can't think of a title

I'm in semi-darkness today. My eyes are bothering me.

I just took a Vicodin again. I only took one yesterday. It was really constipating me and I needed a *break* day so I could let the stool softeners do their thing. I couldn't hold off any longer, though. The pulsating feeling is winding up again.

I'm supposed to have company today. I'm seriously considering putting a note on the door telling them it's a bad head day and to come back another time. I'm wondering with part of my brain if they'd be offended and with another part of it I don't really care. I just want peace, and quiet, and no crying or fussing or demanding kids, and no pressure to be sociable.

The sink is filling up with dishes. I can't decide what to make for dinner. I'm not functioning well today.

I did manage to fold a load of clothes, put a load in the dryer, and put one in the washer. At least I can keep up with the laundry. Forget running the vacuum. My head just might explode at that one. Maybe I'll get to the dishes later, too.

For now I'm heading back to the couch to continue my backwards evolution into a potato.

adjustments

It's hard when you get to the point where you have to start giving up your independence in slightly bigger chunks. It's tough giving one of your grown kids a shopping list and the debit card so they can go buy groceries for you. I don't like what this is doing to me, but I know that if I want to have the energy later today to watch 3 active little boys that I can't go shopping, too.

The pain is still at a 3-4. I did take half an extra strength Vicodin this morning. I'm hoping I won't have to take another one but we'll have to play that by ear.

I need to call the neurologist and see if they can give me something for the chronic pain now that it's past where I can tolerate it for days at a time without taking breakthrough meds. I don't want to be eating Vicodin like candy. It's just not very appealing to me.

At least I have the blinds open today...for now...

written on Tuesday

The attack I had yesterday seems to have intensified the symptoms I
had already been experiencing. I just took my 3rd dose of Vicodin
today, and I've taken Xanax and DHE, too. The back of my head where
the occipital neuralgia hits has been tearing me up today. The pain
level has gone from a relatively tolerable 2 to about a 3-4 even
after meds. I'm hoping I can get into the neuro clinic at Barnes
soon - I need some pain management if this is going to be my new
normal.

I'm also going to have to start limiting my driving more. If I
drive, it wears me out. My photosensitivity is worse and the
ringing in my ears is louder.

yesterday

I ended up in the ER again. It was half an hour after Miss A's shift started and I was watching the boys and man, it came on like a ton of bricks upside my head. I text messaged her, and got hold of hubby, and she got a ride home from the guy next door who is also her landlord, and hubby met us at her work place (midpoint) and he took me to the ER and she took the van and the boys home since we couldn't drive 2 cars.

I felt like I was going to hurl. I was dizzy and nauseated and my head screamed at the sight of any light at all. The poor boys...I put a movie in for them and tried to keep an eye on them till Miss A got home; they were so good! They sat on the couch and Kenny sat on the floor and they watched their kid song video till Mom got home and she took us up to Flying J, me with a towel wrapped around my head to keep the light out. She and hubby moved the kids over to the van and she took them home. We headed for the highway.

There's an ER at a hospital up the highway from us that was bought out by another hospital system. They've switched to almost exclusively psych but since psych patients try all kinds of interesting stuff, and because, if they closed, there would be no ER for almost 50 miles for some people, they kept the ER open. Thank goodness!

They put me in a dark room and shut the door. 3 minutes later they moved me to a "curtain" and I promptly but kindly informed them if they didn't put me back in the dark, quiet room I was going to puke. They got my vitals and put me back in the little room. I had to leave the door open - claustrophobic, you know.

My blood pressure was !!158/110!! and my pulse was 124. This is NOT normal for me and a good indicator of the pain I was in.

I handed them my list of allergies, meds, and what doesn't work for me. They were glad to see it and I was glad not to have to tell them all of it. I told the nurse when he asked me what worked that the last time they had given me a shot of Dilaudid in my butt. The doc came in and messed with me a bit, and then I got my shot. OUCH. That stuff stings!

They kept me about 15 minutes till it kicked in, and then put me in a wheelchair and took me to the door where hubby had the car waiting. By this time I was more like a lush than I ever am unless I get this drug. I can't walk straight, I get dizzy, and lightheaded, and nauseated, and DARN IT ALL I FORGOT TO TELL THEM TO ADD PHENERGAN...

We stopped on the way home for a drink. Hospitals dry me right out, and my rapid pain-induced breathing (I'm a mouth breather) didn't help, either. At least my claustrophobic head wasn't fighting with me - the pain had lessened so that I didn't have to decide if I wanted the towel wrapped all the way around my head so no light would get in or if I wanted to breathe.

Got home, and by the time I got in here to the couch I was fighting not to puke. Yum. What a marvelous feeling that is! I have some oral Compazine here so I had hubby bring me one, and then I had him bring me a bagel to gnaw on since I hadn't eaten in hours and knew from the feeling in my tummy that I needed to get something into my system. I fell asleep 3 times while I was eating it. Chew chew...doze...chew chew...The nausea finally left after about an hour, thank goodness.

I dozed on and off till after the 10:00 news and then we went to bed. Let me tell you, those sheets felt great!

Hubby and my oldest daughter were invaluable. They helped me in spite of their own concerns about my condition and their calmness (or apparent calmness, I know they freak out when this happens) helped me to remember to breathe and not scream.

I love my family.

hopping down the bunny trail again

Okay so this morning I made some phone calls like I promised hubby I would.

The pain clinic at Barnes won't see me without a referral and records.

The neurology clinic at Mizzou Hospital won't see me without a referral and records.

The neuro clinic at Barnes called back. I don't need a referral for them but they do pre-screen, so I just printed up records release forms for my current neuro, the old headache doc, and the place I had my scans done at. I'll mail them today or tomorrow and then once they get and review the records they'll give me a call.

Hurry up and wait...the story of my life.

My head is pounding today. I don't know if it's the stress, the muscle tightness in my neck, the sunlight, the humidity, the constant pain, or what. It's not like I have any predisposing issues.

The area just below my right eye has been twitching since I got up this morning. That's an interesting development. I hope it stops.

The ringing in my ears is especially loud today. Lovely.

I have 3 sleeping cats here. I think I'll go join them.

wearing off

I'm recovering from the Doxepin side effects already. I don't feel so dizzy and my coordination is better. I was out a long time yesterday and didn't get all nauseated, which is good.

I did have one heck of a headache last night so I took a whole E.S. Vicodin and 0.5mg Xanax so I could sleep. It worked like a dream. I slept better than I have since I started the Doxepin and woke this morning feeling much more rested.

I guess I need to let the doc know about this drug, too, and type up an updated med list so I have it with me.

Onward and upward...

can't sleep

I have horrid insomnia. I'm wide awake. The back of my stupid head hurts again and it prevents me from relaxing all the way when I'm lying down. The right side of my head is giving me fits even after half an extra-strength Vicodin. I don't want to take any more. I'm afraid I'm going to become dependent on this stuff and it scares the bejeebers out of me.

This is getting ridiculous.

I'm so sick of being this way I could puke.

I want my life back.

side effects

I'm getting some rare side effects from the Doxepin:

numbness and tingling in my hands and fingers, left side more than right
nausea
diarrhea
dizziness
and, glory be, my head hurts worse now

I guess I can cross this one off my list, too.

I hate this guinea pig game.

I need drugs.

Time for a Vicodin, I guess.

griping

I hate this disease, and I hate what the medicine that is supposed to help it does to me.

I had to go to WalMart and get a few things today. By the time I got home my head was giving me fits and I was so dizzy hubby had to help me into the house. I was also nauseated to the point of feeling like I was going to throw up, and I rarely get nauseated. I know it's from the Doxepin but I'm on the lowest dose they can give me so I hope it goes away. I'm reluctant to drive now because my perception is skewed, too.

My sleeping pattern is all off. I slept most of the day away yesterday and then last night I may have slept for 2 hours. I napped some this morning. I feel all upside-down. My life is discombobulated.

I missed the birthday party for Kenny and Jimmy today. I'm glad I didn't go, though, because the distance I would have had to drive from there to here is just too far with how I was feeling. It wouldn't have been safe.

I took a Vicodin and 1/2 a Xanax. I hope they help.

I'd like to go to church but the lights, sound, and smells would do me in, so instead I stay here at home in the semi-darkness and try not to aggravate whatever it is in my brain that's making this stupid headache stuff act up. As long as I'm here, I'm fine; it's when I go out and about that things get out of control. I'd hate to end up housebound. I'm so used to doing what I want when I want to do it - this is really frustrating me to have to schedule my life around doctor's appointments, drugs, and how bright it is outside as well as how noisy it's going to be wherever I want to go.

This isn't part of my plan for my late 40's. I don't like it.

Doxepin day 2

Still no bad side effects except for the tiredness. The dry mouth is barely noticeable. There is a slight dizziness first thing in the morning but it's tolerable.

I need to call those places in Columbia today. Maybe I can get in without too much hassle, but I need to see if they take my insurance first. That is probably more important than anything else right now.

At least I'm sleeping again...

Doxepin day 1

I got the dizzies today, and I've been tired, both common side effects. I think I took 3 naps and they were significant ones, more than an hour for each of them.

I got bold tonight and cut my own hair. I was tired of waiting to have the money to pay for it and I've seen it done enough; I grabbed the scissors, did a whack job, and took a shower. I had hubby trim up the back a bit since it's short and needed some of the neck cleaned up and I can't get back there. It feels a ton better.

We'll see what tomorrow brings...

how deep is the rabbit hole?

I got in to see the neurologist yesterday. He gave me a script for my Vicodin and Xanax, and also for Doxepin. I guess he thinks that will be the magic cure-all pill. We'll see. I don't like the look of the side effects.

I also called the Mizzou hospital and got the numbers for their pain clinic and their neurology clinic. Maybe I can find a doctor there who can help me out a little more, and maybe their pain people will be a bit more understanding and not want me over there 3 days a week. St. Louis is unreasonable.

I start the Doxepin tonight. I do hope I don't get the "stupid" thing going again.

My head is a mess. I've had 3 bad nights and finally last night I took drugs before bed so I could sleep. I've missed making hubby's breakfast for 3 days in a row now and feel horrid about it. I also miss that little bit of morning time with him. I've napped on and off all day in between a few errands I needed to run. I feel like I could sleep for hours.

I wasn't going to post today but this is my way of keeping track of all the ups and downs with my meds so here I am. I need a place where I can go and look back and see where I've been in case I forget things, like when I lost my sunglasses in the car today. Thank goodness one of the grandtwins found them or I'd have been out $30 or so because they're the magnetic ones that go with my prescription glasses.

I need to put some chicken nuggets in the oven so hubby has something to eat. It's almost dinner time.

mid-night ruminations

Here I sit, again, in the middle of the darkness of night, having been urged once again by the pain in my head to take the drugs I vehemently swore I would not come to depend on, waiting for the relief I know will come eventually, and trying not to fear that I have become an addict.

I am not addicted to these pills. I fight taking them for the longest time I can possibly manage. I hate them. I hate what I know they represent.

However, I do depend on them. I need the diminishing of the pain they will bring. I need to be able to sleep, to rest, to stop feeling as if I am a writhing mass of unrelenting uncomfortableness.

It sucks, feeling like this.

I hate who I am becoming. I hate having to get up in the wee hours of the morning to ingest compounds that used to knock me out, knowing they will only help ease the reminder of the ever-present companion my neuralgia has become.

I wonder if I will ever again be pain-free before I close my eyes for the last time.

I wonder if I will ever feel fully alive again.

bad choice - or not

I'm sitting here wishing I had taken the urge to come home and sleep when I got it instead of going to the mall with my daughter and the twins. I don't know why I ignored it.

My head is pounding, or is it pulsating? Anyhow, it hurts like the blazes. It started with the A/C blowing on my right cheek, which I know better than to let happen, and just accelerated as time went along until I got that wonderful stabbing sensation in my right eye socket.

I took Tylenol extra strength, 2 of them, but they're not touching the pain. One way I can tell is that I can't spell worth beans and that only happens when I hurt.

I hate to take the Vicodin again but I may have to.

At least I found some good deals at Penney's. I hadn't been able to find denim shorts in my size for the price I felt was reasonable to pay at WalMart and they had them marked down at Penney's to $9.99, which was $6 less than the cheapest ones at WalMart, so I got a pair. I also got a t-shirt with a gardening thing on the front for $4.99 and an outfit for my youngest grandbaby for $5.99.

It almost offset the outrageous price I had to pay for gas when I stopped to put some in the car.

I either need to get off here and take a Vicodin or take a nap. Maybe I should do both. It certainly wouldn't hurt.

unrest

It's 3 in the morning and my head is pounding. The back of it feels like it wants to explode. The right side is still protesting the earlier attack. I can't see keeping hubby awake since even putting my head on the pillow is difficult, so I got up and took a Vicodin and a Xanax.

While I'm waiting for them to kick in, I made a batch of banana muffins for breakfast. I did some of the dishes including the ones I messed up with my baking, the pot pie pan from last night, and the leftover meatloaf container. I made hubby's lunch for today, fixed up his Gatorade, and opened a can of peaches so he could take some to work with him.

I fight sometimes, especially in times like this, with feeling almost a condemnation from my fundamentalist Charismatic background. I remember well-intentioned but often misguided people saying that prayers aren't answered because people praying them don't have enough faith. I've been beating myself up for that one since I was young, feeling somehow flawed because so many of the answers in my life have been no. Then I remember Job, and how he lost everything he had; and Joseph, who ended up in a hole in the ground and in prison; and Ruth, who lost her husband and her people and wandered the desert with her mother-in-law after her husband died. I remember the disastrous marriage Kathryn Kuhlman had, and how a prominent revivalist of this day and age lost his daughter to cystic fibrosis after his healing and revival services brought relief and renewed hope to probably millions of people. Those kinds of memories help me to regain my perspective and to remember that sometimes, for whatever reason, God says no to our prayers, fervent and heartfelt as they may be.

I have atypical trigeminal neuralgia. I have occipital neuralgia. I have allodynia, and I have chronic migraines. These conditions prevent me from working outside the home in gainful employment, and they interfere in my life in several unpleasant ways, most recently last night and this morning.

I have come to the conclusion in my ever-unwise way of thinking that perhaps learning to live with a chronic condition with grace and not giving up is at least as significant as being miraculously healed. Sometimes living with something is harder, and builds more character, and gives us an insight into things we never would see otherwise; and maybe that is what God intends when He allows "bad things" to happen to "good people." Maybe it never was His intention to remove all our struggles, or to take all our pain away, or to make this an easy, breezy, always-and-forever-victorious kind of life. Maybe learning to deal with what's been handed to us on a daily and sometimes moment-by-moment basis is more important than learning to demand instantaneous release and relief from trials and tribulations.

And then maybe I'm wrong...

But I like to think not.