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Chronic Illness - a memoir

It’s really frustrating when you have to deal with pain on a daily basis. Like chronic pain. And sometimes chronic pain seems like nothing because it’s there all the time, and you tend to get used to it. Some days are better than others; the bad days seem almost intolerable. Finding a comfortable position to sit in is hell in a handbasket.


Then there’s acute chronic pain. (I’m pretty sure I made this one up.) Acute meaning – sudden or sharp, pain. Chronic meaning – you’re stuck with this bullshit (aka: ongoing pain that can last months to years, even when the injury or illness that caused the pain has been healed and gone away)! This has been a recent experience of mine. I’ve kept quiet about it. I don’t want pity or attention from people for what I’m going through. Although now I’m finding it’s important for people to know and be aware of, since it can potentially get so much worse than it already is.


Before I tell you, maybe you should know why I’ve decided to keep quiet about it until now. I consider myself a pretty self-aware person, and am always trying to improve and become a better version of myself. In working with my health coach, I realized that the attention-seeking behavior I subconsciously developed as a child is holding me back in more ways than I had even realized. (Am I saying every person with a chronic illness is like this? Absolutely not. Please refrain from making that assumption.) Because of things that happened in my childhood, my subconscious developed a belief that in order for me to be loved and receive attention, “I needed to be sick, too.” Thus, has been the story of my life – chronic bronchitis, tonsilitis, sick every Christmas, fractured wrist, chronic back pain due to an injury in high school, fibromyalgia, two car accidents, and now trigeminal neuralgia. If you don’t know this already – what you believe, even subconsciously, is all that you will see and experience in the world; until you consciously decide to change it. So, if that’s true, then it makes sense that I constantly was sick; and even when I became aware of this subconscious belief, it still continued to play out in my life in other areas including my job, career choice, and relationships.


Here’s what I’ve come to realize is stuck in my subconscious: “If you’re always sick, then you never have to be well enough to thrive and see things through. You can always have a fallback onto your disease. While it’s a big part of your life, it can subconsciously creep in and become an excuse without that even being the intention you have.”


The mind is a tricky, tricky bitch. Not many people will understand what I’m saying in that statement above and will take it as a personal attack. Please don’t. While chronic pain and chronic illness are a real, physical experience, mentally there’s a whole lot going on below the surface that has everything to do with what’s manifesting physically.


Let’s get back to what I want to share: Trigeminal Neuralgia. This pain all started a few years ago when I was having back molar tooth pain. Like electric shock kind of pain. Stop you in your tracks kind of pain. Of course, I thought it was a tooth problem so I went to my dentist. He found a cavity, and filled it, and the pain went away…


Until it didn’t.


The pain came back! This time the dentist checked the filling, it was fine. He suggested a root canal and crown. Root canal cleaned out an infection that was inside the tooth, and the pain went away…


Until it didn’t.


I had a few minor episodes of electric shock pain that would come and go for a day or two, a few times during the year.


Until the pain came back with a vengeance.


I was sitting across the room from a client, taking a sip of my strawberry flavored Spindrift, and suddenly the electric shock was back, and worse than before. It didn’t stop! Normally the pain was a quick ZAP! This was new. This lasted several seconds. I was white-knuckle gripping my chair. Pretty sure I terrified my client. Luckily, she was very kind and supported me through it. As soon as her session was over, I contacted my dentist to find out if I could have this damn tooth removed!


Dentist was out of the office…OMG! Luckily, I was able to get a referral to a periodontist close to my office, I knew the ladies at the desk, and they were able to squeeze me in the next morning. Got the tooth removed; and because the pain was so bad during the extraction, I was put on 6 different medications to manage the infection and the pain. The steroids wore off, and the throbbing and electric pain was still there. The periodontist thought it was nothing and sent me to see my dentist. My dentist thought it might be a dry socket and put some healing putty on it. Did diddly squat. Called my dentist again, went in, cried my eyes out while death gripping the chair because of the pain, and he called an oral surgeon in town. The oral surgeon really did nothing to examine me, said it’s a dry socket and it will go away once it’s finally healed, and said I need to go back and see the periodontist that did the extraction.


WTF!


Finally, the socket healed. Do you think the pain went away?


Nope.


Nobody had an answer.


My primary doctor, after desperately messaging her through my MyChart, suggested I head to Urgent Care. So, I did. And the doctor was baffled as to why the first two dental procedures temporarily made my pain dissipate. He thought it might be trigeminal neuralgia; but my case didn’t fit the “typical presentation.” So after my CT scan, where he found nothing, he sent me home with no answers, and no help for my continued pain.


After about an hour, the doctor called me and said after he had done more research to write up my chart note, he wanted to try putting me on an anticonvulsant medication, Carbamazepine, which is an off-label use for trigeminal neuralgia. He thought I might have an atypical case. Well after starting the medication, it seemed to help! Less pain, less frequent attacks…


Until it wasn’t helping.


I was permitted to double the dose. Now I take one pill in the morning and one at night. This helps me get through the night and get some sleep. I still have times when I get an attack, but it’s way less severe than it was when I first had this tooth pulled.


The neurologist confirmed this diagnosis after our first appointment, and the radiologist that read my MRI and MRA scans also confirmed the diagnosis. Apparently, I have an issue with a vertebral artery on the right side, which is where the pain is. The vertebral artery issue is what can be causing the pain to the nerves in my face, which is what trigeminal neuralgia is. Facial pain. More specifically, here’s how it is medically described:


“Trigeminal neuralgia is sudden, severe facial pain. It's often described as a sharp shooting pain or like having an electric shock in the jaw, teeth or gums. It usually happens in short, unpredictable attacks that can last from a few seconds to about 2 minutes. The attacks stop as suddenly as they start.”


And now you know why in paragraph #2, I described this as “acute chronic pain!”


So if I seem a little off or on edge, sometimes, this is why:


Sometimes it feels and looks like a spasm or seizure of the face.

Sometimes it makes my lip move.

Sometimes it makes my eye twitch making me also look like I have a tic.

Sometimes I have pain free days.

Sometimes I have intermittent pain throughout the day.

Sometimes I can wear a mask pain free.

Sometimes simply touching the mask to my face makes the nerves go haywire and I don’t wear one.

Sometimes I forget to be gentle when washing my face and accidentally cause an attack.

Sometimes I gentle breeze or fan on my face causes the nerves to go haywire and stops me in my tracks.

Sometimes I can drink a hot drink.

Sometimes I can’t.

Sometimes I can drink a cold drink.

Sometimes I can’t.

Sometimes I can lick my lips or put on chapstick.

Sometimes I can’t.

Sometimes I can chew a steak.

Sometimes I can barely open my mouth and shove in a spoon with some yogurt or applesauce.

Sometimes it’s a quick burst of pain.

Sometimes it throbs and crawls up the entire right side of my face.

Sometimes I can handle the pain.

Sometimes I cannot and I just cry and want to stay at home in my bed.

Sometimes I have to forgo drinking water because any movement of my mouth is torture.

Sometimes I can brush my teeth.

Sometimes I cannot. Sometimes I can sleep without pain.

Sometimes I scream, writhe in agony, and cry in my husband’s arms as I try to sleep.

Sometimes I sleep on the couch or in the extra bedroom so we can both try to get some sleep.

Sometimes I choose to pop another pill because it’s just too much.

Sometimes I can kiss my husband.

Most times I cannot.

Sometimes I can talk.

Sometimes I have to slow down my speech and change the way my mouth moves to talk.

Sometimes I don’t talk at all and choose to text…even in session with a client.

Sometimes I cancel my day and reschedule all my clients.


As you can see, the trauma and the torture of this disease is the “sometimes.”


I’m reminded of a picture I saw with a quote that said something like this:


“When I don’t say anything, I’m in still in pain. When I do say something, it really fucking hurts!”


Just because chronic illness is silent, doesn’t mean those that suffer with it don’t need support all the time. We do. Please don’t shove it in our faces when we ask and say “you were fine yesterday.” We weren’t. It was manageable yesterday. Today it is not. If you don’t understand, ask. We’ll tell you what it’s like. But maybe don’t ask us on a bad day, because on those days we’re barely getting by, which is why we ask for help.


To conclude, if you’re a chronic illness warrior like me, raise your flag high. Ask for help when you need it. And from my own therapeutic lens, incorporate mental health into your healing regimen. It is helpful in so many ways to grieve the life you wanted, and to come into a place of acceptance so you can find healing on another level. Like I said already, the mind is a tricky, tricky bitch! If you don’t have a chronic illness, I hope this was at least somewhat enlightening for you on what life is like trying to get a diagnosis, and what life is like living with it.


Namaste lovelies,


The Meesh

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