Interview April – Ellie Trinowski

Let’s meet our next Guest (with the gorgeous smile), Ellie Trinowski, and find out more about her:

EllieTrinowski

Introduce yourself and tell us a bit about you…

My name is Ellie Trinowski, and I live in Cleveland Georgia. I’m a wife, mother, and Grammie.

Before I stopped working, I was an event planner and coordinator for weddings in the Northeast Georgia Mountains. I worked with wineries and catering companies to create memorable events in picturesque settings. I loved my work. Now, I am a full-time grandmother of a talented little gymnast named Violet. I love this gig, too!

Chronic illness(es)/disabilities I have…

I have psoriasis(PsO), psoriatic arthritis(PsA), fibromyalgia, epidermolysis bullosa acquisita(EBA), and bullous pemphigoid(BP).

Beyond these autoimmune diseases, I have also survived multiple bilateral pulmonary embolism, and I live with a supraventricular tachycardia.

My symptoms/condition began…

I was 17 years old when the psoriasis begin. It wasn’t until I was 44 years old that I was diagnosed with psoriatic arthritis. Within the next year, symptoms of fibromyalgia began.

In the summer of 2017, I began realizing symptoms of a rare skin disease called epidermolysis bullosa acquisita. By the end of the year, I was diagnosed with bullous pemphigoid.

My diagnosis process was…

I have been very fortunate in the duration that it took for my disease processes to be diagnosed by medical professionals. The largest obstacle was the pain and limited mobility that came with PsA initially. It did take almost two years of suffering before I found the right doctor to diagnose me with PsA. Dr. Jatin Patel also diagnosed me with Fibromyalgia and recognized the symptoms of my rare skin disease. He was expeditious in getting me to a dermatologist, Dr. Carmen Julian, for evaluation. After several biopsies and blood work, I was diagnosed with EBA. Finally, it was determined that I also had BP at Emory in Atlanta by Dr. Ronald Feldman, who is the professor of dermatology at the clinic for blistering diseases.

The hardest part of living with my illness/disabilities is…

I do not appear sick. It is incredibly frustrating to have people judge me when I use a mobility cart in a grocery store and have people ask me why. I’m 50 years old. Once I had an elderly woman walk up to me, while I was on a mobility cart, and she asked me to get off because she needed it more. Of course, there was no way for her to know that I had a flare of all of my diseases at the same time. I was in a lot of pain, I couldn’t walk well and my skin disease was causing ridiculous itching. I was feeling frustrated and embarrassed because she did this in the middle of the pharmacy area of the store. I relinquished and gave up the cart to her.

A typical day for me…

Involves a lot of driving!

Now that I am a full-time Grammy, I drive my granddaughter to school, and I pick her up every day. I take her to gymnastics practice, and we might go to the park if there is no gym. She helps me pick up groceries and we head home.

If I am not flaring, I plan dinner most days, and if I’m doing really well dinner actually gets made! I try to do one thing that contributes to house cleaning every day, like vacuuming the living room or cleaning a bathroom. I find that things don’t get too out of hand that way. Violet always helps me out with chores, as well.

By early evening, I am typically on the couch because I’m toast! I will make it into my room, take my medicine and fall into my bed by 8pm, where I watch Netflix.

The one thing I cannot live without is…

The support of my family! I am blessed beyond measure! My husband works full-time and still does the laundry for me and anything else that I can’t handle that I would have done before my disabilities. My mother and father live right next door, and they are incredible when it comes to anticipating my needs. Dad gave me a cane when walking became difficult. Besides checking on me often, my dad brought a walker over before I admitted I needed it. My mother randomly shows up with leftovers or muffins, and a smile to cheer me up. My little Violet fetches things for me, and helps me in the kitchen, or when I need to tidy up the house.

Being ill/disabled has taught me…

Although I have never been one to judge, being disabled has taught me never to judge a book by its cover. You never know what somebody is going through. It has also taught me that life is short and that you must make the most of every day. After being admitted to the hospital on October 5, 2017, and being told I was lucky to be alive after blood clots had been found in both of my lungs, I tend to look at every day with different eyes. I’m incredibly grateful for my life.

It is not always easy on painful days, but it is imperative when you consider it might be your last.

What advice would I give someone recently diagnosed…

I would tell someone who was recently diagnosed with an illness or disability that they must stand up for themselves. It is so important to speak your truth and ask plenty of questions. Take notes and research responsibly. Instead of researching on Google, type in Google Scholar and utilize that platform for reliable research. Ask for a second opinion if necessary and get to know others who suffer from chronic illness. This gives you a sense that you are not alone and it is also a great resource to gather ideas to help yourself.

My support system is…

I have always believed that it takes a village to accomplish anything. As I mentioned my family is my number one support. I also value the social media community of chronically ill patients. I am grateful to the people who spend time sharing their experiences and knowledge with others to effect change in policies, as well as, suggestions for the lifestyle alterations we must make in our lives. Others who have lived our pain and challenges sharing their experience is a priceless resource I am grateful for!

If I had one day symptom/disability-free I would…

Go for a hike in the mountains with my granddaughter.  I used to push Violet in her stroller all over this beautiful place we live in. When she became a toddler, I would take her with me on hikes to wear her out and get a good nap out of her! I had no idea back then that this simple ritual would be taken away from me before I was 50 years old.

One positive of having a chronic illness/disability is…

The ability to effect change. Because of outlets like the National Psoriasis Foundation and the Arthritis Foundation, I can connect with others and use my voice to effect change in my state and even in my country. I am currently advocating for step therapy reform in the state of Georgia. I was able to bring my voice to this legislation by traveling to the Capitol on Advocacy Day and share my story with others. I love that sense of accomplishment and progress.

My social media links are:

https://www.facebook.com/grammiesdoublewhammy/

www.instagram/grammiesdoublewhammy

www.twitter.com/ellietrinowski

www.grammiesdoublewhammy.com

Advertisements

20 thoughts on “Interview April – Ellie Trinowski

    • I am genuinely grateful for Pamela and the work she accomplishes through her blog. I appreciate the opportunity to share my story! We all need each other on this difficult journey!

  1. Hi Ellie,
    so great to read your story and see your smiling face. Your experiences mirror mine a lot as I have autoimmune conditions as well as fibro, can no longer work except for my lovely days with grandchildren and I also think a good day is when I cook dinner! Unfortunately I took a long while – 10 years to get a diagnosis. So happy that some people get one quicker than that.
    I have started cooking dinner in the mornings as I feel like I have done a really good thing for all my family, who work very hard. Keep on advocating, keep on inspiring people. PS Thanks to Pamela for this great series

    • Hi Lee!

      It is always so nice to meet someone who just understands! Knowing that you can relate makes me feel more normal. Haha. I know there are many of us out there. People who know what it’s like to wake up feeling tired. To know that stiffness and those bolts of lightning that go through our shoulders. Knowing that our families understand, but it doesn’t make it any easier. Also realizing how much love is in a prepared meal from someone with a chronic illness.
      Thank you for reaching out . Please keep in touch!

      Ellie💗

  2. Hi Ellie, Thanks for sharing your very positive and up-lifting thoughts. I know you will help a lot of people, whatever they are going through. You made a really important point about not judging other people, because you never know what their going through. I’m glad you have such a supportive family, and your grand daughter is lucky to have you in her life.

    • Hello Christina,

      I appreciate your kindness very much. It is absolutely my goal to reach out and share love and support. We all need to know how worthy we are regardless of our circumstances. Every soul has a purpose. I am lighting as many candles as I can!

      Be blessed!
      Ellie

  3. Wow this sounds like an incredibly tough experience. I have many friends and some family members with hidden illnesses. Especially friends who have to use handicap parking that get strange looks because they don’t appear disabled. Just because someone looks healthy doesn’t mean they are. We have to expand our understanding of others’ experiences. Thank you for sharing this interview!

    • I am grateful for the opportunity to share my story.
      Awareness is key to getting people to see beyond their own circumstances. We all need to step out of our day and shift perspective at times. It is awe inspiring what we might see!

      Be Blessed,
      Ellie

  4. Thanks for sharing all of this. I didn’t know about PsA until this post. Lots of information and also inspiration. –Paige Bainbridge (paigebainbridge.com)

    • Hi Paige!

      It means the world to me to know that you have learned about psoriatic arthritis in this article. Awareness is so important. Please follow me on social media if you would like to learn more!

      Thank you so much for reaching out. You made my day!

      Be blessed!
      Ellie

  5. Wow! Fantastic interview! I learned a lot and can totally appreciate the obstacles Ellie has faced. I also had never heard of “google scholar” before! I will have to check it out!

Your Comments Are Welcome!