Where oh where has Sara been?

I get lots of messages from people asking where I've been, how is my health, how am I doing (besides reading), how are things? And for the most part you'll get the, "Oh... you know... the same..." and I'm rather vague.  

Because honestly? I really don't know how I am doing. I have had a really chaotic year in terms of health stuff, doctor visits, lab work, and crying in my car and/or closet (depending on the day). Let us start with November 2021 though, because I feel like the latest series of events kind of kicked off around then. 

Since my AFE, I have had a series of awful medical things happen and I know I used to do a good job at updating things here, but honestly, it feels like it is coming at me fast and furious all of the time and I really don't know my ass from my elbow some days. It's not so much that I am getting diagnosed with new things, but the things that I have been diagnosed with are changing, getting worse, or kind of morphing into something else, but nobody is actually sure so we wait. What I have consistently dealt with though are things that I could narrow down to a few categories: 

• Fatigue: Guys. When I say fatigue, I'm not talking about the, "I wish I got more/better sleep, I'm really dragging ass and could use a nap" kind of tired. I'm talking about the kind of tired where you're totally fine and functioning and all of a sudden (literally), you feel like the Energizer Bunny as his batteries die down. It truly is like everything around me turns into slow motion, things sound far away or like I'm in a tunnel/under water, and I truly feel like if I do not lay down RIGHT NOW and sleep, I am going to collapse. As it turns out, I actually will fall down and sleep. Why? Nobody knows! 
• Vomiting: Why people choose to vomit meals daily, maybe even multiple times a day, I will never understand. I go in random stretches of feeling totally fine, I can eat like a normal person and things will be OK to being a person who walks around her house carrying a red bucket and never leaves the house without a plastic Target bag (or ten) because I will puke out of nowhere. Think about food because I'm hungry? Puke. Try to eat a meal? Puke. Have to go pee? Puke. Want to take a shower? Puke. Answer the phone? Puke. It literally phases nobody in my house anymore, mom just pukes and we plan around the what ifs. I'm not even puking food anymore, it's bile, and then whatever the thicker, almost pudding like bile that comes after regular bile? Whatever that is, it is absolutely disgusting, never in my life have I ever experienced that and once that starts, then I'm in real trouble because I'm going to pass out. In other news, if anyone is looking for a good gift idea for me, a really good kneeling pad for next to the toilet would be awesome. Currently I'm balling up towels and that's not really doing it. The only thing I know I can always keep down are Wheat Thins. I will almost always have Wheat Thins in my purse (like a whole ass box or bag from the box), on side tables, next to my bed, literally everywhere. You know how an alcoholic would hide alcohol? That is me... just with Wheat Thins. 
• Dizziness/Double Vision/Everything is a Merry-Go-Round: Honestly, this is the most unpredictable, and easily the worst, thing that I'm dealing with. Sure, fatigue sucks but I can take a nap and usually feel functional. Vomiting is not awesome, but I've got a bucket and Wheat Thins, come at me, bro. Dizziness though? You are actually totally fucked. There are medications of course, none of which work so I don't even bother. I could be totally fine and just like that, I feel like I'm on the fastest Tilt-A-Whirl, there is two (sometimes three) of things, and I am so damn dizzy. I look like an actual drunk college girl in 5 inch heels on a cobblestone street in the dark. It has made leaving the house near impossible. If I'm going to, it's a whole routine to do before, a whole series of things to bring just in case, and having several back up plans. I haven't gone to a store alone in... well over a year. Someone has to be with me because there is a good chance I will fall or definitely need to hang onto someone. If I get dizzy, I can chug a ton of water like I've never had water before, eat a bunch of salty snacks, and wait. If that's not working, I chug a ton of water and then eat a bunch of sugary snacks, and wait. Usually one of those works. If it doesn't, I have to go home immediately and go to sleep. If I'm alone by chance? I'm locking my car doors, opening windows slightly and taking a nap and hoping for the best. I'm not even kidding. 

Now, you're asking yourself, "Sara- what the hell, don't you ask a doctor?!", to which I say oh child. Seriously. I have been to primary, endocrinology, gastroenterology, cardiology, pulmonology, rheumatology, nephrology, neurology, the ER countless times, accupuncturist, balance and movement therapy, physical therapy, opthamology, and any weirdo idea anyone has come up with? Done it. All of it. No answers. Everyone just points at each other, meanwhile I'm in the middle eating Wheat Thins and looking like I've been on meth for a week straight. 

The worst though, was in November. I had been complaining that it was truly just getting worse and nobody really understood what I was saying. Until the day I passed out in the shower without warning, for 45 minutes, only to be woken up by Lucy holding my cell phone and asking if I want to call daddy. I had no idea what the hell happened, or how, and I was so disorientated. 

I know I hit my back, shoulder, and arm on the water spout going down, and I think I hit my head on the side of the tub, and probably bottom. I woke up to the shower being off (so I know something hit the little button thing that you push down to fill the tub) and the water hitting my forehead, so how I didn't drown, I have no idea. That's what my back looked like right after and that was an AWFUL bruise for at least a month. 

I had bruises like this in weird spots, so under my arms, one on the back of my neck, one on the side of my boob (but on the other side of my body, so that was odd), a bad one on my knee, the top of my foot, and god knows my head hurt like hell for days. Pretty much everyone was in agreement that I had a concussion for sure. Nobody can agree on why this would have happened. I didn't feel lightheaded or anything before, I truly have no memory of going down. So that was fun. 

Since then though, the dizziness and vision issues have only gotten worse. I rarely drive. If I do, please know that I have had enough water to accomodate three camels for a year and my bladder is probably going to burst. I've eaten an exact amount, I have snacks and more water, I have a bag to puke in, and I have a list of people to call should I get into trouble and can't drive. I can tell well in advance if I'm going to be able to drive myself to an appointment or not, and Matt will leave work to take me. I no longer walk outside because I get dizzy and disoriented. 

Which means that I have literally become a recluse. I'm lonely and sick. I don't go places, I don't have people come over because nobody wants to hang with someone who can't shower alone, pukes all the time, and literally only has Wheat Thins to eat. My house is a wreck, I have no energy, I'm exhausted, and I'm frustrated. I think I've narrowed it down to either endocrinology or gastroenterology at this point. I'm shit out of luck with endo because the doctor I've had since day one literally just died, which explains why I can't get a call back or reply message on the portal to save my life. Gastro FINALLY agreed to see me this Friday, so I'm just crossing fingers something good happens. 

The last straw at this point for me was yesterday. Yesterday I took Jackson to a doctor appointment. Got so damn dizzy so him and I just watched weirdos walking around the Hillside area for an hour while I chugged water and ate snacks. I got him to school and I just felt... not great. I was going to lay down but thought, I better pee first, you know? I pee, and I feel like I am actually being stabbed with pins and needles all across my lower abdomen and I have just a dull, but not comfortable, pain in my lower left side. I was at the sink and I remember thinking, "holy shit, I think I'm going to pass out, this hurts so bad", and I have a pretty high threshold for pain by now. So somehow I get to floor and decided to crawl out and into the living room to lay on the couch. 

Fast forward almost an hour later, I wake up, flat on my damn back, spread out like a starfish in my dining room (which is like half-way between the bathroom and the living room), and I have no fucking idea how I ended up like that. I decide I need to get to the couch, so I was able to stand up, I walked the maybe five feet to the couch, and I curl up in a ball and sleep for another hour. Now, nevermind I had apparently taken the dog out and he's outside and my back door is WIDE FUCKING OPEN. Hi, just come murder me. Have some Wheat Thins on the way out. 

By this point it is almost 3, so I know kids are coming home soon, so I get the dog, butt scoot my way down the basement stairs to my room, get into bed and slept for almost three hours. I was able to go back to bed around 11 at night, and I feel fine today. I'm tired but that's about it, same as every day. 

EXPLAIN THAT. 

Blood pressure is all over the place. Beats per minute? I could go as low as 40 and high as 120something one time and I was literally sitting on the couch doing nothing. I feel fine either way, no different. I keep telling Matt that if this is how the rest of my life is, this is pretty damn bleak because I am in misery right now. 

Concerts, Birthdays, the Lake, and more!

I feel like I am doing such a terrible job at keeping you updated on life and what I'm doing. I just forget about it and then I have so many things I could talk about, but I get overwhelmed and do none of it. So that's where I'm at. 

I'm going to be all over the place with this because I can't get my brain to put things in order like a normal person, so here we are.  

Most recently the big kids and I went to see Florence + the Machine this last week and it was a GREAT concert. I've seen Florence once before and this one was just as good, but I'm glad Olivia and Jackson were able to go, too. 

Truly, if you ever have the opportunity to see her live, you need to absolutely do it. Her voice is incredible and it almost feels like a religious experience, which sounds corny, but it's true. 

Dance has started up again, and it is nice to get back into the swing of things. Lucy is all about it, and Olivia seems to be happy to get back into a routine. 

Over the week that Pep and Lu were at grandma and grandpa's, Matt and I refreshed their room. We painted, deep cleaned, sorted toys, and moved furniture. It was exhausting but they absolutely loved it. Can they keep it clean? Yeah.... no. 

Lucy turned six in August, and it was a tough one. I don't know why it is still tough to get through it, but it is and it is so frustrating. 

We got a new kitten, which we've named Pickles. The other pets tolerate him, and the kids love him. He's super cute and has like four polka dots on his side/back and it's so cute. 

I'm pretty sure he's part feral or something because he is WILD. He wants to be petted until you do and then he bites you and tries to fight you. He's kind of an asshole. A cute one, but still. 

School started for everyone, and the best part of fall is watching Olivia in the marching band. This year Jackson is doing it too because he's in high school now. 

It's been pretty fun, and we've been bringing Pep and Lu until half-timeish, but Lucy has yet to make it that long. She usually falls asleep. Pep would go all night if you let her, but she also wants to run wild and eat all the snacks. 

With everything going on, I've been super overwhelemed with life, so this desk is basically a representation of my brain. Try sorting that out. 

Then we had Olivia's birthday, she's officially 17 now. We spent the day hanging out on Lake Superior in a couple of spots and it was such a nice day. Windy as hell, but the lake was so pretty. 

Matt also had a birthday, and he got a matching tattoo to mine. I got my Dory way back in 2017 as a representation of my AFE and just general struggle but survival, too. Matt got Marlin because Marlin always finds Dory, is always helping her through life no matter how hard it is. He's just a really great husband, and no matter what happens in life, I know he has my back. He's always there to help me and I'm never floating out there alone and lost. I love it, but I love him, too. He's pretty great. <3 

That's a solid round up of life right now. It's busy, it's messy, and we're doing it. 

Is it even summer?

I hate that it feels like we aren't even in summer. I mean, it does because nobody is in school, but it also doesn't because the weather has been crap and we have no vacation. I keep thinking maybe I should have just planned a vacation, even though we definitely cannot afford it, because not having something on the calendar is just depressing. I can't even lounge on my deck and read because it has either been cold and windy, or just plain rainy. I can't even garden because honestly, my plants look like garbage because they think we're still at the end of May, so they aren't doing a dang thing. 

Olivia has been busy working two jobs, so we honestly almost never see her. Jackson has been doing Upward Bound (which is like a college prep program), so he has been living in college dorms Monday-Friday for six weeks, so we hardly see him. I know this is part of them growing up, but man... I understand now when parents say they miss their kids as they grow up. They drive me nuts sometimes, but I do like having them here, even if it just means they are in the house somewhere. 

Penelope decided she wanted to get her ears pierced, so Matt took her to do just that. She truly believes she has real diamonds in her ears, so we're letting her think that because she thinks she's hot shit and it's adorable. 

I signed the littles up for summer school, so we walk there and back each day. Because of the holiday, there is no summer school this whole week, but honestly... I'm not sure if I'm even going to muster the energy to go back next week. They don't seem to be die hard about going and it's basically a glorified childcare thing, so it seems dumb. I remember when Olivia and Jackson were in elementary school, there used to be fun stuff happening in summer school. They went on field trips, had zoo animals come to school, had fun games and craft things going on, etc. and none of that happens anymore. It's kind of lame. 

We've only had like three days warm enough to swim in the pool, so that stinks. Honestly I hope we have an outrageous string of hot days so the kids get use out of it otherwise I'll feel like we spent all that money filling it up for nothing. This is also the year that Lucy can touch the bottom and I don't know why, but that made me super sad when she told me. 

We've also been going to the library like twice a week. We are flying through books in this house. Penelope finished all of the Diary of a Wimpy Kid books and is now onto Dog Man, which she thinks are hilarious. Olivia read Stephen King's Insomnia, which is like 800 pages or something, in a day and a half. I can't really complain though, because at least I have a couple of kids who really like reading. 

Lucy turns six on August 1, and she asks me how many days is it at least three times every day. Needless to say, she is ridiculously excited about it. I'm working my way down into the depressive slump I find myself in every year right around then. It's hard to know if my low mood is because of stuff going on or just my body's response to our trauma anniversary. I do know that I am getting so weary. I haven't felt like this in a couple of years, but once again, I find myself at the point where I don't know why the hell I'm hanging on so hard. I finally told Matt about a week ago that if my health doesn't improve, and this is just how it's going to be, I really can't do it. I cannot do it for the rest of my life, and that's just a truth I think we all know but havne't acknowledged yet. I feel like I've done all of the things, I've seen all of the people, I have checked everything off on every list I've been given and still.... I feel no better and seem to just steadily get worse. I just don't have it in me to do this forever. It's just depressing. 

In the meantime though, summer marches on. I just keep going through every day but there is never a time where I don't just feel completely exhausted. 

Life just keeps happening in October.

I keep saying it feels like October just started but honestly, we're in the last week and I'm so overwhelmed with life. To think by the end of the week we only have two months left of 2021 is just crazy to me. So much has happened this year and I'm trying to close out 2021 on a happy note, so we're made some changes to how our family functions and how we are going to do things going forward. More on that later. 

I started the month out by getting my hair cut and colored. I was sick of hating my hair and I had money from my birthday in March so I figured, fuck it, I'm getting my hair done. Somehow though, it doesn't seem as dark as when I first got it but that's alright. I'm just happy it's not a weird golden orange anymore. 

Olivia is learning to drive and she can test for her license right before Christmas. Matt has been taking her because my anxiety has been so bad lately but also my own vision hasn't been great so I wouldn't be a good teacher for her. We let her drive out to her grandparents' with Matt so I followed behind with the other kids, it's such a weird experience to follow your kid in a car they are in control of. 

We've spent a few Friday nights freezing our asses off in the stands to watch Olivia play in the band. They did really great and I'm glad she is enjoying it. I think Jackson is looking forward to being out there next year. 

Penelope and Lucy have been super involved with recent book reviews but I even got a quick picture of Jackson and Penelope sitting nicely together without bickering. 

I'm trying to not share much about the kids in general on here anymore but I can't resist showing you Olivia before her first Fall Ball. They didn't get to do any high school dances last year so this was just extra fun. She went with a group of friends and they all seemed to have a fun time. She's such a beautiful young woman. 

I can't even remember if I mentioned it or not but Matt and the kids built me a Little Free Library for Mother's Day this year. Over the summer he put that up for me and we've kept our library stocked with mostly all new releases (if you live near to me sometimes I put some review books in there!) and every once in awhile I get a real doozy that makes me laugh. Last week this one showed up and I had to take a picture of it. 

Both Lucy and Penelope went to their first dental cleaning a week or two ago and apparently between the both of them there are seven wiggly teeth on their way out. Penelope wasted no time just yanking one right out like the first two she lost. She got her $1 from the Tooth Fairy and she's eagerly working on losing more teeth because she really likes money. Don't we all, girl. 

Oh yes, I got my first Christmas gift wrapped with help from Jackson and George. George was more about ribbon control and supervision, though. I've already started ordering things and getting myself organized. I am SO on the ball this year though, I've been saving cash for the better part of five months (next year I'm doing Christmas saving challenges so it'll be even better) and I'm chasing deals to keep costs down low. So far I've only spent $350ish and I am mostly done with the kids, so I can't be mad at that. The rest I have money for, I'm just waiting for the best price before I commit. What am I getting Matt? I have no idea. Literally not one idea. Well, I had one idea, which is what I wrapped but other than that..... I've got nothing. 

So that's how most of October has gone. My office Christmas tree is going to go up on Monday. I might hold out a little longer for our big tree, I'm not that ready yet. 

Things look a little different around here.

I've been thinking about this for awhile, but now that the kids are back in school and I had some time to sit down and just do it, you'll notice things look kind of different. Or maybe not unless you're looking for old posts or something specific. 

Banana just hangs on the chair like this- he's weird. 

I have taken most of the posts that have pictures of my kids in them. Not all, you'll still find a few, but I think going forward I likely won't post photos of them so much. It's not because I don't want to share the hell out of them, but I think I'm changing as a person in general. Does that make sense? 

Banana and George like to wrestle at night. It's so bizarre to watch. 

If you have been around here for years (I started in 2008!), you know that my writing over time has changed drastically. I still have the posts, so I could bring them back, or at least go back and read them for myself. I started this blog as a mechanism to share photos of my kids for family who were all far away. While that could still be the reason to keep photos, pretty much everyone is on Facebook and/or Instagram, so I guess it's not needed that I share them here. Over time, I evolved into a more... snarky blogger, you could say? I think when I look back at my life then, I was in a much different space than I am now and certainly I was a totally different person. 

Can we just admire my older cat, Batman? He's actually playing!

Not to say I'm lame as hell now, but I'm lame as hell. I'm moving my blog to be more book centered but I also am going to keep my medical updates, vacations, and book reviews, of course, but I likely won't be blogging a whole lot about my home life. Between horribly disgusting spam comments I end up deleting and just thinking about my older kids' getting older and wanting less out there, it just seemed like the time to do it. I'll give updates here and there, but not much more. 

Don't get me wrong, I want to, and god knows I have SO MANY THINGS to write about because my life is a tragic comedy. I have so much on my plate and happening to me and around me that most days I just sit inside of my closet, on the floor, and scream into a pillow while simultaneously crying my eyes out. It's just too much and frankly, I don't know how this much just keeps happening to one person. It's certainly not fair, that's for sure. My blog used to be an online journal of sorts, where I would write out my feelings on things that were happening, and I guess it still could be that, but it just doesn't feel the same, you know? I think a lot of bloggers are feeling this way as well because I see so many changing, it isn't just me. 

The Halloween That Broke Me

I'm not trying to be dramatic with the title, but it really feels like Halloween is going to be the event I look back on to say, this is it- this is where I lost my actual mind. It wasn't the start of the pandemic, it wasn't even summer. It was Halloween.  

Halloween was supposed to be OK. I really debated for weeks on what we were going to do. I chickened out and didn't buy tickets for Boo at the Zoo. I bought costumes and I bought candy to hand out thinking maybe we would go out. In the end, I chickened out because I was afraid we'd get sick but also, I was afraid numbers city wide would spike and we'd be virtual schooling so I thought I would do my part. 

So my shark, Golden Armor Wonder Woman, teenager, and tween panda all stayed home in the end. 

I solidly convinced them that staying home, staying up late to watch movies, eat candy, and hang out would be WAY cooler than trick or treating in the wind. The big kids were in charge of handing candy out to people who came and everyone who did come got handfuls, several handfuls of candy, from us. We watched Hocus, Pocus and, fight me if you must, but I think that movie is stupid. Penelope agreed with me and she's basically always right. The big kids and I made pom pom's (more on that in a different post) and it was fine. 

It was a fine Halloween. 

Fast forward a week or so later and, SHOCKER, Covid numbers county wide spiked because people didn't social distance, had Halloween parties, hanging out at the bars, doing all of the things we would do on a regular Halloween. So now? 

Now we're virtual schooling until at least the end of November but I'm not stupid and I don't realistically think numbers will go down to safer levels until the end of January at best so here we are. 

It is really as bad as I thought/knew it would be. Granted, it is far more organized than it was in the spring and I am so thankful our school district is as great as it is. I have zero time for people who critique our district like they do because ours is great. It's organized, everyone is doing their best, there are systems in place, and staff at all levels are working their asses off.

When I see people who are "I worry about the mental health of people" on social media? You need to worry about me. I am the mental health issue. I am barely making it. If you ask me how you can help or what I need? I need someone to do it for me. Let me sleep and be alone because that's the extent of what I'm capable of right now. 

Olivia and Jackson are doing great, but they are pretty responsible and great all on their own so I had no worries. Both are keeping great grades, I get nothing but compliments from teachers and it is totally fine. No worries. 

Penelope... I think the problem with Penelope is she is impatient and too smart. That is kind of a dangerous combination in general but when you're in a virtual learning environment, it is pretty awful. 

Day one she was all about it. She has a computer from school, the novelty of doing things on the computer hasn't worn off, and it is all fun and exciting. Day two until now (which is literally only a week, it's only been a full week) and she's over it. She's bored, I have to bribe/fight her to get on, let alone participate. We take all of the screen breaks, we do activities, I've had crafts set up during break time so she doesn't get bored. We've gone outside, we've done exercise, we've had snacks, we've played toys, we've listened to music, etc. It all goes meh until I say, "a few minutes left and then we will get ready for writing/math/etc" and all hell breaks loose. She cries, screams, throws her body wherever, it is not pretty. 

We've had some highlights, like gym class, art, and music. Those have been OK. Granted, we've only had one class of each over the week so far so it's early yet. She flies through her work and worksheets. She refuses to write, she refuses to add to a picture and says, "you can't force creativity, MOM!" and just imagine she's screaming it because that's what it is. 

It's so hard. 

Meanwhile I've got Lucy who would do school, in any form, 24/7. She wants more and more. I've been finding things for her to do but at the same time, I can only do so much with her because I'm forever trying to get Penelope to sit down and focus. We've tried different rooms in the house, having someone sit with her the entire time, its just a struggle. 

No joke I asked Matt how against pulling them from school all together he was and he didn't say no.... but it's not like he wholeheartedly agreed, either. 

Plus Lucy loves it and is fully engaged. She's even doing well with virtual speech therapy so I'm hopeful that continues. *knock on wood*

In the meantime, I'm just over here crying all day on breaks. I'm so over all of it. I'm sick of things being the way they are, I'm sick of people saying we all need to get sick and build immunities because they are so stupid and I just can't anymore. The fact that people who barely passed high school science classes think they know more about viruses and herd immunity than say, lifelong career scientists, is beyond me. 

Beyond. 

I'm just trying to get through this week. We are flying to Florida to see my family next week. We have reasons for going, and I'm not sharing it here, but know that if I felt like we had other options, I'd take them. It is not ideal, I am scared shitless, I haven't slept in days because I am terrified of getting sick but equally terrified any of our little family will get sick, but we are taking every precaution. It's a quick trip, we are quarantining afterwards, and I'm hoping for the best. So, think good thoughts for us. 

Because we're also flying there, like I mentioned, and the little girls have never been on a plane so yay. I'm THRILLED. 

Move it, move it.

If you were here on Friday you maybe saw my post about us moving. (If you didn't, go catch yourself up.)  Since then I've gotten a ton of support and offers to help and don't think I'm not going to take you up on that because Matt and I are getting old. He's only going to be 40, but he is almost certain he's going to need surgery on his elbow after all of this (its been bothering him awhile, so it's not like this just happened), and I can't lift anything. So don't start ignoring your phone now. HA!

I spent most of my Friday night packing up books. Which... that's actually really daunting. When we moved the last time I thought it was bad but no, this is actually worse. Even Matt agrees. Ha! I purged quite a bit along the way and I have some in piles to donate to specific people. I'm pretty sure I won't have as much room at the new place so I will likely have to purge more and that makes me sad. 

The great news is that I found Edward Cullen's head! If you aren't a long time reader, this is probably just weird to you. But long time readers remember when I had a six foot cardboard cut out of Robert Pattinson, aka Edward Cullen. I used to have it standing next to my side of the bed. Then he lived in my dining room for awhile. No matter where he was he would scare the daylights out of people. Even me sometimes and I knew he was there. In our last move he was "accidentally" damaged so Matt said I should just toss it but nope! I had an idea for a project so I neatly trimmed his head and top of his shoulders off, but I put it in my craft closet because I probably didn't have time. Then I forgot about it. Lo and behold! Edward has returned and he is 100% coming with me. 

On Saturday Matt went over to start building our bedroom, so I had all four kids to bring with me to run errands. I thought we'd be gone an hour tops but it ended up being a huge chunk of my day and I was exhausted. I brought stuff over for Matt and I had to just rest so the girls colored while I almost fell asleep. This is wiping me out. I told Matt my fear is I won't have it in me to move again. We'll see what happens, though.

Sunday I spent more time purging our stuff. So much has already been donated or given to friends/family who want/need it. Its nice to unload so much, its just getting daunting because I know a lot more needs to go, but as a family of six we actually use/need a lot of stuff. So... it is turning out to be a bigger job than I thought it would be.

In other news, it was super nice this weekend and I'm bummed I never really got out there. The kids have a SUPER busy week this week. Things on our agenda:

• Lucy's conferences and 4K registration
• Olivia plays in the University of Minnesota's Honor Band
• Olivia and I are going to a mandatory meeting for our DC/NYC trip (more on that soon)
• Olivia and Jackson are going to the Level II meet for Forensics
• I have therapy (thank god)
• Penelope has conferences and we talk about her kindergarten readiness
• Dance on two nights this week
• A school movie night we're going to try to get to
• Penelope has TWO birthday parties to go to this weekend

That's just evening things. My days are completely jam packed of stuff to do and places to call. Poor Matt is going to be working a ton all week. I'm already exhausted. 

Revenge of the Digestion System and Changes

When I posted on Facebook that I was going to have my gallbladder removed everyone told me how great I was going to feel. So much better! I have friends who have had it done and they all gave me good post surgery tips and talked about changes they made.

Cool.

I'm like two weeks out from my surgery and you know how I feel?

AWFUL.

I am nauseous ALL of the time. I have had the worst heartburn of my life and my Omeprazole isn't doing squat for it. I ate an entire bottle of Tums over the course of a day and no relief. The idea of food and eating it makes me want to throw up. I have been trying to eat toast, maybe a handful of grapes, some saltine crackers and all of it makes me want to throw up.

Even better?

It doesn't matter what I eat or how very little of it I have, I will have diarrhea. Not just regular, this is inconvenient diarrhea, but it is painful. The cramping is painful, too.

I did go to the surgeon follow up and I didn't meet with him, I met with one of his PA's, and she didn't seem concerned at all. Which... I can't imagine this is normal. Seriously, I cannot live like this. The closest comparison I have to this is morning sickness but EXTREME.

I am so tired and physically weak because I'm not getting enough nutrition but I cannot stomach anything. I messaged my gastroenterologist to ask for help. I see him at the end of March but I am going on that Washington D.C/New York City trip with Olivia (I'll post more about it next week) and I can't imagine going on that trip like this. I can't even run to Target without making several bathroom trips and then breathing and counting randomly so I don't throw up on the floor.

It's bad. So that's how my recovery is going.

***

Really big news that has come (literally) out of left field: we are moving.

I know, didn't see that coming, did you? I haven't talked about it much because I'm still just trying to process it myself, but my parents have moved to Florida to care for my grandparents. It is no secret that since my AFE things have been financially tight. To give you a better idea, when I had my AFE we had less than $5K in debt that wasn't a vehicle or house. It wasn't bad at all and we assumed I'd be going to work so it was manageable. Once it was clear that things weren't going to be the same and I wasn't going to work, we got a little nervous.

We were lucky to have a GoFundMe account and that is what kept us from losing our house because those first six months Matt was working sporadically between helping me at home, taking care of kids, getting me to appointments, etc. If you aren't working, your paychecks aren't covering the bills. We used that money to basically float us for six months. We never planned on me having disabilities, seeing so many specialists and having all kinds of tests, trying new medications and it being a never ending cycle. For the last three years when I say we are barely getting by, I am not kidding. We are in debt up to our eyeballs and the only solution right now is to plug the holes in the boat.

Our house is a hole in the boat.

Not only can we no longer (realistically) afford it right now, but our house is big. I mean, it looks big, but if you walk up and down the stairs all day? Exhausting for a healthy person. I am no longer capable of cleaning it. I can't take care of things. Some mornings I can barely get down the stairs when I wake up. It's just too much.

But let me be clear, I don't love this house. It wasn't going to be our forever home. It was really just to get us through raising the kids and then we would downgrade. Even though I'm not in love with this home, I'm really sad to move. I'm sad because we are moving to a home that is half the size, maybe even less. Six people = one bathroom. I feel like we're all being punished because I got sick. It's all my fault we're in this predicament and I feel guilty as hell. I know it isn't rational and we're here whether I feel guilty or not. I am scared that we're not seeing a larger consequence later on down the road. I trust Matt wholeheartedly and when he says this is what we're doing, this is what we're doing.

So where are we going?

We're moving into my parent's old home. I grew up there from age 14 and up. The house has sentimental value and the thought of someone else living there really bothers me, so I guess on the bright side I won't have to navigate those feelings right now. We will be saving a TON of money each month to apply towards debt. It does feel like a weight is lifted, like we're going to move forward again. We've got five years to get the debt under control and then we can either buy the house or we can move somewhere else. It's all kind of up in the air and if you know me, not having a concrete, permanent home base is terrifying for me. As a kid I really hated moving and it never made me feel secure. I worry that I'm doing this to myself now but also to my kids.

Fortunately, the only changes they'll have is a different bus stop. I'm not sure when we'll be IN that house because Matt has to build a bedroom for him and I (the house is only a 3 bedroom) in the basement, and then we'll start moving things over. We'll have a few things to fix here before we can list our house and hope it sells quickly.

I don't know if you are the praying type or just the kind who sends positive thoughts, but we would take any and all of it. I'm really feeling anxious, scared, and uncertain. I know all of it is my own issues and I'm going to do the best I can to make this move not a pain in the ass but also be kind to the kids. Olivia and Jackson really aren't thrilled, and Penelope and Lucy are so worried we won't be bringing their toys, stuffed animals, books, clothes, etc. The concept of moving is totally foreign to them and not Lucy so much but Penelope looks scared and I feel really terrible. That somehow my body has failed us all and its my fault they are sad/mad/scared.

Sigh.

So that's the scoop.

It's going to be OK. It can always be worse. I am thankful we will have a home. I am thankful we have family who help us out. I am thankful to have friends who have already told us they will help us in any way. I am thankful for my therapist who starting next week is going to see me have panic attacks during sessions again. I am sure she has missed them. HA!

December 2019 Wrap up.... 2020 Goals

I knew going into December it was going to fly by because I had a lot going on and the sheer amount of work that goes into Christmas makes days go by. It's only dawned on me in the last day that this is the end of a decade and that's weird but I also no longer have concept of time so I guess maybe it isn't so weird after all.

December Highlights:

• We had Snowmaggedon at the very end of November but it carried over in December and it was ridiculous. It was the first time (that I can remember) that I was legitimately snowed in and unable to leave my house. 
• The big three went to Grandma's for the weekend, so Matt and I only had Lucy and it was a DREAM. When the big three came back we made a last minute decision to go to Bentleyville to see all of the Christmas lights and freeze our asses off waiting for Santa in the name of tradition. 
• I really struggled with depression this month, I saw the weight loss doctor and learned I was fatter than I thought I was and started a diet in which I think I'm failing and I can't wait to go back in January. Ha!
• I gave you a recap of my Best Books of 2019 and I hope you found your next read on there. 
• Olivia had her first 8th grade band concert, they did SO well!! A far cry from the squeaky and rough 6th grade band!
• Olivia, Penelope, and Lucy had a dance recital (pictures coming soon). 
• Penelope had her first grade school winter concert. She did pretty well but was totally nervous and it was adorable. 
• Lucy had a family fun day at school so I can and we made crafts and sang songs. She was totally excited to show me all the things. 
• We had Christmas and it was great. 

Books I read:

• The Cost of Honor ⭐⭐⭐⭐
• A Lady's Past  ⭐⭐⭐
• I Heart Hawaii ⭐⭐⭐⭐
• Our Totally Ridiculous, Made Up Christmas Relationship ⭐⭐⭐⭐⭐
• Christmas in Newfoundland ⭐⭐
• The Playground ⭐⭐⭐⭐
• Landon & Shay (part two) ⭐⭐⭐
• Hoops Holiday (novella) ⭐⭐⭐⭐
• Cowboy Christmas Redemption ⭐⭐⭐⭐⭐

2020 Goals: 

I'm going to put my yearly goals for 2020 here because I feel like January is all about setting yourself up for the rest of the year, so we are doing that all month and coming up with a plan. 

• Our current debt (not including our home or vehicle) is hovering at $41,000. We would like to get that down to $28,000. To get there it means really buckling down on things. Sorry friends, we likely won't be sending fun things to you randomly during the year. We probably won't be doing a lot of fun stuff that isn't free. We're going to do a budget friendly vacation this year. We need to figure out how to free up $1100 per month or so to do this. 
• Budget friendly vacation! We do plan on doing a road trip but we're looking at the possibilities to cross a bunch of states off our list but also won't break the bank. Option A: Iowa, Kansas, Oklahoma, Arkansas or Option : Michigan, Indiana, Ohio, Kentucky. Please weigh in. Our requirement to cross it off is to do a touristy thing in each state, maybe more than one. 
• Continue with therapy and get through the year. I know that seems kind of dumb, but I know 2020 is going to be a difficult year for me because the support system I've relied on is going to be gone, so I will have to do a lot all on my own. I know, millions of people do this every day, but I struggle. I can no longer "go with the flow" or multi-task and I struggle with every day things. I look "normal", I sound "normal", I am not "normal". I have been struggling with a lot of things and the realization that I'm at my peak recovery and I'm not back to my normal.... it's upsetting to say the least. 
• Olivia and I are going to Washington D.C./New York City in March and I'm so excited for her. Her friends who are going are excited that I am going to because I think having a mom you know is comforting. I am scared shitless and I am so worried I'm going to get sick, get disoriented/confused, or that something will happen to me. This is my first time going somewhere without some I know/trust helping me. I am terrified. 
• I would like to finish our Missouri vacation and my Vegas vacation scrapbooks this year. I really want to get back into scrapbooking. 
• Organize my office/library/craft room. Matt says he will help and build me a table/desk to make my room seem larger and maybe help me with storage and I am so excited and really hope it happens. I just need to find some ideas now! 
• Lose 15 pounds. I know my goal for 2019 was to lose 5 pounds, and I did that (barely) but my goal for 2020 is to lose 15. I can do this, I have to buckle down. 

That's it, those are my goals for 2020. What are some of your goals? 

Weight Loss Monday: Walking with maybe predators. And the sun is trying to kill me.

I feel like I'm finally getting my groove back. Matt said I used to be super crabby if I didn't get my nightly walk in every night years ago when I was in my weight loss kick. I'm starting to get that feeling now but I am also really very tired so it's been a struggle to go.

Last week though I walked Monday, Wednesday, Friday, and Saturday. The goal this week is to go every day. I'm not kidding. I am finding that walking in the morning pushing a stroller is really tough and it makes one mile feel like I'm walking to my death. In the evening, after dinner, I've been walking a mile and getting the itch that I could go further so I'm going to try. Two miles with the stroller is an absolute no-go because Penelope and Lucy are heavy. It's almost pushing 60-70 pounds and I know that's nothing to most people but for me? It's something.

I also discovered after really looking back at my notes and putting information together on my OWN that I think I have heat intolerance. Which, I know it sounds like I'm one of those crazy people using Dr. Google and diagnosing themselves but that's not the case at all. The last three summers have been kind of awful and full of days where I'm sick (vomiting, diarrhea, migraines, fatigue, and flu like symptoms) but they are sporadic and I didn't think there was any kind of pattern.

Oh but there is!

They always happen the day AFTER I've been outside for awhile on a moderately warm day. Just this summer alone I've had a few of these events (and they are the worst, no joke) and they have all started while I'm outside. I'll start with a headache, then I have to run to the bathroom, then I feel like I'm going to throw up everything I've ever eaten in my life, then I get unbelievable fatigue (it feels like I'm going to pass out because I am that tired) and I start to hurt all over. It'll last for an entire day, sometimes two. Nothing helps other than a ton of ice water and sleep.

I sent a message to my rheumatologist and my endocrinologist and I got varying information. Rheumatology didn't seem to care even when I point blank asked if it's possible I have lupus. I guess I'll have to bring it up at my next appointment again and see. Endocrinology was a little more forthcoming with information and while he didn't seem concerned or surprised, he did let me know that where I have brain damage and pituitary damage is where your body regulates your body temperature. So when you get warm your body tries to regulate it, same as when you get cold. Apparently I cannot do that so I'm at a significantly greater risk for heat stroke, so that's really fun. The only solution he has for me is to wear a hat, always be under shade, where loose fitting, breathable clothing, drink obscene amounts of water, and do whatever I can to not be hot.

I also realized on July 3 when I was sitting, in the shade, in the yard watching kids play and chatting with Olivia and her friend, I had drank 150 ounces of water that morning between 7-11 a.m.

And I didn't pee. Not once. Didn't even feel like I had to.

In fact, I drank more and more water all day.

I peed before I went to bed for the first time that day at 10 pm.

So clearly, something isn't normal.

**
Next up is my walks. I do the same loop every walk because it's easy to know when to turn around and it's easy for me to find my way home in case I get confused or disoriented.

On Saturday though, as I was almost to my turn around spot, a man was walking toward me and I didn't think anything about it. As he walked past me I just..... I got that feeling. You know when your gut is telling you something isn't right? You get that urge to run and look for help? That's what I got.

I turned at my normal spot and he kept walking the direction I had just come from. As I got around the block I just have an uncomfortable feeling and I actually feel unsafe. Something about this doesn't feel right and I'm not sure what to do. So I keep walking. I realize he's matching my pace but we're walking on parallel street. I slow WAY down mid block to let him get ahead of me. After was more than enough time for him to get ahead, I start going only to realize he stopped and was waiting for me.

I actually felt like I was being stalked. I'm not kidding.

I realize I'm maybe three blocks from my house now so I decided I'm going to risk injury and start jogging to get ahead of him. I'm clipping along at a decent pace and I just... I have a really uneasy feeling. By the time I got to my house (I live on a corner) I realize I have screwed up because now this guy knows where I live. He must have heard or seen Matt, who was working in the garage but had his saw pulled out into the drive, because he basically started booking it. I tell Matt what happened and he doesn't seem concerned, but I didn't see the guy again.

Not going to lie, I didn't walk yesterday because I'm mildly afraid I'm going to run into this guy again.

But it made me wonder, has a man ever felt that way? Like he's being stalked and followed, and been scared about it? I can imagine it isn't as frequently as women have. My entire walk home I kept running scenarios in my head, like what are my options? I can maybe run through some yards, maybe start banging on doors. I had my phone and I could have called for help but what if he grabs me and I drop my phone? How would they know where I was dragged off to? If I started screaming would anyone be home and willing to come out and help me?

My priority this week is to seriously get pepper spray or something to take with me. Even if I never need it, maybe just having an option would make me feel better. I don't know.

Med Update: Probed and Poked!

I feel like I haven't really given you an update on how things are going with me health wise. It isn't terribly exciting, but I am still plugging along. It's really interesting because life post AFE has been really challenging and I don't think anyone thought this is what my life would be like when they saved me, but here we are. I think a hard thing for me is that there isn't a blueprint to follow for this, it's really dealing with one thing after another as it pops up. Some of us have similar issues, some of us have different issues, some of us have no issues. It's just really frustrating because there isn't one person in the whole world who has the same bag of issues and sometimes I feel really alone. It's hard to not have anyone to compare things with and talk to about it, and maybe get advice or suggestions from them.

Anyways.

Some of the things I've been handling are the same as other people so that's been helpful. I had to have my follow up endoscopy and a colonoscopy recently. I don't know if I blogged about it last year and I can't find it if I did, but last year I had a panic attack during an endoscopy. It wasn't the procedure itself, it was laying on a table for twenty minutes waiting for anesthesia, and it just reminded me of dying on the table during my AFE and Lucy's birth, and I couldn't handle it well.

So this year I was a little anxious about it and I wanted to just get through it. But it turns out that was nothing compared to colonoscopy prep. I knew going into it it was going to be horrible but man.

They aren't joking when they tell you that.

I barely got through it. I threw up more than I ever have in my entire life. It was horrible. It was 4 liters of drink and I only made it through just shy of 3 liters, I took 3 laxatives, a Linzess, and took some Miralax and I swear- I pooped once. Literally. Almost nothing came out so I was so worried I wouldn't be able to do the procedure and god----I couldn't even do the drink again. I couldn't. 

So the day of, I was so anxious and I just wanted to be done. I got prepped, all of my questions answered, they take my blood to check my potassium and blood sugar levels (because of my diabetes insipidus) and we enjoyed the fact they just kind of left it there. It was "extra" and I don't know why but I kept laughing and laughing at that. 

My doctor had an emergency so my procedure ended up being delayed almost three hours, so we got to watch cable TV which is basically making this feel like a damn spa. 

Overall, the procedure went OK. Despite my worries, apparently my colon and intestines were empty so where the hell it all went, I'll never know, because it didn't come out of me. Which really, that makes me a little angry because I drank all of that for nothing. Gross.

The purpose of my procedures was to follow up from last year's endoscopy to check any changes with my Barrett's Esophagus. As it turns out, it looks like a little different so they took biopsies of that. I have gastritis and they took biopsies of that area as well. I was having trouble swallowing as of late so he ended up stretching my esophagus and so far, that's really been helpful. The colonoscopy resulted in finding polyps so those were taken out and a few areas biopsied so now I wait. I go into the office in a couple of weeks so I'm hoping those all come out OK.

The cool thing though is the lead anesthesiologist came in to introduce herself and tell me how the procedure was going to go. But she mentioned that she didn't know my name or face, but she knew my case and my medical history, and wanted me to know that my AFE event spurred a lot of education, learning new procedures, and new protocols. I thought it was cool, but Matt said, "Some people hope to do something big in their life, and you did. You alone made a big change that matters to thousands of people." and that was kind of sobering because he was right, but also because that was the most profound thing I've ever heard from him and about me, no less.
***
Other than that, I officially have osteoarthritis which is super excited. She pushed on something by my shoulder and I damn near fell off the chair. So that kind of sucks. BUT! My rheumatoid arthritis seems to not be in a flare right now so I'm happy about that.
***
I continue in therapy. I really look forward to it but I'm realizing I need a LOT more help in other areas. The good part is that I can sometimes recognize things and think of what my therapist would tell me about it. I can sometimes recognize a situation and know that it is bad for me. So I keep trying and I keep plugging along.
***
Weird thing is that when we were in Florida a few years ago I got sick after being in the sun after just a half hour, I thought it was strictly the heat that did it. Turns out, I think it's the actual sun. The other day I sat out in the sun for about 20 minutes and all of a sudden I got really sick, really dizzy, and all of a sudden incredibly tired. I had to go back into the house, get an ice pack, and lay down. I didn't feel "right" the rest of the night and that was awful. So now I'm starting to wonder if there's a reason for this and which doctor I even tell this to. But that's the other annoying part- having doctors in different specialties is really helpful but also I never know who to tell what.

So that's the scoop. Cross your fingers that my biopsies come back boring and normal. I have zero time for a bigger issue, I'm just trying to handle what I have already.