when life gets still more complicated

So I know I've been pretty self-involved in my blog here, but hey, it is about my life, right? well, there is more to my life than just me and my pain in the head. In fact things got still more complicated last night for me and my life.

I've considered myself incredibly blessed this year by having wonderful people around me including my family, friends and colleagues. It's been a bumpy road, to say the least. Of course my finace, Gabe, has gone above and beyond the call of duty to take great care of me and drive me to appointments, hold my hand when I'm scared, be by my side. My sister-in-law has also been increadibly supportive, not to mention Annette and my Bonas girls and my Elmira crew and the S-G peeps. My dad has also been amazing, in his own fatherly way. At times he was frustrating because he didn't seem to understand what I was going through, but then, who did. But he took time off work and sat beside me as I visited doctors and recovered from surgeries and he tried to make things as easy on me as he could. I am so lucky to have a father like him.

Yesterday, my father was diagnosed with cancer. Yep. Cancer. I don't think there is a single word in the world I hate or fear more than Cancer (yes I hate the MF word, but I don't fear it). When he told me, my stomach fell and tears immediately came to my eyes. I lost three grandparents to cancer. My mother died just over four years ago from breast cancer. For her they found it much too late. She was diagnosed on Tuesday and dead on Sunday. It was horrible, fast, and brutal to all of us, including her, though I think she knew long before all of us that it was her time and this was her way. I've worked hard to forgive and accept, but I still miss her every day.

Now, my father has cancer. Minimally, he says. They caught it early, he says. In fact, it's so early that they don't want to do anything. Let me repeat that. It's so early that they don't want to do anything. Can you hear my outrage. My anger. My frustration. How can you tell me that you find one parent's cancer too late to do anything to save her and then you find my other parent's cancer too early to do anything!

Yes, I am thankful that they found the cancer. Thankful that it's so early. But DO SOMETHING. The thought of letting those dangerous, evil cells grow any bigger, envelop any more of my father's precious body, do any more damage than they have just by being present is unacceptable. Unacceptable.

That's a word I use quite frequently to describe our medical care these days. Unacceptable. We are humans. Doctors treat merely symptoms. They don't look at us as people, people connected with a web of others who rely upon us, respect us, love us and want the best for us. They are too busy looking for solutions in the wrong way. It's unacceptable. Doctors must see us as the humans we are - the interconnected web of life that we share.

It's unacceptable to me that my father's doctors have told him to change his diet and come back in six months for another biopsy. A lot can happen in six months. A lot can happen in a month, a day. It's unacceptable.

Unacceptable.

needle in a haystack: part two

Ok, so I had my second appointment with the acupuncturist yesterday ... and it sucked. I hate needles to begin with but the first round wasn't so bad, but this time she put a needle in my affected cheek! I thought I'd cry. Then she connected the needle in my cheek to the needle in my right knee and said that that would help channel the pain from my face to my knee ... I didn't buy it. The needle in my cheek felt like all it was doing was waking up the lightning attacks in my face and making it extremely painful for me.
I don't know why, but I signed up for another session. As much as this last visit hurt, I still have hope that it's going to work ... that somehow my face is going to get better ... that somehow this whole past year of pain and doctors and frustrations will go away or even disappear entirely ... I can have hopes, right?

needle in a haystack

Finding a solution for Trigeminal Neuralgia is a bit like searching for a needle in a haystack, which is exactly what I have done. Well, I've gone looking for needles anyway. Yesterday I began acupuncture treatment in an attempt to find some relief from the endless pain I've experienced since January. It seems I've tried just about everything possible - from two microvascular decompression craniotomies (jargon for brain surgeries) to seeing a faith healer and even a homeopathic healer. (I know I have a lot of catching up to do, so look for future posts on the treatments I've tried before.) I've also tried just about every medication imaginable for this disorder. I shudder to think what I've spent this past year in medication alone - and I have health insurance!

The state of our medical treatment for patients with nervous system disorders is unacceptable. There is no medication specifically designed to treat the nerve pain created by TN. Doctors give us anti-convulsants and anti-depressants and hope for the best. For me nothing has worked. The anti-depressants probably help me cope with infuriating pain that makes me believe at times that I am going crazy, but it doesn't really make the days any easier. And as for the anti-convulsants, I could take sugar pills and have just as much affect.

So that is what led to the needles. I have reached the end of my rope with traditional medicine and have decided to give western medicine a spin. Yesterday I explained my condition to a certified acupuncturist and she proceeded to put needles in my feet, hands, elbows and neck. It was strange. I hate needles, so I was very nervous, but I only felt some of the needles when she placed them on my body. Some areas tingled, others grew warm, so just felt irritated. I laid with the needles in my body for about a half hour. When she took them out and I stood up, I was dizzy, but otherwise I felt nothing.

Today has been a better day for me pain wise, perhaps even the best day I've had in weeks, but I will have to wait to see how my body responds to the treatment. I am scheduled for another session on Monday.

Here's hoping my needle in the haystack finally helps me deal with this painful disorder.

When life changes

My life changed unexpectedly on January 7, 2006 when I woke up feeling a little sick - like I was getting a sinus infection. As the day progressed, my pain worsened. I began to feel like I'd been hit across the right side of my face with a baseball bat. Then it got worse. The attacks began. Like a heated ice pick shooting into my face or a strike of lightning slicing through the skin, the right side of my face from below my eye to my lower jaw became a war zone of pain so intense I couldn't speak or even move. I had no idea what was happening to me. It was one of the scariest days in my life.

Finally after about a week on high-powered pain killers that provided no relief, my doctor diagnosed me with Trigeminal Neuralgia, a problem with the fifth cranial nerve that causes excruciating pain, usually on one side of the face.

Thus began my journey through several doctors, two brain surgeries and the continuing search for pain relief.

My blog is about nine months late in sharing all my experiences with this disorder, but I hope to share my experiences here on this blog, and maybe even some of the other stuff going on in my life, in hopes that others can relate and maybe even learn from what I've endured and explored.

Read on to learn more about the challenges of living a life with TN.