Thursday, May 24, 2012

Growing babies

SDiva is officially a 1st grader. She got her kindergarten "diploma" certificate today. She also made all S's and her reading has gone up 150+ points since her first assessment. The scale is 0-900. Her first assessment was mid-high 500's, now it's 700's. It's "transitional" but she couldn't even spell her name at the beginning. She just wasn't interested in how I tried to teach her, and believe me, I tried everything I could think of. I'm a big reader so I'm just tickled.

I can't believe my baby will be in 1st grade. And DCourtly will probably be in pre-k. I'm so... Emotional. JSmiley is turning 1 on top of the rest. My babies are growing up so fast. More later, I'd rather bask in the mom glow than dwell on my health right now.


I'm irked. Not at anyone but the situation in general. My phone, even when the volume is on 1, startles me and makes my heart race (unless I'm expecting it or already active) so it's usually on vibrate. Today JSmiley and I took a nap and Dr. S's (neurology) receptionist called to say they'd been told to call me if they had a cancellation (news to me) and to call their main number and an extension to call back. Only I didn't wake up until like 20 minutes later. However, she called at 5:22, the office closes at 5. I called both the number she called from and the number she gave. No answer. The opening is for tomorrow afternoon. Looks like I'll be calling in the morning and hoping it's still available.

Like I said, I don't mind she called after hours. Most of my doctors offices call at lunch or after official business hours. It is partially my fault, my phone could've been up or I could've been awake. I'm just irked that I missed the call and MAYBE the appointment. I'm going to start calling at 9 (when they officially open).

I also wonder why they were told to call if they had a cancellation. I know doctors offices get cancellations but I'm not usually placed on that list. I'm not used to this treatment. First the "ASAP" appointment for the electrophysiologist, getting referrals and tests without having to fight, and now being placed on the cancellations call list automatically. And by automatically I mean *I* didn't request it so one of the doctors had to have. I got called with a cancellation on my sleep study too a few weeks early. Surely there were tons of others ahead of me. Lord knows I'm not complaining, I'm just not used to it. I like it but they usually call that day or the day before so it's kind of rushed but as impatient as I am, I'm not going to complain about getting seen 2-3 weeks earlier than my scheduled appointments.

I just really hope it's still available in the morning. More later.

What Happened To The Time

I can't believe I haven't written in 4 days. I haven't done much of anything. I didn't even update my dysautonomia tracker. I was reading the 50 Shades trilogy but seriously? I felt like that's all I did. Even though it's not. I liked the books, the ending was a bit abrupt and I could clearly make out the connection between Twilight and 50 Shades (since it started out as a Twilight Fanfiction) but I liked it. I also took Big D to his game and another (that got rescheduled due to rain) so I got out and did stuff. I just don't know why I feel like those 3 days were spent in a black hole.

Today may be a bad day by the end health wise. SDiva's award ceremony is at 9 (it's her last year of Kindergarten!!), then I have something else at 10 that I may reschedule. Plus Big D has practice 30 minutes away. At a field I'm not totally comfortable with it's location so I'm following my friend there and out (I've only ever driven with someone or followed someone and I'd get lost, I'm not originally from here and due to dysautonomia, unless there isn't another choice, I prefer to let others drive). I really dislike that field too. I just want to stay in bed. Except SDiva's school thing. If Big D's practice was closer I wouldn't mind but I'm wanting to ask someone else to take him and I feel like crap doing that. I just feel so run down. And I'm not trying to complain, I just really feel blah.

My birthday is tomorrow too. Another year older (23). It's sad, 23 and I feel this wore out and run down. I think Big Daddy was thinking about taking me out to eat if I feel up to it. JSmiley turns 1 in 13 days too. (We're both Gemin.)

The girls love Callie, JSmiley only half of the time though. I swear that kitten is worse than a newborn. Plus side, she uses a litter box so I don't have to train her. Anyway, I went to sleep before 11 last night (see even my insomnia couldn't keep me up), woke up at 12 to nurse, and 4 for seemingly no reason so it's 6:37 now, I'm going to try to snooze until 8. Later!

Sunday, May 20, 2012

Meet Callie!

Look what Big Daddy surprised me with!! I asked for a kitten and got one! Picture sucks quality wise but she's sitting on top of me so it's a "self portrait" minus me, in dim-ish light.

JSmiley keeps trying to touch her with her foot. (We're still in bed.)

Meet Callie

Edited for multiple auto correct fails :/ and to add a picture.

Saturday, May 19, 2012

Good Day

Took longer to recover than I thought. I'm guessing that was partly hormonal though. I've come to a decision. I AM going to start pumping and hopefully over the next 2+ months build up at least a little supply/stash that way I can at least ease my guilt a little. I may not be able to nurse past August and I may not be able to nurse her until 26 months like I'd like but I will give her as much milk as I possibly can. :)

I also downloaded a white noise app on my android called relax and sleep. I've come up with a combination I like. Drum melody, then relaxation melody, summer rain and thunder claps. None of them are even close to half of the volume bar. I'd say the loudest (drum melody) isn't even 1/4 and the others decrease a little from it each step. But its really soothing and enjoyable. I have fallen asleep to it twice. I haven't tried while fully alert, just already tired but it's a little easy to redirect my over active brain to the sounds. I feel like I could use it in yoga or maybe meditation. I love my little mixture of sounds.

I've gotten back into charting/tracking my stuff. I tracked it for 2 weeks and quit for a month. Cell reception sucks here and it takes forever, plus some of the drop down boxes don't work on my cell phone for some reason (for symptoms etc). But I plan on printing what I have and taking it to the neuro, Dr. S (did I mention Dr. S is a woman? I hope I like her, for some reason I'm usually more comfortable with male doctors). I've had 3 migraines this week alone, and that's not including the minor headaches that didn't develop into a full blown migraine. I have a headache now, waiting to see if it develops further. Only 17 days left until my appointment.

Today has been a pretty good day for me over all. I feel ok despite my slightly achy head. I'm being proactive on a lot of stuff and no negatives yet. Here's hoping for more good days in the future!

Thursday, May 17, 2012


I just read a really disturbing news article about azithromycin on Yahoo. Apparently Vanderbilt has discovered some antibiotics have an increased risk of sudden death if heart patients take them and azithromycin (zithromax) may be one of them. I've taken azithromycin SEVERAL times for twice yearly bronchitis/walking pneumonia/sinus infections. I've given JSmiley azithromycin (liquid). I'm going to have to figure out a way to follow this and ask Dr. M. I'm seriously disturbed right now.

Wednesday, May 16, 2012

Not Enough Spoons

Yesterday was just bad. I wrote previously about fluctuations. Below is a picture of what I mean. That wasn't 24 hours difference, that isn't several days. That was THREE hours. Yes there are variables but still.

The main differences are noted. One I was sitting, one I was laying and the time. I've never actually seen my blood pressure that high. I see it that low often though. I know it was that high because I was active yesterday. Most people wouldn't think twice about 1 day of being active (out of 3). Saturday we went shopping. Sunday I went to my moms for an hour and layed on her bed with her watching Anaconda (with no children in tow). Monday was mainly sitting/laying in bed. Didn't go anywhere. Yesterday I was already kind of feeling off but got dressed and to the dentist in 15 minutes (small city). Sat there. I only had DCourtly with me, my friend kept JSmiley while I went. Drove home and got JSmiley (friend lives next door) walked up stairs and had to go back and get the pacy. That was 2. Laid down until 4:15, got ready and ate something quick. Took Big D to buy baseball socks because he had a game and lost one. Big Daddy had the girls. Then took Big D to his house so he could change into his baseball gear, then the gas station. Big D paid so that cut down on walking. Then drove to the ball field. All together that trip (one way) was 15 minutes of driving. 5 of standing/walking at a very slow pace. Mostly sat at the ball field except the previous mention of concessions and maybe 5 minutes of standing. Took Big D home, came home, walked up the steps, forgot my phone had to go get it and come back. Ate then, and went to bed at 12:30 AM. And promptly slept until 4:30 PM. I woke up a few times but only for short periods of time.

My hr has been high normal and tachycardic all day, even while laying, though my bp is normal. Most people wouldn't think twice about that amount of activity. There is a story from a website called But You Don't Look Sick called The Spoon Theory by Christine Miserandino (linked for your viewing pleasure) that pretty much sums it up. Stopping for gas or going to a ball game may be small change for some but each task is a spoon for me. And apparently I used up my reserves, my allotment for yesterday and a lot of my allotment for today. Just by going those few places with MINIMAL standing/activity. As much as I don't want time to fly by, is it August yet? And as much as I don't want my baby to be 1 yet, is it June yet? Story of my life and total "Can't have your cake and eat it too".

*Hopefully I corrected all of my phones incorrect corrections. I really dislike this version of autocorrect. My EVO I liked it, this one takes correctly spelled words and replaces it with other words if you use it a lot. My becomes mg, you becomes yoga etc. It's such a pain. I swear I'm not illiterate.

And of course it'll take another 20 minutes to publish the correction. >.<

Tuesday, May 15, 2012


I wish my body could regulate. I've felt crappy all day and now I have a migraine. Didn't get to sleep until 4:30, woke up at 8:30 completely disoriented (couldn't remember how to unlock my phone. Could not remember the code. At all. Then I overslept (went back to sleep and then hit snooze) and JUST made it in time for DCourtly's dental appointment. She had to have a cavity filled. Came home at 2 and tried to rest. *I* didn't have to get SDiva so I layed down, hadn't eaten, JSmiley was sleeping on me, luckily I had a breakfast bar in my bag. Big D had his first Junior/Senior league baseball game but didn't tell anyone until last  minute he needed socks so I had to leave earlier and be gone longer (4:30 - 9:30 >.< ). Then when we were almost there, I spilled my sprite all over me. Apparently it can get shaken up laying in my purse in my car while driving. Without moving. Who knew.

Had fun there but just sat on the bleachers except to go get nachos. Got home and upstairs and I'd forgotten my phone in the van so I had to walk across the street and back then back up the steps. Needless to say, I wasn't hypotensive, I wasn't even THAT tachycardic (112) but I WAS mildly HYPERtensive. Which we all know is abnormal for us. I've never seen it above 130+/80+, it was 155/97. Now I'm laying in bed feeling like crud. I swear in the grand scheme of things I didn't do much. It was spread out over several hours. And I know 1 reading is fine. I will just keep an eye on it.

I'm not worried, just irritated that my body can't stay consistent in one category. And that's about all. Feeling too crappy to continue.

Monday, May 14, 2012

Good(ish) Day

Big Daddy did well today. Rocky start this morning where I had to yell at him. He didn't tell me last night that he didn't have to work today and with the insomnia I was up all night. I got tired around 4 but he has to wake up at 5 so I stayed up to get him up. Then we started arguing about his lack of emotional support. I was rather blunt. He kept saying if I did stuff (like get out of the house more etc) he'd spend more time actually WITH me. After an hour of arguing and me proving him wrong he told me to get some sleep and he'd be a better husband.

Woke up by him bringing me lunch and getting the baby for a bit (on top of DCourtly). Then we went to Wal-mart and he ordered me a mother/family necklace with all our birth stones and names (which is why it's family not just mother). I've had miscarriages. The last one (before the baby) was really hard on me. I eventually want SOMETHING for at least that one.

We went by both the sports section (to look at the heart rate monitor watches. I wish they sold the ones that had a memory/storage in store. The one I looked at had an optional chest belt. Continuous ECG. I really wish I could hook it up to a computer or my tablet and view it/data.) and the pharmacy and bought a cheapish BP machine.

Got home and walked up the stairs and my hr was 146 bpm. I can walk up my stairs if I've been sitting ONCE and be ok. If I've been doing anything or walked up them multiple times or didn't feel well no matter how slow I walk I get tachycardic. Yay. Anyway. We "played" with it. Then I realized that often, my bp in my left arm, systolic is about 20mmHg lower than in my right. Thank you heart murmurs/conditions. Only now I don't know which to use. (See previous post/picture).

YES I know both are normal. However, say hypothetical #1 I'm dizzy - bp in left arm is hypotensive but bp in right arm is normal? Hypothetical #2, when I'm put on beta blockers, bp in left is pretty low, right is normal, taking the bb would lower it, left is really low, right still acceptable but low. Or if I had hypertension in one, normal in the other. I mean, YES, my readings aren't hypertensive or hypo, but, 20 points is a bigger difference. So which do I use?

He also brought me dinner and then cuddled with me for a few minutes when I felt my anxiety flaring.

I got a little worried earlier, ever since last night I had sharp twinges in my head above/behind my ear. I may have written about it, don't feel like checking. It was off and on and happening today too. But apparently it was just tension.

Anyway, more later?!

BP Discrepancies

Found a new question to ask a doctor. This is normal FOR ME. My BP is usually off. These readings were taken one right after another (just long enough to switch and start) with the exact same conditions.

So which arm should I take it in? Which is most accurate? Guess I'll be doing both until I see a doctor and figure out which he would prefer.

Bad Dreams and Erratic Pulse

Just had the worst dream a mother could ever have. I'm officially ticked off at my dreams and what ever controls them. But that's not necessarily why I'm writing. I woke up with an erratic heart beat and just feeling like crap and used an app to check my heart rate. I'm not sure how accurate it is but it's probably fairly close when I'm resting.

Anyway, the picture below is MY drawing of the graph it made (it doesn't keep it, just the number and a section where you can leave a note. By the time I got my camera out of my purse to record it, it quit freaking out. It's not the full graph, top is what it NORMALLY does, bottom are some of the waves. I'm Sucky at drawing so it looks crappy but that's what they looked like. Don't know what they are and I'm having trouble finding pics but the middle one kind of looks like premature atrial beats. The bottom is normal enough except it'd be short waves then the waves would descend and it'd be the longer normal waves and THEN it'd do the other two.

I want to ask Dr. Merrill but I think he'd think I'm crazy. I don't know how accurate the NUMBER is, but the beat pattern is what I felt.

Anxiety Rant

I know there is a link between my sleep problems/deprivation and my anxiety. Today was a bad anxiety day. Big D's Junior league baseball organization is so unorganized. He has 1 coach who is very busy plus had back surgery so he asked me to help out with calling team members/their parents and letting them know scheduled events and changes. Like they have a game that wasn't for sure. He called and asked me to call the team. And if it rains or if there are any problems, etc. I stupidly said I guess. Talking on the phone to *STRANGERS* makes me anxious. I've felt off since then but now I'm just antsy and going crazy. Not literally, I appear calm but internally I'm all locked up and I just feel *off*. I hate anxiety.

Sunday, May 13, 2012

Mother's Day

Happy Mother's Day to all the Mommies out there. Whether you have human babies or fur babies, living children, womb children or precious angels. Or any combinations of the above (or forgotten options). <3

Sleep Deprived Ramblings of the Chronically Ill

It would figure that the 1 month this year I haven't had any appointments my kids' health would tank. First DCourtly came down with a virus. She was in her room and Big Daddy was out in the hall. Told him she had a headache to which he told her she was too little to have a headache (seriously, I need to have a talk with that man about medical stuff, and just ban him from discussing it without my knowledge) and she preceded to projectile puke quite a ways. Fun right? Then SDiva got it, yucky feeling and headache and add raging fever that wouldn't stay away. Every 4 hours it would come back.

JSmiley didn't get the yucky tummy but she did have a fever and was very gassy. I don't know if she had a headache. When she went to sleep her temp was 99 but as the night wore on it slowly climbed until it was 102.6°F at 3 AM. I had tried to wake Big Daddy up at 2 when it was 101.3 with minor luck. (I tried waking him up, it took an hour and when he got up is when I discovered it was 102.6 so no, I didn't wait while her fever climbed - we didn't have infant fever reducer here or I'd have gotten it myself). He has an abscessed tooth and has been taking max strength goody powders, which for SOME reason make him super drowsy, along with the antibiotics/ibuprofen/etc his dentist prescribed. On top of him being a heavy sleeper. It's lucky the apartment didn't catch on fire. He's so difficult to wake up. But anyway. We got her some meds and it broke and never came back while I was awake. It was pitiful though. I could tell she was miserable, she was whimpering in her sleep even! :( I really hate when my kids are sick or hurt. I know I was happy to have no appointments or tests this month but not at my kids expense. I'd gladly see doctors weekly if it meant my kids were completely healthy. Granted weekly appointments are a PAIN! But still. Also, JSmiley still has that bump on her eye. It's day 15. I'm calling her doctor monday. This is ridiculous.

I'm still sleeping badly. When I CAN sleep (like when everyone else is sleeping) I'm wide awake (it's 5 AM, I got 4 hours of sleep YESTERDAY - not last night). Yesterday I was tired but JSmiley had the fever so I didn't get to sleep until after 4 and a transformer blew a little after 8 waking me up and I couldn't go back to sleep. Never fails. I'm apparently not allowed to sleep. The world is conspiring against me. Feels like it sometimes.

I bought 2 notebooks yesterday, a mini one to take to appointments for questions and quick reference and one to keep track (bigger one). I also am going to get a bp monitor and hr watch. It will be very useful for when I'm symptomatic plus after I start meds I can see how it's affecting me. Like the change (good or bad, large or small) or no change that happens from not on meds to on meds. I know I see a lot of dysautonomia patients mention them in blogs or on forums so I figure I'll go ahead. I have a glucose meter that I no longer use (my OB theorized my dizziness/fainting in 1st trimester and dizziness thereafter was the result of either hypoglycemia or hyperglycemia - reason I have it). Granted my levels did fluctuate wildly (62 - 168 fasting) it wasn't consistent and my gestational diabetes screening was normal. I might dig it back out. The time my level was those two I was very symptomatic. The 62 reading I had to eat chocolate before I was even able to get up. I was super weak and dizzy. But it fluctuated so much it was crazy. I think I will do it, at least on a trial basis to see if it still fluctuates like that almost a year after pregnancy. Maybe. That'd be heart rate, bp and sugar to keep track of, not including the future meds and anything any of my doctors want me to do as well (if anything). Hmm. Decisions.

Anyway. Good "night" for now. <3

Saturday, May 12, 2012


1. The illness I live with is: Neurocardiogenic Syncope (NCS), Inappropriate Sinus Tachycardia (IST), Sick Sinus Syndrome (SSS - tachy not brady), Mitral Valve Prolapse Syndrome (MVPS), Gastroesophageal Reflux Disease (GERD), Insomnia, Migraines, Anxiety, Palpitations and many many more.

2. I was diagnosed with it in: NCS, IST - February 2012, SSS and MVPS - April 2012, GERD - December 2007, Insomnia still testing, migraine not formally diagnosed, anxiety - 2003, Palpitations - 2012, etc.

3. But I have had symptoms since: NCS - 1999. IST - 2007. SSS - 2007. MVPS - 1999. GERD - 2007. Insomnia - 2005. Migraines - 2000. Anxiety - 1998. Palpitations - 2007. Etc.

4. The biggest adjustment I've had to make is: Not being as active as I'd like.

5. Most people assume: That I'm lazy or pretending.

6. The hardest part about mornings are: Being awake. I'm either exhausted from no sleep, still tired from poor sleep, tachycardic from my alarm startling me, etc.

7. My favorite medical TV show is: Probably House. Though Scrubs is ok.

8. A gadget I couldn't live without is: My cell phone. If I didn't have it I'd forget a whole lot, be bored, not be able to research, not get help if I need it, not be able to keep track of anything etc.

9. The hardest part about nights are: Not being able to sleep, migraines, anxiety etc.

10. Each day I take __ pills/vitamins: Currently none. I'll be starting a few in August though.

11. Regarding alternative treatments: Depends on what it is and if it works. I'm leery of alternative stuff though.

12. If I had to choose between an invisible illness or visible, I would choose: Neither. And I know that's not an option but they both suck hard core. Visible illnesses you are the shock or horror or disgust or pity. Invisible it's hard to get help or people to believe you. It's a lose/lose situation.

13. Regarding working and career:  It's not currently possible.

14. People would be surprised to know: Just how bad I feel/how sick I am. Which brings us back to "invisible illness". I don't LOOK sick. When talking to friends, their eyebrows meet their hair line and jaws drop. Techs taking my history "My goodness, you're only 23!" Not even my spouse knows the full extent of it.

15. The hardest thing to accept about my new reality has been: It's not new. I've been sick for a very long time. Though I suppose the whole "there is no cure" is new so there's that. That is hard to accept. Even medicines I'm going to be taking can only try to lessen my symptoms. My "treatment" plans aren't to cure, it's to manage. And that sucks.

16. Something that I never thought I could do with my illness, but did: I never knew exactly what I had or it's limitations so this question will have to be put on hold. Maybe I'll make a long bucket list.

17. The commercials about my illness: As far as I know, my biggest ones, there are no commercials.

18. Something I really miss doing since being diagnosed: Nothing. The diagnosis didn't change anything, it just have me clarity. What I miss pre-illness - being active and wholly happy.

19. It was really hard to have to give up: Being active, doing whatever whenever.

20. A new hobby I have taken up since my diagnosis: Nothing yet. I'm in the market.

21. If I could have one day of feeling normal again I would: What is normal? I've been sick more of my life than I've been healthy. I'd love to feel completely healthy for one day and just be able to do a million things without getting tired or dizzy.

22. My illness has taught me: Don't take small things for granted. Those stairs you just walked up? Will make my heart race. Running late and rushing? I'll be lucky if I don't get dizzy, tachy and out of breath. Your kid is bothering you wanting you to dance with them or run chase them? I can't do that without being physically exhausted. Picking toys up off the floor (or anything really) I can't do that, it makes me dizzy. Try deep cleaning while sitting, and no ups and downs. Yea... It takes me hours to clean.

23. Want to know a secret? One thing people say that gets under my skin: You don't look sick/you're not that sick. I'm so glad you know how I feel. I know I don't look sick. But I am. I try not to show it though because it's depressing and even embarrassing. Most embarrassing public moment. Passing out in Walmart while pregnant.

24. But I love it when people: Believe me. Sympathize. CARE.

25. My favorite motto, quote or scripture that gets me through tough times: Cheesy but all I've got is "What doesn't kill me will only make me stronger."

26. When someone is diagnosed I'd like to tell them: You're not alone.

27. Something that has surprised me about living with an illness: The level of denial. How exhausting every day tasks are.

28. The nicest thing anyone has/can ever done/do for me when I didn't/don't feel well: Care. Even if you can't "fix" it, let me know you care. Run my back, hold my hand, hold me, just being there helps.

Wednesday, May 9, 2012

Long de-stress ramble (part 2)

Please see part 1 before reading this one!

Just as I suspected, too long for just one post so it got broken into 2. I ramble a lot. It doesn't help that I currently have insomnia because that last sleep study threw me off again. Anyway, continuing where we left off...

So I don't have "proof". Some of it stems from frustration on how I've previously been treated making me wary (reading all this, knowing it's only PART of it, do you honestly blame me?!), some stems from not wanting to be labeled (boy that one sure comes back and bites you) or not wanting to be on pills of any kind (guess that one is out since I'll be at least starting a beta blocker plus maybe 1 other and birth control - I can avoid pregnancy, I haven't been on birth control except 2 months since August 2009, and we tried for Jocelyn, it's mainly to regulate my screwy body, oh yea there are two more maybes, PCOS is a "maybe" and pre-second pregnancy, endometriosis was another "maybe", never tested for endometriosis, got pregnant, PCOS, I had a transvaginal ultrasound while on birth control one of those two months and the technician reported that my "ovaries appear polycystic" but no formal diagnosis) in August. Another is that I don't want to be on a million different drugs. That's 3 (well 4, one of the meds I'm supposed to take 2x a day, he said really 4x but that's hard to remember), hypothetically lets add 1 for anxiety, 1 for depression, 1 for insomnia, 1 for GERD, maybe something for pain, something for migraines. That's 10 right there. Hypothetically of course, that probably wouldn't happen. Speaking of suffering. If this daily/nightly GERD/reflux doesn't go away and take the pain with it, I'm going to go insane. I guess it's time to get all my ducks in a row and quit suffering quietly. At least all my symptoms (well most) I've gone to see someone for at least once, whether I was actually diagnosed. I can be like look, check this hospital/office during x time and you'll see I went for it, it just wasn't diagnosed. It's not like I'm sitting here like "What can I put on my list of problems to get help/attention". Nope, you can name any of my symptoms and I can tell you either the year, my age or what I was doing when I first noticed/remembered it. That's the good thing about me. I am very smart. I remember quite a bit. Here lately brain fog has been ramping up but that's why I've taken to writing everything down. Even if I can't remember exact dates, I can go back and look. This thing is so massive, whoops.

Long de-stress ramble (part 1)

Trying to de-stress. I don't know if I'll blog this or not or if I'll bring this up to any of my doctors but since I'm already talking about it in my head, I might as well get it down on "paper". I've learned over the years that bottling stuff up is BAD for me, I suppose it's bad for everyone but it messes with me mentally. I got a lot "out" in my mental conversation so I hope I don't forget anything. That's one thing I do, hold "mental" conversations with people. I'm actually reasoning stuff out in my head to get it off my chest and envisioning that there is a person listening. Kind of like when you have an argument or someone insults you and hours later you think of the line that would have been PERFECT at the time and play out the conversation using that tone and line... Yea that. Only me?

Anyway, basically I'm overwhelmed. I need to get it all out. My mental partner was my primary doctor, the one who is or was on leave. About my conditions. I was looking up disability qualifications online but everything needs "proof". I understand that but the way my history has been, I don't have much by way of proof. That's what is currently annoying me. I know I have anxiety and depression but the SSA website mentions proof and severity and length of time you've had it (that's just 2 things). I can tell you when I first noticed things. But that isn't "proof" medically. I've been MOSTLY suffering in silence for 13 years. That's a LONG time, but on paper, there isn't much.

The first time I remember having an anxiety attack, I was 9. Yes I've had anxiety since at least 9, possibly longer. It wasn't formally diagnosed until 13 or 14 though. I guess you don't expect many 9 year olds to have a panic attack. I remember Mom taking me to my pediatrician and him prescribing 3 medications, including an inhaler and telling Mom "Try these, which ever works, keep doing it." Wtf right? I don't remember anything about the other 2 medicines but I remember a few more panic attacks and me trying to "treat" them with the inhaler. Looking back it's OBVIOUS what it was. I was panicked and couldn't breathe and hyperventilating. I was diagnosed in middle school only because I had MULTIPLE panic attacks in a 1 week period. I was put on paxil and saw a therapist. The paxil took away ALL emotions, not just the anxiety. I'm guessing that it wasn't the right medicine or the dosage was too high but I felt like a zombie, didn't like it so I quit taking it. And it was a bad time for me, I was rebellious and didn't trust anyone, including the therapist so I quit going.

I've had people/doctors tell me my conditions were anxiety over the years but I've never gone back to a therapist or on meds and those weren't correct. I DO have anxiety but it's not well documented by medical professionals, and even though I have anxiety, it's not why I was seeing those doctors, it's not what was wrong with me in those instances, but many Dysautonomia patients have the samen experience so I'm preaching to the choir on that one. And aside from needing proof, as I was "unloading" on my mental conversation, I realized I probably WOULD benefit from seeing a therapist. But that makes me anxious as well. I'm scared of being labeled with depression and anxiety. I'm scared people/doctors will keep brushing symptoms off as anxiety.

But I'm sick of hearing (like from Big Daddy) "Ever since you got diagnosed that's all I hear is about how you have all these conditions." He's getting better most of the time (forcing him to educate himself helps a little). What is so hard to understand about it? Just because I haven't been diagnosed or just recently diagnosed or diagnosed YEARS ago and no medical activity SINCE doesn't mean anything to ME but apparently it does to everyone else. Just because I haven't had everything diagnosed doesn't mean I'm healthy in those aspects, I'm just now getting to the point where I'm not taking "You're healthy" for am answer and am pushing for the truth. Just because I just got diagnosed with some things THIS year doesn't mean it's new! I've been passing out since I was at least 10. Everyone knows that. They can check my medical records. My relatives have witnessed it. They KNOW it's been happening for years. The only difference is NOW it has a name, NOW I know why. But the day I received that diagnosis was February 2012. It's a "new diagnosis" but I've had the condition itself for 13+ years. Then there's the anxiety, I haven't seen a doctor/therapist for it in 9-10 years same for medications. I've had 2+ doctors give me the number to a local therapist since becoming an adult but that's not the same (is it?). But just because it's been 10 years +/-, that does NOT mean I don't have it.

I kept mentally mentioning the fact that I've been mostly suffering in silence for years. That's the biggest part of my lack of "proof". Before I'd go for everything, the anxiety/therapist thing put me off, then doctors brushing me off put me off and not getting help or diagnoses made me mad so I really do suffer in silence. If I'm hospitalized, I don't ask for anything. Pain wise I take only what's offered, I don't ring the call bell unless there's no option. I'll wait in silence for the nurse to make rounds. If I'm confined to a bed and need to pee, I wait until I can't wait anymore (again, hoping it's close to time for the nurse to make rounds). I don't like bothering them, even for legitimate NEEDS, despite being told "that's what we're here for!" Though the few times I HAVE used the call bell, I was brushed off as well. Short of breath while pregnant with my first I was in the hospital after falling down steps and going into pre-term labor. I was on magnesium sulfate and confined to the bed and could NOT breathe well but the nurse ignored me because my sats were 99%, feeling short of breath or like someone is sitting on my chest is a frequent symptoms now. Once my catheter quit working (same hospital stay) and I kept telling the nurse I had to pee "You have a catheter, you just feel like that because of the irritation, you're fine". I ended up peeing myself because the stupid thing failed and they had to "make SURE my water didn't break". I've been telling you I had to pee, telling you I did pee. Why could they not believe me? Ever! Oh yea, that just adds to my frustration. Then they removed the foley but I was still confined to a bed so I had to call the nurse to help me (bed pan, ugh) and again, I wait till I HAVE to go. Did that once and again, took their time. Took an additional 30 minutes on top of me waiting. I was on saline and mag sulfate and group-b strep antibiotics as a precautionary measure since I hadn't been tested. And don't EVEN get me started on my most recent labor nurse and the residents. This post is already massive. I don't like taking pills, even for my migraines, unless it's severe/debilitating, I won't even take tylenol/ibuprofen most of the time. The insomnia/sleep issues, I don't want to be dependent on meds so I didn't bring it up until recently and that's only after years of people saying "That's just not normal, you need to see a doctor!" that I finally gave in and said FINE! The GERD, I never complained until I was pregnant with my second, I was physically sick for a week STRAIGHT, no breaks before I finally went to L&D for help. The heart palpitations, the 1st and only time I went over those, I got yelled at that it was anxiety and I needed to see a therapist and not an ER doctor. The only time I mention them now is regular doctors patient history and if directly asked. I don't go in if I'm dizzy or faint anymore unless it's really bad (like the time I couldn't talk after and I was pregnant, or the time I couldn't QUIT fainting, was grey pretty much and freezing and spent 6 hours in the ER *laying* flat trying to get my heart to slow down) just some examples. The migraines/plain headaches, I've only gone in once and that's because it wouldn't go away (got a shot of something and was sent home, slept all weekend but the one time I tried to get up and eat, I passed out twice), I don't do anything except try to control it or sleep through it because I can't go in all the time, well I could, but I don't. And it wasn't until the neurologist who read my sleep studies recommended I see a neurologist that I was able to get in. When I asked for a referral I was given one but the neurologists the referral woman called refused my insurance so I gave up.

See next post for part 2.

Monday, May 7, 2012

Sunday Pains

I don't know if I can handle the heat. It's *only* 81° F and I've been miserable. It's also 7:30 PM so it's starting to cool off. We don't have central heat and air and my room is hot but every time I go down stairs I feel like crap (even though it's cool/cold). Plus shortness of breath, not really an inability to breathe, just a feeling as if someone is sitting on my chest. Then there's the pain. I've got full on back pain like usual but I've also got some spots that are more painful. I guess tension spots. My muscles in general hurt. My arms and legs, my back and my neck. Not excruciating for the most part just... bothersome. I don't know how to explain it.

I really want to move. I need a 1 floor 3+ bedroom with a/c. I could handle things better if I was cooler and didn't have to trudge up and down stairs. And my neighbors annoy me. I live in an apartment complex and there's an abundance of undesirables. There's a lot in my city but the complex is kind of big so it seems like a lot. I don't like the undesirables so I stay inside. I want to move to a better location. That's one of my goals. There isn't much affordable on a single salary though so it's a goal I'm going to have to work towards. We've lived here since June 2009, I'd like to move.

Still nowhere on the research but that's probably a good thing. Dr. Google is pretty good at freaking people out. It's smarter to just research/stick with what I know or things in general. I'd like to have a baseline knowledge for my appointment but I don't want to freak myself out, and let's be real here, with my anxiety, it's a real big possibility.

That's the first time I've had an entry all typed out in my notes section and FORGOT to post it. Whoops.

Sunday, May 6, 2012

Neurology Appointment babbles *edit

Well my doctor's appointment isn't until the 5th of June. The day before JSmiley turns 1. I don't have a single appointment this month. It feels weird. I've had at least 2 appointments per month, monthly, if not more. Granted I like not having to deal with multiple appointments. I wish the neurology appointment was sooner though at the same time. I don't like having to wait on things. I'm very impatient. I want to hurry up and get on with the testing. I want to know what the heck kind of disorders of the REM cycle I have. I don't like not knowing. I think I'll try to research and see if I can find something. I wonder what kind of tests I'll need to do. I think an online friend of mine said a CT? I don't know. I know she said I'd be fine unless I was claustrophobic (she had abnormalities of the REM cycle too) and the only test I can think of that would be a problem with that is an CT. And I'm STILL not sure what the abnormalities of the REM cycle are. I guess I just have to wait and ask. You can't just say there is an abnormality, I want to know exactly WHAT is abnormal about it and why.

And despite me thinking I don't have seizures. I'd like to go ahead and get testing set up and started. I don't want to wait a month and then have to wait longer on the testing. I'm VERY impatient. I just want to hurry up and get it started. I actually want everything to be settled. Of course I know it'll take time but I find myself REALLY impatient since it took 13 years to just get THIS far. I really don't want to wait a whole lot longer. I want the appointment to be like NOW that way I can know what's going on and what we're going to be doing. I guess I'll spend this month researching and stuff. Anyway, my head, neck and my back have been killing me so I suppose I'm going to go ahead and get off here. Research!

*Edit* I originally wrote MRI but went back and checked and she said CT so I edited it but put this in case someone already read it or if I missed some changes. Still researching, still lost.

Wednesday, May 2, 2012

More, More, More.

More, more, more. More doctors, more testing, more possibilities. I'm sick of doctor appointments already. I think the only time I've ever had more was during pregnancy. I had to go to a neighboring city to see a FNP (family nurse practitioner I assume) since my PCP (primary care physician) is on "extended leave"*. They didn't have the last result (from the deprived sleep/drowsy EEG) but had access to the first and called and got the second. I'm assuming it was sent to my regular doctor. I'm still just as confused as ever.

Basically here's what I was told. It was negative for obstructive sleep apnea (apparently 5 or less (possibly even more) apnea episodes per hour is normal) however there WERE "abnormalities". Supposedly with my REM? And that's why they wanted to do the second? I don't get it. I wasn't told what kind of abnormalities just that there were some and there was a recommendation that I follow up with a neurologist "to rule out seizure disorders". Since it's not my thyroid or sleep apnea now they're saying that MAYBE I'm having seizures while I sleep?

I know I had some kind of test when I first started passing out I had minor testing that showed I wasn't seizing. Ironically it was an EEG that I fell asleep during. I'm assuming I'd been kept up the night before? I can't remember that part. I figure based on that I don't have seizures but it WAS 10 years ago and back then it was only 1 - 2 times per year I'd faint then I'd be fine for a while. Maybe they missed it (like everything else, ever). I'm thinking good thoughts though.

I asked the FNP if seizures were part of the autonomic nervous system and she said "Yes, absolutely." I don't think I have seizures but you never know. On the plus side, I DO have migraines so maybe s/he can help with that. Dr. M thinks the meds will help but assuming it's NOT caused by the NCS/Dysautonomia. I don't know when it'll be, they said they would call me with the appointment.

Ok it's taken me all day to write this much. JSmiley has a sty, poor baby. She doesn't act like it bothers her but it looks awful. :( Big Daddy bought me some movies and books to keep me company and for early mothers day. Then he also bought me a giant card and had SDiva and DCourtly sign along with him and he signed JSmiley's. SDiva had her first school "play". DCourtly has a dental appointment this month, she has a soft spot on a tooth (the step before cavity). JSmiley will be 11 months old REALLY soon. Hard to believe she's almost 1 year old. Anyway, later!