Saturday, November 25, 2017

So Close, Yet So Far

3.5 weeks left until my pacemaker surgery. I haven't even begun to plan for it. Ok well I've done all kinds of planing but haven't actually done anything. I've talked to some family and friends about childcare and the trip to/from the hospital but nothing is set in stone. And I've started noting what to pack in my hospital bag as I'll be staying over night as well as pre-hospital prep. I guess planing is a decent first step. So far I haven't been too afraid or anxious. I kinda wish it'd hurry but it's creeping. Creeping and looming on the horizon. I'm not sure how I'm going to manage recovery as a single mom with kids dependent on me. Granted the older 2 girls can help so I hope it won't be too hard and it'll be right at Christmas break so I won't have to get up at 6 AM every morning. I can do this.


Sunday, November 12, 2017

It's Been A While

So I figured it'd been a minute, probably time to update. God's know enough has happened in the last 2 years. 

6 months after my last post, my husband walked out on us. Suffice it to say it had been going in that direction anyway but the events after that post were snowballing out of control and the avalanche that followed, I'm still picking up the pieces. He had issues that he needed to work through and he still does but he's working on them. I guess. I have the children 98% of the time based upon his actions but it is what it is. Our divorce should be final soon. 

I was denied disability and the appeals because I don't always know I've passed out and I don't always report them to my cardio (lesson learned) AND because I have a penchant for saying I'm ok at check ups instead of detailing everything that's plagued me between check ups. Again, lesson learned. I started volunteering with a non-profit and may be hired soon. Possibly. 

I've had more nasty episodes thanks to my handy dandy Neurocardiogenic Syncope. The most recent being a week (and a day) ago. My heart stopped (paused) again and I quit breathing. Two RNs happened to be there (I was getting food with the girls), one of which has POTS. The POTSy RN even began compressions before I came to. The first thing I can clearly remember was her asking me if I have POTS. I hit my head and had a very mild (but annoying) concussion. I'd had a dizzy spell/very brief blackout earlier like I'd had in the past that wound up with skinned knees, followed by some severe vertigo that I'd thought had passed. I'd become complacent with the NCS as it hasn't been too active lately. I suppose in a way it was luck or fate though, having those nurses there, having one of them be a POTSy. I'm not sure if I'd have gotten the same results had it not happened like that and had I not gone to the ER (twice, once for the syncope/asystole, once for the concussion since they never even checked the night before). But it did and has. Which leads me to the most recent. 

I'm getting a pacemaker next month. I'm not sure if I should say "finally" or not but it's been looming over the horizon since my first tilt test/visit back when I was like 22. I'm 28 now and in 1 month I'll be preparing for surgery. I'm not terrified. Yet. Or maybe that's the anxiety meds. Or maybe I'm kinda numb to it since it's been 18 years. Or maybe it just hasn't sunk in (my appointment was Friday, followup with my cardio after the spell last week, and that's when we scheduled it). Right now I'm in preparation/obsession/research mode. 28 with a pacemaker. Damn.


Thursday, September 10, 2015

Panic

I feel like I'm on the verge of a full blown panic attack. I haven't been this close to one in years. My chest is tight and I feel on the brink of hyperventilation despite trying to keep my breathing slow and even. I even called this past week after a particularly horrible trip to an asshole doctor seemed to set off PTSD-esq reactions in me. I can't stop thinking about that and dwelling and now I don't want to see any of my doctors because my anxiety sky rockets and this shit with Big Daddy's ex-job (long story). I'm done adulting. I can't. I'm about to break and I can't even get in to a counselor until sometime in October but I can't NOT say that I'm on the verge of freaking out and I can't just post this to my fb.

Wednesday, August 19, 2015

Autumn Thorns ARC Review

Autumn Thorns (Whisper Hollow, #1)Autumn Thorns by Yasmine Galenorn
My rating: 5 of 5 stars

I received an ARC for Autumn Thorns, due to be released on October 27, 2015 this past weekend.

Autumn Thorns is book one in Yasmine's newest Whisper Hollow series. It stars Kerris Fellwater, a spirit shaman whose family have been in charge of the dead/spirits for generations. Having read Yasmine's other series (repeatedly), I can confidently say that this series is looking to be yet another A+ series. Kerris is a smart, no-nonsense taking, STRONG character who lives in a very mystical town where the town itself seems to be alive and waiting. This world is a bit more dark and sinister than say, Otherworld and the Indigo Court series, but in a good way. Secrets abound in Whisper Hollow and things are not always as they appear. Truths stay hidden for years before being drug to the surface by the dead, rocking the lives of those still living, down to their very foundation. Who they are, or who they thought they were.

I'm currently RE-reading this book for the second time this week. The first time, I read in under 24 hours, staying up past 2 AM because I just could not wait to see what happened next. This time I'm reading it a bit more slowly so that I can savor the book. I can not wait until book 2 comes out next year so that I can once again immerse myself in the world of Whipser Hollows and see what else Kerris and her friends get into next! I strongly recommend this book to any and all readers of this genre, if you're a returning fan of Yasmine's as I am, I believe you will enjoy this book and I hope new fans enjoy it as well.

View all my reviews

Sunday, August 2, 2015

SDiva The Accident Prone Diva

Post 4 in one day.

SDiva is ... somewhat accident prone. A broken leg at 2, 4 displaced teeth last summer, and THIS summer, she almost lost the tips of 2 fingers. All 3 of our children were up on the mountain with my mom, one of their friends up there was having a birthday party the next day and they were all grilling out that day. It was the Saturday immediately before Memorial Day. 2 guys werr driving a tractor/mower around the yard picking up sticks when one of the guys had the bright idea to let the kids ride on the back. The operator was against it but guy#2 stated he'd walk beside it and keep an eye on it.
My mom just happened to look over and notice SDiva's face contorted in pain and horror, screaming for help. By that time, she took off running  (it's the mountain, lots of land/big yards) and everyone else noticed and took off after her. A good 40 yards or more. Her hand had slipped into the PTO wench and it kept tightening on her ring and pinky finger. Any pressure applied to the deck they were standing on, put pressure on her fingers. Mom had to hold her up (she almost passed out) while everyone else leaned over trying to get her loose. For 20 minutes. She was stuck for over 20 minutes, begging my mom to just cut her fingers off and free her. Finally she gets freed and my mom calls 911. Then she calls me. Heart stopping moment. I looked down and saw mom's name on my phone display. I figured it was one or more of the kids calling to say hi and tell me about their day. As soon as I answered, I knew something was wrong. Just, my mom's voice was ... there's no accurate way to describe it. Raw and panicked maybe. The first words out of her mouth were "Now don't freak out, everyone is ok. But SDiva's been hurt." I froze. I can't describe how bad it feels being an HOUR and a HALF away from your kid who is hurt/sick, and not being able to do anything. The hospital  (Rural #1) is 2 HOURS from my house, and an hour from hers. Even driving to meet the ambulance, and us doing the speed limit, the ambulance beat us to the hospital by ONLY 15 minutes. What. The. Fuck. I KNOW for a fact they could have sent a chopper. Hell, the asshole dispatcher, didn't even send the ambulance for over FIFTEEN minutes (hence why mom drove to meet the ambulance).

Once there, they just wanted to chop off the tips of her fingers. Didn't even want to TRY to save them. Told me half of thr tip of her pinky had been completely amputated at an angle. One finger, the tip was split to the top/first knuckle (in that same diagonal way the bone was split), the other, the skin was no longer anchored/attached to the same knuckle. They irrigated the one (non split/detached finger and the other), stitched the skin in place on the detached one and did nothing to the split/pinky finger then wrapped both. And said a surgeon would see her on Monday. At which point, she'd probably lose the tips. Except Monday was Memorial day and the surgeon DEFINITELY wouldn't come in then. So call the office on Tuesday. Fuck you dude. All of you. The next day (it was midnight by the time we dropped mom off) I took her to Big City Niswonger's Children’s Hospital (neighboring city to Bigger City Hospital that my Papaw is in) and the doctor's promise to call surgeons and ask permission to take pictures in case surgeon says no to try to get them in. Surgeon comes in, tells me she did NOT lose any bone. Bone was in fact in split finger. The bone was PRESENT and they wanted to just chop her fingers and MISSED that bone was present on an xray. Same xray surgeon read and saw the bone. Surgeon asks when she last ate (2 hours prior, supper at 5) because she was going to surgery that night. Since she'd ate they put her in the system, left to get food, came back, admitted her and took her to surgery EARLY despite it not being 6 hours since she'd ate because it was that emergent. She had surgery at 11 PM on Sunday, the eve of Memorial Day. Yet Rural Surgeon, refused to come in, because "it can wait". All my rage and hate. All of it. Just. Fuck any and all surgeons who can see a small child in need or EMERGENT, albeit non-life saving, surgery, and shrug and say let them suffer until normal business hours. Fuck you and your bunk Hippocratic Oath. All of them need to lose their licenses (and you can bet I complained EACH time).

She lost her fingernails (they're growing back!) BUT she still has her WHOLE fingers (and to date, 26 stitches to tell her friends about - including her lip). Thanks ENTIRELY to Dr. S. SOMETIMES doctors aren't worth the paper it took to print out their credentials, some are worth it all.

Hospital Fiascos and Broken Hips

I'm guessing I kept all these updates bottled inside and everything just keeps building and building and now I'm word vomiting all over blogger. Every time I mean to update I'm just too tired to get log in and type it out. Which I really have no excuse considering it stays logged in on my phone and I'm pretty fast, but I'm faster on a computer, which I do not currently have. I get all psyched up to blog then fall flat. Especially if the idea comes at night because by then I'm all blah.

Anyway. Back to the issue at hand. My papaw is in the hospital. He had been falling quite a bit all of a sudden and that last fall, broke his hip. Again, major fiasco (seems all the hospitals are majorly dropping the ball). The first hospital in Rural City gave him morphine and eventually sent him an hour away to another slightly busy city in neighboring state. En route, his pain meds wear off and the EMTs refuse to give more stating that the hospital will when they get there (which I know they carry it, because they gave my daughter morphine (next blog post) in the ambulance. They get to the next hospital and the staff loses his info packet with his med list etc. They page the surgeon and deny him food/water because obvious but they won't/can't even give him pain meds until a doc signs off. For 2 hours an 82 year old war veteran begs for a cup of water (a total of 12 hours at this point with no fluids) or pain meds while staff claim to be paging the admitting surgeon. The charge nurse comes up with a single dose of morphine to last "until the doctor comes" that she had to "beg for" but still no fluids "because he's having surgery". The surgeon NEVER SHOWS so the call up a regular doctor to order meds and stuff and finally let him eat since it's obvious the surgeon won't show (so that's 4 hospitals locally that surgeons drop the ball here, my local hospital (teeth fiasco circa summer 2014 for SDiva), Rural Hospital #1 (from blog post pending for SDiva summer 2015 - she's trying to hasten my demise), Rural Hospital #2 - same city as #1 - for Papaw, this bigger city hospital (that's FOUR HOSPITALS within 2 hours of each other that dropped the ball). 1 cup of juice and dinner. Then NPO after midnight, for a possible surgery he's not on the books for since the surgeon never showed. And the surgeon whose name is on his chart "we don't have a surgeon here by that name". Um, it's on his chart. We didn't write it. So where did that name come from? Anyway, the next day, he's put on the books for 5 PM. So 24 hours with no fluid except 1 cup of juice, so far, and NPO after midnight, suddenly no morning surgery but since he IS having surgery (that evening) he must remain NPO. One meal and one cup of juice. For 36 hours. Not even fluids by IV. Goes to surgery for a 10 minute procedure, then spends 3 hours in recovery. The nurse has to be tracked down after surgery team sends family back to the orthopedic floor (from surgery waiting) and says he's groggy after the initial hour, so it'll be half an hour to an hour. Then for 2 hours they're waiting on transport. When he FINALLY gets to the floor, the nurse from recovery says the problem was not grogginess, that his oxygen was low and he wouldn't send him nor would a doctor sign off. So which nurse was telling the truth? The ones who didn't do anything right and had to be tracked down for updates? Or the other one. Then as soon as they hook him back up to everything, his blood pressure crashes (68/42 manual). I'm pretty sure I'M not even lucid that low and I'm USED to hypotension. They run blood, lactated ringers and sodium chloride. As soon as I get almost home (45 minutes) my mom texts me that they've called a code c (cardiac team) and that his heart rate is in the low 40s, they're pushing atropine and epinephrine and have the crash cart on stand by, and transfer him to CCU. On an oxygen mask. I drop Big Daddy and the kids off at midnight and head back and stay until 3:30. His sats are still off (the RT switches him to lower oxygen and a smaller mask) but they run blood work to see if he needs more blood and do a chest xray (clear), I head back home when his bp stabilizes. The next day he greatly improves. He is up, eating, talking, basically fine. Granted he's a sick old man, stage 3 kidney disease, hypertension, diabetes, etc but he was his normal self.

They move him BACK to the orthopedic floor, and within 4 hours he's transferred out because his oxygen is back in the mid 80s, he's disoriented, choking on food and combative. That is NOT how he was hours earlier. He was fine in CCU. Now they think he's had a possible stroke and may have pneumonia and a UTI. I know it's supposed to be normal but what the ever loving fuck man.

Every Day Health Update

Once I finally got in to see my EP (took forever, had to wait BEYOND my originally scheduled appointment for my rescheduled one (as with all my reschedules there, it was because THEY had to reschedule, not me) to start on the recommendations from Vandy. I'd called a couple times asking if he would call something in for me so I could be trying it and then if it was going well/not helping, by the time we got to my appointment, I'd have already TRIED something on the list. No dice. And this summer got hot. Too hot, too fast. Big Daddy bought me a Frogg Togg Chilly Towel (the one linked). I love it. I even activated it once with super hot water and it still got really cool. It is definitely worth the price. I'm not a huge fan of the material it uses but I guess that's how it works? You can definitely tell it's not a "towel" or plain fabric but overall, when I'm sweating, dizzy and my heart rate is going crazy, I can deal with the rubbary feel. My only complaints are really cosmetic, the feel and the one I got has a zebra print and the print faded. I liked it so much I gushed to Big Daddy and he had his boss go out and buy several for the paving crews (obviously not the pink ones). They are so handy, especially this summer where I was basically unmedicated for my Dysautonomia. I was really struggling. (Disclaimer: this is not an official review, just me gushing, I did not receive anything for gushing).

Finally got into my appointment and Dr. M called in a couple of the meds on the list, Propranolol and Aldomet. It's not perfect but it helps a LOT more than all the other meds I've tried over the years. I like propranolol MUCH better than atenolol. It helps so much more. Watching my heart rate be somewhat NORMAL and not having to struggle AS much while doing things is awesome. I'm not so sure how affective the other has been but my heart rate is loving it.

My eyes have been bothering me more and more for a while now, I may or may not have mentioned it, but I went to an opthamologist several weeks ago. My vision is perfect/near perfect. 20/15 in one eye and 20/20 in the other. I'm thinking it would've been 20/15 in both if not for the blurring/photosensitivity. (As I'm typing this in a darkened room, I can barely see, so please excuse typos). I believe this one is brought about by an aura preceeding a migraine so I've taken meds to try and head it off. The Opthamologist, Dr. C, said a lot of it is dryness which could be caused by Sjogren's (which at that point, I had not been tested for). She told me to try *polarized* sunglasses instead of regular which helps a bit, and increase my use of eye drops from PRN to no less than 3x per day. Which also helps. Then she put something called a Punctal Plug in my left tear duct to try and prolong how long I hold my natural tears. If I see improvement she'll do the right side. I'm not sure how I feel yet (it's only been 2 days so far). She also ran the panel for Sjogren's because none of my other doctors would since they don't treat it. And mentioned having some kind of adrenal test. She referred me to an internist to coordinate all my doctors/diagnosis since problems like this arise. All these disorders are treated by different doctors and they have comorbid conditions that need yet another doctor. I have to basically fill out a request to see if one of the internists will accept me as a patient.

So lets do a run through.
Neurocardiogenic Syncope (NCS)
Hyperadrenergic Postural Orthostatic Tachycardia Syndrome (Hyper POTS)
Hashimoto's Thyroiditis
Insulin Resistance Polycystic Ovarian Syndrome (IR PCOS)
Inappropriate Sinus Tachycardia  (IST - which I believe is replaced by the POTS dx?)
Premenstrual Dysphoric Disorder (PMDD)
Narcolepsy
Migraines with and without aura
PACs and PVCs
Neuropathy
Benign Paroxysmal Positional Vertigo  (BPPV)
Allergies  (seasonal, food, environment, some anaphylactic)
Anxiety
Depression

Possibly:
MCAD - ENT won't test for it because "treatment is the same as what we're currently doing"
Adrenal problems *
Sjogren's  (waiting on blood test results)
☆ Possibly other mental issues

*Adrenal problems also makes since because HyperADRENERGIC POTS, plus lots of Hashi patients also have adrenal fatigue. But again, none of my current doctors want to test for it.

Just keep swimming.