A Long Weekend

What a weekend!
Friday morning Violet and I attempted to make divinity for the band members. Instead, it turned into concrete. It took several kettles of boiling water and clipping away at the hardened stuff before the mixing bowl was finally freed of the stuck mess. I haven’t a clue as to what went wrong and hope that the next try will be successful. Divinity was one of my Christmas candy standbys until our kids left home, then I gravitated to making holiday bread for gifting instead.

Then Jeanne and I drove over to Newberg for a called meeting of Representatives from each church in the organization of Friends that our church belongs to. Friday afternoon and evening and all of Saturday was spent in discussion with all the other representations, and listening to each other and the holy spirit as we worked through a situation in which one of the member churches no longer wishes to honor our Faith and Practices, (Friends’, aka Quakers, legal document) but still wants to remain an active part of the organization. No decisive resolution was made but excellent progress was made. When we adjourned about 4:30 the atmosphere was peaceful and we had the sense that things are moving in the right direction.

Jeanne and I sped home as quickly as the speed limits and dark country roads allowed, with little time to spare in grabbing a bite to eat and rushing up to the church to set up for the Annual Christmas Sing-Along which was scheduled to start at 7. People started arriving before 6:30, as the musicians were finishing up sound checks, making sure instruments were all tuned, and shuffling our chairs to make room near a music stand for a couple more instrumentalists who joined in the fun.

I was thrilled when a young cowboy came in with his fiddle and settled in where he could share my music. Feeling exhausted and run down I wasn’t sure how well I’d be able to play but having another fiddler was energizing. He didn’t read music notation but played by ear and knew chords (much of my “music” is the lyrics with chords). Having another fiddler was wonderful. Usually there are four or five guitars, a couple banjos, and mandolins. One of the banjo players brings a container of 12 harmonicas – one for each key – and a mountain dulcimer. He does have fun making music!

I forgot to take my camera. 😦

Someone said it was the biggest turnout we’ve had. The building was packed upstairs and downstairs, where all the food was laid out on tables. People congregated in classrooms and corners visiting and catching up with friends and making new connections. Scott from the scout ranch brought his crew of “cowboys”, young people from 12 on up who help almost every weekend with the cub scouts and horse program. They have a vibrant program with about 70 head of horses at the ranch. The young man who brought his fiddle is this year’s intern at the ranch learning administration skills along with running a horse camp. I hope he’ll join us if we have any jam sessions.

People enthusiastically sang themselves hoarse as they chose from over 50 songs that we have printed up in our Christmas books. People write the song they’d like to sing on a big whiteboard and as the list is sung it’s erased with more songs continually added so that anyone who wants to request one has ample chance. I have no idea how many songs we went through in those 2 hours as we sang and played non-stop.

By the time we’d said our goodbyes, straightened up the church and cleaned up the kitchen I didn’t crawl into bed until after 10:30. Within an hour I woke up to a pounding heart, tingling arms, nausea and malaise. Dysautonomia strikes again. I got up and drank some water with electrolytes hoping that would calm things down. It was a very long night with lots of praying.

I was able to teach Sunday School, while sitting down. I’m so thankful that early in October I was approached by another woman who enjoys preaching from time to time asking if she could preach in December saying that God had given her a Christmas message on Joy. The third Sunday in Advent centers on joy so we agreed that would be the perfect Sunday for her. So, not only did I not have to preach yesterday, I got to hear a good message about the joy that God gives, a message that was balm to my soul. Even when things feel out of control God is at work behind the scenes.

Between drinking over 100 ounces of water yesterday and getting 10 hours of sleep last night, today has been much better. Drinking plenty of water is key to keeping my blood pressure at a decent level (low blood pressure is one of the problems with autonomic dysfunction aka dysautonomia). I try to drink at least 90 ounces every day but with the long representative meetings Friday and Saturday I wasn’t able to drink as much water and must have gotten a bit dehydrated.

One great thing about the long discussions was having ample knitting time! I finished the hat for my son as well as some spinning with a kuchulu. I think only about five people in the same pew knew that I was doing something with my hands. 🙂

The hat is currently drying. I’ll take a picture of it tomorrow.

I’m very grateful to those who comment on these posts. Thank you! They are encouraging and help me to continue to post, even if sporadically. There are a number of comments that I plan to catch up with and reply to, hopefully tomorrow. For now, I need to get to bed.
Last Thursday this flower was blooming in the garden. The freeze that we had between Thursday night and Saturday put an end to the late autumn blooms.

dsc04643Thankful that even when life seems askew, God’s got me.

Dysautonomia

Sixteen years ago I would walk up Grandview every morning either up to the 2 mile point before doubling back or on around the 4.5 mile  loop. My walking pace averaged 13 minute miles even with the hills. I was in excellent shape.

Except, there’d be times that my heart would flutter and knock around a bit. Sometimes pain would ache down my left arm. I’d return home feeling limp as a noodle, light-headed, looking in the mirror there’d be a green hue to my face.

After an EKG showed nothing unusual my doctor requested a treadmill stress test. I wanted so badly for that familiar pain to push down my arm, instead, as 10 minutes passed and my blood pressure was dropping to alarmingly low numbers the doctor stopped the test and had me sit down on a chair in the lab room with my head between my knees to keep from passing out. The doctor decided it was time to send me to a cardiologist for more tests.

I was dismayed when the cardiologist said at our first meeting, “”I don’t know why you’re here. You’re only 43. Your cholesterol is good, you don’t smoke, you’re not overweight, but your doctor is concerned so we’ll run some tests.” The tests didn’t revel any problems and hearing that my heart was more like that of a 30 year old was terrific. Unfortunately neither of the tests included a stress factor even though exercise is what caused the symptoms.  At that point I decided to stop throwing more money to the wind.

Fast forward a few more years to a visit with a fiber artist friend who’s also a retired nurse. She told about living with Dysautonomia, the dysfunction of the autonomic nervous system. It goes by a number of names, and categories. As she describe her symptoms I was amazed to hear the similarities to what I’d been dealing with but had no idea what caused them. We had a great talk that helped to clarify so much of what I’d experienced, and she advised me to drink watered down Gatorade every morning when I first wake up to help balance my electrolytes. I found a recipe for making a powder to mix in water to always have on hand. It’s remarkable how drinking a glass of it when feeling weak does help, usually quite quickly.

Here’s a link on Dysautonomia which she recommended. Over the years I’ve managed pretty well until a year ago when I had a bad episode at Black Sheep Gathering. Rapid heart rate, nauseated, foggy brained, a overwhelming feeling of inadequacy, tingling hands & arms, faint and very shaky I had to leave Ed part way through Friday. Fortunately our booth mate, Allison, is  very capable and competent.  Drinking tons of water with electrolytes, eating molasses cookies (a remedy that I happened to stumbled on) and sleeping for almost 12 hours waking up only to drink more water helped me to recover quickly enough that I was able to work in the booth Saturday and Sunday despite rather low energy.

That episode was scary and sobering. I figured it was brought on by fatigue, stress and not staying well hydrated. The weekend before BSG was the annual Sister’s Rodeo when four of us spend several days/nights in Sisters. Staying up late chatting, putting puzzles together, knitting, singing, and playing board games was a great deal of fun. I love that time hanging out with these dear friends and going to the rodeo but by the time we returned home I was feeling exhausted and stressed at the thought of the final prep for BSG. I determined that going forward I wouldn’t schedule anything the week before a show and to take care to stay well rested.

The episode in Moscow was far worse than the one at BSG in ’15. I have no idea how high my heart rate was. My hands, arms and mouth were very tingly. Along with the nauseated feeling I also experienced chills, shakes, fever and overwhelming dread. I’ve since had two more bouts, none quite so bad though the last one, which happened in early October knocked me off my feet for four full days. By the fourth day I knew I had to see a doctor.

Meanwhile my old doctor had closed his private practice to take a position as a hospitalist. I was able to get copies of all my records the last day the office was functioning. The records were filed away in case they might be needed someday. For about seven years we didn’t have a doctor, nor did we need to see one. We try to maintain a healthy lifestyle to avoid doctors except as needed.

I hadn’t talked to my new doctor about it since I’d never been officially diagnosed and the symptoms can sound so flakey. So there I was trying to tell her umpteen years of history, how I could usually handle it with electrolytes but now it was getting much worse. Dr Jessica prescribed meds for my low blood pressure. I wore an event monitor for the past four weeks and will see a local cardiologist in a couple of weeks for the results.

While scanning copies of my medical records I read through them. Reaching the last page with the final notes from the good doctor I was stunned to read, “It is felt the patient has dysautonomia.” All those years ago I was given a diagnosis. It’s somewhat baffling that he didn’t mention it to me, or perhaps he did in a way that it didn’t register as anything to look up when I returned to work that day. During that time I worked in reference at the public library and often helped people look up information on diagnosis they’d been given.

It seems so odd that for the past seven years or so I thought I was self-diagnosed when all this time the word had been in my file.

The sobering thing is it seems that doctors aren’t very aware of treating dysautonomia. There was one cardiologist who’d specialized in dysautonomia who was at OHSU in Portland. Just several years ago she was making plans to set up a dysautonomia health center for research and patients, then suddenly she moved to a small town over 5 hours away, and she’s no longer on the dysautonomia specialist registry. Right now there are none in Oregon, that I’ve been able to track down.

One last story is of friend in her mid-thirties, another RN. Shortly after giving birth to her second child she started having fainting spells and passing out. Twice she was hospitalized but the doctors were mystified. They knew she had low blood pressure but why was she getting so sick? One day while listening to her tell about her health struggles all the red flags went up in my brain. I asked if anyone had mentioned the possibility of dysautonomia. I emailed her the link I shared above. She immediately started digging and was flabbergasted to read of so many of her symptoms. She’s the person who tracked down the specialist practicing in Portland at that time (about five years ago) and had a full work-up down with the resting diagnosis of POTS. She has been affected much more severely than I. Her episodes can knock her down for up to ten days, and she’s a tough woman who’s not a whimp about anything.

Here are two more articles for those who may be interested in learning more.
1)A peer review article through NIH
2) Article written specifically for a working group at Johns Hopkins Hospital

I hope this very long post in informative and even perhaps helps someone who may be dealing with vague symptoms that have been messing with their energy levels, or lightheadedness.

On the whole, I’m extremely thankful for the sound body that I do have!
Tomorrow is almost here. Thanksgiving. As late as this posting is I’m thankful that I don’t have a huge dinner to prepare, only a pumpkin pie and perhaps some rolls. Happy Thanksgiving to all who’ve read this far! May it be a day filled with blessings and gratitude.