I’ve never met Valerie personally, but I’ve gotten to know her a bit through her web blog, Professional Patient. Reading about her life and her perspective has touched me and given me a lot to think about, so when she volunteered to answer the Ten Questions for The Phoenix Zine, I was thrilled.
If you’re interested in reading Valerie’s blog, it is also listed under my favourite blogs on the right of my web site. Thank you again Valerie.
Question: Who are your role models?
Answer: When I was a kid, I was always a fan of the smart tomboy types, like Jo in Little Women. As I’ve gotten older, my heroes include my dad (he had such a big heart), strong women like former U.S. Secretary of State Madeline Albright, and Cesar Millan (yup, The Dog Whisperer… his idea of being calm and assertive and in the present moment has helped me through some tough and painful times). And I love Ghandi’s idea about being the change you want to see in the world.
Q: What are your dreams for the future?
A: I want to have kids. I want to get strong enough to go back to work on a near full-time basis (right now I work 8 hours per week). I would like to someday find a way to make a living working with kids and food (a newfound passion of mine). I also want to somehow advocate for improvements in the U.S. healthcare system and its emphasis on intervention (surgery, pills) rather than prevention and rehabilitation. I might like to write a book (I never have the attention span to deal with it). I want to do up my townhouse properly, with nice paint, curtains, etc. It’s still got beige walls like when we first moved in two years ago. I also want to find a way to really be there for my stepmom and younger brothers and sisters (ages 12, 8, and 8). My dad recently died, and they all need extra love and positive adult role models in their lives. Not that there’s any shortage right now, but it would be nice to be part of that picture.
Q: What do you like to do in your spare time?
A: Do medical appointments count? It seems that all I have enough energy for right now is working and seeing the doctor! When I can get my head above water, I enjoy doing tai chi, playing with my dog, cooking, taking long walks on warm and sunny days, and reading.
Q: Are any of your activities limited by your illnesses?
A: Yes. I used to play volleyball and ballroom dance. Having had spinal fusion surgery on my neck (to realign some misbehaving vertebrae), neither is a great idea (I can’t move my head around enough). Contact sports are off limits, too. We don’t want to un-do the surgeon’s hard work. I have to be careful about picking things up, bending, reaching, and lifting, too.
In addition to Marfan Syndrome, I also have Sjogren’s Syndrome, which causes chronic dry eyes, dry mouth, exhaustion, and muscle/joint aches. I need to avoid anything that involves wind/drafts (so no downhill skiing, motorcycle riding, etc…. the wind is too drying). I’m also pretty sun- and heat-sensitive… sitting in the sun on a hot day can leave me exhausted, nauseous, and itchy (I get a sun rash).
Working at my job is going well so far because I am working short shifts (so I don’t get over-tired or stiff), and my employer has given me an ergonomic chair, desk, and inline copy stand that support my neck and back and minimize how much I need to turn my head. When I’m at home doing normal house chores (cooking, cleaning, laundry), I make sure to pace myself, and I modify most tasks to reduce bending/reaching/twisting.
Overall, I am learning to branch out and try things that work with the body I have today, rather than the body I had 10 years ago. I enjoy tai chi as a good, non-stressful way to exercise my entire body.
Q: Where does your information about your illnesses come from?
A: The National Marfan Foundation is an excellent source of information for Marfan Syndrome patients. The Sjogren’s Syndrome Foundation is likewise an excellent source of information about Sjogren’s Syndrome. I do a lot of web research (emedicine, MayoClinic.com, and Entrez PubMed are all excellent), and I get lots of wonderful coping tips from email discussion groups that I belong to (SS-L and Marfan-list). I am also lucky to have an excellent rheumatologist and genetic medicine specialist, each of whom help me a lot.
Q: Does having Marfan Syndrome limit your relationships?
A: I am not as socially active as I might like, mostly because I’m tired a lot. And if I try and do too much of anything (sightseeing, sitting around a restaurant, riding in a car somewhere), my neck still eventually gets painful and stiff. I make up for my physical absences by trying to call more and email more. The really good news is that I am married to a wonderful man, and our relationship is strong in spite of all the pressure involved in having one normal spouse and one chronically ill spouse.
Q: Do you have any fears about your illnesses?
A: Of course. I worry that I will be too chronically tired to be a good mom, and I worry that my weak spine won’t do well under the stresses of being pregnant and then toting an infant/toddler around. I also worry about a possible future in which my current spinal fusion breaks, and I have to have yet another dangerous surgery, or worse yet, they decide they can’t do anything and I’m left in chronic, excruciating pain.
I used to be afraid that my illnesses would interfere with my career success and my marriage and sex life. My health has in fact caused issues in all of those areas (two years of medical leave from work; more than a year of needing my husband to cook, clean, and do all the shopping; limited physical strength taking a toll in the bedroom), so there’s not any fear anymore. Once your worst fear comes to pass, you learn to deal with it. It’s all about making the best of what you have today, not longing for the past or hoping for some miraculous future.
Q: If you’re feeling stressed, what helps you relax the most?
A: Going for a nice walk, doing tai chi, cooking (there’s something wonderfully meditative and creative about chopping veggies), keeping a journal. Talking to friends. And my husband is especially wonderful when I’m stressed… he’s a good cuddler. Physical contact can be so very comforting. My dog is great company when I’m stressed, too… petting her makes me smile even on horrible days. She likes it so much that her happiness is contagious.
Q: What question would you most like answered about having Marfan Syndrome?
A: Wow. How can we fix it? As you age, it gets worse… your connective tissue gets weaker and more stretched out. How can we halt that progression?
Q: What is the most difficult thing about having your illnesses?
A: The most difficult thing is that it is a dominant genetic disorder. I worry that it runs in my family (I’m the first identified case), but I can’t persuade anyone to take it seriously and get checked out. I worry for the health of my aunts, uncles, sisters, and the kids I will someday have (there’s a 50% chance my child will have Marfan). I don’t want one of those wonderful people suddenly dropping dead from a burst aortic aneurysm.
For Sjogren’s, the most frustrating thing is the unpredictable and unrelenting fatigue. Autoimmune diseases really wipe you out sometimes, and on good days, you find yourself reining yourself in and holding back some of your energy because you want to “bank” it for a future day when you might have no energy whatsoever. Trying to achieve that kind of balance can make you crazy. I also tend to get sicker than most people… a cold can turn into a sinus infection that wrecks the best part of a month. Or flu turns into pneumonia. I just recover more slowly than others. When I was in the hospital for my neck surgeries, 80-year olds who had gone through awake brain surgery were going home faster than I was! It can be very frustrating.