A Time to Fight

It's been a very long two months. It has felt as if we are having to fight battles on every side that we really shouldn't have to fight. The biggest battle has been with insurance companies and once again my White Knight is fighting for all he's worth. His armor has dings in it and yet he keeps fighting. He's been hit by friendly fire simply because he's the one delivering the message, but he keeps on fighting. I've watched days where I see him weary in ways I haven't seen since the beginning of this battle 16 years ago. You see this wonderful man is a Fix-It man and when he can't fix it then it becomes a huge battle for him.

We're looking at a procedure that if I'm in the 80% success rate would radically change our lives for the better. It would take the pain and interrupt it with electrical impulses. As it seems to be in everything, the insurance company has denied treatment and we are now working through the appeals process. To be honest at first I didn't even want to try this. We've been told so many times over the years that a particular treatment plan has a good success rate for chronic migraines like mine that to even hope becomes a little scary. This is where my sweetheart shines, he's there to listen, to hold me, and then to encourage. So we've now done everything we're suppose to do to prepare for the treatment.

Yesterday we checked off our final “have to” by talking to a psychologist who helps determine how you're dealing with the pain and if your coping skills are adequate. Part of the time was spent in the rehearsal of telling my story and how my pain works and how it affects our lives. I actually don't mind sharing the story anymore, but he has certain questions that he has to ask and that is the part I hate. He was very nice but he wanted to know if I ever get depressed. The answer to that one was “Yes sir I do. I miss out on family outings, church functions etc. and I'm home alone with just God, me, and the pain. I decided a long time ago that a finite hell here on earth is more doable than an infinite one, so I'm not going anywhere.” He then asked if I worry or have panic attacks because of fear of the headache. My answers was along the lines of...I know what my normal high level of pain is, so when the headache behaves like “normal” then I do deep breathing and visualization exercises and we get through it. When it's not normal and I get scared, I wake up my sweetheart and we breathe together until I get centered and the pain comes down enough to deal. I don't know why it always happens in the middle of the night or at church but it does. So that's how we handle it. He asked if it affects our home life...I'm thankful it was a phone consult. I rolled my eyes and went on to describe how we have named the house “The Bat Cave” and that what would have driven me nuts at the beginning of the headache I've learned not to sweat it. If the house isn't as clean as I'd like it to be or the clothes have piled up or the dishes haven't gotten done (all of these things require some type of repetitive noise that pushes the pain higher), then that's life and we worry about the most important things like relationships and loving each other. I told him we have learned to keep a supply of paper goods and plastic ware in the house because dishes aren't something that my sweetheart will do. He does do all the shopping and handles most of the errands and gets my little guy out of the house for some activity because Mama just can't always do it. I've learned to pick and choose what activities to do and when. I've learned that if on a good day I can do some small something outside the house then we're better off.

Anyway after 45 minutes on the phone, he tells me that I've really paid attention over the years and that my coping skills sound like their good and working and that I have a good support system in place. He then told me one of the things he was doing was finding out if I needed to be on something else to help with the depression or if I needed to learn some skills to help me move through the worst parts of the pain, and he felt like I was doing just fine, and he would get his report to the doctor who would be doing the procedure and we would hear from them once the insurance gives the go ahead. Finally he says now I need to collect my co-pay. At this point I handed the phone to my sweetheart because the headache plays with my vision and I can't see the numbers clearly on the card. It also gives the doctor a chance to hear my support system in action. I knew the doctor asked him how he was when my sweetheart said, “I'm hanging in there like a hair in a biscuit. It's been a long 16 years of watching her hurt and we really appreciate anything you can say that will help the insurance company see that we're ready for the procedure.”

I have to say I am very thankful to have this part finished. I'm ready to either hear a yes or no from the insurance company, so that we can learn what the cash cost of the trial procedure and implant would be. Then we can make long range plans. I know that whatever goes on God has this and we will get through this time of waiting just like we have so many other things. Ultimately we know God has this and we just have to do our part by keepin' on keepin' on.

I didn't quote any verses to the doctor while we talked, but he does know that my faith is what I cling to in this battle with pain. It's the unwavering faith that comes with the promises given over and over again. Philip. 4:13 “I can do all things through Christ who strengthens me.” James 5:16 “Confess your trespasses to one another, and pray for one another, that you may be healed. The effective, fervent prayer of a righteous man avails much.”
It's these promises and so many others that get me through. Please pray with us as we hurry up and wait again. Pray that God will give us healing whether through this procedure or something else. Ask him to grant us contentment and peace in the waiting and ask that we glorify Him in all we say and do.

Thanks for listening and praying. Thanks for being there for our little family and for helping us to remember that we are a part of God's family and it is more numerous than we know and that faithful men and women pray for us daily. We feel those prayers. They are what God uses to see us through those long, dark hours of pain. May our Heavenly Father bless all us, and may we look to Him as we prepare and anxiously await His return.

A Time of Doubt

Romans 12:9 Love must be sincere. Hate what is evil; cling to what is good. 10 Be devoted to one another in love. Honor one another above yourselves. 11 Never be lacking in zeal, but keep your spiritual fervor, serving the Lord. 12 Be joyful in hope, patient in affliction, faithful in prayer. 13 Share with the Lord’s people who are in need. Practice hospitality

Working hard tonight on v,12. The first part to be joyful in hope...I've got that part figured out for the long term, but the short term is more of a struggle. Who really wants to smile when pain seems to be the status of every single part of the day. I can find joy in the small things like a husband who does laundry (actually that's a big one), my young man who chose to hit the punching bag outside after school instead of in his room, and that supper was easy enough to put together w/o much effort.

The hardest part is being patient in affliction. I'm tired of waiting, tired of fighting a battle that feels never ending. I'm ready to have answers. I'm ready to find something that makes all of this just so much easier. It's been a long 16 years! Time spent in waiting rooms, time spent in the dark awake because the pain is ugly, time spent sitting at home instead of next to my guys as they worship the Father at church but I'm stuck at home because I hurt. I'm tired of the guilt and the questions that come with how chronic pain affects our whole family. I tired of some small part of me deep down inside wondering if maybe just maybe I'm not praying the right way...is my faith not really strong enough.

The faithful in prayer part...well I think I've got that covered. I know that God is carrying me through this journey. I know that it is His strength that gets me out of bed, sets up school assignments, and carries out some small tasks around the house. It's his strength that got us out of the house just to ride down the rode a little while with the radio on and the sun shining in on us. I know that the Son lights the way every day.

Yet the Deceiver, he's been busy too. He's the one who fills up that section deep down inside with guilt and doubt. He's the one who whispers, “It's been a rough pain day take it easy don't push, you'll make the next service.” He's the one who I allow to take my contentment for the day and bury it in frustration over what I can't do.

So am I losing this battle...maybe, will I lose the war... NO!!! I can do what I need to do. I can count my blessings. I can notice the beauty that the Father puts in front of me at every turn. I can know without a doubt that the war has already been won. Christ has done that already, it's in the knowing that it's not about being the best Mama in the world or that person who tries to smile even though everything seems to be falling apart. It means I finish the race to the best of my ability giving God the glory and honor no matter the difficulty.

It's knowing that hating the bad things in this world is okay, because Christ said so. It's knowing that I find the good things and I tie my knot there and cling to them. It means I love even those I don't feel much like loving because God loves me at my ugliest. It's in realizing that I have a spiritual family that encompasses more people than I realize. It's knowing there are precious people who are sent my sweetheart's way who listen to all he has to bear and then takes the time to pray for him, for me, and for the pain to leave us be. It's in the recognition that we are not alone not ever. It's knowing that as long as I take care of my little section of the world, all those doubts and frustrations they don't have to control just how I look at the world.

God created me and you to be his daughters. He made me a daughter of the ruler of the Most High King. He made me special so that there has never been anyone just like me before or after my time here. He has promised me a room in His house for all eternity...all I have to do is finish the race. He doesn't ask me to do it a top speed, sometimes it's a shuffle, a step, or sometimes it's all Him carrying me just because I am His and He is mine.

He may not ask me to give money or to open my filthy house to visitors, but He does ask me to open my heart and share just what I've learned from pain. It's opening my heart and taking a chance of being judged instead of loved. It means that I comfort those who may just be starting this difficult path, or maybe it's allowing someone to see the flaws in me, so that they can see the perfection of the Creator. Hospitality takes on new meaning when many days are spent inside a dark house. It means admitting to my tween-aged son that I really blew it. It means apologizing for curt replies to questions asked. It means encouraging even when I don't feel like encouraging. It's accepting that I have no control over some of the things in my life, and changing the ones I can. It's taking the time to remember that I don't always say what I think I said because that's just how the headache works. It's trying to remember to use a kind tone when asking for things to get done around the house. It may even be remembering what it was like to be the little kid who felt like she carried the world, and that my big boy may feel that way too.

It means I get still and let God have His way with me. It means finding ways to store up scripture and songs in a brain that has a hard time remembering just what this sentence was supposed to say. It's allowing the Holy Spirit to take my petitions to the Savior who will then take them to the Father. It's believing in the hope of today and tomorrow and eternity. It's taking life moment by moment and being thankful for the opportunity.

Father help me to keep my eyes on you, my heart open to those around me, and to give forgiveness even when it hasn't been asked for. Help me to be who you want me to be, help me not to be jealous and help me not to focus on the can'ts but the cans. Thank you for being with me in all things. In your son's name, Amen.

What's It Feel Like

It's been a very long time since I've written specifically about what it's like to live with this ugly old headache. I don't want this to be a "whining post" or an "old poor me type post"; however I do believe that to really know me now, you must know what is going on in my head. So here we go, I'll do my best to put into words what the headache feels like.

To begin with since the pain is constant, there is always some type of background noise in my head. Many times it's just the constant throbbing of the pain (those are the good days). Other times, it feels and sounds like a stake being pounded from the back of my head to the front. With that comes the light and noise sensitivity, most days normal inside lighting feels like the bright sunshine in the middle of the day. If we go outside or places with brighter lighting it's like having all the lights in the football stadium on and shining directly into my eyes. I have some people who have not seen my eyes and on the off chance they see me without sunglasses some of them don't even recognize. There are times that even in the dark the headache itself has a light show that goes on even when my eyes are closed. It's painful and draining simply to deal with just that part. Then you add to that the noise sensitivity. Repetitive noises, squeals, and high pitched sounds are the hardest, but there are also times when just the sounds of a room full of people talking feels like it's being put through a megaphone. Sometimes out of nowhere even small sounds can feel like they come through an air horn.

I know that I am guilty of snapping at people during times when I'm dealing with both sets the noise and the light. It's a knee jerk reaction like yelling “Ouch” when someone steps on your toes. Over the years, my sweetheart has been the one to sit and watch me cry after pushing to be out and about. He is forever my protector and will work to prevent this amount of extra pain when he can. There have been many times when I'm sure people have found us to be very rude, because in stereo we will express displeasure if the noises is one that isn't necessary.
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For this reason, it has to be a good day for us to choose to eat out. If the restaurant is one that is full or one that noises bounce off the walls, it becomes even harder. When I was teaching school the lunchroom was the hardest place to be, now it's usually the fellowship hall at church. I want to be a part of family gatherings, church dinners, and conversation before and after church. I will push to the point of needing to make a trip to the ER(which doesn't work for me and is a complete waste of time, but that's how ugly the pain is). There are times when the pain in my head is soo loud I feel like I have to yell over it. There have been times when I wanted to stand in a chair and yell “Shut up” from the top of my lungs. I've learned how not to do just that, but I may leave quickly after services or in the middle of a meal. It doesn't mean that I don't want to be a part of things or that I want to stop all the wonderful visiting and fellowship, so I leave. If my sweetheart sees me leave, he follows relatively quickly and we take home a very disappointed little boy.

I'm not saying all of this to hinder those I love from making a joyful noise when they are together. I just want you to know that I'm not mad or don't want to spend time with you, it's just that I've reached my capacity for handling it all.

As always, it is my prayer that my words are kind and my disposition sweet, but on those days when I fail I ask that you take the above into consideration and forgive me. Many thanks to all. Please keep us in your prayers. There are many times when our plans have to change at the last minute and I'm home alone. It is during these times when the devil tries to work on my faithfulness. Your prayers are coveted. Thanks for reading.

The Headache and My Tongue

I’ve been wanting to share some more of my headache journey because we’ve really had to struggle with it again as a family. I’ve been waiting to do it because I’ve been hoping that time would offer a better perspective and I think it has some. The hard part is where to start because “WOW”!! is really all that comes to mind when I begin looking at the gradual changes.

If you know me well, then you know we did a major med change in April because the pain was just getting to be unbearable. I wasn’t able to get out much and I was on some pretty powerful meds and it just didn’t seem to be worth it. We were back to a point where we were looking at quality of life versus possible side effects etc. We’d made the decision it was time to take a step back in time and try a med that had made life much better for me and even allowed us to adopt our precious boy. We just knew we’d have to watch for calcium levels etc.

Long story short the doctor agreed with us and also asked us to try a sister drug to Topamax. I’ve talked about what we went through with it before, so we were hesitant but the doctor assured us that this was like Topamax lite and it had fewer behavioral and cognitive side effects. So fast forward to mid October and I start feeling grouchy and I’m fussing about little things, crying at the drop of a hat, or just plain feeling angry out of nowhere. Now every Mama knows that sometimes we just have bad days or weeks, and kids know which buttons to push so I tried to just shake some of it off. I mean I am 41 so YAY!! Hormones, right?!!

Well, by the beginning of November, it wasn’t just the emotions I was fighting a barrage of ugly thoughts and ugly words over every little thing. This has not ever really been one of those areas that I’ve had to struggle with, but boy was I struggling with it now. If any little thing irritated me, I had a string of ugly words pop up in my head. At this point, I knew it wasn’t entirely me and that the meds had lowered my filter for my mouth. If I thought it, then I had to work extra hard to make sure it didn’t pop out. I was working so hard on just keeping the foul language from popping out that who knows how many times I was more blunt than I should have been, or responded in a more coarse manner than I ever had before.

I was getting so frustrated with myself, not to mention the yuck my boys were dealing with at home. (By the way, I found out I had been grouchy for a lot longer than just since October.) We knew to be on guard for changes in behavior. The question was “Was my ability to get out and go places worth the irritation and frustration we were dealing with?” For a while the answer was yes, then all of a sudden it was a big NO. I began to feel like I was losing my fight with the devil and that he gaining ground with each day. I thank God for special friends who put up with you during times like this and will honestly tell you when its definitely time to seek help. What a relief it was to hear it from someone else! My boys love me so much and they love having me get out and go places with them, so they were willing to deal with more…

So I called the doctor, he worked me in the next morning, and he changed my meds around. Its been almost a month and we’re seeing improvement. The ugly words aren’t always at the front and my ability to control what I say is getting better. It’s not great yet and I definitely am not back to my normal, but we’re making progress. I’m not as grouchy, the stuff that slips through the filter isn’t filled with anger but could be phrased better.

The most important lesson I’ve learned is what ever we put in just may come back out and we may have no control over when it does.
Jam 3:5-10 Even so the tongue is a little member and boasts great things. See how great a forest a little fire kindles! And the tongue is a fire, a world of iniquity. The tongue is so set among our members that it defiles the whole body, and sets on fire the course of nature; and it is set on fire by hell. For every kind of beast and bird, of reptile and creature of the sea, is tamed and has been tamed by mankind. But no man can tame the tongue. It is an unruly evil, full of deadly poison. With it we bless our God and Father, and with it we curse men, who have been made in the similitude of God. Out of the same mouth proceed blessing and cursing. My brethren, these things ought not to be so.

We must be sure that if we only want good things to come out then must only put good things in. I’ve also learned to be more patient and forgiving when someone slips up and says something they didn’t intend to say. We need to give each other the benefit of the doubt. It doesn’t mean we excuse wrong, but it means we are loving and patient, instead of keeping a score card of how many times someone did or said something we didn’t like. Let’s get busy working on ourselves and what we can change within.

Phl 4:8 Finally, brethren, whatever things are true, whatever things are noble, whatever things are just, whatever things are pure, whatever things are lovely, whatever things are of good report, if [there is] any virtue and if there is anything praiseworthy--meditate on these things.

Father, help me to chose the books I read, the TV shows I watch, and the movies I go to see wisely; so that I do not put into my mind and heart things that do not please you. Help me to study your word daily, to take the time to notice the good, and to work on pleasing you. Help me to set the example I should before my family and friends, and help me to glorify you in all I say and do. In Jesus’ name,

Headache History and Pride

Wow! The summer is over and school is back in session and all the writing I had planned to do…just didn’t get done. We were blessed to complete our second full year of home schooling, run the Fun Run part of Agape’s Run for a Mom, send little man off to camp for a week, see some sweet friends that we haven’t seen in forever, completed 4 weeks of swimming lessons, and last but not least went to Art and Science classes at our local hardware store for an hour each Wednesday and Thursday. The best part is the headache cooperated and I was able to do the chauffeuring.

Praise God for the new medicine combo I’m on now, I can actually handle traveling a couple of hours without having to go to bed once I get there. So things are looking better pain wise for us too J Instead of living with the level 9 or 10 , it now stays around the 7 or 8 level. We do deal with spikes up further than that, but we are also blessed with short periods of time with it lower too. It’s been a long time since I’ve really spent anytime sharing the pain battle and why I use the word we when I talk about it. When one person in the family deals with chronic pain, then the whole family does. Our schedules, the lighting in our home, laundry getting done, and how we play are all determined by the headache.

One of the hardest things, I’ve had to come to grips with is that the migraine does put limits on what I can do. It also, along with the meds, affects my ability to say what I want to say when I want to say it. One of the meds has turned off the filter in my head…you know the one that says don’t talk about that you can hurt someone’s feelings…or hey shut your mouth for a few minutes and listen to what the other person has to say. It also has made me more grouchy and I get frustrated much quicker than I normally do. These side effects are not new to us, we had tried a med combo very much like the present one but one of the meds caused even more cognitive and behavioral “glitches”.

Needless to say the 2003-04, school year was a difficult one. I think I was going through just as many mood swings as my 7th graders. Pride can be a terrible thing, I kept most of the struggle to myself. (Pro 16:18 Pride goes before destruction, And a haughty spirit before a fall.)My sweetheart was running two small business and we had an infant/toddler in the house who got all of our “extra” attention. In fact, I had been dealing with quite a bit of paranoia and irrational anger that I was able to keep the lid on at home and for the most part at school. However, I found myself becoming more and more out spoken and I couldn’t seem to put the brakes on my mouth. Here’s where the pride thing comes into play, because I have always considered myself to be a peacemaker. I could put my feelings on the back burner and deal with the situation at hand and it was really no big deal. Well, it became a big deal. I now know that many chronic headache patients on Topamax deal with these changes..it’s been labeled dope-amax on the Head pain sites by patients and many of them dealt with swift changes in mood that ultimately lead to their being fired or even for some led to divorce. In my case, my contract wasn’t renewed. I can look back and see why. But maybe…just maybe if I hadn’t let my pride get in the way things may not have happened the way they did.

I’ll say this, it’s a scary thing to not be in control of your emotions when you’re used to being in control. Learning that I have no real control is another lesson the headache has taught me the hard way. It has literally brought me to my knees, pleading in prayer for the pain to end. (If you happen to be one of those who believes that my faith is just not strong enough and I’m not praying in faith ..,yes I’ve heard this before…then I suggest you need to take a look at the life of Paul and God’s response to his begging for the thorn in the flesh to be removed.) I now understand there is no me, there is only God and His power working in me. (2 Cor. 12:9 but he told me, “My grace is enough for you, because strength reaches completion in weakness.“ I will therefore boast in my weakness most gladly, so that Christ’s strength will remain upon me.) If it were just me, I would have taken my life a good 10 years ago while going through withdrawal from prescription meds that I was taking as prescribed.

It was another point of pride with me that I was able to finish college with good grades while being married and be labeled as the world thinks “smart”. It becomes very humbling when you realizes that people can’t understand what you’ve said either because the migraine has words coming out in a jumble you don’t intend, the words are so slurred it sounds like you’re drunk, or you know what you want to say but cannot get the words to come out of your mouth. On top of this, my eye would droop or twitch for no reason, my mouth would pull down on one edge, and the act of brushing my hair would actually hurt. So here I am teaching, high school math, to teenagers with all this going on; and they are looking at me like I’m the side show. But my pride kept me from mentioning that I felt like someone was watching me always, and that every step I took was painful…let alone that my teeth were beginning to break if I ate anything remotely hard.

So, we get to the last 2 or 3 weeks of school, they tell me they aren’t going to renew my contract…and all I can see is how are we going to keep the insurance going in all this mess…and I better go see about every little thing between now and September. I found out that afternoon I had stress fractures in both heels thanks to the med. Combo and no teaching position to go to for the next year. Actually we sat and cried together and I finally let my sweetheart know to what extent I was dealing with the paranoia and anger. We prayed and as always God provided just what we needed. Not just job wise, but for our marriage as well. He gave us the quiet before the storm to help us charge our batteries, and He put good friends close by that we could lean on even in the hardest of times.

I’d love to say that we no longer deal with pain every day. I do. I also know that the med combo I’m on now is very close to the one we dealt with that school year. So I deal with glitches in speech, I get grouchy easy, but so far we’ve been able to manage it. I want the people I know and love to know where I’m coming from and instead of trying to hide any issues this go round… I’d much rather they be out on the table so we can stop them if they get ugly.

I’m a firm believer in the fact that God will work out all things for good for those that love Him.(Romans 8:28 We know that to them who love God, the ones called according to his purpose, God works all things together for good;) Notice he doesn’t promise the way will be easy and good, but that he will use all those things in our life for good. Finally, my prayer for myself and you is that we will take the hard times…those moments when we feel like God has turned His back on us…and know that He is refining us and using us so that through our weakness others may see His strength. (1Peter 1:7 Your faith (which is more precious than gold which perishes, being proved by fire) has been tested that you might be found in praise and glory and honor at the disclosure of Jesus Christ.)

N.T. scriptures are quoted from McCord’s New Testament Translation of the Everlasting Gospel. O.T. scriptures are quoted from the NKJV.