I’ve been struggling with pain today.
However, I had a pretty decent day yesterday, so I’m thankful for that. I got to sit and visit with a couple of friends and do a Bible Study together. They both have chronic pain and medical issues too. The three of us each have a different medical condition; however we all have the same chronic pain ‘side effects’. It sure feels good to have a friendship with others who can understand what you’re going through, because they are too. No matter what that entails. When you tell them something you’re feeling or going through, and their eyes light up, and they say,”ME TOO!!!” You both know that you really do understand each other.
What I’m finding out, is that when we reach out and talk with others, we discover that we’re not quite as alone as we think we are. There are so many of us that are secretly fighting diseases, illnesses, disorders and disabilities. Most people can’t see it from looking at our outsides. But so many of us are SCREAMING on the inside. I’ve been finding out that if you say, today I’m hurting, today I’m in a lot of pain, today is a good pain day for me, ect; you find people will be more honest about what they are going through or struggling with also. We are more alike than different, and everyone I know wants to feel like they belong. So why not reach out to each other and be real with each other, stop putting up pretences.
Chronic pain is not only physically painful, it is also Isolating. Debilitating. Exhausting. Depressing. Anxiety provoking. Embarrassing. Self-Esteem deflating. Independence stealing. Dream taking. Life altering. Frustrating. Overwhelming.
We struggle with constantly being exhausted, chronic fatigue goes hand in hand with chronic pain. This fatigue is more than feeling a normal tired, it’s like your bones, muscles, and even your eyeballs are tired, all the way through; and it feels like such a massive effort to do anything. There’s the constant guilt of this too, ‘I wish I could do more for my kids, my husband/wife/partner, I wish I could be there more for my friends.’ ‘I wish I was ok so that the people in my life didn’t have to worry about me all the time.’
With me right now, I wish I could drive, however I can’t drive right now. Even when I don’t need to take my pain meds. Reason being, that I get extremely sharp, electrical shocks that come out of nowhere, with no warning to me, and they jolt across various different places on the left side of my face. When those happen they not only hurt like hell, they scare me as they ‘come out of nowhere’. When they do come out of nowhere, I jump. I can not and will not chance one happening while I am behind the wheel. If I did and I caused an accident, or just wrecked my car, if I hurt someone I love or someone you love, I would never be able to forgive myself. It’s just not worth it. That being said, it’s very frustrating, as I need someone to take me everywhere I need to go. I can’t just jump in the car and go run errands, get to meetings, run something to my kids at school if they needs it. It puts more responsibility on my husband that he shouldn’t have to have. You get the picture. That is hopefully short-term. After I recover from my upcoming brain surgery, I will be able to do my own driving again. At least until it comes back.
Those are more short-term side effects, so to speak.
My last appointment with my Neurosurgeon was before I had the Glycerol Injection surgical procedure. During our office time together ,the day before the surgery, he told us that he now is very sure that my TN* is not only on the outside of the Trigeminal Nerve, from the nerve being exposed and something touching it causing the pain; but mine is also on the inside of my nerves, inside the nerve fibers.
So, what does that mean for me?
It means things that I haven’t even had a chance to start to process yet.
It means that the plan that I had in place, finally, was no longer going to be able to be my plan, my medical course of action.
It means that I no longer am going to be able to call Dr Sahni when my TN* pain returns after a year or so of relief from my last MVD** and tell him its back, and then proceed to just schedule another MVD** and KNOW that it’s going to work. Which, my friends, let me tell you, knowing you have a plan in place that is for sure going to work for you and you will be pain-free after it, makes the pain you are experiencing at the time WAY, WAY, WAY more bearable.
Because my periods of pain-free time is getting less and less in between brain surgeries. And because we now know it’s also inside the nerve fibers. Now I have to start researching other treatments, options, surgeries, etc. that can now address the internal nerve fibers also. Great! You may be thinking to yourself, ‘so, what’s the big deal? There’s got to be something out there, don’t worry and stress over it, it’ll all work out.’ Ok, yes, you’re probably right, it probably will work out, I probably will find something else. Eventually. The thing is, it’s extremely physically, mentally and emotionally draining to do this.
First, I’ve got to research TN in the internal fibers and figure out what that even means and entails. I have to understand what’s going on, because I feel like if I understand it, then I can fix it. Make sence?
Then, I’ve got to start researching how this can be fixed/helped. Following that, who now does this/these procedures or whatever it is that fixes it, where in the world they are located and how do I get in to see them? Then, when all that happens, I still might not be a candidate for whatever the ‘fix’ may be. Or, maybe I am. And I get an appointment, (probably 2 months down the road, because this is a rare disease that I have and not much funding if any is out there for TN, so there are limited doctors that even know about TN, and even a smaller amount that specialize in it). After all that’s said and done, I make it to my appointment and have the procedure/treatment preformed, well, then whose to say it does work for me? I’m not being a pessimist, not at all, but I am being a realist. I have been through this dance for many, many, many years. Actively for 14 years. Most of the medications, procedures, surgeries that I have had, haven’t work, in fact a few have even made it worse for me. And in the meantime, I am in some major pain.
I have done it before and I will do it again. It just kinda sucks that I have to, you know?
The part that’s really been a struggle for me this time, is that I had a life going and plans for my future that now need to be rerouted because those roads are now closed.
I was going to start school, (Community College), this fall. I was going to be taking some classes, all my basics and all the ones that go along with and transfer to a nearby University’s Interior Design program. I was going to take the general classes at the local community college over the next three years as the rest of our kids that are still at home finish up their high school years. Then when they graduate and go off to college, I was going to transfer to the nearby University and dig into the Interior Design specific program. After I graduated from the university with my degree, I was going to open my own design business. I was really excited about this!
For the first time in my life, (besides when I was in the ARMY), I could confidently say, “I am good at this!” Well, I can’t do that anymore. When I learned my TN is in my nerve fibers also, that this was going to be a life long struggle, that with the unpredictable nature of TN and the debilitating pain that goes along with that, there really is no way that I can go through 7 years of school. On top of that, let’s look at what it would look like being a designer after that. There’s no way. Even if I could work around it, there’s no way I could build a business when I am unreliable. I can have an appointment with a client and have to cancel because I’m on my butt on the floor in pain. It will also be a last-minute cancellation, that’s just the nature of TN.* A career where talking is key? You really can’t have a disease that sends electrocution like shocks through your face – when you talk, because talking is one of your triggers.
Along the same lines as that, I am a person who needs to be around other people. I have a passion for helping others and showing compassion and empathy and offering a shoulder or an ear. I am a career volunteer. Because of this disease, I can no longer travel to Haiti to do any kind of mission work. I miss my Haitian friends and the children I’ve gotten to know from there. Part of my heart belongs there. I have a son, daughter-in-love and a grand baby now because of Haiti. (Thankfully the three of them live in the States now too, so I get to talk with them and see them).
I also was a YoungLives leader, through the YoungLife organization. That is non denominational Christian organization where I walk alongside teenagers who are pregnant and teenage moms. With that goes the responsibility of being a constant, consistent person in their lives, a lot of these girls don’t have that person in their lives. Well, how am I supposed to be that now? I can no longer be a consistent person in my own life, let alone in theirs. So I had to resign my position. I really can’t just be part of the YL staff or support staff either, as I can not be counted on. I can not make a plan and follow through every time, because I am suffering with TN right now, and I never know when it’s going to flare up and knock me down.
So, I will feel frustrated and defeated, alone and depressed, anxious and afraid. I will feel isolated and worthless, disappointed and ashamed. But I will also feel loved and supported, cared for and determined, important and heard. I will keep fighting for me, for those around me that I love, and for others with similar struggles. I will go on and I will not stop until we’ve got a cure.
Thank you Jesus!
* TN = Trigeminal Neuralgia
**MVD = Microvascular Decompression, aka brain surgery