Sunday, August 31, 2008

Invisible Illness Awareness Week: Sept 8-14, 2008

Keep your eyes peeled on September 8th! I will be blogging for Invisible Illness Awareness Week!

Sunday, August 3, 2008

July 29, 2008 Headache Specialist Visit

I saw my migraine/headache specialist on Tuesday, July 29th. I had a list of items I wanted to change in our management plan of my migraines. Overall it was a very quick visit, but extremely helpful visit.

I heart my migraine/headache specialist!

As a preventative medication for my migraines, I have been on Lyrica since January. While Lyrica seemed to decrease the number of migraines for a couple of months, in the last couple months, it did not sustain the decrease. In addition, I was having side effects of memory loss, word finding difficulties, increased appetite (insatiable) and weight gain. The memory loss has been affecting my daily life in that I could not remember what I do from day to day or sometimes what happened a few hours ago. Since going on the Lyrica I had gained 10 lbs and despite being on Weight Watchers (around 1000 calorie/day diet) and exercising 5 days/week, I was only able to maintain that weight not lose it.

So, a change was called for and Dr. Headache Specialist agreed. Now I am tapering off the Lyrica while tapering onto Zonegran. Zonegran is in the same class of medications as Lyrica, an anti-convulsant, so I am hoping to find some success with this.

As an abortive, I was trying Treximet, a combination of Imitrex (sumatriptan) and Aleve (naproxen). I was having mixed results with the Treximet with some uncomfortable side effects. So, the doc changed me to Zomig.

Overall, I am very optimistic about these changes. I am really glad I am stopping the Lyrica. And I am hopeful this new regimen will give me even more migraine-free days.

Although, so far, I have had a migraine every day since my specialist visit! Go figure!

Not Words, But Presence

There is probably a lot of psychology behind why we say what we say to people. Moreover, I am sure there is a lot of psychology behind why people say what they do when they hear we are suffering from migraines. I'm sure compassion often has something to do with it mixed in with wanting to say something helpful. But, alas, I am not a psychologist. I am just a migraineur who is given the pleasure of hearing these phrases, mottos, axioms, adages and proverbs whenever she ventures out into the world of the 'temporarily-abled'.

Some common ones I hear are as follows:

1. But, you look so good. (If I had a nickel for every time I heard this, I'd be a millionaire.)
2. Let go and let God.
3. This too shall pass.

Each of these make me cringe for a different reason. Although I am known for my wordiness, I will keep my rebuttal short for now.

1. I have an invisible disease.
2. I keep trying to let go, but they keep returning.
3. Yes, and then it shall come again.

When I have heard these sayings, I have trained myself to become glazed over and thank the person for their slap in the um I mean kind words.

I do, however, want to address the following phrases.
Everything happens for a reason.
5. God won't give you more than you can handle.

Not being the psychologist that I am not, I believe that people often find these sayings to be helpful in their own difficult times. Therefore, they relay their consolation to others hoping to share the reassurance they have found themselves.

As a migraineur, it is quite obvious why hearing "everything happens for a reason" is not top on my comfort list. The severe pain I frequently experience is quite unforgiving and each migraine can be hell; not to mention, I suffer from daily pain as well. With that, I would not find solace nor could I ever believe that my pain is for a reason. Through my journey through migraines and New Daily Persistent Headache, I have learned much, gained much, and drawn closer to my husband in direct result of having the pain. (See my previous entry Gift of Pain for expansion on this.) However, I do not believe that the migraine disease or NDPH were the only possible means to that end. Nor were my gained knowledge, spiritual growth and closeness to my husband reasons for my pain. God could have and would have brought me to this place through whatever happened in my life. I do not believe it was part of God's plans for my life to give me migraines or NDPH. The knowledge, growth and closeness were happy occurrences that happened as I lived through the pain. But, shall I also list what I have lost because of my pain? My job, my independence, my ability to serve in a way that brings me joy, my friendships and other nameless things that can only be understood by someone in my shoes. The list is some days not comprehendible to me. Do I believe that God can take bad circumstances and turn them for good? Yes. (Romans 8:28) Do I believe that God has a plan for my life? Yes. (Jeremiah 29:11-13) There are many things I do not understand about God and how He works and my pain and why He does not take it away. But what I do know for sure is that there is no reason for my pain. It just is.

The other phrase that I actually hear quite often is "God won't give you more than you can handle." As a disclaimer, I am not a bible scholar. I am just a Christ-follower trying to find her way. So, please take my words for what they are, just my opinion. I believe people take this phrase from the following verse in the Bible: 1 Corinthians 10:13 which says, "The only temptation that has come to you is that which everyone has. But, you can trust God who will not permit you to be tempted more than you can stand. But when you are tempted, he will also give you a way to escape so you will be able to stand it ". Often, we Christians take verses out of the context in which they were written, paying sole attention to what we want the verse to mean and forgetting what the verse was written about. Plain and simple, this verse was written in the context of temptation, not suffering. In addition to debunking this saying via scripture, my experience has proven this statement false. I have gone through more than I can handle physically and emotionally and God has allowed it. My pain and suffering has been beyond words, beyond tears, beyond screams, and beyond understanding how a loving God could allow me to suffer so much. And, yet, I have.

I do not find comfort in sayings. I find comfort in presence. Sometimes presence is in words that are meant well. But most often it is in the silent presence of a loved one who is simply with me in the pain.

I do not understand, nor will I ever pretend to understand why a loving God allows such suffering. But, I do know for certain that God has promised to be with me even when I am not aware of his presence.

"Where can I go from your Spirit? Where can I run from you? If I go up to the heavens, you are there. If I lie down in the grave, you are there. If I rise with the sun in the east and settle in the west beyond the sea, even there you would guide me. With your right hand you would hold me." Psalm 139: 7-10

In that, I find comfort.