The Thousand Teeth

Ignore this…

awamiba — Mon, 23 Jan 2012 23:11:19 +0000

…it’s mostly a note to myself, but I re-read my last post before I post again and therefore I will read this exactly when I need this next.

Another mini-episode. Today’s symptom order:

1. Notice I’m warming up (warm water running nearby, cute hat wearing in progress)

2. Mild dizziness

3. Massive confusion (where am I? why am I wearing a hat indoors? whose clothes are these?)

4. Sharp spiky headache immediately followed by

5. Memory intactness and

6. Big dizziness

7. later, about 10 minutes or so, nausea. bleh.

Especially note: blood pressure & pulse normal when checked after confusion cleared.

Don’t worry. I was making spaghetti, but not actively cutting anything. And there were new trivets in the kitchen. And I was wearing new-to-me clothes. So it wasn’t quite as dire as all that.

RA Guy’s Book Club: “How To Be Sick”

awamiba — Mon, 23 Jan 2012 16:26:22 +0000

Reblogged from Life According to Lisa:

In case you haven’t seen it, there’s a discussion over at RA Guy’s Book Club on the book: “How To Be Sick” by Toni Bernhard. Through the magic of Kindle I went from the panic of ACK! I need to go to the bookstore! to AHHHH…. book in hand. I do so love my Kindle. I’ve read the first couple chapters already, keep tissues close by if you are easily emotional, as I am lately. I’ve gone over and answered the discussion questions already as well, but you’ll have to go over there to read my …

Experimentation

awamiba — Fri, 20 Jan 2012 18:12:07 +0000

Since I am on day a billion (okay, maybe day 14) of The Headache That Never Goes Away, I’ve started an experiment to see if I can figure out how to make it go away. I haven’t managed it yet, but I have managed to make it worse a few times.

Things that made my headache worse:

Exercise. Light. Exuberant. I didn’t seem to matter. If I was moving around, it was worse. So I’ve given it up for now, barring the daily stretching.
Bending over at all for any reason, actually. Which I do A LOT and can’t give up.
Lack of caffeine - gave me another kind of headache on top of what I already had
Too much caffeine -also made me nauseated
Loud things, including but not limited to: my kids, the tv, the radio, the ticking of the turn signal in the van, the tippy-tap of the computer keys.
The Evil DayStar
Looking back and forth from the TV to my book and back again.
The same with the computer and my kids across the room.

Other things:

I’m still sleeping ridiculously well. I go to bed at night, crawl in, and next thing I know it is morning. It’s amazing. I don’t think I’ve slept this well since before I had children, maybe not even then, actually. Maybe not even since childhood.
I have been very blessed lately by friends watching my kids some for me while I finish projects that will make my house easier to keep clean & tidy. That has been so very wonderful.
Despite all those good things, as each day goes by I’m having more and more weird little episodes. They seem to be less big (see, even typing I can’t think of the right word) but occurring more often. They’ve started happening in front of other people, other adults. Oddly, this has been a good thing in a couple different ways: 1) people are being more helpful, and 2) people are telling me things I am doing/saying/etc that are weird that I would not have picked up on myself. I’m keeping a list for the neurologist.

Diet/Exercise update

awamiba — Sun, 15 Jan 2012 21:43:31 +0000

I measured in this morning at -1 pound from last week (-5 overall) and -1 inch of my waist, hips, & thighs (just since last week, since I didn’t measure everything that first week; forgot to measure my arms). Which includes the 2.5 cheat days I’ve had, either accidentally or on purpose. I think I’m doing well. It’s very nice to have something going all right. I’ve also found all my workout videos and weights and exercise bands in the last week, too. :)

Neurologist appointment

awamiba — Thu, 12 Jan 2012 19:30:56 +0000

I had a follow-up appointment with my neurologist today. One of those super-extra-long appointments that you’re not quite expecting. My “migraine’s” had been getting weirder of late, so I had my headache chart all filled out and made a list of the extra special weirdnesses that had occurred recently. She studied my chart, asked quite a few more questions, and told me I’d be having more tests run and be getting a couple new medications.

One of the tests (done today) was just to check that I hadn’t accidentally overdone it on Vitamin D. I was way low previously, so at my last appointment she’d told me to up my dosage on supplements, which I did, following her advice about how much. So we’re just checking on that. The other test will be an EEG because she’s concerned that my weirder episodes aren’t migraines after all, that they might be seizures instead. In the end it doesn’t really matter, as the meds she’s prescribing will take care of both of those things, but seizures require twice the dosage you take for migraines. (The other medicine is one of those migraine stoppers you take once the migraine hits – I used to take those a lot.)

So…I came home and started looking things up on the internet about seizures. It was quite interesting, but I’m not getting worked up about it, especially after all that testing last summer that ended up coming up with nothing new. I’m going to try to chill out and not worry about it. At this point, what can I do, right?

Voltaren update

awamiba — Thu, 12 Jan 2012 02:40:57 +0000

My husband went and got my Voltaren prescription filled this afternoon. I always love sending him to the pharmacy. The people there never talk to me outside of asking my name and telling me to sign here or there. He goes in and they get all effusive and full of facts about the drugs I’m taking and how to take them most effectively. I don’t know how he gets them to talk. He thinks it’s just because he’s picking it up for me and is not me and they’re trying to be careful. *shakes head*

Anyhow, 4 things: 1) This “really expensive” tube of medicine only costs as much as one session of PT, which I find to be really cheap since the PT session is only one of like 20 that need to be paid for and this tube will last as long as all 20 of those sessions for the low price of just one and 2) Voltaren did wonders for my unhappy thumb. (My back, well, we’ll see. I did a bunch of stuff while waiting for it to dry and I think I made my back pain worse than it was. Will try on another joint tomorrow and see if it helps like my thumb.) 3. It does not burn. That is so delightful! 4) It smells like old-school lysol, which makes me all nostalgic and hasn’t annoyed me. So for now we’re cautiously optimistic.

Rheumatologist appointment

awamiba — Tue, 10 Jan 2012 17:40:24 +0000

After I spent yesterday perusing the blog carnival about pain scales, I came to the conclusion that a) my pain level, regardless of scale, is usually only about 2 or 3 in a few joints, with occasional forays into 4s and 5s when I’m in a flare. So when I had my 6 month check-in with the rheumatologist today, I decided that instead of asking for the next big gun treatment, I was going to ask for another stop-gap measure, something I’d read about on other people’s blogs that had never been offered to me: a pain relieving, anti-inflammatory gel.

I didn’t start off with that, of course. I told him about my last few months, about how I only flare when I’ve got big things going on (of the stressful variety. ie. Thanksgiving or Christmas) or I do something exceptionally stupid (moving furniture, driving long distances, trying to do all the Christmas crafting in one week, etc.). I told him about my prednisone tapers and how they’d helped. I told him about my in-between days when I’m feeling all right and the days that I can barely move my fingers and I’m not fine. He told me my next option was the IV drugs and physical therapy. I said “No, thank you” and then mentioned the gel. He said the only reason they hadn’t offered it was that it doesn’t always work and that it was kind of expensive. ”More expensive than IV drugs and physical therapy?” No, not at all.

And so that’s what I’m doing. More prednisone when I’m flaring (with a phone call in to the office to let them know), anti-inflammatory gel for the in between pain, working on my PT at home from my PT Folder o’ Goodness, and follow up in 6 months.

Diet/Exercise Update

awamiba — Mon, 09 Jan 2012 22:01:51 +0000

Last week I ended the week kind of on a down note, as I had a bad migraine, didn’t get my exercise in 2 of my 5 days, and knew I had a cheat night scheduled for the weekend ( I get one a week). But I got up two mornings in a row and weighed myself and am officially 4 pounds lighter this week than last week this time. I know 2 pounds were related to lady days, but the other two were from my diet and exercise. :) So now I’m 8% down the path to my goal weight (Yes, I made myself a chart so I could know how much of the path I’d gone down).

YAY!

New diet/exercise plan, day five

awamiba — Fri, 06 Jan 2012 21:55:09 +0000

…an update. :)

So far, so good, I guess. I’ve been tracking my food again on Sparkpeople.com, as they have more food in their calculator than the other place did. (Plus they let me start over.) I’ve been doing really well, calorie-wise, even despite one unintended meal out (Subway, I picked from their low-cal list and came in right on budget) and some interesting meals to try to gauge info on. (Most stuff you can figure it out if you know what proportion of ingredients went in to your particular plateful of food) I am not feeling in any way undernourished and I’m enjoying my lunchtime salads. This week I’ve had one that was Italian (spring mix & American veggie mix combined, sliced real olives, turkey pepperoni, zesty free-Italian dressing), one Mexican (fajita meat, guacamole, salsa, American veggie mix with carrots), one egg salad (boiled eggs, a dab of mayo to hold them together with spring mix instead of bread, crumbled turkey bacon), and one off the back of the Fat-free Ranch dressing bottle (kidney beans, ranch dressing, carrots, American veggie mix, onions). Breakfasts have basically been a flavored oatmeal, a fruit, sometimes some turkey bacon. I’ve been trying to wean myself off the caffeine and drink more water than tea/coffee. Some days I have snacks, other days I eat more dinner instead. It just depends on the day.

Exercise had gone well until yesterday, when my husband was unexpectedly home in the morning during my workout time (his gym just closed without notice). I didn’t manage to exercise at all, but I also didn’t really feel like eating much yesterday either, so we’ll just count it as even? Something like that. The only problem with this exercise thing so far is that I get up, do it, feel fine all during the doing, then when I stop I get this ferocious headache. It’s migraine level pain, but it’s not a migraine –it’s all over the front of my head, not just one side; lights do not make it worse; I am not nauseated. Fortunately for me, I see my neurologist next Thursday, so I can ask her opinion on these headaches. Today I do have a true migraine. I haven’t had one in a while. I think this one was brought on by a trip to Bath & BodyWorks. I hate this weird scent sensitivity that I’ve developed the last couple years. It’s really annoying.

Also next week I get to see the rheumatologist. I’m looking forward to that; we’re going to discuss the drug situation and see if we can get me on something I can live with.

Health resolutions

awamiba — Wed, 04 Jan 2012 14:36:54 +0000

Happy New Year! Over at Life According to Lisa, I’ve been talking about the resolutions I’ve been making for my regular daily life. Some of them are health related, like losing 50 pounds, and some are not, like my goal of writing every day. But I was thinking this morning “what are my health resolutions? what kind of health goals do I need to make?” So here are the things I’ve been thinking about:

1. Losing 50 pounds is not just going to be good for my family photos, but it is going to help every aspect of my life. Losing 50 pounds is going to help all my joints by not placing so much stress on them. Losing 50 pounds is going to help my heart and blood pressure. Losing 50 pounds is going to be awesome.

a. Part of this goal is me exercising more. I’m being more open minded about it this time around, looking at things like Belly Dancing and Bike Riding rather than just generic exercise videos. I’ve started by asking for help on the video suggestions first, but once the weather gets more regular, I’m going to look into some outdoor exercise options. I’ve also dragged back out my balance ball exercises and other things that were suggested as part of my physical therapy last year.

b. Another part of this goal is diet. I’m not just looking into losing weight, I’m looking at foods that will help fight inflammation, foods that will help lessen my migraines, foods that will help me sleep better at night, foods that won’t make me feel ill. Nick had already started putting some of those foods into our dinners, but I’m looking at putting those into my lunches, snacks, and breakfasts as well.

2. Talk to the doctor about getting back on something for my anxiety/depression issues. I’m going to bring this up with the neurologist this upcoming week. I’m sure y’all could see that last year I was up and down and back and forth and all over the place. It just took me a while to catch on. I’ve been reading back in my personal journal again and seeing all the signs. It is just so.very.hard to admit to it and do something about it.

3. Being more proactive in general about my health. Making sure I see the rheumatologist from time to time, not just the PA. Keeping my headache and pain diaries up to date. Etc.