Well it’s been quite some time since I’ve typed anything on here. I’ve been busy with my project trying to help other Chiarians share their journey through their own Chiari and making a couple of videos for those who requested one and just trying to get that up and going. I think it will be a wonderful way to give Chiarians a voice, raise awareness and finally put faces, pictures and lives to a diagnosis that is so poorly misunderstood. Please be sure to read these inspiring, courageous stories titled “Living Life Under Pressure…”
Other than that not a lot has happened unless you consider medical problems a lot. It seems like anymore I’m just getting used to it, but every now and then it becomes overwhelming such as today…
After my 2nd RFA treatment I wasn’t doing to bad and we (the doctor and I) decided to move ahead with 2 more treatments. The ultimate goal of these treatments was to relieves the constant pain in my cervical spine from so many surgeries and nerve damage and hopefully be able to help me not have to take so much medication. That is my ultimate goal, less pain and less medication. I finally found a neurologist I thought I had liked. He was finally able to explain the nerve damage on my right side to where I understood it. I felt like I finally I’ve caught a break. Then during my exam he noticed some of my symptoms I was explaining were not brain/Chiari related but rather might have something to do with my heart.
After leaving that appointment I usually am calm when it comes to things that happen to me, I always am worrier when it’s happening to the ones I love but this time I was in a big panic… first my brain, then my kidneys and now my heart!! I just finished the entire kidney testing which I won’t get back until December and now I was off to a whole new word with heart tests.
As if matters couldn’t get any worse last week when I took the worst fall since before my first Chiari brain surgery, on top of everything to fall on I fell on my head. I was leaning over the bed after my phone dropped off the night stand. I thought I could reach it without happening to get up. Well when I went to lean over I got the biggest head rush and fell forward I mistrusted the use of my right arm (the side that has nerve damage) trying to catch myself and I landed on top of my head coming down on my face and neck (left side).
At first the pain didn’t hit me but as the day went on I realized just how bad it was. The following day I called my neurologist asking them what I should do and immediately suggested I go to the ER. There the doctors seemed pretty clueless at how to treat me, they did a CT scan, I asked about an MRI since with Chiari you can always tell much better with that type of scan and all day they just pumped me with fluid and pain meds. The following couple of days all I did was sleep through the pain. Until Thursday it was still so unbearable I went back to the ER with a call from my neurologist giving them instructions on how he wanted my care dealt with.
On Friday I was home and still dealing with the side effects from the fall and how it aggravated my Chiari so much. I stood up from my bed and the bedroom was spinning around me sooo fast. I tried to grab my bed, but grabbed mid-air and fell face first into my walker. I hit my chin on the center of it and felt the snap in my neck. I can honestly say that was the worst sound I’d ever head. I’ve heard bones break in my body before but knowing just how serious it is to hit my head and to hear the snap I just threw up. I hit my chest and have some bruises there and on the right side of my face I also hit the walker and it is a little puffy and sore.
I go tomorrow for an EEG and then next week for an MRI of my brain and C-spine. I just pray it all comes back ok. None of the medication is helping, they have had me on the strongest oral meds and the pain is just unbearable. They have now prescribed me a pain patch. This is not where I wanted to go with less medications and I can’t get into see my pain management doctor until the first week of December. However, since putting on the patch my pain level has gone down some.
I’ve told my therapist in the past that every good day I have, even if I still have a little bit of pain on this day it gets me through this, it reminds me why it is all worth it, it gives me the strength to keep going. Just one day is all it takes for me. I so desperately need that one day, just one. I know that probably sounds really silly to most of you, but when you live with a condition that is every day, 24/7 it becomes so exhausting and I’m just really tired and my body just feels very weak right now and I just really need my one day.
I hope to keep my group going on Facebook and help other Chiarians share their story. I created the group to give Chiarians the opportunity to be able to share their story, raise their voice to the world to what has been happening to them as a way to help raise Chiari awareness but as time went on I’m so happy to see it’s also become a place of support for one another.
I pray that everything with my tests results come out ok. I have lost track of all of them that I have to follow-up with to be honest with you. I pray for my fellow Chiarians I know who are going through a lot of struggles of their own and hope that they can find answers and treatments and be on the road to recovery.
I don’t often say this but I just want to thank my family and my friends, you know who are you, for being so supportive for me through all of this. I know I fight back and act like I don’t need your help, that I can do it myself but the truth is with each passing day, the more and more I’m realizing I can’t do it anymore by myself and it’s been really hard for me to admit that, to come to terms with that. I’ve been trying so hard in my own ways to let go of the life I pictured for myself at this time in my life and it’s just so hard to let it go, but I’m trying and if I don’t say it enough I appreciate everything you do for me
I hope you all have a Happy Thanksgiving with your friends and family, be thankful for the ones in your life and the blessings you have. Don’t take anything for granted <3