stronger-than-crohns

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Wow, it's been a while!

It's been so long since I've posted! I'm so sorry! I have been so busy with school and work I've barely had time to eat and sleep! Seriously though, I've been super stressed because of how busy I've been. I'm off of school this week for spring break but the whole week I've been doing school work or working, so I haven't had any time to relax. So here's an update on myself... The Entyvio seems to be working great, all my numbers on my blood work are normal except I have noticed two things... A few months ago my inflammation rate was at a 6. Now it is at 30... Both those numbers are considered normal but I'm wondering why it is going up? I really hope I'm not getting more inflammation instead of it going away. I hope this medicine doesn't stop working because it is honestly the first medicine to work for more than a few months for me.. Second, this is the third time I have noticed I've gotten sick two weeks before my infusion. Entyvio isn't technically an immunosuppressant since it only targets the intestines, and I usually don't get sick at all ( not even when I was on immunosuppressants!!!) so it's weird for me to be sick three times since 2016 started. It's weird because the past three times it's been two weeks before I'm due for my infusion and each time it gets worse... At the end of January I got a bad cold two weeks before my infusion and it lasted until around the time I got my infusion. In February I lost my voice and got a bad cold two weeks before and the week of my infusion. This month, I lost my voice about a week ago. Now my voice is back but I have a bad head cold, a really upset stomach, and I'm nauseous. The weird thing is the only time I get nauseous is when I have a migraine, that's it! So it's definitely weird for me to get nauseous, something must be going on... Due to my busy schedule I have absolutely no time in April to go see my doctor. I can't take off of school to go see her which really sucks... I'm deff gonna email her and let her know how I feel. My crohn's pain has been fine and everything is normal except for two weeks before my infusion. I hope the medicine isn't wearing off bc then that would mean I have to push up the infusions to every 4 weeks which I DO NOT want to do. I know I've had a busy schedule and haven't been eating healthy but I know that's definitely not the reason I'm feeling this way. So frustrating! Anyway, hope everyone is doing well! For those who celebrate Easter, I hope you have a great holiday and eat tons of yummy treats (Peeps are my fav!) Xoxo

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Thanks for your help and your support!!! Xoxo

For my speech communication class our homework is to pick a song that relates to our lives. I wanted to choose a song about strength. I’ve thought of Warrior by Demi Lovato, Brave by Sara Bareilles, Stronger by Kelly Clarkson, and others but I can’t pick one that I like. Can someone recommend other songs?! I feel like all songs are about love or heartbreak and stuff I want one about strength or something about overcoming a problem, you know, so I can relate it to fighting Crohn’s everyday.

Thanks in advance! Xoxo

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You might have a chronic illness if :

If takes you over an hour to decide if you are going out.

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Home infusion

For those of you asking about my home infusion, I am on entyvio and the nursing company that I use does Remicade as well! Every company is different especially every PHARMACY. I used CVS Caremark (which is who also sent me my Humira and Stelara shots) and my insurance approves them. Some insurance companies do not approve home infusions (which is pretty dumb bc it is cheaper to have it at home than it is at the hospital) and some home nursing companies will not use certain medicines. I highly recommend asking about it though! Remember every doctor and insurance company is different, but it doesn't hurt to ask!

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stop scrolling. now.

stop whatever you’re doing

just stop

breathe

you’ll be ok

if you see this, somebody cares

times are tough, but somebody cares.

you should NEVER feel like you deserve to die, and you don’t

don’t do it. not tonight, not tomorrow, not ever

don’t do it because somebody cares

don’t do it because there is so much more to you than sadness

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Sometimes you forget how much your body relies on medicine and how much it is helping until you are running out and starting to feel the negative effects.....

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21!

reblog with the age you turn in 2016

i turn 18😳

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I feel like it's been so long since I've posted!!! I've been sooo busy with school! It's finals week so I've been super stressed with studying but I figured I would take a break and go on tumblr! Anyway... I will be receiving my Entyvio infusions at home instead of having to drive an hour and a half to the hospital to get them!! My calprotectin has been at around 150 for quite a few months (I know many people have much higher levels but this is high for me because usually my blood work doesn't show anything but the colonoscopy does) and it is down to 43!! I have been feeling pretty good especially considering all the stress I'm under with school. I saw a dentist who specializes in oral crohn's about the ulcers inside and outside my mouth, along with my lip swelling. She said it is definitely from Crohn's (out of the million doctors I've seen only her and my current GI agree that's what it is) and all she can do is give me some creams to help. Unfortunately it's from my crohn's so I kind of have to let it happen and I can't do anything to stop or prevent it, but the creams can help take away the pain and some of the redness. I wish there was something more I could do because when they do act up, they get ugly and embarrassing but we are hoping that if the medicine continues to work then it will keep my lips from acting up! That's it for now... I think! Hope everyone is feeling well! Happy Holidays to my lovely followers xoxo

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I want all the spoonies on here connected.

Reblog, follow or like to show how big the community is and to show you’re there for all. 

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The Crohn’s and Colitis Foundation is in the running to receive $75,000!

All of my IBDers need to go and vote! 

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Please don't do this. I promise things will start to get better I promise this pain is only temporary. Please stay here. Please

I'm sorry

My fight is ending tonight. I’m tired of being a financial drain on my family and putting strain on everyone. I can’t seem to find the drive or motivation to get what I need done and to achieve what I’ve set out to do.

I feel too exhausted to be the happy and positive person all the the time when I don’t feel that way on the inside

When I picture my future, I see nothing. It’s so dark and bleak and it still feels like nothing but failure will keep happening.

This seems like the only plausible option I have. I’m scared and nervous, but I’m sure of my decision.

My only regrets are that I didn’t get to fully live my life in my new found identity. That I never made it to big bear. And that I couldn’t live up to everyone’s expectations of me.

I’ve put on August Rush because I want to listen to something beautiful.

I’m sorry.

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Should I start a YouTube channel?

Hi guys!!! I have a feeling I already asked this question so I apologize if I have but please give me your feedback!!! Should I make a YouTube channel?? I would make videos talking about the different medicines I've been on, side effects I felt, tips to help (such as tips to help Humira injections hurt less) and even take videos during infusions! I remember when I was first diagnosed I found Sara Ringer on YouTube and her videos helped me a lot, especially when I was about to start Remicade and I was scared! I want to help others so I thought a video would! And then people can give me suggestions of different videos like they can have me answer their questions, talk about receiving accommodations in school, etc!!! I've always wanted to do this I just never knew if it was a good idea or not! I want people to actually watch my videos bc I would put a lot of time into it! Let me know what you think!!! Thank you in advance for your feedback! Xoxo

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Spoonies

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Heating pad!!! It helps me a lot! Also a cool cloth on your head helps to just calm me down and relax me.. I also agree with the tips above! I hope you feel better and are able to get comfortable and fall asleep!❤️

Any tips for falling asleep while in pain, without medication? I take a lot of different meds already and my body can't handle more medication

Meditation or white noise are great non-medicinal sleeping tools. Try a warm bath or shower (if it isn’t stressful on your body) before bed. Essential oils can help as well, if you’re not sensitive to smells – lavender, chamomile, vanilla, sandlewood, etc.

Anyone else have suggestions?

*love & spoons* 💙

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20th birthday!

Turned 20 today! Well I will be officially 20 at 10:55 pm, so about 10 minutes from now! I had a great time with my family and boyfriend, but my night ended with me becoming very stressed and overwhelmed with school and the fact that I still don't feel well... But overall I had a great day!

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Um I'm not really sure. My doctor thinks he might start weening me off soon. I don't think i noticed a difference being on it though.

I've only been on it for a week but I don't see any results! It's annoying bc I think it takes a few weeks to kick in and I'm in the middle of a flare, I wish my doctor gave me something stronger like prednisone. But luckily my flare is going away because it's already been like 2 weeks so it should be gone soon