Ouch! They just took blood from my forearm. It doesn’t matter how much fluid I drink before I come to get my infusion, they can’t find my veins & I get blood drawn from random locations. I guess the most important part is that they are able to find blood still & that my numbers are still good. ??
Facebook memories bring out my thankfulness! Thankful I’m on infusion #14 & it is continuing to work. Thankful that I don’t look like this anymore.
This picture was 5 years ago & a lot of pounds & muscle ago, 56lbs to be exact.
I think I look a little better today! Don’t mind that growl on baby mans face, he really is a lover!
I am thankful that I have learned an insane amount about how to live comfortably with ulcerative colitis. It wasn’t smooth sailing at first. It took a lot of diet trial & error. I searched Google often praying that I would find the miracle foods that would help me magically heal & take the pain away. That research led me to some interesting realizations and helped me learn to sparkle in the dark. It’s like “fake it til you make it” dipped in sparkles!
5 secrets to sparkle in the dark:
I am about to be honest with you, completely, brutally, raw honest about trying to sparkle in the dark. It’s not always easy or convenient but it is possible. It is possible through all life’s ups & downs & knuckle balls & strike outs to hit a grand slam despite your burdens. The hubs will be proud of this baseball reference ?
You are strong even in your illness! You can do it, no matter how bad your gut, I mean life, may seem. Also remember, YOU ARE NOT ALONE! Sometimes you just need to know that & to see hope through listening to others stories & advice. If you are completely healthy, you are awesome! I hope you can take away a nugget from this gold mine. If you are sick & hurting, I’ve been there too & I wish someone could have gotten it through my thick skull that the dark has to come before the light.
So my mind is full of thoughts about my journey & how I have changed & stretched & been pulled out of my comfort zone. Sometimes you just need to stretch to be the light you are meant to be. You have a story so share it.
Here’s my tips to shine.
1. Have a sense of humor about your new normal- My husband will tell you that I’m not a haha, funny type person all the time. In fact, I have a tendency to see the problems before I see the positives. I think that comes with some types of personalities. I like to think that I’m just trying to stop problems from arising but sometimes I struggle to see the positive first.
Humor about your disease is definitely a necessity. You have to talk about your problems or struggles with autoimmune diseases because they can be downright confusing & heavy. It’s nice to be able to talk to others who have been there too! If you have multiple autoimmune diseases like I do, ulcerative colitis & juvenile rheumatoid arthritis, you need to add humor to your tool belt of coping skills. I have included some of my favorite bathroom humor for your enjoyment.
2. Do something completely liberating. I know I am a wild one, I just look wild, don’t I?! I am the middle child in my family & by far was the wildest child when it came to rebelling. This may come as a surprise but I like to control, well, everything. If you read 5 Years & Counting (I wish not), you know that I try to feel in control all the time but God typically has other plans for me. When I feel a complete loss of control, I try to do something liberating.
My secret ?, I cut my own hair! This may not be your idea of liberating so search to find what you need to feel your center of control. This is not to be confused with “me time” because that’s of utmost importance too! This is something that lets you regain a little of the control you feel you lose because of external factors.
As far as cutting your hair goes, I’m not saying take a whole inch off or anything, unless you really need to but a small trim here & there gives you a little extra pep in your step & knowing you did it yourself gives you a little extra sparkle!
3. Don’t stress my pet! Back to that control freak part of me. If you can’t control it, don’t let it control you. Both my UC & JRA are strongly affected by stress. I used to stress about everything & when I stepped back to look at why I was continuing to struggle with pulling out of disease flairs, I realized I stress too much!
I sometimes envy my husband. He is not a stressor & when he does show stress, he speaks it & it’s gone. I hold onto stress like my favorite blankie & for far too long it controlled my health. As they say on Frozen, “let it go, let it go!”
There is nothing good that comes from stress. If you are already sick, you will get sicker. If you can slowly (or quickly) drop that stress off at God’s feet everyday, you will be healthier. My main stress was money, I mean, what adults’ isn’t. This adulting thing is definitely a work in progress. So I mentally had to work on not stressing. For awhile, my not stressing looked a lot like not giving a crap about our money. My honey would ask how we were doing financially & I would not have anything to tell him because I stopped looking at our bank account. The stressing wasn’t because I thought we didn’t have anything, I just thought I needed to stress over it to make sure it went where it was supposed to. Boy was I wrong, that money goes where it needs to without my hovering daily! So I have learned to pay bills & be done. I rarely check our accounts & I feel much less stressed. If your stress is money, hopefully I helped, but whatever your stress, let it go!
4. Be healthy! I know, I’m a hoot! If it was as easy as me telling you to be healthy, our world would be a totally different place. By “be healthy” I mean, we are already an unhealthy group of people. Our bodies like to fight against themselves so why not try fighting back. I believe with all my currently healed, happy gut that health can be boosted to fight against autoimmune diseases if you will get your vitamins & nutrients from natural food sources. I will talk much more about vitamin rich food sources in my Healthy Hair Series.
I saw the idea of vitamin healing work when I was trying to have baby #2 in 2012. I saw an infomercial for the NutriBullet system & decide to make the investment to buy the cool looking blender. It’s not a blender, BTW, it’s a nutrient extractor. Learned that real fast!
It was a leap of faith that I’m so happy I made. As I began to drink my vitamins through the daily nutriblasts, I noticed a change in energy, lessening bathroom trips, my hair & nails were growing, & I just all around felt better. I won’t mention the funny orange color of skin I noticed from putting the extra orange veggies & fruits in there at first but I’ve evened out to my special shade of copy paper white again so no foul. It took awhile for my body to get to where it had balanced my vitamins back out, approximately a year to be exact, but when I did, baby #2 was on his way. Because nutrition is within your body & we don’t always want to listen to what our bodies are trying to tell us, you have to make it a point to listen. Give it the nutrition it needs & it will act more appropriately.
5. Enjoy life! It was hard to come back to this place in my journey. I was aways nervous that a peak (remission) would always have a valley (epic remission fail) to follow. That’s not always the case.
If you think about life, you will always have those valleys but, good gosh, sometimes those valleys aren’t disease filled & sometimes those peaks don’t have to be during a remission. When I stopped wallowing in self pity, I decided to find my sparkle again. Life never goes as fully planned so enjoy the game changers & forks in your road. The biggest part of my life that was affected by this was my family. I was leery taking trips or sometimes even going grocery shopping because I did not want to be in public & have a toilet emergency. I stopped doing those daily things that put us in front of people to, ya know, socialize & stuff. My disease was controlling me & dulling my sparkle! I feel like I had to fake it til I made it just to get back to my normal.
My kids at school were making me a gift one day & asked my favorite color. I told them sparkles, pink sparkles if I got to choose. Even on the days that I don’t feel my pink sparkly self, I tell myself, God enjoys watching his people sparkle so go light up the world!