December 3

This week has had some profoundly wonderful moments and some extraordinarily horrible moments. The headaches have been the horrible ones. Thursday night was one of the worst nights of my life. It was not only the intense pain. It was that after 1 1/2 hours of intense pain I felt adrift in panic and despair, feeling that the pain would never cease. I was downstairs and crying hysterically at 3 am when Carl came to find me and helped me at least stop the panic and hyperventilating. Eventually at 5am I was able to sleep for a short bit, but then at 6 am it was time to start the day. Carl helped get Sarah ready so I was able to rest a bit more. I am remembering 2 years ago when I similarly thought I could handle the cluster and hoped that if I didn’t take meds then maybe it would only last 6 weeks instead of going on longer. I was wrong. The problem is, if I don’t start the Verapamil when the beast is small then it becomes too big to stuff back in a cage without something extra beyond Verapamil. 2 years ago I got shots in the back of my head. At the time I dreaded it. This time, if it comes to that, I will go willingly. Or I can do a steroid. Or maybe the Gammacore new thingie will actually work if I can get it. Things are moving slowly and frustratingly to get it. Insurance won’t cover it because it is too experimental. I can pay for it myself but once it is activated it will only work for a month whether or not I use it. And it is $500 for that month. Argh. Still. At this point I am getting desperate. I have read that many women say clusters are worse than childbirth. I always thought they were similar because childbirth was really freaking painful. But with labor I knew I was getting something good at the end. With labor there were breaks in between contractions. (And then the wonderful blessed epidural.) With labor I knew it would end and then I would be done, rather than needing to go through it night after night for unknown lengths of time. So, yes, I second that feeling that clusters are worse than childbirth. I have known of people going to the emergency room for headaches. Thursday night was the first time I contemplated such a thing. So, yeah, it was really really bad. 

What is odd and mostly good about cluster headaches is that they happen at night. So if I wasn’t telling you about them you would usually have no idea that I was dealing with them (unless you are my friend who has seen me dropping off Amy while still in a fog of pain). Once they clear then I go on and do my normal day. I may be tired but I can still do my life. And that life has had some really amazing things.

When I get a good night of sleep with no headache then I feel amazing. One morning as I was attempting to get Sarah ready for school and we were about to go into some of our normal patterns of resistance, I realized that I needed to change my frequency for my message to go through. It was as if I had been dialing the wrong phone number and that was why I was getting a busy signal in Sarah’s field of attention. I changed to asking Baby Panda to take a bite of her bamboo bagel so she could be ready for the Panda van. My call went through instantly! I had the right number. She looked at me, connected, and did as I asked. 

Sarah and Amy played many rounds of Connect Four in a row with hardly any assistance or intervention needed. AMAZING!!!!!

Sarah has been singing a lot more in general lately, especially singing along with some of her favorite songs. She seems to have a new love of Adele, especially “Someone Like You." She and Amy also sing “glooooooooooooooooria” from “Angels we have heard on High” loudly and longly.

Amy moved up a level in swimming! She is now a Turtle One.

I had some really wonderful teaching and massage moments. Thanks to experiencing Carl’s calm holding of my person during my headaches I have learned a new level of being for my Alexander teaching. I am comfortable waiting so much longer in any given area, really waiting until I feel the change I am seeking. With Carl and with J. I have experienced such kind, comforting holding of my being that I feel that intention coming more strongly than before through my hands as I give a massage or teach Alexander. I am more in my person, more in my presence, more in my kindness and compassion. I am trusting what I perceive more than ever. It is noteworthy that this new level of connection is perhaps due to my headaches. What has also been amazing is noticing how much more fully I can accept and take in comfort and letting go into being held than I could before. I thought that I was already there and then I invited myself to let go even more and I did. There are probably endless levels of this letting go, accepting love, connecting more fully to another, and offering love and presence. I love my work so much and I am so deeply blessed by incredible support from all around, whether in person or on the phone or via email. So much love and support. I could perhaps let go even more into feeling it.

May you never know a cluster headache. May you experience deep love, support, and ease in your whole being.

November 26

I marvel at where we are sometimes. I marvel as I watch Sarah listen to her piano teacher, watching what K. does, and doing her best to do the same. I marvel as I watch Sarah play with Amy, engaging ever more in what might be labelled normal play. I marvel, not because these moments are new, but because there was a time when we didn’t know if they would come. It is good to keep the amazement fresh and crisp.

I marvel at how awful my truly awful headaches are and how I can somehow forget. I forget because as they ramp up in the cluster then I experience really bad ones and I somehow think they are the worst and that I am managing. Oh no. Not by a long shot. I wrote a short poem to help myself remember. Please hold me accountable if you ever witness me thinking I can handle a cluster on my own again. I can’t. It is also no good for my family. Give me my own words back. 

I forget

I always forget

just how bad

how impossibly

unimaginably intensely horrific

pulsing through my sleep

waking me with a warning

or a full blown attack

a knife through the eye

lightning through my brain

my legs run miles in unstoppable movement

trying to outrun the pain

I cannot do this

but what choice at this moment?

never

never

never again 

will I try to endure

will I think I can

forever more I must remember 

no more waiting

There can be no waiting to start the Verapamil. I cannot thank Carl enough for being with me in the middle of the night so many times, multiple times in each night, holding me with calm hands that somehow sometimes miraculously put the beast back in the cage after half an hour, as if it had never been. He becomes my Alexander teacher, helping me find my alignment when my pain takes me into the worst crumple. Thankfully, now I can marvel at the efficacy of Verapamil. I have built up to my medium dose and already there is improvement. Two nights ago was bad, but not at all the worst. Last night was headache-free. 

Our Thanksgiving break has been lovely. We are catching up on sleep. We are sorting through toys and books, making a huge pile of things to donate. Not that you will necessarily be able to tell. We still have too much crap.It is a marvel! Amy can make decisions and agree to donate things. Sarah would choose to keep everything because she loves having everything she can ever remember. Unless she is playing with an electric train set and then she is distracted and agrees to donate everything. I try to be careful in my decisions so that nothing Sarah truly deeply loves would go. Anyway, it is wonderful to have a staycation and be able to do house things that have been waiting for years.

We also went to an ice cream parlor with Sarah! There is one in Lawrenceville called NatuRoll. They have non-dairy options and if you have allergies then they take extra special care. Sarah’s ice cream station was completely cleaned before they made hers. 

I hope you had marvelous Thanksgivings.

November 19

Sarah brought down the house. At her piano lesson on Monday the song they were practicing involved saying different names after saying who you were talking about, such as “say my mother’s name… Jenny.” Amy had her turn first and when she had the line about her father’s name she, of course, said, “Carl.” When it was Sarah’s turn for the same line about her father she instead said, “Daddy Panda!” The teacher, Mom-Mom, Amy, and I just collapsed into laughter. It was so perfect and so unexpected.

Instead of making it to swimming on Friday afternoon, the girls and I spent over 2 hours in the car trying in vain to get to their lesson and then trying to get home. Evidently there was a large (10 cars and a truck) accident at our usual exit. We got off at the next exit but after waiting in long line of traffic and thinking we could get through to where we wanted to be, we were given no choice but to get back on the highway and crawl 2 miles, taking 45 minutes. We had already missed the first and second swim time options by the time we exited the second time so were just trying to get home. I was tired of being trapped on a highway and thought we could go through the business district to get to some alternative routes, but that attempt was blocked as well. We drove back the length of the business district to get on the highway again and got home easily in 15 minutes. We were sad to miss swimming but I am grateful that our timing was such that we were not in the accident.

Yesterday morning Sarah transgressed against house rules by going outside in pajamas. Amy wrote her a ticket for her bad behavior. The ticket shows a picture of a sad panda holding a ticket and it says, “going owtside in pjs with no cote on a rane morning.” (going outside in pjs with no coat on a rainy morning)

There are many times that I am caught in feeling grumbly or tight about the kids and their behavior when Carl is able to somehow sidestep and creatively meet them in a way that honors where they are and encourages them to get wherever or however we want them to be. In these moments I have known I was about a minute away from screaming. Yesterday I was feeling overloaded by the mess in some rooms of the house, by the number of things we still wanted to do in the day, by being hungry and needing to get dinner, and by having a hungry cat walk directly under my feel when I was trying to get to the kitchen to feed her. Carl took charge of getting the girls to help clean the front room while I worked on dinner. I could hear him asking Amy to help and she was getting distracted with wanting to do other things. He explained to her how that was feeling for him. She got upset because cleaning didn’t feel like fun. He suggested they could make it fun by pretending to be cats putting things away. The day was won! After the cleaning I heard riotous laughter as Carl pretended that Sarah was a guitar, strumming her belly, and that Amy was a trombone, using her legs as the trombone parts. And that was after giving them each lessons in tying shoes! I am so repeatedly impressed with Carl’s parenting, my heart feeling so full it is overflowing with marvel and appreciation. 

I have been having some tremendously bad headaches. Wednesday night/Thursday morning was the worst yet for this cluster. It was so bad that as I put Sarah on the bus and walked Amy to school, people asked if I was ok. I was barely functioning (Carl was out of town, otherwise he would have gotten the kids where they needed to go). After I got Amy to school I went for a brisk walk, and as I walked I went through my Alexander directions nonstop for 20 minutes. By the time I got to my destination I was feeling better. I still had the residue of a headache all day, but it was so much better. When Sarah came home the first thing she asked was if I was feeling better! She may have thought to ask because her driver had also asked me, but still, I thought it showed amazing awareness and thoughtfulness.

I have had more awful headaches since then. While I was wanting to hold out for the Gammacore, last night I realized that didn’t make sense. I started my verapamil. When the gammacore comes, if I get a whisper of a headache, I can try it and maybe determine in that way if it works for me. Or maybe it will come soon enough that I’ll still be getting headaches. Hopefully not full-blown ones. I feel simultaneously like I failed in my goal of holding out for the gammacore, and also completely stupid for having waited to start the verapamil, putting myself through such agony. I have been dreading going to sleep at night. It’s no good. I feel like waving a little flag of surrender and saying, “fine, I’ll be on verapamil for the rest of my life.” Last night was a good night. No headaches. I had a whisper this morning but that was all. Sometimes I get a reprieve like that even when I’m not on any meds, so I don’t know what my coming nights will be like. It takes time for the verapamil to build up in my system enough to be fully effective. It takes time to titrate up to the full dose. Despite being disappointed to need to be on anything, I am so glad that there is an option for me that works. Now on a different note...

What does a cat use to mow the lawn? ................................a lawn meower! 

Amy told us that joke yesterday and we cracked up. I believe the original credit goes to G. 

November 12

The second piano lesson for the girls went beautifully. Each girl had about twenty minutes individually and then they shared an activity at the end. I seriously cannot imagine a more perfect teacher for beginning piano students. The girls practiced what they had done once but haven’t wanted to since then and I am hesitant to push anything.

Swim lessons went well too. This was the first week of both girls being minnows, although I think Amy will move to the next level soon. She was doing all sorts of new things or the usual things but more independently and confidently. Sarah floated independently for about ten seconds but the rest of the time she wanted to hold on to the teacher while floating. Hilariously, when he told her to dip her head in the water including her eyes, she angled her head so as to only dip one eye.

I can’t think of much else for the girls. Mom-Mom and Pop-Pop are visiting and there have been some lovely and sweet times with them, but Sarah has also just been having a rough couple of days with lots of screaming and whining. I don’t know if this is because she is getting sick again or something else. Part of me wonders if she is being my canary and just expressing my struggles because I’m certainly not in top form this week due to headaches.

Every time I think I have something figured out about my headaches I am proven wrong. I know nothing. Or I know a lot but it is a moving target and what works one night might not work the next. I have had at least three nights with a terrible headache in the middle of the night that lasts an hour or two and then finally I can sleep more, and then I wake with another one. Then I have a headache hangover for some of the day. Then I feel scared to go to bed at night because it feels like ushering in my doom. What might seem ridiculous is that I have a bottle of Verapamil here. I could start it any night. It would take a few days to get into my system enough to make a difference but then it would and the headaches would go away. Then I would feel frustrated that I don’t actually seem to be capable of going without meds. Not that I think I am supposed to withstand the pain, but I had really hoped that I had figured out a way to not have the pain at all. This is twice within the past year that I have gotten off of the meds and then the headaches came back within a month or two, usually following being sick. When I first got the clusters in college they lasted about 4-6 weeks and then would be done. That was the way of it for many years so I could sort of handle the horribleness because 1) for a while I didn’t know there was an alternative and 2) I knew it would end. For the past handful of years the clusters haven’t ended and any given headache can last much longer than they used to, which is why now I am said to be chronic and with migraine tendencies (the duration). I am waiting for the paperwork from my doctor to try a new thing called Gamma Core. It is an external, hand-held device that can be used to stimulate the vagus nerve and thus interrupt the headache. It is specifically to help people with clusters. I know it might not be my final solution but I am stubbornly waiting to get it and see if it helps before deciding whether or not to go back on the Verapamil. Sometimes Aleve helps a bit. Sometimes it does nothing. Sometimes Advil helps. Sometimes it doesn’t. Advil isn’t supposed to be a good idea because there can be a rebound headache, but that didn’t happen yesterday when I tried it. Sometimes I can marshal all of my reserves and have good Alexander use and do constructive rest and do trigger point work and drink a ton of water and think positively and stay hopeful. Other times I just give up and I have nothing. All I can do is just exist and wait and whimper and keep moving and rubbing my head and neck until somehow the pain subsides. I haven’t yet looked with longing at the bathroom sink, wanting to bash my head into it because somehow it promises relief, so that is something. Still. This sucks. On the plus side, Sarah’s chin presses feel great on my head, especially during a headache. Also, if I didn’t have my clusters then I wouldn’t have found J to help and I wouldn’t have gotten as immersed in and passionate about neuromuscular therapy, thus involving me more at the massage school. So those are two very positive things to come from the headaches. However, dear Universe, if it is all the same to you, now that I have received my blessings it would be ok to remove the headaches.

I hope you are pain-free or that there are blessings in whatever pain you are experiencing.

November 5

The girls had their first piano lesson on Monday. It went well and I also think it is good to have them sharing the lesson time. Amy gets anxious about doing things right the first time (I have no idea where she gets that) and Sarah doesn’t seem to mind at all if she doesn’t get something right away. Amy was in tears early because she couldn’t copy a clapping pattern. So Sarah took a turn while Amy snuggled with me. Then they took short turns with everything after that. Such a lesson format isn’t usual but I think it may be the perfect way for my girls to start. I am also glad that Carl is excited to help them with their practicing once we get to that point. My piano anxiety from years past was instantly back in action just about helping the girls practice so if I can get a pass I will take it!

Halloween was cold but the girls still managed several houses for trick or treating. They both decided to call it a night at the same time. Well, actually, Sarah wanted to be done immediately, but we encouraged her to do more so she wouldn’t want to go out a second time after everything was over. How can people be so small and so grown up at the same time?! Sarah was as flexible as usual about my swapping her collection for things she can actually eat. This year I even had small store-bought chocolate bars that she could have. Enjoy Life makes the chocolate chips we use and this year they made Halloween chocolate bars.

Jack-o-lanters happened the Thursday after Thanksgiving and it was definitely easier with Grandpa’s help. Amy carved a cat face and Sarah made circular eyes and a mouth.

Bunk beds! Grandma and Grandpa brought bunk beds and the girls are super excited. The miracle of all miracles was that when asked which bed they wanted each girl said a different answer so there was no fighting. Amy wanted the top and Sarah wanted the bottom. We also now have a second dresser. How did we live so long without two dressers?! No wonder the drawers of the previously shared dresser used to be so ridiculously packed. 

Swimming didn’t happen Friday because that was the day all of us went to the doctor. I had been starting to think I should get us all checked for our coughs that wouldn’t go away even though we were otherwise fine or just a bit run down. Since Sarah didn’t have school it seemed like a good thing to do with our time. It turns out that she had walking pneumonia. We got her meds and headed home. Fortunately, Grandpa was visiting and didn’t have plans. I left Sarah with him and called Amy’s school to say I would be there in five minutes to get her. She was in tears because she hadn’t expected an early dismissal. I was pretty sure her diagnosis would match Sarah’s and I wanted to get her on the mend just as fast. We saw the same doctor, received the same diagnosis, got meds, and then I left her with Grandpa while I went to work. After work I went to the doctor and was diagnosed with bronchitis and given antibiotics. Carl went to the doctor after work and was also given antibiotics, presumably for walking pneumonia. Sigh. Here is the lesson: If you have a persistent cough but are otherwise ok, it might be walking pneumonia! I am reminding myself that this just means we all had something now. It doesn’t mean we are doomed for the season. The fact that we all were functioning so well is perhaps a testament to strong immune systems. 

Frustratingly, my cluster headaches have started again. Mildly but unmistakably. What I don’t know is if my two months with no headaches and no meds was just a fluke of luck or if it was due to my trigger point work. I did stop working on myself so regularly when I wasn’t getting any whispers. I have started working again in earnest (which means maybe 2 minutes of work several times a day) but I’m still waking with headaches. Doing trigger point work in the midst of a headache isn’t the best because everything is so sensitized. I just have to calm my whole system and do gentle massage on my head and neck and tell my feet and legs to relax. When I don’t actively have a headache or only have a whisper is when I can do the trigger point work. I haven’t started meds again yet. Weeks ago I had a real headache and thought I was starting a cluster but then I didn’t. I am hopeful that somehow I can get this cluster to calm down and go away. It is hard not to panic a bit, especially at 3am, but I am also stubborn in my hope of curing myself and not needing meds all the time. 

I hope you are all well and have all the dresser space that you need.

October 29

Sarah did a lot of floating by herself in her swim lesson! She is now officially a Minnow! Amy has been a minnow for a while but they were letting her stay in Sarah’s Starfish class time because that was so much easier for us. Now we have to move to a different time slot so my fingers are crossed that we can make it work to leave immediately when Amy gets home from school on Fridays. If that doesn’t work then we will have to find another day.  There are lots of options if I’m willing to change our location and teacher but I’m going to do all I can to stay with the same teacher.

I went to Philly on Thursday to hear one of my favorite authors speak. Glennon Doyle, formerly Glennon Doyle Melton, has written Carry On, Warrior and Love Warrior, and both books are beautiful and raw and honest and amazing works of heart. There were other women also speaking. Most of it was super wonderful and beautiful and inspiring. And then there was a tiny bit that was generalized, meant-to-be-inspirational, you-should-speak-up, you-can-change-the-world stuff that actually didn’t work so well for me. Sometimes that just has me feeling like a bad person for not doing more, more, more or being a different person, even though their whole point was to be our true and beautiful selves. I love my life. As it is. I have already been following my truest and most beautiful path as well as I can. I feel like I do good work in the world in my small way and I hope it has ripples. I am so happy and so blessed so much of the time. I don’t feel like I need to push myself in some new way. Not that they were necessarily saying I should, and even if they were, what then? I am the one interpreting all of their words for me, so maybe this just shows me where I still pressure and judge myself. Anyway, the most inspiring and beautiful parts of the presentation were when the women told their specific stories. Thus, onward with my specific stories.

It was lovely to have another short trip on my own. I got to see all four of my parents, my brother, and a family friend. I also got to sleep in. When I woke Friday morning and saw 9:30 on the clock I thought something must be wrong. I never sleep in that late! My mom went with me to the show and we went to French Creek the next day. French Creek is a beautiful state park. I used to camp there when I was little, and I will always be on the lookout for a small Annie doll that I lost there. The most peculiar thing this time was how much smaller some of the park features were. The dam wall was really much smaller than it used to be! The other strange thing was that we saw three dead moles, each in a different location. Not eaten but definitely dead. Any thoughts as to what would make this happen? Anyway, I was originally to return today but when the airline contacted me to offer a free change in plans due to the inclement weather expected in Philly today, I took their offer and came home yesterday. This worked perfectly so I could attend some Halloween parties. 

The funny thing with one of the parties that I so much wanted to attend is that I really just spent the whole time shadowing Sarah. I didn't interact much with that many other people. And yet, it still means a lot to be able to go and to facilitate Sarah being there. I probably could be less attentive, but I want to make sure she doesn’t double dip her pita in the hummus, for example. I want to be sure she doesn’t accidentally have something with dairy. And perhaps old habits die hard. She didn’t interact with the other kids much, which is not new, but she did have a good time. Amy joined the other kids for activities and also had a good time. So a good time was had by all. I let them stay past their bedtime and when I said it was time to go they only resisted for about 10 seconds. Then they very easily went home and got into bed. Costumed for the party, Amy went as a witch, Sarah as a business woman, and I was UnBeelievably Fabulous, wearing what we call “the bee suit,” which is a full-body yellow and black extravaganza that I found at a thrift store while in college. Carl was unfortunately home sick in bed.

Earlier in the week Amy wrote me the most adorable note. It said, “I am sree for being a  grup,” meaning “I am sorry for being a grump.” When I showed it to Carl he asked if Amy had been a grump earlier in the day. I said, “Well, as you know, the ladies of this house tend to have grumpy moments every day…” That is true. I’m glad we also express our love abundantly. Carl and the girls surprised me at the airport yesterday when I landed, and Amy climbed all over me. Sarah was grumpy about having to stop riding the escalator at the airport so first she had to get her grump out and then later she gave me hugs about being home. Olivia was also excited to have me home because she slept next to me in bed, which she usually doesn’t do.

Love to you all.

October 22

While talking to my mom I realized that there are many areas of life that used to be challenging that are now easy. School mornings, getting out of the house to get Amy from school, and bedtime. I don’t even remember when some of these things were hard except that I know a year ago they were.

We all have colds in varying degrees of intensity. I find it hard to stay present with the reality that none of us are terribly sick and that we will all get better. Last year had so much ongoing sickness that I feel like I’m entering a tunnel now and will only emerge in May. I hope this year is easier.

Assuming everyone is well enough to go to school tomorrow, I will have Sarah’s IEP meeting in the morning. Counting objects with a one to one correspondence, addition, interacting with peers, and attending for more than 10 minutes in a neurotypical class are her most challenging areas. What is exciting is that she tests at a first grade level for reading. Seriously. That just knocks my socks off. I know that she can read well and has been able to for a while, but to have it measurable at a grade level just below her actual grade seems stunningly awesome. I also feel incredibly blessed that I love Sarah’s school team and I know they love her. I don’t feel like I need to fight for anything or push for anything. I expect tomorrow will be an easy discussion of how awesome Sarah is and brainstorming any extra ways to help her.

Swim lessons have finally started again after a long hiatus due to pool repairs. Both girls jumped in right where they left off, and this coming Friday Sarah will be moved up a level!!!!!!

Sarah’s latest favorite game is for us to be sad pandas. Apparently when a mama panda is sad she says, “panda, panda, panda.” That is what Sarah informed me when I said I didn’t know what sound a panda makes.

Sarah has been helping Carl put a new floor in the treehouse. I love how much she likes doing projects with Carl and how much he teaches her to use tools. Amy also likes to participate but not as much as Sarah.

Amy pulled out my beginner piano book from when I was little and started playing notes (not following the actual music) while singing the words. When I asked if she wanted piano lessons she gave an enormously excited “yes!” Luckily I already know exactly the teacher I want for her (and maybe for Sarah if she is also interested). A friend of mine gives kids piano lessons and is an Alexander Technique teacher. How perfect is that?! I am hesitant to add yet another thing to our week but I also want to follow Amy’s excitement. If Sarah is interested then I want to make that happen too in part because her vision therapist is always saying that vision is rhythm. Sarah already improvises on the piano and it is surprisingly good.

Jeans. Those of you who know Sarah well know her love of jeans. Other peoples’ jeans. Recently she asked me for a pair of her own. She loves them!

I hope you are all well.