chronic illnessfaith

Jamee’s Rules About Life With Chronic Illness

Life with Chronic Illness

Just as Gibbs has his rules for life, over the last 7+ years of living with chronic illness, I have come up with some rules of my own. You may want to memorize these but – don’t worry – there won’t be any head slaps involved if you miss one. Here are Jamee’s rules 1-10 about life with chronic illness:

  1. There is some truth to the old adage “What doesn’t kill you will make you stronger”  (even though I think that things that in fact may be killing us can still make us stronger).  After my initial diagnosis I never thought that I would ever be able to be strong again but the past 7 years have taught me that I am stronger now than I ever was.
  2. Sometimes you need to be like Gibbs and go with your gut.  If you feel like something is not right, it probably isn’t and you need to learn to be your own advocate.  Ask questions and push for answers.  While you cannot trust everything you read on the internet, it is important to research and educate yourself.
  3. Sometimes laughter is the best medicine.  When I’m feeling blue, popping Finding Nemo can do wonders for my spirit, especially now that I can share it with my daughter.  Dorie is a great doctor 🙂
  4. Doctors are not always right and there is nothing wrong with asking for a second opinion.  I’m not sure my Celiac would have ever been caught had I not sought a second opinion.
  5. Buy cute pajamas to wear after surgery.  It gives you a little bit of pampering when you need it most.  If you know you’re going to be donning a hospital gown for a couple days, buy cute socks.  Believe me, after 4 surgeries, it goes a long way!
  6. Finding a support team/group is absolutely essential.  I do not know if I would have ended up where I am today with the support of others.  After my endometriosis diagnosis I was lucky to find GirlTalk (an online support group through the Endo Research Center) that I became a member of and now serve as the Program Director.  During our infertility treatments, I found a wonderful group of ladies that provided support and encouragement.  It doesn’t matter if you find a support group that meets in person or online.  Knowing that you are not alone gives you strength to keep fighting the fight.
  7. Cereal can be a perfectly acceptable meal for breakfast, lunch, and dinner.
  8. Your faith gets challenged.  While I never doubted God and His grace and love, I had my share of questions.  And it was through the wrestling and searching for answers that I learned more about God than I ever did in seminary.  Not that I have all of the answers to my questions.  In fact I may have more questions know than ever but I know who I serve and I know that I can trust His character and that that is enough for me.
  9. Find an outlet whether it is blogging, painting, or songwriting.  Healing comes when we open ourselves up and acknowledge our hurts, hopes, and dreams.  When I began this blog in 2007, I would have never guessed how redemptive it would become to my faith and health.
  10. You are more than your disease/diagnosis.  It is important to never ever lose sight of that.  I am determined to let the world know that while yes I may have multiple illnesses, I am a person and a warrior and I will not be overcome.

This list is just the beginning. I doubt I will be able to come up with over 50 like Gibbs but I am pretty sure there will be more added to the list in the future!

Rules About Life With Chronic Illness

 

Do you have any suggestions?

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39 comments on “Jamee’s Rules About Life With Chronic Illness

  1. Jamie says:

    Stopping by from SITS. Great post, Jamee. Lots of good advice and good ideas. Hitting thumbs up on this one.

    Reply
  2. Calie at Brocoli Cupcake says:

    Love this post. Such positive ideas for those struggling with chronic illness or illness in general. I’m not sure if you can call anxiety a chronic illness, but that’s my struggle and a lot of your tips apply to my experience. Thanks for sharing!

    Reply
  3. Thanks for stopping by my site. I like this post — I have endo too, and it is so tiresome how it never goes away. I completely agree about the pajamas — after I had my baby, wearing those helped boost my spirit. Crazy, huh? Love the design!! Very cute.

    Reply
  4. Kelley says:

    I don’t know much about this disease, so I appreciate you sharing this information with us! I work at a cancer hospital part-time. I think you shared a lot of wonderful tips that I can pass on to others. Thanks!

    Reply
    • Jamee says:

      God bless you and your work at a cancer hospital! That takes a special calling! Thanks for visiting!

      Reply
  5. CMcKane says:

    Great list I’ll be sharing this with many who suffer from chronic illness. I love the idea of Dorie as a way to make you smile. For years I’d put on The Pebble and the Penguin whenever I got the stomach flu.

    @Calie I would think it could especially if you’ve been dealing with it for a long time.

    I think #9 & #10 are really good points. Visiting from #31DBBB!

    Reply
  6. Diana Lee says:

    This is lovely and so inspiring. Even though our lives don’t look the way we imagined they are beautiful and full.

    Reply
  7. Maureen says:

    What an inspiring list and most of all, what a strong woman you are! Thank you for sharing this.

    Reply
  8. Lana says:

    Good lessons. The first one, none of us realizes how strong we really are until we are tested and our faith is challenged. I am an NCIS fan too and I often remember the Gibbs “go with your gut” rule. My other Gibb’s rules I follow is “Don’t believe what you’re told. Double check.”

    Laughter, always the best kind of therapy. Doctors not always being right? 10 tens of misdiagnosis confirmed that over and over for me. I can relate to the rest of them as well.

    Many of these are from my own lists of lessons. I would add appreciating the little things, focusing on the things I can control and letting go of the ones I cannot, letting go of the past and looking to the present and future, weakness is okay so long as you do not let it consume you, and living in the moment.

    Reply
  9. Gemma says:

    Sweet post, I always find that laughter is the best medicine 🙂
    Some really great empowering advice here, great job.

    Reply
  10. gnomeangel says:

    Great post! As someone who has had illness take a large swipe at her dreams I completely understand and agree with your post. I especially love the ‘buy nice pajamas’. 🙂

    Reply
  11. Mariah says:

    I love this list! My mom had a terminal illness so many of these connect to me. I also attended seminary {as did the hubby} and I agree completely with #8. I will have to tell my sis about your site because tomorrow will be her first day going gluten free after being diagnosed with Celiac. I am SO glad you came by my site today. This challenge is worth it just to meet ya girl!

    Reply
  12. TRR says:

    Great advice. Sweet, touching, and oh so real… You have a great attitude Jamee. Keep up the good work, SITSA!

    Reply
  13. Jane in Australia says:

    totally agree re the PJs.

    10 years ago I went for lavender and cream silky style.
    48 hours in ICU in hospital gowns meant I was desperate.
    I’m glad I planned ahead, and thankful for the friend who took me shopping
    and did all the fetch and carry for me.
    I’d just about forgotten, thanks for the great list.
    I’m on SITS now too.

    Reply
  14. Visiting from 31DBBB–great advice. I learned from being a caregiver for my mom that the doctors will never know the patient like I did and that effects the treatment. Evreyone must advocate for themselves with medical personnel.

    Reply
  15. ElizOF says:

    Girl, I love your blog and your attitude in the face of an incredibly challenging health concern. Thank you for sharing your post on the 31DBBB favorite list as I am impressed by your resilience.
    Your list of ten are nuggets for all of us to live by and I pray that you will continue to make headway in your health efforts. My closest friend in college has a brother with celiac and it has not been easy… I applaud your courage and send you love and light.
    Blessings,
    Elizabeth

    Reply
    • Jamee says:

      Thank you for your kind words and encouragement! Its comments like this that keep me going, especially when I’ve had a hard week like this week!

      Reply
  16. Leslie Limon says:

    I enjoyed reading your blog so much this morning, I had to come back for more. Being a chronic asthma sufferer, I can relate to each and every one of the points you made. Cute cow pajamas have done wonders for my self esteem. If I’m going to be stuck in bed or sitting on the couch for days at a time, I might as well feel like I look good.

    And I can’t even begin to tell you how close I feel to God. We talk all day long. I don’t blame Him for my illness. I don’t get mad. I do ask for healing, but I understand that He has a plan for me. I’m just waiting to see what it is.

    Thank you for sharing your life stories with us. 🙂

    Reply
  17. Peter says:

    I love your #3. Laughter can help us not only cope, but find joy.

    Reply
  18. I just found your blog and am now following you. I have read many of your posts and can relate to a lot of them.

    I struggle with systemic candida. I have probably had it for most of my life but I only learned about it 3 1/2 years ago.

    Good luck to you and healing your illness. Terry

    Reply
  19. Krista says:

    So many great points you made here. Thanks for sharing. I’m trying to learn as well from my chronic illness.

    Reply
  20. Lucinda says:

    Great post! I agree with everyone, especially laughter. It had gotten me through many a dark day.

    Reply
  21. Marie says:

    This is a copy of the response to your post that I left at BlogHer:

    I’m so sorry, Jaime, that you have experience with chronic illness. None of us deserve it.

    I think your tips are excellent ones. I have Multiple Sclerosis and have applied all of your suggestions at times.

    Having your own nice things to wear in the hospital makes a huge difference, that is always a good one (one I advised my expectant moms to do too when I was a childbirth educator; well for birth maybe not pretty but familiar and comfy. :)) People think they are not ‘allowed’ to wear their own things in the hospital, but that is not true. Whatever it takes to make you comfortable.

    I like to remind people that everyone experiences their illness in their own way, there is no right or wrong, only what is right for you and your family.

    I would just add a word about support groups. There is no one-size-fits-all. Not every group is for everyone. If you find a group is not a good fit for you, don’t be discouraged,keep looking. Check on line if you have to. Or start your own. 🙂

    My heart is with everyone who needs to read these messages.

    Marie

    Reply
    • Jamee says:

      I completely agree with you about support groups! There is definitely not just one way to do it! I tend to be a bit introverted so, while I think if I found the right in-person group I would feel comfortable, I have found a lot of support and encouragement through online groups and even through Twitter! Social media is definitely an awesome thing for us spoonies!

      Reply
  22. Heather says:

    Found you through BlogHer. I have Lupus, Fibro and Endo that I know of. This is a very good list, I try to keep a small bag of essentials always ready to go in case I have an unexpected hospital stay which can happen. I have an extra hairbrush, toothbrush, toothpaste, deodorant, shampoo and conditioner, hair ties, lotion (travel sizes) and a pair of good jammies, socks, and underwear. That way if my hubby or someone else has to grab it for me I at least know I have a head start. Oh and I keep an up to date list of meds with a list of doctors and their office numbers in there as well. Cause you talk 400 (exaggeration) of them it’s hard to remember what dose and all that jazz. The other thing that is a must if I am going to be in there more then one night is my own pillow. I hate the flat piece of well I don’t know what it is, but it is not a pillow. I had them fight me on it once and say that I couldn’t because of the pillow case, they couldn’t make sure it was clean. HA so I told them to give me a case of theirs and I would put it on my pillow while I was there.
    I understand your spiritual battle as well, you stated it well. I will be a follower from here on out. Thank you!

    Reply
  23. I am posting this on my website on Tuesday. The website is called DisabilityVoice

    Reply
  24. Jessica says:

    Hi, I found you on Chronic Babe Bloggers and have been exploring your blog. This post is real and inspiring. I am encouraged by the “outlet” you have found with this blog.

    Reply
    • Jamee says:

      I am so glad that you found me! You can find me on twitter too at @newkindofnormal if you tweet! Would love to chat with you!

      Reply
  25. It’s My Party Day! | A New Kind of Normal says:

    […] guessed that my would have ended up where it is today.  Chronic illness has taught me so many things over the last 7 years.  I have learned what it means to be a woman and learned that there is more […]

    Reply
  26. almostsinglemom says:

    I love this list. I may need to print it out

    Reply
  27. Liz says:

    Excellent list — I especially like your point on faith. I know my faith has been strengthened through my chronic illness. 🙂

    Reply
    • Jamee says:

      Thanks for visiting! I was just telling someone the other day that I have absolutely no idea how I would handle life with chronic illness without my faith. Some days its all I have. When I don’t have answers and when I feeling completely alone, I know in my heart that God is with me and that He has a plan and I just hold tight to that and it helps to get me through!

      Reply
  28. […] there are also featured blog posts throughout the week. I was honored enough to have my post 10 Things I’ve Learned From Chronic Illness featured during last year’s event. There is also a meme that is great to participate in […]

    Reply
  29. Lisamarie says:

    I love this blog and you have helped me so much don’t change a thing! http://job6-3.blogspot.com/2015/03/muscle-spasm.html

    Reply

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