Monday, December 24, 2012

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.

Friday, December 21, 2012

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. :(

Wednesday, December 19, 2012

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.

Saturday, December 15, 2012

Remember December 14, 2012

Just a graphic in memory of BOTH school attacks yesterday.

Remember Sandy Hook Elementary School, Newtown, Connecticut, USA - 12/14/2012 - 20 children aged 5 through 10 lost their lives, 18 at the school, 2 at the hospital, 6 adults not counting the shooter, the shooter's mother also lost her life at a second location bringing the total death toll to 28 lives lost.
Remember Chenpeng Village Primary School, Henan Province, China. 22 children were wounded along with one adult (the attacker was apprehended unharmed). It's not clear the ages of the children but Chinese primary students are generally between the ages of 6 and 11.

* 20 innocent babies violently murdered.
* 22 innocent babies violently wounded with a knife.
* 7 adults violently murdered (not counting the shooter).
* 1 adult violently wounded with a knife.
* 1 suspect dead.
* 1 suspect apprehended.

So much loss, so much violence.

42 children between the ages of 5 and 11, violently attacked in one day.

My heart hurts.

Friday, December 14, 2012

There are no words

There are no words to describe this tragedy. I know every loss of life is horrible, but this? TWENTY murdered children. Between the ages of 5 and 10. SDiva is 6. DCourtly will be 5 in March. I just can not fathom the agony. I look at my children and I can not imagine someone hurting them like that.
The attack in Newtown, Connecticut, at least 27 dead not including the body found at a second scene, the multiple children stabbed in China. So much tragedy, so much death, so much pain.

I can not imagine the depth of most mental illnesses as I've never dealt with them, and I know they're saying he had problems. I'm not trying to vilify mental illness, but I can't excuse acts of evil. What that man did was pure evil, regardless of reasons or illnesses. He murdered 27 people or more. In cold blood. He terrorized a school and his family.  I can't get over someone murdering babies. It's monstrous. Evil. ALL the lives lost are heart breaking, but it takes a REAL act of evil to murder innocent childre, barely more than babies.

There just are no words to describe such profound loss.

Guess Who's Back?!

*Peek's head in*

Ok, don't shoot me. I had to step back for a little bit or I'd go crazy. I know this blog is supposed to be my outlet or whatever but I had to just not *focus* on it for a while. I don't know if that happens to others but I haven't researched, written, or visited my support groups this whole time.

I re-read my last entry (from September) and I can feel the tension. Everything kept piling up, I got denied disability based on lies (others, not my own) and was so irritated, I haven't even bothered to appeal. The claimed my meds work (lie number 1), they claimed my migraines weren't bad enough or often enough (sometimes they last days at a time - so lie number 2), they claimed my anxiety isn't a hindrance (I'm 23 and occasionally need my MOM or husband to make calls for me - so lie number 3), they said I can work fast food/cashier (HELLO, orthostatic intolerant anyone - so lie number 4). I mean seriously. There's probably more but I've forgotten. Then I'd read the groups and get overwhelmed. I wanted to ignore the fact that I'm sick, outwardly. I can never forget but I kind of pushed it to the corner.

On to neurology. My next appointment is in January. I had one (the neurologic sleep specialist) and he basically said since the MSLT was positive for narcolepsy that's his diagnosis until proven otherwise. The only other thing was where you act out dreams in your sleep (not sure what condition that is) but I don't do that. I have walked in sleep very few times, and you can talk to me after "waking" me, real conversations - not sleep weirdness - but I won't remember, but no dream acting. I was SUPPOSED to have my follow up with Dr. S 11/26 but all 3 kids caught the stomach flu and the next available was first week of January. I don't need to go back to the neuro-sleep specialist unless Dr. S thinks I need to, we treated it as a second opinion or something like that. He said narcolepsy and agreed I should go on meds. My insurance is being difficult and denied provigil and nuvigil until I try adderall and ritalin or one other (I believe I have to try two of three and it not work then try for the other two). I don't get why they deny meds made specifically for a condition. But, that has to wait for January.

I DID manage to get in to see my electrophysiologist. The actual doctor. SOOOOOOO much better. He discontinued the Midodrine (it made me 10x dizzier than off - but apparently that's one of the meds that was "working" - stupid incompetent FNP tried to increase it but I didn't take her doses) and changed my atenolol dosage. I started on 12.5 twice a day (I quit taking both of those during my hiatus, one because it made me worse and one because I didn't know how if react without the other). It didn't drastically lower it like the 25 mg 1x/day did, just took the edge off, so to speak. If I want/need to, I'm supposed to up it to a whole pill (25 mg) twice a day. Remember it would go back up after a few hours? I don't know. I'll try it next week. Right now I'm still doing half dose twice a day. I think I'm doing ok. It puts me in the 80's baseline sitting/standing (as opposed to HIGH 80's/90's laying while feeling good - much higher if I'm sick) but I think I'll definitely have to up it when treating the narcolepsy. My EP is in agreement there.

Anyway. There's a medical update. Maybe I'll post some real life (non-medical) drama later. The holidays are a blast.

Wednesday, September 26, 2012


Still no news on test results, I think I'm going to call today and switch the prescription (reflux) because it isn't working and see if any have come back. I'll wait until after lunch though since I have to call one of my doctors too and I'm giving them until end of lunch (I called them yesterday and never got a call back, that really irritates me).

I had my neurology appointment yesterday. It was supposed to be tomorrow but the receptionist called Monday and asked if I could come in earlier. And now I'm left in the dark again because she isn't 100% convinced I have narcolepsy, she said it could be or a REM abnormality or hypersomnia or something and while she treats all of those, she isn't a sleep specialist. She also said the sleep specialist that diagnosed me with narcolepsy was a pulmonology sleep specialist and I need a neurologic sleep specialist so I got a referral for that.

(Let's review, I see a NP since my GP/PCP is on extended leave, an OB/GYN for normal stuff, a therapist, and a Cardiologist (though that's only on an as needed basis since I see an EP too) all in my city, I see a Neurologist in a city 30 minutes away in MY state (joys of living on a state line), an Electrophysiologist 45 minutes away in the state I live near and my Neuro thinks the closest Neuro-Sleep specialist is 30 minutes away in neighboring state. I think my city is in the middle of all of them so it's not THAT difficult for ME. Though if SHE needed to see the sleep specialist or EP it'd be an hour to an hour and 15 minutes one way (just to get there, never mind the wait time, appointment, and drive back) so I can see why she was hesitant and asking if it were ok. Her nurse is working on the referral so hopefully I'll hear something soon. The receptionist said sometimes they (sleep specialist) want to review your records first so I'm going to put it out of my mind for a week or so then maybe I'll call since I'm waiting on something else.

We talked a little about treatments and she said she wasn't sure she wanted to give me a stimulant because it would really clash with what my EP is doing but she'd request the records and go ahead and submit it to insurance (she said both drugs are usually fought by insurance whether it be state or the best private insurance, the all usually deny it so it'd be a week or so for that - which is why I said I'd put the other matters out of my mind until next week at the earliest unless they call me).

Then we talked migraines, she asked how the Gabapentin was doing and I told her that it helps but doesn't completely get rid of it and she asked if I had tried to up the dose and I told her about the one where I took 3 plus 2 ibuprofen. She asked if I'd ever tried a prophylactic drug (a drug that prevents them from occurring instead of gets rid of them when they're there) but then started talking about "abortive" drugs, or drugs you take when you get a migraine (our anything else) to get it to go away. We talked about several and there were a few that weren't good matches, one (I think the usual go to "abortive" drug) makes you drowsy. Denied. Some raise/lower blood pressure and stuff and eventually we settled on Topamax (a prophylactic) which I have to take once a day for 7 days then up it to twice a day thereafter. She said it could lower my bp so to keep an eye on it and let her know if it's lowering or anything and that usually with Topamax they increase fairly rapidly but she wasn't going to do that as fast because of my other conditions/treatments. Which is smart. I don't want to start a bunch at once or increase rapidly in case I react to it. Truth be told, as my medication list grows I'm getting kind of frustrated.

I don't know. I'm frustrated by all of it. I know some people have it worse but I'm frustrated. More later when my frustration levels are under control.

Saturday, September 22, 2012

Emotionally Exhausted

Now that my part is over I can write about JSmiley's appointment. It went ok for the most part except she still isn't gaining weight officially. I swear it feels like she IS gaining (and I'm not the only one who says that). But the stats say she isn't.

7 pounds 4.7 ounces (18.5 inches) at birth
11 pounds 12 ounces at 2 months
13 pounds 0 ounces (24 inches) at 4 months
13 pounds 8 ounces (just over 25 inches) at 6 months
14 pounds 12 ounces at 9 months
15 pounds 9 ounces (27 inches) at 12 months
15 pounds 10 ounces (27 inches) at 15 months.

The first 4 months (except birth) she was supposedly "overweight" according to her pedi and at first the slow didn't bother him because "she's just evening out".

I honestly don't understand. She eats just fine. He ordered a BUNCH of tests. Granted one was the test I delayed at her 1 year appointment (lead and I think to check for anemia) since she was already not feeling well and got shots. She got shots this appointment too but we both felt bad after so we came home and slept instead of getting the tests. I don't feel bad for delaying it from Tuesday to Friday. She was feverish for 24 hours after yhe shots plus I didn't get the urine and they aren't giving my baby 3 shots, a ton of blood work, an x-ray AND a catheter in the same day.

I wasn't about to let them cath her anyway. The blood work and x-ray I can't do and there's no alternative but I'm capable of a clean catch urine sample even with someone who isn't potty trained. It took 45 minutes but it's better than a catheter.

SDiva had to do the same tests (not sure if she had to do ALL the same ones or just some of them). I took Mom with me that time and my neighbor this time. I can't hold my kids down. I mean I can but I feel so bad and my first instinct is to stop it. I'm sure I'd probably be able to do it if I had to and I kind of feel bad for not being the one to hold her but it makes me feel bad that I can't stop it. I feel bad holding her down for shots and that's over quicker.

Anyway, they took 5 vials of blood for 7-9 tests. I know one was the lead test, I didn't write down the tests (which is shocking but by the time I thought about it, I'd already handed over the paper). Then I know there was SED rate, chromosome and CBC. I can't remember the others aside from the urine and bone age x-ray.

SDiva's all came back normal and I'm hoping JSmiley's do too (DCourtly escaped the trauma, she's smallish for her age but not as bad as her sisters). I'm semi freaked out still. Her doctor said he didn't think anything would come back abnormal and I feel that way too BUT... None of MY doctors thought anything was wrong either. Logistically I KNOW she isn't me but I'm scared. I don't want my kids to be sick. I mean, no one wants their kids to be sick and I'd still love them, I think I'd probably have it easier to understand since I research everything and I'M sick, I know the drill so to speak, but I don't want my kids to be sick.

I don't want them to develope any of the conditions I have because of how hard of a time I'm having. If I felt like I did in 2008-2009 or earlier it'd be different. I didn't have NEAR as many problems as I do now. I had more energy and could chase them around. Now I have almost no energy especially with the fatigue and I feel like THE worst parent EVER. Especially with the amount of help I need with them right now but I'm hoping that if I can treat the Narcolepsy and get energy during the day I can cut back a lot on that help. Maybe if I can treat my conditions I'll be able to almost eliminate the need for help except on bad days. It's not fair to my kids that I can't get up and do anything. I know it isn't my fault but how do I explain that to my kids. Even my husband gets aggravated with me and he's an adult. All I want is to be a good Mom and these conditions (untreated/unmanaged whether it's because the meds aren't helping, because they clash, because I can't get help, or because my doctors keep rescheduling or making me see ignorant NPs) prevent that and I feel SOO bad about it. I had to make Big Daddy cuddle with me while he slept and try to go to sleep because I had an anxiety episode late last night over it. I don't want my kids to feel as if I don't love them or care. I'm trying everything and seeing all these doctors and tests and treatments because I WANT SO BADLY to be back to where I was in 08/09. I was still sick and by no means could I do a lot but I needed NO help with my kids though breaks were appreciated. That is my goal and I hope I can do it. Anything beyond being back to that would be a plus. I'm just afraid they won't understand, that they'll hate me or resent me for it. But I don't want my kids to ever feel this way. Either the conditions or the emotional stress of needing help with THEIR kids. And I don't want them to have anything else wrong with them. I'd love them regardless and do my best to help them and be their advocate. I just want them to be healthy and happy.

I started seeing a therapist too for my anxiety. I've only seen him once so far for the intake appointment. But he mentioned that Gabapentin is a mood stabilizer. I haven't taken any of mine since my last migraine that wouldn't quit and I noticed I didn't have any anxiety during that week I had to take it off and on so I don't know. Maybe that's why and since it's out of my system I'm back to being moody. But it doesn't help completely with my migraines and I think it's going to be switched Thursday. So what do I do. I can't take it AND something else for my migraines. Wouldn't that be over medicating. See, I can't even manage my symptoms because it all clashes along the edges.
Atenolol isn't completely controlling my tachycardia. Midodrine isn't making me LESS dizzy (I'm probably more dizzy at times). The Gabapentin isn't getting rid of my migraines but IS (probably) helping my moods. If I go on Provigil or Nuvigil for Narcolepsy, it will likely speed up my heart rate AND according to the sites, makes all hormonal birth control less effective. My birth control helps me because another pregnancy right now would likely leave me hospitalized or worse not to mention that the meds aren't that great for a developing baby. Can I get a break?

Monday, September 17, 2012

Another Appointment

Well my follow up with my primary nurse practitioner went well. I guess last time I was her last appointment and she wanted to go home or something. It was a complete 180. She ordered 2 x-rays on my back (to be done one day this week) and removed a large skin tag on my lower back. I thought it was a mole but skin tag makes more sense. It was huge and would pull so I wanted that sucker gone. I've had a mole on my shoulder removed a few years ago. It grew back though doesn't stick out like it did pre-removal. I have a huge pressure bandage on my back and since my back was slightly bowed in when the nurse put it on there, it pulls. The NP told me to keep it on for 24 hours. That'd be 10:30 tomorrow. No thanks. It'll be a miracle if I make it to 5 AM. It didn't bleed much when they sliced it off and if it's bled at all since, it's not enough to make it through the gauze of the bandage.

As to my back, she had just asked if I needed any medicines that day (today - also, boy what a loaded question) but I just told her no "but last time you mentioned some tests to see if we could figure out why my back hurts". I also showed her how I can "pop" several locations just by stretching it out (my elbow and knees), how I pop my fingers and toes. And also how easy it is to pop my neck and back. She got it. I know (and she agreed) that it's bad for me but it hurts NOT to. We talked a little about it and she said she may send me to a rheumatologist. I mean really, what's one more specialist.

I talked about the migraine from Tartarus that I had and how I'd had to take 3 of my migraine pills (instead of 2) and 2 ibuprofen and that if it hadn't gone away when it did I was going to go to the ER (which she obviously agreed with since she said "go to emergency" as I was saying ER). Literally, I'd made up my mind to go even with it dulled from the massive amounts (not really massive, 300 mg Gabapentin and 400 mg Ibuprofen, so a good amount still), it wasn't gone so I figured if it was bad enough to need more than that, I needed to be seen. But it disappeared and didn't come back that severe (though it lasted 3 days). That kind of worries me. I have mild normal headaches often, plus migraines varying from seriously irritating to completely debilitating, and occasional twinges that aren't migraines, like a sharp pulse in my head. I think I'll ask for further testing (if there is any). I'm glad she believed I have them and have me meds but that's like going to the doctor and saying I have a clean break in a bone and him/her just handing me pills. I mean, I'm glad I don't/didn't have to jump through hoops and convince her that I do, in fact, have migraines, but, considering this is the Year Of Discovery (seriously, I go from undiagnosed and healthy/no clue what's wrong, to 3 chronic diagnoses in under a year) I wonder if my luck (whether you consider the luck good - I'm finding out and getting treatment, or bad - that there's stuff there TO find) will stretch further. So far nothing will outright kill me, perhaps secondary if I lose consciousness while driving or fall down the steps. But nothing outright. I'm not sure if I should research. I like to be prepared and I've found if I'm knowledgeable and can ask for something specific and state why it's needed, I usually get it, and THAT is why I have these diagnoses (because I didn't accept "Well all these tests say everything is fine"), but googling can make you think your simple cold is the Black Plague.

In other news, JSmiley has a doctor appointment in the morning. It's her 15 month one. Must remember to ask about her still "spitting up" liquids. I think she may have reflux but she only spits up liquids, no solids and not every time. Luckily she's eating big foods and not all milk but she needs liquids.

Ok, more later.

Wednesday, September 12, 2012

Always sick and so much pain

If it isn't one thing it's another. Mostly over last weeks cold but hit with a stomach virus and womanly stuff. Oh and a migraine straight from Tartarus complete with agonizing all over pain (not just my head and neck). But I couldn't take anything. Even water made my stomach rebel. Luckily it didn't hit until after I'd already taken my morning meds but I didn't manage to take my 5 PM med. But around midnight someone reminded me of that "BRAT diet". Bananas, rice, applesauce and toast. The first little cup of applesauce stayed so the second 2 hours later I took migraine meds. The pain is lessening, but I can't wait until it's gone. I hope it takes the nausea with it.

Friday, September 7, 2012

Rapid Onset of Sinusitis-flu-pneumonia

It's that time again. I've never been so confused before. I'm sick but I'm not sure what's going on. I've slept roughly 27 of the last 52 hours. That's rounding up, so technically it's half of 52 instead of just over half. Most of my sleep is broken. Wake Big Daddy up, take meds, feel my phone vibrate, Big Daddy comes in then leaves (sometimes with all the kids in tow) and I fall right back to sleep so I don't know down to the minute but I've got it fairly accurately recorded.

Not last night but the night before I started having a runny nose and some coughing if I over did it. I remember thinking "I better NOT be getting a sinus infection!!" Went to sleep at 1:30 (1st clue I was sick). Woke up and yup, classic sinusitis symptoms. (I had all the symptoms except I don't know what my temp was so I have no clue if I was feverish.)

But as the day progressed, I kept getting worse. It felt like I had the flu on top of sinusitis. And again, I had all the symptoms. I felt so bad mid-evening Big Daddy commented on it. He's always talking about knowing when I'm so sick I can't function as opposed to normal drained sick but semi functional counting "spoons" etc. I. Looked. AWFUL!!! He was all "NOW you look sick!" No, now I look like death warmed over. He took all the kids with only minor complaint from me (he was joking with me after a short nap that wasn't enough, and I got ill, I don't do jokes when I'm sick). By the time I woke up at 10 to eat, I felt like I had mild pneumonia. Again, every symptom except I didn't know my temp and the only gastro symptoms I had were nausea, none of the other gastro symptoms. Everything hurt. My legs and arms, my back was in major pain, my chest hurt when I breathed deep or stretched. It hurt to breathe. You know how your lungs feel when you inhale pool water and cough it back up, how it feels after that? That's how it felt. I had a killer migraine. My whole neck was completely stiff. I was in soooo much pain it isn't even funny. I came close to going to the ER because of the rapid onset of symptoms and the pain. If it has been even a fraction worse, I'd have gone. As it is, I text mom well after her bed time (she told me to go to ER) and woke Big Daddy up. Of course he'd rather sleep so he left it in my hands and I'd rather not hear him complain so he said if I still felt bad in the morning he'd call in. And went back to sleep.

JSmiley was still awake but the pain was so bad I couldn't move much less focus on getting her to sleep so I got up and took a half dose of liquid Tylenol cold (only half because it was the night time formula and J was still up) and a full dose of gabapentin. By the time Big Daddy got up, I felt marginally better. Today I slept a lot again but the symptoms were FAAAR less. Less than normal sinusitis even. Talk about whiplash.

But some symptoms leaked through occasionally. A spasm here and there mainly. But as midnight approached, the pain gradually started to return. By 1:30 (24 hours after taking all those meds) the headache was approaching painful and the neck stiffness was returning. So I took more gabapentin. But now I'm worried that my symptoms are severe and the drugs are masking it which keeps me complacent and at home. I think tomorrow I'll forgo gabapentin and Tylenol cold and see if the pain comes back. If it does I'm going in. Yes medicated the pain is pretty much GONE but unmedicated it's close to excruciating. Even now, a couple hours aftee taking it the pain isn't completely gone. Maybe because I just took the gabapentin and not both but still. More later. J is finally asleep.

Saturday, September 1, 2012


I hate nurse practitioners. I've had 1 good experience with a NP in the history of ever. I'll go ahead and warn you, this is not a sunshine and rainbows post. I'm pissed and I cuss a lot.

The one I saw, I seriously wanted to hit. She didn't even mention the NCS and acted like 95% of my issues are completely my fault. I'm livid. She said my heart rate is still fluctuating and I'm still dizzy because I need to STOP drinking caffeine all together (so my fault), drink 2 additional liters of fluid (my fault), exercise more BUT NO MORE THAN 5 MINUTES (wtf will that help? My fault). The narcolepsy she said to stop drinking ANYTHING even REMOTELY sweet after 4 and no eating AT ALL after 6 and that'll make my narcolepsy better. Uh yeah dumb ass except I drink caffeine BECAUSE I CAN'T STAY THE FUCK AWAKE. How will cutting it out completely keep me awake during the day? Fucking dumb ass. I KNOW I could eat/drink better but it is NOT the cause of my problems. In fact, the week I passed out 3 times, I barely ate and didn't have ANY caffeine AT FUCKING ALL. (Stomach virus). Fuck. The WHOLE appointment I was made to feel like it was completely my fault that I'm sick.

According to her, the ONLY changes I need are more fluids, better eating (which is exactly opposite of the add salt), compression thigh highs, no caffeine and to undo the deconditioning, and added 1 extra.dose of midodrine. Apparently that will cure ALL my heart issues. She did say she'd ask Dr. M if it'd be ok to try a really low trial dose of provigil to see if it would mess with my hr but that was the ONLY concession. I'm fucking tired of people acting like it's my fault or that I'm making it up or that it's something else. I'm PISSED. So FUCKING pissed. Omg.

I really really REALLY wanted to go off on her. I didn't just blindly take it. I stood up for myself but still, EVERYTHING was blamed on me. Ugh. I'm too pissed to continue and this was 12 hours ago. I think I'm going to request NO nurse practitioners for all my doctors (my appointment SAID Dr. M) and try to get in before 3 months. A, her changes were stupid, B, the whole point of a 1 month appt was to see if it was helping and it's not and her changes were stupid, C, I'm pissed.


Not helping. Fmlfmlfml

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.

Tuesday, July 31, 2012

More Sleep Study and Insomniac Anxiety

I swear the universe doesn't want me to sleep. I couldn't sleep when I got home and I developed a migraine. Fun right? I still feel like crap. I actually feel like I'm circling the proverbial drain. Can't breathe, can't sleep, heart pounding, pain, just everything. I have a feeling my expectations for tomorrow are too high. I have SO much going on in my body but it feels like he's just focusing on NCS/IST I mean, surely a beta blocker isn't going to help everything. The shortness of breath is a real bother. I feel like SO much hasn't been addresses and one appointment isn't enough to get everything solved but I feel like utter CRAP. I WAS asleep but Callie decided to play with something at midnight and it woke me up somehow. I guess the scratching. Then the little brat hoped up on my lap and promptly went to sleep.

Yesterday was weird. No one really said anything about the heart rate dropping. The new tech (woman) kept saying it was normal to fluctuate in your sleep, true, but my fluctuations were 60-80. The 30s-40s were an ADDITIONAL fluctuation. I text mom about it and she called when she got off work and said she'd looked it up and it said 40 was normal sleeping heart rate for someone who is ATHLETIC. Which does not describe me, at all. I'm immensely irritated that every time I turn around, medical professionals are trying to act like stuff is normal. 1. No it's not, 2. even if it were normal, that normal usually pertains to healthy, active, athletic people. I am none of the above.

The rest of the sleep study was weird. I don't know how much I managed to nap. I had "dreams" where I wasn't sure I was awake, asleep, or half and half, but if you're half awake, doesn't that count as not dreaming since you have to be in REM to dream? It couldn't have been long though. It would take me several minutes to relax and 2 of the "dreams" I had, appeared as if I was just picturing stuff in my head, awake. Like close your eyes, think of something, and whatever you see, that's how my dream felt, so I wasn't sure if I was ACTUALLY asleep or just "trippin". But both of those "dreams" were about my cell phone, imagining text conversations so I THINK it was legitimate dreams. Though I've never dreamed where I was laying in the same position in my dream as in real life. It was disorienting. The second "nap" was after the guy left and the girl came in. She didn't put the pulseox on my finger and the LAST nap she didn't turn the light out. Oh well. I got fast food for breakfast and italian for lunch. The naps were disorienting and obviously my sleep issues don't like being timed. It wasn't "sleep 20 minutes", it was lay there and fall asleep plus dream all in 20 minutes". If it took 19 minutes to fall asleep, I'd get 1 minute of sleep, 15 minutes to fall asleep, 5 minutes to sleep. Can you imagine why it was so disorienting? I thought the male tech was joking when he said it was brutal. It was taxing. I haven't got off my couch except to potty twice since I've been home. Sure everyone is like "what's so difficult, you got to nap all day." Yea, not so much. I got to TRY to nap, but that was on top of a sucky nights sleep. Actually, to be accurate, they wanted to see if I could fall asleep (is it bad that I could with just 20 minutes, multiple times) and which sleep cycle I went to. If I remember 3 dreams, does that mean I went straight to REM?

And my naps last HOURS, not minutes. I can sleep hard for 4 hours and consider it a nap. 2 hours is a good nap too. An hour or less is a disappointment to me. 5 minutes damn near drove me batty. And to top it off, JSmiley isn't completely weaned yet (she's nursed twice since Sunday at 8 PM - it's Tuesday at 3:30 AM) so my breasts were hard and engorged. Talk about OW. I had forgotten how much engorgement hurts. Even hand expressing in the shower didn't help. Also, the use some kind of medical water soluble paste to apply the electrodes to you/your scalp. I have thick hair. He was generous with the paste. The electrodes were cemented to my head. OWWWWWW. The tech used a water bottle of lukewarm water and a wash cloth and one of those took 3-5 minutes of squirting, scrubbing and yanking. Did I mention I'm tender headed? Yea.

I NEVER want to do that again. Ever. I just want to hook a magic computer to my body and run a diagnostic program to find out EVERYTHING that is wrong with me and how to treat (if not cure) it. If only life were that simple. Maybe if I were an autobot. I had a similar idea when I was trying to conceive only it was an implanted button that was skin color and you'd push it and if you were pregnant it'd turn pink/blue depending on gender/sex (I'm putting both terms since there was recently a huge debate on which is the correct term to use - as usual) and would look like a pie graph if you were having multiples. All in one hpt and gender/sex reveal instead of waiting weeks, and it was good immediately upon conception, no waiting until a missed period or until the anatomy scan/birth. I know, I have an over active imagination. It was mostly wishful thinking just like the magic diagnostic computer. It sure would make my life a touch more simple. And I love things that make my life simple. Anyway, it's after 3:30 and my appointment is at 10:45 so I should try to get some sleep since I should get up at 9 (appointment isn't in my city) and I have to get Big Daddy up/motivated and sitter for the kids. Now if only I can keep Callie from waking me up AGAIN. Silly cat. She's lucky she's so cuddly.

Also, my follow up for the sleep study is September 5, tentatively. She said when they get the results/review/whatever they'll probably move it up. Ok, seriously, going to sleep, try to anyway.

Monday, July 30, 2012


Someone remind me again why I wanted to do this?! Who would have thought a simple sleep study would be so much BOTHER! I want to go home. And it's only 9 AM. The tech said it'd be probably 4:30 before we're done. I'm so tired.

Got here at 9:15 and say outside with Big Daddy for a little bit then we both walked in. He left before I got wired up since he has to work today. Got hooked up and layed down, text Big Daddy and tried to go to sleep. I WAS able to but not very easy. Took a few minutes just to get comfortable. I also woke up a few times, at LEAST twice, possibly more. Woke up at 2 and could NOT go back to sleep. The tech came in to ask if it was a pretty typical night, what with being restless etc and I said yea, and then he told me he'd been watching my heart rate. I'd warned him that it probably WOULDN'T get high, but if it DID, it's normal for me. He thanked me for warming him just in case since if it HAD spiked he'd have come woke me up. But anyway, he said my heart rate fluctuated sporadically. I'm not sure why, he said MOST of the time it stayed between 60-80 which is normal when I'm sleeping but twice it dipped to 38 (!!!) and more than that down to the 40s. I don't know why. Neither did he but he said he would ask the doctor and I'll ask Dr. M tomorrow.

They provides breakfast (fast food) and then at 8 I tried to take the first 20 minute nap. I tossed and turned a but (despite being tired) and I MAY have dozed briefly. I'm so tired. I want to go home. I'm having SO much trouble falling asleep and this 20 minutes to fall asleep SUCKS. To add insult to.injury, my back has been aching all night and it's just getting progressively worse. And my chest started hurting last night and while laying it's pretty uncomfortable. Did I mention I want to go home yet?

Friday, July 27, 2012

Random Rambles

4 days until my appointment and 2 until my sleep study. The sleep study is going to irritate me. I have to stay there until 2-4 the next day (and then my appointment the day after). The regular sleep study was awkward enough. Strange place (it's a whole different hospital/sleep lab), away from my family, long time there, medical professionals, etc. And Big Daddy works the next day so he'll be next to no help (they say you can bring someone).

I went today to sign up for disability. It'll probably be a pain in the rear but I have my appointment (7th). I think my neurology appointment may be that day but I don't know. I need to call and find out and reschedule if it is. I need to call my primary doctor too, supposedly she's not there any more and if not, what I need to do. Ugh, so much to do. And I'm tired and sick. More later. Big Daddy might be taking me to the movies later if I feel ok.

Friday, July 20, 2012

Scheduling Rants

Now that my phone has more than 2% charge I can write. I'm going on 2 hours of sleep though so I will probably ramble. That typically happens when I'm sleep deprived. I'm so tired but sleep isn't happening. Actually, I was laying with JSmiley and a deactivated cell phone rang (neighbors phone died so she borrowed it and then got a new one). I have no clue how that happened but it was enough to jar me out of that place where you drift peacefully to dreamland. So I finished the last few chapters of HP7 and am now writing. Perhaps I'll try again afterwards.

Anyway. When last I wrote, I was still having trouble reaching my OB/GYN or getting a call back. I called Friday, Monday, Tuesday, Wednesday, Monday (answering service answered, at 5) and Tuesday. Sure it was semi out of their hands but the first Friday-Tuesday they didn't have the info so they couldn't call, didn't call me so they didn't even TRY. Called that final Tuesday and she had a list of approved birth control from my insurance. So that's done.

Then last night Big Daddy brings in the mail and there's a letter from my EP that said Dr. M had a change in schedule and *I* needed to call to reschedule my 8/1 appointment. Called this morning and the receptionist said "His next available appointment is August 30 at X:XX A/PM or August 31 at X:XX A/PM." Excuse me? Seriously? You send me a letter dated the 12th that doesn't get here until the 19th (different city, different state) instead of CALLING me, over something I have no control over and because you're a sub-specialist, you want me to wait a while MONTH because it conflicts with his schedule? How about not. I didn't SAY any of that since it would be rude but I definitely thought it. What actually happened was (M = Me, R = Receptionist)
M: "......................... I don't, I don't know............."
R: "You don't know... which one you want?"
M: "Yes, I've had this appointment since FEBRUARY and I can't wait another month to start meds, I can't...."
R: "Well that's all he has, he's not here today and on vacation next week and won't be in on the 1st and he's double booked."
M: "...................... I guess.... I don't..............."
R: "Would you like me to put in a note for the nurse to call you?"
M: "Yes, please."

Not 5 minutes later the nurse called.
She asked how I was doing and of course I was frustrated at the situation and it's a stranger (see, I can NOT talk to strangers in stressful situations) and I have only had 2 hours of sleep so I was practically in tears trying to explain why I couldn't forgo meds for a whole extra month. Sure I COULD but that's an extra month of not being active at ALL. There have been times over the past 6 months where I almost called and asked to be on meds before my appointment, unsupervised. Some days were THAT bad. I don't beg easy.

Anyway she cut me off and said they'd looked at the schedule and could put me down July 31 "That's a day sooner." A. No shit, really?! B. I was happy with MY allotted appointment. *I* didn't want it to change. C. It isn't MY fault the doctor needs several days off in addition to his 1+ week vacation. If I could change it, I'd be ok sticking with my original day/time. I'd even be ok with an extra week/10 days or so (I wouldn't be too thrilled the higher the number got especially though I'd try to manage). But a whole month? 10 days makes me cringe but is more understandable.

But seriously? So no one on other days (that he's there) will be affected, they'll get their normally scheduled appointments that they've been waiting 1, 3, 6, 12 months for, whichever, but because the doctor has had some things come up, *I* have to suffer until he has an "opening". I don't know WHY he needs a few days off plus a vacation, and I hope it's nothing bad but seriously. None of that is my fault. All in all the nurse made me feel like a brat. I didn't ASK for an earlier appointment. Not ONCE have I asked to be seen sooner. I've patiently waited my turn unless something else was offered (other doctors/tests with cancellations) unless I missed it (and then I still waited patiently) or it was inconvenient in which case I passed and it was undoubtedly offered to the next name on their list which I did not ask to be put on. :/

Ugh I need sleep. I don't even know if I had more to write. I suppose if I did I'll remember it later.

Tuesday, July 17, 2012


My phone only has 16% left and my charger is out of reach so I don't know if I'll be able to finish this right away. Big Daddy is where my charger is and JSmiley is on me (and Callie O.o ).

The past week has been EXHAUSTING especially considering I didn't do much of anything (at least to healthy standards). That's part of the reason for my blog silence. Last Monday Big D had to go clean the baseball field and get it ready with his team and the senior league for all stars since district was held here. We were there 5 or 6 hours and the most I did was carry JSmiley in my wrap. Tuesday we went out there for what was supposed to be the first of 2 to 3 games. Got Big D, gas and to the field (without my kids) and it started pouring. Wednesday was canceled outright before I left the house. Thursday I had to go pick up Big D at his friends and on our way to get his uniform, they called to cancel. Got gas, took him to drop off movie rentals and then back to his friends. Friday we got gas and to the field at 5. They didn't start playing until 8 and had to quit for half an hour due to lightning. I helped in concessions (with 2 other women, my friends) and helped carry some crates of drinks (hr got past 180 on that). Got home close to midnight. Saturday they were scheduled but it was one thing after another. One field was too damaged due to rain and no drainage system. The back up field, the press box got hit by lightning and most of the power was out (including lights) and the power company said it'd be a bit since it's not residential. So no game and we went to Kim's to eat and hang out. Got home at 1 and the most strenuous that day was driving to and from. Sunday was the last game but it was between 2 senior league games so I was there 7 hours. Again the most stressful was carrying JSmiley in the wrap. That was a BAD day. I got dizzy frequently but I had the van so Big Daddy couldn't come help me and I wasn't about to risk driving dizzy so I say for quite a bit. I spent 99% of yesterday laying in bed in the A/C. I definitely over did it this last week so THIS week and next I'm relaxing as much as possible!! Because the week after that is my MSLT and my EP appointment. Regular baseball is over but Fall Ball starts in August or so. But I'll be on meds then.

In other news, my OB/GYN's office STILL has not called me back and frankly, I am getting pretty ticked off. I called Friday, Monday, Tuesday AND Wednesday. Called today/yesterday (it's 3 AM) too but got the answering service. What the hell? Why does the universe not want me on birth control? This is the second time this year I've had trouble getting it. Grrr. Ok, 5% left, more later.

Saturday, July 7, 2012

6th Wedding Anniversary

Baby you don't know, what you do to me. Between me and you, I feel a chemistry. I won't let no one come and take your place. Cause the love you give can't be replaced. See no one else love me like you do. That's why I don't mind to spend my life with you. Wanna please you, in anyway I can. I wanna share my world. Don't you understand?

Your love is a one in a million it goes on and on and on. You give me a really good feelin all day long.

Turn me inside out, make my heart speak. Need no one else, you are all I need. Personality, in everything you do. Makes me love everything bout you. Your smile, your style, so fly, I can't deny. I got a crush on you and that's true indeed. And I'm digging you, you're making me believe.

Aaliyah - One In AMillion

Happy 6th Wedding Anniversary Big Daddy! <3

Insurance Troubles

I'm so ticked today it isn't even funny. Surely part of today was a mistake. (Well yesterday, it's 1:30 AM.)

So I called up my OB/GYN since I need to get some birth control so I don't accidentally wind up pregnant on these meds I'll be starting in August. I wanted to have them in case JSmiley weaned early (cry) or for when I get my monthly. Which ever. I need a combination pill instead of the mini pill since this is my last month nursing and there isn't really a worry in diminished supply after I wean. Anyway, called them up, told the receptionist what I wanted and which pharmacy to send it to. She put a note in to my doctors nurse and in less than an hour Vicky called to tell me it'd been sent.

2 hours later I call the pharmacy to see if it was there/ready. When I tried to get on birth control in January or so Vicky sent it to the wrong pharmacy so I spent 3 days trying to figure out why she said it was ready and waiting but the pharmacy said they didn't have anything then when we figured it out, I went to that pharmacy and mine had called them and had the record sent to them and Big Daddy wasn't happy going back and forth empty handed. In the end, my old insurance wouldn't pay for the mini pill so I paid out of pocket which is fine. It was something like $25 so no big deal by itself and I quit after one month for other reasons.

But anyway, the woman who answered said it was ready but didn't say what it was or anything just "We have one." Got to the pharmacy and gave them my new card (insurance changed 7/1/12) and waited. The woman came back and said "Unfortunately, both the name brand and generic need prior authorization before they'll fill it." She also asked if I new what prior authorization is, which I do, but I was never told I'd need prior authorization for anything. I've never needed it before with my old insurance, and I've had the birth control I'm trying to get. Come again? I need prior authorization for birth control? SERIOUSLY??!!??!! Surely not. So I called my doctors office and told them. The receptionist said she'd tell Vicky/put in a note/message for her and have her call and see if there was a mistake. So even they were a little confused as to why plain birth control pills needed prior authorization. Unfortunately that was roughly 3:30 PM yesterday and no call back so I have to call on Monday. And it wasn't that the pharmacy was closed. My doctors closes at 7, it's been 8 when I got a call back before. The pharmacy closed at 9. So I'm a little mad about that.

But I was looking online at what is supposed to be the rules and things for prescriptions. They have a .pdf on what requires prior authorization in 2012 and the birth control I requested isn't on it. Nor is it on the list of limited drugs they'll cover (as in they'll only cover x amount). But viagra is. And viagra isn't on the prior authorization list. It covers 4 per month viagra. If I SERIOUSLY need prior authorization for birth control yet anyone can get 4 viagra per month with no issue, I am going to FLIP!!!

So I am going to call my OB back on Monday, maybe the pharmacy, AND my insurance. I'll be starting 3 meds in August at least. If I have to jump through these hoops all the freaking time I am not going to be happy. At all. Some prior authorizations you have to renew MONTHLY. As if I wasn't exhausted enough. Now I have to worry about whether my insurance will cover stuff I need or if I have to remember to get pre approval or whatever monthly/yearly/etc.

Why did they have to get rid of my old insurance? It was soooooooooooooooooo much easier. :/

Thursday, July 5, 2012

Slow Phone

I've been trying to publish a short (more pictures than words) post on the 4th/Independence Day but it's lagging (probably due to the few pics/slow cell phone reception combo I have going on). It will probably post eventually but it's now the 5th (12:09) so it's late. (Even though my blog says I'm in a different time zone than I really am.) So in the mean time... Happy Independence Day America!

Wednesday, July 4, 2012

Sleep Deprived Insomniac

Sick of not sleeping right or not being able to sleep at all. I've been trying to sleep since 10:45 PM. It's 3:22 AM. I'm dog tired too. My eyes are only half open typing this but I just can't.

I woke up tired yesterday (after 8 hours of sleep) but didn't get to take a nap due to two things I had to do. By 8 PM I was spacing at Mom's (one of the things was a baseball meeting). Came home, are tacos, watched an hour of Harry Potter and the Half Blood Prince (while eating) then decided I needed sleep. That was almost 5 hours ago. Wtf man.

Luckily it's the 4th of July so Big Daddy doesn't have work and I can hopefully nap today. At least for a bit, Big D has practice tonight (which again, wtf man?!) and we usually drive half an hour (in massive traffic) to see fireworks. Sounds exhausting. But it's for the family. It's not like I'm driving it.

Anyway. I just wanted to complain about my jacked up sleep habits for a bit. That they still don't know what's up. I hope the one on the 29th shows something. SOMETHING is wrong. Maybe my melatonin levels are off or something. Something is causing it. And I can't take melatonin without getting bradycardia or close so wtf. I just want to sleep like a normal person! I swear if this test doesn't show something or if my neurologist doesn't DO something other than suggest melatonin I'm going to snap. Or cry. Possibly both. Probably both, actually.

Ugh. I get mad when I'm sleep deprived, can you tell?

Sunday, July 1, 2012

Bad Weekend

Bad health day. I noticed part of it yesterday, that my heart rate was easily spiked much more than normal. Usually normal activity, when I feel well is low 100's. Remember the below 100's is when I'm in/on the bed or sitting/laying on the couch. I thought I should clarify since I feel goofy saying "I have IST" and such then following up with "My resting heart rate is 86." Remember that is laying flat on my back in bed (or on my side). Sitting on my bed (eating, writing, reading, etc) it's 96, I get up, walk, etc and it goes over 100 but as long as I feel well and don't over exert myself, I'm typically ok. Yesterday with activity it was in the 140's (walked up my steps once to the bathroom, there is only 1, it's upstairs, and that was at 1:45 PM so the power was still on). Then today at Mom's, I went inside Mom's (she was outside with us) to let SDiva potty and grab JSmiley's seat and our stuff. Let SDiva out the door in the living room so I didn't have to help her avoid my Mom's pit bull "pup" Athena who is hyper as crap. Athena isn't even 1 (she was born mid-August) and it takes effort to hold her and when she stands she can put her paws on my chest (I'm 5ft7in). If I didn't let her out I'd have had to carry the seat, beach bag (with all my/our stuff) and keep Athena off SDiva, so I just let her out the door. Athena is kept in the kitchen with a door keeping her out of the loving room (when my kids are there because she's bigger than them). Anyway, Mom's house is single level (remember I keep saying I need a single level) and all I did was walk inside, get our stuff, walk back outside and my heart rate was 153. Came home and walked upstairs to wake up Big Daddy (he stayed here last night, the power came back on when they said, between 12 - 1, he went to bed after it came back on so he wasn't suffering in the heat) and my heart rate was in the 180's. Came back down and sat in the A/C (I'm actually cold now) and it was back to 105.

I also felt dizzy and kept thinking I'd pass out today (haven't yet though) or this week. This heat isn't good for me at all obviously. I'm laying on my couch with the air on full, cold and trying to relax and my hr is back to normal but I have a headache. BP appears normal now but I didn't take it when my hr was high so idk. No clue about sugar or anything or if I'm still as dizzy as I was.

I definitely feel foggy though. Could be from lack of sleep though. Fell asleep between 4 and 4:15 AM and got woke up at 9:45 AM. I feel awful. Big Daddy took the girls to the store to get a few groceries, well go later for more but I didn't feel well enough to go.