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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A Victory Inn is not victorious.

We got to our hotel near the headache clinic yesterday afternoon after a cheerful cab ride from a Michigan enthusiast and an incredibly painful flight. For me, everyone else seemed to think it was fine as they didn’t have an army of angry dwarves pounding into their cheekbone as the pressure changed.

We were delivered unto a very depressing looking hotel behind a depressing gas station with a sign that read “G oup ra e avl.”

Hmm.

Inside we were met by a brusque clerk who quickly gave us a room by the farthest back exit. Upon opening the door I discovered several things:

1. The wall paper and carpet were both peeling.

2. There were cigarette burns on the ceiling. Somehow.

3. All of the hotel hangers designed to be useless to steal because they disconnect from the hanging part when you remove them were stolen.

Then the clerk knocked on the door and told us the hot water was out but should be back tomorrow, OK?

Sigh.

We then discovered the wi-fi didn’t work.

Grr.

We went to dinner at Chili’s and were made better by a few of their lovely margaritas. Eventually we went back to the monstrosity to sleep. The next morning the clerk failed to call me for my requested wake up call, but luckily I had set my alarm so we made it to the clinic for my assessments.

They drew blood. I had an EEG, resulting in real globs of water soluble paste all over my head. I met with a doctor and a psychologist. I spent 9 hours being tested and questioned before being told I was being admitted to the hospital and to call after my MRI’s for admission instructions. Then we went back to the hotel, tired and hungry.

I turned the water on to take a shower. It was cold.

Grrrrrr.

I had huge globs of paste in my hair that had been there for 8 hours and it was really starting to hurt. I used a styrofoam cup to wash my hair out in the tub so I didn’t have to stand in the freezing cold water. As I did, the tub began to fill. I figured the stopper was set to on so I reached over to turn it to drain and the handle came off in my hand.

At this point, despite anger being a trigger for migraine, I was getting pretty angry.

I finished washing my hair and went to tell the clerk about the tub and complain about the water.
Me: The water is still cold.

Him: Yeah, it’ll be fixed tomorrow.
Me: I had to wash medical paste out of my hair with a cup on the edge of the tub and while I did, the bathtub handle came off in my hand.
Him: That’s okay, I’ll leave a note about that for maintenance.
Me: That’s okay?
Him: Yeah. Room 123 right?
Me: Deathglare.

Which is how we ended up in the Holiday Inn Express in Chelsea. It’s the most luxurious room I have ever stayed in. It is made of Unicorns farting rainbows made of smaller Unicorns.

Raise your glass to answers…

Or at least better questions.

We are off. We leave in two hours for beautiful Ann Arbor Michigan. I will be engaging intensive treatment with a team of specialists from all areas as we try to find a way to cope with my headaches and TN.

I will not come home with a cure, but with a new path. A new treatment. It’s enough.

It has to be.

Ann Arbor on the horizon…

It’s 5:30 a.m. the morning after Spring Forward.

I can’t sleep.

Tomorrow morning I take my fuzzy pillow and my comfort quilt and I board a plane for the Michigan Headache and Neurological Institute in Ann Arbor.

I don’t know how long I will be there, if they can do anything, what the prognosis is.

All the anxiety I have been staving off with everything I could possibly find just hit me right now, in the 5:30 am quiet of the house.

I somehow can’t believe my headaches have gotten so bad I am going into a special hospital for them, but here I am.

If you have spare prayers, please throw a little my way. I am casting about in a tiny boat on a huge angry ocean. This is the last big try, if it doesn’t work, there isn’t any other plan.

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