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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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...

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.