I was born with an inability to eat. My parents baptized me on the third day, it was looking grim. That night I finally started to nurse. My mom breathed a huge sigh of relief. That was just the beginning.
I struggled to eat, I had no interest, my entire childhood. I was underweight. I didn’t like anything but sauerkraut, kale and split pea soup. Food, me gaining weight, became a constant battleground. Scars of that battleground haunt us both to this day.
In my teens my hormones took over, I ate everything! I loved everything. But eating everything didn’t come without unpleasant side effects. I had frequent stomach aches, that I discounted due to overeating. They got worse & worse until I finally went to my doctor for help. X-rays showed a “bubble”. He gave me a tagamet. I was too young & skinny to really be sick.
After the birth of my first child, Soren, I continued to have all day “morning sickness”. This has continued to this day. I learned not to eat mornings. I learned to be slow mornings. I learned not to trigger the extreme nausea. I thought it was just me.
I’ll skip the rest and get to now. Now I’ve been sick-sick a year. At the end of 2021 I couldn’t eat or drink. If I forced myself, it came shooting back out. The pain was insane. My chest felt like an elephant sitting on it, such intense pressure. My stomach felt like it was being torn in two from the inside out. At the ER(s) my heart was fine. Outstanding even. I was constantly dehyrated, and constantly berated and told to “just drink”. There were no answers. No help. I felt as if I was being abandoned to die.
My husband, my hero, stepped in and saved me. I believe he literally saved my life. He found medics to give me IVs. Lots of IVs. Lots of liquid. Precious liquid that stopped me from dying, spinning, fainting, laying on the couch losing my ability to do anything. By January 2022 I was alive, albeit 40 pounds lighter.
In January 2022 Tess found a possible answer. On TikTok. I hate TikTok. But she made me watch… and… well… it did sound just like me. I mean, exactly like me. I know enough from being a psychology major that we tend to see ourselves & our ailments in others, but this was e-x-a-c-t. This was me to a T. This was MALS.
MALS is Median Arcuate Ligament Syndrome. It’s the ligament that holds the aorta, nerves, etc. in place down the middle of your body & through your diaphgram. My ligament has slid out of place, compressing my celiac artery and solar plexus ganglion. The reduced blood flow to my digestive system, and the compression of nerves, causes my pain, pain with eating, problems with digestion and all the other million+1 symptoms.
I was officially diagnosed on March 24, 2022. I took another 5+ months to see a surgeon. A surgeon who said, and I quote:
You are too old and too fat.
By then I’d lost 60 pounds in less than a year. I was a month away from my 55th birthday. I was helpless and hopeless.
In my despair, I posted on Facebook. Facebook that I normally save for the good things. The things I want to remember. The happy things that come up in my memories. This time though, I posted my anger at that surgeon, my condition, my utter helplessness and loneliness.
Of course I got lots of responses and prayers, but I also got help. Alana’s (my bonus kid) mom is a doctor. Not *my* kind of doctor, but a doctor that knows other doctors. Because of her I reached out to Walter Reed Vascular. I finally had a true telehealth appointment with them two weeks ago. While they have no experience with MALS, that doctor did know a guy.
That guy called yesterday. God willing my surgery will be this December. I cannot adequately express my incredible JOY! It won’t be my only surgery, I have some additional abnormal physiology, but it will be the one that gives me a shot at life 2.0.
I am ready. I will be taking the next couple of months off. I need to get healthy. I need to put my heart & soul into getting my body (and sanity) back. Angel, my partner, my friend, my angel, will helm the Studio while I’m gone. But I will be back. Better. Stronger. Faster.