Sunday, August 23, 2015

Gastroparesis: One Year Later

It always blows my mind how fast time goes by. One year ago, I heard the word "gastroparesis" for the first time, ever. What was this "paresis" word that my (amazing) gastroenterologist was talking about? At that point in time (last summer) I had already had my gallbladder out and was already diagnosed with SVT (heart condition), asthma, chronic headaches, chronic bile gastritis, visceral hypersensitivity, IBS, and FAPS. (chronic nausea/vomiting, bile reflux, and abdominal pain to go along with these issues)... but this whole "gastroparesis" thing was all new to me.

Gastroparesis is usually diagnosed through a gastric emptying scan. Last year was 2 years after I initially "got sick".. Dr. Levitzky finally decided that it was time for me to have my first gastric emptying scan (GES).. by then I had already been around the block with endoscopic procedures, HIDA scans, CT scans, MRI's, MRCP's, medication trials, surgeries, and other medical tests and trials. The GES was pretty disgusting. You basically eat a nuclear egg, bread with jelly, milk and water. Pictures of your stomach are taken throughout the test. At the end of the 4 hour test, the check to see how much food is still in your stomach. I ended up in the 5th percentile when I got the results for the test, which is pretty awful.

Since I got diagnosed with gastroparesis last summer, I have been diagnosed with pancreas divisum, sphincter of oddi dysfunction, chronic pancreatitis, chronic anemia and hypermobility syndrome. Since last summer, I've had many tests and procedures, three abdominal surgeries and three knee surgeries. It's been both physically and mentally exhausting. Each health issue comes with their own symptoms and most of the issues are being treated with high doses of a lot of medication. I'm now on 23 medications and have to take many pills/liquid doses every day and will have to be heavily medicated for the rest of my life. While all of my health issues have taken their toll on me, gastroparesis has absolutely been the toughest thing I've ever had to deal with.

Imagine having a never-ending stomach flu. Constant nausea, vomiting and dehydration. There are many symptoms of gastroparesis.. but I've been dealing with nausea, vomiting, chronic dehydration, weight gain, bloating, malnutrition, heartburn, low blood sugar, epigastric pain and feeling full after just a few bites of food/sips of water. I am on a diet that consists of mainly liquids, pureed food, low-fiber food, low-fat food and food that is easily digested. I drink a lot of Boost, Ensure Clear, Gatorade and stay away from anything with a skin, peel, seed and anything that is whole-grain and high in fiber or fat. I've also resorted to a lot of baby food. My favorite things to eat now are yogurts, Cheerios, different flavors of applesauce, white toast, scrambled egg whites, cooked veggies, mashed potatoes and peaches in syrup. To stay hydrated, I drink diluted Gatorade, water, Pedialyte and occasionally ginger ale if I am nauseous.

There aren't many medications to treat gastroparesis. I've been through all of the treatments, but the side effects were too risky, so I ended up stopping the medications. For now, I have a great pain management plan and a great anti-nausea plan. It's not perfect, but it is keeping me functioning (for the post part).. I actually laugh, because I can't imagine how people are on zero medications. The medications that I am on help improve my quality of life and truly keep me out of the hospital. My doctors have worked so hard to come up with the medication plan (23 medications total).. but to be honest, it's exhausting sometimes. I deal with a lot of negative side effects from the medications, but I know that the benefits of the medications outweigh the side effects. The biggest issue with the side effects have to do with my SVT diagnosis. A lot of my medications cause a fast heartbeat and mess with the QT heart intervals, but I am on medication to help with my high heart rates. My doctors keep an eye on my heart rate and I am able to check it at home to make sure that it's at a safe rate.

It may seem like I talk about my health a lot. Bingo! That is correct. I actually purposely speak about my heath a lot. Why?  .. because we need cures. We need to spread awareness. We need to let the world know what invisible illness is really like, so that people will be more understanding. If I had a dollar for every time someone told me that "I don't look sick" I would be rich. Did you know that 96% of illnesses are invisible? Yes, that's what I just said. That's why I make no apologies for talking about being sick. I will go to the ends of this earth to spread knowledge and awareness and to stand up for others who struggle with sickness like I do!

Back to the whole gastroparesis thing... A common misconception is that gastroparesis is rare.. it actually isn't, believe it or not. An estimated 5 million people struggle with this disease and many aren't even diagnosed. It breaks my heart that so many people struggle with this horrible disease. People who have gastroparesis frequently have to go to the emergency room and be admitted to the hospital to treat nausea, vomiting, dehydration and to receive fluids, pain medication and nutrition. The amount of times I've been hospitalized for gastroparesis is ridiculous and I have come across many ER doctors and nurses that barely even know about the disease. I am fortunate enough to have an amazing team of doctors that take control when I am in the hospital, so that I get the care that I truly need.

People often ask me how I stay so positive and upbeat... I'm not going to lie, there are days where giving up seems like my only option. What I will say is that my supportive family and friends, amazing team of doctors and God keep me going.

My sweet, sweet friends. I'm almost speechless, because when I think about how encouraging and supportive my friends are.. I lose my words. Every single night, I receive texts saying that they hope I can get some rest. Every single morning, I wake up to text messages saying that they hope that I have a great, low-symptom day. I'm friends with other "spoonies" online and I have an incredible support system throughout the entire country. I've lost some friends since I've been diagnosed, but have been blessed with people who have stayed by my side through the peak of my illnesses.

My medical team.. Just wow. They haven't given up on me, not once. My team consists of my PCP, three gastroenterologists (a regular GI, biliary specialist and a motility specialist), a neurologist, a neuro-gastrointestional nurse practitioner, three pain management doctors, a pain management nurse practitioner, a pain psychologist, a mind/body medicine nurse practitioner, an orthopedic surgeon, a general surgeon, an orthopedic physical therapist a pelvic physical therapist and a nutritionist. They are constantly keeping in touch with each other, so everyone is always on top of what is going on. Yes, they have disagreed with each other in the past, but they are on board with what everyone else is doing. They take their time with me, they help educate me and they inspire me to become a doctor myself. They have seen me happy, seen my tears.. they have seen me at my very worst, seen me at my very best and they have seen me hit rock bottom. I am reminded on a daily basis of the amazing souls who are behind my treatment plans. It took a lot of trials and errors with other doctors to find the team that I have now, and I just wake up every day with a grateful heart.

God. Our loving, caring, wonderful and amazing God. Whenever anyone asks me how I keep positive, I tell them that my faith in God keeps me going, all of the time. There have been times where I have wanted to give up, but God wouldn't let me. I remember when I had a severe flare-up of pancreatitis after a bile duct surgery in January. I had NEVER been in so much pain in my life... and that says a lot. I was screaming and crying in my hospital room, begging for the nurses to just give me something that would make the pain stop. After big doses of pain meds, bags of fluids and a heating pad for my abdomen, the edge was finally taken off, but I was still in a great deal of pain. I had my favorite stuffed owl at the hospital with me, and I just hugged it tight and cried out to God. I begged him to help me get through the night. I was crying and just kept saying "please" to Him.. I had my first complete meltdown and honestly wasn't sure if I was going to get through it... I woke up the next morning and my blood work was so much better and my pain was reduced! All I could do was thank God for getting me through the night. You see, God never leaves our side... even during the darkest times. I will never forget that night. I will never forget how I cried my eyes out to God.. and I will never forget how God brought me through one of the worst nights of my life.

I would be lying if I said that I never want to give up... I just know that I can't. There is too much to live for... There are too many things that I want to do. God has a plan, and that is what I remember when I feel like giving up. I never pray for God to take away my pain and discomfort... I ask God to get me THROUGH it. Why? Because how will I ever learn and grow if life were easy all of the time? You see, my health issues have taught me so much and they have ultimately brought me closer to God.

"I am grateful for all of my problems. After each one was overcome, I became stronger and more able to meet those that were still to come. I grew in all of my difficulties."

Since first getting sick three years ago and since getting diagnosed with gastroparesis one year ago, I have been able to educate myself and others about the illnesses that I have. I have been reminded who is truly there for me, who truly cares and who wants to help me. I have laughed, cried, felt sad and wanted to give up. I have learned that giving up is not an option. I've had ups, downs, flare-up after flare-up and sick day after sick day. I have lost jobs, friends, patience and relationships. I have gained strength, passion, friendships and hope. I have discovered what truly matters, gotten rid of anger and hate and learned how to be thankful for difficult times. I have had changes of heart, many frustrations and bad days.... but I've also grown each day and realized what truly matters in life.

Honestly, I have more bad days than good days. I have become a master at smiling and making things seem like they are great. That's just what people with invisible illness do. Don't get me wrong, I love smiling and laughing.. but sometimes it's so difficult to even fake it. Smiling through the pain and sickness is a must, but it's not always easy. The people who know me well can tell when I'm having a high pain/sick day.. but to a stranger or acquaintance.. I would rather just fake it and say "I'm good, how are you?" instead of seem dramatic and tell them that I'm sick. Honestly, most people don't understand what I go through on a daily basis... and it's not their fault. I used to get frustrated with people who "just don't understand" but I have realized that it's nobody's fault. You're not going to understand chronic illness unless you suffer yourself. I've become a lot more patient with my family and friends who don't truly get what I go through. I used to see it as people being careless, but now am a lot more understanding.

With gastroparesis, it's truly like having a never-ending stomach bug. My biggest and worst symptom is nausea and feeling "full".. I am on quite a few medications to help my nausea and vomiting. Due to malnutrition, I am constantly low on energy, exhausted and dehydrated. If you're a person who prays, I ask that you pray for a cure. There is a lot of GP research happening right now.. we are literally starving for a cure. There are many sufferers who are feeding tube and TPN (IV nutrition) dependent.. I am hopeful that more treatments will be discovered in the future and until then, I will keep fighting. 

"I've still got a lot of fight left in me.."

I don't feel like I am a strong person. Whatever ounce of strength that I do have, it comes from the Man upstairs. I'm just a regular person who believes, dreams and has faith. Like Robert Frost said: "The best way out is always through.." I know that I was dealt this hand so that God could get me through it. I honestly can't wait for the day that I become a doctor and can do research for different illnesses and diseases. I refuse to let the illness that I have rob me for a future in medicine. We can't let anything stop us. We must move on to follow our dreams. It won't be easy, but it will be worth it. I'm thankful for the difficult things that I have gone through, because they have made me the person that I am today. On the really bad days, I remember that I have come this far, and that God is going to take care of me and get me through it.

How do I get through the bad sick days? For one: I pray...I just ask God to get me through the day. Again, I don't ask for God to take the pain away, I ask Him to give me the strength to get THROUGH the pain. I often journal and write about how I am physically and mentally feeling at that moment and sometimes I actually cry out to God. I also like to distract myself from feeling sick. I will watch Netflix or listen to my favorite music, cuddle up with my dog, read a book or a magazine, blog (hey hey), text my friends, go on social media, dig into my studies or just take a nap and rest. Gatorade and ginger ale are my go-to's when I'm having a bad stomach day, and I have many medicines and home remedies that I will try to take some of my pain and other symptoms away. 

You see, no day is ever easy. No day is ever perfect. I have more bad days than good days.. but I am blessed. I am thankful. I am a fighter. I am a spoonie. I refuse to give up.

One year after my gastroparesis diagnosis, I have learned a lot. I will keep talking about this illness and I will continue to spread awareness. To my fellow fighters: keep being amazing and keep staying strong! xoxo

Thank you to everyone who has taken the time to read this blog post and educate yourselves about this disease. If you could take a minute to visit this website and learn more about GP, I would appreciate it SO much. If you don't feel like navigating the website, you can watch this three minute video:

https://www.youtube.com/watch?v=W--n6N2C1bU

Please visit this amazing website:

https://www.g-pact.org/


Thank you for all of your support.. today and always! 

xoxo, 
Emily