|photo by skeez. public domain.|
Hey, Hi. It's occurred to me that I haven't posted since September. I was shocked to see that. Not because I'm so punctual when it comes to this blog, but because it seems like only a couple of months ago that I was posting about Jacob's football season. So much has happened--things kind of derailed at the end of football season, so I thought instead of a long, drawn-out explanation of things, I'd just make a bullet list and try not to meander...as I tend to do.
- My back took a turn for the worse. Probably because of all the extra work of a toddler. My injured back was injured more and nose-dived around Halloween. I didn't get to take Will trick-or-treating. He was a little dragon. My costume was "writer with a back injury." Brandon stepped up (a sign of things to come) and took Will around the cul-de-sac. They both loved it. Will was astonished by candy bars.
- After an MRI it was determined that I (finally) needed surgery to repair a collapsed disc. The image was scary. I was very eager to have it fixed. Surgery was scheduled for January 12, 2016.
- My sister hosted Thanksgiving. It was the first time I didn't bring pie. Or maybe I did. I don't remember. I was on heavy painkillers. I do know I brought one of the turkeys. It was beautiful and the whole dinner was delicious. I remember Will hated his port-a-crib and I got two hours of sleep between 6-8 am, when Brandon finally took him out of the room. It was his first time staying somewhere else since we brought him home. I don't remember much else.
- Will's first Christmas was so fun. I'll do a separate blog post for that. It was wonderful to have a little one seeing his first Christmas. The older kids were awesome. We got to Skype with Braeden from Riga, Latvia. Lots of laughter and gratitude. I made our traditional chiles rellenos dinner, but this time I had lots of help.
- Chelsea, Matt, and Carly came for the week of New Years. They got to meet Will for the first time! Carly and Will were shy at first, but they recognized each other from our Skype sessions. Then they were pretty inseparable/adorable. We got lots of snow! The kids had lots of snow play in the yard. Will loves snow. It was sad to say good bye.
- My surgery (my first ever) went well. So weird to be awake and blinking one minute and then waking up to a new world--a world of agonizing fire the size of a basketball in your back. They hurried and got the pain meds in me. Gah. I went home an hour post-surgery. I had my phone alarms set for meds. Brandon took really good care of me that first week. I don't really remember it. My surgery was on Tuesday. The next morning I said, "It's Wednesday, right?" He said, "It's Friday." He must have taken really good care of me.
- A week after my surgery, Braeden returned home from his 2-year mission in the Baltics. I didn't get to go to the airport, so I waited at home. I was using a walker at this point but couldn't get in a car. My friends Sara and Laura went and took lots of pictures and video. Yay for friends! When Braeden came to the door, and I was able to hold him, it felt like a piece of my heart was in its place again. He stayed by my side and talked to me a lot while I rested.
- The following week, Brandon had to return to work and Braeden was job hunting, so Will and I went to my mom and dad's house. That was a dream. They both took such excellent care of me and Will. The craziest thing was when they set up our (me and my sibling's) old crib for Will! They still had it! They helped me through tears, we laughed, they made sure I rested and exercised, and fed me a lot of really good food. Will absolutely loved it there. I stayed for two weeks. I did a lot of healing, inside and out.
- My second grandchild, Brady Robert Bare, was born on February 10. He's adorable and has the biggest blue eyes I've ever seen. It broke my heart not to be there, but Matt's mom, Gigi, was able to be there and help Chelsea afterward. I'm so grateful for good, helping mothers.
- Back home, Braeden had found an afternoon-to-late-hours job, so he was able to take care of Will (and finally get to know his new brother) and me until Will's naptime. Maren would come home from school after that. Braeden went from never having changed a diaper to being Mr. Mom. It was great. I was up to walking 0.9 miles in 40 minutes. That's the lowest speed on the treadmill, but the fact that I could be upright and walking for 40 minutes was awesome. I was starting gentle yoga. My back pain had gone from a burning sack of lava to two small jagged rocks pressing against each other. I was pleased with that.
- Most of my family and some of Brandon's family were able to come for Will's baby blessing. I was worried about Will having a meltdown during the blessing, I prayed about it. My answer came simply: Have Will shake hands and say the name of all the men taking part in the blessing, and then give him a cookie while he sits on Grampa Anglesey's (my dad's) lap. Maren made cookies that morning. It worked beautifully. Brandon gave him a blessing while Will happily munched on a big homemade cookie on Grampa's lap, surrounded by all these friends he'd just greeted. And know what? The cookie was made by Gramma A, Because they'd had the same idea. Will ate Maren's cookie afterward. :)
- That same Sunday, Braeden gave his mission homecoming talk. It was a memorable day, and the first day I'd been to church since December. The family came over for food after. I loved that. I love my house full of people.
- Late February something went really wrong. I had a sore throat and slight fever, no biggie. Then one night my legs started burning, like they were on fire. By morning the fire had spread through my whole body and by the next morning every joint--from my toes, ankles, knees to every joint and knuckle in my hands were frozen hot. On top of this, it felt like every nerve in my body was plugged into an electric generator. I couldn't move. My muscles were slack and I was terrified. I called the doctor and he could see me in two days. I would spend an hour working out the stiffness in my joints enough so someone could help me out of bed to use the bathroom. I walked like a drunk robot, having to really focus on my muscles for them to move. I couldn't raise my arms to eat. I had no appetite. I lost 6 lbs in a week. One night my breathing was very soft and shallow. I felt like a burning husk. My eyes teared constantly. I was scared. I took stock of my life and thought I'd done okay. Dramatic, I know, but that's what I did.
- The doctor referred me back to my surgeon as soon as possible. In the meantime, he prescribed me Neurontin. It helped dial back the burning and I no longer woke up with frozen joints. It smoothed out my movement. It helped me sleep. I love Neurontin. I still felt a continual buzz coursing through my nerves, and the whole inside of my mouth and my tongue tingled like pop rocks.
- The next week my surgeon referred me to a neurologist. The appointment was at the end of May, two months out. He guessed that a virus was attacking my nervous system. So I had two months to dwell on that. I had a brain MRI and blood work. Both came back normal.
- Physically, I had to start back at the beginning, walking 10 minutes, completely exhausted after. I'm so grateful Braeden was home for a while before going to BYU for spring semester. And Brandon totally stepped up to take care of anything else on top of his own demanding responsibilities. He became Super Brandon. He did things I didn't know he could do. He's been holding out. ;) I love Super Brandon.
- I couldn't write anything during all of this time. The pain would just overpower any focus. I could barely read. The medicines made me tired. The idea of writing romance was as far away from me as was running a marathon. My publisher, Covenant, was so patient with me, moving my deadline dates further and further ahead, and encouraging me to put myself and my family first. Thank you, Covenant.
- Separate from the nerve issue, my back was getting lots of rest, and gratefully, continued to strengthen. So much so that as long as I was careful and didn't lose my balance or get jostled, the back pain became secondary to everything else. That was helpful, and as the pain subsided, I was able to focus and start writing again. As long as I could stay awake. I started back up on the novel I'd had to abandon, and the words came.
- Braeden left for college. Brandon took him to Provo and that weekend they were able to attend Brady's baby blessing. I missed them both. I missed them all.
- Jacob gashed his shin open on a hurdle. For the first time ever, I took Jacob to the hospital. For the first time ever, I saw my kid's bone. Kinda cool. I'll spare you the pics. We were there for 4.5 hours and I didn't bring my pain meds. He sang songs to me while we waited. My favorite was Pat Benatar's "We Belong." We were both hobbling back to the car when all was done. But we were rock stars.
- Maren's knee caps had been randomly popping out over the past year. Very painful. She'd shove them back in and cry and we'd get her on ice and ibuprofen. It was becoming more frequent. The doctor took xrays and found both of her patellas are an inch too high. She'll need surgery on both knees. We're enjoying trips to the PT as they strengthen her up in preparation for that. Hooray. O_O
- Will has been a champ with all of this transition. When I was down, he'd bring me books to read and pretend meals from his kitchen. He'd say, "Mommy back hurt." Or "Cheek?" and I'd lean as best as I could while he reached up and rub my cheek softly, saying, "It's okay. It's okay." Melt. My. Heart.
- I worked hard to keep walking and tone up my muscles the best I could. Brandon and I decided that I would fly to Provo the first week of May and attend a day of my favorite writers conference and see my friends, and then spend a few days with Chelsea and her family, Braeden, and finally hold my grandson. Physically, the trip wore me out. Emotionally, it was very healing. I loved it. My friend Sarah Eden loaned me her cane, and I'm so glad she did. By the end of my conference day I could hardly walk, but without the cane I would have been done a lot sooner. Hooray for the cane brigade!
- I'm skipping to the end, because really I've just been resting and exercising and waiting for my neurologist appointment without trying to self-diagnose with unnerving online information.
- NEUROLOGIST APPOINTMENT: The neurologist suspected either a lesion on my spinal cord (formed as I healed from surgery), or a virus attacking my myelin sheath (the protective covering of the nerves themselves). I had another MRI of my back to look for signs of lesions. We looked over all my other images, too. That was trippy, seeing side and top cross-sections of my head. Hello, eyeballs. You are HUGE. Anyway, it all looked clean. My back is healing well, nice spaces there. No signs of lesions anywhere. Which is GREAT, but he had to go back to my symptoms and test results.
- Diagnosis: Transverse Myelitis. Which means a virus (or trauma of some kind) compromised the myelin sheath. It will take a long time (months to years) to heal. But the odds are very good that I will heal. Here's how I explained it to my family:
The neurologist compared it to hitting your funny bone (on a much larger scale). Something hit my nervous system and the onset was big and painful and rendered me pretty useless for a time. Then that twangy pain spread out to the rest of my body and is lingering. I thought that was a pretty fair comparison. Another description of how it affects my nervous system is that the connection between my brain and nerves is interfered with like static on a phone line.
SO. There's no cure. I just keep working at getting stronger. Exercise. Be careful. Vitamins. I'll probably add oils, too. It may take months-years, and the tingling sensation might never go away. But I should regain my strength and coordination as my myelin sheath heals. And that's good.
And that's where we are now. It's been two days since the diagnosis and a few things have been running through my mind. 1) I'm grateful to have a "something" to work toward instead of a blank. 2) I'm so grateful to those who've stepped up to help me and my family. 3) It's incredible how the absolutely important things rise to the top and the rest fades away simply because you are rendered incapable. It's a paradox, how freeing and how caging it feels. 4) You. My friends and family, and all of those who've prayed on my behalf, who are still praying, and who are wondering how I'm doing and hoping I'm okay. That's why I wrote this post. Because I know you're wondering. I'm overwhelmed by the number of you who care. But knowing that has buoyed me and helped me work harder.
So I'll keep working. And counting blessings. And doing what I always do.