I am now at my full dosage of the new medicine and I have been for a little over a week. Most of the side effects have lessened now, I no longer feel drunk and I’m not having any vision issues anymore. The only side effects I have still have are memory issues, some speech problems and annoying leg aches. Some days are worse than others but I try to keep finding humor in the fact I feel 80 years old. I have had some weight gain and I finally feel at a point that I can do something to help combat additional gains.
On positive notes I feel as though I have more positive days than not. I do feel the medicine is working on helping me manage the pain. I currently started physical therapy to do some upper cervical manipulations. After doing lots of research on ways to manage the pain upper cervical chiropractic care is one of them. So far I have only had 2 appointments, so I will post more on how this is working out for me.
I have decided to have a second opinion and this coming Thursday I see a pain specialist that loves the thrill of Trigeminal Neuralgia patients and has a great success rate with the treatment.
I am doing everything I can to find ways to cope with the pain without the use of pain medicine. I started wearing wigs at the end of August after I tried on a wig for fun and I noticed the wig cap held my hair in place and it helped with the pain tremendously.
I love wearing the wigs. It’s a lot of fun to be able to change your hair every day without any damage to your natural hair. Plus I have met a wonderful community of other wig wearers that are the most amazing women ever!
Speaking of hair….I have had lots of discussions regarding my hair with my family and my doctor. I cannot even describe how much pain comes from my hair. People look at me as if I am crazy when I say that my hair hurts. Hair cuts are excruciating and I keep my hair in a short pixie cut to help minimize the pain. Well after lots of begging, I finally just said screw it and I shaved my head. It was the BEST decision I have made since this pain has started. The relief was almost immediate. Showers are no longer as painful, I can almost touch my scalp with normal pressure without screaming in pain. The day after I shaved my head was the least painful day I have had in a very very very long time.
I will do almost anything to keep my pain at bay. If it means becoming the next Sinead O’Connor or Demi Moore you better believe I will jump on that train right away!
So I am now currently on week 2 of being heavily medicated and I’m still not at my full dose yet. How I manage to function I still have yet to figure out. The past week has been relatively pain… lessened… I think is the best way to describe it. I have had some minor pain but nothing like I had been dealing with. I walk around most days feeling completely drunk without the joys of actually drinking. I had 2 days that I felt completely like my old self again. No body knew how to handle me because it had been so long since they saw my over the top happiness and better than normal sarcasm. I was elated….and then it came to a crashing halt yesterday. I woke up feeling as if my cheek was being crushed by an elephant and someone was stabbing me repeatedly in my ear.
How could I be on so much medication and still feel this pain? What happened to the happiness I felt? Why do I hurt again? Please don’t mean this was the beginning of the worsening already. I’m not ready. I have goals. My family needs me. Ok McKenna, you must get out of bed and make it to work. Just keep putting one step in front of the other.
I made it to work yesterday, made it through conference calls and trying to put on my strong face for everyone. And then I broke. In the middle of my office I was crying, my face was hurting and I was wondering how in the hell I am supposed to keep going when I feel so bad. Once again all of those thoughts from the morning plagued my brain. I had several great birdies tell me that it’s just one day, today is only one day and that tomorrow may be different. Do not lose hope on ONE day. They were right. I went on with the rest of my day in pain, but I did it. I made it to my daughter’s skating class and I stood there bundled up with continuous ear pain, but I did it.
Today I woke up at 2:33am in pain. I made it a conscious effort to tell myself that yes there is pain, but today is a new day. I drank an entire pot of coffee, had some orange and lemon essential oils diffusing in my car on the ride to work and I decided that no matter how I feel today that I overcame yesterday. I made it one more day. Today is painful, but it is nowhere near the pain of yesterday. My strength and positivity will carry me through and I have my little birdies to help remind me when I need that extra push. I have a long journey ahead of me, but it is one that is filled with lots of laughs, memories and sarcasm. I will always have days that are filled with pain, sometimes more than others. But that is it, just one day. If I keep looking at life and this journey I have been given as one day and reminding myself that I can always rise up and conquer the next, then I will always have the strength to do so.
It has been one week since I received my new diagnosis. I think I have been through every emotion possible in that time frame.
At first I was incredibly devastated. I cried through the majority of the doctor’s appointment, the trip home and into that evening. My face burned on my TN side every time a tear ran down. That day was a day that I needed to cry for myself. I knew that I had to get it out and be sad.
The next day was still pretty hard. People had lots of questions that I had to answer multiple times. My sarcasm was right on point that day (my coping mechanism). My coworkers were great, they made me laugh throughout the day and tried to keep my mind off everything. I googled the shit out of Trigeminal Neuropathic Pain just to find minimal information. Next I turned my searches to Anesthesia Dolorosa, which I knew better than to do, but I had to. I’m one of those type A personalities that much have all the answers so I can plan out every little detail, even though life rarely goes as I planned. This is scary stuff, especially if I’m only at the beginning.
Over the next few days my husband and I talked about how all of this could affect our family and life in general. The medicines I take make me a zombie and slow me down mental so much. Our goal is to get my pain level down to an annoying but tolerable level where I can still function. I want to be able to deal with the pain at a level I am really good at hiding it so the kids don’t realize mommy is hurting. That is probably the saddest part for me right now. They are troopers though. Both of them have witnessed some of my attacks and my daughter will just hug me and ask if it makes it better.
I’ve been angry. I’ve asked who did I piss off bad enough to deserve this. I’ve always been told growing up that every thing happens for a reason. I’m really questioning if that is true. Surely I was not meant to suffer with ungodly pain every day for the rest of my life.
I was dreading telling my boss the extent of my diagnosis not because of what I was afraid she would say but more so that I was more disappointed with myself because I’ve worked really hard to get to where I am. She is and will always be my cheerleader. She reminded me to just stay positive and take one day at a time. I have lofty career goals that I still hope and will achieve. I’m not ready and I will never be ready for this to completely keep me from working and doing what I love.
I’ve made it my goal to laugh every single day. Not to dwell on what I cannot change, even on bad pain days when the meds don’t work. Spend as much time with everyone I love as much as possible. Live my life like nothing has changed. Because as of now nothing has changed. I may not get worse and I pray every day that I do not. Always remember to take one day at a time. Just because I may have a bad pain day today, does not mean that tomorrow will be the same.
I refuse to sink.