It has been another eventful stretch in this long, unpredictable journey with chronic illness. Between new diagnoses, upcoming procedures, and small wins, I wanted to take a moment to digest where things are and what is coming next.

This week, I had an endoscopy on my upper GI tract and needed to stretch my esophagus after struggling with an increase in symptoms. I have had difficulty swallowing, choking, regurgitation, vomiting, and pain. About a year and half ago, I had a Gastric Peroral Endoscopic Myotomy (G-POEM), which is a procedure to treat severe gastroparesis. The surgeon cuts the muscle at the pylorus (sphincter at the bottom of the stomach) to help the stomach empty more efficiently. Unfortunately, after having success following this procedure, the G-POEM has essentially failed (reversed itself) and the pylorus has closed again. It’s rare and unusual, but fixable. The plan is to redo the G-POEM and reopen the pylorus as soon as possible after my appointment with the surgeon next week. I am a bit nervous with the recovery, as I really struggled after the first one and it was the start of losing a lot of weight. I know it will help with my stomach and esophagus symptoms, but I hope it will help my lower GI symptoms, too.

During all that, I received a new diagnosis a few weeks ago. May Thurner Syndrome is a vascular condition where a vein in my pelvis is compressed by an artery, reducing blood flow and causing swelling and significant pain. Not only that, but the compression interferes with my circulation in my left leg, making my heart work extra hard to get blood back and forth. I meet with a specialist on Friday to go over my imaging and next steps. Treatment varies depending on multiple factors, but most often a stent is placed in your pelvis. This diagnosis is still new to me so I am trying to learn as much as I can before moving forward.

I also had my end-of-year cardiology exam, including an updated echocardiogram, and thankfully it looked great. My heart itself is healthy, which is always reassuring to hear. My POTS symptoms, including dizziness, high heart rate, and chest pain, are still difficult to manage right now. My doctors believe that treating the May Thurner compression should help since it is contributing to the poor blood flow and worsening my autonomic symptoms. For now, we are holding off on any major POTS interventions until that is resolved. I am hopeful that these symptoms will improve when the compression is addressed.

My lower GI symptoms have been somewhat managed, if that’s even the correct term. I still have intense pain and nausea but taking it one day at a time. I will be doing a defecography soon to check for pelvic floor dysfunction, something that could explain the fluctuations, motility issues, and pain. I was recently tested for Small Intestinal Bacterial Overgrowth (SIBO), a condition where there is an overgrowth in the small intestine that can cause various issues in the GI system. For someone like me who has severe motility issues, and I can’t always digest food, it is common to have a high bacteria count. My GI doctor believed this could be causing my debilitating fatigue and brain fog, but my test came back normal. I was genuinely shocked that I don’t currently have SIBO, but that is one less thing to worry about right now! That is a win.

Next, I had my long-awaited consultation with a geneticist, and it was so validating to finally sit with someone who sees the full picture. They strongly believe there is an underlying connective tissue disorder, likely Ehlers-Danos Syndrome (EDS), but since there are many types, we are still in the process of narrowing it down. In early November I will meet with the geneticist to review my plan for testing. We will be testing for all possibilities of connective tissue disorders and any genetic links that might explain how all my conditions are intertwined. I will have a better idea of what is being tested after this appointment. They also will be looking into certain cancers that run in my family, offering a deeper look into my family’s health. These types of answers not only help me and family dissect my illnesses, but it can also help me when I am ready to have my own children. Medical advancements in technology are really amazing, aren’t they?

Continuing on, I have also been exploring a possible spontaneous Cerebrospinal fluid leak (CSF) with a sinus/skull base specialist. This sounded so scary to me, thinking fluid, that protects my brain and spinal cord, is escaping. It was recommended I follow this through, as headaches, stiffness, and many other symptoms can be caused by this. Those with EDS have a higher rate for spontaneous leaks due to weakened connective tissue (tearing or ruptures) around the brain and spinal cord. I have struggled with headaches and migraines for a couple decades now, so exploring every angle is worth it.

The fatigue and brain fog remains intense. I honestly thought they were connected to SIBO, but now that it’s ruled out, it continues. I know dehydration, nutrition, and poor sleep play a role and my weight loss has caused a lot of problems. It continues to drop and I hoping the repeated G-POEM will allow me to eat more, eat better, and get some nutrition.

Despite the whirlwind, there is always some good news worth celebrating. My spinal stimulators are back to working beautifully after two revisions I had in 2023. My CRPS pain is managed and the surgeries I had for the four nerve compressions in my right arm are still effective! It is such a relief to have something that is consistently helping.

Mentally, it’s been one of the hardest stretches yet. My therapist is truly an angel, and our weekly sessions have become an anchor in all this chaos. We have been using EMDR and deep trauma work to start the process of healing from years of suffering, grief, loss, and fear. Healing while your story is still unfolding is something I was not prepared for, though. It’s one thing to process trauma from the past, to revisit it, name it, and slowly find peace. It’s an entirely different thing to continuously face new trauma and uncertainty while I am trying to heal from the old.

Every week, I feel like I am balancing two versions of myself: the one who is doing the work to get better, and the one who is just trying to survive what is happening now. It’s hard, emotional, exhausting work, but it’s also the most important work I will ever do. Therapy reminds me that even if my circumstances aren’t steady, my commitment to myself can be. Healing is not about moving on for me, it is about learning how to carry everything I have been through and still find moments of light in the process. Living with chronic illness means constantly adapting, physically, emotionally, and mentally. While some days are hard than others, I am learning to give myself grace.

This is a lot. It always will be, but every new piece of information helps connect the dots between my conditions. I may not have all the answers, but I am moving closer to understanding my body, my limits, and my strength.

To anyone else out their navigating illness, endless obstacles, or the unknown: I see you. You are not alone. You are not dramatic or overreacting. You are surviving something others may not understand and that is resilience in its purest form.

Thanks for reading.