An Immune System, what’s that?

My body is no long familiar with what an immune system is, and quite frankly I’m not sure I am either hah! They say laughing is contagious and I’ll tell you, I wish lack of immune system made me more vulnerable to that instead of making the common cold seem like a never ending soap opera! That’s one thing I wouldn’t mind catching! Being treated with anti TNF inhibitors, immunomodulators, biologics, etc.. all of the fancy-shmancy medications we owe our life to come with a price to pay. Side effects are inevitable at some point in time living with a chronic illness. One of the most common is making us more susceptible to infections whether that be viral, bacterial, cancers (yep), and other immune sexinessdeficiencies or diseases. And there’s no way around this side effect because it really just means the medication is doing its job. They all act in different ways but for the most part they all are compromising or “working on” our immune system since Crohn’s disease is basically an abnormal immune reaction to the GI tract which causes inflammation and complications.

My body never “caught” things more often than the normal person before. The doctors kind of just put thoughts in my head to be extra careful. Being exposed to certain infectious diseases can be extremely dangerous to a person with a weakened immune system, and by that I mean life threatening. We, as patients, have a responsibility to be aware of this but it does make it easier when medical professionals and the ones we are closest to are aware to (and this is where vaccines come into place as well, another post on that controversy to come lol). I once kind of freaked out at the carelessness of Baystate hospital for putting me right next to someone with TB when I had a serious flare, a very bad kidney infection, and was on multiple medications that significantly lowered my immune system (yeah that happened). But other than that I’ve never really experienced anything significant.

That is until… I wasn’t responding to the usual dose of Humira which is an injection every other week so my doctor increased my dose to once a week. TADA! Crohn’s buh-bye! I feel great! Until I start experiencing allergies (or you may call them sensitivities) that I have never had before. Muscle soreness and much longer recovery time after the gym. Then… Here comes “cold and flu” season so my body decides it’s just going to catch everything under the sun! It has been about a month and a half and I have had little to no relief. Not only is this wearing on the body but on the mind as well. Doctor visits, urgent care visits, physical therapy, xrays, MRI’s, blood tests, sinus infection, laryngitis, tendinitis, I could go on and on of what the past two months have been.. This sounds pretty miserable right? Yep it is. But it’s the price I’m willing to pay. I no longer really have to worry about a bathroom nearby every time I eat (YEAH IT’S A MIRACLE), and stomach pain is few and far between. (We all have our bad days that catch us by surprise.. like the week of my period might as well just stay in bed for a week straight between cramps and the mini flare I get every single time.. but we’re not focusing on that here.. so, moving on..).

I decided to take things into my own hands and try different methods of controlling my symptoms so I can regain quality of life. I will be writing another strength.jpgpost to expand on this but for right now I’m just trying to raise awareness to the fact even though a person with a chronic illness may be in remission, it still affects their day to day life. It is all about balance and what a patient will endure or physically can endure to get relief from symptoms of their disease. I might consider my Crohn’s Disease to be in remission although my doctor hasn’t clinically declared this, my stomach symptoms are almost obsolete, but my quality of life just isn’t there yet. I’m working right now to change this because I truly believe I can (especially the mindset of it). I’ve been about ten years with no little to smileeeeno remission so sometimes you just man up and take one problem over the other. Just keep in mind, we might not complain to the world about these issues we face (only to the ones we love the most 😉 ) because it really is nothing compared to the pain and frustration of having a flare up of disease. As I say: throw a smile on despite the struggle of getting out of bed, life could be a lot worse, we have a lot to be thankful for, and its just another day in the life of a Crohnie!

 

-xoMichelle

Potty Emergencies 101

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“Excuse me sir, if you don’t let me use your bathroom I am going to drop my drawers right here and use your floor.” Don’t tell me that as a Crohnie that thought has never crossed your mind or (if you have the balls) those words have never come out of your mouth in a public place. We struggle with this subject more than people could even imagine. But, thankfully, those important political people are finally taking their heads out of their healthy asses and listening. Which we are very thankful for (lol). If you aren’t familiar with it, a law was passed because of a 14 year old Illinois girl in 2005 who had Crohn’s disease and had gotten turned away from using a public restroom. She had that embarrassing moment we all are much too familiar of, a potty emergency where she didn’t quite make it to the potty. I can seriously sympathize with this, it has happened to me a number of times. This law is known as Ally’s Law. It states that a person with an eligible illness gets immediate access to an establishments restroom even if it isn’t labeled for the public. Although this isn’t passed in all states, they are working on it. It just takes a little research on your state’s website to find out if your state has the law.

In Massachusetts (where I live) Crohn’s and UC patients should have a “bathroom access” or “I can’t wait” identification card. It makes this whole process easier. You can receive one of these pretty easily. I received mine from the CCFA, which I became a member of and they automatically mailed me one. There are a few different foundations that provide them. I do know though, mine Imagefrom the CCFA has my name and identification number so I can prove it’s actually me if someone is rude enough to question it. I have used it multiple times before whether it be to cut people in line (yes, that in fact has had to happened) or just to use an employee bathroom.

Being my strong stubborn self, I did get into a confrontation with a business owner once because of this. And I intend to get him in trouble. Over the years I have became much more knowledgeable about my disease and certain laws and such which has lead me to be very strong-headed about it. I was with my mom on the way to a mall by me when all of a sudden, I got the urge. As a Crohnie when you get that urge, there is NOTHING that is going to make it go away. My mom put her foot down on the pedal and got me as fast as she could to the closest store. It was a convenience store with a big white sign on the front door “NO PUBLIC RESTROOMS”. “Well this is great” I thought to myself, thank god we have this law now. I scurry into the store and asked very politely if I could use the restroom, I have Crohn’s disease and I need to use it now. He said “NO.” A very firm no. My mom followed in after me and she explained to him it is illegal now to turn down a person with a medical condition from using the bathroom. He simply said he didn’t care and no matter what I wasn’t using his bathroom. I was appalled. First of all how someone could be so rude. And panic set in. If anyone wants to talk about “anxiety” which on a side note, I don’t mean to offend people but people need to really reevaluate their “anxiety” and all the meds they take for it, its absurd coming from a person who could easily be on all the anxiety medicine in the world just for the pure fact I have to deal with this disease every day of my life, there are other healthier ways to deal with it. But anyways… my “anxiety” went through the roof and I ran next door to the pizza shop which also had a big white ‘NO PUBLIC RESTROOM” sign, but thankfully I could see the bathrooms so didn’t even ask I just ran! That potty emergency ended up working out, but others haven’t gone that way… If you know what I mean.

All jokes, sarcasm, and hostility aside, this isn’t an easy subject to address. But as Crohn’s disease patients we have no choice but to address it. It can be embarrassing and humiliating but I can promise you, YOU ARE NOT ALONE. We have all experienced it and more times than not if you quickly explain your situation people will be very understanding. The law is slowly and surely becoming in our favor and I highly suggest getting a “I can’t wait” card from the CCFA. Keep these things in mind when you have your next potty emergency and hopefully they can go a little smoother than we’ve experienced in the past! And don’t be afraid to SPEAK UP!! 🙂

-xo Michelle