Saturday, December 8, 2012

Therapeutic Companions

As an adult, I have had three dogs. Aside from my husband, they are the loves of my life and though it may be hard to understand for some, I love them like they are my kids. All three have unique dog personalities and have helped me cope with my disabling Migraine and constant headache in their own ways.
Mr. Knightley...ah, my Mister Knightley or simply Knightley for short was what Emma called the man she fell in love with in Jane Austen's novel Emma. I was given my Mr. Knightley, a ten week old Blehneim Cavalier King Charles Spaniel by my parents as a present for my graduation from graduate school when I was twenty-three years old on May 25, 2003. It was ironic that in Emma, Mr. Knightley's first name is George...the same name as my husband who I did not meet until a year and a half later. I was told that male Cavaliers fall in love with their owners and my Knightley lived up to that and then some. I always told Knightley that he was born out of the womb of my heart.

Zoe (pronounced "Zoey") means life. I was not particularly fond of her given name, but when we met her, "Lily" did not match her tomboy-ish attitude. She is intelligent and with her tail wagging, she thinks every person in her view is coming to meet her. She is the youngest and about to turn five years old in January. Zoe is a Black and Tan Cavalier King Charles Spaniel. On August 4, 2009, we got her from a rescue organization specifically for the breed called Cavalier Rescue USA. (You can see her photo on the website's homepage along with some of my family's other Cavaliers: #4) She was 18 months old. Her prior owners could not afford to care for her after losing their job, and we were so happy to add her to our family.

Giselle was renamed after we adopted her because we felt she deserved a new name to go with her new life. She had had a rough start to life and has an anxiety disorder unofficially referred to as "fly-biting". We named her after a character in one of our favorite Disney movies Enchanted but the only thing she has in common with the Disney character is that they both have red hair as Giselle is a Ruby Cavalier King Charles Spaniel. We got her from Cavalier Rescue USA as well. She had just turned four years old and had been living with her wonderful foster mommy Julie and three cavaliers for a couple months when we adopted her on May 21, 2011. Since she has been with us, she's grown her coat, gained weight and her anxiety disorder has improved though it is still very much present. I am starting to see her become more like a happy healthy dog every day instead of the traumatized little one we adopted.

Recovering from Endolymphatic Sac Decompression Surgery
How the dogs help me cope with my chronic illnesses is largely by being my companions. They help me feel less alone, which is the most important thing for someone who is home bound. Pain can often make one lose perspective, but having my dogs around helps to keep me grounded. They also make me laugh with their silly antics

I love my girls, Zoe and Giselle. They motivate me to get moving and take walks with them when I can. They cuddle when they want to. Zoe is a pro at helping me through anxiety and panic attacks as she is very perceptive. If I'm laying down crying, she will nudge her muzzle under my chin and lift it up. She also gives "hugs". For a dog who likes her space, she is quite attentive when she picks up something is wrong. 
Cuddling during a bad Migraine attack.
 There is a huge hole that was left when my Mr. Knightley died suddenly at 9 years old from Immune Mediated Hemolytic Anemia (IMHA) on June 8, 2012. He had shared this journey with me from the start of my disabling Migraines and Headaches for four years before we adopted Zoe. Knightley was my caregiver when George was at work, and he knew it. Please read more on how my Mr. Knightley made it onto CNN Health online and how he helped me through Migraine disease by checking out Sharing My Heart & Hope With the World via CNN.
My boy taking care me during a Migraine on vacation. May 2011

Tuesday, December 4, 2012

Sincerely Sick Style

One of my fellow Migrainuers, Kelly, recently started a blog called Sincerely Sick Style that I am so excited about and thrilled to share with my readers. Her tag line reads:
A place for the sincerely and seriously sick to learn to fake looking well and how to take care of their skin, hair, nails, makeup, etc with the least amount of effort possible.
Sincerely Sick Style is a unique blog that fills a need for those of us who are chronically ill: how do we look good while feeling terrible with minimal effort? 

Throughout the four years I have known Kelly, I have witnessed our chronically ill buddies repeatedly go to her for beauty tips and product suggestions. Kelly has a treasure trove of invaluable tips and suggestions gleaned from her life experience as a chronically ill person. 

In her most recent post, Winter Skin Fixes, I was happy to find out that the fact many of us chronic Migrainuers do not shower very often actually can be beneficial for our skin in the winter because we aren't removing our skin's natural oils. I bet with this knowledge, my non-chronically ill readers are now jealous of our community's dirty little secret of lack of showering, even though you may be cringing!

Sincerely Sick Style is easy to read and filled with links to products and contains useful information regardless of your illness status. I particularly appreciate that products that are also in a reasonable price range are recommended.

Check out Sincerely Sick Style which Kelly describes to be "a lifestyle blog about looking fabulous while feeling awful all of the time. My primary audience is people who suffer from chronic illness and therefore don't have a lot of time or energy to take care of their looks.  But anyone can benefit from my advice on skin, hair, makeup and nails."

Sunday, October 21, 2012

Trauma 22 Years Apart: My Brother & My Husband

*Warning: This post contains content and photos that may be uncomfortable for some readers.*

This post is quite long and is unlike a typical post I would write as it describes two traumatic and miraculous events that I witnessed of two beloved people in my life: my brother and my husband. Twenty-two years apart, I found my brother (1990) and my husband (2012) unconscious and seizing.  I have an extremely visual memory, so everything I am sharing is like a video recording being played back in my mind. I have had flashbacks where I have relived some of these events, both with my brother and with my husband. Because I have a better recollection of what happened with my husband, there is more detail. I need to write this out as a therapeutic outlet and my blog happens to be where I have decided to share it. There are many people who experienced these events I am sharing and each has a different perspective and may remember more or less details than I do.
However, this is my story:
***
At ten years old, I was a light sleeper. My brother, who was seven and a half years old would sometimes wake very early in the morning by playing or singing in his bedroom. One particular morning around 3 or 4 am, I woke up to what sounded like my brother singing in his bedroom again. We had out of town company and the guest room was between our second floor bedrooms. So, I ran to his room and yelled into the darkness using my best quiet voice, "BE QUIET!"

After returning to my bed, I realized my brother had not silenced. So, I turned around and went into his room upset he wasn't listening to me. The strong odor of urine hit me. Funny how I still remember it... His sheets were tussled. In the dark, my brother was writhing around on the floor of his bedroom moaning...not singing.  I don't remember how long or if I tried to get him to respond, but not understanding that my brother was unconscious and seizing, I ran down the stairs to my parents' first floor bedroom and woke up my mom; my dad had just left to go out of town on a business trip.

My mom carried my brother downstairs to try to wake him. I have a faint memory of sitting on the stairs watching through the vertical railing of the banister as the paramedics went into my parents' room. However, I very clearly remember later looking through my bedroom window blinds watching them put my brother into the ambulance and seeing it drive away--thinking it was odd that they were not using the sirens and only the lights. That moment is etched into my psyche. Silent ambulance in the dark of the morning driving away with my brother; inside I was quietly crying for the sirens that weren't. 

After the local ER, my brother was transferred to the Pediatric Intensive Care Unit (PICU) at Texas Children's Hospital in Houston, Texas, where we lived at the time. He was in a coma and still seizing. Something was happening to his brain but the doctors did not know what it was.  Later, probably when I was older, I was told more about his seizing and that his EEG (test for brain waves) was "extremely abnormal"; how he had to be restrained; how they said it had been likely he would not wake up; how they said if he did wake up he could be mentally disabled; how they said because of the severity of his condition he might not survive.

I remember staying home from school and watching "People's Court" with my mom's older sister who was our out of town company. I have a very strong visual memory of being with my cousin in my bedroom and telling her to appreciate her brother. I remember when I returned to school, teachers would whisper around me and it felt like I was being treated differently. I remember it feeling like things were changing but I didn't know how to process it.
Myself (10 years old) and my brother (7 1/2 years old) @Grand Teton National Park

***
On Sunday morning, September 23rd, 2012, which still feels like yesterday, I was sleeping in a different room from George and woke up at 3:30am to what I thought was snoring, so I assumed he was sleeping. Around 7:45am, I went in to wake George who was laying on his back. Giselle (our ten pound Cavalier) climbed on top of him, sniffing him intensely and I was hoping she wouldn't wake him up because my intention was to snuggle up next to him.

As I got closer, I realized that the "snore" was not a snore, it was some weird noise that I cannot describe nor imitate. I sensed something was very wrong. I started calling his name and shaking him. George was hot, so I stripped the blankets and bed sheets off of him and everything was soaked. He sounded like he was aspirating (fluid going into the airway) with this "snore," so the Speech Language Pathologist (SLP) in me rolled him on his side to open his airway and his face flopped to the pillow, so I immediately had to roll him back. Then George started seizing: eyes rolled back, odd moaning, muscle spasming. But, was not what I would expect from a seizure which is why I think I was a bit dumb-founded at first. He almost looked like he was trying to sit up with his arms outstretched which was something he would repeat with other seizures.

At one point, before I realized he was seizing, I was trying to get him to follow simple commands (again the SLP in me) which he wasn't, and the whole time, I was screaming, "I'm gonna call 911, George!" hoping to rouse him.

The 911 operator asked me if I had a defibrillator which scared the crap out of me. I've taken CPR so I know you use a defibrillator to reset the heart rhythm and of course we don't have one. She wanted me to put him on the ground but there was no way I could do that. And within what felt like seconds, the parameds were walking in our bedroom. I watched five men descend on and eventually stand on our king sized bed over George and was asked several questions. Then I was led out of the bedroom by a policewoman as they were cutting off George's gray long sleeved t-shirt.

I wanted to fight her to get back to George as I didn't want to leave him alone even though I knew the paramedics had to do what they had to do. My brain was scrambled eggs as she asked me even more questions in the entryway to our kitchen. She told me to call a friend to drive me to the hospital and I did.

Note to anyone who sees an ambulance/fire truck/squad car parked at someone's house: do not approach as if it is a show to be watched as it could be someone's nightmare unfolding. And by all means do NOT bring your three year old grandchildren over because "they like fire trucks."

Aside from initially finding George, which was terrifying, what is etched in my memory was seeing George being carried down the front cement steps to the ambulance and feeling the ache that I didn't get to kiss his forehead or touch his shoulder before he was taken. Still disoriented, my dear friend and the policewoman helped me get myself together, clothes & shoes on, dogs in their crate, a bag of Kelly-friendly food, phone & charger and the house locked.

I called George's parents' and mine, who all live out of town, on the ride to the hospital and somehow expected that when my friend and I arrived at the hospital George would be awake. But when we arrived, they didn't bring us back to George; they didn't have us sit in the waiting room; they brought us to the "Quiet Room," a room with two yellow couches that looked all too much like the room where a vet came in to tell us Knightley had died. We were told the doctor would be in to talk with us. My friend kept my head glued on (she must have had some pretty powerful super-glue) and kept me in the moment.
"Go with the strength you have, " the Lord said to Gideon. "I will be with you.' - Judges 6:14&16
The doctor came in, told me George had been intubated and was on a ventilator that was breathing for him and that he was getting tests to rule out things like stroke, brain tumor ect. He said they would bring us back to George when he was in his ER room. The wait felt like an eternity.  Finally, we were led back to George, though we still knew nothing about his condition. And there he was, laying on the gurney with a vent breathing for him.
My friend, who wasn't feeling so hot herself, took phenomenal care of me so I could care for George. God had certainly intervened so that she could be by my side and I am SO thankful that I had her as my advocate. When I would forget what the doctors had told me, she would remind me so I could relay it to family. She kept telling me to eat/drink/sit and even got one of those pink recliner chairs for me because my body was crashing. Having medical power of attorney, I was giving my consent for things like a lumbar puncture and an MRI--they even called me in the middle of the night when he was in the Intensive Care Unit (ICU) so that he could have a central line placed in his neck.
Do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." -Isaiah 41:10
Unresponsive, on the ventilator in the ER Sunday morning.
It was a good and a terrible thing that I have a medical background as a Speech Language Pathologist but also as a health advocate. I knew enough to know and be thankful for the good news that was coming in but I also knew how bad it was. George failed one of the eye neurological tests and because of his state: unresponsive to stimuli they scheduled an MRI to look for a deep brain stem stroke. Short explanation: deep brain stem is the central processing center for your brain- if it doesn't work-nothing else does.

So, they took him to MRI and I was hoping to catch a nap while he was there, but then my heart fell to the floor when I heard the intercom emergency alert that goes through the whole hospital repeat three times: "Emergency Response Team to MRI" I thought he was dying and we had no way of knowing what had happened.  I completely melted-down but my friend held me up. We found out after a long wait that George had started seizing again when they moved him to the MRI. I didn't get the nap. Spoons were in the high negative numbers at that point.
He gives power to the weak, And to those who have no might He increases strength. -Isaiah 40:29
My uncle (dad's brother) surprised me by showing up in the ER and relieved my dear friend who had been with me (and George) for eight plus hours. George and my uncle get along famously.  In April, my uncle had ended up in the hospital himself as the result of a traumatic emergency situation and George left work so that he could be with my uncle before his emergency surgery and continued to visit him after that.

Getting EEG in ER
I hated the ER. I felt like I was the only one that was watching over George, which my mom said she also felt when my brother was in the ER. One time when I was alone, George was both seizing and vomiting at the same time with the vent in his throat and I was screaming out the door for anyone to come help. After his MRI, an EEG was performed and he did not seize during the test at all (probably because he had been given an IV push of an anti-seizure med) until she took the leads off his head and he started seizing again. He spiked a fever from 97.9 at arrival in the ER to 102.6 and rising. An X-ray had determined when he arrived that George had some pneumonia. But after the temperature spike we had to take sepsis droplet precautions (i.e. masks) and as I had been touching him and talking in his ear and singing to him, I wasn't allowed to get too close anymore. The sepsis concern was scary as George already has a weakened immune system from the immuno-suppressant IV infusion he gets every eight weeks for his Crohn's disease.  
Sepsis precautions in ER.

George's parents who live 8 hours away were en route by vehicle. My dad, had been on a flight to a business conference on the other side of the country (eerily like my brother's situation) when he heard about George, he turned right around and flew directly to Chicago and my mom flew in as well.
ER RN, transporter & Respiratory Therapist
transporting George to ICU.

I had been told from almost the moment I was escorted into the ER that morning that George would be going to the Intensive Care Unit (ICU) but it took all day because they had to complete testing and get the results before he was transferred. He was brought to the ICU twelve hours after he arrived. Shortly after, his parents arrived as did another wonderful friend who had made me a Kelly-friendly supper for which I was so thankful! Finally, after an hour and a half of waiting in the ICU waiting room, we were allowed into the ICU to see George.

The hardest decision I ever made was to come home to sleep that first night. George's blood pressure and heart rate were bottoming out and he had to be given norepinephrine. I did not want to leave him, but I knew my body was going to give out if I did not go home and sleep in my own bed. I had a special number I could call to find out how he was doing and the nurse had my number to let me know of changes. I got calls from ICU nurses a few times that first night. And because only one person could stay the night with him, my choice to come home allowing his mother to be with her son.
ICU on Monday. A green bite block is in his mouth because he almost bit through the vent tube. He also had a 103 fever here.
Gray wrist restraints kept George safe.
Monday, George's parents, my parents and myself stood, sat, rotated chairs, held George's hands talked to him and occasionally to each other as we watched as George's rigid body fought hour after hour. Thank goodness for the restraints on his hands. George is so strong and his body was physically fighting so hard. He was spiking a fever again that got to 103.  He was still unconscious and unresponsive to any commands though he would jerk to loud noises and would grimace when they suctioned him. He was also beginning to breathe over the vent, though it was still erratic and unstable. These were huge improvements from the day before. Though in the photo above, George looks calm, he looked that way probably 5-10% of the time. His body was fighting and flexing the rest of the time. It was almost as if he was trying to get out of bed. The nurses had to reposition him countless times. All Monday, he was still in a coma.  Coma: the word I had only ever connected to my brother. The first time someone spoke it in the ER in reference to George was when the denial faded away and I knew it was bad.

***
My dad took the night shift with my brother and my mother took the day shift. My brother had been in a coma for a few days and after one particularly dreadful night, my dad called my mom to prepare her. He told her that my brother had had his worst night ever with severe, continuous seizures that were not being controlled by medications. So, my mom who at the time was only two years older than I am right now, put on mascara so she wouldn't cry. She hoped for the best though inside prepared for the worst. In my mom's own words from a talk she gave a several years ago,
I reached down for God given courage as I walked into the intensive care unit. I tentatively approached his bed, really expecting the worst. As I came closer, (my son) turned his head around with open eyes and said, "Hi Mom!!" I am unable to express the depth of joy that I felt! It was a miracle, nothing less. Not only was he awake, but he knew by name, "Mom."
I remember something feeling very tight in the pit of my stomach from the moment my brother was taken away in the ambulance and I am not sure when it went away.  I have been a sensitive (meaning intuitive/observant/emotionally in-touch) person my whole life and I think back to my ten year old self and wonder how she processed everything as it was happening. I remember standing in our kitchen and talking to my brother on the phone one time when he was still in the hospital. I had been told he had asked, "Is Kelly in the game room?" The game room was an upstairs room where we played together, watched television together, danced to music together and built forts together.  I remember the flood of love from the community: the long roll of butcher paper signed by his whole elementary school: teachers and students; the stuffed toy gorilla holding a banana and a "Get Well" balloon tied to it. I remember building Lego buildings with my brother and not understanding when he acted out. I remember going upstairs when the home-health nurses came to give him IV infusions. To this day, my brother hates needles and I don't blame him with all the poking and prodding he had as young boy. I remember the tutor that came to our house to work with him because he had missed so much of the second grade. I remember feeling inside that things had changed.

It was not until later that my parents (who were not church-going people) discovered how many people had been praying for our family and specifically my brother: my dad's boss's wife and her prayer partner, my brother's school principal, his teacher, people who had my brother's name on their prayer lists of their churches, neighbors, family, old friends of my mom who had gone to a Christian group called "Young Life" together as teenagers, and people my parents did not even know. People were praying for my brother all over the United States.

My brother is now 30 years old, is married to the sweetest woman, and is doing a  job he dreamed of doing ever since he was young. He has not had seizures since his episode/coma when he was seven and the cause remains a mystery. But, what my family witnessed was a miracle and it changed all our lives forever. My brother is here for a reason.

***
From the end of the earth I will cry to You, when my heart is overwhelmed; Lead me to the rock that is higher than I. -Psalm 61:2
Each time I walked through the locked doors into the ICU, I would take a big breath, ask God for strength and try leave all of the emotional weariness, crying spells and any sign of being overwhelmed at the door and brought my advocate stoic self. I questioned everything anyone did to George and asked for an explanation for everything. On one occasion, the neurologist told me he had switched George's IV anti-seizure medication and when I asked which one it was, the neurologist acted surprised and questioned me as to why I wanted to know! I guess other people do not ask, but my husband could not advocate for himself, so I sure as heck was gonna know everything they did to and put into his body.

The first hope we had was on Monday after they had changed some of George's medications that had been keeping the seizures at bay, but also had been sedating. On Sunday, even without the medications he was completely unresponsive. So when, the ICU nurse told me that with this medication change, he might rouse a little, I did not let myself hope. I did not want to jump on that roller coaster. A few hours later, a woman came from my church and the six of us (both sets of parents, myself and the lady) prayed over George all touching a part of his body; she anointed George with oil on his forehead (something done in the New Testament for those who are sick), and we sang "Amazing Grace" in our joyful noise chorus with tears.

Almost as soon as the woman from our church left the room, we noticed George's eyes flickering: not in a seizure way, but not necessarily like he was waking up. However, this change filled us with such positive excitement. The nurse came in with an assistant to reposition George in bed, something that had to be done numerous times because of how much his body had been struggling and moving around. We knew the drill and all stood back to let them do their job. George's mom was behind me with her arms wrapped around my shoulders. The ICU nurse noticed the eye flickering and we watched George respond meaningfully for the first time since he had been in the coma. He responded to three individual simple commands ("squeeze my hand," "wiggle your toes," "open your eyes"). My mom said she could not see it because the nurse blocked her view but she could see the reaction of myself and of his mom and has said that it is something she will never forget. I didn't expect George to respond, and when he squeezed the nurse's hand on command, when he wiggled his toes and he tried to open his eyes, which was very little, but an attempt, I sobbed with joy and held tightly to George's mom's arms as we rocked back and forth. Though the rest of the day, he was not responsive, George did this once more that night including turning his head to the sound of my voice. Despite having the nephrologist express concern that George had lost 55% of his kidney function since he had arrived, we were so happy.

Being trained as a Speech Language Pathologist, going through internships and actually having patients pass away suddenly and unexpectedly, I know that in these situations it can be one step forward, two steps back. So, though I was full of joy (and exhaustion), I was very tentative when I left the ICU for home that night. I did not sleep at night--I was alone in the house for a few nights--and it was probably good because I've never screamed out to Jesus louder or cried harder. Zoe, our black and tan Cavalier, pushed her body into mine trying desperately to comfort me.
My soul is crushed with grief to the point of death. stay here and keep watch with me. -Matthew 26:38
Each morning I was terrified to call the ICU nurse--fearing worse news. That Tuesday morning I did not go to the ICU at the crack of dawn because my body was wearing out on me--I was having difficulty walking-fibromyalgia, was weak from no sleep and keeping vigil over George and I was in a lot of head pain--chronic illness really stinks in these situations. I had told my parents I would call them when I was ready for them to pick me up; they'd planned on arriving early at the hospital with George's parents who had been staying the night with George. I was so weary and terrified of hearing bad news alone that I did not have it in me to do a phone check in with the ICU nurse that morning. So at about nine in the morning, I called my mom and it went to voicemail; I called George's dad and it went to voicemail. With no one answering their phones which was an odd occurrence, my fear took over:  George had probably died and in my brain I figured my parents were not picking up the phone because they didn't want me to be on my own when I found out the news.

By the time I called my dad, I was panicking. He picked up and my heart stopped as I asked about George. My dad said, "Kelly, he is awake! And he is using sign language." And Dad wasn't able to get out any more because my sobs of relief and joy were too great and I told him to come right away to pick me up. I have used sign language with George during my Migraines because noise of talking would be too painful and though George consistently had trouble remembering all of the alphabet letters and other hand signs I'd teach him, he still would try. It was the same feeling my mom had when my brother called her "Mom", I knew in that moment, my George was coming back.

George had the ventilator down his throat still, so he couldn't talk and he was too uncoordinated to write so he was signing using the sign language alphabet. But, no one knew sign language (as I was still at home), so my dad pulled up a chart from the internet on his iPad and figured out George was spelling "c-o-l-d". As George had such difficulty picking up and remembering the sign language alphabet,  I had just had him practice signing it himself the week before. Knowing he was using a method of communication so difficult for him warmed every part of my being. I got down flat on the floor and thanked God that George was awake. 

On the ride to the hospital, I kept asking my parents, "He really has his eyes open?" "He was really signing?" Given his condition, I had been trying prepare myself for his possible death or severe mental impairment as we had almost lost him and his condition was so critical.  In the time it took my parents to retrieve me to the hospital, they had determined through tests that it was safe to remove and had removed George's ventilator and though he was still fragile with low oxygen saturation levels, he was breathing on his own. It was the first time I walked into the ICU with excitement to tell George had have him hear the words I had been terrified I would never have a chance to say again, "I love you."

He was sleeping and the room was dark as to keep him calm and quiet as he was still fragile. And the moment he saw me, his mom said his whole being lit up. I gave him a huge smile. His voice was quite hoarse from the vent and so not many people could understand him. But I could and the first thing he said to me was "I have to pee!" Hehe! He was still a bit out of it from the medications and didn't understand certain things (like he did not need to get up to urinate). But right away he was trying to hug me, he signed "I love you" and he started saying "I love you" and he was hoarsely trying to sing "our song" which melted my heart. He knew me. He loved me. That was all that mattered.

At one point, he called me "mein Liebschen" which means "my sweetheart" in German and something he says to me multiple times a day. I could not believe my ears. I did not expect him to make such a miraculous turn around. To go from squeezing a hand, to putting sentences together! He even told myself and his ICU nurse that: "I know my surroundings." I have to laugh at how funny it sounds now, but his brain was trying desperately to let us know he was okay.

George was still pretty out of it, being medicated and still recovering, so we were trying to let him rest, but he noticed my dad across the room for the first time and hoarsly said, "Ron!" And with tears running down my face, I took this photo as my dad briefly talked with George. Later George also called my mom "Donna" without prompting. He also called his parents "Mom" and "Dad" and later when asked by a medical professional who I was, he answered "my beautiful wife, Kelly."
I will praise you, Lord, with all my heart. I will tell all the miracles you have done. -Psalm 9:1
 
George held my left hand and looked at my rings. We chose our engagement ring that has three stones as it has meaning to us: center stone larger representing God/Jesus and the stones on each side representing us. The ring visually symbolizes that God is holding us together. As he looked at my ring, George said "You, me and Jesus" which is what we always say. 'You, me and Jesus' is how we approach every challenge we are given and a comfort to know that we are not alone. I was constantly amazed by everything George was saying and the SLP part of me couldn't help but evaluate his cognitive skills as "swell" considering. He was having memory problems related to the medications, but by golly, I knew he was going to regain function! 

If you look at the above photo closely, you can see George has the nurse "call" button in his hand which also controls the television. He was randomly changing channels and not really watching it. When it was my turn to rotate out of the room as the ICU team deemed him too fragile (blood pressure and heart rate dangerously high) to have more than one of us in there at a time, I looked up at the muted television which I had had my back to.  I said, "George, you are watching, "Say Yes to The Dress" (a bridal show). Do you want to watch this?" Even though he was still not completely with it, his wit came through and he said,  "I say no to the dress!" And I laughed, for the first time in what felt like eons. The next day, as a dutiful Star Wars geek wife, I brought in the original Star Wars Trilogy (IV-VI), which I knew he would enjoy MUCH better.

I happened to be out of the room for the bedside swallow test (a test to check if the patient is safe to eat/drink without it going down the breathing pipe and into the lungs.) This test (something I used to do) was performed by the hospital's Speech Language Pathologist (who later offered to get me a job if I ever wanted/needed one). I happened to be out of the room for the initial swallow test and when I came in, George's dad got very emotional and with tears of joy said, "George can have chocolate ice cream!"

Every step was beautiful. George was quite compromised still and uncoordinated. I fed him his first meal, with my SLP self coming through: encouraging small sips, small bites, and having him vocalizing every now and then so I could hear that the food/liquid wasn't going down the wrong pipe. It made me smile to see him to work quite hard to reach over every other container to get to the chocolate pudding.

George made good progress and was discharged after ten days. Every day brought something new and everyday was a miracle. He is now back at work (his new job that he had only worked at for two days before this happened). I knew how many people had been praying for George, his family, myself and my parents. Facebook allowed for word to get out quickly and for prayer and support to come in from all corners of the U.S. but also from a friend and her family and family's church in New Zealand. I am/was simply overwhelmed at the number of people showing an outpouring of love for my husband and myself. Our veterinarian somehow found out through Facebook because I 'Like' the Animal Care Clinic's FB page and she personally called me expressing her concern. My brain was scrambled eggs on day one hour one, and each minute that passed, my brain worked slower and became more overwhelmed. It is so hard to relay such an experience to anyone who has not lived through it and hoping that people would extend grace. I told a friend I was forgetting to eat/drink because I was constantly nauseous and she immediately set up a group of people (three of which I did not know!) to text me daily 9a-9p (every two hours) to remind me to eat and drink. I could barely put thoughts together and was so thankful that one friend was able to take my broken communication and share it with the Facebook world by tagging me so that all my friends could get the update on George.  Later I was told that friends would pray together over the phone and over FaceTime for George. George was on church lists and email update lists. A couple of dear friends of my mother's devotedly frequented their church to pray and lit candles for George, myself and both sets of parents. My mom showed me the above photo texted to her by her friends when we were in George's ICU room, and I was overcome. Thank you.

It is a miracle. I will always remember and be thankful for God's divine intervention into George's life.

One of my favorite books, Hearing Jesus Speak into Your Sorrow by Nancy Guthrie addresses how difficult it was for her as no matter how many prayers were said, two of her children died a couple years apart of a genetic disease. In hearing of stories like my brother and my husband, she said it would be painful to hear because, her children had not been healed and had died. As she pointed out, though Jesus performed miracles in Bible healing people of their ailments, he did not heal everyone of everything. And probably all of us have experienced that in our own lives.

Heck, I have not been healed of my chronic illnesses no matter how much I have begged God for mercy, I have not found relief in times of profound agony. This year, has been one hell of a year for George and me: we struggled through months of trying to discover what was ailing my body--why I couldn't walk, why I had hypersomnia, weakness/tingling in one side of my body--including two weeks at Mayo Clinic that were a frustrating time; I lost my beloved constant companion, Mr. Knightley suddenly to a complication of a disease where he died in the worst way I could have imagined and I still grieve the loss of his presence deeply; George unexpectedly got laid off of his job of 18 1/2 years; I had a miscarriage of a planned pregnancy. And George was in a coma and healing is still taking place.
God, save me, because the water has risen to my neck. I'm sinking down into the mud, and there is nothing to stand on. I am in deep water, and the flood covers me. I am tired from calling for help; my throat is sore. My eyes are tired from waiting for God to help me. -Psalm 69:1-3
God is not a vending machine, where we put requests in, push a button and get what we want out.  But, I won't discount that God was hearing so many voices crying in unison for my brother and twenty two years later, my husband in a similar situation. I truly believe that as 1 Corinthians 3:9 says, we are "co-laborers" with God and the author Richard Foster (of Prayer and The Celebration of Discipline) has helped me to see that is quite true in the area of prayer.

Let me quote what Nancy Guthrie geniously wrote, so that no one will misinterpret my meaning of how I view faith/prayer.
Some claim that strong faith is defined by throwing our energies into begging God for a miracle that will take away our suffering and then believing without doubting that he will do it. But faith is not measured by our ability to manipulate God to get what we want; it is measured by our willingness to submit to what he wants. 1.
God is sovereign and I can never expect to understand his ways. But, I do trust in my relationship with Him as it is a solid foundation that I can stand on, fall down on, grip tightly to, and count on to hold me up when the whole world around me has collapsed and turned upside down. It has been a journey to this place with God, a journey we all have the opportunity to walk. I find security in the Love God has for me and the freedom in the Grace He extends. I wish that all who read this would find that security and freedom.
These things I have spoken to you, so that in Me you may have peace. In the world you will have tribulation, but take courage; I have overcome the world. -John 16:33
 1. Guthrie, Nancy, Hearing Jesus Speak into Your Sorrow (Carol Stream, IL: Tyndale, 2009), 19.

Tuesday, September 11, 2012

Sharing My Heart & Hope With the World via CNN

A few months ago, I wrote a draft blog post about my beloved Mr. Knightley as he was an incredible gift of a companion. He had died suddenly on June 8th in a horrific way, and I there is no way I can post it as it is too emotional for me to edit what I have written. Knightley may have been a dog, but he was born out of the womb of my heart--my boy--connected to me in a very close way. We shared a special bond and I spent more time with him than I have ever spent with George as I was with Knightley almost 24/7.

Mr. Knightley knew what "I love you" meant. Every time I said it, he thought it was meant for him. If I was on the phone and Knightley was laying down next to me and I said "I love you" to the person on the phone, he would painstakingly with bad arthritis/hip dysplasia get up, look at me and love on me.

When I got chronically ill, my Mr. Knightley never left my side. My husband, George, would leave for work and tell him he was "Captain Knightley" in charge of taking care of me. And it is as though he knew he had been left in charge. I have had my fair share of passing out/drop attacks whether medication or Meniere's related. Every time I would come-to, Knightley would be sitting over me. If I had a panic attack, he would do the same thing. I can still feel his fluffy white chest hair on my face as though he was a soldier watching over the wounded until help came. He really helped to calm me.

This week is Invisible Illness Awareness Week and Lisa Copen, (founder of Invisible Illness Awareness Week and Rest Ministries, a chronic illness ministry) wrote a fantastic article, for CNN Health online that was posted today, "Talking to someone with chronic illness." Accompanying her article is a photo slide show entitled "The chronically ill: Hope looks like." I submitted a photo to Lisa to be considered for the slide show. I submitted a photo of  Mr. Knightley because how he cared for me as he always brought me hope and joy.

Here is a screen shot of the photo as it appears on CNN:




On the actual article, you can hide the caption so you can see the whole photo. Click here to see it; this photo is slide number ten.

The article by Lisa Copen is well written and has great ideas for what not to say and what to say to someone with chronic/invisible illness. In general, people with chronic illness are (or should be) understanding that not everyone knows what to say even though we do get weary of certain comments/responses. I would not have known what to say to someone like myself if I did not have chronic illnesses. But it is helpful for people who love someone with a chronic illness how to best support them/reach out to them.

So, as I still grieve my loss of my Mister Knightley deeply, I find so much joy that the gift he was to me is being shared with the world online during Invisible Illness Awareness Week  (September 10-16)!

Check out all the great stuff going on this week, including a free virtual conference, blogging events, posting photographs that show visible hope and more!

I still miss him like crazy, but Mr. Knightley, brought me companionship, care, love, support, hope and most of all joy that helped me get through each day and it was a gift he gave me that will keep me putting one foot in front of the other. 

Thursday, September 6, 2012

Thank You Thursday

I have been absent from the internet world, including blogging or keeping up on other bloggers, so I'm not sure if it is a weekly thing or just today, but I read a blog by Migrainista called "Thank You Thursday." I thought her idea was so wonderful that despite the type of day I have had, I would join in.


Dear Walter Elias Disney,

Hey, thanks for being the unique innovator you were. You sounded like a hard butt to work with and be around, but your talent, your innovation, your risk taking and your imagineering has created happiness that my husband and I constantly enjoy. From your first animated short, "Steamboat Willie" to your first feature length cartoon, "Snow White and the Seven Dwarfs," and then to your first unique theme park, Disneyland, you initiated a world of imagination that has woven itself through my life and continued to bring me joy as an adult. And by the way, I'm glad your wife, Lillian suggested you'd name your signature mouse "Mickey" instead of "Mortimer." Wives know best. :)

Dear JANSPORT,

You make some really rocking backpacks! I have used the same one for the last fifteen years and it is still holding up extremely well with the exception of some raggedy strings. The penny-saver in me felt that fifteen years was a good time to buy a new back pack. Yesterday, I bought a new one and I will sadly retire my older navy bag that had carried everything from high school books to honeymoon travel items, to hospital stay items. However I will keep this tired-looking bag in my closet rather than donating/throwing it out because hoarding worn-out things runs in my family. But back to the point, Jansport, I was pleasantly surprised to find that this new black backpack is as good a quality as the one my parents bought me fifteen years ago and has even more fun compartments!  Just wanted to say thanks for keeping your quality up over the years.

Dear Zoe,

I wish I could translate this into a way that as a dog you could understand, but I am sure you do in your own way.  Thank you for coming straight to me when I am having a panic attack without me calling for you. Thanks for digging your head under mine to lift it off the floor and keeping it there. Thank you for pressing your body so close to mine that I know you intend it to be calming and comforting. I know that my anxiety sometimes scares you, but you fearlessly and faithfully nestle into me. You must know you are integral part in bringing me out of the attacks. Thanks for being the gift you are.

Sunday, August 19, 2012

Gravity

The truth is that I am really unwell emotionally.

There are plenty of reasons for this and most I do not feel like sharing.

Depression and anxiety/panic attacks have come to dominate my life these last few weeks.

George and I watched one of our favorite dance shows, So You Think You Can Dance tonight on our DVR. The dances were reincarnations of Emmy winning choreographer Mia Michaels' SYTYCD choreographed dances.

Dancing is a part of my soul. I danced growing up; I competed as a ballroom dancer for Purdue's team as an undergraduate; George and I danced a special dance at our wedding.

I feel free to be me. I may not be the most talented dancer, but it does not matter.

Dance is a language of my soul.  And when I see a dance that speaks to my soul in a way that mesmerizes me....makes me want to watch it over and over again, I know it is because it is how I feel.

As music can sometimes express your emotions in a way you may not have been able to do yourself or even simply speak what you have not been able to say yourself, dance is that for me. It communicates what I feel in a way I have not been able to.

I saw a piece on So You Think You Can Dance choreographed by Mia Michaels to the song "Gravity" by Sara Bareilles and danced by Lindsay and Cole. (Sorry I don't know their last names.) The story of the piece is "addiction" but when I saw it all I could see was myself as the female dancer and depression/anxiety as the male dancer.

Depression and anxiety disorder are acting like gravity on my life right now. But it does not have the last word.

Please watch the video below.

If you are viewing this via email, please find the link to the video HERE

Friday, June 29, 2012

More Often Than Not: Migraine Awareness Month #29

June is National Migraine Awareness Month. Today's Prompt: Today is Chronic Migraine Awareness Day. People with chronic Migraine have a Migraine more often than not. Think of and share a random act of kindness that you could do for someone with chronic Migraine. 

Toni Bernhard, author of How to Be Sick, entitled her most recent article in Psychology Today"What Those With Chronic Pain or Illness Don't Want To Hear You Say" in which the first item listed was "Give me a call if there is anything I can do."  Using her example that being non-specific when giving support to someone with chronic Migraine is not usually useful, I want to come up with a random act of kindness that is specific.

Though my idea is not creative as I am stealing it from someone else, my random act of kindness that I could do for someone with chronic Migraine is something that a beloved friend of over ten years has done for me. She sends me random hilarious cards...some that only she and I would appreciate the humor. And earlier this year when I was going through a difficult patch with my health, she started sending me cards meant for occasions that she do not apply at all, such as "Happy Personal Assistant's Day" or "Happy Nurses Day" or "Happy 8th Grade Graduation" or "Happy Confirmation Day". How fun to get something else other than a "Get Well" card! :)  Her kindness has been the laughter that she brings me but also that she thought enough to take the time to get the card, write in it, and mail the cards all with a baby in tow.

Perhaps I won't start sending "Happy 8th Grade Graduation" cards to my chronically ill friends---they might think I'm looney tunes! But sending even just a paper note, with a fun message in a simple envelope covered with stickers with just enough room for the forty-five cent stamp would be something I could do to lift the spirits of someone with chronic Migraine.


If you are looking for ideas/concrete ways to support a chronically ill friend, the book by Lisa Copen called Beyond Casseroles: 505 Ways To Encourage a Chronically Ill Friend  has, well, 505 different ideas on how to support someone with chronic illness.

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com.

Monday, June 25, 2012

Through My Nonexistent Child's Eyes: National Migraine Awareness Month #25

June is National Migraine Awareness Month. Today's prompt is: "Through My Children's Eyes" Write a letter to yourself from your children.

Dude. What a difficult prompt for those of us who have had thus far had our dreams for parenting and having a family thwarted by Migraine disease. I saw that some bloggers wrote letters from their pets which is a cute idea. I loved reading a honest and loving letter written by Nancy Bonk's daughter, Sarah to her mother here.  It is so good to see how children can grow up in a household where a parent is suffering greatly from Migraines and be so well-adjusted, loving, compassionate and be able to see and appreciate the strength that her mother has.

In the Spring of 2010, I finally thought Dr. R and I had found the magic management plan for myself of a combination of treatments and I thought my disabling Migraines were behind me. By August of 2010, George and I were pursuing adoption (not wanting to put my body through the difficulties of a pregnancy). We worked on a grueling home study including attending many educational classes, writing a 10 page biography, going through interviews, getting background checks, spending thousands of dollars ect.

Our adoption agency, domestically only does open adoptions (meaning you keep contact with the birth parents) and so we were about to start our "Dear Birth Parent" letter which is a way for birth parents to choose the family they want to meet to potentially place their child with. We were emotionally invested.  But everything went haywire when I developed Meniere's disease ending up with surgery in March 2011 and in the end of November 2010, one of my Migraine preventatives stopped working which jammed up the works and I was back to being disabled by Migraine disease. Adoption halted.

It was heart-breaking. I felt that was our chance for parenting through adoption. Our one chance to prove to the many people evaluating us, but especially the birth parents, that I was healthy enough to parent. With open adoption, the birth parent picks the adoptive parents. Now, no matter how well I get,the chances of a birth parent choosing George and I to parent their child as my health history is less than stellar is quite low. And yes, we have to be completely up front with our health histories. I have heard other individuals with chronic illness waiting as long as six+ years to be chosen and many are never chosen. International adoption is usually a closed-adoption process, but most countries are more strict in their rules. In some, you cannot be over the age of 40. George just turned 40 in March. And in others you cannot be on prescription medication in order to adopt. Let's all laugh out loud about that one.

If George and I see God's plan is for us to parent, our options are limited: gestational carrier--lay terms means surrogacy (my estimates have shown baseline $30,000 to 60,000, not including the $11,000 for IVF as I'm not diagnosed with infertility) OR pregnancy where I carry the child.

So unless I win the lottery or have a generous village of people raise the money for a gestational carrier my only choice would be pregnancy. And that would be an adventure of sacrifice, challenge, stopping medications that help treat my Migraines, hormonal craziness, a necessary village of hands-on supporters and the unknown.

So after being educated on how difficult it would be for me to have a child after living through the years of chronicity that I have, here is a letter I composed from my nonexistent child:
Mommy, I think you would be a wonderful parent along with Daddy. I see how much you loved Brittany, Emily, Knightley and how much you love Zoe and Giselle. I know you would love on me a gazillion times more. Keep trusting that God has a plan for you and Daddy. Keep enjoying the family you have now and focus on living in the moment with joy. I wouldn't want you to miss all that God has in store for you right now while you are waiting and hoping that someday I will come along. And if we never get to meet, I know that if you keep your eyes on God and continue to live in the moment, you are going to have the best life with Daddy.  

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com.

Sunday, June 24, 2012

My Thoughts on Wish Lists for Migraineurs: National Migraine Awareness Month Blog Challenge #24

June is National Migraine Awareness Month.Today's prompt: Dear Genie: Put together a wish list for your life.

I am struggling with this prompt. My struggle with the prompt is that it can be a challenge to remain positive with chronic Migraines.

Well isn't making a wish list positive?

I think there is a potential for a wish list to be positive or negative and that depends on Migraineur's perspective when approaching the list. Sometimes, making a wish list as a chronically ill person only makes the person feel depressed because they cannot do what is on their wish list. But sometimes making wish lists are fun dreams that take us away from the confines of what limitations Migraines have put on us.

Copyright KLW
Copyright KLW
Copyright KLW
Copyright KLW
For example, I have a wish to take a beach vacation with all my friends with Migraines on an island that is only for us where we have gorgeous sound proof beach front homes (unless you want to open the windows to hear the waves) and the water is the most beautiful blue we have ever seen. The weather would be perfect with no possibility of triggers, the temperature would be comfortable and the sunlight would dimmed enough so that we could all enjoy the outdoors. We would have immediate access to health care providers and treatments that would be easily accessible and without a wait. We could have as many complementary massages, acupuncture sessions, hot tub soaks, and trigger-free delicious food that we would want. Oh and by the way, the food would not make us gain a pound; in fact, it would help us gain/maintain/lose weight: whatever our needs are. It would be a time where we would be surrounded by those who understand; it would be full of relaxation, friendship, and lots of quiet laughter. Anyone wanna go? 

Wish lists may even provide motivation. When I wrote my long and short dream goals in early May and shared about them in my post, Improving Stamina With Chronic Illness: How I'm Doing It, I approached my list with the mind set that if I could do even one thing, that would be great, and I wouldn't judge myself for not being able to do the other things. Disappointment is natural, but embracing who I am, my limitations and all is essential for my well being and joy.

I have a lot of hopes and dreams and desires which are what "wish" is defined as, but I have learned through the course of the unpredictability and lack of control I often have over my chronic Migraines, that finding joy in what my life is right now, even when things are hellish, brings me the best quality of life for me and for my family. Even if the item of joy/thankfulness is very small in that moment (i.e. Being thankful that I have a cozy quilt to cuddle up under.)  

If you'd like to read the goals that I had set for myself you can check out my other post  Improving Stamina With Chronic Illness: How I'm Doing It.

"National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com."

Friday, June 22, 2012

Unexpected Migraine-Free Experience: Migraine Awareness Month #22

June is Migraine Awareness month. Here is today's prompt:
Tell us about a time your plans changed due either an unexpected Migraine or an unexpected Migraine-free experience.

I have PLENTY of plans that have been changed due to Migraine over the last almost 7 years. I've missed every important event and small event you can think of.  However, I have a fantastic story to share about an unexpected Migraine-Free Experience.

As my health was quite crazy the most of the beginning of 2012, right now is the time that I am having unexpected Migraine-free experience. As a chronic Migraineur, currently I have only had 4 Migraines in 37 days. Oh yes, you read that correctly!!!  I have so many things happening in my life including the passing of my most beloved dog two weeks ago that could be triggers. Yet, I am flourishing and continue to improve. I am even able to wear my non-tinted prescription glasses in  places with fluorescent lights (even though I still get a bit sensitive, I don't get a Migraine.)

And to follow up on my previous post, I am driving regularly. I have gone shopping at stores after driving to them. And most exciting of them all, I am waiting to hear back from the instructor for a date that Zoe and I can take our annual test to get back in the process toward becoming an animal assisted therapy team! So excited to be closer to my long term dream goal that I thought was a long distance dream. 

I really wish I knew why my chronic Migraines have suddenly dropped in frequency. I have a great regimen that is balanced with medication and holistic measures. Perhaps everything I discussed that I have been doing in my last post has helped?  But honestly, I have done everything similarly before and not have these results. I think my brain just happens to be receptive neurologically in a good place right now.

I'm gonna continue the motto I have had when days were hard: Take one day at a time. Right now, I am going to enjoy each day and each moment and not being concerned about the next day.

"National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com."

Tuesday, June 5, 2012

Improving Stamina With Chronic Illnesses: How I'm Doing It

2012 had a really rough start in store for me. It was confusing and frustrating and I have learned so much more about my body and how complicated is. I had many symptoms that physically immobilized me and I had completely lost my stamina! Once I figured out what was wrong and things started to improve a bit, I realized that my body needed to get stronger. BUT, there are NO handbooks on how to improve your stamina when you have chronic illnesses where each day's limitations are so different.

"Increase Stamina" and "Chronic Illness" are like oil and water. Trying to do daily tasks on a regular basis is often impossible and exercising with chronic illness has a different meaning entirely than it does to the "average" world. But, increasing stamina. Ha! For the chronically ill, that is INSANE.

But, I kept thinking "What do I do? Give up?!" That seemed even more depressing than looking up at the million pound bounder I was gonna have to push up a never ending steep slope.

I figured I had to start somewhere. Mentally, I started in a place of grace. I told myself that I would not compare myself to anyone. I told myself that I would celebrate every baby step of accomplishment. I decided I would not beat myself up for what was not under my control. And I was determined to try...because really, what did I have to lose? I was starting from a pretty low bottom: I had already moved up from bed-bound with a mini-fridge and microwave on my nightstand, but was still someone who did not take a shower but once every 4-5 days because it was so draining physically and difficult Migraine-wise.

Next, I did what I know how to do really well: make goals. Now, making goals with chronic illness really is a different ball game in that actually accomplishing the goal is not really what is most important, but the fact that you tried. I started with  a long term dream goal. My long term dream goal was something that at that time I could not imagine doing, but would hope to do some day. It was not a fantasy, like climbing Mt. Everest, but a dream that might possibly maybe hopefully be accomplished if everything lined up right.

My Long Term Dream Goal: Volunteer in some form, preferably with my dog, Zoe, as an animal assisted therapy team. (Zoe and I passed our therapy test November 7, 2010, but unfortunately my health took a downward spiral and I never got to take the next steps.)

Then I wrote down a group of short term dream goals. Short term dream goals were things I could not do at all when I wrote them down, but really wanted to be able to do. In writing them, I knew it was a possibility I might not be able to do them, but they would be more possible than my Long Term Dream Goal. And finally, I wrote baby step items under the short term dream goals. Baby steps are things to work on each day to get to my short term goal. Baby steps are not necessary always building blocks leading up to the end goal, but may be something that helps me get there. I promised myself that no matter how bad I felt, I would pick one baby step from one of the goals and do it every day. My choice was "Go up and down the stairs twice a day." And if I did that, I could feel quite accomplished for the day!

My Short Term Dream Goals and Baby Steps (an * means completed as of today, June 5th) 

STDG: Walk Around the Lake (neighborhood pond) Regularly
-Stand up while reading, watching tv, on computer, doing laundry*
-Up & Down Stairs 2 times a day* (Stopped counting at 20 times)
-Stretch daily*
-Mini-exercise bike in front of tv or while doing a puzzle *
-Walk laps around back yard*
-Walk to 1st bench near lake*
-Walk to 2nd bench*
-Walk around lake* (have done this 3 times since May 27th)
-Pilates DVD: Abs* Arms/Shoulders* Buns/Thighs (currently every day)
-Recumbent Exercise bike* (I started at 5 minutes and currently up to 20 minutes! 4-5 times a week)
-Walk to friend's house

STDG:  Drive Regularly
-Drive once around the block*
-Drive around neighborhood*
-Drive to a neighborhood park*
-Drive on 45mph road for a few seconds*
-Drive on 45mph road for a few minutes* (As of June 23rd,longest distance driven: 7.0miles!)
-Drive to store in the next village over* Completed June 23rd
-Drive to store in neighborhood and shop* Completed June 23rd
-Drive to distance store and shop
-Drive to Whole Foods and do whole shopping list alone

STDG: Cook Every Meal*
-Gather easy & healthy recipes for crock pot*
-Gather non-crock pot healthy recipes*
-Stop relying on take out for every meal & eat healthy foods*
-Increase veggie and water intake* (Found I love peppers in this order: red, yellow, orange, green.)
-Cook one meal a week* 
 -Move up to increasing # meals cooked per week* (With exception of some weekend meals, I currently cook every meal every day from scratch!) 

STDG: Laundry*
-Sort laundry more often.*
-Do laundry once. *
-Do laundry every two weeks.* (Currently, do whenever needed.)
-Do linens every three weeks.* (Currently, do whenever needed.)

STDG: Get Out with George on Weekends
-A store.* June 13th
-A restaurant.*June 8th
-A local park.* June 15th
-Botanic Gardens* June 2nd
-Planetarium
-Field Museum
-Museum of Science & Industry
-Brookfield Zoo* May 13th
-Do any of the last 5 only partly with wheelchair.
-Do all of the last 5 without a wheelchair.

STDG: Oranization
-I won't list all the things I want/need to organize. But so far, I have done the DVDs, nightstands, medicine storage area, three food cabinets, the freezer and the fridge. Currently I am in the middle of organizing a closet I threw everything into for when our cleaning ladies came the first time in April.

STDG: See a Local Friend about Once a Week
-Text Regularly*
-Call once a week
-Have over about once a week (Been successful three times.)
-Go to her house.
-Go out and do something fun together.

I must note, that thankfully, my body has also cooperated. My CDH and Migraines are significantly down in frequency and intensity. I have changed some things to my protocol that probably made this happen. I could not have done this with pure determination. I could not have done this just because I wanted it to. It just so happens that my body was improving and allowed me to push it a little farther every day.

There were days when I pushed too far, and then the next day I spent "paying for it" on the couch or in bed. It was so frustrating wondering where my limitations were and how far I could push without "over-doing" it, which is so easy for those of us with chronic illness to do. I learned early on that RESTING was just as important as doing.

At first, I felt like I was not making any progress, but George would remind me what I used to be doing...how I used to be in bed or on the couch. How I couldn't even walk up and down the stairs without a struggle and support. Keeping a log of what I do on a daily basis has helped me see how far I have come.

I am really thrilled each day.  I have been wanting to share this with you all how much improvement I have made and how well I am doing. I hadn't yet because the computer takes me away too long from taking care of myself. But, now I am so glad I took the time. I know so many people have been praying for and supporting me and I just wanted to say thank you for cheering me on.

June 24, 2012 update: On Long Term Dream Goal, waiting to hear back on date for Zoe and I to take our annual test to begin moving forward in becoming an animal assisted therapy team.

Sunday, June 3, 2012

The Devil of All Migraine Triggers: National Migraine Awareness Month #3

 AwarenessMonth2012BC2Today's Prompt: Just shoot me now! What's your worst Migraine trigger? Can you avoid it? How do you handle it?  

There is no hesitation here that my hormones are my worst Migraine trigger.

Can I avoid it? Well, nope. I'm a woman. It goes with the territory.

How do I handle it?  I take a low dose estrogen birth control pill continuously going as long as I can between periods. My longest is 5 months! Then I have a week of the devil of all Migraines, menstrual Migraines, that keep me flat and in bed for 7-9 days. (You can see why I don't want them every month). I use Frova twice a day for five days and Toradol injections for the unspeakably horrid cramping. Basically, I just try to get through it each day by staying in my dark room, keeping horizontal with distraction by computer, television, movie or book on tape. Emotionally I keep reminding myself that it will not last forever.

"National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com."

Saturday, June 2, 2012

Tea with an Influential Journalist: National Migraine Awareness Month #2



Today's prompt: If you could invite someone (any living person) to your home for tea for the purpose of explaining Migraine disease to them so they would truly understand it, who would it be and why? 

There are so many people I would want to do this with: family members of Migraine friends, celebrities, law-makers. However, my top choice would have to be an influential television journalist such as Diane Sawyer or Barbara Walters, both who have done influential television pieces on topics that people may not know about or understand. Barbara Walters did a piece on transgender individuals that gave wide-spread attention and understanding on a topic some circles may have seen as a "taboo" subject. That piece certainly enlightened me on something I thought I knew about but clearly did not.  Diane Sawyer recently did a powerful piece on Native American reservation and the atrocities that occur such as frequent suicide, 90% rate of alcoholism and the wide spread depression that has come over this group of individuals that live in our own country.

Unfortunately many people think they understand what Migraine disease is and so it is not something that tends to get attention by the media. But, I believe if I could speak with someone like Ms. Sawyer or Ms. Walters (with the support of other Migraine advocates), we could help either woman understand the misconceptions of Migraine, something people think they know about but do not really know about. After helping them truly understand Migraine disease, I believe seeing how many unique, exasperating and provocative stories of  millions of people who are affected by Migraine disease would be something a newscaster would see as a unique opportunity to share. Our story is a story untold that needs to be told.

In lighting a fire of passion of one of these influential journalists, I believe we could get more awareness, more exposure which would hopefully lead to education of their viewers and most vitally,  pressure on congressional leaders to make change for the better of us all.

Ms. Sawyer and Ms. Walters, you may take this as a formal invitation for tea at my home at your convenience. Though the tea cakes will have to be gluten free as it is one of my Migraine triggers!

"National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com."

Friday, June 1, 2012

My First Migraine: National Migraine Awareness Month #1

http://terirobert.typepad.com/.a/6a00d8341ce97953ef016305ae7f84970d-pi
My goal is to participate in a majority of the daily Migraine Awareness Blogging Challenge in June.

Today's prompt: Share the story of your first Migraine, what it was like, if you knew what it was, what you did, how you felt.

It was starting to get brisk towards the end of October in 2005. I was driving to Delacey Family Education Center where I was one of fourteen Speech Language Pathologists working with children with disabilities aged three to five years old. One of the special education classes I worked in was going on a field trip to the pumpkin farm that day and I was tagging along to do integrated language therapy.

Working in that old moldy DeLacey building for two years, by around May of 2005, I had started to have a daily headache whenever I would go into work. Then my head would improve when I left. I have had headaches my whole life though daily headaches was a new thing. In high school, I popped four to five advil at a time (*do not do this*) for my frequent headaches. 

But October 25, 2005 was different. I opted to drive myself rather than take the bus to the pumpkin farm. I was feeling woozy and nauseated as I interacted with the children. Toward the end of the time, I started to feel like I was going to vomit and I could not think straight. So, I drove back to the school to tell my boss was going home.

On the twenty minute drive home, I could barely make out the road. Vomit was gurgling in my throat, threatening to cover the steering wheel. I was not thinking clearly. Though it was cloudy, the bright skies were making me squint and every movement and sound seemed to pierce through me like shrapnel. I hastily dialed my fiance and then my mom but got voice mail for both. By the time I pulled into a parking space of my condo complex, I didn't think I would make it inside. I crawled up the stairs to the second floor, reaching up and fumbling to get the key in the lock. I crawled three feet to the bathroom and vomited.

I clearly remember laying weakly on the sea green plush pile bath rug and feeling the sharpest pain I had ever felt in my life inside my head. It was so painful that I could not believe that such physical pain was possible without it killing a person. I could not move, and I thought I was dying. I do not know how long I lay there.

The phone rang and I heard the voice of my fiance of just ten days, George, coming from the land line answering machine and I thought he was going to find me dead laying on that hideous sea green plush pile toilet-hugging bath rug.

I had no clue what was happening to me. I vaguely remember crawling into bed. The next day I made a futile attempt to return to work, only to leave early and barely making it back to my bed. George took me to immediate care that night.

That first Migraine did not abort. In the first two days, I was at the immediate care twice and emergency room once. My mom, who lives out of town and is a nurse, flew in to take care of me. By November 2nd, I was admitted to a hospital for dehydration as I wasn't eating drinking because I was so nauseated from the Migraine.

The neurologist that treated me in hospital and eventually outpatient was arrogant though obviously did not know what to do with me. I was under his care from November 2, 2005 to February 14, 2006 and I was given daily medication that gave my brain NO chance to abort the Migraine and only perpetuated it. Over those four months, that neurologist never said the word Migraine to me or mentioned that he thought that was what it was. However he wrote "Migraine" on my FMLA papers I asked him to fill out on February 14th, 2006. That same day, when George asked him what was wrong with me, the neurologist told George in front or me, "She has depression."

A Migraine that lasts more than 72 hours is called Status Migraine. By the time I had an appointment with a headache specialist in downtown Chicago on February 17, 2006 I was so bad off that the Migraine/headache specialist who admitted me to their inpatient care said he could not believe the poor and neglectful treatment I had received from the prior neurologist.

I cannot say when my first Migraine finally aborted because I was Status Migrainosus for a long time and my body had become non-responsive to medication.

I hope that what you will gather from my first Migraine experience is that what you do from the beginning (choosing a doctor, finding treatment, self-education, community support) can affect not only the progression of your Migraine, how your brain chemistry changes and how well you cope.


After my first Migraine experience:
-I wish I had not blindly trusted a doctor. Your gut instincts are usually the best.
-I wish I had investigated and read up on the medications I had been given and not simply taken them with blind trust they were the appropriate treatment and would not be harmful to my system.
-I wish I had listened to the nurse in the first immediate care I went to that told me I should seek out a specialist in the city and not a neurologist in the suburbs.
-I wish I had gotten online and educated myself by reading research articles, and going to trusted medical websites. (Migraine.com, Migraine at Health Central)
-I wish I had plugged into a positive, encouraging and educational support community earlier than I did.

I am thankful I have learned so much from that first experience and am in a much better place than I was then!

June is National Migraine Awareness Month. "National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com." There are so many activities to be involved in and you can read about the events in a comprehensive way at Somebody Heal Me: 2012 Migraine Awareness Month Events: Chats, Blog Prompts, Giveaways & Much More #NMAM. If you want to take part in the blogging challenge you can find them HERE.