I’m sorry I’ve been absent for the last few months. A lot happened and I’ve been trying to process and deal. My gastroparesis has become a complete nightmare. On top of that I had to move unexpectedly. All this caused some major emotional distress and resulted in a depression/anxiety flare from hell. Lots of therapy sessions, crying and talking it out has gotten me back to a good place.
In March my gastro team decided a feeding tube was necessary. I wasn’t getting the nutrients i needed, and was becoming malnourished. I was barely eating anything. I couldn’t tolerate solid foods, nor liquids. I was averaging maybe 1000 calories a WEEK!!! This wasn’t good, not at all. My gastro team had suggested a J-Tube in November 2018, if things worsened. I wasn’t ready for that. I was scared. However, I knew I needed help, I needed something to help me get the nutrients my body so desperately needed. So, it was decided March 11th, I’d get my J-Tube. I was going to travel to my gastro team in Tampa. I discussed it with my dad, and made the plans. We talked Thursday, I explained to my dad how my levels were dropping, and I was becoming malnourished. He said he didn’t like the idea of a feeding tube and it wasn’t able to him until I was 105lbs. What, 105lbs, i’d be dead or nearly dead at that weight. However, he said he’d help and watch my son for the two days for me…
Unfortunately things changed drastically that weekend. Things changes as such that I had to move unexpectedly and within that week. I called my best friend Emily on the way home. She came and talked to me, leant me her shoulder. I had days to move. I needed to coordinate packing and moving in just a few days. I can’t lift furniture, I can’t over do it.. Yet I had no choice. My friends Chelsea, Emily and Aly rallied around me that weekend. Chelsea spent two days with me, just days after she had surgery. She was there, helping me pack. Sorting through everything. By Sunday, I had a lot done. We had help to move my furniture into storage. I moved as much as I possibly could into storage. I called my mom, we coordinated my move there.
Through all this I had to cancel my surgery, no J-tube for me. I had no time, I needed to move and get things settled here at my Mom’s. The emotional toll was heavy. This sent me into a flare, this made me feel unworthy, a burden. This made me feel so low and unloved. This affected my relationship with many people. If my dad could turn his back on me, who else could??? Sadly this affected my relationship, and still is to this day. I’ve been doing therapy weekly, working through my emotions, feelings and everything.
While settling at my mom’s my gastroparesis just wasn’t cooperating. I couldn’t tolerate much of anything. It was bad. My mom saw first hand how I was suffering. I was scared, I was so so so hungry but eating caused such horrible pain, bloating and nausea. I couldn’t handle it every time I ate. I was so tired of feeling sick. Finally I caved. I called my gastro, I explained how things were. Bloodwork showed I was deficient in a lot, I was becoming malnourished. My weight started dropping. I was so weak and tired. My mom’s support meant the world to me. We finally rescheduled my J-tube placement for April 11th. We showed up that day, prepared for surgery. Finally i’d be getting the nutrition I needed. Oh how wrong we were. Sadly my surgery failed. They couldn’t place my tube. My doctor said it was like someone glued my intestines together. What he didn’t know was that I had stage 4 endometriosis years ago. I had it on my bowels. I had so many surgeries to deal with my endo. I cried, I was so confused. I felt so defeated. This failure led to my needing a surgical team to place it. My gastro was able to get me into the surgeon within days.
I met with the surgeon. I wasn’t prepared for that appt. He feels my entire GI system is failing. I’m having swallowing issues, and issues with my bowels. He’s concerned if my system is failing, what do we do?? He said my nerve damage/EDS/Dysautonomia has caused this massive storm within my GI system. I couldn’t even process it. We discussed feeding tubes, possible colostomy.. How, how could this be my life now?? It’s not fair. From that appointment, within one week we had rescheduled my GJ placement. April 25th… what a lot to process from that appointment. Feelings of being a burden popped back up, feeling abandoned. Just so many emotions to process. When we arrived to the hospital, i started getting nervous. Was I making the right decision? Do I really need this? I cried, my mom reassured me I was doing the right thing..We finally got my GJ placed, and sadly within a week, the ER broke it. This resulted in a 4.5 day admission to the hospital. It was ridiculous. The good though, getting the nutrients I need, finally was an amazing feeling. To use my tube, to realize this tube literally saved my life. It’s eye opening just how bad things were. Another few weeks and where would I have been?
Through all this, I missed the comfort and support of my dad. He had no idea I was going through all this. I felt like a burden. All this, the lack of support, it takes a toll on you, both emotionally and physically. Not having the support you once had, it’s heartbreaking. It leaves you reeling, trying to figure out what YOU did wrong. I realized, this wasn’t on me. I did nothing wrong except try to let my parents know what was going on. I just wanted their support, compassion and understanding.
One thing that remained constant, my mom’s unending support and love. She rallied behind me, went to my appointments with me, we asked my team questions and made the best decisions for me. She’s been with me for every surgery, major diagnosis and through this entire journey. Her being a nurse has helped immensely. She’s helped me navigate this crazy stressful world of healthcare. She’s held me as I cried. Reassured me i’m still me, still loved and still beautiful. Each time I cried after surgery, she was there holding me, hugging me, lending me her strength and love. Having her in my corner has really helped me through this. She’s always been unwavering in her support of me when it comes to my medical care. Her here, holding my hand as I was prepped for surgery, then told it failed, was a godsend. Really, there’s nothing like the unconditional love of Mom. I’m thankful everyday she opened her home up to us, and has rallied around my son and I through this. I know with her, and my close friends in my corner, I can get through this. Je T’aime Maman.
I cried for days after my tube was placed. Every time I saw it I cried. Would I still be attractive? Am I still loved? Why? Why is this my life. I cried so much, I got so depressed. I decided to order a new bathing suit. Looking at myself, my body with this tube. Realizing this is my life. This is what is essentially helping keeping me alive. I’ve been through hell with my body. I’ve been through countless surgeries. Countless scars, 2 medical devices in my chest. Now I have one in my stomach.. This, this is alot to process. But you know what?? I’ve learned just how strong I am. I’ve learned i’m still me, I’m still a fighter. My scars tell a story, my body shows my journey. My fight for life. My fight and will to not let this illness destroy who I am. I’ve decided to embrace my tube, to live, to truly live.
This is the new me. The me that has to be tube fed due to gastroparesis, and intestinal dysmotility. It seems my entire GI system is malfunctioning. My Ehlers Danlos and Dysautonomia are wreaking havoc on my body. My levels were dangerously low, and I was malnourished. my weight was dropping rapidly. I fought hard to not get the GJ tube, unfortunately I had to make the best decision for myself and my health. I’ve struggled emotionally with this. I cried for two days every time I looked in the mirror. I struggled with the insecurities of this. This hasn’t been easy for me. I’ve lost friends, I’ve had family turn their back on me. I fight, I stand tall. The new me will rock this, I won’t be ashamed of it, for it doesn’t change me. It allows me to live. To get the nutrients my body so desperately needs. Without this, I’d be starving to death. And that isn’t an option. I look at myself and realize how strong I am. How hard I fight to never give up. This is Ehlers Danlos, this is Gastroparesis. Gastroparesis is a horrible disease, but i refuse to give up. My feeding tube saved my life. I’m going to embrace it.
I’m unstoppable. Most importantly, i’m NOT a burden. I’m not an inconvenience. I’m hoping to go back to school. Get my degree in Interior Design. I want to specialize in Handicap Accessible homes/businesses. All inclusive. I dream of having my own firm. I’ll get there. Some day. I’l do it, for i’m not giving up. I’m just getting started.. This phoenix will continue to rise from the ashes. My darlings, I want you to rise too. I want you to believe in yourself. Go after your dreams. Don’t give those up!!!