Enduring the Pain

The beginning of a day, you wake up and feel the day, existing inside of your body are the receptors of how this day is going to be, can it be altered, maybe, the only question is How?

You know the moment you wake up how the day is going to be, like the weatherman you have a pretty good idea as soon as your eyes open and you try to move. I have a daily stretching routine that I do before I get up each morning. This will tell the tale for this day, whether it is a high or low day, I hate the high days days, really, really hate the high days.

So my eyes are open and my body is not moving, it is cold outside and raining, I can hear the water running down the gutter outside of my bedroom window. I try to move and here it comes, the intense pain, it starts in my foot, almost like a stab, but not puncturing the skin, just a stab in the bottom of my left foot, hmmm, this is new it is usually in my right foot, so here we go…… I start my back stretches, rolling my legs from side to side. This usually aligns my back, puts all the vertebrae back into place, I have 4 or so that are bulging in the middle of my back, but today they are all stiff and not aligning, they feel like they are rubbing together bone on bone. I stop the leg rolls, no please, I know what this means…..today I will have to use my cane, the risk of falling has just been told, don’t risk it, just use the cane. They I try to do the pelvis lifts, working on my body strength, I do 5, not 50…….and now here comes the pain…….

So I carefully roll upright in bed, I feel my head start to ache as I lift it to the upright position, it feels like it is sitting on a needle, and as it rolls around the needle the pain intensifies…. the pain moves up the nerve in my neck and branches into my eye, a solid 10 on the pain scale, I bow my head and wait for the pain to calm enough for me to stand up.

As I stand the pain in my foot spikes as doesn’t my hip and back. I need some heat, I grab some warm clothes and head out to the kitchen to get juice to take pills, walking as lightly as possible, the house is not cold but the dampness is in the air, all of my bones hurt, a sign of a bad pain day has only begun.

I take a small handful of pills, multi vitamin, thyroid, anti-seizure and pain pill, a hot shower will help as I walk back to the bathroom to start the water as hot as I can stand it. When I get out of the shower I grab the heated throw and head to my recliner, I have a cup of coffee and bagel for breakfast while the blanket heats me up, now if I can get the pain down to a 6 or 7 I will be happy, waiting for the pain pill to kick in I sit in my warm chair.

As I wait I close my eyes, feeling my body fighting to combat the pain my heart can be felt beating from head to toe, like it is the only organ in my body, my whole body is pounding ever so lightly but with such intensity I can feel my breathing in my toes….. finally the pain is slowing as my body relaxes under the blanket…. finally I can relax a little to get through this day, just this day, hoping that tomorrow is a pain free day……..

Tidal Waves

Just in a moment it began….it started as a little bit of pressure, a little nerve fire above my forehead… then it came, a rush of pain, a hot, fast moving spiral of extreme pain, rolling around in my head, then the build up of nausea, don’t move, please don’t throw up…..having a fused neck from C4-C7, the last thing you want to do is throw up…Sitting as still as I can, I waited…..not moving, almost screaming…..but who would hear me, no one is here……still waiting for the pain to subside, can I drive? No, it will pass. Slowly the swirling of pain is slowing down, almost stopping, until it haunts, right in the back of my head……right where the atrophy is sitting on my cerebellum….. I look at the clock, although it seemed as if hours had passed, only minutes until I am back to my normal, my normal….

Maxy

Maxymus Poof Tackett. About to turn 5 years old. We bought him at 3 months old, nobody wanted him, he was the last in his liter. I was working from hone at the time so he was very used to being with me 24/7. Then I lost that job, the beginning of the spiral to disability. What a road we have been on. Now that I am home again 24/7 we is rarely out if my sight. Unfortunately for me, he thinks he needs me to go outside with him also, instead of using the doggie door…. but that’s ok too.

Traveling

My husband and I have travelled almost every year since we have been together. He is a big baseball fan so wherever we go we try to see a MLB game and go to the famous baseball fields. Me, I like the artsy stuff, galleries, flea markets, zoos and aquariums. We are kind of the tourist type when we get there, not the big camera sitting on your chest type, we just think that the best way to tour is to take a mass transit, if possible, most big cities have them, and walk.

We live in the US and have walked Boston, Chicago, New Orleans, St. Louis, San Antonio, Salem, Massachusetts, Memphis. Love traveling…..

A few years ago we travelled from the middle of the US (Arkansas) to Grand Canyon, spent a full day there. If you have never seen the Grand Canyon you must go, it is a sight to see. We went to the petrified forest and checked it out also. There is a driving tour there where you can drive and park to take pictures, pretty cool.

Then on to Riverside CA, have family here so we were able to set camp up in a cool house and cook, eat and sleep for a lot less expensive than doing the motel thing. We watched baseball games in all of the surrounding cities, San Diego, Los Angeles, Anaheim. It was super hot for the games but I always managed to find a fan and a place to stand for the game, way to hot to sit in the sun and I always was able to find a tv with my fan so I didn’t miss anything.

On the way back we travelled the southern border, we stopped in Tuscan to see my husbands Aunt, Uncle, Cousin and wife, a short visit with them and out to eat dinner and head to motel. New Mexico took forever because border patrol was looking for someone but when we stopped for the night we managed to find a small restaurant with the most awesome food, what a treat, then on to San Antonio for a few days over the Fourth of July, we stayed in a beautiful motel on the river for 3 days and walked every day down the river walk.

And finally it was over, we drove to Dallas to see my cousin since she lives on the way, and that ended the most memorable trip with my small family.

A 14 day trip with my husband, stepson and a full Jeep Grand Cherokee. Why is it that when we travel we feel like we have to take all of our worldly possessions with us? And then my stepson had to do a class so with everything else we had to have the laptop, energy for the laptop and a hotspot.

Cerebral arachnoiditis

Cerebral arachnoiditis: Cerebral arachnoiditis affects the membrane surrounding the brain, and often causes intense headaches.

After reading article in Medical News Today, Arachnoiditis: Symptoms, diagnosis and outlook Last reviewed Fri 2 February 2018 By Zawn Villines, this is the type of arachnoiditis that I have. It was involuntarily put in between my brain and base of my neck while receiving a steroid shot for pain in my neck. I had already had a cage put around C4-C5 after my neck collapsed over the fusion that I had 5 years previously on C5-C7.

I have no curvature of my neck anymore, the swelling in my back, where it meets my neck, is extreme, as is the swelling in both my left and right ankles. My right side swells more than my left.

I walk with a shuffle, mostly to the left, like I am always drunk. I was having extreme brain pains in the back of my head until put on a medication that seems to be keeping them under control.

I get severe back pain if I do any lifting, pushing, pulling, no house cleaning, no putting up dishes where I have to bend over. If I do this I have extreme back spasms and have to medicate myself further, which makes it where I can do nothing other than sit in my recliner, with a heating pad, in pain…. I am talking about over the top 9-10 type pain….

So with that being said I don’t do any housework, I do very little laundry or dishes, I get to help cook meals for my husband and stepson, I used to be an awesome cook, now not so much….

Something frozen that gets thrown in boiling water or in the oven. Spaghetti or ravioli, ugh, we are so tired of eating the same old thing……. I used to love to cook, I taught my husband how to make lasagna rolls, a long process that I just cannot attempt to do anymore….

If we are lucky I can remember how to make something, what ingredients we need to have, our lives have changed so much, it just isn’t fair, and really sucks……not just for me, but for them too.

So now here we are, we know what I have, cerebral arachnoiditis, but what do we do about it??

More MRIs, watch and wait, physical therapy, tired of it, I can do the exercises at home for cheaper…surgery…no…..pain medications, more and more and more, I feel like a drug tester already….. nerve stimulation, ugh….. acupuncture… I don’t think my nerves can handle any more needles…. so what do I do…….

“Treating arachnoiditis can be difficult. The area around the spinal cord is delicate, and even minor damage can have severe consequences.

Surgery is possible but not always recommended. Surgery is not always effective and exposes the spine to potential further damage. Even when surgery is effective, the benefits are usually temporary.” Same article….

So here it is….in black and white folks……surgery is possible but not recommended…..

Whatever you do, do not get any more shots…..