Livin' My Life With PH!!

Lovin’ My Life with PH By: Jessie Follett When you are a little eight year old girl you have big dreams. Dreams of being a ballerina, a princess or a teacher. You don’t think about going to bed and never waking up again. You don’t think about leaving your family, friends and your favorite Cabbage Patch Kid doll. I did. I was diagnosed with Primary Pulmonary Hypertension in 1988 as a scared little girl that instantly had to grow up. I cried for my mom to sleep with me in case I didn’t wake up. I took all the attention from my little sister who didn’t know what was wrong with her big sister and best friend. My parents divorced and everyone looked at me with those pity eyes. “That poor girl, she’s so young.” I began calcium channel blockers to control my PH throughout my teenage years. I felt like an outcast all throughout school. I couldn’t participate in gym classes, sports or sometimes even slumber parties. I gained weight and used oxygen when I slept. I only had a couple...

August 14-21, 2010, Joe, Michelle, John and I were in Louisville, Kentucky, or as you as it in Louisville, Looyval!! We had a fantastic time. Michelle and I are members of the Muskegon Eagles Auxiliary #668 Ritual and Drill team. We were in Kentucky to preform at the Fraternal Order of Eagles National Convention. Our whole team did a great job and came in 1st and 2ND!! While in Louisville we went to the Slugger Museum. It was great to see how bats are made and even watched them make bats for Derek Jeter! We even got mini souvenir bats to take home. The whole drill team also went on a lunch cruise on The Belle of Louisville, the last steam boat in use. It was a nice lunch and ride, but it was soooo hot! The 4 of us also went to Mega Caverns. It is a cavern under the city that was once used as a bomb shelter and we rode in a tram through it. The whole week Joe and I walked the town and visited with people from all over the country. It was great. Joe and I wanted to do something to rememb...

My baby will be 10 years old on June 14th. I can't believe it. We had a small party for her on sat. and all the family was there. Mom, Dad, Grandma and Grandpa Grow, Grandma Short, Grandma Kathy, Aunt Michelle, Aunt Jodi, Aunt Sherry, Paige, Blake, and Raven. Brianna is growing up so be such a wonderful, caring person. I hope God continues to bless her. She got spoiled this year with American Girl doll toddlers and stroller, clothes, Zhu-Zhu pets, and Webkinz. Brianna even picked out the Monkey on her cake and the lime green frosting! Happy Birthday baby!! Mom and Dad love you sooooo much!!!

On this day of your life, Jessie, we believe God wants you to know ... that the greatest happiness in life is knowing that you are loved for who you are, and sometimes in spite of who you are. This is what my "Message From God" facebook app said today. This touched me. I have been fighting a losing battle with my weight since I was 10 years old. I was a freshman in high school with a weight of 260. I have lost a lot of weight and gained a lot of weight in the last 15 years! I am the definition of a yo-yo dieter. My doctor told me in order to qualify for a lung transplant if it becomes necessary, I would have to lose 40 pounds. So I am on the journey to weight loss and a lifestyle change, AGAIN. This time it feels different. I want this to be my new life forever, not just another diet. I am eating a heart healthy diet, low in fat and plenty of lean protein, whole grains and veggies. I love The Biggest Loser cookbook. I am exercising several times per week. I know I will f...

This is my bowling team at Northway Lanes. My husband Joe and I plus our good friends Bob and Becky. We have been bowling together a couple years. We bowl on Sunday nights on the Mixed Up league. We have alot of fun with all the people and sometimes we actually bowl. My high game on that league is 220! I love doing things with my husband that we both enjoy. It allows us to spend time together and have fun. I love our name "Gutter Guppies" because it fits us. At least once a game one of us, mostly me and Becky, are in the gutter! Hopfully we continue to bowl together for years to come!!

This is my Hickman Central line. As of today I have had 4 in the last 8 years. The others were taken out due to infection. They are not too painful to put in, it's the healing time that is painful. Once in, I can't feel it and I live life as normal as I can. I clean the site a couple times a week with a cloraprep dressing kit. I change my lines on a biweekly basis also. My loop under the Tegaderm dressing is to prevent pulling the line out in case I pull on it. I am not suppose to get it wet but with showers it's impossible to not get it wet. On occasion I get a site infection with redness, pain and puss but those go away with antibiotics. I sometimes ketch my lines on everything like chairs, the dog, bowling balls, tables, my own body... It's become a comedy act at home, as my daughter and hubby lovingly call it my leash. All my friends and family are even cautious with me and my pump. I even sometimes go swimming in a pool with my husband holding my pump while I swim ...

Ok, I know I am only 30, but I recently sent away for my first drop spindle. The idea of creating my own yarn is something I have wanted to do since I began knitting 3 years ago. Believe me when I say that it's not just old people knitting anymore!! One day I decided to pick up a "Teach yourself to knit" book and that was it, I was hooked! I have knitted hats, mittens, scarves, American Girl Doll outfits, socks, bags and ipod cases. I also crochet. My Grandma Grow taught me when I was 10 years old and now that she is gone, I feel close to her through crochet. I am hoping one day to teach Brianna how to knit and crochet. Here is my first ply of colored Merino that I bought off Etsy.com from a Michigan Sheep farm. It is so soft and easy to spin so far. I am a park and draft spinner. I learned from many youtube.com videos. I am planing to make a pair of soft socks with this yarn. Wish me luck. It might take me a long time to finish because of the big move coming up and all t...

Joe and I went and signed all the loan papers today! We are buying my first house and I am sooo excited. I got frustrated at first because we looked at so many houses and didn't like them. God just wanted to wait for the perfect one! Here are a couple pics of our new house. We should be closing on June 7th!! It's kinda overwhelming to think about cleaning, packing, moving, changing address, mailings and all my medicine providers. It's exciting at the same time. I am glad Brianna will be at the same school. We are going to be sooo happy in our new home!! It is move in ready. New carpet, paint, appliances and sinks. The driveway is freshly poured and the landscaping is all new. I even love the small plum tree in the frount yard. Off the dining room is french doors that lead out to a nice deck and large back yard.! HOME SWEET HOME!!

Flolan is a medication that runs through my central line into my blood stream 24/7. I have been on Flolan since Jan. 22, 2002. It's a difficult life to be connected to a tube and pump all the time. No swimming or rough activities. Changing cassettes, mixing the med, dressing changes, line changes, infections, batteries, tubes, etc. blah, blah, blah,! I don't let it get me down. This medication has saved my life. Before Flolan I couldn't do anything and now my life is almost normal. I bowl weekly in 2 leagues, I knit, shop, ride my bike, and do whatever I enjoy. I am not letting Pulmonary Hypertension run my life. This is a blog of LIVING with PH, not dying with PH!!!