IT’S OKAY NOT TO BE OKAY

In this guest post by writer and runner Samantha H Smith, we hear about loss – sadly, an ongoing problem in the gastroparesis community. Samantha has dealt with plenty of it, but she finds strength somehow.

“It’s Okay Not To Be Okay” – by Samantha Smith 05/15/17

I’ve been sitting here trying to write about loss for a few days now. Some days, my mind just doesn’t want to form words, or even try to comprehend all the emotions I’m feeling.

Recently, the GP community lost a sister; a brave and beautiful soul who meant the world to many people. I myself considered her a good friend; someone I was truly lucky enough to know and love. She was the kind of person who no matter what she had going on, she made time for you.

When I was at my sickest, and TPN became a reality, Dalia was right there, offering hope, advice and comfort. I’d always considered her a friend, but it was during that time that we grew close.

Everyone will experience loss at one time or another. Someone in your life may die. You may lose a job, a friendship, or a significant other. Loss is difficult, but loss is normal. I want you to know, it’s OKAY to not be okay. It’s okay to have bad days. Some days, the pain will be less, and you may be fine. Some days, the pain may be so overwhelming you can’t get out of bed. I’ve learned to be okay with myself during both days.

Just remember, it won’t last forever. Things will get better. You WILL be okay.

 


Samantha is 27, from upstate NY. She lives with a few chronic illnesses, one being Gastroparesis. She has a Bachelors degree in forensic psychology that she hopes to have a career in someday. Writing and running are both passions of hers. You can find more of her writing at her blog https://hustleandheart2016.wordpress.com/ .

Image credit: www.snappygoat.com

 

Skateboarding my way to health

By Rita Griffin

Skateboarding My Way to Health: Johnathan’s Journey with GP

 

Barbados, a Caribbean paradise that invites travelers to its magnificent beaches, is home to a courageous thirteen year-old boy, who is battling gastroparesis. His story is an inspirational and uplifting one, of how a young person can face difficult challenges with grace and determination.

Gastroparesis, a rare under-served disease often associated with young women, has no respect of persons. According to digestivedistress.com, “The National Institute of Health in the United States has declared that 5 million Americans are afflicted.” Of this staggering number one-third are idiopathic, meaning that there is no clearly identifiable cause for the illness. Even though the majority of sufferers are female, many males are being diagnosed from young to old.

Johnathan began his journey with GP in 2014 when he was only ten years old. He started experiencing constant vomiting and nausea. He was taken to five doctors in Barbados, but they could not figure out what was wrong. Johnathan stated, “One doctor thought it was constipation and gave me a laxative, luckily my family stopped giving it to me and took me to another doctor.”

He also suffered with acid reflux, and this added to the distress of vomiting and nausea. So, his parents brought him to the United States to the Arnold Palmer Hospital, where numerous tests were done. Johnathan explains, “After a 24 hour motility test at the hospital, the specialist indicated that the antrum of my stomach had flat lined, and that I had no activity. It was severe gastroparesis and no medicine had an effect on me.”

Despite hearing such devastating news, Johnathan’s parents helped him learn how to cope with his sickness. They were his mental support with care and understanding. Besides, he was only ten years old when he started getting sick, and his future had not been mapped out.  When he heard this devastating news, Johnathan was just a young boy who wanted to skateboard and go to school.

He was in the top of his class. Due to his challenges with GP, he missed two years of school. Yet, he never gave up! He was determined to achieve and to live, a determination which is crucial to overcoming any obstacle in life, especially a debilitating illness.

He was formally diagnosed in February 2014. Though he knew the cause of his vomiting and nausea, he got progressively worse. He was taking Reglan and it worked for only three months. He started vomiting again with bad stomach pains, causing him to lose weight. “I spent a month in hospital in October 2014 and they put a GJ tube in me to feed, as nothing would stay down and I only weighed 54 pounds.”

map-of-intestines

A GJ tube or Gastro-Jejunal is often used in severe GP patients. It is placed in the stomach and attached to the jejunal portion of the small intestine. From November 2014 to last September (2015), Johnathan could not eat, and was fed through the GJ tube for 18 hours a day. Courageously, he says, “ I got accustomed to walking with my milk either in a bag or walked around pulling my IV feeding pole.” Johnathan did not allow his circumstances to dictate his life. He amazingly endured the inconveniences of the feeding tube, and persisted with a positive attitude of getting well.

Last September (2015), he was fitted with a Gastric Pacemaker or Stimulator, and was taken off the GJ tube. This electrical device provides mild electrical stimulation to the lower stomach nerves. According to the California Pacific Medical Center, this device is placed below the rib cage in the abdomen, and mild electrical pulses are transmitted through a neurostimulator encouraging the stomach to contract, and to help relieve nausea and vomiting. This procedure worked for a month before Johnathan’s symptoms returned. He had to travel from Barbados to the hospital in the states to have the stimulator adjusted. The device would work for a short while and then the symptoms of vomiting would return.

The pacemaker was not having a lasting effect on Johnathan’s gastroparesis, so he discontinued its use and went back on the feeding tube. This therapy is reversible, and can be turned off at any time by the specialist. During this time, he had to go back to the hospital and it was discovered during several tests that the leads for the pacemaker were placed too low on the stomach, and needed to be higher to have a better effect. The changes were performed in April; however, he developed an infection so in May, they removed the pacemaker and sanitized the area. The pacemaker was replaced. Johnathan says, “I have been feeling better since May.” He was able to return to school after missing two years.

The pacemaker is working greatly according to Johnathan’s father. The feeding tube is also used just for insurance. Johnathan is not taking any medication other than an antacid once and a while, and Zofran for occasional nausea. “I am able to eat breakfast, lunch, a snack, and dinner. Some days I do not feel hungry at meal time. I also feel nausea sometimes, but much less than before.” His enthusiasm and passion for skateboarding is his therapy. Now, he is able to skateboard for 2-3 hours a day. He has also resumed his schoolwork and is doing quite well.

His favorite movie is Miracles from Heaven, about a young girl suffering from a rare digestive disorder who finds herself miraculously cured after surviving a terrible accident. The movie was very similar to what Johnathan experienced with GP, except as he points out, “My miracle came in the form of a pacemaker.”

Johnathan’s hope and courage is an inspiration for how we can overcome the challenges life presents. His determination is summed up in these words of encouragement: “Always believe in the person suffering with GP. It is frustrating when a doctor tells you that it may be in your head, when they do not know what is wrong. Research is the key towards understanding the illness and searching for a solution. Always keep fighting and remain positive. Life will get better with the right treatment. Never give up!”

Related sources used:

www.cpmc.org (California Pacific Medical Center)

www.digestivedistress.com

www.feedingtubeawareness.org

Rita Griffin is a Georgia native. She has a Bachelor of Science degree in Psychology and worked for the Georgia Department of Transportation for 15 years. She loves studying the Bible, reading, traveling, writing, and meeting people. Rita has published 4 books of poetry. She is married with two sons. Rita is a volunteer writer for G-PACT.

Making 2016 All About YOU By Christina Tinkler

We’ve all been there before…. 2015 is rapidly coming to an end and you are asking yourself, “What resolutions did I make in January that I successfully achieved?”. Time seems to go faster and faster as the years go by. Before we know it, March is already here. Soon it’s time for fireworks and then we come to a screeching halt when the last 6 weeks of the year rolls around and many are thinking “Where did 2015 go?” Many of us can relate and we find ourselves coming up with new goals, hopes, and dreams for the next year. Unfortunately, when you have a chronic illness, you don’t get to pick when you have a flare up or who or what it affects. But don’t worry, that’s the beauty of New Year’s Resolutions…. It’s an opportunity to wipe the slate clean and move forward without regret. I think especially for those with chronic illness, we may often feel like “we can’t have it all” which is simply not true. I often tell myself I can have all the hopes and dreams I want……. but I may not be able to have them all at the same time!

There are a variety of areas one might want to improve upon but I think one of the most important is getting adequate sleep. We all know when our sleep patterns are disrupted that definitely has a big impact on our day-to-day lives. According to Raymonde Jean, M.D., the Director of Sleep Medicine and Associate Director of Critical Care at St. Luke’s Hospital in New York, “If you sleep better, you can certainly live better. It’s pretty clear”. It’s hard enough having a chronic illness and feeling you are constantly running on “empty”. You owe it to yourself to recharge and get your gas tanks full again. If you are having trouble getting a restful night sleep, it might be worth trying some relaxation techniques before bed such as a warm bath, or reading a no brainer book. Maybe you are more into yoga or Pilates— perhaps doing a calming activity like that before you hit the pillow will pay off. A common complaint from those of us who suffer from digestive issues is GERD- gastroesophageal reflux. There is a direct correlation between acid reflux, diet, and sleep. According to NSF’s 2001 Sleep In America Poll, adults in America who experience nighttime heartburn are more likely to report having symptoms of sleep problems/ disorders such as insomnia, sleep apnea, daytime sleepiness and restless legs syndrome than those who don’t have nighttime heartburn (https://sleepfoundation.org/sleep-topics/diet-exercise-and-sleep).

Another important component to good health is making sure you are hydrated. The effects of dehydration can range from mild to severe. According to the NIH, “Mild levels of dehydration can produce disruptions in mood and cognitive functioning.” This can range from very minor thing like affecting your concentration, short-term memory, or even arithmetic ability to more severe things like dementia or delirium in the elderly. Dehydration can certainly affect the digestive tract too. These effects can range from causing constipation to delaying gastric emptying. Did you know that it only takes a water loss of between 1 and 2 percent before your body will send a signal that says you are thirsty? This is according to an article entitled “Studies on Hydration Suggest Dehydrated Drivers May Pose Hazard on the Road and Majority of Children Don’t Drink Enough Water”. Dehydration has also been linked to other illnesses like high blood pressure. In general, you should aim to drink about ½ your body weight in ounces at minimum to prevent dehydration. For example, if you weigh 200 pounds, you should be drinking at least 100 ounces just to maintain adequate hydration.

Finally, a good, nutritious diet can’t hurt. So, what exactly is a healthy diet? Of course everyone has different preferences and requirements they should be meeting in their diet but in general, according to the Dietary Guidelines for Americas 2010 (http://www.cdc.gov/healthyweight/healthy_eating), a healthy plan*:

• Emphasizes fruits, vegetables, whole grains, and fat-free or low-fat milk and milk products
• Includes lean meats, poultry, fish, beans, eggs, and nuts
• Is low in saturated fats, trans fats, cholesterol, salt (sodium), and added sugars
• Stays within your daily calorie needs

Incorporating a variety of foods in one’s diet is always important. Every food has different health benefits so if you are sticking to only one food group or sticking to your staples, try to branch out and see how much color you can incorporate on your plate. Who knows you might just find a few new favorite foods and it can’t hurt to be healthy at the same time!

In conclusion, just because you haven’t been as healthy or maybe you fell off the wagon this year, that doesn’t mean that the change can’t start now. Dust yourself off and ring in this New Year with your health as a top priority. Your health future can be as bright as you make it by just making a few changes. Are you going to let 2016 be the year that you make the change or is December 2016 going to look just like December 2015? Start this next year off on the right foot and make this year about YOU for a change! Maybe you start by making one change at a time each month or one every 3 months. As long as you are moving forward on this journey that’s all that matters. Here’s to a happy and healthy lifestyle full of wonderful changes, beautiful memories, and the best that life has to offer.

*We realize that those with digestive tract issues have trouble maintaining a healthy diet, but perhaps you can follow some of these recommendations