Monday, December 24, 2012

Sick and Family

I'm sick of being sick. I know that doesn't change it but still. Today my GERD is on the fritz so I'm bloated, burping popcorn (taste, this is why I don't like popcorn) and making frequent restroom trips. I need to get this managed. I've taken 4 OTC strength prilosec in two days.

Not like I can do much. Big Daddy checked and the transmission is full of fluid. My neuro appt is in 10 days. I need to get a referral to a new GYN singe my favorite one no longer accepts my HMO. MAYBE I need to do something about this too. Burping/gas isn't on any official GERD symptoms list I've found but all forums say their doctors told them it was and that combined with gastro symptoms is what sent me to the hospital which led to the diagnosis. Is this normal GERD or do I have a more severe case. I don't know. Hard to tell.

I no longer feel as though I'm going to throw up so I'm assuming it has to do with a combination of acid and the amount of gas that results. Tons of burping and other not pleasant symptoms reduce the amount of gas and while I'm still burping (etc) and feel like crap, I don't currently feel like my stomach will expload or like I'm going to puke. I know, this post is so lovely, but it is what it is.
On top of that, I'm having mild to moderate with the people in my life. I was talking to Mom the other day and we got to talking about religion and why I don't go to church. The reasons are very emotional and private so I won't go into it here, at least not now. Anyway that also tied into a conversation about my health. Apparently she's been under the impression I stopped being active and THEN got sick. How she reached that conclusion since I've been sick to sime degree since childhood I'll never know. Apparently that's a common belief about me. Everyone thinks if I "get off my lazy ass" (though to be fair, *most* people say it nicer than that) that I'll get better. I shut it down with her fast. I hope not rudely but I didn't hand hold. I told her I didn't get sick from not being active, I stopped being active because I got sick. I reminded her I never could clean my room normally, I'd have to sit and clean one area then scoot to the next (bending over is huge on my can't do list), even before I "got sick" and back then I could run, go long distances, climb trees. Normal activities for a child. I was sick then, and active. And when I started passing out, those first 5 years I was VERY active. We lived at the beach, I'd go swimming, I was too young for a car and so I walked LOOOOOOONG distances with no issue. I was sick then too. I reminded her of moving here when I was 15, how I was active then. I'd hang out with friends and go places. Again, I was sick then, and active.

By the time I was 16 the insomnia and hypersomnia had made an appearance and though it didn't bug me much then, tachycardia showed up while pregnant. I only know that because of frequent preterm labor episodes where they'd pick up my heart while trying to find hers and get freaked because it was higher than normal for me but too low for a baby. I was active then. By 17, I had my first heart palpitation. I was tired and losing steam then though I didn't know why. I was chasing a baby then too. Still active and "pushing" through it. By 18/19, during my pregnancy with DCourtly, the tachy REALLY ramped up. After it didn't really go away but went back to "manageable". Again, I was active but getting weaker. I had TWO babies, and after a while I got a job at a hospital working 12 hour shifts as a patient care tech on the cardiac floor (har har on that one). I only sat on breaks and to chart. The ENTIRE 12 hours. Well, technically longer since you were suppised to get there 15 minutes early and sometimes had to stay late. Still active, but again, losing steam. The biggest difference there was our house we rented was one floor not two like all the apartments. However those 12+ hours drained me and I couldn't do both. I quit. When we moved where we are now 10 months later I was still active but again, slowly losing steam. I didn't really notice as it was gradual.
But then I got pregnant with JSmiley and it hit HARD. Passing out, pre-syncope, severe tachycardia and SOB, everything. I haven't recovered since. So no. I did not just get lazy and waste away and THEN get sick. Seriously?

And looking back, steps always gave me a problem. Even when I was super active I'd get short of breath. Climbing did too but I was too young to notice I wasn't "right". Oh well. This is long enough without going into others except to say Big Daddy has taken to complaining that I'm "always sick". Well yeah, that's kind of what chronic means. As to my simetimes good days... I have multiple chronic conditions. I'm usually tachy or something, or dizzy, or GERD, or a migraine, or narcolepsy, etc. And then you have common illnesses that most people deal with. Flu, cold, bronchitis, sinusitis, pneumonia, gastroenteritis, etc. I get those too. So while he only gets the "normal" ailments and "I'm only sick every so often", that's all fine and dandy but you don't have chronic conditions on TOP of that. So yes, I'm "always" sick. I'm texting him a screen shot of the definition of chronic.
chron·ic -
1. (of an illness) Persisting for a long time or constantly recurring.
2. (of a person) Having such an illness.

Friday, December 21, 2012

Murphy's Law

If it weren't for bad luck, I'd have no luck at all. Yesterday, Big Daddy was on the way home from work, and the transmission went out on our car and my GERD was acting up. We had the van towed to our friend's dad's house since we live in an apartment and today it's snowing so we can't go look at it. I'm hoping it just needs transmission fluid but my luck sucks. Christmas is pretty much postponed until tax time. We've been playing catch up on bills so this check was going for that. We had to spend $150 just to have it towed. So yea. No car and no Christmas. Unless it just needs fluid, but even then it just upgrades to sucky.

One thing after another. :(

Wednesday, December 19, 2012

18 months, and where has the time gone?

JSmiley had her 18 month appointment yesterday. As you may remember (or just travel back a few entries to "Emotionally Exhausted"), according to the stats I was given at the time, she'd only gained 1 ounce in 3 months and had to go through a bunch of tests (really it was only 3 but the blood drawn was used for multiple tests). I was given 15 pounds 10 ounces, 27 inches as her stats.

Yesterday and the night before I was worried about it but the nurse passed up 16 pounds and I got exited. She weighs 16 pounds 7 ounces now. That's 13 ounces! Almost a whole pound! It may not seem like much, but considering it took 6 months to gain a pound (between 9 and 15 months and 3 of those months the gain was laughable) it's pretty good. Hopefully she continues to gain this well or better.

On to height. I'm not sure WHY but for some reason the height I was given and the one he had recorded was off. When the nurse measured her I managed to look at her and noticed her shoulders were scrunched, like she was shrugging. The nurse said 27.5 inches. I mentioned to the doctor when he came into the room and he said "Oh good, if it were 27.5 she'd have had no gain since last time in height." I told him I'd been told 27 even but that doesn't really matter, it just makes me feel off since I'd spent 3 months thinking she'd had NO gain except 1 ounce ( and have you seen an ounce of liquid lately?) Anyway, half an inch and 1 ounce is still very little but it's more than "JUST 1 ounce". Anyway, he re-measured her and said she was 29 1/4 inches. That's 1 3/4 inches and 13 ounces gained. MUUUCH better than last time. She doesn't need to be seen again (except if she's sick) until her second birthday.

Also I'm feeling nostalgic about time. My BABY is 1.5, she'll be TWO in June. DCourtly, my middle monkey, will be FIVE in March and starts school in August. And my big girl, SDiva, will be SEVEN in March. She's in 1st grade and will be in 2nd in the fall. I know this amazes me every year but seriously. In 3 months I'll have a 7 year old. In August my cuddle bug middle child will start school. No more joining nap with Mommy and Sissy during the week except sick days/holidays/etc. And in June my little tiny baby will be two. Time goes too fast. I remember waiting on MY birthdays, thinking they'd never get here (I'm impatient) but it seems every time I blink, they're another year older.

Saturday, December 15, 2012

Remember December 14, 2012

Just a graphic in memory of BOTH school attacks yesterday.

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

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

So much loss, so much violence.

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

My heart hurts.

Friday, December 14, 2012

There are no words

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

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

There just are no words to describe such profound loss.

Guess Who's Back?!

*Peek's head in*

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

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

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

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

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