You Know. I Just Don't Get It.

You know. I'm just not sure how my luck could be THIS bad. Continuing exactly where I left off last time with "muscle spasms and musculoskeletal pain". Yea, no. The spasms continued. Bad, I'd be doubled over in pain, couldn't lay on certain sides, just. Agony. Nothing helped and if I moved at all the spasms started up. I didn't even make it to my 2 week wound check before calling my doctors office. My original wound check was the 26th. I made it to the 21st and just couldn't do it anymore. Went to the office and they discovered the top lead was out of place and was like, shocking me. Luckily I'm not fully pacer dependant. It wouldn't even "capture" with the interrogation. She would pace it and SHE could feel and see the muscle in my chest spasm so she turned the top lead off. My doctor wasn't even IN the office and they called him to tell him, he said to schedule a lead revision so they set that for January 8, 2018. I had to go get another xray. They said with the lead turned off, the spasms would stop and I'd be fine. The spasm didn't stop, even in the office after she turned it off but I brushed that off because she'd just caused the spasms so I thought maybe it was just from that. Nope. I went back December 29th. That was the fastest I'd ever been dismissed in my life. I was still having the spasms but she assured me the lead was off and it wasn't from the pacemaker and to just "keep doing what I was doing" and keep the appointment for the 8th.

Despite the pain never going away, I went home and waited on my appointment. On Thursday, January 4th, I tried to go through some totes of laundry, to get rid of the clothes that didn't fit and such. Breathing started to hurt. Pains were sharper. I told the girls I needed to go lay down and rest. Went upstairs and took a beta blocker, inhaler and laid down for a few minutes. Once the feeling "passed" I sat up and was messaging a friend and decided to order take out for the kids as I didn't feel well enough to cook. After I sent in the order I started having sharp throbbing, spasming pains in my right side, about rib area. I started feeling pre-syncope symptoms and my friend urged me to call my mother to come get me and take me to the ER. I called and by the time she answered, it was so bad all I could get out was "I need help" and a spasm gripped me so hard I screamed into the phone. There was no waiting on mom to come get me. She hung up and called an ambulance, mind you she was 30 minutes away in a different city and state (I live on the border of 2 states). I sent the kids a couple doors down (apartments) to my friend's and waited on paramedics. I passed out trying to walk from my room, I hit my head and had a bump on my head. Fire fighters showed up first and kept trying to convince me it was probably just kidney stones (never had one in my life but eh). Once I got to the ER and the nurse was triaging me in the room, I passed out again. As I was blacking out I could hear the nurse calling my name, asking if I could hear her and telling me to stay with her. It was so bad, the only position I wasn't in complete agony in, is laying on my right side. I laid in that position for EIGHT (8) hours. They did blood work, urine screening, and an x-ray and then tried to do a CT. It hurt so bad to lay on my back I was sobbing. They couldn't and/or wouldn't give me anything for the pain and I honestly didn't think I'd be able to lay flat. But it was the only way so I sucked it up and tried. Moving from the CT bed back to the gurney, my IV came out. Once I was on the bed I looked down and there was blood everywhere. The doctor came in after a while and just stood in the door, kinda just leaning against the wall staring at me and finally he spoke. He said "You're the type of person that weird stuff always seems to happen to aren't you?" I couldn't do much speaking I was in so much pain so I just nodded furiously.

Turns out, I had a hemothorax and pleural effusion. They used both terms but I'm not sure exactly what the difference is. My lung wasn't quite collapsed but it was compressed severely. All of which was causing the spasms and shortness of breath. Yay me I'm being admitted and they're going to do a thoracentesis. But, there were no beds on the floors so I get to stay in the ER, but they were putting me in a hospital bed instead of an ER bed (much more comfortable). Then they called my heart doctor to let them know what was going on and they decided to just transfer me to that city since they were going to do the surgery to revise the lead in 4 days and they would just do the thoracentesis there. Got a "nice" ambulance ride 30-45 minutes to that hospital and got to sit in the ER there until a few hours later when they took me back. I had zero pain management (not even a Tylenol), no food for 25 hours, no water or ice after midnight. I get that they were doing a procedure for the no food but 25 hours is excessive. Not to mention the no pain management. They knew I had something bad but hospital one gave me nothing even after asking and being told they would. Hospital 2 said they would too but then at the last minute decided not to because the anesthesiologist who was doing the thoracentesis didn't want to risk an interaction. They drained 500 ml (a half a liter) of bloody fluid from the space under/around my right lung and still had more in there. They said it was too thick to drain any more. Today I had a further 500 ml drained because it had yet to resolve but that's skipping ahead. They kept me over night and the next day they cleared me to go home if I wanted to and to come back 2 days later for the pacemaker lead revision. I felt mostly better, had laid on one side for 8 hours so I was sore and missing my kids and just wanted to go home. So I did. I told them before I left that I couldn't lay on my left side without pain and shortness of breath. They gave me the option to stay if I wanted to, but I didn't. That night, I discovered that I couldn't lean over/bend forward without struggling to breathe. That was Saturday. By Sunday evening, I had a fever of 102. YAY. Not. Plus that meant they wouldn't do the surgery the following morning. Off to the ER at hospital number 2 I go. The first hospital had said I had a UTI, except cultures were negative. The second test said I had crystals in my urine indicative of a kidney stone. OMG I saved the stupid draft and exited because it froze and it lost like, 2 paragraphs. UGH. 

Let me see if I can type all this back out. Anyway, where was I. Oh yea, kidney stone. Didn't have one of those either. Nothing was culturing as positive. They put me on vancomycin and meropenem. The vanc is supposed to only be an hour or so twice a day but I started reacting to it. Nothing BAD just itching. They gave me Benadryl, Zofran and slowed the drip infusion down from 200ml per hour to 100ml per hour. That was taking roughly 5 hours and then they would switch to the meropenem. Someone somewhere decided that was too bad or annoying or whatever so they slowed it down even further to 41.7ml per hour. I'm guessing they mathed it out and that got close to a full 24 hours with the exception of the time they had me on meropenem. I'm not sure if it's just how they did it, like if it's a known thing or if it's just a me thing but the vancomycin started to lock up my veins like that. They had to change the IV site daily. My veins would be rock hard for several INCHES on both sides of the IV site, the muscle and skin around it would be swollen, hard, red and warm. They had to change IV site so many times and draw blood from so many places, my arms, both of them, were black and blue. One time they had to call a nurse down from another floor to change the IV. Another nurse told me they would have to get anesthesiology if they had to change it again. And a third told me the next step would probably be a central or PICC line. They were drawing blood and stuff daily, maybe twice a day. Culturing blood, they cultured the fluid they drained, they cultured urine. Nothing came back/grew an infection. So they had no idea why I had a fever. They had told me that I wouldn't be able to have the revision surgery until I was fever free for 24-48 hours but I'm assuming since they couldn't find an infection they decided I was ok to proceed.  During prep, they even shaved my bikini line in case they had to go in through that artery. They found an infected hair/boil that they lanced after the lead revision. They seemed excited like maybe it wasn't the only one and was the cause of the fever. Negative ghost rider. I get them occasionally when I shave because my hair is so thick all over. They removed the pointy lead and put in one that apparently looks more Christmas tree shaped that wont puncture the wall of my heart. I woke up mid surgery or at least at the end. Conscious sedation is a weird thing. One minute I'm either asleep or oblivious, the next I'm wide awake in the cath lab while they play around on the other side of the drapes. They sent the lead to the lab to be cultured as well, and again. No growth. No infection.

Also, there's this. Non sustained v-tach.

I still didn't get to go home the next day like I had for the prior surgery. They hadn't found an infection but my inflammation levels were extremely elevated and my hemoglobin kept dropping. In fact, I was 1 blood draw away from receiving a blood transfusion. I wasn't looking forward to that. The doctor came in and was explaining the risks and such to me and I stopped him and asked if he remembered who he was talking to and if he explained the risks, they'd likely happen. Naturally though he had to explain but LUCKILY, once my levels reached 7.2, they turned around (with the help of iron supplements) and started climbing slowly again so I got to skip that procedure. There were a couple days where I wasn't really doing anything but laying in the hospital bed taking the pills I already take (with the edition of iron and something for inflammation. I kinda liked that doctor. I was a bit amused about how ... stumped he was. He admitted he had no idea what was wrong with me, that he'd never seen anything like it, that he was scratching his head and had to brain storm with other doctors. But he was afraid to release me. I'm not sure if it was just he wanted to know what was going on, if he was afraid something would happen once I was release and he'd be liable or what it was. It wasn't until his day off that his colleague discharged me that evening. THAT doctor I did NOT like. He's the one who discharged me to go home following the thoracentesis, which I don't hold against him, he gave me the option to stay if I wanted to, however, he messed with my meds. And I'm fairly certain he's the ignoramus who put me on a low sodium diet (despite my diet being regular and having an rx for 3G of sodium pills per day in addition to a regular diet). He told me to stop my blood pressure medicine all together, he knocked my beta blocker down from 60 mg (where it's been for probably a year) down to 10 mg, which does nothing, let me tell you, and I can't remember what all else. Like, just stuck his hand in the hat, pulled something out and started messing with it. He wasn't even a damn cardiologist, just a hospitalist. But I digress. While in the hospital, I developed pleurisy from the pleural effusion. I had the typical follow up for wound check and they set me up an appointment to see my primary care doctor to follow up with the pleural effusion and pleurisy. I'm still pissed at the device clinic and doctors office for ignoring me and letting it get that far. This is why I prefer NOT to work with nurse practitioners or anyone not intimately acquainted with my disorders. Or me for that matter. Most of my doctors, even my cardiologist, would have known to take me seriously but I wasn't seeing him yet, just device clinic and nurse practitioners. So in a way, I blame them. Sure they had know way of knowing I was that bad off but I don't go to the doctor until I can't take it any more. Ever. And even then half the time I have to be talked into it. Whatever. Lesson learned.

Anyway, at my follow up with my primary care doctor a week later, I still had pleurisy and the cough so she gave me more cough meds, ordered some repeat lab work and then set a follow up appointment for 3 months out. Ha. The lab results came back elevated just like in the hospital so they changed the follow up to 1 month instead of 3. I made it 2 weeks. I was taking double the prescribed dose of cough meds (which is an option if the first dose doesn't work, I just did it without asking) plus rotating with 2 over the counter cough and cold meds, plus going through whole bags of cough drops and using a rescue inhaler. Some days I couldn't even get out of bed. She ordered a repeat chest x-ray which I didn't get to for 4 days, after my follow up with my cardiologist, who was concerned by the numbers as well, and ordered some autoimmune testing because of which tests were elevated. Those tests came back normal but the x-ray showed a "mild to moderate effusion" still and BOTH doctors called me to set up with pulmonology. 

So they got me into pulmonology, who diagnosed me with asthma for starters. I've suspected it for a while but it wasn't severe enough for me to pursue it (see again with the I don't go to the doctor unless I have to or for a follow up/my regularly scheduled appointments). His assistant and a resident came in first to kind of do the beginnings, take everything down, consult, etc. We talked for a while and then she goes "Bare with me for just a second, I have an idea that I'd be willing to bet money on if I was a betting woman"... and pulls up google. After reading for a few minutes, she goes "yep, I think you have something called Churg-Strauss Syndrome..." Apparently just last year, she'd been given a case report of a woman who had a lot of the same things happen with the effusions and stuff like that, her test results were negative but she still received the diagnosis. It's also called  Eosinophilic Granulomatosis with Polyangiitis, or EGPA. I guess I'll find out more at my follow up. Anyway, he ordered a CT scan to see if the abnormal x-ray was from fluid or if it were, perhaps, scarring. CT scan proved it was still fluid so another thoracentesis was ordered. An additional 500 ml of fluid was removed. I tried to take a picture of that too, but they denied my request. Walking away from the hospital that time I already feel a LOT better. My cough is nearly gone, my breathing is a bit easier. I hope I'm finally on the mend. They mentioned a possibility of me going to rheumatology next but who knows. Anyway, I am not sure if this was rambling or not, I got side tracked when half of the blog post poofed but eh. I probably forgot something but I'll remember eventually if I did. 

Bionic Woman

I'm home now. Well, I'm at my moms and have been since probably lunch time on Thursday but boy has this been a wild ride. Check in time was 6:30 AM. I am not a morning person. At all. Stayed with mom the night before and bathed with the hibiclense the night before and the morning of. Got to the hospital, checked in and waited in the cath lab waiting room with mom for probably 20 minutes when the nurse came and got me. She put the IV right above my thumb. They don't like putting it in the bends for comfort and they wanted to put it on the side with the device. They also had me pee in a cup to check for pregnancy. Then they put on numerous sticky patches that they used and some they didn't (ECG) in case one set/site fails, plus the defibrillator patches on my front and back. Once in the lab I scooted over onto the bed/table thing and they put the arm tables and then put arm restraints on me so I didn't move or grab the doctors or anything. Then they gave me versed and fentanyl for conscious sedation. That's the last thing I remember. Mom said I was awake when she got back to recovery but I don't remember anything.

The pain meds they gave me and the zofran barely took the edge off so I was getting morphine every 2 hours and as such I spent much of my hospital stay nauseated and asleep. For some reason pain meds make me ill. Either my sugar drops or my bp or I get super nauseated. It's no fun. I'd brought my phone and headphones with hulu, a word search, sudoku, everything. All I did was sleep. I had the TV on in the room but the volume all the way down. I have so many marks on me it isn't funny. The IV stopped working in my thumb so all in all I was poked 4 times with 2 IVs. My night nurse was super nice and handsome. Figures you see nice looking people when you look like a trash heap.

Anyway, when I got home I still slept for like 2 days off and on. Today is the first day I haven't slept for hours during the day too. Today is also the first day I woke up and felt half way human. I took the big main bandage off like they said, I wonder how long until the steristrips will take. The area between the bandages to my right shoulder is bruised, the IV sites are bruised. But I'm finally on the mend. I did however discover I've been having (or developed after the surgery) non sustained ventricular tachycardia. The nurse ran in and checked on me but said it was only 5 beats. I'm not sure what that means.

Then not last night but the night before I started running a low grade fever, chest pain and shortness of breath etc. I went to the ER because I feared infection or blood clot (familu history). My d-dimer was positive so I had to have a CT scan which was clear as well as the chest xray was normal. They said it was just musculoskeletal pain. Yesterday my back locked up and I spent the day on the couch but today I feel much better. I just wonder if and when its working and what it feels like.

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.

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.

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.

Autumn Thorns ARC Review

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

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.

Finally My Update From Vanderbilt

Well I suppose it is time for an update of sorts. I did go to Vandy but ... it was a giant fiasco. The day before my appointments they called MULTIPLE times. First was to tell me they DON'T have the medicine to perform one of the tests at my appointment time but would later that day or the next day. So, I could either try to squeeze it in, or extend my trip an extra day at the last minute. Then, someone else called and said my insurance wouldn't pay for anything and I'd have to pay several hundred up front for some of the tests but that one I could sign a waver and pay later. Again, last minute. Thanks for telling me I have basically LESS THAN 24 hours to come up with a few hundred dollars. Or opt out of some/most of the tests that had been ordered for 8 (EIGHT) months. THEN I get a call saying they can't figure out WHO ordered 2 of the tests. That neither Dr. B nor my EP had ordered them. So 8 months prior, some unknown entity, set up tests with no authorization and no one caught it until the day before. Keep in mind, all of this is going to hell before I had even left my house.

So the next day I go to my first appointment, check in and do what amounts to a poor mans tilt, valsalva etc. At like 9 AM. My next appointment was after 2. We go to lunch, walk around Vandy then walk around the mall. Head back and I'm sitting in the hall outside of the office where they have two tables and some chairs designated for patients. I was overheating and dizzy just relaxing and charging my phone. Around 1:15 or so (an hour before my appointment), Dr. Bs nurse, A, calls my name over the intercom. I go in and no one is there. So then she calls my phone and snottily informs me that my name had been called *several* times already. Firstly, I'm AT the door looking for you,  secondly, no you haven't, at least not this way because I was just out in the hall, not on the other side of the building, and 3rd, my appointment isn't for another HOUR. What if I'd been at lunch or with my husband giving blood or still at the bloody mall 20 minutes away?  So we get back and she's doing the basic stuff nurses do prior to doctors coming in and rattling on about trying to help speed everything up so we're not waiting all day. And then we sit in that room for over an hour waiting. You know, until past my appointment time. I'd have preferred to pass the time in the cool open hall. The best part of the entire trip (really the only good part) was the hour we spent with Dr. B working up a plan of action. If it weren't for that, the ENTIRE trip would have been a gigantic waste of time.

I don't know if they are just super unorganized or what (which is scary considering how high profile they are) but even AFTER all that, the clinic in OHIO called me to set up a visit, stating in exact words that A, Dr. B's nurse (by name) had sent out my file and a referral and that I needed to set up an appointment. NO ONE authorized that. Not Dr. B, not Vandy, not me, not my EP, NO ONE. When I enquired about it (because who am I to go against doctors orders if they feel I need to go, but no one had mentioned it to me so I figured I'd double check), Dr. B says it wasn't anyone there that it must have been my doctor. Even though I plainly stated the clinic said it was A (not a common name, either).

I left a review and the woman called once, on a Saturday while I was out, and never called back. And the number she called from was one of those disposal lines no one answers, just uses to call out.

All in all, I'd rate them 1 star. Simply because of Dr. Bs vast knowledge on this subject, the time he spent with us, and a treatment plan. If it weren't for that, Vandy would've gotten a negative/zero stars review from me. Their only saving grace was the doctor. Which that was the point of the trip so it ended well enough. Basically, I'd recommend Dr. B, but NEVER their clinic or Vandy. Maybe if he moved clinics. And changed staff.

Never. Again.

Hashimoto's

So. I definitely have Hashimoto's. I haven't researched nearly as much as I'd like but I just got the definite today. Apparently my repeat labs came back the same. So now I get to add a new diagnosis and a new medicine. My levels were so elevated, my ENT started me on 112mcg. The pharmacist kept asking if I'd been on it before, if I'd had it at a different pharmacy before etc because the dose (for starting) was so high. After I explained that I have Hashimoto's and that my antibodies are SEVERELY elevated he said he felt much better. He said it should/could take about 3 weeks before I notice a difference. Ironically that's when Nurse A told me to come back to repeat the lab work (to see if the dose is helping).

The pharmacist mentioned it would help with energy and metabolism. I'm hoping that in conjuction to the insulin resistance treatment I'll feel somewhat better. Sure I'm not expecting healthy but maybe a step up from blah. And maybe a 50+ pound weight loss. I hope. I guess we will see. Now, off to research.

Another Day, Another Disorder

I'm so ... lost. I don't think that is the word I'm looking for but it's the closest I can think of. I actually started this post a week ago, after my actual appointment but the depression was just too much. I had a follow up from the last holter/event monitor I had plus I've had an auto trigger for at least 2 weeks. This monitor goes off all day every day and even at night. Sleeping, sitting, laying, standing, cooking, cleaning, everything. Whether it be for tachycardia or whatever else (I'm assuming more PACs and PVCs). I SWEAR I caught two bouts of bradycardia last time, the tech reviewing it even confirmed that while most of one strip was 75 bpm it dipped to 47. However my EP said there was nothing below 75 that it may have been artifact if anything. There's no abnormal rhythm, nothing he can actively treat. So again I'm hearing the "There's nothing we can do right now" speech. It's disheartening to say the least. I don't understand why not only did the pulse oximeter show bradycardia but the tech reviewing the strip ALSO said it dipped. If it were one vs the other ok, but both? Idk. And they haven't posted the report on the app for me to check.

I spent all day after my appointment really depressed. Like, more depressed than I've ever been over my health. That day was pretty low. I just feel like I'm at the end of the rope. Is Vanderbilt really my last option? Dr. M said on the off chance they can't help me he might have some idea, that he always has ideas but that doesn't mean they're always good ideas. That's not very reassuring. But again, it is sobering to think that you're out of options except to suffer. It makes me even more anxious and nervous for the Vanderbilt tests. What if they can't help? It's not a nice thought.

To top it off I was so upset I took the monitor off and when I finally decided to put it back on, my neighbors phone was shut off. If it's not back on soon I'm just going to take it back. The monitor fills up within 10 minutes to 2 hours. Easily.

In other news, I emailed my ENT over my previous thyroid lab results since they hadn't been posted (they use another lab instead of one in the group so it doesn't get posted on the app). They mailed me the results (normal) but I knew from research that the specific labs they ran could be normal and there STILL be something wrong. I have no earthly idea WHY someone would only run certain labs if there is a likelihood that it'll be "normal" even if you have a disorder. I emailed and asked for the second set that can show despite the other normals and guess what. They came back abnormal. They kept saying they normally don't run the second set if the first came back normal. Ever. The only reason they did is because I asked and pressed my point. My thyroid antibodies came back SO elevated, they re-ran all the tests with some extras. My antibodies came back at 2,340. The normal range is in the hundreds at max. I picked up the slip and asked why those would be soo far elevated if the others were normal and instead of saying it was a fluke or some abnormalities of the test they said either Hashimoto's Thyroiditis or Graves' Disease. Depending on this follow up set of labs. However, since the REST of my labs were normal, *they* likely won't treat it. Perhaps my primary care. Which is arguably a joke. I go to them for menial stuff or referrals. I'm still waiting on the lab results from the second set. She said I'd probably have them yesterday but no call. Then again, I'm pretty sure I got blood work for the previous tests on a Wednesday and didn't get a call until the following Tuesday. I'll give it until next Tuesday evening (same time frame) and then call/email for Wednesday. I believe it's going to show I have Hashimoto's but again. I'm not sure what anyone will do. Will it be yet another sorry for your health but you just have to deal? Guess we'll see.

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.

In which, I need a vacation.

12/18/14
Looks like I'm just going to accumulate blog posts since WiFi isn't working.  I'll just mass post later. Today was a meh day. Big Daddy's mother is in ICU with pneumonia and infection in her blood. It's awful seeing her struggle like that. On top of that it's just been an over all stressful week. Well,  really it's been a stressful month/few months. I need a vacation or something. I can see why some people legitimately NEED drugs. I swear, if I drank, I'd probably be drunk. Or medicated but getting needed medications is pretty much like pulling teeth. I don't even try. I probably need to get back into therapy but that will probably be in the new year.

My insurance finally got reinstated (accidentally missed some paperwork when the whole family had bronchitis and when I called them they said it was all up to date, yea, no. I sent the paperwork in November and it just got reinstated today or yesterday so I had a bunch of appointments to schedule that I'd had to cancel (see previous post, 3 were scheduled, 2 I had to schedule and I have to make dental appointments for all 3 kids. I'm probably forgetting something. Ugh.

Speaking of appointments, I probably need to find my wallet. I only carry it when I have appointments so it kind of gets lost between them. Which is probably not the smartest thing to do considering it's got all our insurance cards, our social security cards and my ID/drivers license plus my birth certificate. Oops. Oh well, it's in here somewhere.

I don't think I mentioned it but I finally got my wisdom teeth removed! All four plus the molar the dentist (not the same one) left a cavity in. I was in so much pain last year and again this year. This year however the bottom right wisdom tooth (the impacted one that did the most damage) got accessed twice. Of course my insurance only covers emergency dental which yay it was covered. I'm so glad they are gone. SO glad. So now my migraines are simply migraines, not a result of my teeth. JSmiley needs some dental work and SDiva does as well. They've been talking braces for months (probably over a year). Even more so now because of the fall she had this summer.

I'm so exhausted though. I've been up and a bit more active. Just a bit, but it's still exhausting. The thought of all those appointments back to back is daunting. Appointments drain me. I don't know. I just feel so blah. I'll be back later.