Wednesday, January 21, 2009

Do Ever Have One of Those Days?

Do you ever have one of those days where you look around and you cannot believe this is your life?

I am having one of those days...

I am *so* thankful for many things in my life, my husband, my house, my sense of security, my loving family, my forum buddies, my dog...

But, I am *so* angry and *so* frustrated and *so* deeply saddened to my c
ore about how Migraine disease and New Daily Persistent Headache and neck pain and Fibromyalgia are affecting my life right now.

It is just one of those days.

Monday, January 12, 2009

Coping With Suffering: January 2009 Headache & Migraine Disease Blog Carnival Posted

The January Edition of The Headache & Migraine Disease Blog Carnival is up at Somebody Heal Me by Diana Lee.

Please check out this month's topic of "What Keeps You Going When You are Suffering."

Generally speaking, a blog carnival is a collection of links to a variety of a blogs on a central topic. The Headache & Migraine Disease Blog Carnival has been created to provide both headache and migraine disease patients and people who blog about headache disorders with unique opportunities to share ideas on topics of particular interest and importance to us. Visit the link to this month's carnival for a collection of informative entries on the theme of What Keeps You Going When You're Suffering.

Saturday, January 10, 2009

Fly With Hope

In the months between my second hospitalization for Migraine in February 2006 and my wedding in July 2006, I changed email providers and had to choose a new email prefix. Big decision, I know. ;) It used to be "HopeinGod". But that prefix was already taken with my new email provider and I had to choose something different.

I probably should have been putting my energy into planning the wedding, but stopping and thinking about my new email "prefix" became important. I thought about who I was at that moment and what I most wanted. I wanted to fly. I wanted to soar. Flying meant freedom. Freedom from anything that was holding me back. Freedom from pain and nausea and dizziness and side effects of medication. Freedom from anxiety and panic attacks. Freedom from disappointment. Freedom from failure. Freedom to go, to do, to be. No limitations. No boundaries.

The daily unrelenting pain that had begun in October 2005 was still fresh and new to me. I had never known pain like this before. Instead of going about my life with enjoyment, I was in a whole new world of figuring out how just to make it through the day. I had a new set of limitations. I was not working and although somehow the wedding planning was getting done, I could not imagine being able to walk down the aisle to marry the nerd :) of my dreams. My fight was day to day, moment to moment to keep getting through the symptoms that go along with Migraine and to keep holding on to the hope that tomorrow would be a better day.

What got me through the hospitalizations? What gets me through all of the long hours and minutes and days of excruciating pain, and through facing situations that I am not strong enough to endure? What gives me motivation? What gives me encouragement? What tells me that when it looks like all is lost, it really isn't? What gets me through suffering when it is down to me alone without a computer, without my husband, without my friends or family or forum buddies? What gets me through when it is me versus the darkness?

My faith. It is a faith that I have questioned. It is a faith that I have struggled through. It is a faith that has challenged me. It is a faith that I have almost given up on. It has been a faith that has brought me to my knees in tears and to hoarseness in anger. It is a faith that I sometimes do not understand. It is a faith I have wrestled with.

My faith in God, in Jesus, tells me there is hope. I have sat alone on the floor of my kitchen screaming through tears at God. Where are You? Why have You left me like this? Why don't You heal me? Why do You let me suffer?

According to Hebrews 11:1 in the bible, "Faith is being sure of what you hope for and certain of what you cannot see." It is a definition of faith that pushes the boundaries of how I understand God and His connection to my suffering.

Hope. At times I have questioned that too. At times, with a worn down body and a worn out spirit, I have yelled at my husband, "THERE IS NO HOPE! WHY DO WE KEEP TRYING?! I AM DONE." At times, in my despair, all I can see of my life is that I am nothing. I lay in my bed. I am totally dependent. Not contributing. Stagnant. No purpose but to endure. Daily pain. Suffering.

"There is surely a future hope for you, and your hope will not be cut off." Psalm 23:18

My well of hope for myself has often run dry and I have had to dip into the hope of others: the hope of my husband, my family, my friends, and my forum family. I have been sustained by their hope for me when I had none left.

Fly with hope. This is the email "prefix" I chose. I am still figuring out what it means for me. I am not free from my suffering when I have hope, but it definitely gives me a sense of freedom from the despair that suffering can bring. Hope keeps me going and gets me through.

"Those who put their hope in the Lord will renew their strength.
They will soar on the wings of eagles.
They will run and not grow weary.
They will walk and not be faint." Isaiah 40:31

Wednesday, January 7, 2009

Learning From My Mistakes

I have made a lot of mistakes along the way in learning how to be a good patient. And one of the most important things I've discovered is how essential it is to be an educated patient. I think we can all learn from each others mistakes. So, I'm going to share some of mine with you in hopes that you gain something from them.

The first time I was hospitalized for Migraine was November 2, 2005. My primary care doctor admitted me to a local hospital and referred me to a neurologist who performed all kinds of tests: CT scan of head/neck, CT scan of sinuses, MRI of head/neck, lumbar puncture, EEG. You name it, I had it done to me. I was discharged after four days even though the only thing that had changed since I had been admitted was that I had gone from eating nothing to starting to eat crackers and applesauce.

Lesson #1 Hospitals are not a cure.

This experience was my first wake-up call that hospitals are not the end-all, be-all for care. I don't know about other diseases, but I certainly believe this to be true for Migraines. Before that hospital stay, I had the belief that if I went to a hospital, "they" figured out what was wrong, "they" did something about it, and when I went home it was because "they" had gotten me better. What I have since learned that it is the communication and work that I do with my specialist that can further better management of my condition. Hospitals can be a tool, but not a fix.

After being discharged November 5, 2005, I was bed bound for all of November and part of December. The neurologist had at first diagnosed me as having some sort of inner ear vestibular balance disorder because of all the dizziness I was having. So, for weeks, I thought that is what I had. It wasn't till a few months later I saw him write "Migraine" on a form for my FMLA even though we had never discussed it.

Lesson #2 Ask questions. Ask lots of questions.

Even though he had diagnosed me as having a balance disorder, this neurologist was prescribing me medications for the head pain I was having. I guess he thought the two were related or perhaps he had "Migraine" in the back of his head. If he did, he did not discuss it with me. The medications he prescribed are ones that I now know can cause Medication Overuse Headache. If this neurologist knew of the potential harm the medications could cause me, he did not alert me to it.

For five weeks, I took Toradol four times a day, daily, as prescribed. This medication can have severe side effects if over-used. According to prescribing information, "Toradol is intended for short-term use only, usually up to five days. Larger doses or longer treatment may not provide increased pain relief and may increase risk of serious side effects." Mostly, I wish that I had not blindly taken medication without educating myself about it.

Lesson #3 Know what you are putting into your body.

When I started to have stomach pain that ended up being Toradol-related, this neurologist stopped the Toradol and changed me to Esgic Plus (a barbiturate with acetaminophen) to be taken four times a day, daily. I had severe pain. I trusted that the neurologist knew best, so I took it. I still have a prescription from my last visit with him that he wrote for 100 pills of Esgic Plus that I never filled. Months later, we found out from another doctor that my liver enzymes were dangerously high. I should never have been taking acetaminophen so often for so long. Shame on my neurologist for not warning me of this. But, even more so, shame on me for not educating myself on the potential side-effects of the medication.

Lesson #4 Get a second opinion...always!

Despite a daily headache, I went back to work in January 2006 taking Esgic Plus daily as prescribed. As any medication that is not intended to be prescribed daily, it quickly became ineffective and I experienced increasing pain not to mention horrible side-effects. I often called this neurologist about the side effects and pain. In hindsight, I realize that he treated me more as a pebble in his shoe that would not go away, than a patient that needed urgent treatment.

Lesson #5 Don't trust that your physician has your best interest in mind. Trust between a patient and a physician is earned and worked at being kept.

Toradol and Esgic Plus were not the only meds this neurologist tried with me. He had me try Midrin, and a couple triptans including Reglan and Axert. None were effective. But, knowing what I know now about Medication Overuse Headache, I understand that nothing was going to be effective until I stopped taking the offending medications.

Lesson #6 You know your body better than anyone else. Trust your gut.

Starting in late December 2005, this neurologist started me on a tricyclic anti-depressant for pain. When I became severely anxious and suicidal, he prescribed higher doses. When I called him concerned that my pain was not responding and my anxiety was getting worse, he added another anti-depressant, an SSRI. Towards the end of January 2006, my then-fiance showed up at my work-place during the work day (!) and took me to a psychiatrist appointment he had not told me he had scheduled for me because he was so concerned. The psychiatrist determined the anti-depressants were the cause of my anxiety and suicide attempts. Once the medications were out of my system, the anxiety disappeared as well as the suicidal thoughts and attempts. The neurologist was out of the country during those weeks so he was not consulted.

February 8th, 2006 was the last day I worked. I had talked to my neurologist on the phone from my office at work that day. I was having severe cramps that I felt was a side-effect from one of the medications. I was also in an incredible amount of head pain. It was so bad that before my last meeting of the day, I was laying down on the fetal position on the floor. He told me to discontinue the Esgic Plus and that we would start over with something else when I saw him at my next appointment the next week. That night, my then-fiance took me to the emergency room. The ER doctor prescribed Percocet. Didn't work. I went back to the ER two days later and was prescribed more Percocet. I took it every day, multiple times a day, for a week. Did I know this medication would also cause Medication Overuse Headache? No.

Lesson # 7 Do your own research! If you do not fight for yourself, who will?

On February 14th, 2006, I went to see this neurologist again. I was in the worst state I had been up to that point. When my then-fiance asked the neurologist what he thought was causing my pain. The neurologist said I must be depressed.

Lesson #8 "Fire his sorry butt." (I'm borrowing this quote from the lovely people I converse with at MyMigraineConnection, especially Nancy Bonk, who I have heard say this many times. She along with many others helped me become more empowered about making myself an important part of my health care team.)

At that point it was obvious, and I finally realized I needed to get a second opinion. So, I fired neurologist #1's sorry butt. On February 17th, 2006, I saw a headache specialist for the first time and everything changed. Well, by everything, I mean, for the first time, someone identified what I had, gave it a name, explained it to me and most importantly gave me hope.