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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Getting Kids Outta the House

Found unpublished from around October 2012

I received a comment on facebook from a dear friend where she wrote

We take a lot for granted. I recall when we were told to write instructions for a “simple task” and realized there were so many things going on….

It is true.  Here is my list


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All I want for christmas

In the dining lounge this morning, there is the television blaring with news of more funerals for the kids and adults who were shot down last week. No one here really has paid attention to what has happened. There have been a few discussions about gun control but most, I think, like myself know that it has happened, but are currently being greedy and focussing on ourselves and on getting better.

Two of my table mates who both have had strokes begin to talk about what they want for christmas from Santa. It is funny because the one person begins by saying “All I want for christmas is my left arm again” The person next to him says the same thing. Both have seen improvement in the arms in a week so they are hoping by Christmas they will have their arms back. This is the place where you can see amazing improvement in people in short amounts of time. It blows my mind! I am in awe of all the people who are re-learning way more than what I have to re-learn. The people in here are the true warriors. They have so many things to re-learn that they use to do unconsciously, but now have to make conscious efforts until they each step becomes unconscious again.

The breakfast conversation made my morning because I was still wiped from three hours of neuro psychological testing yesterday. I slept after the test, got up for dinner, then watched a bit of a movie then slept all night. Today both my eyes are giving me grief – fuzzy vision (not just my right eye); I feel still tired and have a monster of a headache. Moral of the story is that when I think too hard or do too much physical I get slammed preety bad.

At least my CT scan from yesterday showed my ventricles have shrunk back down a bit which is good! That I am just experiencing a bit of chronic pain from my head. I hate the word chronic pain; people think you are a faker when that word is used.

It is awesome that I am learning about what my brain has disconnected for my speech. Apparently, my muscles in my lips need to be re-taught how to work and release. So words that begin with W, F, V, B etc. I have been hitting too hard and my lips get tense so I stutter or hit the letter too hard. I have been learning how to breath the speak and now I am learning how to soften the words. It is amazing to see and hear it work. I know that Wy noticed the way I was saying his name, but not too many other people. It probably always sound like I was angry at him, but now I am working on saying Wy’s name properly! I am learning new stuff everyday. It is just being able to remember and coorinate it all so the techniques will work.

So what do I want for Christmas…is that everyone stay safe and healthy so they do not have to visit this place too!


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Roller Coaster Ride

Well it has been almost three weeks of me having a bag packed with my clothes & not driving.  Chris phoned the Brain Injury clinic and left a message for the Doc.  He then spoke with the Unit 58 where they told him that “Yes I am always number 1 on the list, but because I have been discharged that I always get bumped because of someone inhouse.  That the person in house is that is moved to the open bed on the unit doesn’t always need the servcices of the unit but just needs a bed.”  Basically – Chris was given the honest truth that there is no hope in hell of getting a bed on  the unit with a possibility but no guarantee of getting a bed at during Christmas.  Chris was pissed with that because why go when all regular staff is on holidays.  I was livid.  My reaction was over the top!  I swore like crazy because I felt that I was lied to, given promises and put on hold for no reason.  Not to worry tho because we had an appointment with a local agency that afternoon.

We go to that appointment and I am blown away about how un professional, uncaring and lack of resouces it has.  I am sure it is great for people who need the basic but my opinion is that there is little they offer for people like me (labelled high functioning).  I asked about what they offer – stuff for memory and distraction & physical.  The rest nothing.  Asked about driving assessment.  She said that if I didn’t have a letter stating not to drive I could & that if we want to pay $300 for a driving assessment we could.  I asked about career stuff.  I told her that I put my Masters degree on hold I told her I am at a loss.  I was on the path of teaching more than one course at the college, did environmental stuff but at this point I have the shittiest short term memory, can’t understand more than one person talking at a time and if I get stressed then my words come out all funny.  I know that I can drive fine, but for short distances and at night I shouldn’t drive.  She told me that I could go to the community employment services for help.  I told her that I went there when I moved here five years ago and that they told me I was overqualified for the services they provide.  I asked if they had anytthing else.  No go to CES.  I am on my last two weeks of EI disability.  I don’t know what I can do for work – I am at a loss.  Yes – perfect job would be right now – no flickering lights, no big windows, no more than 45 minutes computer at one time, no more than one person talking at once,  not too many people, or quiet people, clear directions and time lines, someone to help with the process etc…Yes I know I look “normal” but my brain is still a disfunctional.  She told me I could go get help from welfare.  WTF!  Man talk about robot responses.  Are there no other resources.  Did ya hear a word I said.  Basically they offer some stuff, but the rest I would have to pay for myself.  So this agency offers me three one hour sessions per week for….time.  WTF that’s it – I am feeling like this place is so bottom of the barrel.  Plus they will not take the test that the doc has already done.  They need to re-test me again.  Now I know it…this agency is a justifier for money.

I walked out of there mystified.  Chris shook his head & thought they were unprofessional.  There was some other chick in the room with arms and legs crossed – never introduced – why the hell she was there is a mystery to me.

So we go home.  I am & was an emotional wreck.  I have been one to always be quick to anger but super quick to get over it.  I couldn’t let go.  I had thoughts of what the hell am I to do.  Do I need to fall and wack my head or take a bottle of pills to be put in the hospital.  – Yes I know they were not rational thoughts.  I was not suicidal but I was going over what I would need to do to get admitted to hospital.  Then I was going over in my head  my lost identity when I first had kids – yup my old boss was right the Mommy train puts a halt to any career movement.  And then have lost it again recently when I was just starting to get off the mommy train and see some potential for good career progress.  I was thinking that realistically with no income coming in, I was worth more than alive.  Moneywise it is true.  Being not well is expensive.  We have spent a lot of money with very little return.   No one get your panties in a knot – I am not planning on harming myself in any way.  These are just some of the not so rational thoughts that I had to work through last night.

Needless to say I didn’t sleep well.  I couldn’t let anything go!  I get up this morning and unpack the bag and get the kids ready for school.  I drive the kids to school and on the way home I get a phone call from the Doc saying that they have a bed for me for today.  I told her we will take it, but will not get there until closer to 4 or 5.  I said that I had a meeting yesterday with the local agency and that they do not offer much.  She agreed and I think that is why she may have pushed for a bed. I phone chris and leave lots of messages.  So we will pick up D from preschool at noon and pull Wy from class the same time and hit the road.  Chris says I should have unpacked my bag two weeks ago.  I have no idea what to expect.  I know my expectations are high.  I want to get fixed!  I know that it may never happen and will have to grieve my old self, and learn what my new self has to offer.  I just hope that I can be provided some positive direction.

I am drained, and tired and stunned!  All I can say is get me off this roller coaster – I am not liking the highs and lows.

 


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Limbo

I just love hanging out in limbo especially since I am not supposed to drive.  I have had to rely on wonderful friends, Sara, for getting Wy to school and TKD.  I did drive once to get Wy to a b-day party and boom instant head pain.  I think it is a disconnect between brain and visual reception. We went out for dinner.  I could hear the fajitas sizzling from across the restaurant.  Then there was the grating noise of sweeping of a broken glass at the bar.  It was crazy.  I was wiped after that and had the worst case of insomnia that night.

It has been a hard week. The medication makes me feel really tired and out of it in the morning, but was still waking at night. Following directions, upped meds last night and I did sleep with only fleeting periods of waking but still felt like a truck hit me in the morning.

I have also struggled with feeling down and completely non-motivated.  I think not having the freedom of just getting in the car and going really affected me.  I know that I could take the bus…yup I could…but haven’t talked myself into doing it yet.  It would take two buses to get the boys to school.  Mmmm…still need to work myself up for that one! D & I did go out for walks, even on the cold winter afternoons, but we mostly just hung out and did nothing. I think I played army and baked cookies.

I haven’t been on the computer very much.  Today has been the most and I can feel it already.  Need to get family christmas pics edited, christmas newsletter and some long overdue blog posts done.

I am told that a bed will open up this week.  I really hope a bed opens up quickly so I get everything started.  I will then have a better idea of what I can do or not do at the moment, the reasons for getting tired and maybe some idea what all my newfound quirks are.  I need to have all the assessments to figure out if I can go back to my old job or re-structure a new career path. Having little strategies is what pisses me off the most.  Yes I know I can hang out and be a hermit but really is that productive.  Some days I feel yes that is and others not so much. Here’s hoping getting in this week so I don’t have to be in the hospital for Christamas.


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Committed to being Committed

I had my appointment at the Brain Injury Clinic at Foothills hospital yesterday.  It was quite the experience.  I met an amazing social working and doctor.  I was asked lots of questions and had to do some tests.  I was told to come with a list of the weird things that have been happening to me.

They asked about how I was before I began to feel bad – Healthy & fit – no medications.  How I felt before surgery and how I felt after surgery.  This appointment was long.   I felt comfortable to go over what I have been experiencing:

  • Head hurts if I drive too much (which isn’t anywhere outside of town compared to my 600km days)
  • Head hurts if flickering indoor lights or sunshine
  • Head hurts if I am thinking too hard (I know sounds silly but so true)
  • Head hurts if I am on computer too long or watch certain television shows (I am my own worst enemy with the computer)
  • I have issues with noise
  • I have issues with reading and understanding directions/technical
  • I am a little slow on the uptake with understanding and reading
  • I can be super tired and go to sleep easily  to wake up suddenly for one to four hours every night since surgery
  • I have itchy skin
  • Of course the swiss cheese like memory stuff that is very erratic and scattered
  • and on bad days I still get a tingle numb face patch around my right eye and cheek

Phew…that was a long and sounds like a somewhat whiny sounding list.  I was expected to be judged and told I was crazy because I look physically the same as before (minus the muscles plus the added pudge from lack of activity), but instead was told that was in the normal range to have these symptoms for having what the Doc calls a “major brain surgery”…mmmm…I am confused, I thought it was a relatively minor procedure.  I still think it was considering what I saw on the acute neuro ward.

After the interview stage the Doctor wanted to do a neurological assessment.  I knew a Mocha was coming and I felt confident I would do pretty good.  Okay I did pretty good on the naming the animals, knowing where I was,  naming things that begin with an F…started off slow but dredged up some forestry terms and recovered.  I did great on a couple others then it went downhill quickly with subtracting from 100 and recalling the damn five words I was to remember.  Okay I sucked that up as I am still recovering, but really thought I would do better.

Next came the physical stuff -easy peasy right!  Or so I thought.  I really didn’t have a clue that my balance was wonky until I had to stand with feet together and eyes closed.  Then it was really embarrassing to look at the doctor as she had to explain more than once a simple task I was to do.  I mean this stuff should come easily or so it used to.

So after a very humbling experience and feeling a lot stupid, because I was never like this.  I am faced with the unknown of where my future may be.

The Doc gave Chris and I some options to help me on the fastrack back to where I was.   I agreed to take a little blue pill that when in higher doses is an anti-depressant but in smaller doses the side effect helps with headaches and helps you sleep.  We also committed to have me go to Unit 58 for two weeks of inpatient rehabilitation.  All I know is that some time next week, the unit will call with a check in time for my next new adventure.

The weird thing is I am more anxious about this than the ETV surgery.  I knew that the surgery would have a great outcome, but no one can tell me what the rehab will do.  But I will never say no to  a new challenge. Plus they said to pack my bag like I was going on vacation…yes…that’s what I will keep telling myself…a two week vacation.