Day 5: Independence Day & Lack of Dolphins

The timing of this trip meant that we would be in Florida during the Fourth of July, which is my second favorite holiday behind Christmas. One of the things I've always wanted to do is spend the Fourth of July with my kids in Florida, specifically, watch the fireworks on the beach. It's one of the memories from my childhood I no longer remember, but I do remember that we did it. Just the memories of it are gone. I remembered that it was always my goal to do that with my kids some day and I thought, now or never.

I don't know how long I'll be around and I don't want to die without having done certain things with my kids. It doesn't seem like a big deal to most people, but my early childhood is fraught with not great memories so the things that did bring me happiness as a kid are a big deal to me. So my goal was to medicate and go outside, even though it was even warmer this day.

Our first stop was Clearwater Beach because the big kids wanted to go on a dolphin cruise. We do this every time we come to Florida, and we had cashed in our change jar so we could do this.

We had lunch right before, but this was happening during nap time so you know.. crapshoot with moods at this point.

Lucy was ALL about it though. It's not a good picture but this girl was so excited, especially when other boats went flying by us. She loved it.

Penelope didn't give a damn. She mostly excited about unlimited iced tea and the lei's they were handing out.

Olivia and Jackson were all about the animals, they really wanted to see dolphins.

Olivia was such a great helper with Penelope on the cruise because she was a handful.

Jackson was in charge of refilling my water and Penelope's iced tea, he did a great job.

Me with three of the kids, Lucy wouldn't cooperate.

The cruise ended up being a total dud because we only saw one dolphin, that's it. Previous cruises we would see tons of them so we know for next time to stick to the morning cruises and apparently, the kind of boat you're on makes a difference. But it was still fun and we got to see Clearwater Beach from the water, and it's a really pretty beach.

After that we headed up to my Uncle Stephen's and Aunt Cheryl's house for a cookout. This uncle was the one who oftentimes would watch my brother and I on the weekends when my mom would work. He would always cook certain things for me especially because I was such a picky eater, and sometimes he'd get us Happy Meals and those were the best weekends.

So we hung out at their house for a few hours and it was great. I had such a good time, the kids loved them, and it made me wish we lived closer. I wish my kids got to know my family better because they'd really love them so much.

After dinner we had just enough time to get to the hotel and grab the sand toys and find a spot on the beach for fireworks.

 Taking a picture with all of the kids looking is next to impossible but this... this is what I wanted.

I don't think Matt understands my excitement over something so small like fireworks on the beach, but when we were little we truly were poor. This was a big deal for us, we would spend the entire day on the beach, and I just wanted to give my kids this memory.

They were loving it. We saw Clearwater's fireworks to our right. St. Pete's fireworks to our left. A couple of families had larger fireworks than either city and they were dueling it out right in front of us. It was the best.

Olivia at one point looked at me and says, "I bet this is your favorite holiday because of the beach, huh, mom?"

Sure is, baby. Sure is.

Jackson was having a blast. This is my kid who falls asleep early always and he was so tired but he was loving every minute of it.

This was the first time Penelope or Lucy have seen fireworks and they didn't really care. They kind of watched periodically and I think they had no clue what was going on, they were just loving being back at the beach in the sand again, at night no less! 

It was easily the best part of the trip. I'll probably forget most of it but I hope I never forget the feeling I had that night.

Day 4: Almost a crisis, and family time

On the fourth day of our trip we planned to see family, specifically my grandparents and hopefully my Uncle Danny, Aunt Ginger, and my cousins who are one and two years older than Olivia. I had promised the kids that we'd go to the beach first thing in the morning and that, this time, we'd be swimming.

I was kind of worried because I haven't had any experience so far with my panhypopituitarism and adrenal insufficiency in the heat/humidity. I made sure to take my medicine early, I took a little more to give me a boost. I ate breakfast, drank lots of water to ensure I was hydrated before I went out. I covered in sunscreen, I had my sun hat, and Matt hauled over an umbrella from our condo. I was sitting in the shade, angled with a breeze hitting me directly, loaded with water. I was good to go.

The kids were SO excited and Penelope kept squealing because she knew she was going to be able to play.

The plan was to play until lunch time, so about four hours, and get the younger girls to nap before going to my grandparent's house.

Lucy eagerly tried to eat sand, crawled to the water with Matt.

I did go into the water for a little bit but the sun was so hot and I knew after just about 15 minutes I had to get back into my shady spot.

The big kids were busy looking for shells and Olivia actually picked up a crab that she thought was a shell! Matt came back because he said I was looking not so great, and I wasn't feeling so great.

Lucy was totally enthralled with the sand. Seriously, I can't tell you enough how much she loved sand. She was doing her cute baby scream while kicking it and it was the greatest thing ever for her.

Matt tried to buy Penelope but she wasn't having it. She didn't even want to bury him, she was all about digging the hole, though.

By the point, only an hour into our beach adventure, I was feeling really ill. I was nauseous, I was shaky, I had a headache, my gut wasn't doing well and I was mentally going through my crisis check list and it was clear- I had to get back and take more of my hydrocortisone tablets because if I didn't, I was going to land in the emergency room. So I told Matt we had to go and I must have not looked well because I've never seen him pack up our stuff so fast and we hustled. I took a freezing cold shower, took my medicine, chugged even more water (by this point, I had only been up for 3 hours and I had 15 bottles of water), and laid down.

I woke up several hours later and I still didn't feel well but the kids were restless and we decided to just go. We stopped for lunch and I couldn't eat because I was so sick and sure I was going to start throwing up (which would have been bad, really bad) so I just stuck to my ice water and hoped for the best.

Seeing my grandparents was great. I am so thankful we were able to do this trip because it was so important to me that they got to meet Penelope and Lucy.

You can tell Penelope runs the show and poor Lucy is the casual victim.

But nothing a snuggle from mom can't fix.

Some of my best childhood memories are with my grandparents. To the time my grandpa tried to wear my nightgown, to my grandma buying me Jem panties at Montgomery Ward, always having treats for us. My grandparents have the best sense of humor, will tell you like it is, and they have always made me feel like they were so proud of me. It was such a comfort for me to just be there, to talk to them, and to get a hug. I didn't realize how much I needed that.

And I had to get a picture with me, all of my kids and Grandma. I have no idea where Grandpa was, but this picture.. I love it so much.

For dinner we headed over to my Uncle Danny and Aunt Ginger's house, which is just down the road. The kids got to swim in the pool and I wasn't feeling great so I just hung back.

I'm glad the kids got to hang out with my cousins, who are basically their age so they are more their cousins than mine.

I got to talk about my journey and answered some questions about what life is like for me. But like everything, I'm pretty guarded and I don't share everything. I've learned in this year that people like the drama and the crisis of the actual moment but that wears off. Once that's gone and you're struggling with long term problems, people quietly shrink back and stop helping. Stop reaching out. I'm lucky in the aspect that I do have friends, near and far, who check in with me and ask what I need help with. Do I need things for the babies? What about the big kids? Can we help with groceries? It's not as often but it's still appreciated. I try to make a joke out of it because if I don't it's just one more thing to bring me down, but we're broke. We are barely getting by and the amount of guilt I feel because I know it's because of me, because of my health problems, is immense. But I try really hard, though it doesn't always seem like it, to not share too much because I know people don't want to hear it. It's depressing. If people knew what my day to day is like inside my head? You'd be suicidal too. But I'm trying every day. If I could just switch it off I absolutely would because I wouldn't wish this on anyone. Not for anything.

But Day 5 was the Fourth of July. We got to bed early because I wanted to feel better to do something. I went to bed absolutely sick to my stomach, which was concerning because I had taken triple my dose of medication, as I would for the next three days as protocol for the situation, and I didn't feel any better. I went to bed kind of scared but also at the same time thinking, if this is how I go, then so be it.

Day 3: Finally, FLORIDA!

We woke up on day 3, totally ready to go. The sketch hotel had a really terrible breakfast so we decided we would eat at the quintessential breakfast place of the south: Waffle House.

It was as great as I remembered. (Which, admittedly, doesn't say much because I don't remember but I do remember that this was a place we went to when I was younger so it was on the list of must do's for this trip.)

We drove for a little while and then we saw signs for Florida, the kids got immediately excited. I told Matt we would stop at the visitor center, I would get brochures and stuff, see if I could get coupons or something, and let the kids go to the bathroom. Turns out they have a photo op spot so we got in line, much to Matt's annoyance but he went along with it. And some really nice lady took our picture.

Which didn't turn out great, but we don't have many family pictures and it's hard to get four kids to look in the same direction at the same time, so we take what we can get.

The big kids' excitement wore off a bit when they realized how much further we still had to go. Our destination was Indian Shores, Florida which is smack dab between Clearwater and Madeira Beach, minutes away from St. Petersburg, which is where I was born and lived for awhile. And every time I go back I always felt home. Matt and I honeymooned on Madeira Beach but my grandpa drove us to St. Pete Beach, which is where we spent so many days as a little kid. I don't remember the visit but I have a picture of me standing there looking out into the water and I wrote next to it that I felt at home.

Which, I'm going to be honest with you. We financially, could not afford to go on this trip at all. But I had a lot of reasons for going. First and foremost dying does something to you as a person, it changes who you are, and I have had this feeling in me that I needed to see my family. You know how when something happens you just need a hug? Well I just wanted a hug from my grandma and grandpa. I also had to get away from home. I feel like I've been a prisoner in this house for a year and despite my trip to Vegas with my friend Tammy, I feel like I never get to leave except for doctor appointments. I used to be adventurous. I used to do things, be social, I used to live life. I was just desperate to LEAVE. And I have a third reason for wanting to go, but I'll save that for my book. (I know, I'm just so mean.)

But we drove. Once we got closer to our destination I saw the pillar for St. Pete and I expected to feel something...

... and I didn't feel anything. It was strange.

I figured I was just exhausted, and I most certainly was because by this point it was a little after 6, we were all hungry and tired. Finally, we reached our hotel for the week which ended up being a two bedroom condo. I had no idea that's what I booked but apparently when I did this way back in March I had some kind of rationale, or maybe that's all that was left, I have no idea but let's all just appreciate the fact that my post AFE brain actually worked in our favor for once. The place was called Barefoot Beach Resorts and I would absolutely, hands down, highly recommend it.  The place is gorgeous and it comes with a kitchen (with dishes!) and the closets had beach chairs and umbrellas.. and the ladies in the office were so kind. Truly. This was such a great place, I would absolutely stay there again and recommend it. It had beach access right across the street and that's pretty much what we did all week.

We sent Matt off to go get us pizza dinner, which ended up being super delicious AND cheap (and just down the street), and I busted out the wooden blocks I bought before our trip that I had hidden in the van for the sole purpose of entertaining them in Florida.

It turned out to be genius and it worked super well.

Lucy was more excited about dragging items across the tile floor, but once she realized she could kick blocks far on this floor, she was all about that.

The kids doled out room assignments, but we learned that Penelope, Olivia, and Jackson cannot share a bed together because it ends in laughing and someone crying. So the week was spent with Matt and Jackson sharing a bed with Lucy in a pack and play in the corner, and then me, Olivia, and Penelope sharing a full size bed in the smaller room (with the beach view, so I'm not complaining). I don't think I need to tell you that I got next to no sleep all week except for the nap I took one day because I was so tired my body couldn't go any longer.

After dinner, and by this time it was close to 8:30, but I told the kids we could go to the beach for just a little while. I didn't bother with swimsuits because we weren't going to swim, but I brought our new sand toys and I wanted to watch the sun set.

Olivia and Jackson have been to the beach a few times so their visit wasn't documented as much. But Penelope and Lucy had never seen the Gulf of Mexico but they LOVED IT.

I am sure that every citizen of Indian Shores, at least anyone with a hotel room there, heard their happy squeals because these girls were all about it. And immediately got drenched from head to toe. I should have brought the swimsuits. Rookie move.

Lucy was totally enthralled with sand, and the water coming up to her. Penelope tried to conquer the waves, it was hilarious.

After a little while, Lucy crawled back up to me and started digging through the sand toys, which she doesn't get to do at home because the sandbox is a standing one and she's a little too little still.

I just sat and watched and her and thought about what a freaking year we've had. How she'll never know the mom I used to be. How she will always have this watered down version of the mom I wanted to be because that's all that I have left in me. Her birth did a number on me and so many times I've been asked if I knew then what I know now, would I have had her? And I have always said, she wasn't planned. She was 100% an accident baby, a baby who came to be despite Plan B (two of them!) and four was never in the plan for us. I don't regret her, I would always choose her because I think there's a reason this little nugget is here. This special little girl is here, and she is such a sweet, lovable little soul. She's meant to do something in this world, I just don't know what it is yet. So I would always choose her. I just don't know that I would choose me to have survived. That has been my crux in therapy this year. It's always been me. 

But this girl... I feel like she gets me. And she doesn't expect more from me. She knows that all I can give is what I've got and she's OK with that. She loves me anyways.

Then there's this guy. Who drives me fully crazy sometimes, but he loves me too. In his own way. Which isn't the way I always need, or want, but I have to learn that sometimes as people we can only give what we've got and give it in the way we know how. So I have to really give him props because this year has been tough on him, too and we're living the whole "in sickness and health" bit. It really sucks but we're doing it. Some days aren't so bad and some days are really awful. But we go to bed each nice with a kiss and we know that tomorrow... it's a toss up. We don't know what it's going to be. But we're doing it together.

So while I was reflecting on the beach, quietly crying to myself, these two clowns were drenching themselves.

Penelope was having the time of her life.

So much so that we would end up having to physically carry her off the beach. In fact, we had to do that every time we left the beach- she's definitely a sunshine and beach gal. She was never meant to be cooped up in the harsh winters of Wisconsin.

Matt took pictures with his phone to prove that I also was on vacation. I don't have many pictures of me from this year because I hate what's happened to me physically. I have gained so much weight because of the steroids I take to stay alive, and I hurt everywhere so any type of exercise leaves me bedridden the next day. Needless to say, I feel terrible about myself, but that's for another day.

But I'm glad he took them because I also feel like I have hardly been a mom this year. I've been a mom, obviously, but I'm just going through the motions. It shows me being a mom.

It also shows that Lucy, indeed, ate her weight in sand this week.

Sigh.

Oh!! The super cool thing the kids loved? We saw two turtle's nest areas on our beach!

The kids were so hoping we'd get to see them hatch or see evidence that the turtles made it to the water during our week but no, we never got to see that. But it was very cool for them to see a turtle's nest and they would check it out every day for progress.

At the end of a VERY long day, we watched the sun set into the water.

I thought about the week to come. The year I've had. And how lucky I was that I made it. I made it through the hardest year of my life.

Day 2: More Illinois, but also Kentucky, Tennessee, and Georgia!

I underestimated how long of a state Illinois is. I also had no idea what a shit show of driving this day was going to be. I decided I was going to drive all of this day as well and I assumed that it was going to be fairly uneventful because it was going to be straight highway, nothing to see here.

I would be completely wrong.

First of all, this is the day that the kids started to lose it in the car. And by lose it, I mean the younger two. The older two have done road trips plenty of times with us and frankly, at ages 12 and 9, if I tell you to shut the hell up and entertain yourself, that's mom speak for take a nap and be quiet.

Everybody knows that.

The younger two haven't learned that yet so this was the day that Penelope decided to test the full strength of my medication that I was weaning off of by screaming at the top of her lungs for no reason. 

Lucy, for her part, screamed in unison because that's just what you do with your sister apparently. This is a fun thing she does even still and it's a real treat.

There were so many times on day two that I thought I was going to legitimately lose it. At this point, it was dinner time and I think we were firmly out of Kentucky and we had entered Tennessee, decided to stop at a Sonic for dinner. Treated the kids to slushies and we all wondered why everyone raves about Sonic because it was over priced and pretty gross. But we had also been trying out milk with Lucy because it's easier to do than formula in a moving vehicle and at this particular moment we had to air the van out because the smell of her poop was so incredibly bad not one of us, except her, could stand to be in the damn van. Honestly, the van still has a faint odor of Lucy poop.

After our lame dinner we got back on the road and that's when it was basically all winding down to shit show proportions. First, we discovered a few things about Tennessee drivers that set them apart from everyone else: they drive with their hazards on when it rains and they brake for no reason on the highway. I'm talking, come to a complete stop. This wasn't just a weird one time thing because it happened on the way home too, which I'll tell you about later. But we'd be driving along and BAM! Everyone is coming to a full stop, no reason. And of course, you have people who aren't paying attention so they are so close to rear ending others (accidents everywhere in Tennessee) so to avoid that, they veer off into the ditch at full speed.

It was terrifying. 

I also have to say, I am really disappointed that the two things I wanted to see as road side attractions (Ruby Falls and Rock City)? I didn't get to see because they were either closed because we got there too late or Matt didn't stop (on the way back). I was bummed. But props to Tennessee because Ruby Falls is basically their Wall Drug as far as road side marketing goes.

But it got really dicey once we got into Georgia for me because it started to rain. Normally this wouldn't be a big deal but I'm driving in an unfamiliar area and by the time I recognized that I was struggling, I wasn't in an area that I could pull over and switch with Matt. We were in a construction zone, it was torrential rain- you literally couldn't see anything at all, and all of the cars were doing 40 in the 70 mph area. I was terrified. Combine this with two screaming kids in the back and I was on the verge of tears myself, if we're being honest. It was like this for almost two hours and by the time we drove out of the storm my blood pressure was such a mess I am so surprised I didn't stroke out or something.

At this point, we were just outside of Atlanta and our goal was to get to Macon, Georgia for the night. As soon as we were driving through Atlanta, it was pretty clear we weren't going to get to Macon. We'd get close, but not all the way there.

You know that part in every classic Chevy Chase movie where he starts losing it and he starts laughing like a maniac? That was me as we struggled to find a hotel that night.

That night we ended up in a really sketchy motel under a highway overpass in between Atlanta and Macon. It was literally the only option and this place was dirty. Keep in mind, we're a group of six people, we smell, we look like hell. We've got two crying kids who absolutely need baths because they reek of poop, and two older kids who look road weary, me with my diaper rash boobs and toilet paper now shoved under my boob because the cream wasn't doing it, and Matt- who was trying to keep it all together. He asks the lady if they have a pack and play, and this lady says to him, "People usually travel with those."

I don't know WHY, but it maybe has something to do with being punch drunk, the smell of the van, being deliriously tired, or the fact that we had been listening to crying for hours at this point, but I started laughing. And when I say laughing, I mean, I lost it.  I almost peed my pants. The look on Matt's face, it was absolutely blank like he wasn't playing around, he didn't care if she was joking but it was clear to this lady that he was absolutely no mood for jokes or attitude, he just wanted the freaking pack and play. But it was hilarious.

What was not hilarious was the fact that six people got to share two full size beds. It's bad enough to share a bed with your kid, and it's pretty awful when you have to share a bed with two kids, but when you have to share a full size bed with two kids? You cannot apologize to your organs enough. Matt got to sleep with Jackson and I had to sleep with Olivia and Penelope, which wouldn't have been awful if I didn't have a pee diaper in my face for half the night and then when she rolled over, she decided she needed to use my hair to rub in her ear. But we can snuggle up to me, oh no. She has to pull my hair. I swear, my scalp is still sore because I endured having my hair pulled the entire trip because that was the only way I could get her to go to sleep.

Day 2 was rough. But we knew the next day we would be getting to our destination: Florida.

Day 1: Wisconsin and Illinois. Illinois never ends.

When we planned this trip I didn't really know what I was doing. Old Sara would have planned this entire trip out so much better, she would have had activity bags, planned stops, fun car games to play, and I would have had hotel ideas planned all along the way.

By me saying this you can safely assume that I had none of this and that we winged it. And it's true. We absolutely winged it. We survived, but it was trying and maybe not the smartest thing a person weaning off of an anti-depressant medication to do. 

What? Oh yes, as it turns out we think the culprit for my tingly and numbness could very well be the Topomax that I've been on, my psychiatrist thinks it's actually messing with my nervous system in a bad way so the plan was for me to start weaning myself off of that but increase my Strattera to help with my tiredness and cognition. But when we left on Friday, I felt good. 

 Penelope was clearly ready to go.

Olivia and Jackson were ready to go. Lucy was happy and ready.

We got kind of a later start than I wanted but that was because we ate breakfast at out usual time and packed the van, got everyone loaded up and we hit the road!

By the time we got to southern Wisconsin people were starting to already getting antsy which isn't a good sign considering how far we had to go. So we got out at a rest stop, and let the two little ones burn some energy.

Which, shout out to Wisconsin for having play structures at some of the rest stops because this is a BIG deal. You don't realize this unless you're in a car with a couple of kids who are in desperate need of burning some energy. They went down the slide, climbed a little bit, and we played in the well maintained grassy picnic area.

It was one of the nicest rest stops we stopped at, aside from the one in Florida, and that's saying something because we stopped at quite a few.

You can tell that by the time we got to Illinois, which was around dinner time, we were all kind of tired of driving.

Except me. I was doing a really good job. Yup, I was actually driving the first leg. I decided that I would drive highway portions and when it came to us driving in a city I would leave that to Matt because that would be really difficult for me. So I wanted to do as much as I could to feel normal and do what Old Sara would do. Old Sara would have powered through this road trip, no problem. 

We drove and we drove. We drove until about 10:00 p.m. until finally I looked at Matt and said I couldn't go any further. He agreed and we decided we would try our hand at winging it with a hotel. As it turns out, we were in the middle of nowhere Illinois so we stopped off at the first exit because wherever we were was remote and there didn't appear to be anything anywhere sooner. The exit ended up only having one hotel option with a room price under $200 (our goal out of necessity was to not pay over $100 for a room because when I say this trip was on a budget, I'm not joking). It ends up being a Holiday Inn Express and at first sight, not bad. Smells a little odd, but the front desk person was very kind, gave us a "corporate rate" and wheeled up a crib before we got the suitcase out of the van and it was great.

We all crashed. In the morning, my plan was to take a shower because I felt so gross. 

Then we saw the shower head, which hadn't been cleaned in weeks and no thanks. Absolutely not. We just packed our stuff and left. In fact, I didn't even change my clothes because I realized I didn't plan well and didn't pack enough of anything so I realized that driving days? I would be wearing the same clothes.

Oh! And after a quick check by Matt we discovered I had the worst diaper rash under my left boob. Odd, right? That's what I thought. Apparently between my new bra and the seat belt pushing my boob down, plus the heat/humidity it was the right environment to bread a nasty rash. To the point where I was in desperate need of diaper rash cream and it had to be a priority stop before we got going on the road.

But little Penelope proved to be a professional traveler. Hauling her own things in and out of hotels with ease. I learned on this trip to just ignore her because she is going to have a full melt down no matter what you do so you need to just go with it and hope that other people don't stare too much.

So that was our first day. Lots of driving and diaper rash. 

We're back! But first.. Matt gets to sleep with Darth Vader.

I know I promised you pictures and stories of our trip to Florida and those are coming! I'm still sorting through them and I want to get the ones from Matt's phone because he actually took some, you guys! I know, and he took some candids of me and though I look terrible, I'm going to share them because that's where I'm at in life.

I look terrible, but I'm living life anyways.

But before I do that I want to give you an update because someone asked me the other day how my sleep study went, and I didn't have any information because I didn't have a follow up yet. Well, that follow up appointment happened today so I have stuff to share so let's chat before I forget about it because if I don't get this information down somewhere, it's gone. It's literally gone and here is as good a place as anywhere.

So way back on my anniversary (June 12) I had my first ever sleep study done. It's no secret that I am exhausted all of the time. And when I say exhausted, I am not kidding.

And yes, this is when everyone then says, "Oh I here you, I'm SOOOO tired too! Ugh!" and I roll my eyes and want to punch you in the face. Sorry, not sorry. I know I sound like a broken record when I go on and on about my stupid pituitary gland, but the super fun thing about having panhypopituitarism is that nothing works. I have no cortisol and that's a big deal. Normal people still feel groggy when they wake up but eventually you get going in the morning because your pituitary gland is like, "Oh hey, it's morning! Lemme help you out there, buddy!" and gives you a boost of cortisol and that's what gets your entire body moving. You get a couple of these boosts a day, it's like when you get a second wind- it's your body giving you little shots of cortisol. I will never have that. The only thing I have is the steroid I take, which is what keeps me alive, and it's not nearly as good as the real thing because I am DRAGGING.

Which brings me to the sleep study. The whole point was to figure out if my excessive fatigue is because of my adrenal insufficiency and panhypopituitarism or if I also have sleep apnea on top of it making me even more tired.

The night of the the sleep study was kind of awful because it took them a really long time to get me hooked up to everything correctly. Most everything went on OK except for the things that go in your hair. My hair is very thick and wavy so they couldn't get the correct readings and it took almost two hours of tinkering and moving things around before they could let me go to sleep. Needless to say, by midnight (when I was allowed to finally fall asleep) I was dead tired. So tired, in fact, that I didn't roll over at all in my sleep. Not once in seven hours, which I can tell you right now is not normal for me. I left there absolutely exhausted. The whole day I was tired.

Today I learned that while I didn't register on their computer enough to wake me during the night to try the CPAP machine during the test, I probably should have one at home to try for the next ten weeks. I have mild sleep apnea, but the fact that I am so excessively tired despite taking my medications and taking a daytime stimulant already (which hasn't helped me, even at an increased dose, in fact I haven't noticed any difference at all), he's recommending that I get the machine and try it. So that's what I'm going to do. At this point I'm so desperate for some solid sleep I'll try anything. I can't even tell you when the last time I woke up in the morning feeling like I could actually take on the day. Well over a year. Possibly two. It's been so long.

So that's how my appointment went. Wednesday I go to Neurology for an EMG and I am very nervous about it. I made the critical mistake of looking it up online and pretty much everything I have read tells me this is a painful procedure so yay! I can hardly wait. But I have had the tingly and numbness in my arms and hands, but also my feet and we have to figure out if it's medication related or if it is a form of neuropathy. I have reduced the dosage of the medication that we think may be the problem and that has been absolutely awful (more on that later) and I still have the sensations, not nearly as bad but it's still there. So I don't know. Part of me wants to just cancel the procedure and say it's the medication, crisis diverted but then I think, what if? What if it really isn't and I'll just need the test anyways? I may as well get it done now while my deductible is met because god knows what's going to happen next year with health insurance, right? I don't know.

What I do know is that I am 100% sick and tired of feeling like a lab rat, like nobody knows what's wrong with me. I am tired of feeling like absolute crud. Everything on my hurts, all of the time, I feel like death is warming over and it's tiresome. To be told this is the best it's going to get is really awful and I can't imagine this being any kind of quality of life, to be honest.