Howdy Hydrocephalus

Understanding my unique gyroscope

The Summer of Milestones

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This summer has been amazing. Because I have been on my pituitary meds and energy medicine for almost a year, I have gained ten pounds, built a little muscle and endurance back.  Because of this I pushed the physical side more than I have since my brain surgery five years ago. 

Last summer I started with some easy flat hikes; paddle boarding more  and just flat easy biking. This year we have not hiked much but instead took to my old passion mountain biking. It was a spur of the moment when I bought my new to me Marin at a local bike swap. We went there to get the Wy, D & Mr. C new to them bikes.  We started the boys on flat trails, then logging roads and then to some trail riding. Well it was a test on my patience because every ride there would be one frustrated boy in tears because he fell one too many times or sacked themselves from not listening to me about riding the trail off their seats. Being the mean mom I am, I would say falling is apart of the experience. The bruises and cuts are stories to tell. I would say they are building balance and muscles that will help for hockey. We did 20km flat rides but shorter trail rides but often there teary statements of “I am never riding a bike again” to only ask to go biking the next day. Wy gave me the best compliment the other day. He called me a ” mountain bike expert”. I laughed and said “I am far from an expert. The last 50km ride I did was a long long time ago.” But It made my day and said “thanks”.

The biggest milestone took place when my brother, R-man and his two kidlets, C & M visited.  When I lived in the Kootenays many moons ago I spent a winter travelling 50km each way to learn how to kayak in the Nelson, BC swimming pool at night. I kayaked until I moved to Manning, Alberta. Six years ago, I bought a white water kayak again. I think I only used a few times before I was too sick to. Then the spring after my surgery I liquidated all my fun stuff I couldn’t do anymore; camera, studio equipment, kayak, TKD equipment, running shoes, cruise vest, soil probe, and identification books for work. I kept my Giant & golf clubs.

 Last summer we wanted to go white water rafting but we ran out of time. So after we were all together I called Canyon Raft Company located in Fernie, BC. I booked us all. I showed the kids pics and when I saw the looks of terror on two of their faces, I said that the pics were taken at higher water levels. We were rafting at low water levels knowing that I was telling a small fib. 

So we drive to Fernie Alpine Resort where we are picked up on the bus. The driver, who is one of the two owners, let us know about some Great Lakes nearby and hiking. In Elko, we got to see where there is a 40ft waterfall where some very experienced kayakers like to drop off of only at low water because even then it is dangerous. It was beautiful. We then drove to our starting point.

But before we got into the rafts, we got our gear on, wetsuit, helmet & paddle for most but not for someone like me that has body regulation issues. When I get cold my fingers and toes can turn white or purple. But I was prepared. I brought my swimsuit, on top of that I had my thin one piece thin outfit for paddle boarding, next the wetsuit, then water socks, I also grabbed a spray jacket and eye Glass band. We received a lecture about the gear and our hike down to the boats.

The hike down was beautiful. Sport sandals or shoes that can get wet mandatory!!!

At the bottom we met all the guides and the photographer. We received a very thorough safety briefing and then were broken into our groups for the paddle. Our guide has been in Canada six years. She left Melbourne for the mountains – water in summer and powder in winter. Along with us is the owner of the company and the seven of us. M is too nervous to paddle so she rides the trip but gives us all the best facial expressions that we see in later photographs. I am grateful to have an extra adult because I am not too sure how the three boys in the back are going to do….mmm…slack it and watch the adults work…I am almost 100% sure. R-man and me are in the front. With Mr. C behind me.  Once settled with the group photo taken we are off first down the river.  Whoa…hold it….we are the last boat in the line. I picked it because I thought we would be last….oh but no..here we go with the first two sets of Rapids back to back. All I remember is one is called something about marbles.

It is a weird feeling. Trying to coordinate paddling with R-man while trying to keep an eye ahead and listen to our guide’s directions. All I could think of was am I dong this right, trying to have myself breathe to calm down and not get overwhelmed and not to get distracted by the scenery or water.  Around the bend we go and wow the adrenaline is kicking. Once we finished we relax and wait for the other three boats. We have two fall out from one of the three boats but everyone is safe and put back in. During our waiting my right side is going all twitchy and my right arm feels weak. The thoughts that go through my head are “oh no…am I done. We just started. Can I paddle the entire  What is going on. Am I dehydrated?” I have some water and it was the right thing to have. Then we forward paddle into our third rapid…something about a shoe. 

 Here we are heading into the third set. We hit a rock with a jar and all stay in.  I go ass over tea kettle after we hit a second rock right when I am leaning out to paddle a wave. My paddle stays with me in a death grip. Mr. C see me go in and reaches for me and he goes in. When I fell out I couldn’t see a thing. I wanted to swim to boat but then was told to put feet up and cruise and that is what I did. I flew. It was awesome, you can see they had to throw the rope float bag at me. While Mr. C got to hang onto the outside of boat. I grabbed C’s paddle as it floated by me. When I get in, we are all laughing. Wy said he flew into C, C lost a paddle and D was flying and was heading for the water but was saved by our amazing guides. What a rush!!!Mr. C goes up front for the rest of the trip and we go have more rafting fun….brrrr. I am working so hard that I am still keeping warm. Win for me!!!

We make it through the rapids to an amazing float section with pristine coloured water. Then we have lunch. After lunch before we hit the canyon we get to try our hand at cliff jumping. There are three choices low, medium and high jumps. Of course Wy & C start the trend with the medium jump.  Mr. C does the large jump, I do the medium jump & M does the small jump.

Here they are jumping.then all our guides show us how it is really done.After this we hit the canyon with a waterfall, lots of whitewater, surfing a hole…during lunch I got really cold with purple fingers. I ended up lying on warm roaches trying to stop my teeth chattering. I ended up putting on the spray jacket for rest of trip, except cliff jumping and it saved me. there was so many much action that everyone was hooting, hollering, screaming and laughing.  We had to avoid a big rock by turning and hitting a rapid. It was the best rapid of the day….okay hard to choose favourites but I think the adults in the group agreed with this.D raises his arms in glory. We missed the rock. But the best fun for Wy, D & M was….riding the bull. When we hit the landing place, I barely could get out of Raft, my coordination, balance from my whacked internal gyroscope was completely off. I was shaky and didn’t clue how dehydrated that I had become because I was cold, I didn’t drink. Mr. C helps me get dressed in dry clothes by holding up towels. I was riding on a high that I had completed this milestone. I knew that I had used up all my spoons and would need recovery time but it was so worth it. We will be doing this every year from now on.

I was not the only one beat. R-man & Mr. C were sore; the kidlets fell asleep on bus ride and in car ride to Coleman. 

Mr. C always gives me crap that I push myself too hard. I say that if I didn’t push myself as hard as I do, I would still be shuffling my right foot and having a right hand that accidentally drops or throws things. I know self care is mandatory but so is also living and having fun.

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One Size Does Not Fit ALL!

It has been a while since I wrote. After the botched Botox and uncooperative Nurse, I had an appointment with my Dr. From the brain injury clinic at Foothills. I asked if I could she could send the migraine protocols that she used on me over to the nurse who did my Botox. I explained that she put needles in my jaw for TMG and in my cheek below my eye. I also said that they didn’t use as many needles and I was in extreme pain so I took desperate measures to get Daith piercings done.

She told me she could not control how the clinic did their Botox for migraines and said I should come back to the clinic in Calgary. I agreed.  

Yesterday I had my appointment with her. I told her I went to see a local MH neuro who basically was shocked that I was not 60 or 70 because I was too young to have Hydrocephalus. Then he asked me to explain how I got hydcrocephalus as he was looking into my eyes, and doing my reflexes. He then interrupted me and told me he really didn’t want to know, but he was just distracting me so he could do a quick assessment. Then He asked me why I was seeing him, I said I didn’t know. He said that Dr??? Sent the referral. I said I didn’t know who that Doctor was and then he said my GP’s name. (SIDENOTE: Oh it was from January when my head was in extreme pain and my Hydrocephalus was acting up due to the sinus thing. I wasn’t the most happiest patient at that meeting. If only the Dr. Said to me at the time that no worries your symptoms get extremely worse when you have a sinus problem instead of saying no nothing was wrong with me just a sinus issue. ) The MH neuro then said that he could not treat me for pain, but another local neuro may be able to. He then asked if I had seen a psychiatrist. I said in hospital, I had neuropsych tests done twice. He said “that is psychology” and brushed it off and said to me that he is referring me to a psychiatrist because I look anxious. I told him I was anxious because he was a new doctor that I had not seen before. Meanwhile, I felt not listened to, pushed off and the typical MH dr. Response of I am not going to treat you because you are not an easy cookie cutter type of condition. So then I asked him…what he specialized as a neuro in MH? He replied that he had no specialty because MH did have any. So then I questioned what did he do as neuro then. Well he was not to impressed and really just gave me a brush off type of answer.

My Dr. In at the brain injury clinic said stop going to these appointments. I told her that I didn’t know who set it up. I thought it was apart of me trying to find local Dr. To take over my case management and begin to treat me. I told her I didn’t realize it was from that Dr. I saw in January. I told her that yes I was upset, but I was scared and in pain due to not only the sinus thing, but also being off the Pristiq for nerve pain (but didn’t  know that at the time) so that the Dr. Basically set this up so I could see a Psychiatrist and get my crazy all taken care of. She told me that I did see a Psychiatrist at Foothills more than once with the testing and they didn’t find anything crazy other than being anxious and slightly depressed at the time.  She then shook her head and said that having Too many cooks in the pot just mess you up so now I will continue to see her ever three months. She will make sure I am on the right meds and get me the help I need. I am so blessed and grateful to be under her care full time again. She has been the best Doctor I have seen since this whole journey began. 

It is so true having that one Dr. Who cares about what he or she does and cares about their patients makes a world of difference. It is the Doctor who wants their patients to become as good as they can and not just say well you hit the two year mark…this is a as far as you go. It is the Doctors who DO NOT provide alternatives, different approaches, resources, empathy, caring and only see patients as a ten minute time slot that keep the TBI suicide rate so high.  TBI is like any other chronic illness, it is lifelong, uncertain, often filled with confusion, isolation, limitations in mobility, sleep, cognitive, executive functions and a wide array of other physical, emotional and financial challenges. Pain and fatigue are the rulers of your day. Pain and fatigue can make you bed ridden for a few hours, to a few weeks. This can affect your mental well being because of continually letting friends, family and work down.
The downside of these caring and compassionate and driven Doctors are that they are far and few between. That because they are empaths, you can see the burnout in their eyes and their actions. My Doctor has shown these signs for the last year.  You can see it in her eyes, how’s she holds herself and the lines etched in her face. I only hope that there are resources available for her so she does not leave this career where she is amazing!!!!!!!!! Or that she decides to put herself on autopilot and not care just so she can survive the long grind until retirement. 

How can I help her? We usually bring a gift card or some sort of treat for her but I forgot yesterday.  Any suggestions? Has anyone else experienced such a great Doctor but see how the corporate pressures of trying to get patients treated in their local communities is hurting him or her.

Please let me know. I think we all should try to rally around the good Doctors who take their profession to heart and string up those shitty cookie cutter doctors who really cause more problems than solutions. How can we make the Canadian Medical system better rather than see it become worse and worse.


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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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Water Deprivation & Glucagon Stimulation Tests

I had started this post at least three times. I had even started writing but then there was a glitch and my iPad shut down. I lost what I had written. Then I couldn’t even access what I had started. Duh…Wordpress updates created new menu layout. Crud talk about not reading what is right infront of my eyes.

So the lowdown is that for me the water deprivation test was easy peasy compared to the glucagon stimulation test. Going without food and water was not an issue. What was an issue for both test was me forgetting my sleeping pills so I was up peeing until 3 each night before I passed out from exhaustion.

I had to do the long haul water depreviation test from 7am until 4:45pm. I had to pee and give blood every hour. I was given a saline solution interveniously around 3pm because I wasn’t dehydrated enough. The weird things throughout this testing process is that my urine didn’t darken and that the amount didn’t decrease. So what did I do all day? Sleep mostly, my vision was acting a little wonky so I really couldn’t read. I played unblock me and look at my pictures maybe for ten minutes each hour. The lights in the room were out for most of the day becausee my head hurt like hell. Chris came for 4:30pm with two smoothies that I had to wait to drink until my last pee and blood sample time. Then I drank  quickly and had to wait to see if I had some sort of reaction. I then had my final blood pressure test 113/75 and was sprung for the night. 

The next day was awesome. I arrived before nine and led to a nice warm room with two unique reclining cushy chairs. I was given warm blankets and heating pads. It was like being at the spa. Then I was set up again to be able to draw blood again. This time it went really quick because we used heating pads to warm up my arms so my wobbly evasive veins cooperated. I felt that this was going to be an easy test like yesterday. I was injected with Glucagon. The nurse warned it would hurt or burn. No didn’t feel that and was positive that all was going well. I dozed off. I felt my arm getting eaves and then of course about  an hour after the injection I had to go pee. In the bathroom I felt a little off. When I got back the nurse took more blood and commented that I didn’t drink that much water. I told her I drink much because I didn’t want to be sick to my stomach.  Then it was like a switch, I felt really sick to my stomach. Chris grabbed a garbage can and the nurse came running with one of those tiny paper containers. Thank goodness there wasn’t much to come up.Then I broke out in a sweat and I got dizzy and really hot. We had to get all the blankets off and my hoodie off with keeping IV in. Then I felt like I had to got the the bathroom. The nurse and Chris tried to stand me up but I couldn’t stand. The stomach cramping started and I started to shiver. The bathroom was not a priority anymore. I curled up in a ball and was covered in blankets again then I passed out. All these sick things didn’t happen over a period of time but instead minutes. I felt like I was hit with a bad stomach flu or food poisoning. 

When I woke up I felt better but tired. The test was almost over so I guess I was out for a couple hours. Then the last blood draw down and was allowed to eat. I ate  what we brought two Apple juices. I really had to go the bathroom but before I could stand I had to get my blood pressure taken again. It was down to 90/50 so I was not allowed to stand. I was offered a bedpan that I declined. So I waited and continued to eat more food. After I ate two packs of cookies my blood pressure was taken again. It had risen enough hat the nurse let me stand but accompanied me to the washroom. I started to get the shakes. When we got back to the room I had to stay a bit more then had my blood pressure again. When she took it again my blood pressure had risen to 110/70 and I was able to leave. Chris had parked down the street and it took a bit of slow walking to get there then we went to a nearby baker to get treats and went back to Medicine Hat.

My stomach felt sore and I had even less of an appetite for almost two weeks after. I couldn’t even stand the smell of meat.  I have not received my test results. One of the tests had to be sent to the Mayo clinic in the US because there is no labe in Canada that does the testing. 

In the meantime my brain injury Doctor prescribed me a short term/acting energy prescription that has been working.  I had the best birthday in four years. I have been on it for two weeks and this morning I needed. A body rest day so I didn’t take any pills.

Here is to hopefully long term positive solutions!


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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