crohnsgirlinpain - Tumblr blog

[crohnsgirlinpain]

Taking meds can suck

I’ve been on up to 35 medications at once, and am now taking some 8 times a day. Here’s some tips and tricks I’ve built throughout the years:

Scheduling/remembering:

Make a schedule. Write down what you’re taking, when you have to take it, everything.

Set alarms.

If you have the time, separate them into piles for each session.

Make a checklist with all of the times you have to take it, and when you hit certain points, treat yourself to a set thing.

Find someone to hold you accountable. Someone who also has a ton of meds is ideal, but it doesn’t have to be.

If you must, prioritize them based on importance. 

When taking unpleasant meds:

If your meds are gross: take it with a spoonful of honey. 

If it’s a tablet crush it up and put it in a capsule instead (be sure to read the label, some need to stay as a tablet and aren’t meant to be crushed)

If you feel like it’s stuck in your throat (but isn’t actually), take a couple bites of food.

Make a cup of tea, I like herbal or ginger. Sip it between pills, but don’t try to swallow them with hot liquid.

Sometimes tinctures are worth mixing in drinks, sometimes it’s better to just take them straight and shorten the suffering time. 

If you can’t get them down, sometimes carbonated drinks can make it easier.

It’s okay to take breaks, I like to take a few gross ones then rock out to a song while sipping tea!

Motivation techniques:

Make it fun. Put some headphones in and dance and have a time while taking them. This was key for me when I had to do IM injections.

I like watching movie trailers, it’s distracting and rewarding and I only do it when I’m taking meds.

Put them in a cute bowl. Also get a cute waterbottle so you’re excited to us it!

Don’t let yourself do stuff until you take them. You may not want to take them, but you also aren’t gonna have anything fun to do until you do.

Get yourself a fancy drink (or bottle soda) that you only can have when you’re taking the meds.

Realize that it might not become easier/a habit. I’ve been taking a ton of meds for years and it still is hard. (And I forget all the time who am I kidding)

Other tips:

Keep a journal with a list of meds, current doses, and any interactions they may have.

Carry a list of medications with you in your wallet. 

It can be helpful to track the first week to a month of taking new meds and note changes in symptoms.

If you need someone to be proud of you, you can always send me a message/ask!

[crohnsgirlinpain]

Haha every time

Fun colitis thing #85

Being in the loo so long the sensor lights turn off….. 👻

[crohnsgirlinpain]

What people don’t understand about crohns.

As a recent crohns sufferer I’ve noticed all the problems which come that are not all about the bathroom.

Yes. Stomach pains and bathroom breaks are a nightmare, including pain when eating food (when you love food!) but there so much more that no one gets!

Arthritis pain (which I had already before being diagnosed)

The throat sores, sore gums

The chest pains and burning sensations

The eye sores, itchyness and pain in the eyes (which is bad when you have make up on!)

The gut pain

The extreme tiredness, fatigue

Sickness feeling

Weight loss

The abscess (my pelvic abscess is a pain in the ass! - literally!) 😂

An so on! People don’t see of feel the struggle so they don’t really know what daily life is like!

[crohnsgirlinpain]

That IBD Moment When...

You wish so badly that pharmaceutical companies would keep in mind that not all people can easily swallow pills and they should not just be made in one size and one size only. 

[crohnsgirlinpain]

In the spirit of all these ~~back to school~~ posts…

Hi, my name is Lexi. I’ve got Crohn’s disease and some fucked up kidneys. Here are my two cents on college and chronic pain.

1. Take all of your meds with you. Seriously, even if it’s a huge gallon sized ziplock bag filled with meds you hardly ever need. Yeah, yeah, college dorms are small, but that is not the area to cut down on volume. (Hint: instead, bring 200% less clothes. Thank me later.)

2. Tell your teachers. ASAP. If you’re too embarrassed to talk with them face to face, (e.g. ME) just send them a quick email right after the first class. Let them know right off the bat that if you email them in the future about being “sick,” you don’t mean a head cold. (And bam: now they’ll probably know your name!)

3. File disability paperwork. Something I did NOT do right away and really regretted it. The word “disability” felt way too heavy, like I was making a way bigger deal about my health than I should be. Fuck that. Just file the damn paperwork, it’ll probably give you nice perks like more excused absences, etc. 

4. Prepare for hell. Imagine the worst day possible. Prepare for it. For me, that meant food I could stomach (saltines, cans of soup, etc.) (do NOT be like me and forget a fucking can opener), my electric blanket, a shit ton of gatorade, pain medication, and my dad’s Netflix password. 

5. Find a doctor near you.  Know where you’d go if things got so bad you could no longer deal with them yourself. Find out who is and isn’t covered with your health insurance, and write that shit down. I know it sucks. Just fucking do it.

6. Don’t hide. Chances are, you’ll find others going through the exact same thing. I know it’s personal, but just tell people. Tell your roommate. Tell your study buddies. Put a fucking ad in the school newspaper. Remind yourself you are not alone.

[crohnsgirlinpain]

Confession #2,688

It must be nice having people in your life who support you and don’t ignore your pain. It must be nice having people who you can talk to without feeling judged. It must be nice not fighting this all by your own.

[crohnsgirlinpain]

Summer with chronic illnesses

Hi chronic illnesses warriors I'm a couple of weeks into my summer holidays. As per usual my body detests stopping and has failed me again. I decided not to let crohns, arthritis, scoliosis, lupus etc. Stop me from having a good time. So I've tried to get out and see my family and friends. That has ended up with me being bedridden for 3 days now. I'm so down with these diseases. I've also been trying hard to get support from my government as I'm not fit for work but they are doing their utmost to try and stop me from getting any support. It's been 6 weeks since I've applied and no money. I'm literally worried about food for me and my dogs. It's been horrible admitting that I'm unfit for work but I had to. And now they are basically saying I should be working etc. I need a solicitor but can't afford one. My Dad doesn't really see how bad I am. As these are all invisible illnesses so he said to me yesterday "you need a job". If I could work I would be working. I'm a very strong person but recently I feel useless and very weak. However he has given me a home and that's amazing I will never forget that he did this. He is an amazing man and has helped me through the worst times of my life. I know one day I will have to help him too. I'm still mourning my old life before I was sick. I hope everyone is as well as can be. Be gentle with your body, mind and soul. Rest and take your medication. You are worthy of all these things. Please feel free to message me. I love hearing from you guys and will try to reply to everyone. Much gentle love Crohns girl in pain Xox

[crohnsgirlinpain]

if you actually think people who have ostomy bags/colostomy bags/literally any kind of medical device in them/on them shouldnt show off their body in public because its “inappropriate” or “gross” you seriously need to fuck off.

there is nothing, NOTHING, gross about the human body, disabled or not.

[crohnsgirlinpain]

[crohnsgirlinpain]

You only know the value of health when it is taken from you. We wear our own crown of courage in the face of chronic illness 👑

[crohnsgirlinpain]

Chronic illnesses day to day problems

Hey everyone Sorry TMI warning ⚠️ But crohns and chronic illnesses plus period = disaster of a week. I'm in agony and my period has flared my crohns and arthritis in my back so bad. I'm literally bed bound. I don't think I'm fit to do anything but I have to pick my Dad up from work and I could literally just cry instead. He has been so good to me so I'm just going to do it. I'm trying to prepare for my graduation too. Which is hard as I know it will be a really long day for me. I'll be up around 7am and probably not home until the early hours of the morning. Instead of being excited I'm just nervous but I'm sure adrenaline will get me through the day along with strong painkillers, Imodium and antisickness tablets. What a glamorous life!!! I have picked a pale dress so here is hoping I don't have any accidents! My Dad and my sister will be attending with me and not my mum as she completely screwed me over when I was in hospital last. She went on holidays while I was nearly dying and when I asked to be washed etc when she came home from holidays she refused me. There is a lot of other personal things she did which I won't go into but they cut deep. I don't want to feel sad on the day about this but I'm not ready to talk to her yet. It has made my life a lot easier to cut out negative people. The weather in my country is unusually warm for us and it has also zapped my energy. I personally always find the summer months more difficult than winter for some reason and always have a flare up of my IBD. I don't think my IBD is managed very well and I'm considering a new doctor. I've literally changed my doctor 3 times. So I'm a bit apprehensive about changing again. I'm also reapplying for disability allowance as I'm not fit to work. However I've be declined twice and I detest the system here. Not that I'm putting anyone down but people with alcohol and drug dependence have more of a chance of receiving it than people who are sick. Plus going through your medical history and current situation is horrible and horrible highlights just how sick I am. So I'm hoping and praying I get some financial support as I'm broke. I hope you all are as well as can be and once again thank you for following me and supporting me through everything. I love you guys. Crohns girl in pain Xox

[crohnsgirlinpain]

Physical illnesses are not worse than mental illnesses.

Mental illnesses are not worse than physical illnesses.

This is not a competition of who suffers more. We can do so much more together than we can apart. 

Personally, I love each and every one of you. I will defend you to the fucking last, my friends.

[crohnsgirlinpain]

Me, searching my body: where's the charging cord on this thing

[crohnsgirlinpain]

Reminder

You are worthy even if you are disabled.

You are worthy even if you cannot work or hold a job

You are worthy even if you cannot support yourself.

You are worthy even if you cost your loved ones a lot of money because of your medical care

you are worthy even if you are homeless

How you are treated speaks to the people in power and their priorities, not your inherent worth as a human being. You are beautiful, special, and important & your life matters. I know you didn���t ask to be sick or disabled, and anything that happened bc of that is not your fault. I love you <3 

[crohnsgirlinpain]

pls stop acting like being chronically ill/disabled is just a lack of effort to be healthy. stop telling chronically ill people they could be healthy if they tried harder, if they thought more positively, if we just believed we can get better we totally would!, if we got out of the house, ate this or that, did yoga, if we drank more water… stop. it’s likely nobody asked for your opinion, we know more about our illness than you do and if there was a way for us to get better we’d be the ones knowing about it.

[crohnsgirlinpain]

[crohnsgirlinpain]

hey disabled friends- lets play a game

list one of the dumbest things youve heard someone(friend or not) ask/say about your illness/disability/etc

Ill start…

“Do dislocations hurt????”