Redefining Self
Preface: Many pages on this site still address “fibromyalgia” or “myalgic encephalomyelitis” as my illness tho I was diagnosed in June 2015 with CHRONIC LYME DISEASE. Please read beyond the diagnostic labels and glean what you can from my efforts to help you.
Some parts of what you are about to read may not sound at all like “encouragement,” but please hear me out (and visit the next page, “What I Did Today” to see some brightness in my days.) I’ve learned many things from fellow sufferers of Lyme Disease, Myalgic Encephalomyelitis and Fibromyalgia. Watch how I continue to fight (on the days that I can) and how I cry out for help from those who really have something to offer. Watch how I just get by, an hour at a time, a day at a time, until I feel better. BETTER WILL COME; you will have some relief, some better hours or parts of days or weeks or months. Above all, know that, by telling you the truth, I’m showing you love.
Remember that YOU, like me, ARE NOT ALONE. We have much to learn from those with Lyme disease or other crippling chronic conditions who have walked this horrific terrain before us. While none of us reacts exactly the same to this dragon, those of us who have severe debilitating cases as well as those whose bodies aren’t so disabled have a lot to say, a lot to teach. Thank God that MOST people will never have to live like this and Thank God, too, for those who do live with Lyme Disease who want to help others. That’s BRAVERY.
The first 1 1/2 years of the” fibromyalgia” attack, for me, were spent bedridden/housebound most of every day. After the Guaifenesin Protocol (see info under “fibromyalgia treatment” page) really started giving me hope of some sort of recuperation, I tried with all my might to hold on to my professions of nursing and teaching in the simplest, most Fibro-friendly way possible. My employers were gracious in giving me flexible schedules and any accommodations possible; my nursing supervisor even provided me a room where I could sleep on site when off shift, rather than have to commute the long distance/difficult trek for my two assignments per week. Yet, after only six shifts, I had to resign. Many years of not being able to work in the nursing field later, I let my license lapse. That was too difficult to describe; the grieving over losing my careers took place over years of trying trying trying and finally accepting reality..
When I received a REAL diagnosis in 2015 of chronic Lyme disease, (and after the shock of it settled into acceptance), the hope in possibility became alive again. Having known 2 specialists in the field (a RARITY!) who made measurable, positive differences in my physical being pushes me to continue fighting. I take detoxing (have a huge protocol at home including eating organic and mostly raw) very seriously; dieing bugs need to get flushed from my body asap. I challenge myself to be productive in some measure but am conscious of how much I can push my body in any given hour, and I have learned to “lean into” the weaknesses rather than fight against them. Spiritually, I am growing. I pray as I breathe... I talk to YHVH constantly. Sometimes, I have the physical and mental wherewithal to do some fairly intense Bible reading, which I cherish so much. I continue to fight for life.
People who have been sideswiped with chronic, disabling conditions in the “prime of life” have had to fight. They face not only the horrendous symptoms of the “dis-ease” and side effects/inefficiency of drugs/treatments, organ stresses (including digestive and metabolic dysfunction among others) + weight issues and body deformation that inactivity and poor posture create, but also the seemingly endless losses: losing friends, family--even spouses, pastimes, financial stability and, many times, homes and/or a job/career and maybe even their working brains! One of the most common and possibly most damaging losses of all, imho, is the loss of a doctor whom the victim thought she/he could rely on to have her back. In my personal experience and in listening to endless testimonies, western medical doctors soon wash their hands of folks like us for a variety of reasons... and there we sit... out all alone in the foggy, cold, cruel world of the paralyzing unknown.
Maybe prayer is the biggest, best thing anybody can do with his or her life! This illness has not taken YHVH, the God of the Bible, away from me and it never can. He has not been taken by surprise, either, and He can’t be. He USES everything and turns everything into beauty for His glory. While that’s too big and too crazy, too odd, to wrap our heads around, it is true.
As I continue to redefine myself, this web site grows, changes and blossoms. I pray that it touches your heart and gives you encouragement by speaking TRUTH to you. False hope is worthless; hope in God and His Direction for your life is REAL. Follow the pages to the left of the screen; maybe some things there will trigger some great ideas for things that might bring you joy, peace, and a sense of accomplishment...maybe a smile to your face!
Be kind to you as you learn, sometimes minute by minute, to redefine and live your very different life.
