My 4th Zipperversary

I have been at a loss for words for the way I have been feeling. Too many of you understand, I know. As many of you know, I had five surgeries in three years, after being diagnosed in July 2011. Today marks the anniversary (or zipperversary) of my first decompression for syringomyelia, 8/8/11. My spine has been through a lot. And to this day, my pain is stronger than ever, more debilitating. Frustrating. Scary. I don't know what would be worse, knowing what the actual progression is going to be, or the not knowing? I'm sure knowing would change the way I live my life; would I be more outgoing or too terrified of the consequence? Would I live the life of a recluse ...waiting? Or would I just go for it, do it all, before it was too late? I like to think that I would choose the latter but I have days where I don't want to bothered, I want to do my own thing. Not to dwell on what is happening but, to be who I am with what I have. I don't know if that makes sense to anyone but it is about the best description I can think of at the moment. *********************************************************** I don't actually celebrate my zipperversary, however, I do think that it is important to acknowledge life changing events ...and this was a big one! I chose decompression because it was my only option. My original syrinx was from C3 to T10 and had forced my spine to stretch to over 7cm wide in some areas ...that is as painful as it sounds. With all of that fluid inside of my spine, it was damaging nerves, which is an issue that will be with me always. I still have syrinx in my cervical spine. It is painful. I cope the best way that I know how. Which I feel is pretty well considering all of the nasty symptoms. My last surgery was on 9/24/14 to decompress for syringomyelia and a Chiari Zero. The pain and pressure I felt in the back of my head has increased and spread to the sides of my head around my ears, lower portion of my face, and up to the crown of my head. Pain medications and muscle relaxers do nothing for this pain. It is extremely difficult to lay down, or even lean back in a chair for that matter. Not everybody has this experience; it is common for Chiari patients to have improvements in pain levels after this surgery, unfortunately, that was not the case for me. My last option is to have steroid injections into the muscles of my shoulders, sides of neck, and around my occipital bone on the back of my head (of which a portion of this bone was removed during my last surgery. *********************************************************** I was wondering, for all of you with syringomyelia, have any of you had syringobulbia? This is a syrinx in the brain stem. I had one. Wondering if that is why that area is always overflowing with pain. I have not heard of anyone having one and found that only 3-5% of syringomyelia patients experience this. I jokingly tell people that I am just trying to stand out, the rarest of the rare. Blah. Blah. ************************************************************* My pain has brought me down. Although I mentally fight to remain strong and positive, this has been a time of weakness for me. Extreme pain has led to slight depression, fear, and frustration with myself as well as others. I don't tolerate a lot of noise or being irritated very well. Some times leading me to choose being alone over being around others. I put on a happy face, attempting to make things better for my family. Having multiple illnesses is hard and wears on my mind and my heart, heavy and unmoving. I've worked hard to take control of these emotions. Allowing these feeling to be felt, without living in them. That's important. ************************************************************** I don't want this to come off sounding like I am an unhappy person, overall, I have a positive attitude, and am generally happy. I do my best to avoid thoughts that bury me in sadness and anger, which isn't always easily accomplished, but I feel that I succeed more often than fail. Those negative feelings are like an illness in themselves, weighing you down and creating an atmosphere that is extremely difficult to escape ...you can not heal,enjoy the days that are good to you, or see the sun with that anchor tied to your heart. ************************************************************************************************** On a more positive note ...I am still writing. When I find the time, anyways. I have a novel that has been in the works since January or so and a collection of poetry that I am excited to put together. Having the one poem published last year in the Cogs of Time 2 anthology was a great experience that I can not wait to do on my own! I am hoping that once school starts, I will have the time I need to make this happen before the end of this year. Fingers crossed and looking to the sky for guidance. ********************************************************* As summer winds down, I look forward to the temperatures cooling off a bit and allowing me to spend more time outdoors. I have found that this Kansas heat is no better for my joints than the cold is. I have dubbed my self the "Tin-(wo)man" due to my increasing inability to move freely and smoothly. I joke about needing a can of oil to get moving. I am unable to turn my head, so I move my whole body to look around, I find that I miss a lot of what is going on around me, but my husband is really good about telling me what he sees in order to keep me comfortable. What a sweetheart! *********************************************************** For most people it is lunch time, or they have already had lunch ...for me, this is still morning and I haven't had breakfast yet. It is 1:45pm here and I am sitting on the couch with my laptop while sipping coffee. My faithful friend, Bentley, is by my side, always encouraging me to rub his belly. I truly believe that dogs improve your life and add happiness to the lives of everyone around them ...healing our mental and emotional wounds by loving us through anything. *********************************************************************************************************************** Take care of yourselves and each other! Reserve your spoons for a little "you" time every chance you get! Do something that makes you smile, inside and out ...it is good for easing pain, even if it is temporary :) ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ I wish you plenty …of love, understanding, support, spoons, and dreams come true! ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Thank you for reading my post, if you enjoyed it, found it helpful, or know someone who is living this way and think this may help them ...please feel free to share this blog :)

Let's make this life a little easier for ourselves!

Today was such a beautiful day, I couldn't believe it was almost 70 degrees! I would love to have been able to be outside enjoying the day but we were busy trying to get things ready for the kids sleepover and cookout. Of course all of this is a struggle for me, but I do my best to hide it...except for the asthma attack that hits while I'm drying my hair. I was able to get it under control, but then my head began to hurt so badly, I felt that I wasn't going to win no matter what I did today.

My neck feels like it has a pinched nerve. However, rather than effecting one side, it catches on both my left and right sides; causing excruciating pain in my head, neck, shoulders, and down both arms and into my hands. Along with this wonderful new symptom that prevents me from raising my arms, my arms fall asleep all of the time; not just when I raise them, but when I use them. Period.

So I have been doing some reading this week on the World Arnold Chiari Malformation Association website, I found some information that I wanted to share about ways that have been found to help around the house. I don't know about any of you, but when it comes to chores, I pay for anything that I do with several days of misery. I hope that you can find something helpful, If you have found ways to do things that make your life easier, please feel free to share it in the comments, I'd love to hear from you!

http://community.pressenter.net/~wacma/pamshints.htmenjoy

I know that I have to set limits for myself. I can only do one "house chore" per day. Sometimes that chore is my shower, if it's a bad day...The old me would do everything in one day, get it over with, and have the rest of the week to enjoy a clean house, my new normal, means picking and choosing new priorities. If I don't feel good enough to hand in a spoon and do something around the house, then I don't.

I am writing as much as possible. My mind never stops creating! I'm constantly thinking about what my characters should be doing, new characters, new story ideas, new ideas for poems, and it is rare to find me without a notebook in hand :) I'm excited for my book to release in June. Nothing makes me feel more like "me" than when I am writing. Have you found your souls happiness? That "something" that makes you feel whole. It certainly doesn't erase my pain, but for just awhile, It's not the first thing on my mind.
Although we live in pain, each of us still have so much to offer this world, YOU ARE UNLIMITED!

I always try to give myself the choice of having a better day than my body may be willing to provide. But I wasn't able to do this until I found some level of acceptance for the illnesses that I have, the pain that I endure, and the future that is unknown.

I wish you plenty...love, understanding, comfort, and dreams come true!


(((Gentle Hugs)))


Monica Reents








 

Painsomnia...it exists

Last night was a long, painful, sleepless night.


In the world of chronic pain sufferers, this is referred to
as, painsomnia: insomnia due to pain. On these nights, my dreams are so vivid and real which always seems strange to me since I don't sleep for more than an hour or so at a time. Last night, I dreamt of death. It wasn't mine but I could have prevented it, I was preoccupied. I woke up in a jolt.

I don't know much about dream analogy, however, in considering my thoughts and choices lately...
I think that dream was about the death of who I was, "my past life, before the diagnosis", and my preoccupation was with my current choices...to move on, to choose life and my dreams over hanging on to a life that is no longer an option. After four years, I really feel ok letting that part of me go, I feel as if I have a new set of chances to take and I am not afraid to face them.

Do you have issues with painsomnia? How do you handle it? Have you found a way that allows you to rest through the pain? Personally, I have to get out of bed. The pressure against my body, when lying down, is just too painful and effects me physically, mentally, and emotionally. I will spend the rest of the day nodding off from exhaustion and hoping that tonight will not be a repeat of last night.

Have a good Sunday and do something that makes you happy!

I wish you plenty...of support, patience, love, & spoons!


((((Gentle Hugs))))



Monica Reents