Wednesday, November 19, 2014

"I'd like to be my old self again, but I'm still trying to find it."

"I'd like to be my old self again, but I'm still trying to find it."
These words resonate in my head over and over almost every day. The past few months, I have been consumed with wishing or trying to be my "old self." Ya know, 45 pounds lighter and healthy. But I realized something over the last couple days, I'm not meant to be my old self again. God didn't put me on this path so that I could go right back to where I started. He is trying to grow me and mold me for the future. Not for how things used to be.

Let me explain.

I am constantly saying phrases that begin with "I used to..."
"I used to love shopping, now I just keep going up a size."
"I used to not have to give myself shots."
"I used to be able to walk around Target without hurting."
"I used to be able to sit crisscross applesauce with my pre-k class, now my joints just won't let me."
"I used to only visit the doctor for a cold, but now I've become best friends with my medical team."
"I used to not have a 'medical team' (however, I do love them)."
But you get the point. I've been stuck in this "remember when" stage and wanting to just go back in time. Now granted, I have learned to always appreciate where you are in life. Our society is so consumed with weight and looks that we are always trying to be skinnier. In my case, gaining a lot of weight in a short amount of time, was devastating. I was so silly to think I needed to be skinnier then. I had no idea what I had when I had it. Things change. Sometimes really quickly and I am trying to practice that same concept with where I am now. Who knows where I will be next year or even next month. I need to choose joy, now. Not later.

"Behold, I make all things new."

New. That is a hard thing for me to swallow. All of this is new. I've been through the whole range of emotions and I am finally settling into my "new." God is making me new. He has a plan for me. And let's be honest, this whole sickness plan wasn't a slide in my life powerpoint. But He doesn't want me to go back to being my old self. He wants to make me new. During the sermon tonight, our preacher said "God didn't create us to be happy, He created us to glorify Him. No matter what our circumstances may be." Why would I try to "be my old self again" when The Lord is pointing me in a completely new direction.

As much as I love Taylor Swift, I want this song to resonate in my head.

Come, Thou Fount of every blessing,
Tune my heart to sing Thy grace;
Streams of mercy, never ceasing,
Call for songs of loudest praise.
Teach me some melodious sonnet,
Sung by flaming tongues above.
Praise the mount! I’m fixed upon it,
Mount of Thy redeeming love.
 
Prone to wander, Lord, I feel it,
Prone to leave the God I love;
Here’s my heart, O take and seal it,
Seal it for Thy courts above.

I am so prone to wander. Don't get me wrong, it is totally acceptable to have bad days. I just want to embrace my new. We aren't meant to be our old selves. He wants to make us new.

Love,
The Not So Joyful Joy...
But I really am trying

Thursday, September 18, 2014

"But you don't look sick..." and other things not to say to chronically ill people


Disclaimer: I know that people mean well. I do. The purpose of this blog is to take variations of the things people have said and laugh about it.

People have said some really interesting things since I revealed my illness. Some people have been extremely helpful and nothing but sincere. Others, have said some things that will go down in the books. So to the person who keeps asking non-pregnant people when they're due, please heed my advice. You can thank me later.
  1. "But you don't look sick."  Um... thank you? I guess? This comment usually follows "how are you feeling?" or something of that nature. When I mention that I feel like poop, and they look at me with the puzzled look...like they don't believe me? Hmm. I wasn't aware you could see my intestines.
  2. "Oh my gosh.... my best friend's neighbor's grandma's dog has Crohn's!" Like all of the sudden we are supposed to brush each other's hair and talk about the similarities between myself and your best friend's neighbor's grandma's dog. Unless it is someone you are really close to, let's stick to small talk. I would much rather talk about real estate than talk about Crohn's like it's some kind of door prize.
  3. "I heard about this book that cures Crohn's if you eat ___, ___, and ___" First of all, there is not a cure for Crohn's... yet. I wish I could tell you that the only thing I've kept down in the last four days is Sprite and about 8 sticks of saltines.
  4. "If you could just exercise a little bit more then I bet you'd feel much better!"
  5. Anything about weight. Please see my previous post about the joys of Prednisone.
  6. "Why are you so tired?" I wish I knew the answer to that question. Anyone struggling with anything autoimmune is carrying around a different breed of "tired." It's the kind of tired that a nap doesn't fix and keeps you up at night. Especially because autoimmune can affect literally any part of your body. It gets very exhausting. It takes the peace away from you. You suddenly can't take a little ache or pain lightly. You become best friends with your doctors and bowel movements pass as good conversation.
  7. "At least its not _____." There was a time during my medical journey that my doctor told me I either had Crohn's or Lymphoma. I obviously didn't want either of them, but when I got the biopsies back confirming Crohn's as opposed to cancer, I found everyone was saying "Well, at least its not cancer!" I did not want cancer, by any means, but I didn't exactly think Crohn's was a win. Yes, everything could be worse. But you wouldn't go up to someone who's mom died and say "well at least both your parents didn't die!" 
  8. "It will all get better." I really struggle with this one because it always comes from the most sincere. (My Mom) And in my heart, I know it will get better. But sometimes, I don't want to think about what WILL happen, I want to think about right now. And in a pity party, whiny, kind of way, I need to think about the pain and yuckiness going on, so I can get to the BETTER. Because trust me, I want things to be better.
 
By now you may be wondering what to say to someone that is sick. Well, the greatest thing you can do, is to listen. We may need to vent or we may need to change the subject. 

BUT Always point us back to Jesus. Recently, my best friend Dawn and I ran into McDonalds to use the restroom. While we were waiting, a lady overheard us talk about Dawn being pregnant. She said her congrats and immediately closed her eyes and started to pray. It was short, but she prayed for "a healthy mama and a healthy baby, protections, and thanked Him." We were so grateful. She proceeded to tell Dawn how great she looked. It was so sweet. When people are struggling, they need to be pointed back to Jesus. Even if it's as simple as "We're praying for you." In our hearts, we know God is in control, but sometimes those reminders come at the best time. 


Honestly, I don't even know what to say half the time. I have good days and bad days... strong days and weak days.  That's when I just have to cling to #8 and remember that things will get better. Eventually.
 
Love,
The Not So Joyful Joy
 
But I'm trying

PS. I think all businesses should HAVE to have a public restroom. And we shouldn't have to buy a pack of Juicy Fruit to use it. That is all. 

 

Friday, September 12, 2014

Oh Prednisone, how I loathe thee



Dear Prednisone,

I wish I could say "it's been fun," well, actually no I don't. Truth is, I had no idea what I was getting into when my lovely doctor so nonchalantly started listing out my treatment plan for my "rapidly progressing severe Crohn's." It was like he tried to throw "six weeks of steroids" in the middle so I wouldn't notice. My eye brows raised as I made him clarify exactly what he meant. Little did I know that said six weeks would turn into 14 weeks and we would become lifelong friends. I have a few questions for you though. Why do you have to taste soooo bad? As if your lovely side effects weren't enough, why do I have to gag every night. However, I would gag every night for the rest of my life if I didn't have to take you ever again. Along with the nice 40 pounds you have so graciously given me, I now have enough stretch marks to cause a large earthquake in southern California, enough acne for three eighth grade boys. My hair is thin, my neck is thick, and my face is officially a full moon. But I digress. I wish I hadn't taken for granted my size 4 jeans and the days I was swallowed in a medium t-shirt. I wish I could say that this experience has made me stronger, but I'm not quite there yet. It's quite the opposite actually. I've been reminded that I am weak and that I need a Healer. I've been forced to slow down and focus. It has not been fun nor easy and for that you, prednisone, are partly to blame. I used to make fat jokes about the time my older brother had to go on prednisone, but now I get through my days making those jokes about myself. You've literally sucked the energy right out of me. I thought that two weeks ago when I finally took the last half of my extremely low dose taper, I could cap that pill case for a long time. But I spoke too soon. Just yesterday, my doctor decided to put me on a long term low dose. I still can't really wrap my head around long term because quite frankly, I'm still not over the last time you ruined my life, but hey.. I'm always up for an adventure. I missed you terribly. Note the sarcasm.

Love,
I mean hate,
The Not So Joyful Joy....
But I'm trying