Friday, May 30, 2014

Rest In Paradise, Beautiful

I took Callie to the vet yesterday. She'd been acting weird for a few weeks, hiding/sleeping a lot so not as "around" to monitor/watch. Once she quit, I became concerned about her very quickly and yesterday I took her in. Turns out, Callie was (most likely) born with Feline Leukemia. There is no cure.

She had lost a lot of weight. Practically just bones with a fur coat. Now, mind you, she's always been on the skinnier side, but this. This was awful. She was barely eating and drinking. I'd try to entice her with a tin of tuna and she'd barely make a dent in the small cans (yesterday she probably only managed a teaspoon of tuna). I tried syringe feeding her a creamy-ish broth. She ate just a bit over a teaspoon full. I tried to hydrate her with the syringe. She ate the broth, and drank the water, and a teaspoon of tuna. That's all she had in 2 days before heading to the vet the last time. She couldn't control when or where she used the bathroom. She still just wanted to lay around and cuddle. She was dehydrated. She was anemic. She was sick. The vet agreed with my aunts assumption and asked if I'd consent to the tests for cbc and to see if she had leukemia.

If she hadn't been that sick with leukemia, she could've been saved. Unfortunately she did. And there was very little (nothing) that could be done. I couldn't make the decision to euthanize her right then so we brought her home and let her cuddle the whole time and sleep with me again last night.

I fought with myself the whole time. I knew she was really bad off. I knew I was only prolonging her suffering but I couldn't rationalize choosing to end her already short life. Even if everyone (including 2 vets) said it was the best option (as opposed to letting her get sicker and sicker and basically waste away). I couldn't rationalize the what ifs. What if she got better (she'd never get healthy, but what if), what if she could live for months. But the rational side of me said she didn't have months and whatever time she had left would be in suffering.

Then I was faced with the task of actually DOING it. How could I schedule something like that. How could I cope, knowing I'd never see her again, never watch her play with her catnip toys, never jump up on the counter to try and steal a bite of my food instead of hers, never go in the kitchen to find her lounging on top of the fridge or the pantry shelf, or on the heater or air conditioner. In a window. Never to complain about not even being able to pee with out a cuddly cat on my lap or a furry voyeur while I bathe. Never again to take a nap together or just cuddle. Nor would I get the amusement of seeing her pounce on Big Daddy's feet, run and jump and cling to his clothed leg, or follow underfoot when she wanted his attention. So many things she did, that she'd never do again. How could I take her, knowing it'd be the last time.

My face was the last she saw, my voice. My hands were the last to pet her, one last faint purr in the truck. My arms were the last to cuddle her. I hope she felt my love. I hope she knew how much I care.

But I'm broken. It hurts SO much. I cried so hard. So hard. I just can't believe she's gone.

Saturday, May 24, 2014

In Which Xyrem Makes Me Feel Like An Ass

This morning sucked. I think I'm going to stop taking Xyrem. I was hesitant to take it this whole time leading up to finally getting it prescribed because of the what if factor. You know, with kids. You never know when one will need you, when one will wake up sick. Or if the house caught on fire. Big Daddy can sleep through anything, and often does. It takes FOREVER to wake him.

I feel like an ass after my most recent night of sleep. Bad. Like to the point of tears. JSmiley has a cold and her doctor is closed until Tuesday so I've been giving her that natural cough med for 2 years and up and normally it works. Apparently it quit working after my second dose of Xyrem. I downloaded a sleep cycles app to see how my sleep goes and it has a record sound feature to see if you talk in your sleep. Well, apparently J started coughing about an hour to 1.5 hours after my last dose because I have multiple 6 second up to 20 second and one lasts more than a minute (not full of but featuring) of her coughing, crying for me and her pacy (which she'd obviously lost) for 20+ minutes off and on. The only two times I acknowledged her, once was a soothing shh and the second was to snap and tell her to stop and no (when she asked me to find her pacy). I get cranky when I'm tired and I don't remember any of this but I feel SOOO fucking bad that I'm crying because she was crying for me and I did nothing except get mad at her and slept through the other 19+ minutes. I know I was out of it, at 7+ I was loopy as crap and had to go back to sleep so at 5 when she needed me, I was useless. This is why I was so hesitant on taking this stupid medicine in the first place.

Big Daddy keeps telling me it's not my fault, that I can't help how I react (or don't) when I'm sleeping, and that's true. BUT I wouldn't have been completely out of it if it weren't for Xyrem. Prior to the 2nd dose, I woke up I believe twice in just under 3 hours. I was able to sooth J, etc. After that second dose, I wasn't able to respond when my baby needed me. When I woke up at like 7:30, 4 hours after my 2nd dose, I felt ridiculously loopy and had to lay back down and sleep for another 2 hours. I just don't get how 1 dose I'm up and lucid in under 3 hours and the next I'm out cold for 6. I know the literature says you'll need time after the 2nd dose but this is ridiculous. It's the same dose!

But I feel horrible. I know some parents cry it out but not me. My baby was sick and crying for her mother who was RIGHT THERE but not answering. I feel like the worlds biggest asshole. My baby needed me, and I was not there. What if she'd been puking. She's been coughing so hard she's gagging and occasionally puking. What if she'd puked or gagged and I slept through it. What if she couldn't clear her airway? What if the house caught on fire and I couldn't react. Big Daddy sleeps through 99.9% of all alarms. He'd never wake up. I can't risk taking this medicine, ESPECIALLY not while J is still sick. I feel it's not safe for me to take it with children in the house. It basically leaves BOTH of the adults in the house incapacitated. So everyone is vulnerable.

I'm glad it helps most people but so far, it's not looking like a long term thing for me. It does it's job so it works, it's almost 6 PM now and I'm just now feeling even the slightest bit tired, (no energy, I'm just not tired like normal) so it WORKS, but it's just too risky. I woke up with a headache, then cried for a while after listening to those recordings. I'm not tired but I feel like shit. I can't even think about this morning without tearing up.

Tuesday, May 20, 2014

Random rambles

Still 'truckin' along with the holter. I'm kind of meh about it at this point. I only push the button for big events or things that freak me out. I've decided to ask for the auto trigger. No maybe. Definitely. I don't know when I SHOULD or shouldn't push it and I'm not bothering if all the stuff I'm used to is within normal limit. So I want a long term 24/7 recorder that way it will get everything and my only anxiety will be whether or not my heart is going to act up.

Speaking of acting up. I've been working on this blog since last night. Do you know how HARD it is to mess with code on settings and features from a PHONE? Specifically a phone with a cracked touch screen? No? Ok well I won't bore you. Suffice it to say I did what I could with the patience I have and the rest can bite me. I edited some of the posts, just pictures and occasionally spacing (if I could, it wouldn't always let me). The pictures posted from my phone always show as "original size" as a default and apparently "original size" comes in two sizes. Microscopic and Ginormous. So it was messing with the layout and in turn, me. I fixed the ones visible on the front page (except the last one but hopefully this post will bump it to page 2).

I've been working on this blog post for days as well. If only I didn't have to expend any energy in order to be coherent and functional. I had the want to blog, just not the will to get it done. That happens more than I'd like and not just with blogging.

I had my appointment with Dr. S, my neuro. Overall it went well. I took my notebook with some info and rattled it off with examples and while she mentioned that the symptoms are broad and could be anything, it is all also symptoms of neuropathy. She mentioned it could also be some type of compression neuropathy, where if you compress a nerve it happens even to mild degrees. She said she couldn't remember the actual term but mentioned compression palsy (like Bells Palsy?) or something. Anyway, since I get my thyroid tested pretty much yearly and it's always normal she decided not to test that but did order a nerve (or muscle) biopsy and a nerve conduction test. Both are done there, by her, but only on Fridays so my tentative appointment is JULY 18!! They did say that they generally have cancellations so they doubted it'd take that long. They're confident that it'll be before then so they didn't even bother to print me a reminder (with my OK).

Dr. M's office (EP) is really annoying me. Last time I tried reaching them, it took me getting an attitude over voicemail to get a call back. This time, I've left 3 messages with all my info asking for an update because they told me to give it about 2 weeks and call since Vandy declined to take me (my insurance) and they had to figure it out but that it'd "slipped through the cracks". Hence ME having to call if I hadn't heard in 2 weeks. It's been over that and I called Thursday, Friday AND Monday (yesterday). During or before lunch. I know it's dependent on the doctors getting back to them and there's not many places to send me plus there's my stupid insurance but still. I'm not going to call today. I may just call twice a week. Hell maybe I should wait until I switch insurances but it'd still be under the same umbrella, just a different HMO. It's open enrollment but the different HMO wouldn't take over until July 1. I need to get that ball rolling too. I'm sick of the one I have but I have this fear that they'll be brats about covering things until the other takes over, and that I'll have the same issues as I currently do with everything needing prior authorization, denying things, not paying for some visits/procedures, and having to pay for some meds out of pocket. Granted, no insurance would be worse but this one is SO stressful.

Anyway, in closing. I have a gmail, twitter AND YouTube for this blog. The twitter is @MomWithDys. The YouTube will probably be even less regular than the twitter and blog but I wanted one blog specific for any Dysautonomia/health videos.

Saturday, May 10, 2014

Holter Monitor Panics

I'm still irritated with this monitor. I did manage to send in some readings the other night. I am HOPING this thing catches something. The tech I talked too knew exactly what I was describing when I mentioned symptoms and even further completed the description for me. I'm trying not to panic but I don't know how well I'm succeeding. I still don't know what qualifies as a "push me" moment. I don't want to record a bunch of nothings.
I didn't hear anything after sending in the recording and it had 2 full days so I'm panicking about that too but it sometimes takes a little bit to get messages to/from my EP. PLEASE don't let me down.
As a side note, I really hope it's worth it. These patches are making me itch like crazy and leaving lasting red blotches. The result of 7 days is pictured. I figure by the end of the month it's going to look 4 times worse. I sincerely hope it's worth it. It looks worse in real life too. :/

Sunday, May 4, 2014

I'm going crazy

I'm already irritated with this monitor. I've had it on for 2 days and I'm already going stir crazy. I *think* I caught something yesterday morning but I'm not sure. I'm sitting here constantly waiting on SOMETHING to happen so I can record it. I'm not even sure WHAT warrants recording. My normal tachy events usually just have the docs shrugging their shoulders and telling me it's normal, just fast. I can't MAKE it act up. I can't make it go bradycardic or start with the palps. I really want something called the auto trigger but even then who knows if my heart will cooperate. I'm going stark raving mad over here.
PLEASE let something happen. Multiple somethings preferably. PLEASE PLEASE PLEASE!