2017-Broken neck blessing

In 2017, I found a new doctor, and had set up an appointment with him, because I needed an annual recheck, as well as my arm was back to zinging more than it had been consistently, in a long time. We were 13 days away from that appointment, when we were rear-ended a mile from the hospital our daughter was scheduled for surgery at. She had broken her arm for the second time in 5 months, and needed rods. Thankfully, we weren't rear-ended at highway speeds, because it was stop and go traffic. We heard tires screeching, and knew we were going to be hit (as adults, our daughter was surprised by it). Instantly I felt my neck break, plus it made that undeniable sound, that only people who have experienced it understand. The officer that responded, was very upset I wouldn't take an ambulance from the scene. We had already called the hospital to let them know we were going to be late for check in, so they were very upset I wouldn't go straight to the ER at that point too. My neck had never broken before, and though we didn't know it then, it wasn't a true break, but it did finish my unhealed fusion off, which is similar to a break due to it being donor bone grafted with my bone. I was refusing to be seen until my daughter was in surgery, because as much as the break sensation was new, all the symptoms of previous neck issues prior to surgery were the same. I knew how to deal with it.

We ended up fighting for quite a bit on this new neck damage, because the place that had failed me in 2014 insisted there wasn't new damage, despite there being severe damage and side effects. Thankfully, I had that new doctor who had been recommended based on me having a great conversation with someone whose scans matched what I had wanted surgically since the beginning, but couldn't get approved before. He believed me, he saw all the changes, and showed us there was a bone spur that would have also had to be fixed, even if the fusion hadn't failed, as well as another level being bad that the other clinic had missed. I was going into surgery, and they would be fixing three things, not one.

On the day of surgery, he completely changed the type of fusion he was going to use, without prior authorization, because it would give me the best outcome. I ended up being completely brace free in under 2 weeks from that surgery. He had wanted me to be brace free right away, but it was too difficult at first due to how much my neck had atrophied from the break. I could move my neck into healthy posture, without any problems. That alone made me cry tears of joy frequently. He gave me instructions that were harder than anyone had allowed me to work after all of the previous three surgeries, and knowing I could push my limits like that, was mentally renewing as well. I was able to chew within a few weeks, instead of months like the previous surgery. I was active, and focused again, and back to feeling as normal as I could, after years of needing more care than people knew.
That being said, there are some disclaimers I should add in here. First, with each surgery I have a three to six month window, where the internal swelling or healing masks quite a bit, before it suddenly settles into what will be the new normal. Once it does settle, it isn't always horrible, but it does always shift my activity level or abilities backwards for a brief time, while I learn how to gauge what all I can do before hitting the point I would need to take my medicine. Due to this shift, I often hear people ask me how I was doing so well, and then seemed to stop. I didn't stop, it's just a temporary shift, and sometimes I don't have the thought process to phrase it like this. Also, if I am having a good day going into my follow ups, I often forget to mention new long term problems that have occured, so not all of my symptoms are charted unless I bring Colin with, because he makes lists for me, and I appreciate that detail. Second, active for me isn't normal people active, but I am pushing that as much as possible now too, since I was encouraged to do so by my doctor. When I say I was active, I went from around 500 steps a day during my neck being broken, to surgery, to over 1,000, then 2,500, then up to 5,000 once a week. I was averaging 2,500 at least three days though, which was huge progress. I know that doesn't put me in healthy range, but I was talking, chewing, driving, and doing more with my family than I had been in a long time, so overall it was huge.

I really have been living differently after three to seven years of limits. I have more side effects if I push it too much, but I can typically focus and handle details I couldn't before due to pain levels and emotional turmoil. I have been enjoying life, even on bad days. I have been doing better as a mom and wife, as well as spiritually changing back to aspects of who I was personality wise as well as actual spiritual discipline that isn't perfect, but many are noticing the differences in all 5 of us as a whole.

I am a walking miracle, and I don't know what the future holds, or how long things will be ok or unchanged, but I love that I get the chance to do as much as possible, as often as possible. I still have to rest 2-3 days a week, and sometimes I have to avoid phone calls or talking to help my body recover, but I'm not paralyzed, I'm not dead, and I can do more than I had been able to do in years. Many who hear parts of my story, or get concerned if I post about a bad day, don't always understand this full story. I'm extremely grateful for all the people who came alongside us and helped with the kids, or other elements during my healing. We so needed them for so many reasons, and even if it was short term help, it was big at the time.

2014-2016

I haven't kept this updated like I should have, and yet a lot has changed. In 2014 our year was very chaotic in all the things we were dealing with. My neck went bad either in the beginning of Feb, or the beginning of March. We didn't notice, because there was so much else at that time to focus on. Fast forward to Aug.

In Aug we tend to help set up a local church's massive rummage sale, and I especially love getting there to help when things are really off, because it's so consistent. We see old friends, we know the work very well, and it's a great place to rest mentally, even though you are physically working.

The first day we were there, We didn't stay very long, maybe an hour and a half, but for some reason, I was in the worst pain I had felt in a long time. The previous year didn't hurt my arm or neck like this, despite being fresh off of gall bladder and hernia surgeries. Nothing helped the pain. I was doing all I could. This is when we knew I needed new scans, and that we would be looking at more neck surgery. The process the provider who had done my previous 2 made me go through however, almost caused my death (we just didn't know that for almost 2 more months). Instead of doing scans asap, they made me wait for an appointment, which was almost 8 weeks after my call. Due to the previous surgeries, and knowing something major was probably wrong, that was a horrible call. After my scans, the doctor who made me perform physical tests I also shouldn't have been asked due to my previous fusions, said my scans were normal. Neurology always has to review my scans, and when they saw them, they were very panicked over the results. They had me approved for emergency surgery before I arrived in office for them to confirm my scan results with the minor physical tests. The appointment was spent telling me all the things that were almost a guarantee to go wrong from this surgery, but that there was nothing I could do because I had less than 2mm left to my spinal cord. I would not drive again, talk again without permanent laryngitis (because there was no way he could avoid the vocal nerve to get to the level he had to work on), I would have almost no range of motion left to my neck, I would have a scar from under my chin to the bottom of my neck (he wouldn't be able to go between my present scars), I wouldn't be able to walk a 5k any more, and the overall risks beyond these things were very high. I focused only on things like my pre-op physicial, instead of all that was said, because I would have completely panicked and melted down if I allowed myself to think.

Surgery was 4 days after hearing all this, and was going to cost us a couple months of income to do. When I woke up from surgery, I was shocked, because I heard my normal voice. I didn't actually believe others could hear my normal voice at first, I just figured it was me not wanting to accept that it was different. When they made me get up to walk, the bandages weren't any bigger than my previous surgeries, and definitely weren't my whole neck. Being fresh out of surgery, I couldn't test the other elements, but I was very excited.

As I healed, I was able to still have some motion to my neck, and I could still drive. Granted my driving was more limited than before for distance, due to not moving my neck very well, it was better than the never. Within a year of my surgery, all my checkups I had been told I was healing fine. It would take until my neck broke in 2017 (see next blog) to find out I never healed at all. For 3 years I battled severe pain and physical limitations. I couldn't even attempt to move my head from basically "text neck" position, because I would start to black out. Talking too much (which could be as little as 15 min at a time), would cause me to start coughing, or struggle to breathe, because my fusion was hitting my windpipe (and yes you can feel that clearly). I would have moments where I couldn't form sentences, or use words that were regularly in my vocabulary, because it was similar to how stroke patients appear to struggle, where they know the word, but can't get it said. Throughout all of these scary, and very difficult symptoms, I was told I was healing fine, there was no reason for me to have these issues, it was all in my head. Continuously being lied to like that made me extremely depressed. I kept pushing myself physically, believing I was my own problem, because I wasn't doing enough, when really I was doing all I could, I was just lied to.

In 2016 I had tripped, but not fallen, and it exaggerated all my symptoms. I was hospitalized for 3 days while they ran all the tests and scans possible. Physically I kept failing things I should have passed, but my scans were clear. They could have told me then that my fusion had failed; they didn't. They kept on lying to me that I was fine, so I kept doing everything I could, even if I needed more meds (which I typically refuse to take more than a few times a month, and only at bed, so they wouldn't interfere in my ability to parent and be with my children). I refused to give up. I still did at least one 5k a year, sometimes more, I didn't let people know how much I was struggling, or how hard being normal in bursts truly took for me in those 3 years. Mostly, because I needed to be ok. I needed to have as much normal as I could, because mentally I wasn't coping well at all. I couldn't even clean my house even semi-normally, and for someone who loves to clean and keep things mostly maintained, that alone was huge mentally.

For almost 3 months post surgery, I couldn't chew, so I lived on smoothies and soup, and I hate soup. I have come to enjoy it a bit more now, but it was a food I typically avoided as often as possible. On the worst days, I would have to go back to not chewing, which caused a lot of weight gain. I couldn't exercise anywhere near what I could before, or be as active around the house cleaning like before, plus I couldn't chew up to half the time, so my mainly veggie and fruit diet was gone other than smoothies. I also lost my spiritual discipline in this, which caused problems in a few areas for our family as well. By 2016 though, we knew things were off, and needed refocus and more discipline. We didn't get completely back to previous normals, but things did start shifting with the improvements.