Fitness

Not much happening on the home front. My insurance reversed it's previous decision and approved coverage for Provigil (Modafinil). Prior to me seeing the neurology sleep specialist, back when my regular neuro was saying she didn't think I had narcolepsy they said I had to try Adderall add Ritalin first. They had proof of my severe sleepiness (from the MSLT) but since she didn't believe I could possibly have so much at 23, she didn't give me that diagnosis. I'm guessing that's what stopped me from getting a medicine for narcolepsy. I start it next week. I've been back on Topamax for almost 2 weeks. A week at once a day and 4 or 5 days at twice a day and while my headache intensity is decreased, it isn't gone. I've also read Provigil causes migraines. Joy.

I increased exercise. I'd been infrequently walking 2 miles no problem so one day I decided to try for 2.5 miles. I'm not sure if it was the fact that I only took half the atenolol or lack of proper hydration but the last two laps I had frequent palps. I went with(one of) my best friend(s), Britt, 2 days later, took a whole pill, had fun, took gatorade (usually Big Daddy has water but he didn't join me last time). Zero palps. Then it rained for 2.5 days. Went 1.5 miles on the 3rd day once it quit a bit and came home to attempt some light regular exercise. If it goes well I'll update on it too. But for now I'm all snowed on. More later.

Appointment Rambles

It's 8 PM and I'm yawning my head off. We got up this morning at 7 this morning, got paid, breakfast and store. Went to my neurology appointment then to fill my prescriptions and lunch. That was it for my energy. I've been feeling off since Walmart. I'm trying to re-coup my energy. I'm full of yawns, I'll finish shortly.

Yea, shortly didn't happen. Guess yesterday really did drain all my energy. It's 5:33 AM. I've been up since 4.

So to recap. Yesterday we went to get paid then got breakfast, a charger (Big Daddy's dog chewed up all of his), and personal items. Went home and ate. Breakfast was bad. I really dislike McDonalds breakfast most of the time. Big Daddy drove me to my appointment then played angry birds on my tablet. He gets bored sitting still doing nothing. My doctor was amazed that I *really* have both narcolepsy and neurocardiogenic syncope. The neuro sleep specialist who consulted on my case never got back to them so she didn't even know I'd seen them. I couldn't remember the exact date before but I saw him on Halloween. I did tell her it was in October. I told her how he said the sleep study was positive for narcolepsy and barring proof otherwise that's what I have. She was just like "Ok". She looked and commented "Well the tilt test was positive so you really do have both." Yes, yes I do. I went on to explain how the pulmonology sleep specialist thought my NCS was cataplexy and why I knew it's not and how the neuro sleep specialist ruled out other REM disorders since I don't act out dreams. All in all she wound up calling me "special" since "complicated" sounded mean lol. She wrote me a prescription (well, sent it) but I'm not sure which and it won't be ready until tomorrow sometime since they had to order it.

Left there with an appointment for Feb 12 and went to Walmart to get my prescriptions. She called in more topamax too. We got there and it wasn't ready so we walked around (which is why I like using Walmart, regular pharmacies are too small). Got a movie for us, one for the girls and a game (well, 3 in 1) for the PS3. Can't find any multiplayer games we both really want. Got the topamax filled but the other hadn't been called in? I don't know why they'd come in 30 minutes apart. Walking around Walmart drained me. Went and got food and went hinge where I've been alternating between laying and sitting in bed since. Got tired and fell asleep just after 8, woke up long enough to scoot over and back out till 4.

We were going to watch a movie last night but that just wasn't happening. I'm already yawning and it's only 6:20. Ugh. More later.

Narcolepsy and Goals

So far the new year has been mellow. I did 30 minutes on the stationary bike and walked my steps a few times (the last wasn't for exercise, more necessity that just happens to be "exercise"). I need to stay on the ball and keep up with minor exercise. I can't walk the track every day but I have the bike thing in my house so as long as I feel ok I should be doing it. I haven't yet today but it's still morning.

Tomorrow I have an appointment with my neurologist. I haven't been taking the topamax but I plan on discussing it with her. I still need to find a gynecologist that accepts my insurance. I called my primary for a referral and they don't have to do that anymore, my preferred gyn doesn't accept my HMO, my old gyn doesn't accept my HMO, and the "computers are down" at my insurance company so they're supposed to call back with a list of some who accept it. Seems like the Hags of Fate have something against my reproductive organs. This is the only field I have had trouble in almost since JSmiley was born. I've had troubles multiple times just getting birth control, cycle problems, then when I finally gave in and set up an appointment, they don't accept my insurance. Fine let it slide and now again, don't accept it. It really should not be THIS hard to get care for womens health issues. I got in to my EP easier than this. If I could go through my primary they'd be the ones to handle it but no. Ugh. I'm on my last refill of birth control too (well, about to refill it).

I'm nervous about how tomorrow will go. She wasn't convinced I have narcolepsy (though I'm not sure why) but the neurology sleep specialist didn't really do anything. Just asked questions and said the test was positive so until proven otherwise, it's narcolepsy. I downloaded the ebook by Julie Flygare, Wide Awake and Dreaming. It's her memoir on living with narcolepsy with cataplexy. She's offered it free twice on Amazon so far (which is how I got it, I don't have the ability to buy new books until tax time). I read it in two sittings since I got it after 9 PM and went to bed a little while later. But I read over half in one sitting. It was inspiring in a way. I know I don't have cataplexy so it's not the same but I have NCS and IST so I think it'd kind of even up. She graduated from LAW school, ran a marath and wrote a book. I may not be able to do much but reading her book makes me want to find a goal and strive towards it. I already have minor goals, you know, first is to improve a little, to where I don't get tired/sick just by being out. I want to improve my fitness too and lose weight. Those are my goals that were already in place. I've always wanted to be a writer too but I doubt that will happen. I'll find something. Anyway. I'll write more later on (or after my appointment).

2013

(Belated) goodbye 2012, hello 2013!

I woke up long enough to get my new years kiss from Big Daddy and went back to sleep.

Here's hoping 2013 is a good year!

Cheers!

Sick and Family

I'm sick of being sick. I know that doesn't change it but still. Today my GERD is on the fritz so I'm bloated, burping popcorn (taste, this is why I don't like popcorn) and making frequent restroom trips. I need to get this managed. I've taken 4 OTC strength prilosec in two days.

Not like I can do much. Big Daddy checked and the transmission is full of fluid. My neuro appt is in 10 days. I need to get a referral to a new GYN singe my favorite one no longer accepts my HMO. MAYBE I need to do something about this too. Burping/gas isn't on any official GERD symptoms list I've found but all forums say their doctors told them it was and that combined with gastro symptoms is what sent me to the hospital which led to the diagnosis. Is this normal GERD or do I have a more severe case. I don't know. Hard to tell.

I no longer feel as though I'm going to throw up so I'm assuming it has to do with a combination of acid and the amount of gas that results. Tons of burping and other not pleasant symptoms reduce the amount of gas and while I'm still burping (etc) and feel like crap, I don't currently feel like my stomach will expload or like I'm going to puke. I know, this post is so lovely, but it is what it is.
On top of that, I'm having mild to moderate with the people in my life. I was talking to Mom the other day and we got to talking about religion and why I don't go to church. The reasons are very emotional and private so I won't go into it here, at least not now. Anyway that also tied into a conversation about my health. Apparently she's been under the impression I stopped being active and THEN got sick. How she reached that conclusion since I've been sick to sime degree since childhood I'll never know. Apparently that's a common belief about me. Everyone thinks if I "get off my lazy ass" (though to be fair, *most* people say it nicer than that) that I'll get better. I shut it down with her fast. I hope not rudely but I didn't hand hold. I told her I didn't get sick from not being active, I stopped being active because I got sick. I reminded her I never could clean my room normally, I'd have to sit and clean one area then scoot to the next (bending over is huge on my can't do list), even before I "got sick" and back then I could run, go long distances, climb trees. Normal activities for a child. I was sick then, and active. And when I started passing out, those first 5 years I was VERY active. We lived at the beach, I'd go swimming, I was too young for a car and so I walked LOOOOOOONG distances with no issue. I was sick then too. I reminded her of moving here when I was 15, how I was active then. I'd hang out with friends and go places. Again, I was sick then, and active.

By the time I was 16 the insomnia and hypersomnia had made an appearance and though it didn't bug me much then, tachycardia showed up while pregnant. I only know that because of frequent preterm labor episodes where they'd pick up my heart while trying to find hers and get freaked because it was higher than normal for me but too low for a baby. I was active then. By 17, I had my first heart palpitation. I was tired and losing steam then though I didn't know why. I was chasing a baby then too. Still active and "pushing" through it. By 18/19, during my pregnancy with DCourtly, the tachy REALLY ramped up. After it didn't really go away but went back to "manageable". Again, I was active but getting weaker. I had TWO babies, and after a while I got a job at a hospital working 12 hour shifts as a patient care tech on the cardiac floor (har har on that one). I only sat on breaks and to chart. The ENTIRE 12 hours. Well, technically longer since you were suppised to get there 15 minutes early and sometimes had to stay late. Still active, but again, losing steam. The biggest difference there was our house we rented was one floor not two like all the apartments. However those 12+ hours drained me and I couldn't do both. I quit. When we moved where we are now 10 months later I was still active but again, slowly losing steam. I didn't really notice as it was gradual.
But then I got pregnant with JSmiley and it hit HARD. Passing out, pre-syncope, severe tachycardia and SOB, everything. I haven't recovered since. So no. I did not just get lazy and waste away and THEN get sick. Seriously?

And looking back, steps always gave me a problem. Even when I was super active I'd get short of breath. Climbing did too but I was too young to notice I wasn't "right". Oh well. This is long enough without going into others except to say Big Daddy has taken to complaining that I'm "always sick". Well yeah, that's kind of what chronic means. As to my simetimes good days... I have multiple chronic conditions. I'm usually tachy or something, or dizzy, or GERD, or a migraine, or narcolepsy, etc. And then you have common illnesses that most people deal with. Flu, cold, bronchitis, sinusitis, pneumonia, gastroenteritis, etc. I get those too. So while he only gets the "normal" ailments and "I'm only sick every so often", that's all fine and dandy but you don't have chronic conditions on TOP of that. So yes, I'm "always" sick. I'm texting him a screen shot of the definition of chronic.
chron·ic -
1. (of an illness) Persisting for a long time or constantly recurring.
2. (of a person) Having such an illness.

Murphy's Law

If it weren't for bad luck, I'd have no luck at all. Yesterday, Big Daddy was on the way home from work, and the transmission went out on our car and my GERD was acting up. We had the van towed to our friend's dad's house since we live in an apartment and today it's snowing so we can't go look at it. I'm hoping it just needs transmission fluid but my luck sucks. Christmas is pretty much postponed until tax time. We've been playing catch up on bills so this check was going for that. We had to spend $150 just to have it towed. So yea. No car and no Christmas. Unless it just needs fluid, but even then it just upgrades to sucky.

One thing after another. :(

18 months, and where has the time gone?

JSmiley had her 18 month appointment yesterday. As you may remember (or just travel back a few entries to "Emotionally Exhausted"), according to the stats I was given at the time, she'd only gained 1 ounce in 3 months and had to go through a bunch of tests (really it was only 3 but the blood drawn was used for multiple tests). I was given 15 pounds 10 ounces, 27 inches as her stats.

Yesterday and the night before I was worried about it but the nurse passed up 16 pounds and I got exited. She weighs 16 pounds 7 ounces now. That's 13 ounces! Almost a whole pound! It may not seem like much, but considering it took 6 months to gain a pound (between 9 and 15 months and 3 of those months the gain was laughable) it's pretty good. Hopefully she continues to gain this well or better.

On to height. I'm not sure WHY but for some reason the height I was given and the one he had recorded was off. When the nurse measured her I managed to look at her and noticed her shoulders were scrunched, like she was shrugging. The nurse said 27.5 inches. I mentioned to the doctor when he came into the room and he said "Oh good, if it were 27.5 she'd have had no gain since last time in height." I told him I'd been told 27 even but that doesn't really matter, it just makes me feel off since I'd spent 3 months thinking she'd had NO gain except 1 ounce ( and have you seen an ounce of liquid lately?) Anyway, half an inch and 1 ounce is still very little but it's more than "JUST 1 ounce". Anyway, he re-measured her and said she was 29 1/4 inches. That's 1 3/4 inches and 13 ounces gained. MUUUCH better than last time. She doesn't need to be seen again (except if she's sick) until her second birthday.

Also I'm feeling nostalgic about time. My BABY is 1.5, she'll be TWO in June. DCourtly, my middle monkey, will be FIVE in March and starts school in August. And my big girl, SDiva, will be SEVEN in March. She's in 1st grade and will be in 2nd in the fall. I know this amazes me every year but seriously. In 3 months I'll have a 7 year old. In August my cuddle bug middle child will start school. No more joining nap with Mommy and Sissy during the week except sick days/holidays/etc. And in June my little tiny baby will be two. Time goes too fast. I remember waiting on MY birthdays, thinking they'd never get here (I'm impatient) but it seems every time I blink, they're another year older.