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. 

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.

Positive Reactions To An Allergy Free Diet

It really is hard to juggle illnesses sometimes. I'm laying here, awake, at 1 AM scouring Paleo/allergen blogs for new recipes. It's so difficult to juggle multiple allergies. It's rare that I find a recipe that doesn't include any of my allergies that I'll eat. And when I do, it usually includes some kitchen appliance I don't have. Let's face it, having an autonomic disorder, I've never been one to spend hours in the kitchen. If Big Daddy cooked it was fast, if I cooked it was something I could throw together in minutes and go rest between checking or even microwave processed crap food or even take out. I don't have that luxury any more.

 

Granted I won't complain TOO much. The food is excellent and I've lost almost 30 pounds but it's exhausting. Sure I can rest while it's cooking but eating this way usually involves prep. I was cooking the other day and got severely dizzy after putting chicken in the oven. I'd used all my pre-made (by me, not store bought) sauce/glaze/whatever and I have to brush the chicken again halfway through cooking so I started making more. I didn't get more than the wet ingredients into the bowl and mixed before I had to throw it in the fridge and go lay down. Checked my blood pressure and it was low even AFTER the severe pre-syncope passed. Top was low 80's bottom was high 50's/low 60's (57 - 61). Yes, AFTER the vertigo passed. Then, when it was all said and done, I went to remove the chicken from the oven and burnt my wrist on the shelf. It didn't blister and Big Daddy bandaged me up with some gauze and burn cream but over 2 weeks later it still feels really dry and slightly discolored. It's fading though.

 

I've taken to doing the extensive prep work sitting down in a room other than my kitchen. If I'm feeling poorly, Big Daddy will even bring the ingredients to me. He's even done part himself quite a few times. But, he doesn't like cooking, doesn't think himself capable. He makes a mean breakfast sandwich, like to die for. But he's very much dependent on the simple way, boxed, pre-packaged. None of which I can eat. I can't even eat that scrumptious sandwich any more unless I'm prepared to face the upset.

 

I've found a few recipes that are delicious and allergen free (free of mine, anyway) but who wants to eat the same handful of recipes over and over again. They're good (delicious is too mild a word) but I need variety. I do fairly well avoiding soy (except ALL the vegan/dairy free substitutions I've read about, like the vegan butter, veganaise (vegan mayo) etc, at least the ones HERE, all contain soy). So I found recipes for dairy free, egg free, soy free butter, mayo, ranch, ceasar dressing, etc. Talk about awesome! Yea, not so much. I mean, the recipes claim it's as good as store bought allergen versions but they all need kitchen appliances I don't have, so for now I'll just have to wait.

 

I had to go re-read what I wrote last time to see how much I needed to update. I officially tested egg white, I'm allergic, officially tested dairy (cheese) and am allergic. Cheese is the cause of my acid reflux. When I'm off dairy I can even stop the prilosec. Mostly anyway. I had a few infrequent flares over the last two months but over all, if I avoid dairy I don't need it! Tomato I kind of cheated the test. I don't like tomatoes except mixed in with my taco soup recipe and since I'm off dairy, I can't eat that. So I've been sampling condiments containing tomato/tomato paste. Like ketchup, barbecue sauce, steak sauce, etc. By far it's the least reactive to date. I have a very minor reaction, I can barely tell. I still react but minor, I can ignore it mostly. But it kind of feels wrong. I got tired of mustard being the only condiment I could consume and I NEED (ok, seriously want) extras. I've always been the type to need sauce, gravy, condiments, the extras you know. In a way, I feel that since avoiding allergens helped me lose a bunch of weight that otherwise WOULD. NOT. come off, and how much better I feel (stomach and GERD wise at least), that I should avoid all the ones I react to. But on the other hand, it's a mild reaction and I'm going stir crazy without tomato based foods/extras. 

 

I gave in and ate pizza. Of course it gave me heartburn, my stomach felt angry and I feel as though I need to down a bunch of fiber. I had a really REALLY bad craving for pizza and chinese food for DAYS and didn't feel up to cooking for myself so I gave in and ate some. It was delicious but I felt like crud. I need some easy recipes that don't take a kitchen full of fancy appliances, 30+ minutes of prep and an hour or more to cook. Even the soup recipes take a long time or require multiple steps or leftovers (that took equally a long time to cook). I miss just being able to throw something on the stove or in the microwave and from start to finish be done in 30 minutes. But I like not feeling like crap. I need a new kitchen and a lifted bar stool/lounger or something. But who has that kind of money on one income. One day though.

 

In the meantime I guess I'll make do with what I have, what I can find, and try to incorporate previously untried foods. And hope I don't react.

 

Furthering on that, my dys is unaffected by my new diet. At all. My heart rate is still as wild and the dizziness too. I believe the severe near syncope episode from the other day had to do with switching from a beta blocker to a calcium channel blocker (so my allergist would take a more hands on approach to me). I quit taking it and my topamax. No frequent migraines (I can count the number I've had)! No GERD! Lots of weight loss! Obviously this diet is right for me. But my dys is still acting up. I'm going to try the CCB again now that the topamax is out of my system (both claim to lower blood pressure, the T alone never affected me, so I'm going to see how I do on JUST the CCB. Ok I've rambled enough. More later.

 

The picture is of my burn immediately after it happened.

 

I wonder what the etiquette is on posting recipes I've found online. Just link the original, post the recipe AND link the original, or what. I don't know, I'll figure something out. I have them all written down but I don't want to step on toes.