Liver with Lyme sauce

I have been away for a while, with quite a lot going on. Where to begin? I am not sure I remember where it all started.

About 6 weeks ago I got sick, I had some chills, fever and general 'I feel like crap'. I suspected I was having Crohn's disease symptoms, and had already made an appointment with a new gastroenterologist for just a few days later. By the time the morning of the appointment rolled around, I felt so bad that I skipped the office and went to the emergency room. This was a fortunate decision. I had the usual lab work done, and a CT of my tummy to check it out. The CT was good, but the lab work showed some liver abnormalities. I have had abnormal results before, from the disease itself or from one medication or another, but these were somehow different. I was seen by the partner of the doctor I was to see later that day in the office. He gave me far more info than I could handle at the time on what could be happening and scheduled some "fun" tests for the following week. You know, cameras, orifices, that sort of thing. What he discovered was a pleasant sounding illness called Primary Sclerosing Cholangitis. I know! Sounds horrible, much less pronounceable. In the time since I received this news, I have gone from thinking of how to say good bye to my family before I die young of liver disease (trust me, don't Google it!), to learning how I am going to live with it for many years to come. I know there will be challenges, but I will be ready.

That wasn't enough however. No, I needed more.

Two weeks ago I got some back pain. I thought I had overdone it yet again. It got worse and worse. I saw my doctor, he gave me meds and orders to return if it did not improve. The improvement did not come, so I went to the emergency room because naturally my breaking point was on the weekend. They did some further testing, another cat scan, lab work, etc. There was nothing to indicate anything other than a really bad sprain of my back. (By the way, my liver labs were all normal that day, treatment is already working!) So the next day was Monday. By Monday night, I knew something was very wrong. I have had four babies/zero epidurals. I have had two surgeries. And I had never in my life been in so much pain.

Pat took me back to the emergency room. As we were waiting for some basic lab work, Pat noticed one side of my face was starting to droop. The doctor asked me to perform some stupid human tricks, and I failed them. Off to do a CT of the head. Thank God there was no stroke, as that was our first thought. The next step was a spinal tap. BINGO! Tell her what she's won! Meningitis folks. At this point, all I truly cared about was the happy juice they were going to pour into me at any moment. They did, and I loved it, loved it all the way to where I would spend the next five days. Upstairs.

The next morning, my newest doctor came in to tell me the spinal fluid shows I have Lyme disease, and the blood work would later verify it. Being the glass-half-full type of person I am (or at least try to be), I said....

"YOU HAVE GOT TO BE F***ING KIDDING ME!"

He wasn't. But he did laugh. With me I think. I hope.

I stayed until Saturday. I am on the mend, slowly but surely. The "fun" thing about all of this (can't you just feel the sarcasm?) has been the Bells Palsy. I resisted the urge to have buttons or shirts made up with some reference to the wonders of Botox, file that one in the coulda-shoulda folder. It is slowly fading as well. I have a lovely collection of medications, and other ones to remedy me from the first ones.

I have known for a long time how blessed I am, and in case I ever forget, I know I will be reminded frequently. If I had not gone to the emergency room the first time, I may have ridden out what I thought may be the flu and not yet know I have a progressive disease I could be treating. Going in for a routine GI check up, the other doctor could easily have suspected what I did, the flu. And while I do not count meningitis and Lyme disease as a blessing, (though deep down I know they somehow are and I am not yet privy to how) I have been so well cared for by all involved. I had the best staff at the hospital, I have had friends bring me food, drive my kids around, bring babies to visit me and cheer me up, and my family has all been amazing at making sure I do absolutely nothing for over a week now.

My message to everyone- thank God for everything you have and do not have...and check yourself daily for ticks!