You Went Dirt Biking?! You Must Be Feeling Better!

Kawasaki kx100
My Kawasaki kx100, Monster.

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.

This sick gamer had to wear some compression gloves and I had been using my heating pad on and off all day. This is the side of me that people don't see in public.
This sick gamer had to wear some compression gloves and I had been using my heating pad on and off all day. This is the side of me that people don’t normally see in public.

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?

KenzieIBD

 

 

Save

Save

Advertisements

Labwork, Colonoscopy and Prednisone

Labwork, Colonoscopy and PrednisoneI 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!

http---signatures.mylivesignature.com-54494-178-DA18861C8BDD7966ECE2F6FD0E8A9143

Save

Save

Save

Save

#DearSpeakerRyan

Dear Speaker Ryan,

Hello, my name is Mackenzie. I’m 27 years old and I’m a millennial. I am one of those “sick people” that you want to end the insurance protections provided to people who have preexisting conditions. You see, I have a preexisting condition that I was diagnosed with at 24 years old. It’s called Inflammatory Bowel Disease(IBD). It’s an incurable autoimmune disease that affects my intestines. It causes chronic inflammation in my colon and rectum. When my symptoms flare up it’s pretty terrifying to see bloody diarrhea coming out of my body. Especially knowing there’s nothing that I can do to stop it.

Because of the insurance that I have, I am currently a contributing member of society. I have a good job, a house. I pay my bills on time. I’m one of the lucky people because I can still work and there may come a day where I can’t. There are people who are on disability because of their disease and to no fault of their own. Do we not to get to live a full life because we’re sick? We didn’t ask for this!

If this insurance were to be taken away from me because I have a preexisting condition, it would be hard for me to still hold down a job because of what IBD does to me. There are times I’m going to the bathroom 10+ times a day. Some people I know have gone 50+. Can you imagine that? Having to have a bowel movement 50 times in a day?

The only medication that I could probably afford if I lost my insurance is prednisone. Prednisone is not recommended for long term usage because of the side effects it has. Long term usage of steroids can cause bone loss, type two diabetes and an increased risk of infections. The medication I am currently on is very expensive and I would not be able to afford it without insurance. It’s the only medication that works for me currently besides steroids. I have failed two other medications. One I’m allergic too and the other causes such severe side effects it will put me in the hospital. Currently, there aren’t a whole lot of medications that treat IBD so I’m stuck with steroids and biologics. And biologics are very, very expensive.

In the US alone, it is estimated that 23.5 million people suffer from an autoimmune disease. This is not including cerebral palsy, diabetes, ALS, etc. If you took the sum of all of these people it would end up being over 10% of the population under 65. Are you willing to condemn these people to have to live without their medications and doctors because of pre-existing conditions? I would really love for you to tell me that to my face. And all of my friends. And everyone else that has a preexisting condition. That we don’t deserve insurance because we’re sick. I wish that you could walk a mile in my shoes and feel how I feel when I’m in a flare. It’s exhausting, terrifying and extremely painful.

I don’t understand how you think people can afford high-risk insurances because they have a preexisting condition. I can’t afford to spend hundreds of dollars a month on insurance that has a high deductible and a high maximum out of pocket. It would send me into a mountain of debt that I wouldn’t be able to pay off. And I’d probably have to declare bankruptcy every couple of years because of it. This isn’t any way for someone to live their life. And medical expenses are already high enough.

I really hope that you and some people in the Republican party will reconsider your position on this issue. But I’m not going to get my hopes up. The way you people speak about sick people you seem to think that we deserve to die a slow painful death. Is that what you want?

Regards,
http---signatures.mylivesignature.com-54494-178-DA18861C8BDD7966ECE2F6FD0E8A9143

 

 

 

If you would like to tell Paul Ryan how you feel about preexisting insurance protections you can contact him here. I will also be sending him this letter and Tweeting it to him.

Flare Update

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.

http---signatures.mylivesignature.com-54494-178-DA18861C8BDD7966ECE2F6FD0E8A9143