Friday, September 13, 2013

Travel woes

The joys of having a rare condition just do not stop. Today I looked into my insurance with my work and they do not cover pre existing conditions. I know that it is not the end of the world and I will simply buy it some place else but I have to say I am so sick of having to take extra steps and precautions for every move I make. The world is really not set up for anyone with any sort of special need or anything out of the ordinary. I try my best to not get discouraged but sometimes I just want to scream. I know I am not the only one who needs special accommodations. What do these people do? How do they get through life? I know I find it hard enough I can't imagine having any other obstacles. I think when you have a chronic illness it is important to keep a positive attitude, but sometimes I don't want to have a positive attitude I want to take all the obstacles in my life and kick them over! But as anyone with a chronic illness will know, you can't fight it. You can play hopscotch with your friends all afternoon and try to pretend you're not in pain but eventually whether you like it or not you have to give in and go to the hospital. I use to have must more courage when I was a kid. Now I've gotten really good at convincing myself that I'm ok with missing out on things. For example "I can't wait to go to that party on Friday." "I'm too sick to go to the party." "I didn't want to go to the party anyway." It might not be true but honestly what are you going to do about it? There is no point in getting upset about it. All you can do it smile, make yourself some popcorn, turn on a movie and get some rest!


  1. I have been following your posts and I like your blog. I think that you are a good writer. I hear you about the insurance thing because I worry too. I have often thought that I was one pink slip away from disaster. My factor is expensive and I depend on insurance. I did a series about it on my blog called “Programs To Keep Your Platelets Sticky”. You can find it at:
    BTW, congratulation on your recent nuptials, my best to you and your "one and only". Keep writing.
    Ray Perreault

  2. Ray! thank you so much for writing to me! I am in the process of reading your book right now. I will look into the insurance information on your blog. Thank you so much!
    Ryanne xo

  3. The opposite was true of me; when I was young I was more timid and reticent to do things, and more prone to accept the disappointment that bleeds would bring. I lost count over the years how many things I've missed out on because I'm in pain. However, the older I get, the less I am willing to accept this as the be-all-end-all. Sometimes I need special accommodations, and I'll push the envelope to find out exactly what can be done to make sure I don't miss out on things. The way I see it, I missed out on way too much when I was young, and I'd be damned to miss out on things now just because I'm afraid of having a bleed. Life is too short to miss out.
    I understand your frustration completely about pre-existing conditions. It's something that I've had to deal with my whole life. There have been years where I haven't had any, and have had to wait in line for social insurance to make sure I could get treatments. With the help of my treatment center, I found a program that ensures my coverage is contiguous so that I need not worry about a lapse in coverage (in the United States, if there's a 6 month lapse in health coverage, you start the pre-exisiting condition clock all over again). I don't know what the policy is in AB, but it might be worth a phone call to your center to see what programs may be available. May not help this time, but it's good info for the future.
    Remember though, sometimes it's okay to kick the obstacles, just don't kick too hard! ;)