#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.

#MotivationMonday

Obligated

Colitis & Psoriasis

I realized this week that when my psoriasis is doing good my colitis is doing bad. Which sucks. I can’t win when it comes to my immune system. I feel like there’s always going to be something wrong.

I don’t know if my immune system can only focus on one part of my body at a time. Or if it’s just in over drive all the time and the Humira can only focus on one system at a time? All I know is that it sucks.

Next Tuesday I’m going to go and see my PCP. I think I might have a sinus infection. I’ve had a lot of phlegm in the back of my throat the last couple of months. So I’ll find out what’s going on with that on Tuesday.

I’ve also been super tired the last week. I’m not really sure what it’s in relation to. Whether it’s the Colitis or whatever is going on with my sinuses. All I know is that I’m getting run down.

30 Things About My Invisible Illness You May Not Know – Invisible Illness Awareness Week

1. The illness I live with is: Inflammatory Bowel Disease. My doctors aren’t sure if I have Ulcerative Colitis or Crohn’s Disease.
2. I was diagnosed with it in the year: 2013
3. But I had symptoms since: 2007
4. The biggest adjustment I’ve had to make is: Realizing that there will be days I shit myself.
5. Most people assume: IBD makes you poop your pants. And that because I look healthy, I am healthy. When that isn’t the case at all.
6. The hardest part about mornings are: Having the energy to get out of bed and sometimes making it to the bathroom.
7. My favorite medical TV show is: Grey’s Anatomy
8. A gadget I couldn’t live without is: Computer
9. The hardest part about nights are: Staying asleep
10. Each day I take 10 pills & vitamins. I also have an injection every two weeks.
11. Regarding alternative treatments I: have not tried any yet. I’m thinking about trying acupuncture.
12. If I had to choose between an invisible illness or visible I would choose: I’m not sure. Being ill either way isn’t fun. I hate that people can’t always tell that I’m sick but what disease do you pick if you want people to know that you are?
13. Regarding working and career: It can be hard sometimes to function at work when I’m in a flare and struggling.
14. People would be surprised to know: There are days it’s all I can do to get through work because I’m so tired. After I get home I don’t have the energy to clean or go buy groceries. That there’s times I’m going to the bathroom 10 times a day. There’s days I’m extremely depressed and I just want to sit and cry all day. There’s times I’m in so much pain I just want to scream at the top of my lungs.
15. The hardest thing to accept about my new reality has been: I might have to have surgery. I might have to have an ostomy bag someday. And it scares the hell out of me.
16. Something I never thought I could do with my illness that I did was: I haven’t really had that yet.
17. The commercials about my illness: Make it look like IBD is only about going to the bathroom when it is really so much more than that.
18. Something I really miss doing since I was diagnosed is: Having the energy to do whatever I want. Not having to worry about medical bills.
19. It was really hard to have to give up: I have a fructose malabsorption along with IBD and it’s been hard to give up a lot of veggies, fruits and juices.
20. A new hobby I have taken up since my diagnosis is: I haven’t started one but I want to learn how to sow and knit.
21. If I could have one day of feeling normal again I would: Live life to the fullest. Probably go skiing all day or ride my motorcycle.
22. My illness has taught me: Life isn’t fair and will never be fair. Doctors won’t always have the answers you want. People aren’t always nice.
23. Want to know a secret? One thing people say that gets under my skin is: telling me that I look healthy when my immune system is attacking me. Telling me to take better care of myself.
24. But I love it when people: Ask me how my illness is going and tell me that they’re praying for me. It lets me know that they care.
25. My favorite motto, scripture, quote that gets me through tough times is: Be brave
26. When someone is diagnosed I’d like to tell them: Fight like hell and educate yourself.
27. Something that has surprised me about living with an illness is: The ignorance of people
28. The nicest thing someone did for me when I wasn’t feeling well was: Just be there for me. I tend to just live in my living room and bathroom when I’m not feeling well. And a lot of people don’t always know when things are getting really bad.
29. I’m involved with Invisible Illness Week because: awareness needs to be raised for these.
30. The fact that you read this list makes me feel: like you care.