Post 425 wherein May whines, laments, rails, and wallows in self-pity

A couple of days ago, I sent out an email to my family and my few friends (sorry, Laurel, I realized it after I turned off the laptop), plus the women who work on the nonprofit with me. Following my pathetic message to them, I have included my response to Jolie's message of support and concern to me. It's all from unfiltered emotion, and I'll need to remember that when I read this in the future.

I know I keep complaining about how awful I feel, and I keep trying to find a simple answer when you all ask me, "Now, what is this problem again?" It's very complicated, but with some help from online sources, I think I have an easy-to-follow summary. Not only is my problem (syndrome, actually) hard to nail down, it's getting worse, spreading, and stealing what little sleep I was getting. At this moment, I would swear I have shingles again. I must admit, I am emotionally and physically exhausted from feeling beyond awful. You just have no idea. Now, before you roll your eyes and accuse me of being weak , or a whiner, or dramatic, or looking for attention, or a big baby, or a "whatever, just deal with it, May," imagine if the information below was the best that the very best doctors could come up with for you. (and you know I did my research on that!).

We live in a culture that not only values bearing illness without complaint, it's an expectation. I've been trying not to talk about it, but geez, this is wearing me down. I keep joking that I need morphine or some other narcotic, but the truth is, other than knocking me out, it wouldn't help. I'm so frustrated and discouraged. WOULD SOMEONE PLEASE JUST SHOOT ME AND PUT ME OUT OF THIS MISERY? OK, that's all. I promise I'll stop whining now! Just bear with me if I'm particularly grumpy these days.

Neuropathic pain is pain produced by a change in neurological structure or function. (The brain "software" gets rewritten.) By understanding the neuroplastic changes following nerve damage, researchers may be able to better understand the mechanism of hyperexcitability in the nervous system that is believed to cause neuropathic pain.

Neuralgia falls into two categories: central neuralgia and peripheral neuralgia (I have both). This unusual pain is thought to be linked to four possible mechanisms: ion gate malfunctions; the nerve becomes mechanically sensitive and creates an ectopic signal; cross signals between large and small fibers; and malfunction due to damage in the central processor. It is also known as “Complex Regional Pain Syndrome Type 1 and Type 2” (CRPS). CRPS Type 1 describes the condition when no clear nerve injury is present, and Type 2 describes a case when nerve damage is clear (again, I have both).

Neuralgia is a form of chronic pain and can be extremely difficult to diagnose. Postherpetic neuralgia (from shingles) is the easiest to diagnose because it follows an obvious cause. Neuralgia is a rare disease (of course it is). Women are more likely to be affected than men, and those over 50 are at the greatest risk. In some cases, multiple sclerosis is related to nerve damage, causing the pain, so doctors will likely ask about family history to help diagnose (I definitely do not have this, but I do take an MS medication). Nothing unusual can be seen in brain scans, so diagnosis is usually based on the description of the symptoms and the response to the medication or procedures.

Neuralgia is not only difficult to diagnose, but most treatments show little or no effectiveness. Treatment options include medicines, surgery, and complementary approaches. Diagnosis typically involves locating the damaged nerve by identifying missing sensory or motor function. Neuralgia is more difficult to treat than other types of pain because it does not respond well to normal pain medications. Special medications have become more specific to neuralgia and typically fall under the category of membrane stabilizing drugs or antidepressants. The antiepileptic medication Lyrica was developed specifically for neuralgia and other neuropathic pain.

High doses of anticonvulsant medicines—used to block nerve firing— and tricyclic antidepressants are generally effective in treating neuralgia. If medication fails to relieve pain or produces intolerable side effects, surgical treatment may be recommended.

Some patients choose to manage neuralgia using complementary techniques, usually in combination with drug treatment. These therapies offer varying degrees of success. Options include acupuncture (or dry needling), biofeedback, vitamin therapy, nutritional therapy, hot-cold compress, and electrical stimulation of the nerves. (I've tried the best of these, but none of these things are working for me so far. I also get two nerve block injections every two weeks.)

Sleep deprivation has also been reported as a byproduct of the pain. It is possible that there are other triggers or aggravating factors that patients need to learn to recognize to help manage their health. Bright lights, sounds, overstimulation, too much physical effort, and stress are examples of additional stimuli that can contribute to the condition.

The pain can cause nausea, so beyond the obvious need to treat the pain, it is important to be sure to try to get adequate rest and nutrition (nausea is an understatement).

Sigh. Any thoughts or suggestions? I'm so...sad. I really am seeing the best doctors in the field. I must have been just evil in a former life.

Part II

I know it's trite to use the term "unfair" in situations like this, but I do think it's some sort of cosmic mistake that after surviving the last five years and my nearly fatal struggle to make it through BP Hell, that I should then get slammed with something equally hard to manage--let alone accept.

When Dr. G, Dr. Pain, and Toni the PT kept pushing for me to join the support group, I thought, I'm doing really well on my own. I don't need to talk about my pain. I've already researched the treatment options. I don't need to compare notes.

It wasn't until I met with the group and the pain specialist that it started to dawn on me: We're all screwed and the docs want us to be part of this support group so we can navigate the Kubler-Ross paradigm together.

I still think it is unfair for me to have been cursed with bipolar disorder and all it has cost me along with the toll it continues to take. It took me a few years to bring my rage and resentment to manageable levels emotionally, and it seems that just as I was emerging from that crucible (transformed, really), this new affliction became apparent, although it was there to some degree all along.

I am angry and sad and frustrated and feeling the rage of injustice. I have met the enemy and the enemy is incurable chronic illness. Two of them. Bad ones. Torturous, complex, life-changing, soul-piercing illnesses that nobody wants to know about. The ultimate joke on me is that not only don't I look sick at all, these horrible, wholly brain-based illnesses are not fatal. They are debilitating and extremely difficult to have, but they are, supposedly, manageable. Of course, that is if I do everything according to plan and I live my life around disease management. But then again, that might not work after all, and I will just be expected to try harder to make my life work.

I've been thinking about my nervous system. Throughout my entire life, I've had a certain amount of continuing physical discomfort and hypersensitivity, although I was often waved off when I mentioned it. So many of the things that have brought me challenges are based in the nervous system, including IBS, severe cramping that has no mechanical cause, tissue inflammation, migraines, shingles, and of course, bipolar disorder, among others. Toni pointed out that all of those things plus my bad knee happen almost exclusively on the right side of my body--a clear indication of a central nervous system processing issue. I wonder if I got whacked on the right side of my head at some point when I was little.

Right now, my physical pain is bad. Really bad. I bear pain well, though, and I'm trying to just grit my teeth and go about my responsibilities. Emotionally, though, I'm reeling. I'm so angry. How can this be that I just got through the emotional process of accepting what BP was all about and what my life would and would not be like as a result, and then my central nervous system decides that BP isn't enough so it produces this neuralgia/neuropathy illness on top of the first brain malfunction.

OK, it's totally immature and self-pitying, but I'll say it: What did I do to deserve this? What did I do that was so wrong I am to be punished repeatedly?

There are hundreds of ways to lose your life, but perhaps one of the cruelest is to watch as everything you value in yourself is stripped away from you in stages, but your biological processes continue, you look no different, and you must continue on as though nothing is wrong. I'm getting it two times over, and that’s an awful lot for anyone to try to hide day in and day out. The stress of it has been bearing down hard on me, and there will be consequences.

Shingles. When I went to the doctor because I had shingles, he said that it was a wake-up call about not only the stress in my life, but something more, some message my body was trying to make known. Sure, I was exhausted and not sleeping enough and I was very stressed. Lots of people live that way every day, but they get colds and flu and passing viruses--they don't get a major eruption within the nervous system. My dear Dr. G said that when the nervous system is not in stasis it is that same nervous system that will be the first to react to internal or external stressors. It begs the question (and the question is being researched), just how much are the BP and the chronic pain syndromes part of the same etiology? The answer is: very likely, and, they probably aggravate each other quite a bit. Screwed. Definitely screwed.

Maybe my own cosmic truth is that I'm not a good person, after all, and this is my comeuppance.