Howdy Hydrocephalus

Understanding my unique gyroscope


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Back on the writing bandwagon!

images-8It has been an really long time since I have written. I have not fallen off the planet, but have been challenging myself even further. Even though I love to write, there are many other things I have been focussing on such as creating art, graphics, starting a small very part time graphic design and creative life coaching business. I am unable to fit them all into my life at the moment. One day soon I will be able too! It is a goal I am working on.

My life has been changed since September to end of December. I had amazing energy, concentration and steps to move forward. I was able to attend  two craft shows and make for me a lot of goods. Christmas and the New Year were a success. I got everything done for the family, rested & played too! But then January 1st, I woke up with the worst cold ever. From January to now has been an interesting month. I have learned some takeaways about Hydrocephalus that I did not know before. Because of my new knowledge, I have finally decided to work with the Hydro instead of fight it in this case. Fighting it will only make it worse.

So What did I learn? I learned that if there is a stressor on my body like a cold or a completely blocked sinus (with a mass that potentially they think means trip to Foothills again soon) can affect the baseline of your hydrocephalus. So what does this mean.

fb_img_1443293628775My MRI showed that I had amazing flow. I love that my Dr. Sits me down and we look at the images. I love that he explains what I am seeing. He said the grey area where my hole from bottom of 3rd ventricle show cloudy grey. He said that was turbidity. I said “that is to be expected. When flow of fluid has to go from big space down a narrow tube – it speeds up – basic physics…you know my background before all this was science!:”  I almost knocked myself off my chair when this came out of my mouth. I was shocked as shit that my brain just pulled off something that I thought was long gone.  Nope just in hibernation waiting for my neural re-connection.

Distracted Side note Inserted here:

The black hole of my brain injury released some new information. Lately I have been experiencing this more and more…snippets of old knowledge and experiences pop into my head.  I wlll write a blog post of what I can compare this to in hopes that it can help fellow TBIers but their experiences into words.

images-5So my new baseline was how awesome I was doing before feeling cruddy in January. This means that until my stressors on my body…the blocked sinus thingy will continue to put negative stress on my hydrocephalus until it gets addressed. So in the mean time I will experience and increase sleepiness, tripping, falling, dropping (or accidentally throwing items), weird walking stance, numbness, tingling, head pressure, pain, and cognitive decline. I have been having a hard time figuring processes, and steps to getting things done again. Decline in remembering what to do with Adobe Illustrator again. I have been saying the wrong words for things more and more. For example for the last month I have kept telling the boys to put their laundry in the dishwasher.  

images-2You know that gets old quickly when you have two parrots who are like okay and start to put their dirty laundry in the dishwasher. My kids are jokers I say…but when I am stressed mentally with the weird symptoms that have popped up in my life, my sense of humour is greatly diminished. Actually irritability, and anger have popped their dragon heads up again so much that the boys have noticed. They joke that driving with mom is like “beepidty boop boop beeep” with the added family finger.

kitty-fingerI have been reassured that symptoms, although scary will go away once the stressor is fixed.

Let’s hope this happens quick before my control and filter completely disappears and I actually tell off a stranger who is pissing me off.

 

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Brain Rest

Well last week, I successfully worked rest into the schedule.  Yup – three out of four in the house got the flu really bad.  Chris ended up looking after the kidlets so I ended up just having an iffy day of not feeling right instead of the full-out flu.  I was on clean up and laundry duty instead of kid puking all night duty. So when the household is down and out; I slowed down too!  The week was filled with rest among the sickness!  With some brain R&R, I noticed that I was remembering more and feeling totally on the ball with everything.  My head didn’t hurt as much as well too!

On Saturday we were all finally better so we went to our first family movie together – Wreck it Ralph.  This was my first 3D movie. It was a little loud in parts – especially the commercials in the beginning (deafening).  There were a couple of the scenes that appeared fast moving and was really surreal for me to watch.  I enjoyed the movie and I especially enjoyed hanging out with the family unit.  But when I got home, I didn’t realize how tired I was and I all I wanted to do was sleep.  Can you say – Overstimulation – my processor was overloaded!  We went to a friend’s house for dinner the next day and I think my brain still hadn’t recovered from the movie and me  swinging at the playground earlier that day.  My head hurt, when I talked the words were in my head but they weren’t coming out easily or I was forgetting things again. I was feeling disconnected!

All that progress and it so easily took a big step back when my brain was overstimulated.  Who would have thought.  My body wasn’t tired, but the brain was.  There is this crazy  disconnect between my brain & body; and Brain within brain for me to get a message at times.  It is like the brain is no longer in the loop to tell me it’s limits until it is too late.  But will that stop me from life – hell no!  I just have to figure out where and when to take the downtime to recover to feel normal.  I also need to prepare myself when we go out to visit so I have enough rest before and after.

In 2011 I had participated with a group of photographers on Facebook to create your own album cover.  I submitted Road to Relaxation. So fitting as this is a learning experience to really come to terms with the word “Relaxation”; to throw out the my misconception that “Relaxation” means you are lazy or procrastinating; to embrace that “Relaxation” now is not an option but is required for me to allow my brain its extra recovery time so I can function normally.  All I need to remember to heed my own words!


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Foothills Diverted

I am happy that I didn’t have to make another trip to Foothills Hospital early this morning.  Two days ago, I had flu-like symptoms that can mimic a complication.  I was re-assured the next day when my youngest was experiencing the same thing.  Don’t get me wrong, I never wish sickness on anyone, but it was it did make me feel better knowing that I wasn’t experiencing a complication. That was until last night around 9:30pm, when I felt that I was in an elevator falling quickly and I was sitting on the couch watching trashy TV.

I got up and keeping my balance was like being on a pirate ship during a storm, so it was not easy.  I went to the bathroom to brush my teeth and kept dropping everything I was trying to pick up.  I am trying not to panic – I just want to go to bed and sleep.  Two hours later we are in emergency.  My body has not settled down.  My head feels like it is being held up on a toothpick & my world is not spinning, but is very unstable.  I keep losing balance to the right.  Emergency appears to be fairly quiet and I still wait for an hour before the emerg doc to see me.  this is what I look like.  I had Chris take a picture because I couldn’t keep my eyes open, couldn’t concentrate and my blood pressure which is normally around 109/70 was as high as 158/90 (damn BP monitor hurt every time it too my pressure).

Feeling like I could just go out and party

The Doc is the one who in a previous visit shoved something so hard up my nose it made it bleed and told me that there was nothing wrong with me.  That it was sinuses and should not be in emergency but to see my GP instead.  I was there after having a major pain, pressure to my head and clear fluid come from my nose. Nice now I know why I waited an hour, the dude doesn’t want to see me.  So he is all like “I know you…you have congenital hydrocephalus…did you know all your life…etc….”  Chris is ready to pummel him.  Chris explains everything.  I did say that “he did see me and not treat me very well”.

We have to rule out the big things: brain infection, meningitis, brain bleed, potential of ETV closure or partial closure.  So I get blood drawn, Have another CT scan (an added 146 days of radiation to my body).  So I am clear of the two.  The doc doesn’t really know about the ETV stuff.  He comes in and admits that five doctors had all the information in front of them and didn’t put the puzzle pieces together.  The doc is all apologetic and nervous now – fucker!     I am given Tylenol and some anti-puking medicine.  After about an hour, my world is no longer falling like an elevator or being on a ship on rough seas, but I am a little unstable.

There is no info on the system about what to do if I am experiencing symptoms.  Chris says that I am supposed be transported to Foothills hospital, but I am not too sure if I should go.  We agree to go home and call the Hydrocephalus clinic.  If I am experiencing a partial closure, it is not harm me right away; I am still getting flow.  The doc looked at my eyes and saw pulsating veins.  So we call the clinic the next day and the doc there thinks it could just be my body acting weird because of getting used to having CSF flowing and having fighting a virus may have thrown my machine for a loop.  But he said to continue to monitor.  If symptoms get worse then drive to Foothills.  As much as I like the amazing nurses, doctors and quality of care at Foothills, I do not want to make a second appearance there.

Today has been a bed day…I hate daytime TV…it sucks!  I need to go find my crafty crap –  if only I have the energy to go downstairs to get it…can you say stir crazy.