Wednesday, April 19, 2023

Do You Feel Lucky, Punk? (Spoiler Alert: I DO!)

Eight years ago, I was in severe pain. My joints hurt so badly that sleeping through the night was impossible, and carrying my laptop bag into and opening the heavy doors at my office were so excruciating I was often on the verge of tears. My husband and daughter had to help dress me in the morning, as I was not able to accomplish actions as simple as putting on a bra or brushing my hair. (This was pre-COVID, back when those things were considered fairly important.)

And I have a pretty high tolerance for pain – I lived through 80s fashions and a couple of Seth Rogen movies.

As you may imagine, this was pretty fucking depressing. Adding to it, this all started at the same time I joined a new company and had a very stressful job. In an attempt to help, my husband suggested I start working with a personal trainer, because he knew I needed to prioritize my health and also assumed (correctly) this would help manage the stress and (incorrectly) the pain. And although I found the idea intimidating, he signed me up for some training sessions and I agreed to try it.

Thanks to three amazing trainers with whom I worked, I fell in love with training and weightlifting. They worked around my limitations and made the training sessions fun, so it was the one thing I truly looked forward to three days a week. When you are in that much pain, it is very lonely – there was so much I wasn’t able to do and so many times I stayed home feeling sorry for myself, so this also had the added benefit of getting me out and around other people. (This became a habit: I still weight train 3-4 times a week. I love being strong and there have even been times that thanks to training, I am able to see an ab. One. Singular. And fleetingly.)

In an attempt to rule out possible irritants, I also stopped ingesting anything I thought might be contributing to the joint pain, including gluten, alcohol, tomatoes, other nightshade vegetables, and processed foods. As a result, I was very thin. Also as a result, I had more people compliment me on my appearance than any other time in my life. Forget Ozempic, if you want to look svelte, simply have your body attack itself!

I did not share my condition with many people as I don’t think most people find ailments an interesting topic of conversation, which was confirmed when I confided in two friends who were close to me how much pain I was in and how frustrated I was that nothing was helping me feel better. One of them replied, “Sucks getting old,” and the other countered with how another person she knew had it much worse.

Don’t be either of these people.

It took three years to find a diagnosis for what was causing my pain – and I’ve lost count of how many doctors I visited and how many different medications I tried - none of which were the least bit helpful. Thanks to good medical insurance, persistence, and the help of friends like Meredith, who somehow finagled an impossible-to-get appointment with a top specialist in NYC, I eventually found my way to gastroenterologist, Dr. Scudera, after being misdiagnosed with rheumatoid arthritis, getting no pain relief, and seeing alarmingly worse bloodwork results.

Dr. Scudera scheduled a liver biopsy to confirm his suspicion of autoimmune hepatitis. (There are only 100,000-200,000 cases of this a year, which explains why it was so hard to diagnose. Particularly because the symptoms can vary widely from person to person.) This-lifesaving-physician-to-whom-I-will-be-forever-indebted prescribed the correct medication, and I was pain-free in about two days and have remained so ever since. The liver biopsy results from that test in September 2017 were a STAGE 2, GRADE 4, as measured on the Batts-Ludwig scale below:

I’m not sure if I was just so relieved to have a diagnosis that I didn’t focus on this too much at the time, but looking back now, I’m a little terrified by how serious it was. I’m not exaggerating when I say that if this had been left untreated, I absolutely could have gone into liver failure and died.

For the past five years, I have gradually decreased the medication dosage as the bloodwork numbers improved, with the ultimate goal of stopping the medication altogether. To ensure I was ready to discontinue the medication, I needed a follow-up liver biopsy. After correcting an initial snafu of the hospital mistakenly scheduling a LUNG biopsy (and my friend, Kath, sending a package of Sharpies so I could draw arrows all over my body pointing to my liver as an added assist to the medical team) I had the biopsy a couple of weeks ago.

I just got the results, and they are exactly what I and my doctor hoped for – I am 100% in remission with the best possible numbers and can discontinue taking medication. That’s a GRADE 0, STAGE 0 on the Batts-Ludwig scale, baby! You know it’s a good day when your doctor is just as giddy as you are when he shares the news. (This doctor is Dr. Scudera's successor. Dr. Scudera retired a couple of years ago, and his successor is also a great doctor who spends a considerable amount of time talking to me and shares my "let's not take medicine if at all possible" philosophy.) I feel exceptionally lucky to have come across these amazing doctors.  

This could come back – one does not “heal from” autoimmune hepatitis. However, I now know what to look for and will still get bloodwork done regularly so if anything looks concerning, I will go back on medication to mitigate it.

*Not a funny post, but probably the one I've most enjoyed writing! 


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