Chronic Diesease

I am wife to a man with a chronic disease. Robyn had Crohns Disease which I have mentioned before and I have gone into some details about before as well...

What I don't think I have ever really gone into is just how it effects our family and truly how it effects me as not only the wife but as the mother too...

Its hard not knowing when your spouse will be debilitated by pain, when your spouse will be confined to a hospital bed on IV steroids, when he will be able to eat, when he will be able to rest without fighting pain all night... but you know that all of this WILL happen. Its a matter of time before you have to watch him wince in pain as his digestive system attacks its self and makes every meal more difficult than the last.

I will never know personally how it feels to have this disease, I will never understand how he copes with it all everyday, I will never truly know the pain, but I certainly have my fair share of the worry I have my share of the pain, and most of all I have more than my share of the stress.

As wife and stay at home mother I have my role here in the house of making sure that the house is clean, the laundry is done, the meals cooked and the children and the husband cared for. Crohns throws a monkey wrench in the works of my life. When Robyn is admitted to hospital (and he has been twice in this past month) I have to split my time. I have to split time between our home and the hospital, I have to split time between him and the kids, I have to split time all the time. I have to plan even more in advance than I normally would because I need to plan what will be made for all meals, who will watch the kids, how I will get to the hospital, when I will get back. I have to plan what night am I going to stay late at the hospital so that I can get home early another night, I have to plan what he needs and what I have to bring to him, I have to plan when I am doing the laundry so that I can bring home his dirty cloths and get it cleaned and back to him. All this while taking care of me too... and lets just say that I am the last to get cared for in these situations...

I sleep less soundly when I am alone in our bed, I crave more sleep and admit to rolling over and trying to sleep in a little even knowing the kids are awake and ready to start their day. I have to find things to completely capture my attention throughout the day so I am not calling for updates every ten minutes. I have to be busy all the time to distract myself from feeling helpless in his struggle, alone in our relationship because his concentration is on his health.

Back when it was just us, me and Robyn, when we had no kids, no rings, nothing but each other I could spend every moment he needed me in the hospital next to his bed, and I did. I would go to my college classes and then straight to the hospital where I would do my assignments and homework with him and stay as late as the nurses would allow. Back when it was just us, I had no idea what to expect and foolishly thought that this was rare and that hospitalization was an occasional thing and once you were better you were better and that was it. Back when it was just us, it didn't matter if the laundry was done, it didn't matter if the supper was cooked it didn't matter that no one was at our home at any given hour...

Now though with our little family in tow, I must do all of those things. I must make sure that the family is taken care of and that things run smoothly with Robyn in the hospital. I must help the kids not to be afraid of the IV and the big hospital room, the Doctors and the patients that may share that room with Daddy. I must ensure that both the kids and I are taken care of at home to make getting "better" his only priority. No matter how long he is "better" for.

I'm Back!

I feel like I've been neglecting the blog for so long... I know I have good reasons and I know that its all that can be done when life falls in your lap and says hey you thought it was all smooth sailing from here well here's a hiccup for ya!

So here are the basics of the situation my husband Robyn has Crohn's Disease which is an autoimmune disease which causes chronic inflammation in the gastrointestinal track. It can be quite painful and limits his activities and what he can eat at times. He became very sick just before I met him and was diagnosed just weeks before we started dating. In a very short time he became progressively worse and required surgery in May of 2004. He recovered quickly and has been relatively healthy since then, through watching his diet and taking better care of himself he has rarely had any pain or issues. Then a few months ago he had noticed a bit of a change and requested through our family Dr to see his specialist (whom he had no need to see for 5 years) once he finally got into see the specialist he requested a routine test to be done in his office in a week or two. 

Which just happened to be last week, Tuesday to be exact. 

On Tuesday morning he went for his test and was told that everything was fine and that he would follow up with the Dr soon and that they wanted to do another test (an upper GI)  but it could be a long wait as this is done through X-ray. Tuesday afternoon he wasn't feeling very good and I could see he was finding it hard to get comfortable. I recommended that he go lay down for a while and that it may help him feel better. Not long after he became violently ill and started vomiting he called the emergency nurses' line and they recommended that he go to the ER to get checked out. After a 9 hour stay in the ER, a set of X-rays showed that he had a small bowel obstruction. We caught it early and were very lucky as this can rupture quite suddenly and be fatal in some situations. 

So he was admitted and watched very closely for a few days as it resolved on its own, they believe that it was just caused by a flare up of his crohn's which could mean that he could be sick again anytime or it may have resolved completely and will settle on its own. 

I think that is the worst part about having this disease you never know whats happening because everyone reacts differently to the meds and to different foods and to different situations. But that is the nature of the beast when your body attacks its self on a regular basis.

We were very lucky to have 7 healthy years with little to no complications and are hoping that he will be able to have another very long stretch between this flare up and the next but since there is no cure for this disease we will deal with this for the rest of our lives.

It was very scary and hard to deal with knowing that as a wife there is nothing I can do other than bring him the things he needs, visit as frequently as I could and take good care of myself and Delaney while he was recuperating in the hospital. I admit that I broke down a time or two (maybe from the stress, maybe from the fear, maybe from the hormones.... ) and its hard not to worry knowing that there is not a thing I can do! 

He was released from the hospital early Saturday morning and returned to work Sunday claiming he was feeling well enough... I took him at his work but worried all day! 

I also had my baby shower on Sunday and was busy having fun with my girlfriends when I got a call that our car had broken down/wasn't working properly...

So now we are in the process of figuring out what is going on with our car and making sure that Robyn is doing ok. The worst part of this is that he works about an hour from home and is staying at work while we figure out the car situation, so after being without him all of last week we got him home for one night and lost him again (aka I cant keep my eyes on him to be sure he isn't over doing it or eating things that are really bad for him...) So in the middle of all of this I have not been crafting or cooking or baking or doing anything relatively creative, and since we were all in and out of the house so much over the last week or two the house work got neglected and I spent all day yesterday picking up toys, doing laundry cleaning out the fridge and on my hands and knees cleaning floors. 

I am hoping to get some crafting done over the next few days even if its just to ease my mind and give me something to do to relax... hopefully there will be something new up soon!

But in the mean time if your interested check out this link to the 

Crohn's and Colitis Foundation of Canada 

for more information.