Howdy Hydrocephalus

Understanding my unique gyroscope


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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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Neuro plasticity

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Found this article & thought I would share neuroplasicity
I wish there were more treatments here that were covered by health care. Need to ask my brain doc Neuroplasticity, also known as brain plasticity, is an umbrella term that encompasses both synaptic plasticity and non-synaptic plasticity—it refers to changes in neural pathways and synapses due to changes in behavior, environment, neural processes, thinking, emotions, as well as changes resulting from bodily injury.
Neuroplasticity – Wikipedia, the free encyclopedia

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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!


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Life on the Unit

The fish tank

The fish tank

I completed a 3.5 hour neurospsych test in a quiet uniterrupted environment on Monday. It took me 24 hours to recover physically and mentally. I can not even begin to explain how exhausted I was. To put it simply it felt like I had run a marathon (not all desk work) and a truck ran me over! The results were to be expected that I do have some difficulties with short term memory, visual processing, thinking processing speed etc….but overall within the normal range for testing. The kicker was that it was stated that testing was done in a quiet environment so that the results so that they do no reflect real world situations and to expect that all hell may fall apart when put back into real world scenarios. That with continued time and therapy, I should be able to learn strategies to adapt. (oh goody! can’t wait) The psych indicated that when I plan to start my masters we may want to test again to determine what accomodations may need to be in place for me prior to starting. Mmmmm not to sure if I want to drop $25,000 when I am not bringing in any income. I was planning on working and completing my masters at the same time to offset cost. (I am not going to think about this at the moment – it hurts my head! I will focus on getting better first)

So what happens when you are guest on the unit. Predictable routine happens. We wake up, get ready, have our medicine and eat breakfast. We get to choose our meals for the next day at breakfast and the fun part is that we may not get or remember what we picked so meals each day can be a surprise. We are all scheduled in to a vareity of groups and therapies with intermingled breaks.

Every day I am scheduled to go to the gym where we are working on getting my right side strength back. I have physio where they work on my right side coordination and getting the head to body part connection quicker. In Speech, I am working on techniques to help with my stutter which includes many steps and coordination. Occupational therapy works on my audio attention, and my being able to take in all the wonderful changing environments and stimulation. It helps with problem solving and gosh knows what else. I also have recreation where I sometimes work on my sorting my photography drive, make cards and some other weird art piece. I also participate in the physical recreation in the gym where if I am concentrating on something my visual inattention is noticeable. I jumped like crazy when I didn’t see a basket ball bounce right near me.

Each session is 30 minutes long. I know it doesn’t sound like much and I even looked at like – Whaaaat are you kidding me, but after 30 minutes of physical or mental I get wiped and have to lie down for a rest and usually get a headache. Yup a rest. I never used to have to do that! I still can not get over the fact that my body and mind still act like they are possessed by some dumb/slow lazy person which was totally opposite of how I acted before. I miss being super quick at talking, thinking, decision making, switching tasks, multitasking, living life etc…. I like how I could only put in minimal effort get my school done with good grades and work done to spend more time playing or creating and being with family. Now it seems that I need to put in great effort to understand what I am reading, coordinating, putting together my thoughts and doing things. I know that I must be patient and that I am only four months into recovery and will see improvement upwards of two years, but I guess I am still missing the old me. I have read that people with a brain injury do go through a grieving process – denial, sadness, anger, acceptance (don’t know the order). I know I am at the acceptance and moving forward phase and it is okay to miss the old me. I am learning news skills for me to adapt and to move forward. Just wish I could learn them quicker so I could gain back some control so I can begin to plot a new direction.

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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.


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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!