pain, pain go away

I've had this increased pain thing going on for a couple days. My right jaw hurts and I'm getting the icepick stabbing sensations either in the upper part of my jaw or in my right eye as well. Last night I had to sleep in the recliner because I couldn't lay down. Laying down increases blood flow to the brain and when I'm hurting like this that is one of the last things I need. I wanted to go grocery shopping but had to accept that this is not one of the days I'm safe going alone.

I go in cycles with my sleep. For a few weeks I won't sleep more than an hour or two a day or night....everything is all fractionated and I just get all whacked out. I fall asleep quickly and wake back up just as quickly.
After a few weeks like this I then switch into a mode where I can't get enough sleep. That is where I am now. It started on Monday, I think. All I want to do is sleep. I sleep most of the day and then sleep at night for a few hours, too. I'm tired, tired, tired. I know it's because I've been so sleep deprived that my body is screaming for rest. It's frustrating; another thing to add to the list, I suppose.

It hurts to keep my eyes open.

It hurts to close them.

It hurts to sit up.

It hurts to lie down.

It hurts to recline.

If I don't keep my feet up, my feet swell from the Methadone.

If I do keep them up, I fall asleep.

I've gained back probably 60 pounds of the 100 I lost after my gastric bypass surgery. It breaks my heart. It's hard to exercise because it hurts me to do aerobics and there's not really enough room in here to walk around a lot. Exercising outside is out of the question because of my allergies. I'd like to get a treadmill but I'm hesitant to spend the money in case I don't use it and it ends up gathering dust. I'd like to think I'd be faithful with it. It would at least give me an option here in the house.

I'm just feeling frustrated right now. I'm frustrated because I'm sick and I can't work as a nurse and my husband has to work so hard like he's done all his life just when he was looking forward to retirement. I'm frustrated because my schedule is all upside down and I need to clean but I just don't have the energy. I'm frustrated because this is not my dream. My dream was paying off the house early so hubby could retire and us taking some time to enjoy our lives together instead of struggling day to day like we have since we were young, each of us on our own paths.

I think sometimes for some people it's easy but I've never been there and I probably wouldn't know what to do if I was. My whole life has been a struggle and it certainly doesn't look like it's going to stop now.

I think those of us who have to fight for every forward step appreciate it more. It means more if you can't just go do it.

I need a vacation. An offensive odor free, noise free, half clothed implant loaded body free, alcohol free, smoke free, quiet, moderately dark, soft sheet, gentle breeze, water lapping on the shore kind of vacation.

I don't know if they even make those kinds of vacations unless you're rich, which we're not.

Ah well...one can dream.

still sleepy

I really need to make the appointment with my PCP. I nodded off this morning while I was cooking hubby's meals for the rest of the week in the form of lasagna and didn't wake up till it had been in the oven 3 hours and 15 minutes instead of 45. The noodles were like rubber. I had to toss it. It was inedible.

We can't afford to waste food like that. Hubby has now made a rule that I cannot bake stuff unless someone is home to check on me. It's a reasonable rule, but it hurts nonetheless. It's ridiculous that I can't even stay awake for ten minutes. I had already made the dish and put it in the oven. I got up to go to the bathroom and before I sat down I looked at the timer and saw that I had 10 minutes left on it. I fell hard asleep that fast and slept for 2 hours and 45 minutes.

I haven't seen the doc in 2 years anyhow...I guess it's about time.

I just don't like doctors, even the ones I have to see on a routine basis.

It's been a while

I haven't written for a while.

Things have been pretty much the same. I'm still not sleeping on a decent, regular schedule. It's more like a few hours at a time and then in between I'm always tired.

I'm also frustrated. I wish I could work. I'm tired of being close on money and having to watch pennies. The house payment will be late this week. It's only two days, but I don't like being so darn tight. I'd much rather be working and feeling like I'm doing something than sitting here and getting a check equal to one week's gross pay. That just really stinks.

My head still hurts. The past week or so it's been a little more than before, but I think it's an allergy thing. I dread making yet another appointment with yet another doctor; I see enough of them as it is.

While we're on that subject, I need to see a dentist, but with the facial pain I'm more than a bit apprehensive about that. I need to see my primary doc. I haven't seen her in 2 years or so.

The Methadone still has me swelling up. It's a lovely feeling. I feel like a cow.

I'm a bit depressed. I guess that's obvious.

can I get any more tired?

Man, I gotta get some decent sleep.

My driving is off, my thinking is screwy, and I keep nodding off sitting up.

I can't spell for beans.

I hate not being able to sleep. Even 30 mg of Restoril only gives me 4 hours. This is ridiculous.

I'm going to try and sleep. I need to sleep. I have to sleep. I'm starting to worry me.

2 in 2 days

The 20th and 21st I had migraines. They were, I believe, 2 separate migraines. They were about 24 hours apart. A Maxalt just about did the trick on both of them. However, I now need a refill, and I hate paying the copay for these orally disintegrating tabs because they are far from cheap. Still, it's better than hurting.

We're supposed to go to Abby's for dinner tomorrow. I'm going to have to make sure and take it easy so I can make it. Becky and her family won't be coming but JR will. His girlfriend is working. All this family stuff and some people not wanting to come if others are there is a big fat pain in the butt. I'm pretty sure a discussion about that was at least partially responsible for triggering the first migraine if not both of them.

I'm actually tired. I may get some sleep tonight. I forget to take the Restoril for some reason...I need to move it and just take it every night.

I'm just so tired of taking all these drugs...

day 878

I'm dizzy today. Not really bad, but enough to know I'm dizzy and to have to focus to do things like bending over and walking and going downstairs.

It's very disconcerting.

And frustrating.

I'm not sure what's causing it. I do know I don't like it.

I'm also having a strange case of numbness along the outer part of my right hand. It's like it's asleep or something, but not. Actually, that hand has been bugging me for a while now. I think I sprained it a couple months ago but it never really wanted to heal. I wore a compression thing to help immobilize and protect it some but it is still very sensitive and I have to be careful what I pick up with it.

Sometimes this whole sickness thing is a real pain in the pants. I know God sees it all and knows it all and walks with me through it, but I am still over the whole thing.

I'm filling out Medicare paperwork. Great. Medicare at the age of 48. How thrilling.

Now that the patent on Zyrtec has expired my insurance no longer pays for it. Instead of getting it for under $7 with our prescription coverage, I now pay $18 for 45 tabs of the generic stuff. If I was poor, I guess I'd just have to decide if I wanted to breathe or eat.

I'm cranky.

day 822

Sometimes my head just gets so full of stuff I can't even think straight.

The pain is pretty much the same. A familiar companion now, I wonder if it will ever lessen in severity. I'm pretty much resigning myself to living with it at this level though deep inside I do hope that maybe some day I can find a doctor who will care enough about me as a person to adjust the dosage of my medication so that I can live a little easier and not be so tied to watching every movement, knowing that one too many will put me out of commission for days, if not more.

I'd like to spend time with my grandbabies like I used to, but I can't. I can't tolerate the simple noise that joyful children create as a side effect of the act of being. It hurts. It physically causes me discomfort.

The holiday was nice but I had to ask several times for people to, in a sense, stop enjoying themselves so much because enjoyment naturally leads to sound, and sound hurts.

I wonder if anyone without this kind of pain has any clue how hard it is to live this way.

Probably not.

I wonder if they care.

Most of them - probably not.

They just want to get on with their own lives and happiness and I am in the way.

And that is tough on me.

And I weary of asking people to lower voices and stop sounding like life is so much fun - because for me, it isn't any more, because I cannot stand the sound of enjoying life.

And that is sad.

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 814

The occipital pain has been stronger in the past two days than it usually is. I actually sat yesterday with my eyes closed for a while to make sure it wasn't migraine pain, but I can't feel the throbbing or the feeling of the blood rushing to my brain, and it's concentrated in the back of my head instead of on the right side where the migraines usually occur. It makes for an interesting time trying to sleep because that leaves me one option - my left side. The right side is out of the question, and when the back hurts, then I can't even really go from the left to the back like I can when it's not doing this. Since I don't have anything for breakthrough pain, I can't take anything to help with it. This, again, is one of the things that frustrates me about the pain doc I had for a year - nothing for breakthrough; just suffer with it unless or until it gets bad enough to go to the ER almost an hour away, jolting and jostling on the Missouri roads, to get a shot of Dilaudid and one of Phenergan, and then another hour home.

I am hoping the new doc that I see in January has a better suggestion for me than what I'm doing now. This really stinks. When I have days like these all I can really do is hang around the house, alternating between doing simple non-stressful chores and sleeping. Exercise, one of the things they really push, is out of the question. It hurts just to BE. The thought of the motion and the additional stress it puts on the pain is just too much.

I don't know if I'll get the quilts done for Christmas that I tried to finish last year either. It hurts my head to work on them too long. It's extremely frustrating to have them sitting there, knowing I want to and am capable physically of doing it, but realizing that pushing the pain in my face and head to do that kind of work is only going to make things worse. I don't know...maybe I'll just do it anyway.

I'd like my doc to go through this for a while. I really would. Maybe it would help him see how it really feels and how frustrating it is to not have the choices a person should have to improve the quality of life simply because I also happen to have a psychiatric diagnosis and therefore by implication cannot be as ill as I say I am. The prejudices associated with mental illness make me want to scream.

So much for that. I feel a bit better having gotten that off my chest.

day 802

I really don't feel like going to Columbia today to see that pain doctor. I hate to cancel again, but I think I might put it off till after the first of the year. It takes so much energy to see a new doctor and start all over again with the paperwork and tests and questions and explanations...and after the fiasco with the other doc there, I'm just not sure the extra gas and time is going to be worth my effort.

I'm pretty much at the stage now where I just want to give the new doc at the old pain doc's office a chance first since I know that place and I won't have to go through all that stuff one more time. She may prove to be more humane than the other doctor. If not, I can always look further.

My energy level is pretty low right now and I'm moody and grumpy and I just want to sleep all the time. I'm making myself do things but I'm only doing that so I don't turn into a vegetable.

I hate being sick. I'm tired of being sick.

2 days with little sleep

I've had maybe 3 hours of sleep in the last two days.

This is very frustrating.

I need rest but I can't sleep. I hurt.

I hate this...and I wish I had enough pain medication that I could relax enough to get a good night's rest but I don't know if that will ever happen.

How some doctors treat chronic pain patients with invisible disabilities is a disgrace. We can put men on the moon and build hybrid cars and go live on a space station but people in pain are denied adequate relief because of an archaic view that perpetuates the fear of addiction in people who are far more concerned with being able to live a halfway decent life than they are in how people look at them. I'd just like to have the opportunity to cook a meal for my family without having to stop for rest periods and try not to leave myself so worn out that the pain will drive me to the bedroom later in the day.

Something's wrong here.

day 780

I'm supposed to go see the new doc today.

I woke up from my nap with a migraine.

I have to take my Maxalt and then when the office opens I need to call and reschedule.

This sucks. And it makes a bad impression on the doc when I have to reschedule my first appointment.

Not to mention I was hoping to fire the jerk pain doc after seeing this one today...

Ah well, such is life.

Gonna go lie down and hope the med helps.

day 775

I feel nasty. I've got some kind of sinus junk going on. My eyes ache. When I close them to help the aching I fall asleep. Consequently, I've been doing way too much sleeping lately.

I'm also nervous about the new doc. I am holding out hope that he will treat me as a person in pain instead of a nut case engaging in drug seeking. I just want to be seen as an individual instead of a diagnosis.

I'm PMS-cranky. That doesn't help things, either.

Oh well...at least I'm still here. I'm not about to give up.

day 767 late

I see the shrink tomorrow.

In two weeks I see the new pain doc.

I am hoping he can take over for the old one before I get dumped. I really don't want to get dumped and be stuck with no pain meds. That could be a horrid mess.

I'm stressing over it all but have managed not to pick hardly at all today. I'm not sure I can explain that but I'll take what I can get.

The clinic in Springfield called and they don't do pain management. How how do you treat headaches without pain management? I can get a neurologist here...and a psychiatrist...and a crappy pain doc...why fly to Springfield to get those and no pain doc on top of it all?

Guess I keep looking.

Yuck.

day 764 - depressed

I think I finally realized that I'm majorly depressed again.

The possibility that I'm not going to find a doctor willing to treat me like a person and help me manage all these conditions I'm in the midst of is overwhelming.

It might explain why I'm sleeping all the time again.

Can't they just do what they went to school to do and be a doctor?

On another note, I'm dizzy. It's weird. I don't know why...or how...no changes in medication or anything of that nature....just dizzy.

2 hours till med time...why bother going to bed, only to have to get up again?

blah

Yet another doc at a loss as to what to do with me...

She wants me to go to a neuropsychiatrist and to the Diamond Headache Clinic in Chicago. I know nothing about Chicago except that it's expensive. The hotel rooms in that area run $100 a night and up. If the clinic wants you to do biofeedback, you have to pay on that day and file for reimbursement.

My question is, what do poor people do? Just hurt? We can't pay that kind of money...unless we don't pay some of our bills, and lose the house. From what I read about the clinic I'd be a frequent flyer for a while becaause they expect several biofeedback appointments, close monitoring of pain medications and effects, and other stuff like that.

I'm going to check on a pain doc in the same town the new doc is in and make the neuropsych appointment and take it from there. I can't afford this stuff. Maybe I'll just have to learn to deal with it. I just hope they don't take my Methadone away.

moving around

Yesterday most of the pain was in the back of my head, near the top. I went to bed, finally, and had to get up and come sleep in the recliner with my neck pillow behind me so my head didn't touch the chair.

Now it's moving to the frontal lobe area.

And the ever-present ringing is still at a higher level.

I love these days.

Ring around the headache, anyone?

blast it all

Darn pain doctor....I really don't like that man.

First off, he tells me that increasing my Methadone dose to 20 mg a day, which he is doing very very very reluctantly, puts me in danger. It's bad for my health. He insists I see a dentist because it can mess with my teeth. That's a new one. I tell him when I have the money I'll go to a dentist. I can't pay for a cleaning and inspection and neglect the house payment.

Then he says I have the WORST case of PTSD and anxiety he's ever seen and asks if my psychiatrist has suggested hospitalization.

Why? Because I'm in so much pain I'm crying again?

Because I'm picking at the sores on my arms like I've done for 35 years?

Because I'm stressed?

No. Really???? I'm stressed because I hurt. I don't hurt because I'm stressed.

I reminded the dork that I've had PTSD and OCD and Borderline Personality Disorder since I was, like 12, and functioned in society on a relatively even keel with it, even managing to raise 3 kids on my own and they all made it to adulthood in one piece. Those diagnoses have NOTHING to do with the fact that I hurt like blazes. I hurt. I need meds so that I don't hurt so much, so I can sleep, so I can function and vacuum my living room and sweep and mop the kitchen and fold the laundry. I don't want to go to Vegas or Mozambique or Paris...I just want to keep my house clean and not hurt so bad I can't spend time with my kids and grandkids.

He then mentions that he may not be the right doc to treat me because he's uncomfortable with such high doses of Methadone. High? 20 mg a day? Come on! This hint wasn't missed. I know where he's heading next. He hasn't said it yet, but I know what's coming the next time I see him.

So I came home and called the doctor of an online friend. This doc is in Columbia, another 45 minutes further from my house, but she is treating my online friend like a real honest-to-goodness person in spite of her pain.

I have an appointment with her on October 22 at 10:15. I'm hoping this lady and I hit it off because I'm running out of options here. I know that Dr. Toad wants me off the Methadone. He still won't give me anything for breakthrough pain but the Tylenol. He, like the neurologist, thinks this is all related to my psych diagnosis...something which, amazingly enough, has not occurred to my psychiatrist, who sees the stress and anxiety as being aggravated by the pain.

So anyhow, for now I'm up to a whole whopping 20 mg of Methadone a day, in 4 5-mg increments. I know...I'm just the druggie of the month here, aren't I?

I'd like to do a few things to give him an idea of how I hurt. First, I'd bash him in the head with a baseball bat a few dozen times. Next, I'd take his family jewels and put them in a couple 2-inch C-clamps and tighten them as tight as I could. Then I'd walk out of the room for about 3 weeks and when I came back, I'd tell him he sounded stressed and suggest maybe he needed to be hospitalized for his psych issues. I'd give him some Tylenol for the pain and tell him anything stronger could have serious detrimental effects on his health.

Yep...there is a sadistic component to my BPD, and when I get mad, it comes out. Fortunately I never act on it...but I do fantasize a lot.

well, that was necessary

They decided to recommend I stay as my own payee once I shared with them I take care of all the finances in our home and make arrangements for all appointments, repairs, bills, and handle all the banking stuff.

That was what was holding up my back pay, so it should be coming through soon. I hope so because I'd like to get the new garage door and opener taken care of before it gets cold. We also need a tune up on the van, 3 new tires, and transmission service. I want to get the back windows checked to see if we can get the wiring fixed so they will open and possibly get the air conditioning repaired. I still haven't decided if we're giving the van to Abby and Donovan or keeping it. They have the Suburban so they really don't need it but if the Taurus goes belly-up they're gonna be in a fix again with only one vehicle especially with them living out so far. I'm half-tempted to get them a little runaround car and that way Donovan can drive that to work and back, like it or not, and the Suburban can stay with whoever has the kids.

I still hurt, even after 2 weeks on the new doses of Lexapro and Xanax. All they've really done is make me more and more tired to where I sleep at least half of every day away. They also helped me be able to more easily distinguish what was anxiety and what was pain. Great. I guess...

I see the pain doc tomorrow. If he gives me flak I'll be looking up a new physician. I'm just tired of his crap. I know the DEA is all up his butt and I understand the pressure to some extent but I'm a patient in pain and I deserve to be treated like anyone else with a disability regardless of whether or not the disability is one you can see with the naked eye. I didn't choose to have this kind of pain. I don't like being discriminated against, or feeling like I'm being discriminated against, simply because my disability is invisible.

So now it's time to wait on the back pay and decide how to utilize it most prudently. The garage door is important. It's falling to shreds. It's been repaired several times and won't last much longer and opening it by myself causes agony in my head. Either the van needs to be fixed or we need to get something else, and then that will need repairs, I'm sure. We need to winterize the chicken coop. There is so much that needs to be done...it's a matter of prioritizing and deciding what can wait and what needs to be done first.

I wish I could work....this would be so much easier. Twice the income, at least, would make for more to fix and maintain things with...but that's not what I've been given, so I'll deal with it the best I can. At least hubby is here and he helps and supports me even when I don't come to bed at night for days at a time. He's my rock here on earth.

the pain still sucks

I've been on the increased Lexapro and Xanax for a week and a half now. There's not really much of a change unless you count my inability to stay awake for more than 4 hours at a time. In fact, yesterday I was awake for less than 5 hours. I stayed in the recliner almost all day long. I did get up to care for the chickens, because they depend on me; I went to the bathroom several times because I ate something that didn't agree with me and had dumping syndrome; and that was about it.

My pain is still clear and still at a 7 to 8 most times. It doesn't wake me up, but it's always there when I do get out of bed or the chair for any reason. I think after a while the body just has to rest no matter how bad the head hurts and sleep just comes on.

I go to the pain doc on Friday. I'm hoping he'll give me an increase in the Methadone. I'm not holding my breath but I certainly hope he doesn't expect me to live like this. I have the names and numbers of a couple other doctors a bit further out and if he won't help me I may have to seek a different provider, though the thought of having to start this all over makes me anxious.

Later today we go to the Social Security office to find out what the issue is with my ability or disability to handle my benefits. I thought I was supposed to be getting better, according to my grant letter...now they say they're concerned about my ability to handle my own money? If they want me to play stupid, I will. I can do that if I need to in order to keep getting those checks. I don't like it, but whatever they want me to do, I'll do.

I'm going to ask about my back pay, too. It's been 3 months since I got the award letter and I haven't heard anything about the more than 16 grand I have coming in back pay. We need that money to do some repairs here and pay off a few bills. I'd like to see it before the end of the year. Then, I have to file an amended tax return for last year so we don't have to pay taxes on everything I get in one year, since technically half of it is for last year. One day we'll get the tax thing straightened out. At least the taxes we owed from 2005 are paid in full now and that's not hanging over our heads.

I've started my pain article. I really need to work on it but I need to get the pain in my head under a little more control first.