Sunday, November 11, 2012

friends, family, and how they they SHOULD deal with a friend with chronic illness

  I kind of feel like a slacker lately, I just really haven't felt like working on this blog, but now I feel guilty,haha.
   Ok, in answer to the question, yes I got approved for disability, and I am now working on getting some kind of medical coverage.
  I'm going to talk a little bit about something Ive been thinking about, when it comes to chronic illness in general, and how your friends and family deal with it.
   First, in regards to friends, I know it it is hard to understand what I'm going through, hard to just get it. That's ok. Just please, be patient, I cant go do all the things I used to, and when I try, understand I cant keep going like I could before. That doesn't change WHO I am, it just changes how I do things.
I have come to really understand who are my real friends, who really cares, it isn't hard to see, just pay attention to who still calls once in awhile, or stops by to just hang out.
  We used to have a lot of bar-be-cues here, I make a really killer pork tenderloin that I am quite proud of, and LOTS of people would show up, eat some pork, have some drinks etc..lots of fun. However, I noticed that after I got sick, when I was no longer able to go hang out as often... people stopped showing up, the parties got smaller and smaller until we stopped having them all together. I'm a big boy, I can handle that, but nobody even shows up for the kids' birthday parties anymore, and that is sad.
  My wife and I have talked about this a few times, we know why nobody comes anymore. Its because I'm sick, dealing with my illnesses has pretty much become our lives. So, we don't have much else going on, nothing of interest to a healthy person anyways.
  I think there is more to it than that, though.. when I got sick, I almost died, (Ive said that before, but bear with me here) and I think that many friends don't want to face that. They don't want to think about it. I understand, neither do I. But get this, I don't want to just sit around and get all awareness-y either. If you ask, yes, Id be glad to tell you what you want to know, but that's not ALL i do, not the only thing Ive got going on, I am still the same nut ball I was before, I can still tell a dirty joke you've never heard before. I still have the same stories about crazy fun things we did growing up, like before. I am still the same person I always was.
  So, I guess my message to anyone that may have a fried with some kind of illness is this...have you stopped by lately? when was the last time you called, just to chat? I promise, your friend would love to hear from you. You could offer to stop by and hang out, watch a movie or some Monday night football...or whatever you USED to do together...It really does mean more than you may realize to your friend.
  that is pretty much all I have for now, but I do promise I will be more attentive to my blog,haha.
Remember, I have APS and EDS...they DON'T have me. 


  1. Well said. I invite you to read my piece I wrote a few years ago and feel free to contact me anytime

  2. Very well said. While reading, which sounded like it was coming out of my own head......I also realized, I quit my part of friendships. I quit stopping by my friends. I guess when I have to run around, I never have the energy to do everything that needs to be done. All I want to do is get home and crash. I quit dropping by my friends, so I can own my part of why things have changed. Sometimes, I do pickup the phone and make a phone call, but not often. I need to do that way more often.

  3. You know how I feel about you and how I feel about this damn disease we share.It seems in so many ways that you at the age you are have been dealt a blow that no one should have to deal with at your age.Then I realize I have been dealing with it since puberty and just did not know what it was.YOu know my story and why I am paranoid about saying to much.We will go forth and we will find someone who can put this on the front burner.