I actually had this said to me the past week. A common misconception with people who have a chronic illness is that if we’re out doing something fun we must be feeling better. Which isn’t always the case. And certainly isn’t the case with me.
I had to explain to the person who said that that I’m still sick. And that it could be a few months before I start feeling better. My doctors are still working on some stuff and it all takes time, unfortunately. Especially when you’re waiting for specific lab tests to be done.
What people don’t see is how much these fun activities cost us in terms of energy, recovery, and pain. And what I let people see while I’m out in public is normally completely different from what I show at home. When I’m at home there are days that I’m curled up with my heating pad all day. Or my joints are killing me and I’m in tears from the pain and trying everything I can to find some relief.
So yes, I’m still sick. And yes, I decided to go ride my dirt bike for about an hour with my fiance last weekend. There are days that you just need to get out of the house and go do something. It’s important for people with chronic illness to get out and do stuff and still have fun. Even if it costs us. I don’t want to be sitting at home feeling sorry for myself.
Now, I’m not always successful in that regard. There are days that I feel too ill to go out and do much of anything. And at times I do end up feeling sorry for myself. Which is all part of having a chronic illness. Things aren’t always rainbows and sunshine and that’s ok. You just need to eventually pick yourself back up and keep going.
Which is what I’ve been trying to do. I’ve been flaring since mid-July. Could you imagine not doing anything for two months? Or more? I’m thankful that my flare isn’t so bad that I literally can’t leave the house. Because I’ve been there before. This time around I’m mostly having a lot of abdominal pain. Which can still make activities difficult. But I fight through it. I’m only functioning as well as I am right now because of the prednisone. I can only imagine what things would be like if I wasn’t on it.
So the next time you see or hear about your friend or colleague doing something fun who has a chronic illness. Try to not judge us too harshly. Many of us have gotten pretty good at faking being well in public. You won’t see the recovery that takes place behind the scenes at home. Maybe someday you’ll get to see the pain behind the mask. But instead of assuming that we’re doing better, how about asking how we’re doing instead.
Have you had someone say something like this to you before? What did you do?
I had an appointment with my GI on August 30th. I’m glad that they were able to get me in sooner than November! We really needed to talk about what’s been going on. It’s hard to do that over the phone at times when I have to go through Dr. M’s triage nurse.
As of right now, I have a colonoscopy scheduled for October 12th. This time, I have to prep for it in a hotel, though. Which I’ve never done before. I have gotten some tips from my fellow IBDers on Twitter so I will make sure to share those things with you when the times comes!
I’m not particularly excited about this colonoscopy. A month ago I was pretty dead set on not having one but I’ve resided to the fact that I probably need one. I haven’t had a scope since May of 2014. And Dr. M has yet to do a colonoscopy on me. So it’ll be good to give him an idea of what my colon looks like.
I will be staying on prednisone for now. I got to go down to 30mg from 40mg! Which is nice. I may eventually switch over to budesonide. I think we’re waiting for my labs to come back before we decide that.
The Prometheus antibody test will be done on September 10th. They’re actually having a mobile lab come to my house to take my blood. Which is pretty neat. As of right now, my insurance doesn’t want to pay for the test. They think it’s just “investigative” and that we won’t get any good information out of it. But, don’t you want to know how well it’s working? Although, at the same time. It would actually be cheaper for me for the test to be denied. I’d have to pay more if the insurance did decide to help pay for it. Because of how my insurance plan works.
So, we will see what happens. And I will continue fighting through this abdominal and joint pain that I’m having. These lab results can’t come back fast enough!
After being on prednisone for 5 or 6 days I finally resided to the fact that the rectal pain was not going to go away on it’s own. I called my GI on Monday and left a message for his nurse. I heard back from her a couple of hours and she said that I could use the hydro-cortisone suppositories that I used in December when I last had rectal pain. It worked then so I’m hoping it works now.
If the suppositories don’t work it’s on to plan B. My nurse didn’t say what plan B involves but I’m pretty sure my GI would want to do some sort of scope. Whether it’s a colonoscopy or a flex sig. And I don’t want either. I’m really hoping that between the prednisone, hydro-cortisone and Humira that my flare will finally be gone by the end of the week.
I will be so happy when I get off of this prednisone. I hate prednisone brain. It makes me all emotional and over react to things I wouldn’t over react too. I can’t wait to be off of it.
I’m so ready for this flare to be over. I want this rectal pain to go away so I can go back to walking and sitting without pain or discomfort. It’s getting nice out and I want to be able to walk my dogs more. I was also trying to work out more so I can get this prednisone weight off that I’ve had for two years now. I have stuff that I want to do and I feel like my body is holding me back. Fingers crossed that this round of meds work and that I can get back to as ‘normal’ as life gets when you live with a chronic illness.
Today I saw my GI doctor for the first time in a year. Which to me is a good thing. It means that I wasn’t sick enough to have to go in for a visit. I did get sick a few times over the last year but they worked with me over the phone thankfully. It’s a three hour drive one way to go see them.
One thing that I was irked about when I first got there was filling out the paperwork for past medical history. There wasn’t any place to put down that I have Indeterminate Colitis. Only Crohn’s Disease or Ulcerative Colitis. I ended up writing it in myself. In my opinion this needs to change. Indeterminate Colitis need to be recognized nationally. I shouldn’t have to write in what I have on a piece of paper that lists forms of IBD. I also should have the right diagnosis in my chart.
Anyway, my doctor so far is happy with how I’m doing. The only thing he’s concerned with right now is the joint pain. There isn’t a whole lot that he can do about it right now because I’m already maxed out on the Humira. And the only other option is chronic steroids which I don’t want to do right now. Long term steroid use is NOT good for you. Which leads me to believe that my GI thinks I might have arthritis. Or at least joint complications due to the IBD.
So right now I’m stuck dealing with the joint pain. It’s the worst in the mornings and sometimes at night after a long day at work. During the day they don’t always hurt once they’re warmed up and I’ve been using them for a while. I should also start doing some daily hand exercises to see if that helps. I already found a few online and saved them to Evernote. Hopefully they help and make a difference.
I also got some blood work done today. I’m hoping those labs will be back tomorrow. My WBC count is being checked along with a ESR panel. I’ve never had an ESR done before but it checks for inflammation levels in your body. Hopefully my labs will be back tomorrow! I’m interested in seeing how I’ve been doing since last year.
On my clinical care summary that my doctor always writes up before I go home it mentioned that my BMI is above normal range and that I should talk to my PCP about weight management. Which did bum me out a bit. I was on steroids for 10 months last year and that did not do me any favors weight wise. I was working out regularly earlier this year and did manage to lose somewhere between 7-10lbs. I definitely need to get back to the gym and get in shape. I have about 10 more pounds to lose before I’m back to where I was before I got super sick in December of 2013. Looks like it’s time for me to find some motivation to get back to it.
One thing I have been struggling with after getting off of steroids after 10 months of use is losing the weight I gained. At my heaviest I was 17lbs above what I normally weigh. I’m now about 13-14lbs above what I would consider my normal and it’s taking a while to get that weight off. I’ve been off of the steroids since Halloween and I’ve only lost maybe 2lbs.
I found out on a thread on reddit.com/r/crohnsdisease that a lot of people with IBD struggle with the weight loss. I’m glad I’m not the only one, but at the same time it sucks. I had to go out and buy larger clothes because of the weight gain. I will now have to have a set of clothes that are for while I’m on and after I get off of prednisone. I didn’t want to buy new clothes. I had it in my mind that I would just deal with my clothes how they were and that it would just motivate me to lose the weight. But then I realized that I was starting to rip seams on my work clothes and I wasn’t going to deal with that. I went out and bought new work clothes shortly after that.
I’m working on going to the gym more. I’ve been averaging 2 days a week and I’m going to do my best to get to the gym three days this week. I’ve also been watching my diet. I think I’m eating too much sugar. I’m keeping track of my diet in MyFitnessPal and that is giving me a good idea of my sugar intake.
What’s frustrating about the whole diet thing is that what people normally give up to boost their weight loss, i.e. pop & coffee, I’ve already given up. Although I didn’t really drink a whole lot of coffee to begin with. But I did drink pop and fruit juice before I got diagnosed with the fructose malabsorption. So the only things I drink on a regular basis is water and milk. It’s just frustrating. I would of thought that the weight loss would be a little faster than it has been. I was hoping that it was going to be faster.
I’ve been making sure to do cardio and weight training when I go to the gym. I think I’m going to add in some Yoga a couple of days a week when I’m not at the gym. I’m also working on walking my dogs more. It’s good for them and for me.
One thing that I ran into this week was that I was really set on going to the gym 3 days this week. This was going to be the week that I would do it and then my colon decided to freak out. And it sucks. I’m trying to better myself but I feel like my body is holding me back. I don’t want to push my body too much because I don’t want to risk going into an all out flare. It’s depressing at times.
What I should focus on is how many inches I’m losing and maybe not necessarily the weight loss. I took some measurements before I started working out regularly and I need to take some new ones soon. I’ll probably do that in a couple of weeks.