Carving Your Path

Over the years of having this blog I haven’t been very consistent with posting but I have been consistent with writing. The challenge for me is deciding what to post and what to keep to myself. But then my mind goes back to when I first started this and why I continued. I started writing for myself as an outlet, but I continued because of the amount of feedback I was given and the amount of people I have helped. I’ve been extremely open while writing this blog. I talk about the real things and the ugly things no one wants to. But I now realize this is why it has helped people.

Something happens when you become physically the healthiest you have in your entire life. It’s not something easily explained. It’s almost like the disease was never there, it never existed… Until it appears again. When I say this I don’t mean the disease itself but the impacts it makes on your life. These can be some of the most frustrating moments in your life. There is no cure for Crohn’s Disease. Symptoms may disappear at times, but it always remains with you. Some how, some way. You face challenges you otherwise wouldn’t. You just have to decide whether this builds you up or breaks you down.

As some of you may know, I have had a lot of obstacles to overcome with my school and career path. I’ve always felt I was meant to work in the medical field. I’ve been holding on to this for years. For those of you who aren’t familiar with what had happened in the past… I was accepted into nursing school and was kicked out because I had negative titers for some immunizations (I never converted when I received my vaccines as a child so I am now not immune to these diseases). We fought and fought with the school but lost the battle. Now that I am healthy and on less medications I wanted to revisit this possibility. I wasn’t ready to completely shut this door. I’m following the proper protocol, with an infectious disease doctor. But my last visit with him wasn’t too promising. Administering some vaccines could be deemed as malpractice. I have my follow up appointment tomorrow. My doctor redid my titers to see if anything has miraculously changed. We’re praying for a miracle but I also need to prepare myself for this door in my life to close.

These are the types of things I am talking about. Now, everyone goes through bad times, and is faced with challenges, but it can be difficult coming to terms with this while living with a chronic illness. This is especially true for the newly diagnosed or patients who have been in remission before. You are never prepared for this. Even, after more than ten years of being diagnosed I am still not prepared. This disease has never ruled my life, it is one-hundred percent a part of me, but it isn’t who I am. I haven’t let it dictate me succeeding or failing. Although it has made me carve new paths along the way, I have to look at this as new opportunity. I don’t give myself any other choice.

This though, is one of the hardest challenges I’ve been faced with. I never thought I’d have to overcome things (because of Crohn’s Disease) while in remission. The frustration is being healthy finally and still not being able to do the things you want to do. Like I said I have been holding onto this career path for years. Closing these doors can be hard but the only way to move on is by finding another one to open. I feel defeated at moments, which you will, but you have to rise up and out of it somehow. Having awareness that you are going face these types of obstacles because of your illness will make a huge impact on how you react and your ability to find the good in it.

Life comes at us hard sometimes, and there are an unlimited amount of ways we can react.  Ultimately though, the choice is ours to carve our own path no matter the circumstance.

-xoMichelle

 

Pushing Myself to the Brink

So today was my first infusion of Entyvio. This may sound like a foreign medication to most, and well that’s because it is. It has only been FDA approved since May and then came out in June. I knew this day was going to come that I’d start on my last option (for now), but I just wasn’t sure when. Starting a new medication for me is not exactly a new thing. I have been on almost everything in the book as you all may know from my previous posts. This medicine is a lot like Tysabri (which is a bit more popular, used for CD, UC, and MS) except it doesn’t seem to have the side affects that Tysabri hentyvioas, especially the PML virus which is scary as hell, look it up. When my doctor told me that it was relatively low risk and an infusion once every six weeks I was in! I’m always excited to start on a new medication because it kind of gives me a new light on things, “maybe this will work” goes through my head every time. But this was a little bit different.

I am having so much more pain than normal. I’ve been on prednisone for a week now and usually I am eating the whole household and feeling like a million bucks. Not this time, something is different… I was keeling over with pain this past Sunday and had to resort to pain medication, which I hate to admit. I hate the thought of having to take pain medication, I can usually silently manage my pain and most of the time the people around me wouldn’t even know. Not lately, it’s been pretty unmanageable pain. And the worst part about it is I’m having flank pain too as they call it… Aka possible kidney stones. Wonderful.

I can literally feel my insides swelling. I’m not talking bloating I’m talking tissue swelling. It sounds gross but it’s pretty damn uncomfortable. I eat and I swell. It’s been off and on but also been making me a little nervous that something else is going on. Hopefully not but we’ll give it a little while for this prednisone to work some more and then figure it out.

This all makes me nervous because I am finally ready to grind down and go back to school full force this fall. I have my classes set-up and start next Tuesday towards applying to the nursing program this coming spring. This weekend is also my 22nd birthday and I was hoping to get out and have some fun! I probably will, becIMG_8188ause that’s what I do.. I push myself even when I don’t feel good. Sometimes probably a little too hard but oh well. Like I say “it’s my life, let me live it”. It’s actually KILLING me right now to be sitting in bed exhausted and in pain because I bought some new Nike sneakers and gym clothes today on my way home from my appointment and all I want do is try them out! Lately going to the gym has been the only thing mentally keeping me going. It’s my happy place to feel good about myself and blow off some steam. Even if that only means speed walking on the treadmill and lifting 5 lb. weights (when I’m having an off day physically). Actually I might do that later tonight. Hopefully I’ll be feeling a little bit better after a nap.

It’s frustrating having to be cooped up. I mean I don’t have to be but my body just reaches it’s limit sometimes and I have to take a step back. I’m not sure if lack of sleep because of prednisone or the new medication that did it to me today but I can barely function right now and these hot flashes (prednisone side affect) are god awful. Today I wanted to make it a fun day in Boston with my mom after my appointment but prednisonemy body was telling me otherwise. We headed to the Wrentham Outlets after I was done with the infusion and it lasted about an hour. I was so fatigued, nauseated, and swollen we had to leave. Not to mention my extremely crabby attitude and mood swings (also due to prednisone) didn’t exactly make for a fun time.

Now, this is all just a waiting game. Pushing through each day while I wait for my body to hopefully react in a positive way to Entyvio. I have another dose in two weeks, then four weeks, and from then on every six weeks. My doctor told me it could be up to three months to see how much it is potentially going to work. I’ve decided though, unless I am in the hospital I am not going to let it keep me from school this time. I will not withdraw this semester, actually even if I am in the hospital, I will do whatever I can to keep at it. I need to, for my own mental well-being.

Having an invisible disease is wearing on the mind. Very wearing. People assume because you look good and push yourself that you’re fine. I don’t blame them because how would they know unless they’ve experienced it? Sometimes though I just want to have them walk one day in one of our [Crohnie’s] shoes. It would probably change their life, actually not probably, it would change their life.

-xoMichelle