The current chapter of my imperfect journey involves countless doctor visits and a long road that began in 2008. At the time, we were living in London for work, and while standing in the drizzling, freezing rain during a middle school cross-country track meet, my fingers turned fish-belly white and lost feeling for almost two hours. To my surprise, a borough doctor diagnosed me with a disease I had never heard of: Reynaud's Syndrome [an incurable vascular disorder that causes sporadic, intermittent interruption of blood flow to the extremities, usually brought on by cold temperatures]. Reynaud's isn't life threatening, though, so I rejoiced that there was a "simple" explanation for the weirdness, bought some nice gloves to keep my hands warmer, and promptly returned to my normal, crazy life, trying to maintain a family of seven for a year in a foreign country.
About a month later, more serious problems began. I started having random numbness, tingling, pin pricks, stabbing pain, and a constant feeling that ants were crawling on my arms, legs, and face. Imagine feeling like hundreds of ants are crawling all over you ALL OF THE TIME and then throwing in some random tingling, numbness, or stabbing pain intermittently on random body parts just for variety. It can make you a little crazy... :)
[Note: Before continuing you have to understand that I also have other conditions that I have just learned to live with over the years that already cause various levels of pain and/or irritation/debilitation. I was diagnosed with my first interesting disease--degenerative disc disease--when I was a freshman in college. After seeing a doctor for excruciating back pain, I was told that my spine was fragmenting, my discs were disintegrating, and I would definitely be in a wheel chair by the time I was 35--not very cheery news for a college freshman. This hasn't happened (thankfully!), but it does cause me pain on some level pretty much all of the time, and there have been times when it has been truly debilitating. My sophomore year I was diagnosed with patellar tendonitis (I inherited bad knees from my father) and acid reflux disease (NOT good for a singer), both of which were thankfully minor and could be controlled with physical therapy and medication if I could stand the nausea. My junior year I developed a huge stomach ulcer, etc. You get the picture. Since college I have been diagnosed with bursitis in my hip, restless leg syndrome (which wakes me up several times a minute when I am sleeping), sleep apnea (which wakes me up while I am attempting to sleep through the restless leg syndrome, the combination of which makes me exhausted all of the time), and polycystic ovarian syndrome (which is a whole other story I will save for another post...). To keep it interesting, I keep developing random other minor conditions like plantar fasciitis which are incredibly painful for a time and then go away with treatment. I also randomly grow cysts which have to be removed surgically, each one damaging the nerves around them and leaving lovely conversation-starting scars which have actually scared small children. Let's just say I look normal (ish) and awake (ish) to the casual
observer, but I never truly feel well. Feeling rotten is just my normal;
it means I'm awake, but it probably also means I'm still breathing,
which is good. :)]
So back to the numbness/tingling/crawling/stabbing of 2008. We were moving back to the States soon, so I decided to just wait and see a doctor back home about the ants. That doctor visit turned into a barrage of testing and visits to specialists (neurologists, rheumatologists, etc.). After several months, thousands and thousands of dollars even after insurance, and very few results, I was told that their best guess is that I have MS, and we would simply have to wait for my symptoms to worsen or for plaque to start showing up in my brain. Joy! They also put me on various medications that did not help, and I finally gave up, just deciding to live with my new normal. It does become background noise after a while.
Remember, tingling/pain + other random symptoms of varying degrees of unpleasantness = alive. :)
Change is constant, though, and normal has a way of evolving. My thirteen-year-old daughter broke her arm ice skating in December and ended up seeing an orthopedic surgeon. Because the doctor found some genetic anomalies in her bone structure (yep, passed on by me), I ended up being his patient, too. First, we addressed a negative ulnar variance [a very rare genetic condition in which the radius and ulna are not equal lengths and which causes interesting side effects], and I ended up in surgery for a cyst in my right wrist almost the size of my wrist. Then this week I went in for pain in my left wrist, and after a second MRI, I am officially the proud owner of "new and interesting disease of life that I didn't know existed until I was diagnosed with it NUMBER TWO." It's called Kienbock's Disease [a rare debilitating disease in which bones in the wrist basically die due to interruption of blood supply, leading to chronic pain and dysfunction], and it's already pretty advanced (stage 3). Apparently the doctor wants me to pay better attention to the pain signals my body sends me and go in more often to be checked out. But he did chuckle when he told me that I either completely won or totally lost the genetic lottery, depending on how you look at it.
In my head, I keep picturing an editorial-style cartoon: cartoon me is standing in line in heaven, an angel asks me which disease I'd like to
learn from in this life, and after considering all of the options, I reply "oh, just
give me a whole bunch of them so I can have the full experience."
"Okaaaaaaaa-aaay," he says...
You want to know the weird but strangely cool thing about it? Since my normal has been various levels of pain and bizarre physical occurrences for so many years, the new developments are kind of just, well, interesting. I've come to the point in life where I really feel like "bring it!" I get to choose to be happy regardless of what strange thing is happening to my body at any given time, and I am acutely aware that it could be significantly worse. Even though I stood in the "multiple non-debilitating diseases line," so far I haven't stood in the "completely debilitating" or "life ending" lines, and for that I am deeply grateful on a daily basis. I am able to get out of bed every morning and walk in order to serve the people I love, and the other symptoms/pain that accompany my various diseases and disorders come and go and are seldom all present at the same time (whoo hoo!), somehow I get enough sleep to survive, and my wrists are working well enough at the moment for me to write this blog post. I have a family that I love, five miracle children I am not statistically supposed to have, and I am striving every day to develop a great friendship with my Savior. And I know that the grace of my Savior is sufficient for all things. What's to complain about?!!?
As I consider how to move forward with this latest development, two quotes keep coming to mind. The first is by Annette Funicello: "Life doesn't have to be perfect to be wonderful." The second, and also my favorite, is by Jeffrey R. Holland: "No misfortune is so bad that whining about it won't make it worse." :)
I do not have to be defined by my difficulties and challenges, even when
most of them are physical; I get to choose whether to respond with
grace or to sit in the corner and rock and be angry at God. I choose
grace.
