We are pleased to introduce Diana de Avila. She so graciously accepted our interview request and she is our first interviewee!
Grab up cup of coffee, tea, or your favorite beverage and curl up in your favorite chair. We think you'll enjoy her story - we did!
Question 1: Hi Diana, thanks for sharing your time with us today. Please introduce yourself to our readers who may not be familiar with you, and use this opportunity to tell us where we can find you on the internet and what sites you'd like them to know about.
Hi Akrista, my name is Diana de Avila and I currently reside in Upstate NY with my partner where I am enjoying a life of retirement. I’m all over the Internet doing little ventures here and there. As far as MS endeavors and my desire to reach out to other people with MS, I maintain a blog with lots of information.
I have so many other websites out there … some for a little extra money and some for pleasure. My background in the past (before my retirement due to MS) was as a “Web Architect” and designer. So I can’t seem to keep my nose out of computer code for too long. Besides, it is a great way to keep my mind active. :)
I have a Masters in Education as a School Psychologist and am an Army Veteran (was a military Police officer). Just a couple little tid-bits about me.
Question 2: You have so many different sites and things you're doing. How do you find the time and energy to do them all while living with a condition like MS?
I have always been a “type A” personality (the more MSers I meet, the more I discover this is the norm). While I do not travel to any job daily—I spend lots of time on the Internet corresponding with different people (veterans and MSers are 2 important groups of people to me) and working on my many different Internet projects. I am an easy Google. “Diana de Avila” will show you some of the stuff I work on currently as well as older projects.
The thing about finding the time to do the things I do with MS involves knowing that I don’t HAVE to do anything at all. I don’t have to place extra stress on myself knowing I have to meet office deadlines. I don’t do web development anymore for others because of the time management and stress it places on me. What I do on the web is what I believe is more important for my enrichment and for others out there who are MSers like me.
I’m my own boss. I don’t work on a blog or website if I don’t feel like it. I don’t leave the house if I don’t have the energy. I do martial arts to stay active and like to push the envelope—but that too (I am learning) is a pursuit of patience. Patience with myself is how I maintain the energy and take the time.
I had an MS Specialist who was a neurologist who knew me well and my propensity to work extra hard and push myself up the executive ladder at my job with a large corporation (before retirement). He was the one who ENCOURAGED me to retire in order to maintain quality of life. Relapse after relapse was telling him that the stress of my work was having a negative impact on my MS. I fought it, but I finally retired. My Doctor taught me one thing about the work world that I hold dear: “Nothing is that important that it can’t wait”.
When I feel good, I work on stuff. When I feel crappy with pain or fatigue, I don’t. This simple formula is how I manage my MS and all my websites. It’s how I manage life—and it seems to work for me pretty well.
Question 3: Your interests range from martial arts to reading to music, as well as computers. What is a typical day like for you when you're doing well?
Provided I have had a good night’s sleep (something that has been coming better since a sleep study and a change of medications), I wake up at about 5:30 am to the sound of 5 hungry and lovable kitties. After I have fed them, I do a morning cath, take my morning medications and crawl back into bed for about 3-4 more hours of glorious sleep. Sleeping hard is a new phenomenon for me and it has helped me a lot.
Once I am up I spend time on the computer checking various social networking sites and my email. I sell tea from South America that has become pretty popular (especially among MSers or those with stomach problems).
I fill tea orders while watching a little news TV or a pre-taped episode of “House” or “Wife Swap”. I might watch a martial arts—Hapkido DVD or do some stretching exercises if I am in the mood. Depending on if I have a martial arts class or not, I will try to conserve energy. I’ll work on reviews for Amazon (I am a member of the Amazon Vine Program and do book and product reviews) which means I have books to read..
I love to read but know that reading books has become much more difficult with issues regarding focus and concentration. So reviews can take me longer.
I’ve been more in a martial arts mode than a music mode over the past year. I work hard on developing my martial arts and that martial spirit that doesn’t give up.
I work through typical house chores, do most of my financial stuff online so actually, it is surprising how much of my time is spent on my laptop. My partner and I divide chores. She knows I become extremely fatigued with some housecleaning, so we are able to hire a house cleaner to help us out bi-weekly. A blessing.
I enjoy the company of my cats, exercising through martial arts and discovering new things on the Internet. I’m never bored, that is for sure!
Question 4: You were diagnosed with RRMS in 2002. When did you realize you would have to retire and do you regret having to make that decision?
I’ve already mentioned a little about my retirement.
My neurologist encouraged me to retire in 2004 after I was having multiple relapses of optic neuritis (about 6 of them). My relapses were unrelenting and at the pace they were happening, he was concerned for the quality of my life and the course that the disease was taking. I became extremely heat sensitive and developed a neurogenic bladder that required that I self-catheterize. I also developed an auto-immune thyroid disease in 2004 and this was wreaking havoc on my psyche.
I did not really want to retire—in fact I tried to run my own business and it failed because I did not have the energy to take it to the places it needed to go (it was an importing/exporting business). I was extremely stubborn and my Neurologist ended up to be the wise one. I am thankful to him.
It was weird to retire at first. It makes no sense to be retired on those days when I feel like I can conquer anything (in my temperature controlled environment) and tons of sense on those unpredictable days when fatigue holds me so hard in it’s grasp I can hardly think or move. Or on a day vertigo or pain decide they want to rule me.
As a woman who is pretty stable in her MS right now, retirement was absolutely the right move.
Question 5: Of all your interests, which one gives you the most pleasure? Which one do you turn to when you are having a “difficult” MS day?
During a bad day I find myself turning to the MS community for perspective. I also love martial arts because it can build my mind and body. The Internet is a great way to build community—and feel like you are part of a community especially on those tough days.
Question 6: You seem to have been very successful at making friends, as well as a place for yourself on the web. Many people with MS deal with isolation. What advice can you give to our visitors who may be dealing with isolation?
Isolation is not good. I spent a good portion of time in isolation because of depression and anxiety which was secondary to MS. MS was just the last straw.
I would encourage those during times of isolation to take a hard look and try to discover if isolation is because of depression or anxiety. If possible, try to talk with your neurologist about it and see if therapy and medication would be helpful. Depression is common in MS. I discovered I was depressed and sought help. I currently take medication that helps me to get out of myself and reach out to the world.
In my opinion, isolation is part of a bigger picture and should be examined and tackled as such. I even created a You Tube Video on depression in MS. Depression is very, very common in MS.
Question 7: Do you have anything else in the works or will you just continue to add to your current websites?
I did an interview recently for the MS Society regarding the Wii and the Wii Fit. We talked for about an hour. If I can discover things to talk about in the technical arena—I would like to collaborate with the MS Society.
I move with inspiration—if a new project comes my way through inspiration, I will run with it.
Question 8: We thank you so much, Diana, for your time and would like to leave this last question open for you to share anything else you'd like to with our readers.
Reach for the stars and don’t let MS dictate your dreams. Find new ways to dream and discover new things. Never stop learning and be the best example you can be. Don’t let MS dictate your life and never be afraid to ask for help or admit that you need help. It’s a growth process.
Thanks for giving me the opportunity to reach out to your readers. It’s been an honor.
Thank you, Diana. It was a pleasure.
Please join us in wishing Diana de Avila continued success and health.
Here is one of her videos from You Tube. We thought you'd like to check it out.
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