A Dose of Love and Support...Just What the Doctor Ordered

     I forgot. No, that's not right. I was way past forgetting. I didn't know. I didn't know that I could ever smile a genuine smile again. I didn't know the joy I could feel from busting a move to my favorite song. I didn't know what it meant to complete a coherent thought and have a conversation. I didn't know there was life outside of my own home. My heart was beating, my lungs were taking in oxygen, but my mind was dead to the world. By the time I made it to the emergency room for the umpteenth time, my poor body was so dehydrated and malnourished I could barely drag myself inside. It blows my mind that if it hadn't been for my amazing family and doctor stepping up and saying that I needed more than anti-nausea medications and fluids that I might have been sent home, again, to continue suffering. I'm so grateful for the people in my life who were willing to take over my care when I didn't have the strength to do it because they helped saved me.
     My first night in the hospital was so scary because I finally realized how far gone my body was. I weighed 76 pounds and couldn't maintain safe vitals without medical intervention. My blood pressure stayed so low that I required bolus (or large amounts) of saline fluids just to keep it at acceptable levels. There were nurses coming in and out of my room all night but with my sister sleeping by my side and my mom sleeping in the chair next to me, I was able to make it through. The next challenge tackled was my blood sugar. Since I was unable to take in much food by mouth I was always dizzy and weak so spent a lot of time on "fall watch". I felt like the most annoying patient having to page the nurse to walk with me the ten steps to the restroom every time I needed to go, which is about every 45-60 minutes when you're on a bolus I.V. drip!
     Early one morning after a relaxing hot shower, fresh jammies, and a comfy new I.V site I was ready to settle in to a good movie when the nurse came in to check my blood sugar and it was in the 50's. For those who don't know, that's not so great. The normal range is about 80-120, so they gave me four glucose tablets (which are delicious by the way) and took it again. My blood sugar had dipped even lower to 44. At the time I didn't realize this was such a big deal since managing blood sugars was new to me, but the number was blinking in red and that was the first thing that alerted me. When my nurse walked in with other nurses for help and guidance, I was a bit freaked. They said they were just going to give me a bolus dose of Dextrose fluid (really concentrated sugar water) in my IV. Initially I was happy that they could solve the problem without involving my stomach since too much sugar at once is no bueno for my tummy, but because the Dextrose is super thick like honey it just blew my vein open which was extremely painful. The IV technician blew three more veins before getting another access site and we tried the Dextrose again. Thankfully it went a lot smoother and my blood sugar was stabilized for the moment.
     My biggest challenge of this hospital stay was my feeding tube. This was a decision that was hard to make, but truly necessary to save my life. About five days into my stay I had a nasojejunal feeding tube placed which is a thin flexible tube that travels through my nose, down my throat, past my stomach and ends in my jejunum (a portion of the small intestines). This type of tube bypasses my stomach to give my body the nutrients that it needs without causing all of the symptoms I get from eating food. My hope is to gain some weight and get my body healthy while I work closely with my team of doctors to find a plan of treatment that will get my stomach functioning to a degree where I can maintain my health and weight by eating orally.
    It's taken some time to begin noticing the effects of having a nourished body, but I've slowly been feeling myself return. Although I still struggle with my Gastroparesis symptoms daily, I smile. I sing. I dance. I crave life! I look forward to the day I can have the energy to hang out again and even...I can't believe I'm saying this...get a job. I've learned so many lessons along this journey and felt my faith grow exponentially.  I want to send out a huge thanks to everyone who visited, called, sent cards and gifts, supported and cared for my family, shared scriptures and encouraging words, and just sat with me when that was all I could give back. I loved when the nurses would walk into my room and comment on how cheery my room was with all of the cards on the wall, balloons with their get well messages, and my bed full of stuffed animals keeping me company. Having so much love and support truly kept me going, and I know it will continue to help me move forward one day at a time to reach my goals.


Post NJ placement





Feeling much better after a few weeks of NJ feedings!

Rocky Days

     Lately GP has been giving me a hard time with my latest flare landed me in the Emergency Room. I can usually push through my daily symptoms to get in enough nutrition to function, but after a few days of not tolerating food or liquids I was so dehydrated I had no choice but to head to the E.R. for fluids and a little Dextrose (a.k.a. sugar water) which had me feeling ten times better. That little sugar rush had me bouncing off the walls! While I was in the hospital I had to make a big decision about my medication, a decision I have been putting off for as long as possible. I had to decide whether I was ready to give Reglan a try.
     Many GP patients have been in the same position and understand what a big decision this can be. There is no cure and very few treatment options for Gastroparesis (many of which are ineffective), so it's easy to go through the safest options fast with little relief. Reglan is not a very favorable treatment option because although it can be effective, it can cause some pretty serious and in some cases permanent side effects. I've read horror stories of people whose lives have been completely changed because of the effects of Reglan. Yet, I've had doctor after doctor suggesting I give it a try. After a little research, I found that yes it can cause some pretty nasty side effects, but short term they are not as likely to occur.
     This still puts me in a difficult position because if the medication does work I could be feeling good for a couple weeks, then feel terrible for the next few weeks while I give my body a break from the Reglan. I guess any break from my symptoms is better that no relief though. Until this last flare I had decided that Reglan was not for me, but when you weigh not being able to eat to using Reglan for just a week to hopefully give my stomach a little jump start, the pros definitely outweigh the cons so I decided to give it a try. A little fluids, I.V. Zofran, Pepcid, and a dose of Reglan later, I was able to drink and eat enough to be discharged. Did I leave at one hundred percent? No. More like fifty percent but it was a huge improvement from the way I (barely) walked in.
     I'm so grateful to have the support of my family and doctors that have done all they can to help me. I'm ready to also acknowledge that to some degree my health is in my own hands. By slowly adding exercise, healthy and nutritious foods, and removing as much stress from my life as I can, I hope to get my health as stable as possible. I saw a quote on Instagram (I can't remember where) that said "The road may be long, but I'll enjoy the walk" that I loved. Whether I like it or not, this is my life at the moment so I'm going to make the best of it=)