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.