Monday, December 25, 2006

445 days

That's a long time for a headache.

Today it's bad. It's been at around a 5-6 most of the day in spite of the Methadone and some generic extra strength tylenol stuff.

I'd like to just curl up in a ball and wish the world away, but it continues to spin and things keep going on even though I'd rather they didn't.

I guess you can't have everything.

We did Christmas last night so today is a quiet day here, which is good.

I hope things get better instead of continuing to head downhill. This is no fun.

Friday, December 22, 2006


I counted my Methadone tonight and I have enough to make it till the 4th.

My appointment with the pain doc is on the 5th.

His office is 50 miles away.

They can't call in refills on Schedule II narcotics.

I guess on the day after Christmas I'll be calling to see if they can get me in on the 2nd instead of the 5th since he's only at that office 2 days a week.

Great that I discovered it this early...

At least if I run out I have Vicodin left and I'll take it if I have to.

I am not, however, going 100 miles to pick up a prescription for meds that I have 2 too few doses for.

Maybe I'll just go in all my pained glory since hubby's going with me and he can see what happens when he doesn't count things right.

I dunno...

It's almost Christmas. It seems weird.

Wednesday, December 13, 2006

bad day

My emotions are running all over creation.

I can't sleep, and when I do, I don't rest.

I'm jittery and twitchy.

I spent some time this afternoon crying after my son kissed me goodbye on his way out after visiting me. I don't know why, and I don't know how it triggered.

I'm stopping the Prozac. I'll see if that helps.

Tonight I'll take a Xanax so I can at least sleep. I have to. I need to rest.

I'm exhausted.

I'd like the people who say I can still work with this disease to be where I am, right now, feeling what I'm feeling, and then decide if it's true or not.

It stinks.

Monday, December 11, 2006

430 days and counting

Things have pretty much settled into a routine. I'm still on the Methadone every 8 hours. They did try me on 60 mg of Prozac but I was getting some really weird side effects at that dose so I went back down to 40 mg and it seems to work better.

I still have the ringing in my ears 24/7, the sensitivity to light and sound, and for some reason now when I blow my nose I get lightheaded.

It's been over a year now since I've worked. I've almost forgotten what it was like to get up and have somewhere to go.

I was able to tolerate daughter and her family coming over for Thanksgiving dinner. They were only here for a couple hours but it was nice all the same. We're going to try again at Christmas and see how it goes, depending, of course, on how I'm feeling.

I haven't heard about a hearing yet. I'm not holding my breath. I know this could take a long time. There's not much else I can do but wait. I certainly can't work...

Tuesday, November 14, 2006

it's been two weeks

The doc increased my Methadone dose to 2.5 mg every 8 hours instead of every 12. It took a few days to get my system to accept it. I had to stop after 3 days of it, and then I waited a couple days, and then I tried again. The first time I had a horrible ache behind my eyes almost like I was trying to go blind and my eyes were more sensitive to the light than they've ever been. The second time around it's better. The pain has normalized at about a 4 on a consistent basis. I still have the tinnitus and the photo- and sono- phobia, but I can deal with those if I don't have to deal with the pain, too.

I go back on the 3rd of December and I'm thinking he's going to suggest I up it to 5 mg every 12 hours. I wouldn't mind. I kinda liked the every 12 hour thing. He mentioned something when I was there last time about the psychology of short-acting pain meds and it made perfect sense. First of all, you have the up-down-up-down because they don't maintain your pain level. Secondly, you're tied to that every 4 or every 6 hour thing, and it comes down to your life revolving around that time frame and you get obsessed with taking those meds and forget how to live. Thinking back, I can say I fully agree with what he had to say.

I still don't handle increased activity well. I had my grandsons for a few hours yesterday and all I've done today is sleep, and I've been sleeping hard. The doc wants me to start exercising 3 times a week for 15 minutes a day and I'm going to give it a try, but it wears me out. I'm hoping this drowsiness will wear off.

At least the pain is better...

Tuesday, October 31, 2006

October 31 - day 389

Yesterday and the day before were bad head days. I took a DHE on Sunday, and yesterday I took 2 extra strength Tylenol for pain. I need to talk to the pain doc on Friday and see about getting something for breakthrough pain, though I'm not holding my breath that he'll give it to me. He seems to have a bit of an attitude about it all.

If I don't take the Xanax before bed, I have some really weird dreams. Last night I think I was just flat worn out and I don't remember dreaming at all. The two nights before that were strange indeed. Again with the chasing of never-quite-identified and ever-elusive something, with or without the assistance of weird people. I'm sure this has some significance but I don't want to even stress myself trying to figure it out.

Daughter has a job interview today. Her hubby will be staying home for a while until they get his seizures under control and he hasn't had one for 6 months. Until then, he can't drive. It's the law. She is also taking him to talk to the Medicaid people because when she applied for him they said they needed to talk to him. He made bread yesterday and took care of the boys while she was out looking for work. I'm hoping he gets approved for the Medicaid so he can get the MRI and EEG and maybe they can tell him what's going on with the pain and numbness in his left hand and arm. I'm concerned for him. He's awful young to be going through this, but I guess he's been having the seizures all along and his family kind of blew it off as "fainting spells." Deliberate ignorance blows me away sometimes.

It got warm enough yesterday that it's still okay in here even though it's getting colder outside. The heat hasn't kicked on yet, though I'm sure it will soon enough. We've got a front coming through.

I'm still waiting to hear about my appeal. It seems to take forever.

Friday, October 27, 2006


The Methadone is working!

I can't do much more than just slug around like I used to or the pain gets worse, but as long as I stay about as active as I was, it keeps the pain at a relatively handle-able level. The nicest thing is the level is consistent, not up and down like it was with the Vicodin.

It's also nice to not have to take meds every 4 hours. This 12-hour thing I can live with.

I still have the ear-ringing, and the sound and light sensitivity. I guess you can't have everything, and I think I remember reading that the tinnitus might be from nerve damage. Maybe it was the nerve that got aggravated and started these headaches...I don't know.

Son in law was just diagnosed with seizure disorder and now he can't drive till he's been seizure-free for 6 months...poor guy...he lost his job because it involves lots of driving. My daughter is going today to apply for assistance and to look for a job. They have no insurance for them but at least the kidlets have Medicaid. She's gonna see if they qualify now that nobody is working. Sometimes you just wonder at the irony of life.

Tuesday, October 24, 2006


This afternoon I graduated from 1/4 Methadone tablet every 6 hours to 1/2 tablet every 12 hours. So far, no bad effects.

I'm holding on to hope.

I'm feeling better than I have in a few months. Maybe this time we have a winner.

I go back to the pain doc next Friday. Hopefully I'll have good news for him.

Monday, October 23, 2006

Looking up

The Methadone is working. It's not working as well as the Vicodin, but it's only day #2 and I'm on a pretty darn low dose. I hear it takes a few days to get to the correct level in your tissues so I'm just trying to take it easy for now and let it do what it needs to do.

I haven't had to take anything for breakthrough pain, which is good because I don't have an order from a doc to take anything and I want to do this correctly. I know I can blow a hole in the entire thing if I take chances.

My eyes hurt today. They're very sensitive to the light. My ears are still sound-sensitive and the ringing has gone nowhere. It makes going out of the house to any place bright or loud or both very difficult. That's why I mostly stay in.

I did get some fabric cut this morning and then I had to come take a break. My quilt and pillow are my best friends lately.

Ah, such is the life of someone with chronic daily headaches...

Sunday, October 22, 2006

trying again

This morning I took a quarter of a 5-mg Methadone pill. I wanted to give it another try before I gave up on it. I had a slight tingling in my lips, and I felt a little loopy, and my typing skills slowed way down, but it was nothing like I experienced last time. The pain relief is about the same as it was with the Vicodin.

6 hours later I took another quarter pill. The original order was for 1/2 a pill every 12 hours and I think maybe it was just too much for my body to handle. I'm still doing well as far as I can tell. I even managed to make dinner and didn't fry myself or burn the food.

I'm hoping...I refuse to give up hope. I'm an optimist at heart.

I'm going to take another quarter pill at 9:15pm and see how I do through the night. If all goes well, I'll do it this way again tomorrow.

I can handle feeling a bit loopy if it helps with the pain.

Saturday, October 21, 2006

not gonna work

The pain doc put on my new Vicodin prescription to take 1/2 to one pill 3 times a day as needed instead of every 4-6 hours. Yesterday morning at 1045 I took a whole pill, figuring I'd give it a try. By the time the 8 hours was up, I hurt so bad I couldn't open my eyes. Even 3 hours after I took the next dose my level was only down to a 7. I can't do that again.

I forgot that I don't absorb meds right since my surgery and that long-acting drugs aren't long-acting with me because they don't stay in my tummy long enough to get the meds where they need to be. I was really hurting.

Poor hubby...he's so worried about me, and my oldest daughter called to check on me twice...I hate this.

I'm writing it all down in a spiral notebook and I'll be taking it to my appointment in 2 weeks. If the pain doc isn't willing to work with me and give me something to help with the ouch, I'm gonna have to give him his walking papers. He's not the one living with this...I am.

Friday, October 20, 2006

I give

I caved in last night and took the initial steps to contact an attorney for this disability mess. It was suggested to me by 3 people in one day so I took that as a sign.

There's a firm in St. Louis that does lots of this kind of's a big, well-recognized firm, and they handled our bankruptcy almost 6 years ago. I did the "contact us by email" thing.

It's 2:15am and I'm awake, uncomfortable enough that I can't get to sleep no matter where I put my head on the pillow, on my back or my side, and once again missing the ability to lie on my right side, which was my favorite side to sleep on till the monster came to visit.

This does not bode well for the day.

Such is life.

If the ringing in my ears would just stop....just for a few minutes...but then again, if it did, and then started again, I'd probably be twice as miserable.

Wednesday, October 18, 2006


Yesterday was a bad head day.

I ended up with a migraine on top of the other pain by mid-afternoon and had to give in and take a "poison pill" to get any relief. Still, the pain from the other hurts stayed higher than usual, and that didn't help the migraine at all.

This morning I really wanted to just take a whole Vicodin but then I have to wait 6 hours to take any more and then it throws my whole freaking schedule off and that is way more than I can handle today.

Some days I just want to sit down and cry, but that makes my head hurt more, and I can't have that, now can I?

Oh, the joys of an invisible disability...

And then I'm looking on the website for the face pain group I belong to and it says that because Missouri is one of the "test states" for this new SSDI thing and I was denied on my first try at applying for benefits I was just tossed in line for a hearing and it may take up to a couple YEARS to get one. Thank goodness hubby has a job, or I'd be living on the streets.

It's disgraceful how people who get sick are treated.

I'd better shut up while I'm ahead.

Monday, October 16, 2006


I'm just irritated right now.

It's not right that I should have to go searching for a doctor who is willing to help me get these headaches under control.

It's not right that I am being looked at as someone engaging in drug-seeking behavior because I hurt 24/7 and want some relief.

I'm not looking to get stoned or high.

I just want to be able to sleep and not wake up feeling like I haven't been to bed yet.

I'd like to be able to go outside and not have to cover my eyes all the time because the light from the sun hurts.

I'd like a doctor to look at me and see me, a person, a responsible adult in pain, and not some junkie searching for a fix.

I am so ticked off right now I could scream.

at it again

It's been a whopping week and a half since the monster woke me up at night. Here I am again, having been awake since 1:20am, and finally I gave in and got up to take some medicine.

I looked back over my medication diary and found that I average 2-3 wakeups a week. No wonder I was starting to think things were easing up.

Pound pound pound...throb throb throb...

The familiar feeling - I know it all too well.

Today I'd really like to stay in my cave but my daughter has 3 sick kids and they need to go to the doctor and her hubby has job training and has to take their car so I'll be taking hubby to work so she can use the van to get the kidlets to the pediatrician. She's helped me out so much I can't say no...she's gone out of her way to take me to the doctor over and over and over, and helped us with food, and brought over my precious boys to see me because she knows that it makes my heart sing. That's what family is for.

I'll also be making phone calls to try and find another pain management doc. I'm really thinking of specifically targeting female docs this time. I'm tired of the macho male attitude thing. I have to go to the web site for our insurance and see who's on our plan and go from there.

At least I have enough Vicodin for almost a month, and I know that if I need more I can call my neurologist and he'll give me some more to get me through till I find a decent pain doc who is willing to work with me and my multiple sensitivities and allergies.

I'm going to start keeping much more information on a daily basis about when the pain gets worse, how often it wakes me up, how often I have to cancel plans and stuff, so that when I have my disability hearing, if I ever get it, I'll have the stuff there in writing to show them. I know I have a fight on my hands because my disability is an invisible one. If they turn me down I'll get a lawyer but I hate the thought of taking money we need to pay our bills and get back on our feet, or at least on our knees, and giving it to someone to pay them for something I've paid into since I was 16 and that I should be able to get if I need it. It's not like I'm lazy. I'd far rather be working. I'd far rather get up, get dressed, and go make the kind of money I was making before this all took over my life than to live in semi-darkness, having to plan my days around an illness that has turned me into a housebound, mostly-isolated loner.

I miss my life.

Friday, October 13, 2006


I've been stewing most of the day.

The pain doc thinks that because I had a paradoxical reaction to the Methadone my headaches must be anxiety or stress related and that I should totally stop taking the Vicodin and increase my Prozac again.

I'd like for him to have to deal with this pain for a solid stinking year and see how HE feels.

I'd like for him to lose his job, his car, his income, and have to fight with social security because of an invisible disability that makes a lot of people think I'm making it up.

I'd like for him to have to live in a cave because of sensitivity to light and have to use the captioning on his TV because he can't stand for the volume to be up.

I'd like for him to lose the ability to get out and around because the sounds and smells of society make him sick.

I'm mad.

I'm also getting a new pain doctor.

I don't have to put up with this.

Saturday, October 07, 2006


I feel like every single nerve ending in my body has made its way to the surface and is reaching out for, and getting, every single stimulus it possibly can.

All at once.

It's freaky.

It started a couple hours after I took the fingers and lips were slightly tingly. I thought maybe it was just stress or whatever.

When I went to bed I had to get up to use the bathroom and then when I got back in bed my leg tingled...and my fingertips...and my lips...and pretty soon it felt like I was a giant tingle.

I've been up almost all night.

I feel hyper-stimulated all over. My eyes, my fingers, my skin...everywere.

This is not good.

It's scary.

I wonder how long it will take to wear off.

I'm afraid to take any more pain meds till it's gone.

Hubby didn't have any breakfast and he didn't take any lunch. I wasn't there to make sure he did. He'll probably grab stuff from the vending machines. I hate it when he has to do that. It makes me feel less than I can be.

I think this might well be another paradoxical reaction.


I guess it's back to the Vicodin.


Friday, October 06, 2006

making a change

So today the pain doc was much nicer.

He gave me a script for Methadone, which, it turns out, isn't stocked in that dosage at any of the pharmacies in the town we usually go to for our drugs. I had to go 16 miles in the other direction to get it. I started it this afternoon and the only bad effect so far that I notice is insomnia, which I can live with.

The pain is still there but the level is less and I know it takes this drug a while to get busy so I'll hang in there. The hardest thing right now is getting on schedule and remembering not to take any Vicodin with it.

I go back next Friday to be re-evaluated to see if the med is working.

I'm hoping the news is good.

Thursday, October 05, 2006

ow ow ow

I am so tired of this pain I could scream.

However, that would only make things worse.

Instead, I think I'll hang out till 10, when I can take another pain pill, and then I'll take a nap.

I didn't sleep well last night. I came out here for a while and then dozed off but I remember hearing the TV in the background even though I had it turned down low and it was in my dreams. I hate nights like that. I wake up feeling more tired than I was when I went to bed.

Tomorrow we go again to the pain doc. Hopefully he'll adjust my meds. They aren't helping all that much any more.

My eyes hurt. I'm going to go try and rest until it's time for my medicine.

Wednesday, October 04, 2006

some good changes

The increased dosage of Prozac is helping me sleep better.

It's also helping me cope with the pain a bit better.

Of course, that depends on the day.

The Indomethacin was a wash-out. My stomach bloated up, I was dyspepsic, my feet swelled, I couldn't sleep, and I felt miserable. There was no way I was staying on that drug. It simply wasn't worth it. I'd rather stay undiagnosed.

Friday I see the pain doc again.

Still no word from Social Security. I'd like to have a hearing sometime in the next decade, especially since now my neurologist is backing up my claim.

Monday, October 02, 2006


After 5 glorious nights of sleeping uninterrupted I'm back to not sleeping.

It was nice while it lasted.

Between the pain in my head and the ache in my leg I'm not comfy enough to sleep.

Thank goodness I can take naps.

This leg thing bugs me.

I don't know what the heck I did to it.

I do know that yesterday I was careless and didn't pay attention to the time and missed taking my meds for pain twice and that's why I'm hurting got out of control.


Here we go again.f

Tuesday, September 26, 2006

another head-pounding day

It's been a year now.

I'd give a lot of things, if I had them, for a pain-free day.

My daughter invited me to a Christian concert next Friday. We have the tickets. We're going if I have to leave after 2 songs. I'll take *2* Vicodin if I have to. I haven't been anywhere like that for a long, long time. I plan on doing absolutely nothing that day except seeing the pain doc and sleeping so I will be rested and in the best shape I can be in for the concert.

My head hurts a bit more today and I know it's because I'm taking the time to do some sewing. I can't just sit here all the time. It drives me bats and I've gained weight and it makes me mad.

Patience...patience...stay calm...frustration only makes it worse...

Saturday, September 23, 2006

Silly me

Two or three nights of falling asleep and staying asleep till morning and I start expecting it.

Like it's my right or something.

I've had two days of the Indomethacin now and nothing to report except bad gastric upset both days. No relief of my headache, but then to be honest I didn't really expect it.

Still, one can hope...

One has to hope. Without hope there is nothing.

Friday, September 22, 2006

pain management?

I saw the pain management doc today.

He wants me to try the Indomethacin for 2 weeks to see if it is hemicrania continua in spite of the fact that I reacted badly to it and the Neurontin before. I told him I'll try it but I'm not taking it long term. The gastric bypass makes it a no-no for me because it's an NSAID.

He increased my Prozac from 20 mg a day to 40 mg a day. I've been on the lower dose for 8 years or so; maybe this will help.

I don't know...

I don't like his attitude. My daughter didn't either.

We'll see.

Tuesday, September 19, 2006

No sleep for the weary

I got a little nap this morning, and another short one about 10:30 or so, and now I'm up again.

The muscles in my neck are pretty tight. I can feel them. Maybe I'll see if I can get to the chiropractor tomorrow. That will help the muscles even if it doesn't help the pain.

I think all that tightness might be from bread-making.

When I feel good enough to do, I tend to overdo, and then I get sore. I should know better by now.

Maybe I'll get some sleep later.

Sunday, September 17, 2006

Sunday morning

Well, I was going to try to go to church this morning, but I'm up before 4 again in pain, so this dos not bode well for tolerating the sound and people that come with going to church.

I guess I'll stay home.


If the pain management doc can help me get this under control, maybe then I can at least go to church once a month if not more, and I know that will help. I feel so isolated sometimes...

Actually, more than sometimes...

Oh well, we do what we can with what we have.

Thursday, September 14, 2006

one step back

The new neuro referred me back to the old one.

I made an appointment with a pain management doc for next Friday afternoon.

I feel like a ping-pong ball.

It's okay.

I keep telling myself that.

Wednesday, September 13, 2006


I see the new neuro in 10 hours.

I'm worried about what she will say, what she won't say; what she'll do, what she won't do; what she'll suggest; what she'll want...

I worry about being in this kind of pain the rest of my life.

I can't sleep.


Thank goodness hubby is driving in the morning.

Tuesday, September 12, 2006


I am so tired of this pain I could puke.

I am tired of hurting all day, every day, like I have for the last year.

I'm tired of not sleeping for days and then feeling like all I do is sleep.

I'm tired of being grumpy.

I'm tired of living in the darkness.

I'm tired of spending my time alone because of the noises of others.

It gets wearisome.

Very wearisome.

Sunday, September 10, 2006


I decided to have my daughter and grandsons over today despite my pain level. Hubby and his buddy from work went to Mark Twain Lake to go fishing and the Sundays they do that it is a very long and lonely day for me. My daughter's hubby had to work, too, so she dropped him off and brought the kids over and we spent the day together.

They are growing up so quickly!

I paid for the day, though. My head is giving me fits again. The ringing in my right ear is becoming a distraction. It's louder than it has been, and now I'm noticing that when my pain level goes up, the ringing goes up too. Sometimes it's almost like a yell in volume if not intensity, if that makes any sense.

Again, I'm sleepless. I'm wide awake and hubby is snoring away.

I got one of the room-darkening shades made for the kitchen yesterday. If I can, I'll get the other two done tomorrow, and then we can hang them and it should help a lot. I'm making valances to match them as well so it will look nice in there. The front is a dark green stripe with roosters on it. It has fusible interfacing in the middle, and then the back is a mid-burgundy marbled color. It should make quite a difference in the amount of light that gets into the kitchen and thereby into my photosensitive eyes.

Thursday I go to the new neurologist. I'm not looking forward to the ride into the city. Traffic bothers me and I don't know if I'll feel up to driving, and hubby isn't the best when it comes to taking directions. I'll have to really look over the map again and make sure I know where we're heading so I can keep him posted ahead of time.

I have enough meds to make it till Thursday morning if I don't get a flare-up. I'm hoping this new lady won't be stingy with the pain medicine. I don't need a lot; just enough will do.

Saturday, September 09, 2006

up and up

My baseline pain level is up to almost 6 now. I wonder how much higher it will go.

Thursday I see the new specialist/neurologist. Maybe she has some brilliant ideas, or at least a suggestion for more effective pain management.

I'd like to be able to celebrate the holidays this year instead of sitting in my cave with my hubby while the family does other things. I had enough of that last year.

I guess that remains to be seen.

Thursday, September 07, 2006

do you suffer from chronic pain?

I am going to attempt to put together an anthology composed of stories related by people in chronic pain.

These stories will tell people about how we feel on a daily basis, what we do to cope, the good people we've met along the way, the struggles we've faced finding decent health care and understanding physicians, discrimination we've faced in the workplace from people who don't understand a sometimes-invisible disease process, how we've kept the faith through the pain, and anything else we want to share with the world.

I am hoping this will give those who read it some insight into the lives of people who struggle with pain each and every day of their lives, and whose pain may never go away.

I am asking for interested people to write and submit their writings for inclusion in this anthology.

Here's the email address I set up specifically for chronic pain stories. Please understand that by submitting something to this address you are implying consent for me to use these stories *without your real name* in an anthology that will hopefully be read by people and help further the understanding of those of us who live with pain on a daily basis. I will edit these stories, not for content, but for grammar and spelling. I will keep a list of all who contribute and you will get a copy of the finished product if you wish to do so. It may take a while to get this done, so don't expect a completed anthology next week.

Chronic Pain Stories

Thanks in advance.

Tuesday, September 05, 2006


It's hard to sleep when you can't put your head on the pillow.

I did manage to get a couple hours...maybe 3...and I've been up again since about 12:30.

The pain isn't horrible, it's just making it very inconvenient to try to rest. I put my head on the pillow and it just hurts. And I mean it hurts. The pressure is incredible.

So I got up to keep from keeping hubby awake with my restlessness and I've been watching TV and hanging out on the couch.

Maybe I'll get some sleep later.

I was going to try to keep the van today and go to the grocery store but on 3 hours of sleep that's not a good idea. I guess I'll have to make a little list for hubby and have him stop on the way home for the few things we need. That will save gas, anyhow. I'll have to cut the top of the milk carton off so he can see which one to get.

I'm glad he doesn't mind shopping for me. He's a good guy.

Monday, September 04, 2006


It appears I may not have what one doc was sure I had. He thought it was atypical trigeminal neuralgia, but I always kind of hesitated when I read the description of it. I wasn't quite sure that was what it was.

The other day my most recent neurologist mentioned a phrase again he'd used before, and I asked him to write it down. When I got home I looked it up, and the definition is so much like me it's scary.

It's called Hemicrania Continua, a rare form of chronic daily headache that almost always responds to Indomethacin. The thing is, Indomethacin is what is used to diagnose and treat it, and I can't take that drug. It reacts badly in my body. I swell up and get confused and incoherent.

Still, the thought that I have something with a name, and something I look at and say, "Hey, that's me!" is a good feeling in a way. I'm sure they have other meds they can give me to help with the pain. Other people are sensitive to that drug, too, and it tears up your stomach and most people can't use it for very long anyhow. I think the max is like 5 years.

I was really surprised to see that Yahoo has a group for this disorder. That was neat. I didn't think they would. I bookmarked it and if it turns out that's what I have I'll join the group. There aren't many people with this disorder and it would be good to even have just a few I can talk to about it. It would help with the feeling of being alone.

I was up early again with pain in my head, so I decided to give in and take half a Vicodin. I only took 1 1/2 yesterday. I'm trying to limit it now to only taking them when my pain gets to a 7. I remember when I took them at a 5, but then the 5 became a constant companion, and now it seems as if a 6 is where I'll level out, so a 7 it is.

It's amazing what we can live with once we accept that whatever it happening is just how it's gonna be. Sure, I could moan and groan, but that wouldn't do anything but make me and everyone around me miserable. I might as well make the best of what I have and do what I can when I can and then when I have to rest, I'll rest.

Adaptation is a good thing, I guess.

Saturday, September 02, 2006

A letter I sent

To whom it may concern:

I have been diagnosed with atypical facial pain, allodynia, occipital neuralgia, and chronic migraines. My PCP is Dr. M***, and I see Dr. M** B****, a neurologist at ***** Hospital, but because I live in *****, when I have breakthrough pain that is not controlled by my medication, which is at this point Vicodin ES 1/2 - 1 every 4-6 hours as needed, I went to your emergency room for treatment because it was close and I had been treated well there in the past.

In the past I have received 2 mg of Dilaudid and 50 mg of Phenergan IM for this breakthrough pain and it has been effective. Until recently, there were no problems getting treatment so that my pain was at a manageable level. By this I mean bringing it down from an 8-9 on a 0-10 scale to a 4-5.

On Tuesday, July 1, I went to the ER. The staff declined to put me in one of the rooms in the back, putting me instead in a curtained area despite my informing them that I have hypersensitivity to sound and light when my pain level gets to this point. They also left me sitting in the waiting room with the TV volume up and people talking loudly despite me asking if there was anywhere else I could wait. The doctor I saw that day was less than compassionate. The only reason I got the medication I needed was because I insisted on it.

On July 12, I returned to the ER. This time, the physician - the one who had seen me the time before - once again made an issue about the dose of Phenergan and tried to have the nurse give me a lesser dose without informing me that there had been a change. They put me, once again, in a curtained area, and on the other side there was a child getting stitches in his face, which I understand happens in an ER, but they also told me when I asked for a room that there were no rooms in the ER, only curtains. Now I've been going to this ER for over 6 years and I know better. The physician never even saw me until after I got medicated. He never listened to my heart or lungs. He never touched me.

Tonight, September 1, I found myself in need of the emergency room once again. I have been fighting returning to this ER for 4 days because I remembered the treatment I got the last 2 times I was there and was concerned about things getting worse. When I got there this time, I overheard one of the nurses making a snide comment about me. See, one of the side effects of this disorder is that I have very sensitive hearing. I've overheard staff talking about me in a derogatory manner more than once. They put me in a room, and when this male nurse came in and asked me what I'd done for the pain, and I told him I had seen the neurologist today and that I had an appointment at the W*** clinic on the 14th, he remarked that I had told him that the last time he took care of me, rather like he didn't believe me. The doctor, this time a different one, came in and showed no consideration at all for the fact that I am increasingly noise and light sensitive when my pain levels are high. He informed me that he was not giving me what I had requested, but rather Toradol, Benadryl, and Phenergan. I told him that Dr. B**** had told me to have them call if they had a problem with the meds, and he said he'd call, but he wasn't giving me narcotics if I was taking narcotics already. Despite me telling him that I had pain on the right side of my face, he insisted on palpating my neck in a manner that induced me to cry out in pain, at which point he asked, "Did that hurt?" I don't ususally yell if I'm not in pain.

I have been an RN for 15 years, and I know some things about chronic pain outside of what I've experienced on a personal level. I know that people on narcotics for chronic pain are often treated with other narcotics for breakthrough pain. If the pain is bad enough that Vicodin doesn't help, then it is highly unlikely that Toradol is going to help, especially if it hasn't helped in the past.

I chose not to stay and be treated by someone who obviously thought I was engaging in drug-seeking behavior. It is humiliating enough to lose a career and my independence due to this situation; I don't need to be looked at as less than anyone else simply because I am in pain 24 hours a day, 7 days a week, and have been since October of last year.

I will not be utilizing any of your facilities in the future if this is the kind of behavior you accept and condone from your staff and doctors. It violates the patient bill of rights that states:
"Respect and Nondiscrimination. You have a right to considerate, respectful and nondiscriminatory care from your doctors, health plan representatives, and other health care providers."
"Complaints and Appeals. You have the right to a fair, fast, and objective review of any complaint you have against your health plan, doctors, hospitals or other health care personnel. This includes complaints about...the conduct of health care personnel..."

In the future I will choose another non-affiliated facility for any necessary visits, even though it most certainly will involve more travel and a longer wait to be seen and treated. I did not deserve the treatment I received at your facility and I will not tolerate it any more.

Me, RN

Friday, September 01, 2006

I recognize this song...

The words go like this...

Be thankful you got 3 hours of sleep. It could be worse.

I'm sitting here in the dark with my sunglasses on because the light from the monitor hurts my eyes.

I want a different radio station.

Thursday, August 31, 2006


The pain won't let me sleep.

I sometimes would just like 5 or 10 minutes without it, but then I know better...I'd want more, and more, and more; or is that less, and less, and less?

I'd like to wake up pain-free and stay that way is what I'd like.

God, I know you're holding my's just that right now, I don't feel it very much.

Wednesday, August 30, 2006


2 days till I see the neurologist again.

2 days till I start on Methadone.

I hope it works.

I'd like to be able to work, even if I can't work as a nurse. I don't care. I'd just like to not hurt all day, every day.

I'd like to be able to open my blinds again and leave them open all day if I want to.

I'd like to be able to visit with my kids, fly to Florida and see my grandbabies there, and visit my mom and siblings.

I'd like to celebrate Christmas with a nice dinner and presents.

I'd like to be able to go to church.

I'd like to have my life back, even if it has to be modified.

I'd be more than willing to retrain for another career if the disability people wanted me to, if I can get to where I can work. I know as a nurse I can't work if I'm on narcotics. It's against the law. There are other jobs I could get, though, where I can work in spite of the pain meds. Other people do it.

If I could get financial assistance for school, I'd love to go back and become a certified interpreter for the deaf. I've always had a fascination with sign language. I think it's phenomenal that the entire language developed the way it did. I know some of the basics but I'd like to become fluent and be able to interpret for people who need that intervention.

Maybe some day I'll realize that dream.

Tuesday, August 29, 2006

here we go again

Apparently the sleeping all night thing wasn't meant to be.

It was nice to hope, though.

Still, here I am, up again, in pain, taking more medicine and thinking maybe this time it will kick in and I can go back to sleep instead of being up till after hubby leaves for work.

I guess we'll just have to see.

Monday, August 28, 2006


I'm so tired of posting how much I hurt; but I hurt.

All the time.

Today has been especially bad and I don't know why. I do know that I've done a lot of sleeping to try and keep from calling hubby and telling him to come get me and take me to the ER for another shot. I'm almost to the point where it doesn't matter if it disrupts his work day or not.

I hate this.

Saturday, August 26, 2006

found some help

I am hypersensitive to light. It makes my head hurt.

Yesterday I bought 2 new room-darkening shades and we found an old one we had purchased and then not used out in the garage and now the kitchen has been darkened. It's much better because these blinds don't just filter light; they keep it out. Or at least, they keep out more than the other blinds did.

Those blinds are still in good shape so we're giving them to my oldest daughter for her mobile home. The blinds they have there aren't in such good condition.

I also ordered, earlier this week, these sunglasses called "Fitover" sunglasses. They do just over prescription glasses. When hubby found out I was getting some for me, he asked for some for him, too, so I ordered a pair for both of us. They arrived yesterday.


I can go outside in the daylight and not feel like my head is going to explode from the intensity of the sunshine. I fed the fish and the sun was reflecting on the water and it was okay. It's been a long time since I could do that while the sun was still relatively high in the sky.

These glasses have little side lenses, too, so the sun doesn't grab you from beyond the edges of your frames, and they have the things that keep the sun from pouring in over the top. I am really glad we invested the money in them. I have to keep the link I got them from so if I ever need another pair I can get them.

Hubby is pleased with his as well. I sent a letter to the company thanking them for making such a good product.

My head hurts today about the same as usual, but I'm trying to take it really easy so I can spend some time with my grandsons this afternoon. They're a special part of my life and I like to be with them whenever I can.

Friday, August 25, 2006


I got blasted today by someone who obviously feels like I spend too much time on the computer.

Obviously they don't understand that it is difficult for those of us in chronic pain to leave the house on a daily basis, much less work. They don't know that I'd far rather be up and about, doing and being and going, than to be here in the semi-darkness 23 hours out of the day, if not more.

It infuriates me.

It frustrates me.

It makes me want to shake this person and tell them I'd gladly trade ALL their "troubles" for mine any time, any day.


Thursday, August 24, 2006

drugs work wonders

I've found that if I take 1/2 a Vicodin and 0.5 of Xanax about half an hour before I go to bed I do better. Last night I slept from just after 11 till almost 5:45 this morning. Mind you, it's not a steady thing; but at least last night it worked.

I called to make sure the Vicodin refill is at the pharmacy. It is. Hubby will pick it up on the way home today. I'm not feeling up to going anywhere other than from one end of our mobile home to the other. Going shopping with my daughter yesterday probably wasn't the wisest decision I've ever made, but I can only stay home so many days without getting cabin fever and feeling like there's nobody else on the planet.

I did hurt badly last night but fought the urge to give in and go to the ER. I really don't like going there. I don't like how the Dilaudid makes me feel. I get all weird and stuff. I'd almost rather hurt.

Today so far I'm running at about a 6. Hopefully it won't get any worse.

Wednesday, August 23, 2006


I actually got some sleep last night. It was nice.

I took half a Vicodin around 8:20. We headed to bed at our usual time right after the news. I stayed awake till around 11 - I remember hearing the clock chime - and didn't wake up till just after 2. I came and got another dose of medicine and decided to go lay back down. Amazingly enough, I fell back asleep and didn't wake up till hubby gave me a good morning kiss around 5:30.

I feel almost human again.

Yesterday I had to cover the kitchen windows with sheets to block out the light that comes through the blinds. They're light-filtering blinds, not room-darkening ones. I'll have to rectify that. I was thinking of making Roman shades but they're a lot of work and I get the feeling hubby is going to balk at putting any more holes in the walls, so maybe I'll just stick with the blinds and then make some lined curtains and put tiebacks on them so on the afternoons when my photosensitivity is bad, like yesterday, I can just release the tiebacks and block out the light. I'm going to make some lined curtains for the living room, too. We have some of the cheapy drapes from WalMart but for what I paid for them I can get some decent fabric that I like and will be unique and whip up some that will meet our needs a little more competently.

We're rearranging the bedroom to accommodate my sleeping needs a little better. We switched bed sides so that I can lie on my stomach and face out instead of facing hubby's back, which blocks the airflow that I so desperately need when I hurt, and this afternoon when he gets home from work he's going to move the dressers. I'm going to try and get a head start on that by taking the drawers out and knickknacks off so that they will be lighter. He's fussing about it but he'll do it, knowing it will help my peace of mind.

Next week we go for the Methadone...I'm just trying to breathe my way through till then. I've had the feeling I might need to go to the ER again for a couple days but I detest the thought of running into the jerk doctor so I fight it off. If it gets bad enough I guess I'll just have to bite the bullet and pray he's not there.

Tuesday, August 22, 2006

making no progress

I'd like to know why I can't sleep more than a few hours at a time, and why when I do get a bit of sleep I wake up hurting more than I did before I fell asleep. It almost makes me leery of even trying to sleep all night when it hurts to much to get 4 1/2 hours of sleep.

My ATN pain is traveling. It's in the top of my cheek today and the past few days it's been in my lower jaw area almost like someone had an air gun and was shooting the air into my teeth. I know that's not very clear but I don't know how else to explain it.

The Rozerem didn't work. I had a paradoxical reaction to it.

Hubby is taking next Friday off so he can go back to the neuro with me. I'd like my older daughter to take me but she has not-fully-charged AC in her van and we may have had to take all 3 boys and I just can't deal with that right now. Maybe if she gets the AC recharged by the time of my next appointment she can take me then.


My head hurts.

That's what I get for sleeping.

Saturday, August 19, 2006

drugs = ? me = 0

So last night, after giving myself 24+ hours to clear the Trileptal out of my system, I took one of the new sleeping meds they're advertising on TV - it's called Rozerem. I got samples from my neurologist.

I took it at 9:30, brushed my teeth, and went right to bed.

At 11:30 I got up, still wide awake.

At 1:45 I went back to bed, and finally fell asleep around 2:30.

So much for sleep.

Hubby didn't eat any breakfast because I didn't get up, even though I told him where the cereal was just in case he couldn't get me to wake up - not that he isn't perfectly capable of making his own breakfast, but he's not a breakfast person and if I don't make it, he'd rather not eat. He's diabetic, though, so I worry about him if he doesn't eat and then goes to work. His sugar was 128 though so he should be okay till his lunch break.

It looks like we'll be hitting the Methadone when I go back on the 1st of September to see the neurologist.

Oh well...

At this point any relief would be welcome.

Thursday, August 17, 2006


the trileptal is bad news

tingling in hands and feet
trouble with words
stupid feeling
very emotional
trouble walking
louder ringing in ears
crying in the middle of the night
afraid to be alone
freaky dreams
whacked out

no more of that

guess it's on to the Methadone in a couple weeks

Wednesday, August 16, 2006

day 1 of trileptal

nothing significant to note. still sleeping when i should be awake and awake when i should be sleeping. no stupid side effects yet, but it's early. wish i could close my eyes and sleep in my bed when it's dark and stay awake in the day time but that's not happening right now.

trying something new(er)

The doctor visit went well. We talked about the progression of my pain and how the Vicodin isn't working as well as it did before, partly because the pain is more frequent and intense. I let him know again about the ringing in my ears, the sensitivity to sound and light, and the need to hit the ER for shots.

He wants me to try Trileptal and see if it helps.

He also gave me that new sleeping pill called Rozerem to try, but I can't start that till I've been on the Trileptal for a few days so I don't get side effects confused.

If the Trileptal doesn't work, we're going to try the Methadone. He was open to talking about it and says it may do the trick; he has other patients who take it and it works well for them.

So, we'll give the new(er) med a try and see how it does. I'm open to just about anything at this point.

Saturday, August 12, 2006

finally got some sleep...

...after a trip to the ER.

I don't like this ER doc. He tried, again, to give me just 25 mg of Phenergan instead of 50. What's the big frickin' deal? I wasn't asking for tons of narcotics, just something to help with the nausea the Dilaudid gives me...obviously the man has no concept of what it's like to be in chronic pain with an acute flare-up. When we arrived at the ER my BP was 156/108. It went higher...up to 174/110 or close to that, anyhow.

They finally gave me the whole dose of Phenergan after I told them to send him in so I could talk to him. I reminded them that I get very nauseated when I take Dilaudid, and that every time I go in, they give me 50 of Phenergan because that's what works.

The pain was worse than I can ever remember it being. I was sitting in the ER crying like a baby. Thankfully hubby was there...he talked to me and reminded me to breathe and focus and helped me with what might called guided visualization - whatever you call it, it works some...telling me about things they find in the tummies of tiger sharks - they're kinda like the goats of the shark family. They've found hubcaps, beer cans, all kinds of interesting things. He was watching the monitor and every time the machine took my BP and pulse he'd tell me what it was and then tell me which shark tooth pattern the pulse ox measurement looked like...tiger shark, then mako, then a circular saw blade...

I see the neuro on Wednesday. It can't come soon enough.

At least after the shot I got some sleep. I think I slept 4 hours. I don't want to sleep any more or I'll be up all night again.

The Dilaudid is still working. I haven't taken a pain pill since I get home and I don't feel like I need to yet.

another sleepless night

I took a nap yesterday morning and another short one yesterday afternoon. I've been awake since then. I can't sleep, and when I do fall asleep, it's not for long.

The pain meds aren't working like they used to. It's time for a change.

Onward ho...

Friday, August 11, 2006

what's going on?

The past two days have been bad for me. I feel like I'm eating the Vicodin like candy. I've slept more at night because I'm so exhausted from not sleeping, and then when I wake up I hurt so bad I can barely stand it.

When this all started it took me almost 5 months to go through 30 Vicodin. Now I'm taking between 2 1/2 and 3 1/2 a day. When will it stop?

I'm hoping to discuss trying some kind of scheduled pain medicine when I see Dr. B next week. This "as needed" thing is getting ludicrous...I need the med all the time.

It's not like it was; the intensity is increasing, and it's really taking its toll on me psychologically as well. I feel housebound and that bothers me. I can barely go out to go to the grocery store without feeling wiped out. I don't go visiting family. We don't go to the movies or out to eat.

This morning it took everything I had to eat. My face hurt so bad I didn't want to even put the spoon in my mouth, but if I take the meds with no food, I get sick.

This is certainly no fun.

I was talking to hubby last night and told him I wouldn't wish this on anyone. And, truth be told, I mean it. There are people in my life who have caused me a great deal of pain, and even they wouldn't deserve this. Nobody deserves to hurt like this, all day, every day. Nobody.

I'll have to go shopping Sunday morning. I don't go to the store on Friday nights or Saturday afternoons. It's too busy.

I hurt.

Monday, August 07, 2006

feeling defiant and paying for it

Yesterday I swept and mopped the kitchen/dining room and the guest bathroom, washed the rugs from that bathroom, and washed the extra pillows hubby brought in from the car we're going to try to sell. I finished the quillows for the twins. I did a tiny bit of shopping. I'm tired to death of feeling like crap and letting it make me lie like a slug on the couch all day, every day. I chose to do what I felt like I needed to do in spite of the pain.

I decided last night I was staying in bed whether or not I slept. I did get about 5 hours, but I hurt this morning because it had been several hours since I had a pill.

I got out the vacuum this morning and did the living room. I rearranged the furniture and dusted the whole thing. I did the hallway, and then I got our bedroom and bathroom. I pulled the sheets and put them in the washer.

I moved some of the sewing stuff into the guest room, rearranged the sewing room a little, and made it a combination fabric storage room and play/sleep room for the boys. That allowed me to get the toy box out of the living room.

I had to move the cat food and water dishes to make room for the sewing machine, which I moved back into the kitchen/dining room because I'd rather sew in here anyhow, and that way I can spend time with hubby while I'm sewing.

I took a shower because I was all sweaty and stinky.

Now I hurt.

I overdid.

I may have to take more medicine, but a clean house is way worth it.

I won't be doing this much again for a while, but sometimes you just have to say "screw the pain" and do things anyhow.

Now I can take a nap.

Sunday, August 06, 2006

past frustrated

It's 3:45 in the morning.

I'm still awake.

I just took another half extra strength Vicodin and a whole 0.5mg Xanax.

Hopefully some time today I can get some sleep.

I am past frustrated. I was frustrated 4 hours ago.

Saturday, August 05, 2006

occipital pain

I'm noticing that I'm getting more occipital pain than I used to. I'm not sure if it's part of the progression of the disorder, if it has to do with stress, or if it's just as random and obnoxious as the ATN is.

I do hope that when I go see the doc on the 16th he will be amenable to a different course of pain medication, since this one isn't doing as well as it used to. Again, I'm not sure if that's because the pain is stronger, if I'm developing a tolerance to the meds, both, or what.

What I do know is that I am beyond ready for all this to stop, but I see no chance of that happening any time soon, or ever...

What a nasty little disease this is.

Friday, August 04, 2006


you are my constant companion
with me each moment of every day
never ceasing to remind me
of the fragility and the preciousness of life

the pain you have given me
drives me to cherish the smallest things
the times with my loved ones, now all too infrequent
touching my life in a deeper way than ever before

I have questioned myself, my motives and actions
trying to discover the root, the cause, the reason
only to find that you are as random as the wind
striking whom you will, where you will, when you choose

there is no preventive measure I could have taken
there is no cure in the annals of medicine
only a hope for relief from the constant pain I live in
a hope that drives me to try yet one more medication, one more treatment

to spite you, I will not give in to depression
I will not let your presence steal from me who I am
instead, I will make the most of each second I've been given
and in the hard times, I will cling to that which is good

you will not win
you will not take my life
you may grab at my livelihood, my possessions, my ability
but who I am will always shine through the pain

torture me if you must
leave me writhing in agony, crying out for relief
still my spirit will be there, fighting you
I will fight you with my last breath

I will not give in to you

Wednesday, August 02, 2006

pain bites

We took another trip to the ER last night.

It's amazing the things you notice when you go there at different times of the day and evening. The day crew tends to not be quite as grumpy. The doc I had last night was loud and bordered on obnoxious, trying to insist he do an exam of my tummy and liver before I got my shot. I told him I couldn't lay on my back...the back of my head was pulsating. He talked like I was deaf. Then, in spite of me telling them what helps me when they asked, they tried to get by with half the amount of Phenergan. Sorry...I know what the Dilaudid does to me, and how nauseated I get with it. I told the nurse to get me more unless she wanted me puking on my way out the door.

It took a bit longer to kick in last night, and didn't last quite as long, but it did what I needed it to helped me relax enough to sleep and not care how much I hurt.

2 weeks till I see the neuro again...

I've already started the pain meds this morning. I'm hoping today will be better than yesterday was.

Tuesday, August 01, 2006


Son of a bug, my head hurts today!

I've been experiencing increasing levels of pain since this whole mess started and I'm not sure if this is weather-driven, stress,driven, or if it's just part of the disease progression, but if it doesn't calm down soon I'm going to have to go get another shot.

I hate thinking of it. That's another chunk of money we don't have.

However, I can't walk around like this all the time, either...or should I say I can't sleep my life away, not caring what time it is, or who may be around, or what may need to be done...

Sunday, July 30, 2006


I'm getting used to not sleeping all night. This is the 4th night in a row I've been awakened by the pain in my head rising to a level that demands medicine. I think hubby is getting used to it, too...he didn't wake up when I got up this time like he usually does.

I'm forgetting things...I'm not sure if it's from the stress from the pain, or the meds, or a combination of the two.

I'd like to sleep for more than 5 1/2 hours again...I'd like to wake up pain-free...while I'm at it, I'd like to win the lottery, too. It seems I have an equal chance at all 3 of them.

Friday, July 28, 2006

can't sleep

I was up before dawn this morning, and now I'm up way past my bedtime. I did take a whole Vicodin at 9pm and tried to lay down, but it just wasn't working and since hubby has to be up at 3 to go to work, I figured I might as well get out of there and let the poor man get some sleep.

I'm getting past frustrated at the way this pain is progressing. It's getting stronger, and the surges come more frequently. Will it ever stop doing that?

My days and nights are all skewed because I spend half my day asleep trying to avoid the pain and then I can't relax enough at night to get any rest.

Chronic pain bites.


I can't even sleep a whole night any more without waking up in pain. The last 2 nights I've been up before 4 am with this wonderful throbbing that drives me right to the medicine cupboard.

Stupid me...I thought the 24 hours a day, 7 days a week was all it was going to be. I hadn't figured on it getting worse. I kept thinking, in my smart old RN brain, that I wasn't going to be one of "those people" who got dependent on pain meds.

Now all I do is count my pills and make sure I have enough to last till the next appointment, and pray to God that when I run out, which I will, that they'll give me a refill again.

The Vicodin isn't doing what it used to do. I don't know if I've built up a tolerance or if the pain is more severe...wait, yes, I do know. My pain rarely goes below a 4 any more. When this all started, it was sitting at a 2 or 3 most of the time and 30 Vicodin lasted me almost 4 months. Now I'm hurting enough that 30 won't last 2 weeks.

My poor hubby is beyond himself. He's trying to understand...he keeps getting the ATN mixed up with the killing migraines I used to have, and I guess we need to talk again so I can explain that the flare-ups aren't migraines, or at least most of the time they aren't...they're just - hell - flare-ups. I can tell he's worried sick about me. I wish I could make both of us feel better.

Now I'm fielding phone calls from bill collectors; since our income went in the toilet, I had to have the cell phones shut off, and the fines they impose for early termination have left us with a bill of over a grand, and they want it NOW. They don't want to take what I can send when I can send it, and I ended up hanging up on them twice last night. I cannot guarantee them any certain amount a month. I send what I can when I can. Last month it was $65, this month it may be $50. They can't be happy about that.
The hospital hubby had his emergency appy at wants their $735 NOW, too. We applied for financial assistance for that and the files reflect they got the papers...however, while we're waiting for it to be processed, they sent it on to collections, too. I yelled at them the other day. I told them it's ludicrous to treat people like that and not even let them know what's going on. If they deny us, fine...they'll get the money when we have it, like the cell phone people.
I'm sorry...the mortgage, utilities, and transportation-related expenses come first. Hubby has to have the van to get to work. We also have to eat. My car sits in the garage waiting for someone to buy it either for parts or so they can rebuild the transmission. We don't have $2500 we can pull out of the air to have it fixed. I'm doing the best I can.

I keep trying to remember that, according to the Social Security people, I'm only impaired, not disabled...

Yeah right.

Thursday, July 27, 2006


6 hours seems to be the longest amount of time I can go without pain medicine now. The pain will wake me up if I'm asleep. It's 3:45am and I'm wide awake, head pulsating, pulse and breathing rapid. I took 1/2 a Vicodin and I'm hoping it kicks in soon.

It's days like this when I wonder if I will go through this for the rest of my life, counting the hours between pain pills and trying to make it on the least possible dosage I can. Sometimes I'd just like to take enough not to hurt, but I'm afraid; afraid of becoming an addict, afraid of being stupid, afraid of hurting myself or someone else - not intentionally, but because of the effects the drugs may have on my system.

I'm hoping maybe the people at the Barnes clinic can help shed some insight and give me some ideas on how to better cope with this mess.

Hopefully I can get a little more sleep once the meds kick in. I need to go grocery shopping today.

Wednesday, July 26, 2006


I'm fighting again with my neurologist. He seems to think it's illogical to prescribe more than 30 Vicodin at a time, which means in 10 days I'll be playing the "I need a refill" game again. It's pure torture to orchestrate getting my meds refilled. I have to call the pharmacy, wait for them to fax the doc, usually twice because they tell me over and over they never got the first fax, then wait till they get good and ready to fax the order back. Why can't I just get my meds when I need them, in a quantity sufficient to meet my needs?'s not like I'm abusing them. Using 2 or 2 1/2 Vicodin a day is not indicative of addiction. I'd like them all to feel what I feel for a while and get an idea why I need this medication. Instead, I get to feel it, and fight with them to get what I need.

It's been a bad couple days. My pain level is higher and I just flat hurt. I am really getting tired of this. All I (let me rephrase this) feel up to doing is sleeping. All I want to do is not hurt. I get up, take a pill, drink something, crash back on the couch, cover my eyes to keep the light out, and pray for relief till it's time to take another pill. What an exciting existence!

I'd cry if it didn't make my head hurt more than it already does.

Friday, July 21, 2006


I used to count my time by looking at the days I worked, or when I was off.
Now I count the hours between pain medications.

I used to run through the house opening blinds and pulling back curtains to let the sunlight in.
Now I keep them drawn and the house knows more darkness than light.

I used to yearn for the company of others and enjoyed a good noisy church service with loud praise and worship.
Now I turn on the captioning on the TV so I can see the words I can no longer stand to have loud enough to hear.

I used to love working in my garden or mowing the lawn for hours on end.
Now I stay indoors or put on sunglasses and a hat to keep the light from my eyes.

I used to hit the malls and stores on a frequent and regular basis.
Now I try to limit my trips to stores to only necessary ones.

I used to love to just get in my car and drive anywhere, everywhere.
Now I have to plan my journeys to minimize my exposure to stimulation and stress.

I used to fight going to sleep.
Now I lie for hours on the couch and pray for the sleep to come so I can get a break from the pain.

My life is no longer what it was.
I'm not sure what it even is any more.

Chronic pain has robbed me of many things.
It will not take away my family, even if I am drugged when we visit.

Thursday, July 20, 2006

overdid it

We've had company the last week and last night I ended up in the ER again for a couple of shots. I fought it for 2 days and finally I couldn't put it off any more so we headed into town about 9.

I'm not sure if doing too much triggers it, or being tired, or stressed, or if it just does what it wants, when it wants.

Hubby's so good to me...I know he worries about the pain and the fact that every time I have a flare-up the pain I'm left with afterward is higher than it was before I got the shot. He's very supportive and has indicated more than once that if he could, he'd take the pain from me.

The ER was busy - or as busy as they've been in a while in the small town we live near - and we had to wait in the waiting room, which about killed me. People just talk so loud and we've adjusted the volumes of things in our home so that they don't aggravate my pain; the TV was way up; there were cell phones ringing and one guy, bless his heart, probably couldn't have whispered if he wanted to. After they called him back the lady in registration turned the TV off for us. That helped some.

I took one of my pillows with me. It's comforting to have something familiar in a place like that and I don't like their pillows, anyhow.

This makes 3 times in as many weeks...enough is enough.

Thursday, July 13, 2006


My head is misbehaving badly today. I'm really getting tired of this. I think it's because I went to the store and then stopped by my daughter's house so she could use the car...I did too much in one day. I have to start being more careful and monitoring my activity more closely.

The Vicodin seems to be losing its effectiveness. I'm not sure if I'm becoming used to it or if the pain is changing character. I just know it doesn't do what it used to. This concerns me.

I need to go take a nap and try to sleep off this pain.

Tuesday, July 11, 2006

another level

I had to go to the ER again yesterday. I'm getting tired of this.

I remembered to ask for the Phenergan this time. It helped. I didn't get nauseated at all.

The feeling when the drugs hit my body is a strange one. My butt gets warm and then it kinda spreads up and around until it hits the pain in my head and I don't mind so much that it hurts any more. I'm not sure if it takes the pain away or not. What I do know is that I don't feel much of anything except maybe what it would feel like to be drunk...I don't know because I've never been drunk.

Today I've taken 2 doses of Vicodin, each one half a pill. The residual pain is now a solid 4 with twinges up to a 5. Considering I started around a 2 or 3, this isn't good.

I'm looking at maybe having to severely limit my driving or stopping altogether. I can't go much above 45 without feeling like I can't control the car if something happens.

It could be worse...I know it could.

Monday, July 10, 2006


Today I'll be on the phone at 8 calling the doctor's office to get my refill called in. I have one pill left. One. I take between one and 1 1/2 a day now because of the pain level I'm at.

I'm awake early again, already going at it because I know I have to deal with this today. I'm just hoping the doctor doesn't give me any crap about my medicine. I't not like I'm taking it for the fun of it. I'd much rather be well, able to work, up and about and like I used to be. I hate being like this. It really bothers me.

I'd give just about anything to be able to sleep on my right side for a whole night.

Saturday, July 08, 2006


I had to cancel plans again today. I don't have much Vicodin left and I need to save it for when I really need it. I hate this.

I was hoping the doc would call in my refill like the office said he would. What will I do if he doesn't? Fire him and get another doc? What do I do in the meantime?

I'm frustrated.

Friday, July 07, 2006

day off, or off day?

Anyhow, I don't have much to do today. This is a good thing, since my head is killing me. I do need to go shopping and I'm dreading it. I also need to check the mail and send a few things out. After I get done with that, I'll be on my way home, where I will take a pain pill and sleep the afternoon away.

I don't like the dreams the Xanax gives me, but I like to sleep, so I guess it's a trade-off.

I need to check and see if they called in my Vicodin refill yet.

Ouch. I can't think very well this morning. It's probably a good thing I don't have a lot to get done, or I'd screw it up.

Thursday, July 06, 2006


I called the doctor's office yesterday to make an appointment. I can't get in till the 25th but they told me they'd approve a refill on my Vicodin to get me through. Now I'm waiting for WalMart to let me know the drugs are there. I don't want to run out. That's a scary thought with the amount of pain I've been having. I'd end up right back in the ER, and that's not a cheap proposition.

I was feeling a little closer to what normal used to be yesterday until about 5:45 pm, and then all hell broke loose again. I got sore, and I hurt, and the boys knew it, and they were pushing me, and I was just flat out miserable. I hate it when I feel like that when they're around. It's not fair to them.

I miss being able to drive over there, but if I do, I barely have the energy to watch them, and I don't want to take any chances. It's safer here, and hubby gets home just over 3 hours after they get here, and if I need him, he'll stay in with me until it's time for them to go to bed. He's good like that.

I miss work.

I miss my life.

Tuesday, July 04, 2006


I have very sensitive hearing.

This has an interesting effect on my headaches.

When my head starts pulsating, and the pressure goes up, I can hear every tick of the clock in the living room and the one in the kitchen, too. I can hear the little squeaks in the motor of the ceiling fan. I can hear the timer on the dryer. If you add this to the constant tinnitus, which gets louder when my head hurts more, it's understandable how I don't want to be around anyone when I'm in pain. I hear way too much as it is.

I've always been hyper-sensitive when it came to sound. It was murder on my kids when they were little. I heard things they didn't think I could hear. They probably got in more trouble for it, too.

My sense of smell is acute, too. I'm not sure if it's multiple chemical sensitivity or if it's just an acute sense of smell, but sometimes the smells make me physically sick. It's one of the reasons I don't go to the mall on crowded days, and I tend to stay away from big churches and places where people might be who like to marinate in their aftershave or cologne/perfume/body splash. The intense smells, mostly floral and woodsy in fragrance origin, can give me violent diarrhea and nausea. Yeah, I's a lot of fun.

My photosensitivity is getting worse, too. It's part of why I rarely open all the blinds in the house now. I can't stand all that light. It hurts my head.

I need an ultraviolet-filtering, quiet, non-smelly bubble over my home.

Yeah, that's the ticket.

That and a cure for my headaches is all I ask.

Monday, July 03, 2006


Apparently I have some nerve damage in my face in addition to the other stuff going on. The old-fashioned TV sets, the ones with picture tubes, had a high-pitched squeal to them that sometimes got louder the longer they were on. I have the sensation that someone took one of those sets, disabled the on-off switch, left it in the on position, put it inside my head, and then took off forever. I live with a constant ringing in my ears that gets louder when and where it chooses with no rhyme or reason.

If you add this to the pain I deal with all the time, it makes for quite a charming situation.

I need to call my neuro today and see if I can get in some time this week. We need to have a talk about pain medicine.

Again, my dreams of waking pain-free were dashed. I'm putting off the Vicodin as long as I can. I need to do some errands this morning. I don't like driving after I take those pills. I guess I'll pop a couple extra-strength Tylenol and see if they put a dent in it for me at least until I get home.

The Xanax interfered with my dreams again last night. I just love those dreams of going and going and never getting anywhere...

Sunday, July 02, 2006


I wake every morning hoping that somehow, by some unknown cause or miracle, the monster inside my head would have fled for greener pastures during the night, leaving me pain-free and giving my life back.

Alas, today seems no different than yesterday. It is still with me.

The all-too-familiar pulsating begins and strengthens, and I find myself driven to the medicine cabinet once again to partake of the narcotics I despise yet desperately need. Trust me; if I could, one day, awaken pain-free, the bottles would be emptied into the toilet in a heartbeat, never to be thought of again. At this point in time, though, I depend on these drugs to keep my head pain at a level that is just short of screamingly intense. I don't want another trip to the emergency room. I hate what the shots do to me more than I hate what the narcotics and anxiolytics do to me. I don't like having to depend on drugs to keep me sane while, at the same time, they steal more of who I am by limiting my thought processes, my independence, and my ability to earn a living.

I've seen the addicts. I've administered the Dilaudid dose - the one that knocks me on my ass when they give it to me in a shot into my butt - through an IV line, along with some Phenergan and Benadryl, and seen the patient who got it casually stroll down the stairs 10 minutes later to suck on a cigarette. I've seen the ones who demand you give it quickly and curse you when you won't, because they are thereby denied the head rush that fast IV push drugs bring. I WILL NOT GO THERE. If I'm feeling bad enough to take narcotics, I take them, and I go to bed, or lie on the couch. I don't function well enough to trust myself when I'm under their influence. If I'm in that much pain, I don't want to eat, or drink, or do much of anything.

In a few minutes here I will be downing another half Vicodin, extra-strength. I don't want to take it, but if I don't, the chances are I'll have to take more later, or we'll be flying down the highway, me with a towel over my head to block out the searing light, on our way to the emergency room for another dose of the far-more-potent drug I'd rather stay as distant from as I can.

I hate this.

Saturday, July 01, 2006


I got up with hubby today after a decent night's sleep assisted by Vicodin and Xanax. I made his breakfast, made sure he was ready for work, and then, before he left, I was out the door and on my way to the grocery store. I figured I might as well get it over with while I still felt relatively okay and the weather was still cool.

I was there, got the shopping done, and got home before 8. Now most everything is put away and I'm relaxing a bit before I take a pain pill and get some more rest.

I think I'm coming to accept that the medicine and the need for it is not going to go away. I'm not happy with it, but I'm accepting it. I just hope my doc doesn't have a fit when he finds out I need more than what he probably thinks I should be taking. Since the attack on Monday I just can't get through even a day without it, and most days I'm taking at least 2 doses. I don't know what else to do. I do know that I hurt more, and still all the time, and we need to look into doing something that will help with that so I can at least function here in the house. If I have to stop driving, fine. I can deal with that now. I don't go out much on my own, anyhow.

The pain is coming back so I'd better go take more drugs. Ah, the story of my life...maybe I'll sleep through The Matrix again.

Friday, June 30, 2006

can't think of a title

I'm in semi-darkness today. My eyes are bothering me.

I just took a Vicodin again. I only took one yesterday. It was really constipating me and I needed a *break* day so I could let the stool softeners do their thing. I couldn't hold off any longer, though. The pulsating feeling is winding up again.

I'm supposed to have company today. I'm seriously considering putting a note on the door telling them it's a bad head day and to come back another time. I'm wondering with part of my brain if they'd be offended and with another part of it I don't really care. I just want peace, and quiet, and no crying or fussing or demanding kids, and no pressure to be sociable.

The sink is filling up with dishes. I can't decide what to make for dinner. I'm not functioning well today.

I did manage to fold a load of clothes, put a load in the dryer, and put one in the washer. At least I can keep up with the laundry. Forget running the vacuum. My head just might explode at that one. Maybe I'll get to the dishes later, too.

For now I'm heading back to the couch to continue my backwards evolution into a potato.

Wednesday, June 28, 2006


It's hard when you get to the point where you have to start giving up your independence in slightly bigger chunks. It's tough giving one of your grown kids a shopping list and the debit card so they can go buy groceries for you. I don't like what this is doing to me, but I know that if I want to have the energy later today to watch 3 active little boys that I can't go shopping, too.

The pain is still at a 3-4. I did take half an extra strength Vicodin this morning. I'm hoping I won't have to take another one but we'll have to play that by ear.

I need to call the neurologist and see if they can give me something for the chronic pain now that it's past where I can tolerate it for days at a time without taking breakthrough meds. I don't want to be eating Vicodin like candy. It's just not very appealing to me.

At least I have the blinds open today...for now...

written on Tuesday

The attack I had yesterday seems to have intensified the symptoms I
had already been experiencing. I just took my 3rd dose of Vicodin
today, and I've taken Xanax and DHE, too. The back of my head where
the occipital neuralgia hits has been tearing me up today. The pain
level has gone from a relatively tolerable 2 to about a 3-4 even
after meds. I'm hoping I can get into the neuro clinic at Barnes
soon - I need some pain management if this is going to be my new

I'm also going to have to start limiting my driving more. If I
drive, it wears me out. My photosensitivity is worse and the
ringing in my ears is louder.

Tuesday, June 27, 2006


I ended up in the ER again. It was half an hour after Miss A's shift started and I was watching the boys and man, it came on like a ton of bricks upside my head. I text messaged her, and got hold of hubby, and she got a ride home from the guy next door who is also her landlord, and hubby met us at her work place (midpoint) and he took me to the ER and she took the van and the boys home since we couldn't drive 2 cars.

I felt like I was going to hurl. I was dizzy and nauseated and my head screamed at the sight of any light at all. The poor boys...I put a movie in for them and tried to keep an eye on them till Miss A got home; they were so good! They sat on the couch and Kenny sat on the floor and they watched their kid song video till Mom got home and she took us up to Flying J, me with a towel wrapped around my head to keep the light out. She and hubby moved the kids over to the van and she took them home. We headed for the highway.

There's an ER at a hospital up the highway from us that was bought out by another hospital system. They've switched to almost exclusively psych but since psych patients try all kinds of interesting stuff, and because, if they closed, there would be no ER for almost 50 miles for some people, they kept the ER open. Thank goodness!

They put me in a dark room and shut the door. 3 minutes later they moved me to a "curtain" and I promptly but kindly informed them if they didn't put me back in the dark, quiet room I was going to puke. They got my vitals and put me back in the little room. I had to leave the door open - claustrophobic, you know.

My blood pressure was !!158/110!! and my pulse was 124. This is NOT normal for me and a good indicator of the pain I was in.

I handed them my list of allergies, meds, and what doesn't work for me. They were glad to see it and I was glad not to have to tell them all of it. I told the nurse when he asked me what worked that the last time they had given me a shot of Dilaudid in my butt. The doc came in and messed with me a bit, and then I got my shot. OUCH. That stuff stings!

They kept me about 15 minutes till it kicked in, and then put me in a wheelchair and took me to the door where hubby had the car waiting. By this time I was more like a lush than I ever am unless I get this drug. I can't walk straight, I get dizzy, and lightheaded, and nauseated, and DARN IT ALL I FORGOT TO TELL THEM TO ADD PHENERGAN...

We stopped on the way home for a drink. Hospitals dry me right out, and my rapid pain-induced breathing (I'm a mouth breather) didn't help, either. At least my claustrophobic head wasn't fighting with me - the pain had lessened so that I didn't have to decide if I wanted the towel wrapped all the way around my head so no light would get in or if I wanted to breathe.

Got home, and by the time I got in here to the couch I was fighting not to puke. Yum. What a marvelous feeling that is! I have some oral Compazine here so I had hubby bring me one, and then I had him bring me a bagel to gnaw on since I hadn't eaten in hours and knew from the feeling in my tummy that I needed to get something into my system. I fell asleep 3 times while I was eating it. Chew chew...doze...chew chew...The nausea finally left after about an hour, thank goodness.

I dozed on and off till after the 10:00 news and then we went to bed. Let me tell you, those sheets felt great!

Hubby and my oldest daughter were invaluable. They helped me in spite of their own concerns about my condition and their calmness (or apparent calmness, I know they freak out when this happens) helped me to remember to breathe and not scream.

I love my family.

Wednesday, June 21, 2006

hopping down the bunny trail again

Okay so this morning I made some phone calls like I promised hubby I would.

The pain clinic at Barnes won't see me without a referral and records.

The neurology clinic at Mizzou Hospital won't see me without a referral and records.

The neuro clinic at Barnes called back. I don't need a referral for them but they do pre-screen, so I just printed up records release forms for my current neuro, the old headache doc, and the place I had my scans done at. I'll mail them today or tomorrow and then once they get and review the records they'll give me a call.

Hurry up and wait...the story of my life.

My head is pounding today. I don't know if it's the stress, the muscle tightness in my neck, the sunlight, the humidity, the constant pain, or what. It's not like I have any predisposing issues.

The area just below my right eye has been twitching since I got up this morning. That's an interesting development. I hope it stops.

The ringing in my ears is especially loud today. Lovely.

I have 3 sleeping cats here. I think I'll go join them.

Tuesday, June 20, 2006

wearing off

I'm recovering from the Doxepin side effects already. I don't feel so dizzy and my coordination is better. I was out a long time yesterday and didn't get all nauseated, which is good.

I did have one heck of a headache last night so I took a whole E.S. Vicodin and 0.5mg Xanax so I could sleep. It worked like a dream. I slept better than I have since I started the Doxepin and woke this morning feeling much more rested.

I guess I need to let the doc know about this drug, too, and type up an updated med list so I have it with me.

Onward and upward...

Monday, June 19, 2006

can't sleep

I have horrid insomnia. I'm wide awake. The back of my stupid head hurts again and it prevents me from relaxing all the way when I'm lying down. The right side of my head is giving me fits even after half an extra-strength Vicodin. I don't want to take any more. I'm afraid I'm going to become dependent on this stuff and it scares the bejeebers out of me.

This is getting ridiculous.

I'm so sick of being this way I could puke.

I want my life back.

Sunday, June 18, 2006

side effects

I'm getting some rare side effects from the Doxepin:

numbness and tingling in my hands and fingers, left side more than right
and, glory be, my head hurts worse now

I guess I can cross this one off my list, too.

I hate this guinea pig game.

I need drugs.

Time for a Vicodin, I guess.

Saturday, June 17, 2006


I hate this disease, and I hate what the medicine that is supposed to help it does to me.

I had to go to WalMart and get a few things today. By the time I got home my head was giving me fits and I was so dizzy hubby had to help me into the house. I was also nauseated to the point of feeling like I was going to throw up, and I rarely get nauseated. I know it's from the Doxepin but I'm on the lowest dose they can give me so I hope it goes away. I'm reluctant to drive now because my perception is skewed, too.

My sleeping pattern is all off. I slept most of the day away yesterday and then last night I may have slept for 2 hours. I napped some this morning. I feel all upside-down. My life is discombobulated.

I missed the birthday party for Kenny and Jimmy today. I'm glad I didn't go, though, because the distance I would have had to drive from there to here is just too far with how I was feeling. It wouldn't have been safe.

I took a Vicodin and 1/2 a Xanax. I hope they help.

I'd like to go to church but the lights, sound, and smells would do me in, so instead I stay here at home in the semi-darkness and try not to aggravate whatever it is in my brain that's making this stupid headache stuff act up. As long as I'm here, I'm fine; it's when I go out and about that things get out of control. I'd hate to end up housebound. I'm so used to doing what I want when I want to do it - this is really frustrating me to have to schedule my life around doctor's appointments, drugs, and how bright it is outside as well as how noisy it's going to be wherever I want to go.

This isn't part of my plan for my late 40's. I don't like it.

Friday, June 16, 2006

Doxepin day 2

Still no bad side effects except for the tiredness. The dry mouth is barely noticeable. There is a slight dizziness first thing in the morning but it's tolerable.

I need to call those places in Columbia today. Maybe I can get in without too much hassle, but I need to see if they take my insurance first. That is probably more important than anything else right now.

At least I'm sleeping again...

Thursday, June 15, 2006

Doxepin day 1

I got the dizzies today, and I've been tired, both common side effects. I think I took 3 naps and they were significant ones, more than an hour for each of them.

I got bold tonight and cut my own hair. I was tired of waiting to have the money to pay for it and I've seen it done enough; I grabbed the scissors, did a whack job, and took a shower. I had hubby trim up the back a bit since it's short and needed some of the neck cleaned up and I can't get back there. It feels a ton better.

We'll see what tomorrow brings...

Wednesday, June 14, 2006

how deep is the rabbit hole?

I got in to see the neurologist yesterday. He gave me a script for my Vicodin and Xanax, and also for Doxepin. I guess he thinks that will be the magic cure-all pill. We'll see. I don't like the look of the side effects.

I also called the Mizzou hospital and got the numbers for their pain clinic and their neurology clinic. Maybe I can find a doctor there who can help me out a little more, and maybe their pain people will be a bit more understanding and not want me over there 3 days a week. St. Louis is unreasonable.

I start the Doxepin tonight. I do hope I don't get the "stupid" thing going again.

My head is a mess. I've had 3 bad nights and finally last night I took drugs before bed so I could sleep. I've missed making hubby's breakfast for 3 days in a row now and feel horrid about it. I also miss that little bit of morning time with him. I've napped on and off all day in between a few errands I needed to run. I feel like I could sleep for hours.

I wasn't going to post today but this is my way of keeping track of all the ups and downs with my meds so here I am. I need a place where I can go and look back and see where I've been in case I forget things, like when I lost my sunglasses in the car today. Thank goodness one of the grandtwins found them or I'd have been out $30 or so because they're the magnetic ones that go with my prescription glasses.

I need to put some chicken nuggets in the oven so hubby has something to eat. It's almost dinner time.

Monday, June 12, 2006

mid-night ruminations

Here I sit, again, in the middle of the darkness of night, having been urged once again by the pain in my head to take the drugs I vehemently swore I would not come to depend on, waiting for the relief I know will come eventually, and trying not to fear that I have become an addict.

I am not addicted to these pills. I fight taking them for the longest time I can possibly manage. I hate them. I hate what I know they represent.

However, I do depend on them. I need the diminishing of the pain they will bring. I need to be able to sleep, to rest, to stop feeling as if I am a writhing mass of unrelenting uncomfortableness.

It sucks, feeling like this.

I hate who I am becoming. I hate having to get up in the wee hours of the morning to ingest compounds that used to knock me out, knowing they will only help ease the reminder of the ever-present companion my neuralgia has become.

I wonder if I will ever again be pain-free before I close my eyes for the last time.

I wonder if I will ever feel fully alive again.

Sunday, June 04, 2006

bad choice - or not

I'm sitting here wishing I had taken the urge to come home and sleep when I got it instead of going to the mall with my daughter and the twins. I don't know why I ignored it.

My head is pounding, or is it pulsating? Anyhow, it hurts like the blazes. It started with the A/C blowing on my right cheek, which I know better than to let happen, and just accelerated as time went along until I got that wonderful stabbing sensation in my right eye socket.

I took Tylenol extra strength, 2 of them, but they're not touching the pain. One way I can tell is that I can't spell worth beans and that only happens when I hurt.

I hate to take the Vicodin again but I may have to.

At least I found some good deals at Penney's. I hadn't been able to find denim shorts in my size for the price I felt was reasonable to pay at WalMart and they had them marked down at Penney's to $9.99, which was $6 less than the cheapest ones at WalMart, so I got a pair. I also got a t-shirt with a gardening thing on the front for $4.99 and an outfit for my youngest grandbaby for $5.99.

It almost offset the outrageous price I had to pay for gas when I stopped to put some in the car.

I either need to get off here and take a Vicodin or take a nap. Maybe I should do both. It certainly wouldn't hurt.

Thursday, June 01, 2006


It's 3 in the morning and my head is pounding. The back of it feels like it wants to explode. The right side is still protesting the earlier attack. I can't see keeping hubby awake since even putting my head on the pillow is difficult, so I got up and took a Vicodin and a Xanax.

While I'm waiting for them to kick in, I made a batch of banana muffins for breakfast. I did some of the dishes including the ones I messed up with my baking, the pot pie pan from last night, and the leftover meatloaf container. I made hubby's lunch for today, fixed up his Gatorade, and opened a can of peaches so he could take some to work with him.

I fight sometimes, especially in times like this, with feeling almost a condemnation from my fundamentalist Charismatic background. I remember well-intentioned but often misguided people saying that prayers aren't answered because people praying them don't have enough faith. I've been beating myself up for that one since I was young, feeling somehow flawed because so many of the answers in my life have been no. Then I remember Job, and how he lost everything he had; and Joseph, who ended up in a hole in the ground and in prison; and Ruth, who lost her husband and her people and wandered the desert with her mother-in-law after her husband died. I remember the disastrous marriage Kathryn Kuhlman had, and how a prominent revivalist of this day and age lost his daughter to cystic fibrosis after his healing and revival services brought relief and renewed hope to probably millions of people. Those kinds of memories help me to regain my perspective and to remember that sometimes, for whatever reason, God says no to our prayers, fervent and heartfelt as they may be.

I have atypical trigeminal neuralgia. I have occipital neuralgia. I have allodynia, and I have chronic migraines. These conditions prevent me from working outside the home in gainful employment, and they interfere in my life in several unpleasant ways, most recently last night and this morning.

I have come to the conclusion in my ever-unwise way of thinking that perhaps learning to live with a chronic condition with grace and not giving up is at least as significant as being miraculously healed. Sometimes living with something is harder, and builds more character, and gives us an insight into things we never would see otherwise; and maybe that is what God intends when He allows "bad things" to happen to "good people." Maybe it never was His intention to remove all our struggles, or to take all our pain away, or to make this an easy, breezy, always-and-forever-victorious kind of life. Maybe learning to deal with what's been handed to us on a daily and sometimes moment-by-moment basis is more important than learning to demand instantaneous release and relief from trials and tribulations.

And then maybe I'm wrong...

But I like to think not.

Wednesday, May 31, 2006


I had a most decidedly unpleasant experience this evening.

I was sitting in my chair watching TV and all of a sudden it felt as if someone had taken an arrow and stabbed it through my eye socket and into my face below my nose, toward my upper left teeth and ear. It was an intense pain, and very strong. I couldn't stay quiet about it. Hubby was very concerned when he heard me cry out.

I think it lasted about 15 or 20 seconds.

After that, it was difficult to open my mouth all the way without feeling like there was a catch in my right jaw. There was pain between my ear and my eye socket along the top of what I can only describe as my cheekbone. I still have that residual pain though the difficulty opening my mouth is gone.

The ATN pain I have has never felt like this. I get sharp electrical-like pains occasionally, but this was a new feeling.

I didn't like it.

At all.

Tuesday, May 30, 2006

atypical trigeminal neuralgia sucks

I'm sick of being in pain. I'm sick of being sick.

I can hardly remember what it was like NOT to hurt. I do remember that I used to work, and run around, and was pretty happy most of the time.

Now my face shows the lines from the pain I live with every day. I look older. I look worried. I look like I hurt.

I hate what this disease is doing to me. I hate that I can't work. I hate that my house is going slowly downhill and I don't have the energy to care. I hate that we are short on money and things are so tight. I hate having to plan my life around doctor's appointments and medication.

Today is not a good day. I'm waiting for the Vicodin to kick in so I can go back to sleep.

It's hard when you hurt and nobody can see why.