day 480

0720 - Heck of a migraine. Took a DHE.

I go see the shrink on Wednesday.

The visit with the pain doc went well. He was in a good mood. I don't go back for 2 months now.
I need to call, though, because he only gave me enough Methadone for 30 days.

It's hard to believe I've been in constant pain this long. How do people live with pain for 20 years?

Maybe I'll find out.

day 472 - been sick

I've been sick for 2 weeks now. Nausea, no hunger, just feeling yuck. I can't eat much and I mean it. Chicken noodle soup, saltines, ritz crackers, herbal tea...that's about it. Everything else just makes the nausea worse.

I'm losing weight, which isn't necessarily a bad thing, but this isn't the way I'd choose to do it. I'm going to see if I can get in to see my doc tomorrow. If not, I'll probably go to urgent care.

I have an appointment with the pain doc Friday, and then the next Friday I see the psychiatrist.

Other than that things are pretty much as they have been. It stinks. Haven't heard thing 1 about the disability appeal process. It's been almost a year. Thank goodness hubby has a good job or I'd be homeless.

day 455

I guess I'll be adding Prozac to my list of bad drugs.

After taking it for 20 years, it's finally decided it doesn't like me.

When the pain doctor increased the dosage to 40 mg daily, it was okay. When he bumped it up to 60 mg, things started happening. I remember my sister having these things happening to her - agitation, palpitations, insomnia - none of them very nice. I took myself totally off the Prozac at that point and stayed off it for almost a month.

A few days ago I started it again at the 40 mg dose.

WIthin 3 days I was agitated almost to the point of mania, had bad insomnia, was experiencing mild palpitations, and by yesterday I was shaking so badly that I couldn't push the numbers on the phone.

Needless to say, I've stopped taking it again.

For good.

It is a pity because it did help the pain, but there's nothing I can do about that. When the side effects are more influential than the assistance, it's not worth the bother.

Today I will resume my search for a counselor or psychiatrist. Our insurance isn't very good about this kind of stuff. They have a nice deductible and then they only cover 90% up to $2000; then you're on your own. I'm looking for one that will work with me on a sliding scale basis once the insurance tops out. It may take a while.

Other than that, things are pretty much status quo. I hope they stay that way if they're not going to get better.

New year, same hopes - day 452

I'm up early; it's just about 5 am. I've been awake for a while now.

I think I'm taking a little time to adjust to the higher dose of Methadone. I generally get a bit odd when he increases it. Besides, my self-imposed break from Prozac (one month) is over and I'm back on that now, too, so it may have something to do with it.

So now I'm up to 5 mg of Methadone twice a day and 40 mg of Prozac. I may have to change the time on that because I'm not sure if it's interfering with my sleep or not.

Starting tomorrow I'll be looking for a psychiatrist. My pain doc recommended I see one because of the psychology that accompanies chronic pain and the fact that it's becoming physically evident on my body with signs of possible OCD as well as depression and stress. Hey, if that's what he thinks I need, I'll do it. I knew it was coming anyhow.

I'm hoping maybe this year my disability will come through and we can breathe again. In the meantime, I'll do what I can and not do what I can't.

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.

wonderful

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.

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.

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...

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...

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.

wow

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.

Progress

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.

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...

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.

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.

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 stuff...it'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.

Migraine

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.

irked

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.

frustrated

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.