day 705

Lord. My head is killing me again. The pain level is still high and nothing I do lowers it for more than a couple of hours. Now the sleeplessness is back, too.

I don't know how people who hurt more than this make it. It about drives me bats.

My concentration is affected. I'm concerned that if they don't get my pain under better control I'm going to have to hand over my car keys and stop driving. I'm worried about getting in an accident because I have trouble focusing and paying attention at times.

I can't believe that they say I should be able to work like this. I know we have a review in March already so I'm writing everything down. This way I have documentation. Maybe I should leave the spelling errors in as well, only my OCD won't let me. I'm fighting horribly with the keyboard tonight. I can't seem to get my fingers on the right keys no matter what I do. Thank goodness for spellcheck.

I can't stay online long anyhow...the screen light hurts my eyes.

All for the best, I suppose...

another migraine - day 695

had to take Maxalt again today. is it all starting over?

day 692

Well, it was bound to happen.

The pain got to an 8-9 and stayed there. I took Maxalt. I took E.S. acetaminophen. I laid down. I tried to sleep. Nothing...nothing....nothing...

So I woke hubby up and we headed to an ER much further from our home but one that I was fairly confident would treat me like a person and hopefully give me what I needed to break the cycle.

They were kinda slow, but that's because they were busy. They're starting up with another new computer system, this one for charting, and it takes time. Add to this my massive list of meds and allergies and diagnoses and it just takes time.

They were gonna hook me up to the heart monitor - everybody gets that - until I reminded the tech I'm allergic to adhesive. He hadn't looked at my bracelet, obviously.

Blood pressure was like 144/90. Pulse was a little high.

They put me in a back room, quiet and far from the desk. They didn't holler in the room, and the doctor was even quiet and very kind. He asked me what was up, and what we had found to be effective when this had happened in the past. I told him, and he said, "Okay. We'll get it for you."

I was almost shocked. No arguing, no counseling, no negativity at all.

The nurse, amazingly enough, asked me if I was allergic to either Dilaudid or Phenergan after looking at my sensitivity/allergy list to make sure I wasn't sensitive to either one before she gave the meds.

So into my butt went 2 shots...2mg Dilaudid, and 50mg Phenergan. They aren't compatible so it has to be 2 shots. By then I didn't care. I just wanted to stop hurting.

10 minutes later I still hurt, but I didn't care so much.

It was another 10 minutes or so and they sent us home.

No hassles, no grief, no implying that I was drug-seeking or that the problem was all in my head...just the shot, and the paperwork, and discharge instructions, and I was on my way.

I am writing a letter to the hospital and a thank you card to the nurse. I was treated with dignity and respect and kindness and I needed that today. It has started to restore my faith in the system.

Now I'm going to bed.

day 691

Still far too much pain.

Still no relief.

Got hold of the doc's office; they hadn't sent the script for the Methadone out yet...and hadn't done anything about the Maxalt, either. They called the Maxalt in and put the Methadone script in the mail yesterday. Guess it was overlooked. Kinda interesting considering the calls were made on two different days 5 days apart. Someone isn't doing their job.

May have to go to the ER if this doesn't stop.

I hate that thought.

day 689

I called on Monday for my Methadone refill and it still isn't here.

I called last week for a Maxalt refill and it isn't here, either.

I'm getting upset.

I hurt so bad I could scream. What can I take? Nothing. It totally sucks.

I hate this.

ow day 687

My head has been bad for almost a week.

The pain level is once again a 7-8 even with the meds.

I'm so sensitive to light and sound even the ceiling fan about drives me crazy, but I have to have circulating air or I feel like I'm suffocating.

It's that right side intense pain again. I just can't get rid of it.

I'm almost to the point of heading to the ER and asking for drugs.

If I do that, though, it won't be the ER closest to us. They're downright rude to me there.

Besides, I don't have a way to get there. No vehicle.

Guess I tough it out.

I need to reschedule my psychiatrist's appointment. It's for 11 tomorrow and the temp is supposed to get up to 103 with a heat index about 110 and we have no A/C in the van. I'm not sure I can tolerate that heat in the pain I'm in. Maybe they can get me in next week. If not, I'll figure something out. Depending on when JR works maybe he can run me up there if I give him gas money. He wouldn't mind, I'm sure, especially if I buy him lunch, too. That's a good way to bribe a single guy...food.

Gotta discuss this with the pain doc when I see him again. The pain issue has got to be under better control.

whacked

My pain level and meds and everything are all whacked and spazzed out because Kenny has been sick. I've been taking tylenol with every dose of Methadone for almost 3 weeks to keep going and do what has to be done.

I'm glad the poor kid is out of the hospital now. Things in my daughter's familly will get back to almost normal and I can catch up on my rest. Being tired makes the pain worse.

This weather sucks, too...it's not helping my head one little bit.

day 657

I was approved for disability going back to October of 2005. They have a mandatory 6 month waiting period so I'll be getting compensation starting from April of 2006. I won't get the back pay right away but it will come. First I'll get a check for June and then we'll get the back pay in either one lump sum or in a few split up payments. I'll be getting money every month on about the second Wednesday of the month, directly deposited into our checking account.

This is a Godsend. We've been so tight on finances it's been painful. The extra money will enable us to get the rider mower fixed, get a little second vehicle so one can be here in case I need it, we can fix the garage door, and several other things we've had to let go because we just didn't have the financial wherewithal to do the stuff that needed to be done.

Once things are caught up and bills are paid we're going to start adding a few hundred dollars a month to the mortgage payments so we can pay it off early. If I can put an extra $500 a month into the mortgage we can subtract $6K a year from the principal and eat away at the interest we have to pay as well, which means we could conceivably pay off the property in less than 10 years. That would be 14 years early. That would be darn nice.

The pain has been horrid the last few days because of the stress I'm under with Kenny being sick and the weather and all kinds of crap including not nearly enough sleep. I had to take a Maxalt the other day while I was at the hospital and then had to hang out for 8 hours or so until I was safe to drive home. What a mess.

I need to tell the pain doc when I see him that I need something stronger for breakthrough and that I need the Methadone dose increased. I can't live like this for the rest of my life. I need relief from this pain. It's messing with my life way too much. I don't ask to be pain free, but I think to expect me to live with the pain at a level of 5 all the time is unrealistic.

We'll see what happens. He may refuse. I can only do what I can do.

argh

I have the flu or some other godawful virus.

I've had a fever for going on 5 days.

I sweat, and chill, and chill, and sweat.

I don't feel like doing anything but sleeping, and then sleeping all day leaves me sore and up all night.

I can't wait till this junk is gone and I'm back to just hurting again.

Kenny has had it for 10 days now. I think I got it from him. The thought of 6 more days like this makes me want to scream.

It's a sad place to be when you just want to feel your normal bad...but that's where I am.

never-ending - day 649

I've made an interesting observation.

For people like me, who are in pain all the time regardless of activity or inactivity, light or dark, meds or no meds, sound or quiet, touch or isolation...

It becomes possible, after a while, to participate in limited activities that were out of the question a year ago.

It's not that I hurt less...it's that I've become so accustomed to it that on certain days and at certain times I can function past the pain on a limited basis as long as I know it's short-term. I also need to know I can decompress and rest afterward to recover.

Case in point:
The lawn.
The rider mower bit the big one.
We have 4.2 acres of land.
Hubby is working 60+ hours a week to pay the bills and keep us in drugs and such. He cannot come home after working that long in an un-air-conditioned factory in the mid-Missouri humid dripping wet hot summer and spend 3-4 hours mowing the lawn to keep it from turning into a prairie.
It hurts like hell to go out there and mow, yet, in the past couple weeks, I have done over 1/2 of our lawn with the gas-powered push mower.
I'm exhausted.
I'm dead on my feet.
But it's almost done, and I don't have to worry about my man being half-dead and falling over somewhere in the middle of his job and me being left alone.
Yes, I still hurt. I'm still miserable and I have tension headaches on top of all the other headaches and I hate it because I get eaten by bugs and sunburned and sweat drips into my eyes and I stink.
However, this is what we have to do until we have the money to either replace or repair the rider mower, and that won't be any time soon.

Anyhow, it was interesting to notice it.

Pain level - 7-8 most of the time unless I take a day of doing nothing; then 5-6.

Acetaminophen - 2-3 times a day, 2 extra strength = 1000 mg twice a day at least. Bye bye, liver!

I'm going to try to find a PCP who will be willing to work with me on the pain meds. Maybe one of the newer docs out in this area will do it. They're not new docs, just have a new office in the next town over.

Eyes hurt. Head hurts. Body not as sore as it was last week but my right hip still is not happy with me.

day 644

I've tapered off the higher dose of Lexapro and back to the old familiar pain instead of the new discomfort. I'm not sure it's better, but I can deal with this. I'm also back to taking acetaminophen twice a day most of the time. That stinks.

My mood is worse, but the better mood wasn't worth the increased pain. I'll adjust. Part of it is hormones, too -perimenopause combined with PMS can really be a bear to deal with.

It's been a rough week pain-wise. I'm having a lot of occipital discomfort this week and my eyes just ache and ache and ache.

I'm not sleeping worth a darn. I'm up most of the night and then out most of the day, which interferes with most anything productive I could do in the daylight hours...not that I can enjoy them much, anyhow...

I hate to moan but I'm miserable.

I'm entitled once a month, eh?

day 639

I dropped down to the 10mg dose of Lexapro on Monday. While the extra head pain is lessened and the ringing in my ears is fading back to normal, I'm also noticing a change in mood. I'm feeling melancholy. I'm not thrilled with that but I'll get used to it.

At least I'm not eating Tylenol like I was...

I should be hearing this month, I hope, about the disability. I do hope we don't have another fight on our hands.

Time for a nap.

day 634

That's it.

Tomorrow I start back on the 10 mg of Lexapro.

I'm not going to stay at this dose. It's not getting any better; in fact, it's getting worse. I simply am not tolerating this and I'm not going to make myself do it any more. I gave it 2 weeks and that's what I promised.

Back to the drawing board...

day 629

The head pain is worse.

It's a different kind of headache, one I'm not used to. It's almost like a tension headache.

The ringing in my ears is a lot louder than I'm used to as well.

I don't like this.

I'm constipated. I don't know if it's from not moving around as much or what, but it's no fun.

I'm sleeping an average of 14-16 hours a day.

I promised myself I'd give this a full 2 weeks after I started noticing a change before I gave up on the higher dose.

Making it to next Tuesday could prove to be interesting.

Even doing simple things like giving the chickens water and food takes all the energy and motivation I have. The dishes pile up in the sink. The carpet goes un-vacuumed. Laundry sits in the dryer for days.

This is not good.

Not to mention the fact that I haven't noticed one positive effect from the increase in the Lexapro...not one...

day 627

Okay...it's been almost a week since the higher dose of Lexapro really kicked in.

I still have increased ringing in my ears.

I'm getting a few more headaches than normal, and they're of a different quality.

I'm dead dog tired.

My hearing is more sensitive.

I had two migraines last week, one on Thursday and another on Friday.

My spelling and concentration suck.

I'm not noticing much benefit from this increase, but I'm going to give it a while longer before I let the doc know and see if I can go back to the 10mg dose instead of the 20mg.

To be honest, I feel like a slug. Everything wears me out faster than normal, which was bad enough. I don't feel like mowing or exercising. Taking care of the chickens is like a herculean effort. I had a sink slam full of dishes twice in the last week and I don't do that kind of stuff, but I didn't have the energy to do them, so I let them sit.

It bothers me, feeling like this, especially since as far as I can tell at this point in time it's not helping any.

However, I will give it a try since the adverse effects aren't enough to incapacitate me.

Maybe it will get better.

I can always hope.

feeling stupid

The increased dose of Lexapro is really kicking in today.

I feel dumber than a box of rocks.

I dropped a clean washcloth in the toilet when I was trying to put it away. I can't remember words, or things I said, and I sit here sometimes and stare at this screen trying to remember what I came to do.

My typing is horrid.

I hope this is a short-term thing.

I'm also getting dizzy if I get up too soon or too fast.

Hopefully as my body adjusts to the medication it will fade or even go totally away.

Ok. Now I can't make any sense. I need to go.

day 621

I saw the pain doc yesterday.

He's pleased with how I'm doing. He doesn't want to see me again for 3 months.

He's already talking about decreasing the Methadone. I think he feels like if I lose some weight and get more active that I'll stop hurting.

The stereotype of people with excess weight in chronic pain is ridiculous.

The pain in my head and face has nothing to do with my weight or size.

However, we'll cross that bridge when we come to it.

I'm just glad he didn't yell at me for not going to P.T. I simply told him we couldn't afford it and that I was getting exercise by mowing 2-3 times a week with the gas-powered push mower on hillside land. He seemed to be okay with that.

Today is a rest day...I hope.

day 618

The psychiatrist increased my Lexapro to 20 mg.

He showed me that he had indeed mailed the letter as I requested, writing it to reflect the SSA guidelines for getting disability for depression.

Now it's just a matter of waiting for their answer.

I've been mowing a lot. Our rider is broken and we need to use the push mower until we can get it fixed. I do an hour or so two or three times a week. I got a bad burn earlier this week so I had to stay in for a while and then this morning I went out for almost 2 hours. I've been taking more acetaminophen due to the headaches from the sun and increased activity. Still, it has to be done.

I'm hoping the Lexapro will help a bit more with the pain.

I see the pain doc on Friday.

Other than that, it's pretty much same old same old.

day 616

I had a mini-meltdown last night.

I'm just so tired of being sick...it frustrates the heck out of me. I used to be able to go, and do, and work, and do more, and I was happy and felt productive and liked my job...

Now I feel...yuck. I'm tired almost all the time, and I am always always always in pain, and I'm tired of it. I'm tired of the pain doc thinking a 5 is an okay pain level to live with all the time. I'm tired of hurting and not being able to do things because I hurt.

I'm just over it all right now.

I'm glad I see the shrink tomorrow. Maybe he'll up my Lexapro. Maybe that will help.

One can always hope.

day 613

It's another one of those pain days....

My head registers every stimulus as pain in addition to whatever the stimulus is...sound, movement, light, touch...

I hate this.

I hate more that I can't get enough medication to bring it down a little without feeling like I'm giving away half of my life.

I'm tired of living at a 5 or worse almost all the time.

I'd just like to be close to normal again...

But that isn't going to happen, is it?