2190 Days of Headache; 2201 Days of Sweetness

Six years ago today, my life changed. My life had also changed six years and eleven days ago.

As of today, I have had a constant headache for two-thousand one hundred and ninety days. Diagnosis of New Daily Persistent Headache means I can remember the date my headache started. I remember October 26, 2005. It also was the date of my first Migraine attack which turned into Chronic Migraine as I had a constant daily Migraine. As I described in a previous post, Scariest Migraine Attack Ever: What I Didn't Know, the mishandling of treatment and diagnosis of that first Migraine attack was a nail in my neurological coffin.

Yep, six years ago was a changing day in my life, but six years and eleven days ago was even better!

Saturday, October 15, 2005, George proposed and I said yes. It happened to be "Sweetest Day" a silly Hallmark holiday in this part of the country that I don't recognize or understand. But that day was pretty sweet!

Saturday morning, George picked me up at my apartment and we went to our favorite breakfast place for brunch. We must've been really glowing because the waitress commented on how obviously in love we were. Little did she know, we would remember what she said because it was ironic that it would be on the day George proposed.

I had helped George pick out my engagement ring a couple weeks before though I walked away when he paid for it so I would not know when it would be ready after it had been sized or when he'd propose. My engagement ring is a ring with three diamonds and detailing on the side that has special significance to us. "You, me and Jesus." When we're going through an exceptionally difficult time (which is often), George picks up my left hand, pointing to each diamond he says, "you, me and Jesus are going to get through this." Jesus being the one that is holding us together.

After brunch we went for a walk because it was a beautiful day with the leaves changing colors down a path that was special to us. We passed up the wooden bench under a willow tree where he'd first kissed me and where I had always thought he'd propose. But we kept walking and walking and the sidewalk was covered with goose droppings. George made a game out of it and we jumped around the goose poop laughing. And then we came to the end of the trail in a clearing where he stopped me with a squeeze of the hand and got down on one knee.

Remembering that moment, I can see in my mind how beautiful a day it was with blue skies and rustling trees of different shades, the sun was truly shining and I remember him picking me up and spinning me around in happiness. Of course we had to come back through the goose poop as it was the only way. We danced through it, back to my apartment where we told Knightley and called my parents and George's. My head was in the clouds and it stayed there for eleven days.

Engaged

 Then the goose poop hit the fan. But George did not leave. He could have. and I remember when I was trying on wedding dresses with my mom, she told the store attendant that "most men would've left." My mom and dad were by my side on the two hospital stays before our wedding in July of 2006 and she saw George lovingly care for and tend to me.

We have had to walk through a lot of goose poop together, and even though today makes me remember the day all this started, I am choosing to focus on and be thankful for the fact that George has been by my side the whole time.

Sanctuary

Most of you know that I'm home bound. I have driven a car three times this year. I have been home bound so long that I have gotten way past what people call "cabin fever."  My house is now my sanctuary. Not as in Merriam-Webster's first definition of sanctuary: "a consecrated place" but more like the second definition: "a place of refuge and protection."  My house and backyard are a refuge from my diseases.

It seems strange that the place I am essentially bound to because of disease would also be a place where I find refuge. It has not always been this way. I used to think there might as well be bars on the windows and doors as this house has at times felt like a jail. But, over the years I have learned that I have to work at finding a way to live with joy. And changing my home into a sanctuary has been part of that work.

A wood framed rocking chair with vinyl cushions covered with cloth used to belong to my paternal grandparents and now sits in the room that was going to be a nursery but now is referred to as the "sitting room". Surprisingly, the cushions are comfortable, the rocking is comforting and there are enough dog beds to go around for the dogs that do not fit on my lap.

George, myself and our three dogs live in a bi-level home, but when my Migraine is severe or I'm having a Meniere's attack, it is impossible for me to make it safely down the stairs. Last November, we completely remodeled our lower-level living area because we were in the process of starting a family through adoption. It was not until this June that the beautiful space stopped being a storage area and became another calming living area.


We even bought a Beta fish at the recommendation of my counselor/therapist and I must say that watching "little blue" swim around his tank is soothing to the soul.

We have two blue Adirondack chairs on our deck to remind me of our time at the beach house in the Outer Banks. We also have a shaded cushioned bench swing in our yard.

Last night George and I discussed rearranging furniture upstairs so I could have yet another upstairs place that is not facing a television to be, to cuddle with the dogs, to read and to write.

This is my sanctuary. Except my bedroom.

Last week, I was bed bound. Being bed bound is the worst. When I am bed bound, my Migraine is so severe that I cannot get vertical (i.e. sit up in bed) without feeling a trillion times worse. If I could get vertical, I'd be out on the couch because I hate my bedroom with a passion. Walking the ten feet from the bed to the bathroom is a form of torture.  My bedroom becomes a jail cell of sky blue walls and dark navy black-out curtains and an item not included in most cells, a brain-sucker: a Samsung flatscreen television, which with the exception of a couple shows is a necessary evil.

I have spent so much time in my bedroom over the last six years that it has become traumatizing for me to be in it. After periods of being bed bound, I often sleep on the couch in the living room. As each day of the last six years has ticked by, my hatred of the bedroom has grown so that if I do not have a set evening routine, I get a full-blown anxiety attack in my attempts to simply walk down the hallway and go to bed.

Over the course of time, in brainstorming ways to change-up the look of our bedroom, George and I have re-arranged furniture, bought a bigger bed, changed the pictures on the walls, changed the color of the black-out curtains, and switched sides of the bed that we sleep on. After five and a half years of blue sky walls, I would love to feel well enough to paint them a new color.

My six year anniversary of chronic Migraine disease and constant headache (New Daily Persistant Headache) is tomorrow and most of those six years were spent watching mindless tv because I could do nothing else. When I could knit, I did. When I can write, I do. When I can photograph, I try. When I can read, I will. But, when I am bed bound I usually cannot do any of these. I desperately hope the hours will pass quickly with each tv show I watch. I am an early riser these days, and the middle of last week I broke down into tears when the clock read  "9:07am" because I had thought it was closer to 11:00am. Time stretches during Migraine attacks and for this reason, I try to avoid looking at the clock.

I have not yet gotten to finding sanctuary in my bedroom, and never may. So far, the only sanctuary I have found in my bedroom is within myself. I have found refuge in my inner sanctuary where I am with God and he is with me.

very few words

there really are very few words to say when it is this bad: when the Migraine lasting for days and days is constantly the most severe it could be on a pain and disability scale and there is no relief to be had or in sight.

The Force (of gravity) Was Strong With Me

Yesterday, Sunday, I went on my first non-medical related outing since we got home from our vacation last month. Our outing, our couples small group, was wonderful even though I stayed too long: longer than my body said I should. My head pain was incredible, but it was SO worth it as I will discuss in another post. 

By the time we had gotten home, which took all of two minutes, I was ready to lay on the couch and calm my body down. As George guided me up the stairs of our bi-level home, I was not experiencing vertigo. I was strong enough to walk by myself and hold myself up, but needed his arm for reassurance.

Photo from 2009 remodel

We walked into the bathroom and as I started to sit on the toilet (yes TMI, but it is part of the story!), I somehow slipped (our toilet seat had a wardrobe malfunction) and the momentum I had landed me face first in the bathtub that is parallel to the commode and only inches apart. I instinctively put my arms out to brace my fall. And with the way I had fallen, I had pulled the shower curtain, heavy metal hooks and rod down on top of me. The force of the falling rod hit the back of my head straight on. Yes, gravity pulled that silver bar in just the right direction: down.

George watched it all but too far away to do anything. His Jedi skills had abandoned him at the moment. (We will not tell Master Yoda about this.) These days he has a tight grip on me when I'm feeling off kilter because I have slipped out of his hands and hit my head on the floor a few times from Meniere's attacks or simply passing out. Actually, more than once a week, I pass out or have a drop attack. After so many falls, we have come up with a system of prevention. Though, we had not yet discussed what to do in case the toilet seat decides it wants to come off the base while I try to sit on it. Go figure.

It happened so quickly that I do not remember falling. I only remember being face down in the tub underneath a pile of curtains and a rod that had used the temporal and occipital part of my skull for target practice. I cried as I was stunned: first that I had fallen and second that I had been hit in the back of my head.

In those few seconds I knew I had a choice. I already had quite intense head pain from our outing and a was Migraine brewing. Crying is a huge trigger for me for headaches and Migraines. I do not usually stifle crying, but this was a time when crying would not make me feel better physically or emotionally and it actually would make me feel worse.

I took several deep breaths trying to slow my breathing and stopped crying. I was stuck because my left arm from my shoulder to my elbow is useless as fibromyalgia is causing it to scream if I use it. So I hung over the side of the tub until George regained his Jedi powers and helped me to the bed. Once I was laying flat with an ice pack the back of my head, I looked up a him and started laughing. That kind of uncontrollable giggle you get when something really "tickles" you (as they say down in Kentucky).

I did not know why I was laughing other than it was my body's way of coping. I'm pretty darn worn out physically and emotionally right now. Other than asking George what had happened, the thing I kept saying (while laughing, mind you) was "Really!?" "Really?!" "I just got hit on the head by a shower curtain?! Couldn't it have hit *anything* else!?" It wasn't a sarcastic laugh, but a laugh from my gut. George was staring at me. Maybe he was using Jedi mind tricks to make me laugh instead of cry?  Hopefully he wasn't thinking "my wife has finally lost it!" :)

I told George "I feel like I've been beamed in the back of the head with a baseball bat. He picked up the shower rod and said, "You have."

I am thankful the fall was not worse. I am thankful George was nearby to help me and that this had not happened when I was alone. I am thankful I had the presence of mind not to get worked up.

And I really am thankful for those things, but I don't feel thankful. I feel like I want to punch something and simultaneously I want to sob until I feel better. 

And those things are options, but instead, I am putting one foot in front of the other, which is proverbial because I'm not actually able to get out of bed today. And I'm hoping somewhere a researcher who cares about Migraine disease is also putting one foot in front of the other and working on a brilliant something-or-other that will one day benefit myself and the millions of people like me.

"Look at the new thing I am going to do. It is already happening. Don't you see it? I will make a road in the desert and rivers in the dry land." Isaiah 43:19

Migraine Research Foundation

Click the above link to find out more about the MRF and what you can do to help.

We Few Are Fighters

I have so many things I want to write about, but I am blocked and not because I have "writer's block". I am blocked because I feel I need to be writing more positive posts. But I cannot.

An estimated 10% of the 32 million Americans that have Migraine disease suffer from Chronic Migraine.  Chronic Migraine basically boils down to that sufferers have fifteen or more Migraine days a month. I found this information in articles by Teri Robert: Chronic Migraine - The Basics and Rewrite Your Day for a Chance to Relive a Day Lost to Chronic Migraine.

I have seen a stat somewhere of the percent that I fit into. The tiny percent of those of us with intractable Migraine that is also refractory. The percent of us that no matter how many trials, how many medications, how many medication combinations, we do not respond to treatment. We have constant pain and daily Migraines. We rarely mention them until they are so severe we are at our breaking point.

In one of the support groups I am a part of, several of us are disabled by our Migraines. And by disabled, I mean absolutely laughable that you might suggest we could try to work. Disabled in that we would love to do things "average" people do like household chores, errands and sometimes drive a car.

We are a group where we have tried so many medications that we have run through the list. Some cannot take triptans, a group of medications that are designed to specifically abort the Migraine process. Those of us who can do not respond to them, or get marginal help. There are a variety of rescue medications used, and for the lucky ones, these medications mask the pain for a few hours. But, they don't take away the other symptoms of migraine. The ones that we can't really put into words. To George I call them my "neurological" symptoms...what makes Migraine different from my constant 24/7 headache.

We are a group individually grasping at straws, going from specialist to specialist as they throw up their hands saying "we don't know what to do." We are a group that cling tightly to each other and to our faith in God. We are a group that knows that there is not any more suggesting "Have you tried this?" The only thing we can do for each other is to support, encourage, pray, and love and the biggest one: understanding.

We are a group that often feels defeated. We want to have hope. We want to believe. We are strong and we are fighters, but when you are fighting a war and you lose most the battles coming home injured, you feel defeated.

But I look at this group of women and I think. Wow, they are the ones who are so strong.

Yesterday, I lost my temper.

"Why?" you ask.

"George bought the wrong chicken stock," I reply.

I can count on one hand the number of dishes I have made in the last six to eight months. So, when I cook, I cook so that I can freeze the dish and eat it later. Over the weekend, George went to the grocery store which I am not currently able to do and have not been able to do since late Autumn 2010-almost a year. As usual, I gave him a detailed typed list and always write next to questionable items "check ingredients' because I have many food sensitivities and triggers.

Yesterday, I was excited I felt well enough to cook and so I made a huge batch of white chicken chili. When I picked up the empty box of chicken stock to throw it in the recycling bin, out of curiosity, I read the label and found that it was not organic and had ingredients I could not eat, thus making my dish uneatable. Two hours of spoons down the drain making a meal I could not eat.

Should I have looked at the label *before* I added it to the dish? Of course.

Did I? No.

Why not? Because I trusted George. He has always call me from the store when there was anything questionable on a food label before he bought it. George knows how important it is that I don't eat these ingredients and is the one person aside from myself that I trust when it comes to my food.

Who's fault was it that I now could not eat the chili? Completely mine. But that did not stop me from losing my temper.

With steam pouring out of my ears, I dialed George's work number. I can see my gentle husband pick up the phone, not having a clue that a train of ruthless words and anger was about to hit him.

I am ashamed at how I acted, how I yelled, how I cried, how I said some nasty things that I wish I could take back.

It took thirty minutes after I had hung up the phone for me to cool down, be convicted of how wrong I was in how I had treated my loving George and to call to apologize.

After much thought, I realized that the anger I had was not because George bought the wrong chicken stock. The anger I unleashed was anger surrounding emotions that have a hold of me. This little event triggered how upset I feel about my situation of being disabled, debilitated and needing to rely so heavily on others. It is difficult it is to face the reality that I am so reliant on George for so many things...help to the bathroom, support in the shower, walking back to bed, pulling me up off the floor when I have a Meniere's drop attack (which is frequent these days), shopping for groceries, doing household chores, driving me everywhere. The list is long. For a woman who by nature is independent and driven, a life of so much dependence and extreme limitations is a very cruel way to live.

My anger had nothing to do with chicken stock or George and everything to do with the disabling, debilitating nature of my chronic illnesses. And I'm sure as I was getting it all out, my anger about the daily severe pain I experience fueled the fire too.

I know I'm not alone in wrongly accosting someone with pain-driven anger because I have had others take out their anger on me. How often do we take our anger out on someone who did not deserve it? Someone who was just trying to help? Someone who loves us dearly? Someone who takes care of us when we cannot?

So many people bail when times get tough. Let's not hurt the ones that stick around.

Scariest Migraine Attack Ever: What I Didn't Know

The theme for this month's Headache and Migraine Carnival is "Scary Migraine Episodes: What is the scariest migraine attack you've ever suffered or witnessed?"

The scariest Migraine attack I've ever suffered was my very first severe Migraine attack. As you will read, it is not the scariest because it was the worst one I have had, but because at the time I did not know what was happening to me or what to do about it.

I have had headaches most of my life. I have vivid memories of taking much more Advil than any teen should take in one day. I had chronic sinusitis (sinus headaches) as a late teen and young adult. Then I started having a chronic daily headache that was triggered by the high levels of mold that were in my workplace.

October 26, 2005 was field trip day for the self-contained special education class I was working in.
I was working as a speech language pathologist in an early education center for children with varying levels of disability. I usually rode the bus with the class on field trips, but that day I opted to drive myself since I was not feeling well. As we wandered through the pumpkin farm's activity area, I was a bit disconnected and not present most of the morning. By the time the children were loading on the bus to go back to the school late morning, I was feeling so ill I knew I needed to get home-and fast.

I remember the drive as if it were yesterday. I was so dizzy that I was having trouble concentrating on the road and certainly not feeling myself. On the thirty minute trip to my apartment, I was so scared that I called George, who I was newly engaged to, but got his voice mail.

Climbing the stairs to my second floor apartment felt like I was climbing a mountain. I barely made it over the threshold of my doorway when I sank to the ground. I crawled to the nearby bathroom and after I vomited, I lay face down on the olive green pile rug. And then the pain came with such a punch of intensity that I thought I was dying.  I heard the phone ring, but I could not move. I couldn't make out the words, but I heard George's voice and remember thinking to myself that he was going to find me dead.

The next days and months were terrifying. I went to the immediate care center which led to the ER, which led to my PCP's office which led to being hospitalized for dehydration and severe headache (they were not calling it Migraine at the time), which led to a neurologist who did testing and gave me a diagnosis that was not Migraine. I was given so many meds that did not help and some that made us think I was going crazy-literarally. The anti-depressants I was put on for pain caused me to be suicidal. I was frequently attempting to jump over our house's balcony and saved only by George holding me down or friends he had called over to help him by sitting with us. One friend told me that at one point, I was referring to myself in the third person and talking as if I were satan saying I was going to kill "Kelly." It wasn't until I saw a psychiatrist that said "You are not crazy. It is the medication." I stopped the medication and the mental instability/suicidal issues stopped as well. Yes, I'd say that was traumatic and scary for all involved!

Looking back, what I have gone through in the years since then has been much worse and much more horrific. But this time in my life between October 2005 and February 2006 was scary because I did not know what was happening to me or what to do about it. I had no compass or reliable guidance. Everything I did led me navigating a path of confusion and pain.

After three months of seeing me, the neurologist I was seeing told George that he thought I was just depressed and it was all in my head. The nuerologist had me on Esgic Plus around the clock for months. I still have a script from him that says for quantity #100. What was he thinking? Of course any person with headache or Migraine tendencies would immediately be rebounding. And I was. I keep the script to remind me not to implicitly trust doctors, but to question and research and get multiple opinions. 

Eventually on February 8, 2006, I had to leave work mid-day after a parent meeting. I went to the emergency room and my neurologist prescribed a VERY strong narcotic. The time between February 8th and February 17th (when I saw a headache specialist for the first time and was admitted to a hospital inpatient headache unit) was the scariest for George and for me. I laid in bed every day in agony. We did not know what to do. Like a good patient, I took medication as prescribed and of course as it was a narcotic, the relief wore off. As I was unfamiliar with narcotics, I did not understand why and so I suffered tremendously.  After going to the ER multiple times and calling my neurologist multiple times, I was lost as to what to do.

Without sharing my opinion, I recently asked George what the scariest Migraine he's seen me go through was and he referred to that time in February 2006. Here is what he says about the time.

It was scary because it had been going so long and it had gotten so bad and we were at our wits end. Kelly was on percocet and trying so hard and I would come home from work and see this desperate constantly horrified look in her eyes because she was in constant pain. The ER couldn't do anything and neurologist didn't do anything and we didn't know what to do. It was horrible.

The doctors were not telling me what was wrong and the treatment I was given was not helping and probably making things worse. The neurologist never told me about Migraines. We certainly did not know about Migraine/headache specialists, Status Migraine or chronic daily headache or preventatives or abortives or rescue medications or rebound headache or IV treatment for Migraine and the list could go on and on!

It is hard to remember the mindset I had back then...to remember how it was and how scared we were because Migraine disease has since become a daily part of my life and I know so much about Migraine disease now. But remembering the terror we had keeps pushing me to keep reading, keep researching, keep questioning so that I keep myself educated and do not find myself in that situation again.

If you are looking for somewhere reliable to learn more about Migraine Disease, a couple of great places to start are Migraine.com and My Migraine Connection.