chronic illnessfamily

5 Things I’ve Learned This Week About My Life With Chronic Illness

I feel like I’ve been out of sorts this week so I am trying to regain my bearings. Endo has not been good to me this week but I am trying to maintain a positive outlook and look for the good in life. So here are five things I’ve learned this week about my life with chronic illness:

1. One-on-one time with my dad rocks.

My folks live 5 hours away but they try to come visit every 6 weeks or so (to see Abby of course) so I’m glad that I still get to see them often. Occasionally while they are visiting my mom and I will head out for some shopping and girl time but very rarely do my dad and I get one-on-one time so I was stoked that it worked out for him to join me for the Coca-Cola 600 on Sunday. He is the one that introduced me to racing (so I have him to thank for my redneck flaw) and he probably goes to a couple races a year so I was really excited to take him to CMS and give him more of a VIP experience (I had tickets for the Sprint Box). We took a tour of the pits and garage area, David Ragan came to hang out in the box for a few minutes before the race, and enjoyed the race from the start-finish line. The 600 is the longest race of the season so we had plenty of time to talk and hang out which I really enjoyed. We talked about everything and I realized how much time Dad has taken to get to know information about my illnesses (he has already found a gluten-free pizza place in Orlando for our trip in September!). It was just a really cool time and I know a memory that I will cherish for life!

2. Abby knows how to speak whale.

Abby’s love for Finding Nemo is no big secret. I seriously think she could watch that movie every day and not get tired of it. The Toy Story movies (especially #3) are gaining in popularity but this one still remains her favorite. She laughs and giggles and yells “Nemo! Nemo!” But last night for the first time, I heard her speak whale. I had to rewind the scene just to hear her do it again. It was one of the funniest things I have ever seen and heard (so of course I had to replay the scene when Hubs walked in so he could hear it too). I just wish that I had had my Flip handy!

3. I’m reconsidering surgery.

My doctor isn’t scalpel-happy and neither am I. I’ve met some ladies with endo whose doctors would perform surgery every 6 months if they agreed to it but my doctor isn’t one of them (thank goodness!). Its been six months since my endo issues have returned full force and we’ve sought out every alternative treatment we can think of plus getting a second opinion. The problem is that the pain is not getting any better. Honestly I’ve noticed a decline in what I consider my quality of life. I get fatigued easier. The pelvic pressure is almost constant. My GI system is hating me (and my EGD cleared Celiac of being the culprit). I never thought I would bring up the topic of having another lap again but I think it will be on the list of questions for my July 5th appointment.

4. I may be NCIS obsessed.

My husband would not be surprised by this at all. He thinks I’m nuts but I just really love the show. It is ever-evolving and honestly there is so much crap on television these days that I would much rather watch reruns over and over than subject myself to some of the reality trash that has taken over cable. For Mother’s Day, Hubs got me 3 seasons on DVD (I had already had one from Christmas two years ago). Last week I won an Amazon giftcard so I was able to complete my collection (which even included pre-ordering season 8!) which I am very excited about. Hubs and I were discussing lesson #3 above last night and I was joking stating that if I were to have surgery again I would just have a NCIS marathon during recovery and watch from start to finish so I started doing the math. Over 8 seasons (24 episodes per season) there is 192 episodes. With every episode roughly an hour (I know…no commercials..but to make the math easier), if you watched 12 episodes a day, it would take you 16 days to watch all 8 seasons. That is a lot of Gibbs but Gibbs does a body good – don’t you think?

5. I really missed cheese dip from Mexican restaurants.

Our family loves Mexican food, even Abby, so when I was diagnosed with Celiac, I was devastated to give up eating at traditional Mexican restaurants (cross-contamination central even if they do use corn shells!). Hubs will take Abby from time to time to get a fix but most of the time we just make it at home. Earlier this week, I was resting so they went out to dinner and it dawned on me to have Hubs just bring me home the cheese dip and I could use the GF chips I had at home. O-M-G. I missed that stuff. Its like crack. So good! Why did it take me so long to think of this?

These were my ah-ha moments for the week – what are yours?

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9 comments on “5 Things I’ve Learned This Week About My Life With Chronic Illness

  1. mamie says:

    I remember the first time katie spoke whale, so cute that abby does it too.
    This week I learned that bojangles biscuits + crohns = bad idea, i don’t know why i keep eating them.

    Reply
    • Jamee says:

      Oh Bojangles! There are some days I would give my right arm for a boberry biscuit but then I remember what gluten contamination feels like!

      Reply
  2. C.C. Almon - my journey as a Christ follower, wife, mamma, & fibromyalgia fighter says:

    I <3 NCIS too! Do you watch the new one set in LA? I was hoping to see a picture of your Bert that you got.

    We love Nemo as well. I sent you a Twitter about our talking whale. I don't know if you saw it or not.

    Reply
    • Jamee says:

      I did see your tweet right before I shut my phone off! We watch the LA one too! How can you not watch Chris O’Donnell and LL Cool J??? 🙂

      Reply
  3. Alissa says:

    My little dude speaks whale too. Maybe we should get them together and they can chat whale.

    Reply
  4. Petra says:

    Heh welcome to the NCIS obsessed club!

    cheers
    Petra

    Reply
  5. I strongly recommend NCIS as being good for whatever ails a body. 😀
    Ducky’s cute, Tony’s cute, McGeek is not bad and Leroy Jethro? Oh, baby, oh, baby!

    Reply
  6. Anne Galivan says:

    Two things:

    1) I’m glad you had some time to enjoy your dad. Mine died almost three years ago and we were very close. I miss him so much. But I’ve also had many real tragedies in my life including the death of my brother in ’97 (he was killed by a drunk driver) and the death of my 19-year old niece in ’07 (she was the passenger in a truck her friend was driving recklessly and died at the scene). I miss them ALL so much.

    2) I recommend you check out the show “Burn Notice.” It is awesomeness. I loved NCIS for quite awhile but there is no show that quite does it for me (and my sons) like “Burn Notice.” We already have seasons 1-3 and I just pre-ordered season 4 (it comes out on Tuesday).

    Reply
  7. […] have done so many times over the years). I wrote before about the trip my dad and I took to the Coca-Cola 600 last year and how much it meant to spend time one-on-one just the two of us. I share the same bond […]

    Reply

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