It’s so daunting to think of. The fact that I’m going to change my diet. But I’m tired of not feeling well. And food is one of the things that I can control.
I’m getting tired of not feeling well. And my doctors are kind of meh 🤷♂️, when it comes to what to do with me. I’m symptomatic, but I’m not in a flare, and my blood work is normal. So, what can you do? My rheumatologist wants my biologic to stay the same. And I’m currently on 3mg of budesonide. But I’m sure once it’s all gone, I’ll be done with it.
Which only leaves diet. Well, and exercise(yoga for me!). Along with seeing my chiropractor and acupuncturist. This past weekend when I was seeing my chiropractor and my acupuncturist they both mentioned diet to me when I told them what was going on. My body is having a lot of immune responses right now, and is very unhappy.
So now, I’m trying to find out what I can about the Autoimmune Protocol(AIP). And the Paleo diet. And it’s all a bit overwhelming and daunting. I’m hoping to get another book that helps to explain it more and what I need to do. Along with keeping a food journal again.
I know that my food tolerances have changed since the last time I did a food journal because I can eat cucumbers again. Which is weird, I know. But it’ll be good for me to figure out what foods I can eat and what I can’t.
The AIP will be slightly more complicated because I also suffer from fructose malabsorption. Which means I don’t process fructose very well. Fructose is found in a lot of plants, veggies and fruits so I will really have to double check everything when I start up this diet.
And that is where meal planning comes into play. I found a meal plan layout that I like. And I found out about a meal planning website that has a lot of the AIP meals on it and it will help you schedule everything. But it’s a paid service and I’m still deciding if I want to try it or not. I really wish they had a 7 day trail or something.
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.
December 5th was my yearly visit with my GI doctor. It was a very long day by myself(my trusty copilots are all out of town ☹). My doctor is 2.5 hours hours away(350+ miles and 5+ hours of driving!) and my appointment was delayed over an hour(procedures ran log, which is fine. I don’t want my doctor to rush those). But I did eventually see him. And I came home with a goodie bag.
Over the last month or so I’ve been getting more symptomatic. I’m not really in remission, but I’m not in a raging flare either. But symptoms are bad enough some mornings that I get delayed leaving the house to go on site for work by 2 hours or so. Which sucks. And I try to watch how much Imodium I’m taking.
So me and my doctor settled on budesonide. Which is better than prednisone! But I can’t take any other medications because I’m allergic or get severe side effects from them. And my last colonoscopy showed that the Humira has made the inflammation in my colon go down a lot. And my doctor is pretty sure I have #IBS along with #IBD(yey me!). So I’m kind of stuck with steroids at the moment.
9mg for 10 days(yey samples!), and then I will go to 6mg for a month and we will evaluate how I am after that. Hopefully it helps things settle down. My joints have also been really achy, which is unfortunate with my line of work. But fingers crossed I don’t get crazy side effects from it 🤞
Wandering? Wandering through life? The internet? My head?
Lost? Lost in thoughts? Dreams? Reality?
It’s hard to say where I have been in the last year. All of the above really. Things at work got hard with a coworker retiring. Like ridiculously hard. Working too much over time, in too much pain and dealing with too much stress to function kind of hard. But I think I came out the other side with my sanity sort of intact. I keep looking over my shoulder waiting for it to happen again. It was such a struggle, and I almost didn’t make it with my sanity intact. It was to the point I was debating on finding another job. But I made it.
And then I felt like I was screaming into a void when it came to raising awareness for Indeterminate Colitis. But trying to deal with that on top of work and planning a wedding got very hard(I really wasn’t in a good place this past year, I was pretty negative and very salty about the whole situation). I was putting a lot of time into blogging, and not enough into myself. Especially while working a full time job that at the time was sucking the life out of me.
Around this time last year was the last time I actually wrote a blog post. It was for Colitis Ninja and it was on this very topic. Feeling burnt out and everything. I ended up taking a long hiatus and took as much me time as I could with everything else going on.
I had realized at the time that not all IBDs were created equally. And I was tired of dealing with it and fighting the system. But I realized this week that maybe me and some other people raising a fuss over the fact that there were options missing for Indeterminte Colitis patients may be making some headway.
When I was making the #MyIBD info graphic for the Crohn’s and Colitis Foundation this week I found out that there was an option for people with Indeterminate Colitis this year. Which is pretty amazing. It’s a step in the right direction. I can now share my actual story instead of having to write a comment about what I actually have.
Anyway, I think I’m back. I’m still navigating my feelings with everything. But I do kind of miss blogging. It was my place on the internet to share my story and vent when I need too.
I’m not sure how often I’m going to post, but I’ll try to be back soon.
I actually had this said to me the past week. A common misconception with people who have a chronic illness is that if we’re out doing something fun we must be feeling better. Which isn’t always the case. And certainly isn’t the case with me.
I had to explain to the person who said that that I’m still sick. And that it could be a few months before I start feeling better. My doctors are still working on some stuff and it all takes time, unfortunately. Especially when you’re waiting for specific lab tests to be done.
What people don’t see is how much these fun activities cost us in terms of energy, recovery, and pain. And what I let people see while I’m out in public is normally completely different from what I show at home. When I’m at home there are days that I’m curled up with my heating pad all day. Or my joints are killing me and I’m in tears from the pain and trying everything I can to find some relief.
So yes, I’m still sick. And yes, I decided to go ride my dirt bike for about an hour with my fiance last weekend. There are days that you just need to get out of the house and go do something. It’s important for people with chronic illness to get out and do stuff and still have fun. Even if it costs us. I don’t want to be sitting at home feeling sorry for myself.
Now, I’m not always successful in that regard. There are days that I feel too ill to go out and do much of anything. And at times I do end up feeling sorry for myself. Which is all part of having a chronic illness. Things aren’t always rainbows and sunshine and that’s ok. You just need to eventually pick yourself back up and keep going.
Which is what I’ve been trying to do. I’ve been flaring since mid-July. Could you imagine not doing anything for two months? Or more? I’m thankful that my flare isn’t so bad that I literally can’t leave the house. Because I’ve been there before. This time around I’m mostly having a lot of abdominal pain. Which can still make activities difficult. But I fight through it. I’m only functioning as well as I am right now because of the prednisone. I can only imagine what things would be like if I wasn’t on it.
So the next time you see or hear about your friend or colleague doing something fun who has a chronic illness. Try to not judge us too harshly. Many of us have gotten pretty good at faking being well in public. You won’t see the recovery that takes place behind the scenes at home. Maybe someday you’ll get to see the pain behind the mask. But instead of assuming that we’re doing better, how about asking how we’re doing instead.
Have you had someone say something like this to you before? What did you do?