Let's talk about week two of treatment, shall we?
Week two sucks.
In week one you're still cautiously optimistic because it's new. In week one you're still thinking that maybe this treatment is the one that's going to work. Week one is when you don't know yet how it's going to make you feel. Week one is when you are just normal Lyme tired, not treatment tired. Week one is when you're still half human.
Week two is when it gets ya.
Week two is when the extras kick in. The extra exhaustion. The extra nausea. The extra feeling that your internal organs are actually on fire. The extra swelling. The extra feeling like your joints have rubber bands around them. The extra weird food cravings. And the extra weird food aversions. The extra hard time finding your thoughts. The extra tooth pain and the mouth tingling that you know is the beginning of mouth sores.
And here is where I would normally say that it also kicks up the extra hope and the extra motivation and the extra positive things. But if I'm being real right now, I don't think I have it in me.
Because I'm extra worn out. And I'm extra depleted.
And I'm extra thankful for my bed.
Wednesday, March 22, 2017
Saturday, February 18, 2017
I have a body.
I don't have a perfect body.
I have a body that has been hurt. By myself. By others. And by processes and procedures in an attempt to make me better.
I have a body that's scarred. When I look in the mirror that's what I see. When I look at other people--in the store, when I meet them for the first time, whatever it may be--that's where their eyes are, too. Not meeting my eyes. Looking at my scars. "What are those?" "They're just scars. I had surgery there." "...oh."
I have a body that continually malfunctions. One way or another. One part or another. One organ or another. Without warning. Like it doesn't remember what it's supposed to be doing. Like it doesn't remember which way is up. Like it doesn't remember how to be a body anymore.
I have a body that I can't trust. A body that doesn't let me make plans for the future let alone get through one day without throwing me off my path.
I have a body that is scared. Scared that it isn't good enough. Scared that it isn't strong enough. Scared that it can't handle what's next.
I have a body that doesn't feel like I belong in it. With skin that feels too tight some days and too loose others. Like I'm going to pop out of it one minute and then like there's water under it and I'm floating ten minutes later. A body that doesn't even look like mine when I look in the mirror. A body that doesn't feel like mine either. Like I'm always either two steps ahead or behind it.
I have a body that has been taken apart and pieced back together. Things have been added to try and help me. Things have been taken away to try and help me, too. I've been a pin cushion. A puzzle.
I don't have a perfect body.
I just have a body.
I have a body that's hanging in there. A body that is trying. A body that never could have imagined being this body. A body that gets lost in a world that isn't what it imagined for itself.
A body that is fighting anyway.
I have a body that has been hurt. By myself. By others. And by processes and procedures in an attempt to make me better.
I have a body that's scarred. When I look in the mirror that's what I see. When I look at other people--in the store, when I meet them for the first time, whatever it may be--that's where their eyes are, too. Not meeting my eyes. Looking at my scars. "What are those?" "They're just scars. I had surgery there." "...oh."
I have a body that continually malfunctions. One way or another. One part or another. One organ or another. Without warning. Like it doesn't remember what it's supposed to be doing. Like it doesn't remember which way is up. Like it doesn't remember how to be a body anymore.
I have a body that I can't trust. A body that doesn't let me make plans for the future let alone get through one day without throwing me off my path.
I have a body that is scared. Scared that it isn't good enough. Scared that it isn't strong enough. Scared that it can't handle what's next.
I have a body that doesn't feel like I belong in it. With skin that feels too tight some days and too loose others. Like I'm going to pop out of it one minute and then like there's water under it and I'm floating ten minutes later. A body that doesn't even look like mine when I look in the mirror. A body that doesn't feel like mine either. Like I'm always either two steps ahead or behind it.
I have a body that has been taken apart and pieced back together. Things have been added to try and help me. Things have been taken away to try and help me, too. I've been a pin cushion. A puzzle.
I don't have a perfect body.
I just have a body.
I have a body that's hanging in there. A body that is trying. A body that never could have imagined being this body. A body that gets lost in a world that isn't what it imagined for itself.
A body that is fighting anyway.
Saturday, February 4, 2017
Dating.
You know what's difficult? Dating.
You know what's even more difficult? Dating as an adult.
You know what's even more difficult than that? Dating as an adult with a chronic illness.
Let's talk about why, shall we?
1. If you're not able to work, how are you going to meet people?
2. If you go the online dating route there's that awkward factor of having to tell people in your life that you're online dating. There really should be no shame in your game, but there's definitely a stigma surrounding it in some people's minds that you have to get around.
3. What do you write as your occupation when you do decide to go the online dating route? "Professional sick girl. Really good at it. Winning."
4. All of your profile pictures are with your dog because you don't go out and do anything.
5. You have to decide when you're going to bring up your health situation in conversation. Do you approach it close to the beginning to get it out of the way/see if they're going to run? Or do you ease it into conversation later once you've already won them over?
6. The fact that you even have to think about whether or not your health situation is going to make them run SUCKS.
7. If you don't directly approach it you get comments like "you seem to have a lot of health problems" (I got this one the other day). And then you have to explain. (Or, you go into defense mode and explain how you also have a lot of other good qualities and how your health is really just a small part of you before realizing that he didn't know that was a touchy subject and he didn't deserve your freakout. Oops.)
8. When they ask you why your last relationship ended, you have to make up a reason because "my health was too much for him" isn't painting yourself in a way that makes you seem dateable.
9. Your anxiety makes everything bigger than it is.
10. Sometimes you think it might just be easier to just stay alone forever because you already know yourself and your weird health quirks.
So there. See? It's super difficult. Exciting sometimes. But difficult, nonetheless.
So for now I'm going to put on my pajamas, my fuzzy socks, and cuddle with my puppy because he already knows me and my health quirks too. And loves me for them. And he likes napping even more than I do.
And that's really saying something.
You know what's even more difficult? Dating as an adult.
You know what's even more difficult than that? Dating as an adult with a chronic illness.
Let's talk about why, shall we?
1. If you're not able to work, how are you going to meet people?
2. If you go the online dating route there's that awkward factor of having to tell people in your life that you're online dating. There really should be no shame in your game, but there's definitely a stigma surrounding it in some people's minds that you have to get around.
3. What do you write as your occupation when you do decide to go the online dating route? "Professional sick girl. Really good at it. Winning."
4. All of your profile pictures are with your dog because you don't go out and do anything.
5. You have to decide when you're going to bring up your health situation in conversation. Do you approach it close to the beginning to get it out of the way/see if they're going to run? Or do you ease it into conversation later once you've already won them over?
6. The fact that you even have to think about whether or not your health situation is going to make them run SUCKS.
7. If you don't directly approach it you get comments like "you seem to have a lot of health problems" (I got this one the other day). And then you have to explain. (Or, you go into defense mode and explain how you also have a lot of other good qualities and how your health is really just a small part of you before realizing that he didn't know that was a touchy subject and he didn't deserve your freakout. Oops.)
8. When they ask you why your last relationship ended, you have to make up a reason because "my health was too much for him" isn't painting yourself in a way that makes you seem dateable.
9. Your anxiety makes everything bigger than it is.
10. Sometimes you think it might just be easier to just stay alone forever because you already know yourself and your weird health quirks.
So there. See? It's super difficult. Exciting sometimes. But difficult, nonetheless.
So for now I'm going to put on my pajamas, my fuzzy socks, and cuddle with my puppy because he already knows me and my health quirks too. And loves me for them. And he likes napping even more than I do.
And that's really saying something.
Friday, January 27, 2017
Take 547.
Let's be honest for a second. I have a really hard time coming back to blogging after I take a break. During the months when I blog every day I'm much better at it. I get in a groove, it's just a thing that happens, and I do it. But when I take a break, starting to write again is always such a struggle. Not necessarily because I don't have anything to write about. And not because I don't want to do it. It's more like I forget how. How do I blog? How do I write? How do I human?
So, for the last few night's I've been attempting to do this. I've started writing and then I've ended up deleting it. But, I think maybe this time I've got it. If you're reading this I've either conquered it or just decided to go big and post a fail. Knowing me it really could go either way. But, whatever it is that you're reading--hi! Welcome back. Or welcome, if you're new here. I'm Leigh. I'm not normally this scattered. Or maybe I am. I'm not really sure if that was a lie or not.
I have a few blog post ideas in my head right now so hopefully I can get my groove back. Thanks so much for hanging in there with me. This life is messy and crazy and hard. But it's nice to know that when I can get my words together, someone is there on the other end of the computer to read them.
So, let's do this again. Take 547.
So, for the last few night's I've been attempting to do this. I've started writing and then I've ended up deleting it. But, I think maybe this time I've got it. If you're reading this I've either conquered it or just decided to go big and post a fail. Knowing me it really could go either way. But, whatever it is that you're reading--hi! Welcome back. Or welcome, if you're new here. I'm Leigh. I'm not normally this scattered. Or maybe I am. I'm not really sure if that was a lie or not.
I have a few blog post ideas in my head right now so hopefully I can get my groove back. Thanks so much for hanging in there with me. This life is messy and crazy and hard. But it's nice to know that when I can get my words together, someone is there on the other end of the computer to read them.
So, let's do this again. Take 547.
Thursday, December 29, 2016
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.
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.
Sunday, December 25, 2016
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.
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.
Monday, December 5, 2016
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.
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.
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