Birthday Week

I didn't plan to update so late tonight, but my (borrowed) internet connection is somewhat reliable right now so I thought I'd give it a shot.
I had a great weekend at home. I took Heather with me. Friday was such a good shopping day for me - I got $10 worth of body sprays at Bath and Body Works for $1.76! Then we went to Goodwill and I got 2 skirts, 2 pairs of shorts, and 2 shirts for $22. Yay! It was all very necessary, since I've lost weight (running, Topamax, headache diet...).
Saturday was the 9th Annual Birthday Fish Fry - my favorite meal of the year! I had an apple trifle dessert since I'm not a cake person and I'm avoiding the possible headache trigger foods, which include my favorites - chocolate and peanut butter. The apple dessert was quite good. I got a new Bible from Mom and Dad - it's the Hebrew-Greek Keyword Study Bible, NASB translation. It has Hebrew and Greek dictionaries in the back! I love having two Bibles to study with! Heather got me a crimson houndstooth Bama hat, and houndstooth flipflops and a hot pink t-shirt from her trip to Seattle.
Today was busy at BigHouse - the swimsuit and towel drive is keeping us hopping! If you'd like to make a donation, you can give online at our website: www.ourbighouse.org. I did music with all the kids today - it's amazing how on-task the preschoolers are when the big kids are there! I might include them every week.
Thursday is, of course, MY BIRTHDAY! Yes, my favorite day of the year. I'm planning to celebrate with sushi and bowling. :) And maybe some sort of birthday crown or button or otherwise identifying article so that everyone knows it's my birthday...I have no shame!
Headaches - mostly it's been ok. I have kinda bad times at some point during the day. I'm using a pain diary app on my iTouch to track patterns. It's a really great app (and free!). You can look at the calendar and it marks the days green, yellow, or red based on the numbers you rate your pain throughout the day. Last Sunday got a red, and all the rest have been yellow (which means it's been at 4, 5, or 6 out of 10 at some point during the day). Today's been worse than the past several - maybe because of the weather. It's really hard for me to tell. I doubt it's anything in my diet b/c I've cut out everything that's on the trigger list. It's a process..figuring out triggers and tricks to make it better. Running is my best remedy, although the effects don't always last very long. But right now I'd say I'm dealing ok - I get a little panicky when it gets to about a 6 out of 10 because I don't want it to get any worse andI don't feel like I have control over that (yet anyway - maybe someday). But being able to work and do what I want makes me really happy. So I'm making it. :)

Mystery Diagnosis!

I finally got a diagnosis! The "Voila!" post you've been waiting for! Well, more or less. I came across the term New Daily Persistent Headache on Friday, on the National Headache Foundation's website (http://www.headaches.org/) and I fit all the diagnostic criteria! It's a type of Chronic Daily Headache. I also read some blogs and posts on a NDPH support group website and finally felt like there was someone else who actually knew what I was going through - which was somewhat of a relief, even if all of their stories were horrible too. I emailed Dr. Maynard this morning and he confirmed the diagnosis - he said he had written in my chart as my official diagnosis at my last visit, but he didn't tell me! Not that it would've mattered too much I guess. Actually, I'm glad I didn't know b/c I got to enjoy my 5 days of no headaches while on the steroids. Here's what I know about NDPH as far as treatment and prognosis: -It's one of the most difficult types of chronic headache to treat b/c it often doesn't respond to medications made for migraines. So it's basically a lot of trial and error with meds, trying to find some cocktail of preventative and abortive medications to manage the pain.

-Sometimes the headache goes away on its own with or without treatment after several months, but other cases last for years or decades. Yikes. I definitely don't want to sign up for that, but I don't think I get to choose!

-Dr. Maynard wants me to start with supplements of riboflavin and magnesium oxide, and I'm also going to try to stick to the "headache diet" (cutting out foods that could trigger headaches or in my case, make them worse - a long list of things like chocolate, caffeine, cheese, processed meats, yeast breads, nuts, artificial sweeteners, etc.) and exercise (I got to run yesterday and it made my head feel a lot better - while I was running and a short while afterward) to try to manage my pain that way until I see the neurologist in Montgomery on April 28th.

Last night it got really bad and I ended up taking Nucynta (which is like oxycodone) and a sleeping pill so that I could sleep. Knocked me out for sure, which was the goal. Hopefully in the next four weeks I can keep a good record of my pain/food/activity so by my next appointment I might have some ideas about what makes the pain better or worse.

So it looks like I'm in for the long haul with this headache, hopefully with low-pain days where I can work and play like last week, but there's bound to be some high-pain days (or parts of days) where I'm going to go home and knock myself out. I'm going to look into some alternative therapies and see if any of them might be an option for me. I probably need to read up on music therapy for pain management too...surely I've learned some techniques that will help. Ha, but everyone who went to school with me knows relaxation exercises were not my strong suit!

What you can do - if you want to read more about NDPH, here's a good article: http://www.healthcentral.com/migraine/types-of-headaches-41643-5.html and here's a blog by someone who has it: http://www.lifewithndph.com/. You can assume that from here until the day that I say I have been miraculously healed from the headaches (and believe me, you will hear it!) that I am in some amount of pain. It may be tolerable, where I can be distracted and be okay, or it may be intolerable where I won't be able to do what I want, but I'm going to do my best to live my life despite the pain. Thank you for praying, and thank you for keeping up with me and being concerned - it really means a lot to me, you have no idea. I'll keep you posted on how it's going, but I don't want headaches to rule my life (or my blog!) anymore.

Headaches/Swimsuit Drive

Oh Monday...you seem like so long ago! The headaches came back on Tuesday. The plan Dr. Maynard gave me was to try Advil, and if it persists for a week, then to call him. I took Advil Tuesday, Wednesday, and Thursday but it didn't seem to help, and I got nervous about rebound headaches, so I didn't take any today, even though it was worse today than the other days. Such a bummer. I was really hoping the steroids were going to get rid of them forever. The good news is I haven't panicked like I thought I would if they came back. Maybe it's because Sunday and Monday I felt like my head was waiting for a headache...not that I had one, but that it was on the verge and looking for an invitation. So I've been able to work, although today I didn't accomplish anything except laundry. It takes a lot of effort not to get discouraged. I've been hesitant to tell anyone that they're back because I know it will be disappointing to them too. And I've been hoping maybe it was just fluke, and maybe they'll go away all on their own. But it looks like I'll be calling Dr. Maynard next week. I'm really glad to be back in Opelika. I got to go to Bible study this week, and last night we went to a concert at Lakeview Baptist Church with Downhere and Rush of Fools. So much fun! Update on BigHouse swimsuit and towel drive - we've gotten 3,287 requests from across the state. That's only about half of the total number of kids in foster care - but still quite an undertaking for us! If you'd like to help us by donating a new swimsuit or beach towel, check out the website for the list of drop-off locations and the size distribution. We'll be collecting the whole month of April. If you want more information or would like to get your church involved, you can leave a comment or send us an email at bighousefoundation@hotmail.com.

Back to BigHouse!

In case I haven't kept you updated with texts or on facebook, here's the update: I saw a neurologist at Vanderbilt on Wednesday and he said the only thing he would try would be a short dose of steroids - in hopes that my headaches would be responsive and the pain cycle would be broken. He even said they could be gone for good! Of course after 86 days of headaches, that seemed just a LITTLE too good to be true! But the other good news was that I could stop taking Topamax, the medicine I hated with a passion b/c of the side effects and it never did anything for my headaches. So Thursday I woke up without a headache, ate without getting a headache afterwards, and felt so good that I decided to run! Laying on the couch for weeks will take a toll on your muscles, however, so I only ran about 6 1/2 of the 20 min run and had to walk the rest, but it didn't give me a headache, and that was the real test. Friday I felt even better than Thursday and I got serious about packing my suitcase! I had an appointment with Dr. Maynard in the afternoon. He was glad I was finally feeling better and said it was fine for me leave the next day, which was my plan. The diagnosis was "intractable headache" which basically means a headache that never goes away. More like a fancy name for the symptom than whatever happened to cause it, but I'll take what I can get I guess. And whatever they call it - it's gone now! Hopefully for good. Saturday morning I helped Dad install their new microwave (which took 3 tries, no big deal) then hit the road for Georgia. Rainy drive but I loved seeing the mountains in Chattanooga! I got to hang out with Katie and Jess and Kevin for a while in the afternoon - helping Jess and Kevin pack up for their move to their new apartment (in Katie and Chase's complex - I'm SO GLAD I made them be friends! I just love all four of them! Especially together.) Saturday night Jenna and Trent hosted a Welcome Back from the Dead Shindig for me and I got to see lots more of my favorite people there. And eat Trent's awesome cheeseburgers and Jenna's flop cake (also known as Nanny's pound cake I think). Sunday I got to go to church and sing in the choir and then went back to Jess and Kevin's for the moving adventure. I haven't felt like I've contributed much to society in the past two months, but after making a few hundred trips up and down the stairs and feeling every bit of it this morning, I'd say I'm making a great comeback! I drove back to Opelika Sunday night. Grandmom was sure glad to see me and called Blake and Micah to report that I had gotten home and looked a lot better..."not so pale" apparently. :) I missed her a lot too. I got see Julie who'd just gotten back from the beach. Such a great weekend! I love seeing so many of my people! Today I went back to work!!! It was great. There's a lot going on at BigHouse - and a lot coming up in the next few months. I was glad to see the kids and the volunteers - they had made me a stack of Get Well cards while I was gone. :) So sweet! The kids have all grown so much in month I've been gone - I know it doesn't seem possible, but it's true! Anderson is doing all kinds of adorable things - like he figured out how to gurgle his milk, which is hilarious. And he has the cutest laugh! I got to eat supper with Micah's family, which was nice too. It's good to be home. It's good to be putting my life back in order. Praise God for what He's done in my life in the past 91 days. It's been way harder than I thought imaginable, but our God is faithful. It bothers me when people say, "God never gives you more than you can handle" because that is nowhere to be found in Scripture. But He does invite us to come and find rest in Him when we are weary and burdened (Matt. 11:28). I'm so thankful for the countless number of you who have prayed for me through this ordeal. I needed your encouragement so desperately. And I needed you to be strong in your hope and faith when mine felt small and weak. I wish I could share all the Scripture that I've been learning over the past several weeks...here is one of my favorites: "For no matter how many promises God has made, they are 'Yes' in Christ. And so through Him the 'Amen' is spoken by us to the glory of God. Now it is God who makes both us and you stand firm in Christ. He anointed us, set His seal of ownership on us, and put His Spirit in our hearts as a deposit, guaranteeing what is to come." 2 Corinthians 1:20-22 I love that because of Christ, we have the assurance of EVERY promise of God! And especially that of our salvation! I just love it. Thank you, God, for 5 days of no headaches, letting me see so many friends, and go back to work at BigHouse. My heart is full and happy!

Two Week Mark

So this is the two week mark, although I think it seems like much, much longer than that. A lot has happened I guess. So since my last blog update, I had the MRI - which was about 3x longer than my first one since they were doing 4 studies total, including the one with the contrast dye (which sounds awesome..I really want to see look at that). When you already have a terrible headache, an MRI, noninvasive though it may be, is probably one of the most painful things there is. In my experience anyway. So that was terrible. But all the results were normal. No blockages or narrowing in the blood vessels in my head or neck or anything else abnormal.



On Friday (that would be March 11th - the day of the Japan earthquake/tsunami) I had the spinal tap, which was also not fun. BUT - and maybe this is my imagination, since they said my pressures were normal - once they took four vials of CSF from my back my headache felt better. Not cured, but better. It felt like less pressure to me. Anyway, after that I slept for a couple hours after that. I didn't get the spinal headache or have a backache from that at all - lucky me! We were waiting to see if the neurology team or the dr was going to come and discuss the results but the nurse finally came and told us that the dr said the preliminary results (the opening pressure and the fact that the CSF was clear) were normal and I could be discharged. So after two days in the hospital all we had were normal test results, a new medication (Cymbalta) 2x Topamax, and I was more sick than when I started. And about a dozen balloons. :)



The funny thing about the balloons was that about 8 people said some version of, "Whoa...is there a patient behind all those balloons?" while I was being transported out to the car. If there was a trophy for having the most balloons...I would win it. Too bad they don't give trophies in the hospital...



Saturday morning, Bucky passed away. It wasn't unexpected, since she had been mostly unresponsive for several days. Apparently my aunt had called my parents around 6 that morning and they had gone to be with her, so they were there when she died at 8. It was strange because I guess we all started grieving back at Thanksgiving when we thought she was going to die, and this was more like relief. So I didn't feel like crying at all until we got to the funeral home on Monday night, and I didn't cry until the funeral on Tuesday.

So it's been a very strange week. My parents were both off of work on Wednesday. Mom took me to the ophthamologist - Dr. Maynard wanted him to check my eyes. I think he made that appt when we were still hoping to rule out pseudotumor (which we did with the spinal tap, but it doesn't matter). Mom was hoping - like lots of others - that maybe I just need glasses, and then I would feel better! But no, I still have great vision, and he couldn't find any reason for my eyes to be causing headaches.

I was having lots of problems with Cymbalta so I stopped taking it on Wednesday. Topamax is my worst enemy, although I think I'm finally tolerating the 200mg dosage. I don't think it's what I need. I still have headaches. So I'm hoping he'll let me stop taking it.

I have an appt with the Vanderbilt Neurology Clinic on Wednesday, and Dr. Maynard on Friday. I want to go home soon. I hate missing out at BigHouse. I miss my friends. I want to be productive. All I do is watch movies and lay on the couch. It's lame. I've been studying Hebrews 12:1-13 and Romans 4:18-25. I want to be found faithful. I prayed for hardship (what was I thinking??) and I want to be proven worthy of my calling.

I really, really, REALLY don't want to be sick on my birthday!!! Because I'm REALLY selfish.
:( Ouch. Yeah, that's the truth. Thank you for praying. You don't have to pray for me to be healed. God's heard that prayer, so you can move on to more important things. Pray that lost people will soften their hearts. Pray that you will be a bold witness to the people He's called you to. Confess the sin in your life. Pray for Japan. Pray that God would use Christians to reach them in their time of need. Pray for foster children that need loving families. Those things are important. Headaches aren't important.

Hospital

Hi friends.

Well the hospital is not really a place for sleeping. I was sleeping really well last night and then the nurse came in to come find a pulse in my feet or something strange. Woke up at 6 for good. Read Deut. 8:1-5, "Be careful to follow every command I am giving you today, so that you may live and increase and may enter and possess the land that the Lord promised on oath to your forefathers. Remember how the Lord your God led you all the way in the desert these forty years, to humble you and to test you in order to know what was in your heart, whether or not you would keep his commands. He humbled you, causing you to hunger and then feeding you with manna, which neither you nor your fathers had known, to teach you that man does not live on bread alone but on every word that comes from the mouth of the Lord. Your clothes did not wear out and your feet did not swell during these forty years. Know then in your heart that as a man disciplines his son, so the Lord your God disciplines you."

Let's see, then Dr. Maynard came to see me and said the neurology team would come by and ask lots of questions and poke and prod and decide what kind of tests to run. He started me on Cymbalta since he thinks I'm depressed and thinks it might help with pain (nothing has so I have my doubts). He such a nice guy, I just love him. Leilani came by since she works at Vandy and BROUGHT ME A BALLOON! Props to Cuyler for that. She said to make sure he got credit.

Then it was a revolving door with neurology residents and medical students and nurses asking questions and examaning me. It wasn't terrible but I was super dizzy the whole time. Like I had to keep closing my eyes. They gave me 200mg of Topamax last night so I don't know if that's the problem, or the Cymbalta, or just my general mystery diagnosis...so hard to tell!

Then Mom came and Dad took a shower and went to work. I showed Mom my clogging videos and started feeling super nauseous and then I actually threw up! After two months of nausea! Unbelievable! I'm glad I didn't eat any more than I did for breakfast and hadn't eaten lunch. We told the nurse and she said she was waiting for orders for medicine to be called in...I got sick three times and then there was nothing left. Finally an hour an a half later the nurse came with some compazine. In the meantime, the neurologist came and brought the neurology residents back (one of the was a Bama grad - how comforting! She liked my Alabama pajama pants.) They ordered an MRI of my head and neck with contrast dye to look at my blood vessels and blood flow and then the lumbar puncture. So that's what's going on this afternoon. I'm glad. This looks like progress to me. Then I'm not sure if I'll stay here tonight or go home or what. We'll see.

Life Interrupted

Oh finally - Internet! Well let's see...we got home Saturday night at 9:30.



Sunday - stayed home from church, my siblings came over for lunch, which was great. The good thing about brothers is they marry sisters and they brought me long sleeve shirts since I left all mine in AL. Got to see my nephews. Sweet babies, I love them so. Then we went to see Bucky and Granny. It was a long day.



Monday - Laid on the couch. Watched movies and Big Bang Theory. MacLaren is my hero.

Tuesday - See Monday. Got my lab results back from blood drawn on Friday, and they were all normal.

Wednesday - So today I had my appointment with Dr. Maynard who is really Bucky's doctor. He's great. He took me seriously and he saw how we've been through the wringer trying so many things in the last month and how tiresome it is and how I can't wait any longer for an answer. He said, "It looks like your life has been hijacked." EXACTLY! So anyway, he's a great doctor and he asked lots of questions and spent a long time looking in my eyes and such. He really wants to rule out pseudotumor cerebri which is basically increased intracranial pressure which causes symptoms that mimic a tumor. I don't have of the visual symptoms, but it's our last best guess for the relentless headache that's not responding to anything. So anyway, he got me admitted to Vanderbilt so that I could be seen by a neurologist, have some tests run, and get stuff done, real quick, which I've been wanting for at least a week. Yay!

So I haven't gotten a balloon yet.... just so you know.