Howdy Hydrocephalus

Understanding my unique gyroscope


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Creating My Opportunity

I have had my fair share of people questioning me about my ABI. Those people often only see me for a small amount of time. I expend a great deal of energy to act normal. Okay I know that I am not abnormal, but it takes a large amount of effort to have a conversation with people who I really don’t know especially if Chris is not there to let me know that the person does not want to talk anymore. I have come a long way but the cue reading and may not always be there. Some days I just do not have the energy, patience or gumption to even socialize. I often hole myself up at home and socialize online. 

My fingers type way faster than my trying figure out what I want to say outloud. I have spend the last three months coming up with a great business idea that I feel deep down will work awesome for me. I have applied and been accepted into an Entrepreneurial program for disabled people. I am just waiting to see when I start. I have started putting things on the computer, making my website to the point to where I will need help to finish…long way to go yet; and I have used Airtable to make an amazing spreadsheet to help with Market Analysis. I have the brains…okay I am slower at processing, have attention issues and my science side has been disrupted. This does not affect my overall intelligence. In fact, it has really increased my creative side even more than what it was before all this began. 

Lately I have had some brain function increase (okay I forget what I was going to write, but I was so amazed that some science stuff spewed from my mouth effortlessly like it was locked away and a key was finally found). But then as I improve in some areas, others started to crap out again. My short term memory has been giving me more grief. But oh well…with an ABI you body and brain may function awesome for part of the day and then crap out for the rest. It is that ebb and flow of life long recovery the frustrates others around me. I have to laugh at their frustration because they are only annoyed by little things like stuff I have forgotten. I have to live with it all for my entire life. Do you know how hard it is to maintain that smile, be positive and carry on. To take the continual words of “you must of misunderstood” (often that is the case but not always. Maybe You misunderstood me and I actually know what I am talking about) Or that you can not be productive or worthy…that you are a leach or one of those people wasting our taxpayers money. Or that people only see you for the disability and not see your talents.

I openly speak out about my disability now. I advocate for awareness and inclusion. I write about my struggles so that others who read can gain understanding or support that they are also not alone in this. 

Okay I finally remembered about one part I wanted to share…I recently watched the movie Wreck it Ralph with the kids. I wanted to watch it for two reasons. First, I like animations movies and second it has a great analogy of a brain injury.  The locked secret files (where the evil king hid the games memories that he was not really the leader) in the computer game brain are a great visual of how a brain can be after an ABI or TBI. Where information that has been stored in your brain is all of sudden locked away because the neurotransmitters have lost their connection. This connection may re-wire itself with no help; it may re-wire with lots and lots of rehabilitation or it may never re-wire. It means you may have to re-learn the information again or that you just say screw it I will find a new way to do/think/act…it is apart of the new me and you own it. 

Then the Boys and I watched Finding Dory…okay I only saw about half of it but it was the first time I had seen it. Another great ABI, TBI type of movie. I totally understand and love my boys even more because when the first time the boys saw the movie they kept calling me “Dory” in their little boy loving ways. They are perceptive and accurate and just call it like they see it. They saw me pre-surgery, post surgery in neuro ICU…at home struggling until I could get into in patient Unit 58. They saw all the other residents in Unit 58 in all shapes and capacities. They saw me when I couldn’t drive; when I could drive only to the school and back to now where I can drive to Coleman or Calgary. Next will be my trip with them to Vancouver, BC. It may take me three or so days to get there but we will!

So instead of trying to fit in….I am going to stand out. I am making my own legacy. I am going to make my family proud. I am going to make this business work for me and not just work for a business. This business is not just about money. It is about giving back and to hopefully include people who are often excluded in the workforce. I believe I will be able to help make at least one or two people feel that their lives are meaningful again. Maybe even help more. I am setting my sights high. I am positive that my hard work, persistence and re-learning of who and what I am and what valuable skills that I have to offer over the last five years has cumulated to now where I feel comfortable knowing this is the right move for me. 

I am moving forward with the new me and I really do like her alot.  This is the right time to take the risk, jump in with both feet and just go. I can create a legacy by being stagnant….especially since it is Brain Injury Awareness month and I have been overloaded with the negative news posts and research about how exponential the chances of me acquiring Alzheimer’s are after a severe brain injury. Geeze thanks alot…Hydrocephalus, ABI, Steven Johnson’s Syndrome, Pituitary, Sleep issues, Mental Health issues…hell I am not taking that kick in the pants. I know I have amazing genes on one side of family. I am living as long as my Gran Gran.  So I hope that you can discover and create your own legacy. 


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March is Brain Injury Awareness in The United States

It has been a very active Brain Injury Awareness month. I have read so many wonderful tweets from fellow survivors and bloggers. I was even asked by Lyrysa Smith about Hydrocephalus. She is a journalist, book author and caregiver to her sister’s ABI after carbon monoxide poisoning.  She read my blog and then messaged me some questions. What an amazing person.

It is always meet such positive advocates. People with TBI and ABI need positive advocates. We also need to have more up to date resources in smaller centres.

I hate how I have to explain what my condition is, what an ETV is and now have to explain that my hydrocephalus gets worse when something is affecting my body to ER doctors. I will voice stronger rather than be put off like I am over reacting. I have a reason to be concerned. When my Hydrocephalus symptoms increase…head pain, pressure, more right side fire ants/tingling; I begin to walk funny again. My right side grasping and coordination start to fail…I can accidentally drop or throw items in my right hand. I also have a hard time understanding people especially when on the phone. My cognitive gets worse too. My short term memory is really bad normally and it takes and extreme amount of effort and time to move items from short term to working memory to long term memory even gets worse. My perception begins to change and the world can begin to get all swirly again and off balance again. 

These symptoms are the only symptoms I have to go on if there is issues with my Hydrocephalus. I do not know when I go into the ER if my ETV hole is partially plugged and flow is disrupted or anything other. I am told to go the the ER by all my Doctors in Calgary when I experience these symptoms. But When go to the ER here in Medicine Hat. I am shoved off into the cubicle B of less serious cold, flu & malingerer section and made to wait. (I don’t mind waiting as I know people come in with serious conditions but my can go sideways quickly and being blown off all the time is not cool). By the way the same one where I sat with Stephens Johnson’s Syndrome all blistered, bloodied mouth and peeling skin) as triage didn’t think I was serious when in fact I was being poisoned by my Meds and burning from the inside out. (PPL make mistakes and that nurse made a huge one. I still have rash and skin issues to date). 

I dislike that when you have a life-long condition and that you are made to feel you are wasting the medical system, hospital system, tax payers money when I go into the ER. No my condition never gave me a huge fever and my blood pressure would always read 120/80 (which is high for me but they always ignore that with a polite tight lipped sneer of someone who fully believes they are more qualified to know my body better than me) even before my brain surgery and definitely not after. Only once was my blood pressure at 170 or higher and they stick couldn’t figure out what was going on…infection…partial blockage. No on really knows…most likely me panicking because I couldn’t stand. 

 It is not like I go in on a whim. By the time I voice my conditions to my hubby I have thought long and hard if they are serious, is it just me over reacting etc….By the time I mention to my hubby, he will usually say it is better to waste your time in the ER and find out rather than sit and wait and maybe have things get worse quickly. He always asks if we should drive to Calgary and get the on-call neurologist. I always say no, that it is too much of a drive.  I dislike that knowledge level is not that good here. I dislike that I am going to explain more and more at the hospital. And then for them to say…it is not the hydrocephalus…it is my sinuses, anxiety, in my head, i am faking. Why put me on the defensive. Do you realize how much that hurts to me mentally especially when I am so much in pain and on the last rungs of hope. But when in fact they symptoms are my Hydrocephalus increasing because my body is fighting something. My neurosurgeon explained that Hydrocephalus symptoms will increase when there is something going on in my body. That my hydrocephalus baseline should return once what ever is going wrong in my body has been addressed.

So far I am three months of feeling off and I am not any better. The regular doctor gave me nose spray, I am taking allergy pills and I am now debating to go back to my Dr. Office and be a stronger advocate. The last time, the Dr. I saw thought I was a little aggressive. Hell yes! I am sick of not being heard. Sick of no solutions. Sick that they experts keep pawning me off saying not me…and saying I need to see someone else but no indication that a referral has been made. I am sick of the same cycle of treatment I had before my surgery five years ago. It is like they want you to fall through the cracks.

Why don’t  the Doctors and nurses just say…well your hydrocephalus symptoms are worse and that is an indicator that something is wrong in your body. Let’s figure it out so you can feel better. But no none of that. Oh hell no…no patient care…more like lets see if we can get her to go away. Truly our system is broken when you have to be a broken wheel, act like you are in severe traumatic pain (I don’t I get quieter and quieter as I focus on mindful meditative breathing and imagery) to be seen quicker and to be taken more seriously.

Thank goodness I have an appointment with the brain injury clinic in Calgary in April.  I know my Doctor there will listen to me. I am counting the days to actually be heard. Why is it that the brain injury clinic, endocrinology clinics and neurology clinics in Calgary take the time to really listen and find solutions. Why is there no out of the box thinking here in Med Hat? suggestions…the “let’s try this” type of approach. I mean really it does not take that much time to sit down and brain storm ideas. To verbally communicate, visually communicate with pictures from the computer. To take a risk and try something new.  


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4 Year Anniversary

On September 4, 2016 I celebrated my fourth anniversay of my brain surgery. I thought about writing that day but I couldn’t bring myself to write. 

There have been some amazing hurtles that I have overcome in the last four years. I have become a stronger, wiser person. My brain continues to heal as I push myself. Life have become liveable and enjoyable again now that we have found suitable meds. I have overcome on the other side of some very dark questionable times as well. I held out and did not quit or give up. I have enough awareness now to be blown away. I know in my head what I have accomplished, but so many people do not because having a disability that is not visible leads to many assumptions.

I still have my sketchy quirks to work on. I notice them now more than ever. For example, my sense of time is often out and I still have not found a good calendar program that has a great nag alarm for my android phone. I still think I can remember a lot more than what I can so I decide not to put items in my calendar and of course I forget. I often forget what I promise to do…mmmm three weeks of saying I will put the boys phones up for sale and I still haven’t done it. I remember, then start and get distracted and then forget until  I am reminded. I have a hard time with conversations still. I will get nervous and keep talking and talking and talking. I often forget the clues that the conversation is over. I still have a hard time with ending a conversation. I am not too sure if the person has ended the conversation or how to end without being rude or too abrupt.

My organizational skills of planning and connecting from a to b to c to d is still a work in progress. I am not walking in a circle in my room trying to figure out what I need to do first but I will go from basement to upstairs to get one specific thing and in that two sets of stairs, I will forget what that item was. I will look around and grab something, walk back down stairs  and start working on what I was doing again until I remember what I wanted from up stairs. The process then repeats itself numerous times  or days. So sometimes getting things done is painful.

I tend to hyper-focus on new things and block out everything…like kids, meals, laundry. I bought a cricut which has been taking up all my time. I am loving the fact that I am suing Adobe Illustrator, manipulating graphics and fonts to create items to sell. I am looking forward to developing my crafty hobbies into a small biz. I am even looking into furthering my education. I am looking at my art therapy post diploma rather than recreation therapy certificate. The post grad diploma is a step forward rather than backwards with a general certificate where they want you to take their technical communications course even though I could probably teach it. How to write an email, proposal letter, make a brochure, resume….yawn. No challenge there. The only problem is to pay for my course. I have no idea what is available out there for resources to help pay.

So many steps and mountains climbed. A few more to climb but it all seems achievable now. Here is to how great and adaptable humans are. How strong we can be and how we can continue to learn on a daily basis. I am truly grateful! I am truly grateful to have been faced with all of this. If I hadn’t been challenged, I would not have grown so much. I look forward to tomorrow, the next day and to see how fare more I will come in the future. 


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Bringing back the Food!

_MG_0069aOkay I survived the elimination food diet. It really wasn’t that bad. There are so many options to eat. You get to re-discover the real tastes of foods again. I also was able to experiment with foods I haven’t eaten in a long time or ever. Although I travelled in the southern United States and I tried grits (didn’t like), fresh beady eyed shrimp (good); I didn’t have the opportunity to try okra. (given that were were on a young person’s budget which meant we lived in tent and cooked our own food).  I finally was able to try okra and I loved it. I just need to learn how to cook it at home. I just hope it is not part of the nightshade family. I experimented with recipies. I made a bean and sweet potato soup, or what the boys call a stew. It was yummy and the boys even liked it (score!) The boys have loved the granola too! So much I am making it from scratch (easy peasy) as soon as I was able to find GF oat as the tiny bags as store are ridiculously priced. I saw a funny video and thought here I am writing about my experiences.  How to become gluten intolerant I know that there are plenty of books on this. I only read one (forget title) based on food intolerances and I never finished it as it ended up being a diet to lose weight book. What a crock. The book sparked my memory of allergy testing eons ago and gave me courage with food recipies (along with Internet) to move forward to see if my tap of a nose, rash, snots & bubbles were caused by food or other external factors. The only way you could lose weight by doing the elimination diet is really like any other diet is to cut calories and starve yourself. There really are endless good food items to indulge in.

I was so excited to bring back the food, I kind of forgot the second part of the elimination diet and went full bore into eating. Never trust a brain injured person (okay just me) to get it right the first time. I ordered a fast food burger and french fries (hey I am human) then ate/devoured it without thinking (can’t remember if I breathed at all during the feast). Of course I still have no idea which items of food were bugging my chest and nose as I ate wheat, dairy, tomato. Oops.. all I know is that my face felt tingly, I got phlegmy and my nose ran. Great.  What was I supposed to do again. Oh yeah…add back one food item every four or five days. Mmmm what to do…carry on like all is normal. and try, try again.

_MG_0060aSo after another food kafuffle or two or four, I have found out that I am able to eat corn, peanuts (not a big fan of peanut butter but fell in love with almond butter in this process), and soy. I will continue being gluten free for a bit. However I miss having a beer (nose runs almost immediately when drink it). I love cheese and have been dreaming about when I could re-introduce cheese. I went out and bought brie and herbed goat cheese to test dairy this week. I am a little dis-heartened as I had a fruit smoothie for dinner at a restaurant as the boys had burgers & ice cream for dinner (a treat from surviving their yearly check up at our family doctor). About 30 minutes after drinking my mango/pineapple smoothie, I was given a treat of some nice belly pains. So instead of calling off all dairy for the evening, I instead bring out my wonderful cheese, rice crackers and a glass of red wine after the  boys go to bed. Mmmmm the brie was soft and rich, while the tangy goat cheese went awesome with the wine. All went down smoothly. I went to bed and woke up coughing from a phlegmy choking feeling. Damn…not the cheese…I love the cheese. So I made a compromise with myself. I will try not to eat cheese daily but will allow myself to indulge once in a while. I do this as I working out food options for when my friend , Manj, the four kids and I take off to a cabin in Cypress Hills for a few days during spring break. Life isn’t black & white so my food choices will not be either. I will just have to live with the consequences.


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To Dream a little dream

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For the first time in a month I had energy yesterday. For the first time since before Christmas I left the house. I left the house for 1 hour on December 24 to delivery some small surprises to a couple of friends. Other than that I had been in the home since December 20th and hadn’t left. I was tired, sore and had to keep my energy saved to make it through Christmas. Not only did I survive Christmas, I actually enjoyed it. I actually sort of paced myself. I did a lot of sleep and vegging after. I have not watch so much TV as I did the three days after Christmas as I have in years.

I survived the last really bad flare from SJS. It affected my body with hives, mouth & lip peeling and blisters on my face. I also had swelling in my face and my eye was in pain and very dry. But the worst was that I experienced internal bleeding that had me very concerned. I went to emerg and they couldn’t do anything but told me to make an appt. with my GP. Well I would have had to wait for a couple weeks. I am glad my body finally settled down and decided to cooperate and heal. My hair is still falling out in droves so I cut it short as I kept clogging the drains. The hair could be falling out for a number of reasons but most likely due to SJS flare and the stress on the body for having to deal with SJS. I participated in the Educate before you medicate SJS holiday campaign and you can see the video here:


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I am really grateful for the strong SJS community on Facebook. However, everytime I read about a child that goes through this or see pictures of them with third degree like burns over large portion of body I cringe because of the pain they are going through. I feel the fear that the parents are feeling because they do not know if their child will recover. I hope more people can learn about this crazy scary reaction. I wouldn’t wish it on my worst enemy – that is if I had a worst enemy.

So 2014 is almost over and it has been overall a very successful year for me. My headaches are becoming more controlled. My speech has rocked! I think that is because my brain is thinking faster and I am uptaking information and processing information faster so my stutter doesn’t show itself unless I am getting overwhelmed with too much stimulation. I am able to read and say larger words like my medicine and scientific names or larger vocabulary words now. I am also knowing the meanings for some of these words too. I used to be able to do the Reader Digest vocabulary quizzes easily. Not so much now, but better than before.I still get easily tired but I am slowly building myself up. I am trying not to do too much. I have really limited activities in my life. I need to make sure my gas tank doesn’t go empty or else I will go backwards. I have been doing the brain injury re-learning thing three times a week. It is only an hour each time. Well recently I have actually been attending sessions for an hour. I was maxing out at 45 minutes for most the time. I also aim for three times a week, but mostly attend two times a week. The body doesn’t always want to do what the mind wants to do. I have been using the swim spa regularily and it has helped make me stronger. I feel good finally being able to exercise. I like that is is in the backyard because public places are too loud, too crowded that I can not function for long. I have been doing mindful breathing and meditative time. It has really worked.

My biggest accomplishment this year has been that my brain has re-wired my ability to dream again. I don’t mean hopes and dreams type of planning but actually dream when you sleep. This started about two weeks ago and I am loving it. I don’t want to get up if I am having a great dream. After my surgery, my dream world was pitch black. I then progressed to just noise and then flashes of lights and then partial pictures and the whole pictures and stayed that way for a really long time. My dreams are really messed up. Let’s not get Freudian or anything but I find them weird that I dream about my old job in Manning, Alberta but people from my job in Fort Nelson are in it. I think my brain is trying to compartmentalize. It is finally re-wiring and healing. The info is in there but it all mixed up. My brain has distinguished that they were both forestry jobs but can’t yet tell timeframes. Or something like that – I am not the neuroscientist or neuropsychologist. These dreams are action dreams like movies, with motions (not necessarily sound), somewhat of a story line or plot and I am just so excited that dreams are not a part of my life again. And that I actually remember some of them. My first dream that I had was that we were living in a warm tropical place with an awesome beach. It wasn’t very long but had action of the four of us walking and playing on the beach and then buy fruit from a vendor.

After Christmas, I stopped taking my sleeping pill. I have been using essential oils and breathing to help me go to sleep. I have been trying to get a healthy sleeping routine – well I am trying to at least. I am not sleeping as long, but I am sleeping more than without use of the oils and breathing. What gets me is the burning/ants crawling feeling is downright annoying at night as it is more pronounced.

I can’t have everything all at once and need something to work on in 2015. I can not wait for the new year. I have a feeling that is going to be an amazing year. That there will be many great things coming my way! Here’s wishing you all the same for 2015 too!


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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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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.