Dateline & Updates: February 2007. I’ve decided to begin keeping a log of my main events/feelings in the hopes to inspire or relieve anxiety in someone else. Not many 34 year olds are about to receive a metal pain pump called an intrathecal pump…and of those I’m not sure how many have a job they love and work all the time but have become too ill to work as often as one wants. I don’t want to disclose too much about my work because I’d like to remain anonymous about what I’m about to write about. (Who really wants to talk about their lover and being forced to be on morphine particularly when very few people would understand it doesn’t actually affect my brain since it goes through the pump directly to the source and therefore requiring only tiny amounts).
Everything started 6 years ago on New Years Eve day. That’s when I first noticed bizarre symptoms. I couldn’t feel my left side from head to toe. It was numb but the skin was over sensitized if you touched it. I worked a lot (average of 18 hours a day) so everyone thought it was stress related. Since my tongue was also numb on the left half, friends rushed me to the ER. The ER doc thought I’d had a mini-stroke. After months of tests for MS, lupus, etc., I gave up and decided to live with it. After all, I told myself maybe it had something to do with getting shingles when I was 6 yrs old on my left side. It’d always seemed weaker.
I’d never had stellar health. I’ve had a broken arm and an ovarian cyst rupture before I was 15. Then in my 20’s I battled with interstitial cystitis for 6 years before being cured completely.
(Thank god for UCLA medical center).
But this new oddness in my body was starting to take me down. I started some cycle I couldn’t stop. I saw acupuncturists, therapists, new age chiropractors, medicine shamans, Mayan doctors in Mexico, you name it – I tried it. I followed up on every lead presented to me. After all, I just wanted to get back to work at my normal pace. Friends would definitely call me a workaholic but I was proud of it – I love what I do (which I’ll keep anonymous).
I picked myself up off the floor and went on with things including surfing (which I loveeeeee!!!!) until one dreadful day I ended up looking for a place to throw up. I knew I was in deep health trouble and called a friend to help me. She rushed to her house where I was rolling uncontrollably on the floor writhing in pain. How could I go from literally surfing the day before which requires decent health and strength to this?? Let me cut a very long story short and say this: after leaving my body and having a nurse scream at the top of her lungs repeatedly “stay with us, stay with us!!!!!!” she accidentally saved my life by slamming me into the ER double door frame and jolted me back into my body. I spent the next 4 months in hospitals and new doctors trying to determine what had gone wrong and why I had this pain below my ribcage at my solar plexus and through my back that was relentless. The issue was nothing was showing up in my blood work. This was a true “mystery diagnosis X”.
Again, an UCLA doctor saved my life. My new G.I. Doctor was incredible and believed me. I’d been to numerous docs that told me it was in my head and that I needed a psychiatrist. I wanted to be back at work so nothing was further from the truth. They were so rude! But he believed me particularly when he did a test called an ERCP, which puts a camera down into my pancreas. Amazingly, this reproduced and induced the same events as the first ER visit and almost killed me for a second time. In fact, he told me if I had another ERCP in my lifetime I would probably die.
He diagnosed me with chronic pancreatitis with no cure. He was so sweet about it and understood the blow this was to me. Since this blog is more about RA than pancreatitis let me wrap this part of my life up with this story.
It took me from 2002-Feb. 2007 to get through the worst of pancreatitis. I had millions of pancreatic attacks and many visits to the ER. We couldn’t get it under control and was usually on heavy painkillers like Demerol and Percoset on a daily basis. Morphine had to be used in more extreme attacks. My doc was afraid I would die at a hospital from some other illness and kept me well stocked so I could be my own ER.
I had worked solid through all of this. I run my own company serving many business clients. I hid all of these woes from them at my expense. I did not want to ever be seen as a sick person.
In 2005 the pain became out of control requiring a month long hospital stay and surgery to remove my gall bladder & appendix. Everyday became a struggle and eventually I ended up at a pain management center with dr. G. He was egocentric but progressive and told me I’d need an intrathecal pump put in. BUT I’d need a lot of psychotherapy first as a rule. I dreaded it but submitted myself with what little energy I had left to go to weekly visits. I had managed to grow my business exponentially during this time and miraculously had a very successful business. But the stress was taking its toll on me and eventually I started losing full days to sleep. By the end of 2006 this soon became being asleep 5 days a week. I was unable to leave the bed. I had a great team that ran the office, but it was becoming an unbearable situation. I had gone down to 112 pounds. I looked awful. I felt awful. The only good thing in my life that I enjoyed was Jax.
-Sasha / over and out