Planning For a Flare up

The answer to that question may seem like an obvious no, but my husband and I are learning there must be at least a few things we should try and do in case he has a serious flareup. When he was hospitalized last year, we were lucky to have his sister here at just the right time who also happened to be able to stay the extra days we needed her to be here. Not everyone can be so flexible. When she went home I was doing everything- including driving Jason to doc appointments, sometimes a few in a day- with my 3 young kids. I cracked a joke that I was his taxi, but really, that's just how we had to do it. When he started having symptoms on our holiday, I don't think I realized how much of the trauma from last year still existed. This past week, he's had a few days that he's been really sick, and even he isn't sure if it's one thing or his Crohns. I was suddenly panicking in my head over the pressure of going through that with him again, and wondering if I would be able to do it. I'm not sure what worries me more, the fact that it seems more and more his body is relying on meds to keep a balance of everything, or the potential for him to have 2 big flare ups in less than a year. In the last few years since he started methotrexate, I've seen a change in how his body responds to it, and I don't want him to get to the point where we're looking at other options, because that means more meds. All things considered, anyone with this type of disease knows you cannot plan for what will happen, but you have to know your symptoms and be on top of getting help before things get out of control. In a follow up visit with my doc for some of my own personal tests, we spent a lot of time talking about how Jason and I need to have a plan in place in case he does get really sick again- that means, having back ups, and people who can help right away at a moments notice. I give a lot of credit to those with this condition who do it on their own- it can't be easy. In fact, I know there's no way anyone could get through a serious flare up without some kind of help or support. I'm thankful that I can do that for him. But it does put in perspective how much it affects our family as a whole when the doc is telling us to have a plan. And thinking back on last year, when we didn't. My goal is to find some support locally, either through a counsellor for people with chronic conditions, or to start a group. There has to be a connecting point for people with chronic sickness, either for emotional support, or physical, hands on support whatever that may be for them. I found it frustrating last year trying to get connected somehow and not finding very many options at all for people with Crohn's disease. I'm not really sure yet what that will look like. How do you handle flare ups? Do you have support in place to help counter the shock and severity of a flare up? If you could have a support group to connect with, what would that look like for you? Being honest: I'm really hating Crohn's disease this week. I hope you're feeling well wherever you are.

Vacations, Suntans, and Flare ups

We all just got back from a 2 week holiday in Florida. Sooo nice to get away and be somewhere warmer and get some sun!! We had 3 kids with us on a 6 hour flight, and they did amazing. Only downside is that we only got a few good beach days, but it was still wonderful. It's been almost a full year since my husband's last major flare up, so going on holidays we made sure we brought the usual things: medication, vitamins. Nothing too much out of the ordinary. About a week into our holiday, we sent a few hours at the beach, and my husband ended up with a wicked burn on his feet. Of all places! Like deep red burn, and don't ever touch him kind of burn. Out of the 7 of us, he got the worst, and it was nowhere else on his body. After some thought, we figured it could be side effect of prednisone which he takes on occasion. Anybody else have that happen? For the rest of our trip he kept his feet covered when we went out, and put layers and layers of aloe vera gel on to soothe the soreness. It's still a bit shocking when you notice signs of a flare up. Even if you've been diagnosed for years or more, they always come at unexpected times. Along with his burn, his ankles started to swell, which for him, is a typical sign of an impending flare up, as he usually gets arthritic flares in his ankles and knees. So when i saw this, I got worried and wondered what would happen next. Last year this time he was hospitalized and treated for sepsis due to severe inflammation from an infection he developed from a Crohn's flare up. That's the short story. Maybe we are more aware now of what signs to watch for, and I think that's a good thing, but I still worry, because I also know that one flare up can be so different than another. How do you handle flare ups or potential ones while you travel? Thankfully we were spending time with family and they were very understanding, but I know that is not always the case.

When Family Sickness Comes

So I'm sure it's been close to 4 weeks that I've been sick. Unrelenting flu mixed with a cold, mixed with a cough, mixed with lack of sleep. All of us. My hubs went to the doc today to check on an ear infection that won't go away. Doc told him I'm probably still contagious and not to share anything. Any other person I would think, it's no big deal! It's just a cold! But sometimes I'm reminded of how sick he was last year, and how I definately don't want him that sick again. And things go through my head about what an ear infection could turn into. I was reading a facebook post tonight and someone was asking about how to handle people who ask "how are you feeling?" And for those with Crohns disease who are constantly sick, when you get sick of telling people you are sick, and they stop believing you, what do you do? I have to remind myself sometimes that my husband has a constant chronic illness- admittedly, it can be hard to realize he isn't feeling well unless he tells me. There are generally not a lot of outward symptoms. Sometimes he is very honest with me, and other times he tells me what he feels like. But I was thinking today how important it is that he follows his doc's advice to get lots of rest and eat well, and take care of himself. Because that totally affects how his body will respond to this illness. With 3 young kids at home, who mostly want to share our bed with us, it sometimes feels impossible to expect any real sound, uninterrupted rest. And when I'm sick, and i need to rest to recover, it's hard to expect him to take over when in retrospect he may need it more than me. When mommy gets sick, it's a big deal. When daddy gets sick, it's an ever bigger deal, and I need to look out for him. Something I'm working through and trying to get better at. Hope you're well.