My Inspiration
I always found it a little strange when someone says “This person just fascinates me!” Okay, maybe I still do. But then again I never really had anyone I admired or wanted to learn more about until a few years ago.
Most of you have heard my story but for those who haven’t, here is the condensed version. I am a 22 year old blogger who suffers with Interstitial Cystitis, Endometriosis, Pelvic Floor Dysfunction, Anxiety and Depression since 2012, shortly after becoming a newlywed. My husband and I spent months going to doctors, having so many tests, blood drawn (Yes, I still shriek like a little girl every time!) Physical Therapy, counseling, piles and piles of medications; some of which interacted badly with each other and ended up giving me seizures. It made me feel like I was an alien, something the doctors needed to study and find out the most information they can.
Then we started trying to get on Disability. We got it pretty fast compared to some of my other “Spoonie” friends; some of who had to wait years or are still waiting for a response!
When I first got my diagnosis, I was beyond relieved. It wasn’t all in my head after all! But after the initial happiness at finally knowing what was wrong with me went away, I emotionally crashed-hard. I had very little support from friends and family. Then one day I decided I need to deal with this, I couldn’t keep going on the way I was. Depressed. Anxious. Scared. I had horrible hygiene for a while (Gross, I know!) and I was still sleeping all the time.
While I was searching for a support group in my area I came across a group on Facebook called Cure Us From IC And More. The group was started by an amazing woman named Mandy Southerland. She suffers from Fibromyalgia, Osteoarthritis, Insomnia, Migraines, Neuro Cardiogenic Syncope, Restless Leg Syndrome, IBS, Anxiety, Depression, Scoliosis, Bursitis, Tinnitus, Colitis, and Tachycardia.
Some people I’m sure will ask why she fascinates me. Well it’s simple. She has suffered from all those conditions, spent years going to doctors getting test after test, medication after medication and when she finally got her diagnosis, she didn’t let it break her down. She is the strongest woman I have ever met.
She created a support group to help others around her deal with their frustrations and limitations that come with chronic illness. She also has started doing YouTube videos about her illness, questions people ask her, and her ‘normal’ day with chronic pain. You can check out her videos here. She was also mentioned in the newspaper for starting the support group on Facebook!
She does so much for those of us who are struggling while waiting for the test results and even for those who have been sick for years! She knows just what to say and how to say it. I asked her to tell us about one of the ways she keeps the group fun while still being supportive. “I do the different themes each day to keep it interesting in the group. Each day as you have noticed has a different theme, like Medical Monday for example… I try to find something to post that fits along the lines of our IC needs. If I can’t then that’s where the “And More” comes in with in the groups title. We have multiple illnesses so I search for one that I know the group will greatly appreciate, and post it. We all learn so much, not only from my post, but from each other that day as well in the comments bellow from our experiences that pertain to the post.”
She is the strongest person I have ever met in my life. I am so glad I got the chance to get to know her.
How many of you belong to support groups either in your town or on Facebook? I started my own support group for “Spoonies” on Facebook called One Spoon At A Time because there are no support groups in my town and I would really like to help others like Mandy helped me. She has gotten so many of us so much farther forward than we even thought was possible. Thank you, Mandy. We love you!
Reach out, you never know whose lives will be touched by you. You are not alone. You can do this. I believe in you.
