protein

I'm back to sucking down 4 protein shakes a day. I can feel my body sighing in relief. I got out of the habit of doing it too long ago, and I was paying in a bad way. I've found that more than anything it staves off hunger when I do the protein like I should. I also have more energy. It's not helping the headaches, but it's okay. I didn't expect it to.

Today was a minor pain day. I got some serious sewing done. I made the blocks for a baby quilt top. I might get it put together yet tonight.

I've been sleeping like crap lately. I woke up at 4 two days ago, and again this morning. It sucks being awake so early. It makes the day seem awfully long.

I'm out of Zyrtec. It's $40 for a refill so I'll have to wait till Thursday at least to get one. I've been sneezing and itching all day, but I just can't justify paying that much for a pill when the finances are tight. I'll be okay. I lived with the allergies before the pills, and I can do it again.

I wish I felt good enough to go to church. However, the claustrophobia kicks in and all those people in such a closed-in space does nothing to help my head. The music is too loud and the microphones don't do much for me, either. Then all these people want to talk to you, and many of them don't understand quiet...not that they're bad people; they're just loud.

We'll probably be seeing in the New Year in a horizontal position, sleeping soundly. I haven't been out on New Year's Eve in years and years. It's just not worth it to take chances with my safety with all the crazy drivers out there coming from and going to bars and stuff. We slept it in last year, too. Maybe it's part of becoming an old fart.

In a month and a day I'll be 46. Yippee.

Starting early

This migraine crap has my body in an uproar. I can't exercise because it increases the intensity of the headaches. I'm craving carbs like nobody's business. I've put on weight and I'm mad.

Lat night I talked to hubby and asked him to help me out by encouraging me when he saw me making good choices. This morning I got up and had a protein shake at 4. At 5, after he got up, I made him ham and eggs and I had some fried ham. At 8 I had another protein shake with my vitamins. I just now finished two pieces of string cheese. That's it...I'm back on the Atkins thing until I can get this carb crap under control. I need to get back in my 14's before summer. There's no excuse for this except I'm depressed, frustrated, and mad. That's no reason to undo all the hard work I had to do to get where I was. It's got to stop NOW.

I can't cut out the caffeine, though. My headaches get worse when I do that.

I'm gonna have to stop getting some of this expensive medicine that's OTC. The Migravent is 60 bucks a month. I've been on it almost 3 weeks and I haven't noticed a change. I can't be spending money we don't have on meds that don't work. If it helped that would be different. I do have to keep up my post-op vitamins so I don't go into malnutrition, so those are a priority. I had to order calcium and iron yesterday and that came to 35 dollars. Thank goodness I only have to do that about every 3 or 4 months.

My daughter said if she and her hubby get enough back on their taxes they want to buy the Olds from us. I'd take that money and put it toward the van loan and it would bring us down to like only 3 payments left and the van would be paid off. That would give us an extra $125 a month, plus our insurance would be cheaper. We're switching to The Hartford because with hubby being an AARP member it's taking our insurance down from $126 a month to $673 a YEAR. That's like a major difference in cost.

If we can get through the winter we'll be okay. I'm going to start making some things to sell, if I can sell them. Baby bibs, pillowcases, pincushions...the kinds of things I can sell at a craft fair that will go quickly and don't cost a lot to make. I'm also making some quilts for pay but most people don't want to pay what they're worth so I don't do much of that.

I think I'll make chili for supper. I can have a little dish of that and I'll be okay. I've only had like a handful of carbs today and they were in my protein shake so I don't count those.

Life is such fun...

And the beat goes on...

Turns out it's not a good idea to have a spinal tap for a baseline pressure if you've been taking Diamox. Turns out that docs don't always communicate with each other. Turns out that wasting a quarter tank of that liquid gold I'm putting in my tank lately could become routine if I don't become even more of my own advocate and make sure these people know what the hell they're doing and why before I log miles on my van only to turn around and come home again.

I feel old today. I hurt. My feet are still tingly. I wonder how long it will take for that to go away now that I've stopped the Diamox again to prepare my body for the spinal tap that has to be rescheduled once my new doc is back in the country and able to tell the spinal tap doc what he's looking for and all that jazz.

I feel sometimes like all I do is complain. I feel like all I do is hurt. I do hurt all the time now, but I hope to God I don't complain all the time. It's just so frustrating to not be able to do what I want to do...to be in pain no matter what I do, but to have to watch what I do because doing too much makes the pain worse...I don't remember signing up for this. Did I sign up for this?

This is not a good day. I found all these pics I wanted to upload to WalMart.com and print out, and then the damn site bleeped on me and I lost them all in cyberspace somewhere. I don't have the patience to do that again this morning so in a while I'll just put them on a CD and take that in. It'll be a lot less hassle.

Whine, whine, whine....
It's gonna be one of those days.

Christmas Day

This morning I got up and my fingers looked like little sausages again. I'll be stopping the Tegretol till I can see the doctor. I'm not calling him on Christmas to tell him I'm having another weird side effect. It can wait.

I popped half an extra-strength Vicodin today an hour before the kids got here. It worked relatively well. I made it through an hour and a half before I started feeling like I'd had enough. I got pictures of the two separate families as well as of all the kids and grandbabies here together. I'll get some of those developed and send them to my mom as well as getting the kids copies, too.

The nerve on the upper right of my face...I think it's the trigeminal nerve...has become really agitated since I got those shots. Now it hurts if I open my mouth too far.

I tried the earplug gig again today. No way. The pressure from the earplugs is no fun, the ringing in my ears is louder than it is with them out, and I feel really strange with them in. I won't be doing that again. Also, it's like pulling teeth with tweezers trying to get the darn thing in my left ear. I don't know why but it keeps kinking up.

It feels weird not to have anything I have to sew. I'll start again tomorrow. I have things I can do; just nothing I have to do yet. Next week I start on baby quilts. 4 of them.

Note to self: pumpkin custard is good.

I'd just about commit a crime now for a day without pain. I keep hearing that word...lifelong...and that seems an awfully long time. Way long. Way too long.

Christmas Eve

I'm done with the gifts. It's a good feeling considering how crappy I've been feeling. I guess, in a weird sort of way, I'm getting used to it.

My diagnosis, though frustrating, is certainly better than not knowing anything. I'd rather have a name to put with this mess than to have the mess with no name.

I didn't even make it all the way to WalMart and back today before the headache started in. I drove over half the way home at 35 miles an hour. I used to be such a leadfoot...I used to crank up my music and sing along at the top of my lungs...I used to giggle and scream and all kinds of things I can't do any more without paying nasty consequences.

I can sew, though. I can sew, and when I hurt, I can put it down and pick it back up and continue when I'm feeling better, or at least when I can handle the noise of the machine.

Tomorrow the kids and grandbabies will be here just for a short while so we can exchange presents and have a little snack. We were going to do a meal but there's no way I can handle that at this point in my disease process. I'd end up in the bedroom in the dark with the fan on, and that's rude. The kids understand. They've been really good about it all, though it certainly has put a kink in the way we used to do things. I can't be out and about like I used to. It half kills me. Not to mention the fact that not working put a big fat kink in the bank account...

I guess I'll just make the best of what I have and what I can do instead of grousing about what I can't do, since it won't change anything, anyhow.

Attitude...it's all about attitude...what you do with what you're handed...

no job, no cure

So the doc fills out my paperwork this morning for a nonpaid medical LOA and puts the duration of the "disability" as lifelong. Bang. There goes my job in one fell swoop. I do have a chance to go back if things settle down, though...if, if, if...

Now he thinks I have atypical trigeminal neuralgia and occipital neuralgia. It's not face pain though...it's deeper than that. It's hard to explain. It just hurts deeper than my face, like down into my head.

I'm starting on Tegretol tonight. We'll see how that goes. I'm a challenge for this doc because of my *extreme* sensitivity to drugs and stuff. I had to back off the Diamox dose he wanted me on because it dried me out so badly I felt I was dying of thirst. I stopped the Plavix because I had this massive nosebleed and then when I was just blowing my nose I had flecks of blood coming out.

What a sucky way to spend the holidays.

At least most of the gifts are done.

Gosh, my head hurts...and hurts...and hurts...does it ever stop?

it shouldn't be like this

I hurt.

My head is worse now than it was before the nerve block shots. I've awakened to pain every day since last Friday.

I'm stopping the Plavix. The headache doc said there is no proof it helps prevent a stroke if you haven't had one already. I got the most horrendous nosebleed yesterday. It lasted over an hour. It scared me. It felt like I lost a half pint of blood. It just wouldn't stop.

I also have to talk to this guy about the Diamox. It's drying me out to no end and that's what triggered the nosebleed. I'm not sure I can keep taking it at the dose he wants, either.

I'm supposed to go get another set of shots tomorrow. I'm not sure I'm up to it.

The DHE is about as effective as the Maxalt. It helps, but doesn't stop the pain.

It looks like Christmas is going to suck this year. I haven't got the energy to spend time with a house full of family.

I wish I could figure out what triggered this whole mess. It was like I was going along with occasional migraines, one or two a month, and then BAM! "Hello, my name is pain, and I'm moving in with you now. You'll wish some days you were dead. Others you'll be able to function, but I'll always be there, ready to strike at the least expected or most inopportune moment. Get over it. There's nothing you can do about it."

I need to do stuff. I'd better get it started.

Day 73 and counting

The nerve block didn't do much good.

I wasn't anticipating a miracle but I was hoping for at least some relief. I got some...for about 24 hours. Last night I had to take a Vicodin. The headache doc said to limit my DHE use to not more than twice a week. I'd already taken it once for two days, and then on Friday I took two. That was enough. I still had a mean headache, though, so I had to do something.

Today that tight feeling is back. My neck is sore and I can feel the tenseness coming on just like it used to be. Drat...

I need to make the appointment for the second series of shots on Thursday or Friday of this week, and then on the 27th I get to go for my lumbar puncture.

I'm hoping the disability paperwork goes through and gets approved, or things will be getting pretty darn tight around here come springtime. We can make it on what hubby makes, but we don't have anything extra for car breakdowns or anything that might come up of an unanticipated nature.

I'm making steady progress on my Christmas gifts when I feel up to sewing or cutting. I'm hoping I get them all done on time and shipped out so the ones going out of state arrive within a reasonable time frame. I'm not holding my breath on that, though...I'll have to ship them priority to get them there on time now, I think, and I'm not sure how much that is going to cost, and we have to pay the personal property taxes and get the plates for the van. Those are paramount. If the gifts are late, they're late.

I keep hoping I'll be able to come here and post about how my headaches have fled, but that's not happening. I guess it's all part of the process.

nerve blocks

I got my first set of shots today.

They hurt like hell.

My head is numb but I'm still in pain.

I go for another set next week. If they don't start helping then, the doc won't have me do any more.

I got hot, and flushed, and felt dizzy, and nauseated, and felt like I was suffocating. The fact that I was in a tiny room with no actual circulation certainly didn't help as I am claustrophobic. After the doc opened the door and gave me something to fan myself with I felt a bit better.

I think the goal was to lessen the headaches. If that was the goal, it didn't work. In fact, my head hurts more today than it has for a few days now.

He wants me to up my potassium supplement to maybe help with the tingling from the Diamox. I told him I'm increasing it more slowly than he suggested to give myself time to adjust. He's okay with that.

The Christmas presents I've finished are sitting in the spare room. I don't have the ability to concentrate long enough to pack them up. I called my son and told him they might be late since I have to ship theirs to Florida. It's sad when they've been sitting there for over a week and they're still not even wrapped or in a box. This headache thing is really messing with my life.

I need to have paperwork done for work. I'm most likely going to lose my job. I can only get a 3-month non-paid LOA and I've already been out for 9 weeks, I think, or is it 10? At least I have the option of going back if I get this under control if I play the game right, though.

I need sleep. I can't get enough sleep lately. The dizziness hit last night and I spent over an hour sitting up in bed so I didn't feel like the whole world was spinning. The nausea didn't help, either. Doc says it could be an interaction between the Diamox and some of my 20-odd other meds, but he wants me to keep track of the symptoms and see if they get worse or go away.

Maybe I'll take an Ambien tonight...but what if *that* interacts with the Diamox?

Wednesday

I'm applying for disability. It's amazing how many times I've answered the same questions. No wonder they need so many people there; inefficiency apparently is the rule of thumb.

I woke up again with a familiar pounding in my head. However, I can't just put my life on hold because my head feels like it wants to explode. I have laundry to do, and dishes, and the cats need to have their litter box scooped. We were going to go to the mall today. I'm not sure that's such a good idea. It's too close to Christmas and all that noise might be more than I can handle right now.

I'm not sleeping well. I keep waking up. Restlessness seems to be the theme of the times. I'm not sure if I'm not sleeping because I'm napping so much, or if I'm napping so much because I'm not sleeping.

I don't feel much like going anywhere or doing anything. I don't really have to go anywhere if I don't feel up to it. The post office box will keep the mail dry. The kids can wait till another day to go shopping. I can just sleep and putter around here. I'm just getting so tired of that I could scream.

This brings me to the topic of mood changes. Do the tension and pain combined bring on the grumpiness, or does the grumpiness cause the tension and pain? Chicken-egg...
Or is it a cycle, like most of the rest of things in life?

I don't like who I am very much right now. I'm not pleased to spend most of my days sitting in a half-dark house with the quiet surrounding me...except for that damn ringing in my ears that won't go away. I tried earplugs. They only amplified the ringing. It's downright annoying. It could drive me mad if I weren't so mad at it.

Laundry calls...

tinnitus

I think I could deal with the headaches a little better if it wasn't for the tinnitus. I have an almost constant ringing in my ears that sometimes gets so loud I have a hard time hearing normal things. This started about the same time as the non-stop migraines did. It won't go away, either.

I need to remember to tell the headache doc about that when I go in later this week for my head shots.

I was hurting almost before I woke up this morning.

The Diamox is doing the nasty thing again. I woke up in the middle of the night with an incredibly strong sensation of tingling in my fingers and hands that was so intense it almost hurt. I'm not sure I can stay on this stuff. If it interrupts my sleep like that, and lack of sleep makes my headaches worse, is it really worth it? Another conundrum to deal with...

I've pretty much decided I'm going to put my migraine stuff in here instead of in my regular blog on OD. I feel better having a place just to vent about this without feeling like I'm spending all my time whining. This is a place to work things out with the help of words. It's a place to be who I am without feeling pressured to be anything but what I am.

I need to remember to reschedule my nerve block shots today. I also need to drag my butt out of the house long enough to mail the bills I can't pay online and check the post office box. I'm glad we have it because I don't have to worry about bored redneck teenagers beating up our mailbox any more, but it's a pain in the pants some days to have to go all the way into town to get the mail.

I need to go start tossing back my pills. I take enough of them to support a small pharmacy. If only they worked...

Day 67

I started on my chronic migraine path 67 days ago. I've been struggling with the headaches since I was 17, so it's been almost 30 years that we've been acquainted. I never really wanted them to move into my head for good, but it seems that they have done so, uninvited as it may have been.

I've tried so many meds it makes my head spin. Most of them either don't work or give me side effects from Hades. I get dizzy spells, tingling, rashes, perceptual difficulties, hangovers, the ever-entertaining "stupid factor," nausea, chills...you name it - if it's rare, I get it.

Let's see...we've done Midrin, Relpax, Axert, Frova, Imitrex, Zomig, Lyrica, Periactin, Zonegran, Dilaudid, Demerol, and Maxalt. We've tried shots, sprays, orally disintegrating tablets, and pills.

Currently I'm taking Plavix as a stroke preventative, slowly increasing doses of Diamox (man, does that make me tingly all over!), Migravent, and, in case of bad headaches(according to whom?), a nasty little combination of DHE(dihydroxyergotamine, aka belladonna, aka nightshade), Reglan to keep it from making me sick, and caffeine to give it a jump-start. I also have oral Vicodin as a rescue drug to keep me from making the ER my second home since they like to give me Dilaudid and I end up acting like the world's biggest drug addict when that happens.

I've been off work since October 7th. I can't function as a nurse when I'm impaired (under the influence of narcotics or other funky drugs), and I can't function in pain anyhow. I've applied for disability and am wading through the reams of paperwork that requires.

I've had a CT of my sinuses - clear.

I've had an MRI of my brain and spinal cord - showed something but wasn't clear enough, so we did...

An MRA of the same, which showed a dominant anterior circulation...no aneurysm, though; that can be fixed...it would be too easy...

Now the headache clinic man wants a lumbar puncture, and trigeminal/occipital nerve block shots to my head. That is something I'm really looking forward to.

I've been to the chiropractor. My right neck and back are pretty tight, and, while the treatments help the tightness, they've done nothing for the headaches.

No easy fix...but then again, I've never been one to do things the easy way.

I've also been diagnosed with allodynia. I think it's cutaneous...it mostly involves my scalp. I feel pain where others don't. Another strange one.

I'm hoping this record of my journey will help me keep what's left of my sanity.

Maybe some day I won't need it any more.

Maybe some day I'll fly.

If wishes were horses...