I Said…Nothing…

Last week was Spring Break…and I had one ambition…to do nothing…well…I was going with Mama to a doctor’s appointment…and then…nothing…nada

Or at least that’s what I told anyone who asked…but…of course it wasn’t true…I had plans…I wanted to write…I wanted to work in the yard…I wanted to play a bit…there was stuff I really wanted to do…most of it just would take place at home…without a tight schedule…

Except…somebody…somewhere…must have taken me literally…because after a nice little stroll in the park…under some beautiful Bradford Pear trees…the most activity I had for the rest of the break…was covering my mouth when I coughed and sneezed…and applying eye drops…

Bertha…laughed…as much as she could at someone with red, swollen eyes that looked like something out of the horror movie…Nightmare on Bradford Pear Street

Anyway…she pointed out…that she’s been telling me for years…to say what I mean…to ask for what I really want…because…case in point…I just might get it…

And…she’s absolutely right…I had pretty much the exact week I told everyone I wanted…nothing…and…yesterday…when I thought I was going to be well enough to do a few things…wrong…I felt even worse than I had the day before…ensuring…that I did…nothing

So…have I learned my lesson…I hope so…I hope next time someone asks me what I’m planning to do…that I won’t say…nothing…unless…that’s what I really mean…and…trust me…it probably isn’t…

Jane

Hello Chiari…It’s Me…Jane…

Yesterday…wasn’t my best day…I woke up still feeling kind of…fuzzy headedwhich had nothing to do with my coiffure…although…now that I think about it…that would have applied as well…

It had all to do with the fact…that a passing weather front had decided to…stop and stay for a few hours…which…sometimes…activates…my Chiari symptoms…

Thankfully…those pesky fronts…rarely cause the headaches that they did before my decompression surgery two and a half years ago…it’s more of a feeling…that…anything…and…everything…is just too much trouble…

The bed went unmade…the blog unwritten…the dishes unwashed…and…I rested until early afternoon…when…the rain came and the temperature dropped…and…suddenly I felt great again…

But…the bed went unmade…the blog unwritten…the dishes unwashed…well…I had made it that far into the day without doing them…I didn’t see the point in starting then…and I had other…fish to fry…as Mama would say…

I’m writing this today…because…there isn’t a lot of information about recovery from…Chiari I Malformation…and…that’s partly because…until a few years ago…many people…doctors included…had never even heard of it…although with MRIs…it is becoming a more common diagnosis…so…there hasn’t been time for a lot of studies and research into the long term effects…

The other reason…is that there is no one predictable course…everyone is different…as would be expected considering the nerve damage the Chiari causes…also…any co-existing conditions the patient might have…

I get numerous hits on my blog…from people who are seeking information…what to expect from surgery…what to expect in recovery…what to expect from life…

I will say for those of you who are seeking such information…my herniation was significant…35mm…all the way to T-1…and I had a thin syrinx from C-1 to C-7…I was 56 years old…my primary symptoms were…headaches…numbness of my face, arms, and hands…and increasing episodes of choking…and overall just not feeling quite right…the syrinx was detected by a Chiropractor who was looking for a ruptured cervical disc…I then went to a Neurosurgeon for treatment and decompression surgery…

I would love to be able to tell you what to expect…however…I can only share my own experience…which has been remarkable by many standards…but…slow and cantankerous…by mine…

I think…I know…I wanted it to be like my tonsillectomy…once it was done…my throat was sore for a few days…and then…I was back to my old self…

But…it didn’t happen that way…I guess…it’s just not the same with…brain tonsils…I was off work for three months…and…honestly didn’t feel like going back then…but…I did…knowing that I only had to survive two months before having…two months off for the summer…I ended up working four days a week…for the remainder of the school year…

For the first six months or so following surgery…I had a low grade fever…every day…which was controlled by taking ibuprofen…we never found a cause for it…no infection…or anything like that…probably just my brain parts readjusting to having a bit more room…

For the first year…I also had almost constant…low grade nausea…and craved…carbs…and…ice cream…which wasn’t the diet I’d planned for weight loss

The next year was better…but…I continued to be exhausted…not even having the energy to exercise…as I had hoped to do…

Last summer…I went gluten and sugar free…and started to feel better…this past year was a much better year…I had more energy…my thought process cleared…well…as clear as it will probably get…LOL…and…I felt like a person again…I was able to begin an exercise program…and although I didn’t push myself…I did exercise…

I continue to have some numbness mostly of my right arm…but…it’s not severe…I can deal with it…my neck gets tired when I sit at the computer for too long…which is almost every day…between writing and working as a school nurse…but…I’m learning to take breaks and change positions often…which helps…

Overall…this summer has been wonderful…with the exception of a few…weather days…I feel good…I’m enjoying life again…I just released my second book…Becoming Bertha…and am considering what to write next…sometimes…I think I should write about…Chiari…but…then again…I just did…

Jane

PS…please feel free to leave comments or contact me via the contact page…if you have questions…