frustrating

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 hand...it's just that right now, I don't feel it very much.

midweek

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.

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.

ow

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.

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 that...fit 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.

Wow!

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.

sometimes...

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.

Grrr...

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.

sleep

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.

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.

Ow.

My head hurts.

That's what I get for sleeping.

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.

nope

the trileptal is bad news

tingling in hands and feet
trouble with words
stupid feeling
very emotional
agitation
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

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.

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...

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.

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.

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.

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.

poem

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

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 do...it 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.

pain

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...