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.