I created this video to help spread awareness for Gastroparesis, Colonic Inertia, and other Invisible Illnesses while also attempting to spread a message of hope to all who watch. Thank you for taking the time to watch the video.
(Below the video, I attached the written blog.)
Hi, my name is Trisha. I hate seeing and hearing myself on video, but after hearing of yet another death in our Gastroparesis Support Group I had to speak out. She was young vibrant and only 24 years old, searching for help and answers. I can’t sit back in silence and continue to watch person after person fade away. So today, I’m mustering up the courage to step out of my comfort zone and speak up for all of my friends & family, especially those that are living or know someone that is living with an invisible illness.
Having an invisible illness has impacted my life drastically. Thankfully, God has sent blessings along to help make the journey survivable.
Seeing me, you most likely do not realize that I am fighting invisible illnesses daily, mostly of which relate to a broken malfunctioning digestive system. The main 2 culprits are Gastroparesis and Colonic Inertia, which basically means my stomach and colon (large intestine) do not function. I am unable to eat normally, because food would just sit and rot in my stomach creating nausea, pain, bloating, and sometimes vomiting. Therefore, I have to depend on my GJ feeding tube for nutrition. I have a pump, that when connected pumps liquid formula directly to my small intestine, bypassing my stomach. This worked well for about a year and then I began having issues with tolerating the formula. As a result, I completed a Sitz Marker study which showed that my large intestine (colon) is not functioning. This very well could be the reason that I have been having problems with receiving my formula feeds. Currently, I’m successfully able to handle and function on about ½ can of formula a day at a rate of 30ml per hour. On “good” days I can supplement with a little bit of liquid or popsicles orally. That means that my TOTAL caloric intake is between 100 - 500 calories per day. As you can imagine, lack of energy and dehydration can be an additional burden on my already fatigued and often painful, nauseated body. Just consider the last time you had the flu or food poisoning and were unable to eat for a day or two. Now imagine living that way for years! That’s what many of my friends living with Gastroparesis and I have been enduring day after day.
For those that knew me before I became sick (Feb 2013), I may “look” healthier today because I have lost quite a bit of weight. In the past 2 ½ years I have lost approx 170-180 pounds, and am still losing. But this is not a positive thing. I know people mean well when they try to compliment me by saying that they can notice how much weight I’ve lost and that I look good. But what they don’t “see”, what they don’t understand or realize, is the “invisible” torture my spirit and body has been through. I may “look” healthier, yet the weight loss is a side effect of me not being able to eat and some days even drink. My last true meal was Feb 17, 2013. I was actually healthier, more active, and living a pretty awesome life when I was obese. I was traveling, practicing ball outside with my kids, teaching, etc. Now, I stay fatigued, nauseaous, and in pain which leads to an almost non-existent non-active life at times. Living with a chronic illness, in my case an invisible illness, can cause you to feel isolated. There have been many days when I feel like I am just here, alive but not living. Days when I feel like I am just witnessing and watching life pass me by. Days when I’m upset or feel guilty because I have to cancel or miss out on special occasions, events, or activities. There have been times when I literally feared that I would not make it, feared that my life was ending, feared the heartbreak that my children & other family members might have to face. There have also been times that I have been terrified about my friends that were struggling or on the verge of death, or in some cases contemplating suicide because they could not find a doctor to understand them or be able to help them.
What amazes me, is that there are so many living life like this as a result of Gastroparesis and/or Colonic Inertia. More than 5 million. Yet these illnesses are not known by the general public and even more surprisingly they are under recognized and misunderstood by so many medical providers. It isn’t uncommon to have doctors or nurses that are cold to us, turn their back, or even dismiss our pain. I hear about it everyday in our online support groups. Luckily, for the most part (yes I’ve had a few bad experiences) but for the most part the medical providers I’ve depended on have been empathetic and concerned. Unfortunately, though, they don’t always have the answers and sometimes don’t know about the conditions or how to treat them to help me feel better. One of the most discouraging things to hear from a medical provider is “I don’t know how to help you, we are running out of options, or as much as I want to help you - I don’t think there is anything else I can do.” I know how awful this feels, as I am hearing it more and more often. Thankfully, my GI team hasn’t given up on me, yet.
Some of you may suggests that our GP Community reach out to the media for help. Guess what? We have, and we have been turned away or ignored because they think our stories are “too gross” or “uninteresting” to their audience. I have many friends that I’ve met online that are literally STARVING TO DEATH from Gastroparesis. The disease may be invisible, but we are NOT. We WILL continue fighting to be heard. We will band together and continue to help and support each other. Individually we may be sick, weak, and frail but together we stand strong and mighty.
All this being said, I want to make it clear that having an illness, whether it’s invisible like mine or not, will have some silver linings. You just have to open your eyes and heart to recognize the blessings that surround you. God doesn’t give us more than we can handle, it’s true, even though at times we may feel pushed to the absolute max. God is ALWAYS with us. God is amazing! In our storms, HE provides us with umbrellas, rainbows, and support if we just TRUST him. It’s so easy to focus on the negative, but that is not want God wants from us. He wants us to hand our worries, fears, and pain over to him. He wants to hold us, carry us, and comfort us. He wants us to love and assist each other, without judgement.
I’ve met some of the strongest, most beautiful, and kindhearted friends from all around the world in the online support and advocacy groups that I participate in. I have learned so much about myself during this difficult health journey. I would like to share a few things I’ve learned, that may help you on your journey as well.
I’m going to leave you now with 3 words that have become very important to me and should be remembered by all.
Believe that God’s in control, you are NEVER alone, and that better days are ahead.
Have the courage to step out of your comfort zone to help yourself and others.
Find the strength that you have inside of you. It’s there, GOD ensures you have all the strength you need if you trust HIM. Strength can also be gained from your support team, which for me includes my exceptional family and friends.
Thank you for watching my video.
.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
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
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
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.
I'm becoming an Empowered Patient:
Willing to learn and research my personal health conditions.
Informed, inquisitive, realistic, and eager to LIVE.
Carefully considering what I read, discover, and share.
Participating in support groups to help one another and advocate.
Sharing information and treatment ideas with patients and medical providers across the globe.
Monitoring and managing my diagnostic tests results and lab values.
I'm becoming an Empowered Patient:
Creating a Trust-worthy medical TEAM that works WITH me to improve my quality of life.
Expecting open discussions and shared decision making for treatments.
Finding medical providers that are honest & dedicated to learn more about unfamiliar conditions, medicines, side effects, and impact on my life.
Requiring my team to LISTEN to my concerns, ANSWER my questions, and HELP DEVELOP a positive treatment plan.
I'm becoming an Empowered Patient:
I HAVE to!
No One knows my body better than myself.
No one can fight this battle for me.
If I don't fight for my health and my quality of life, who will?
I can't sit back and be "just" a patient anymore.
I am empowering myself and educating others;
determined to find better health and regain my sense of living.
I was diagnosed with Gastroparesis in April 2013 after being unable to eat anything or drink an adequate amount since that Feb. In May 2013 I became dependent on a GJ feeding tube for nutrition. It helped for a while, but have been struggling with my tube feeds for the past year. In Oct 2014 I was hospitalized and diagnosed with Pelvic Floor Dysnergia, Dec 2014 Gallbladder surgery for gallstones and inflammation. During the summer of 2015, I found that my lower esophagus sphincter was not relaxing as a result of an esophageal manometry test, so had the esophagus stretched. Have also been suffering from chronic constipation, lightheaded/dizziness, continued abdominal pain, continuous nausea, and dehydration issues. Just found out this month, after asking for the Sitz Marker Study, that I have colonic inertia. So basically, my digestive system sucks.
BUT I'm determined to get my life and some sense of normalcy back by being an EMPOWERED PATIENT.
How can I be so positive?
How can I continue to smile?
When truth is I'm in constant pain,
With lack of nutrition for quite a while.
The only way I know how to respond,
the only thing I know to say----
Is I have a great support team and
have God beside me each and every day.
You see, while I am hurting,
sad, weak, and have tears rolling down my cheek.
I have online friends that build me up
and a family that consoles and guides me week after week.
It would be so easy to roll up in a ball
or seclude myself in a room all alone.
Giving up my fight would not be difficult at all
BUT giving up isn't an option - I'm never fighting this alone.
When I am at my weakest points
or struggling with the severest of pain.
God, family, and friends always pull me through.
That's when I realize ALL of God's blessings that I've gained.
© 2015 Trisha Bundy ALL RIGHTS RESERVED
A proud mother, educator, Gastroparesis & GI Motility Disorder Advocate,
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