.30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Gastroparesis, Pelvic Floor Dysnergia, and Colonic Inertia 2. I was diagnosed with it in the year: 2013, 2014, 2015 respectively 3. But I had symptoms since: Non-stop symptoms and issues have continued since Feb 17, 2014. 4. The biggest adjustment I’ve had to make is: Learning to depend on a feeding tube for nutrition. It can be very difficult grocery shopping, cooking, sitting at the table with family, accompanying family to a restaurant, or even attending celebrations sometimes as everything revolves around food. Luckily, most of the time I don't have much appetite or have no interest in food. But once in awhile, I crave "real" food, usually I am strong enough to not. But when I do, I pay the painful consequences. 5. Most people assume: I am healthy. Prior to becoming sick, I was obese. However, I was healthier and much more active than I am today. Yes, I may "LOOK" better, but I feel so awful day after day. 6. The hardest part about mornings are: Getting out of the bed to face another day of pain and nausea. Sometimes, I just want to keep sleeping to avoid the pain and nausea that lays ahead. But most of all, I hate the guilt of disappointing my kids when they see another rough day written on my face. 7. My favorite medical TV show is: House - Yes, I am aware that this is an old medical show :) However, the majority of the time they could figure out how to help their patients, even with their unusual and complex illnesses. Maybe Dr. House and his team could find better treatment options and a cure for Gastroparesis? 8. A gadget I couldn’t live without is: My telephone (keeps me connected to others online) & my heating pad. My cellphone is essential to my well being. Listening to music in order to refresh my mentality and/or relax and connecting with online friends that truly understand Gastroparesis, providing support for others in our support group, and advocating are all possible with my phone. 9. The hardest part about nights are: Trying to stay up until at least 9:00 with my family, but many times give up around 8 pm. 10. Each day I take __ medicines. (No comments, please) 10 - 12 different medicines (No narcotics/opoids. They would only make my condition worse.) 11. Regarding alternative treatments I: Have tried physical therapy with biofeedback. Unfortunately we had no improvement or success. In fact, after almost a year of physical therapy, my therapists released me as they don't know of anything else they can do or even try to help me. Considering acupuncture and other alternative treatments. 12. If I had to choose between an invisible illness or visible I would choose: Invisible - I may be aggravated when people don't understand because they don't "see" or understand my illness, yet can at least seem normal to others. 13. Regarding working and career: I LOVE teaching. My entire life I dreamed of becoming a teacher. That dream became a reality as I taught elementary students for 15 years. Due to my health, I have been on medical leave for almost 1 year though hope to return teaching again. 14. People would be surprised to know: That I have not eaten a meal since Feb 17, 2013 and haven't driven since Oct. 27, 2014 due to uncontrolled and debilitating symptoms that can appear without warning. (I bought a new car Oct. 25th, which I absolutely LOVE, but have only been able to drive it the weekend I purchased it. Since then, I have been a passenger. 15. The hardest thing to accept about my new reality has been: I'm unable to be as active as I would like to be as a mother. I miss family vacations, camping, playing sports outside, etc. with my kids. 16. Something I never thought I could do with my illness that I did was: No answer. I haven't run into that experience yet. 17. The commercials about my illness: Are non-existent as the majority of the public and even many medical providers are not aware Gastroparesis. Pelvic Floor Dysnergia and Colonic Inertia are more common in the medical field but still not widely known by the public population. 18. Something I really miss doing since I was diagnosed is: I miss "living" an active life. I miss being able to eat something without pain, nausea, or vomiting as a consequence. 19. It was really hard to have to give up: Driving and teaching. I'm praying that my condition will improve, better treatments will become available, and that I can regain both of these activities again. Handing over my worries and fate to GOD, was difficult, but so very rewarding and worthwhile. 20. A new hobby I have taken up since my diagnosis is: Advocating to help bring forth awareness, blogging, and participating in online support groups. 21. If I could have one day of feeling normal again I would: Attend a Nascar or other sporting event with my family, eat a "real" meal, and camp out. 22. My illness has taught me: To take NOTHING for granted. By sharing my story, I can help others know that they are not alone. Friendships and relationships are to be valued. People truly show their true colors when you are chronically ill. 23. Want to know a secret? One thing people say that gets under my skin is: "But you look good!" 24. But I love it when people: Compliment me on my kids, my courage, and even let me know that I am still making a difference and helping others just in a different way than I had envisioned. 25. My favorite mottos, scripture, quotes that gets me through tough times is: God's love never fails! God is in control! So far I have a 100% success rate at surviving rough times. And that's pretty stellar. God has guided me to some amazing friends & provided me with a wonderful family to travel this journey with. God has a beautiful plan ahead of us. We don't have to understand or question the when's, how's, or why's. We just need to hold on to our faith and trust in HIM. 26. When someone is diagnosed I’d like to tell them: You are not alone. You are never alone. If you ever need someone to vent to (good or bad), I'm just a message away. Never fear to ask questions & when you are comfortable, share your story with others. 27. Something that has surprised me about living with an illness is: The amount of friends I've met as a result of the illness, the quality of love from my family, and the inner peace & strength I have within myself. 28. The nicest thing someone did for me when I wasn’t feeling well was: Sending a special care package of fun surprises and smiles filled with love to my kids. 29. I’m involved with Invisible Illness Week because: I know there are so many that suffer with a variety of illnesses, some are visible, some are not. Awareness needs to be brought forth so people living with various illnesses know that they are NOT ALONE! Together we can help each other. We should all, sick or not, reach out to help one another and not judge or make assumptions based on what we "see". 30. The fact that you read this list makes me feel: Thankful, appreciated, hopeful, and valued.
2 Comments
I have been checking out all of the posts linked up for IIAW and I am so glad I found your blog! I also have gastroparesis (along with a host of other issues) and it has begun to have a bigger and bigger impact on my daily life. I have had seven abdominal surgeries and am full of adhesions. I can no longer eat without pain or nausea and at this point, we are coming up short on options. I spent almost a full week in the hospital recently because I couldn't hold anything down but now that I can keep down at least liquids, I feel like I'm in a holding pattern. At what point did your doctors decide a feeding tube was the way to go? I am continuing to drop a lot of weight and that mixed with everything else is making everyday life a major challenge.
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Trisha
9/30/2015 08:01:39 am
Hi, Jamee! Thank you so much for taking the time to read and comment on my post. I am so sorry that you are traveling the Gastroparesis health journey, but glad you found me. (I hope you take time to read some of my other blogs as well.) I am fortunate that my drs decided to place my feeding tube relatively early. I was not getting anywhere close to an adequate amount of nutrient in orally and was staying dehydrated when they made the decision. I was completely lost, I was just learning about my diagnosis (which was difficult because of the lack of information available) and knew absolutely NOTHING about feeding tubes. Unfortunately, I hear of people that are struggling to convince their doctors to place a feeding tube. Personally, if you think you need one, asks, be persistent if needed. It is still possible to eat/drink (based on what you can handle) while you have a tube and they can be removed your oral intake increases. Best of luck!
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Trisha BundyA proud mother, educator, Gastroparesis & GI Motility Disorder Advocate, Like my content? Want to thank me with a small token of appreciation? https://www.amazon.com/hz/wishlist/ls/1LH7R639ORBML?ref_=wl_share
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