Howdy Hydrocephalus

Understanding my unique gyroscope


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Warning Evil Villain Neurological Strikes Again!

images (6)I was all prepared to wait another week then give you a great update on my personal chaos but then something important came up and I am utilizing my high dis-tractability to write about this or else I will then overthink about it and it will consume me all day until I get it out.  So here goes…this is what has been on my mind and in my heart creating me to grief since yesterday.

My youngest son wanted to play ice hockey this year. It is his first time and we had player evaluations yesterday. My oldest son’s coach from last year son was in the same evaluation group. This made my youngest son happy to sort of know a couple boys on the ice. We were looking forward to the usual casual catching up about summers etc….

However, when the Mr. S and his family walked in, I noticed the gait, constricted body movement,  grimace of pain and slight facial difference. I said “it looks like you are in pain…did you hurt yourself?” Mr. S responded “I lost a battle with a mosquito.”

All I could think was Whaaaattttttt….the……F. This is a load of crap. He is so young to be hit so bad. He is a good guy…his family is good people. Why can’t this shit happen to bad people like the asshole who stole a truck last week, caused two different high speed accidents in two different intersections and takes an innocent 18 year old’s life; then decides he wants to try to take the Police Officer’s gun in the hospital. Those are the assholes that deserve this shit not a person who works, volunteers his time and is decent. I always shake my head as to why this happens.

So apparently Mr. S is one of three people who contracted West Nile this year in Alberta. And of the three “fortunate” people who were bit by the special mosquitoes, he of course he drew the lucky wild card and was hit extremely hard with both severe physical and neurological effects.  Everyone is hopeful that the effects are temporary and not long lasting or permanent. I know I am hoping there is not long term effects. But when anything affects the central nervous system you never know what will happen. I know neurological re-wiring does happen and continues to happen with me but it is a very slow and I admit frustrating process.

images (22)I think it hits too close to home and I know the enormous amount of grief, guilt and loss person that is happening to Mr. S. I still don’t understand the family perspective entirely. But I can see the pain, sadness, uncertainty, trying to hold it together without breaking down and trying to be positive in Mrs. S eyes. I can see that the kids will grieve, be angry at times and frustrated, but the love will always be there. I see the fear, uncertainty and the ominous overbearing unknowing that lay ahead. I see the hope for continued recovery.

images (3)I also wonder if they are provided with all the resources the community has. I know we weren’t. We were not giving all the other stuff other than prescriptions, occupational or physical therapy. There is more out there but information seems to always get left behind.

  1. Get into a chronic pain management clinic rather than just Neuro or GP
  2. Occupational therapy runs out…Brain Injury Clinic can help with memory, distraction, daily activities with both an one on one sessions at BIRS and workers who can come into your home.
  3.  Mental Health in Provincial Building has people you can talk to. By yourself, couple, kids and family sessions available. This is a big stressor event and we are never taught how to hand it. Everyone assumes we can “Just Deal”. When you lose your identity quickly depression and anxiety crop up and almost go hand and hand.
  4. Medicine Hat Hospital Recreation programs are amazing and help you explore new or adapted leisure and recreations options. They have great programs such as walking, art, and others but I forget what.
  5. The Healthy Living program that is run in a building near the hospital is a great program. It was a safe place to work on building coordination, strength, and fitness.
  6. The YMCA program has an adapted fitness coordinator
  7. Community Futures Disability Entrepreneurship Program for those who are finding new career directions in life.
  8. MH Adaptive Sport is here in Med Hat with amazing people. It is for people of all abilities not just wheelchairs which I thought.images (8)

That is all I can think of for now but I am sure I have missed some very important groups that I have used and continue to use.

But one of the biggest things that have made a positive impact in my life has and is laughter.  Humour and joking is one way to break the ice with those who are uncomfortable when they see you for first time in a while, as well as with family on a daily basis. Humour and laughter just naturally cycled in being positivity in our lives. From that it spurred gratitude and mindfulness…of course I am continually working on the the mindfulness.  But as a dear friend of mine who is a two time cancer survivor and now officially conquered the big C always says “Any day I am turfside up is a great day” This so true for all of us as we take the crazy journey through life. We all often get wrapped up in the fast pace and stress of getting it all done we never really take a look around to appreciate the simple things.

images (2)I have always hated mosquitoes, black flies, deer flies and horse flies especially when working in a black spruce stand where you are basically a free diner with a neon sign that says open for business…free blood. You have to walk around looking like an alien in a bug suit because Deet is just an appetizer for those hunger little buggers. So I had to look up what West Nile was again because it has been a while and my mind of course is a sieve. So West Nile is a mosquito borne disease that usually doesn’t cause and symptoms or some very mild flu-like symptoms. More information can be found here. But the virus can spread to your Central Nervous System and create long-term havoc. There are aggressive treatments but there are still no stats on recovery rates which really sucks. Prevention is wearing bug spray and screens…limited which is even more suckier. I hate wearing bug spray and screens are only as effective as the amount of doors opening and closing or how many cat claw holes you have. I know we can not live in a bubble but really it just not enough.

Well thanks for letting me ramble with the keyboard. Hope everyone has a wonderful day! Remember take time to slow down, breath, feel the breeze and sun on your face and cre8te something for you!

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Look’n Good

images (5)I saw my very good friend today and she said that I look tired but very good. I had to agree with her. I am looking but feeling exhausted. I am so dragging, headpressure and pain. Not enough to get me completely out of the game of life but enough that I know it is there. This feeling is like an annoying hangover which would be okay if I had earned it from the night before.  Nope just get the feeling. Lucky me.

Last Monday, I had my neuropsych assessment. This is the second one I have had. The first was when I was inpatient rehab when in Unit 58.  It started at 9am and went until 12:15ish. I was exausted and felt sick to my stomach after. It was an interesting series of tests. I had to laugh at the peg test and the grip test. Oh yeah…lacking coordination and strength on the right side…it was quite amusing as I was doing it. I like the block test where I had to do patterns. The attention and memory tests were sucky but I plodded through everything.

downloadI then went to cafeteria to get lunch. It was so busy that I only sat there a few minutes and decided to go check in to sit in waiting room where it is usually quiet since I had an appt. with my Physiatrist for 1:30pm.

I check in; walk down the hallway where the waiting room nook was empty…score!!! I settled in and tried to eat my sandwich but I still felt sick to my stomach so I stopped. I was sitting there with eyes closed, relaxing in the relative quiet of a busy hospital when a person comes down and he is loud. He is another outpatient like myself. However, noise is not an issue for him but being loud, obnoxious were some highlight characters he exibited. Then he said he was there for his anger…while stating that the police are  corrupt and he got his injury from police when trying to arrest him. OMG…I think that I am going to lose it and police might come arrest me becuase he will not shut up; I am tired; feeling like shit and trying to really be polite. I do this for forty minutes. Finally I get up to go to the washroom and a young intern doctor motions to me as I come out that the escape route is to the left. I explained that I need to wait and the look of pity was did not go unnoticed. Then he gets called out…peace & quiet again. I shut my eyes and sleep again.

When it is my turn to go in, we talk about how I am doing. I tell her that there is no way I think I can be a sucessful counsellor, I don’t think I could really listen to people all day. We check go over meds and then do the Botox. Chris was in room with me by then and it is his first time waching the process. I guess when it goes in, the skin all inflates and there is a big bubble. The needles never seem to go quick enough. I even yelled out once or twice. 20151120_094254I even ended up with bruises on my scalp & forhead this time.  So the remainder of last week and still this week has been a little uncomftable.

The Psych called today to give me a rundown on my results. He said that I had improved in all categories but memory went down. He said that if I want to go back to school or re-train, that would be best at visual and hands on. That is good news at least. Options. I don’t think a Masters is in my future anymore, but I have a couple other ideas in the fire right now.

The memory going down is a concern! I have been experiencing other potential hydro issues but have been ignoring them for the last couple months but today I ended up sending email to Dr. to see if we can get a head scan. If there is another issue and I need to get an ETV again, I would rather do it sooner than later.  Below is a list of common symptoms when your hydrocephalus is acting up or things are not flowing right:

Older children and adults may experience different symptoms because their skulls cannot expand to accommodate the buildup of CSF. Symptoms may include headache followed by vomiting, nausea, blurred or double vision, sun setting of the eyes, problems with balance, poor coordination, gait disturbance, urinary incontinence, slowing or loss of developmental progress, lethargy, drowsiness, irritability, or other changes in personality or cognition including memory loss. taken from.Hydrocephalus Fact Sheet


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Almighty sleeping pill power

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Since I have been taking a sleeping pill lately – I now not the healthiest thing in the world, but ya gotta do what ya gotta do until I improve my sleep cycle routine etc… I have been surfing on my Ipad (with tinted glasses on to avoild the blue screen of sleep death) and finding all sorts of articles. I usually find them the next morning and think what the heck was I searching for. But this article 7 tricks to improve your memory was a great re-read. I can not remember anything that I do in those moments from taking meds to being knocked out.

When I grabbed the Ipad moments ago to surf the internet, I found out that last night I was looking at articles for memory, different alternatiive health methods, art journalling, brainline.org was open with four different articles. I then looked at what apps I had open and I started doing luminosity and I guess i didn’t finish. YP shopwise (didn’t even know I had that app or what that app is) and Facebook (no one look at what I posted in case it was baaaad). I found my ipad on the side of the bed this morning and have no idea if it just slid off the bed or i placed it there thinking I had put it on the bedside bookshelf.

So I take this pill under my tongue and think that it really doesn’t work but it fact it does and maybe a little too well. This tiny little pill packs an immense type of power. I am still using my essential oils at night. But I need this crutch for a bit. I don’t have time right not to allow myself to go through an insomnia cycle naturally.

Our last Brain injury support group was about sleep, nutrition and wellness. It is so true to that things come into your life at the right time. It was good to re-learn and listen to everything. I just wish i had some answers to why my brain does not like sleep when it really badly needs it. It seems that my brain wants to have one of those lingering hanger on unhealthy relationships with insomnia.

My SJS flare is a bad one (my hair is falling out in handfuls) and I can’t afford to let me immune system get weaker. We are packing to move and Christmas is around the corner. So I will allow myself some slack and give my brain some much need recovery time and rest


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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.