pinks and some had hearts on them, from a local store. January was SOOO cold, I wasn't going out much. I don't want to get sick, so if it is below 30, NOT going out. Then they rescheduled my Heart dr appt twice, and HAD to go out when it was 8 out there. Thankfully the high was 34, and it warmed up later, after I was home. ;(

I had found a GREAT idea in a Quilt Magazine a few years ago, a feathered heart. Only 89 pieces, TINY pieces.
But very Beautiful.
So going to post the Jpegs I did, i hope I don't get into trouble:

It is supposed to be a shadow-work type applique. But just want the main layer with all kinds of PINKS, since I couldn't find very many reds.
But ended up using a few of the reds, because I needed more variety. I didn't want the same fabrics to be too close together.

89 little pieces
HMM?? Can i do this?
All marked out on the steam a seam
I tried to put all the ones for the same fabric together, but as I was going around, the pieces for the same fabric are going to be too close together. I found I NEEDED more fabrics, the more the merrier. 
Utilizing 7 fabrics,  pieces  1-8-15-22-29-36-43-50-57-64-71-78-85

I tried several different ways, using programs in the computer and on Mom's Computer, but i finally went to the market and used their copy machine. The Heart base design needed to be enlarged 200%.
Layout of heart applique enlarged 200%

What am i going to do in the corners? Possibly paper piece some hearts?
I wanted to be done before i started the fundraising site, BUT not going to be near done.
About 30" By 30".
Can i raise  $1,000?
$500 each for 2 research projects?

I started the fundraising here. Please support me.

Love dek