I have some rare diseases which puts me in the “chronic illness” category. I’m not gonna lie, it sucks. But, I’m fighting and not giving up hope!
And hopefully, by sharing my journey and research, I can raise awareness and community to help others who are also fighting this battle.
I also try to fundraise as much as I’m physically able so I can donate to medical research for the conditions that I have.
So, here’s by backstory…Growing up I lived a pretty normal life. I was active and loved to be outdoors. Most importantly, I was healthy. I did have a few episodes that we can now connect to my chronic conditions, but in my childhood the symptoms always ended up resolving themselves.
In 2017 I had a short-lived stomach bug and ever since then I have never been the same. The stomach bug triggered something in my body and I started having severe pain and nausea when eating. Then came the dizziness, flank pain, headaches, leg pain, extreme fatigue etc. As the years went on my symptoms have only gotten worse and I ended up needing a feeding tube for my nutrition.
We have traveled across the United States to the best hospitals and doctors searching for answers. Slowly, after countless tests and consults, the pieces of the puzzle began to come together. I was first diagnosed POTS, Dysautonomia, hypermobility EDS, MCAS and Autoimmune Autonomic Ganglionapathy.
Three and a half years later, in early 2021, we got my scans in front of some vascular surgeons who could see four abdominal vascular compressions on my 2018 scans! So now we knew I also had Median Arcuate Ligament Syndrome (MALS), Nutcracker Syndrome (NCS), Superior Mesenteric Artery Syndrome (SMAS) and May Thurner Syndrome (MTS).
None of the US surgeons that we consulted with wanted to take my case because of the multiple complexities, including two compressed renal veins, and we were referred to two doctors in Germany who specialize in abdominal vascular compressions.
In the summer of 2021 we traveled to Germany and I underwent a 7 hour open surgery to fix all of my compressions. My blood flow has been corrected, but I have a lot more pain and Dysautonomia sypmtoms since my surgery.
My journey has been a long, hard and frustrating road. It’s nowhere near over and I still need more surgeries.
Raising Awareness
I’m adamant about raising awareness for vascular compressions and the other rare conditions that I have so others don’t have to go through such a long, tough journey like I experienced to get a diagnosis and help. Many people worldwide are suffering from rare conditions and going undiagnosed and not getting proper treatment. Hopefully there will soon be better treatments and maybe even a cure for these conditions.
Finding the Light
I believe that no matter what our current worldly situations are, there is always something to be grateful for. Finding the light and positive in each day, no matter how much pain I’m in or how awful I feel, is something I constantly strive for. I hope I can be an inspiration to others!!!
Wanna connect on Instagram? You can find me at @everydayhopeandgrace
Now faith is confidence in what we hope for and assurance about what we do not see. Hebrews 11:1