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 :)