Thursday, April 26, 2012

Deprived "Sleep Study" - AKA EEG

So the deprived sleep study was just a 30-45 minute EEG. I'm not sure how I did since I can't sleep on my back so I just layed there the whole time "resting" and trying to sleep. I think the no caffeine and forced insomnia is a bad thing. I wa really hyper aware/sensitive. When she attached the leads it felt like cold water trickling down my back. Also my head felt kind of out of it. I wonder what my results are. Or even what the purpose of it was. I also hope the results are ready Monday. I have to travel a little more than double what I thought, the receptionists called me today and said Dr. R is on "extended medical leave" and I have to see a nurse practitioner at their partner office in another city. I'm curious as to both why she's out and for how long. I hope she's ok but is this long term like 1 month or long term several months? I'm more ticked at having to go to another city. She isn't the only doctor there. Though maybe it's just short term since they're having to reschedule multiple appointments over a course of who knows how long. I don't want to travel to the other city all the time, I'd rather find a different doctor. Plus I don't like nurse practitioners?! Yea. I'll see them if there's literally no other immediate option but I'd really rather not. I don't like my OB/GYN nurse practitioner, or the anesthesiology nurse practitioner or any I've met so far. All of them annoy me. So does Dr. R but not bad. Most of the time.

Ok, still tired. Time to lay down.

Monday, April 23, 2012

Pains galore

Today is an iffy day. It's cold out so I'm already not liking it. JSmiley fought sleep until around 1 then we slept until 12ish. The 2 mile walk didn't hurt as much as I thought. I was only a little sore. Didn't do much sunday. Slept til after 10 and lounged.

It was pretty frigid today. Low 40's in the afternoon. Slept until 12 like I said earlier. Big D was supposed to have practice but that was a no go. At about 4:15 I was sitting/lounging on my couch reading/watching TV and suddenly my back started hurting really bad. Mainly between my shoulder blades along my spine. I had to pop/adjust it. It popped a LOT but still hurt and spread/radiated to my chest/breast bone area. Oh it hurt so bad. I turned over (on all fours) with my forearms braced against the arm of my couch and just rocked and moved my back. I picked up my phone trying to decide if I should call Big Daddy, text my neighbor or call EMS. Just as I was about to call Big Daddy, it quit. Not completely, when I pulled my shoulders back it still hurt and occasionally my chest would ache but it was weird. Scary too at first. It hurt so bad and I was the only adult here. Big D had gone with his cousin so it literally would have been dependent on whether I was able to use my phone in the event of an emergency. Even now I can still feel bits of it. My neighbor said it was probably just a deep radiating muscle spasm. The lingering reminds me of a particularly wicked charlie horse I had once while pregnant with either SDiva or DCourtly. I felt lingering pain for days after. It didn't feel like a muscle spasm though but that's why my neighbor said it was "deep". I don't know.

Around 5 I knew I was going to get a migraine. I had vision disturbances. That's one of my warning signs for both passing out and migraines though different. Passing out my tunnel vision is dark/grey. Migraines it kind of disappears like I have to turn my head to see. Or like today, I couldn't focus on anything directly in front of me. It was blurred. Took half the dose of OTC meds that I usually need (couldn't focus on the bottles to read the dosage). Finally I could see though the corner of my eyes felt tight. Head still hurt and I was nauseous. Tried sniffing my mint mouthwash (peppermint, the smell really helps) but that bottle is huge so I didn't do it long. Since I could see I took more meds. Finally it mostly went away. Less than 800 mg was enough that I wasn't actively in pain.

While I was still suffering though I made a leap. I wear a baltic amber necklace. JSmiley has one for teething, mine is for headaches and back pain. I took it off last night because I felt constricted and wrapped it around my ankle twice and just didn't put it back on my neck when I woke up. MAYBE it's coincidence but it's odd that the day I'm not wearing it where I need it, I have excruciating pain in those areas. Needless to say, it's back around my neck. I may order some more. Maybe one for SDiva, DCourtly and Big Daddy, maybe even Big D since he gets headaches too. SDiva and DCourtly aren't teething or currently migraine sufferers but they like how they look, and SDiva just started losing teeth with SEVERAL loose, DCourtly has a couple mildly loose but nothing definitive.

After all the pain I was still going to try to go to Big D's practice (which probably would've been a REALLY dumb move on my part) but he said his head hurt too. Even then, it got canceled LITERALLY last minute. One of the moms text me at 6:26 (practice was at 6:30) saying the middle school's team was using that field so our practice was canceled. Then the coach's wife text me at (again) LITERALLY 6:30. I'd have been super mad if I'd gone all the way there feeling like crap only to have to turn around. It took 30 minutes to go from my house to moms, Big D to get ready and go from moms to the field. It'd have taken 20-30 more to drop him off and get home.

I got Big Daddy to read another section out of the Dysautonomia handbook thing. He's going to read another tomorrow after work. If he doesn't work late maybe we can go for another walk. I need to sleep good tomorrow night because I can't nap or sleep after that till after the deprived sleep study. Blech.

Sunday, April 22, 2012

Exercise and Husbands

Thought I'd get a real blog in. Yesterday I felt AWFUL. Big D had a baseball practice. By the end I had a pretty short temper and a migraine on top of all the aches and pains. Came home and Big Daddy had mostly cleaned up, changed the bedding to wash the others, bathed the kids, clipped JSmiley's nails AND made me soup and sandwiches. I walked upstairs (he was putting sheets on when I got home) and asked "Who are you and what have you done with my husband?!"

We did get into another discussion about me not pushing myself, and "believe in yourself, believe you can best it." That's where I had to stop him. He heard what Dr. M said, how he can believe both is beyond me. "I heard what Dr. M said, I know it's not just going to go away and even the medicine might not help but you need to believe in yourself, believe you can best it." Haha. By the end of the discussion he agreed that he might be wrong (you think?), that he'd read some more, that he's not experiencing it so I'd know better than him how I feel (again, duh?!), etc. I felt much better last night than I have all week despite not physically feeling well.

Today wasn't that bad symptom wise. I was tired (slept bad, kept waking up thirsty, then woke up just before 7 wide awake but still tired). I wanted to take the kids to the park but it was rainy and yucky. Once it stopped raining we went for a 2 mile walk. I'll probably regret it tomorrow. I think I can feel it already. It's hard to describe. It was both easy and hard and I know I pushed myself. I didn't think I'd make it a mile, much less two but I did. We got to the track and I felt discouraged. My chest was a little tight and I had some pain. But I took it 1 lap at a time, counting laps I'd taken instead of laps left to my 2 mile goal. I briefly (insanely) considered 3 miles or even just 2.5 miles but my muscles felt like they were achy so I figured I'd already be in enough pain tomorrow.

The 2 miles isn't that odd. Remember on good days I can walk for an hour before getting dizzy. Coincidentally, it takes me exactly an hour to walk 2 miles (at my pace). I won't be able to do it daily. I've only done it twice so far but I want to do it as often as I physically feel up to it. I want to build a LITTLE of my former strength back up even if I can't get fully healthy. I believe it's important to do what I can because otherwise my body will weaken. I doubt I'll ever have muscles but I'd like to maintain my current strength plus a little extra. Running laps isn't in my future, jogging even 1 lap is looking impossible but for now I CAN walk 1 hour. I'm going to try to keep with it.

One of the team moms for Big D's team told me to let her know if I want company if I decide to go again. She's the coach's wife. I like her. Her youngest daughter and JSmiley have the same first name but spelled differently.

Ok JSmiley is fighting sleep and it's officially after midnight. And yes, I'm already feeling some discomfort from my walk (just the feeling like my arms need a break, tender legs and the ball of my foot etc. nothing bad yet). Time to try to get her (and me) to bed. I probably forgot something but there's always tomorrow. Or later today rather.

Saturday, April 21, 2012


I think I've come up with some names. I'm not totally solid but whatever. I have a name problem. I get all irritated with some names. Like J for instance, she has some nick names, a few based on her actual name and one of them irritated the crap out of me. It made me sad thinking up names for them because "I love their names and these aren't the same". I'm hormonal, don't mind me.

To make it easier (even though it looks kind of funny), their "names" include their initial. That way there's no "which one is that?" And because it's the only way I could force my brain to get over the fact that it's NOT their name. My brain is stubborn.

From now on, S is SDiva. It fits. She's very much my diva child. She's into clothes and shoes, make up (not allowed except rarely/play instances - she's 6!) and jewelry. She doesn't take regular pictures. She strikes dramatic poses. Hand on her hip, hip out, head tilted to the side with a mega watt smile. Her nana (my mom) never really got to do the whole frilly thing with me and LOVES that she can do it for the girls. They're all into clothes/shoes etc, but SDiva more so. Diva.

D is DCourtly. I struggled with this one. At first I picked Attitude but even though she has an attitude (they all do) it just didn't stick out. Then I thought up Haughty and again, it didn't feel right so I checked and found Courtly. I like it. Courtly means polite, elegant. But it's based on how people acted at court (royal court in olden times). DCourtly has an attitude, she can be haughty, but she also has this air of calm elegance. You can look at her and just imagine a regal child standing at court with her defiant chin jutted out, nose up turned, hand on her hip watching you. Courtly.

J is JSmiley. I had a bit of trouble with this one too. I always call her smiley but I was over thinking things. JSmiley is very much a happy baby. She rarely cried unless hungry. She's got a big smile for just about everyone. She's watchful and quieter, but very smiley. She can be energetic, quiet, entranced, etc but almost always will crack a smile.

It may seem silly but I couldn't call my babies some off the wall name like a cartoon character. (Ariel, Tink, Jasmin?) Sure I COULD but I can't. They love cartoons (even the baby) but it's just not them. And initials can get confusing. I don't talk about everyone but my MIL (mother in law for future reference) is R, my FIL (father in law) is R, my husband is R, one of my friends that has a son on my brothers baseball team is R. JSmiley is a J, a friend we see often is a J, another friend with a son on my brothers team is J. I'll stop there. I won't do nick names for everyone though. Just my relatives that would be easily tied to me.

Of course mom and dad are mom and dad. Though my dad lives a 12 hour drive away so maybe not so much on him. R is Big Daddy (I call him that in real life). My brother K, is Big D. Again, something he goes by in real life sometimes. Those are most of the people I'll mention. Maybe another blog shortly after this?

Wednesday, April 18, 2012

Crabby Pants

It's an icky day both health/life and weather. I'm in a little pain in various places. Headache. Some palps. Etc. Had a nightmare about locker combinations and a psycho female ghost. R is crabby. He read the Dysautonomia handbook (part of it) and was being a crab so I told him he must not have paid attention to it. He told me I needed to "prove the article wrong". What?! Would you go out of your way to try to prove the Honda handbook wrong? How does that even make sense? Would you go to someone who had cancer and tell them they need to prove their diagnosis wrong? I swear, sometimes...

4 months until my next appointment. I had to stop typing there and have a mini freak out. (Read: Anxiety attack.) Less than 4 months until I should wean. That is stressful beyond belief. I know I'm probably over-reacting but my anxiety is bad. I nursed S and D for 26 months each. J will be almost 14 months when I go back to Dr. M. That's a whole year less than the other two. It makes me sad. And guilty. Like I'm denying her something. I know it's a better choice, maybe I can get back to my normal (which is obviously different than healthy normal but normal for me). Someone mentioned pumping to build up a little supply. I might try that if I can. At least maybe then I can offer her a cup before bed.

R is still being a crab. Days like this, I don't know if we'll make it. I know something has to change. Me being sick is stressful, I get that, but it's stressful on me too. And him being a crab makes it worse. When we took our vows, we promised to be there in sickness and in health. Apparently that part was just words. If he can't help me when I'm down, I don't want him when I'm on my feet. For now I'm just going to play it by ear and hope he opens his eyes and quits being in denial. He thinks if he's hard on me I'll push myself and "realize I CAN do everything I say I can't" or that I'll realize it's all in my head. I know it's not but he refuses to see that. At least part of the time. He understands I get dizzy. In fact "hot and dizzy" to him equals bad news. He's not putting them together. Duh R, IF I do it your way, that's how I fast track STRAIGHT to hot and dizzy. I'm NOT pushing myself to do something, especially not alone, because I KNOW what will happen.

I don't get how that's hard to understand. Even our friend understands it better and texts me to check up on me. Of course her mom had something along the same lines but how is it she can understand (and several others have some basis for understanding) but my husband remains woefully ignorant, apparently by choice.

In other news, I think it's time to switch from initials. I'll make a key for anyone back reading. I just have to think of fitting names to use. R will be especially hard. If I let my emotions run away with me his new name will be Mr. Crabby. I'll post names and stuff in my next post!

Monday, April 16, 2012

Doctors and more confusion

I think I'm pretty much just going to scrap the HAWMC Challenge. I can't really relate to the prompts. Maybe I'll just pick and choose if I get bored later.

The appointment was both annoying and confusing (and perhaps pretty pointless). It WASN'T the doctor I assumed. Whoops. Oh well, that's a plus in my eyes, though I'm not sure exactly how much better he is. They did the whole blood pressure, heart rate thing. My heart rate was 99 and the nurse was like "You're heart rate is kind of high." Which is when I asked what it was and she asked "Is it normally *that high*". Ha. Ha. Funny. I wish it never got higher. I just kind of laughed and said that was my normal (feeling well) heart rate but was actually LOW for me when I'm symptomatic. THEY had the results of my sleep study, I didn't ask, I'll get to that in a few.

Dr. K listened to my heart, had me breath normal, deep then hold my breath (on the inhale and exhale), asked if I had chest pain or palpitations. The appointment was largely talking. He said he agreed with Dr. M's treatment plan and for me to follow up with Dr. M but that he didn't see the need for me to see both if they were in agreement on the plans, at least long term, unless I needed to. I asked questions, he said I have the neurocardiogenic syncope and inappropriate sinus tachycardia (which I knew), the mitral valve prolapse syndrome (also knew), but said I also have sick sinus syndrome?!? Basically my sinus nodule thing (??) is "set higher". The hearts natural pacemaker? I don't know.

My other problems listed are GERD (knew it), anxiety (knew), palpitations (knew), syncope (knew), arrhythmias (knew it), and the 2 murmurs (prolapsed valves - hence the MVPS and one other but I can't remember).

Here is where I get confused. My dx/problems list also included "obstructive sleep apnea". But the tech told me I had less than 5/hour so normal/very very mild. And now they want a different sleep study (deprived sleep EEG). So what gives? Guess that's a wait and see. I rescheduled the deprived sleep EEG for the 26th, I didn't get much sleep last night, I can't stay up today and tonight plus however long tomorrow on no caffeine and take care of kids. I need more than 4 hours of sleep in 46 hours (woke up at 10 yesterday, got 4 hours last night, then be up until the sleep lab at 8 which I've heard lasts about 2 hours so I'd be awake 48 hours at least with the exception of those 4 hours. Sure that fits the deprived sleep definition but I can't. I'd end up falling asleep tonight and having to reschedule anyways.

But the thing that stumps me the most was on my list of "chief complaints". Coronary Artery Disease (CAD). No one has mentioned that, diagnosed that, anything. Nothing. I don't understand. I do have chest pains occasionally but that's the only thing I can think of for that to show up on the CC list.

Anyway, I'm hungry and tired. More later.

Wednesday, April 11, 2012

Scheduling Mistakes

Not much new on the home front. I got my baltic amber necklace. I'm not sure how well it's working. I'm still getting head pain but nothing severe since I put it on. We'll see. I'm glad I didn't do for a small necklace, this one is fairly little on me. Well, at least in my eyes. But I can't wear turtle necks and some plain round neck t-shirts because I feel constricted so despite having a few inches, it still feels mildly constricting.

No news on the sleep study front but I am irritated at my cardiologist's office. TWICE I've told them not to put me down before 9 since I take S to school on my way and sometimes we run late because of her daddy needing to be dropped off. I SWEAR they changed my appointment twice. I've had to go into my cell phones calendar and change it twice. Last time I brushed it off thinking I'd entered it wrong (not unheard of, my electrophysiology appt is tentatively set in my phone as when I THINK it is) but I KNOW my (upcoming) cardiology appointment I SPECIFICALLY got for 9 so I wouldn't have to rush. Got the "reminder" voicemail, it now says 8:45. Again. I have no clue where my paper went but if I find it, I'm complaining. #1, I specifically said I couldn't do those times. #2, what if I hadn't checked my voicemail. I don't check my voicemail every time I get one. Firstly, it's usually someone I know personally so I just call them back. Second, where I have a messaging app on my phone, I don't get regular VM notifications. For a while I thought what I got was a spam text (because my POS phone spams me, love it). If I hadn't checked my vm (I had 5 from the past week+, that's how little I check it) I'd have shown up at or just before 9. "Late".

A friend of mine on fb said a clinic she goes to regularly does that "so people show up early". I try to always show up early. But now I'm going to be rushed and annoyed which HI, will increase my heart rate, blood pressure and dizziness. At the very least. Good job if you want me symptomatic, you'll succeed. My objective this week, FIND. THOSE. PAPERS. I'm mad. But it'll have to wait. D woke J up so now she's wrapped to my chest. I suppose I'll read/blog until I get a moment. Later.

HAWMC 9, 10 & 11

HAWMC Challenge Day 9, 10 & 11.

Keep calm and carry on, Letter to a 16 year old me and My theme song.

The Keep Calm one I can't do mobile. I may do that later.

Dear 16 Year Old Me,
There's a lot I could say to myself at 16. Self, you're not indestructible. Despite being rarely symptomatic, you're sick. Don't brush things off. And yes, you ARE sick. Don't let anyone tell you otherwise. It's taken us a while but at (almost) 23, we are finally starting to get some help and answers. Also, it's nothing like what Mamaw M had, calm down, don't panic (we both know you/I/we will when heart problems get mentioned). Breathe.

Also, life is tough, it's unfair. But you're strong. It takes us a while to realize it. I'm still embracing it. Sometimes you'll want to give up, to give in, to stop fighting. Don't. I suppose I can CC: 23+ year old me too. It's never ending advice. Keep the courage. Stay strong. You can do it, even if you think you can't.


Theme song? These prompts were difficult for me. Still are. Music may add to/affect my moods but how do I pick one theme song? Do I focus on my health? Upbeat and determined? Angsty and dark? Exasperated? Or me in general? There are just too many to pick. Especially since I'm still learning.

Sunday, April 8, 2012


HAWMC Challenge Day 8.

Best Conversation I Had This Week:

Since I don't get too many conversations about my health other than "Are you OK?" (like yesterday I was at the baseball field with K and J for 6.5 hours, R asked if I was OK or needed drinks since it was so hot), my best conversation was about crunchy/attachment parenting. I know most people who blog about health try to be limited in what the share about their kids but my blog is MOMMY with Dysautonomia.

Anyway. I'm more of what you would call a "crunchy" mom. I breastfeed/extended nurse, bed share, baby wear, non-cry-it-out (CIO), anti-circ, against abortion, I'd LOVE a water birth, if I ever have more it'll be pain med free. AND here soon, we'll be cloth diapering! There are others who are MORE crunchy (extended rear facing, non-vaccinating, all-green, etc). I catch some flack for it from people but I don't care. It makes me mad when it happens but they should know by now it never changes my mind. I'm lucky that R is pretty open minded about my views and agrees. I wanted to cloth diaper for a while but didn't have the necessary funds at the time. So I dropped it. 1 diaper can cost as much or more than a pack of "sposies" (disposable diapers). But after you have a suitable stash. No more buying diapers (unless you want more).

Anyway, R thought they were the plain diapers from before that needed the diaper pins. I showed him pictures and he agreed with me! So probably sometime this month I'll be ordering the supplies to cloth diaper!

Saturday, April 7, 2012

HAWMC #7 (My #1)

HAWMC Challenge Day 7. Today is writers choice and I chose to do a day I didn't complete since I just started today.

Why do I write about my health?

I guess I write for a few reasons. To keep track of stuff. Eventually maybe I'll be able to help others like me. There is so LITTLE information about neurocardiogenic syncope it's laughable. Only I'm not laughing. Maybe I'm not looking in the right place but if there are more than the handful I've found, someone point me in the right direction. It's not very informative now but maybe one day.

I also find writing cathartic. I don't write everything but writing helps. I can't do much but even with minor brain fog I can still write. I may ramble occasionally but it helps. I'm the type that brushes stuff under the rug until it comes bubbling out.

Maybe one day I'll even share this blog with my friends and family. Right now they know even less than me. Some by choice. Maybe one day they'll get it.

Feeling Blue

I haven't felt well lately. Nothing new there. I'm getting tired of fighting and especially of getting no where. I'm tired of feeling like no one cares. R told me yesterday "I care, I just don't show it." I fail to see how that helps me. I suffer alone. Sure he brings me food occasionally and helps with the big 2 and occasionally J but it's not enough. When I'm in pain I get no help except "take something" or "stop breastfeeding and get on your meds". When I'm depressed or anxious, I get nothing. When I need someone, he isn't there. It's been like that so I've pretty much stopped telling him a lot. I feel like I have no one fully. I suppose I should just take what I can get but it hurts. When I'm feeling down or anxious all I want is to be held. I want sympathy. I want understanding. Even if he can't do anything, just having warm strong arms wrapped around me and some sympathy and love would go a long way. My diagnosis is recent despite suffering for 13 years and maybe he is in denial. I don't know. I just wish he could understand. I may be grown up but I still need his help. And not just with the physical stuff that I can't do. I don't know what to do. He already feels like he does too much. I know I can't do this without his help but I need more. I just don't know.

It's a bad week. Bad everything. Depression and anxiety. Dizziness. Plain headaches. Migraines. Pain. Nausea. Stress. Just everything. What can I do.

Thursday, April 5, 2012

Unexplainable Pain

I'm not sure what is going on but I'm in so much pain it isn't even funny. I haven't done anything to be in pain. My head hurts, I'm nauseated, my lower back is hurting bad as well as both legs. Pretty much everything hurts to at least a minor degree but those are in constant pain. Has been almost all day. And I got dizzy earlier. The only thing I did was eat a bowl of cereal and drink milk. Had to lay down, pain started less than 2 hours after that.

I haven't taken anything because my only options are tylenol or ibuprofen (both the OTC kind) and those just don't feel like it'd help. But this pain and nausea is driving me crazy!

Wednesday, April 4, 2012

Sleep Study rambles

So I can go ahead and add sleep study to tests taken. It was scheduled for the 28th but I got a call yesterday saying they'd had a cancellation and did I want to go ahead and do it. I went ahead and agreed. Didn't think much past an initial hesitation and said yes. If I'd thought it out I'd have freaked out and if I waited till my scheduled appointment I'd have been a bundle of nerves. I was already panicky because I'd only had 3 hours of sleep and couldn't take a nap or have any caffeine. Granted I think I've only had 2 sodas so far this month (not counting the 5 sprites - those are "no caffeine"). To top it off, I got ill (yuck) and had to lay down after to settle my stomach. Torture!

I was also nervous because R had to work today and I was panicky thinking about J who still wakes up to nurse at night. But she did fine though she stayed up till 1. I woke up at one as well. Maybe our bodies knew.

Anyway, I got there and shown to a room which, in my opinion was somewhat better than a hotel room. Hotel beds are very hard (at least the ones I've tried). This one was soft, big enough for 2, and just comfy. It also had a desk and chair, plush leather seat that rocked, I didn't try it so I don't know if it reclined. And a TV. It had medical stuff too and a camera which was bothersome. I don't like attention. I layed on the bed watching tv while the other girl got hooked up. Then it was my turn. So. Many. Wires. I felt like a robot. Anyway. I tried laying on my back but that wasn't going to happen so I layed on my left side. I woke up a few times and about midway through, switched sides. I also woke up before he came to wake me up. Got unhooked and showered. He showed me my "activity". I did have some apnea spells but it was less than 5 per hour (for 10 seconds). I had some REM sleep so I AM getting SOME deep sleep but he said something about the 3rd stage and my brain being active a lot. I won't know anything else until the doctor reviews it. Or my appointment at the end of the month. But I figured I'd write it down. I've eaten, nursed J and my back hurts so I'm laying back down.

Tuesday, April 3, 2012

On staying positive and baby steps

Time sure flies sometimes. I can't believe it's spring break. I'm a little happier today, I got some fluffy mail yesterday (in parenting it means things like wraps for babywearing, cloth diapers etc). I finally have a pink wrap. I've got 2 blue (not the same hue) ring slings (one being a woven wrap conversion and another a linen one) plus a blue woven wrap. I didn't get an expensive wrap since we have other monetary needs but I HAD to have a pink one. I have 3 daughters and all blue wraps! Granted the only one I wear is J but still. Maybe I can get D to sit in a wrap or a rs. I have 2 more I want to buy for me (and I'm trying to convince R to let me get him a blue one like my pink one). The one I got was a gauze wrap. I love it. One of the others I want is pinkish purple and another is blue, I want to get the blue one and turn it into a mei tai. My woven wrap is kind of small on me so I can only do a few carries and they aren't very reinforced, the one I've got now, despite not being woven feels pretty darn secure but I want the other one too. And I realllllly want a wcmt. Custom slots are soo hard to score though, and it's so expensive! Maybe my Christmas present? I don't know.

Babywearing makes my life easier. J likes being held and after having miscarriages plus anxiety and everything else, I've probably spoiled her a little. She's definitely a mommy's girl. But even R has trouble carrying her long periods. Constant weight wears you out, but with babywearing, I can be hands free to do what I can/need to, and J is weightless even after 30-60 minutes. I can barely feel any strain.

And lets face it, people with Dysautonomia can get pretty weak/tired. Wrapping her up puts almost no strain on me if I've wrapped her right. And baby cuddles can cure almost any sadness, at least momentarily. I'm glad I had kids before I found out what I have. Sure I need help from R but my kids give me so much happiness even in the darkness I feel. It's easy to just waste away when you have no one rooting for you and cheering you on. My kids are my cheerleaders. Any time I want to give up and stop trying to get answers or want to just lay in bed for a year, I push myself harder for them. I can't chase them around, I can barely chase ME around, which is another reason I'm thankful for R. He's athletic and strong. He can shoulder it. He can get outside and play ball or tag while I watch from the sidelines. When I lag behind he can keep up with them with no difficulties. I wish I had the energy to chase them too but at least I have R to do what I can't.

I'm also glad I went ahead and had kids early because who knows if I'd have been able to have my ideal family later on. Would I even have a diagnosis? My last 2 OB/GYNs were the ones who sent me to the cardiologist. Sure I have syncope spells and palps and tachycardia NOT pregnant, but it's so much WORSE when I AM pregnant. It goes back to my normal after I deliver so who can say if I'd have ever found an answer. If not, by the time I did find someone to help, would I be much worse? If I did find an answer pre-kids, I'd have to stop the meds he plans to put me on. They can't be taken while pregnant or nursing. Who knows how that would've affected my decision on when to have kids or how many. Even now I don't feel DONE. Oh I'm most definitely done for NOW but only by necessity. If we had the room for 4 kids, if I felt like we could financially afford to add another, and if my health weren't an issue, I'd be ok adding another. But not just yet. I'm happy cuddling with J and baby fever is low. Just a minor pang as opposed to an all out ache. I don't know if we'll ever have another. I'd have to be off meds for a long time. It took me 12 and 13 months to conceive D and J (I conceived month 12 when trying to get pregnant with J but lost the babe). S was only 6 months of not trying. so roughly a year to get pregnant, 9 months carrying and 2 years nursing. I couldn't do that right now even if I did have room and finances to comfortably fit another child. My health is just too poor.

I just don't feel done. Not totally, at least not in the long run. But I AM content for now. Just like little J. I'll take baby steps. I'm focusing on them. And my health. S is already in school, D will be in pre-k soon, J still has a while. But that gives me time to get on the right track, at least try. And to enjoy them while they're little. In 4 years when J is old enough for pre-k, S will be 10. That's just mind boggling. In 4 years all my kids will be in school full time. Maybe I'll have energy then? At least a little. I'm not asking to run a marathon but maybe by then I won't have to spend 80-90% sitting without being dizzy.

I have to hope. And take baby steps.

Sunday, April 1, 2012

Lab work and confusion

So I'm not sure what's up with the last sentence of the previous post. I don't know if there were more words or if I just left off punctuation or if the post was too long or what. I don't remember. Oh well it appears complete. Mostly. From what I remember.

About 2.5 hours after I write it a killer migraine hit. 9:30 AM my time (remember I can't fix the time zone setting from my phone so it's off by 2 hours). Tried to sleep it off, kind of worked. Kind of being the key statement. I didn't get rid of it until about 4 AM the following day (yesterday) after I caved and took tylenol (I do not like taking meds, even tylenol) because the pain was horrible. And to make matters worse, J refuses to sleep. It's no fun suffering through a migraine and entertain an infant, let me tell you. Then by a combo of help from R and her finally sleeping, I slept over 11 hours. Still woke up tired. That's one reason I want the sleep study. No matter how much or how little I sleep, I either wake up tired or get tired again within a few hours. But ironically, I ALSO have insomnia so even if I'm tired, I just lay here.

Side note, got my blood work back yesterday. All normal. Not surprising. Dr. R irritated me a little with that. She asked how long this has been going on. I'm, since as far back as I can remember, I've had blood work since it started. If my blood work or systems were the cause that she were testing for and were normal then despite me having insomnia since a teen (at least), you'd think it'd have been abnormal then. She said my old results don't count. Sure it doesn't tell you what's happening NOW, but the problems didn't START now. It's on going. Of course she KIND OF intimidates me when she does that so I didn't think that, I just felt stupid. (See why she's not exactly my favorite....) Also, I pulled the paperwork I got out and I'm not sure why, but I know I said she wanted me back in 3 months? Either I didn't hear the receptionist correctly or she scheduled me wrong. See it was pretty confusing, I didn't know she was wanting a follow up (which may be a DUH moment but whatever). I talked to her and she said she'd schedule the sleep study and she wanted blood work. Sleep study paper handed to me along with check out paper. Got to the window, receptionist mentioned wanting me seen again and I THOUGHT she said 3 months. The date didn't register because she didn't mention the blood work and my mind strayed to that (she has a phlebotomist in office which I didn't know unlike my cardiologist but my cardiologist is in my main hospital so I was unsure what the mix up was and brought it up). Turns out, my sleep study is scheduled for a saturday, my follow up for the following monday. I have no clue why since everything I've read says it could take weeks to get the result back.

I'm also unsure of what will happen at my coming cardiology appointment. Dr. M is waiting till at least August to start me on meds (since I'm nursing) so unless Dr. K decides on more tests, what on earth can I expect? And if he doesn't voluntarily offer tests, what could I ask for. Or should I. I know I need to mention the 3 things Dr. T said he discussed but didn't (diet/weight/exercise/test result) but what else. If I didn't have that to discuss and got there for a "How is everything? Fine? Ok see you in 3 months." I'll explode. Seriously. My first ever cardiology appointment with him, I waited HOURS in the waiting room. Pfft. I got seen fairly quickly by Dr. T though so I don't know.