Prayer unanswered?

I haven't blogged in a long time, not because I didn't have anything to say, but because this blog is supposed to focus on the positive things in my migraine life, and I didn't have anything positive to say. I've been in a pretty dark place for several months. I've been questioning my belief in prayer, and at times, whether God even cared about me. My prayers for many things, not just personal relief from the pain have gone unanswered. I wondered if God was even listening. I believe a lot of my doubt was my own doing: I rarely go to church and I hadn't picked up my bible in weeks.

This past week I've been staying at my local church camp, participating in both the family camp activities and helping the teen camp staff as much as I've been able. I've always loved the teen camp here and I wanted to be a part of that ministry so desperately. I'm seeing now that God has been very gracious to me this week, both in lessening the intensity of my pain and in allowing my head to respond well to the pain meds when I've needed them. I've had a great week, but I couldn't stop those same doubts that have been my constant companion these last few months from creeping in. I had a great conversation with my former youth pastor about what I was feeling, and I told him I felt like I was at a crossroads where I either let God restore my faith in prayer or I stopped praying altogether. He recommended a great book for me to read and the last three days I've been diving in to both that book and my bible.

I realized I missed my Abba Father immensely. Last night I came across Lamentations 3. This is a chapter I've read many times in the past, but it had new meaning for me.  Verses 22-24 state, "Because of the Lord's great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness. I say to myself, 'The Lord is my portion; therefore I will wait for him.'" I so desperately needed to be reminded that the Lord is compassionate toward me, and that when it feels like my prayers aren't being answered, I just need to wait for him.

My motto used to be "Life sucks, but at least it's short." My new motto comes from another book I recently read: "I'll be okay. God's carrying me." (Coming Home by Karen Kingsbury)

I found myself in Psalm 46 tonight and verse 1 hit me like a wave of reassurance and mercy. I like it best as it's written in The Message: "God is a safe place to hide, ready to help when we need him." You might more easily recognize this verse as it's written in the NLT: "God is our refuge and strength, always ready to help in times of trouble."

The book my pastor recommended is called God on Mute, by Pete Greig. In it is a short section titled Engaging the Silence. I'm going to copy it here as it is written and formatted:

First
There is
     Prayer
And where there is prayer
There may be
     Miracles
But where miracles may not be
There are
     Questions
And where there are questions
There may be
     Silence
But silence may be
More than
     Absence
Silence
May be presence
     Muted
Silence
May not be nothing, but
     Something
To explore
Defy accuse
     Engage
And
This is
     Prayer
And where there is prayer
There may yet be
     Miracles

Once Upon a Time

I remember well my first migraine. It was the summer between my sophomore and junior years of college. My best friend from high school was at my house and we were watching tv when a piercing pain shot through my head. After watching my mom suffer migraines for many years, I kind of figured that's what I had. I sent my friend home and went straight to bed.

I'm very fortunate that my migraines were very mild and infrequent during my time in college. Even for several years after college, my migraines were very manageable. It wasn't until this last couple years that they have become more severe and frequent. Before this last year, I went to the ER with a migraine maybe two or three times per year. Now I go about once a week.

I've learned a lot during these last couple of years. When I've been inpatient at the hospital in Chicago where my neurologists have a wing, I've been required to attend classes about migraines. I've learned what my food triggers are (aged cheese and caffeine) and I've learned how to be assertive without being aggressive about my pain. I've learned the most common food triggers and even if they don't trigger a migraine in me every time, I've started avoiding them. The most helpful "class" was a support group meeting. It was so nice to know there are other people that feel exactly like I do. Diamond Headache Clinic makes you really take advantage of every opportunity when they hospitalize you. As I've worked my way through different neurologists it's been frustrating, but I'm grateful for where I've landed.

On the Rebound

I just typed a whole post and it disappeared. I'll try again.

There's a condition Migraineurs can suffer called rebound headaches. They're also referred to as medication overuse headaches. They happen when someone takes too much pain medication, although they feel just like a regular migraine. The only way to get rid of a rebound headache is to stop taking all pain meds. It's brutal for a while, but eventually the pain goes away.

I'm currently rebounding. Sunday I decided to go off all my pain meds. Tuesday night I ended up in so much pain I couldn't take it anymore. I gave in. I took pain meds. The same thing happened last night. Now, instead of being five days post-medication, I'm only 11 hours. I don't regret taking the meds. I was in incredible pain. But it's frustrating that I keep giving in. I know I will eventually beat this rebound headache and go back to having regular migraines, but I sure wish that would happen soon.

The Intruder That Did My Laundry

Right now I'm on a med called DHE. It's used to break up a migraine cycle. I give myself a shot of DHE every 8 hours for 3 days with shots of pain meds in between. I always forget the side effects of DHE until I'm on it again. For one, the shots bruise me terribly, worse than any of my pain meds that are shots. Also, the DHE causes me to have super weird dreams. I just woke up from a short nap, and as I was trying to wake up, I became convinced someone had broken in. See, I knew my load in the dryer had already buzzed, but I was sure I heard the dryer running. Clearly someone had started it up again. And every creak was someone walking through the house. So I wondered if I should pretend to be sleeping (which I still sort of was) and hope the intruder left without hurting me, or should I force myself to wake up, grab my phone and keys and make a run for it? I forced myself awake enough to reach for my phone and became aware that the sound I thought was the dryer was the fans running downstairs (we had a minor flood and we're trying to dry out). Wow. What a dream. While the DHE is necessary for pain management, those side effects are something else.

Sound Sensitivities

Most migraineurs I know have a sensitivity to sound when they're suffering a migraine. Common sounds that bother me are a ticking clock or a tv in the next room. Not so common sounds that bother me come from the farm next door. Nothing can irritate a migraine like the sound of two roosters trying to out-crow each other, the donkey hee-hawing for all he's worth or the cows looking for mates. At least when God allowed me to suffer sound sensitivities he had a sense of humor about it.

My Heroes

I've read more than once that caregivers of those with chronic pain are the silent victims. I'm sure my family would never call themselves victims, but they sure are great caregivers. In the last couple of years I had to move back in with my parents, mostly for financial reasons. Since then my migraines have grown unbearable in frequency and intensity. At this point I don't know that I could live on my own. When I'm in bed or on the couch with a bad migraine, my mom is more than willing to fix me something to eat or reheat my rice filled heating pad or switch my ice packs (heat and cold both occasionally help the pain). My brother and dad chip in too. And all 3 have taken me on more ER runs than I can count. My brother gives up a day every six weeks to take me to Chicago for visits to my neurologist. My friends have also offered their help on many occasions. When I was headed to Chicago last October to be placed in the hospital there to break a migraine cycle, my best friend Jill put together a cute fall decorative basket and picture frame so I'd have something to decorate my hospital room. She's also driven to Chicago countless times, whether it was to visit me in the hospital or go with me to a doctor's appointment.

I am so blessed to have such a great family and friends!

Off to Chicago We Go

I saw my neurologist today for my regular checkup. I told her the preventative medication they put me on in July wasn't working, and that it was making my heart beat hard and fast all the time. She agreed I should come off that medicine, then said I had pretty much tried them all, with no luck, so they were running out of options for me. She said the next thing to try is Botox (Botox was approved last year by the FDA as a treatment for chronic Migraine). Now we get the process started by seeing if my insurance company will cover it. I should know in about 3-4 weeks. The same doctor that will be doing my Botox will also be consulting with me to see if a nerve block is a good option. I've had that done once before with medium results. That's where they knock me out and then inject something with a really long needle into the nerve in the back of my neck to block the pain receptors. I'm glad my doctor suggested these alternate therapies, because they were both on my list of questions to ask her anyway, and drug-wise, I'm pretty much out of options. Now I'm just praying my insurance company will cover these treatments and that I can have them soon.