A couple weeks ago I visited my rheumatologist to discuss my fibromyalgia. I haven’t had too many “bad” days, so it was just a routine visit to discuss meds and whatnot. He informed me that a new medicine I was on (prescribed by neurologist) would likely lower my white cell count causing me to have difficulty with fighting off infections. Yay me.
Today I got about 40 needles in my face, head, neck, shoulders, and back. These needles, though incredibly painful, allow me to function. They allow me to get up out of bed and at least try to be normal. These needles are botox for migraines.
But before the needles happened, I had to discuss some weird side effects from that other medication (mentioned above). I explained to my neurologist what had been going on since increasing the dosage. Skin has been peeling off of my fingers and my feet. I’ve been sick with what feels like the flu. Turns out I am severely allergic to the only medicine that was keeping another chronic condition semi-tolerable. A condition I visit a neurosurgeon about tomorrow. A condition that chose me as one of its few victims this year. Trigeminal neuralgia. So tomorrow I will visit University of Maryland Neurosurgery to discuss surgical options for this pain, also known as the suicide disease.
Have you any idea the fear involved in deciding on a procedure that uses radiation to essentially kill a nerve right where it exits your brain? And even though the pain is the worst I’ve ever felt in my life, this procedure scares the hell out of me! I realize that with the 3 conditions, also known as my pain trifecta, I am not living the life I wish to live. And I want my life back for sure. The risks, though; I’m just not sure I’m ready for them.
At this point, I am not medicated since I had to stop the one and the other makes me way too antsy. I will struggle through one more night of insomnia tonight before making my way on my 3 hour journey tomorrow to see the surgeon. I’m scared.
Yesterday I was diagnosed with now a 3rd pain disorder… Er disfunction/disease/ailment/illness that causes pain. I don’t even know what to call it. All I know is I’m really over it.
I’m over not being the woman I want to be. I’m over not being the mom I was; the mom my kids deserve. I’m over people questioning my constant illnesses and my constant pain. I’m over people making jokes when I slur my words or when I walk with a limp. I’m over this daily struggle.
But it’s my new normal. I have to learn to deal. 3 years ago I woke up with a migraine that never left. Thankfully, botox injections ease them enough so that I can function. Almost 2 years ago I was diagnosed with fibromyalgia. That was also a major change and adjustment. One I still struggle with daily. And now trigeminal neuralgia. I do not know much about it yet other than it’s rare, it’s painful, it can happen to anyone, and there is no cure; only the attempt at treatment.
I am not looking for sympathy or anything. I am primarily writing this just so I can get it out. So I can face the music and say to myself, “this is your new normal so learn to deal”….
I’m not sure what the future holds or if the meds will help me. I also don’t know what fresh hell awaits me for next year. Anyone wanna place bets? I’m kidding, don’t be so sensitive!
Until next time….
This universe is conspiring against me.
Dangling carrots, each amazing possibility.
Here, look at this. You can touch it if you please.
But let it go by morning, watch it as it leaves.
A supernatural slight of hand.
A karmic confusion from beginning to end.
via Daily Prompt: Slight
Deep inside, a feeling, a longing to belong.
At the center of her being, a sad and lonely song.
A shattered sense of self.
A lost and broken girl.
Wildly seeking something.
A reason to go on.
Aching and burning, that reason doesn’t come.
An empty core is left, her heart is on the run.
via Daily Prompt: Core
I found a new book recently that is a daily devotional for intellectuals. It offers various readings each day presenting facts from the seven fields of knowledge. While reading the other night from the area of Philosophy, I came across an interesting idea presented by Socrates. Without the exact quote, the book presented it like this:
Socrates explained that he was no wiser than any other; it is only that he is aware of his own ignorance. That is what made him intelligent, in a sense.
I went online and found a few quotes that were similar and wanted to present them and discuss them here along with my thoughts on the concept.
True wisdom comes to each of us when we realize how little we understand about life, ourselves, and the world around us.
I know nothing except the fact of my ignorance.
Socrates evidently challenged men that claimed to know so much about various topics just to prove they did not know as much as they claimed to know. I think we can learn a lesson from this. It is our ignorance and our lack of knowledge that allows us to see ourselves for what we truly are. The ability to realize that I am ignorant to so much is what provides me with the wisdom in my life. Understanding that my knowledge is limited allows me to respect that which I do not yet understand and strive to continuously add to my knowledge base. However, I know that I will still be learning as long as I live, and I also know that I will never in my lifetime gain every bit of knowledge which exists in the world.
Something that has always fascinated me about those with intellectual disabilities is that they are content in their ignorance. Consider those with Asperger’s and their superior “hyperfocus” on topics which interest them; they continue to learn as much as they possibly can about a topic and are not concerned with their lack of knowledge of other topics. To me, that seems to put them at a higher level than most people. Many of us like to pretend that we know so much (myself included) and we are merely full of useless facts that do not provide anything to the greater good. We like to deny our ignorance of certain things in order to maintain a superiority complex. Those with intellectual disabilities seem to be aware of that ignorance and completely accepting of it. They do not need to know everything. They know what they know, and they are happy in that knowledge.
It makes me wonder if my desire to know so much is commendable or detestable. Should I continue to strive for knowledge or be more accepting of the fact that regardless of my quest to learn as much as I can, I will never learn it all? Should I be content in my ignorance of those things which I do not, and may not ever, understand? What are your thoughts?
It is truly a sad time in my life right now. I am not writing this seeking pity or condolences. I am writing this because I have so much to say on the topic of death and how we don’t ever know when it will find us. Today, we buried a 56 year old grandmother. Three months ago, my 34 year old brother-in-law. My poor children (my daughter especially as this was her grandmother today) have seen so much death in their young years. And it makes me ache from deep within my soul.
I have a special place in my heart for children. And to see so many show up to Mrs. Audrey’s funeral today really broke my heart. But it also made me happy to see just how many children she mattered to. Just how many children she helped in so many ways. But that heartache, that grief, will follow these children. As much as we like to think that children are more resilient than us adults, we must recognize that they will forever hold these memories in their hearts, aching and not understanding why they had to endure it at such a young age. They will think, 20 years from now, back on this day and remember the tears and the sobs of those around them. They will remember just how much they loved Mrs. Audrey and all that she did for our little farm family. And for some of them, it will be their first memories of death.
That is truly heartbreaking. To think of how many children will most likely cry at our first horse show of the season. Shows where normally Mrs. Audrey would show up late, barreling up the dirt lane pulling a horse trailer, stopping at the porch to drop off the cooler full of ice for our food stand. The times we will laugh remembering those times and her heart of gold will be the only thing that gets many of us through the upcoming show season.
It is times like now that we reflect back on how we interacted with others. Did we show them enough appreciation? Did we let them know they were loved? I know that I thanked her many times over the years for her love for my daughter. She showed her love in many ways, never faltering, never failing. And my daughter will hold on to those memories forever. I know that I have raised my daughter well and she never let Audrey’s good deeds go unnoticed or unappreciated.
As I sat through the service listening to all of the things said about her, I could only hope that when my time comes, those same things are said of me. I hope that people note my strength and resilience, my love for my children and my family and friends. I hope that by the time death finds me, I have achieved all of my goals and watched my children reach theirs. Death finds us all, but will we be ready?
Kristen A. Ruchalski
Hey guys. As I’ve touched on in previous posts, I struggle with fibromyalgia. I finally said enough is enough. Last week I decided to give something else a try. After a few discussions with my doctor regarding gut health, and a few chats with a good friend, I began my journey with Plexus.
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~What if you could change everything?