Tuesday, November 29, 2011

Announcing December 2011 Headache & Migraine Blog Carnival: Call For Submissions

The theme of the December 2011 Headache & Migraine Disease Blog Carnival carnival will be ""Reducing Holiday-Related Migraine Triggers: Share your best advice, tips & tricks for minimizing triggers while still fully enjoying the holiday season." As always, posts on any topic related to migraine disease or other headache disorders are also welcome.

Submissions are due by midnight (the end of the day) on Friday, December 9. The December carnival will be published right here at Fly with Hope on Monday, December 12.
Please note: Unfortunately some of us have had problems with the submission form on the blogcarnival.com site from time to time, so I suggest you just avoid it. Apologies in advance for any inconvenience.
Please email all your submissions to Diana Lee (somebodyhealme AT dianalee DOT net).

For more information about the carnival visit the overview page here: Migraine Blog Carnival. Please spread the word to any migraine or headache, pain or chronic illness bloggers you know and consider posting an announcement on your own blog if you have one.

My Journey with OCD-Like Symptoms

I have been having unique symptoms for years, but George and I always attributed the symptoms to something else-something related to my chronic illnesses. They went as quickly as they came and we did not think twice. However, gradually, for a couple months now, the symptoms have become so intense that I have struggled to function even on days that I have tolerable head pain.

On November 10th, 2011, I went to the psychiatrist, Dr. K, that I have seen for almost eight years for anxiety and depression. I told him in detail what was happening half expecting to be committed and half expecting him to increase my medication and send me on my way. But neither happened.

I was told I might have Obsessive Compulsive Disorder.

Dear readers,  I am so glad to finally get this post together so I might share with you what has been happening in my life. As you'll read I've been so drained that doing anything is an effort. I am hoping that sharing this intense struggle in my life will encourage you to feel comfortable to share your struggles as well. So many people think that they must  "hide" from their friends and loved ones parts of who they really are. But, how can we truly feel loved if we are not known? I'm not suggesting everyone speak on a public platform like this, but telling one person in one's life a part of who one is can be freeing. 

I am not ashamed of my possible OCD. I am certainly overwhelmed by the symptoms and do not wish to have what seem to be OCD attacks in front of people because it is such a vulnerable place to be, but I'm not ashamed.  I am not ashamed of my OCD-like symptoms because it is a disorder where my brain has malfunctioned just as I am not ashamed of my chronic Migraines where my brain does not work properly. From the moment I got this diagnosis, it has not changed how I thought of myself. In fact it would be a relief to have an explanation for what has been happening. OCD is just another part of my journey.

What causes OCD?
Per Jefferey Schwartz, M.D, UCLA researcher and author of the book, Brain Lock: Free Yourself from Obsessive Compulsive Behavior, OCD is thought to be an imbalance of the biochemicals in the brain and a "locking" of four parts of the brain: the occipital cortex ("the error detection system"), the caudate nucleus ("the automatic transmission and filtering station for the front part of the brain that controls thought"), the thalamus ("the central relay station for processing the body's sensory information) and the cigulate gyrus ("It's wired into your gut and heart-control centers").

Basically according to Dr. Schwartz, "The brain starts sending false messages that the person cannot readily recognize as false." In short, my OCD brain lies to me. It is hard to tell the difference between a real message and a false one.  For example, a person with OCD may be holding the prongs of the cord of an unplugged curling iron in their hand and still be getting a message from their brain that the curling iron is not yet unplugged.

What is OCD and how does it affect me?

***Please note that the following may be distressing to read.***

OCD is an anxiety disorder, not a personality trait. It can manifest it self in many ways: obsessions about dirt/contamination, need for order/symmetry, repetitive rituals (think Jack Nicholson in the movie "As Good As it Gets"), hoarding, nonsensical doubts, religious obsessions and obsessions with aggressive content.

Dr. Jeffrey Schwartz, author of Brain Lock describes obsessions and compulsions well. I'll be using his definitions to share about my OCD (bold, italics and color are mine):
Obsessions are intrusive, unwelcome, distressing thoughts and mental images. The word obsession comes from the Latin word meaning 'to besiege.' And an obsessive thought is just that - a thought that besieges you and annoys the hell out of you. You pray for it to go away but it won't, at least not for long or in any controllable way. These thoughts always create distress and anxiety. Unlike other unpleasant thoughts, they do not fade away, but keep intruding into your mind over and over against your will. These thoughts are, in fact, repugnant to you."
My obsessions and compulsions fall into the category of "aggressive content" and more specifically self-harm. I am decidedly NOT suicidal, yet for months, have urges to do things that would result in self- harm or death. To reassure my readers, Dr. K, my psychiatrist said, that if I were suicidal, I would have already killed myself a long time ago. Scroll back up and read the "Obsessions" definition again. Remember: these thoughts are intrusive, unwelcome, distressing and keep intruding over and over against my will. Against my will. I am not suicidal. I have OCD. Dr. Schwartz wrote:
People with OCD may even fear they are going crazy--they know that their behavior is not normal. Indeed, the behavior is apt to be foreign to their personalities or self-image.
My obsessions (intrusive, distressing, intruding against my will over and over) surround thoughts of hurting myself: jumping from high places (off of tables, over balconies), biting myself, hitting myself in the head with an object, seeing myself hanging in the hallway by a dog collar, choking myself with an electrical cord, stabbing myself with silverware and the list of unwelcome thoughts and mental images goes on.

As you can imagine, these obsessions create a huge amount of anxiety in me as they are unwanted and assaultive to my spirit.  I see myself dead and hanging in the hallway on an almost daily basis. That in itself is extremely traumatic.
Compulsions are behaviors that people with OCD perform in vain attempt to exorcise the fears and anxieties caused by their obsessions. Although a person with OCD usually recognizes that the urge is ridiculous and senseless, the feeling is so strong that the untrained mind becomes overwhelmed and the person with OCD gives in and performs the compulsive behavior. Unfortunately, performing the absurd behavior tends to set off a vicious cycle. It may bring momentary relief, but as more compulsive behaviors are performed, the obsessive thoughts and feelings become stronger, more demanding, and more tenacious."
Intrusive thoughts (compulsions) come into my head and by trying my best to ignore them, I have panic attacks and high levels of anxiety that lasts for hours. The OCD makes me think that if I follow through on a compulsion (which is my obsession) I will feel better. So, I do and that starts a horrid cycle of continuing to do self-harm.

My obsessions turn to compulsions when I attempt to follow the false message being sent by my brain. My compulsive behaviors are to do the actions that my OCD is telling me. I have jumped off tables, put my leg over the balcony, bitten my arms so badly that bite marks and bruises lasted for weeks, hit my head with any object I can get my hands on, and used a spoon to make stabbing actions at my chest.

The week before Thanksgiving, I ran screaming into the bedroom slamming the doors because I saw myself-dead- (I call her the woman) hanging from a hook with a dog leash in the hallway. I saw the woman come down off the hook and come after me with a dog leash trying to get me to hang myself. Thus the screaming and frantic attempts to keep myself safe.  I see this woman often. (Refer to "Obsessions" definition:  intrusive, unwelcome, distressing thoughts and mental images intruding over and over against my will.)

When I shared this with my brother, he asked, "Do you really see the woman, or do just you think you see her?" And my answer was "Both". My brain is sending a false message that there really is a woman trying to get me to hang myself standing in front of me. So, my brain is telling me that I really see her just like I see George or my brother. On the other hand, in reality, she is not there, so from someone else's point of view,  I just think I see her. 

I know this all sounds wild and crazy, but I'm not crazy, my brain is simply locked/stuck and it is my job through therapy to attempt to unlock it.

How do I treat my OCD-like symptoms?
Through using the bio-behavioral therapy techniques-four step treatment program in Brain Lock, I am learning how to start to manage my symptoms. This four step treatment program has been proven in research studies to enable people with OCD to change their brain chemistry. According to Dr. Schwartz, OCD is a chronic condition that will not go away, but through therapy it can be managed at some level. Often people with OCD are treated with SSRI medications. As my body and SSRI's are not compatible, I am unable to take medication to find relief.

How am I doing?
I am exhausted mentally and physically. I often find myself unable to remember things or find a day has gone by and I have not accomplished anything because I find it extremely difficult to think. My anxiety level is quite high even with medication. I find myself coping with panic attacks throughout the day as I am resisting the urge to do my compulsions. I scream so much I get hoarse a lot.

Since my OCD-like symptoms became daily and more severe, life has been extremely difficult to navigate. I can be triggered by anything and at anytime. My parents were here for three hours a couple weeks ago and I was triggered by the silverware on the table. I am triggered by discussing OCD. I am most vulnerable at the end of the day, when my other chronic illnesses have taken a toll on me. Thanksgiving day was a trial as it was at George's aunt and uncle's house-nine hours from home- with seventeen people. I used my dog Zoe, who I trained as a therapy dog last year, to be my own personal therapy dog. I spent five days over the Thanksgiving weekend with my in-laws but spent most of it in my room, in bed, trying to cope with OCD-like symptoms. Unfortunately I missed out on spending a lot of time with my loved ones.

I am only at the beginning of my biobehavioral therapy treatment process, so as time goes on I will be able to use my learned techniques to change the severity of my issues. Already we have seen baby steps of progress. Though last night, when trying to confront one of my fears, I actually passed out from fear. I thought that only happened in the movies with silly old women calling for smelling salts. Unfortunately I was holding my 8 year old dog, Mr. Knightley at the time but as George was with me, neither of us got hurt.

What can you do to help?
My brother made me feel quite loved when he asked, "How can I help when you are going through this?"
*If you are physically with me when I have an attack, the best thing is to allow me to do what I need to do to get through it using my therapy techniques. It is probably best not to try to engage me, but continue with the activity you were doing.
*If you are not someone that is physically in my life often or ever, being understanding that my energy is lower than normal is important to me.
*I'm fine talking about my OCD-like symptoms.  Its not a taboo thing. If you have questions, please ask. I really appreciate my family members who have asked me straightforward questions. I am an open book. OCD is more common than once thought.
*Do not feel sorry for me. My life is full of joy. This is just another part of my journey.

If you made it to the end here, I am extremely thankful you stuck it out! Hugs to you!

Tuesday, November 22, 2011

Stand Up: AHDA Action Alert

The Alliance for Headache Disorders Advocacy has sent out an urgent action alert. If you are reading this, please take the minute it takes to sign your name to a petition that will be going to congress.
The goal of the petition is to help end the federal neglect of chronic disabling headache disorders.

The action alert email reads:

Help end the federal neglect of chronic disabling headache disorders

Migraine and other chronic headache disorders cause tremendous suffering, disability, and economic costs in the US. Federal research funding agencies, such as the NIH, have neglected this burden partly because Members of Congress, with oversight of these agencies, are unaware of the huge scope of the problem.

A US congressional hearing has never been devoted to headache disorders. We seek to remedy this and educate your Members of Congress. But we need your help.

Right now, we ask you to please sign an on-line petition urging congressional hearings to be held on the impact of headache disorders. It takes only a minute to sign and we will deliver the signed petition to Congress.

Also, please forward this email to everyone and anyone that cares about someone suffering with a disabling headache disorder. Please ask them to sign too, and then pass the email further onwards.

Together, we can ensure that our lawmakers in Washington, DC appreciate the urgent need to reduce the huge burden of migraine and headache disorders.

Thank you very much, and happy Thanksgiving.

The Alliance for Headache Disorders Advocacy
 *end email*

There are over 37 million Migraine warriors. Let's stand up for ourselves! If we don't, who will?!?!?!

And for those of you who are loved ones, friends or chronically ill yourself, please stand up for us!

Please click on THIS LINK right now

If you got the email alert, be aware that the links on the email did not work. I have corrected them below.

Blog it. Email it. Facebook it. Twitter it. Stand up for it.

Sunday, November 20, 2011

Coping With a New Diagnosis: PFAM Carnival

FibroDaze is hosting PFAM carnival that will be up on November 23rd and her prompt is: "when you have made some sort of peace and are coping with the chronic illnesses you do have and “life” throws you curve balls in the form of a new diagnosis, how do you deal? What are your coping mechanisms? How do you come to terms with the new diagnosis?"

This prompt is very pertinent for what I am dealing with currently. This year has been a year of curve balls. I was diagnosed with yet another disabling chronic illness, Meniere's disease in January 2011, which ended up in surgery on my head in March. It was devastating to have this disease, but more so because it sealed that my husband and I will not be able to become parents.

It has taken me all year to come to peace with my life as it is, even before I was diagnosed with Meniere's. And not just a peace, but a joy in the nooks and crannies of what my life is. I have found spaces where I have purpose: writing & photography. I am NOT my diseases/conditions even though they disable me and dictate what I can do in my life.

So, this November 10th  (less than two weeks ago) when I was diagnosed unexpectedly with yet another chronic and currently quite disabling condition, I felt I had been thrown a huge curve ball. Although this diagnosis is chronic life-changing and life-challenging, it has not depressed me in the way that my Meniere's diagnosis did.

How do I cope?
*I learn about my diagnosis.
            -Knowledge is power. The more I know the truths of what my diagnosis actually is I can feel
             more confident in what I am facing.  I am also able to discuss it with more confidence with
             those who have many questions. And I am able to find hope in possible treatments. I find
             this information by asking my doctor for reliable books and reliable internet sites.

*I reach out to those closest to me: those who I know I can break down in front of and feel safe and validated.
               -A new diagnosis can be quite overwhelming. and so I find that in the beginning when a
                diagnosis is fresh, I keep the group I share it with small. Taking care of myself is priority
                number one. As I feel more comfortable and knowledgeable, I share it with more people.

*I give myself the space to process what it means to have this new diagnosis and also space to grieve that things have changed.
              -I process by writing in my journal, by talking with God, by talking with George, by talking
               with my counselor. I find outlets to express my feelings.

*I delve into something that gives me joy, giving me a break from the grief.
             -As I love the art of taking photographs, I submerse myself in that.  I also love to cook;
              although this is not something I am able to do often, when I can, I do because the
              creativity of altering recipes and creating something delicious holds my attention
              for a while.

How do I come to terms with a new diagnosis?

*Coming to terms is an active and passive act. It takes time.

*I come to terms with a new diagnosis by making sure that I do not let my emotions overwhelm me to a point that I am not able to move forward with my life.

*Living with chronic illnesses means living WITH them...not despite them.  Learning how to live with a new diagnosis is critical in being able to move forward.

*Lately I have found my self writing "I have __________." The more I write it and say it out loud, the more real it becomes and the less devastating it is to write/say.

Chronic illness often makes us look into the face of a life of adversity and choose to find joy and life and love. When faced with another diagnosis, this is incredibly important to remember. We need to give ourselves the time and the grace to grieve what we have lost. And then we need to move forward and discover what life can be like with this new challenge.

As for my currently new and raw diagnosis, it is quite challenging for me right now to even think. I am quite verbal person, but as part of this new diagnosis and also my emotional reaction to it, I find myself unable to think, shutting down and often times withdrawing. I know at some point, whether the symptoms are better controlled or not, I will find a way to live with a fullness that I had before this diagnosis and all of the prior diagnoses.

Until then, I will give myself the grace to walk through this part of the journey how I need to as I know from previous experience, the rawness of it all will at some point fade away and I will find a new normal.

Tuesday, November 15, 2011

Dum Geit!

I am struggling very profoundly because on Thursday I received another diagnosis completely unrelated to Migraine disease or Meniere's disease or Fibromyalgia or IBS that is very distressing to me in many ways. It is not terminal, but is chronic and currently has a vice grip on my life. As I am able, I will share more.

Since my diagnosis, I am have been having a difficult time coming out of my shell and talking with those I love, responding to emails and writing on my blog. So this post is one of many efforts of throwing myself out there and gaining some confidence back again.

I am coping by watching old movies. If you're a frequent Fly With Hope'r, you know I love old movies from the 1930's and 40's. They are like old friends to me. Last night, I re-watched part of of one of my favorites, 1948's I Remember Mama with Irene Dunn that had originally been a play. I want to share with you one of my favorite scenes.

To set it up, the very dominant head of a Norwegian immigrant family, Uncle Chris, has paid for his nephew, Arne, to get a critical surgery so that he can walk without physical difficultly.  He is the only visitor allowed.

Uncle Chris?
Yes, Arne?
Does it have to hurt like this?
If you want it to be well and not walk always like Uncle Chris, it does, for little.
(Arne moans.)

Is very bad?
It is, kind of.
Arne? Don't you know any swear words?
Don't you know any swear words? 
No, Uncle Chris. Not real ones.
Well, then I tell you two fine ones you use when pain comes again.

I tell you Norwegian swear word. Is better.
When pain comes again, you say "dum geit." It help plenty.
I know. I have pain too. I say it all the time.
And if pain is very bad, you say "dum geit!" (yelling)
Just like that. Dum geit! But only if is very bad.

(As Uncle Chris sings Arne to sleep, Arne randomly yells "dum geit")
- It help, huh? - Is good! Then you sleep some.

(A nurse had been listening in and speaks to Uncle Chris.)
That's terrible. Teaching a child to swear.

You don't know what "dum geit" means, eh?
Do I look like a foreigner?
If you were, you would know that "dum geit" in Norwegian means: "Stupid old goat."

Sometimes we just need to yell, to feel better--whatever we are yelling about we need to get it out. So many people keep their emotions inside until they come out in a self or other-destructive manner. We can't lock feelings away forever.

So, if you have cranky pants on, are upset about your illness, have had a bad day or have been diagnosed with something else like me, yell. Not a yell-er? Try it! Perhaps it will help you feel better, perhaps it won't. Maybe it won't change anything, but I know it sometimes makes me temporarily feel better. And it is one way that helps me release pent up emotions.

Be sure not to yell at any humans or animals. We wouldn't want our emotions to come out in an unmerited fashion at someone/thing we love.  Perhaps get an object and yell at it, or yell at God (he can take it) or just yell in an empty room to get it out. And if you're surrounded by people, grab the nearest pillow and yell into that.

Today I'm yelling because I don't want to deal with another illness. Will you yell with me? What do you need to yell about/get out today?

Dum Geit!

Tuesday, November 8, 2011

Birthday: Number 32

Yesterday was my birthday. I woke up in a major funk. My husband came into the bedroom softly singing "Happy Birthday" so as not to bother my head. I was depressed, anxious, in pain, and did not want it to be my birthday.
We have a tradition where George brings birthday hats, puts them on the dogs, himself and me and we sing songs in bed. Knightley loves the "Happy Birthday" song.

George had gone to get the hats, and when he returned, he said, "You've gotta see this." I followed him into another room expecting to see our "HAPPYBIRTHDAY" sign hanging up. But, he pointed out the front window and I started crying happy tears.
Someone had tied three happy birthday balloons to our mailbox and there was a present and a card inside the mailbox.This photo was taken at around 7am, so this person was very sneaky. :)

I was in such a crummy funk, but having a friend show that she cared this much by going out of her way to surprise me on my birthday? Well, there aren't words for how special it made me feel.

My Migraine was tolerable enough that I was able to cook, which I love to do but usually do not feel well enough to do.
 I am very proud of these blanched tomatoes. It was my first attempt at blanching tomatoes for my first ever home-made tomato soup.  I also made home-made gluten free soft pretzels and gluten-free yeast rolls. Over this last year of having to cook from scratch, I have found joy in cooking, but lately have not been able to very often. So, when I can cook, it is happy day for me and exactly what I wanted to do on my birthday!

Since I've been chronically ill, birthdays have been difficult for me and it stings even more when people say "I hope you have a pain-free day." Ugh. I haven't been pain-free in six years. Can they wish me something else? Like joy? Now that is something I can actually do something about. I can choose to have a joyful birthday even if I feel crummy.

George brought home a gluten free bakery cake which was so sweet that I could not even finish half a piece.

IWe got out three board games that I have been wanting to play. We got through two games of INGENIOUS but stopped when I was too tired to play anymore (or maybe it was because George had won both games!) I love Turner Classic Movie channel and we cuddled on the couch while watching a movie I had never seen, "Roberta" with Irene Dunn, Ginger Rogers & Fred Astaire.  I fell asleep about ten minutes into the movie. George fell asleep too. We both woke up--still wearing our party hats! :)

 It was a joy filled day. 

Thank you.

Saturday, November 5, 2011

Five Things That Changed my life

Today's prompt: In regards to being a patient/health activist: What are 5 things that have changed your life? Were they events? People? Succinct moments or things that progressed over time? Feel free to write a few things that changed your life for the better or for the worst or whatever you think “changing your life” means. 

*Connecting with other Migraineurs online via MyMigraineConnection, Facebook and blogs.                  
-This changed my life because I finally found people who validated my experience. They saw me, understood me and supported me unconditionally. And they still keep me afloat, daily.

*Reading A Third Space For Migraine Patients
-This article challenged me to find a third space: something that I am passionate about where I push through the pain in order to find peace inside. I found that focusing on my love of photography has helped me to get away from thinking about my chronic illnesses. Just this morning, I got all bundled up to go outside because the rising sun was casting a beautiful light that I could not resist. I used to think that the only time I could get a break from my Migraine would be in sleep. But now, I am transported through the lens of my Nikon 5100 to a world of joy.

*Learning to listen to what I think of me and not what others think of me.
-This changed my life as I used to be a people pleaser. I did not want anyone to have a reason to say a bad word about me. I was very concerned about what others thought of me. This has changed dramatically as I have had countless episodes in public that in the past I would have found incredibly embarrassing. I know myself and I had to learn to trust that what I know my truth. Other people can create ideas in their mind about me: positive or negative, but that does not change who I am. Once I embraced this truth, I stopped being a victim to others opinions and became strong in trusting myself.

*Learning I had responsibility and a say in my treatment.
-Pre-chronic illness, I was very naive about the medical world. That combined with what I hadn't learned in that I was chronically worried what others thought about me was a mine-field when it came dealing with doctors. Learning that my health care is my responsibility and that I need to be the head of my health care team changed how I approach doctors. I used to let the doctor tell me what he was going to do and then would leave confused. I was too scared to ask questions. Now. I don't let the doctor leave until he has finished answering questions and explaining what I don't understand.

* Being accused of being a drug-seeker
-There are very few chronic pain patients who have gone into the ER who have not been accused of being a drug-seeker. So many people abuse the system that the the person who is not a drug-seeker  is the exception rather than the rule. The second time I had been admitted to the ER four months into my chronic Migraines (and very uneducated about them-mind you), I had been guided by a concerned family member who was a RN to ask for a certain narcotic because I was in so much pain. My naive innocent 26 year old self was mortified when the ER doctor stormed out of the room and slammed the door. He called my neurologist who confirmed my condition and was much kinder and helpful when he returned.

But from that moment on, I realized that I had to approach doctors (and even pharmacists) in a different way). I have been in the ER many times (often not for Migraine, but since I come in with a Migraine they want to treat it). How I have dealt with ER doctors in the past is to say, "Please do not give me narcotics because that will only mask the pain. Toradol (an NSAID) has always helped me the most in the past." And I never get a raised eyebrow.

After my surgery in March, I had been told by my surgeon, after a phone call to him one night, to go to the ER immediately for stronger pain medication than he could prescribe over the phone. Even though my head had obviously been operated on, I knew I had to be proactive because I was going in and asking for strong narcotics. I explained to the ER doctor my situation and said, "I'd love it if you'd talk to my surgeon. His name is Dr. W and I have his number." The older doctor with a kind face smiled and gently said "That won't be necessary." And he gave me exactly what I needed.

I recently had a situation where my doctor had prescribed a narcotic but since I had filled it had told me to use it differently. When I called my pharmacy for a refill, the pharmacist refused to fill the prescription and told me "You've obviously taken more than prescribed." With his information, I had. He was very angry even though I explained the situation to him. Finally I said, "I would really love it if you would talk to my doctor."  The moment I said that, he seemed to calm down. My doctor office got it straightened out. But you can bet that it stung to have someone tell me I had abused a medication when I absolutely did not. It felt very cruel to have somone not beleive a word I said because so many other people have lied. I am paying for someone else's sins. The bottom line is that I learned that since there are people out there who do abuse medications, people like me have to be extra patient, understanding of the doctor/pharmacist's perspective and be proactive when it comes to these situations.

-This post was written as a part of National Health Blog Posting Month -30 health posts in 30 days.

Friday, November 4, 2011

Coping with the Funk

Aviva at Sick Momma is hosting PFAM this round which will be live on Nov 9th.
So what do you do to get yourself out of the doldrums when you fall into a funk? 

*I dance. Dancing=joy for me. If my Migraine is too bad, I don't actually get up and boogie, but I remember dances that bring me joy. And when I'm able, I will stand up and dance around by myself. This morning, I was quite overwhelmed and depressed. I was seated in bed talking to George; he took my hands in a dance pose, started rocking back and forth and sang the song we had done a choreographed dance to at our wedding. He did this because he knows it will make me smile. I've even danced with the dogs (with their eyes bugging out).

*I watch movies depending on my mood. My grandfather worked in the film industry, so movies of every genre and decade were part of my education. I find black and white movies from the 1920's-40's the most comforting (i.e "My Man Godfrey," "The Thin Man" series or "I Remember Mama"). Sometimes my mood calls for an upbeat lift-your-spirits-in-song movie like "Enchanted" or "Mama Mia". Other times, the dork in me is my comfort when I watch "Star Trek: The Next Generation". But, my fail-safe is the television series, "The Golden Girls". You cannot go wrong with Betty White.
*As my three dogs, Knightley, Zoe and Giselle are my constant companions, I usually turn to them when I'm in a funk. There is nothing like having a ten pound furry creature nestle herself into your chest when you need a hug. 

*Daily, I read devotionals from different perspectives: a catholic pastor that suffered from depression, Bread for the Journey by Henri Nouwen; a diverse group of chronically ill Christians with different illnesses, Mosaic Moments: Devotionals for the Chronically Ill by Lisa Copen; and a woman who became a quadriplegic at the age of seventeen after a diving accident, More Precious Than Silver by Joni Eareckson Tada. I find if I go a day without connecting to God through reading these, I sink deeper into my funk.

*Ironically the November 4th devotional from More Precious than Silver is entitled "Had Enough?" She quotes a verse from the bible where Elijah says "I've had enough Lord...take my life." (1 Kings 19:4) Ms. Tada went on:
The record shows that the Angel of the Lord agreed that "the journey is too much for you" (1 Kings 19:7) Then God presented Elijah with a new work to do. Sometimes switching focus onto others is just what the doctor would order. 
What she described is exactly what helps me when I'm in a funk: focusing on others. I often find that going to forums such as MyMigraineConnection, ChronicBabe and Rest Ministries Sunroom help me to connect with those who are going through troubles that I understand and may even be able to offer some support and hope. It is very uplifting to know that I can help someone else and it reminds me that I do have worth.   
How do you keep on keeping on when your pain is high and your fatigue is even higher?
 *'One moment at a time' is a very frequently used term in our community, but it is very true. Sometimes, I have to pull on an invisible rope to get me to the next second. And then I do the same for the following second. Practically speaking, I keep on going by setting up and keeping to a routine as much as I can. Evenings are the hardest for me because by the end of the day, I have used up my ability to cope with the day. But, if I have a routine that I follow, evenings are easier to get through. 
What (or who) inspires you and gives you hope?
Paul, a man who wrote many books of the new testament in the Bible, inspires me. He inspires me because he went through so much pain and hardship yet he kept on going. He said "..in Asia. We had great burdens there that were beyond our own strength. We even gave up the hope of living." (2 Corinthians 1:8b) Wow. I certainly can identify with Paul here. Later he writes "So we do not give up. Our physical body is becoming older and weaker, but our spirit inside us is made new every day." (2 Corinthians 4:16)

Sometimes the funk seems so big that I can't see to the other side.
I am going to take a note from Paul here and not give up.  

-This post was written as a part of NHBPM- 30 health posts in 30 days   http://info.wegohealth.com/NHBPM

Thursday, November 3, 2011

Dear 18 Year Old Kelly,

I know at 18 you would love to get a letter from your almost 32 year old self and see a bit of the blueprint of the next 14 years. You are so anxious to fly through college and to marry the boy you are dating. Time seems to be your enemy.

Celebrating my 18th Birthday at Purdue
Mom always says "The joy is in the journey." Yes, her mom-ism has grown on me. Try not to wish the time you have away. Things change so slowly that you don't notice it. And sometimes they change so fast that all of the sudden what you think you have is gone. Kinda like how Grandpa just passed away? Remember how you were walking in his house among all his things, expecting to hear his voice and feel his presence in the room, but he really wasn't there? It had all changed so quickly.

All you really have is today. If are you absorbed with what tomorrow may be like (i.e marriage), you will miss what is right in front of you. Appreciate what you have. I'll let you figure out what that is.

Your future husband told me to tell you to be patient. *smile* He should know about that; he waited a while for you.

Keep being driven and determined as those qualities will serve you well on the road ahead.

In reading your journal writings, I see how much you want to deepen your relationship with God. I see that you are seeking His will and purpose in your life. Keep praying and reading and asking questions.

You have a great sense of discernment. Trust your gut. It is your most treasured guide on your journey. When you sense something is "off" in a situation, follow that sense. And please listen to your body.

Kelly, you push yourself so hard. I know you feel pressure to live up to expectations of being the best person you can be. But it is okay to take care of yourself. Somehow you have translated these expectations into expectations of perfection. It is okay to make mistakes, to veer off course, to fail, and to disappoint those you love. Mistakes are a part of life.  Attempting to be perfect will only lead you to depression and anxiety.

Finally, you are enough just as you are. You do not need to try to be a superwoman. Just be you. And when you are yourself, you will be more content and more ready for what God has in store for you.

Love you,

P.S. Keep Dancing!

Ballroom Dancing Competion 1998
-This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

Wednesday, November 2, 2011

Candle of Hope

Some days, hope is hard to find, much less hold onto.

Research has not caught up with me yet Migraine-wise. With my Migraine disease treatment, we are going down a route that my specialist uses as a last resort. We're also tweaking other treatmetns that aren't really working, but are better than nothing.

Most of this year, my mantra has been: "I'm not going to be concerned about tomorrow because we'll figure it out then. There are no tomorrows. Only todays." Now, when I have frequent episodes where I am not finding relief, I find myself quite concerned. I need to have hope that tomorrow is going to be better.

It is not so simple to just "have hope/faith." People have said "have faith it will be okay." And I have lived through it not being okay so many times. And after so many times of seeing things not work out, it starts to wear on you.

A pastor of Mars Hill Bible Church, Rob Bell, once shared a story about a person who told him they were hopeless and he told that person, "I will hold onto hope for you until you can hold onto it yourself."

I have used this phrase with my friends and they have used it with me. "I will hold onto hope for you." Because the truth is that some days, no matter what people say, hope seems to slip through my fingers.

Recently, the hope that I'm going to find any type of treatment that will make my life more tolerable and more functional (i.e. do housework/cook meals) feels dim.

In conversing with those of you who comment on my blogs, I came up with the idea of buying a candle that says "hope" on it. What I got is actually a tea-light candle holder (no scent!).  I light a candle every day and it is a great visual for me. My parents just gave me a Willow Tree figurine called "Angel of Freedom" for my upcoming birthday. It is an angel holding up a butterfly and I have placed it next to the candle.
This candle reminds me that there is hope for my future. It also reminds me that someone is holding onto it for me when I cannot.

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J I rebelled and did not use today's prompt.

Tuesday, November 1, 2011

NHBPM- Potential Titles of My Future Book

It is National Health Blog Post Month and I'm taking the challenge!
Today's prompt: Titles of my future book. Say you’re writing a book about your life, community, condition, or Health Activism. Come up with 5 working titles and a quick book jacket synopsis. I'm changing it up a bit and writing 5 titles and a synopsis for each potential book.

In reality, I really want to write and publish a book. It is a dream of mine that I desperately want to fulfill. Here are a few random ideas off the top of my head that I just thought of today.

-"Choosing Life"  This would be a book about choices we make every day that can help or hinder how we live well with chronic illnesses.

-"Fly with Hope" Well this is a no-brainer title since I use it for my blog. It is a title that is very personal to me so it would have to be about my life and faith.  It would be about how I have fought with God, wrestle through my faith and the teachings of the bible, and how I got to a place of choosing a relationship with God despite the unanswered questions and anger.

-"Migraine Free" This would have to be a book about Migraine disease itself...not another book about the ins and outs of what it is. But, a book on why more research, activism and involvement is crucial to those of us who have Migraine disease. There is no cure, so none of us with the disease are ever "free" from it, but we can never stop fighting individually and collectively. This book would contain stories of Migraineurs at different levels of being affected by the disease.

-"Chronic Illness Meet the Internet" When I was headed off to college, an email address was something everyone was just starting to have. I never experienced an adult world without email or the internet. Wouldn't it be interesting to interview those who have had chronic illnesses before and after the internet age and see the pros and cons of how the internet has helped/hindered the lives of those with chronic illness.

I cannot think of a fifth right now. Looking forward to reading other people's ideas!

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J