gwynhefar: (Got tea?)
Chronic insomnia is one of those things that very few people truly understand. I mean, we've all had sleepless nights, right? You get up the next morning and drink an extra cup of coffee and you soldier through. That's because most people's experience of insomnia is intermittent at worse, and more often occasional.

Chronic insomnia is a whole nother kettle of fish. So to aid in insomnia awareness everywhere (and also because I feel like bitching), let me walk you through one of my typical weekdays.

7:30am - Alarm goes off. Hell no. *snooze*
7:39am - Alarm goes off again. I bang it into submission.
7:48am - Alarm goes off for the third time and I reluctantly maneuver out of bed.
8:25am - You know, this isn't so bad. I'm in the car, I've got my tunes, I've got my Coke (or Dr. Pepper). Maybe this day will be ok after all.
8:54am - Made it!
9:25am - Email read and responded to. Make up my to-do list.
10:10am - Look at me go! Productivity!
10:54am - Ok, maybe I spoke a little too soon.
11:45am - Sugar. I need sugar.
12:15pm - Ok, the sugar helped. Back to work.
1:30pm - Yay! Getting things done.
2:00pm - Oh, that's not good.
2:40pm - Ugh. What was I working on again?
3:27pm - Whah? What's that? Oh. Work. Yes. Let me just wipe away the drool.
4:10pm - Is this day over yet?
4:45pm - Almost over.
5:00pm - Only half an hour more.
5:15pm - Only 15 minutes more.
5:24pm - Only . . . fuck it. I'm out of here.
5:55pm - Home! Finally.

(Now at this point, my day can go in one of three ways. Here they are in order of frequency.)

TimeOption 1Option 2Option 3
6:10pmMust not go to sleep.Hell with it, I'm taking a nap.Must not go to sleep
8:30pmGaming!Yeah, ok, I'm awakeHmm, I should go to bed *early*
10:30pmShould start getting ready for bed nowFacebook!Wait, why am I awake?
11:15pmLying in bed staring at the ceilingLying in bed staring at the ceilingLying in bed staring at the ceiling

(From this point on, they are once again the same)

12:00am - ~twiddles thumbs~
12:15am - maybe a glass of milk will help
12:45am - Boring classic literature is the cure!
1:15am - Lying in bed staring at the ceiling
2:00am - Oh, come on now!
2:30am - This is getting ridiculous
2:37am - Sleep, damn you, sleep!
3:00am-4:00am - Finally drift off
4:00am-7:30am - ~snore~
7:30am - Oh crap, not again.

In conclusion, I hope this has been informative for you. Now I'm going to go get some sugar.
gwynhefar: (sciatica)
I'm getting really sick of the health stuff recently. I just spent the last 3 days with a stiff back and neck such that I could barely turn my head for the pain and I couldn't sleep comfortably at all. I hate begging my doctor for medication, but I think I'm going to call him and see if I can get a muscle relaxer. It's a little better this morning, but not much. This doesn't count the migraine I had all the past weekend (although they're probably related) or the nerve pain down my right leg that kept popping up yesterday.

I *know* this is all stress. I mean, yes, I have all these various conditions, but they're usually manageable, until stress makes them all flare up at the same time. But considering I'm in the middle of job hunting with no real way of knowing where I'll be living in 3 months much less in a year, I don't really know how to 'fix' the stress problem. Which means I'm dealing with all these other related problems that are making my life miserable at exactly the time I can least afford to be held back by medical problems.
gwynhefar: (Default)
So I took yesterday off and went to the doctor. He agreed that my migraines and my increased difficulty sleeping and coccoonishness are related to my increased stress what with the job search and having to move and all that. We're going to try upping my dosage of Wellbutrin, and seeing if that works before we talk about changing medications entirely. Also, he gave me samples of two different types of migraine medication and told me to tell him which worked better next time I have a migraine and he'll call me in a subscription for that one.

So here's hoping things will get better, eventually.
gwynhefar: (Default)
So my body has decided that since I have clearly told it it can rest now, it will take full advantage of the situation. In other words, I like NAPS!
gwynhefar: (did you know you could fly?)
So last Thursday I woke up feeling totally run down and exhausted despite getting a decent amount of sleep. I'd been feeling burned out for awhile, as October had been a very busy month for me and I had taken a lot of extra weekend shifts for people. So I decided to take a sick day. Apparently, this made my body go "Ooh! You mean I can *rest* now?!" and after spending most of Thursday resting I did not feel better on Friday. In fact, I got about 3 hours sleep Thursday night and woke up Friday with a migraine. So I called in sick again on Friday. Earlier in the week I'd gotten someone to cover my Sunday night shift, which meant I basically had a four day break.

Oh. my. gods. I should have done that *ages* ago. I don't remember the last time I felt as good as I do today. I showed up to work ready to buckle down and accomplish things, and I've already checked a number of things off my to-do list and I still have half the work day left. It's *brilliant*. I don't feel like I'm spending half my energy just keeping myself awake and upright.

Apparently I really *really* needed the break. Stress can creep up on you so slowly you don't realise how bad it's gotten until it gets better!
gwynhefar: (Book Porn)
Marcus Aurelius is inconsistent. At one point he says "nothing is evil which is according to nature" and barely 2 pages later he says of the body and soul "the one is intelligence and deity; the other is earth and corruption." As if the human "vessel" is not "according to nature." I feel cheated. I thought these ancient classic philosophers were supposed to be impressive.

And yes, this is what I do when I'm sick and awake at an ungodly hour of the morning.
gwynhefar: (Bones)
State of the Gwyn: So after what pretty much everyone seems to agree was a migraine Tuesday morning, I stayed in the nice dark warm bed for an extra couple of hours and went in to work around noon, when the headache seemed to have died down. Unfortunately, as soon as I got to work with the bright florescent lights it started up again, and I was miserable and mostly non-productive for the rest of the day. Yesterday morning when I woke up I could feel the same thing coming on, so I gave up and called in sick, then stayed in bed until about 3pm (no I wasn't sleeping the whole time - I was wallowing). Still felt kinda blah last night, but not too bad.

This morning, after not sleeping very well last night, I woke up in a panic, absolutely certain I'd overslept. A glance at my alarm clock revealed that the power had gone off during the night. So I got up and grabbed my phone, only to discover it was actually 45 minutes *before* my alarm would have gone off. However, considering I still had no power when I left for work, I clearly *would* have been late if I hadn't miraculously woken up early.

Actually felt good most of the morning - took advantage of having gotten up early by picking up some soda and munchies at the grocery store so I wouldn't be as tempted to use the vending machine at work. I also stopped by the farmer's market on the way in and got some pears for breakfast.

In short, I was actually feeling quite good when I got into work, right on time, and was looking forward to a nice, productive work day.

Except that now the lights are starting to bother me again.

Dammit dammit dammit. Guess I'm going back to the doctor.


Jul. 27th, 2010 02:17 pm
gwynhefar: (Pain)
So I get these headaches, maybe once or twice a month, usually. They're not migraines in the 'oh my god if I move my head I'm going to vomit' sense that a lot of my friends with true migraines have described, but they're worse than regular headaches. Pounding ache in what feels like my whole head and sensitivity to light and any kind of loud or unexpected sound. Ibuprofen does just about nothing to help. Excedrin helps some, but not enough. I *can* function when I have them, but it's hard, especially when I'm at work with the bright florescent lights and the computer screen.

I woke up with one this morning and ended up taking a half day off work - just looking at the computer screen long enough to email my boss and say I would be in late made me wince. An extra couple of hours in bed with the covers over my head and I felt better enough to come in for the second half of the day, although the headache is still a dull roar in the back of my brain and I really wish I had sunglasses I could wear because the lights are beginning to get to me.

Anyone else have headaches like this? And what do you do for them? Any suggestions?
gwynhefar: (Default)
Last Thursday I submitted two prescriptions for refill. First stage in this debacle is that Walgreens never called or emailed me to let me know that my refill requests had been denied, so I assumed everything was fine. It took me until Monday to get over there to pick them up, at which point I was told I needed to call the doctor because he'd denied my request.

Fine, so I called the doctor yesterday because it was after they closed by the time I made it to Walgreens on Monday. I asked what was up. I was told that I needed to come in because it had been more than six months since my last visit. I could have sworn it was less than that, but I figured she had the records so she knew what she was talking about. I told her I was going out of town on Thursday and could I possibly get my refills just for this month and make an appointment for when I came back. She went and checked with the doctor, and said no, he wouldn't refill them until I came in.

I was ticked, but what could I do? So I made an appointment for this afternoon. But there was still this nagging feeling that it hadn't been more than 6 months. So I went back and checked. Sure nuff, I'd seen him on March 26.

So this morning I call them back - look! It hasn't even been three months yet. He should have no problem filling my scripts. Which is great, because I have way too much to do before I leave and couldn't really afford the time off work anyway. And besides, my health spending account doesn't roll over until July 1st, so if I went in today I'd have to pay for the visit out of pocket.

She just reiterated, "he wants to see you." Ok, what's going on here? It's the Xanax, she said. With that you have to be seen every three months. Ok, that's not what I was told yesterday. Couldn't you waive it just for two weeks, I ask? I'll be happy to come in first thing on July 12th when I get back. She goes to check with him. Nope. He won't refill the prescriptions until he sees you. WTF? So what you're telling me, I ask her, is that you're making me come in, take half a day off work I can ill afford, the day before I leave on a business trip, *pay* for my visit out of pocket, before I'm allowed to have my *necessary* medication, and you can't let it wait 2 weeks?

Ok, you can tell when I put it like that you can tell even she realises it sounds ridiculous. Look, she says, give me your number and I'll talk to him and get back to you. Well she hasn't gotten back yet, but I'm not holding my breath.

For the record, I have *not* been abusing my medication in any way. I don't try and fill the prescription early, or try to get more than I'm allowed, or anything. I've been on this stuff for months. Besides I could swear I've gone more than 3 months without seeing him while on this medication before. So I don't know what's going on. Something clearly has him worried, but damned if I know what.

And now I have to go get back to work. You know, all that stuff I have to do to get ready for tomorrow that I obviously won't be doing this afternoon while I jump through hoops for the medical profession.

EDIT: After three calls to the doctor's office they finally agreed to refill my prescriptions and let me come in after my trip. Which is good, because I'll probably be staying late at work today just to get some last minute things done that I'd never have been able to do if I had to go into the doctor's.
gwynhefar: (Thumbs up)
So, the 5 lbs I put on during the week after my wisdom teeth where I was doing next to nothing and subsisting on a diet of pudding, popsicles, and applesauce? Apparently I've managed to lose them almost as quickly as I gained them. Yay!! Now I'm just as fat as I was before the extraction, and no fatter. I can live with that.
gwynhefar: (Pain)
So my right wisdom tooth hole is definitely a dry socket. Extreme pain that is only barely masked by the good pills. And also apparently it only takes a few hours of pain for me to turn into a scowling monster ready to bit folks' heads off.

The dentist tried to ask if I could come in *now*. As in drop everything and come in immediately. Which I couldn't do because I'm on desk right now. I told them I could come by any time after 4pm. The process of packing a dry socket takes about five minutes. However, they apparently are unable to squeeze someone in pain in for five minutes any time until 2pm tomorrow afternoon. Which ticks me off. Their suggestion? Take Advil.

So being predisposed to be ticked off, I went looking for various home remedies and ways of coping for tonight, and found so many ignorant attitudes about healthcare and disability it was enough to make me see red, metaphorically speaking.

On a forum discussing whether expired pain killers are safe there was one self-righteous ass who told the poster that if her back really hurts, what she should do, rather than take 2 year old painkillers, is take a few days off and rest and alternate heat and ice. First off - the original poster didn't mention what *kind* of back pain she had, some of which doesn't respond to heat and ice. And also - typical healthy person entitlement - it's real easy for a healthy person to say 'take a few days off' but if this person has chronic back trouble, she probably *can't* afford to take a few days off. If she's desperate enough for pain relief to be looking at 2 year old medication, she probably has been in pain for at least two years and just 'taking it easy' isn't a current option. What ticks me off is healthy people trying to act like they know what's good for unhealthy people, as if they have any idea of what is even possible, much less advisable.

Yes, I'm over-reacting. It's my prerogative. I hate being cranky and in pain.


Dec. 18th, 2009 11:59 am
gwynhefar: (Default)
Well, I've bit the bullet and requested a schedule change. Right now my work hours are 7:30am-4pm. I really liked the getting out early. But with the insomnia and the medication shuffle, getting up early enough to be at work by 7:30 has been increasingly difficult, and I've often had to use up leave coming in late, when I am simply too exhausted in the morning to be safe driving in. So, in the interest of not crashing my car, and possibly getting a little more sleep, I've requested to change my schedule to 9am to 5:30pm, which is the latest schedule I'm allowed. It'll mean a slightly longer commute, since I'll be driving during rush hour, and I won't have as long of an evening - but since half of my evenings are either spent napping or trying to distract myself from the desire to nap, I suppose it's not much of a loss. And I'll be able to sleep in for another hour and change every morning, which can sometimes make all the difference.

In other news, I have created CD inserts (front and back) for my Sad Songs Mixes #1-11 (yes, I do have that many). I'm not offering the actual mixes (I do have some limits when it comes to file sharing, not to mention the logistics of getting that many music files out to folks), but if you want the CD insert files (and thus the track listings), let me know. How you get the actual music is up to you, although I'll be happy to point you in the right direction for some of the more obscure stuff. Personally, I'm quite happy on how the images turned out.
gwynhefar: (Default)
This week has been hell sleep-wise. I got 4 hours of sleep Tuesday night, 6 hours Wednesday night, and about 5 last night. To give you an idea of just how tired I am --

When I was 9 I had spinal surgery to remove the extra half of a vertebra I was born with. Without that surgery I would not be able to walk today. However, it was a very risky and complex procedure, and during the process I suffered some minor nerve damage in my right leg. There's a patch of skin on my thigh that is permanently numb, and my right leg is generally (when I'm not dealing with sciatic tumours) weaker than my left. It doesn't show up much, except in the fact that my right foot turns in slightly and I can't control it so I wear out shoes like nobody's business. And when I get really tired - like having walked a couple of miles - my right leg starts dragging.

This morning, I noticed I was dragging my right leg. It takes a lot for that weakness to show up. But the exhaustion of this week has apparently been sufficient. I am sooo glad today is Friday. I plan to go to bed early tonight and sleep late tomorrow.
gwynhefar: (Default)
Today seems to be a day of whinging, I guess. That happens when I'm stuck on the desk on a weekend and have too much time to think.

After a little over a year of being truly healthy again, I'd forgotten what it was like to be disabled. For the past four months or so, despite multiple attempts at medication to control it, I've been having increasing anxiety, panic attacks, bouts of and crippling insomnia. I'm exhausted *all the time* now. The degree varies from 'stumbling around like I'm drunk' tired to 'I could really use a nap' tired but I'm never not tired anymore. I'm back to counting spoons. I'm back to having to make all my plans conditional -- yeah, I'll hang out with you tomorrow *if* I get more than 5 hours of sleep tonight and *if* I don't have an anxiety attack and *if* the thought of actually facing people doesn't make me want to curl up under the covers and *if* my brain is actually functioning at something resembling normal capacity.

It's a different kind of disability from the physical issues I had before my surgery, but it's become a disability nonetheless. Between the recurring nature of my Depression/Anxiety Disorders and the high likelihood that my Neurofibromatosis will continue to cause problems in the future, I find myself wondering whether I will ever get to be truly healthy again.
gwynhefar: (sciatica)
I have an invisible illness. Well, actually I have several, but there is one in particular I want to talk about, one that newer readers might not even know about, because I have been in something close to "remission" since the surgery I had March 2008. This does *not* mean I'm cured for life. In fact, it's already starting to be a problem again. So, here's 30 things about my invisible illness you might not know:

1. The illness I live with is: Neurofibromatosis. In plain language, this means I have a tendency to grow (non-cancerous) tumors on my nerves. Depending on where the tumors grow, they may or may not cause physical problems. According to my doctor, I probably have several at the moment. The one that caused the most trouble was growing on my left sciatic nerve - the one that runs from the spine all the way down the leg. As it grew, it caused increasing amounts of pain and muscle spasms in my lower back and left leg. The first twinges of pain occurred in 1998 and it finally became so impossible to live with that I had it removed in 2008. The pain was sufficient to cause major life disruptions by 2003, and by 2006 I had to walk with a cane, because my left leg was too damaged to take my weight, and would often collapse under me. Removing the tumor fixed *that* problem. But the main thing about my illness is that I am always growing more. I've been having pain in my right leg recently, and I believe there's another tumor growing on the right sciatic nerve. It's not to 2006 levels yet, but it's heading there.

2. I was diagnosed with it in the year: 2006

3. But I had symptoms since: 1998

4. The biggest adjustment I’ve had to make is: Learning my limits, which may change from day to day.

5. Most people assume: the fact that I've been better since the surgery means I'm cured. I'm not.

6. The hardest part about mornings are: Getting out of bed. Especially if there was pain the night before.

7. My favorite medical TV show is: House. Not because of my illness (which they actually got wrong when they mentioned it, which ticked me off) but because I love the sarcasm.

8. A gadget I couldn’t live without is: Until the surgery, it was my cane. Now - nothing really. At least not until next time.

9. The hardest part about nights are: The pain that wakes you up and makes you sob and curl up into a ball and wish you could just cut your own damn leg off because at least then it would stop *hurting*.

10. Each day I take __ pills & vitamins. (No comments, please) When you combine all my invisible illnesses (which include depression, insomnia, and general anxiety disorder) I take 2 pills daily, plus extra when I have an anxiety attack or when the pain flares. Before my surgery I was on 5 pills daily - including the strongest opiates you could get without an IV

11. Regarding alternative treatments I: have tried massage (helps for awhile) and reiki (also helps for awhile). Neither helps for longer than a day or two, max.

12. If I had to choose between an invisible illness or visible I would choose: Depends on the illness. There are plenty of times I wish people could understand that just because I look fine, doesn't mean I *am*. In particular, I wish my employers could realize that if I'm sometimes a little late to work, or don't get as much done as they think I should, it's not because I'm lazy.

13. Regarding working and career: The intermittent nature of my illness means that I can usually work full time, but I miss a lot of work when there are flare ups. I have been lucky in that academia is usually pretty accommodating. I've had to have graduate assistants do some of the shifting and carrying books that I would normally do. And for the year before my surgery I was allowed to work from home part of the week - I don't think I could have made it otherwise.

14. People would be surprised to know: Tumors can cause major problems even when they *aren't* cancer.

15. The hardest thing to accept about my new reality has been: Accepting that this is my life, and that it will keep happening, again and again and again, forever.

16. Something I never thought I could do with my illness that I did was: Finish grad school.

17. The commercials about my illness: The Children's Tumor Foundation (which advocates for children with NF) has a billboard with a quote along the lines of "What will you do when you find out your child has Neurofibromatosis."

18. Something I really miss doing since I was diagnosed is: Not having to add the "if I feel well that day" to every plan I make.

19. It was really hard to have to give up: thinking of myself as healthy.

20. A new hobby I have taken up since my diagnosis is: I haven't really taken up anything new. Luckily I always preferred low key activities like reading and playing video games to the more active stuff anyway.

21. If I could have one day of feeling normal again I would: Well, the fact that my symptoms come and go means that I do have days of feeling normal, which means the rest of the time is even harder.

22. My illness has taught me: I'm one tough bitch.

23. Want to know a secret? One thing people say that gets under my skin is: "I can imagine!" No, you can't. Really.

24. But I love it when people: Accept the fact that my symptoms are unpredictable, and don't assume that because I felt ok today, I'll be fine tomorrow.

25. My favorite motto, scripture, quote that gets me through tough times is: Since my symptoms are usually worse at night: "Cast me gently into morning, for the night has been unkind." - Sarah McLachlan.

26. When someone is diagnosed I’d like to tell them: Don't overdo it on the days you feel good. It'll make the days to follow that much worse. Learn your limits.

27. Something that has surprised me about living with an illness is: You can bear a lot when there's no other choice.

28. The nicest thing someone did for me when I wasn’t feeling well was: Brought me food when I was complaining on the phone that I was hungry but didn't feel up to going out to get something.

29. I’m involved with Invisible Illness Week because: Too few people understand that illnesses don't have to be obvious to rule your life.

30. The fact that you read this list makes me feel: Thankful that you cared enough to get this far, and hopeful that you've learned something :)


Aug. 24th, 2009 11:35 am
gwynhefar: (Default)
I've really sucked at updating LJ lately, except for book reviews and such. So here's a little of what's been going on with me lately:

1) Depression/insomnia stuff - I've been on the new medication for about a month now. No bad side effects. As of the week before I left for vacation I was still having serious insomnia issues, but most of the depression seemed to have backed off some. I also have sleeping pills now to help with the insomnia, and hopefully between the anxiety/depression meds and the sleeping pills I can get my sleep schedule back on track, which I think will help enormously with my mood.

2) Vacation - I just got back on Saturday from a week in Punta Cana, Dominican Republic. This is the parent-funded "we don't see you and your brother enough so we're going to fix that by taking you on an awesome vacation" trip. With the exception of the day I forgot to wear sunblock and got sunburned, it was all heaven. We stayed at an all inclusive resort, which means you pay one price to stay there, and everything on the resort (food, activities, alcohol, etc.) is free. Right outside our room was a huge pool with a swim-up bar, and the beach was just on the other side of the building. The scenery was spectacular, although we really spent more time at the pool than we did the beach.

3) Work - My first semester class starts tomorrow. I think I'm pretty much ready, but I'm nervous. I've done one shots and guest lectures before, but this'll be my first time teaching an actual course. Hopefully I won't do too badly. I'm still working on a recalcitrant paper on Virtual Worlds with some colleagues, but it's mostly been put on the back burner while I prepare for class. I'll have to get back to it later this week.

That's mostly it, although since I've been so bad about updating, if you've been wondering about something or just want to say hi, feel free to comment :)
gwynhefar: (eddie izzard pirate)
You know I've been sick too long when even the guy at the Rite Aid mentions it. Of course, he was using it as an opening to flirt with me, but still :) Damn recurring cold.
gwynhefar: (Default)
Well, front page news this morning is that there are 7 confirmed cases of H1N1/swine flu in Louisiana with 16 more suspected, with 5 of the confirmed cases being the school children in Lafayette that people were talking about last week. They've been closing a bunch of schools, both the ones the infected students go to and in some cases, other schools that have siblings of the infected students. So far all the confirmed cases are responding well to treatment. So I guess we'll see.

Oh great.

Apr. 30th, 2009 08:52 am
gwynhefar: (Default)
A private school in Lafayette, Louisiana, 60 miles west of me, has closed down temporarily after 5 students, including one who recently returned from a vacation in Mexico, came down with severe flu symptoms. They're keeping the school closed until tests can be run to determine if it's regular flu or swine flu. Of course, it's *probably* just regular flu, but you never know. And of course the local media is whipping folks into a panic.


gwynhefar: (Default)

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