From whence I’ve come

I was surprised by the number of comments to yesterday’s post about Trigeminal Neuralgia. A reader posted it on the TNA Facial Pain Association Facebook site, which brought new readers to my blog. I read heartbreaking stories and learned about what people suffer with this terrible disorder.

A couple of people said they tried alternative therapies, but were still on the drug. Others said they experienced life-threatening side effects from the drug. And a couple of people suggested that I wasn’t very smart about my choice not to take the drug.

That’s because they do not know from whence I come.

I have a lifetime of experience trying to find a balance between what allopathic medicine has to offer and what alternative therapies have to offer.

The TN diagnosis is not the first I’ve had to deal with.

Today I received another diagnosis. This one four years overdue. After five podiatrists, four physical therapists, a nerve conduction test, three MRI’s, two bone scans, and numerous x-rays, a simple ultrasound revealed a peroneal tendon tear in my right ankle and cuboid syndrome in the cuboid joint, something I’ve suspected all along, but no one could confirm.

Two years ago this same podiatrist said I had arthritis. I’ve given up walking and hiking, two of my loves. I’ve been depressed and hopeless, not because I’m depressed and hopeless, but because no one could help me find the answer and I couldn’t walk around the block, let alone across the living room, without pain. And now the same syndrome is developing in the left ankle and cuboid.

A year ago, the same doctor who gave me Monday’s TN diagnosis suggested I take an anti-depressant because I had what he referred to as a “chronic pain cycle,” as if it was in my head, and I needed “to get on with my life.”  He never stopped to consider that I might have a reason for the pain.

I knew all along there was a reason. But I was the only one.

I didn’t give up. I went to a new podiatrist who also didn’t know what was wrong, but she was willing to refer me to a physical therapist of my choice with Therapeutic Associates. He hung in with me and kept looking for answers. He’s encouraged me to do strengthening exercises and has done hands-on physical therapy. He’s the one who arranged for me to go back to the podiatrist for the ultrasound—and met me there.

We will find a way to heal this pain. The podiatrist said surgery isn’t a good option because if a person doesn’t have tendonitis before surgery, they will after. At least he was honest. For a change.

But my journey with doctors didn’t start four years ago.

When I was 18 and about to be married, my fiancé and I agreed I would work while he got his college degree. That meant birth control. In the 60s doctors prescribed 5 mg doses instead of .5 mg doses given today. I went off the pill when I was 22, expecting to get pregnant. I didn’t ovulate.  A doctor gave me Clomid, a drug to promote ovulation. That didn’t work. USC medical doctors suggested Pergonal, a drug that can cause a litter. I refused, knowing I wasn’t equipped for more than one at a time.  At Utah medical center, I was told to have an ovarian section. I still don’t know what that means, except cutting.

Six years later and a few years after my divorce I was told I was at risk for intrauterine cancer because I wasn’t having periods. I cried for two hours and a month later had my first period in six years. They remained irregular. But at that point I decided that if God wanted me to have a baby, I’d have a baby. But without medical intervention. Thirteen years after I went off the pill, and seven years after my divorce, I dropped a random egg, who, along with a “random” sperm, (that doesn’t mean I was sleeping around…it means I was rarely spending time with my boyfriend) is the son for whom I’m deeply grateful.

For years before I became pregnant–and even after–I blamed doctors for misleading me about the pill, and blamed them for not knowing how to help me. I prayed and did counseling and grieved for those lost babies. It wasn’t as if I had miscarriages or stillbirths I could mourn, but their absence was a loss.

But it was my choice to take the pill. My choice to forego drugs and surgeries, which might have helped me have a baby.

Instead, I decided to trust God and the body He had given me to heal. He’s had to do some heart work as well.

That doesn’t mean I would recommend other infertile couples wait it out. That was simply my choice.

My experience with the doctors also led me to become a midwife and health educator. I helped women and their families have choice about the birth they had either been denied before or the birth they envisioned. In 1966, I stopped doing births for a variety of reasons, but the passion for medical consumers to have choice and to exercise their intuition and body-knowledge remains strong.

I have experienced other medical challenges, each giving me fodder for my position. However, that position does not mean I won’t seek medical help when needed. I had a tumor on my thyroid removed in 2004 and take thyroid medication daily. I had unsettling heart palpitations after our trip to California to bury mom’s ashes. One evening I went to the emergency room, where kind and supportive medical staff reassured me I was having benign premature heart beats. I declined the beta blockers, later had a stress test, and went to an acupuncturist. She prescribed GABA and Glycine, two amino acids and did needles. The palpitations are gone.

I made choices for my good based on my experiences, utilizing the best of both worlds, traditional and alternative.

So if anyone tells me it’s not smart to take a drug that’s offered five minutes after I’ve walked in the door, I’d say, think again. I know better.


The dam is leaking.

Two days ago I was diagnosed with trigeminal neuralgia. The trigeminal nerve is spasming causing shock-like pain behind and in my ear. It’s not a lightweight diagnosis, nor is the medication prescribed to treat it. The drug can cause all the normal side effects, like drowsiness, nausea, vomiting and diarrhea, and it can mess with a person’s bone marrow. TN is what people with MS have, or people with a tumor. I have neither.

I won’t be taking the drug. I suppose there’s a never-say-never clause because it hurts like crazy. I cry out in pain at random moments, when I smile, cough, touch my ear–and when I get the electric shock in front of someone, it’s disconcerting.

I went to my chiropractor. He said my neck was tight and my jaw was out. He adjusted both and said he was sure that would help. It did, but hasn’t cured it.

I have to ask the questions. Why is my neck so tight? Why am I grinding my teeth at night? What am I angry or upset about? What am I not saying?

And, what is the best way to treat this?

Those are the questions I need to ask before I take a drug that could compromise my bone marrow.

My chiropractor told me a story.

“I started taking anti-anxiety drugs a few years back. Then they said I needed a drug to lower my triglycerides, then a thyroid drug, then a blood pressure drug. Until I was taking six different medications. And then I got it,” he said. “I’m taking too many drugs.”

He went off all the drugs, except half his blood pressure medication.

“I feel so much better,” he said. “I can feel my hands now.”

That’s good, I thought, since you’re adjusting my jaw and neck!!

Medicines do save lives. They do have a place. But choosing a drug is like playing Russian Roulette.

“Doctors are great mechanics,” my brothers says. “They know what to do when the heart fails, or a kidney needs replacing. But why do you think they call it a medical practice?” he says.

There’s a lot they don’t know about healing the body, which places us, the consumer, in the position of knowing what we need for our own body.We trust them to give us their best advice and then we explore. We get second opinions, not just from mainstream medical practitioners, but from chiropractors, naturopaths, acupuncturists, body and energy workers, like Reiki masters and massage therapists, and counselors. We do our research. We listen to our body. We ask it what is going on…and expect an answer.

I’m reading a book, “No Enemies Within, A Creative Process for Discovering What’s Right about What’s Wrong, by Dawna Markova.” Markova had been diagnosed with terminal cancer more than 15 years ago. She set about the task to heal herself, but kept working with the oncologist.

When it became obvious I wasn’t going to die immediately, as he [her oncologist of a couple of years] had predicted, I waited for him to ask me what I was doing to heal myself. He never did. My check-ups got further and further apart. Finally, I was only going into New York once every six months. We greeted each other the same way each time: I’d ask, “Are you still alive?” and  he’d say, “Sure am. Are you still alive?” I  had been trained in avoidance and denial at an early age, but this man was a pro.

Finally, I could resist no longer. I had to ask. “Tell me, Dr. Stethococus, since you said that no one who was challenged with this kind of cancer has ever survived, why haven’t you asked me what I am doing to make it?”

He swiveled in his maroon leather chair and looked out the window. The lines in his cheeks were deep grooves. His silvery eyebrows hung down over his eyes. The sill was covered with gold framed pictures of his children and grandchildren. He turned back, stood up, and began to pace, his hands stuffed into the pockets of his white coat like discarded tissues. He steps were hesitant, unconscious. His words finally came when he was walking away from me. “All my patients die, you see. I’m an old man now. I’ll retire soon.”

He ran out of space, turned to the left as if on a parade ground, and walked silent to a small mahogany table in the corner. His pipes were neatly displayed in a rack. He picked up the closest one, intricately carved and mellowed. I’m not even sure he was aware he was holding it, as [he continued]. “I went into medicine to save lives, you see?” He faced me directly, his eyes swimming, his words stretching across the room. “If I knew what you’ve done, it would mean there may  have been something more I could have done to help my other patients. I’m an old man. I’m going to retire soon. I don’t think I could live with that. Can you understand?”

Markova’s story is a testimony to the remarkable and willful denial of those in our mainstream medical system to acknowledge that there might be another way.

A caveat. Markova wrote her book in 1994 and she talks about having cancer 15 years prior. But the principals and the principles remain the same. We continue with a downstream model of healthcare, treating disease downstream, instead of treating the cause upstream. The dam is leaking. And I’m ranting.