I was surprised to learn today that there is a Doctor who trained at Cleveland Clinic here in Arizona who is also trained in MALS or Median arcuate ligament syndrome. MALS is a condition in which the median arcuate ligament presses too tightly on the celiac artery (a major branch of the aorta that delivers blood to the stomach, liver, and other organs) and the nerves in the area which is called the Celiac Plexus. The area I have had over twenty eight (28) celiac plexus blocks into. The blocks will allow me to eat and drink anything without pain since they are blocking the never signals that trigger the intense pain and vomiting causing me not to want to eat food.
Since being diagnosed with a celiac plexus pain syndrome has also led to better care overall. I am on a new insurance that is denying my treatments but it is opening the doors to better Doctors. For the first time I would rather continue to ask my father and boyfriend to help pay cash for the treatments while we wait for a hearing with a judge then switch insurance and have to lose these awesome Doctors.
I have had MALS all of my life. It explains so much. I have tried to go back to a diet that I ate similar to in high school and it’s helping but lately I have developed vomiting that requires massive anti nausea medications multiple times a day. Mostly in the morning in order to get out of bed I need to take zophran and let it kick in. I love getting up early with my boyfriend and having that extra time together, but it all depends on how horrific my nausea is. My life revolves around my celiac plexus area. For the first time today, I had a Doctor apologize and have remorse for having to live my life with such a horrific disease.
I was able to be honest and open with her and was so thankful for being treated like a human not a disease. She mentioned I possibly have a Mitochondrial Condition that has gone undiagnosed and I told her that has been mentioned before. She said that they would do their best to get to the bottom of why I am dying at such a young age. I want to try and get more years and I refuse to give up until someone tells me why. Why is this happening.
I never sought out drugs or surgeries or medications, I just wanted a diagnosis. Right now I have over twenty two (22) diagnoses but not one reason as to why. The why is the reason I continue to fight. I need to know why and I want to know before I die. It’s as simple as that. Whatever is killing me at this age needs to be known. I have lived an amazing awesome life but I lived it disabled and hurting every day of my life.
I look back on my accomplishments and I am astounded what I have done while being so sick. I had no idea I was displaying Parkinson’s Symptoms. I always thought it was lupus. I believed and relied on that diagnosis and when it failed me, I felt as though my entire life was lost. Lost to some mystery nightmare without a name. Without remorse. Without answers. I had no option other than to pick up and continue starting businesses, planning events, traveling the world, going on vacations to Hawaii, Graduating from College, Successfully planning and executing my own Super Bowl event twice at Super Bowl, the Week of. I could write the best stories about my work life but I keep that part of me hidden and only open up my stories to close friends and I save them for dinner parties or just a good laugh.
I look back and I see all that I have done even through ten surgeries, twenty hospitalizations in such a short time and while battling mental illness that was not properly diagnosed or treated At all during my entire life. The odds have been stacked up against me to fail. To be a medicated zombie sleeping my way through life just waiting to die. That was not how I spent even my worst days. My worst days I usually accomplish more because I am forced to be down, like today. Today is a bad day. The entire week has been a bad week. I have horrible nausea from MALS and I can not control it. Nothing is stopping the nausea so I am hungry, I eat, it hurts and the nausea hits. Headache nausea accompanies the vomiting and then I have to lay flat and wait it out again. Yet, the nausea just stays there. Waiting, coming on as fast as it turns off. Nausea. The only thing that really can take me down.
I sent my dad a text message today telling him thank you for not giving up on me. He is such a good man. I can not wait until I can do something very nice for him. He deserves It. He could be enjoying retirement but instead he’s taking me to appointments and making sure I can afford my medications and pay cash for my treatments. I hate having to ask but he also knows I hate being in pain. If only the insurance company would cooperate and just pay for treatments that are cheaper than me being in the hospital and having to go to all these specialists. $300 for a treatment is what they are denying. It’s so frustrating. Such a small amount of money that changes my life. But my dad. He’s never said no. I look forward to the day I can pay him back for helping me so much. He wants to buy an RV and go travel. He deserves it!
Well, I am not feeling so hot today and the nausea is coming back so I am going to go lie down. I appreciate you following my story and allowing my honesty and truth to be spoken. I have a lot of great information I want to share I just need to rest in between blogs today! It’s one of those days, as we say in the chronic illness world.
I hope you are having a good day.