Why I Love(And Hate) Humira

Humira feels like a weekly reminder that I have an incurable autoimmune disease. That this is what my life is like now. That this is what I have to look forward to. And at times it’s depressing. I wish I didn’t have to be on medications but I know that this medication is my best option right now.

I’m not one of those people who’s goal is to get into remission and go off of my medications. My medications are the reason why I’m in remission. I don’t what to know what would happen if I had to go off of the Humira. I’m sure the results would not be good though. I also don’t want to risk building up antibodies to this medication. Once that happens I won’t be able to go back on it and that’s not work the risk to me.

It’s hard though to deal with the weekly shot. For me it hurts a lot. I can’t wait for Humira to have a sting free option. Some people who take this medication don’t feel that much of a sting but for some reason I do.

Do you have any medications you dislike? Why do you dislike it? Do you have any medications that you do like?

Until next time!
KenzieIBD

#IBDAdvocacyTag

What form of IBD do you have?

On paper I have Ulcerative Colitis but my doctor has mentioned a couple of times that I probably have Inderterminate Colitis. So that’s pretty much what I identify as. There also isn’t a Inderterminate Colitis diagnostic code so that doesn’t help either. There was also that one time I had a pathology report come back and say Crohn’s Disease 🤷‍♀️ And the Humira is currently working fairly well and there is mucosal healing in my colon and rectum, so it’s hard to say for sure which IBD I have.

But at the same time there is a lot of speculation in the GI field that IBD is a spectrum disease. The most important thing is that I like my GI doctor, the medications are working and we know where my disease is most active.

Why is IBD advocacy so important?

So people know that they are not alone. Having a chronic disease can feel so isolating when you are first diagnosed. It is so helpful to meet people who know what you’re going through. And can help you navigate a very hard time in your life.

Describe a socially awkward moment with IBD.

Oh where to begin?

There was this one time on Facebook that I got told that I needed to read the healing word of God and pray more to cure myself.

Which was extremely frustrating because I’m not an avid Christian (I’m more or less agnostic) and my faith has nothing to do with my illness. Shit happens and I somehow got this incurable disease through no fault of my own. And praying to God to get healed isn’t going to cure me. Some scientist some day will find a cure and that will be what I need. Will it be through delivine intervetion? Who knows!

But telling someone that they need to read the bible more and pray more just blames the person who got ill and victimizes them. People who are chronically ill need compassion and empathy. Not someone to tell them where they went wrong in life.

What common stigma do you run into?

That it’s not that serious of a disease. That it just makes you poop. That it’s just a stomach ache and some diarrhea. That I don’t look sick.

All of these stigmas are so incredibly frustrating. There are people who have died from complications of this disease. IBD is so much more than pooping and a stomach ache. And I don’t look sick because I’m good at faking being well. And it’s my colon and rectum that are affected, not my face.

These stigmas are just a few of the very important reasons we need to raise awareness for IBD.

What do you want other people to know about IBD?

So many things.

That at times it is a hard disease to live with. But along the way you will meet some pretty incredible people who will become some of your best friends who will be there for you no matter what. If you are able I highly recommend going to a retreat for people with IBD. It will be an amazing experience for you and you won’t regret it.

That this disease affects me in so many ways. And just because I don’t look sick, doesn’t mean that I’m well.

The more I work and the more I do the more tired I get. But it’s not the same type of tired as everyone else. I fight my body every single day. It’s exhausting.

Until next time!

Explaining What Happens to People When They Lose Health Insurance is “Fearmongering”?

When does explaining what happens to people when they lose their health insurance turn into fearmongering?

Fearmongering according to the Oxford dictionary is:

The action of deliberately arousing public fear or alarm about a particular issue.

Now I don’t see it as fearmongering. It’s the honest truth that if someone with an incurable disease loses their health insurance could have a very hard life or possibly die of complications. I’ve seen people with IBD lose their health insurance and end up in the hospital multiple times due to flares and complications of IBD. Many patients need medications to stay out of the hospital to try and keep their IBD under control. And when you no longer have access to medications, things tend to not go well.

Now, my dad got accused of fearmongering after he said that he’s mad at Republicans for potentially getting rid of the ACA because I could have a very hard life or potentially die if I ever lose my health insurance. Which could very well happen. And with all of the uncertainty around healthcare and what some Republicans in office have said that they want to do it’s a real concern of mine, my husband, and my family.

What would happen to me if I got laid off and couldn’t get rehired again? What if my husbands insurance took too long to kick in or wouldn’t let me enroll until open enrollment? Or I can’t work anymore and have to go on disability?

I need my medications to stay functioning. And my medications are extremely expensive without health insurance. There is no way I would be able to afford then without it. And I am stuck with biologics.

This person my dad was talking to also said I needed to go get a job with insurance and stop expecting the government to take care of me. And I hate it when people make assumptions like this. I have a good job that has health insurance. And I will keep working until I can’t anymore. I also don’t expect the government to hold my hand and take care of everything. I want a fighting chance to LIVE. And that fighting chance to live is what I expect out of the government.

What I also don’t get is what is so fucking wrong with wanting the government to take care of the least of us? The people who need healthcare? But I have yet to hear of a way to convince someone to actually care about other people.

Do Motorcycles Upset Your Colitis?

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My 2013 Kawasaki Ninja 650r

I have been riding motorcycles for about four years now. I started out as a passenger on my fiance’s motorcycle and eventually got my own. I have not found that riding upsets my indeterminate colitis. Now, I definitely don’t go riding while I’m flaring or not really feeling all that well. I don’t recommend that at all! Not something that you really want to have to worry about when you’re on a motorcycle!

If you are worried about riding while having IBD there are a few things that you can do to try and be ready for any situation. You could carry an emergency kit with you just in case something happens and you’re not around a toilet. Here are a few things I keep in my emergency kit:

  • Extra underwear
  • Wet wipes
  • Extra pants
  • Plastic Bags

I also pretty much always have Imodium on me but it’s not normally something I take with me while riding. Like I said, I don’t normally ride my motorcycle when I’m not feeling well. I don’t have to depend on it to take me to work or anything, fortunately. I ride for fun when I can.

I hope everyone has a good week! Safe travels!

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**Do you ride motorcycles? What kind of bike do you have?

Be Your Own Advocate

Be Your Own Advocate (1)

One one of the most important things I’ve learned since being diagnosed with IBD is that you need to be your own advocate. You know yourself best. I’ve learned that you can’t always rely on your doctor to read your chart every time that they deal with you. My GI two different times has tried to put me on some form of mesalamine even though it’s listed as an allergy in my chart.

Now, should my doctor go over my allergy list when he wants to prescribe me a new medication? Yes, I think so. Seems like something pretty simple to do. But he has yet to do that. Or if he does read it he’s ignoring the fact that Lialda is listed as an allergy. So when this happens it’s up to me to remind my doctor that I can’t have mesalamine because it will put me in the hospital. This is one of the reasons why I feel that being your own advocate is so important.

Here are some other ways that you can be your own advocate:

  1. Educating yourself about your disease.
    I feel that everyone should know what the signs and symptoms are of their disease. It’s always a good idea to know what your body is doing and what is normal and not so normal. It’s what allows me to figure out that I’m going into a flare. Or if something new pops up that it could be disease related.
  2. Asking your doctor questions when you have them.
    One good thing to do is to write down what questions you have for your doctor. Find an app(like Keep by Google) to write down notes in so you’ll be prepared for your next doctor’s visit. It sucks to have questions for your doctor and then forget to ask them while you’re there. I’ve done that before. So I always do my best to write them down beforehand.
  3. Speaking up when you don’t feel well.
    You don’t have to speak up every time you don’t feel well but you definitely need to if you’re not getting better or you’re getting worse. You know yourself best. I really wish I had explained to my doctors what was going on better when I was on Lialda. Maybe they would have figured it out sooner? Who knows now but I’m going to do my best to make sure I don’t make that mistake again.
  4. Read your medication side effects.
    I feel that this is super important. I wish I had read the side effects of my medications from the get go when I was diagnosed. I learned the hard way that I should of. It took me being in the hospital for my doctors to realize that I was having a bad reaction to Lialda. The adverse side effects mimic a flare-up of IBD symptoms. So when my doctors and I thought I was flaring I was in reality extremely sick from the Lialda. I actually had my dose doubled while I was on it and quickly went down hill.
    Are side effects scary at times? Yes, but you(or someone else) needs to know what they are so you can keep an eye out for them.
  5. Learn your facilities patient portal.
    I love the patient portal. It’s a pretty awesome tool. It’s nice to be able to send a quick message to my GI when something is going on. And my nurse will reply to me on it at times or just give me a call depending on what is going on. I like sending messages over leaving long voicemails. Sometimes it takes a while to explain what is going on. I also like being able to go over my lab work myself and see how things are progressing.

This list isn’t necessarily a direct way to being your own advocate but you can utilize them to be a better advocate for yourself or a loved one. You have to learn about medication side effects and about your disease so if something happens you can talk to your doctor or your pharmacist about it. Being your own advocate isn’t always easy but you have to watch out for yourself. If you’re having trouble speaking up, see if a loved one or a friend can help you out.

Hope everyone has a great week!
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How are you your own advocate? Any tips or tricks?