adjusting

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.

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.

frustration

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.

awake

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.

frustrated

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? Geeze...it'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.

changes

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.

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.

ouch

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.

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

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.

ugh

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.

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.

waiting

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.

acuteness

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 know...it'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.

tinnitus

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...

morning

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.

early

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.