The End of the Line? Part 1

So today this journey finally began, and I have a ton of mixed emotions about going into the St. Judes’ Chronic Pain Program here in Orange County, CA. It’s a curious emotional cocktail of anxiety, hope, fear, curiosity, doubt, stress, courage, and even skepticism! Somehow I just refuse to give up hope, even when the odds for pain relief seem stacked in the wrong direction. There is in most of us an indomitable spirit that ultimately just wants to keep going, and so I ended up here!

In 2007 I had the opportunity to fly to MHNI and be an inpatient for three weeks in their chronic migraine program. It was a last ditch effort by my headache specialist, Dr. Stewart Tepper, to try and get my migraine attacks under control. While it was not the miracle I’d been hoping I did learn from it that there is so much more to managing migraine disease than just pain control. Discovering others struggling like me, learning about pain pathways, talking to a psychologist, and trying new options such as biofeedback and radiofrequency ablation opened my eyes to a whole new world.

Now, 12 years later, I not only have chronic intractable migraine again (for years I was high frequency episodic), but I also seem to have an ever increasing array of comorbid conditions or long-term medication side effects. After waiting over a year to see a highly recommended rheumatologist (that situation in itself was nearly the needle that broke the camel’s back!), I was eventually referred by him to an innovative intensive multi-disciplinary chronic pain program to see if it would help. After an introductory phone call where I was informed that in order to qualify I pretty much had to hurt all over (lol – no problem there), an exhaustive approval by my insurance company covering every type of service they offer, and three LONG in-person interviews to determine if I was “in enough pain” to qualify for the program, as well as determined enough to stay the full 8-10 weeks, I finally found myself facing a long drive, four days a week for 8-10 weeks in the hope of …. Hmmm… What? Well, something!

I thought it might be interesting to blog about this journey. What my thoughts and hopes are. The challenges of simply getting to that many appointments for two long months. Questions such as:

• Is this the end of the line?
• What if I fail in the program or rather, if the program fails me?
• What if I simply am not well enough to drive that far, that often?
• What are realistic expectations or should I just take each day as it comes?
• Is it possible to set goals when there are so many unknowns?

Delighted to discover today that the medical team has a scent-free policy (small stuff for many but HUGE for me), that they actually all talk to each other on a weekly basis (imagine that – a team of doctors who actually communicate about you!!!), & that in their opinion, finding yourself at the “end of the line” isn’t necessarily such a bad thing because really the only place you can go from there is UP! That was a novel perspective and surprisingly, a rather refreshing one. Also discovered that I was surprisingly tearful when it came to describing how pain has impacted my life, the failure of so many treatments including two of the new ones FDA approved this year, and the struggle in taking back any kind of control.

Sigh! First week’s schedule in hand – it’s clear that this will be a long week, but I’m facing it expectant to discover, learn, and explore everything that is offered. Afterall, who knows what tomorrow holds!