Choose wisely…

The truth about life is that is all comes down to choices.

Some choices we make for ourselves, some choices others make for us, and some choices are completely out of everyone’s hands.

My life has been all about forced choices for the last few years as my health has taken one unexpected turn and another. I have had to learn how to manage my depleted energy levels in a way that lets me be a good mom above all else. Sometimes I have succeeded, other times I have failed.

This week I faced the biggest choice of my career since applying for law school. I argued my final hearing as a litigator.

I love litigation and I am very good at it but the fact is the amount of time and stress that goes into litigation isn’t healthy for me. My doctors are busily telling me how much I need to rest and relax while I spend ten hour days playing chicken with opposing counsel on pre-trial settlement agreements and frantically piling up every argument I can think of to support my client’s claims. I end up wrung out, exhausted, out of spoons. It takes days of rest for me to feel up to normal life again.

So I made a choice. No more litigation. As of now I am stepping out of the adrenaline spiking, endorphin rushing, sleep depriving world of litigation and into a fairly predictable job. I’m also starting at 10 hours a week until I feel I am able to handle my neurology, dental surgery, and physical therapy appointments and meet a regular working schedule.

I feel angry that I have to make these choices but lucky that I have choices to make. I have a supportive boss who held my position for me and will let me take the time I need to heal before I increase my hours. I have family who support me while I am healing. I have a partner who loves me, limitations and all, and who works with me every day to get better.

I feel lucky that I am able to choose to be healthier. To focus my energy on healing and managing my health instead of having to do what is immediately in front of me.

I feel lucky that I am able to choose wisely.

And now we are eight…

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Oliver turned eight with an indoor camping sleepover Wii party. He and three friends spent the night battling Kirby’s enemies, eating ravioli, and topping their tummies off with a sticky fruit tart.

This morning saw bacon and pancakes and then a walk to the library for some sun and creative play. The wind blew mightily as the fearless trio ran, jumped, and climbed with the Kirby stuffies in tow. At the library they took over the pavilion in the children’s section and built a variety of obstacle courses.

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Oliver said it was exactly how he wanted his birthday to be.

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Happy birthday young man!

Spooning…

How are your spoons?

It’s a question I get asked a lot now that family and close friends have begun learning the new lingo. For myself, I have been getting used to managing a chronic medical illness and the attendant drop in energy that goes with it.

Sometimes I push too hard, such as preparing for Dan’s 40th birthday party. When that happens my body immediately lets me know. I find the next day it’s nearly impossible to do much more than mere basics.

I am, however, managing.

I found a three year old non-profit focused on educating the general population about migraine disorders and finding funding for more treatment options. I joined it. I am applying what I learned in the hospital to my life, I am working to get the treatment plans moving forward. I am managing.

MHNI uses a 0-5 pain scale for migraine, with zero being none and five being debilitating. For the last five months I have had a four or five headache nearly every day. Since the hospital I have stayed at a two or so with only two fives. It’s an improvement. I’ll take it.

Since returning I have increased my daily activities. I played with my kids over spring break, I cook, I clean. I have a bit more energy each day, unless I spend too many spoons and set myself back. I am hopeful.

There are still stressors. I get frustrated with my lowered energy level. It sucks the talking and laughing can cause my jaw to hurt. There is still a small voice inside me that screams out “It’s not fair!!”. On the other hand, I beat Batman 2 on the Wii with my young man yesterday and I got my young lady a gorgeous new silk blouse at the thrift store with my mother. I walked the dog, I sat in the sun, I plan to start gardening, and soon, return to work.

It’s going to get better.

There’s no place like home…

After two days in the car with Dad, Dan, and Tracy, I am home.

It’s odd to be back in the real world after 12 days in the hospital. Everything seems a bit daunting. I am still learning to marshal and manage my energy and I don’t quite have the hang of it.

For example, we took the kids to the park today for a picnic and a little frisbee and that was all I could do for the day. It was time well spent but it knocked me right into a rising headache pain level. When I got home I had to take an abortive and rest. I’ve been resting since.

When Oliver asked when I could play more games with him I taught him spoon theory. I think he mostly got that I have less energy than he does and I have to be careful spending it. He suggested we play games first thing tomorrow so I don’t use a spoon getting out of bed and coming down to breakfast. He also told me he would manage my spoons for me. I am thinking I will be spending a lot of time on the Wii if I let that happen.

Tomorrow I tackle laundry, a little work, and some garden planning, depending on the spoons. I am also going to join the American Headache and Migraine Association and write to my fellow MHNI patients. It meant so much to find people who understood exactly how I feel most of the time, it was the best part of being in the hospital.

For now, good night! Thank you all for the kind notes, cards, texts, and emails during my hospitalization, it made me feel less afraid and more loved.

8 days and counting…

It’s been one week since they admitted me,

Took pictures of all the nerves inside me,

Two weeks since we jumped the plane,

we’re still waiting to see when I get to come home again.

Good evening. I am still here in lovely Chelsea Michigan trying to find answers to our questions and possible treatment plans for this, apparently, lifelong medical illness.

That is the biggest change resulting from treatment thus far. After attending several classes with the treatment team it has become clear that there is no cure for migraines. That there are three types of patients in every medical condition group. There are patients who are easily treated with one or two medications as outpatients. These patients experience few side effects from their medications and manage them throughout their lives with these few meds.

The second group has side effects from the medications that they try and may need more of them working together. They may spend months or years working with doctors to find a treatment that helps them manage their migraine condition.

Then there is the third group. The group that doesn’t respond to medications or treatments. All our tests come back normal, everything looks fine, but we live more than half of every month with headaches bad enough to ruin our lives. We are less fun parents, less able co-workers, disappearing friends. We try medications, surgery, atypical treatment, and so many doctors it’s impossible to actually remember who we saw when. We suffer from side effects and get no response from the meds. For whatever reason, our brain chemistry is such that we have chronic persistent migraine that will not respond to treatments.

I belong to the third group. I am 8 days in and we are only slightly closer to discovering a treatment plan. We have tried over a dozen abortive medications, a series of IV protocols, and several cervical blocks. I have another tomorrow. We have learned my neck is a contributing factor and we have found a couple of medications that help bring the daily headaches from a severe to a moderate. It’s progress.

It’s also scary and frustrating. I have managed my headaches since I was twelve. It is scary that they have changed so drastically  in the last two years and that my usual methods don’t work any more. It’s scary that I am going to have to manage my condition like it’s diabetes or epilepsy. I will have to sleep at the same time, eat at the same time, wake at the same time. Take a terrifying amount of serious medications with side effects that will have management issues on their own. I will have to reduce foods, alcohol, etc.

I am not coming back from this the me I was before it began. I am not ever seeing that me again. That boundless energy I used to use to tackle everything that interested me, I won’t have that anymore. If I do get it back, I can’t use it the same way. I have to use my spoons wisely and carefully every day in order to minimize the risk of a severe migraine attack.

The doctor teaching the class said the hardest thing about migraine conditions is that society puts the burden to cure them on the patient. She’s right. No one asks a diabetic when their diabetes is going to go away or be cured, but I get those questions all the time, even from doctors. She suggested we reframe our experience to help inform people it’s a lifelong medical illness, not a headache.

Maybe it’s the sheer number of needles I have had in my body this week, or the sedation, or the protocols, or the meds, but I am very tired. I can’t comprehend a future with this much conscious living. I have to prepare for it, but I can barely focus on the concept. I am so tired.

It’s been 8 days since I was admitted, two weeks since I’ve been home. I miss everyone terribly. I am trying my best to learn how to manage my migraine illness. My unique brain chemistry is a challenge to treat. I have the country’s best migraine specialists seeing me daily. There is hope.

This one time, in pain camp…

IMG_20150316_121423~2Here I am in my room at St. Joseph Mercy Chelsea Hospital writing letters home to my loved ones.

I have a spacious room, one once intended for two. It has a ton of space as a result. I have cozied it up with a sari quilt, a fuzzy leopard pillow, and a bouquet of peacock feathers from the feed supply in town. It will be my home for the next week or longer, so I wanted to make as home-like as possible.

Today I began the day with “rounds”. Unlike most hospitals, we go to our team in the lounge for rounds and meet with everyone at once. My team and I discussed treatment for the day and the week, and analyzed yesterday’s failures and successes. I was informed what doctors I would be meeting with, what medications I would be trying, etc.

As I walked back to my room Nurse Joan came and took me in to see the plastic surgeon. We discussed my last horrific experience with nerve blocks and he asked me to try again. So, I had occipital nerve blocks done. Six injections into the back of my skull, leaving me a numbskull. For the next six hours I track the result. So far, numb. Can’t quite tell if the headache is better or not. Can’t say the experience is pleasant. It is not, but it was not the horror show I experienced last time so whatever he did differently, I’ll take it.

Dad has been coming to see me every day. He sits in the comfy recliner by my side while I deal with treatments and headaches, reading a WWII book on his kindle. Sometimes he will tell me a bit about the book, a memory from my childhood, something about when he and mom met. It’s been a cozy time to get closer to him. I am beyond thankful for his presence.

I try to stay cheerful with silly touches like Ruby Slipper socks:

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And letters from loved ones. Thank you to all who have sent them, they help a lot.

Today is a high pain day, but I managed to make my bed, eat some breakfast, and blog. My next mission is to take a walk and then I will come back and try the next medication on the list of hopefuls.

 

Picture/Pictoria…

On the way to Michigan for “Pain Camp”…

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Electrocardiogram or fancy new fascinator?

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A non-victorious bathtub part at A Victory Inn in Ann Arbor…

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Resting in the new hotel, with hot water and everything…

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We are waiting for Sunday. The room did not open up in time for me to be admitted yesterday. So a few more days hanging out in Chelsea with my dad. He is being very patient and sweet, resting in the room with me when my head gets too bad, walking about with me when I feel too restless to stand it anymore.

I am so glad he is here.

Best photo of all: Hazel and Penny chill out at home on Oliver’s bed. Thanks to Dan for the snapshot from home.

Cats and Dogs, living together! Mass Hysteria!!
Cats and Dogs, living together! Mass Hysteria!!

—– Update —–

We went into Chelsea for a little walk about.

We stopped by the Jiffy Mix factory:

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We walked up and down the clocktower shopping area:

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And we read up on the history of Chelsea’s village square:

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