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 pain...today 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 well...at 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 narcotic...so 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.