Let’s get the good news out of the way, in fact, it’s double good news! Most importantly, I’m coming back. Woooooohoooooooooo! I have no idea if you’ve all missed me as much as I’ve missed you but I’m bursting at the seams excited to be coming back. Secondly, but actually more importantly, I’m alive. Wooooooooohoooooooo!
I had my big, huge, life-changing surgery on May 3rd. I went into it surprisingly calm. I was so ready. I’d prepared Dave that it would probably be twice as long as they were predicting (3 hours) because of the experiences in my support group. It was a good thing I did because the surgery took almost 10 hours. I had MALS (Median Arcuate Ligament Syndrome) and NCS (Nutcracker Syndrome). Both are vascular compressions that deprived my digestive organs of much needed blood supply. My own body was slowly strangling itself. I’m incredibly grateful to the talented Dr. Nagarsheth in Baltimore for fixing me, and saving my life. I don’t say that lightly, it was truly wizardry on his part. I also thank the 6 anonymous blood donors and the 1 (cadaver) vein donor, without their selfless acts I would not be here.
While Dr. N worked hard to put me back together, poor Dave had to wait. And wait. And wait. I’m incredibly grateful to Sarah for taking yet another day off work and waiting with Dave. This part was easy for me, I was out cold, Dave had to wait every agonizing minute. My veins had waited a long time for this surgery, and as a result they weren’t very strong. I wound up losing a lot of blood and my surgical team kept me sedated after surgery so my body could stabilize. I “woke up” from my 3-hour surgery more than 24 hours later. Very confused it was suddenly Thursday.
Those first days in the ICU were not fun. Luckily I was blessed with an incredible care team who worked so hard to help get me back up. I’m ashamed to say that the first time I rolled over, I cried. I felt my insides were tearing apart. I quickly learned to hold a pillow to my incision (eight inches, curling around my belly button!) to help reduce the pain. Once I learned to sit, I quickly progressed to shuffling around my room, then walking down the hall, and finally doing laps around the ward. Each time I got back into my bed and slept like the dead. Even sitting felt like running a marathon.
After just six days in the ICU and the vascular ward, I got to go home to Sarah’s house. The stairs to my bedroom almost killed me. I used my forehead to hoist my body up the stairs. I fought for every inch to get up there, tears again embarrassing me. Those first weeks were incredibly hard. I had a home nurse, and a physical therapist. I had Dave. I had Sarah. I had Mike. I had Jabba, my canine bestie. And without all that support, I couldn’t have done it. It was truly a monumental task to heal.
But I did heal. I am healing. It will take six-to-18 months to fully heal. However, I already feel a million times better than before! I can eat! Albeit I’m suddenly, mostly, vegan. My pancreas is not happy with me. I’ll take just vegetables & fruits for the rest of my life if it means I can eat. My nutrition is so much better that my hair is starting to grow back. I have a bazillion baby hairs, about a quarter of an inch long, and my head is itchy LOL! All that new hair is soooooo itchy.
The one thing I am struggling with is my limits. I am a go-go-go person. I’m a doer. I live for experiences. And now I have to make choices every day. I had a friend visit last week who has a similar illness, and she introduced me to Spoon Theory. The woman who came up with it has Lupus, I do not, but otherwise her description of her limits is a perfect match for me. It’s helping me understand how to parcel out my days.
And now that I know how to parcel out my days, I’m ready to return to work. Angel & I have been chatting and I’ll be taking on a slightly different role. There’ll still be the managing, but I’ll also be doing a little more fun, tutorially stuff. I’m pretty excited! It’s right in my wheelhouse. It’s what I love to do and I can’t wait to dive back in. Though. I’ll be wading in slowly. I’ll be watching my spoons closely and making sure that I build back up to full time without a setback.