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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The Wandering Nerve

kelly dec 2014 234 I had originally been told that I had neurogenic stuttering due to my brain injury. The stuttering began at the end of June in 2012. I guess the increased pressure from my hydrocephalus had damaged my language centres enough for the stuttering to begin. When I was released from rehab, I began speech therapy at the Medicine Hat Hospital. It was there I worked with some great therapists. We worked on speech techniques, word finding, categorization and a variety of other speech related things to do with muscle control and rhythm. I remember that I learned of one the two damaged cranial nerves that was affecting my speech. The Vagus (wandering nerve or tenth cranial nerve) is important for many functions other than speech such as heart rate, sweating, digestion and blood pressure (mmm so many answers are now coming to light).

A damaged vagus nerve can cause issues with muscle control and swallowing in the mouth and neck. I am no expert at any of this but it was explained to me simply that speech comes from the brain figuring out word to diaphragm with the air flow up, to voice box (larynx) where the vocal cords vibrate. From there the sound then is resonated into nose, mouth area. Speech can be disrupted anywhere along the process. I know that I still have trouble swallowing quickly and sometimes choke on water etc…if I drink or eat to quickly. I have noticed this more since I had SJS as my mouth was so beat up and sensitive with blisters, open wounds. It feels like there is a large marble around my adams apple. I am guessing that I have muscle weakness and lack of control on the right side of my neck and mouth that was similar to every where else on my right side. As part of my therapy I had to work on my breathing, hold my hand up on my neck and face to feel certain muscle movements when I said certain words. I know that my stutter comes out with certain letters or letter groupings. It also can come out when stressed, overwhelmed, sick or if I am stuck with the cognitive process of what I wanted to say. Thus I love social media or online interaction more than in person.

kelly dec 2014 118Along with speech therapy, I also attended an Aphasia group at the mall that was run by the speech therapists at the hospital. This was a very good group because we played games and did activities that not only worked on speaking but on word finding, grouping of words and rhythm of having a conversation again.

I had started out with really one word answers of either “fine” or “good” for my conversation depth and breadth. Then I was able to pre-plan a sentence that I would knew would get a person talking so then I wouldn’t have to talk anymore.  From there the amount of pre-planned sentences went up. I would also have a stash of questions to ask. I knew if I asked questions, I would not have to talk much and lessen the chances of me having to stutter. This went on until about mid-way last year.  I stopped going to speech and began going to the Brain Injury Re-Learning Service (BIRS is a part of REDI enterprises), the big red building with paper planes flying. We began cognitive, memory, visual-spatial, awareness and attention rehabilitation. By the end of last year my speech had improved greatly. My stutter was almost non-existent and the biggest thing that no one probably noticed was that I was having conversations that were less and less planned. I was able to be more spontaneous and talk more freely. I had volunteered with the Kindergarten class to help with reading January 2014. I remember reading the Dr. Seus book “Mr. Brown Can moo, Can you?” So everything was going along just perfectly with no verbal glitches. The kids were repeating all the sounds in the book. I was having a great time until and then I got verbally stuck on a word. Here I was stuttering on a stuck word with 16 kindergartners repeating the sounds as they thought it was a part of the book.  Both the teacher and teaching assistant are cracking up at the back of the room and I am now cracking up laughing with my little parrots doing the  same thing. I had tears running down my face as it was so funny and priceless. I loved those kids, they just went with the flow, like I did!

kelly dec 2014 396I think the reasons for my improvement are re-connection of brain pathways due to neuroplasticity, lots of practicing in front of mirror, breathing exercises, word finding exercises, luminosity, word puzzles, boggle, volunteering, helping my kids read, helping my kids with their homework (last year I found some grade two homework hard), speech therapy, Aphasia group, BIRS, becoming slightly more cognitively aware, not giving up, not being afraid of failure, time (as slow as this process is), getting pissed off, frustrated and not settling for a brain injured status quo. I am have also been helped by the wonderful support that I have found on Twitter. There are so many people that I have connected to. Just supporting one another with ideas, suggestions and strategies has been very meaningful for me. Some days my fellow #TBI #ABI tweeters are the only people outside my family I connect with. I was fortunate to meet up with the founder of #ABIchat. This is an online support group on Twitter that I have participated a couple of times to.  I just need to find out when the chats are again (in the brain and out the brain syndrome). I really think healing and recovery of the brain is being re-defined.  Hearing from other high-functioning brain injured people has given me hope that I will find my niche and happy place being a productive member of society again. It really bothers me of the negative stereotypes and judgements that happen when you are labelled disabled and on disability as a form of income. The flippant comments and the poor treatment is often jaw dropping. I know that I shouldn’t let the comments hurt but they do. And it is often just general comments from people who do not even know that I am on disability. I have kept that mostly to my self and immediate family until today. I have to just shake my head and wonder what education level and knowledge where the people with these comments are coming from. I have to remind myself that it is not me but them that is broken.


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Snake skin

When you have Stevens-Johnson Syndrome (SJS) your skin gets all irritated, bumps that turn to blisters, then scab and look gross. It also means burning hot skin that peels off like you have a sunburn or are like a snake. I feel like I am snake. my calfs burn and face peels. When I go into the hot tub, the jets affect my skin and it can hurt after a short time.

I have been improving! my mouth just feels like a cheese grater and goes in waves of being sensitive but it is no longer a bloody gross mess. I have a dentist appointment coming up and cringe as to what he is going to say.

my face is still bumpy but not as much. I finished my Benadryl and now down to eight prednisone pills a day. In eight weeks I should be off the pills and my adrenal system working again – fingers crossed!!!!

I have a brain injury appointment again near the end of the month and we are hopefully going to be allowed to do Botox to help with the headaches as the pain has come back. I am 24/7 at a pain level 6 or 7. But what is helping keep at bay is Peppermint and Frankincense oils. I am able to function when I apply every 4 hours. Sounds silly but works for me. My physiatrist (rehabilitation doctor) believes in oils, alternative treatments and vitamins to aid in my recovery. I have begun to take the vitamins prescribed again and feel energy from levels of vitamin D he prescribed.

I am literally shedding my old skin and beginning to thrive and feel comfortable in my new skin. Sometimes it is not too bad being a snake!


Detour – Under Construction

I have always been a person who didn’t need a lot of sleep, but when I did sleep, I dreamt vividly and frequently.  As a kid, I slept walked and talked.  I don’t sleep walk anymore, but I talk, thrash, and sit up during my dreams. Chris has supposedly had conversations with me as I was sitting up. Much of my creative inspiration has come from my dreams. Being an avid dreamer, awake and in a state of sleep, can be a double-edged sword.  When in stressful situations, I work a double shift.  I remember, as a Forest Officer, when investigating a big field issue, I dreamt and talked out loud about it all night long  for weeks.  I would wake up feeling tired and stressed…the never ending work day. But all other times, it was like having my own movie theatre in my head – very enjoyable and I wake up inspired, refreshed and ready to take on the world.

I awoke from surgery seeing one of the pictures I took at a recent trip to Dinosaur Provincial Park – dark blue sky, with white fluffy clouds on the badland formations looking for dinosaur bones. The was the last long still image I have had.  After surgery when I slept I felt some crazy things.  At first my brain was in over drive and I only saw lines like in a sketchbook movie.  No real stick figure images, but just lines moving at rapid pace making it seem like it was a movie.  I then didn’t see a thing, just felt like I was a swirly screensaver, spiralling downward endlessly.  I then felt like I was in an out of control elevator dropping non-stop.  Each time, I would feel these, I would then just pass out in some deep sleep.  I would see flashes  & flickers.  About five days after surgery I would see flashes of still images – dream fragments. Then those disappeared as well & I am back to just feeling the swirly motion or flashes of light.

Scientists are still trying to get a grasp on why we actually sleep and dream.  After my brain surgery, I think I lean towards the Restorative and Brain plasticity Theories  where sleep is needed to help the fix body  from the day’s wear and tear.  Dreams are also thought of as a way of processing of what went on in the day where  you are keeping the good stuff, and throwing out all the clutter so you are good to go for the next day.

My brain was hurt with the hydrocephalus and invaded with a small tube via endoscopic surgery.  I feel very certain, my brain is trying to heal itself as much as it can.  I think the dreaming function of the brain has been put on hold as there are much unknown higher priorities that need to be taken care of first. I mean there are approximately 1000 trillion connections in the brain and some need to take time to get fixed or re-routed.  Although I want to Dream On with my own personal collection of movies; I have to remember  not to get frustrated that my dream highway is under construction and I have been re-routed down some unknown obscure road.