4 posts tagged “optic neuritis”

“I choose hope.” An interview with multiple sclerosis blogger Tricia

Posted April 29th, 2013 by

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 34,700 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.

Interview with Dr. Dee Kite, Author of “The Dumbest Things Smart People Say to Folks with MS” (Part II)

Posted March 16th, 2012 by

Dr. Dee Kite ("Coach Dee"), a PatientsLikeMe Member and Author of "The Dumbest Things Smart People Say to Folks with MS"

In Part I of our interview, we learned how Dee came to write The Dumbest Things Smart People Say to Folks with MS, how PatientsLikeMe’s MS Community was a critical part of her research and, most importantly, her “top three dumbest things” not to say.

Today we find out more about Dee’s personal journey with multiple sclerosis (MS) as well as what it’s like to be a life coach to MS patients.  Don’t miss this insightful interview with an MS patient who has focused her life around other MS patients.

You’re a life coach with a specialty in MS patients.  Tell us what kind of obstacles you see your MS clients facing – and ultimately overcoming.

I’ve always found it comforting, as do my clients, to know that we face similar obstacles. Since there are a lot of similarities I’ve developed a three-stage program to give us the structure we need to overcome the obstacles and live our best lives with MS: Regroup, Realign and Reinvent.

First, we’ve got to regroup. Consider Laurie. After her diagnosis there was so much happening: her grief, her family’s grief, recovering from optic neuritis and the steroids, learning how to give herself injections, deciding who she should and shouldn’t inform about her illness, trying different medications for different symptoms, dealing with the Dumb Things people said to her.

For Laurie, for most of us, this was a traumatic, overwhelming time. We dedicated an entire coaching session to regrouping. In other words, understanding every new obstacle in her life and creating a plan to take care of it. It wasn’t easy, but I’d been through it too, so Laurie knew she could depend on me to see her through. For my clients it’s a kind of “getting your feet back on the ground” stage, where I teach them how to move out of “overwhelm” to a sense of control. It’s a skill they can use for the rest of their lives.

In the first stage we’ve made a conscious effort to understand what living with MS means for us. In the second stage we realign to our new reality. The sooner, the better. When your car starts pulling or drifting away from a straight line, you know it’s out of alignment. When we begin learning to living with MS, we’re out of alignment. Without realizing it our minds drift to the dreams and the expectations we’ve always had. We’ve got to realign the way we look at the world, to let go of all our dreams and expectations in order to clear a space for stage three.

For Dave this was particularly challenging. Like Dave, often my client’s “story” has blocked his or her ability to realign. When Dave and I began coaching he focused on how this was “not where I’m supposed to be at 40 years old.” He focused on all the terrible things his ex-wife had done to him since the diagnosis, on all his mistakes, on everything that had already happened. He needed to realign. Simply put: don’t look back. I guide my clients to make a seismic shift by taking power away from their past.

When my clients have regrouped, they understand their disease and what needs to be done. When they realign, they let go of the past. In the process of realigning they learn that the quicker they let go of yesterday, the faster they can reinvent their new lives with MS…and the faster I help them create their new dreams and plans for a great life. This is much more an opportunity than an obstacle. And there is one tool my clients either love or hate but either way they’re always amazed at how well it works. They start living by this rule: “Don’t complain.  Ask for what you want.”

What’s the most important lesson you’ve learned in your own MS journey?

Dr. Dee Kite ("Coach Dee") with Her Dogs, Trixie and Coconina

That I had to change my definition of success. Before I was diagnosed, I had a rather cookie-cutter definition of success, with my plans lined up like a stack of dominoes. I’d get married, have kids, live in my dream house and be a strong, independent woman. I’d be a great wife, mother and professor. I’d entertain, have lots of friends, stay in great shape, play tennis. I had so many dominoes lined up that I could have tiled the kitchen floor.

And in slow motion, each domino crashed into the next. I’d get so tired that if I were starving and a plate of food was across the room I wouldn’t be able to get it. No energy meant no children, no travel, no job and no dinner parties. My herb garden shriveled. No more tennis because after a MS exacerbation I couldn’t see the ball. Stay in shape? I was so depressed I ate myself into stretch pants and [my husband] Scott’s t-shirts. Not such a great wife, family member, or any other role I’d envisioned. For a long time I just tried to stay sane and protect my energy level. It was not pretty.

I had to let go of my dreams and redefine success. Now it isn’t about the destination, it’s about the journey. I have had to become more like a pilot. While the flight plan is essential, the pilot has to continually monitor the weather, wind direction, wind speed, and make corrections along the way. Eighty percent of the time it’s about gauging the situation and making corrections. Success for someone like me who is living with MS, an unpredictable and debilitating disease, involves a lot of corrections to bring myself back on course. It’s been one heck of a flight to get here.