Howdy Hydrocephalus

Understanding my unique gyroscope


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Missing Me

For the last month and a half a series of events accumulated for me creating the ultimate pity party for missing my old self. This reached it’s peak and dissolved mostly when my son re-broke his right leg again. He broke it the first time in October during hockey assessments and the second time at the last game of year in a tournament last week.

So what led up to me missing my old self? Me missing the old me has never gone away. I was so much more than what I am now. I was an adventurer, I had endless energy, like to keep busy all the time from morning until night. I was raised to be a strong independent person. I was not afraid to use my brain, my voice, reason and research to get my point across at work and in life. I had two little kids that never knew that they accompanied when I had field work. They thought we were always out for a drive. My kids were to young to remember the old me. They only see me as the “lazy mom” who sleeps all the time. Usually I laugh it off, but lately, it has been hard to laugh off my quirky new me.

I am a lot different now. I am Skinnier than I was before by about 15lbs but I am 1000% times weaker and 1000% fatigued where when walking up stairs, I lose my breath. I am no longer spontaneous, I have to plan and allot my day so that I can make it with the least amount of napping as possible. I have to plan my day to minimize my visual, auditory stimulation, so I don’t get overwhelmed. Sometimes that requires me to do odd things, like move to where less peaople are, leave or just not go at all. I easily forget what my intent was for shopping, even with a list. Often I will forget the same item on the list five or six grocery trips in a row. I just misread the word or don’t the the word. I try to understand group conversations but honestly, that takes a lot of work and usually am behind in process in the conversation so that when I talk, I am behind. My anxiety goes off the charts in the new situations with people. My mind goes blank so I don’t remember what I am going to say and my stutter comes out.

So what led of to not being patient about the new me and missing the old me was seeing people from my past and then socializing with new people.
I had three bosses. Two I was very close to and both their wives were just awesome. I say 2nd in command’s wife at a local store. We were chatting about paint chips and colours when she said “Don’t you recognize me?” Awkward is all that I felt. We chatted for a bit and I left.

Then two weeks later, I saw the company founder in Canadian Tire, we were both looking at the seed growing trays. He gave me a big hug and we chatted. He wanted to know about my health but at the same time, you could see the sorrow in his eyes and he really didn’t want to talk about my health. Then I got his wife’s name wrong and we parted ways. When we were talking, my vision started to get all wavy like aura’s for a migraine. I made it out to the car and rested for a bit, because I thought I was going to pass out. After this I felt physically horrible for a few more hours.

I then got my recent neuropsych report in the mail. That was no picnic to read. It is hard to read that I have neurocognitive impairment typical of Hydrocephalus Squellea. I started to feel so crappy that I began to visual journal to help boost my spirits.

A week ago, I was thrust into my first ever hockey parent away tournament. The social anxiety got a hold of me more than a couple times and there were awkward moments, bouts of word finding, stuttering and complete mouth hanging open zone outs, but I survived. I had a fun time…socialized, drank some ciders and beer and got to know some great people. But so very very tiring. I didn’t get my rest in and my functioning was near empty when my son broke his leg. I spent so much time recovering that the Easter Bunny almost made a big mistake. I had thought I had bought Easter Candy so when hubby and I went out, I said we didn’t need much. So when I checked the bag of stuff I had originally bought there was only two Easter Bunnies. I raced out the the store last night around 7:30pm to scour the empty shelves and peruse the Easter Aisle in hopes to get more Candy for the two kidlets and our two international students. CRAP….today I remember that I never did buy much because we were to be in Vancouver for Easter. So problem adverted right.?! I stocked up on candy…now we have enough to little eggs and jelly beans to last until summer. I fall asleep, D crawls in bed with me while Wy and hubby are downstairs sleeping. At 1:30 I jump out of bed….crap…the Easter stuff needs to be put together and hidden. So for an hour…I am trying to hid candy with a restless broken leg kid on the living room couch who is sitting up in his sleep, calling out and I am ducking behind chairs, doors and the kitchen Island. All I can say is that morning came too quick and I have had a lazy lazy day of reading, sleeping and eating chocolate.

We did have turkey for dinner, but instead of a full turkey, I got one of those box turkey breast rolls. Kept it easy and it made a world of difference. So the events of last week kicked me out of my own personal pity party and I am glad. I am sure they will pop up again.

It is just so hard because people you used to know…know you for when you were so much more. Now I just don’t feel whole. I am grasping,,,cringing when I respond that “I am a stay at home mom”…my bias and self-loathing running in my head. It is not like it is really popular to say “Hey I am one of those lazy people on CPP disability who should just get out and get a job” It is currently a rough economic climate so when people spew their frustrations, I am unknown to them usually a part of the lazy crowd. I just keep quiet, but you know it still stings. Doesn’t matter even as an adult, when people are mean spirited or cruel it still hurts. It is hard when the people around you also get tired of “supporting or caregiving” for you. They don’t like the added responsibility of picking up slack. I just can’t get anything done. I forget I was working on organizing my passwords, I forget I was working on a business plan, I forget to cook…I just most likely get distracted by other stuff and short term memory loses it. I forget what to do for my day unless I write it down the night before. A week later, I will not remember what I did.

So I am glad for the helping distraction. I have learned this week I still really like my art and creative making because I missed it so much. I also have enjoyed helping my son quite a bit. It feels good to be wanted and useful. I guess I will continue to take the good with the bad with a smile on my face and eventually, all will fall into place. When you fight for stuff and keep getting walls, then maybe that is not an intended path so I must continue to remind myself to be open and allow grow and move forward on it’s own. And yes to my lack of patience…it will take time. GRRRRRRRRRR!


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Neurosurgeon says ETV a success

Last week I went and saw my neurosurgeon. I had a scan done in January of my brain. He confirmed that the ETV hole has good CSF flow and everything looked awesome. He then gave me an MMSE or mini-mental state exam.

He has administered the test three times to me. The first time I scored 24, second 6 months later 25 and 26 just last week. Basically this test is usually used to figure out cognitive impairment overtime with patients with dementia. The test does not incorporate your education level so that has to be adjusted when scoring. My neurosurgeon indicated that prior to surgery I showed signs of mild cognitive impairment…no shit Sherlock. I forgot how to read a map, where the hospital was located, how to do my job…that was scary! It was so frightening to see things slip away, but by the time my surgery, I so impaired that I showed no rational fear about surgery or risks. Since surgery I have thankfully shown progress and now considered not to have cognitive impairment in his eyes or so he lets on!
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The test was easier for me on some parts and challenging on others. The second time I took this test, I had trouble counting back by sevens from 100 that the doc asked if I was trying and I got all teary-eyed. This time I did better and I was impressed with myself. I also 3 out of 5 objects without prompt at end of test. With prompt, I am got one more item. I had trouble when drawing my clock. I couldn’t remember which way the hands went. I was supposed to do 1610 but think if came out like 1320 instead. I even admitted that I couldn’t remember where the hands where to go.

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The funny thing is that people often say that my neurogenic stutter is gone. True the brain is healing and the speech therapist tips, tricks and strategies have helped me considerably but the darn stutter reared it’s ugly head showed up again during the counting backwards part of the test. I think the stutter shows itself, not because I am nervous, or anxious but when my brain is working hard trying to get those connections firing again. I have had so many tests like the MMSE and more intense neuro psych testing, there is no reason to be nervous. I get amazed where I have improved now rather than mouthing hanging wide open…wondering what happened to me.

I admit that I have made large strides and that it is somewhat surreal for me still when I have more than one good day in a row. It is now up to two or three good days in a row (with proper resting and time management) and then I have a bad day and go “oh yeah…this shit again” This TBI/ABI recovery is like a clinger….just won’t let go no matter how hard you try to flick it.

This journey amazes and frustrates me every day. I am so grateful to advocate on behalf of myself more. I understand, interact and communicate more easily. The world that I live in is no longer like being continually drunk or on a spinning amusement park ride. I have the attention span to watch most of a movie or tv show. My memory has improved I have also learned strategies to help with organization, planning and memory. I still need to use those techniques on a daily to basis because if I let them slide, I will become anxious, freeze and not get anything done because I can’t figure out priorities or tasks to do on the fly. I become obsessed over ideas,things and projects and forget about all the other things that I need to do in my routine. I will forget the most basic things but will remember the oddest most inconsequential shit. Chris always shakes his head at me like I am a savant…then we laugh. These are just executive functions of the brain. They will also get better with time too! That’s it time…that seems to go painfully slow with my recovery but yet so fast with other parts of my life.


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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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Bi-confidence

I am at home with my youngest who has a spreading rash on neck and face so I can not go to todays BIRS meeting. I was looking forward to it. Last weeks meeting was good. Apparently i have great self-confidence and self-worth in my personal life but when it comes to my art (not including photography) and trying to figure out a new professional side, I am lacking self-confidence.

But who wouldn’t lack self-confidence when bascially all the you knew kinda went swiss cheesy and into the depths of the deep dark brain. Did you know that most people see their career persona as their number one person…or should i say those type A people – like the old me see themselves or self-worth via professional side only.

So what is my self-worth and being:
a good parent
partner
friend
happy
pet owner
artist
driver
cook
swimmer/water exerciser
writer
volunteer
advocate
and many more that I can’t currently think of.

I am working three times a week at the Brain Injury Releaning Services to get my brain back a bit more so I can either go back to work or go and successfully do my Masters. I accept that I am not ready at the moment. So letting go of a timeline for completion and being “back” into what some say “productive” place in society is okay. I just can’t stand the stigma of where I am at. “Society leech” “tax payers drain” but it is what it is. So really I do not need a professional side of self-worth. I should just throw that out the window and say screw it. Why do I need two or more self-worth pigeon holes. Maybe I will just have one. If people can’t accept the one, they they should filter out of my life.

By allowing myself to do less, expect less and just be, I am having more energy. Less stress = healthier me.

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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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The Memory Fairy

Having my memory shredded to Swiss cheese, I can relate. My short term is not so hot but getting better. My long term better. There are still grey fuzzy bits for 3 years pre and two years post surgery. I have awesome enlightened moments when things come back and frustrating pits where I used to know but now I draw a blank.


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Big Steps

The other day I remembered that I should write in my blog. For some reason my reminders have not been showing up. I was inspired and my fingers flew freely, faster than if I concentrated and had to speak. I was super happy with what I written and then of course…I hit the wrong button and all that disappeared in front of me. I was not upset, I know that whatever came through my fingers was gone and I would write something else.

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I finished my testing at BIRS (Brain Injury Re-learning Service) and have been working on improving my squirrelly lack of attention. I have two one hour sessions a week. Most the time I don’t even make it an hour because I am tired and my brain is fried. We are using technqiues from the 80’s…i am assuming their philosophy is if “it ain’t broke don’t fix it”.

I am not giving up on the brain schooling here in the Hat, but I am a little skeptical as I think there are other ways. I still do not like the fact that there is no support group for me or my family. I dislike that they do not have other activities such as social art, fitness etc that other brain agencies have. I looked online and the Powell River society has all that and it is a very small community. I wish they would get with the program and get us brain injured people together rather than isolating us. It is bad enough that i would rather stay in my house all the time unless i have my appointments that wouldn’t provide basic stuff such as a support group. What am I to do go on Twitter or Facebook and say “Med hat brain injured person looking for friends in similar boat”??!!! Okay I actually did that on twitter and was given two names of people and I was in contact with one lady but of course I lost all her information because I have a brain injury and I am beyond disorganized and chaotic.

On another note, chronic pain is a pain in the butt. I never realized how bad my 24/7 headache pain was until it went away. About three weeks after my shots I woke up with energy and no head pain. It was like I could think (manic thinking because I “now could do everything at once”) and I felt that my head was not a lead balloon and weighed 50lbs lighter, I was almost human; more than human a super hero; nothing could stop me now So the Botox was working like a hot damn. How did I know that my new operating system was working at a low pain level was that an hour later I was knocked flat by a migraine combo ice pick headache – wowsers talk about a shock to my new system. I had adapted to my constant pain by breathing, distraction and limited life activites.

I never gave up to finding a solution to my pain. Now don’t get me wrong, I am still not fully out of pain. I frequent headaches, but they are doable. My right side pain is still there too, but the meds are sort of working. I am hoping to change in July to something else that will work with pain, fatigue and other side effects that I do not like. I just wish other people with chronic pain would keep fighting for solutions rather than giving up and making do. Making do just sucks!

I am so amazed at my recovery since September. The speech twice a week; volunteering with kindergarten reading group 30 minutes once a week; volunteering at school when I could with field trips etc… has paid off. I was able to use my speech techniques frequently that I have muscle memoried them in to my body again so my stutter doesn’t show its head until I am very tired or there is way too much stimulation around me. I am able to communicate better. Still don’t really know what to say to people beyond the basic conversation unless around really close friends. I am friendly to people; but still learning the cues to know when to finish a conversation etc…

I am learning to accept that I need lists to make things happen. here is an old list from October 2012. This is now in my crainum and the muscle memory recovery process is almost there. I still have to go through it my head at times. However, I may need the checklist again in September until a new routine has been established again.

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Heres to lesser pain days routine filled days.