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.

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.
 

I Babble When I'm Tired

I'll go ahead and apologize in advanced. My phone updated late last night and everything is off. Autocorrect isn't functioning properly so it's taking me longer to type (touch screen) and it updated the key board so it's twice as bad. I'll probably have tons more errors than usual or something. I hate the update, hated the phone, got it how I like it then it spazzed out because I wouldn't download the update.

On the plus side, blogger finally let me change my time zone so it SHOULD be correct now. It's 3 AM now and I'm about to go to sleep. Big Daddy and I watched a movie and of course the baby stayed up too. I can't really help that, both of or schedules are flipped. If I can get her to sleep at a decent hour I may take some melatonin. Occasionally should be ok, it didn't mess with me until I took it every day for a week or more.

I'm frustrated though, when I got diagnosed with NCS in February, there weren't many graphics or sites for it. A VAST majority focus more on POTS. Now that I have a narcolepsy diagnosis, I can't find hardly ANYTHING. At least nothing that isn't a joke or low resolution. And there aren't many sites or even fb pages/groups. And apparently narcolepsy affects 1 in every 2000 people. If there are 8 billion people in the world (and I did my math correctly), 4 million have narcolepsy. (1 in 2000, 8 billion divided by 2000? Maybe? I hate math.) But the number of groups/pages/graphics are FAAAAR less than NCS. Ugh. Ok, I'm really tired so I'll quit babbling. Perhaps I'll have a real entry later.