22 posts tagged “patient blogger”

“Life is good” – PatientsLikeMe community member John_R speaks about his new life after being diagnosed with pulmonary fibrosis

Posted March 11th, 2014 by

Several people in the PatientsLikeMe community use the phrase “new normal” after being diagnosed with pulmonary fibrosis (PF), and PF member John_R doesn’t’ think his new normal is all bad. This month, he chatted with us about getting diagnosed with PF, bringing oxygen to the workplace, and how living with his Sweetie keeps him focused on the positive moments of his journey.

You were recently diagnosed with PF in 2013 – can you tell us a little about your diagnosis experience?

I was initially diagnosed with PF back in 2002 via a CAT scan with contrast. Around 2000, some haziness was seen on an x-ray, and my doctor recommended that I see a pulmonologist. I was getting ready to move to Texas, so I waited until I settled down and found a new GP. It was after my first physical with my new doctor that I was sent to see a pulmonologist. He sent me for a series of CAT scans from April of ‘02 to Jan ’03.

The first scan indicated “There are several patchy areas of infiltrate identified peripherally in both lungs. These are identified at the anterior and lateral upper lobes as well as in both lower lobes. Mild patchy infiltrate in the lingual and right middle lobe are also seen.” The third scan concluded “….these findings suggest mild fibrosis.” and “…mild stable interstitial airspace disease consistent with fibrosis given stability.”

The doctor indicated that my PF was “mild” and “stable” so not much to really worry about. Each time I visited, pulmonary function testing showed that my Forced Vital Capacity (FVC) dropped a few percentage points. My doctor did not seem to worry, so neither did I. In May of 2011 my father died from Idiopathic Pulmonary Fibrosis (IPF). That was when my pulmo started to show concern about my PF. In 2013 my FVC dropped to less than 50%. Off to another CAT scan with contrast. Insurance denied that procedure and required an HRCT (hooray for my insurance company!). The scans showed lots of damage, but were not conclusive for IPF. In August I had a VATS Biopsy performed that proved IPF.

Following the biopsy I was referred to my ILD Specialist at UT Southwestern.

You talked a little in the forum about your first day at work with oxygen – can you share a little about that for our blog followers? 

The first day I used oxygen was on Christmas Day. Since I had been out from work for the Biopsy in August, everyone knew I had lung issues. The week before Christmas I let my boss, the ladies in the front office and my guys know that I would be coming back from Christmas using oxygen so there would be no surprises.

I use the small M6 oxygen tanks in a bag that slings over my shoulder for my portable O2 use. That first day of using oxygen at work was the first day in a long time that I could climb the stairs up to the office without having to sit at my desk for a few minutes, gasping for breath and regaining my mental clarity. It was also the first time in a long time that I made it home with some energy left.

My oxygen use was quickly accepted at work. There were a couple of double takes when people who did not know I was going on O2 saw me for the first time. A quick smile from me was returned and all was back to normal.

How is life different with PF than before? What have been some of the hardest losses, and what have you gained?

“The New Normal” How do I explain how life has changed without sounding much more negative than I really am?

Life is different not just for me, but also for my Sweetie. Our new normal does not include some things that were important to us. We had to find a new home for our parrot, Tinker. Lighting a fire in the fireplace on a cold winter’s evening is part of our past. No more soaking in hot tubs or spending time at the shooting range.

We find other ways to be romantic, so the hot tubs and cozy fires are not that big an issue. I do miss Tinker and miss my time on the range.

Making sure I have plenty of oxygen has become a part of pretty much every decision we make. I am still the cook in our house. When I was first routing the tubing around made sure I could reach the stovetop with a bit of slack to spare. I also do the grocery shopping and, as we talked about before, still work.

Every chapter of my life that I get to spend with my Sweetie is the best chapter to date. Life is good. For the first time ever I have a year’s worth of vacation planned in advance. Vacation is going to be spent with family and I am really looking forward to those get-togethers.

Looks like you use your PatientsLikeMe PF Severity Score, track your treatments and chart a lot on your profile. What do you find most useful about these tools?

MyCharts is an awesome tool and more people should use it. The charts give a nice visual snapshot of how you are doing. The information is great to print out and bring with you to doctor’s appointments and I wish I had found PatientsLikeMe much sooner. I was just filling out paperwork for a genetics study and had to use several sources to collect information on medication history. It would have all been there if I had started charting sooner.

I also like to look at other peoples’ charts. I compare where I am to where they are and what they are going through. This helps me come to grips with my future.

What advice would you give to others who might be newly diagnosed with PF?

Number one, find an Interstitial Lung Disease specialist. Community pulmonologists are just not that knowledgeable about PF. The vast majority of their patients have COPD, Emphysema, Asthma and the like.  They just have little or no experience with PF.

Next I would advise to not read too much of the medical literature found on the Internet until after you have spoken with a specialist. There is a whole lot of scary stuff out there that probably does not pertain to you. I know you are going to read it anyway, so after you do, take a deep breath and remember that you are not average and that your circumstance is different from every other person with PF. My fibrosis was discovered a dozen years ago.

Finally, hang out in the forums. Ask questions, post ideas and help us support one another.


“MS cannot stop you from living your life and following your dreams” – an interview with patient advocate and PatientsLikeMe member Starla Espinoza

Posted February 7th, 2014 by

Multiple Sclerosis Awareness Month is fast approaching in March, but we just couldn’t wait until then to share our recent interview with patient advocate and PatientsLikeMe member Starla Espinoza, also known as baebae. On top of being a PatientsLikeMe member since 2007, tracking her health and sharing experiences with the community, she’s also a blogger and big advocate for raising MS awareness all year round. Check out what she had to say about her supportive family, her passion for MS awareness and the simple pleasure of riding a motorcycle.

 

 

 

Can you remember what your first signs or symptoms were? And what was your diagnosis experience like?  

My first significant symptom was a buzzing sensation in my left hip. I always describe it as “a microscopic bee or hummingbird” trapped in my hip that is desperately trying to escape. It was the strangest feeling, especially since I didn’t know what was going on. My diagnosis took almost a year from the time that the buzzing in my hip started. I had more symptoms like numbness from the waist down, a tight gripping sensation around my midsection (MS hug), and dizziness for 6 weeks, just to name a few. Within a 6 month time frame, I underwent tons of testing, including blood tests, spinal taps, MRI’s of my brain and spinal cord, a CT scan, and an x-ray of my spine. I was eventually told that I had Transverse Myelitis. On December 13, 2007, I was finally diagnosed with MS. My neurologist showed me my latest MRI scans and sent me home with a bag of information and a prescription for my MS treatment to be started immediately. I cried as soon as I left his office. Within 3 minutes I heard God’s voice saying, “Don’t cry, I will never leave you nor forsake you. So do not let your heart be troubled, nor let it be afraid.”

As a mom with three daughters, how has MS impacted your family life?

As a mom of 3 girls, my MS diagnosis brought us all closer than we already were. Their names are Daesia, Dayna, and Aliya and they were only 12, 7 and 6 when MS presented itself. The girls saw me at my worst before we knew what was wrong with me. They know how to support my condition and me. My first treatment involved daily shots, and they even participated in the beginning by helping their dad care for me and give me my shots. They, along with my husband, are very active in my efforts to raise money for the MS Society every year. We bake goodies for our bake sale and we have all pounded the pavement together to solicit donations from local merchants for prizes to include in our annual raffle drawing. My girls and my husband are true MS Warriors and advocates for MS. Makes me teary-eyed just thinking about all we have done together for the past 6 years to show people that MS cannot stop you from living your life and following your dreams. My girls are now 18, 13 and 12, and they want to do everything that they can to fight MS. We are all in this together.

You mention your religious faith and passionate activism to raise awareness for MS. Can you tell us a little about that?

My story proves that God can use me. You see, God has been by my side since the beginning of my MS journey and even longer than that. He showed me His purpose for me in this MS journey. I discovered that He could use me to raise awareness for a condition that a lot of people were unaware of. A passion was sparked inside of me by God to take ownership of this cross that I had to bear, known as MS. I developed the strongest desire to tell everyone everything that I knew about MS. That even though I have MS, it does not have me. I wanted to use my voice in the most effective way possible, and He made me a patient advocate about 3 years ago. I often get the opportunity to speak at events and dinners, radio and news interviews, and now an interview here on PatientsLikeMe.  All I can say is, wow, 🙂 I’m really doing this.

It looks like you use your Multiple Sclerosis Rating Scale, and track you symptoms and treatments a lot on your PatientsLikeMe profile. What inspires you to share and donate so much of your health data with the community?

Sharing my health information with the community is part of being an advocate. If I am willing to be transparent, hopefully others will be inspired to do the same. Together, we are soldiers in this battle against MS. Sharing helps me track important health information and improve research about this disease. It’s very easy for me to do, and I can even do it from my phone. In turn, it benefits us with new treatments and ways to deal with MS. I get excited just thinking about it. Tears again, oh my.

For those who might not follow your blogs yet, can you share what they’re all about?  

My oldest daughter Daesia gets credit for the creation of my MS blog. She was 12 when I was diagnosed and after 2 years, she started to realize that most of the people she encountered had never heard of MS. Her peers and teachers had no idea what it was. She wanted me to blog about how MS personally affects me. I was already a blogger so it was a no brainer. Daesia named my blog, Did I Mention My MS. What a genius idea for a 14 year old! In my MS blog, I share personal details about my MS journey. I even shared a post that Daesia wrote for a school paper.  Wow, it sure does give me a lot of insight about how she viewed MS in her young mind. My blog posts include information about my MS treatments, medications that I take to combat the side effects of MS, what I’m doing in my community to raise funds and awareness, personal struggles with doctors and how I fought for my rights at work as someone with an “unseen” disability. It’s all about the good, the bad and even the ugly issues that I have personally dealt with as an MS patient.

What’s it been like to connect to others living with MS on PatientsLikeMe?

The first time I heard about PatientsLikeMe, I thought, “What a great idea!”  Connecting with others who live with MS on PatientsLikeMe has been super beneficial in so many ways. MS patients are sooo resilient because after all, MS is not limited to one area of our bodies. It affects us from head to toe, physically and emotionally. We draw so much strength from each other, and PatientsLikeMe gives us the platform to share how we cope with everything from new treatments, clinical trials and social security disability benefits, to name a few of the topics discussed in our forums. I have even established a relationship with a patient who lives in my area via PatientsLikeMe, and she has even joined my walk MS team, The MS Warriors. I love the fact that PatientsLikeMe brings all kinds of patients together. I have shared the PatientsLikeMe website with so many people, including a friend fighting bipolar disorder and even my husband, who struggles with chronic pain.

Finally, we see that you like to ride motorcycles! Awesome! Tell us about your travels on the open road.

Aww, the joy of riding a motorcycle. I ride with my husband and it is such an exhilarating, invigorating and therapeutic experience, all at the same time!  We live in Northern Nevada (Reno/Sparks), and with the mountains in the background, we discover some of the most beautiful and picturesque scenery on the “open” road. You have no fear; it’s like flying like an eagle (the symbol often seen on motorcycle clothing and gear). I started out riding with my husband as a passenger until he bought me my own small bike for my birthday. It was only 550 cc’s, and he taught me how to ride it. Before I knew it I was following him on his 1850 cc Harley Davidson Electraglide Classic around town. I used to love it when we would go to downtown Reno. You see so much more when you are on a motorcycle. After 3 years, I sold my bike, and now I am a passenger again on my husband’s big (custom painted) Harley Davidson Electraglide Classic. We even have matching helmets to match our bike. Not meaning to brag, but a motorcycle enthusiast such as myself cannot talk about riding motorcycles w/o specific details. This gives the whole experience to non-riders and understanding to riders. Sometimes we ride in groups and take trips to Lake Tahoe, my favorite place. Surrounded by tall pine trees, cabin homes and casinos with the lake in the background makes the drive such a vibrantly wonderful experience. Every year in Reno, NV there is an event called Street Vibrations. It’s all about motorcycle enthusiasts. People travel from all over the country, sometimes on their bikes alone or in a pack with their club. It is a loud 3-day event, and we always look forward to it every year.