January 31: 14 Years!

Fourteen years ago a tiny Sincere Musical Note Baby Mouse The Mouse also known as Sarah was born. Little did we know through what journey we were about to embark. We worked hard, especially Sarah, for each milestone. She crawled at 18 months and walked at 3 years. Now she is learning to swim. At age 4 1/2 she barely had any spoken language and I began running a Son-Rise Program, aka Sarah-Rise for her. Her language exploded and now we enjoy hearing her dulcet tones loudly reciting Goodnight Moon at 5:15am. For most of her youngest years we struggled mightily against a diagnosis of Failure To Thrive, working for each calorie ingested as we successfully strove to avoid a feeding tube. Now she fixes her own snacks and likes food. I used to wonder if she would ever have peer friends and I see the possibilities continuing to develop as she eagerly anticipates Google-Meets with her classmates. Sometimes they are so silly together that the teacher has trouble reining them in and I think that is wonderful. We have had and continue to have the most astoundingly amazingly wonderful people in our lives that we would never have met if it weren’t for Sarah. It’s been quite a ride. 

We have already been celebrating for the past couple of days with zooms and cake and musical notes. Amy came to breakfast this morning as a Musical Note Witch, wearing a black and white striped dress to which she added paper notes and her usual witch hat was adorned with notes. Sarah has delighted in the musical note wall decals, I Heart Music shirt with the letters formed out of notes, the musical note clock, and the Goodnight Moon game that she received from various family members. For the zoom with Carl’s family, he arranged it so everyone had a Goodnight Moon background. Sarah’s surprised delight when she connected to the zoom was so expansive it seemed she was one big smile. 

The kids helped make cupcakes and cake from one of our favorite recipes, but we learned that not all cacao powder is equal. Some is extra dark in color and flavor and so our baked goods are amazingly delicious dark chocolate. I ordered musical note toppers, which turned out to be basically inedible but they still look good. Sarah is delighted by her musical note plates, napkins, balloons, and happy birthday banner, along with her musical note hat that Grandma made to match her outfit. Now Sarah can truly be covered head to toe in musical notes. Sometimes Sarah strays from her musical notes shorts or pajama bottoms to wearing plaid shorts, but that is only when she is watching Mr. Greg Reads and wants to match his outfits. She also gets her own copy of the books so she can help him read.

A few days ago for Potions class we made a cake from one of Amy’s witch books. It was delicious and the kids decorated it entirely independently. They were generous with the blue food coloring and we all had blue tongues. It is exciting how much more independent they are getting in the kitchen when I can manage to loosen my desire for control. In the case of the cake decorating I was out of the house so that made it easy to let go.

Sarah came with me earlier in the week to pick up supplies at her school. Her teacher brought the other students down to wave through the glass door and Sarah’s teacher from a few years ago also came to wave. Sarah received a pack of cards that the students made, many of which are decorated with musical notes and cats. The principal called out a hello from his office. I felt teary with the kindness and celebration of Sarah.

We are surrounded by such love and I feel quite blessed.

Sending lots of love to all of you.

January 24: Headache Improvement!!

Amy is selling Girl Scout cookies this year, but not going door to door to take orders. If you live near us I think there is still time to order and select “girl delivery” and we can leave your cookies on your doorstep. That also means you have to wait longer than if you just have them shipped to you. Anyway, if you are interested, here is the link to Amy’s Cookie World:

https://DigitalCookie.GirlScouts.org/scout/amy112560

Sarah is eager for her birthday in a week and wants to open any and every package that comes to our door. She is not a fan of my opening packages away from her, but so it must be. She is also having lots of feelings today because yesterday her rage reached such a pitch that, at the end of a Zoom with Mom-Mom, she threw the ipad. She wasn’t mad at Mom-Mom. I don’t know what she was mad about, but she also crumpled some art Amy made and threw it in the trash. So no ipad time for Sarah today. Aside from that, the week was pretty good.

The best aspect of this past week is that my headaches have basically stopped aside from very low level traces. I (mostly) continue to adhere to my more limited range of food options and I received craniosacral work that felt impactful. But, the most helpful and directly correlated change has been beginning the Presence Process as described by Michael Brown in his book. I do two breathing sessions per day according to his instruction and there is a weekly thought to think whenever I remember to do so. That’s it. So simple and yet the results were profound. I quickly became aware of how often I was tensing and not fully breathing. It was waaaaaaaaaaaaaaaaaaaaaaaay more often than I would have guessed. I have even started to notice the thoughts that seem to bring on traces of a headache. Whenever I start thinking about planning/scheduling or even thinking about things I need to do, I tense myself. Letting go of that more often means that I feel like I forget things. I forget what I had thought I needed to do. I don’t know that I’m actually forgetting anything important. But it is fascinating to realize how I was using tension to help myself remember and keep things in my head. This is humbling and hopeful. I have had times of feeling more relaxed than I ever remember feeling in recent history, to the point where I think “OH, this is being relaxed! I had forgotten.” 

January 17: Favorite clothing and my continued headache journey

The nerve block on Monday helped lessen the severity and frequency of my headaches, but after a horrendous headache yesterday morning I am not feeling hopeful that the nerve block was effective as a cluster buster. One wonderful discovery was that if my headaches are below a certain threshold then doing some yoga (child’s pose, downward facing dog, cobra) clears the headache in about 15 minutes. What I learned yesterday in the wee hours is that yoga doesn’t work if the headache is over a certain pain threshold. 

Thank you to all who have reached out in support and with suggestions. I have contacted everyone suggested. I have connected with some and am waiting to hear back from others. I have also resumed reading The Presence Process by Michael Brown. He healed from cluster headaches and I had started reading his book the last time I had a cluster break through my normal level of medications. There is a lot of introduction and explanation about his process before you actually get to his process, so I had stopped reading before getting to the meat of things. I’m guessing the past cluster stopped by then too so I was less motivated/desperate. I am now going to do his program and follow his suggestions. I am tentatively hopeful. Over the years I have routinely been hopeful only to realize that what I thought was a cure wasn’t. But what do I have if I don’t have hope? Thankfully, last night was a good night.

Sarah and I had a good school week. I realized that we usually accomplish the main subject areas in about 30 minutes total. That is 30 minutes for math, reading, science, history, and writing. The science and history take approximately 1 or 2 minutes each. I write a sentence or two on a white board and she reads what I wrote. For science we have been sticking with praying mantises for the past many weeks. I’ve learned a lot. Did you know that a praying mantis has 1 ear? And that they are the only insect whose head can swivel on their neck the way our heads swivel on our necks? For history this week we covered a bit of George Fox and Quakerism. I suppose that could also count as religion. The rest of her day has a few live meetings and snuggle/nap/hickory-dickory-dock/sincere-my-dear sessions. She does some biking on zwift and some piano practice. And we often do art involving musical notes.

Amy has been at magic boarding school this past week so didn’t do her usual flying to and from school. She wears her new black dress and witch hat made my Grandma. Daily. Just as Sarah wears her musical note shorts and short-sleeve shirt made by Grandma. Daily. This is amazing and awesome that they love the clothes so much. I just wish I could get Sarah to part with the clothes for longer the length of her daily shower so I could wash them! I will say it cuts down on laundry to have them wear the same thing every day. Sarah even wears her outfit to sleep. And outside, regardless of the weather. 

May you have clothes that you love so much you want to wear them all the time.

January 10: Cluster Headaches Generally and Specifically and Awfully

I really don’t have much to say about this week other than it was overshadowed by headaches. Mama mouse, Baby mouse school house went well, even on Friday when I was downed by a terrible headache for about 3 1/2 hours. Luckily we had gotten most of our subjects done when it hit and then Sarah was very kind and patient and even did her math all by herself. 

Most of my daytimes really were good and I had two nights that only had two headaches each, lasting only 30-60 minutes so I was feeling hopeful. I was thinking maybe all of the dietary changes I made were helping. No sugar, no chocolate, no caffeine, no dairy, and no gluten. Celery juice and magnesium daily. Breathing more fully more often. Making sure I drink enough water. Yoga every morning. And no way to tell if anything is actually helping! I know many of these are good to do no matter what, but some of them certainly make some moments feel harder. I’m scheduled for a series of injections in the back of my head tomorrow morning to hopefully function as a nerve block to help my system reset. I intend to continue with most of my lifestyle changes anyway, but I wonder for how long. 

When I share with people about my headaches there are often questions. Here is what I know. On a continuum of headache varieties, clusters are put at the farthest end of the worst. They are called the suicide headache. Clusters are rare as headaches go and even more rare for women to get them. Sometimes people with clusters can’t have jobs or maintain relationships. The headaches usually come in the night, so a person wakes up feeling like a knife is going through their eye to the back of their head or their head is being carved out by lightening. For me it is always the right side and it feels like my upper right back, right neck, and right side of my head are on fire. Sometimes massage and touch help. Sometimes they make it worse. It can seem appealing to smash my head into something hard to make it stop hurting. It is hard to be still. Sometimes a headache lasts 15 minutes. Sometimes 3 or more hours. Sometimes mine last longer because they decided to take on migraine attributes too. They are called cluster headaches because they come in a cluster of time, daily/nightly for 4-6 weeks, usually. Except when they shift to being chronic and then the cluster doesn’t end. Mine are chronic when not controlled by meds and this cluster has broken through my usual level of meds and persisted through all of my attempts to stop the cluster. I don’t know when they are coming and the onset can be sudden, especially when they come during the day. I expect them to happen almost every night and try to find just the right position to help ward them off. I am scared to go to bed even though I know I need to sleep. It is miraculous if I have a night without a headache. Sometimes the zomig nasal spray works to clear a headache in 5-15 minutes, but if it doesn’t work within that time it’s not going to work. It is approximately $100 per zomig spray up my nose!! I am still waiting for the emgality injections and every party working on it seems to be doing their part and yet… I have nothing and it has been weeks since my doctor prescribed it. 

I appreciate all of the concern and compassion that has been forthcoming. I wish that doctors and insurance people could add a similar level of compassion. I wish that in addition to telling me things will take longer they could also say, “I’m so sorry you are in such pain.” 

When I’m not in pain then I feel either normal and great or completely worn out from having survived a headache. I’m so tired of this. It is physically, mentally, and emotionally draining. 

On the plus side of things, Sarah has been reciting Goodnight Moon to me every night in her room with great enthusiasm. When she says, “goodnight socks” she delightedly picks up her foot and points to her sock. She also calls me “Mommy Sincere.” Amy continues to enjoy being a witch and has been beating me in a game of Catopoly. 

January 3: Musical Notes, Witches, Rainbows, and Headaches

We are home from our travels, and we saw a double rainbow on our drive which I take to be a good omen. Our first night driving back was spent at a tiny RV park that had a pond and geese a few feet from where we were parked. The second night of our journey was the only night we ever arrived anywhere before 7pm. We had a beautiful view of the sunset in the mountains of West Virginia. Yesterday we got home by 11am and were so glad that we decided to give ourselves a day and a half at home before school and work officially get going again. 

During the drive, Amy drew wonderful things including a color-by-number mouse for Sarah to color. There were guides to the colors that matched Amy’s colored pencils and then she left the mouse’s shirt blank so Sarah could make the choice. Sarah gave the mouse a musical note shirt, of course. Amy also drew a musical note witch among the many varied witches that she produced.

Sarah was delighted by the flannel musical note pajamas that Carl ordered, as well as the Goodnight Moon art prints he found of a cow jumping over the moon and of three little bears sitting in chairs. At bedtime last night she wanted to put on a Goodnight Moon play. This consisted of her reading her beloved book while  moving around her room pointing to the items that are mentioned in the story. 

My headaches cast a shadow over things at the moment, at least for me and probably for Carl too since it is awful seeing a loved one in pain and not being able to fix it. Rubbing my neck and back sometimes fixes it but sometimes just temporarily pauses the pain and then as soon as he stops the pain pulses back. Last night was awful and the headache only cleared enough (after about 2 hours) to let me sleep but never all the way. At least when it is at mid-level I can sleep or function in life. I have used all of my zomig nasal spray and don’t get more until the 7th. It doesn’t always work anyway. Meanwhile, when I called to check on the injection medication emgality, I was told that the previous recording informing me it would be ready yesterday was incorrect. It is stuck in insurance limbo waiting for prior authorization. I am frustrated that nothing seems to happen until I get involved but no one ever tells me the moment at which to get involved. I am frustrated that insurance companies seem to think it is worth the money they save to push back against what a doctor orders. I wish all of these decision makers who make things so difficult could experience a cluster headache just once. A bad one. 

A friend connected me to someone who healed from chronic daily awful migraines. I also have a book by someone who healed from clusters. It seems like a lot of components went into healing and part of it was dietary changes and part was healing from trauma. This feels both hopeful and overwhelming of how to even begin finding the right people to help me heal from whatever it is I may need to heal from. I do know a ton of bodyworkers, but I still feel like I am stuck and don’t know what to do. Being sleep deprived and often in terrible pain doesn’t really set me up to not feel overwhelmed. Covid crap also doesn’t help me feel like now is the time to make many appointments. For the moment I bought celery to juice (recommended by a friend) and I will not have any alcohol (rarely do anyway) and I am cutting chocolate and sugar (ack!!). 

Carl and I watched “The Social Dilemma” last night. If you haven’t watched it, I highly recommend it. We are changing things at home so we will have one charging station for all of our small electronic devices and we will have all of us spend less time using them. We did limit how much the kids got to do daily, but sometimes more time snuck in, and I certainly spend more time on social media than I would like to going forward. With everyone at home almost all of the time, I don’t actually need to be reachable every minute of the day. Maybe just every third minute. 

Lots of love to all of you. May you be surrounded by your equivalent of musical notes.