Wednesday, December 26, 2007

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.

Tuesday, December 18, 2007

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.

Saturday, December 15, 2007

day 811

Okay, so I ended up cancelling again. My head was pounding. I'm going to check out the new doc here who is replacing my old cranky one and if it's not going to work out with her I'll make the appointment with the other guy.

I've been kinda between depressed and feeling driven to do and be and all that junk because of the season and because of the new baby. I'd like to just crash for about a month but it's not going to happen.

Realizing the extent of my borderline personality disorder has been a bit tough on me but at least I see it for what it is and I'm trying to work with it and keep my life somewhat consistent instead of flopping all over the place.

I don't really feel like writing either here or in any one of my other blogs. I'm really lacking that kind of motivation right now. Maybe it's the SADD kicking in again. Then again, maybe not.

I wonder sometimes how I manage to function like I do considering all the crap that I went through as a kid. It's hard to remember a lot of it - I've blocked years and years of my life as part of that psychological protective mechanism process. It's frustrating, though, to think that there are periods of time where I was here, and alive, and being who I am, and I can't recall that time. It must have either been bad, or it would have triggered memories I couldn't handle, so my mind just put them in a box, taped it shut, and stored it on a shelf way, way back in the closet in the corner of my brain.

I know it's for the best, but for how long?

Wednesday, December 05, 2007

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.

Wednesday, November 21, 2007

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.

Tuesday, November 13, 2007

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.

Friday, November 09, 2007

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

Thursday, November 01, 2007

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.


Monday, October 29, 2007

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 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?

Monday, October 22, 2007


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.

day 757 - nervous

I see the new doc today.

Beth, my online friend, says she's a good doctor. I just hope she doesn't look at my list of meds and allergies and diagnoses and toss her hands up in the air. I don't need that right now.

I'd like to be treated like a real person with real pain instead of a nutcase. I'd like adequate pain relief. I'd like to trust my doctor not to think what I'm going through is all in my head, though indeed that is where most of the pain is. It's there, but it is not psychological in origin. The psych issues were there a long, long time before the pain showed up.

I'm still trying to decide if I want to drive or if I want to put gas in the van and let Abby drive. She's so far along it might not be a good idea. I guess I'll have to see how I feel when it's time to leave in just over an hour.

I was going to try to nap but that's not going to happen. I can't relax enough.

It'll be over soon and I'll know how she is. I hope it goes well.

Wednesday, October 17, 2007

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?

Tuesday, October 16, 2007

bad day - 751

I was supposed to run errands yesterday.

Instead, I got a migraine.

I got to take my nasty-tasting Maxalt-MLT and stay home and rest.

At least I caught it early and didn't have anything that absolutely had to be done.

Today I do need to go get hubby's meds and the new lenses for my glasses and pick up a few groceries but that's about it.

Now I have that hangover that Maxalt gives me and I feel like I could drink a lake.

I need to go to bed and get some more sleep. I can't type worth beans, anyhow.

Monday, October 08, 2007

day 744

So I trudge along, waiting for the day I see the new doctor.

I hang on and take my medications and try to stay on a relatively decent schedule.

I do what I can and try to prioritize so I'm not wasting my energy.

That is the most I can ask of myself at this point in time.

Tuesday, October 02, 2007

day 738

Well, the increased doses of all the meds combined have mostly brought my pain level down to a 6. That's better than a 7-8. It's amazing how much more I can do with a 6 than I could with the higher level.

Wait...let me quantify much more I can do...when I'm awake.

I sleep away most of the day now and then I'm up at least half the night. It makes for an interesting schedule. Even if I do get to bed I wake up after a couple hours and then I'm done till the next time I get tired enough to go to bed. It's a killer on our romantic life, if nothing else...

I see the new doc in just under 3 weeks. I hope things work out with her. I'd like to get the pain back down to a 5 so I can at least keep the house clean without feeling like I've just run a marathon...and I'd like to care if my house is clean.

Maybe then I could even exercise a bit. That would be nice, for sure.

Friday, September 21, 2007

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.

Thursday, September 20, 2007

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'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.

Tuesday, September 18, 2007

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 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.

Saturday, September 15, 2007

day 721 - weight gain and clothes

The forced inactivity caused by my pain, combined with the insomnia and somnolence brought on by the change in my meds and my pain, has contributed to yet another 10-pound weight gain. I am now 50 pounds heavier than I was at my lowest weight. I am frustrated. I was in a size 14 at my best. Today I put on a pair of size 20 jeans for the first time since last spring and they feel like sausage casings. I put them away and pulled out another skirt.

I want to exercise.

I want not to eat so much.

I want to sleep and have energy.

I want to feel like I have a purpose.

I'm whiny and hormone-y and I'm not happy that I'm going to have to buy a pair of size 22 jeans for chores this year. Maybe I'll just do them all in dresses and change after I'm done getting all dirty. Dresses are a lot more forgiving.

Part of the problem is that my waist is not how the clothes-makers feel it should be in proportion to my hips. Either my waist is too big for my hips, or my hips are too small for my waist. If I get the pants to fit the hips, they won't go around my waist. If I get them to fit the waist, the crotch hangs halfway to my knees and I feel like my hips are lost in a sea of fabric.

My brain is not right. The drugs and the stress of knowing they think I'm incompetent while considering me possibly well enough to go back to work in March have really messed with my head. I forget simple things and obsess over stuff that really isn't all that crucial. I's just all weird.

Friday, September 14, 2007

day 720

Yes, I'm still counting. Why? It's important to me.

I got a letter in the mail two days ago. I have to take my husband with me to the local (45 minutes away) Social Security Office next week. Why? Because, according to the judge that granted my disability claim, "You may need assistance in handling your Social Security benefits."

What the heck?

I'm in pain. I'm not developmentally delayed, or insane (at least not obviously), or incompetent. I have psych diagnoses, yes; but those diagnoses do not hamper my ability to handle my benefits any less than they hamper my ability to handle our household finances and make sure the bills get paid on time every month, the car has gas in it, we have food and clothes, and the electricity stays on.

What makes the whole situation ironic to me is that when I was approved, they sent - along with my approval letter - a statement telling me that according to the doctor's notes I may recover from this situation and that they were going to re-assess me in one year instead of 3. Now they tell me they're not sure I can handle my own money, but in 6 months they're going to look and see if they can make me responsible again for the welfare of up to 8 post-op patients at a time for 12 hour shifts?

Does this seem odd to anyone but me?

I think it was the magical 3-word phrase that did it.

"Borderline Personality Disorder."

Frankly, I didn't think that was a recover-able diagnosis. But hey, what do I know? Apparently nothing.

I didn't know you could recover from atypical facial pain, either, since it's not a treatable disease. The only thing you can do for it is manage (what a joke!) the pain. That is possible if you can find a doctor un-afraid enough of the DEA to give you enough medication to function on a relatively decent basis for more than 2 or 3 hours a day.

I have to stop driving. I almost went off the edge of the road several times today. My concentration is impaired. I don't know if it's the increase in the Lexapro and Xanax or the pain. What I do know is that I won't put the lives of others at risk to salvage a little of my remaining independence. It's not going to happen.

I'm frustrated and the words are running around my head going 95 miles an hour and they won't slow down enough for me to make sense out of them. I was going to write something that meant a lot to me when the thought occurred to me earlier but now I couldn't remember it to save my life.

Does this mean I'm getting better?

Monday, September 10, 2007

day 716

The Xanax and Lexapro in the higher doses have made the sleeping issue worse. I honestly think I slept half the day away and I wake up as tired as I was when I went to sleep.

I think the ringing in my ears is getting louder, too, which the Lexapro can do. I wonder if it's going to come down to a choice between a slightly better mood with louder tinnitus, which will honestly put me in a worse mood because it's so irritating with my already-acute hearing, or just dealing with the anxiety and compulsive behavior.

This would be easier if I wasn't allergic or sensitive to so many things, but I am, so there we have it.

Next Friday: pain doc. I called for a refill on my Methadone today. I just hope they don't do what they did last time and forget to mail it out.

I just wanna not hurt.

Sunday, September 09, 2007

day 715

I'm awake again.

I have insomnia again.

I hate this.

I cut out two maternity tops for Abby and a dress for me and now I'm sitting here hurting and wishing I could sleep.

Oh and I changed the code on hubby's blood sugar monitor because he didn't change it with his new strips and I need to find out where to get control fluid for it.

Ouch. There's nothing more I can say.

Saturday, September 08, 2007

day 714

I'm not sure if it's the Xanax or the Lexapro but I can feel the pain more clearly now if that makes any sense. I also feel more relaxed but the lessening of tension makes the pain more obvious and I just flat hurt.

Hubby took me to WalMart to get my medicine. I'm not sure if I'm safe driving. Probably not.

I'm still dozing off at every opportunity but I did manage to get a baby gown done this morning and the cap to go with it. I picked up Universal needles while we were at WalMart because the regular sharp ones don't work very well and my thread kept busting.

2 weeks till I see the pain doctor.

Friday, September 07, 2007

day 713 - my visit with the shrink

He looks at me and says..."You look pale. You okay?"

I'm like, "Um, no. I feel like crap and have for almost 2 months. I'm picking at my sores almost non-stop and eating like a horse and I can't sleep unless I need to stay awake. I hurt."

He said, "I thought so. You don't look so good."

We're increasing the Xanax so I take .25mg in the daytime and .5mg at night. I had just been taking the nighttime dose.

The Lexapro taken 20 mg in one shot gave me newer, bigger headaches, so we're trying in 10 mg in the morning and 10 at about 2pm. I told him after 3 days on the couch in misery I cut the things in half and only took 10 and he didn't have a problem with it but he's hoping if I can tolerate the increased dosage it will help with the compulsive behavior.

I think, because I told him I was worried about the pain doc telling me he wouldn't increase my Methadone dose and how I was hurting, he's gonna call them and put in a word for me. He asked for the name again. He's the doc that wrote the nuts letter that got my disability approved.

Once in a while we come across a doctor worth his pay and this is one of them. He's never doubted or questioned the validity of my complaints and he listens to me.

In spite of still feeling like poop, I am glad I went today. I needed a little boost of confidence.

By the way, the broccoli cheese soup at Ruby Tuesday's is nasty.

Thursday, September 06, 2007

day 712

I'm still struggling with the pain and not being able to sleep yet being desperately tired. I do sleep in the daytime, nodding off in the middle of talking to one of the girls or checking emails.

I do hope that the pain doctor will be amenable to increasing my Methadone when I see him again. I really don't even like to ask but I can't live like this. I can't make plans or anything.

I don't have much else to say at this point but I wanted to make an entry, at least.

Thursday, August 30, 2007

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...

Wednesday, August 22, 2007

another migraine - day 695

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

Sunday, August 19, 2007

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.

Saturday, August 18, 2007

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.

Thursday, August 16, 2007

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.

Tuesday, August 14, 2007

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

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

Friday, August 10, 2007


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,'s not helping my head one little bit.

Wednesday, July 25, 2007

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.

Saturday, July 21, 2007


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.

Tuesday, July 17, 2007

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'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.

Thursday, July 12, 2007

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?

Saturday, July 07, 2007

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.

Monday, July 02, 2007

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...

Wednesday, June 27, 2007

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...

Monday, June 25, 2007

day 627'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.

Tuesday, June 19, 2007

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.

Saturday, June 16, 2007

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.

Thursday, June 14, 2007

day 616

I had a mini-meltdown last night.

I'm just so tired of being 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.

Monday, June 11, 2007

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?

Wednesday, June 06, 2007

day 608

I try to remember to write in here at least once a week.

Sometimes, though, it's more redundancy than anything else.

It's been about the same for a month now. I get tired, and I try to get up and do things like the pain doc told me to, but then I get more tired if I don't take a nap, and I'll fall asleep sitting up. I can't be up all day every day. My body just won't let me do it.

I see the psychiatrist next week. Hopefully he'll increase my Lexapro and it will help some with the OCD things I struggle with.

I'd like to do more outside but I'm almost afraid to. It makes me so tired, and then my head...and it's just not smart with the pain I'm in...but I might do some mowing anyhow.

After all, I'm gonna hurt whether I do it or not...

Thursday, May 31, 2007

day 602

I see the psychiatrist tomorrow. I'm hoping he'll increase my Lexapro so when I see the pain doc in a couple weeks I can tell him it's been done and he'll be happy.

I know the pain doc is going to have a fit that I haven't done the physical therapy but we just haven't had the money to do it for the 4 weeks he wanted it done for. I don't know what to tell him other than we can't afford that much right now. I was thinking it was going to be like 3 visits, not 12...and that's $180 we don't have to spare at this point in time.

I am getting my exercise most days, just not walking like he wanted me to. I care for the chicks, and garden, and stuff like that. I'm out there almost an hour most days and some days it's more than that.

I printed out an information sheet for Norbert on borderline personality disorder yesterday so he can understand about the picking thing. It's hard to explain to people that I can't just stop picking at the sores. It's a compulsion. It's something I find myself doing without thinking. Between the OCD and the borderline, I'm actually almost surprised it's not more than just picking. The sores are getting better's just taking time. The more time I spend outside and doing stuff, the better it gets. They used to heal a lot faster when I was working but I'm not doing that any more so I pick more.

I's frustrating for me, too. I don't like how it looks. I'd like to just say I'm gonna stop and have that be that, but it doesn't work that way. Maybe the increased Lexapro dose will help.

I'm trying not to sleep so much, but when I do more, it makes me tired, and I even fall asleep sitting up. The pain doc wants me to get up and do stuff when I feel like that, but between the insomnia and the meds sometimes I just can't control it.

I'm waiting to hear from the Social Security people...that might take till mid-July. I'm just hoping it's good news. I hate the thought of having to fight again to get the disability. We need the money. Where we sit now, if something goes wrong and it is going to cost more than a couple hundred bucks, we're screwed. That worries me.

Oh well...

Tuesday, May 22, 2007

day 593

I'm in pain today.

I started the morning way too early, feeling like someone beat me up. My muscles are sore. The right side of my head hurts. It's not a migraine's an ow kind of hurt, for lack of a better way to explain it.

You know how if you close your eyes tight and squinch them you hear that weird sound? I get that sound involuntarily when I have pain like this. I'm having it this morning and I had it last night.

I've already had a gram of acetaminophen and my Methadone. I'm hoping it will kick in soon.

I was going to work outside a bit today. That may not happen.

I don't like days that start like this. They usually get worse.

Saturday, May 19, 2007

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.

Monday, May 14, 2007

day 585

I woke up with a headache today.

I was thinking it was a garden-variety headache because I was outside too long this weekend, so I took some acetaminophen.

An hour later I knew better, so I took a Maxalt.

It knocked me out as usual. I woke up feeling much better so I went out and tended to the chickens. I watered the garden and weeded it, too. I'm hoping this counts as exercise. I sure think it does...I come in sweating and my heart rate stays up for a while.

I remember the days of just migraines, as silly as that sounds, and I wish for those days least I had a break between the pain instead of it being my constant companion.

Of course, it could be I'll stop fussing.

Sunday, May 13, 2007

day 584

I finally took the time today to go to the Social Security website and check on how long it may take to find out about my hearing and the results.

They can take up to 60 days to make a decision.

They can take up to 30 days after that to send me a letter telling me what that decision is.

It's amazing how they can demand things in such a short time period from people filing for disability and then they can take the time they want to act on it.

I bet it would be different if it was them waiting to hear on benefits that would change how they lived and if they could pay their bills and obligations without running out of money before running out of month.

Oh well...

Yesterday my head hurt a bit more than usual in the morning but some acetaminophen helped calm it down. I actually felt up to sewing a bit. I got the dishes caught up and went grocery shopping.

My kids may come to visit later on today. I need to remember to vacuum the living room and put stuff away so the little ones don't get into things.

Sunday, May 06, 2007

day 577

I've pretty much settled into my 3-times-a-day Methadone routine now.

If I know I'm going to be doing a lot of stuff in a specific time period I take some acetaminophen to keep from getting a bad headache and that works pretty well in addition to my meds.

However, this week I did have 2 on Tuesday and one on Friday. The Maxalt did the job - that and some sleep.

Hopefully next week things will be stable enough financially that I can start going to P.T. Last week was tight, and this week I blew a tire and we need a new rider mower belt. We have to get the essentials first. Between that and all the meds it's a stretch sometimes to get it all done before the money runs out.

I'm hoping to hear soon about the disability. We sure could use the extra finances.

Wednesday, May 02, 2007

day 573

I forgot to take my 4 am Methadone today in spite of setting the alarm and having the pills in the pill boxes.

By the time the alarm went off at noon, it had been 16 hours since I'd had a dose.

I hurt.

It's my own fault...but still, I hurt.

This will take a while to get under control again. I think maybe I'll take some more acetaminophen to give the drugs a little kick.

I've never forgotten to take it before.

There's a first time for everything, I guess...

Monday, April 30, 2007

day 571

I felt good enough today to sweep and mop the kitchen floor using the real mop instead of a Swiffer. It really needed the work. The grandids spilled koolaid on it a couple weeks ago and it was sticky and had other spots from where my son spilled Gatorade when pouring it yesterday so he could have a drink while he and hubby were out taking a tree down in the yard.

I also did cleaning #1 on the side shed fridge. It's old and the people who gave it to us obviously didn't clean it after they emptied it out and there was mildew all over the seal and stuff. It is going to take another good cleaning before I can plug it in and then hubby can keep stuff to drink in it so he doesn't have to come inside when he's outside - it saves on power and that way his cold drinks are out there where he is.

The Methadone dosage is definitely better at 3 times a day than it was at 2. I can feel the difference. It's been months since I've felt up to doing 2 things in one day. Usually it's one or the other, but not both. I'm sleeping better, too. Actually, I'm still sleeping more than normal since it's only been a week that I've been on the increased dose, but I'm hoping that will improve with time. I know it takes a while to adjust.

I'm still waiting to hear something, anything from Social Security. I know it takes time. They're really slow. I'm hoping when the news arrives that it's good. I could use some good news about now. We could use the money, too. We have a lot of stuff around here that needs to be fixed and that money would surely help.

Thursday, April 26, 2007

day 567

Today I had to take a dose of Extra Strength Acetaminophen for the first time in 3 days. I think the increased dosage of Methadone is really helping.

I start PT next week for 4 weeks, 3 times a week. Finding the money should be fun.

Otherwise, it's pretty much the same old same old.

Monday, April 23, 2007

day 564

I saw the pain doc this morning. He upped my Methadone to 5 mg every 8 hours instead of every 12. He wants me to go to bed earlier and stop taking naps. The thing is, if I go to bed at 8 when he wants me to, I won't get to spend any time with hubby in the summer because he stays out till it's dark. I think I'll pretty much keep doing what I'm doing. He won't know anyhow.

He poked and prodded and said I need to see a physical therapist. I told him the one he wants to send me to is too far away and I can't go that far. There's one in Warrenton, about 20 minutes from here, and I can go there if he wants me to go to PT but I'm not driving an extra 40 minutes 3 times a week. Not only is it a bit more of a drive than I can make alone, but it's too darn much gas and we're not rich.

He forgot to give me a script enough Methadone for 2 months so I'll have to call for a refill in 3 weeks. He also forgot the PT referral and after waiting 10 minutes I just went up to the desk and told them to mail it to me.

Now I have a headache from the poking and prodding but it's okay.

I think I'll take a nap.

Saturday, April 21, 2007

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.

Wednesday, April 18, 2007

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, April 15, 2007

day 556

I'm up again.

I think the Maxalt I had to take at 11 for my migraine interfered with the Xanax I take to help me sleep.

While I was up I figured I might as well use up the brown bananas so I made hubby some banana muffins for breakfast. He's doing overtime again today for double pay.

I hate that he has to work so much but with only one income and the bills that have to be paid he feels like he needs to do all he can when they offer it to him. This week's paycheck was pretty skimpy due to the holiday and no Saturday overtime the day before Easter so we're counting our pennies. Living paycheck to paycheck is bad enough but trying to come out of the grocery store having spent less than 2/3 of what we usually do is hard all around. There are things I like to have here for him - and for me - that just didn't happen this week.

I should hopefully find out soon if I was approved for disability. That money would help us a lot. We could get ahead a bit on the mortgage so once he retires we won't have that payment to worry about. Since I know we can live on what he makes, I can put most of my check on the principal and bring it down a lot faster than making the minimum payments does. Most of that is still interest. Every extra dollar taken off the principal lowers the interest payment and shortens the life of the loan. If we're wise I can pay it off by the time he's 70, at least...and he probably won't retire till then anyhow. Maybe I can do it sooner than that. It all depends on what happens in the meantime, like car repairs, house repairs, and maintenance bills. Owning a place, even a mobile home, can be expensive.

While hubby's at work today I'll probably be catching up on my sleep. The insomnia and consequent daytime sleep is frustrating because it gets me all upside down on my hours. However, it is a small price to pay for the nerve pain relief I get from the Lexapro.

I'm hoping to order a couple books on borderline personality disorder to read and study and hopefully learn from. One is a workbook on what is called cognitive behavioral therapy - it helps you learn how to change how you see things that threaten you and put you in a bad place mentally, and by that you can change your reactions to them. There are no support groups out here and no therapists in a reasonable driving distance that have experience with BPD so I guess the best thing to do is go it on my own and get what feedback I can from my psychiatrist. Thankfully I'm motivated to do something about it. I can't just sit here and do nothing. It's not in me to be that way.

Wednesday, April 11, 2007

day 552

Last night I finally dropped off to sleep after an hour and a half.

Tonight I gave up after 2 hours and got out of bed.

I made some banana muffins for breakfast.

I got hubby's lunch ready.

Now I'm sitting here at the computer wishing I was as sleepy as I am tired.

The Lexapro is doing it; I know this.
However, the thought of being without the relief from the nerve pain that this drug brings far outweighs the interruption in my sleep patterns.

No, I'm not thrilled with being up all night and sleeping all day, but it's better than not being able to sleep at all because I hurt so badly I can't lie down.

I'm hoping my psychiatrist got my letter done and out to the ALJ like he said he would by the middle of this week. It really needs to get there on time so my disability can be approved. Otherwise, we're depending on the information I took in at the time of my hearing for him to use when he determines if I'm eligible or not and it may not be enough.

While I am strong when it comes to persistence and perseverance, patience has never been one of my strong suits.

At least I know that.

Monday, April 09, 2007

day 550

It's been 15 hours since my last dose of Tylenol. That's the longest in a month that I've gone without needing to supplement the Methadone. The Lexapro is most definitely helping with the nerve pain.

Yesterday the kids came over and I made it 3 hours before I started getting the warning signs that they needed to go. Usually it's only a couple hours so this was a good sign. It will take me a day or more of rest to recover from it but I was glad they made it and that I could handle having them over. When it was really bad the hardest part was having to cancel holidays and not having more than 3 or 4 people in the house at once. I love having family get-togethers.

This is the hardest part of the disability process...waiting. Waiting to hear, waiting to know...

Friday, April 06, 2007

day 547

I saw the psychiatrist today.

He was rather surprised that I had been willing to try Lexapro after the Celexa fisaco...he said most people will refuse. I told him that as bad as I was feeling I was ready to try anything. He was also pleased that hubby's insurance covers most of the cost of the drug as many insurance companies won't. He gave me a prescription for 2 more month's worth and I don't have to see him again till June.

I gave him the SSDI guidelines for psych disorders and asked him to write a letter for the judge showing him how I fit the criteria for disability. He said he'd do it and get it to the judge by the 16th as requested. I really like this guy. He seems nice and genuine and willing to help me in any way he can.

I got a migraine while I was in the waiting room so hubby had to drive home.

After we got home I slept like a log for almost 3 hours. I was exhausted. Now I need to go cover the peonies and azaleas again so they don't freeze overnight.

It seems like things might be falling into place...what a good feeling.

Tuesday, April 03, 2007


The Lexapro is still helping a lot with the nerve pain.

The only thing is, I'm sleeping my life away. I sleep probably 9 or 10 hours in the daytime and then I'm awake most of the night.

I'm hoping this is temporary, but to be honest it's worth the relief I get from the pain. I'd rather be asleep more than I'm comfy with than hurt so bad I can barely move.

Hubby agrees with me. He's noticed a significant change in my pain level and prefers that to the way I was 2 weeks ago.

It's a tradeoff, I guess, and I'll take the trade if one means the other.

Monday, April 02, 2007

hearing day

Well, the hearing went okay.

It wasn't exactly what I expected, but then again I'm not sure what I expected.

The judge basically told me if I can get my psychiatrist to verify that I have one of the mental disorders listed in the 12.04 listing then I'll be approved with no further brouhaha. Otherwise, he'll have to make a decision based on what I provided him with today.

I see the psychiatrist on Friday and we'll go from there. I have the form for him to highlight and sign and I'm hoping he'll do that with no big struggle.

Other than that I'm doing okay. The Lexapro is helping with the nerve pain and the other pain is about the same.

Just wanted to put this down while I remembered it.

Sunday, April 01, 2007

day 542

Last night was the first time in several weeks I've gone longer than 8 or 9 hours without taking extra strength acetaminophen for pain in addition to the Methadone and SSRI. It was actually 12 hours between doses of medication.

I also haven't slept this late in longer than I can remember. Usually I'm up by 6 getting meds and waiting for them to kick in, or I'm up all night and then sleeping all day. Last night except for the inevitable trips to the bathroom I slept from 11 or so till almost 9. It felt good.

The only thing is that now I hurt from not taking the meds and I'm waiting for the ones I took an hour ago to kick in.

I'm on day 2 of the full 10 mg of Lexapro today. So far the only irritating side effect I've noticed is dry mouth but that's not really a big deal. I just drink more fluids.

Tomorrow is the hearing. I'm torn between excitement and apprehension. I'm hoping it goes well but I'm not going to hang all my plans on that.

I just want to make my point and hope that the judge sees how this is affecting me.

If not, then I'll keep pursuing it until I get approved.

Friday, March 30, 2007

day 540

My hearing is on Monday. I'm hoping the decision is favorable but based on the statistics I know I stand a high chance of being denied and having to take the next step in the process so I'm preparing myself mentally for that.

Tomorrow morning I start taking a whole dose of Lexapro. The side effects with the smaller amount have been minimal so I'm hoping I will tolerate the higher one.

My head is still hurting 24/7 and tonight I found out that driving in the dark is something I should avoid at all costs. I almost put the van off the edge of the driveway and into a cedar tree.

Adjustments of this kind for someone as fiercely independent as I used to be are difficult at best.

Wednesday, March 28, 2007

day 538

Hubby and I refuse to become part of the growing number of couples with "his" and "her" bedrooms. We choose instead to tolerate snoring, twitching, cover-hogging, and any number of other habits in order to share this time together - not to mention body heat in the winter.

However, on nights like this where either the effects of medication or discomfort keep me awake, I seek refuge here in the living room so that he can get his much-needed sleep and I don't lie in bed tossing and turning, concerned I will wake him up and keep him awake. At least one of us should get some sleep during the nighttime hours.

Tonight it is medication-induced insomnia. I'd rather have that, given the choice, than pain-driven inability to sleep. This is a small price to pay for the lessening of the nerve pain on the right side of my head. After the agony of the past several weeks it is almost a relief to be back to the old familiar pain.

I am almost reluctant to increase the Lexapro in 2 more days given the amount of pain reduction the smaller dose has provided. I've experienced almost no negative side effects, and the ones I have had are far more tolerable than I'd expected. Given my ted ency for obnoxious and paradoxical reactions I was hesitant to try this drug, anticipating bad things to happen. It's been a blessing that I was wrong.

It's been a tough year and a half. I'm hoping we're on our way out of the tunnel now. The ALJ hearing is in a week and maybe I'll get some good news from that. I really don't want to have to get a lawyer and all that...we could use the money ourselves. However, if I am denied, I will get a lawyer and I will fight. The simple fact of the matter is that I cannot work. I can't concentrate long enough to be productive, my brain hurts, my behavior is constantly getting me in trouble, and I sleep half my day away to escape the pain I live in. Maybe I can get through to them face to face. I hope so.

Sunday, March 25, 2007

day 535 - lexapro day 3

Interestingly enough, 3 days into my Lexapro therapy at half a dose and I already notice a change in my pain.

It's less of the "raw nerve" feeling and more of the old familiar achy ouchy stuff.

It's ironic when the pain you've lived with is comforting because it means you're getting back to normal.

The only noticeable side effect is horrid dry mouth, but I can live with that. Breath mints, gum, water...I can find things to moisten my mouth.

And I'm a bit tired, and dizzy if I get up too fast.

Nothing major. Just slow down.

I can live with that as long as I can move without feeling like someone's trying to rip my scalp off.

Friday, March 23, 2007

day 533

I was sitting in the doc's waiting room this morning. The TV was up loud. The door was loud. People were loud. The feeling on the right side of my head - kinda like someone had peeled off my scalp and left a big raw nerve just sitting there exposed to the stimulus - got overwhelming and I started to cry. I was trying not to. It's humiliating to do that in public.

I had my sunglasses on as usual. They took me in the exam room and I was still crying. My BP was 154/92. My pulse was 126. They turned the light off like I asked and left the door cracked.

The doc - man, I don't know what came over him, but he has NEVER been so nice to me. He lowered his voice, he left the light off...we talked about how I'm feeling and how frustrated I am at the pain and my ignorant neurologist and that he said if I got more drugs things would be fine - he wasn't very happy about that at all...and he said that since I'm off the antidepressants totally now and the pain is so much worse obviously the SSRI was doing something to help desensitize the nerves on that side of my face as well as helping with depression. He started me on 10 mg of Lexapro and wants me to cut it in half if it's too much - this to get me through till I see the psychiatrist in 2 weeks. He wanted to know why I hadn't been back to the psychiatrist since the Celexa was so bad and I told him hubby has to take me everywhere and I can't have him taking a day off every week to drag me to yet another appointment. He needs his job if we are to eat. It's just that way. He told me that if they can't work with the nerves that 100 mg of Methadone a day won't help. I told him I'll do what he asks me to. I'm trying my hardest...and I think him seeing me like that today, while not so easy on me, was good for him. It showed him I'm not just putting on a show.

Hubby brought me home so I could get back into the quiet and darkness that makes it easier on me. He is on his way to WalMart now to get my prescriptions filled. I don't know what I'd do without him.

So basically the Methadone stays the same, the acetaminophen 1000 mg every 6 hours stays the same, and we see what the Lexapro does. I just hope it helps. I am so tired of this...

I'm gonna go rest now. Doctor days always take a lot out of me.

Tuesday, March 20, 2007

day 530

The last two nights have been sleepless, and then all I want to do all day is sleep. This is not good. Hubby is sick and in the bedroom snoring. He needs his rest so badly because he has to work so I came out here.

I'm worried a bit about the hearing though I honestly don't expect a good outcome. I do hope for one, but I am far too much in touch with reality to think it's going to happen. I will give it my best though. There's always a chance.

I'm also concerned about the pain management doc and his reluctance to provide me what I need for adequate pain relief. It really bothers me and I'm afraid if I speak my mind to him he'll tell me to find someone else.

It really stinks being in this situation.

Sunday, March 18, 2007

day 528

I think I may have a sinus infection. It's kinda stuffy feeling in there and I wake up all congested and can't breathe.

The thing is, it's hard to tell because I already hurt all over my head.

I may keep the van tomorrow and see if I can get in to see the doctor. It's been dragging on long enough...maybe I need some antibiotics.

The pain level still stinks. I have an appointment on Friday and I'm concerned that the pain doc is gonna tell me either to suck it up or find another doctor. Finding him took some time as it was. I hope he doesn't dump me. Even as mediocre as it is, the relief from the Methadone is better than nothing.

Wednesday, March 14, 2007

day 524

Yesterday I got a call from the pain management doc's office telling me they are sending a copy of my records. I put a check in the mail today for them - had hubby drop it off on his way in to work.

The psychiatrist's office is sending a letter saying what I'm being treated for, what they have tried medication-wise, and I think maybe they're putting in there that I can't work in my present state of mind. I'm not sure on that but I did ask for it.

I still haven't heard back from the neurologist's office about my request for records from there. I'm hoping I'll get them at least in time to look them over before my hearing.

I'm going to have my kids each write a letter for the judge telling him how things have changed for me from their point of view...cancelled holiday dinners, no going places, how they have to be quiet in the house when they come to visit, how I don't do much of anything but stay here and rest. Anything they can put in there will help.

I'm doing the best I can to get this ready. Maybe I can get it approved without having to pay a lawyer to help me get what I've paid into the system for since I was 16...30 years of payments. I shouldn't have to fight like this. It takes such energy out of me that I sleep the afternoon away from exhaustion combined with frustration and then I'm up all night. Add that to the med issues and I'm a big mess.

The Celexa is out of my system now and that is a good thing. I'm not sure what ideas the psychiatrist will have the next time I see him. I know it's frustrating for them when I react like this to drugs, but it's even more frustrating for me because I'm the one it's happening to and I get the benefit of their frustration ie., them telling me I'm not working hard enough for myself, or saying they think it's all in my head, or I'm asking too much...

And if they deny me I'll appeal again...and keep going till I get what I need. All I ask for is what is due to me. I wish to God I could work. I'd love to work again. If I can't even keep the house up the way I used to, how could I go to work for 8 or even 12 hours and focus on patient care, med administration, and recording things in legal documents? It makes not one iota of sense.

Sunday, March 11, 2007

day 521

I am resigning myself to the thought that being in this kind of pain may be how I spend the rest of my life.

I'm tired of fighting tooth and nail to get medication to help me with the pain and being looked at like I'm a druggie. I'm not addicted. If the pain was gone today I'd flush the drugs in a heartbeat and I'd be out looking for work tomorrow. The pain doctor tells me to do more yet refuses to increase the medication when the added activity increases my pain level.

The antidepressant issues aren't helping much either. It is tough when you can't take so many things that are supposed to help. It makes the moodiness more intense and I'm on the edge of tears most of the day.

I don't know...that might help me when I have my hearing. I certainly won't have to worry about them thinking I'm overly happy...

I need a nap.

Thursday, March 08, 2007

day 518

I need an umbrella.

The lawyer I chose called this morning telling me there is no way they can be ready for my hearing date. I am now on my own.

I have called 2 of the 3 doctors I see to get copies of my records to take to the social security office as well as for my own use. Now I have to find out what they are going to charge me for that. They are sending me a release to sign and they will let me know the cost before they send the papers out. I have to wait till the other office opens before I can make the same request of them.

This should be interesting.

I am upset now...they told me they could do this, and now they can't...what a load of crap. Now I get to go with hubby and I and it's us against the world.

Oh well...story of my life.

Sunday, March 04, 2007

day 514

I think the Celexa is making me sleepy, but that's okay.

I haven't noticed any other negative side effects, and that's good.

My head is not happy with me lately. I'm not sure why but the pain level is up again. I'm glad that in a couple more weeks I see the pain doctor again. Maybe I can get him to increase my dosage just a little.

The brightness of the sunshine doesn't help, either.

I'm going to get some UV-blocking film for the windows and hubby says he can put it on for us. That will help with the light sensitivity issue.

I just wanted to make an entry before I forgot. I need to keep track the first several days or weeks on a new drug in case anything happens.

Friday, March 02, 2007

day 512 - better

The psych doc said I'm having a major depressive episode. It makes sense now.

Tonight I started Celexa. We'll see how that goes.

He also gave me plenty of refills on the Xanax.

He wasn't very impressed with the neurologist's assessment of things. I don't think he agrees that if they drug me up enough I can go back to work.

I see him again in a month.

I hope this pill works. I'm really truly starting to feel like a guinea pig.

In other news, I filled out the papers for the attorney today. I guess they get 25% of back pay up to $5300 if you get approved by the first hearing and if you have to go past that the cap is lifted. At this point I really don't care. I just need to have something coming in besides bills. Hubby's not going to be able to work forever. He's 12 years older than I am. We can't live on just his social security, either. Something has to give. If I could work, I'd go back tomorrow. I just can't see it right now with the pain, lack of concentration, insomnia, and depression being what it is. It doesn't make any sense.

At least we're getting somewhere on the lawyer front. One step at a time...

Thursday, March 01, 2007

day 511 - meltdown

This has been a bad morning.

I guess all the crap of the last 511 days has gotten to me and what the neurologist said hit me pretty hard, him blowing me off because I now have a psych diagnosis in addition to the neurology one, and telling me he thinks if they get my "anxiety" under control I can go back to work.

I snapped at my hubby and I ended up crying like a baby. I was just blubbering at one point. I told him I was scared he was going to tell me I had to leave, that this was too much for him. I told him I was scared he was going to go to bed one night and not wake up. I told him I was sick of being sick and feeling useless.

God bless that man...he looked at me, made me look at him, and I'm all teary and snotty and blubbery, and he told me that when he made that promise in sickness and health for better or worse till death do us part...he meant it. No going back.

And he called in to work and sat with me till I fell asleep so that I wouldn't be alone.

Now my head hurts from the crying and all the snot that builds up in my head when I do that.

What a mess I am. What a big old mess.

Being sick sucks. Being chronically ill sucks worse. I wouldn't wish this on anyone. Nobody.

Tuesday, February 27, 2007

day 509

The neurologist's visit blew dust.

He was 1 1/2 hours late getting there and offered no apology. I was sitting in the coldest exam room in the office listening to a confused male cardinal repeatedly hitting against the reflective surface of the large window which was, coincidentally, across from the tree he had chosen for him and his love. Apparently he was having trouble distinguishing tree from glass and cardinal from reflection.

Then he proceeds to tell me that all he can tell the disability people is that I have atypical facial he was of the mindset that if they pump enough drugs into me I can work again...that if they can manage the anxiety I've lived with my entire damn life and give me a high enough dose of Methadone I can go right back to being Nancy Nurse in spite of the sensitivity to light and sound and the tinnitus I deal with on a constant basis.

Doctors can be real asses sometimes.

So now I'm checking hubby's list to see if there's someone else maybe a bit closer or a bit more sympathetic and understanding of chronic pain caused by an invisible attacker.

He wasn't like this last time. In fact, he asked me last time I was there if I'd filed for disability yet. I don't know what kind of bug was up his butt but I really don't need that right now. Not at all.

I talked to a real honest-to-God lawyer on the phone yesterday. His wife, it turns out, has trigeminal neuralgia, so he understands some things a lot of other people wouldn't. He says he thinks we can do this in time for the as-yet-unannounced hearing. He said in Missouri the average wait for a hearing after you file an appeal is 14-18 months so it could be very soon. He also said the big firm I had initially chosen might not be able to get my stuff done quickly enough considering I haven't even talked to a lawyer yet. I think the selling point though was knowing his wife has similar pain to mine. It makes a difference.

I feel horrible. The pain is bad today. I was wishing more than anything that someone was with me because driving in my state of mind and level of pain was a challenge at best. I just stayed in the old-fart lane.

I am frustrated because I think that maybe the neurologist thinks now that I have a diagnosis of PTSD and OCD that this is all in my head. He's convinced that if they get me on psych drugs and pain drugs it will all go away. Well, excuse me, but I don't think he's right, and I'm not going to let his opinion determine what I do. I know that I'm in pain; whether or not it's purely psychogenic or if it's physiologic is inconsequential. If the pain was caused by an eventual snap of some kind due to years of living with 3 separate anxiety disorders, then so be it...the fact remains that the pain is real and it needs to be handled in a compassionate manner, and my neurological status is still that of a patient with atypical facial pain no matter what caused it. I felt like he blew me off today and it really upset me. It's got me in a monster mood. I hate it when doctors treat ANY patient like that. I know he was 90 minutes behind and he needed to catch up and not all his patients were being as patient as I was, but still that was no reason to blow me off. I saw him for less than 5 minutes after that horrible long wait with cold air blowing on my head and face and that, of course, compounded the pain...

What a mess.

I look around sometimes and I feel like my own struggles are so trivial compared to those of others...and then on days like yesterday when it finally hit me hard that I can't do factory work, or anything else that requires concentration and focus for more than 1 or 2 hours at a time, it really hurts. It sucks that my hubby has to work so hard. It hurts that I can't make money to help him out.

The nurse practitioner student who interviewed me this morning didn't help, either...she kept telling me how depressing this all is. Like I didn't know. Like it was a flash of insight. I wanted to ask her to go but I know she has to learn so I tried being patient with her and she ended up admitting I was too complex for her. That, too, was a real ego-booster.

How do I keep my faith?

Because God never promised me an easy time of it.

He only promised I wouldn't be alone when I hit the walls and the fire and the rivers overflowing with sewage and the other struggles. He promised to hold my hand, not take me over or around or behind.

Ecclesiastes says the sun shines on the field of the wicked and the field of the godly, and the rain falls on the just and the unjust.

I guess some of us just get muddier fields than others...or dustier fields...or fields with crappy dirt...

I wonder how God sees me, with all my dreams over there in a heap as I struggle to get from day to day without falling to pieces...which, for the past few weeks, has been a real challenge...

Monday, February 19, 2007

day 501

I never thought I'd hit this day...but here I am.

The headache faded by the end of Saturday and by Sunday morning it was back to the level it had been when I first started the 25 mg pills of Zoloft. In fact, I felt good enough to go to the mall yesterday for the first time in months. We didn't stay long...just over an hour, I think...but it was nice to get out.

The insomnia remains a companion even though the new pain is fading fast. This is the 4th night in a row I've watched the clock change hours instead of sleeping, so tonight I decided the heck with it and just got up. I'm nursing a large mug of hot chocolate, sitting here in my flannel jammies and a fleece robe while the house warms back up. We turn the heat down at night - why bother heating a space nobody is up in?

I see the neurologist next Tuesday and the psychiatrist that same Friday. That means 2 doctor's appointments in one week. Yippee. I need to see my neurologist to let him know what's going on with the pain medicine issue and how we're making progress in that arena, and to let him know I'm seeing the psychiatrist now, and to ask him for a letter for the lawyer that tells them I am totally disabled and unable to work.

Once I get that letter, maybe the lawyers will actually contact me and we can light a fire under this disability thing. It would be nice to get some of the money I paid into the system for an eventuality of this type. They surely didn't ask if I wanted to pay it...I shouldn't have to get on my knees and beg to get it when I need it. It's ludicrous what you have to go through to get back what you've paid in when you get sick and cannot work. I would gladly trade places with the person who tells me I can still work...even for just a week, to let them live in the pain I'm in. to juggle doctors and deal with bill collectors and keep track of pain meds and other meds and try to manage in a world that cares little for people who cannot tolerate light, sound, and smells well. It's a tough place to be when you're ill, especially if it is an unseen illness that interrupts your life.

Hopefully soon the insomnia will go away and I can go to bed at night and sleep till morning again. That would be nice.

Saturday, February 17, 2007

day 499 part 2

It's the Zoloft causing the increased pain. I went back to bed after I wrote my earlier entry and when I woke up the head pain has increased to where my eyes even hurt and all I want to do is sleep. sleep, sleep.

I hate this.

I didn't even get high enough to see if it would help the OCD. That doesn't happen till you get above 100 mg a day.

Oh least if I stop taking the stupid pill the pain will go back to where it was...

I'd better add it to my list.

day 499

My head has been worse for just over 2 weeks now. I'm not sure how much, if any, of it is related to the Zoloft, but I do know that headaches are a side effect of this medicine. I increased my dose from 25 to 50mg last night so we'll see. If it gets worse I'll know that's what it is.

I'm just tired of it all. I'm tired of my hubby having to work so hard. I'm tired of people treating me like crap because they think I'm a junkie. I'm tired of not being able to work. I'm tired of living paycheck to paycheck and deciding which bills to pay with which check. I'm tired of the bill collectors calling.

I hope the lawyer can do something to move this along.

Saturday, February 10, 2007

day 492

So I've been on the Zoloft for a week now and no bad reactions. So far, so good. However, I'm on the lowest dose, only 25 mg. I don't increase it till next Saturday. I'm hoping it works, but I'm not holding my breath.

I got a letter from the lawyer. They want a letter from my doctor saying I'm disabled and unable to work before they'll look at my case. That means next week I need to make an appointment to see the neurologist and get that letter. No biggie...he'll do it without blinking.

My head has been acting up for a couple weeks now, with me having to take Extra Strength Tylenol for backup relief at least once a day. I've been living in the bat cave again because the light is bugging my eyes. I'm not sure if it's stress, or increased activity, or the weather, or my sinuses, or what. I just know I don't like it. I wish it would stop.

The ringing in my ears is worse, too. I hate that. It's like it's never ever quiet here any more and it makes it hard to watch TV because I can't hear but if I turn it up it hurts.

What did I do before this?

I can hardly remember any more, except it was a lot more than I do now.

Friday, February 02, 2007

day 484

So the appointment with the shrink went well.

He wants me to try Zoloft and we're starting at the lowest dose. If I tolerate it we'll increase it slowly to see if we can get some of the OCD symptoms under control as well as the depression. He also acknowledges that I have PTSD.

Actually it was a bit of a surprise. There was no real therapy...just a gathering of information.

Of course, I'm there because I have to be in order to get my Methadone, but I think it's probably a good thing anyhow.

After they refused to treat me at that ER on 9-1 of last year I got a bill from the doctor. I see something wrong with this picture. He's billing me for services not rendered? He refused to give me Dilaudid...tried to give me a shot of Toradol...and then after I told him to forget it, that the Toradol wasn't going to touch the pain, that he needed to call my neuro...he told me he'd call, but still wasn't going to give me a I walked out. I'm not paying that jerk for treating me like a junkie. He can eat his bill. He oughta be glad I didn't sue him for refusing to treat me, for libel, and for malpractice.

I applied online to talk to the Binder and Binder people. Maybe they can help me with this disability mess. That's what they specialize in, or so they say.

I've had a headache the last two days. It's probably stress. Scratch that. It IS stress. Who am I trying to fool?

So now the diagnosis list is as follows:

atypical facial pain
occipital neuralgia
chronic migraine
chronic depression

Maybe I can get disability now.

I hope so.

It's hard living on one income when it's between one-third and one-half of what you were making before.

And still, somehow, we owe on our taxes.

I still haven't figured that one out.