plodding along

Once again I am limited by the medication I take. The new sleeping pill is great. It helps me sleep better than I've slept in a while. However, since it is a benzodiazepine like the Xanax is, I really have to be careful how much, where, when, and how fast I drive or do other things. It has quite an effect on my concentration and reaction time.

I now go no further than the closest larger towns (about 15 miles) without an escort, and when I do go to town, I drive no faster than 45 or, on a straightaway I know well, I can go 50 miles an hour.

The effect on my personality and psyche of losing this part of my independence has been significant but I have realized that I need to be careful and take responsibility of what I do with what God has given me. If that means I don't go tearing off to the mall any time I want to, then that's what it means. I am learning patience - again. I knew I wasn't done with that yet.

I'm also making little mistakes I hadn't made in a while like bonking my head on things, dropping things, cutting my fingertips while chopping up food, and the like. It reminds me I need to slow down and enjoy myself and not be in such a hurry.

There are lessons all around us if we just stop and listen...

I just realized

I'm going into my 4th year with this wonderful disability.

I know a lot more about it than I did, which is still pitifully little.

That is because there is pitifully little to be known.

Without the Provigil, the sleep issues are still right up front. I'm going to try to go to bed here soon and see if I can get some sleep. I have been at least making the attempt several nights a week. The thing is, I've been picking a lot now too and that doesn't necessarily help. If I can't sleep and I go to bed, I tend to lie there and pick. My skin is a mess. It's from little bug bites and cat bites and scratches and goodness knows what.

I see the psychiatrist on Wednesday. I had to reschedule last month because of a honker headache. Oh, they're always fun.

The more stress I'm under, the worse the symptoms of the OCD and borderline personality disorder are, and they're not the best right now. Picking, obsessing, procrastinating, self-degradation...That reminds me. In a minute I need to look something up.

The situation with Becky is still bad. The other two and I are getting along, but not necessarily all that well with each other.

It's hard to believe I've been in the midst of this for 3 years now. I didn't think I could handle it before. I guess I proved myself wrong.

med adjustment

Dr. P increased my methadone yesterday. I'm taking 10 mg 3 times a day from now through fall since I'm more busy in the summer due to gardening and the like and my pain has increased a little.

I did manage to drop off the prescription yesterday, but I didn't wait an hour to pick it up. I need to get it next time I'm at WalMart.

I had a few extra pills so I increased the dose yesterday. While the pain is notably better already, I've also noticed a couple other side effects I'm not really thrilled about.

1) I am dead tired almost all the time. I dozed off twice today and spilled my soft drink all over my lap. The first time I also spilled some on the floor. These incidents both necessitated a change of clothes, which is embarrassing. Thank goodness I was at home and not out and about.

2) I forget things. I had something to drink here on the end table by me tonight and went to the refrigerator after doing a couple small things and got more to drink and brought it over here, only discovering that I already had something here when I got to my chair and was ready to sit down.

3) I'm not going to be able to drive for a while at least. The fatigue makes it hard for me to concentrate even long enough to drive to the store. I don't want to take any chances with my life or anyone else's while under the influence of this medication. I can wait to do my shopping and errands until I get a ride.

I'm hoping I'll adjust to this so I don't have to count on other people to get me to the store and back. It would make it very hard to do the things I do on the spur of the moment, like when I run out of thread and go to the store quickly to get whatever color I need and things like that.

Oh well...we live with what we're given.

bad couple of weeks

The pressure of the Mississippi River Valley on my head, and inside it as well, has made the past couple of weeks pretty miserable for me. The pain level on my right side is up from a 4 to a pretty steady 4-5 again and I've had to take 1/2 a Lortab a couple times and I took a Maxalt on Friday, I believe. I haven't had a migraine in a while. I wasn't even really sure what this was and was just trying to cover all my bases. Tylenol, then Vicodin, then Maxalt. Progression of reason.

Going outside even to do the chicken stuff has become a greater effort. It's harder to breathe in the increased humidity and by the time I've been out for say, 10 minutes the sweat is pouring down my legs and forehead and I'm feeling a bit sweaty and wondering if I chose the wrong profession.

I see the pain doc this week on Wednesday. I'm going to talk to her about the pain and see if she'd rather have me back off on my activity or increase my dose from 25mg to 30mg a day to compensate for doing more because I feel a bit more human.

I need to get my iron level redrawn. I need to schedule my mammygram and a bone scan. I need to stop by my PCP's office and get more OAB samples so we can find one that works for me, or at least a reasonable facsimile.

I also need to go to the ophthalmologist and take a sample of my needle and thread and handwork and tell him I need the bottom part of my lenses to enable to do that, which it is not doing right now. I can't thread a small machine needle till like the 5th or 6th try. That's not enough. That's why I got the progressive/bifocal lenses. I need to be able to do this. It's part of my therapy.

I miss my life.

emotional

Some days I am sad because of my illness. It's not anger or resentment, but it is sadness because I am missing so many things that I used to enjoy.

My older daughter enjoys playing outside in the kiddie pool with the boys. I can't do that. I am too sensitive to light to tolerate time outside except when necessary. They even go to the city pool once in a while in the summer. I wouldn't tolerate that either. I remember how much I used to enjoy watching my kids in the pool and playing in the water with them and to be missing that with the boys saddens me.

I miss family get-togethers. Barbecues, holiday celebrations...they all have to be observed differently now than they used to be.

I used to really enjoy cleaning my house and seeing it dust-free and smelling the Pine-Sol in the kitchen. Now I have to split up cleaning chores and it's not quite the same.

It's funny the things we miss when life changes.

not necessarily unexpected

My appeal for the Provigil prescription was denied. The insurance company will not approve it for use to counteract other meds that cause fatigue regardless of allergies or any other reasoning.

Oh well.

It seems sometimes that my life just wants to head in that direction no matter what I do.

However, I am still alive, and still able to love and be loved, and I can still dress myself and go to the bathroom and brush my teeth, and life could be a lot worse, so I will fuss a little and then I will move on.

It's the only reasonable thing to do.

In a life this out of sync, someone needs to be reasonable. I guess I'm it.

pain, pain go away

I've had this increased pain thing going on for a couple days. My right jaw hurts and I'm getting the icepick stabbing sensations either in the upper part of my jaw or in my right eye as well. Last night I had to sleep in the recliner because I couldn't lay down. Laying down increases blood flow to the brain and when I'm hurting like this that is one of the last things I need. I wanted to go grocery shopping but had to accept that this is not one of the days I'm safe going alone.

I go in cycles with my sleep. For a few weeks I won't sleep more than an hour or two a day or night....everything is all fractionated and I just get all whacked out. I fall asleep quickly and wake back up just as quickly.
After a few weeks like this I then switch into a mode where I can't get enough sleep. That is where I am now. It started on Monday, I think. All I want to do is sleep. I sleep most of the day and then sleep at night for a few hours, too. I'm tired, tired, tired. I know it's because I've been so sleep deprived that my body is screaming for rest. It's frustrating; another thing to add to the list, I suppose.

It hurts to keep my eyes open.

It hurts to close them.

It hurts to sit up.

It hurts to lie down.

It hurts to recline.

If I don't keep my feet up, my feet swell from the Methadone.

If I do keep them up, I fall asleep.

I've gained back probably 60 pounds of the 100 I lost after my gastric bypass surgery. It breaks my heart. It's hard to exercise because it hurts me to do aerobics and there's not really enough room in here to walk around a lot. Exercising outside is out of the question because of my allergies. I'd like to get a treadmill but I'm hesitant to spend the money in case I don't use it and it ends up gathering dust. I'd like to think I'd be faithful with it. It would at least give me an option here in the house.

I'm just feeling frustrated right now. I'm frustrated because I'm sick and I can't work as a nurse and my husband has to work so hard like he's done all his life just when he was looking forward to retirement. I'm frustrated because my schedule is all upside down and I need to clean but I just don't have the energy. I'm frustrated because this is not my dream. My dream was paying off the house early so hubby could retire and us taking some time to enjoy our lives together instead of struggling day to day like we have since we were young, each of us on our own paths.

I think sometimes for some people it's easy but I've never been there and I probably wouldn't know what to do if I was. My whole life has been a struggle and it certainly doesn't look like it's going to stop now.

I think those of us who have to fight for every forward step appreciate it more. It means more if you can't just go do it.

I need a vacation. An offensive odor free, noise free, half clothed implant loaded body free, alcohol free, smoke free, quiet, moderately dark, soft sheet, gentle breeze, water lapping on the shore kind of vacation.

I don't know if they even make those kinds of vacations unless you're rich, which we're not.

Ah well...one can dream.

status quo

I did finally make the appointment with my PCP. I see her for my Well Woman physical next Thursday. I'm frustrated because of the weight I've put back on though I know a lot of it is either the disability preventing me from exercising or the meds which actually have weight gain listed as a side effect...still, I'm upset about it. I guess I need to get over it.

I got a piece of paper yesterday from the insurance company - a release authorizing my pain doc to participate in the appeal for the Provigil on my behalf. This is gonna take half of forever. Anyhow, I filled it out and sent it back. We'll see what happens. I figure I don't have anything to lose. I don't have it now and if they don't authorize it I still won't have it...all I can do is gain.

My laptop is helping me out a lot because now I can check my email and such without ending up with mammoth-sized feet from the swelling. It's funny how the Methadone causes that. It's not something I would have even thought of with a pain med. The trade-off is worth it, though. I'd rather have fat feet than be in more pain.

When I think of where I was 3 1/2 years ago and where I am now it's staggering. My life has changed so much...there is so much I can't do that I used to take for granted...things that never meant much are so precious to me now. I cherish every good minute now because I don't know when the pain of a migraine or exacerbation will happen.

I treasure my blessings even in the middle of the pain.

still sleepy

I really need to make the appointment with my PCP. I nodded off this morning while I was cooking hubby's meals for the rest of the week in the form of lasagna and didn't wake up till it had been in the oven 3 hours and 15 minutes instead of 45. The noodles were like rubber. I had to toss it. It was inedible.

We can't afford to waste food like that. Hubby has now made a rule that I cannot bake stuff unless someone is home to check on me. It's a reasonable rule, but it hurts nonetheless. It's ridiculous that I can't even stay awake for ten minutes. I had already made the dish and put it in the oven. I got up to go to the bathroom and before I sat down I looked at the timer and saw that I had 10 minutes left on it. I fell hard asleep that fast and slept for 2 hours and 45 minutes.

I haven't seen the doc in 2 years anyhow...I guess it's about time.

I just don't like doctors, even the ones I have to see on a routine basis.

day 963

Dr. P, my pain doc, offered to write a letter to the insurance company to see if she can get me approved for Provigil so I can be up in the daytime and sleep at night like I should be doing. I'm hoping it works. This upside down routine is bugging me a lot.

My psychiatrist suggested I might have narcolepsy because I have been falling asleep while sitting up, while eating or drinking coffee and the like. I will mention that to my internist when I see her this week.

I'm glad I'm on Methadone right now. I'm sure it's helping with my badly bruised tailbone. It hurts like heck even with the pain meds.

I am so tired...

May 7

I see the pain doc today at 10.

I'm going to tell her they denied the Provigil and see if she has any other ideas. It was nice when I was taking that pill because it kept me awake all day and then I could sleep at night but that isn't happening any more.

I have to figure out a new combination of early afternoon meds. Right now the ones I take in the afternoon make me so sick I want to throw up. That's no fun at all.

I still have the edema from the Methadone but it's not as bad because I make sure to keep my feet up as much as I can.

I'm starting to get really tired now after being up all night. I think maybe I'll go take a nap for a while.

This is no fun at all.

It's been a while

I haven't written for a while.

Things have been pretty much the same. I'm still not sleeping on a decent, regular schedule. It's more like a few hours at a time and then in between I'm always tired.

I'm also frustrated. I wish I could work. I'm tired of being close on money and having to watch pennies. The house payment will be late this week. It's only two days, but I don't like being so darn tight. I'd much rather be working and feeling like I'm doing something than sitting here and getting a check equal to one week's gross pay. That just really stinks.

My head still hurts. The past week or so it's been a little more than before, but I think it's an allergy thing. I dread making yet another appointment with yet another doctor; I see enough of them as it is.

While we're on that subject, I need to see a dentist, but with the facial pain I'm more than a bit apprehensive about that. I need to see my primary doc. I haven't seen her in 2 years or so.

The Methadone still has me swelling up. It's a lovely feeling. I feel like a cow.

I'm a bit depressed. I guess that's obvious.

still not sleeping well

My sleep cycle is still a mess. I've decided to take it into hand one way or another.

Last night when I took my bedtime pain medicine I also took 2 extra strength acetaminophen and 30 mg of Restoril. I had managed to get everything done that needed doing and we were in bed by 10 o'clock. I fell asleep pretty quickly and slept straight till 3 when hubby woke me up. I made him breakfast and was asleep in the recliner almost before he left the house at 4:30 to head for work. I slept till 7:30. I'm still tired, but not quite as bad as I was. It's going to take some time to get it going, though. I have a lot of catching up to do.

Today I have to go check the mail and then go to the bank so I can get some cash for hubby's break at work. He doesn't use much - just about $1.50 a day. After that, I will come back, check for eggs, give the chickens fresh water, and then I'm going to take a nap.

It's hard when the meds you need for your pain keep you from sleeping and then you start suffering from that. One or the other....that's certainly a tough decision.

Other than that all the meds are working well. All I can say is it's about time.

can I get any more tired?

Man, I gotta get some decent sleep.

My driving is off, my thinking is screwy, and I keep nodding off sitting up.

I can't spell for beans.

I hate not being able to sleep. Even 30 mg of Restoril only gives me 4 hours. This is ridiculous.

I'm going to try and sleep. I need to sleep. I have to sleep. I'm starting to worry me.

day 919

The new Methadone dose is working pretty well.

My sleep schedule is all screwed up but I guess I'm gonna have to live with that. I got a sample of Provigil but it's not FDA-approved for sleeping difficulty due to taking narcotics for chronic pain so the insurance says it won't pay. I'm going to appeal. It can't hurt. After all, I already don't have it. What can I lose?

They say to try Ritalin or Adderal or another stimulant. Yeah. That sounds like tons of fun.

On the upside the pain relief is decent enough I can do some sewing agian. That's nice.

Now it's time to fire the neurologist and get another one who doesn't think that just because I'm certifiably nuts I also have no pain issues at all. One doesn't necessarily mean the other.

I don't think they've figured that out yet.

2 in 2 days

The 20th and 21st I had migraines. They were, I believe, 2 separate migraines. They were about 24 hours apart. A Maxalt just about did the trick on both of them. However, I now need a refill, and I hate paying the copay for these orally disintegrating tabs because they are far from cheap. Still, it's better than hurting.

We're supposed to go to Abby's for dinner tomorrow. I'm going to have to make sure and take it easy so I can make it. Becky and her family won't be coming but JR will. His girlfriend is working. All this family stuff and some people not wanting to come if others are there is a big fat pain in the butt. I'm pretty sure a discussion about that was at least partially responsible for triggering the first migraine if not both of them.

I'm actually tired. I may get some sleep tonight. I forget to take the Restoril for some reason...I need to move it and just take it every night.

I'm just so tired of taking all these drugs...

addendum to the great sunglasses search

After riding in the truck for 2 hours on Saturday to pick up our rescue rooster, I had to take off my Cocoon overRX sunglasses. The pressure caused by the weight where they rest on the frames of my own glasses was causing my head to hurt once again.

I have come to the conclusion after this testing period that even the best of the overRX glasses are okay for short-term wear, but not so great for longer periods of time - at least for people suffering from facial pain. For others, it may well be different. This is my experience only.

This week I will be contacting the company I was referred to by LiveEyewear and I will check into having prescription lenses put into the Widelines. Hopefully this will solve the problem and I will be done with it all.

the great sunglasses search part 2

The owners of the company that sent me the Cocoons and Vistana overRX sunglasses graciously sent me two more pair in an attempt to help me find a pair to fit over my glasses as well as one I can have prescription lenses put in so I can wear them without my regular glasses underneath.

The Aviator XL Cocoon sunglasses, incredibly enough, fit! They cover the glasses and arms without pinching or weighing my own frames down so much that it hurts. I can wear them for over an hour without discomfort or a feeling of pressure on my head and face.
Hubby does have one pair of Fitovers that is lighter than the Cocoons but they are too tight for me. I am very pleased with the Cocoon Aviators and the fact that they actually fit and don't cause me discomfort.

The Cocoons Widelines are going to be perfect for putting prescription lenses in. They fit my face very well. The flexible armpieces are wonderful and easy to adjust so that they don't squeeze my head. I am anxious to find a dealer than can put prescription lenses in them. It will be nice to not have to wear two pair of glasses.

The UV blocking lens pieces on the sides of the frames are wonderful for anyone who is photosensitive. I really struggle outdoors if I don't have them on because the sun hits my eyes and it hurts.

I am very grateful to the people at Live Eyewear for going out of their way to make sure my eyes had the appropriate protection in the right size. I would recommend them highly to anyone looking for sunglasses to go over their prescription lenses in order to obtain the best product.

day 878

I'm dizzy today. Not really bad, but enough to know I'm dizzy and to have to focus to do things like bending over and walking and going downstairs.

It's very disconcerting.

And frustrating.

I'm not sure what's causing it. I do know I don't like it.

I'm also having a strange case of numbness along the outer part of my right hand. It's like it's asleep or something, but not. Actually, that hand has been bugging me for a while now. I think I sprained it a couple months ago but it never really wanted to heal. I wore a compression thing to help immobilize and protect it some but it is still very sensitive and I have to be careful what I pick up with it.

Sometimes this whole sickness thing is a real pain in the pants. I know God sees it all and knows it all and walks with me through it, but I am still over the whole thing.

I'm filling out Medicare paperwork. Great. Medicare at the age of 48. How thrilling.

Now that the patent on Zyrtec has expired my insurance no longer pays for it. Instead of getting it for under $7 with our prescription coverage, I now pay $18 for 45 tabs of the generic stuff. If I was poor, I guess I'd just have to decide if I wanted to breathe or eat.

I'm cranky.

the great sunglasses search

I've been looking for sunglasses that go over my prescription glasses for a couple years now. The reason I started it all was for the idea that they'd go over my regular glasses, cut out a ton of UV light, and even take care of the stuff that comes in through the sides when it's really bright outside.

The first pair I got were Fitovers. Actually, I got 2 pair; one for hubby and one for me. They did great at filtering out the UV light but were heavy and didn't want to fit my head correctly. After about an hour I started feeling the weight of them resting on my regular frames and the pressure the stiff arms put on the sides of my head. It got to where I only wore them when I had to.

After I broke one armpiece, I ordered another pair in a different style. Same problem...dark enough, but too heavy and inflexible.

Loss: $150, plus or minus

I went in to WalMart one day and they had their brand of overRX sunglasses, so I purchased a pair. Although definitely more girly in style, and a bit more attractive in color, they also gave the impression after about an hour that my temples were in a vise. The little ledge that is on the top of most of these frames, intended to help block the light, rests on my frames. The pressure from that weight also causes noticeable discomfort, both in the Fitovers and the WalMart brand.

Loss: $30

Recently the owner of an online company emailed me and asked me if I would like to try a pair each of the Vistana and Cocoon brands of overRX sunglasses. I wasn't sure it was really them - I guess all the spam in my email inbox has made me a bit cynical of free offers. After discussing it back and forth, I came to see that they were indeed intent on letting me try their product for free, and I agreed to do so.

The Vistanas are lighter than either of the two previous brands I had tried. Much lighter. I love the wraparound effect. Again, they are excellent at blocking UV light, which is critical for me because of my photosensitivity. The FlexFit armpieces are great. However, are attached to an inflexible section that joins them to the frame, and that is where problem #1 comes in. Again, I get the squeezing sensation in the temple area, and I cannot leave them on for more than an hour without it becoming intolerable. It's no better or worse than the others; it's just there, putting pressure on a very sensitive area, and that makes it difficult to wear them for very long. Problem #2 is the same as it is with the others I'd tried so far. The weight of the frames rests on my glasses because of the light-blocking insert at the top of the sunglasses, and this puts pressure on my nose and then on the armpieces of my glasses. Not as much as the other two brands I'd tried, but it is there nonetheless.

I moved on to the Cocoons next. They are by far the lightest of all the brands I've tried. They seem to weigh next to nothing. They also have the FlexFit armpieces attached to a piece that hooks to the frame front. I put them on and went for a ride. The first thing I noticed was that they don't want to sit over my own arm pieces, but above them. This puts the frame front at an angle, with the pressure on the top of my frames again, pushing into my nose and then into my armpieces. While the flexible armpieces are great, they don't flex where I need them to, so, sadly enough, I get the same squeezing sensation that I have had with the 3 brands, 4 sizes and 5 styles previously tried out.

For someone with nerve problems to the face, it seems that finding sunglasses with extended UV-blocking capability to go over prescription glasses is a losing battle. Each company seems to have a great idea. Each style I tried had some positive attributes. The lighter they are, the better they are. What is needed more than anything, though, for the people who face what I face on a daily basis, is a pair of overRX sunglasses that doesn't put weight on the main prescription lens frame; they also need to have a fully flexible armpiece so that they don't add pressure to an already-painful area. I don't have any answers or suggestions as to how that can be achieved. I wish I could get these kinds of sunglasses with prescription lenses in them. That would solve the whole issue. However, I haven't found a place that sells them yet.

I am grateful to the company that sent me the free sunglasses. I really appreciate their trust in me and their willingness to try and help me out. Maybe my suggestions will help in the development of a style that will help those of us with facial pain issues to be able to enjoy a nice drive or sunny day without adding to our pain from the UV light or the pressure of a second let of lenses and the frames to go with them.

day 859

The Methadone is still working well at this level.

I can drive again.

I'm able to sew as well.

Now if my sleeping schedule would just work itself out....

I see the pain doc again Wednesday and maybe she'll agree to raising that dose up to 25 mg a day instead of 22.5. It's not a huge increase but it might really help.

I'd like to go see my Florida grandbabies. That would be awesome. A little more pain control and I may just be able to do that.

Today I'm 48. It sure doesn't feel like it.

day 840

The increased dose of the Methadone seems to be doing the trick. I've cut way, way back on the acetaminophen consumption and am not in anywhere near the pain I was in a week ago. I know part of it was anxiety but part of it, I'm sure, is due to the medication being closer to a reasonable dose.

Instead of being at a 6-7 sitting, I'm down to a level 5 most of the time unless I overdo and don't take care of myself. If I know I'm going to be busy I take the acetaminophen to kinda help counteract it so at least it helps a bit.

It looks like I might be heading in the right direction.

finally

Abby went with me on Tuesday to meet the new pain doctor.

We hit it off almost immediately. She's a wonderful person, full of energy and life and very caring and kind.

We ended up increasing the Methadone from 5 mg 4 times a day to 7.5 mg 3 times a day and if that works, we may increase it to 12.5 mg twice a day when I see her in a month.

I am so glad she's nice. Dr. P and I just didn't hit it off at all. He may be a nice enough person, but he's just not the doc for me. I didn't like him and I'm pretty sure he wasn't very fond of me, either.

The increased dose of Methadone is already making a difference. I'm sleeping better, not quite so photosensitive unless I get tired, and I don't seem to need the acetaminophen any more unless the day is going weird like yesterday.

She also has an office about 1/2 hour from here so instead of driving to the city to see her, I can go to her other office and we can do what needs to be done there. That also makes me very happy because while I'm quite competent at city driving, I detest it. Her other office is in a little town and it's right at the edge of town across the street from the hospital Norbert had his appendix out at and I won't have to go to Mapquest to get the directions.

Things are looking up.