Tags
#livingwithTrigeminalNeuralgia, #trigeminalneuralgia, anxiety, cataracts, drug side effects, memory loss, Social anxiety, Trigeminal Neuralgia, vimpat
Some days are just plain hard
Some days are just hard; not as bad as others, but hard. Yesterday was one of those days. I had an eye appointment at Ochsner, and while I wasn’t dreading the appointment itself, I had trepidation about going to the hospital. With so much controversy surrounding the covid virus, and some places demanding you have the vaccine or no entry, I walk on eggshells thinking that Ochsner might adopt that practice. Most things that I do not have control over, roll off my back (with a little push), but my anxiety about having the vaccine forced upon me along with not knowing how bad my trigeminal nerve pain may be at any given moment, really wreaked havoc on my system yesterday. As a result, I ended up sick yesterday afternoon and it is lingering into today.
I was completely out of my normal routine yesterday. First, I had to wake up early, which is normally not a problem, but I haven’t been sleeping well the last few months due to sciatic nerve pain – which I am in physical therapy for right now. Add in all the anxiety from the list above and my day wasn’t off to a great start.
I really like my eye doctor. She is quite friendly and still professional. I was particularly impressed with her yesterday. When I did my pre-check through the app on my phone, I mentioned that I had been on Vimpat and it had affected my vision. When we spoke about the drug, she mentioned that she had seen my note and researched the side effects before I got there. I see a number of doctors and this was a first. Most wait until they are sitting there with you before going over your chart. My left eye has been a little blurrier than before and she told me that I was almost at the point where insurance will pay for cataract surgery. That means it’s bad. That wasn’t pleasant to hear! The insight did help to lessen my anxiety because I now understand that the cataract is also part of the problem and because of this, I will not be so anxious about my vision problems being a side effect of the drug.
My doctor said she could still correct my vision with a stronger prescription so I didn’t have to make a decision any time soon. That was good to hear because I have enough other health maladies to deal with. And, the very idea of someone operating on my eyeball? That sends shivers down my spine. I ended up spending a tidy little sum on new lens and a pair of sunglasses.
While the eye appointment itself did not cause me anxiety, not knowing how much talking I could do did. God has put very gracious people in my life as of late who understand my face pain and the difficulty the pain can cause while trying to speak. Yesterday was no exception. The doctor was patient and kind as I searched for words to answer her questions. My precious husband, bless his heart, who can finish my sentences had to step up.
The necessity of being your own advocate
I have written about Vimpat and the side effects I have experienced from taking the drug. I cannot stress enough that you must be your own advocate. Always research the side effects of any medications you take. And, if you take a drug as I did that you may not be aware of the changes, make sure you let someone around you know the side effects so they can alert you. I am still having problems trying to complete sentences at times. I begin and then lose my place. This is aggravated by trying to find words I can say with minimal pain.
The human brain is an awesome instrument
My mind is pretty busy during conversations. I am trying to speak without pain, and while I am speaking, my mind is taking the words my brain has chosen and recycles through them for sounds that are painful – b, m, n, p, etc. – and exchanges the words for words without those sounds and replacing them without me missing too many beats in a sentence. The human brain is amazing. My brain manages to do all of this in split-second timing and still manages to forget memories or makes me lose track in the middle of a sentence.
Also frustrating is by the time someone finishes explaining something to me, I have to ask them to repeat it when they finish. I also have my own sign language so that makes conversations even more interesting. It might be advantageous to learn real sign language. My husband has been finishing my sentences for me for the last four years. Now, even my physical therapist is finishing my sentences. All you can do is laugh. I’m just thankful I have good people in my life.
A slice of humble pie
I was at physical therapy last week and really having a difficult time speaking. As I looked around, feeling frustrated with the pain, I noticed several older people who were doing therapy for stroke injuries. It was a humbling experience because they were having difficulty with speech for a different reason, but we all struggled the same in our quest to be understood. The pride in me wanted to say, “Oh no! I’m different. I have Trigeminal Neuralgia. I didn’t have a stroke.” God brought me down a notch that day. It didn’t matter why I was struggling to speak. I wasn’t any better than they were because I had different health issues. We tend to think that we aren’t full of pride, but it is in those little humbling moments that our eyes are opened to the truth. As humans, we are all full of pride. I guess a little “humble pie” never hurt any of us.