In early mid-May, 2016, after googling "isolation and disability," I found an online community, Inspire.com, which is associated with the Invisible Disabilities Association. So far, the community seems a pretty good fit for a place where I can share, as I feel like sharing.
Last week I posted the following on my profile page for that online community. So, I'm gonna post it here, on toss & ripple.
Since I posted it as a profile on a forum regarding disability, the content consists of health challenges and treatments, present and past.
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In the spring of 2011, within 6 weeks of taking a generic form of oral Lamisil (drug name: terbinafine) for a long-standing toe-nail fungus, I developed nerve damage in all my limbs and extremities simultaneously. I have since learned I'm not the only person to develop nerve damage while taking terbinafine. I was also going through other life-stessors at the time of onset which may too have been a factor.
In the spring of 2013, two years and eight medical professionals and a few diagnoses later, the condition was finally diagnosed correctly (I hope) as cervical and lumbar radiculopathy, aka polyradiculitis, which is a rare type of peripheral neuropathy that is typically associated with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) or Guillain-Barré Syndrome (GBS). I have neither of those two diseases.
Polyradiculitis can sometimes mimic ALS, which has been the case for me. Muscle loss has been significant. Among other adjustments, I've had to learn how to move my body differently, calculate my body movements, and calculate energy compartments almost every moment of each day. (I know folks here on Inspire can totally understand that.) It has been one of the hardest things (if not the hardest) I've ever had to learn to live with and accept.
The nerve damage has slowly spread through my body to include legs, feet, arms, hands, mid-back on either side of my spine, neck, and jaws. I've also developed shortness of breath and possibly orthostatic hypotension. I may also have a yet-unidentified autoimmune connective tissue disorder. At the end of July, 2015, we discovered I had B-6 toxicity which can cause and exasperate nerve damage. (I was only on 4 milligrams of pyridoxine B-6 at the time.) In April, 2016, we discovered my iron was on the lower end of the normal scale, perhaps an inadvertent result of diet change in August, 2016, to lower my B-6 level. (I was successful at getting my B-6 back into normal range which has helped improve my arm function.)
I have been on various medications and utilized alternative approaches since the onset, some of which I had utilized in previous decades living with a different set of chronic health conditions that I actually overcame. (See below at the **. ) To help me manage this new normal, I've drawn upon those past decades which include not only my own health, but also helping to care for my father after he was in an automobile accident that rendered him a quadriplegic until his death almost 13 years later.
Currently, as of May, 2016, I receive a steroid lumbar epidural every 12 weeks and steroid cervical neck shots every 6 weeks. These have helped to keep me from becoming bedridden. I take low-dose, daily prednisone (since July, 2011); hydrocodone and generic Xanax (alprazolam) occasionally as needed; daily cannabidiol therapy including Charlotte's Web Hemp Extract; nutrition, including herbs and supplements; hot-stone massage; stretching exercises; journaling and bibliotherapy; movie therapy; humor; mindfulness; listening to music; building good memories and recalling them; spending time with pets; communing with nature; and riding my bike in nature. (This link provides a partial timeline since the onset in 2011 through December, 2015: Timeline since 2011 and the onset of nerve damage... .)
A year prior to my current illness, I had taken up backpacking with a plan to flip-flop-thru-hike (in two sections) the 2180-mile Appalachian Trail. I can no longer backpack; nor can I hike very far. But I discovered I can ride a bike much more easily than walking. I mainly cycle on local Greenways and rail trails. Among other benefits, cycling provides me pain relief, fresh air, communing with nature and myself, exercise, and an occasional chance-meeting with other abled-differently cyclists who have also found refuge on two wheels (or three) and metal. My bike's name is Olivia. We are partners! :)
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**From 1981 through 2005, I lived managing severe asthma; numerous bouts of pneumonia; multiple sinus surgeries (1984, '85, '86, '96); environmental, chemical, food, and inhalant allergies; hives, welts, and various skin disorders; systemic candida; depression; anxiety; mood swings; chronic fatigue; body aches; mini-migraines: mercury toxicity; a herniated disc; and a myriad of other symptoms that go with an over-responsive and depleted immune system.
Through those years, I was pumped with intravenous drugs; swallowed or inhaled a host of pharmaceuticals (including 1000's of doses of steroids); was pricked with needles 100's of times for various reasons; received a myriad of allergy tests and antigens including one experimental treatment known at the time as Enzyme Potentiated Desensitization (EDP); had my insides scrutinized through dozens of x-rays and other scans, an MRI, and an abundance of lab work; received oral chelation therapy, osteopathic and chiropractic manipulations, colon hydrotherapy, massage, physical therapy, acupuncture, oral and intravenous vitamin/mineral supplementation, and psychological counseling; used various approaches of mind-body-energy work, herbs, low heat saunas, coffee enemas, homeopathy, strict dietary protocols, prayer, affirmations, "claiming my healing," yoga, meditation, journaling, and bibliotherapy. Some of those approaches were helpful, some weren't. A bit over two decades later, as previously stated, I gained back my health. (Here is a link to a narrative about those years: Seeking Life Along The Way [Addendum].)
In 2008 I had full-hip replacement surgery. Ends up, I received a replacement that was put on recall. Thankfully, mine is doing okay so far. My hip degeneration was probably a result of prednisone and steroid use to keep me breathing through the previous decades with asthma.
In December, 2009, I contracted MRSA which erupted 4 different times over the following 5 months. "Tap on Groot" (my phrase, instead of "knock of wood"), I haven't had MRSA since that time.
Then in 2011, I developed the nerve damage, as stated above.
In February, 2013, I had carpal tunnel surgery.
I maintain several public blogs. My main blog is toss & ripple.
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