Friday, March 31, 2017

Coping with Crohn's: And All That You don't See:

{Though that's the one thing about this disease, you actually don't see any of it}

There are times that I can't stress it enough that this disease is so misunderstood, yes I am very well aware that I look healthy and completely normal on the outside {which is why you technically don't "see" anything}.  I am not looking for sympathy, nor have I ever, in any way, shape or form; I just want to share an understanding of what this disease does. And when I let you in as a part of my circle, you do actually see the affect this disease has on our life. That it truly takes a village to raise our two small children {I can't thank the people in my life enough who are always there stepping in to watch our babies when I need it}, you can see the toll it takes on my body, the exhaustion, etc. 

As I not only cope with my Crohn's Disease, I cope with much much more... 

I have severe Arthritis... And it can be really quite awful at times. The past 4 months it has been flaring like you wouldn't believe, to the point where I will have zero mobility in an arm, I can't sit because of my hip, I am limping around because of my knee. Our kids see this the most, poor Charli has to help me so much {grab things, do things for her brother, etc}, there are days I just cry I'm in so much pain, but other days are truly great, so there's a positive!

I suffer with Migraines... They come and go, but my active disease causes them and they can be so painful causing me to be so sick and not able to leave the bathroom floor. But thankfully it is not every day, so again, a positive! 

I have Anemia... I am not only Iron Deficient but also B12 Deficient and go in for injections {que why I am always exhausted}

I have Hormonal Imbalance... {this is new} There is a lot of stuff going on right now causing this and this is one thing they are trying to get to the bottom of. I am losing my hair because of this, I have mood swings {poor Steven and the kids}, and I can and do lose upwards to 10lbs in any given week due to so many of these things {weight fluctuation is something they have to monitor because I can lose so much so quickly}. 

And you could imagine the stress I feel from dealing with all of these things on top of everything else, especially with a husband who has such a big job and works endless hours.

So why am I sharing this with you now, you might ask? Well, because the past several months have been a sea of tests, procedures, doctors visits, you name it. They are trying to get to the bottom of some things. It has taken a hit to my system and because of a lot of these {little} things going on inside my body my hair has been falling out in clumps... I have been used to hair loss here and there since I was diagnosed, but nothing like I have experienced recently. It was starting to become noticeable on the outside. So a big change had to happen, one I honestly did not want, but I had to cut my hair in hopes to get it "healthier". It is still extremely thin and I am still adjusting to this whole new look. We don't know how much more will fall out, if any, but this is just another thing I have to deal with. 


But as I always say, I feel incredibly lucky because no matter what I am going through there is always going to be someone in this world who is going through something much worst. So I am thankful for a team of Doctors who work diligently on me, getting me into the right treatment to help me feel better. I am thankful for two wonderful children and an amazing husband who supports me, and for the incredible network of family & friends that are always there to lend a helping hand!
Here's to praying for some good results soon! 




4 comments:

  1. What an incredibly positive outlook you have! You are so amazingly strong. I know you probably have your bad days and feel like that's not true, but it so obviously is and shines through in your children and pictures (a reflection of YOU.) I'm sorry this is your life's trial, but you're handling it with such grace. I'm sure God is proud.

    ReplyDelete
  2. So sorry you've been having a rough few months. I'm praying for you and so glad that your family and close friends are there to help you. Love the new hair cut too!!

    ReplyDelete
  3. How brags of you to share your journey! It sounds like such trying times right now. Lots of thoughts & prayers for your ongoing battle with this! Do you follow Her Heart & Home? One of the sister's (Hope) has Chrohn's as well and often blogs about it.

    ReplyDelete
  4. Thank you for sharing this! You are one of the most positive people - always smiling (on the outside at least). Your family is so, so lucky to have you - You clearly always put them first, despite your pains. Always thinking of you, lady!! xoxo

    ReplyDelete