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.

freaked

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 pill...my 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.

Great.

I guess it's back to the Vicodin.

~sigh~

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.

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.

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.

insomnia

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 now...it got out of control.

Yippee.

Here we go again.f