day 1512

Just in case anyone was wondering how long I have been in possession of my current pain situation and if I was still keeping track....well, I am.

And now I really need to get off my backside and go get hubby's strep medication, some milk, and something else I'm sure I'm forgetting....

What a fascinating life I lead!

More and more

Well, what I had ended up being a case of strep throat, probably a sinus infection, and some good old H1N1 - thankfully, a milder strain. I've missed several doctor's appointments in the past 3 weeks and rescheduled them...some two or three times.

I'm finally starting to feel better, or at least not half dead. I'm still exhausted and my eyes and ears and nose hurt and I want to sleep all day for the next year and a half.

And now hubby has it. Poor guy sounds like he has a vise grip on his throat. He went to Urgent Care, dropped off his script at WMart, and went on to work. He only calls in if he's half-dead. He had a fever of 101.2. I pushed some acetaminophen down him and sent some for him to take at dinnertime. It's the best I can do.

It's not fun getting old, but it's better than not being here.

Sorry....I'm a bit low on energy.

let me describe this while I can

It's as if someone took a chisel, one of the shorter ones like men keep in a tool box, and flattened the end so it's about as big around as a dime but about 1/2 inch thick; then they took that chisel apparatus, put it on the right side of my face between the far end of my eyebrow and where my hair begins, and tapped on the chisel just hard enough to hurt. Over and over and over and over and over and over and over. For hours and hours.

I can't even stand the lights on the Christmas tree. I had to shut it off. The TV is off.

The tinnitus is loud again, louder than usual.

I just want to close my eyes and sleep away the pain. The problem is, it's always there when I wake up. There's also the issue of the pain that laying on my back aggravates lately with the occipital neuralgia acts up.

I need to be working on Christmas gifts but I can't stand the light or the sound of the machine. I feel horrid. I promised the kids their quilts this year and it looks like that won't be happening again unless I machine quilt them, which I really didn't want to do. If I did, though, I could have them done on time.

I just wish I could have something to take the edge off on days like this, since they turn into weeks more often than not, and with Christmas coming next week that isn't a good thing...

...but what does the pain care?

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...

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.

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 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.

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?

day 590

The ringing in my ears, though it never goes away, varies in intensity and volume.

This has been a bad week for the ringing.

It's been loud and obnoxious more often than not, sometimes to the point of distraction.

Usually the intensity is related to how much stress I'm under, how tired I am, or how much pain I'm in. However, the disorder being what it is, nothing is written in stone except it will be there. Variables are...well...variable.

I'm finding it hard to wear the $40 stupid sunglasses I bought that are supposed to fit over my prescription lenses. See, the problem is, my head is shaped weird, and the fitovers end up resting right on top of the frames of the glasses, and it puts pressure on my head, which is not a good thing. I guess what I'm going to have to do is try to save up enough money to get some cheap prescription single vision sunglass lenses in a cheaper frame.

Now to figure out what to sell or pawn to come up with another $100 to pay for them...

I hate listing on ebay because people want rock bottom prices...not even enough to cover the cost of the fabric for the things I make...and then I have to pay for the listings even if the things don't sell. The other sites...well, I'm not sure; they're still relatively new and I'll have to scan them and find a niche not full yet and make up a few things I can put on there quickly that will sell. They are cheaper - one costs $0.20 to list and then they get 3.5% of your sale price, and the other one is free. That's better than ebay.

I just wish people would realize that there's a difference between hand-crafted and homemade. Homemade is good, but it's for cookies and pies and breads and stuff your kids make for Mother's day. Hand crafted means you put thought and a lot of time and consideration and care into the things you're making, and they aren't necessarily cheap to make. Most times when I sell these things I'm just making enough to cover the cost of the fabrics and then make like $1.25 an hour. It's silly. If we lived where there were little boutiques I could take them there, but we don't.

Some day we won't have to choose between the bills and the groceries. I still haven't got the resources for physical therapy. I know I'm going to catch heck for it, but after we paid what we had to pay this week we have no money left until the next paycheck. I have enough for 40% of the mortgage and that's it. Next week we need the other 60%, more gas for the van, and food...and that's gone.

I'm hoping the pain management doc doesn't penalize me for not going yet. I just can't do it when it takes food out of our mouths or puts us at risk of having the utilities shut off. It doesn't work that way. And I'm NOT putting it on the credit card. Hopefully when hubby gets his retirement check from TWA in two weeks, after we pay on the credit card again and get the septic tank pumped, I can pull enough out of the budget to pay the $180 it's going to cost for 4 weeks of P.T. We get an extra check in June so I might be able to do it, barring unforeseen complications. We've had more than enough of those lately for 4 couples.

day 562

I went and saw the chiropractor yesterday.

She is very good. She put the stimulators on my upper back and neck and then did a lot of adjusting and pressure point stuff. I could feel the muscles relaxing while she worked.

The only thing I think wasn't a great idea was the ultrasound on my neck. I think it aggravated the occipital nerve she was trying to un-irritate.

However, I'm going back next week. It helped me relax enough to sleep really deeply last night and I just needed that break.

Today my head hurts a bit more than normal back where she did the ultrasound so that's why I think maybe doing that wasn't such a good idea. The rest of it was great, though.

By this time next week I should have my new glasses and my eyes won't be quite so tired. That should help, too. What didn't help was the cost, but I needed them, and we had a bit of extra money so Norbert agreed I should get them. I also ordered another pair of the larger Fitovers like the ones he already has so we'll both have a pair that fit us. Mine are just too snug-fitting; they pinch my head and it hurts. It ended up being like half the cost of adding Transitions to the lenses or getting prescription sunglasses and I like how they block the UV light on the sides, too, and have that top thing. It really helps when it's bright outside.

day 559

My right eye is very sensitive to light right now. It's been worse the last couple days than it has been in a long time. The light from the TV hurts it. Regular lamp light hurts it.

I need to get a glare reduction thing for the computer screen since I can't sit here long, either.

I'm hoping maybe when I get my eyes checked next week and get some new glasses it will help. I know I need new lenses. These don't work as well as they used to when it comes to smaller print and things that require intense focusing.

Other than that, everything seems to be going as usual. The Lexapro is still making me very tired and I end up sleeping half my days away. Still, I have enough energy to keep the dishes done, do some cooking every few days, and keep up with the laundry. I guess it could be worse. I'm hoping with time my body will adjust to the medication and it won't knock me out so much. It's hard to deal with falling asleep sitting up a couple times a day.

I'm not needing the acetaminophen as often and that's a good sign...or maybe I'm just adjusting to that pain, too. I think maybe if I took it a little more often the pain level wouldn't get as high as it does. I know the pain doc suggested I take it on a semi-regular basis but I don't want to stress my liver out.

I'm waiting now to hear from the Social Security people about my disability. I'm hoping the doc got the letter in on time and I get approved. However, just in case, I've scoped out a local lawyer who does disability and I'll retain him if I have to.

I guess that's it for now.

Sunday

I decided to have my daughter and grandsons over today despite my pain level. Hubby and his buddy from work went to Mark Twain Lake to go fishing and the Sundays they do that it is a very long and lonely day for me. My daughter's hubby had to work, too, so she dropped him off and brought the kids over and we spent the day together.

They are growing up so quickly!

I paid for the day, though. My head is giving me fits again. The ringing in my right ear is becoming a distraction. It's louder than it has been, and now I'm noticing that when my pain level goes up, the ringing goes up too. Sometimes it's almost like a yell in volume if not intensity, if that makes any sense.

Again, I'm sleepless. I'm wide awake and hubby is snoring away.

I got one of the room-darkening shades made for the kitchen yesterday. If I can, I'll get the other two done tomorrow, and then we can hang them and it should help a lot. I'm making valances to match them as well so it will look nice in there. The front is a dark green stripe with roosters on it. It has fusible interfacing in the middle, and then the back is a mid-burgundy marbled color. It should make quite a difference in the amount of light that gets into the kitchen and thereby into my photosensitive eyes.

Thursday I go to the new neurologist. I'm not looking forward to the ride into the city. Traffic bothers me and I don't know if I'll feel up to driving, and hubby isn't the best when it comes to taking directions. I'll have to really look over the map again and make sure I know where we're heading so I can keep him posted ahead of time.

I have enough meds to make it till Thursday morning if I don't get a flare-up. I'm hoping this new lady won't be stingy with the pain medicine. I don't need a lot; just enough will do.