Tired.

Today I am at a doctors office for the second time this week. Yesterday it was a follow up for my gallbladder surgery. Today it is the ophthalmologist. I feel like I live at the doctors--one doctors or another. And, frankly, it's not where I would choose to live. My doctors are nice and all, but I would much rather live in a place with exposed brick, exposed beams, a big kitchen, and a hot tub. Not a place that smells like alcohol preps, has machines everywhere that look like they could be some form of medieval torture and come with phrases like "just put your face here and try as hard as you can not to blink while this is in your eye," and leaves me questioning myself on whether or not that pain is better or worse than it was last month.

I'm tired.

I'm tired of confirmation calls and "would you like morning or afternoon?". I'm tired of "Miss Burbank you can come on back" and I'm tired of "we'll see you in a month."

I'm thankful for "you have no copay" and I'm thankful for "your insurance will cover this one." I'm more thankful for that than you know. I know how lucky I am.

But I'm tired.

I'm tired of "sorry, I can't, I have a doctors appointment." And I'm tired of "it will have to be next week--I have three doctors appointments this week."

It's exhausting.

If you know me, or if you've been reading my blog for a while, you know how much I hate the phrase "it's not fair"...but right now that's how I feel.

It's not fair that I have to keep my body working through the hands of doctors, science, and medicine. It's not fair that I have to rely on someone else to keep me alive. It's my body--but it's not.

I am not wavering in my thankfulness. I will never stop being hopeful. But man, I am tired.

Merry Christmas--even if it doesn't feel so merry.

(Just a disclaimer: I know it's Christmas. (I'm actually writing this in the middle of the night between Christmas Eve and Christmas, but when you're reading it it will be Christmas.) And I know that writing a not-so-happy post on Christmas seems weird and could easily be construed as complaining. But I am not complaining. I am writing this for anyone who might be reading it and feeling the same way I am right now. I've gone back and forth in my head about writing this post. Quite a few times. Like, probably 28. But I decided to go for it. I am lucky enough to have this platform to share my thoughts and I'm going to use it. I am extremely fortunate to have the life I have. I am extremely fortunate to be celebrating the Christmas that I am with the family that I have. But Lyme doesn't stop for Christmas. And that why this post is happening today.)

First of all, hi! If you're reading this on the day that I'm posting it, Merry Christmas if you celebrate Christmas! Happy Hanukkah if you celebrate that, as well! If you don't celebrate either, then just hi!

As I'm lying here writing this, I feel 9/10 miserable. My legs ache so bad I don't know if I could stand up if I tried. I have costochondritis pain so bad in my chest that I feel like I'm being simultaneously stabbed in the sternum and sat on by 3 full size elephants. My eye is falling to the left because it's tired and I'm not wearing the glasses with the prisms that hold my eyes straight (that are also failing on me because the muscles in my eyes are getting weaker just like the muscles everywhere else) making even writing this difficult if I don't close my left eye while I look at the screen. My brain feels like it has fire ants in it. I'm still recovering from gallbladder surgery and everything that goes along with that. And the anxiety inside of me is building and building because I know that once I'm back to my baseline after my gallbladder recovery, I will start Lyme treatment again. Fifteen months of treatment.

It never ends.

It doesn't matter that I'm writing this on Christmas Eve. All of the symptoms that I'm feeling right now don't care one bit. It doesn't matter that it is Christmas. Lyme doesn't go away. It doesn't take a break. It doesn't have a day off. I still have to get dressed in my Christmas outfit, look presentable, tell everyone that I'm feeling okay (or even worse--that I'm feeling better) just because I look nice. I have to talk to everyone about my life. I have to smile and do all of the things I'm supposed to do. While my head is pounding just from keeping my eyes open. While my bones feel like they're cracking under me. While my surgery incisions feel like they're ripping apart every time I go in for a hug. While my anxiety is sky high just waiting for the time I go to answer a question and can't find my words--the time I have to think on the fly because I don't know the answer to something I should know the answer to--the time my brain doesn't feel like it's mine at all.

Lyme doesn't care.

And it's exhausting. And if you're feeling the same way today, I feel you. You aren't alone. It's hard. Holidays are wonderful and terrible at the same time--and that is okay. Let it be okay. Let yourself feel the way you need to feel.

Lyme doesn't care but I do. I believe in you. You can get through today. I know it.

Merry Christmas--even if it doesn't feel so merry.

Thoughts on gallbladder surgery--1 week later.

I had my gallbladder removed one week ago today. I have a lot of feelings. I don't miss it. I never really had a relationship with it, per say. I didn't even think about it until a couple years ago when it started causing trouble. For being such a little thing it sure did cause a lot of trouble, though. And, in true annoying gallbladder fashion, it sure has been quite a painful week recovering from it's exodus from my body.

Let's start this one-week-recap with why I had to say goodbye to my gallbladder, shall we? Most people who have their gallbladder removed have it removed due to gallstones. I didn't have stones. In my case, my gallbladder basically stopped functioning. When it was tested, it was functioning at 2%. When my doctor saw that number, she laughed (and then apologized for laughing), high-fived me, and told me I had the record for the worst number she'd ever seen. (So, yay me?) The low gallbladder function was due to the muscles around it not working to let it do its job. The muscles weren't working because of, you guessed it, my Lyme. I started having gallbladder symptoms around 2 years ago. It was scanned for stones and then ignored. Two months ago, real action was taken on it, and that's when it was discovered that it needed to go and it needed to go now. Bringing us to where we are today!

So, one week ago I went in for surgery. I had a recommendation for a great surgeon. I felt totally comfortable with him. And he was super cute. (Not actually relevant, but definitely a perk.) The anesthesiologist understood, and actually told me, that since I'm a redhead I was going to require more anesthesia. And, after waking up during a previous surgery, that was super comforting to hear. I went into the operating room with her, one super sweet nurse, and then met another super sweet nurse inside the operating room. They switched me over to the operating table, started covering me up with blankets (which left me wondering how they were going to reach my stomach to get my gallbladder but I figured I would be asleep and it wouldn't matter to me then) and then my dr came in. They put the pumps on my legs so I wouldn't get blood clots during surgery, I heard them counting and double counting the tools they were going to be using, and then the anesthesiologist started giving me some medicine. I told her I was really nauseous. She told me that was normal for redheads at this point and she gave me another medicine for nausea. Then she put an oxygen mask on me. And next thing I knew I was waking up in recovery.

The first thing I remember is asking for my mom. I may be 26 but I always want my mom when I wake up from surgery. They told me I just had to stay in recovery for a little longer and then I could go see my mom. They offered me water and graham crackers and that sufficed. Sorry, mom. I just really like graham crackers. ;) They told me I was really good at waking up, which I'm always told after surgery. I guess it's good to be good at something, huh?! So they took me on to where my mom was. Once I was there they told me I could go home once I was able to pee. So I went home pretty soon after that and don't remember much of the rest of that evening.

I'm one week into this recovery journey and when people ask me how I'm feeling I say I'm feeling okay. But if you want to know for real I feel like I have been hit by a truck and also stabbed in the abdomen by five ice picks. It feels like the ice picks randomly are pulled out and stabbed back in. And it feels like the truck randomly comes back and backs over me. It feels like what I assume an intense core workout would feel like. (Let's be honest, I've never done an intense core workout in my life.) And it feels like there's a fire inside of my stomach that is just constantly smoldering. Some days feel a little better and some days feel a little worse. And that's okay. I'm still healing. I'm not even allowed to drive yet. I can't lift anything over 10lbs. If I were working I'd still have one more week that I wasn't allowed to work. And I still have a special diet for at least 3 more weeks. I'm one week into this recovery journey and I'm trying my best not to push it.

The last week has been trying. It's been painful. It's been exhausting. It's taught me how much you use your abdominal muscles for things you never would have thought of. It's made me really appreciate my bed. It's made me really appreciate the short distance between my bed and my bathroom. It's made me realize that I push myself more than I should and that it really is okay to rest and let myself heal. It's made me remember that it's okay to cry. It's made me angry that Lyme has done this to me. But it's made me thankful that someone finally took it seriously. It's made me thankful that there was an answer to the gallbladder pain. But it's also made me frustrated that I'm having to go through all of this pain to get to the fix. It's made me anxious to see what the end result is. It's also made me anxious because my next Lyme treatment starts at the end of this recovery. It's made my hopeful. But it's also made me feel helpless as I watch people have to do things for me. It's brought about a lot of emotions. But I'm thankful to be able to feel them.

Peace out, gallbladder.

Holidays.

Holidays are tough. There are a lot of feelings that come along with them. There are a lot of expectations that come along with them--from other people and from ourselves, as well. And there can be a lot of disappointment that comes along with them if you aren't careful.

Be easy on yourself. Do what you need to do for you. If you can't do it, don't. If you can't keep up, don't push yourself. The thing about a holiday is that it's just one day. You have to get through it and then keep going afterwards. So, if pushing yourself through it means you can't keep going afterwards, don't push yourself. Gauge it and do what works. Like I said, it's just one day. You have a whole life ahead of you.

If you feel like your family is going to be upset with you if you don't make it, talk to them. Explain why you aren't coming. You don't owe them anything, but an explanation never hurts. Chances are they really aren't going to be upset with you, though. They love you and want you to get better. In most cases we expect more and are harder on ourselves than anyone else. A lot of the expectation is in our own head.

If you are reading this and are alone today on this thanksgiving holiday, you are not the only one. I am alone today, too. I could not do it today. And that is okay. If you could not do it today, that is okay. We will get it next time.

I believe in us. Happy thanksgiving.

Hey Rachel...

Hey Rachel...

I hope wherever you are they have a good wifi connection and you can read this! I hope you've had a good year--free from the pain, the illness, and all the things that this ugly disease brings us. I'm sure you're much happier. I know you are, actually. I know a lot of people miss you here, though. Just from the few times I was lucky enough to talk to you I knew you were something special. But during the past weekend when I was lucky enough to spend the weekend with your beautiful family I learned it a lot more. Your pictures are still up in the hallway. Your towel hook with the "R" on it is still up in the bathroom. Your 16th birthday candle is still in the bag of candles. And they talk about you a lot. They told me over and over that I reminded them of you--that was a pretty cool compliment. They aren't dwelling on your death; they're honoring your life. You have a pretty cool, crazy family. But I know you know that.

I love your sister. She's one of the greatest people in my life. Her friendship has gotten me through things that I don't know if I would have gotten through otherwise. But more than anything, she loves you, Rachel. She loves you and she misses you. But she's stronger now. She's had one hell of a year but she's one hell of a fighter. And I know you're just as proud of her as I am. Keep watching over her and sending her strength.

We talked a lot about you this weekend. Were you eavesdropping? Do you already know that? We talked about the fact that you left us because you were limited by your sick body here on earth. You couldn't do what your soul needed to do. You were held back by your illness and couldn't achieve the things that your big heart and your amazing soul needed to achieve. So you moved on to somewhere that you could make a bigger impact. It's hard for everyone you left behind but as long as they can have that mindset, it makes it a tiny bit easier.

You're truly one of the lucky ones. You are free from the pain and the suffering of this ugly disease. You aren't held back by something out of your control anymore. You are free. Free from the poison that we pump into our bodies. Free from the ongoing doctors appointments. Free from the judgement. Free from all of it. You still have so many people that love you, Rachel. You will never be forgotten.

Fly free. You deserve it.

"Okay, is that it?"

Today I was at the doctor's office and I caught myself saying something that really hit me.

There was a new tech and she was inputting information into the computer system and she asked me about my medicines. It was a simple conversation that went like this:

Tech: "are these meds listed here the ones you're still taking?"

Me: "no, the first two I don't take anymore. The dose on the third one is changed. The next few are fine. And then I have some more to add."

She then proceeded to change everything I told her and said "okay, is that it?"

And I half jokingly said "I think so? They change so much I don't really know anymore."

Now, I do actually know because I have a list in my phone of my current meds. But what hit me what that when I said it she laughed. And I laughed. But the reality of the situation is that I don't remember a day that I wasn't on some sort of medicine. I don't remember a day when I could carelessly go through the day without having to think about if I took my medicine, or if the reason I'm feeling the way I'm feeling is just because of a medicine change or if I need to be concerned, or if I need medicine refills. I don't remember the last time I could stay at a friend's house without having planned it ahead of time because I have to have medicine with me at night. I don't remember the last time I could just go a day without being reminded by those medicines that I am, in fact, really sick.

And, don't get me wrong--I'm thankful. I'm thankful for modern medicine. I'm thankful that I live in a place where I'm able to get to a pharmacy and to reliably get the medicine that I need. And I'm thankful that I have insurance to help me with it.

But damn.

It would be so incredibly nice to go one day without thinking about it.

And I live for the day that I can finally say..."you can take all of those off the list."

I'm back. Again.

When I decided to take a break from blogging a couple of months ago I did so for one reason--I felt like my journey was becoming a burden. I felt like sharing my Lyme life was making me lose the last few people, the last few friends, who were still hanging in there with me. And I didn't want to risk losing even more than I already had. So I took a break. But breaks are weird. Taking a break in a relationship is weird because you probably really should just end things but don't quite want to make that commitment. Taking a break in the middle of a long class is weird because then it's even harder to come back and sit through the rest. And taking a break from blogging has proven to be weird, as well. I found myself attempting to come back a few times, only to replay in my head the conversations I had with friends about my journey lately and realizing that maybe it was all still too much.

But I'm back now.

And I'm back because it is, in fact, all too much. But it's all too much for me. It's all too much to handle alone. And my blog is an outlet. And I'm doing myself a disservice by not letting myself use that outlet. And, who knows, maybe someone else really was getting something out of my blog, too. And who am I to take that away from them just because I'm scared?

So I'm back.

Today my doctor looked at a report that she received from a test I had done, laughed at the results, and then high-fived me and told me I now hold the record for the worst results she's ever seen.

So that about sums me up right now.

Winning at losing.
Hanging on.
Attempting to be positive.
And, above all, being thankful. For my family. For my friends. And for this outlet that I have.

There's always something to be thankful for.