Hurry up and wait has become the tireless refrain running through my brain as of late, ever since I restarted the deep-dive investigation into a medical mystery that has haunted the lion’s share of my adult life. You’d think that this 20-year adventure would have fully schooled me in patience. Yet, while this arduous journey has absolutely made me more resilient, relentless, and resolute, being patient is unfortunately not yet of my great virtues. Perhaps that is one of the reasons that I have never given up the search for real answers and better treatments, for deeper healing and enduring recovery.
I don’t know if my patience is in especially short supply right now because I fear that maybe after all this legwork, the solution to this health puzzle will elude me once again. But I think it’s rather that I feel that answers might finally be just around the corner, and I can’t wait to reach them. There’s an entirely new sense of eagerness and urgency running through my veins with every breath.
Hurry Up And Wait My Way to Healing Recovery
Hurry up and wait is the mantra I will be repeating to myself for the next three or four months. It is what I must continue to do until more tests have been performed, all results have been submitted, and multiple medical assessments and analyses have been made. Yet this waiting game is certainly not one I haven’t played before. This whole past year and half, really, has been a master lesson in patience.
Ever since a slurry of medical tests and neurologically stimulating trainings put me in the biggest neurological crisis since I was first diagnosed with the involuntary movement disorder called dystonia a decade ago, I have been compelled to learn to view sensory deprivation and rest as active and essential components of recovery. I have had to treat my body with the utmost reverence and tender loving care for long months on end. In the process of relearning a new normal for my existence, I have admittedly suffered rebound effects from overdoing it every now and again. But, in general, I have regarded this hibernating phase in my life as absolutely vital, and it’s a part of the healing process to which I have committed fully.
When it was time to lie down in darkness, I stayed in bed and left off the lights. When it was time to still my mind, to settle my quaking body, and to ground and center my soul, I meditated. When it was time to nurture and nourish my spirit, I made art. When it was time to retrain my neurological system, I moved my body with deliberate intent. When it was time to rest again, I returned to the couch. And now that it is finally time to nudge the needle forward on healing and recovery, I am once again ready the jump through the hoops and leap the hurdles standing between me and wholly vibrant wellness.
Hurry Up And Wait–For Myriad Tests and What They Might Uncover
Late, last summer, I picked up the pace once more to get my second round of DUTCH (Dried Urine Test for Comprehensive Hormones) testing, then waited for my endocrinologist to weigh in after she ordered multiple follow-up serum tests last fall and early this year. When it became clear that my adrenal dysfunction couldn’t be properly addressed by Western medicine alone, I jumped to collect a blood spot sample for a food sensitivity test, with the hopes that this report would be back around the same time as the results from the extensive lab workup my new naturopath had ordered. When those tests revealed that an autoimmune flare up was in the midst, I rushed to get a more detailed assessment of rheumatic disease antibodies before an initial appointment with a neuro-immunologist, recommended by my primary neurologist at Mass General Hospital. After having my first visit with her this past Tuesday, now is time to hurry up and get additional tests and invasive procedures scheduled and completed in Boston before October. If I wasn’t already frenzied and fatigued by physical ills, all of this hurry up and waiting deal would have knocked me out flat.
What drives me forward is confidence in the competence of the specialists I am currently seeing and relief that my body is finally being properly tested for several conditions that have never been adequately assessed or even considered before. A skin biopsy will soon be performed to assess small fiber neuropathy, since previous EMG and nerve conduction tests failed to explain the numbness and tingling; the hypersensitivity to touch and temperature; and other symptoms of the autonomic nervous system in distress. And ten years after a perfunctory EEG was performed, I will be monitored over a couple hours during a sleep-deprived electroencephalogram test, which will offer a much more accurate gauge of the heightened, electric activity of my brain in a fatigued and distressed state–including, God help me, while sleeping. While this whole procedure threatens to drive my already taxed nervous system into sympathetic overload, my prayer is that I will recover from that sufficiently enough in the two-and-half weeks between the EEG and my next diagnostic test. This brain MRI will hopefully make sense of previous scans, which showed the same structural abnormality, as noted by two, separate neurologists, yet was subsequently dismissed by two other specialists as diagnostic error. My hope is that next month’s scan will confirm the present state of my brain, one way or the other.
Most revelatory, perhaps, will be the lumbar puncture (AKA spinal tap), in which a hollow needle will be inserted into the spinal canal to remove a sample of my cerebral spinal fluid. CSF is produced by the lining of the ventricles–four, interconnected cavities in the center of the brain–and it cushions, nourishes, and balances. This fluid can be measured for pressure and analyzed to diagnose–or, conversely, rule out–a myriad of conditions, from certain types of cancer to meningitis or encephalitis to multiple sclerosis or other inflammatory conditions of the nervous system. I was initially scheduled to get a lumbar puncture in 2010, until my neurologist at the time canceled last-minute, out of fear that trying to put a needle in my spine while I had serious muscle contractions and contortions could do much more serious damage than good. It was probably a good call at the time, but not having one performed all these years has left a lot of unanswered questions and might have significantly delayed a critical diagnosis that could have been treated correctly years ago. Now, I have a much more seasoned and confident neurologist, and I am on better medications to manage my twists and turns. Soon, I hope, we will have a host of clues about what is really going on throughout the systems of my struggling body.
Wait, Wait, Do Tell Me!
Our hope is that the result of all these tests will lend to further identification and explication of what is actually going down in my corporeal form. More complete answers open up new options for potential treatment. New (or renewed) treatment options promise a swifter and more complete healing, especially in conjunction with an anti-inflammatory diet and more active lifestyle. With so many brilliant physicians, diagnosticians, and lab technicians as my fellow detectives on this search this time–along with the tremendous support, infinite encouragement, and boundless love of my husband and family–I am more than willing to push through the harrowing days that will accompany these investigations to get to the other side that shines with such great promise.
During this next week and a half, I await the results from a serum antibody evaluation of potential inflammation of the brain (though, ironically, the longer it takes for those results to come back, the more likely at least a few answers as to what’s ailing me will be specified sooner than later). At the same time, I will be doing everything I can to replenish my body and to mentally prep for my pending EEG and a first appointment with a recently referred MGH rheumatologist. The sooner I step up and get the rest of these procedures scheduled and completed, the sooner I can get back to resting at home and fully recovering from al the medical mayhem.
I know that stressing over these next couple months ahead will not yield answers any more quickly. Failing to pace myself will assuredly wreak more havoc in my body from which it will take much longer to recover. Now, it is time to hurry up and let go of my anxieties and expectations over the unknown future. The last couple years have taught me how to truly get grounded, stay still, and wait with peace in my heart. I will mindfully walk this road one, small step at a time, ambulating intentionally into the next chapter ahead. It’s time to get back to living fully in the present, for I know that right now, right here is the only moment that really matters.
i will hope (and for me pray) along with you
Thank you! I heartily welcome any prayers sent my way. <3
Rebecca Hart says
I appreciate your updates, as one who suffers from dystonia and has been through many practitioners and tests.
Thanks so much for reading my exhaustive list of what’s next for me, Rebecca. How are you faring currently on your dystonia journey?
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handwritten by the author.