Shout for joy, O heavens! And rejoice, O earth! Break forth into joyful shouting, O mountains! For the Lord has comforted His people and will have compassion on His afflicted. But Zion said, "The Lord has forsaken me, And the Lord has forgotten me." "Can a woman forget her nursing child And have no compassion on the son of her womb? Even these may forget, but I will not forget you. Behold, I have inscribed you on the palms of My hands; Your walls are continually before Me." Isaiah 49:13-16
The angel of the Lord encamps around those who fear Him, And rescues them. Psalm 34:7
I will cry to God Most High, to God who accomplishes all things for me. Psalm 57:2
Wait for the Lord; Be strong and let your heart take courage; Yes, wait for the Lord. Psalm 27:14
Wednesday, June 22, 2011
Monday, June 13, 2011
I love interns!
We have doubled our task force at BigHouse this summer by adding 3 wonderfully talented interns. They are AMAZING! These lovely ladies are planning our day camps, running the preschool program, and keeping the embroidering machines humming (hoping to be done with all of our towels by the end of the week!!). And they do a little humming themselves...or rather, singing. Today I'm not sure what all tunes we heard coming from the sweatshop, but I know "I've Got the Joy, Joy, Joy, Joy Down in My Heart" was one of them! They are a delight. They are getting a real-life look at what it takes to run a non-profit ministry and we are getting the benefit of their talents and education. It's a win-win. We are blessed to have them working alongside us for these few short summer weeks.
Last Wednesday we had our first day of the summer preschool program. The kiddos had a blast in Kindermusik, art, and especially water play time in the backyard. I'm not gonna lie...the kiddie pools we bought look pretty fun to me too. They looked SO CUTE in their new swimsuits and they loved their towels with their names embroidered on them. We also had our first night of Kids' Choir. We had quite a good turn-out - I was a little nervous since we had a pop-up storm just before it was time for them to get there. (Also, my headache and storms are apparently mortal enemies.) They are fast learners and seemed to have a good time. Next week is our first week-long day camp - Science Adventure theme. I'm SO excited about camp!
Last Wednesday we had our first day of the summer preschool program. The kiddos had a blast in Kindermusik, art, and especially water play time in the backyard. I'm not gonna lie...the kiddie pools we bought look pretty fun to me too. They looked SO CUTE in their new swimsuits and they loved their towels with their names embroidered on them. We also had our first night of Kids' Choir. We had quite a good turn-out - I was a little nervous since we had a pop-up storm just before it was time for them to get there. (Also, my headache and storms are apparently mortal enemies.) They are fast learners and seemed to have a good time. Next week is our first week-long day camp - Science Adventure theme. I'm SO excited about camp!
Wednesday, June 8, 2011
Relief!
I realize that my ban against headaches taking over my blog is mainly for me and not for you. It's a small way I try to preserve my sanity. So let me try to catch you up on my headache stuff:
At the end of April I saw my new neurologist, Dr. Greene, in Montgomery. He started me on a medicine called Vimpat (developed for seizures - in case you didn't know, there are ZERO drugs developed for NDPH, and really there aren't very many developed for migraine - they just figure out that some drugs deveoloped for seizures or depression or high blood pressure have positive effects on migraine symptoms. And sometimes those things that work for migraines work for NDPH too, but it's much more hit-or-miss.) During the month of May I had a lot more red days. Red days are when the pain gets to an 8 or above on a scale of 1-10. I had 17 red days in May (compared to 7 in April - my baseline month). At the end of May I got into a bad pattern of unrelenting red days and called Dr. Greene who decided to taper me off of Vimpat and try another round of steroids (which worked to break the pain cycle back in March).
Unfortunately this time, the steroids didn't help. Monday night was the breaking point - I went to bed at 11PM, woke up around 12:30AM from a pain nightmare. I've had dreams about headaches before, which has led me to assume that I have pain 24/7, although most of the time it doesn't interrupt my sleep. This was different - this was pain bad enough to not only infiltrate my dream, but wake me from sleep. I was awake from 12:30 - 4AM, unable to go back to sleep b/c of pain. It has to be one of the loneliest feelings in the world - being wide awake while everyone else is asleep. I felt slightly jealous of the general population! In those three and a half hours I prayed and cried and looked up IV treatment protocols. I finally went back to sleep from 4:00-5:45AM, but again had a pain nightmare.
Needless to say I couldn't work yesterday. I called Dr. Greene's office. He wanted to call in DHE injections for me - the problem was my dr's office in town didn't want to teach me how to do the injections on myself since it was a different doctor prescribing the medicine. So I drove to Montgomery (an hour away) to pick up the supplies from the hospital pharmacy and get a short nursing school lesson in drawing up the medicine and doing the shots.
I feel like going from oral medication to injected medication is a big step! Maybe not. But the GREAT news is - it worked! The nurse warned me that it might take a couple to get any relief, but I guess I finally got lucky for once. The phenergan shot that went along with it made me ultra drowsy, but it was worth it to knock my pain down from a 9 to a 2!
I have nine rounds left to take as needed - but there's no guarantee that it will work again. That's one frustrating thing about it - not knowing if something will work and for how long.
In other news, I'm participating in a research study at UA for chronic headache sufferers. I'll be part of a group that will learn mindfulness meditation, yoga, and stress management techniques to help with pain management. I'm VERY excited about this! I'll be driving to Tuscaloosa for the sessions each week for a total of 8 weeks. I'm really hoping to build an effective base of coping skills. I'll let you know how it goes.
At the end of April I saw my new neurologist, Dr. Greene, in Montgomery. He started me on a medicine called Vimpat (developed for seizures - in case you didn't know, there are ZERO drugs developed for NDPH, and really there aren't very many developed for migraine - they just figure out that some drugs deveoloped for seizures or depression or high blood pressure have positive effects on migraine symptoms. And sometimes those things that work for migraines work for NDPH too, but it's much more hit-or-miss.) During the month of May I had a lot more red days. Red days are when the pain gets to an 8 or above on a scale of 1-10. I had 17 red days in May (compared to 7 in April - my baseline month). At the end of May I got into a bad pattern of unrelenting red days and called Dr. Greene who decided to taper me off of Vimpat and try another round of steroids (which worked to break the pain cycle back in March).
Unfortunately this time, the steroids didn't help. Monday night was the breaking point - I went to bed at 11PM, woke up around 12:30AM from a pain nightmare. I've had dreams about headaches before, which has led me to assume that I have pain 24/7, although most of the time it doesn't interrupt my sleep. This was different - this was pain bad enough to not only infiltrate my dream, but wake me from sleep. I was awake from 12:30 - 4AM, unable to go back to sleep b/c of pain. It has to be one of the loneliest feelings in the world - being wide awake while everyone else is asleep. I felt slightly jealous of the general population! In those three and a half hours I prayed and cried and looked up IV treatment protocols. I finally went back to sleep from 4:00-5:45AM, but again had a pain nightmare.
Needless to say I couldn't work yesterday. I called Dr. Greene's office. He wanted to call in DHE injections for me - the problem was my dr's office in town didn't want to teach me how to do the injections on myself since it was a different doctor prescribing the medicine. So I drove to Montgomery (an hour away) to pick up the supplies from the hospital pharmacy and get a short nursing school lesson in drawing up the medicine and doing the shots.
I feel like going from oral medication to injected medication is a big step! Maybe not. But the GREAT news is - it worked! The nurse warned me that it might take a couple to get any relief, but I guess I finally got lucky for once. The phenergan shot that went along with it made me ultra drowsy, but it was worth it to knock my pain down from a 9 to a 2!
I have nine rounds left to take as needed - but there's no guarantee that it will work again. That's one frustrating thing about it - not knowing if something will work and for how long.
In other news, I'm participating in a research study at UA for chronic headache sufferers. I'll be part of a group that will learn mindfulness meditation, yoga, and stress management techniques to help with pain management. I'm VERY excited about this! I'll be driving to Tuscaloosa for the sessions each week for a total of 8 weeks. I'm really hoping to build an effective base of coping skills. I'll let you know how it goes.
Monday, June 6, 2011
This is why I don't make plans
The original plan for the weekend was to spend Thursday night with Heather in Tuscaloosa, meet with the research coordinator at UA from 8-10AM on Friday, then drive to Nashville for a dentist appointment at 3PM, attend my cousin's wedding in Fairview at 4PM on Saturday, and drive back to Opelika on Sunday. Oh and due to 11 straight red days, my neurologist decided that I should taper off the medicine I've been taking for the past month (Vimpat) and also take another round of steroids. So I was excited about the prospect of pain-free days like I had in March while taking steroids.
Thursday - when I was about 45 minutes outside of Tuscaloosa, my mom called and told me that the wedding had been postponed due to my cousin's fiance (who is in the Navy and stationed in FL) becoming very sick and not allowed to drive home. At that point I still intended to come home b/c I had the dentist appointment, after all. In the next 45 minutes I decided that I would cancel my appt, drive back to Montgomery with Heather (who is gradually moving her belongings to her fiance's apartment there) on Friday afternoon, then take her with me to Opelika, spend the night and go to Six Flags on Saturday. (I've been wary about the effects of Six Flags on my head - stress/adrenaline/sun/noise/erratic behavior are all not friends of my headache, but with steroids, it seemed possible). So when I got to Heather's I told her my great plan, which was all fine except that she and Adam already had weekend plans so she couldn't do Six Flags. At which point I texted my go-to girls: Katie and Jess. Katie also had plans, but Jess was in. Great!
Friday - I drove to campus for my 8:00 mtg. Incidentally, Hackberry is being completely torn up so there was all kind of crazy detours and I ended up parking by Wesley and walking a couple blocks. No big deal. The research study is for chronic headache sufferers - they're studying the effects of meditation/yoga/stress management techniques on chronic head pain. I'm SO EXCITED. More about that later.
I called to cancel my dentist appt. on my way back to Heather's apartment and we loaded up my car with more of her stuff and hit the road to Montgomery. I should mention that A/C in my car is out and it's been smoking hot all weekend. We got there around 2 and I got to take my mandatory nap while she unloaded the cars. (Bless you, Heather.) At some point we realized that I left my pillow and elephant in Tuscaloosa. HEARTBREAK! The good news is that Heather has an identical elephant who is my current replacement until the real one can be retrieved.
At 3:00 my brother Hayden texted to me to tell me that the wedding was back on. Oh my. So I briefly wrestled with the moral dilemma of my cousin's wedding vs Six Flags. God told me to suck it up and go home for the wedding, so I did. I decided to wait a bit for the rush hour traffic and blazing sun to calm down a bit. Then I headed back North on I-65 toward Fairview.
Meanwhile my long-lost friend Tyler was heading South toward Birmingham (also for a wedding). We talk quite a bit but haven't seen each other in a few years. We'd been talking during the afternoon and it became apparent that we would be crossing paths on the interstate - so at 9:30 PM we met up at a truck stop near Columbia, TN for about 20 min. HA! It was great. I finally got home at 10:30.
Saturday - I expected to wake up feeling AMAZING due to steroids. Well, it was way better than I had been - 1/10 pain instead of 8/10. So I enjoyed my Quiet Time and memorized Scripture but it was back up to 5/10 in a couple of hours. Disappointing. Went to the wedding at 3:30 and left the reception at 8:30. I enjoyed hanging out with my family. Saturday night I didn't sleep very well b/c my pain was up to 8 and I was very frustrated/disappointed in the steroids.
Sunday - Went to church, went out to eat. OH - I "planned" to get two big cups of Juicy Peach tea at the truck stop where I miraculously found it on my last trip home. Unfortunately, this was Juicy Peach GREEN tea which is not only the wrong color, it doesn't even taste good. The real Juicy Peach is only in GA it appears. Sad day. Came home, took a 20 minute nap but woke up with my head feeling crushed - yep, STORM out of nowhere! So I was miserable for the next few hours with 8/10 pain, plus feeling very stressed about driving, needing to be back at BH in the morning, and still mad about the failed steroids. I finally left for AL at 5:30PM. The drive was uneventful despite the fact that I felt like I was fighting a battle physically, emotionally, and spiritually all the way home. Pain is very difficult to deal with sometimes, as you can imagine. Praise the Lord I made it home at 10:30 without any problems!
Today - BigHouse interns start today!!! I'm so excited! I need to go get ready and get on over there so I can make sure we have all our ducks in a row. Sorry this has been the longest post ever. I'll come back with an update about the research study and headache stuff later - I'm hoping once I'm off everything (by the end of the week) my pain will be a lot more manageable. We shall see.
Thursday - when I was about 45 minutes outside of Tuscaloosa, my mom called and told me that the wedding had been postponed due to my cousin's fiance (who is in the Navy and stationed in FL) becoming very sick and not allowed to drive home. At that point I still intended to come home b/c I had the dentist appointment, after all. In the next 45 minutes I decided that I would cancel my appt, drive back to Montgomery with Heather (who is gradually moving her belongings to her fiance's apartment there) on Friday afternoon, then take her with me to Opelika, spend the night and go to Six Flags on Saturday. (I've been wary about the effects of Six Flags on my head - stress/adrenaline/sun/noise/erratic behavior are all not friends of my headache, but with steroids, it seemed possible). So when I got to Heather's I told her my great plan, which was all fine except that she and Adam already had weekend plans so she couldn't do Six Flags. At which point I texted my go-to girls: Katie and Jess. Katie also had plans, but Jess was in. Great!
Friday - I drove to campus for my 8:00 mtg. Incidentally, Hackberry is being completely torn up so there was all kind of crazy detours and I ended up parking by Wesley and walking a couple blocks. No big deal. The research study is for chronic headache sufferers - they're studying the effects of meditation/yoga/stress management techniques on chronic head pain. I'm SO EXCITED. More about that later.
I called to cancel my dentist appt. on my way back to Heather's apartment and we loaded up my car with more of her stuff and hit the road to Montgomery. I should mention that A/C in my car is out and it's been smoking hot all weekend. We got there around 2 and I got to take my mandatory nap while she unloaded the cars. (Bless you, Heather.) At some point we realized that I left my pillow and elephant in Tuscaloosa. HEARTBREAK! The good news is that Heather has an identical elephant who is my current replacement until the real one can be retrieved.
At 3:00 my brother Hayden texted to me to tell me that the wedding was back on. Oh my. So I briefly wrestled with the moral dilemma of my cousin's wedding vs Six Flags. God told me to suck it up and go home for the wedding, so I did. I decided to wait a bit for the rush hour traffic and blazing sun to calm down a bit. Then I headed back North on I-65 toward Fairview.
Meanwhile my long-lost friend Tyler was heading South toward Birmingham (also for a wedding). We talk quite a bit but haven't seen each other in a few years. We'd been talking during the afternoon and it became apparent that we would be crossing paths on the interstate - so at 9:30 PM we met up at a truck stop near Columbia, TN for about 20 min. HA! It was great. I finally got home at 10:30.
Saturday - I expected to wake up feeling AMAZING due to steroids. Well, it was way better than I had been - 1/10 pain instead of 8/10. So I enjoyed my Quiet Time and memorized Scripture but it was back up to 5/10 in a couple of hours. Disappointing. Went to the wedding at 3:30 and left the reception at 8:30. I enjoyed hanging out with my family. Saturday night I didn't sleep very well b/c my pain was up to 8 and I was very frustrated/disappointed in the steroids.
Sunday - Went to church, went out to eat. OH - I "planned" to get two big cups of Juicy Peach tea at the truck stop where I miraculously found it on my last trip home. Unfortunately, this was Juicy Peach GREEN tea which is not only the wrong color, it doesn't even taste good. The real Juicy Peach is only in GA it appears. Sad day. Came home, took a 20 minute nap but woke up with my head feeling crushed - yep, STORM out of nowhere! So I was miserable for the next few hours with 8/10 pain, plus feeling very stressed about driving, needing to be back at BH in the morning, and still mad about the failed steroids. I finally left for AL at 5:30PM. The drive was uneventful despite the fact that I felt like I was fighting a battle physically, emotionally, and spiritually all the way home. Pain is very difficult to deal with sometimes, as you can imagine. Praise the Lord I made it home at 10:30 without any problems!
Today - BigHouse interns start today!!! I'm so excited! I need to go get ready and get on over there so I can make sure we have all our ducks in a row. Sorry this has been the longest post ever. I'll come back with an update about the research study and headache stuff later - I'm hoping once I'm off everything (by the end of the week) my pain will be a lot more manageable. We shall see.
Thursday, May 26, 2011
Caffeine vs. Melatonin
A little explanation of the title - pain's been keeping me awake lately. This is my fourth straight red day. A record. Well, ok - a recent record. We won't count the three months before I had a diagnosis and kept a pain diary. Back to the title - I've been using sleeping pills on occasion to help me fall asleep on bad pain days, but the last few times they've actually been keeping me awake with a crawl-out-of-your-skin restless feeling. So that's no longer an option. My doctor in Nashville suggested melatonin instead, so I picked that up today. Problem was I also picked up a big Cherry Coke at Sam's and have been sipping on it all evening. Mistake. I don't drink a lot of caffeine but it certainly does its job on me. So, great...now I've got conflicting forces at work in my brain. So I'm blogging about headaches again at 11:30 at night.
So while we're on the subject, can I just say that I hate the idea of the "new normal". It's all over the place on the NDPH support group site. Here's some facts about the "new normal" - the pain never goes away; you have to learn new limits to what you can and can't do; you have to realize that none of your friends and family members can relate to this weird diagnosis and that can be overwhelming at times (for you and them); you have to give up things you love (clogging, Six Flags...); you have to try lots of different meds and go to lots of doctors; you have to fight the feelings of being a failure; you have to try not to worry about the future; you have to admit that you're not as big and brave as you once were; you have to admit that you're not even the same person you once were; you have to really trust God a whole lot every minute of the day; you have to set a good example for others in your attitude and actions; you have to make the best of what you have and not be bitter about the things that gotten stolen from you; you have to be strong even when you don't feel like it; you have to be thankful that it's not worse than it is; you have to stay calm and not panic.
I really liked the old normal. Except that I prayed for this. I asked for hardship to prove my faith and make me more like Jesus. And I'm SO THANKFUL that God answered those prayers. I've learned so much in the past five months. More than I ever could have without pain. Thank you, Lord for knowing what's best for me. Thank you for giving me an opportunity to grow. Thank you for providing for me and never leaving me. So don't ever shy away from things that are hard. Grit your teeth, dig deep, cling to Jesus and let Him carry you through the red days. It's going to be worth it, He promises.
So while we're on the subject, can I just say that I hate the idea of the "new normal". It's all over the place on the NDPH support group site. Here's some facts about the "new normal" - the pain never goes away; you have to learn new limits to what you can and can't do; you have to realize that none of your friends and family members can relate to this weird diagnosis and that can be overwhelming at times (for you and them); you have to give up things you love (clogging, Six Flags...); you have to try lots of different meds and go to lots of doctors; you have to fight the feelings of being a failure; you have to try not to worry about the future; you have to admit that you're not as big and brave as you once were; you have to admit that you're not even the same person you once were; you have to really trust God a whole lot every minute of the day; you have to set a good example for others in your attitude and actions; you have to make the best of what you have and not be bitter about the things that gotten stolen from you; you have to be strong even when you don't feel like it; you have to be thankful that it's not worse than it is; you have to stay calm and not panic.
I really liked the old normal. Except that I prayed for this. I asked for hardship to prove my faith and make me more like Jesus. And I'm SO THANKFUL that God answered those prayers. I've learned so much in the past five months. More than I ever could have without pain. Thank you, Lord for knowing what's best for me. Thank you for giving me an opportunity to grow. Thank you for providing for me and never leaving me. So don't ever shy away from things that are hard. Grit your teeth, dig deep, cling to Jesus and let Him carry you through the red days. It's going to be worth it, He promises.
Tuesday, May 24, 2011
You know it's a Red Day when...
...I wake up wanting to go back to sleep to escape pain.
...I'm lying on my bed in some contorted position with my hands over my eyes.
...I feel like there's a 100 lb football helmet glued to my head. Sometimes it's on fire.
...I can't raise my eyebrows b/c my forehead feels heavy and tight.
...I want to lie down but at the same time want my head suspended by something b/c anything touching it hurts worse.
...I'm thinking of crazy things that might make me feel better (floating in a sensory deprivation tank).
...I want to be little again so someone will pick me up and hold me and let me cry. You can't do this without looking ridiculous as an adult.
...I'm thinking of Red Day Redemption - something that will make me feel slightly better for even a short amount of time (my list so far includes Oreos and milk, walk at the park, eating a huge and delicious brownie at O'Charley's for lunch with Granny, talking to friends, going out for sushi, watching a movie and eating popcorn in bed...the list continues).
...I'm not feeling very big and brave.
...I'm trying to remember what my head felt like before headaches.
...naps don't hit the "reset" button in my head like they do on better days.
...I start going over the collection of meds I still have in my bathroom and get angry that nothing helps (and now I can't use the sleeping pills either).
...everything takes too much effort.
...I can't work at BigHouse (yes, that's a very good sign that it's a very bad day).
...I let headache thoughts infiltrate my real blog b/c I've already posted something in my headache blog today. :(
That's how you know.
...I'm lying on my bed in some contorted position with my hands over my eyes.
...I feel like there's a 100 lb football helmet glued to my head. Sometimes it's on fire.
...I can't raise my eyebrows b/c my forehead feels heavy and tight.
...I want to lie down but at the same time want my head suspended by something b/c anything touching it hurts worse.
...I'm thinking of crazy things that might make me feel better (floating in a sensory deprivation tank).
...I want to be little again so someone will pick me up and hold me and let me cry. You can't do this without looking ridiculous as an adult.
...I'm thinking of Red Day Redemption - something that will make me feel slightly better for even a short amount of time (my list so far includes Oreos and milk, walk at the park, eating a huge and delicious brownie at O'Charley's for lunch with Granny, talking to friends, going out for sushi, watching a movie and eating popcorn in bed...the list continues).
...I'm not feeling very big and brave.
...I'm trying to remember what my head felt like before headaches.
...naps don't hit the "reset" button in my head like they do on better days.
...I start going over the collection of meds I still have in my bathroom and get angry that nothing helps (and now I can't use the sleeping pills either).
...everything takes too much effort.
...I can't work at BigHouse (yes, that's a very good sign that it's a very bad day).
...I let headache thoughts infiltrate my real blog b/c I've already posted something in my headache blog today. :(
That's how you know.
Thursday, May 19, 2011
Vacation - Anybody Wanna Trade Heads?
I woke up this morning with almost undetectable pain in my head. Unfortunately it didn't last long, but it was a great five minutes! I've reserved my thoughts about headaches to my "headache blog" on the NDPH support group site (you're welcome, lol). But the one I wrote this morning I thought you might like to read. I'm changing it a little bit to make it applicable to you normal people (non-headache folk).
I can probably deal with chronic pain if there was something to turn it off once in a while. And someone else could probably deal with even my really bad days if it was temporary, I'm sure. I'm going on vacation to the beach this weekend and would really like to not be in pain! I want to be able to do everything I want - stay out in the sun as much as my skin will allow (lol), play hard in the ocean waves, eat lots of yummy food, stay up late playing cards...things that might be inhibited by pain or which might aggravate my head. So if I could just TRADE heads with someone who doesn't have any great weekend plans and is just going to laze around the house anyway, that would be great! Maybe I'll post it on the facebook to see if I have any takers...heck, I would even PAY someone to trade heads!
"Bear one another's burdens, and thus fulfill the law of Christ." Galatians 6:2
I can probably deal with chronic pain if there was something to turn it off once in a while. And someone else could probably deal with even my really bad days if it was temporary, I'm sure. I'm going on vacation to the beach this weekend and would really like to not be in pain! I want to be able to do everything I want - stay out in the sun as much as my skin will allow (lol), play hard in the ocean waves, eat lots of yummy food, stay up late playing cards...things that might be inhibited by pain or which might aggravate my head. So if I could just TRADE heads with someone who doesn't have any great weekend plans and is just going to laze around the house anyway, that would be great! Maybe I'll post it on the facebook to see if I have any takers...heck, I would even PAY someone to trade heads!
"Bear one another's burdens, and thus fulfill the law of Christ." Galatians 6:2
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