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
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
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.
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)
Insulin Resistance Polycystic Ovarian Syndrome (IR PCOS)
Inappropriate Sinus Tachycardia (IST - which I believe is replaced by the POTS dx?)
Premenstrual Dysphoric Disorder (PMDD)
Migraines with and without aura
PACs and PVCs
Benign Paroxysmal Positional Vertigo (BPPV)
Allergies (seasonal, food, environment, some anaphylactic)
*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.
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.
Monday, April 6, 2015
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.
Friday, April 3, 2015
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.
Friday, February 20, 2015
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.
Monday, January 5, 2015
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.