Real Talk About Being Your Own Health Advocate

I know I have posted a lot about health – but I wanted to offer some context, provide an update – and maybe in doing so, give some hope to folks who may be struggling with their own health challenges.

Three years ago, I started having unexplainable stomach issues – consistent pain and discomfort. The GI ruled out all the serious stuff and diagnosed me with IBS (which I guess is the thing that you get diagnosed with when they can’t find anything else). We treated the IBS for about a year – changed my diet, worked with a nutritionist, took various meds, lost weight, saw a therapist to deal with pain – but didn’t see any major improvements. I sensed something was still very wrong. In hindsight I don’t even think it was IBS.

So next stop - off to see a pain specialist at the University of Miami, who, surprisingly, was able to quickly diagnose me with a rare and often undiagnosed or misdiagnosed condition called ACNES (anterior cutaneous nerve entrapment syndrome) – basically I had a set of damaged nerves trapped in my abdominal wall. This condition happens to 1/1500 people. A diagnosis, that’s a start!

Another 18 months of pain though, intermittently improved by cortisone shots, various meds, radio frequency ablations, hypnotherapy, massage, online support group – but these only offered temporary relief. Vacations ruined, activities curtailed, friends bored.

During this time, I did extensive research on alternative treatments including spinal cord stimulators and pain pumps – scary stuff – and surgery to remove the damaged nerves.

Ultimately, I decide to find a surgeon who can perform the nerve removal – and find a specialist in St. Louis, who thinks I am a good candidate for the procedure, called a neurectomy.

Two trips to St. Louis, one for testing, and one for the surgery.

Surgery is successful – no more pain in stomach.

However, and this is about 6 months ago, overlapping with when I have surgery, I start to have terrible back pain and side pain. I am confused. Is this referred pain from nerve surgery? WTF. Did the surgery not actually work?

So I start using a TENS machine, heating pads, ice, applying lidocaine, seeing a chiropractor, physical therapists, somatic healers, posture specialists, acupuncturists. Again, WTF. Tylenol, Motrin. Not really getting any better. Friends suggest that maybe I have a weak back because of so much sitting around while I was recovering from the nerve surgery. Is that it?

I am now getting even sicker, sometimes vomiting because the pain is so bad.

A few weeks ago I am in such intense pain that I land in the Emergency Room.

Tests show that it is kidney stones – not just one but three. One is passing, one passed – and one so big it is obstructing my kidney and has to be operated on. Probably has been there for a very long time.

Is this the reason for all the back and side pain for so many months? Is it possible that once these stones are removed I will be FINALLY free from pain after 3 years?

Surgery a week ago, stent and all – with some minor complications and a lot of pain – but the stones are now gone. And I do truly believe that this pain saga is finally over. No stomach pain, no back or side pain.

I have never in my life dealt with the intense pain I have experienced over the past few years. And there have been some very dark nights of the soul, questioning if I could continue to tolerate this kind of pain, and if there would ever be an end to it.

I am a warrior. It has been hard, extremely hard. It has taxed my relationship, and at times, I am the person I never thought I would be – a walking complaint about my health.

But I am making it through to the other side. By next week I believe I will be completely healed from a difficult surgery – and back to being the Alan I was. In fact, a better version: stronger, more grateful, empathetic, optimistic, purpose-driven.

Health is now my number one priority.

Without it I have nothing.

So I have become my own best advocate (even with a doctor husband!) – and I am proud of myself for my resilience and strength.

I know many of you deal with far worse conditions than this – and more pain, even chronic pain. Pain sucks.

Thanks for reading! And I hope this maybe helps even one person.