Wednesday, August 29, 2012


Sometimes I'm my own worst enemy. JSmiley had some bouts of insomnia herself. Staying up to 3:45-4 AM and once even until 5. There for a while I thought I was going to have to hurt Big Daddy for blissfully sleeping when I couldn't. Luckily he learned how to read minds and values his life. She went to sleep at a reasonable hour and miraculously, so did I. Woke up several times and such but I got sleep. The next night, she went to sleep and so did I (and again, I woke up early but managed to go back to sleep eventually). And so on, and so forth. Last night, again, she went to sleep easy. It's 5 AM and I'm still up.

Part of it is I'm a glutton for punishment (obviously) and I got sucked into rereading a book on my tablet (which is the best and worst creation - I can read anywhere as long as it's charged and can carry hundreds of books, but there's no, "Hey, it's too dark to read, put that down and go to bed!") so here I am. But at the same time, I don't know if I just get better sleep during the day or what. When I keep strange hours I feel ok, when I slept at night, I'd wake up multiple times, wake up early, fall back asleep and need to sleep until when I'd normally wake up if I were up all night. And be exhausted. Granted I'm usually exhausted but this just seemed like more.

And no, that's not just an excuse for me staying up. My excuse for staying up was rereading book 1 of the Hunger Games. My excuse for STILL being up is I finished it an hour before I had to wake Big Daddy up and I'd either a. not hear it, b. wake up and not be able to go back to sleep, or c. be so groggy I'm irrationally pissed off and wind up waking the baby by yelling at her daddy to get out of the bed before I flip out. I am not a nice person when I'm sleep deprived. At all. The less sleep I've had the more irrational. And Big Daddy takes FOREVERRRRRRRRRRRRR to drag his tail out of bed. Slow riser and irrational sleep deprived insomni-narcoleptic do not a pretty picture make. There has been tears and yelling and exasperation. I hate having to wake him up but if it weren't for me, he'd have been fired ages ago. And I can't work. So the chronically ill insomniac with sleep issues, winds up waking the healthy (as far as we know) grown man. Who gets more/better sleep. The irony is not lost on me.

But anyway. I have 2 minutes to publish and make him wake up and get up. Then maybe I can make my brain shut up long enough to actually get some decent sleep. I know it's unlikely but it'll be ok. As long as no one calls/texts me. *Yawn* Later.

Wednesday, August 22, 2012


FML. No really. My neurologist's office called yesterday and said Dr. S will be out of the office August 27th and wanted to reschedule for the 18th of September but I have another appointment that day so instead, it's now scheduled for September 27th (sound familiar?) I didn't even fight it. I'm too irritated. She did say that since it's their fault they'll put me on the cancellation list. Joy. Get diagnosed with narcolepsy, can't treat it until my doctors figure out what is ok/safe for me, and one reschedules. It's ok, it's not like I need sleep. If my EP reschedules too I'm going to flip.

I'm hoping I can bypass it. I know she ordered the MSLT (my PCP ordered the PSG, and an affiliated NP ordered the drowsy/deprived sleep EEG - so it's not like she's the sole person responsible) that found the narcolepsy but I don't want to wait. The sleep center probably would've put me on something if it weren't for the IST and NCS (and any other letters I may have), at least that was what was implied. But my EP does sleep studies too. AND, he's the one treating my IST and NCS (etc). I'm HOPING he'll be willing to take it on (at least temporarily, if not full time) instead of having to wait a full month on her ideas then coordinating with my EP on if he thinks it's ok. Maybe he'll be like "do/take this" and then in a month I'll just bring her up to date. But that feels shady. Oh well, maybe my freaking doctors should QUIT messing around. I know they are human and "shit happens" but at the same time, it's not fair to me to have to wait an extra month (shorter if they get a cancellation, longer if "something else comes up). Am I wrong for being a bit ticked? Ughhh!!!

Monday, August 20, 2012

Migraines and Medicines

One week until my neurology appointment. I wish Big Daddy could go with me but I doubt he will get to. I'm not even sure he will be able to go the 31st. I don't want to go to either of them alone. Firstly, I hate driving half an hour (EP is 45 minutes) one way, second, I need a GPS, I don't know how to get either place. Big Daddy drove me to the EP and the neuro moved offices so even if I remembered exactly how to get there, I don't know now. That's on my "To Do" list. Worst case I'll get directions from Big Daddy and try to get someone to go with me. Logically he can't go to both, he doesn't get paid for not being there and one day cuts into the check enough without the added day.

I have no clue what to expect. They want to put me on a stimulant to wake me up during the day but it would raise my heart rate. If the dose of my beta blocker is increased would that negate the effect the stimulant has? Obviously I'm "thinking out loud" here, I plan to ask my doctors everything but I'm impatient and a week seems so very long when you're in the dark.

One of the potential drugs I'm thinking will be a complete no-go. I'm going to try not to come off offensively but this one threw me. It's called Xyrem (Sodium oxybate), also known as GHB. My ignorance was in assuming it didn't have a legitimate purpose but apparently, it was created SPECIFICALLY for people with Narcolepsy. I don't think I'd be a candidate since I have small children and Big Daddy sleeps like the dead but even if I were, it'd scare the crap out of me. I've watched entirely too much TV with that drug used in sexual assaults. That's not my concern, I'd be here when I took it, but JSmiley still wakes up, so do the big 2 on occasion. Or if an alarm went off... Big Daddy could sleep through a hurricane. It's just not a good idea.

And then there is the migraine that just. wont. QUIT! I can't remember exactly when it hit but I know it was the 15th, probably after I got home. It's been coming and going since then. And the one yesterday, the migraine meds didn't get rid of it. Nor did I sleep it off. It just dulled it (granted I went from nauseated, stabby feeling and over 75%blurred vision/blind - to just sharp (SHARP) but less intense throbbing). I haven't taken it often though. I was going to take it again but I'm not sure how much is ok. It says 2 every 8 hours as needed though by those standards I'd have been SOL since that would've put me close to midnight. A friend of mine is on a very higher dose so I'd have been ok (as in, an extra dose wouldn't kill me - my friend is/was on quadruple my dose). But it dulled it to tolerable. I can still feel it though. I'll be ok until my appointment. I'd be "ok" either way but if i have to have a recurrent migraine, I'd rather have dulled pain over full pain (though of course it goes without saying, I'd REALLY prefer NO pain). More later.

Sunday, August 19, 2012

I Babble When I'm Tired

I'll go ahead and apologize in advanced. My phone updated late last night and everything is off. Autocorrect isn't functioning properly so it's taking me longer to type (touch screen) and it updated the key board so it's twice as bad. I'll probably have tons more errors than usual or something. I hate the update, hated the phone, got it how I like it then it spazzed out because I wouldn't download the update.

On the plus side, blogger finally let me change my time zone so it SHOULD be correct now. It's 3 AM now and I'm about to go to sleep. Big Daddy and I watched a movie and of course the baby stayed up too. I can't really help that, both of or schedules are flipped. If I can get her to sleep at a decent hour I may take some melatonin. Occasionally should be ok, it didn't mess with me until I took it every day for a week or more.

I'm frustrated though, when I got diagnosed with NCS in February, there weren't many graphics or sites for it. A VAST majority focus more on POTS. Now that I have a narcolepsy diagnosis, I can't find hardly ANYTHING. At least nothing that isn't a joke or low resolution. And there aren't many sites or even fb pages/groups. And apparently narcolepsy affects 1 in every 2000 people. If there are 8 billion people in the world (and I did my math correctly), 4 million have narcolepsy. (1 in 2000, 8 billion divided by 2000? Maybe? I hate math.) But the number of groups/pages/graphics are FAAAAR less than NCS. Ugh. Ok, I'm really tired so I'll quit babbling. Perhaps I'll have a real entry later.

Friday, August 17, 2012

Long Whining Post

Hello 1 AM. We meet again. Not that it's surprising but boy I hate it. JSmiley is awake. Big Daddy said he was too tired to help get her to sleep. I'm not fighting her. She can just lay here with me in the semi dark until she decides to go to sleep. It kind of worries me sometimes, all these health problems of mine. I'm afraid that I'll have passed on something to them. JSmiley has my sleep patterns. When Big Daddy isn't here to help, she sleeps when I sleep (or I sleep occasionally while she sleeps, sometimes she won't sleep when I'm tired and sometimes I can't sleep when she is). The big 2 sleep much better though occasionally DCourtly will keep SDiva up. And prevent people from napping. All my kids nap. I don't know. It's just something that worries me.

I went and saw my "temporary" primary. My primary is STILL on extended leave so I saw her nurse practitioner. I do not like her. At all. She seriously rubbed me the wrong way. I'm guessing she was old fashioned. She looked like she was old enough to retire. I was there for a mole on my back and to try to get something for my anxiety. While updating my medical history, she "couldn't find" some of my conditions.... So she improvised. NCS was put in as "Cardiogenic Syncope" and "neuro syncope" and who knows what else. Oh and she asked me if my ex-stepfather abused me since the only thing that changed the year I started having anxiety was my mom got with Big D's dad and had him. And you know how much I already can't stand most NPs. She DID write me a prescription for prilosec though. And an antidepressant (I asked for something for anxiety). I'm not going to take it though. I know nothing about it, she's weird and I don't know what kinds of changes they'll be making to my meds when I see my doctors. I know my neurologist was going to switch migraine medicines, my electrophysiologist will probably increase or change some of my meds (another topic for another day) and one or both need to sign off on a treatment for the narcolepsy. And one of them or the sleep center is going to prescribe something that the other(s) may agree with. I go back to see her mid-next month to remove the mole. If she still rubs me the wrong way I'm calling my insurance and switching. That's how bad I didn't like her. And she set up an appointment for counseling. I'll try it. I don't like counseling either. It scares me. Especially considering I have all these problems and have heard for years it's all in my head.

I don't know. Oh and I mentioned the pain I've had for years which I hated doing. You read all these medical blogs about drug seekers and I already have this instant mistrust that doctors won't believe me because of, you know, the 13 years of having no one believe me. And because all my conditions I got multiple doctors telling me the vast multitude of tests were either normal or caused by something easy AND only doing "last resort" tests when I pushed and insisted. And what do you know. It was those last resort tests that found the NCS and Narcolepsy.

But I'm always in pain. My back, upper, middle and lower. My neck. (I was in 2 car wrecks several years apart that did some damage and saw a chiropractor) My legs occasionally, ankles sprain/twist easy. My left foot has bothered me periodically since I broke it as a teen. My arms hurt, I can pop my elbows just by extending my arm. My fingers hurt and pop (so does my back and neck). Not to mention migraines. I'm in near constant pain. Often in multiple places. I don't want narcotics, hell I don't want some of the little stuff. I took ibuprofen yesterday because my upper back between my shoulder blades and lower back was killing me. Regular strength. 2 of them. I could have taken at least double (I've taken 1000 mg or 5 regular strength for a migraine). I don't like taking all these pills. The only reason I'm not skipping the Atenolol and Midodrine is because I NEED it and the birth control is because it'd be down right dangerous for me to get pregnant as sick as I am and on these meds and whatever they're going to put me on.

I rarely go to the ER or doctor for pain. I've been to the ER TWICE for a migraine that lasted DAYS and would NOT go away no matter what I did (I know, not an emergency but by the time I gave up trying it was Friday night and I'd have gone postal if I waited until Monday). I've also never been for regular pain. The car wrecks I went for the car wreck and don't even remember if I got anything, the only thing I remember was the chiropractor. The migraine (one) I got a shot. I don't even know what it was called but that shot knocked me out ALL. FREAKING. WEEKEND. I've complained of back pain ONCE at the ER but not primary complaint. I had bronchitis AND walking pneumonia to the point I was gasping for air and coughing up a lung (again, not really an emergency and I wouldn't have gone except it was night, I layed down to sleep and couldn't breathe and started gasping for air). The coughing irritated my back. I got some medicine with a T which I quit taking after like 2 days because either the narcolepsy gave me hallucinations of my bed shaking (which my primary said was ANXIETY) or it gave me tremors. I'm not sure (and this was 2010 so way before I had any diagnosis) but whenever I'd wake up I'd have the feeling that my bed was shaking. It scared the crap out of me and of course I read all the print outs and the side effects of it and the cough meds they gave me said those side effects were common so I quit that too (high strength cough medicine) and switched to tylenol cold. And suffered for a month. All of this has been over YEARS, dating back to when my mom was pregnant with Big D (1st car wreck she was a couple months pregnant) and he'll be 14 in November. I've never asked for drugs, I don't take anything unless I'm in absolutely agony and can't function. I want to know what's causing this pain and how to ease it. I carry a stick of mentholated stuff (kind of like icy hot?) in my purse to help take a little edge off (doesn't take the pain but it helps a little bit). I take hot baths and soak my muscles. I beg Big Daddy for massages and I only take OTC meds when I can't get any relief and can't handle it. I hate drug addicts and would rather suffer than risk becoming one but it's constant and like all my other problems, I want to freaking know why.

She gave me a look and said next time we'd talk about x-rays "or something" but that I was already on "so much". Nothing for pain, no kind of narcotic, no sedatives or any of that stuff. I'm on Atenolol, Midodrine, Prilosec and birth control. (And prescribed an antidepressant that I'm not taking). I don't even want to take that because I'm afraid how it will affect me (even if I didn't have everything else). I just want the pain to stop, to know why, I want to other issues to go away. I'm fast becoming completely fed up with my health. Ugh.

Not to mention, I slept 12 hours yesterday and had a migraine. I guess almost passing out at Walmart drained me. Big Daddy keeps saying "NOW do you think you need an electric cart?!" Yes but not happening. "I'm asking your doctors." I'm 23 for fricks sake. It's embarrassing. And I haven't publicly mentioned narcolepsy except to a "secret" group on facebook and to a handful of people in my life. I know people will automatically assume the same thing I did (which is cataplexy but not many people realize narcolepsy doesn't always mean falling asleep and losing muscle tone like that - that's narcolepsy WITH cataplexy) and I'm embarrassed. And Big Daddy keeps making little jokes so hell no I'm not posting it on facebook. Yet.

Oh and the woman at the sleep center told me to get a medical bracelet/necklace for the narcolepsy. I was going to ask my EP if I should, now I'll just ask him what ELSE I should put. She also told me to get some kind of alarm since I'm always home, usually alone (no adults just me and kids) or ALWAYS keep my phone on me (which I do, Big Daddy got some pointed looks from me on this part of the conversation) or the key fob so I could trigger the alarm if I needed help (and have a neighbor know that it meant that). Ok more later. It's 2 AM+ and JSmiley is only mildly entertaining the thought of sleep.

Thursday, August 16, 2012


"In narcolepsy, sleep episodes can occur at any time. People may unwillingly fall asleep while at work or at school, when having a conversation, playing a game, eating a meal, or, most dangerously, when driving an automobile or operating other types of machinery."

I don't have it this severe I don't think, maybe just a little? Or maybe I'm in denial. I sometimes have a strong want or urge to fall asleep because I'm tired, and it IS all hours of the day and night. I've only fallen asleep at school once and not MEANT to and I was pregnant. I've fallen asleep in class on PURPOSE though. I've never fallen asleep at work (the only jobs I've had (3) were all standing). I've fallen asleep on the phone but seriously, who hasn't stayed up all night talking to their boyfriend/girlfriend at least once in their life? I'm always sleepy. And usually I'm awake on the phone but not talkative. I've fallen asleep playing on the computer, again, who hasn't? I have insomnia, I play on my phone/tablet/computer until I'm tired so I can sleep. It's not like I'm sitting up clacking away at the keyboard and suddenly zzzzzzzzz... Never while driving (though passenger is a different story, that's snooze city). The eating thing, there's been times Big Daddy woke me up to eat and I've gone back to sleep when he left without moving but I don't consider that the same thing. I was asleep and still tired and wasn't woke up completely so I fell back asleep. Not the same in my opinion. So yes, I fall asleep doing several things and have for as long as I can remember but it's because I'm ALWAYS tired. What kid doesn't fight school wake ups, or upon those wake ups, fall asleep in the warm soft cocoon of a hot bath. Is that not normal? You're tired, you fall asleep? Also, frequently, if you wake me up, I can and WILL talk to you, but I will not remember it. At all. That's lasted for as far back as I can remember. There's a running rule here. If I don't remember, it didn't happen. Because I'm not conscious, at least not fully. I can't remember the conversation. When I was a child, mom would whip me or ground me (lots of parents do, it's just setting the story) however I guess it made her feel bad so at night, after I was asleep, she would wake me up, tell me she loved me and that she was sorry, and I'd go back to sleep. I would wake up still mad, not having ANY recollection of the conversation, at all. Big Daddy told the NP today that I have a blank expression when this happens. They think I'm partially awake and partially in REM. ALTHOUGH, Big Daddy never told me about this blank expression, he's always played it up like I was bright eyed, bushy tailed and fully in the conversation. Nice try, my words while like this still don't count in my mind since I can't remember.

"In addition to daytime sleepiness, other major symptoms include cataplexy (a sudden loss of voluntary muscle tone that may be triggered by strong emotions), vivid dream-like images or hallucinations during sleep onset or when waking, and brief episodes of total paralysis, also during sleep onset or when waking. The loss of muscle tone in cataplexy and sleep paralysis involves the simultaneous loss of both extensor reflexes (such as a knee tap and resulting leg jerk) and flexor reflexes (such as lifting the foot and/or leg following a foot prick or stepping on a sharp object). Normally, this kind of reflex loss exists only during REM sleep."

Overall, I have none of this. The day time sleepiness was covered in the first part. I do not have cataplexy and have never experienced it. The hypnagogic hallucinations/dream like images, no. I've had hyper awareness and visual/hearing disturbances brought on by extreme sleep deprivation by in general I don't have any of that. I've had very few sleep paralysis episodes (can count on 1 hand with left over digits). So on the whole, none of this in general.

"Contrary to common beliefs, people with narcolepsy do not spend a substantially greater proportion of their time asleep during a 24-hour period than do normal sleepers. In addition to daytime drowsiness and uncontrollable sleep episodes, most individuals also experience poor sleep quality that can involve frequent awakenings during nighttime sleep, and other sleep disorders. For these reasons, narcolepsy is considered to be a disorder involving the loss of control of the normal boundaries between the sleeping and waking states."

Well that makes complete sense, that part pretty much fits me to a T.

"For normal sleepers a typical sleep cycle is about 100 to 110 minutes long, beginning with NREM sleep and transitioning to REM sleep after 80 to 100 minutes. People with narcolepsy frequently enter REM sleep within a few minutes of falling asleep. In cases without cataplexy, the disorder may be caused by a lack of hypocretin or by various other causes."

I didnt include the part about narcolepsy with cataplexy since that's not me. Skipping to part 2 of that paragraph: Remember my post on the naps during my MSLT, how it APPEARED as if I took forever to fall asleep. Yeah, not so much. And how it felt like I didn't sleep during nap 1 but did the other 4, again, not so much. In fact, the COUNT was right, sleep was recorded in 4 of the 5 naps, but nap #2 was the one it didn't record sleep in. As for feeling like I layed there forever before falling asleep, nap 1 took 12 minutes, nap 3 took 5 (yea, FIVE) minutes, nap 4 took 5 (five) and nap 5 took 3 (three) minutes to fall asleep. And I experienced REM sleep in 2 of the 4 naps. That alone is abnormal, pairing that with my symptoms and another tidbit, I've been diagnosed with narcolepsy. That tidbit being, people who sleep all night and achieve REM sleep (I experience all 4 stages of sleep, 2 of those being DEEP sleep) should not NEED more than a cat nap, if anything, and should not be ABLE to experience day time REM (after sufficient night time REM/sleep). Especially not that quickly or that much.

"Narcolepsy affects both males and female equally and appears throughout the world. It most often starts in childhood or adolescence, and is lifelong."

Again, refer to the paragraph waaaay up there, about the sleep conversations as a child with my mom.

"What are the Symptoms?

People with narcolepsy experience various types of day and night time sleep problems that are associated with REM sleep disturbances that tend to begin subtly and may change dramatically over time. The most common major symptom, other than excessive daytime sleepiness (EDS ***author note: Anyone else read EDS as Ehlers-Danlos), is cataplexy, which occurs in about 70 percent of all people with narcolepsy. Sleep paralysis and hallucinations are somewhat less common. Only 10 to 25 percent of affected individuals, however, display all four of these major symptoms during the course of their illness."

Excessive daytime sleepiness (EDS) - YES
Cataplexy - No
Sleep paralysis - In general, no. Verrrrrrrrry rarely.
Hallucinations - No
Disrupted nocturnal sleep - YES
Obesity - I am over weight, I gained a lot in 2010-2011, mostly during pregnancy and have not lost any but roughly 20 pounds I lost after delivery.

You can read descriptions on the actual site, linked at the top.

"The MSLT is performed during the day to measure a person's tendency to fall asleep and to determine whether isolated elements of REM sleep intrude at inappropriate times during the waking hours. The sleep latency test measures the amount of time it takes for a person to fall asleep. As part of the test, an individual is asked to take four or five short naps usually scheduled 2 hours apart over the course of a day. Because sleep latency periods are normally 12 minutes or longer, a latency period of 8 minutes or less suggests narcolepsy. The MSLT also measures heart and respiratory rates, records nerve activity in muscles, and pinpoints the occurrence of abnormally timed REM episodes through EEG recordings. If a person enters REM sleep either at the beginning or within a few minutes of sleep onset during at least two of the scheduled naps, this is also considered a positive indication of narcolepsy."

Remember my sleep latency was 12, n/a, 5, 5 and 3. That's 3 under the "8" and one at 12. The heart and respiratory rates and nerve activity were normal, and like I said above, REM was seen in 2 of the naps. So my MSLT was "positive". That with my symptoms and history, well, there's my diagnosis.

As for treatments, they said had I been a regular patient, they would prescribe a stimulant to keep me awake during the day/give me energy but a stimulant would raise my heart rate. SO, I have to talk to my neuro AND my EP. Technically I could probably just talk to my EP since he's the one managing my issues AND does sleep studies so he'd be my main person to listen to but I'll still discuss it with my neuro and get her opinion since I already have an appointment with her 4 days before my EP and she's the one who ordered the test that "found" it.

Wednesday, August 15, 2012

In Shock

I'm pretty much in shock right now. I went to the sleep center today for the results of my sleep study, and was diagnosed with narcolepsy. What. The. F___!?!?

And I'll probably be "shopping" for a new primary. I don't like her nurse practitioner and she's still on leave.

I'll write more later, had some bad pre-syncope while getting dinner and prescriptions and I still feel weird on top of nauseated and head aching.

Wednesday, August 8, 2012

Figurative and Literal Heart Ache

Emotionally upset. I can't do this alone, and that's how I feel quite a bit. Even right now with Callie curled up at my feet and JSmiley laying on me holding 2 of my fingers and staring at me. I'm not alone but it's not the same. I need support and a baby can't give more than unconditional love which don't get me wrong, that helps but I need support too.

I try not to write while angry or upset but I have no where else to turn and I've already spent the past 3 hours off and on crying. Big Daddy and I had a verbal and text argument and I'm just hurt. He doesn't get it, at all. He still thinks I can do more than I feel capable doing and I'm TIRED of hearing how people with CANCER are able to do more than me. And? I don't have cancer, I know that but it's not the same. Hell two additional NCS patients aren't exactly the same. One may be worse than me and one may be better than me. I've taken him to appointments, I've printed out documents, I've emailed links and articles, I've texted partial snippets of articles. I don't know what else to do.

I feel like I'm losing my family one day at a time. SDiva understands I'm sick but doesn't understand anything it entails, and she's the oldest, I don't think DCourtly really understands. All they know is Mommy can't take them out to play alone, Mommy is "lazy" (thanks Big Daddy, and everyone else in the history of ever). I don't know how to explain to grown ups that the SMALLEST amount of activity will leave me physically and mentally DRAINED for days, much less to my kids. Literally, like I said before, 6 days of MOSTLY no activity (seriously, drove 15 minutes and SAT) with the exception to a few days I "worked" concession with a few other women, and I spent the next TEN days, on my couch. I barely remember much of what I did during those 10 days.

I can not HELP that. And Big Daddy is yelling at me that he's pissed off that I can go to Big D's games but not the park with them. Which, yes that makes sense but I'm not really ALONE at the ball field. He wants me to go and sit while they run and play, in the heat. It's doable but I'll still be alone. He won't want to sit with me while they play, I'll be expected to follow them around and entertain the baby while he talks to everyone and takes other people, and I'll be on the bench, by myself. With nothing. (Except the baby unless she is playing with them). That SOUNDS exhausting. When I go to the games I'm surrounded by people who enjoy baseball like me, enjoy watching the kids play. They don't leave me by myself. I'm included. They ask how I'm doing.

And then I just feel like the worlds worst person ever. I want to play with my kids, I want to do fun things. I WANT to be part of this family, an ACTIVE part. But I'm too sick. And "no one wants to sit on the couch and be a hermit". I'm sorry I'm not healthy. I'm sorry I can't do the things normal people do. I'm sorry I'm not capable of being the person I want to be, or the person I dreamt of being as a child. But I can't help it. I don't WANT to be sick! I don't WANT to be alone! I don't WANT to look at my kids and watch them prefer to spend time with other people. Knowing my family would rather do other things than spend time with me doing stuff I CAN do absolutely kills me. I know there's the old saying  (something about) not expecting people to change or not having to change for other people and I don't want them to change but I want to be included in the family and currently I CAN'T change. No matter how cruelly I'm treated it's not "tough love" in the sense that tough love is supposed to open someones eyes, my eyes ARE open. But treating me like a burden or like dirt under your shoes is NOT going to make me change because I CAN'T. No matter how hurt I am, no matter how much I WANT to, no matter how much I cry, I'm not going to wake up and suddenly be healthy, I'm not going to be able to go "You know, you're right, *I* am the problem, I'm milking it, here let me do all the things you've said I can do." It's just not going to happen.

And it just can't continue. It's not every day but even once a month like this is too much. I can't live the rest of my life ignored and all but abandoned and I can't raise/support my very young children by myself and I can't live without them. So wth do I do?

I know none of us WANT to be sick but I've never wanted to be healthy more than right now. I don't know how much more I can take.

Saturday, August 4, 2012

Day 1 Continued

I owe Midodrine an apology I think. Firstly I've been accusing it of making me sleepy because I got really tired after taking it but it's not a warning/side effect listed so I think it's just a combination of lack of sleep last night (only 5 hours) and no nap. Of course I'm tired. I can't think very well when I'm tired.

And also, it occurred to me just a short time ago that the Midodrine IS working. Yes it got down to my normal laying BP but DUH Sierra, Atenolol doesn't just lower your heart rate, it also lowers your blood pressure. So it being the same or even slightly up for my normal means it IS raising it. It'd probably be lower if I wasn't taking it. I know, I know. Like I said. Lack of sleep. At least my brain woke up enough to smack me and point out the obvious. I do that frequently. I may not blog about it every time but on the subject of new meds and whether they work/don't work/make it worse, I feel I need to keep that written down and correct. If not I'd probably have called Dr. M and told him I didn't think it was working.

The Atenolol is still working though not as enthusiastically as earlier. My hr is lower than it normally is but it's getting above 100 again when I go upstairs (about the same as what it was at 10, so 1 hour after taking it) and takes a minute to come down when I'm sitting. And I'm not JUST doing it to test the effectiveness. We only have one restroom, and it's upstairs. So are all the bedrooms, which is why I spend a lot of time on the couch. I pretty much only go upstairs for the bathroom unless I really need something.

Anyway, there was a period about 3 hours after I took Atenolol (and 4 hours) where even walking up steps my hr didn't get above 93 and 99 respectively. So it's doing fairly well. 93 - 99 is MUCH better than 125 - 188. I don't think I'll be needing to up the dose. We shall see how it does. Being tired I didn't do much. I was definitely up more and alert a tad more so well see if I get any energy from it and if I can do anything. I'm taking it slow, I don't want to get this Super Woman complex and wind up crashing. Still itchy though. That's annoying.

Day 1 of Medicine

Day 1 of Medicine

I woke up 10 minutes late this morning. Insomnia kept me up long past JSmiley finally falling asleep. But I did it. Didn't take my meds until 9:20 (wanted to take at 9) because it took a few minutes to do orthostatics. Which got me thinking, laying to standing my heart rate increased 31 bpm (I did laying, sitting and standing). And my bp rose sharply from laying to sitting. Isn't that one of the indicators of POTS? Ok so apparently (after skimming the entries since my appointment) I didn't mention that I might have it? I couldn't get a definite yes or no but he kept mentioning it and said some of my symptoms "fit". I'll ask for a straight answer when I go back. Perhaps my holter monitor results in addition to my bp log will get him to give me a straight answer without needing a bunch of testing?

Anyway. I'm not sure how I feel. My HR is definitely slightly lowered. Sitting here propped up (couldn't stay fully upright) my heart rate is in the low 70s. It's usually mid-high 80s or even 90s. The true test was walking up my stairs. It usually gets to 125 (lowest) and stays up (above 100) until I'm back downstairs sitting. It only got up to 115 and while I was sitting dropped back to the 80s so the Atenolol is definitely doing SOMETHING.

The Midodrine I'm not as sure about. it's been pretty normal except one fluke. I'm not sure why it reacted like it did but it read 117/104. I was dizzy at the time and checked it again 3 minutes later and it was 125/82 so I don't know. Lounging it's 114/72 so I don't think it's doing any raising (like I said, I think that one number was wrong but I don't know why). And I feel off. My scalp itches and other parts. I'm slightly nauseated. I feel kind of dizzy, not imminent syncope dizzy, just off dizzy. Big Daddy has the kids and I'm home alone. So I'm staying on the couch. I hope my body adjusts fast or I'll be home bound for a while. I'm supposed to go Tuesday to fill out papers at 9 (when I take the meds) hopefully it doesn't take a while and I'm not dizzy. And that my scalp quits itching. Itchy scalp drives me insane!

Friday, August 3, 2012

Little of Everything

World Breastfeeding Week is August 1 - 7. I'm sad that this will be my last year participating. At least for several years (if not indefinitely). I've decided to postpone starting meds until this weekend. Big Daddy would take about an hour to get home if I needed him and that's assuming he was working near the shop. I could've started today and my neighbor could check on me if I reacted badly but tomorrow it'll be just me and the munchkins for several hours with no one to help if I need it. I figured this way, Big Daddy will be off work and can help me out until I see how the meds affect me.

But I'm dealing with mild engorgement so I let JSmiley nurse once today and maybe once tomorrow. I'm undecided. I wasn't going to but she wanted it and engorgement is uncomfortable. Since Sunday at 8 PM, she didn't nurse that night at all (I was at the sleep center) or Monday until 6 PM (same reason) then once late that night/early the next morning (like probably 1 AM) then none Tuesday or Wednesday. Once today and that's it. So at least I got to participate during my last World Breastfeeding Week. Seeing all the pictures people are posting in my mommy groups are making me sad knowing it's over for us.

WHOOPS! Totally started a blog post yesterday morning (it's almost 2:30 AM) and forgot to finish and publish. I'm glad I put off starting meds because apparently you have to stay sitting up for a while on one of them. I spend about 80% of my day laying flat or lounging. How much "up" do I need to be? Should I sit mostly upright with my back to the back of the couch or will propped up with pillows, lounging, work? All I REMEMBER being told is to take it in the morning and around 4 or 5 in the evening. Apparently when I say "I have no energy" he didn't realize that meant "sitting upright is a chore, a chore I have no energy for." Also that "my sleep schedule is so messed up it's crazy" meant "sometimes it's morning before I even fall asleep".

The post I saw online said her doctor told her not to lay down for 6 HOURS after taking Midodrine. Wtf? REALLY? Also, he told me to do recumbent exercises like the bike etc "like the ones that recline, the more layed back, the better". Basically he said to get the little ones (easier on me) since the upright ones would probably be too much to handle. I asked about yoga (remember it's on my "maybe I'll do this to occupy my chronically ill life" list) and he said "Maybe, some of it requires too much on your part " Great. How can I admit I'M TOO SICK FOR YOGA. That kind of works in my favor. Big Daddy is always "push yourself" and "I think you can do more than you admit" (he still has some trouble grasping the limitations, he's getting there). He was at the appointment (which btw included a young student doctor who looked younger than me, baby face and nervousness) and heard him say it. I can do what now? I'm not "that sick" say what? You heard the doctor, most yoga is too hard. Granted a lot of it takes working up to, is advanced etc. Maybe I can do some beginner? I don't know.

As proof of my "can't stay upright" thing, when I started this addition to this post, I was upright. I'm now slouched to the side at a 60ish° angle with my elbow propped on/supported by a pile of blankets, one leg tucked under the other, the other propped up, knee to toes roughly level with my right shoulder. Kind of comfortable to be honest. Granted part of the slouching could be that I'm tired. (I actually fell asleep before 11!!) But I woke up around 12:30 for some reason (seriously, they HAVE to figure out wtf is waking me up at night and stop it) and despite being bleary eyed originally, I got wide awake. I think I'll go back to sleep shortly.

Wednesday, August 1, 2012

Chest Pain and Holters

My chest is hurting and I can't breathe when I lay down and since I'm allergic to the sticky patches on the monitor, my chest is itching. I can't wait until 1 when I can take it off. I think I'm waiting until tomorrow to start the meds. I can't take the meds while I have the monitor on, he wants me to take the beta blocker once a day, in the morning (so I can't take it today) and the other one I'm supposed to start at 2 times a day, once in the morning (so that dose is out) but he said to take dose #2 around 4-5 so that'd be ok except I don't want to take one without the other. The one I CAN take is a vasoconstrictor (that's the only classification I can think of) and raises BP so I hopefully don't pass out and I don't want to take just it without the beta blocker to balance it out.

JSmiley hasn't nursed at all in over 30 hours. I'm sad. She's doing fairly well. I know when she wants it she's either thirsty, tired, hungry or a combination so I've been keeping food and juice on hand to give her and rocking her to sleep. She gets pretty irate if I'm not fast enough and that cry is heart breaking. We'll be ok, she seems more ok than I am (except those 2 times she's cried) but as soon as I gave her food/drink and/or rocked her she was fine.

Ok, chest pain and shortness of breath are doing better so if JSmiley is agreeable, I may try to get some more sleep.

Also, I find it amusing that every time I have to wear a holter or event monitor, it looks better than the one before. This one, when she first put it on and was setting it, I watched the ECG on the screen. I wish I could watch it still, that stuff fascinates me. Sadly those buttons are only for setting it and turning it off early (except the "event" button on the side close to my thumb that you can't see, I'm sure it's functional).

More later.