I saw Dr. F., my new endocrinologist, this past week. Stroke aside, he was fascinated by my medical history, from infertility and recurrent miscarriage, to Chronic Fatigue Syndrome (ME/CFS) and all the interplay of hormones and off-kilter endocrine system there! He said I'm a "black swan" (highly unusual and unique) and that if we can pinpoint a few answers for me, it will help many others too. Of course, the strokes have likely done even more endocrinolocal damage and the only way to find out exactly what or how much is through several other (non-insurance covered) tests.
Nothing like being exciting to some of the leading doctors in multiple fields of science (in multiple states), even before you go and have a totally unrelated, maybe-seen-once-in-an-entire-medical-career-event, like my incredibly rare combination of strokes (that I'm even still alive, the specialists don't quite know what to do with me)! It is fascinating for me to interact with all these highly-skilled and incredibly-talented medical specialists that all act like, pretty much, every aspect of my health is amazing to study. But it does all get rather wearing and feels pretty Ginny-piggish much too often!
I think I've been recruited for at least 7 different (more, if you count surveys that didn't directly require blood work or other on-premises participation), typically unrelated to each other, medical studies and trails within the past 14 years (most within the past 5 years), with two more on the horizon for the imminent future! (I have yet to see one cent of compensation, though two recent one were supposed to include small reimbursements that should have long ago developed and never have, but mostly it is all just to further science.)
My primary care doctor and at least one of my therapists now just laugh whenever they hear of a new research study. Dr. F. was asking me about my pain levels and I told him how the strokes had brought about several new kinds of pain and pain syndromes, including my trigeminal nerve pain. I explained that it was presenting unusually and had been diagnosed as "a-typical," which totally fit because I never seemed to do anything typically. He laughed, but agreed that was par for the course with me!
For the current endocrine panel, I have three more big tests (about 8-10 hours worth) that I will be doing over the next couple of months, before the doctor even gathers enough information to see me again or start trying to help. We've already narrowed down one probable course of treatment to take, depending on what all these tests reveal. Sometimes, I really relate to the woman of Mark 5, "She had suffered a great deal under the care of many doctors and had spent all she had, yet instead of getting better she grew worse."
Thankfully, each of my doctor has been able to add something of value to my care, and often God has stepped in and provided levels of healing for which the doctors can offer no explanation and just shake their heads, but I guess God has decided that my mission field includes medical genuineness who would never listen to anyone else if they weren't seeing the touch of His hand with their own eyes. I sometimes feel like Moses, "Lord, I'm not up to the task. Send someone else!"
Unfortunately, I miss many opportunities where I should speak or otherwise show Christ's strength by my actions. I would greatly appreciate your prayers in these highly stressful and intimidating (and often physically, mentally and emotionally painful) environments, that I would recognize opportunities when they present themselves (instead of what is typical for me, after it is too late), that I would seize each opportunity presented to me, with wisdom, grace and boldness, and that God would give these men and woman ears to hear what He has to say through me.
I also want my life to be a fragrant offering to God, a living sacrifice, so that even when I fail to speak, Christ's Holy Spirit still shines through my spirit, attitude and actions, bathing each facility I enter with His peace that passes human understanding. I don't want to be fake in my humanness, I just want to more fully partner with God in displaying His glory at the same time.
This wasn't the path I desired, requested, or ever envisioned, but it is where I find myself. It is so reassuring to realize that this is all just very temporary, that this world is not my home! Like the woman of Mark 5, I grasp hold of Jesus and cling to Him!
|From my Path board on Pintrest.|
Yesterday, at therapy, I had to hold a ball in my arms (so it totally blocked any view of my feet) and then I was supposed to lift my feet, one at a time, up to touch my toes to these 6-inch, lightweight cones, without knocking them over.
I didn't realize how much I have come to rely on visual input (thank you, God, for giving me my eyes back!), but when I couldn't see my feet, it was so odd, like giant magnets sucking my feet to the ground (the exact issue I was having before I learned to walk).
No matter how hard I tried, I could not budge even that right (better) leg up from the floor, even a fraction of an inch, but as soon as the therapist touched my left arm (one more piece of mental information) I could lift either leg right up! The right one could do the toe touches with little problem (as long as she kept touching me, otherwise the muscle just refused to fire, I think Kendra calls this "tone" kicking in, and I was frozen), but the left is still pretty ataxic (sorry, I used the wrong word, one for a heart problem, when I emailed you, Kendra!) and the precision just wasn't there, so I kept kicking the little plastic cone over!
It was an odd feeling, but totally put me back to remembering how hard it was to take even one step before, when trying to re-learn how to walk at all. For many months, stepping used to be impossible, even once I could see again, unless I was touching something (wall, counter top, etc.) or someone was touching me. This has to do with mental processing and the brain's ability to recognize your body's "place in space," to be willing to fire muscles with a relative confidence that the floor will still be where you think it should be, to hold you upright again, when your foot comes back down again with the next step. I guess now my eyes have learned to give me much feedback about my own place in space, so that I no longer need to rely so heavily on other tactical input. Take that sense away, and I'm right back where I started! Please pray for my precious friend, Kendra, as walking is her goal and so frustrating current struggle!
Speaking of Kendra, the two of us have it in our minds that we are going to find a way to get together in person. Our poor hubbies, and probably our kids too, are just going to have to come along for the ride (or maybe we will be the ones "coming along" if neither of us are driving yet by then?). Anyway, it is still a few years away, but this is now our mutual goal. :) It is giving us both the needed incentive to push ourselves, saying, "By the time we get together, I want to be able to do ____!" Of course, this has been a dream/desire for us both since shortly after Kendra stroked, but we got more serious about it recently when Kendra's husband said he would take her to any restaurant she wanted, in celebration, once she reached a few more big, specific goals. She emailed me and asked about restaurants in my area. :D
Trust God from the bottom of your heart; don’t try to figure out everything on your own. Listen for God’s voice in everything you do, everywhere you go;he’s the one who will keep you on track. - Proverbs 3:5-6 (The Message)