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. 

Pandemics are not fun.

Today I should be exploring Washington, D.C. and getting excited for a five hour bus ride to New York City.

But I am not because of a pandemic.

I have a lot of feelings about this pandemic and how people are handling it but the top two feelings are anger and fear.

I'm angry that people think it isn't a big deal, refuse to quarantine, and for whatever reason think this is all media hype for fun. I don't get it, but not everyone can be bright bulbs, right? I am legitimately scared because I am immuno-compromised. It is dangerous for me to get a cold let alone the flu. If I get any kind of sick I have to increase my medications and hope for the best. I can go to normal to organ failure in no time.

People like me really need you to Netflix and chill.

I really need you to stay home. Marie Kondo the hell out of your house. Do your spring cleaning early. Read a book (or ten). Learn to make something from scratch. Catch up on laundry. Take naps. Literally do anything except leave your house.

I know its hard and it really sucks. I have four kids, BELIEVE ME, I GET IT. Our governor has closed schools until April 6 and starting next week my middle school kids have to do school stuff on their laptops. I have no idea how I'm going to keep high energy Penelope and Lucy entertained in the house for weeks on end. It isn't like I can just whip out an activity, we're spread out between two houses right now so I have no idea where any of my stuff is. Crafts? No clue. We found books and games but if you think I want to play hours of Candy Land and Chutes and Ladders you are insane.

I really hope Matt can make huge progress on our room so that we can literally move during this time and that'll obviously keep us all busy and I'm sure time will fly by.

In the meantime, I have no idea if our big adventure will be rescheduled, I really hope so. Cross your fingers. Olivia's dance competitions have been postponed, we have no idea when they'll happen. Dance classes are also postponed, which makes sense. I'm grateful that I was able to buy some groceries so we can hopefully make it. I am grateful that we had the ability to purchase extra things. I am grateful to have a medical team who understands my situation and is helping me through it. I am grateful my parents are here because that makes this stressful time a little less crappy.

Next week I have four doctor appointments and I just really hope I can get to all of them.

That time I was beat up by a gallbladder.

I'm going to preface this to say there is a lot more to this story that happens before that I'm just not mentally ready to talk about that would make my feelings about this make more sense. Just know that immediately before all of this happened, I had some major life changes happen the same week as this, so by the time all of this happened, I was already in a depression low. So that makes all of this that much more depressing.

If you follow this blog you know I have a ton of medical stuff going on at any given time, especially stomach issues. I've had unexplained pain and though I've had two endoscopies and a colonoscopy, no real cause was determined. We knew that I had a few gallstones and while my symptoms weren't screaming that I needed to have my gallbladder out, I knew that eventually it may be a thing.

As it turns out, now it is a thing.

Last Wednesday, I woke up with a minor stomach ache. Nothing big, and everyone in my house has had a stomach bug so I thought I was probably next. I had been having weird bowel movements for about three weeks and I figured it was either the stomach and flu bug going around my house the last month or so and/or some medication I was only a month into taking. I thought maybe my body was telling me this wasn't going to work out. That day though, no issues with that, just an icky tummy.

I couldn't eat a small bowl of cereal in the morning, I felt a little nauseous. I couldn't eat lunch because I felt like I was outrageously full. By dinner I knew I had to eat something so I could take my nighttime medication, so we had spaghetti and I tried to eat a little of the chicken and the plain noodles. I just really couldn't stomach it so threw most of it out.

Around 9 p.m., we all go to bed. Matt had been sick and barely functioning so when he went I figured I probably should in case I really was getting sick. By 10 though, it was clear it wasn't happening. My stomach hurt. When I say it hurt, I mean it was worse than being in labor. I'm not even exaggerating. I decided to go take a hot shower because it was a pain going right through the middle of my chest into my back, like I was being impaled. Shower was nice but not helpful. I got into bed and thought maybe a heating pad would help. I literally suffered through this for two more hours until waking Matt up at midnight and saying I think I need to go in.

Let's just feel remember Matt is loaded up on NyQuil, he feels like absolute crap, but he's more able to drive than I am at this point. I felt terrible.

Olivia was still up so I told her I was going to the ER, don't freak out, but if there's a fire she's got to wake everyone up. Cool, so we leave.

We get there and thankfully there wasn't a crazy long wait, maybe a half hour or so, but I thought I was dying in that waiting room. At this point I had Googled enough that I thought I'm either having a weird heart attack or a gallbladder attack, neither of which had super enjoyable options.

By the time I get there, the doctor (and nurse) are fairly surprised that I'm in as much pain as I'm in. It felt like contractions, like a dull pain that stays and every minute or so it ramps up and just HURTS LIKE A MOTHER%*!@)!. The doctor can't even touch my abdomen without me screaming and jumping off the bed so he orders a CT scan and an ultrasound.

I got my handy dandy IV and they gave me some pain medication, Fentanyl, which was horrible. I mean, it took the pain away but I also felt like I was on an out of control speed boat going side to side. Even Matt said I looked completely high.

I go to my CT scan and they tell me I'll have to lift my arms up, which is fine because I've done this kind of scan on my abdomen before so I know what to do. I can only lift my IV arm up though and she tells me totally fine. We do the first two scans, normal, no problems. The next ones are with contrast and as she puts stuff in my IV it really hurts. I go to put my arm up and it explodes everywhere. The contrast stuff is all over my face, both arms, chest, hair, machine, everywhere. Apparently there was too much pressure but my IV was intact.

In case you don't know, that contrast stuff is SO sticky. By the time I was done, they had me go into a restroom with some towels and told me to do my best to wash off because it basically looked like someone ejaculated all over me. Like all over, and it was getting crusty.

Nice.

I got wheeled into ultrasound after that and she had me rolling over into the weirdest positions I've ever been in during any kind of exam. She tells me she sees a LOT of gallstones, sees that it's extremely inflamed and that there is a "big chunk of something" towards the bottom.

She said she would send all of that to bed read after she got me back down the hall. As soon as I'm wheeled away and she's not even down the hall, the ER doctor comes in and says my CT scans are really pretty bad and I'm getting my gallbladder out first thing in the morning.

So we wait. We had to wait for them to find me a room to go to for the rest of the night and be prepped in the morning.

At this point I have enough drugs flowing through me so all I'm feeling is a dull pain I'd register at around a 5, but it's what I feel EVERY day so I'm not even phased anymore. I mean, I can work through this because I've had to for years now, so I'm fine.

About an hour later, they get me up to the fifth floor, but instead of the surgery side, I get put on the orthopedic side because they didn't have a single room or a shared room with another female.

At this point I'm delirious with sleep because I hadn't slept all night on Tuesday because of Matt's snoring, and now it is early Thursday morning and I still have not slept. Matt wasn't feeling so super, either.

We waited all morning. Apparently my idea of "first thing in the morning" is different than everyone else's, so I was getting a little annoyed.

I did have a nice room with a decent view though, so I can't even hate on that. My nurses literally had no idea what to do with me because they aren't used to handling people with gallbladder issues, so I was getting annoyed as the day progressed. By 5 pm or so, it was shift change and I had two very nice nurses come in and ask how I was. I started to cry and say that my child care was going to be done at 7pm and I honest to god needed to have surgery by then. They asked if Matt had to be here and I was like, YES because I can't speak for myself if I'm unconscious and he sucks at answering the damn phone.

Lo and behold, if you call down to surgery and ask when your patient needs to go, they come and get you. (Which... I honestly would like to know if any of my daytime nurses did that because when I got down there they had all be waiting for me. For HOURS.) Anyways. I had to have my hydrocortisone drip set up before my surgery, one during my surgery, some iodine drip so they can see what they're doing in there, etc.

I just remember laying on this bed back there, speaking with the anesthesiologist about the procedure and he recognized my name from my AFE and told me what a big deal it was. He talked about how things are still being changed because of my case and they talk about it often. I mean, that's cool to hear, but at that moment, I was terrified. I've had anesthesia a few times since but it doesn't get easier. It's like now that I know first hand that things can and do go wrong, and I'm not immune to that, I'm scared. Regardless, the gallbladder still had to go.

While Matt got the summary from the surgeon, he learned that not only was my gallbladder in rough shape, but a rather large gallstone(s) had worked its way up into an artery and that likely is the extreme pain I was feeling. I sat in the recovery area for almost two hours because they couldn't get my pain under control. I don't remember much, but I remember a nurse holding my hand and rubbing my arm and telling someone different things to try and listing off what she had already tried. I just remember awful pain everywhere.

I don't remember being transferred to my room, but I remember being there and meeting my night nurse David, and seeing Matt there. He had ordered me food in case I was hungry and had gotten me water (because I wasn't allowed to have anything to eat/drink before surgery so I went an entire 24 hours with nothing... which is HORRIFIC if you have diabetes insipidus and you grave ice water at all times and feel like you're dying of thirst) and was helping me get ready for bed.

I know Matt left to go home for a few hours to sleep, and my pain was just awful. They had me wedged in bed so I couldn't move really and I had this cool towel on my head which was helpful because I was starting to get a headache. They gave me morphine at some point and I had to yell because I thought for sure I was going to throw up everywhere.

Fortunately I didn't, but the barf bags now kind of look like weird, giant condoms. Right? The morning after surgery,  Friday, I was in so much pain. Honestly, recovery after child birth didn't even hurt this bad. They were having a hard time getting my pain under control and just really wanted me to go home, which I get, so I gave up when my pain was at a 5/6 and told them fine- send me home. Honestly. The surgeons came in to talk about the procedure and answer questions and they are looking at me like I must be feeling SO much better and I'm just nodding my head with tears streaming down my face. I left two hours later.

Not before I looked in the mirror though, because I am a glutton for punishment. I already have a mutilated looking stomach since Lucy's birth, that line under my belly button is the start of my c-section scar which ends a little lower and I call it the second butthole, because it does look like a butthole, no joke. But now I have these four other spots, with another one that looks like a belly button/butthole hybrid. My stomach is contorted and lumpy, and it's just.... I wasn't feeling great about myself as it is but this sets me even further back. To say I've cried over something so stupid more than once is an understatement.

So on Friday afternoon, I hobbled my way down the ramp I know so well (it's my only real memory of my time at the hospital after Lucy's birth) and went home. 

It is now almost a week since my surgery and I'm still in pain. It has definitely moved beyond the trapped air pain and it feels like every muscle in my abdomen was torn to shreds. Every organ was squished and manipulated, it feels like my ribs are broken, and it hurts to breath. I can hobble around a little more now, but sitting hurts. Laying down hurts. Using a pillow to move doesn't even help. It hurts to eat. I can pass gas and have a bowel movement OK though, and I was kind of worried. I can't dry myself after a shower. I have had to have help getting dressed. I cannot bend over, can't put my shoes on. Of course no lifting or anything that would use ab muscles, which is a lot as you can imagine. 

They sent me home with some oxycodone which is like eating Smarties and calling it a pain reliever. They don't do a dang thing for me so I only tried two and gave up. I alternate between Tylenol and Advil and those have never worked on me so I don't know why I even bother with those either. I'm just kind of using the labor breathing techniques I learned and who knew that would end up being a life skill? I just feel like crap. 

I really wanted my mom and I can't have that, and my depression is at a ridiculous low right now so I'm grateful to have therapy this week. I already struggle with independence with my medical issues and now having to have my children help me put pants on? It doesn't really do a lot to help me in anyway so I'm struggle. Which is STUPID, because it's just a stupid gallbladder. 

But. Here we are. 

So yeah- I had gallbladder surgery. No big deal. 

Bright side, hit my insurance deductible for the year, I suppose. 

Disappointment, Depression, Diet.

I know I haven't blogged in a few days and I wish I could say it's because I have so much going on I just couldn't squeeze it in. In a way, that's true.

Mostly though, it's just depression.

It's kicking my ass. My irritability is at an all time high. I feel like I'm walking a tight rope between looking fine and falling all the way apart. I constantly feel like the littlest thing could happen and send me into an emotional spiral of never ending crying.

I'm trying really hard to be cheerful and I really hate that this seems to happen this time of year because this is my favorite time of year. I hate that while depression has ruined a lot of my life it's now taking the one holiday I really, really love.

Why can't I have just one thing?

In other news, I finally went to the weight loss doctor. I'm sure I've talked about this months ago but it's finally happened and I learned a lot. The bare facts:

• I'm 206.1 pounds, 40% body fat. (No surprise there, I knew all of that)
• My goal weight is 160 pounds, 20% body fat (this is actually reassuring because that's where I was at before Penelope and I felt pretty good about things so I felt good knowing I wasn't aiming for something crazy like 120 or something)
• I'm an apple shape and apple are better than pears BECAUSE apples genetically can lose weight doing light/moderate exercise whereas pears have to really go hard in the gym. It's just how a body works, and it's weird but I like being an apple. 
• My visceral fat is 11, and that puts me in the "high" category. Between the visceral fat information and all of the lab work I had done, he's very concerned about me and diabetes. It's not my blood sugar necessarily, but my body is clearly not processing, absorbing, or breaking down anything normally so he said my primary concern needs to be this.  

I came away with a new pill, Metformin, and so far I'm tolerating it OK. I'm astounded at how huge it is so THAT's fun to take every day. Pretty soon I'll have to take it twice a day. Goody.

The plan is for me to get 30-60 minutes of exercise every day over and above what I normally do for activity in a day, nothing crazy. He doesn't even care what I do, he just wants activity.

My new diet? It's called the "Measuring Cup Free Diet" and it's pretty much just portion control. He spent a lot of time doing math with me to figure out what I need to (hopefully) help my body function more normally.

• 75 grams of protein, spread out over the day. I can have a protein shake or a protein bar but he showed me how to tell if the bar is actually any good for me, and told me to not get a shake at the local shake places, I have to make my own. There are too many other additives and things in those that would make it basically useless for me. So, that sucks because I'm scared of my blender so YAY. 
• 4 servings of vegetables. A DAY. If you know me at all you know I hate vegetables and I'm already really struggling on this. 
• 3 servings of fruit. Again, barf. 
• 2 servings of starch... which is the worst. I can have one piece of bread, 1/3 cup of cooked pasta or rice, and 1/2 cup of cereal. Only one of those a day. I'M GOING TO DIE. 
• 1 serving of dairy. Which I'm OK with because I'm not big on dairy, but it's only one slice of cheese. I mean, I love cheese. 

The plan is food journal EVERYTHING and I'm on day three and I hate it. I'm sure it'll get easier. My limit is like 1700 calories or something, and I'm finding I'm ending up with left over calories every day, so at least I'm doing well there. It's the protein that's going to kill me. That and vegetables. I think I can swing the fruit if I have to. But vegetables are gross. Barf. 

I'm only allowed to lose 1-3 pounds a week. If I'm losing more he's concerned something isn't functioning the way it should so we would do labs and see what's going on and make adjustments. Same if I'm not moving anywhere. So I'm optimistic. He's very nice, he made it clear he isn't going to lecture or shame me and said he 100% understands why I haven't lost weight, I'm fighting genetics and a hormonal system that doesn't work. 

Oh! And I learned that just because you take replacement hormones, that doesn't make up for the real thing to the rest of your hormones. My blood looks normal but my organs are functioning as if they have no hormones bossing them around, so things are kind haywire. It's like leaving a bunch of toddlers with no supervision in a kitchen. Basically. 

So we'll see. Best case scenario, this time next year I might look and feel totally different. 

Sara.... walks...

If you didn't sing that like Kanye West's Jesus Walks, I wonder how we've become friends. Honestly.

I don't know where you live but where I live (northern Wisconsin) it's been pretty dang hot outside. If you remember from last week, I'm pretty sure the sun is trying to kill me.

via MEME

It was like that all week so it was crappy for being outside. But you know who walked three times last week in the blazing sun and almost died?

Your girl, boo. 

I also wasn't followed by the neighborhood creeper either, so that was exciting. 

I would have gotten more in but on Tuesday I drove almost 4 hours away for a concert with Jackson (more on that... Wednesday or Thursday) and spent the night. But I think I walked about a half a mile from where we parked to the place and then another half mile back because I couldn't remember how to get back to the car and it's a really good thing my 11 year old son did. 

I didn't do anything Friday or Saturday because you know when you just need to relax and do nothing at home? 

I didn't do that. 

Instead I grocery shopped on Friday (I'm not kidding, I probably walked 1.5 miles in Aldi because that store has the dumbest layout ever) (and I'm angry because ALL of my produce? Looked GREAT on Friday, all rotting on Saturday, I'm so, so angry and it reinforces that Aldi's low prices aren't worth it). Sigh. On Saturday I took three of the kids and Matt to Target to get school supplies. I know, it's July and we have time, what is wrong with me? 

I'll tell you- I hate crowds. I'm not going to battle Susan over specific colored folders or wait for Karen to just pick a god damn pack of pencils because they are JUST PENCILS and your kid is going to lose them anyways. 

Sigh. 

So I go now and I got all 3 of the kids who need supplies done for under $60. Not including the calculator that Olivia needs which was not in stock anywhere so you can guarantee I will buy that online because I am not going to go back to Target or Walmart until I absolutely have to. 

Which is hopefully mid-September. 

So maybe I did do something after all. 

On Sunday it was significantly cooler and felt like it was going to rain all day but was still 75ish, so I took the girls for a walk in the afternoon. I thought I was going to die by the time we came home so I found this 2 foot by 2 foot patch of shade in my front yard and sat in it. My shade moves as the day goes on so I have to keep moving my chair. But I read while the kids played in the pool. 

The plan for this week is to walk as much as possible. It's kind of becoming a relaxing thing for me so that's been nice. This week is also kind of stressful. 

• Gastro follow up after my endoscopy and colonoscopy
• Lucy has speech on Monday which is also a pre-evaluation evaluation from the school district to see if she qualifies for help, and I'm sure she will
• Jackson starts therapy- I'm a nervous wreck
• Lucy has surgery on Wednesday, I'm a nervous wreck
• Lucy has speech on Friday which may or may not happen depending on how she feels post surgery
• BUT! I get to hang out with Amy on Saturday and we're touring a museum and see some fancy gowns. 

This is when all of the summer stuff starts happening and it's like a down hill slide into fall now. I keep telling myself that I am going to buy season appropriate gear that fits so I can keep walking outside because it is infinitely better than being inside on a treadmill. Ugh. 

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.

Stress. It's what's for every damn meal.

It's funny when I go to therapy and she asks me how have things been since my last visit. Normally I see her every other week so it's only like two weeks between visits so what could really  happen in that span consistently?

For me, a lot. Every single visit for the last week I tell her it's been bad and I'm struggling. I'm really getting tired of having a constant barrage of crap coming at me. Let's talk about what's on my plate:

• Lucy's speech. It's going well and she actually seems to enjoy having him come twice a week. It stresses me out because having people in my house sends my anxiety through the roof so that's been awful. He now thinks she actually DOES have apraxia of speech and that's more serious than just a regular delay. 
• Speaking of, we just set up her evaluation for the school district's speech people since she would need to transition to that when she's three, so that's at the very end of May. I didn't like the school (the person answering the phone was RUDE and started telling me some lady told her she isn't supposed to transfer people so she took a message but then decided to transfer me, it was a hot mess, and then the next person kept asking why I was calling and apparently, "I'm returning her call from 10:30 this morning, my daughter's name is Lucy" is not enough of a reason to warrant me calling.) Anyways. It's set up and I am telling you now, I really, really hope I can open enroll Penelope and Lucy because I do NOT want to end up at that school. Ugh. 
• Gastroenterology. Well it looks like I'll be getting a repeat EGD and colonoscopy done at the end of May as well. Yes, I get to be probed in both ends at the same time, I can hardly wait. But I need the colonoscopy this time because he's "concerned" about some of my recent symptoms and my labs so that has me completely worried. 
• Let's go back to Lucy. As of yesterday she has stopped walking. I know, weird, right? At first I thought maybe she bumped her leg or whatever but when she wasn't able to stand up all day? Something is very wrong. 
• I feel like a lot of things are going into the calendar and I can't keep up with any of it. It feels every single day something is going on and knowing I'm obligated to something is stressing me out. 
• My memory isn't doing great and my doctors say I shouldn't stay home and isolate myself, I need to push myself to go out of my comfort zone (within reason) and run my errands, go to dinners, and try to do things that make my working memory do its job. It's hard to do because when you know you are going to forget where you are, how you got there, what you're doing, how to pump gas, how to pay for something at a store, and you're forced to write your PIN on the front of your debit card because you might forget it, it's scary. It's actually terrifying and my first reaction is to stay home. But I can't because I'm losing it here and I can't handle this anymore. 

It's just a lot. God knows there's more but I'm not going to share it. I just... I'm exhausted. I feel like I keep getting things thrown at me and I just can't keep up anymore. I just want things to turn around. I want to be normal with easy problems and have not everything feel like a crisis. I'm just tired of it. 

Anyways. 

So good news is dance is almost done so I'll get a little break at least. Tennis for Jackson will start soon though and he's excited about that. Olivia made it onto the 8th Grade Leadership Team, which is a big deal and she's been panicking about it for a few weeks now. She's beyond the moon excited and it's hard not to be excited with her. Penelope is THRILLED to almost be done with 3K because that means she's big enough for 4K and she's all about that. We're planning a small vacation to Branson and St. Louis, Missouri to cross that state off of our map but it looks like we won't be able to go until August. But that's OK. I'm trying to find deals and hotels for cheap but I've got time. 

I don't know. I feel like I have a lot of things going on it my head and I can't keep anything together. I don't know if I'm coming or going anymore. 

Ears and Fatigue.

I feel like this week was more loaded down with doctor appointments but I guess not. I have an eye appointment yet this week but whoopty do.

We did take Lucy to her ENT appointment on Monday, though. Remember when I posted about how she's always sick and nobody knew what to do? Well as it turns out this guy doesn't either.

I had to wake Lucy up from a nap to take her so I wasn't sure what kind of mood she'd have because this girl LOVES to sleep. It turns out she was pretty great and doesn't mind the doctor at all, which is really nice.

So the first thing we did is her hearing test. That was actually pretty cool because I've always wondered how can they tell if a baby is deaf? Turns out they have this ear thermometer looking thing and with that they can tell. It takes literally 10 seconds. Lucy can hear but her left ear is greatly diminished and she has a lot of fluid in there. She has a little fluid in the right ear, not enough to get excited about. The game plan with that is to come back in two months and see if it gets better on its own. If it doesn't, she will need to have tubes put in and she'll likely have her adenoid removed because of her nonstop cold. I am VERY glad I went because Matt sucks at talking about symptoms and I'm basically a professional now. I also had pictures of her eye and how awful she gets and the doctor seemed taken aback by them and that's how the tubes and adenoid stuff came up.

But because we're coming back in two months we decided to cancel her ophthalmology appointment that was on Thursday because the last one is $400 out of pocket (insurance paid a whopping $2.10... yay!) and we know now that it isn't an issue with her actual eye, it's more of an ENT thing. So no point in going back to eye guy for him to say great, NEXT.

We did learn that little kids don't actually have a sinus yet, they aren't formed enough to get infected, so she definitely didn't have a sinus infection. Which I guess is pretty good. She did do her ten days of amoxicillin and seems to have helped because her eye isn't squinty and she doesn't have a cold (knock on wood). So I guess we'll see if that actually got rid of it or if we're just in a good patch and it comes back in two to three weeks like it's been. I'm not sure but I'm hopeful because she's just pitiful when she's not feeling well.

As for me I had my much awaited visit to psychiatry. He is really great and he's probably the only doctor in my lineup that I feel like sees the entire picture and knows what to do. He looks at things I'm experiencing and looks for connections and figures out how to improve what I'm dealing with without making something else worse.

I really appreciate that.

I think I've talked about being put on Ritalin to help with the chronic fatigue. I really am hesitant to be on stimulants but I also need to be awake at some point in the day and I'm out of options, basically. The decision today was because I didn't feel worse with my small dose of Ritalin, we're going to max me out but I can dictate how much I need in a day. So I can start at 10-20 mg and if that's not doing it or if I need another dose, I can take another 20 mg. I can only take 60 mg a day. I have to figure out at what time of day I can't have any more because I need to be able to fall asleep at night at a reasonable time.

We are leaving my anti-depressant and mood stabilizer the way they are because I'm not getting worse. I'm at the point where I know I'm not going to feel happy, joyful, etc so that's kind of unreasonable to expect out of a medication. The goal for me is to keep me even. I'm not happy, I'm not sad/mad. I still have a lot of days where I feel sad and I'm tired of getting up and going through another day. I have moments where for a split second I feel proud or I feel... like I can take a breath? Does that make sense? It never lasts long but it's something. I am getting better and better at faking it so I'm smiling, laughing, having a good time and people think I'm really feeling that.

I am not.

I've learned though that nobody wants to hang out with a person who visibly hates life. Have you seen the movie Inside Out? I'm Sadness. Basically that's my every day.

via GIPHY

I did forget to ask about my anxiety. I'm noticing my anxiety is actually getting worse and I forgot my notebook with my notes and questions in it (actually, I forgot where I put it so there's that) so I didn't even think of it. Until I was leaving and I realized the way I drive home is going to be closed for construction starting next week so I was going to try to find a different way to go.

But then I got really nervous and anxious about it so I chickened out and went the way I know that I know how to go. It seems dumb, doesn't it? But things as minor as driving a new route is stressful for me because I have a fear of getting lost. What if I get lost and I don't know how to get back home? I don't like to drive on unfamiliar streets because now it's requiring my brain to really pay attention and try to figure something out but that part of my brain no longer works like it did, so that's a really huge task, and I get anxious and upset.

Actually, I'm noticing more and more often that I can't focus. I've had focus and processing speed issues since my stroke but for awhile there I felt like while it wasn't getting better, I was learning how to function with it. Lately though, I'm dozing off and spacing out. I will start telling someone something and I trail off because I can't remember what I was going to say or what the point was so I can't keep going. It's really difficult and I'm really struggling with it.

Alright, so that's the scoop. Hopefully Lucy is on the mend and is getting healthier. I'm crossing my fingers.

I love to pee and sleep. Oh, and Lucy sees speech.

I think I mentioned last week that I would be seeing my Endocrinology and Pulmonary doctors this week and that they were the first in a series of follow up appointments. I'm starting to get really confused because I have appointments, Lucy has a bunch of appointments, and I have to schedule physicals for four kids and it is just a lot and I am grateful I have a planner otherwise I would be completely screwed. But here's what happened this week:

I went to Endocrinology and I really like this doctor. I have had him since I was still in the hospital after having Lucy so he's aware of all of my issues and how I ended up here. Let me just note that the doctors I have had since the very beginning are really the best because they have seen my progress and know the obstacles I keep facing. They are the ones that believe me when I say I think that all of my current issues are tied to my AFE. The doctors I've picked up along the way usually say, "Oh, OK. But lets talk about losing weight." and they discredit everything I say.

So I'll just put that out there.

This visit though was so bizarre. I had a lot of questions about my emergency room visit not too long ago and questions about weight loss. Unfortunately I got a lot of "I don't know" answers from him and basically, I left there with a bunch of questions still, no answers, and told to do what I feel like works. That honestly is not good enough for me because I really need to be given very concrete, black and white answers. My brain doesn't work with the vague stuff.

Also though- he was OBSESSED with how much I pee. He wants to know if I pee too much and honestly, I feel like I pee an OK amount. I'm not upset about it. If I have to leave the house for several hours, I curb my water and take half a pill of my medication. I take half a pill before bed. I try to always have ice cold water on me to curb cravings. He didn't like my answers so I also left there with two urine collection containers and a bowl to pee in so that's happening.

I had to get some labs done, of which I don't know how they came out because he hasn't looked at them yet, but then I walked across the street to Pulmonary.

Carrying my urine collection goodies and that was fun.

The Pulmonary doctor is really nice and I don't hate going there. The women who work at the check in desk are rude as all get out but the actual doctor is fantastic. He does talk to me like I have special needs or that I'm slow but it's kind of funny and it's fine. I breathe alright, my lungs sound super, I need to keep using my inhaler for exercise and use my CPAP every night and I can come back in a year. Easy peasy.

I also had a meeting with the Birth to 3 program in regards to getting Lucy some speech development help.

I really have put it off as long as I could and I have done everything I know how to do and tried a few things that have worked for other people and things I've see on child development websites and still- her speech isn't where it needs to be. The plan is to start her in a three year old preschool program (like Penelope is in this year) and though that doesn't start until September, other people can't understand her. For the most part, I can. But she needs help.

The Birth to 3 person is so nice and we basically spent out hour or so together filling out paperwork and Lucy napped. She has a formal evaluation with the speech development person and the child development person in two weeks and that will determine what she needs and how we're going to do it. The down side is that the cut off to get an IEP started is like 33 months, and she's like 32 months. And I don't mean cut off like she'll never get help but they have this deadline so that services are in place and organized for her before she starts school because once she turns three all development help gets transferred to our school district. So of course, cue the guilt that I didn't do this sooner, etc.

I know. I know you're like, "God Sara, relax. At least you're doing it now, it's not a big deal." Rationally? I know this. I'm not neurotic.

But I am anxiety headquarters and no amount of you saying that or me thinking it makes those thoughts and feelings go away.

It is what it is.

I also had therapy this week and that was tough. Every time I think it will be a pretty easy session and I'll keep working on things, something always comes up and I end up crying for an entire hour, then I cry in my car ride home. I cry that night. I'm a mess. But I know I need it so I keep going.

The sickness. AGAIN.

If you know us in real life you'll know I've been trying to figure out what's wrong with Lucy for years. Yeah, I said years. Since she was six or seventh months old when she got her first cold, she's had this never ending runny nose and goopy eye. Sometimes it clears up for one to three days but it always comes back and her one eye is never not swollen a little. Her face is really chapped and honestly I can't tell if it's eczema or just dry from wiping her nose all of the time. 

It honestly could be either. 

Last week though it was just really the worst. 

It started with a small runny nose. Nothing too crazy, just an annoying drip periodically, but her eye was really swollen.  

 Another day she went to the ophthalmologist because her doctor thought maybe her eye issues (swollen, goopy eye) was from a blocked duct. It turns out he wasn't actually sure. He referred us to Ear, Nose and Throat (which we already had a referral for April 2) and told us if they couldn't help us, come back, and the only way to check about this specific duct was surgery, but in the mean time he gave us these drops to use 4 times a day for 4 weeks. 

Which sounds grand. 

 So we started that and honestly, her eye seems MORE swollen to me. 

 I will say though, she's s pretty lovable kid so she really just wants cuddles. She will let us wash her face and she really likes a warm washcloth on her eye and it's really the only way to get all the gunk off her eyelashes otherwise they harden and it hurts. 

 Then she woke up with a LOT of boogers. Enough where I had to wash her entire face first thing because they were literally all over her face and in her hair. 

Combine this with Penelope having blow out poops in her pull up and trying to handle it herself some time in the night. I woke up to poop EVERYWHERE in my bathroom, the hallway, her room, it was a SCENE. I stepped in it carrying Lucy to the bathroom because she stinks and her eyes are basically crusted shut. 

Actually, my entire week was like this every morning and it wasn't great. I went to bed completely exhausted every day last week. 

Anyways. 

 So Lucy really wasn't feeling well and she had a LOT of boogers and she had this really low fever all week. On Friday I had Matt take her to Urgent Care while I stayed home with the other three because I feel like at this point, it's got to be a sinus infection. Her cheek hurt, she said her teeth hurt (all on the side with the swollen eye) and she's miserable. 

The doctor there said there really isn't a test for that but he's going to give us an antibiotic because whatever she has will probably be knocked out by it. Which, alright. I don't think Lucy has ever been on an antibiotic but she HATES taking any kind of medicine and having to hold her down 4 times a day for one eye drop is traumatic for us all, so let's try to force an antibiotic down her throat. 

Yeah. No problem. 

 On Saturday she woke up like this and it scared the crap out of me when I rolled over and saw this. I took her to the bathroom and her one eye is totally shut, she's got a LOT of dried blood and boogers on her face and she's kind of whimpering. Like Jesus- I've never had a kid with a bloody nose. The only time I've ever had that was in tenth grade when I broke my nose. 

So I get her all cleaned up, we get some fresh clothes on and once I got her eye washed really well she could open it a little. So I go get her beloved blanket and penguin off her bed. 

 And see that she actually bled a lot because it's soaked through her pillow, all over the sheets and her big blanket. So now I'm washing bedding. 

My mom runs out to get me a small humidifier for their room because I'm thinking maybe it's just dry in there? I don't actually know but it's worth a try and probably good to have anyways. 

On day 4 or 5 of her antibiotic I'm seeing a little improvement. She doesn't have the massive amounts of boogers coming out but I don't know if it's the antibiotics working or if we're in a good stretch here. I just wish I knew what was wrong with her so she could be a perky lovebug again. She never really seems like she feels good, you know? 

Also, Matt took this picture this weekend because honestly, this is what every day of my life is like. If the big kids could get up here, they would, too. Everyone sits with me. I know people always say "I can't go to the bathroom myself!" and I really can't. I can't pee, I can't work on stuff, I can't eat, I can't go to another room, I can't sit and watch TV, I can't read, I can't even nap without someone wanting to be right on me. 

It's suffocating. 

I'm so tired. If it's not me with health issues, it's a kid. I can't keep anything straight or stay on top of symptoms of anyone. I feel like I'm missing little things that are actually big things. Then I feel completely paranoid. It's terrible. I have therapy next week and thank goodness. 

Medical frequent customer care card? It's an idea.

I haven't given you a health update in awhile and while it's nothing exciting, it's worth sharing even if only for my own memory later on. I keep saying there should be punch cards for every doctor visit you go to and when you get a free card you get a prize or a discount. Something.

Rheumatology: My doctor has officially retired now and they haven't hired a new one so I'm seeing a nurse practitioner in the meantime. That's OK, it's not like I'm a snob on who I see, and I really only go every few months so it's not a big deal. Actually I go every six weeks but whatever. At every visit I have to do a lot of lab work because I'm on Methotrexate and that's something that needs to be closely monitored apparently. My C-Reactive Protein (which tells them the inflammation situation in my body) is still really high despite being on Methotrexate. The current theory is that I do not absorb or process medications well (which makes sense because that's what other doctors think about other medications) so I need to start splitting my dose to see if that makes a difference. I've been taking my 8 pills on Wednesdays all at once in the morning, so now I'll do 4 in the morning and 4 in the evening and we'll see how that goes. If that doesn't work then my next option is injectable Methotrexate. I am NOT excited about this because I hate needles and I absolutely cannot do it myself. I really can't. Even thinking about it makes me anxious and I feel like I'm going to cry. I really can't do it. If I don't want to do that I have to do infusions of Remicaid/Humira/Enbrel, etc. I don't want to do that because those gave my mom cancer AND who has six hours to sit for an infusion? My options aren't great and I keep feeling like maybe I want to save all of that until I get worse? I mean, I can deal right now and if I am going to get worse, let's save all of this until then.

In the meantime, she gave me this ibuprofen cream? I had no idea this existed but it does and it actually kind of works. I used it on my hands, my back, and the tops of my feet and by god- it works. It's supposed to be direct application of the ibuprofen but without all of the side effects of ibuprofen that can make your liver angry. So we'll see how that is long term.

Gastroenterology: I see this guy again in May. I think after that appointment I'll have to schedule for my follow up endoscopy to see if my Barrett's Esophagus has changed, if I have any more inflammation anywhere, if the polyps in my stomach have changed or if I have more gall stones. They did an MRI a few months ago on my liver lesion but it didn't look like it changed but they'll check it out anyways I think he said. I don't know what to even think about any of that. I take my omeprazole every day and I don't know if it does anything, I never felt like I had acid reflux before but it's clear that I do, so who knows? I still have stomach pain all the time so clearly that wasn't the fix. I am going to ask about Small Intestine Bacterial Overgrowth because I have almost all of the symptoms and honestly? I look six months pregnant right now. I keep thinking maybe it's my steroids I take, and that might be part of it, but this is just ridiculous at this point.

Endocrinology: I see him next week and I'm sure he's dreading it. I have a LOT to ask him and honestly, I get the feeling that my case is so complicated and weird that he just doesn't have time for it. But the other guy doesn't want me either and they keep trying to make me go to the Mayo Clinic, who doesn't do regular check in's. They find the problem when nobody else can and send you back to your local doctor. The endocrinologists in the other hospital won't see me because I have too many other overlapping things and they won't see me unless I change all of my care over, which I'm not willing to do because all of my doctors are actually really good. So I'm kind of stuck. I absolutely, 100% do not believe my last ER visit was stomach flu. So he's going to hear about that.

Pulmonary: I get to see this doctor next week, too! He's actually really nice and I always forget his name and what he looks like, but I remember he's really nice and talks to me like I'm special needs. But this is, according to my planner, my one year follow up to see how I'm doing with my c-pap machine and how I'm doing with my inhaler for activities. I actually really suck at remembering my inhaler which explains why my lungs feel like they are seizing when I do exercise, but I put an inhaler near my TV and where my exercise bike thing is so hopefully that helps. But the c-pap machine is AMAZING and I love it forever.

Therapy: I won't lie, therapy is really, really, really hard. My depression is still really bad and I've not improved at all on my scales they make me do every few weeks. I get better in one area, get worse in another. Then they flip flop. Then something else will get worse when something else gets better. It's frustrating. I keep going every two weeks and I've never missed or rescheduled one. I'm trying.

Psychiatry: Oh, I see this doctor pretty soon, too. I have to tell him that while my irritability/anger/unstable mood is better (not great but better), the Ritalin does literally nothing to keep me awake/alert/aware. I have also noticed I have a weird inability to cry. When things happen and it's reasonable for me to cry, I can't. It feels like when you have to sneeze but you can't, and you're standing there willing yourself to sneeze? That's what it feels like when I want to cry. But then, out of nowhere, I'll cry about absolutely nothing and I have no idea what's going on. It's really weird and I don't like it. But the Ritalin thing is not good so I don't know if he will try to increase my dose or just switch  me to the next option, Adderall, which really scares me. I hear that and I think Lindsay Lohan and let's all see where that led her.

Overall? I feel like doctor visits have really slowed down, which is good. I feel a little more normal now. I think I am going to buy myself a really nice journal and start writing down every stupid thing that I feel or that happens. I'm finding that something will happen and I think, "Oh man, I'll remember THIS and tell the doctor!" and then I don't and when I go I just shrug my shoulders and say I have no questions. But a few days later I remember and I feel stupid sending a message to ask. I feel like I'm wasting their time and I hate feeling like I'm crazy.

Health Update: Rexulti, Eyeballs, Guts

I continue to struggle managing my depression and anger. I will say that a lot of days I can get through just fine, no angry outbursts, no rage feelings, but when it comes? 

It COMES. 

I have to assume I'm terrifying to my small children because I scare myself. 

At my recent psychiatry appointment, where we are tweaking my meds so I don't jump off of the bridge, we decided that we would stop the Abilify and in its place start Rexulti. I'm pretty much game for anything at this point, so I was fully on board. I only made it three days on Rexulti when I discovered it was giving me tremors in my hands, arms, and head. 

If you've never had tremors, consider yourself lucky because it's really disconcerting. It's like having Parkinson's, just uncontrollable shaking. 

Guess what you shouldn't do with that? 

Shave. 

Let's just say I lost quite a bit of blood over the weekend just trying to shave my damn legs. 

I sent my doctor a message that I was going to stop the Rexulti and asked if I should restart the Abilify or just wait? Luckily for me I was able to get a sample pack of Rexulti so I wouldn't be left with an entire bottle of something I can't use, a practice more doctors should do because honestly- I've spent hundreds of dollars and have a vast quantity of pills that I can't use. 

I really wanted to ask if I'm going to be dependent on these forever. Will I forever need medication to participate like a normal person in society? Will my depression always be here? I think I asked once before but I want so badly to ask again... I just don't because I'm kind of afraid of the answer.

I also got my annual eye exam, which is the first one I've had in you know... FIVE YEARS. I got the side eye about that but truly, my glasses were fine and nothing had changed.

Then, of course, I had my AFE and stroke and that warrants some checking. In case you missed it, I had my stroke in the left occiptal lobe, which is where your eye sight function is regulated in the brain.

I've noticed that my glasses aren't quite doing it anymore and that I need to wear my glasses more and more. Certainly I need them for driving, 100%. I need them to watch TV now otherwise I can't read anything and pictures are blurry around the edges. Reading is fine so I feel like I'm not totally ruined.

But because of the stroke they gave me a more thorough eye exam, which took almost two hours, and he has seen every part of my eyeball and I had the worst headache after leaving there. But it's confirmed, I need to wear glasses almost exclusively. I have a MUCH stronger prescription and I need to change my drivers license to reflect that I need to wear them while driving.

Next up, my GUTS.

I've been complaining about stomach issues for awhile but only recently has it gotten to the point where I think there may be something wrong with me. It's intense pain, enough to make me double over in pain and take something for pain.

I've tried going gluten free, probiotics, fiber, stool softeners, laxatives, you name it, I've tried it. Nothing helps.

So the thought was maybe it was the methotrexate that I take but my visit yesterday confirms it almost certainly isn't that. So now I'm back to square one with a message into my primary care, who likely is going to pass me off to a gastroenterologist.

Fun times. 

OT, PT, and Rheum, OH MY!

I have so much happening medically lately that I am (frankly) really overwhelmed. I feel like it would be really great to have someone to go to all of my appointments with me but then it feels like such a pain for people and honestly, pointless? Like what are they going to do? I'm struggling with being in control of as much as possible and coming to grips that I can't be in control because I'm just not capable anymore. I am learning that it's really hard to give up things and admit it's time to let go.

One of the things I really struggled with while I was hospitalized was physical therapy and occupational therapy. Matt says I was adamant that I absolutely didn't need either, there's nothing wrong with me, having a baby doesn't make me handicapped.

Clearly I didn't have a handle on what had actually happened to me.

I've gone an entire year not needing either and my therapist flat out said to me a few months ago that maybe, maybe, I need to reconsider that. That maybe my impairments aren't going to improve, but maybe there are modifications that could help me be less frustrated and angry about it. Maybe I won't be running 5k's and training for a half anymore, but maybe there are exercises I can do to make it less painful to get out of bed in the morning.

She isn't wrong. I know it in my head, logically, but dammit. I hate that this is what my life has come to. Needing modifications and exercises to stay mobile.

So last week I met with a physical therapist, Dave, and an occupational therapist, Anne, really briefly. I'll meet with Anne more maybe sometime this week even (my appointment has to be rescheduled since Friday we had a bit of a nasty winter weather day and they didn't want me to try to drive there), we'll see. Dave the physical therapist was really great, though. He wanted to know the whole story, he wanted to know what I was like physically before and since. What hurts, what doesn't, what happens if I do this or that, what diseases and conditions are ruled out and what's still on the table. He was really great and the best part? It's happened a few times with doctors but it really makes me feel like they get it, when they look me dead in the eye and say, "Your situation really sucks. You should be dead, I understand why you still wish you were and I can't say I wouldn't feel the same." I usually always come back with, "well, it could always be worse. I could be paralyzed, or have cancer, it can always be worse" and Dave? Dave just sat there and said, "I guess. But this is pretty bad and I understand why you're at this spot. I get it. It's pretty bad."

I felt so VALIDATED.

He said he recommends me to come three days a week for at least four weeks, and that's significantly more than he recommends for most patients but that I'm kind of a problem. So I guess we'll see? I left there with three stretches to do in the morning, two before I even get out of bed and one after I pee (because let's face it, my bladder is really, really, REALLY full when I wake up) and I haven't really noticed a difference? It's only been a few days though so I'm sure in another week or two I might feel a little different. I'm hopeful.

Rheumatology... sigh. I feel like I don't have a good read on this doctor at all. Some interactions make me feel like she feels sorry for me because I'm clearly crazy, and other times she makes me feel like there is something wrong with me, she just can't figure it out. So my labs were kind of a mixed bag so she repeated a few of them this week. My inflammation one is still high but something with my muscle is OK so she started me on Plaquenil to see if that does anything for me. That's a drug used to treat Rheumatoid Arthritis and Lupus, so now I'm like- I thought you said my tests were negative, why are we doing this?! After reviewing my family history and seeing my mom has RA fairly severely, she tells me that sometimes you can still have RA and Lupus with a negative test.

Honest to god, I don't know what to think anymore. I'm not kidding.

So I've taken that for like 3 days now, feel no different. I'm so incredibly tired though and I wish we could find something that fixes that. She wanted to start me on Prednisone and I just really, REALLY don't want to do that. It's another steroid, I have never heard of or seen anyone have a positive experience with it, I don't want to gain 50 pounds in two weeks, and I'm always angry and lashing out now, I can't afford for it to get worse on that. I voiced all of that and I told her I wasn't thrilled about it and I see she did not call it in. So maybe she listened? I'm going with that versus she forgot about it, because she seems pretty thorough so I don't think she would have forgotten.

But as you are reading this, I'm at the Mayo Clinic. Today I'm taking the fat kid education class in the Bariatric Clinic (mandatory before you can see one of those doctors) and then I am going to the Women's Health Clinic to talk about my estrogen replacement options. It's an exciting day, right? Well, I'll report back on the thrilling details later. In the meantime, I really hope that my appointments end early enough for me to get on the road before noon so I can take the kids Trick or Treating. I'll be really sad to miss that.