Thank You CF

An open thank you letter to cystic fibrosis (CF)…

Thank you, CF, for showing me the real strength of a human being and thank you for giving me the strength to fight you. Without you, I would not believe how strong our minds are and how strong our bodies can be. I would not know that a positive mind can influence our body’s health so much. I wouldn’t believe that us humans can go through a lot of sh%# without giving up.

Thank you for allowing me to realize the difference between a small and a big problem, allowing me to know that I shouldn’t fret over the small stuff. I need to focus on what’s important. You’ve helped me realize that I can think independently and that I don’t need to rely on someone else for my own happiness.

Thank you for sending me to an amazing team of doctors who know how to help me. You’ve showed me how to trust these doctors and realize that they know how to go up against you, that their care plans work.

Thank you for the understanding of all the medical terminology that is constantly thrown around me. This has helped me become more knowledgeable about my medications and the care plans, about the treatments I need to fight back against you.

Thank you for making me realize who in my life are my true friends, those friends who put up with the inconveniences you try to create, who put up will all the gross things that come with having CF. You’ve also helped me to cherish those friends who stick around.

Thank you for introducing me to some amazing people. I have met many people through the CF community and social media, people who understand and can directly relate to a lot of the struggles I go through. I understand the good in people and communities of people who come together for causes greater than themselves.

Thank you for showing me that I need to work for the things I want. Having CF makes me work for my health and understand if I don’t, I will get sick. That hard work has spilled over into career and has made me a hard worker in all that I do in life.

CF, thank you for allowing me to realize that there is always joy to be found, despite suffering, and that without that joy, my life would be so different. You’ve given me a story to share, allowing me to spread this joy to others through my story. Because of the joy and my ability to focus on the good, I have fun and I don’t think about you as much as I otherwise would. I’ve learned to take care of you first and second, to push you away, to move on past you, CF.

Thanks for my parent’s strength to have a child with CF, for giving them the energy to walk along me in my fight against you. My parents have been my biggest supporters in conquering you, CF, and not letting you take me out of this world.

And finally, CF, thank you for allowing me not to be afraid of death, realizing that it happens to everyone, and no one knows when it will come. For showing me how precious life truly is, that tomorrow is never promised so I must live in this day, this hour and even in this moment and never take one person or one second for granted.

Cystic fibrosis is hard, is complicated, is painful, is discouraging, and is time-consuming. But CF is life changing. CF is a part of who I am. Would I still be Jackie without it? The answer to that question is “no.” My life would be completely different. I am who I am because of CF and despite CF.  Thank you for helping to bring out my best self, to make me who I am today.

Love,

Jackie

New Hip, Who Dis?!

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New hip as seen via x-ray

A week ago yesterday I had my total hip replacement. And everything has gone so well. *knock on wood* I’m used to some complication happening so it is definitely a breath of fresh air for everything to go as planned. And this hip is WAY better than the temporary hip (called a spacer) that I had for 6 weeks before my surgery. The spacer was very uncomfortable and often painful. I basically laid around for 6 weeks, relaxed and did a little PT. I’m a little sore from my hip replacement but overall, I don’t have pain. I’ve been working hard on physical therapy exercises & walking. Starting yesterday my dad & I will be walking up and down the driveway everyday. Walking is the best exercise because it strengthens my muscles and increases my endurance. I’m using a walker because it allows me not to walk with a limp and I don’t want to get into a bad habit of walking with a limp. I’ve been having issues with my hip since last March. And they got really bad in October, which is when we decided I, for sure, needed a hip replacement. I was introduced to Dr. Hawken and immediately felt like he was the right guy for the job. He has done an incredible job and is an amazing doctor. So THANK YOU Dr. Hawken!!

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Practicing stairs at the hospital

I recently officially resigned from Lidl. In the last 2 years I only worked for 5 months, 8-10 hours a week. Then I had the issues with my hip and decided I needed more time off. So, I technically haven’t really worked in 2 years but was technically employed and on payroll. I’ve been doing a lot of thinking recently about what I want to do with my life and I’m not sure if finance is what I want to do anymore. So, I didn’t want to string Lidl along if I wasn’t sure that I wanted to come back and they also wanted a definitive answer of when I would come back, which I did not have. We ended on VERY good terms and I definitely plan to keep in touch with my team. That company is AMAZING and has been so good to me. So if there is a Lidl store near you, SHOP THERE. They deserve to succeed here in the United States. [I recommend their wine, chocolate & cheese.] I also know for sure I want to live a little with my new lungs. I really haven’t been able to because of all the complications I have had. My summer is full of a lot of travel & I am so excited!

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Walking the driveway with my dad

If I could do anything with my life it would be motivational speaking and starting a non-profit (if you have any experience in this, I’d love some help). I also plan to volunteer more with the CF Foundation and Donate Life/United Network for Organ Sharing.

Speaking of the CF Foundation, I was selected as an honoree for “DC’s Finest.” “The Cystic Fibrosis (CF) Foundation honors a select group of men and women from cities or regions across the country that are committed to professional growth through a guided fundraising and awareness campaign. These honorees exemplify strong leadership qualities, are active in their community and have excelled in their chosen professions. The honorees will enjoy many benefits throughout the campaign, primarily the knowledge that they are helping to better the lives of children and adults living with cystic fibrosis.” I have pledged to raise at least $2,500 dollars by August 22. If you’d like to contribute to my Finest Campaign please visit: https://metrodc.finestcff.org/jackieprice.

 It is also CF Awareness month. So if you head on over to my Instagram page, I am sharing facts about CF every day. 🙂

Peace Out 2017!

2017 has been a roller coaster ride. I have climbed, & stood tall, at the top of many mountains and I’ve fallen into valleys. I’ve experienced suffering, sadness, hope and happiness. Sometimes all in the same day. I was stranded in one place & I have traveled to different places. I thought I was horrible at art & I felt like an artist. We lost a dog (Scrappy) & we gained a dog (Fae). I learned I will eventually need a kidney transplant & we learned that my mom and brother are both matches. I found out I need a hip replacement & I found an amazing surgeon. I lost friends & gained new friends.

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Boston, MA – July 2017

What I am getting at here is that with every “bad” thing that has happened to me, something good has also happened. Sometimes not right away, but good things have always come. So we can’t sit on the negatives when surely something good is soon to come. While I know challenges are ahead in 2018, I made it through 2016 and through 2017…I can make it through anything. One year is only 1/26 of my life…that is only 3.8%. And as each year comes that percentage will become less and less. So in time, these challenging years will be a tiny percentage of my life as whole.

I have 8 goals for the new year and I want to be held accountable to reach my goals. So I am making all of them known.

1. Every week, write down at least 1 positive thing that has happened to me. Save them and read them to myself on 12/31/2018.

2. Partake in at least 5 fundraising/volunteer events throughout the year. Whether it is at an event or raising awareness for a cause.

3. Keep a positive mind.

4. Get a new hip and use my new hip to exercise more.

5. Travel to 3 places I have never been before.

6. Go on my first hike since transplant.

7. Make it to Wilmington, NC to learn more about where my donor, Samantha, is from.

8. Take a cooking class & cook more often.

I hope each of you have learned and grown during 2017. And I wish you the most health and happiness during 2018. Stay positive, stay happy and stay strong!! And remember that good things are always to come!

And with that I will say, Happy New Year!!

Some photos from 2017:

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First Lungaversary celebrated with friends
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Getting asked to be in my donor’s sister’s (Sara) wedding
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Fab Fae
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Stone Tower Winery fun with friends
Peace 2017
Peace out 2017!

My Mom is Simply Amazing

Mom1November is National Caregivers Month so I thought this was the right time to post about a very special person, my mom. I don’t even know if one simple blog post will do her justice, but I’ll try. Being a caregiver isn’t easy. It means you’re committed to helping someone, before you can help yourself. It means that you’re willing to put someone else’s needs before your own. Being someone’s caregiver is a choice, it’s not a requirement. And the decision to be one is done out of love. My mom is not only my caregiver but she is also my Dad’s, who has muscular dystrophy.

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NYC Summer 2017

The thing is, my mom didn’t chose this life. When she married my dad neither of them knew he had MD and they definitely were not expecting to have a child with Cystic Fibrosis. She has never once complained about the life that was chosen for her. She juggles taking care of my dad, myself and finding time for things she loves. If you walk into her bedroom you will find lots of yarn, spinning wheels and a weaving loom. Textiles are her thing and she is an amazing knitter. She can make anything from a simple scarf to a complex sweater. When she has to miss a knitting retreat or dinner with friends to help my dad or me, she says that she wants to be there with us. That she would rather be there to help us get through our struggle than go have fun with her friends. If that’s not pure love, then I am not sure what is.Mom3

You see, I’m alive today because of my mom. As a child you never want to do hours of treatments a day or spend time in the hospital. But my mom ensured everything got done and would spend every day with me in the hospital, finding ways to entertain me during it all. She kept my medications ordered and organized over the years and has spent hours at a time working through insurance issues. Now a days, I manage my own medications but that is because my mom set me up for success when it was my time to take it over. She prepared me for when Cystic Fibrosis would become my disease and when I would have to do things on my own.

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Mt. Vernon Rehab Hospital (Oct. 2016)

Last summer when I was in the hospital she came every single day. My mom’s presence made me comfortable. Some nights after she would leave me for the evening, I would be uncomfortable and unable to get to bed. I would send her a text telling her I couldn’t get comfortable or to sleep and she would jump back into the car and come back to the hospital until I fell asleep. Her presence made me comfortable. Her presence makes a lot of people comfortable.

Everyone who knows my mom can attest to the type of person she is. She is a firecracker and knows how to handle a tough situation. When I was in the ICU last summer, the nurses knew she was a ball of fire. She taught kids in drug rehab and every single one of them loved her, they learned from her and they graduated high school because of her. She knows how to give that tough love that many people need. My mom is also very loving. She always wants a hug in exchange for a glass of milk and would never let go if it was up to her. I still notice her frequently embracing my dad even though he can’t hug her back. That’s the thing about my mom, she does things out of the kindness of her heart and never expects anything in return.Mom2

So this month, for national caregiver month, I wanted to make sure everyone reading my blog knew how amazing my mom is. How amazing of a caregiver she is. How kind of a person she is. And how I’m alive today because of her. If you’re ever privileged enough to meet her, you’re one lucky person.

My Team

Let me tell you about “my team” while I’m in the hospital.

Transplant Pulmonologists

Infectious Disease

Pharmacist

Nephrologist

Nurse practitioners

Dietician

Social worker

Fellows and medical students

Well, of course there’s the transplant pulmonologist who leads the team and monitors my vital numbers related to lung function and orders tests like CT scans and blood work. The transplant pulmonologist works directly with my infectious disease doctor who looks at the buggies that are growing and decides what antibiotics and dosages will best kill those suckers. They order different types of lab work to check for infection that might be in my blood or other places. The pharmacist who I know well isn’t one of those pharmacists you’re thinking of like when you go pick up a prescription at the drug store. He works with the team to determine which course of medications are best for compatibility and avoiding bad drug interactions. The crazy thing is, the doctors ask him questions about compatibility and looking at him, you can tell his mind is running through his pharmacy reference encyclopedia and out pops an answer. Can’t forget about the nephrologist. While all this is going on, he might have a thing or two to say about the impact on my kidneys. He knows the priorities from being on the team and helps monitor when my kidneys have to take a hit. The transplant drugs are hard on the kidneys so he is an important part of my team.

The nurse practitioners are like glue that holds everything together. They are there to answer any questions I might have and to take information back to the team. I can bother them or complain and they always help and encourage me. The dietician makes sure I’m bringing in enough calories to fight off any infections. She reviews with me foods that impact blood sugar, potassium and a bunch more. The social worker makes sure that my spirits are high and manages any paperwork. She’s aways easy to chat with. The fellows and medical students come along with the team and add to our conversations. I always want to know where they went to school and how much longer they have in their training. My team has great camaraderie.  It’s easy to tell how well they get along, how much they enjoy their work, and how they are dedicated to each of their specialities. I have a lot of faith in them, fun with them, and am thankful for them!

Meeting My Donor’s Family For the First Time

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Samantha’s family & my family

“Hello” I answered the phone. Recognizing the number as one from Fairfax Hospital. It was the social worker. It was weird that she was calling but I had my one year transplant clinic appointment coming up & I assumed she wanted to prepare me for some things we would discuss. “I have a letter for you from your donor’s mother. Would you like me to email it to you?” I was in shock, I hadn’t sent my letter yet. It’s not often that a recipient receives any response from their donor’s family and it’s even more rare that the donor’s family writes first. The only word that came out of mouth was “Yea.” With shaking hands, I immediately went to my email and started to read.

“Dear Recipient,

It is with both sadness and joy that I write you this letter. My daughter, my heart passed way 12 months ago, on June 19, 2016.”

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Angela listening to me breathe

Tears started to run down my face. I continued to read about Samantha. I felt sadness that she had passed away and sadness for the grief her family had endured over the past year. My heart hurt for them. But I was grateful that she left me the gift of life through a new pair of lungs. It was a while before the tears would stop. I immediately called my mom. She thought something bad had happened because I was crying so hard. “I received a letter from my donor’s mom,” I cried into the phone. She came home right away and I read her the letter. She too cried with me. I called my brother, Byron, who lives in Boston. After I read the letter all he could say was, “Wow” and I could hear the tears in his voice. I read that letter many times that day & I still read it often today.

I was planning to hand write my letter to her family and send it after the 4th of July but decided that, since I had received one first, I wanted to send mine out right away. I changed a few things & sent my letter only hours after receiving the letter from Angela. And thankfully I did because the Donate Life Donor Family Advocate was going out of town for the next week & would not have been available to send the letter on to Angela, had I sent it after she left.

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Samantha’s sisters & I (Allison, left & Sara, right)

One thing Angela & I wrote in our letters was that we wanted to meet each other. I was excited she wrote that she wanted to meet because this is something I always wanted. To meet my donor’s family and thank them in person. From the moment I found out I had a lung transplant, my mind immediately went to my donor and since that day I’ve thought about them every single day. Who were they? What did they like to do? I even wondered what caused their death. I now knew that my donor’s name was Samantha, some things she enjoyed and I would later find out more. I was anxious to plan our meeting. We decided on September 9th because my brother was going to Spain for 3 weeks in August and of course we wanted him to be included in the meeting. We decided not to communicate before then so it was two months before I would get to talk with Angela again.

We pulled up to the complex where the Donate Life office was, our planned meeting spot. Emotions I have never felt before started to flood my body. I was nervous, excited and even scared all at the same time. “What would they think of me?” “Will I say something stupid?” Thoughts similar to those you would have before a first date started to run through my mind. This was WAY more important than a first date, though. Then I started to think, “Am I ready for this?” Immediately followed by, “Of course you’re ready for this.” Butterflies started to go crazy in my stomach.

We waited outside until we got the call to head up the elevator. We walked through the glass doors of the office. There was candy in a small bowl near the coffee counter – I ate two laffy taffy’s as I prepared myself for the meeting. We were told it was time. I walked down the hallway and into the arms of Angela, Samantha’s mom. We both cried into each others shoulders. Neither of us had words for the moment, just tears. Angela had told me that for the first time in a year she felt Samantha’s presence. That meant so much to me, that I could give Angela something so special. I let Angela listen to me breathe…hear Samantha breathe for me. Most importantly, I let Angela talk to me about Samantha. The donor family meeting was so important and special to me. The day was all about Samantha, though, & the great gift she left behind.

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Samantha’s dog, Benelli Rose

After our initial meeting, I invited Angela and the rest of her family back to my parent’s house for some BBQ. I had been really nervous to ask for the fear that they would say no. They accepted the invite! We spent the next 4 hours hanging out. We sat out on the screened-in porch all night. I learned more about Samantha and they learned more about me. We shared photos and stories. Samantha’s youngest sister, Allison, is only 16 years old and at first she was quiet. But as the night went on I felt her becoming increasingly more comfortable and talkative – it was so special for her to open up to me. I also got to meet Samantha’s sweet sweet dog named Benelli Rose. I am usually afraid of bigger dogs, but she was so sweet, gentle & kind!

Towards the end of the evening, I stood in the hallway of my parents house with Sara (Samantha’s younger sister) and she said that she felt so comfortable around me. Like we had know each other for more than just hours. I felt the same way; it was an instant bond. A bond that we will have forever.

The night flew by and some parts are even a blur. There is a saying about not remembering everything that someone says, but you will remember how they made you feel. I don’t remember everything we talked about that night but I do remember how I felt. I was excited and happy. I remember laughing & smiling a lot. I also remember feeling sad & holding back tears at times. But most of all, I remember how comfortable I felt all evening.

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Samantha’s parents & I (Ray, left & Angela, right)

Angela, Ray, Sara & Allison & I have kept in touch. We met in Richmond last weekend and it was so nice to see them again. I hope to find my way down to Wilmington, NC one day to meet the rest of Samantha’s family (especially her grandmother) and her friends. I want to see where she grew up and enjoy some of the same places Samantha enjoyed.

Meeting Samantha’s family has been the greatest experience of my life. I encourage all recipients to write a letter to their donor’s family. Even if you don’t receive a response, letting them know how thankful you are is so important. And it could just mean the world to your donor’s family. If your the donor’s family, I encourage you to be open about writing a letter to the recipient and the possibility of meeting them. Angela has told me that she felt angry about Samantha’s death and when she received my letter she felt peace. Knowing that I gave her that, was so so special to me. My decision to write her and meet was definitely the right one.

If you’d like to read my letter to Samantha’s family, click here. To read Angela’s full letter to me, click here.

 

 

The Letter to My Donor’s Family

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My donor, Samantha’s, mom & I
On Monday I shared with you the letter I received from my donor, Samantha’s, mom. Today, I share the letter I wrote to her. I had wanted to hand write my letter (I had already typed it up) and was planning to snail mail it after the 4th of July holiday when I received Angela’s. I decided to reply that same day via e-mail because I was so anxious to get the letter to her. Next week I will share with you my personal experience meeting Samantha’s family for the first time. My letter to Angela:

“Angela –

I’ve imagined writing this letter to you ever since I woke up and found out I had been transplanted. I’ve been curious about who my donor was, the type of person they were and their interests. I’ve thought of what I would say and the words I would use to thank them and their family because a simple “Thank You” is not enough. I’ve had my letter drafted, prepared to send after the 4th of July holiday, when I received yours. I had always wondered if I would hear back from my donors family. One of my biggest fears about writing is that I wouldn’t receive a reply but decided I had to write because they needed to know how their loved one saved me and how grateful I am.

Thank you for telling me about Samantha, I can only imagine how lovely of a girl she was.

Samantha saved my life on June 21, 2016. I received both of her lungs.

I’m 25 years old and was born with a genetic disease called Cystic Fibrosis that causes sticky mucus to build up in the lungs, causing frequent lung infections. These infections scar the lungs and cause a decline in lung function. I have lived my life as normal as possible despite my disease…attending college, having fun with friends and starting a career. There have been plenty of large speed bumps along the way but I just moved over them and kept going. I knew transplant was going to be in my future but was not expecting it for a few more years.

My lungs took a rapid and unexpected turn for the worse in June 2016. I was placed in a medically induced coma on June 13, 2016 with the hope my lungs could rest and work again on their own. I made the doctor promise me that I would wake up again. My lungs completely failed me days later and I was placed on an external heart and lung machine (ECMO), doing all the work for my lungs. My doctors decided the only hope that I would ever wake up again was a transplant. And so, with the help of my parents and older brother, they listed me for a double lung transplant. Without Samantha’s lungs, multiple nurses told me, I would not have made it another night. I was very very sick.

I won’t say this last year has been perfect, I was in the hospital for 4.5 months after my transplant and I had to build the strength to do everyday life things again like walk and hold a fork to eat. But I have made such great strides and am going to the gym regularly, something I despised before transplant because I would become out of breath. I am back at work part time after 11 months off – it is such a great feeling to be contributing to something. I am hanging out with my family & friends who mean so much to me. I have travel plans for this year to visit my brother, Byron, in Boston and my aunt in Colorado. I enjoy doing art and have a new found interest in taking pictures/videos on my GoPro and creating movies. I have Samantha to thank for this. I want you to know that my body is accepting Samantha’s lungs and I have not had any signs of rejection. Her lungs continue to breathe for me.

A day hasn’t gone by where I haven’t thought about my donor and their family. Now, I finally have a name. I know every day I have here is because of Samantha. I will know that for the rest of my days. I call her my angel looking over me everyday.

I want you to know the type of person I am. I could sit here and write what I think of myself but I wanted you to know from an outside perspective. So I’ve asked a couple of my closest friends to write honestly about me. Here is what they said:

“Jackie makes LOVING life look effortless – because for her it really is. She’s a person who has a true lust for life and all the adventures it brings. She’s the person who won’t give up when there are obstacles in her way or the odds are against her. She’s the person who will, despite everything, find something, some-reason to love life and honestly, she’s contagious in that way.”

“Jackie’s thirst for life is far greater than anyone I’ve ever known. In the midst of her constant hardships with CF, her optimism shines through as she continues to feel immensely grateful for all of life’s gifts. Having had the experience to attend a best friend reunion vacation with Jackie recently brought an insane surprise amount of joy to all of us. The miracle that she is with us today is one we are forever thankful for. I can’t wait to see what life accomplishments are in store for Jackie. She is an absolute warrior, and her strength is inspiring to all. The quote ‘keep on keeping on’ is one she lives by. And she does so with a huge heart, and a smile on her face.”

“I met Jackie when I was 12 years old when she was randomly assigned to my soccer team. At first I thought who is this wild child. She had so much energy it was almost annoying. I remember the day we became friends. We were hosting a soccer party at my house and all he girls on the team were downstairs while the parents were upstairs, with the exception of Jackie. It felt wrong so I went upstairs to talk to her and started a friendship that grew into family. Jackie is my only friend brave enough to tell me like it is and kind enough to want the best for me the same way my parents do. She will tell me if a boyfriend is no good, demand I ask for a raise at work because she knows my worth and refuses to ever let me settle. People like Jackie help the ordinary see all the extra out there in the world. She has taught me to value myself and live everyday to the fullest. She may be a control freak, but its only because she knows exactly what she wants out of life and isn’t afraid to go after it.”

I am happy that you wrote you would like to meet, because I also would like to meet you and your family. I want to hear more stories about Samantha and what she liked to do. More about her big heart and what seemed like amazingly kind soul. I am going to ask that they release my personal email address to you so we can continue to communicate that way. Thank you so much for writing Angela.

Sincerely,

Jackie”

I Forgot to Introduce Myself

Hi everyone! I just realized I’ve never introduced myself. So here it goes…

My name is Jackie Price and I’m a born & raised Virginian.beach It’s the greatest state (in my [non] humble opinion) because it’s a short drive to the mountains and the beach (which I love)…the best of both worlds. On the weekends I’m usually hanging out with my family or friends. I’d say (I think my friends would too) that I’m the quirky one of the group and maybe a little weird. Or a lot weird, it just depends on who you’re asking. I ask a LOT of questions. But hey, I’m a curious person & if you haven’t given me enough information what else am I supposed to do? I put A1 Steak Sauce on my rice…and on my steak, of course. My favorite food? Yupp, you guessed it, rice. Or sushi. I can’t eat raw fish anymore so I stick with the cooked stuff now. People usually think I’m about 8 years younger than I actually am. (I’m 26.) But in 10 years I’ll appreciate that, right?! I own a [semi] hairless dog named Fae.

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Fab Fae.

She’s so ugly she’s cute. My favorite store is Target, basic right? Wegman’s might tie though. How does one love a grocery store so much!? I actually work in the corporate headquarters of another grocery store (that I also love…I can’t tell you which one, you might show up at my office one day…), so maybe that’s how. And if you’ve never had Popeyes onion rings, go. right now. and try them. Oh yea, and I have cystic fibrosis & had a double lung transplant last year.

So here I am telling my story to the world (or whoever decides to read my blog).

I decided to start blogging because I have not been dealt a royal flush or even a pair in the game of life. I’ve been through a lot of $%*# in my 26 years on earth, more (a lot more) than some people ever will in their entire lives. And you know what, that’s ok. Because life isn’t fair. But I’m still here today, remaining positive and living my life. I’ve learned a lot over the years, about myself and life. I know that I can help others who weren’t dealt that royal flush make it through anything. Or someone who’s just having a bad day. We can make it over any speed bump, or even mountain, together.

One day I’d love to do inspirational/motivational speaking. (If you’re interested in hiring a speaker for an event or assembly, contact me. I’ve been told I’m pretty good (I’d have to agree) & I’ll do it for free…for now.) So that’s the goal I’m working to…& I’m a hard worker so I know I’ll get there.

So, come follow along! No but really, enter your email address in that little box under Follow My Blog and click Follow. You won’t regret it!

Have any more questions for me? Post a comment and I’ll answer it!