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.
Friday, March 30, 2007
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.
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.
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.
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.
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.
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.
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.
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.
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.
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...
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.
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 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...
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.
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.
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.
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.
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
allodynia
chronic migraine
photophobia
phonophobia
OCD
PTSD
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.
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
allodynia
chronic migraine
photophobia
phonophobia
OCD
PTSD
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.
Monday, January 29, 2007
day 480
0720 - Heck of a migraine. Took a DHE.
I go see the shrink on Wednesday.
The visit with the pain doc went well. He was in a good mood. I don't go back for 2 months now.
I need to call, though, because he only gave me enough Methadone for 30 days.
It's hard to believe I've been in constant pain this long. How do people live with pain for 20 years?
Maybe I'll find out.
I go see the shrink on Wednesday.
The visit with the pain doc went well. He was in a good mood. I don't go back for 2 months now.
I need to call, though, because he only gave me enough Methadone for 30 days.
It's hard to believe I've been in constant pain this long. How do people live with pain for 20 years?
Maybe I'll find out.
Sunday, January 21, 2007
day 472 - been sick
I've been sick for 2 weeks now. Nausea, no hunger, just feeling yuck. I can't eat much and I mean it. Chicken noodle soup, saltines, ritz crackers, herbal tea...that's about it. Everything else just makes the nausea worse.
I'm losing weight, which isn't necessarily a bad thing, but this isn't the way I'd choose to do it. I'm going to see if I can get in to see my doc tomorrow. If not, I'll probably go to urgent care.
I have an appointment with the pain doc Friday, and then the next Friday I see the psychiatrist.
Other than that things are pretty much as they have been. It stinks. Haven't heard thing 1 about the disability appeal process. It's been almost a year. Thank goodness hubby has a good job or I'd be homeless.
I'm losing weight, which isn't necessarily a bad thing, but this isn't the way I'd choose to do it. I'm going to see if I can get in to see my doc tomorrow. If not, I'll probably go to urgent care.
I have an appointment with the pain doc Friday, and then the next Friday I see the psychiatrist.
Other than that things are pretty much as they have been. It stinks. Haven't heard thing 1 about the disability appeal process. It's been almost a year. Thank goodness hubby has a good job or I'd be homeless.
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