I've alluded to the refreshingly stable state of mind that I've developed over the past several weeks. Through all the medical chaos and uncertainty, I've been trying to stay present; take each day as it comes and remember how many gifts I've been given over the years. One of those gifts has been the phenomenal connections I've made through this blog. When I started out writing this past March, I never expected Loving With Chronic Illness to be read by so many people - let alone people with whom I share a unique, real-life bond. It also never occurred to me that I could meet my readers one day!
And then Betsy came on the scene. I've referenced her quickly on here several times, mostly when she sends me a moving poem, a delicious comfort food recipe, a radiant bunch of sunflowers on my worst days, or a slew of other thoughtful gestures. We met for the first time this past August when she came to New York City! Not only was it comforting to meet someone with the same disease, but we had an amazing evening! We shared some stellar New York pizza, indulged at Serendipity, and Betsy was photographed for Jodi McKee's portrait project (see the September 15th post). Our rendezvous also happened to coincide with my worst period of pain yet and, while it was hard to have someone see me in that condition (especially someone new), Betsy made it okay.
It seems that, despite her battle with chronic illness, Betsy's thoughtfulness and energy are boundless when it comes to the people she cares for. She treats each friendship like a treasure. This is something I deeply admire in her, but it's just the tip of the iceberg. Betsy and I share many things, including our disease. Having only been given an official diagnosis of Spondylitis this past year, Betsy wasted no time acclimating herself to this condition, assembling a trustworthy team of doctors, finding the strength for herself and her family, and soldiering on. To help her cope, she also hasn't let her hobbies - yoga, gardening, home decorating, baking, entertaining, and all things artsy - fall by the wayside. Betsy doesn't just cope...she thrives.
As a mother of two young boys, Andrew (almost 7) and Caleb (age 5) and a wife to her husband Darren for 9 years this month, you'd think she'd have her hands full. But Betsy has also always been an active volunteer - both officially, with programs such as MOMS (Ministry of Mothers Sharing), and unofficially whenever a friend would need a helping hand. No matter what changed around her, this desire to help stayed constant. Although Betsy had always consider social work as a career, her undergraduate degree was in psychology so it made sense to start pursuing her Ph.D. in counseling psychology instead. She decided, however, to take a year off before applying to this graduate program. During that time, Betsy worked at the Mayo Clinic's cancer center as a statistical programming analyst in the cancer center. She recalls, "this was not my cup of tea! i am more of a people person than a computer person." During and after her pregnancy, Betsy first started having health problems and made the decision to resign and become a stay-at-home mom.
Her love for her family and her boys is endless (i.e. today she's putting on an amazing Star Wars birthday party for Caleb). Betsy says she's happy she made the decision to stay at home with the boys, but also "never guessed how difficult being a stay-at-home mom would be for me."
Betsy took a course called justfaith which renewed her interest i pursuing social work. She returned to work at the Mayo Clinic coordinating research for living kidney donors in the transplant center. Again, this validated her desire to become a social worker. Betsy recalls,"the colleagues that I most respected in the transplant center were the social workers." She decided to spend her time preparing for an MSW and enjoying her beautiful boys until they were both in school all day.
The brings us to the present day and Betsy is still kicking butt and taking names. She has now started in on her MSW, taking one course this fall to "get her feet wet." She raves, "it's invigorating to be around people who think and feel like me. i just gave my first presentation last weekend and not only survived it, but thrived at it! loving it!" While Betsy is passionate and hopeful about her future as a social worker, she is still impressively realistic. She understands that juggling a young family, academic obligations, and an unpredictable chronic illness such as Spondylitis wont be easy. She says, "I know that i could flare or progress at any time, so there is uncertainty but i have decided to accept that rather than fear it. " Despite the uncertainty, she is following her heart and - really - isn't that all any of us can do?
Thank you for inspiring me, Betsy, and for being such a great friend. Now I'll let her lovely words stand on their own...
What is the year you were first diagnosed? How old were you ?
Just this past year. I was 31.
What would you tell someone who has been newly diagnosed with your condition and/or a chronic illness in general?
There is hope. There are many approaches to treating this disease. I think having faith in your physicians and care team is essential. No question should be disregarded and you need to seek the treatment approach that you are comfortable with. There are endless treatment and lifestyle choices to explore. Also, the scientific understanding, research, treatments, and prognosis are constantly evolving with this disease. Although I was initially shocked by my diagnosis which sent me into a deep depression, I am now grateful for the diagnosis in that at least I don't have to keep wondering what is going on, and of course treatment designed for the disease you have is always better than treatment for something you don't have! I do have hope that advances will slow the progression or even bring a cure.
Please explain a bit about how your condition affects you (for example: what are the symptoms and what is the hardest part to cope with? Has the disease changed over time? etc.)
Since I am newly diagnosed, I can’t speak for much change over time. I can tell you that I lived for over a year (if not more) misdiagnosed. I was almost put through emergency spinal surgery as a result of my misdiagnosis. Inflammation in my sacrum extends into the lumbosacral plexus which causes shooting pain down my legs along with localized sacral and pelvic pain. I am quite fatigued, which is difficult as a mother of 2 young boys. This has been an emotional roller coaster for me. The most difficult thing is trying to create normalcy in the lives of my boys in spite of the endless appointments, treatments, and therapy.
What are 3 things you couldn't live without?
My beautiful boys, supportive friends, and outstanding physicians.
What are you most proud of?
I am pleased that this diagnosis has not stopped me from pursuing my dreams of completing a Masters in Social Work. I will just need to take my time and be a little more creative with my education.
Where do you get your strength?
I know I need to be the healthiest and happiest mother possible for my boys.
If you could send one message to medical professionals around the world, what would it be?
I can’t slam the medical profession. I live where the majority of my friends work for the Mayo Clinic. I know that doctors, nurses, pharmacists, and therapists are human—they are mothers and fathers—they face adversity in their lives—they do not always have good days. Expressing empathy and admitting to their mistakes goes a long way. The physician who misdiagnosed me with a herniated disc for over a year, apologized that he didn’t catch it sooner or do more extensive imaging. He also was the one who a year later listened to my deep frustration with my first rheumatologist’s approach and referred me to my current one whose attitude and treatment approach matches me best. An open, honest, and empathetic patient-practitioner relationship is beneficial not just to the patient and physician, but also for future patients and advancements.
Thanks, Betsy! You're amazing.
Love,
Maya
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