Thoughts On Living With An Illness...Opening Up, Shutting Out, and Coping Methods

I have always thought of myself as a very open individual when it comes to my health condition. There are people that I will share my story with in all the detail they want, and then there are people I might not share as much. I have no problem talking about my health, and I do not have a problem with others talking about it to their family/friends, but for some reason there are people in my life that ask how I'm doing just to ask (not really caring about the answer), so they can then go and talk to others about it, and at that point I shut down and don't reveal anymore to them. As do I shut down the ones that ask me how I am and then turn around and say I'm faking it because "I don't look sick".

I tend to shut out the "worry warts" (only when it comes to my illness...not all together). This is different from those that are genuinely concerned. The "worry warts" literally freak out with nearly anything I do (whether it's school related, work, leisure time, or when considering having kids). They see my disease rather than seeing me. I consider myself to be a relatively independant person and when one starts to worry about me to the point that it interferes with my life and try to make decisions for me, it annoys me. I was diagnosed over 10 years ago...I know my body better than anyone else out there and it just rubs me the wrong way when when someone repeatedly tells me I shouldn't do something because it might be too dangerous for someone with my health condition. Sure, I might get run-down easily, but that does not mean I want to stop LIVING. I know my body well enough that if I really don't feel good on a given day, I might choose to stay home and rest. That doesn't mean that I don't ever want to do anything...I just don't want to do anything that day. :)

Then there are those that are genuinely concerned. They see me for me and they know how to separate me from my disease. They ask questions, but do not judge the way I live my life, infact, they help me embrace it. They care about my health, but they know that I'm determined to live. I love things that most adults (and even kids) love. I love water slides and fast roller coasters. I love the rickety carnival rides that appear once a year at State or County Fairs. I love going to sporting events and concerts. I love the idea of sky diving, riding in a hot air balloon, or taking a helicopter ride in the mountains someday. The ones that are genuinely concerned know that these are just some of the things I enjoy and they know that these are activities that many people enjoy (healthy or sick)!

The "worry warts" would not see it that way. They'd tell me I need to be more careful. Sure, that may be true to an extent. Perhaps I wouldn't be able to stay out as long as someone that is healthy. I have to know when to quit. But the "worry warts" want to be the ones to tell me to quit before I even start. It's almost like they want the control. It can be dificult to deal with at times.

I think my illness has shaped the person I've become, and I see it as a blessing rather than a "disease". Sure, I have bad days (who doesn't?), but when it comes to my condition, I embrace living with it. Do I hope for better treatment? You bet! Do I hope for a cure? Absolutely!! Living with an auto-immune disease and the experiences I had as a child, teenager and now as an adult gave me great insight as to what I wanted to do with my life. I wanted to work in healthcare and help infants, children and teens who are chronically/terminally ill. My original goal was Medical School. However, that was one thing that was not physically possible for me. So, I went into Dietetics/Nutrition. I want kids (and their parents) to know that they have someone who understands their situation and WANTS to help them. I empathize with their frustration, hurt, various coping methods as well as their hopes, faith in proper treatment and the list goes on. I want to be able to share that in my profession and I really feel that this is God's Will for me.

Well, this has gotten longer than I thought it would. Thanks for checking in! Can't believe this Sunday is already Palm Sunday and the beginning of Holy Week leading into Easter and the day after Easter is when I find out if I get that Dietetic Internship I so badly want.

God's Blessings to everyone! I'll write again soon!

Amanda

New Jobs and Crazy Colorado Weather!

Well, prayers have been answered and Aaron has a new job!! We are thrilled that he has this job. He is working for a company that develops online grade book systems for schools K-12. Right now he is starting out in customer service, but after his training is done and if he is able to catch on to the work, etc, then he will move to a different level. This is very exciting news as Aaron has been looking for a new job for quite sometime. He just needed something different. Eventually, after his 90 day "trial", he should become eligible for benefits which is great news all around!

Now, we are just waiting to hear if I get into my internship. I find out April 5th, so if you all could please keep me in your prayers for that, I would greatly appreciate it! This is something I have wanted for a very long time and am so close, yet so far away from getting it.

Colordao weather is keeping us entertained. Last week it was in the 70's all week until yesterday when the temperature dropped to 20 degrees, and we had a crazy snow storm (about 5 inches in our area) and over a foot of snow in the mountains. But thanks to unpredictable Colorado weather, today was about 50 degrees, and nearly all the snow is gone already on the front range/foothills. One of the many reasons we love Colorado!!

Hope everyone is doing well! It's hard to believe today is the 1st day of spring, and we are just a few weeks away from Easter! Wow, time flies!

Take care all!

Amanda

Vegas

Well, Vegas was a great time! We got there at 9AM on Monday March 1st and did not even have to wait to check-in to our room (which was so nice)!! Then, we got a FREE upgrade to a spa suite which was the best thing! It was great to be able to come back to the hotel from a fun-filled (all-be-it FULL) day of walking, shopping and ofcourse gambling and be able to kick back in the hot tub and watch TV. Plus, we kept the hot tub filled each night which added the bonus of increasing the level of humidity in the room (something that is good for my dry lungs). And I think it was because of the hot tub in our room that I did not get sick while in Vegas. Some pics of our room and the view we had!

A couple of views of the strip from our room and inside our room!

Aaron was the one who gambled (I'm terrible with gambling). He only plays Roulette and always has a set amount that he spends out-of-pocket in Vegas and if he wins, great and if not he stops (which is nice so he doesn't drain the bank)! :) He ended up coming out well ahead of what he laid on the roulette table and made enough in gambling earnings to pay for all of the meals we had, the show that we went to, and part of the hotel...so that was nice.

Inside Ceasar's Palace

M&M World!

One really exciting thing that happened while we were in Vegas was that we got to meet Dick Butkus (played for the Chicago Bears NFL team). Aaron is a Bears fanatic, so this was like heaven for him. He signed a picture that Aaron purchased and then just sat and chatted with both Aaron and me for about 20 mins. He was very down-to-earth and humble...just a really great time! Here is a pic of us meeting with Mr. Butkus!

We went and saw a Hypnotist (Anthony Cools) while we were out there. He was hilarious! The stuff that he had some of the people doing was just so funny I almost cried! It was hard to come back from Vegas, but it's back to routine and that's nice. Well, I best be going. Hope all is well with everyone! Take care and I'll try to write again soon.

Amanda