So I had planned for my next blog post to be lighthearted and fun. I wanted to talk about my skincare routine and even throw in a little video with the products but that won’t be happening for a little bit because I broke my nose.. Some of this is going to be TMI and some of it I’m going to try to be lighthearted because I need a good chuckle and I’m sure everyone else could use one too.

The TMI part comes with me talking about my period and the struggle I’ve faced since starting at 10. I remember my mom going into my fifth grade teacher and explaining that I had started my period that summer. The teacher was super understanding and helpful even though I was younger than most girls who start. My period has always been kind of crazy but have just gotten worse over the years. When I was 23 I was diagnosed with stage 4 endometriosis. It makes my period just super painful and super heavy. My doctor stopped them for while. Then the drug is so serious that I had to take what is called a drug holiday. It basically makes you go through menopause when you are on it. But it was worth it and my side effects weren’t bad just a hot flash now and again. So during my last drug holiday my doctor left his practice in October of last year. I was due to come back in for my shot in November. I received a letter saying that any doctor at the practice would be willing to take me. However when I called they said there was no record of me being that doctor’s patient or ever visiting that office. Then my back got worse and I decided to put it on the back burner. My periods are super heavy. Like crazy heavy... you can skip over this part because it’s the TMI but I can bleed through a pad in an hour for the first few days I’m on my period. I can bleed through a tampon and pad together in two hours. It’s insane and leaves me feeling more than drained.

So Sunday afternoon it was my second day on my period and I was feeling just so ran down. Couldn’t walk without getting lightheaded. But I’ve never been one to really pass out or faint before. I didn’t move much and slept until about 11:30am. I got up and put on a new set of feminine products and went to lay back down. It wasn’t until I got up again an hour to change those products that I passed out. I had just taken my seat in the bathroom and then everything starts sounding like muffled like I’m under water. The next thing I know I wake up face first on the bathroom floor. My first thought naturally was “I’ve broken my nose.” My second thought was “I’ve ruin it!” Now this was my second thought because I had a surgery to correct a deviated septum and when I woke up from that I fell in love with my most hated feature. My nose had been super crooked after a few cheering and basketball accidents as a kid. I used to have a lot of headaches but after getting my nose fixed it more then cut them in half. Also I was worried it would be crooked again and I’m shallow. Like any girl out there I want be and feel pretty. If my nose was crooked then I would definitely not be feeling pretty for a while. My brother comes running in and my poor dog, Benny, who had been in the bathroom with me went running out.

Long story short my nose was broken in a straight line so it be returning to leaning to one side. But is has been painful. And I’m going to have a long journey to figure out the reasons behind my passing out in the last couple months. I know this because so far my bloodwork and everything from my lady doctor has comeback normal. She still has some test scheduled for me but she recommended I go back to see my neurologist. I’m used to a long journey and I’m also used to not giving up even if the answer isn’t obvious. I’ve learned, my mom has learned, and my brother has learned how important it is that we all stay strong advocate me and my health. We wrote off and pushed aside for years. But now we don’t allow that. We know there has to be a reason and there has to be answers. Also I’m already feeling better. I want to thank everyone who checked in and prayed for me. It might the world.

Before the fall.

Immediately after Later Sunday Evening Monday Night

Thursday.

When you have an invisible chronic illness nobody can tell. You look perfectly normal when people see you out or when you post pictures on facebook. You look the same way you did before you got diagnosed. People see you doing some of the same things you enjoyed doing before. You even have a job and normal responsibilities. But the truth so much in your life has changed. Everything makes you tired, everything causes you to ache, and you've either gained or lost weight from medicines you need to keep you functioning at a semi-normal level.

I made the decision to be very open about my illnesses. I made this choice because I had never heard of a few of my illnesses until a doctor was standing in front of me telling me that I had them. If you follow me on social media you will already know that I have an autoimmune disease called Sjogren's Syndrome. But what you may not know is that illnesses tend to cluster in one person. Which means if you are diagnosed with one chronic illness the chances you will have others increases.  So I will go ahead and list all of mine for you:

• Sjogren's Syndrome
• Rheumatoid Arthritis  
• Endometriosis
• Chiari Malformation
• Gastroparesis
• Spinal Stenosis 
• Juvenile Degenerative Disc Disease  
• Thyroid Goiter and Tumor

Body Talk



It's 5am on a Monday and I'm up writing this when I should be sleeping. This is all thanks to my good friend prednisone. Sometimes it keeps me up all night and other times it doesn't affect me.  But making me have crazy sleeping habits isn't the only thing that prednisone has changed in my body.

It's time to get real. When we picture somebody who is "sick" we usually think super thin, super pale, looks like a vampire or zombie walking among us. This is just not true. In most cases being sick is invisible to everyone but the person who is going through it. One of the hardest things for me since I became sick has been loving my body. Not only has certain medicines and other medical related things caused me to gain weight like crazy but my body doesn't work right more than half the time and it is almost always hurting somewhere. It's hard for me to recall a day where I wasn't in pain or my pain wasn't so bad that it wasn't nagging me in my head about all the things we have trouble doing now.

I'm very insecure about how round my face has become since taking steroids and the fact that I have a goiter that can be seen from the outside on my neck makes it really hard to look in the mirror and feel pretty. Sometimes I feel like the girl I was before is completely gone and I keep trying to get back to her but you can't go back you can only move forward. I worked hard on having confidence before all of these medical issues and chronic condition cropped up but here I am starting from scratch and feeling like a teenage girl again. Just trying to figure out how to reconcile the two Katies. The Katie who is sick, who wants to be outspoken and advocate not only for herself but for others like her. Then there is the Katie who is still a 24 year old who wants to go out or go over to a friend's for drinks but ends up staying home because her joints or muscles are hurting again so she loses all the self esteemed she'd built up over the course of the week because she did 'productive' things. I have feelings this battle is going to last a while and the two Katies will exist separately in most ways forever.  But that doesn't mean I'm not going to try and change the things I can control like my diet and exercise habits.

At the end of October my wonderful brother started meal prepping for me and the course of the month I've lost ten pounds. His goal for was never weight loss because he thinks I'm perfect. His goal was consistency and making healthy food choices in hopes that it helps lessen my flare ups and the swelling in my joints.

I've not been so good on our meal the past week but in the words of Nick, "I'm going to start slaying the game," again today. It's Monday, I'm awake at 5:30am there is no better time to do a little yoga and have some overnight oats.

Weekend Getaway





It's been forever since I've left the state of Kentucky. Don't get me wrong Kentucky is my favorite place on Earth but I've been in a rut lately of stressing about being sick and finding a new job. So one of my family friends decided we all needed to get out of Kentucky for the weekend. She booked us a couple in Nashville at the Sheraton for the weekend of Eclipse because Nashville was in the totality zone.

Traveling in a car is never ideal. But when you have a chronic illness it can be pure torture. So by the time we made it there I was pretty exhausted. My friend, Laura, and I were sharing a room. Laura is like an older sister to me. I'm always confiding and sharing things with her. She also has a lot of the same joint pain, stomach problems, swelling, and etc. that I do. So it makes her super easy to talk to about medical things. The only difference between us is I'm living in the land of the diagnosed and she is living the hell that belongs to those without a diagnosis. So after the car ride we were both totally wiped out. When we checked into our room we crashed on our beds, missing dinner and instead watching old Angela Lansbury movies on TCM. Not what you would call a crazy night but definitely one of my favorite ways to unwind.

The next morning we woke up and went to breakfast in the hotel dinning area. Then Laura and I took naps before heading out to dinner at the Texas de Brazil steak house. Laura and I decided we felt well enough to go out and experience some Nashville night life. We went to a bar where they put on a burlesque show. It was super crowded because everyone was in town for the eclipse. We had a couple drinks at the burlesque bar then we went to one of the many bars in Nashville that play live music. This bar was a lot less crowded and the band was really great. They covered some of my favorite songs. I had enough drinks in me to tell the lady in front of me who was with her daughters that I didn't think she looked old enough to have daughters that could drink.

Then we went home where Laura and I proceeded to have a three hour heart to heart while simultaneously watching Carry Grant movies on TCM.




The next morning we decide to have breakfast at the place Laura and I slept through dinner on Saturday evening. It was the day of eclipse and I got to tell you I wasn't nearly as excited as I should have been because I didn't know what to expect and I'm definitely not an outside person. Especially now because being in the sun triggers flare ups of my Sjogren's Symptoms. But I knew this was a once in a lifetime kind of deal to see the eclipse in the path of totality. Let me tell you if you weren't in the path then you missed one of the most special things I've ever experienced. For a moment when the moon finally and fully blocked out the sun I got a rush! The day turning dark and the crickets singing in the middle of day is of the most amazing experience. Words can't ever describe and pictures and video will never do it justice.

So after the eclipse was over and we watched the sun come back into view. We headed home. The car ride was tiresome and I've had a flare up from the travel for the past two days but it was worth to see such an amazing event with some of the people I love most in the world. I really do feel privileged to have a woman like Denise, who loves me like her own child, also works to include in these amazing things.

These are some of the many songs I use to help me cope and get through tough days with chronic illnesses.

1.) Liability- Lorde
      "So they pull back, make other plans, I understand, I'm a liability. I'm a little much for everyone."
This is a song I use when I need a good cry. It's been listened to on repeat, especially when I have to cancel plans. Or have to say no. Or don't get invited at all because everyone assumes I will say no anyway. Even though I know my friends would never call me a liability, it doesn't stop me from feeling that way. Even if I'm able to go out, our whole dynamic changes. Everyone is worried if I'm tired or standing too much, which is amazing because they care, but somewhere in my mind I wonder when they will get tired of it.
   
2.) Pompeii- Bastille
      "How am I going to be an optimist about this?"
This song has made me laugh, made me cry and made me scream in anger while questioning how I'm going to move forward into the positive. It's hard to be sick, but it's even harder realizing you have to move forward with the knowledge you aren't going to get better. In fact, it feels like the 'walls keep tumbling down.’ When you have one chronic illness, you are more likely to get others, so you keep experiencing that heartbreak. This song has been a true gift to pick myself up again.

3.) You Don't Know About Me- Ella Vos
    "This is my body. This is my war."
This song was written as an ode to women's rights, but I think it works well as a chronic illness fight song. A lot of people have opinions on what is best for you, about what you should or should not be doing. Sometimes you just want to push them all away, even if they are trying to help, because nobody really understands how hard you are trying.

4.) Lights and Buzz - Jack's Mannequin
   "Streets look the same but nothing's as it was."
This song is amazing after you've had a long day at the doctor's office or a trip to the Emergency Room. It was written after the lead singer was finished with his cancer treatment, so it's written by someone who knows what it's like when your body turns against you, but things have to keep moving forward. This song fills up that empty feeling I get when I walk away from an appointment and have to wait for more bad news. It makes me remember I'm alive and no matter what, I can be part of the happiness even if life isn't turning out as I imagined.

5.) Don't Let Me Down- Joy Williams
    "Crashing, hit a wall. Right now I need a miracle."
This is a cover of the original by The Chainsmokers and Daya. This is just a pure, stripped down version of a song with lyrics that are good to wallow in. As a chronic illness warrior you can't be expected not to wallow sometimes and this song is a desperate plea.

6.) White Flag - Sabrina Carpenter
     "Palms out, want to beg for luck but I'm way too proud never giving up."
Honestly, it was extremely difficult to pick one lyric to quote for me. With other lyrics like "never win if you never lose," and "I'm up late on the telephone and I'm all alone with the dial tone." This song has been one of my favorite 'sick anthems.' I use it to remind me it is okay to let yourself sink into the melancholy of it all. The chorus in fact chants to let yourself feel all the sadness and harshness, but not to let it take over your life, which can be hard to do when you're in chronic pain. "I'll throw the white flag of surrender. Knock me down but not forever. Just for now."

7.) Her Diamonds- Rob Thomas
    "She says, "what the hell I just can't win for losing." Then she lays back down."
This is one of those cliche songs that almost everyone has on their chronically ill playlist. But it's for a very good reason. Rob Thomas wrote this song talking about his wife's autoimmune disease. It perfectly captures both sides of the story. He focuses on her feelings and her pain, and how those things make him feel helpless. I know for myself I have a great support system and I know my family, especially my mom, has probably looked on me with the same eyes as Rob looks at his wife on her really bad days. This song just really gets the struggle we all go through. It feels like it was written about me and it's nice to feel understood.

8.) Good Morning- Bleachers
     "One foot out and I know the weight is coming because I left by the bed last night."
This song is a little bit of humor and true feelings. Morning can be a very hard time for most people with a chronic illness. This song to me is about being between two worlds, one sick and one healthy. I like how the sad and lost lyrics are paired with such upbeat music. I just feel like it holds a sense of irony that is similar to the irony that can be found with having an invisible illness. I also want to throw this lyric in, "Everybody moving around like nothing had changed but something had changed in me." After getting your diagnosis it's sort of surreal because you are relieved to have answers, but now that you know it's not going away, you have to start adapting and let go of the before when you were 'healthy.' This song is good for those early stages of 'what is my life now?'

9.) Just Hold On - Steve Aoki and Louis Tomlinson
     "What do you want them to say when you're gone? That you gave up or you kept going on."
This song is a bit cliche, but it’s inspiring because it honestly helps to listen to those sometimes. The human experience can be super cliche and this song poses some good questions to think about. It's one of those songs that inspires you to find your inner strength with questions. "What do you do when a chapter ends? Do you close the book and never read it again?" Letting go of a pain-free life filled with hope now feels like turning to an old chapter in a book. As much as you want to, you can't go back because the story arc moves you forward. I listen to this song when I lose perspective.

10.) Bring On The Rain - Jo Dee Messina ft. Tim McGraw
      "It's almost like the hard times circle round."
This song has really seen me through a lot. Through my earliest diagnosis of degenerative disc disease and having a stomach issue it took my whole life for someone to identify, to getting the news about my autoimmune disease. Just when I start getting used to one diagnosis, another thing pops up and is a whole different issue. But like in this song, getting a new diagnosis is just a lost battle, it's not the war. It might get me down, but I will find a way to pick myself up and fight on.

I hope you can use some of these in your playlist and please share with me some of your favorites.

https://open.spotify.com/user/1247921928/playlist/6UxNijhTCtdURDi4AQAfjv?si=gZNzUzj2
My Chronic Illness Playlist