Livin' My Life With PH!!

This has been a year of terrible loss for my family. I lost my Uncle John Short in June of 2014 to a tragic logging accident and May 12 I loss my Uncle Richard Grow to a heart attack.  These losses are hard on me because it makes me think of my own mortality. According to the doctors I should already be dead. My PH should have killed me years ago. I am glad that God has his own plan for my life. He had his own plans for both my Uncles too. I don't need to feel guilty for being alive. I just have to live my life to the fullest and enjoy everything. I need to stop and smell the spring flowers, enjoy spending time with everyone I love and be the best person I can. I need to share memories of those I have lost and love the time I have left on this earth.

This is a winter update from me. It was not a good winter for me.  I dealt with a line infection, IV antibiotics at home, and a new central line placement all before Christmas.  I then became sick with a cold/bronchitis which took me out of commission for he month of January.   I managed to help my hubby put up Christmas lights because there was no snow in December. It was a great time with family and friends. My bowling team had a little party, then we had parties with my Mom and then Dad's. I always love spending time with all my family. We also had a cookie making parting at the church with all the grandkids. It was special. It was also the first Christmas without my Uncle John. It was sad. His loss has rocked our family hard. We got record breaking snowfalls and cold temperatures which all but home bounded me until the end of February.  Now that March is here I am feeling great. I am getting out of the house and doing more things. I am enjoy driving my da

I was cruising along in life happy, healthy (for me) and enjoying my experiences that made me forget I have a chronic, incurable disease called Pulmonary Hypertension when BAM, the doctor said line infection and sepsis! I have had my current line in my chest since 2011. I have been having amazing hall walks and echoes that resulted from lower pressures than in the past. I began to feel like I wasn't sick. That was until a few weeks ago when I spiked a fever and went to the hospital. After lots of blood work and blood cultures that came back negative, I was told I had a tunnel infection in my central line. I did oral antibiotics for a couple weeks. The infection seemed gone. Then it flared up last week with high temps and pain in my site with drainage and redness. I knew what it meant. My wonderful husband drove me to U of M hospital 3 hours from home and I was admitted. The whole thing was traumatic even though I have been on Veletri 12 years. The ivs, blood draws, cultures

  I want to introduce you to my Spinning Wheel. I got it February 2013. I have got to play with it for almost a year.  I love it!!  It is an Ashford Kiwi. I purchased it through The Woolery . T hey have great customer service.   It came with a lot of different pieces to put together.  I decided to stain my wheel with Mins Wax in a natural color.  I let that dry for a day the then my hubby helped me put it together.  I got a Jumbo flyer kit with my wheel and 2 pounds of wonderful fiber.    Assembled!! This is my first attempt at spinning a 2 ply. It is 100% Alpaca. It was so soft and yummy!! Spinning while watching TV. It is very nice after a long day to just unwind and spin away the day. Falkland fiber.     Here is the Alpaca washed. It fluffed up! I really enjoy the feeling of slowing down and doing something my ancestors did centuries ago. It is a wonderful apocalyptic skill to have too!! (As my hubby points out

     I know that I have not posted in more than a year.  My life has been wonderful and full of living.  I have been enjoying my family, bowling, knitting and riding our motorcycle with the hubby.  I decided to post today because it is my 12 year anniversary of going on my IV medication, Flolan and then Veletri for my PH.  It has saved my life.        I had my Hickman central line placed on January 22, 2002. I started Flolan in the hospital at the  University Of Michigan in Ann Arbor, MI. I was admitted in the hospital for 5 days as my doctor increased the Flolan to a therapeutic dose.  It was the most frightening experience ever.       I was 23 years old, I had a 19 month old daughter and a boyfriend of a year.  I was told to get my affairs with my daughter and my life in order because my PH was so severe.  I was so sick that I was blue all the time, I couldn't walk around with out getting dizzy or passing out.  I felt like shit!  I felt like my time was short and I was depress

O n May 5, 2012 Brianna, Joe and I took a family vacation for the weekend to Detroit, Michigan.  Since our 9 year anniversary is on May 10th and Joe's birthday is on May 13 we combined everything into this fantastic weekend!  We got to see the awesome Detroit Tigers play the Chicago White Sox.  Even though the Tigers lost the game, it was one of the best family vacations we have ever taken as a family.  We stayed in a hotel with a pool and went swimming.  We went shopping at a 3 story tall mall that had a cool fountain and large art everywhere.  I love any activity that lets me spend more time with the 2 people in this world that I love the most!!