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 though...it'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 dunno...it'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...

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 hurt...it'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.

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.

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 again...at least I had a break between the pain instead of it being my constant companion.

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

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.

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 migraines...one 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.

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...

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.

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.

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.

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.

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.

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.

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.

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...

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

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.

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.

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.

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.