Google and Google Scholar have gotten way too much traffic from me these past 8 years of battling serious illness. It’s time to spend less time there and more time dwelling in the presence of my Lord, Jesus Christ.
And so I shall.
Facebook has been my link to the world outside the comforting yet speechless walls of our home when there were no more folks to call on the phone. A recent relapse in convulsive episodes brings a state of mental fog afterwards. While not a true “post ictal” phase of an epileptic seizure, it is still a time when goal-directed activity (as I used to call it when working in my profession of occupational therapy) simply does not occur. Reading short phrases while lying in a passive state is about the best I can do. Well, except when my beloved is nearby and comforts me dearly. But I follow way too many disease-oriented groups on Facebook so spending time there is not really a break from life, a connection to the living, or even as entertaining as it once was. It’s time to spend less time there and more time dwelling in the presence of my Lord, Jesus Christ.
And so I shall.
Endless planning in my mind or on the calendar on my smart phone has increasingly become a source of frustration rather than relief or even hope. Focusing too much on the future brings tomorrow along too soon, robbing me of the gifts all around me in today. I simply don’t know when-or-if I will be a candidate for parathyroid surgery now that I have a diagnosis that explains so very much of what is wrong with my health. I simply have to wait for others to review my case and call me. Steve and I will adjust our schedules and lives accordingly. It’s time to spend less time there and more time dwelling in the presence of my Lord, Jesus Christ.
And so I shall.
Gardening has become both a hobby and source of identity when my role as an Occupational Therapist went away. I am grateful that a couple of months of better health in the spring allowed me to largely finish a rain garden project in my community as a Master Gardener. My volunteer work continues as the Assistant Editor of the quarterly publication, Canoe News (of the United States Canoe Association), and Editor of the monthly newsletter, Across the Fence (of the Master Gardeners of Purdue Extension, Allen County). Often these are difficult to get done; somehow with the Lord’s grace we do. But I am struggling to keep up with our own landscape that requires daily maintenance and some brute strength that is tough for me to do these days. The degenerative changes in my spine are not going to go away so what will I/we do about all of those flower and fruit and vegetable beds out there? Keep watering for now, pray about it, and realize that it’s probably time to spend less time there and more time dwelling in the presence of my Lord, Jesus Christ.
And so I shall.
Gee, suddenly I feel less stressed about things. Thank you Jesus. You care about these issues in my life and in those of the Gentle Readers out there too, holding every one in the palm of your hand, the love in your heart, with the promise of your return. Things will work out according to Your Divine plan for our lives. In this we can rest tonight.
Life never ceases to be an adventure if that is the perspective you choose.
Perhaps an underlying theme of the Hope Beyond blog when it began would have been, “the plot thickens.” Or “deadens.” Flash forward about 7 years since my first blog in August of 2012. At my current stage of recovery from serious illness and a turn for the better-but-not-done-yet, I’m going to attempt the theme of “a new adventure awaits.” How is that for positive thinking?
I haven’t written in awhile. Since March of 2019, there are more moments of functioning better each week and I am taking advantage of them. There are also more very long naps of which I am forced to take advantage as well! The the new direction in my healthcare of getting off of thyroid medication created some problems then had an unexpected turn when parathyroid issues were discovered. My labs in both and related camps are all over the place, making for a Peter Faulk’s, Columbo-style of in-depth investigation raise more than one eyebrow of intrigue. Could there be another causative factor to consider in the convulsive episodes, requiring its own investigation? Yes, it appears so. Sure could be possible that the thyroid nodules, albeit shrinking, hid parathyroid tumors that are additional culprits in serious illness. Both hyper/hypothyroidism AND hyperparathyroidism can explain my clinical presentation. It appears that I am dealing with both. Who knew?
Well the Lord knew all along, the factors and their purpose for a nearly 8-year derailment in life as I once knew it. I am beginning to see that everything I have learned to date has NOT been wasted. I would not be able to respond as quickly to new information if there were still dozens and dozens of other medical conditions to rule out or address. I would not have a deep compassion for those suffering chronic illness today. My faith would be weaker and very likely my marriage. I could go on.
Very few folks have had as many medical tests that I have had, even in the community of persons dealing with chronic illness. Some folks stop after medical professionals label you with depression or anxiety. And if a person persists with extensive testing, very likely it’s peppered with questionable, even dangerous energy techniques akin to quackery. Thank the Lord that I didn’t spend very much time with energy medicine. He let me see the demonic influences and/or lack of science then helped me get away quickly thereafter (e.g. Rife treatment using sound and light frequencies hurt me badly.) Other times my Jesus simply closed the door to a promising yet deceitful avenue even before I was tempted to get near it (e.g. tai chi and yoga). This was very difficult at times when I felt desperate in my personal hell or conversely, when the testing and treatments were recommended by my brothers and sisters in Christ. I simply had to decline with blind faith even if that decision appeared to prolong my suffering in their eyes. Very tough road indeed.
Today I welcome the new answers with more of a sense of adventure than fear. Will I need neck surgery if a parathyroid adenoma is discovered? We are not sure yet. My labs don’t fit the typical profile and I have been in that camp dozens of times before. But when 1) both cardiovascular AND osteoporosis can be related to both thyroid and parathyroid anomalies and 2) calcium trafficking/dis-regulation problems can contribute to neurological symptoms, then it seems logical that both would need to be addressed. Incredible. Separate body processes in which anomalies can be the root cause of disease in the 2 different organ systems. And to think that this new adventure would have never happened if I had not gone to Mayo Clinic in February looking for answers about autoimmune disease. But there is no AD. Maybe not even a Functional Movement Disorder. Just another new answer to a question I did not ask. Holy cow! JJ
Psalm 34:8 New International Version (NIV) 8 Taste and see that the Lord is good; blessed is the one who takes refuge in him.
Six years ago tonight began a journey that has tested me in every way possible; brought me closer to my Lord and Savior, Jesus Christ, than ever before; deepened my love and gratitude for my beloved Steve; and helped me to grasp the incredible resilience of the human body/human spirit. Thank you Lord for your sustaining grace through it all!
Rather than go into the details, I will simply refer you, Gentle Reader, to my story here. Briefly, I got deathly sick with viral hepatitis after kayaking in a local reservoir and never fully recovered. Seizure attack episodes began on a daily basis within a couple of months and have yet to resolve. This serious illness has had many names, required extensive treatments at considerable expense, and rendered me unable to work in my profession of occupational therapy. I miss working. The social isolation, sense of loss, grief, and various disabilities have changed my daily life considerably. Without my faith in Christ I would not have made it this far. I do have hope for a better tomorrow which brings me to my quarterly treatment update as follows:
Recent lab tests found extremely high pesticide toxicity. I immediately increased Far Infrared Sauna and various detox treatments until I could meet with my functional medicine Doctor. Now after two intense weeks of exhausting research, medical appointments, and enough follow-up that would make the great T.V. detective Colombo proud, I am hoping that my Doctor’s office has processed a referral to a State Toxicology Center. I found a neurologist that specializes in seizures related to toxicity and I want to see her as soon as possible!
In the meantime, I try to function as best as I can. Sadly the very difficult titration of a new medication either keeps me up most nights or wakes me up with breakthrough tic attacks every two hours. (I still spend most weekends in and out of bed with sickness.) The focus now is to inhibit acetylcholine that we hypothesize is causing the seizures because of damage from organophosphate poisoning (OP). Acute treatments for OP are well known but not for long term effects; we simply do not know how long I have had this toxicity. The medication is an interim measure. I am wondering if various Lyme, fungal, viral, and even parasitic infections have sequestered OP like these organisms can do with other toxic agents. We know that detoxification can increase feelings of sickness called “herxing” (from release and recirculation of mycotoxins for example) when we either detox too fast or our liver or kidney pathways are blocked. I now use bitter herbs with various binding agents in a “push-catch” protocol that helps to better tolerate the process.
So here we go again with another new treatment direction! At least this time I have concrete lab values to help explain what is going on along with a new, promising treatment direction. In the meantime I’ll be hanging out as the “chick in the box” (as Steve says) at about 124 or more degrees, trying to literally “sweat it out” in our sauna. There will be no anniversary celebration per se for enduring six years of hell albeit with some sweet moments sprinkled in here and there. There will be humility though as I try to be a godly steward of this journey my Lord has entrusted to my care. I do have hope for a better tomorrow. That is where this blog began 6 months into this 6-year journey and I hope that is where I will remain beyond that too.
Thank you for sharing the road with me Gentle Reader. When I see my stats ticker go up a notch my spirit gets a little lighter, knowing you are there. Thank you.
Enjoy the sweetness and reality of warmer weather throughout the United States and beyond from fellow blogger and friend, Sherri! Looky here for more on this subject. JJ
Each spring brings a new awareness to life. As my body adjusts to the weather and becomes more alive without pain, I enjoy hearing the birds sing as they do their morning chores. Of course, I sit with a cup of tea these days on the chaise lounge brought home from our cottage and listen…