Howdy Hydrocephalus

Understanding my unique gyroscope


Stop & Go

having funIt has been quite the journey since February 2013. All I can say is that my CSF flow is good. I do not have a tumor and I didn’t have a stroke. The low blood pressure & decline in cognitive functioning was most likely from yet another bad medicine combo. The going blind in right eye and losing my left arm can only be chalked up to what the docs call “brain incident”. All they can tell me is that something happened around my surgery site but no one can give me an answer because they don’t know. I can guess and say that maybe the hole in the bottom of my third ventricle got blocked for a small time again and then resolved itself when the pressure got greater – but who knows.

It took me a long time until mid-May to recover from this little “brain incident” I had no energy and being fatigued was an understatement; had little strength and to date I feel that my cognitive skills have declined. It was really scary and I couldn’t understand why the decline. It took everything for me to be able to just get dinner on the table get laundry done (not folded or put away). I tried to also look after the boys; I was there in the house all the time but mostly in bed. The boys kept themselves snacked up with juice boxes, granola bars and dry cereal. They also kept themselves occupied with my phone and tablet or television. The boys call me a “star napper”. I couldn’t really nap because when I closed my eyes all I see was flicker and my eyelids or eyes felt like they were moving uncontrollably. I would eventually pass out but that would only be for a bit. I mostly just lay there with my eyes closed. Yup I know that there will be critics out there horrified that I let my kids “pseudo” fend for themselves but I was doing the best that I could at the time. My parents came to help out and that was a great thing because they kids were kept occupied.

I stopped almost all computer stuff except checking Facebook or twitter. I barely wrote or took photos. My headaches and head pressure were out of control. I was feeling sick to my stomach all the time and when I looked through papers or computer pain through my right eye to head was harsh.

Mostly the last few months have been a blur. I have a hard time remembering what it was like. I have been to and from Calgary many times. I have had MRIs & CT scans. I almost had a lumber puncture thing that last a few days. That still may be in the works but who knows. I have been to the headache neurologist and we have re-worked medicine and have tirated the dose really slowly and I seem to be doing better.

I finally had my hair cut since last August. The area around my surgery site is sensitive and my hair was falling out like crazy. I have had issues with being cold all the time or getting cold easy and staying cold. So much that my feet go purple and my hands red.

My head pressure is still there and the pain is getting better. I had a telephone appointment with my Physiatrist and she was great. She explained that the surgery was a big deal to the head and the brain is like a muscle. That you have to take things slowly. Slowly is a new word for me that I have been trying to learn. I am a little “slow” at picking it up. It is not okay to go for a long walk with the new dog (Yoshi) but only to go to alley and back. After Doctor orders, I am retrying to be slow.Only little bits of computer a day because the screen bugs me badly and tires me out really quickly. This has taken me four days to write. However, I can not do everything slowly. I still do too much and pay for it. .Wallking a trail
For example we went camping and I had a great time but it took four days after coming home to feel okay. But I would rather pay for it on the back-end to bike and walk with the kids – to feel like a normal person & mother; to laugh and have fun!

I have also come to the conclusion that selling my current camera system and dismantling my photo studio is a positive thing. I can buy a smaller rangefinder like camera that is lighter and easier to handle. We are getting someone to come in to help clean the house so it frees up some energy from me and takes the responsibility off Chris. We are trying to get rid of stuff and purge so I know where everything is. I think I will need labels to help remember tho! My parents helped to purchase the playset in the yard so the kids can play at home.

I have always said that I like to “take the road less travelled” is so true. Let me have days that make me feel that I am walking on a side slope or my balance is so off I need to hang on to something to put my shoe on or I sleep away the hours during the day to spend the evening up with family is all okay.