Friday, March 30, 2012

Catch Up - More doctor stuff too

It's been a few days. A lot of contributing factors, bad health, bad emotional health, busy, bored. All in one week. But I have blog fodder so hi again!

My girls are finally over their sickies thankfully. J had a little trouble fighting hers off though. I may bring it up in June at her 1 year appt. I've never had to do 2 courses of treatments for my kids before. S is now 6 and D will be 4 tomorrow! I'm glad it's spring finally, being stuck inside is a drag.

I finally gave in and went to see my primary doctor, Dr. R. She's ok overall but I have my reservations. Not anything grand, she's pretty good about giving me referrals that I ask for, I just can't appear vulnerable or Dr. Knows-It-All kicks in. This is why I feel it's important to RESEARCH until my eyes bleed (not literally). I've found that if you're at least partially knowledgeable, know what doctor you want referred to (and can make a case as to why and back it up) or what tests you want (same reasoning), unless you have an evil doctor, you stand a pretty good chance of getting what you request. I've had good luck getting referrals. It's only when I'm vulnerable or caught off guard that a doctor treats me as if I'm mistaken (except that one guy who yelled at me, I knew what it wasn't, he was just a jerk).

I caved and asked for a sleep study. I haven't seen Dr. R since I've gotten my NCS dx. It also helps to be taken seriously if you have at least one dx, even doctors who previously ignored your symptoms as normal will give you more credit. Unless they're jerks (some doctors are, no helping it). I still feel kind of uncomfortable around her. I think the only doctor I'm truly comfortable around a vast majority of the time is my OB/GYN, and that's probably because he treats me like an intelligent person instead of a chart to be dictated to. And it could possibly have something to do with the fact that it's kind of hard to be uneasy around someone who spent quite an extensive period of time working in or around your nether regions..... Or a combination. Anyway.

I almost chickened out. I was gung ho about the appointment when it was set but the night before I got really anxious and doubtful. That's common practice for me. If there is a delay and I have ample time to think on something. I. Freak. Out. Case(s) in point.
1. Sleep study referral appointment - Sounded like an excellent idea, had a friend talk me through my anxiety about it. Night before, started to second guess everything.
2. My appointment next month with Dr. K - I'm afraid he will brush me off like in 2008 (I'm still working under the assumption that it's the same man, I'll feel silly if it isn't, but I'm pretty sure I am right). Usually I get this way (the whoa is me, they'll never take me seriously) and I'm USUALLY pleasantly surprised when they do help. But he's the same guy (probably) who just brushed me off after ONE test. That I couldn't take. Well and the echo. I forgot that's when I had my first echo.
3. Dr. M in August - I'm not too afraid of that one but it's still 4 months away. I am afraid but it's still very "Out of sight, out of mind".

Dr. R also had her lab draw 2 vials of blood. One was for thyroid which I've had checked at least once probably more, but not recently (I believe it was checked in 2010 and was normal last I checked). And I think there was also a CBC. I go back in 3 months (presumably to review my sleep study results, I hope I get the blood results via phone or mail before that). Though surely if my labs are abnormal they'll call asap. I think I'll keep track of testing better. Too bad I can't think of all the dates of earlier tests. I want to get a copy of my medical records though. It feels like it'd be hard. I have a plethora of doctors here plus 2 hospital systems (and 3 hospitals that I've been to, if not more, there's too many to keep track). And that's just 1 of 3 states. I've been told my infant/toddler records aren't much help though so maybe it's better 1 of 2 states.

I REALLY want to compare my echocardiogram reports. 1st I got "normal/fine" 2nd I got "normal/fine" until I read the report they'd mailed to give to my OB and found out they meant 1 of 2 things (give or take). 1 being they thought it was caused by the increased blood volume due to my pregnancy with J (Dr. T told me that) which is why I had him repeat it after I had her or that they felt it wasn't an issue (as I've heard a million times in regards to my mitral valve prolapse/murmurs/tachycardia). That's not fine/normal. That's just not as troublesome. Stop mincing words. If I'm healthy, say normal. If I'm unhealthy but ok, say the test results showed areas that are "within acceptable parameters" or something. Don't have me think I jumped through that hoop for nothing only to back track with a "what we meant is" when I have to hunt you down for clarification as to why you told me one thing and the report I'm holding in my hand indicates something else.

Perhaps my biggest obstacle in being taken serious (other than my age and that blasted "But you look healthy") was the fact that the first 2 times, I was pregnant so they assumed that was the cause and it'd go back to normal. Thankfully Dr. T was a little more willing to listen (since I could tell him it didn't stop after pregnancy with D), when I saw Dr. K in 08 they never once bothered to get me back in or mentioned it possibly being pregnancy related or I'd have told them differently (side note to doctors, THIS is why it's important that you COMMUNICATE your thoughts/reasonings with us and not DICTATE to us). I honestly thought the testing I'd done and his findings (slim as they were with the 1 test I did, the 1 I couldn't and what history I had at that point) indicated the problem was else where. I also had no clue that my fainting and my tachycardia were even REMOTELY related. If it hadn't ramped up when I was pregnant with J, I might still not know it was connected. It's difficult when the first half is apparently just syncope then after S I had the palpitations start. Then when I got pregnant with D it was tachycardia, then it eased off (but not the syncope) only for it all to come crashing down in a daily fight while pregnant with J (which is why I laugh when I hear "it might get better with age". Does that history look like it's getting BETTER? But I digress, Dr. T said that it was pregnancy related, I informed him otherwise, he brushed me off but got me back in after J was 3 months old "to give my body/blood/hormones time to regulate". He honestly expected it to be gone. Hahahahaha. SURPRISE DOC!!!!! I was right. :/ I love it when I'm right. Kind of. It's not even that he thought I wasn't telling the truth, I had proof I had tachycardia. I have MULTIPLE ER visits from fainting. He just thought it wasn't related or bothersome. He didn't even bother telling me not to drive until February of this year (when he looked at the tilt table results) and I've been seeing him since February of LAST year. And I'm WORSE during pregnancy (hello doc obvious).

Spring has arrived and my schedule exploded. And of course, by that I mean, I went from doing nothing 7 days a week to maybe 1 thing a day, 2 counting doctors. And day 1 (Tuesday) kicked my rear! Sad thing is, it was basically nothing. S and D had dental appointments. 1 hour worth. Got dizzy if I tried standing up so I sat 90% of the appointment. (S has her 1st loose tooth, although it's not just 1, it's 6 - omg. D has 2 kind of loose teeth.) Came home. Took K to the ball field to practice with his old team (3 hours after the dentist so it wasn't back to back). Sat for 90% of 4 hours (1 of which was at my moms). The next day I spent in bed. Yesterday was my appointment at 2. Again ball field for 3 hours. Sitting. Sitting. Sitting. Today I don't want to get up.

Last night was bad emotionally. It's probably been leading up to it, this month

Tuesday, March 20, 2012

Rant and DIY ideas

It's 5 o'clock in the mornin', conversation got boring. I'm awake. S has school (which R will take care of that) but J has her 9 month appointment before 10. I have to wake R up before 6 so I can't go to sleep before then or deal with broken sleep. Couldn't sleep last night because R was too tired to be of any help and J fell asleep finally at 3. R wasn't much help at all yesterday. I'm pretty mad about it actually. I woke up at 2 and text him since he was having blood drawn. At 4 I was hungry and getting dizzy (I only had actual cook food here, stove top, oven etc) so I text him and told him I was hungry and dizzy. Apparently after having the blood drawn, instead of asking if I needed anything, checking up or me, or even telling me he was going somewhere, he went straight to his friends house to help him with something. He hadn't heard his phone. However, I called him before 4:45 to see why he wasn't answering. He told me then that he was helping his friend mow and all he had to do was weed-eat (the friend has a bad back and can't do it himself). So I told him he needed to check his text messages. Friend lives 20 minutes away. R didn't get home till 6. He finished weed-eating then buried friends cat who had apparently drowned in a neighbors pool. Then came home. I'm pretty livid actually. Especially considering I had J here with me as well as minor brother. Sure K (brother) could have called 911 if anything happened but then what? Are the paramedics going to take me, J AND K? (Side note, initials are hard to keep on track making sense. Maybe I'll change it to nick names and post a let/guide. Food for though.)

He knows he messed up. Question is, will he do it again. Sometimes it feels like I have to be in the middle of a full fledged syncopal episode right in front of his face before he takes me serious. He's usually helpful but it's like he's in denial about it or something. The other day friend had a lot of blood drawn and R drive him to his house "because he could get dizzy and I don't want him to wreck". Hi, I have a chronic condition that makes me dizzy VERY often, yet you still want ME to drive places with no other adult. I swear, as much help as he is, as much as I love him, SOMETIMES I could just SCREAM. I sometimes find it hard to believe he's the older one that doesn't have brain fog. He is a huge help but I highly doubt we're on the same page. /EndRant

Anyways, I've started looking for some DIY projects I can try and I've found a few. 2 are nursing necklaces. J is at the curious phase during nursing. She's all the time scratching (I swear even with clippings, this child is Wolverine!) Pinching, pulling, you get the idea. Anyway, nursing necklaces are a good, safe alternative for her to play with instead of trying to pull my lip off. Plus she can play with it while in the wrap or sling, or even just spending time curled up with me. I've got two in mind so far. I'm on the lookout for more. And any more DIY projects that are fairly easy, or easy to learn. Another thing I want to try is roven wool dyed dreads. Not in my actual hair, and I doubt I'd ever do real dreads. I don't like permanent or even semi so I'll follow option c first. A - real dreads, B - roven dreads braided into my real hair which is the semi option since all you have to do is remove them instead of cut it like real ones, and C - attach the falls to my pony tail. If I like how the look I MAY try option B. No promises. I also want to learn to sew and crochet. But the others come first.

Any other ideas?

Monday, March 19, 2012

Rambling Thoughts

This is one reason I hate getting sick. It always throws me off on my sleep schedule. It's almost 3:30 AM and I'm awake, with tingly hand and foot. For some reason it happens more on my left side, though some times both. Side note, apparently my phone wants me to get back into yoga. Swype turned though into yogi.

Still trying to do more research but not getting anywhere. I don't feel like waiting 28 days for my cardiology appointment. And I'm starting to get nervous. If I'm not mistaken, Dr. K (who I will be seeing since Dr. T moved) is the same doctor I saw in 2008. The one who did ONE test, proclaimed me healthy and never bothered to help. In fact, the reason I was proclaimed healthy is because I couldn't DO the test, which I told the nurse when she called with "All clear", she said she'd talk to him and that was the very last thing I heard from that office until my OB with J sent me. It was my OB with D that sent me the first time (I changed practices because HE moved to the same place Dr. T did). Granted now I have a diagnosis but still. I'm afraid he'll be difficult. Dr. T was frustrating, Dr. K (if he is the same guy) was just blah. I'm nervous and anxious and feeling slightly off but for most of the day I felt normal (for me). My friend came over again and hung out. I apologized for being wonky yesterday and she assured me she understood that I was just having a bad health day. Gotta love those who are understanding, right?!

I feel like I don't have much to write about, I usually just ramble till my mind is blank, post then that's it. Being sick but well enough to function at a reduced level is a little weird. I read others who have all these diagnosis' and are way sicker than I am, and I feel like a fraud. I guess being told it's in my head for so long or my doing etc is kind of hard to shake. Sure I'm sick. I've known that for a while. Sure sometimes I thought I was mostly healthy and couldn't figure out why I was so lazy (again, tell someone something enough and they're apt to believe it, and I've heard it a lot). Except passing out which I did a few times a year. I'd already had a kid and was married before the heart symptoms made themselves known. But I feel like I really have nothing interesting to leave here. Just my ramblings. No surveys since I can't really find actual surveys on my condition and how it affects me and mine. No pertinent information since I can barely find more than 1 page of the same info repeated over and over on not even a handful of sites. Sure I could write about Dysautonomia but I want to read, learn and inform about my specific TYPE. Not just the overall condition, MINE. And not others that have more info. I don't even know if there IS more info on mine. Surely if there was, I'd find it.

I'm not even sure what all of it means. Reading the info (all 1 page on my condition) has me feeling like the NCS just covers fainting. I mean it IS neurocardiogenic SYNCOPE. But what about when I'm not fainting. Sure it covers pre-syncope and stuff like that but is it a broad cover for my health or just a tiny sliver of the health pie. I thought POTS might be a viable option, still a maybe, but I don't know, I'm brought back to the whole "You're sick, REALLY sick, but you're not THAT sick...yet" mind set. And I know I'm getting worse, before, one day off and of bad sleep would've NEVER had me feeling that loopy. Before I could've gone THREE days on almost literally ZERO sleep and wouldn't be space case zombie until the 3rd. I know my health is deteriorating but I'm still kind of functional, right? Or am I kidding myself. I can go with R to friends house if I'm feeling ok, I mean, I'll be sitting down either place. I can cook as long as I don't have to be constantly standing over the stove, and I can sit down on a stool for prep work, I can take my brother to his games (as long as I have some place to sit). Or is it just that I know my limitations so it's easier for me despite being sick. I know I'm sick but how sick? Remember, I've never been FULLY normal. On a scale of 1-10, where am I? 1 being completely dependent and bed ridden, 10 being athletic/active completely healthy. My activity level is wake up, move to couch, not get up unless I have to. Or I chose to (like the above mentioned games, which I haven't done since probably August or September since it's been off season). I get up if I have to like kids stuff or mother nature or if I can't bug R for help getting me food/drink. Other than that, I'm on a couch reclined or laying down. Sitting up usually only to eat, get an energy burst or rare moments where I feel pretty good. But I'm "up" without meds. At least for now/most of the time. Even on days like yesterday when I'd prefer to be in bed, I was "up", albeit space case but up. Later.

Sunday, March 18, 2012


Today is MUCH better. Went to sleep at 2 (as opposed to 5-8) and slept till 11. It's 1 now. Brain fog is gone overall, as are the more severe issues of yesterday. Still symptomatic but I'm at normal (normal for me at least) function level. Another thing added on to yesterday (now that I can actually remember to write it) on the noise sensitivity, yesterday before my friend came over I was upstairs* laying down, but I'd turned my phone up so I'd hear if she called/text or if R called (he and the kids were out). I would've just gone to sleep but B was coming over and I needed some adult company. If only I'd had more sleep. Anyway, I'd dozed off for a few minutes when my friend text me. My text alert tone isn't loud, just 3 short lowish notes (like Do do DO - if that makes any sense) but it jolted me awake and my heart was racing and my anxiety was up for a minute or so. I suddenly remembered why I always have my phone on vibrate rather than turned up unless it's important. R is always fussing if I miss a call to turn it up. Now he knows why I don't (I called him and told him about it).

My friend and I just hung out, watched a movie and talked. Of course I had brain fog, extreme fatigue, cognitive impairment etc so it was like talking to someone who'd had 1 too many to remain functional. I don't take any drugs at all before you ask. Not even tylenol or cold meds unless whatever I'm taking it for is debilitating. I dislike taking drugs of any kind. And believe me, she noticed, we talked about it and she said she could tell. She's very understanding, some of her family have a genetic condition that's very bad as the disease progresses and she's not been tested but she understands what I'm going through since at least/more than half her paternal relatives has it. It was great talking to someone who gets it even if they don't really understand my illness. It really helped, even if I was less than functional.

* Stairs are particularly hard on me, I suppose they're pretty hard on most people with Dysautonomia, just a guess though. It makes everything bad. If I'm having a bad day it's like I ran a marathon just climbing them slowly, and forget going up then down and forgetting something and having to do it again. That's exhausting even on a "good" day.

Bad Day

Today was a pretty bad day. I finally got to sleep at 5 AM and one of R's co-workers called a little after 8 and apparently I have some kind of noise sensitivity. It wakes me up more often than not. So I've been up since then and it's midnight. I'm BEAT. I've been operating on very, VERY little steam. My symptom list is as long as my arm and I've had more soda in 24 hours than I've been having in days just to be semi coherent and lucid. I honestly felt like I was on drugs. One of my friends came by for a few hours and it was VERY noticeable. I really hope J sleeps tonight because I can NOT stay up all night tonight. I'm so tired. I'll be back later, when I can stay on track and think for more than 3 minutes at a time.

Friday, March 16, 2012

Feeling Blue

I'm feeling a little blue right now. I feel like I have very little support at all, at least on the home front. Don't get me wrong, my friends and family aren't bad or necessarily negligent, it's just that they know next to nothing about my condition. They don't understand, hell *I* barely understand. But I feel like I can't get them to even close to my level of understanding. I feel demonized. I feel like I'm better off talking to a brick wall. I have difficulties doing even the most mundane tasks and no one attributes it to my condition. I can't clean like normal people. 5 minutes of bending to pick stuff up and I'll need to lay down. For a while I tried sitting in the floor and cleaning areas and then scooting to another, lather, rinse, repeat. It takes ages that way. Mainly because I don't like "straightening", it needs to be just right. I can't do it all. I can barely do "it" at all. I do alright as long as I don't have to stand for long periods or bend repeatedly but it's hard. I need help doing it and that frustrates my husband. He feels I'm just being lazy and that my condition isn't that bad. See what I mean, he doesn't get it. He says, "You're a stay at home mom, this is your job". "How about I stay home and you go get a job, then I'll clean it all". Nice idea, in theory. Only I can't. But he doesn't understand that. I'll admit by broad definition, I am lazy. But not just for the sake of being lazy. I'm lazy because the activity required to not be labeled as lazy would wear me out, if I could even do it without passing out or falling over with weakness. Then he asks how I'm able to read or get on the internet on my cell phone or watch movies. I'm not sure if you can find what they have in common so if not, allow me. None of those activities requires me to be active. Paper books, I'm merely flipping pages, eBooks I'm just scrolling with a thumb, same with my phone. And I can do all of the above while laying down or reclining.

He's not bad, he's just frustrated and doesn't understand. He helps with just about everything. I honestly don't know what I'd do without him. I feel bad, like I'm dragging him through the mud but I'm not trying to. He does SO much for me. He cleans (like actual cleaning) since I can only straighten up, he cooks for me and brings it to me, he helps out tremendously with the kids, especially the older two since they're more rambunctious. Plus he works a hot, hard, long job. He has no normal set hours since he's a laborer, it's not uncommon for him to be gone from 6 AM to 10 PM one day then 8A-3P the next. And he works with asphalt. He does a lot more than I have any right to expect, and I love him for it. I just wish he'd understand that I'm not like this because I WANT to be. I don't want to be bedridden or couch-ridden or to have migraines and weakness, dizziness and fainting. I don't want to be so weak I can't chase my kids around outside and tumble and play with them with gusto. I don't LIKE having to rely on other people.

I just wish I could show people. Be disappointed in my actions or lack thereof (as other people have said), judge me for what you think you know. But you're wrong. Getting out and being active might help a tiny bit, but it won't help enough to satisfy you (general you). I want to weep when I think about it. I've dealt with this for over 13 years. I was around 9 when I remember the first incident, possibly 10, but who knows how early it really started. I've been punished as a kid for laziness, I've been ridiculed as a teen, teased and sneered at as an adult. And by reading the info, it makes sense. I don't know what normal is. Not in any mature fashion of the word. I've never been normal. I've been passing out since I was 10. Who knows how I'd feel if I were normal. So I can't tell you what I'd be capable of. But I assure you, if I had the energy to be Super Woman, I would be. Any bursts of energy you see, are miraculous, and pitifully short lived.

And Dr. M already said, even if I was taking medication, it won't cure it. It won't fix me. It's just there to help. I don't know how much it'd help. I want to try it but I'm already depressed and anxious enough without adding nursing guilt on top of it. I just feel so alone sometimes. I have no one who really gets it. I can't even find much online. I only have one diagnosis that explains things so far and that's NCS, and I can find next to nothing online. Sure I've found several Dysautonomia blogs and sites but most are predominantly about POTS, which I have not been diagnosed with. I don't know what else IS wrong with me so I'm stuck just trying to find as much on NCS and then just following the POTS train. Which is very informative (even if not widely known). I've found a bunch of sites and blogs with very helpful information about Dysautonomia in general but I feel like a fraud when most everything is geared towards POTS. I feel like I have a sign taped to my virtual back in big bold neon letters screaming "I DON'T BELONG." I don't want to feel alone.

Brief Medical Run Down

Again, it's after midnight and I'm still on the internet. Reading blogs, or at least finding blogs for later reading. It's slow coming. I don't know a whole lot about my condition or any of the others in this category or what else I may or may not have. I've been diagnosed with a few things, most under the "completely harmless" heading that requires no care. One that they want to medicate etc. But to be honest, I feel like I'm floundering in a sea of the unknown. I don't like it. Usually I research the hell out of something but I haven't had much luck. I've found a little bit, but not as much as I'd like. Type in pregnancy or cancer or anything like that and you'll find hundreds of web pages, books, specialists. NCS, I've only found a few. And the info on those pages aren't as extensive. Not to mention my diagnosis list is incomplete. I've not gotten complete up to date diagnosis' on stuff I know I have simply because of bad history with doctors, bad experience with meds, not wanting to take certain meds etc.

I know I have NCS, I'm seeing a cardiologist and an electrophysiologist for it. My primary doctor would have referred me to a neurologist but I got the NCS diagnosis first. Through my second (of 3 so far) echocardiograms they found out I have a mitral valve prolapse (which isn't that pesky all things considering. One of my other valves is faulty as well but less than the other. I think my cardiologist referred to them as murmurs. It's been a while so I'm pretty fuzzy on that one. I also have inappropriate sinus tachycardia. Lately it's been close to normal with my baseline in the 80s and 90s but it's easy to get it up in the 130s and even higher. Stupid easy really. When I was pregnant with J my baseline while sleeping was 115. Though my cardiologist (well, former since he moved) said it's perfectly ok for my age. Apparently if you take the number 220 and subtract your age, your heart rate can "safely" be any number below that, so according to that, 220-22=198. I'm not sure how accurate that is long term but it's true enough short term. 6 minutes into my stress test and my heart rate was 190 and then I got out of breath. Well, less than 6 minutes but the nurse asked if I could continue since the segment was almost over. I also have infrequent heart palpitations, less often than passing out but I have them. The first time I had one was 2007, Superbowl Sunday. I was laying on my couch online while R watched the game. We only had S at the time. I went to the ER and got yelled at by the doctor. He tried to tell me it was anxiety (which I'll get to in a sec) and when I told him I knew what anxiety felt like and I was sedately laying on my couch under no stress, there was nothing to cause an anxiety attack, he yelled at me. I've never been so enraged at a doctors ignorance. If you don't know the cause fine, don't discredit me because I'm young. Or whatever reason you chose to discredit me. I'll respect you more if you own up to not knowing what's up. Even if you suspect it's anxiety try this, "I think you're suffering from an anxiety attack." If I protest, a simple "It's possible it's something else but without further information I'm afraid I can't help you." My primary doctor thought anxiety was the root of some things too. I know differently. I had my first anxiety attack before my 10th birthday. I had several full on attacks while I lived at the beach and it was diagnosed there. I was in therapy and on an anti-anxiety medication for a while but it made me feel lifeless. I wasn't anxious but I wasn't anything. No emotion. I also know how I feel when the anxiety is minor, or different. So don't tell me you know better than me when I've lived with anxiety and I tell you this isn't it. I have migraines, several times a week/month. I have muscle aches, mostly my neck and back but others as well. (It's also been suspected that I might have PCOS or endometriosis or both but never confirmed and we're not on that part of my anatomy.) There's more but I can't think of everything right now. I can't stand for long periods. I can walk ok for a bit but standing is a chore. Cooking actual meals I often have to sit down. If I stand for long periods of time I get week, flushed and dizzy.

Anyway, I'll probably think of more later but J is yelling for me. Tata for now.

Thursday, March 15, 2012

Sick and tired of being sick and tired, seriously

Up again, and it's after 2 AM. J hasn't slept at night in about/over a week. She'll fall asleep near 5/5:30 then I have to wake R up. I don't know what time it'll show as posted, I can't change my time zone on blogger from my phone. It'll have to wait along with the rest of my tinkering.

"Yesterday" (since it's after midnight here) was a pretty icky day all around. The main things were shortness of breath, pressure in my chest and anxiety. Just to name a few. I'm documenting like I said, and hopefully beginning next week, I'll begin regular exercising. Other than that, nothing much to report.

On a different note, I took my bigger 2 daughters to the doctor. They have coughs too though not as bad as J. Over the course of them being sick they've varied in intensity but they didn't require steroids or breathing treatments. S is almost over the worst of it but it's slow coming. She just got antibiotics. D has the worst of the two including sore throat and a left ear infection, she got antibiotics and ear drops. So that's antibiotics x3, ear drops x2, steroids x1, breathing treatments x1. I hate having to give them tons of meds, especially baby J since she's on so much. And steroids are just awful. She gets antsy and spacey. It's pitiful. I hate my babies being sick more than I hate being sick, and I'll tell you, I whine like a baby when I'm sick, even of it's just written or to myself. Anyway, I'm too tired to think of more. Bye for now.

Tuesday, March 13, 2012

Cold Season, sick family, and random musings

Tis the season of illness. I really hate this time of the year. If I "dress warm" I over heat so I pretty much fluctuate, dress warm, overheat, don't dress warm, freeze. Fun right? Then to top it off, I get bronchitis and/or a sinus infection at least twice a year. Granted it's not as bad since I quit smoking for the final time. I quit during pregnancy and for months after, I'm not picking that habit up again. It's easy to quit, I quit cold turkey. It's not picking it back up 1+ years later, which is stupid backwards.

I think J had it worse of the 3 kids. She can't take any OTC meds so she was miserable all weekend. I took her to the pedi today, I wanted to take her to the ER last night but R said he felt we should just watch her over night. He doesn't ever feel like going to the doctor or ER at night. I'm quite a bit ticked off (I'm not supposed to be driving but next time, I believe I'll be risking it). She has bronchitis and a left ear infection. Her pulse ox was 94% while she was up and not actively coughing much. I'd hate to think of it being lower at night. She had a breathing treatment in the pediatrician and we got one to bring home. She's not too happy with it. The machine is pretty cute, it's a penguin. The carrying case looks like an igloo. I feel so bad for her. But she also got antibiotics (which didn't do too much good last time obviously), ear drops, and steroids as well as the nebulizer. I just gave her another treatment and she fell asleep halfway through it. It's like a miracle. She's been asleep since just before 8 and she's barely coughed at all, if any.

S and D felt pretty bad too but not as bad as J or me. But as bigger kids and an adult, we can take OTC meds to help alleviate our symptoms. At one point I thought we'd all need treatment. I had severe body aches, fever, cough, I even lost my voice in one night and took 2 days to get it back. I'm just glad it doesn't last weeks on end like pre-quitting smoking. It was a bit weird, I'm usually symptomatic, sometimes fairly mild, sometimes it's like a train wreck, but when I'm sick and/or on meds it's kind of hard to tell how much is the NCS, how much is the cold, how much is the cold meds. I guess it's better to over document. Though that's kind of difficult. Some days I'm symptomatic but to the level I've grown used to (kind of have to since it's been going on for 13+ years) that it's easy to overlook if I'm not focusing so I'll forget to document. I wind up just documenting BAD BAD days and completely forgetting minor or less severe days. I really need to work on documenting better for my doctor appointments. I also need to get back into exercising, at least to the best of my ability. I can walk close to 2 miles around the track on a so/so day before I get dizzy, though when it hits, it really hits. I can do an hour of yoga without difficulty except I need to work on increasing flexibility to better myself in the poses. I can even do an hour of zumba though only on a good day. It tires me out for a few days, and the walking, my muscles ached for a week. I need help that I'm just not getting with my husband. I can't drive to the track, walk it and drive back, it's a syncope risk but he only went with me once then it became "Later" or "Tomorrow". Yoga is easier to accomplish but I'm so far from flexible it isn't even funny. And as I said before, zumba is strictly an "I feel great" activity. I've tried other work outs, I know I can do walking and yoga, even by myself. I just don't want to risk passing out alone, especially while driving. Passing out in public is embarrassing enough without adding danger to it. I'll figure it out. I really need to, for my health. I really like yoga. It's relaxing and calming, which is excellent for me. It won't raise my heart rate (I also have inappropriate sinus tachycardia, mitral valve prolapse, murmurs etc - that I know of, hopefully I'll find out more at my next appointment(s)) which happens if I stand up, walk up even the smallest incline, go from laying to sitting to standing fast, walk up a hill, bend down to pick stuff up repeatedly (cleaning stuff off floors is difficult and time consuming, I have to sit down to avoid getting very dizzy), you get the picture. So yoga and walking are pretty much perfect for me right?

Back to the need to document, Dr. M said the NCS didn't cover all my symptoms, I'm pretty sure I have other conditions just not diagnosed yet. Maybe POTS (postural orthostatic tachycardia syndrome). I have a lot of the same symptoms. MANY. I'll have to bring it up next month (and maybe again in August). One of the symptoms is postprandial hypotension. See in order to stay off meds for now I'm supposed to increase salt/sodium. An increase in salt (more than just a little shake or the salt shaker or a high sodium, fast food meal) can make me feel a bit better however, frequently, after a meal, I get dizzy and need to lay down. Which postprandial hypotension is a drop in blood pressure after eating. It sounds like what I'm experiencing. But I haven't been keeping track. I feel like I'd always be documenting. Good thing I have a smart phone I guess. But no excuses! I want help, I want to be better, I want to give as accurate a description of what I go through to help my doctor help me, so that's my goal. No slacking! Bye for now.


The Fabled First Entry

These things are usually pretty hard to start. How do you just begin. I guess like this. I'll go ahead and apologize ahead of time. Mainly because I'm on my phone so the formatting may very well be off, and also because auto correct is evil and likes to make me look somewhat illiterate. It's also hard to go back and fix it if I catch it later. But anyway, here goes...

My name is Sierra, I couldn't think of any cute or clever names or titles so I'm sticking with the basics. I'm currently 22 years old, though I'll be 23 in May. I have a husband, R. We've been together since December 2004, married since July 06. We have 3 daughters, S is turning 6 this month and is in Kindergarten, D is turning 4 this month and will likely start pre-k this August. Baby J was born in June and is currently 9 months old.

I have Neurocardiogenic Syncope though from my understanding, that's not all encompassing, it's just the reason I pass out. I've been symptomatic at least over half my life, if not all of it, and only recently have I begun to find out why. The first time I passed out I was 10. I remember most of my episodes, though not always right away. I'm currently seeing a cardiologist and an electrophysiologist. I had what's called a "tilt table test" in November of last year (just a few months ago) and that's when they discovered I had NCS. I've seen many doctors over the last 13 years. A few ERs in a couple different cities in a couple different states. I've had EKGs and ECGs, echocardiograms, blood tests, holter monitors, event monitors, etc. I've been told my symptoms are anxiety, that I'm healthy. It's only the minority that thought that, but enough to frustrate me. I'm ecstatic that I finally have a diagnosis. That I'm finally on the right path.

I saw my doctors in February. Dr. T (my now former cardiologist) didn't really tell me much and moved to GA so now I'm seeing a different one. I can't remember his name right off but I think I saw him in 2008. Dr. M (my electrophysiologist) is the one who gave me the NCS diagnosis. He's also the one who said NCS is probably not my only problem. He was going to put me on 2 medicines right then and there but I'm still nursing J. For right now I'm just reducing caffeine, increasing fluids and upping my salt/sodium intake. If I quit nursing or get worse I need to call for the meds but I go back in August to be reevaluated. J will be 14 months, though I usually nurse until 26 months. I at least want to make it to 12. I feel bad for cheating her out of that when her sisters all got the full 26 months. I just don't know.

Anyway, basically I started this blog for myself, for my kids, and maybe for others. I don't expect to get any replies. I'm in uncharted waters with all of this, this diagnosis thing. For so long I've just been sick, several people didn't believe it went beyond the fainting, which I do fairly often, now they're learning differently. I'll admit to being a but bitter about it, but that's another post for another time. Bye for now. Sierra