We recently connected with Jennifer Weaver and have shared our conversation below.
Alright, Jennifer thanks for taking the time to share your stories and insights with us today. So let’s jump to your mission – what’s the backstory behind how you developed the mission that drives your brand?
My mission has been to highlight and support newly diagnosed women in the autoimmune community. I enjoy celebrating them and helping them feel seen and heard. This was sparked by my own diagnosis in 2012 and the loneliness I felt during my journey.
Jennifer, love having you share your insights with us. Before we ask you more questions, maybe you can take a moment to introduce yourself to our readers who might have missed our earlier conversations?
Hi, I am Jen, a 43 year old wife and mom of three young adults and I live with Rheumatoid Arthritis and Palmoplantar Pustulosis Psoriasis, a rare type of psoriasis. After my first diagnosis, I experienced feelings of isolation and being overwhelmed. This has led me to become dedicated to assisting others during their most challenging and frightening moments by answering questions, listening, and virtually holding hands. I created an online community and started a podcast, “My Spoonie Sisters,” through this. I am a passionate patient advocate dedicated to providing support as I listen to women who have been recently diagnosed. I aim to empower these women as they adjust to their “new normal.” I aim to collaborate with and bring attention to women dealing with chronic pain, illness, rare diseases and with mental health issues, and anxiety. I created an online community and podcast to support and celebrate women living with chronic illness, autoimmune, and mental health concerns.
Can you share a story from your journey that illustrates your resilience?
In my early 30s my journey began with chronic pain that started in my left knee. One morning, I went to take the stairs up three flights to my locker at work when I had a sharp burning pain shooting down my entire left knee, causing me to limp the rest of the way. Something did not feel right, but I was not sure why at the time. I assumed I was overdoing it at the gym.
Gradually it worsened over time, and more joints began to follow the trend; my hands were swollen, and my fingers were stiff, warm, and inflamed. Finally, after several months my PCP sent a referral to a Rheumatologist.
I hated the first specialist, to be honest. Finally, I found a better fit for me, and in December 2012, my Rheumatologist diagnosed me with Rheumatoid Arthritis. In 2016 I began having what we discovered to be allergic reactions to my biologic infusions, and in 2017 my Rheumatologist officially added the diagnosis to my chart. This was a challenging time in my life. I was covered head to toe in painful “puss filled sores” all over. These began as little dots that quickly covered large patches forming painful plaques. Over time they would fully develop, drain, blister, and peel away like an onion. My specialist was concerned about infections on the palms and bottoms of my feet because of their severity. My family doctor described what I was going through as a burn from the inside out, causing anything that touched my skin to be sensitive and overly painful. I was embarrassed to be seen as I feared others would quickly judge me and think I was infected and contagious with something. I would never wish such a thing on anyone. The dermatologist was a joke. Each spray, ointment, or lotion they prescribed made my skin feel like it was melting and caused it to get worse. Finally, the Rheumatologist helped me find a treatment that helped to heal my skin from the inside out. Now it is pretty well controlled with my prescription and phototherapy.
Now I live and try to thrive with Rheumatoid Arthritis and Palmoplantar Pustulosis Psoriasis, a rare type of psoriasis. Honestly, I felt overwhelmed and alone after diagnosis(s), which made me passionate about answering, listening, and holding (virtually) hands with others through some of the darkest and scariest times.
You are never alone in this journey. A vast community and people are ready to support you through a new diagnosis journey.
Please remember, even when things feel out of control and at their worst, you matter. So be careful not to mourn the life you once had because this one is just as valuable. You have so much to offer, and your life is worth living and thriving, even in a new way!
Any resources you can share with us that might be helpful to other creatives?
I wish I had known about the online communities and support groups. This is why I now direct those I meet with the ones I have found that fit their needs. For me personally, I have found the Arthritis Foundation and AiArthritis to be fantastic resources.
Contact Info:
- Website: https://myspooniesisters.chewack.com
- Instagram: https://www.instagram.com/gracefully_jen/ and https://www.instagram.com/my_spoonie_sisters/
- Facebook: https://www.facebook.com/profile.php?id=100082928344472 and https://www.facebook.com/groups/586185973433857/
- Blog: https://myspooniesisters.chewack.com/my-spoonie-sisters-blog-page/
Image Credits
https://www.instagram.com/mindfuljourneys/, https://www.instagram.com/ashnic_rawarriorfitness/