Back Online Finally

So I finally got a new cell phone. I love it. I'm so overwhelmed though so I've been kind of blah lately. I still haven't even tried to get everything off of my old phone (via Bluetooth and slowly). Haven't set up all my apps, or even fully set up the phone.

Still trucking along with the insulin resistance. I've had my meds increased once so far. My original numbers were 38 for insulin and second set was 43. The normal range is 3-28 I believe is what he said. I think I'm going to try more dieting WITH the meds. I don't know if the meds alone are helping, not much if anything but maybe a better diet will help. I don't know whether to try "clean eating", "whole 30" or go back to mainly "paleo". I'm overwhelmed there too. Expecially since 80% of the recipes either require things I don't have (juicer, mixer, processor, etc) plus "good food" is twice as expensive as crappy food, and it's hard enough as it is. I just need to figure this out. I'm heavier now than I've been in THREE years (as in, I weigh what I weighed the week after I gave birth for the third time). I wasn't even this heavy when I went paleo in 2013. It's seriously depressing.

Also speaking of depressing and annoying, I'm wearing yet ANOTHER 30 day holter. Fun right? Not. I'm not entirely sure what he's looking for this time. He's trying to figure out if I'll need a pacemaker sooner than later since my NCS is accompanied by asystole. He wants to know if it drops with near syncope too. I'm not very confident in these tests and I'm always afraid of hearing "nothing is wrong" ...well, nothing *else* since we know some things ARE wrong. I just don't know. I feel like Murphy's law is on the prowl. Then again I usually do. Especially considering every time I feel even remotely bad, I either second guess if it's worth it, or something messes up. Take yesterday for instance. Took the girls to Chuck E Cheese (D had a birthday party to attend and we decided to take all, pay for is/ours and just let her take a gift/play with friends). Felt a bit dizzy. Went to a store after, tachycardia just up walking around, no hills, stairs or strenuous activity. I'd thought I'd cleared the monitor but as soon as I recorded the one, it started incessantly beeping at me. Which meant either it hasn't cleared and was full (it was) or the battery was dead (brand new) or the damn thing was broken (it happens). So great. Here I am, feeling like crud with NO way to clear/send it, and no way to keep recording. Naturally, today, when it's all fresh and empty, my NCS isn't going crazy. Granted I feel like blah, but not button worthy.

See why I hate these things? I asked for the auto trigger but he said it'd drive me crazy. What he MIGHT do,  depending on this one's turn out,  is do the implanted one. Just like the auto trigger except implanted and won't beep constantly. The only downside I see there, other than Murphy of course, is that it's implanted. I'm not keen on surgery and scars but meh. If it helps, I'll take it.

Based on that he may or may not do a pace maker. I don't know. I feel like it's not frequent enough so it'll be ignored or isn't worth it, but on the flip side, my heart DOES stop. (Omg half my post got erased! I'll try to rewrite it later >.> )

Later turned into days later. Everything I've read said a pause of 3 seconds qualifies, mine is over triple that! But I don't know about bradycardia. I know it HAS gotten low, it's dipped in my sleep but I don't know how much. I tried getting my neurologists nurse to send me the report from my sleep study to see if it showed up on that or not.

Here lately my health is completely opposite. I don't know what to do. My heart rate is still bananas, I haven't caught any brady but the other morning when I woke up it was 60. It's rarely ever that low as a norm. I've taken to keeping a pulse oximeter near me or on for short periods. My oxygen has also been traveling down. No clue what's up with that. Yesterday my hr was 176 just walking up my stairs. It was 154 just sitting in a chair. I called in some recordings to the holter monitor place and the tech who reviewed it even requested I do a "follow up" recording and call back in 15 minutes. Which I did. I'm guessing it was still concerning because he told me if it kept on to call back with further recordings immediately. I did take the 170s recording but haven't sent it in yet. My hearts been mostly behaving today which is surprising seeings as how I have a sinus cold. Yay me. Usually THAT will set off the tachycardia so that nothing can help it.

I think I'm going to basically beg for an ablation. I know it doesn't work on everyone but I just can't anymore. I know he said he'd gladly do it if he was doing a pacer but, though I'd love one if it helps, I don't see it happening. And I can't take it. This non stop tachycardia is killing me. Plus now my oxygen is dipping gradually. Plus I looked at my echo results from 2011 and I'm concerned. Long story short, I hope this month passes pretty fast. I want to get back to my doctor. More later.

Oh, ps. I ordered more compression stockings and a med alert bracelet so I'm stalking those.

Feeling Discontented

You know, I know I frequently rail against the injustices we get by being treated like we're imagining things by all these doctors, but I legitimately feel like I'm losing it. I feel like the more I research, the more I find, the more testing I want, that not only will my doctors think I'm a hypochondriac, but that I'm turning into one. I just wish I could submit a vial of blood and have some convenient print out tell me for sure one way or another, exactly what all is and isn't wrong with me. All if this research and mad check*check*check omg CHECK on a check list. Research another disease/disorder and repeat. There's some that I have about half the symptoms, some where I have about 98% of the symptoms or even all. But I feel like, if I go to my doctors with a list of disorders and information, they'll think I've certifiably lost it. And who knows, at this point, maybe I have. Dealing with all of this is trying, at best.

I'm not even convinced I have ALL of them, I'd just like them to be ruled out (and of course anything else I possibly DO have, found). I'm just sick of being sick and everyone ignoring it because I've already got a million diagnoses. I just want to KNOW, definitively, what exactly is wrong with me. I know that's normal, but I seriously feel like dealing with all of this is driving me mad. I just want answers. I know I'll never be 100% healthy but at least maybe then I could treat more and figure out more causes to some of the symptoms of unknown origin. Yes, Vanderbilt is a step in the right direction but I don't believe it's enough.

Not Content

Pretty sure I'm going to ask/beg/demand for more. I've got half a million doctors appointments next year and not knowing is driving me batty. I want more testing. I want more of my issues to have an answer/diagnosis. I want ALL the testing but I have no clue where to begin. I know I can add Restless Leg Syndrome (last night was BAD), but what about the rest. There are SO many that go hand in hand with POTS/NCS/Dysautonomia that I'm either symptomatic for or just plain don't know anything about. I need to research.

Last night was so bad. Coming back from the mountain on Christmas irritated my legs and last night I just couldn't deal. I couldn't find any relief. No matter where I moved my legs. On top of that, my right arm is having more numbness and tingling issues (worse than the other limbs). I'm so over all of this. I feel like I need to sleep for a week to let my body heal. I've definitely been doing WAY too much this winter.

Tis The Season

Of course I'm behind the camera this year. Happy Holidays/Merry Christmas!

More From J

Christmas is over finally over. JSmiley is doing a little better. Still coughing. Not sure how much better. She had her follow up on Tuesday, apparently by then she had a double ear infection. The ER peds doc initially missed it, the doc on peds spotted it and the ER peds doc came up and agreed. By Tuesday,her ped looked and said there was infection in both ears but no redness/inflammation. She still had a wheeze and tightness on Tuesday. We were home by 5 on Sunday with oral antibiotics, oral steroids and a box of albuterol and nebulizer.

Tuesday he said since this is the 2nd time she's needed breathing treatments (she had bronchitis that wouldn't go away when she was 1 and needed treatments since her O2 sats dropped into the high 80s then too) that they usually diagnose asthma after 3 attacks so one more. He said it most likely is asthma though. Right now they're still calling it reactive airway. It generally only happens so far when she's really sick but may have to do treatments before major activity. She didn't get any refills on the albuterol but is on a 10 day course of antibiotics with a second 10 day course waiting at the pharmacy in case the first isn't enough. Plus she has 2x/day inhaled steroids. Kind of like an asthma inhaler, only for the nebulizer. She has a 6 month supply but it's confusing me. The doc said "Indefinitely, until she's better." Which is it? If she's better by new years, discontinue? Keep going through winter? Keep going indefinitely, at least for a few years? She's already annoyed with it, even though she does so well. I'm assuming when she's old enough, if needed, it'll go from the nebulizer to an actual inhaler. Right now she doesn't really get some "inhale and hold" instructions. And if she does, getting her to follow bodily instructions when she doesn't want to is pointless. The nebulizer is much more effective at the moment.

I'll probably take her in for a recheck in a week to see if the tightness is resolved and the infection is gone. Especially if that cough isn't resolved. Anyway. I made a collage of pics from all of this since I can't effectively post multiple.

Top Row:
1. J's stats after the first breathing treatment. Her hr wasn't affected by it, it was up from respiratory distress (it was 140 here but was higher periodically). One dose of albuterol and only 92.
2. She doesn't LOOK all that bad here. She's had most of her tests, IV, blood work, etc. This is either right before or right after xray.
3. All tests done, one breathing treatment, waiting on test results. She looked so peaceful. However, she curls her fingers in sleep so her pulseox kept losing the feed and alarming. I barely got to sit down.
Middle Row:
1. Despite a breathing treatment, her oxygen starts dropping again so they give her some oxygen to help. She HATES the cannula. HATES. I had to hold it out of her nose so it blew in but the tube wasn't in. At one point I even taped it to her pacy. Which yes, she's 3. But it was a comfort for her while being used as a pincushion.
2. Exhausted after a long (half) day in the ER, finally in Pediatrics.
3. Feeling much better the next day.
Bottom Row:
1. Playing toys between breathing treatments.
2. Someone gets to go home!
3. A pro at breathing treatments

It sucks when it's your child who is sick.

I still need that vacation. I've been at the ER since 7 AM. Not for me, for JSmiley. Yesterday or the day before she started out with a mild cough, that irritated her throat (I'm not sure if you could classify it as a legitimate sore throat as it only bothered her when she coughed). Last night she seemed to be a little off with her breathing but settled down and wasn't acting weird,  just coughing and such. Still jumping, running, playing. You know, normal hyper 3 year old behavior. Woke up around 4:30 and she was burning up and visibly breathing weird. Likeshe had to work for it. Gave her meds (for the fever) and took a bath and got dressed. She still seemed MOSTLY fine, though a bit clingy. She asked for juice and was watching a cartoon with Big Daddy but I just didn't feel right not addressing her breathing so I drove her to the ER sans bath.

In triage, they had trouble getting her vitals (except temp, it was down again) so they paged respiratory therapy and the doctor. RT gave her a breathing treatment first,  I think before the doctor even made it in. Her sats pre-neb were 90-92 sometimes dipping into the mid/high 80s. During the neb, they rose briefly to 97 but as soon as the albuteral was done,  it dropped to 94. She was also breathing hard/fast. About 40 respirations. Still sounded bad and sats wouldn't rise. They gave her an IV,  drew 3 vials of blood (no sign of infections), 2 throat swabs (RSV and Flu - both negative) and 2 xrays ("clear" - no visible pneumonia). Less than 3 hours later it was dropping repeatedly to 86-88 so they tried oxygen (hint, 3 year old don't like nasal cannulas, you have to get creative). All of the test results were fine but clearly something is wrong. They decided to admit her and added a "continuous breathing treatment " for an hour. That plus oxygen brought it up but as soon as the breathing treatment stopped and the oxygen was moved, dropped. They considered transferring her to a bigger hospital 30ish minutes away but with the minimal improvement they said they'd keep her. They gave her steroids and plus the oxygen, for a while it stayed pretty consistent in the 97-98 range.

She got saline, rocephin and potassium (with dextrose and saline) plus 2 more breathing treatments. She sounds a million times better, though I can still hear her wheezing from halfway across the room and her sats are still in the low 90s. As long as it's above 90 they say they won't give her more oxygen though which is bs. A friend of mine is an RT in NY and she's pretty outraged but apparently the staff here keep brushing it off. I will definitely be having more words with some doctors tomorrow. The nurses are just following orders. Though I'm not thrilled with the little bit of info they are forthcoming with. Just like I don't believe this is asthma, which they keep insisting, despite following it up with "but they can't/won't diagnose before 5". I just wish I knew what was wrong and how to help. She clearly doesn't feel well. Cough, sore throat, ear infection, plus whatever is messing with her lungs/breathing.

She's been such a trooper, even with the IV.  The pulseox annoys her so she keeps messing with it but the only thing she really flipped out on was the nasal cannula. She did not want that ANYWHERE near her nose/face. Anyway, its almost time for round 5 with the albuteral so, more later. I have WIFI here so I can post all day long (as long as my tablet is charged). Hopefully tomorrow brings health and clarity.

I'd post pics but they're all on my cell phone so maybe tomorrow. She's such a fighter but it's all so cute and pitiful. I just want to snuggle and love on her. She's so touched out though. Anyway. Adios.

Food Allergies Suck

12/19/14
Apparently I need to further restrict my diet. Not necessarily to lose weight but because I legitimately NEED to. Big Daddy made me an omelet for dinner two nights in a row (at my request). Dairy free though I'm sure cheese and sour cream would have made it delicious. Obviously I'm still missing most dairy. I realize that I am better off without it and dairy free substitutions are generally just as good (add a splash of lemon juice to df cream cheese, my mini blueberry bagels with "cream cheese" - rare - tastes just like the dairy version, and almond milk is yum). But anyway. Yesterday, I had GU issues but mild and brushed it off. Today. O. M. G. WHY on top of everything else.