It has been a long road with lots of doctors and lots of traditional and alternative therapies and we finally know what is going on with my head.
The cheering picture isn’t because I am happy I have this but rather I am happy to finally know what is going on. I have Occipital Neuralgia of the lesser and minor nerve; my Trigeminal Nerve is also affected, and I also have Chronic Migraine Disease, so basically my whole head is a bundle of raw nerves.
I owe some of you an apology. I owe some people who probably will never read this an apology and that makes me really sad. You see, I use to be adamantly against pharmaceuticals and traditional doctors, except emergencies. I remember during the birth of my son, Joseph, they offered me pain killers during the birth, I had to be induced, he was a very complicated pregnancy and birth, he was sunny side up and didn’t look like he was going to turn and he didn’t. I declined. I ended up with a torn uterus, a detached bladder, a broken tailbone and a few things we won’t talk about. I should have taken that epidural. Then they wanted me to take pain killers and other medications afterwards, and I said no to all of that too. I wasn’t trying to be a know it all, I just had a birth plan and I wanted to follow it. Thinking back, I wish I had listened, I endured a lot of pain for a long time that was unnecessary just to prove I was “stronger, more of a woman”. I am pretty sure all I proved to the people around me was that I was bull-headed and stubborn.
I have spent my entire adult life learning. I am an avid reader and homeschooling momma so learning has been my passion. You name it I have probably studied it sex, relationships, nutrition, herbs, alternative medicine, essential oils, history, not math I hate math, I have come to accept I will always hate math.
Of course, over the years all my research for the kids paid off, they are really healthy. I am lucky they have never really been sick. Me, however, that is another story. I have struggled with Fibromyalgia, anxiety, ulcers, and heart issues. Each time, I was able to do the very minimum that the doctor recommended and then go on my merry way and find a natural alternative. Three years ago, I was really blessed to find a doctor who was willing to work with my know it all attitude and manage my care with traditional and alternative medicine.
Then one day while working on a huge project that I was super excited about IT happened. I had what felt like a knife stab me in the back of the head and exit out my eye. IT happened then was over. I thought IT was strange but no big deal. Over the next few weeks IT happened again and again. The pressure in my head started coming and never leaving. All of my traditional methods weren’t working, the pain was getting worse and the pain was becoming debilitating.
It just so happened my youngest had his yearly checkup, we share the same doctor, he took one look at me and said schedule an appointment for today. I need to see you something is wrong. He immediately put me on meds that I didn’t want to take, there had to be another way. I tried prayer, meditation, chiropractic, acupuncture, essential oils, nutritional medicine, energy healers, faith healers, Ayurvedic medicine, and I even went away to a mindfulness/silent camp to see if I could rewire my nerves by getting away from EMF. I spent 6 months and A LOT of money to find out that traditional medicine is sometimes really needed. I finally agreed to see a specialist and do further testing and take the medications they wanted to prescribe. For a long time, I carried a lot of shame over the fact that I could not seem to heal myself, I could not control my body, I’m not ashamed anymore.
I want you to know that I still believe in all of the things I tried, I do believe that they are helping. I believe that adding alternative medicine with traditional medicine is a perfect balance for ME! I stopped eating meat and I feel better physically and spiritually. I know that for me, stress is BAD, so I try to limit stress in my life. I started yoga and still get on that mat daily even if it is only for corpse or child pose. I have even been known to pull over to the side of the road and drop into child’s pose if I think that will help. 😉 I take specific vitamins because I also suffer from Chronic Migraine Disease and these vitamins have been studied and proven to help. I BELIEVE in studies now too, there is a reason they do them, when you are in pain you would buy and pay anything for relief even if all they were selling you was a glorified piece of fabric for a donation of $1144. Yes, I almost gave Paula White $1144 out of desperation. Can you say con artist, snake oil salesman? Thank god I googled her first. Otherwise I would have had a lot of explaining to my husband why I had just spent over a thousand dollars on a piece of fabric. That is what pain does it makes you vulnerable and charlatans know that.
I spend a lot of my day meditating. I no longer drink alcohol, not good to mix meds with alcohol but also I want to feel everything the good and the bad. I’m using essential oils; I have a diffuser in almost every room. I found one that works really well so I have that on me at all times. I am learning to take really good care of myself, something I never got a chance to learn how to do. Because at sixteen I was thrown head first into being the wife of a returning war soldier and a mother to an infant, 3000 miles away from anyone I knew, I was truly all alone. I wish we had internet and cell phones then it would have been so much easier. Survival was what I learned, not self-care. Survival looks a lot like control. I love control but here is the thing I don’t get to control anything. For me, that was the lesson I would be learning throughout this illness, to let go of control, to let go and just trust. I also needed to learn a little, okay a lot of humility.
This is where the apology comes in, I never realized until I was sick that people who want to “help” me also wanted to “judge” me for making my own health choices, included chastising me for my choices. I can’t tell you how many lectures I have gotten about the dangers of prescription painkillers, prescription drugs, medical tests, or my traditional doctors. Of course there are so many who think that I just need to lose weight, take a new vitamin, do this new holistic treatment, or my all-time favorite just pray more, maybe I have some unconfessed sin, or maybe I don’t have enough faith. This makes my already exploding head, make me almost take their head with me. What I have been witness to is my own insensitivity in others. For what I have done to others is now being done to me. I use to judge and now I am the judged, by family, friends, and strangers. So to anyone who has ever felt judged by me, I AM SO VERY SORRY!
Here is the other thing that has happened. People can’t see inside my head and see my nerves so when they see me out they think I am fine. They don’t see the cocktail of medications I have to take just to make it to an event. They don’t see the days in bed afterwards or the tears of pain when no one is around. I get it I look healthy I go out to enjoy time with my family, I post happy pictures, would you rather I post pictures of the latest allergic reaction where I couldn’t stop shaking or how about when I throw up from the pain? No one wants to see that! I don’t want you to see that because THAT ISN’T ME! That is my body acting up. ME is the happy mom playing with her kids, ME is turning the radio all the way up and dancing through the house, ME is smiling, ME is happy in the sunshine. I want you to see ME not the naughty nerves in my head or the reaction from the latest med I am on. I want you to see the ME I am on the inside, the ME that I was before IT happened. Mostly, I want to remember that there is a ME under all the pain and maybe just maybe, Me will be able to come out to play again.
I wonder what would happen if we all could trust, love, and show each other compassion? Could we maybe understand that what we see isn’t always the full picture? Could we be a little less quick to judge? Could we understand that what worked for you may not work for me? Could we just start loving everyone just a little bit more and trusting that they are doing the very best they can? Maybe just offer a hug instead of advice.
Here is my promise to you: whatever health crisis you are going through I will not judge how you chose to treat it. If you choose to yoga and meditate it away, with a side of marijuana, GREAT, or if you choose to take the prescription pain pills, GREAT, either way I trust you! I am just honored to walk a part of it with you. There is very little in this life we get to control but we do get to control how we chose to heal and we need to honor ourselves and others in their own journey.
For those of you who want to know what Occipital and Trigeminal Neuralgia and is, I found a little video that shows what it feels like. When I saw my last doctor I was unsure of the diagnosis and he said well let’s do a quick test, it may hurt but we will know. He was able to activate an attack. HOLY HELL! While I didn’t like the pain I did appreciate the fact that the pain really was real and that FINALLY we had a diagnosis. Most people know what migraines are, the only difference with normal migraines and the chronic ones is that mine last for days and I get at least 5 a month. The combination of the three means there has not been a day in the last 9 months where I have not been in pain unless I have been medicated, and even then it isn’t gone it is only dulled. We are hoping to find the right treatment so that I can actually be pain free.
I found this video of Occipital Neuralgia that describes what it feels like:
If you watched the first video you will see that the symptoms are rather similar: