Share Your Scars - Danielle & Gastroparesis
This blog content is strictly based on personal experience and condition of the writer Danielle, Vital You does not make any medical claims in the cause or cure of the condition and treatment.
-Tell us a bit about your condition:
I was diagnosed with gastroparesis in 2017. I was eating my favorite meal, (a big bowl of Mac and cheese!) usually I can finish the whole bowl but I noticed I was stuffed after just a few bites. This is the main symptom of gastropaeresis feeling of fullness, among many others. Luckily I wouldn’t experience those until 4 years later. I would say I got off pretty easy those first 4 years. In fact it didn’t even feel like I had a disease or was sick at all. I went to the doctor, told him my symptoms, got diagnosed, took medicine and was in the clear for 2 years before another flare up happened. I repeated the medication and was okay again until 2021 when my whole life changed drastically.
-How has this condition negatively impacted your life?
I was living my “best” life. I had moved to California and was living there for 4 years. I had “made” it. I was working a job I loved and had made great friendships and had just met the love of my life. Everything in my life was going perfectly. Then my gastroparesis came back. At first, I didn’t think it was a big deal. I was getting full quickly but then the bloating started. I’m talking 9 months pregnant type of feeling after one bite. Then the constipation started. It was 2 weeks since I made a bowel movement and I knew I needed to see a doctor. The only issue was I didn’t have a specialty doctor in California because I had been fine up until this point. With Covid it took me 3 months to get in to see anyone. I was using enema’s to relieve my chronic constipation. I was in so much abdominal pain I went to the hospital and begged them to help me. I was prescribed medicine that didn’t help and gave me an allergic reaction. I went to urgent care and told them what was happening and asked them to prescribe me the medicine I had taken before. It didn’t help this time and I was told after multiple use that particular medicine loses its healing powers. I finally saw a specialist and they prescribed me medicine to help my constipation which gave me some relief. I was scheduled for an endoscopy in a month. At this point I was starting to get frantic. Nothing I did gave me any relief. My world turned into a nightmare, it started affecting my job and my relationships. I had no energy to do anything. The day before my procedure it got canceled because of insurance. I had to then see another specialist that told me I had IBS and he too wanted to scope me, that procedure got denied by my insurance. I finally switched doctors a 3rd time and saw a specialist that was able to scope me. He told me I had chronic gastritis and scarring in my stomach. He tested me and told me I was fine and that he didn’t know how to help me with my gastroapreis. This in total took 9 months. At this point I had lost 20% of my body weight. Was barely eating besides smoothies and broth. Felt nauseous and sick every second, couldn’t sleep and barely recognized myself. My parents flew me home where we saw another stomach doctor, he referred us to a motility doctor and I was hopeful finally. I had to wait about 2 months to start the process and get my endoscopy. At this point walking became difficult. I was getting nerve pain and one day I woke up and I couldn’t move. I was rushed to the hospital where I stayed for 1 month. I almost died on my 3rd day and was put into icu. The doctors were scratching their heads at my paralysis. They told me I had lymes disease as well. Which I later found out was untrue. I was poked, prodded, given a feeding tube and told I was mentally ill. you name it, I was through it. Finally they did a procedure on me in the hospital that was temporary that would give me some relief. And it did! I was able to eat again. My life slowly got better. In the meantime I had to give up my career, friends and life in California and move back to my hometown to receive care. I still have ongoing issue and am still in “my story” and don’t know If I’ll ever get a happy ever after.
-How has your condition positively impacted your life?
With darkness, comes light. I learned SO much from this experience and I truly believe you are only put through things for a reason. In honesty looking back at what I thought was my “dream life” I wasn’t as happy as I had perhaps thought. I was feeling creatively stifled by my job at times. California had become dangerous since the pandemic. My most positive thing to come out of this illness, is that I was feeling SO lonely, in a desperate attempt to get some outlet I started an Instagram account where I posted about my struggles, and I got followers to my surprise. There were other people out there like me struggling too! I connected with a community I had no idea existed. And to this day those wonderful people are helping me through it. In having to give up my job it made me look at what I wanted to do. I decided I’d make my own store on Etsy and create beautiful accessories and apparel for people like me. This illness also taught me how to appreciate my life and the little things. Our good days are often few and far. We have to often be our own cheerleaders and advocate for ourselves. It made me bolder, braver and even stronger.
-How do you find emotional/communal/informational support with your condition?
In creating my own community on Instagram, I found other communities, I do a weekly zoom on Wednesdays with other chronically ill people. I joined a website where we often ask questions, share our concerns etc just for my illness. Most of my family is understanding and supportive. My friends are doing the best they can, although I have lost a few. My boyfriend is an amazing rock for me and moved to be here for me although it’s not ideal he is my saving grace. I have a dog that I cuddle and brings me joy. I also let myself feel how I feel and try not to beat myself up over bad days.
-How do you find relief of physical symptoms?
With my condition I cannot take any pain medication which is in a sense a good thing but I also have to get creative. I use CBD lotion for pain and gummies to help me sleep. I love the brand infusionz and just cbd. I also have a heating pad specifically for my back and one for my stomach. These help tremendously. Another thing that brings me relief is a hot bath with Epsom salt and cbd bath bombs or any bath bomb that has healing properties, bath time is kind of a nice way to relax and relieve pain. I also take turmeric and ginger supplements for joint pain and digestive healing, I’m not sure if it works but I do it anyway. I also swear by the brand trummydrops for my nausea. They are literally the best and work so well.
-Has the Vital You products or community aided your condition or mindset in any way?
Oh my gosh yes! I found Vital you’s bath bombs after searching endlessly and they are such a perfect addition to my bath. Not only do they help with pain but they are just mindful and amazing with the crystals.
-Do you find relief from hemp products? If so, how is it consumed and what symptoms does it help with?
Yes! As I mentioned before I am a huge fan of CBD I use it in lotion, chapstick, bath bombs/salts and gummies. It helps relieve my joint and chronic pain, helps nourish my really chapped lips and helps me sleep at night.
-Is there anything else you wish to share about your condition?
Gastroparesis is such a tricky disease. It’s different for everyone. What might work for me will most likely not work for you. Every case is unique. It also changes over time, so what worked for me in the past doesn’t work for me now. The doctors aren’t even close to figuring it all out yet. While they have come a long way there is still a long way to go and it can be a very isolating and scary disease to have.