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

Fall Down, Get Back Up.

Days like this make you appreciate the good days. The frustration of feeling like crap all the time lately is really getting to me. Anxiety of not being able to go anywhere unless there is a bathroom within running distance -__- All of it that we deal with daily has just been magnified lately. Oh, and by the way some ofIMG_1006 you that follow my blog. I did end up getting kicked out of school even after going all the way to the top. At least the President of the school had some sympathy for me, thankfully he let us have some peace in all of this. I just want to give a quick shout out to the Director of Nursing and Dean of Health at STCC for making my life a living hell for two and a half weeks, threatening me via email/letter, along telling me to consider a new profession. (I’m still a little bitter) But anyways, I’m no longer attending nursing school this year, talk about a knife to the stomach. Literally, the stress sent me into a bigger flare than I was already in. But hey, that’s what this life is all about isn’t it. You fall down, you get back up. Everything happens for a reason.

Working my two part time jobs is about all I have in me to do. And yes, I feel like a piece of crap sometimes to the people around me. I feel we (us, Crohnies) often get labeled as “lazy” or “unmotivated” but what a lot of people don’t understand is the strength it takes to get through the day and still keep a smile on our face while doing it. Pain medication has almost become a daily thing now, which I hate, just so I can get through dinner with friends, getting out of the house, etc. But that shit (excuse my French) takes a lot out of you and also makes me pretty emotional.. More than your average girl on her period lol Speaking of periods, being in a flare and having your period at the same time is I think one of the worst things I’ve experienced. Thankfully I’m on birth control where I only have to experience this every three months hah God bless you ladies with complicated Crohn’s cases that get your period every month. I feel for you.

Since my colonoscopy my doctor has changed my whole medication regimen. I came off of the Entyvio and prednisone (thank the Lord). I am now on Uceris, Methotrexate, and Humira… Again. This is my second time on Methotrexate and my third time on Humira. I’ve never taken them together though so hopefully this is the lucky combination. I had a meeting today with my Humira Advocate and after she left I was thinking to myself: “Okay, I’ve had Crohn’s now for over 10 years and in the past 6 of those 10 I have never been in complete remission but I’ve been close to it for a total of maybe 6 months”. That’s kind of craziness. I have hope though that something will work, sooner than later.FullSizeRender (8)

With no cure, that’s all that gets us through this disease is hope. At this point my biggest hope is that these side effects don’t throw me over the edge and have to come off of the med like every other time. I’ve always said with Crohn’s, any other disease, or in a perfectly healthy person: life is quality, not quantity. Even though a lot of the time my quality of life is pretty shitty, the days that it’s good makes it that much better. You don’t know if you’ll be here tomorrow so do what makes you happy and feel good at that time and place. Don’t worry about what other people think, keep that smile on and do you.

-xoMichelle