Friday, December 16, 2011

On being a lab rat...

As most of you know, I am disabled. It's not one thing, or a simple problem; I refer to the list of my disabilities as "the laundry list." As my therapist said yesterday, managing my health has become my full-time job, which is a difficult place to be. Because, among other things, it means trying and managing different medications to see if any of them will help mitigate some of the problems without having side-effects that are too unbearable. Notice that I did not say, "no side effects," merely not too bad side-effects.

I became disabled in 1992, almost 20 years ago, but struggled through massage school, and 3 more years as a computer scientist, before I ended up on Social Security Disability in 1998. In that time, I also divorced my spouse, moved to California, was in a bad car accident, and played musical doctors trying to figure out why I was in such intense, constant pain.

Here's the real problem people with chronic pain face. As I look back past 1992, I can see hints and episodes of many of my conditions coming up as I grew up. For example, I've had migraine headaches since I was a small child; we only knew what they were and began to get me treatment for them when I was in my 30s. If any of you have had a migraine, you know that they are not like a tension headache, and aspirin won't do much to deal with one. Of course, I found out the hard way that I'm allergic to aspirin.

Ah, yes, that's the joy of being a lab rat. Doctors test out different medications on you to see what works. Parents do that with their children; my Mom used to make me take baby aspirin when I had headaches, and then I would be violently ill to my stomach for hours. The side effects/sensitivity/allergy was worse than the disease—almost. I've found out since then that I'm allergic to codeine (broken tail bone), morphine (given for a headache in the hospital), percodan (headache, Mom), paregoric (headache, Mom, ditto), Demerol (back pain), Darvon (back pain), sulfa (teenage acne), and prednisone (sinus infection). Sheesh. I have to remember the list of what we've tried for pain so that we can come up with something I can take when I need it. And when I find something that doesn't work, the consequences are usually quite nasty until I can get them to wear off.

I'm also on psychological medications because of my chronic, clinical depression, which, of course, is also why I see a therapist regularly. I've been depressed to one degree or another since I was a child; I can remember a clear episode as early as fourth grade, and have seen pictures to suggest I was depressed first around 3 years of age. My brain doesn't make the right amounts of serotonin and norepinephrine, probably due to stress from abuse when I was a baby, something that tends to set up a cascade of health problems later in life. I also likely inherited my depressive tendencies from my mother, who had her own mental health issues throughout her life. The difference is that I sought and received treatment for mine, and I'm thankful that I did.

But not all antidepressants work the same way, even within the same class of drugs. It's like being Goldilocks: some make you sleep, some make you hyper, some don't work at all, and occasionally, one will be "just right." The problem is you won't know until you try them what effect they will have, and then they only continue being effective for a few years before your body no longer responds to them. Yes, they also have side-effects, many of them oppressive, but they're still not as bad as being mired in a depression.

Add chronic pain, which makes it very difficult to sleep deeply, which depletes the serotonin and norepinephrine in your brain, and bingo—you're chronically depressed. Stress of any kind makes it worse. So how do you live without stress? The answer is that you don't; you adapt ways to compensate, and occasionally you take additional medications when nothing else will work. I take two medications to help me sleep on a nightly basis, and they do work—they keep me asleep once I manage to get there. Nothing helps me actually get to sleep; my sleep patterns are too thoroughly disturbed from years of abuse and fear. I talk myself down on a nightly basis.

The pain can also raise your blood pressure, surprise, surprise. And abuse early in life such as I went through can do weird things to your entire stress response system in the brain, with varied consequences. For example, I have an incredibly rapid heart rate, averaging between 90 and 120 beats per minute resting. I joke that I can sneeze and do aerobic exercise. Even when I was running regularly and in the best shape of my life, I could only get down into the mid-80s. But my doctor wants to treat that as well as the high blood pressure, so I'm on medication for that, too. Getting my pain levels down actually does more good than the medications, but what can I say?

I'm on two specialized medications for specific conditions: Lyrica for fibromyalgia and Trileptal for trigeminal neuralgia (TN). TN is fun stuff; it involves intense nerve pain in the side of the face, running along the three branches of the trigeminal nerve to the corner of the eye, to the muscles of the cheek, and to the corner of the mouth. The last TN headache I had lasted 5 1/2 weeks until we got me on the right medication to break the pattern. Ugh!

I was talking with the doctor last night about how I get migraines on the right side of my head, feeling like a stabbing pain above my right eye. I get TN headaches on the left side of my face, and I get a dull, pounding tension-style headache at the back of my head and up my scalp regularly. I'd assumed the latter was a tension headache until this latest episode of horror: the past few days I've been disoriented, fainting, and had a hard time talking, even when I've been on supplemental oxygen, and we think I may have had what's known as an "acephalgia migraine." That means that I had a blood-flow problem to my brain that wasn't triggering the usual intense pain, but was triggering other neurological problems.

It's such fun, because I was diagnosed in August with a blocked artery in my brain and several areas of brain damage, which we're trying to sort out the hard way. I've been trying to get in to see an neurologist ever since the diagnosis, and the first appointment I could get was in January in San Francisco. No one else within a 300-mile radius would take me.

My doctor checked to be sure I hadn't had a stroke, for which I'm eternally thankful I did not. So we went back and forth on what to try; at this point, I've learned a great deal about all of the conditions that I suffer and about neurology simply in self-defense. My doctor is delighted that I'm an active participant in our attempts to figure things out. He finds my knowledge refreshing and helpful.

Ultimately, last night we decided to try something outside the box, since the problem I was having was outside the box, too. He prescribed a migraine medicine for me that works by opening up the blood vessels in the brain, hoping that it would relieve my symptoms. I've taken it before for actual migraines, but it has some really intense and rather painful side-effects. Still, anything had to be better than being sleepy, groggy, faint, and unable to talk coherently—I was slurring words like I was three sheets to the wind without any of the pleasure of having gotten drunk!

Fortunately, it seems to have worked. I'm noticeably better today, although I'm keeping a close eye on my physical behavior. I have additional doses to take if things take a turn for the worse again. We experimented, and this time things worked. I have no idea what the experiments will be like when I finally get to see the neurologist in January. Even my doctor is worried.

Day to day, this lab rat does a check-in to see what's going on and what I will be able to do today. It's a constant struggle; some days are bad, some days are good, and most are a combination. There are many things I miss being able to do, and I have to let that go because it only fires up the depression. I have to try to live in the moment and be with my body wherever it is now. And I constantly fall back on my best and most effective medicine—laughter. Having a sharp, continuous sense of humor about everything is essential to staying sane and managing a lot of the difficulty. Now you know.

Spiritual growth is not just about invisible, esoteric things. It is also about being able to face what is happening in the physical plane with realistic expectations, to deal with what is happening without torturing yourself with "might have beens," and getting on with your life. I appreciate the efforts of self-described healers, who always have immediate suggestions for me like "have you tried Reiki," "have you tried herbal medicines," "have you tried acupuncture," etc. Um, yeah. I have tried many or all of those things, and they didn't work, for me. Or only worked temporarily, or only worked while I had money to pay for them. I don't like dealing with so many medications, but it is what it is. I can afford them, and they work, more or less. Healers would be so much more helpful if they didn't rush to judgment about what I need from them—if I need anything at all, it is compassion and respect! But I've learned to have patience, too, because I experience the same need to rush to help people who are hurting, and I understand the impulse is innate to those who feel the need to heal.

I've come to terms with what I'm going through, and the whys and wherefores of it. It is part of my path this lifetime to struggle with my body; I spent most of my first 40 years living life as an out-of-body experience to avoid my abusers, and I'm paying for that. Learning to be in a physical body is a big part of why we incarnate as human beings in the first place. If we didn't need to learn about physicality, we wouldn't have incarnated as a physical being, now would we?

My path is unlike that of many of you, but I'm sharing it to help you have compassion for those others of us who do. Healing is more than rushing to help; it must encompass understanding. Prayers are always welcome, they do no harm and often help. But remember: there is nothing wrong with being a lab rat when that's what is necessary for the rat to survive!

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