High Hopes and High Places

I suppose I can point back to my belief in "no coincidences."

For more than a year, I've been looking out my kitchen window at the view of Little Pisgah and Bearwallow Mountain and telling myself I will get new hiking shoes, so that climbing those and the other high vistas in this area will be easier to do. I haven't owned hiking shoes in many years, and my sneakers and duck boots don't give too firm a footing for those kinds of inclines, even when my feet are healthy. But I have a love of high places, and I have meant for some time to keep returning to them.

Then this happened. This attack on my spinal cord. This numbness and nerve pain. This lack of coordination. I stumble in the uneven block and gravel walkway from the drive to the house steps. I have to look at my dead feet when I use the stairs to be sure I'm actually stepping onto a tread, up or down. Slippery wood planks after all this rain make me gasp in public--am I on solid ground? I can't actually tell.

The high places seem farther away because of the new situation. But farther away does not mean unreachable.

Last week was the most painful I've had in this experience with transverse myelitis. At times, pain was excruciating. As I passed the four-week mark, I admit, my spirits were not in high places. I had some moments in the pit. Worried. Wondering. Am I strong enough for this kind of chronic pain? What if it never leaves? What if this is what I have to face daily from this point forward? How can I function? I need to provide for my children. I need to be present for my children. I want to keep serving in my church, job, and community. I have a new relationship with a kind and caring man that I would like to progress in. But this pain was all-encompassing, consuming. I would say it "bore into my brain." Maybe that helps you understand what it was like in its relentlessness.

I am hoping that I have turned a corner in the pain department now. It's early. I don't want to be unrealistic. The future in that regard is still uncertain. I have had some better days since that low, however. I am now approaching five weeks in and the broad window for when most transverse myelitis sufferers begin to see relief from pain is between two and 12 weeks--if they are going to have a recovery (and 33%-67% do experience some healing). I'm solidly in the middle of that window, then.

But in the midst of that excruciating pain last week, something popped up that I chose to see as a sign. A sign that I am to work toward reaching those high places again and not let this issue stop me in my tracks, or keep me below the horizon forever.

There was one pair of Merrell women's hiking shoes that I've wanted for this whole last year, to use to reach those high places more readily than I would have in my other options. But hiking shoes are very expensive, and I'm a single mom with a lot of kids and someone always needs shoes or jeans or braces or field trip or retreat fees or something else. So the full retail price tag was just a 100% deterrent, and even though they would pop up as an ad from time to time, I never even clicked on them after the first exploration. I just scrolled past. Until last week.

At the darkest point, the hardest pain, the time when I was watching the clock for the next opportunity to take a prescription opiod painkiller and anti-nausea medicine to get through the hours, those Merrell hiking shoes, in my size, went on sale at REI. Good old REI. I love the store but haven't actually spent money there since I was a single adult with no kids more than two decades ago. But once a member at REI--even if it was two states away and a lifetime ago--always a member at REI. And there were my shoes. On sale. And no small sale either. 70% off retail. My Merrell hikers that I'd been wanting had dropped down into the range I might find for my young teen's shoes at Target.

I really didn't think much about this purchasing decision. I know. I'm an intuitive, not a senser. Everything MEANS something. So I just acted on it. I ordered them. I took it as a sign and a motivator, something to work toward: You WILL reach those high places. You will walk with sure feet again. This is going to be the reminder of that goal, and it's being offered to you at bargain basement prices! If that's not testing of the spirits for a money-saving-mom with dreams, I don't know what is.

The shoes were a tangible representation of my goal to get better, to heal, to regain solid mobility and enough freedom from pain to function in places of joy after challenge.

I bought the shoes. They came today. I will put them out in view instead of in the closet to wait, and I will think about reaching those high places.

Habakkuk 3:19 is on my mind as I do this. For a very long time, it has been one of my favorite verses to cling to, to return to, to hold on to, to let change me.

God, the Lord, is my strength;
He makes my feet like the deer's;
He makes me tread on my high places.

I see double meanings in this verse, especially as it comes out of the Prophets and to our ears, our lives. My ears. My life.

I live in the mountains. High places here are good things. Long-range vistas. Breathtaking imagery. Wide open spaces. Lush vegetation. Freeing, return-to-Eden-like stuff. I have no doubt that to the deer, and to Habakkuk, there are similar parallels of beauty, freedom, GLORY associated with high places.

But not all high places are set apart by us for God's glory. In the Old Testament, the high places were often sites of idol worship. And oh, don't I have my own idols set in high places? Isn't even my own self-sufficiency one of those idols I set in a high place? Do I like to admit I am down, in need, injured, removed or limited in service? I do not. I admit it. Pride, my own superficial definition of myself, the health and active life and "It's REBECCA; she's always on the go" labels are things I thrive on. I put these images on altars in the high places of my life.

But look. Look at what God, the Lord is: HE is my strength. Not my shrines to my mobility and activity and service and efficiency. HE is my strength. And what does he do with those places of idolatry for me? He MAKES ME TREAD ON THEM.

I love this idea that he causes me to stamp out, crush (like he will do, has done, to our ultimate enemy) these fixations of my own. Anything that will take from him his glory in my life, he will remove from me, because he loves me. Because I am his. I can have no other master; no other lover of my soul. So he will cause me to tread on my high places of idolatry that put any semblance of my own strength in view of his work in me, for me. So he and I can have the closeness we're supposed to have, with none of my idols in the way.

Because he loves me.

But because he loves, because HE LOVES ME, he will give me back even higher places, and because he is my strength, he will strengthen my feet. LIKE THE DEER, who traipses cliff and cleft with tiny, sure feet to reach those upper limits. Sure-footedness feels far from me right now. But HE is my strength. It is not out of reach. And when I do reach it again, it won't be the Merrell shoes, but the healing of my Creator and my Savior who gets me there.

I believe it.
I believe he will make me tread (as in trample) the wrong high places and then set me surely to tread (as in walk securely and confidently) the ultimate, glorious, triumphant high places too. And I believe it will be both spiritual and physical. I will see the goodness of the Lord in the land of the living--and that land may just include Bearwallow Mountain and Mt. Pisgah and Little Pisgah and Mitchell and Craggy Pinnacle again. So be it. I'm all for it.

In the meantime, I am seeing some improvement, as I mentioned above. Pain is far less severe. This morning, I took my last of the largest doses of prednisone. I do think it is helping, and I will continue on a 25% smaller dose for the next several weeks. I'm glad to take the dosage down. Prednisone has side effects and I've had several, with nausea and vomiting being the worst, but also bloating, facial swelling, some hair loss, and 2:00am sleeplessness with the munchies involved. It can also cause an increase in blood sugar, so my diet has to be low-carb and carefully monitored. But as long as it is working, I will follow my instructions. The last two days, I have had discomfort but not what I would call intense nerve pain, like it has been. This is a tremendous blessing and makes me hope with some reason behind it that perhaps there is actual healing and not just pain management at play here. (Feel free to pray for my Schwann cells by name. Those guys are on call to make a big difference in my healing, and as my brother says, "Demo day is over. Time to start the rebuilding." Schwann cells are fascinating. They do different duties and miraculously, by their Creator's hand, know when to change jobs. I literally do pray for my Schwann cells.) I can only trust in the dark right now that something good is happening. My feet remain numb, prickly, unstable, but less painful. I think my left leg is less numb. A repeat MRI on or about March 11 should show whether the lesions are less inflamed and stable. We hope to see no new lesions in that scan, and less inflammation than there was in the first one.

But also in the meantime, I am beginning to learn to come down from my pride's high place and ask for the help I need. I need a more stable walkway into my house. This is the current walkway to the back door. It is a single-file line of pavers spaced far apart and uneven with large, loose gravel scattered between. The gravel easily gets kicked up onto the pavers, making even the flat parts rocky soil. I have ordered enough flat pavers and some sand to redo the walk so that it is two pavers wide with no spaces between. A flat surface will make a huge difference for a person who can't feel the bottoms of her feet! As it is, I have stumbled too many times to count--and it's worse if I am carrying something that blocks a clear view of my feet while I'm walking. It's a humbling feeling--always looking down and not up and out into the world, and still being unstable! My good man has offered to help replace the walk on Saturday morning. My good friend Jordan says he thinks it's highly possibly he can come around to help as well. I plan to ask my church if maybe one or two other men with shovels, a level, GLOVES (by all means, GLOVES), and a servant's heart would help as well. It's a little under 60 square feet, when all is done (2' wide by about 27 feet long), and I think 3-4 guys could probably make quick work of the walk--which would be a relief.

Finally, in that area of humility, I will say that I have been blessed, relieved, helped, and delighted with the meal train that my dear Ashley set up for us, and for every person who has so lovingly created these beautiful, nourishing, and satisfying meals. I really didn't know how much a meal train could benefit, but under these circumstances it has been a life saver. It is still going on at a rate of 2-3 meals per week, and I am humbly asking that if it is possible to keep it going until right after my 3/11 checkup and MRI, it would bless us still. Self-sufficiency can take its rightful place for a time. Standing on my feet at dinner time HURTS, and I really can't even yet imagine navigating a grocery store for a big shopping trip yet. I can get in and out for fill-ins for breakfasts and lunches, but I just don't think I can yet put in the time for a full, family-sized grocery trip yet. Soon, though. Soon.

So that is my humble but hopefilled update.
And these are my new hiking shoes.

I wish I could tell you how they feel. I can't, because I can't feel my feet. But maybe that too will come one day soon. They'll still serve as an inspiration to keep hope and work hard and obey instructions and BE STILL ENOUGH AT TIMES TO KNOW THAT HE IS GOD AND I AM NOT. And I'll post pics again when I wear them to tread on some more high places. Or maybe you'll come along.

The Surprise Diagnosis: Transverse Myelitis

This is going to be an informational blog post, just to help get an update out there in one attempt, rather than rehashing the story over and over.

This won't be much of a reflective post. I'm not far enough along in this journey yet to even begin to process what it might mean, how it might work for good. This is a "just the facts" post for those of you who have been so kind and thoughtful to ask into my life over the incidents of the last few weeks. (Update: I've begun a bit of that reflection plus seeking and accepting inspiration to focus on healing since writing this. You can find that post here. )

So here goes. PLEASE NOTE: I am going to talk specifically about physical symptoms.  Some of those reach into the pelvic area. If these kinds of details make you uncomfortable, you might want to skim lightly and/or skip bits of this post. But I am not going to edit out important details because others suffering similar rare conditions might need to know everything that is going on, to compare for their own health.

Absolutely out of nowhere, in January, I went from being active and healthy to exhibiting a series of strange and disruptive health symptoms. I am going to start at what seems to me to be the beginning, though I am also compelled to remember that "correlation does not equal causation." What I note as the starting point may simply be coincidence, and we may never actually know with certainty what caused my condition.

I have been diagnosed with transverse myelitis, a rare and incurable (but highly variable) condition that attacks the nerve cell covering called myelin in the spinal cord. There are other forms of myelitis or demylineating diseases, some with known causes. Polio, for instance, is a type of myelitis. I do not have polio. Multiple sclerosis is a type of myelitis. Due to the acute nature of the onset of my lesions, my condition is not thought to be multiple sclerosis at this time, but it is not 100% ruled out. Only the passing of much time will be able to unequivocably rule out MS, but it looks unlikely.

The first health condition of note occurred on Sunday, January 13, 2019. It gets noted in this story because it was an unusual event and the doctors I have seen at the hospital (both neurologists and infectious disease doctors) took careful note of this event, documented it, but could not say that it was the initial cause.

On that cold evening, I had just assembled a decorative firewood rack for my mud room. I was filling it with firewood from outside, planning to have wood dry and available inside for numerous cozy fires over the next few winter days. I failed to put on gloves, which, in hindsight, was quite foolish and careless of me. I would do that differently if it was possible to turn back the clock. But here we are now...

After a few armloads, I remember reaching down for a log with my right hand. My hand went under the log and I did not see what it came in contact with, but I felt a single brief, sharp sting on the first joint of my middle finger--the spot where your pencil rests when you're handwriting something. It wasn't even severe enough to make me put down the log right away. I brought it inside, set it in the rack, and then examined my finger. The pain had already stopped. I thought I had gotten a splinter, but nothing was visible except a single, tiny, barely pink dot. It didn't hurt immediately, and I thought no more about it that night.

But the next morning, Monday, January 14, upon waking, the spot had turned into a prominent, raised, thick-skinned, hard blister. It was about 2 mm in diameter. The top of the blister was white but it wasn't filled with pus. The white was simply the thick, raised skin with clear fluid under it. It was quite sore at this point. The white blister had a small dark red ring around it. The ring was at most about 2mm additional encircling the blister. It was not yet raised or puffy. Over the course of the day, that ring spread wider and began to swell and thicken, like a raised pad of flesh surrounding the blister. It turned darker red--not quite purple but burgundy. The radius of the swollen pad reached about 5mm in any direction around the blister and a thickness of about 3mm elevation above typical skin level. The blister opened. Clear fluid, like water, drained immediately. It did not continue to ooze. There was no pus. The skin seemed to close back up and stayed white for a time. The interior of the blister was quite sore--too sore to touch. Pressure of any kind drew an immediate reaction to make it stop.

On Tuesday at work, I found I was very uncomfortable. My chair was uncomfortable. My back was uncomfortable. I was fidgety. My neck gradually grew slightly stiff. I began to get chills. I recognized this as a fever coming on, causing chills, body aches, general malaise and discomfort. I took my temperature after work and it was close to 100 degrees. It continued to rise gradually, reaching 103 by Wednesday, January 16. I made an appointment to see my general practitioner, suspecting influenza, even though I did have a flu shot last fall. But I also wondered if the sting/bite/splinter could be related. I showed a picture to my boyfriend, who suggested it could be some type of spider bite and perhaps it was causing the reaction. I am mildly allergic to wasp stings, but I've been stung only once in my life. The reaction was extensive skin-surface level swelling that created a raised pad of flesh almost 7 inches long and 4 inches wide around my upper arm and to the elbow that lasted six weeks. I had no nerve issues or breathing issues from that wasp sting then, but was told it was possible that reactions could get worse or change with repeated exposure to insect toxins.

The doctor looked at both the wound on my finger and my other symptoms. He felt they were unrelated. He suspected I had pricked my finger on the wood and introduced some earthborn infection that was limited to a skin infection, but wanted to treat it with an antibiotic. He did an influenza test for the fever and body aches, which now had added headache to the list of symptoms. The flu test came back negative. He still presumed that I had some type of virus that was flu-like and that I would develop a respiratory illness over the next day or two. He prescribed rest and fluids and over the counter medication for that illness when it did show up. But it didn't.

I started the antibiotic (a sulfameth something or other) on the evening of January 16. By the end of the day on January 17, I began to detect the symptoms women often get when on a strong antibiotic, suggesting that a candida yeast imbalance was beginning. I ate whole yogurt and took a probiotic supplement but by Friday the 18th, I was in true pain that felt like a yeast infection. I emailed my doctor again, and he wired in a prescription for two doses (a week apart) of fluconazole antifungal. I took the first dose that day.

On Friday evening, another new symptom emerged: urinary retention. Late in the evening, I had the strong urge to urinate but was unable to get the urine to let down for almost 20 minutes of frustrated trying. I thought it was probably just a condition of swelling and irritation from the fungal infection, and was relieved when it finally did happen. But that wasn't the end of it. Even as the pain and irritation from the yeast subsided, urine release continued to be difficult for the next several days. Sometimes it would take minutes--5 to 7 minutes was normal--to concentrate, relax, run water, breathe deeply, and eventually be able to go. But on Monday morning, it got worse. It took a full 30 minutes and involved getting into the shower to let hot water provide a muscle-relaxing massage before I could go. I was getting scared now.

Additionally, over the weekend, I developed another short-term symptom. My wrists, palms, fingers, ankles, arches, and toes all suddenly took on elements of what I think arthritis must be like. I've never had arthritis, so I am speculating, but hands and feet both became stiff, tight, sore, and painful. It was difficult to stretch or bend digits. I wanted to rub and rub and rub my hands and feet to try to relieve the discomfort. It lasted 36 hours and then disappeared as suddenly as it had come on. All day Saturday the 19th and half of Sunday the 20th, and then I was back to normal in that regard.

Still, no respiratory illness had shown up from the suspected virus of the days before.

The wound on my finger began to show minimal signs of tissue necrosis, but no more than one gets from a normal blister achieved from hard work. The top layer of white skin simply died and peeled off, leaving a small crater in the still-raised fleshy pad. It was too sore to touch, like raw new skin. The peeled spot was about 5mm in diameter and its center had a dark red spot about 2mm in diameter, darker than the surrounding swelling. It remained open for more than a week and then gradually began to scab over. Today, February 18, there is still a red tone to the skin there but there is no raised matter. The scab had dried and come off and the skin is healed. Pressure on the spot does give a slight sensation of a pain center still but it is not disruptive.

I continued to monitor (and worry a bit) the urinary retention issue from Monday to Wednesday but it did get gradually better. Urination still took effort and concentration but I was able to go and didn't need to catheterize, so I didn't seek any medical help at that time. But on Wednesday, January 23, another new symptom arose. When I woke that morning, the first three toes and the ball of my left foot were asleep--in pins and needles. Very obvious, pronounced, prickly pins and needles.

I got out of bed and tried putting pressure on the foot. That segment shot pain through it. I waited for it to wake up, expecting circulation to flow with gravity and pressure and for it to right itself, but it never did. To this day, that foot has not yet "woken up." Over the course of the day, the prickles spread to all my toes and the full underside of my foot including arch and heel. The prickles spread to the top of the foot that evening. On Thursday, a general numbness began creeping up my left leg. By Friday, it had reached my pelvic area, left side.

Friday was the wedding of a couple of dear friends. I was determined to dance at their wedding and did so. I'm proud to say I did not fall down, and there was really no shame at my clunky dancing either because I never made any suggestions to be good at dancing--just that I would do it. But I was aware the entire time that only one foot/leg was in that game. I had no idea why I was experiencing this, but my left leg simply felt numb and dead. I could move it. I could put pressure on it. It would stay in place and hold me up. But the bottom of my foot was in intense pins and needles pain and the rest of the leg felt heavy and numb to the touch--as if I'd had a too-strong epidural that took on only one side of my body. I faked my way through the evening and had a great time, but I was worried.

I told my boyfriend about the growing numbness and we speculated that I had pinched a nerve. Maybe it was sciatica. I didn't have back pain though, so it wasn't a spot-on fit. But I made an appointment with my chiropractor for Monday, January 28. My chiropractor is very practical about joint adjustments. For the last 18 years, I have been to see him a few times a year just to keep my spine in good alignment. If something is pinching a nerve, he can almost always relieve that in one session and send me on my way.

The chiropractor found a slight misalignment in my pelvis (just a slight rotation; it's common in active women) and made an adjustment to that. We both hoped that would solve the problem, and that evening, I did think that I could feel more sensation in my upper thigh and one segment of my foot. It didn't last, though, and now I am not sure if that was just a fluctuation in symptoms or a "wishful thinking response."

I emailed my doctor on Tuesday to tell him about the growing numbness. He suggested I give it a day or two and come in if it didn't resolve. It didn't. I made a second appointment with the chiropractor for Wednesday, January 30. He did not find misalignments and was puzzled by the symptoms. The lack of back pain suggested to him that my situation was not likely to be a pinched nerve or herniated disc. He saw no signs of sciatica. He said he believed my condition was something medical beyond frame alignment and that I should return to my doctor for more advice.

I made an appointment with my doctor for Friday, February 1.

After recounting all the details about urine retention and the extent of the pain from the jangling nerves (which by this time had moved far beyond discomfort and into real disruptive pain, alternating between sharp stabbing pins and a sensation of debilitating frostbite in my foot), my doctor truly paid attention. He told me me feared a herniated disc and wanted me to go immediately, nonstop, to the Emergency Department at the hospital. He said he would call ahead to tell them I was coming and he wanted me to get an MRI on my spine right away. He told me to expect to be admitted and to keep all options open. Surgery might not be out of the question.

I reported to the ER at about 11:15am on Friday, February 1st and spent the entire day there. It took hours to get in for the MRI, and the initial MRI that was ordered was not actually for the needed area. The ER doctor orderd a lumbar spine MRI, basic, without contrast dye. It came back clear--and there was some good news in that if even not a solution. I had no herniated disc, no spinal stenosis, no misalignment, no tumor.

The ER doctors changed shifts. A new one had me retell the entire history. He repeated the reflexes tests on my legs and feet (tickles, taps, muscle resistance, pricks) that were done earlier. Everything was responding even though it felt painful and weird. I told him on Friday evening that I thought I might be feeling some prickling in the toes of my right foot now but I was unsure. It wasn't obvious, and it could have just been my head playing tricks on me out of fear. He listened and agreed that I was probably imagining it, but he wasn't condescending either. He was thankful to have the information, even if it wasn't scientific yet. But it would become that way very soon. The new doctor said he wanted to confer with the on-call neurologist to ask about a lumbar puncture to test spinal fluid. He was considering multiple sclerosis and Guillain-Barre syndrome--though he felt my reflexes were too good to be Guillian-Barre. He talked to the neurologist who did not want to do the spinal tap yet, however.

The next step, then, was to order a CT of my brain. There was suspicion that perhaps I had had a minor stroke, causing some level of neurological damage to my left side--or perhaps that there might be a brain tumor affecting the nerves on that side.

The CT likewise came back clear. No evidence of stroke, brain tumor, or tangled blood vessels. Blood tests were next. Basic tests showed no sign of heart attack or any obvious active infection. The ER doctor and neurologist (whom I did not meet but got reports from through the ER doctor) said infectious disease was also being looped in. More indepth blood tests were ordered. Results would take hours to weeks to compile, I was told. No lumbar puncture was ordered.

I was released from the ER around 9:30 or 10 that night without a diagnosis. I was told that the outpatient neurology would set up an appointment with me on Monday morning for more study, and that if I had not heard from them by 10:00am, I was to call to set the appointment myself.

On Saturday, the prickles began in my right foot in earnest. By Sunday, the right foot was tingly with pain almost as severely as the left foot, but the numbness did not progress up my right leg. It remained in the sole and toes of the foot, with the sharp sensation and not the dull, numbness.

I contacted my doctor again on Monday and told him it was still progressing. I made another appointment to go in to see him on Tuesday, February 5. I did not hear from outpatient neurology, and so I called them to get my next appointment. The scheduler was coarse and difficult. He told me I needed a referral to get in with the practice. I told him I thought that was what their neurologist and the ER doctors were talking about on Friday. I told him I had paperwork they had printed for me with instructions, that phone number, a plan. He seemed exceedingly annoyed and put me on hold while he "went to try to figure this out." When he returned, he told me they had a very busy practice and could not just take on new patients with a phone call, but that he could find one neurologist that he could work me in with in late April. I took the appointment with great discouragement.

At my doctor's appointment on Tuesday, my general practitioner said he was not happy with the April delay. He called the neurology office and left a message. He asked me to wait in the office there for a response because he thought my situation required some urgency. It took about an hour for a doctor from the neurology practice to call back, but she suggested that he set up a direct admission to the hospital for me for that same day, so that I could get back in for full analysis there without having to come to the practice. So I went home, got my kids home from school and fed, packed a bag for two nights in the hospital (I was thinking optimistically) and went to check myself in.

I was told to expect another MRI of a different section of my spine and a lumbar puncture over the next 18 hours, and I received both, plus an additional MRI of my brain. Both MRIs were done using contrast dye to "light up" any areas of lesions or inflammation. The MRIs were easy. The lumbar puncture was hard. Every single staff member at the hospital, from nurses to aids to transport staff to lab techs to whomever it was that put that spike in my spine were wonderful: communicative, compassionate, concerned. I cannot complain about the care I received while going through this. But answers are still hard to come by.

The thoracic MRI with contrast dye showed the problem. 5-6 new lesions, all about equally inflamed, suggesting they are the same age, on a section of my spinal cord. The lesions reveal that something has caused the fatty, protective myelin sheath on the nerves to deteriorate. An uncovered nerve goes haywire, sending false signals of discomfort, pain, sensation. The lesions on my spinal cord occur on both sides--the transmitting and the receiving side of the nerve fibers. Hence the name "transverse" myelitis. (Mayo Clinic: Transverse Myelitis) The brain MRI was presumed to be clear, however the neurologist reporting back to me said there was one tiny spot on it that could be a lesion or "could be a bit of fluff on the image," she said. It was too small to be taken seriously enough to re-run the MRI but will be checked in the next followup MRI in March.

Both the neurologist and the infectious disease doctors said they would keep looking for an actual cause of the lesions, but both agreed that such a cause may never be found. In many cases, transverse myelitis is an autoimmune response that hangs on and attacks the body AFTER the body has fought off some real threat. It seems to happen randomly.

I was put on intravenous steroids daily while in the hospital to try to reduce the inflammation and calm the activity around the lesions so that hopefully they will begin to heal on their own. While there is no cure for myelitis like this, about 1/3 of patients with it will see healing and restoration of the myelin covering of their nerve cells. Another third will receive partial healing but may be left with some odd pains or sensations or limitation in function. Yet another third see no improvement at all. I am told that improvement usually takes place between 2 and 12 weeks of onset of symtoms. I am on day 26 right now since the first sign of pins and needles. I do not yet have improvement that I can point to as progressive or obvious. Pain comes and goes but is present every day. It is worse in the afternoon and evening.

I stayed in the hospital for a week and was released to home on Monday, February 11 with prescriptions to continue the high-dose steroid orally, and some other medications for nerve control and pain management. Out of fear of becoming dependent, I don't think I have been taking enough of the pain management medication. Last night, I hit a real low with intense pain and a sense of emotional fatigue that I may not be able to endure under it. I took more medication and got some rest. Today, I think I can make it through today.

I've been advised to follow a nutrient dense diet to give my body what it needs to rebuild the myelin if it becomes ready to do so. I've been advised to keep my diet very low carb too because the high dose prednisone can prevent the body from processing blood sugar correctly, and a carb-centric diet while on the steroid can mimic diabetes. We definitely don't want that. I was told to supplement my diet with high quality Omega 3 fish oil, vitamin D3, vitamin B12, good quality collagen, green tea, turmeric, folate, avocado, spinach, kale, olives, blueberries (low on the glycemic chart but loaded with antioxidants), salmon, tuna, whole eggs, nuts. I am following all the instructions. I want to get well.

Today I have a slight burning sensation in my spine in the thoracic region. I do not know what this means. It could be simply muscle fatigue from compensating differently for a "dead" leg and foot. The body will adjust to still do what it needs to do, even if that means moving in new ways that aren't exactly natural or ideal.

There's a whole lot of "hurry up and wait" in this scenario. Wait for the steroids to help the inflammation. Wait for the next MRI (which will be on March 11) to see if inflammation is down and hopefully--NO NEW LESIONS ARE FORMING.

If the steroid therapy does not help--or doesn't help enough--there is a possibility of doing a blood plasma replacement. In this case, my blood plasma would be removed and replaced with much donor plasma. The idea behind this is to remove the aggressive autoimmune antibodies my body made--and which might still be attacking me--with antibody-free plasma, and hope for a reset. I am open to that therapy and will welcome it if that is what needs to be done.

I have beautiful friends in the Body of Christ who are taking care of me. Meals are coming about every 3 days--generous meals--and this helps so much as being on my feet to cook in the evening is the most painful time of day. Prayers are being poured out. Offers to help with groceries and visits and anything needed are constantly on the table. I am thankful. I need my Tribe.

I don't yet know how I actually FEEL about all of this. I'm not asking "Why?" right now. I'm just seeing this truth: "This happened." I want very much to get well and not hurt like this. I want to return to service and I want to enjoy my life, of course, but I can't do much in the way of processing until some more information comes in. So I desire your prayers over me as much as you are willing to give them, and I will update on this blog to reach as many people as possible whenever I have anything relevant to share.

Thank you to all who took the time to read this.

--Rebecca