poppetkazutaka

YOU ARE TOO FUNNY... MOST PEOPLE PICK THEIR NOSE AT RED LIGHTS and think no one is looking...LOL! No really, I hope everthing will be ok. I have to use flonase or I'd never breathe am and pm. It's a script.

Oh wanted to ask where your deviant art page is or how to find it?

I want to see you dolls...

Take care...

Ah, my devart is http://poppetkazutaka.deviantart.com/ ~! :3

And hopefully they won't stick a balloon up my nose! XD

So I went to the ENT doctor on Friday because the infection in my sinuses is getting worse without the antibiotics and isn't clearing up with them. He was quite shocked and even did a double take when he looked up my nose. I've had the knack for making doctors make the following face before:

Seems that during this round of infection, when I was picking (yes, I pick in the bathroom and wash my hands right after, thank you) at my nose so I could breathe, I wasn't just picking out blood clots and infection...

"...do you pick your nose?"

"Uh...yeah...I can't breathe so I pick at the clots when blowing doesn't help and sometimes it's really tough so I pull really hard and it bleeds..."

"Do you realize you're picking apart the septum?"

"Oh. Well, that explains why my nose felt different shaped after a while..."

"You realize you're going to break through eventually?! Do we have to break your arms?!"

"I'm sorry!"

"Don't apologize to me!"

"I'm just so desperate to breathe that I'll do anything! Help me and I'll stop picking it!"

Cue the again and then he couldn't look at me. He gave me a pamplet on sinus rinsing and setup a CT scan for my head to check on the infection and impaction since the X-ray the dentist did was too infused to show any detail. I was so embarrassed that I shocked a ENT to the point that he could no longer maintain eye contact that I was flushing.

Here's to hoping the CT shows something. I mean...I know it hurt to pull at it but...I didn't think I could yank apart a septum. I mean...wow. I really have been desperate to breathe...

In reference to the person who mentioned you have to "up" the dosage of Propranolol every six months:

It's important to remember that POTS has so many root causes, most of which we understand so poorly, that it is impossible to make any general statement about its treatment. For example, I have been on Propranolol since early 2007 - for the first 3 months, it was 20mg a day, now it is 40, and I have remained on that dosage for over two years, with no lessening of effectiveness. I have good days and bad days, but overall, on my typical day, I feel somewhat better after two years on the drug - not worse.

So - the rule of thumb with POTS medicine is - "your mileage may vary"

Ooh, they told me that the effectiveness lessens due to tolerence and the fact that your body tries to get around it so it was every six months it had to be revisited. All I know is at three and six I've had to up the dose, but I have high tolerance levels. My body likes to work around things because it's stubborn. XD

A migraine symptom is vomiting and nausea. I don't throw up easily. The last time I did was when I got sick from taking hydrocodine and going to bed, and before that was overdosing on hydrocodine while on a liquid diet. But it was the only thing to stop the pain I was in. Before that it was when I ran the last fever I would ever run, at 104, right before I blacked out when I was a teenager with like...five infections and brochitis. It's very hard to make me throw up, but I do get nausea often. I call it morning sickness. It's why I don't eat too late at night or too early in the morning. :3

It's the one that he started me on and I think it's the one with the less amount of side effects. I love my Propranolol. It's made such a difference in my life. [hugs it] The only problem is you do have to up it every six months.

If you have PCOS and you are overweight, the best thing is to lose weight, by eating less and exercising more. That's often enough to restore normal cyclicity and fertility. Or at least that's the best thing if you don't have POTS. Sometimes POTS makes it impossible to exercise much.

As one who goes to a dietician BE VERY CAREFUL with this advice. Always make sure you are getting what YOUR METABOLISM is to get. I was trying to eat less and was only getting 500-1000 and was GAINING weight. I damaged my metabolism to -7%. Apparently, I need to eat (at least now) 1450 a day and exercise only 300 calories of that away. Anymore and I will not lose.

Always see a dietician or doctor before starting a weight loss program. ALWAYS. Especially if you have PCOS and YOU WILL have issue losing weight like I have.

Also, for me, I'm not trying to get preggie so I started Tri-Nessa and that has helped tremendously with the clots, pain, and other symptoms. I have had trouble free periods for three months now. :3

I always liked it better when I worked as an overnight janitor or a 911 dispatcher. Night work is better for me thanks to an altered circadian rythym! We have night guards at my job. Just don't fall asleep like one of our former guards and get taken on a cell phone camera. XD

I run low grades a lot, and I don't run true fevers even when sick unless I'm really, really sick because I usually have a low temp. But if I have eaten, or am leaning a certain way (ie I have been leaning forward working on sewing, reading, or on the computer) I flush into a low grade fever because my body temp raises when I focus on stuff. :3

Olives and Spagettios. (not together!)

One of the things you've got to watch with the bananas is the potassium. Sodium and potassium regulate one another, they will be inversely related. If you want to lose sodium, take in potassium, if you want to keep sodium, drop potassium. So salting a banana is probably a draw.

I didn't know that! Cool beans~! :3

I also love Spagetti Os.

... I like salty fries with frosties (Wendys, I'm looking at you, XD)!

Me too. Good for dippin'. And Wendy's salt packs are indeed handy. The salt on the fry "activates" the super-frosty goodness.

I could probably buy salt packets at Costco or something... but I think the therapeutic effect from mild adrenaline surge of "slightly overconsuming" an item offered for free does me good... a limbal liberum arbitrium perhaps.

(XD is like LOL, right? Smiling face but not on the floor spontaneous laughter )

XD is just another smiley like smiling so brightly your eyes are closed. :3

Yeah, I forgot to mention when I started, which was around age 11. I was also an early bloomer. I grew into my breasts and pubic hair around that time.

I haven't had it in a while but I like peanut butter, bananas & garlic (like on a sandwich)... and you can add salt to that. Salty avocado is great... they're pricey so I just have those when they're in season and falling off the trees here, for free.

I put salt on pancakes, add it to protein drinks, eat it straight (I steal little packets from places to carry with me... shhh, don't tell).

Like Bubba Gump Shrimp where everything is shrimp... maybe there could be a salt restaurant? "Steak 'n' Salt, Salt Kabobs, Fried Salt, Salty Ice Cream topped with Salt, Salt 'n' Chips, Salt Beer..."

Or "Battle Salt" on Iron Chef America?

Ooh, I used to add salt to ice cream, too! I like salty fries with frosties (Wendys, I'm looking at you, XD)!

I'm a little off since I'm sick but...

Some days I feel like, "Awww maaaan, I'm stuck in this place again?" XD

Cause I think I would rather be upstairs. XD

But...I feel my heart racing because it's time for medicine! And sometimes I am hungry. And thirsty. And I need to OMG PEE. And yet if I get up too fast I might fall in the floor and then I would pee in the carpet and that would do me NO GOOD. So I have to go slow and hope I don't overflow by accidently tangling in the sheets because I can't get MY LEGS TO WORK.

Okay. Free. Now to wobbbbble to the alarm to turn it off because if it was near the bed we would NOT get out of it. And to wobbbbble to the door like a pregnant lady because my bladder is THAT FULL. And to the bathroom.

Ahhhhhhhhhhhh...

Okay. Wash face to get all that nasty oil off because I have enough to run a car on my skin. Thank you, hormones. Wash hands. Rinse out mouth because I'm sure an army of bacteria is in there screaming, "THIS. IS. SPARTAAAA~"

Done.

Have fun with the wavy lines because when I move they're everywhere and so I get to imagine I'm tripping while I go to clear the dishwasher out. Then I say good bye to Dad, and go to take my pills and sit in the bed to check email and decide how strong I am to go to work.

I am strong enough. Stop being a baby.

Go to take a shower. Avoid shower for another thirty minutes by eating breakfast naked. Yes. Wander around getting clothing ready and other things ready, all while naked. Because other people are in bed and Dad's gone to work. Naked is fun.

Finally get into shower. Turn it o- WAHDOFERHGRHQIGRE- WHO LEFT THE SPRAYER ON?!

Anyway. Wash up. Wonder who made the delightful plastic bars that are in the wall that you use to hang on while you wash because they are amazing. Imagine they were inspired by monkeys, not weak people like you.

Ooh!

Get out, dry off, get dressed, all while panting and wobbling. Weeeeble~

PEP TALK in mirror about how YOU CAN DO IT.

Go into room, pack backpack. Look at cute dollies and wonder who you want to take today. Or a plushie. And some books or something to do on lunch if you don't go on a walk. Ponder this for longer than you should before you have to kiss Mom good bye, run out the door, and go to work. CURSE HUMANITY FOR NOT DRIVING\WALKING\WORKING\DOING THINGS AS GOOD AS YOU BECAUSE YOU ARE ILL AND YOU ARE STILL MORE AWESOME.

/END.

XD

I've had "normal" periods up until when I started birth control at sixteen. They were extremely painful (I would curl into a ball and cry and beg for pain killers), with clots, and I was diagnosed with 'dysmenorrea' (I might be spelling that wrong) and after three years of the pills not working, stopped taking them. Then I had periods for three days at a time (first day I would go through two heavy pads and then I would spot), 28 to 35 days a part, sometimes skipping months. I never kept track because I wasn't trying to get pregnant and I wasn't dating.

Earlier in the year I had a scare where after my period was over, I was assaulted by painful cramps right after sprinting to the car. I had to lay down and it was the worst I had ever felt. My guardian angels told me to "hurry, go to the bathroom and bear down as hard as you can!" and I heard two plops. I wiped and got up, and there were three two to three inch blood clots. It was bad. So I got back on birth control later in the year because I was tired of all the symptoms and clots. I now have regular periods, very light and with no pain for five days at a time.

So nothing too serious. I do have PCOS though, which means I have a busted left ovary that shoots out half-formed eggs that are not viable, and a right ovary that has somewhat of a chance of doing the same. I have had multiple cysts on the left to the point that we couldn't see the ovary beneath and one that was at least six cm in size, and for reference the average virgin adult womb is four cm in size. Yeah.

I've had convulsions twice that were like seizures. Once it was really bad when I was sick with a chronic infection, and the antibiotics weren't working and it was before I was to get my tonsils out.

I woke up in bed, threw my arms and legs out, and started convulsing. I couldn't move, couldn't talk, and all I could do is lay there and think "I hope I don't swallow my tongue or bite my lip or something!" while my body just tensed out as tight as it could and convulsed. It was horrible. It happened one more time, but after I got my tonsils out and got better, I haven't had one again.

I refer to it as 'seizures' but I was concious the entire time. I just couldn't move or talk. Then I passed out after it was over and didn't remember anything until the next morning.

I apologize for the gross nature of this post, BUT I think I'm having a problem with emptying my bladder. I had this symptom before- it was very acute. I almost had to go to the ER to get cathed because I felt like my bladder was going to burst. At the time, my bladder was totally full & when I sat down to use the bathroom- nothing happened. Very scary. I eventually worked it out without a hospital visit or a stroke and later learned that that episode may have been related to a big uterine fibroid that could have been blocking things. The radiologist surmised that this would be even more likely with a full bladder as it could have lopped over the uterus and cut off the ureter's capacity to empty- whatever. I had that embolized and things got better until recently.

I've been working out really hard & twice now I have totally wet my pants . Not just a dribble or two that happens with jumping jacks or other high impact activities, but a full out emptying. So embarassing! I've started wearing protection & have noticed almost nothing at the end of most of my classes. I'm guessing that I just have some days when I am unable to empty. I try and try before class, but little comes out. Then, I full-out sprint and BAM. The good news is my last timed mile was 7.50. The bad news is my shorts were soaked afterwards. Later that day, I just felt generally sick, really crampy in the abdominal area- couldn't empty my bladder. I went to bed with a heating pad & woke up several times in the night & finally emptied things out.

Does this sound autonomic as opposed to "garden variety" incontinence. I'm really thin & aside from having one pregnancy have no risk factors that predispose me to incontinence.

Any comment appreciated, especially from those of you who have to catheterize. Did it start like this?

Julie

Well, my mom started having that problem. She's in her mid-fifties and the doctor told her to stop running so hard because the muscles in her stomach were just no longer strong enough to hold her bladder in. She ignored him, and eventually she started tearing and bleeding. So whatever you do, be careful! She started walking and didn't have any problems, but it just wasn't the same for her.

I get to go to Dr. Salmon this Friday for the Chronic Sinus Infections again, yay~! I had this problem a couple years ago, when they took my tonsils and -his words- "they disintegrated" in his hands because they were so infected. So I have no idea why my head is so stuffed up with infection this time. As if I didn't have enough to deal with, with all the POTS stuff going on.

But oddly enough, when my body has to fight off an infection\cold\virus\something, it manages not to hurt all over or be as sick as usual, so I have to think that perhaps some of my issues are autoimmune related, because I have a heck of a lot more energy and get more done when I'm sick than when not. Even if I feel like utter poo under a car tire while doing it, I feel /better/ than when I'm well.

Go figure. So!

Here I am. At work. My nose is stuffy and hurting from all the tissues. My chest is beginning to hurt from the coughing and dripping into it, and my body is just dragged out from the inability to sleep from not breathing at night. But. I am not dizzy, I am not sore all over, and I am feeling more alert under the cold medicine than usual.

Hey, maybe I should get infected more often. XD

Me too. I started with extremely painful (and difficult to control!) IBS-D, continued onto awful GERD, then gradually turned into IBS-C. Now, my bowels barely move without oodles of Miralax. YOu are most certainly not alone.

Julie

I was using Miralax when I had problems with constipation but then I found warm Burdock Root tea helped a lot better and didn't cause any gas or pain. In case anyone wanted to try something natural. :3

Well? What food do you add to your salt intake? XD

I am currently eating a snack of a banana that has been sliced up and nicely salted so it glitters. Yummy~! I think cheese would have been good on this. Melted chedder maybe?

I'm so wierd. I like to cook odd things because I get too tired to eat full meals. XD

We should make an autonomic cookbook. What to eat when you're flat on your back! XD

Since I was a little kid, I had chest pain and tightness, and even pain when I tried to breathe in, all the way up to my arm. My mom used to think I was faking it so I never said anything and just dealt with it.

I always had milk fat intolerance and IBS issues since I was little. It's sorta like lactose intolerance, only I can eat cheese and milk and ice cream that is fat free with no problem. Because its the fat that causes me to get the poopies, not the lactose. :3

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I spent last night in bed after a lovely day at work moving computers here and there and then back over here and then there again! So I got a migraine! YAY. Even the hydrocodone didn't work. Then I got to go to bed and I woke up from a nosebleed that was gushing into my throat and I nearly choked on it.

But hey. Whatev. I'm here. XD [hugs]

Just keep truckin'. [backfire] O_O

We need t-shirts.

Unforuntately, I don't think they make t-shirts big enough to fit all the stuff we would need to explain autonomic dysfunction on it. XD

But yeah. I was trying to explain it to my sister last night and she was asking why didn't I just take a pill to fix it. LOL. If only it were that easy.

OMG. Thank you! I never really understood paresthesia because I got that so rarely or when I took my medications. But the hair crawling thing I get sometimes when I'm sleeping usually when I have heavy clothing on that touches the skin. That makes so much more sense now. XD I feel so silly.

I'm not itching all over, but I feel like I got my fine hair all over me and it's crawling. Or like spiders walking all over my body. This kept waking me up last night and it felt like a spider was in my nose! I blew it several times and all that came out was snot.

Is this autonomic related? I sometimes get allergies, but that usually is itching, and this was something weirder. The only thing I can think of is I got a shirt out of the closet that I hadn't worn in a few months, but these feelings were all over and only when I was trying to sleep.