In our “Spotlighted Blogger” series, we’re talking with people who are sharing their personal health experiences to help raise awareness of disease and change healthcare for good. For our latest interview, we’re talking with Tricia who’s writing about her journey with multiple sclerosis (MS) on her blog Love My MS Life. Some of you may know her on PatientsLikeMe as jakesmama. Check out her full interview below where she talks about the impact of connecting with others and why it took 11 years to get a diagnosis.
Why did you start blogging about your journey with MS and how has the community reacted?
I started blogging about my journey with MS last year. I’ve had MS for over 20 years and have been an avid fundraiser, MS Champion and MS Advocate ever since. My goal was/is to share my experiences with others living with MS to hopefully inspire and encourage them, while “telling it like it is.”
The reaction has been wonderful! When I hear people tell me they relate to my experiences because they “get it,” it makes me feel like I’m doing something good for others that share this disease.
In one of your posts, you mention that your first symptom started 11 years before you were officially diagnosed. Can you tell us about that?
When I was 13 years old, I had the virus mononucleosis. One afternoon the vision in my left eye became blurry but I disregarded it. The next morning I woke up and the vision was basically gone in my left eye. I was dizzy, nauseous and was taken to the hospital. The doctors called my bout of optic neuritis a “fluke thing” and I went home. During my high school years I would have bouts of optic neuritis in my good eye and would be given oral prednisone to bring the swelling of the optic nerve down. It wasn’t until my son Jake was nine months old that my ophthalmologist sent me for an MRI. This was 11 years later and when I was diagnosed with MS.
What’s it been like to connect to others with MS on PatientsLikeMe?
A friend of mine told me about PatientsLikeMe years ago. It’s a great way to connect with others living with MS, to compare symptoms and offer suggestions. I use it as a helpful tool to track my disease progression, keep notes, and learn from others.
What’s one bit of knowledge no MS patient should be without?
One of my favorite quotes is, “Never, never, never give up,” by Winston Churchill. I believe all patients living with MS struggle daily whether we can see it or not. I choose to have HOPE for my future and HOPE for a cure!
If you’re living with MS, find others just like you in our growing community of more than 31,000 MS patients on PatientsLikeMe. Learn what they’re doing to manage their condition with symptom and treatment reports and share your own experience with a personal health profile or in the community forum.