Rocephin and Eat, Pray, Love...

View from my recliner in the den, where I spent a lot of time during the Year of the Rocephin.

Did the Rocephin help? 


I've never really answered this question in my blog, partly because the reality is that I did not see any significant improvements from the Year of the Rocephin.


I do have much less neck pain. I slept better while I was on the Rocephin. And I had a lot of improvement in my Diabetes Insipidus-type symptoms. I did not have what we had most hoped for: an improvement in my ANS issues, especially my ability to sit, stand, and have less autonomic instability overall. 


Since stopping the Rocephin, my sleep reverted to being extremely problematic and the Diabetes Insipidus-type symptoms returned. Dr. Complex feels that the DI symptoms stopped because the Rocephin had an effect on my brain that reduced the symptoms, but it did not deal with the underlying issue. 


When I first met Dr. Complex he asked me what changes, if any, I had noticed while on the Rocephin. As I described the small changes, he said: If I was going to put myself through that sort of treatment, we want to see more than just a couple of small changes. We want significant changes. He has expressed sympathy and frustration for me.


On top of not seeing significant improvement from the Rocephin (and having no idea if I killed off a bunch of Lyme spirochetes or not), I'm also now dealing with a lot of collateral damage and much more deconditioning than I started with before I started the Rocephin.


I went into the treatment with my eyes wide open. I knew that it might not work. I knew that it was a risk. I tried very hard to make the best of the Year of the Pajama. I tried very hard not to have any expectations.


Still, I started the Rocephin right before my 34th birthday, so I focused on 35 being a new beginning and a celebration of feeling better. I often dreamed that I would feel well enough to have a lunch with my closest girlfriends from near and far. I bought the Joshua Bell tickets hoping I'd feel a lot better than I do. 


I don't regret my decision. Trying to treat Lyme disease can be a total crapshoot, and I made the best decision I could have with the tools available to me at that time. For many, Rocephin works amazingly well and many Lyme patients would give anything to have access to the treatment I received. What's so incredibly frustrating is that what works for one patient doesn't always work for another, and finding what does work is often based on trial and error. That's just the reality of where we are at scientifically in how to treat this illness.


As I move farther away from the Rocephin and my body has had time to find a new baseline, it has become very clear that the treatment wasn't very effective, if at all. 


Despite trying desperately not to have any expectations for how I would feel, I am incredibly disappointed--okay, devastated--that I put myself through a year of absolute hell only to still be this sick, and starting all over with a new treatment.  Along the the physical collateral damage, I've been dealing with a lot of emotional collateral damage.


The combination of realizing that the Rocephin didn't work and Mom's heart attack has amplified all of my feelings about life and how to live it well given this illness. I am seriously having an existential crisis! :P Before I even stopped the Rocephin, I had already planned my next step: to see Dr. Complex. So, I immediately went from one treatment protocol to a new and different one. Our basement flooded. Mom had a heart attack and other complicating health issues to follow. Neither of us has had a chance to even process what has happened. Until now. And it's been hitting me like a Mack truck!




When I started the Rocephin, I considered it an opportunity to take some time to truly 'be still'. I thought I'd 'get Zen and all that', watch lots of good movies, listen to all of those books I wanted to, learn to meditate and take time to pray. I was going to come out of the Year of the Pajama like Elizabeth Gilbert at the end of Eat, Pray, Love! Seriously, I do not know what I was thinking?! The reality was that I didn't have energy for anything other than absolute day to day survival and finding some way to 'get through' the hell that so many days felt like.


I guess the Eat, Pray, Love journey waited to start until after the Year of the Pajama? Except I haven't gotten to go to Italy. Hmmm....


Because of the demands of my own new treatments, Mom's many health issues, a lot of medical appointments, as well as the emotions I've been feeling, I've been unable to do email at all lately. (I absolutely hate this, and hate not being able to keep up with my loved ones.) 


I always feel a bit of trepidation when I blog openly about the my chronic illness experience, but I also know that I cannot sit in pain silently. I also know that energy-wise, blogging is my only way of staying in touch. So, I hope over the next couple of weeks, to be transparent and honest about what I am feeling.


Thank you for your continued Love and Patience.  Lisa had NO idea what light she provided in my darkness the night of the Joshua Bell concert!




Blessings,


Emily