SON OF A …. THIS %$&*^$ HURTS!!
Even though I am a Christian and try to live my life for God now, when the nerve pain in my face flares up, that is about the only thought that is in my mind. For the first two years with this horrible condition, I was on narcotics, (along with anti seizure and anti viral medications that I take to this day) basically to save my life to keep me out of pain that might make me depressed or suicidal. I had nothing in my life but the pain and my precious dogs. Everything else fell apart. I was starting to understand the nickname of this horrible condition.
I have a condition that is subtitled “The Suicide Disease” (Trigeminal Neuralgia). Wikipedia actually has an easy to read, accurate, description of it. It is really hard to treat and destroyed my old life in many ways, yet it led me to a new life. I am finding it hard to be grateful to an illness that causes me pain almost every day. But, God has His plan. I NEVER believed that before. I didn’t like it when people said that to me after my son died. Or. when my uncle died. Or, when my aunt died. Or, when I found out I could never have another baby. Or, when my husband left me because of that, and went and immediately “found” someone to do that with, and did, just that. Good times.
But I believe it now. Even though as I type this, I am laying so my face is propped up against a heating pad, I would NEVER take my own life. Being the mother of a child who died through no fault of his own, (or anyone’s) I would never harm my relatively healthy body. That isn’t the point of this blog. Some people (about 25% of patients with this disease) who don’t have the medicine that barely works for me (most of the time) do take their lives. It is impossibly heartbreaking. I pray that all of us afflicted with this find doctors who understand our illness and don’t shun us as “pill seekers.” Drug addicts, especially those who steal medicine from people like me (yes, it has happened) have never had pain like ours. I am thankful I have a doctor who knows I am not a “pill seeker” and that since I have recurring shingles in my ear and cranial nerves, that I am not having a party. My life is about living with pain and still being grateful.
I am thankful for my wonderful husband, family and friends. It hasn’t been easy. My old Myspace readers will recall me reporting friend stealing my pain meds, leading to a doctor thinking I was a pill popper. (I NEVER TAKE MORE THAN PRESCRIBED-that is a good way to be DEAD, fast
). I lost a job I loved, a husband I once loved, a home I felt secure in. I have had family problems because they, understandably, tire of seeing and hearing me in pain and feel helpless. They lost patience with my dizziness, forgetfulness due the medicine, and the fog of the incessant facial pain. They despaired the loss of the “old Cherie.” Some friends have become distant, too. Still, other “friends” drop away after I refuse to share my medication with them. After I cheerfully tell them what doctors to go to for their “ailment” and offer to help them make an appointment, they disappear. I can see them coming a mile away, now. It’s pretty sad.
I couldn’t do what I used to do, at least not in the same way. My ex husband just fled. He was unsympathetic and had already seen me through infertility issues (and actually cited that reason on the divorce papers) and just bailed, regardless of my standing by him for nearly ten years of the incurable Ulcerative Colitis with which he struggled. I wouldn’t do anything differently. I take my vows seriously. I have never left anyone I have promised to take care of for life. The stress of his cruelty (he made fun of my balance problems and hearing loss that came with the Ramsay Hunt Syndrome that caused the “Suicide Disease.”) and desertion made it all worse. But, after everything I had endured in my life, I was not going to let some jackass ruin the rest of my life. Crying makes the symptoms worse. Laughing makes them bearable. I stopped crying eventually and looked at my life in front of me.
I thought I was doomed to have nothing but the pain and my dogs. Feeling supremely alone, (on the advice of my MD and some friends, and with my parents blessing, since they couldn’t help at the time) I packed my car and moved to a warmer place that would take me and my dogs.
Somewhere I could afford on my newly slashed income. After meeting some horrible people, and some true angels, something wonderful happened.
I started doing things for others. I was getting involved helping the shut-ins in my new little community around the holidays. I walked my beloved dogs. I got out of my own head. I made some friends. Had my heart bruised a little. Went on horrible dates. I wrote blogs about them. Writing helped me cope. Comedy and laughing still help me to this day.
Then, just when I concluded that most men out there are after one thing–I ran into a miracle. A strong, handsome man, who had never married, had no children and DID NOT WANT ANY, but loved them. In fact, he was studying to be an educator. Shortly after our first date, he was about to don a Clifford the Big Red Dog outfit for a school assignment. He could write and speak complete sentences and wasn’t a scoundrel! Well, not anymore, anyway. His friends have assured me he had his moments as a ladie’s man. I am glad that part of his life is behind him.
I couldn’t believe I met a man who understands me, takes care of me when needed and I take care of him whenever he needs me. I never thought I would laugh again. Boy, was I wrong.
Plus, the dogs approved.
I never thought I would trust a man again. But, I was sent a man who accepted me AS IS. He loves me, not just my “potential.” It took some soul searching, but I eventually concluded that if this amazing man can love me at my worst, to paraphrase a fake Marilyn Monroe quote, he deserves my best. I took one more chance.
We now have a combined family of real family and cherished friends. When I am down, they are there to delightfully distract me. Meditating in prayer helps me deal with the “mind numbing” pain. Bible study helps me put my pain in perspective. Jesus and Job had it worse.
I now live in the most peaceful place I have ever lived.
It is quiet and the pace is slower. I miss having my friends and family close by but thanks to my smartphone they are always in my pocket. Now, with Skype and video calls, we really can feel close until our next visit.
I have found a new doctor up here in the country and he is determined to help me control this pain and help restore as much of the “old Cherie” as humanly possible.My dogs loved it here when we moved. Sadly, my Yukie (the white dog pictured above) passed away suddenly in 2010. He lived his last years in a peaceful place and got to see his “mom” happy. We got “Harlan” a few months later.
One of the most surprising parts of my journey is my affinity for chickens.
I had never met a chicken before March of 2009, now I have a little flock and absolutely love raising them. I sell the few extra dozen eggs when I can to friends here in town. Their eggs make my cupcakes really special, and I give them as treats for my husband’s students.
Ironically, none of my new life would be possible, I suppose, without “The Suicide Disease.” In a way, it actually gave me a new life. I may have the “suicide disease” but I wouldn’t miss a minute of my life, just the way it is.
**This was written before my twin sister came down with the same illness, four years later. I am glad I am able to help her know what to expect. 😦