Howdy Hydrocephalus

Understanding my unique gyroscope


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Building Endurance

This year is all about my spoons. I am taking great thought and consideration in my daily activities and routines…okay for the most part. I have only a couple over did it days in the last two months rather than one or two a week. I am feeling positive that if I keep this strategy up, I will see more improvement.

So how am I doing this? A variety of ways.

  1. I bought four Echo Dots for the house. When I first saw the ads on TV, I wasn’t too sure it would be right for me. I spent a couple weeks surfing the net and finding lots of great information such as this article sharing some of the benefits that assistive AI technilogy can help people with various abilities. I was not getting any help with the local brain injury clinic so I took the plunge and bought four. Each boy has one in their rooms; there is one on the mainfloor in kitchen and one that travels with me in the car, at my studio and in the master bedroom. The Echo Dot helps me keep organized. 20180208_110948_HDRIt will tell me my missed notifications and what I have upcoming. I can set various alarms such as to wake up, eat, medicine, drink, pick up kids, remind kids have shower etc…. I can drop into the boys rooms and tell them it is dinner or they need a shower. I can make lists by telling Alexa “to add…to my list”. There is so much that it has helped me with but I will need an entire blog post to tell you about my discoveries.
  2. We got a family membership at the local YMCA where I have been working with a friend who is a personal trainer. She has introduced me to TRX suspension workouts. These workouts are great because I do not have to worry about falling. I use my own body weight and do a short body workout…ten minutes so I don’t overdo it and spend two days in bed. With her help I have begun jogging again. We walk one lap and jog two laps for 15 minutes. I was scared to get running shoes because they always had these overhangs with the sole acting like a heel so I would lose my balance easily. However, after much searching I found the perfect running shoe and love it. It is light and doesn’t have the heel thing so I feel secure. It is a Nike running Shoe that even fits my narrow feet awesome. I was so happy to find a pair. When my friend is not with me, we found out that an eliptical machine is the best machine for me. I can monitor my heart rate and hang on so it makes falling off less of a chance. I am supposed keep my heart rate at 145 bpm so I don’t hurt my head. I use a FitBit to help with running and the rest of my daily routine. I don’t have to scroll through all the screens to get to continous heart beat like my previous fitness band. I almost fell of the eliptical about ten times because I kept trying to monitor my heart rate. Now all I need to do is either flick my wrist for screen to light up and there it is! Easy peasy:)
  3. The third major routine changer is bring back my wall calendar and paper calendar. I now function with my digital calendar, wall calendar and paper calendars. I use a Daytimer 30 day wall calendar.  This calendar sits right beside my laptop computer20180208_110921_HDR

The other side of this calendar has a 60 days. I used that only before and hated it because I can not write small enough. Now I use the 30 days side can almost fit most things in. Above is my calendar and it is not filled out all the way. I use different colours of  ultra fine dry erase markers for each family member. It has been working awesome. 20180208_112629_HDR.jpgI also use two two Blueline miracle bind books. One is a weekly calendar. that gives me room to jot down everything and goes to 8:30pm and we have a lot of hockey or volleyball at those times. The second is the teal book that is undated note organizer with pages that can move in and out of book or into different sections based on my notes. I use my Google keep for mostly links and other stuff that I find interesting, but I can not put anything else on it as I will forget to look. The teal book comes with me everywhere but my planner stays by my computer so I won’t lose it.

4. I forgot because I now carry so much stuff to keep myself organized…I needed a bag to fit it all in. I am not a purse person, but when I do I use a crossbody bag. Even then if I put it down, I may forget about it and walk off with the bag lying on a restaurant or hockey rink seat. I began my search…there were bags that were too small,  too fashionista for me, or way too large. After about two weeks I took a chance on a leather backpack that could fit my ipad, apple pen, keyboard, wallet, phone, sketching pad & pens, phone charger, water or coffee container or both and a snack or two. Often it carries hockey balls and hockey tape as well! This leather backpack did not break the bank and looks nice enough I could wear it out to a restaurant. It is big enough that I have not forgotten it anywhere…yet!

Of course I am working on a bunch of other stuff too but this post has taken up a lot of my time today and I still have to put five listings on my Etsy store. It is called Crowsnest Cre8tions and I make downloadable posters and graphics. isla_280x280.29169110_36m4np9q I haven’t made much money yet…but slowly I will get there too! If interested in earning free listings and opening up your own online store. Check out Etsy here.

Disclaimer: The blog is a documentation of my life living with Hydrocephalus and Brain Injury.  It is not professional advice but tools and techniques that have worked for me via trial and error under the guidance of my medical team. Everyone is different and what works for one person may not work for another. Consult your medical team. The links above contain affiliate links. This means that at no additional cost to you; I will earn a commission if you click-through and make a purchase.

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Oh Sleep how I missed You!

For over the  last five years I have suffered from inadequate sleep from my crazy re-wired brain. Sleep is one of the most important activities to allow your brain to heal itselt. That is why patients are given sleeping pills in early part of the healing process.

After that you given suggestions to help with proper sleep hygiene.

This often include:

  1. Limit naps to 20-30 minutes. This makes sense on paper…however when you are fatigued and sleep-deprived you nap. When you dealing with a life long chronic condition and need to use the spoon theory to survive and educate people you nap. I really don’t think the regular doctors understand. Limiting naps may work for the “normal” person who is going through a small patch of insomnia but for us Spooners naps are the bridge to help us make it through the day.
  2. Limit caffeine consumption. I love coffee and I still have my coffee everyday. Coffee has often held off migraines for a short period of time for me so there are benefits to still drink it. The only thing where I limit my coffee consumption  But I do not have coffee past noon. I do not like decaffeinated coffee and often caffeine free tea gets a bad rap. However, I found a few teas that I just love. These teas taste hot or cold and you do not need to sweeten with sugar. My current favourites are Celestial Seasonings Bengal Spice , Celestial Seasonings Ginger & Turmeric Tea and Tetley Blueberry Ginsing tea. I tend to like the spices that make me feel warm and cozy.
  3. Exercise daily. This is a very hard one to do when given a new life with a chronic condition. Prior to surgery I was very active – runner, Tai-kwon-do and I worked outside so I was fit and had lots of muscle. After surgery I wanted to exercise to my previous level. It basically took me up until recently to understand it is not the amount or intensity that matters. I can exercise for as little as ten minutes. I love how I feel! I use a wooden balance board to help with my right side and core. I also use the yoga half ball with handles. I started with resistance bands without handles but now prefer resistance bands with handles. I also walk not run!
  4. Get enough sunlight and darkness. This supposedly gets the sleep-wake cycle back to normal again. I live in Canada and the weather can get horrible in the winter so I use a Light Therapy panel. This is blue light which gives me headaches but I wear tinted prescription glasses all the time to alleviate. I also take higher than average doses of Vitamin D as prescribed by my Doctor. If it summer one fun way to baseline your sleep-wake cycle is to go tenting for three days with no electronics.
  5. Don’t Eat or Drink too much before bed. Avoid the foods that cause you upset stomachs or build acid. Too much fluid may cause you to get up numerous times a night disrupting a good night’s sleep. This is a very personal thing and experimentation is needed.
  6. Relax before Bed. This means different things to different people. Some people chill in front of the TV while others read. Some do Yoga or Meditate. I often read and listen to diurnal Beats or Meditative Music from Amazon Music. We have been Amazon Prime members for years and love it. Try Prime Membership  Amazon Music, Video and Photo are some of the benefits. not to mention the awesome shipping times. This saves so much time and energy.
  7. Create a Good Sleep Environment. When I first heard of this, I was thinking WTF. Well we don’t have a TV in our room. My hubby watches his shows with headphones via his tablet. I spent almost two years trying to find a pair of wireless headphones that would work for me. I found a great pair of reasonably priced wireless noise cancelling over the ear headphones that fold with comfy foam and fit my head in all the right places. I don’t watch TV on my tablet, but I do read online books and listen to diurnal beats to relax and fall asleep. The biggest thing that I love is my how my Apple Ipad has a night mode so I am able to read without all the blue light. I also love how I can turn down the brightness and also change my books writing to grey. No one can see my screen at night except me it is so low and with a muted amber glow. I am so sensitive to light that having all these features allows me to comfortably read and relax. Setting the room temperature for proper sleep is very culture and personal dominant. However the bestest Christmas Gift ever was from my hubby. I had read about the benefits of weighted blankets. He bought me a single sized 15lb blanket from YnM and I have been sleeping throughout the night. It was a Christmas Miracle.

I have been sleeping like a baby since December 25. Except when I didn’t bring my new favourite blanket to Coleman for five days. Next time I will haul it with me. I have been extremely grateful and appreciative to have sleep back in my life.

It has made me think clearer and be more productive…okay I am still a squirrelly mess but I feel like I am being more productive as I try to stay focussed.

So I am very grateful to a wonderful start to 2018. I can see so many positive changes happening especially with having a solid night’s sleep!

Disclaimer: The blog is a documentation of my life living with Hydrocephalus and Brain Injury.  It is not professional advice but tools and techniques that have worked for me via trial and error under the guidance of my medical team. Everyone is different and what works for one person may not work for another. Consult your medical team. The links above contain affiliate links. This means that at no additional cost to you; I will earn a commission if you click-through and make a purchase.


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2017 is Ending Thank God!

dec2017feeling

I knew that I hadn’t blogged in a bit, but wow three months. This year has been a complete lack of writing therapy. Maybe that is why at the end of 2017 I feel so disconnected, blah and like I am a trainwreck going steadily downhill without any brakes and picking up speed with no end in site. It is not a good feeling.

I try so hard to get things done. Great business idea, get stuck, can’t connect the dots. Ask for help and then the REDI people are not computer knowledgeable. Feel like I am left standing in the dark trying to do this by myself so I give up. Don’t get a phone call or text for a month. When I do…I am feeling frustrated, angry and directionless. Yes I need help but why should I ask…when I will be told that no one has the skills to help me there. I get confused when they ask what i need help with and my goals, direction. We had a list of stuff of helping me connect the dots, figure out priorities and all that stuff. Then they left me to work independently…well that worked like shite. Where can I go? What can I do? I don’t have a clue and do I trust these people again? I have no idea. So I have shelved my business idea until 2018. I decided to work on my Etsy store. That has been good and very time consuming. I make lots of stuff but then I don’t remember where things are or my passwords and takes lots of time try to get around that.

Hockey has been a time consumer. It takes so much energy out of me.

Been trying to figure out why my fingers and wrists hurt so much since January. I have gotten weaker and weaker.  First set of Blood tests don’t show anything. Need to get more done and then a nerve conductivity test. It is hard to keep upbeat and positive when you feel like you are mentally and physically deteriorating.

I am so glad christmas break is coming up and we are not doing a thing. No christmas dinner, no big events. I need to sleep and just recover and do some self care. I will be climbing back into my cave and not coming out until the Pee Wee Hockey tournament January 5.

Oh yes there is little in my bucket today for positive LOA, mindfullness and go team rah rah rah. Usually I am upbeat and all that jazz but to turn my frown upside down will require more energy than what I have at the moment. I have a list of things that I need to get done but I think I will be heading back to bed. Maybe it is the wind that aiding to create this ominous veil over me. I didn’t ask for this crappy TBI, Hydcrocephalus and the shitload of other ailments that are all invisible. I wouldn’t wish this upon anyone. Somedays it really does just suck! To be high functioning computer literate person in a community where supports do not have the skills required to help you makes you fall through the cracks and feel that maybe you do not need help but to only fall flat on your face again. Come on I need help getting up this fucking mountain. I just don’t know what or how to do it.

Signing Off

A walking grinch like zombie who is optimistic that 2018 will be better!

 


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Warning Evil Villain Neurological Strikes Again!

images (6)I was all prepared to wait another week then give you a great update on my personal chaos but then something important came up and I am utilizing my high dis-tractability to write about this or else I will then overthink about it and it will consume me all day until I get it out.  So here goes…this is what has been on my mind and in my heart creating me to grief since yesterday.

My youngest son wanted to play ice hockey this year. It is his first time and we had player evaluations yesterday. My oldest son’s coach from last year son was in the same evaluation group. This made my youngest son happy to sort of know a couple boys on the ice. We were looking forward to the usual casual catching up about summers etc….

However, when the Mr. S and his family walked in, I noticed the gait, constricted body movement,  grimace of pain and slight facial difference. I said “it looks like you are in pain…did you hurt yourself?” Mr. S responded “I lost a battle with a mosquito.”

All I could think was Whaaaattttttt….the……F. This is a load of crap. He is so young to be hit so bad. He is a good guy…his family is good people. Why can’t this shit happen to bad people like the asshole who stole a truck last week, caused two different high speed accidents in two different intersections and takes an innocent 18 year old’s life; then decides he wants to try to take the Police Officer’s gun in the hospital. Those are the assholes that deserve this shit not a person who works, volunteers his time and is decent. I always shake my head as to why this happens.

So apparently Mr. S is one of three people who contracted West Nile this year in Alberta. And of the three “fortunate” people who were bit by the special mosquitoes, he of course he drew the lucky wild card and was hit extremely hard with both severe physical and neurological effects.  Everyone is hopeful that the effects are temporary and not long lasting or permanent. I know I am hoping there is not long term effects. But when anything affects the central nervous system you never know what will happen. I know neurological re-wiring does happen and continues to happen with me but it is a very slow and I admit frustrating process.

images (22)I think it hits too close to home and I know the enormous amount of grief, guilt and loss person that is happening to Mr. S. I still don’t understand the family perspective entirely. But I can see the pain, sadness, uncertainty, trying to hold it together without breaking down and trying to be positive in Mrs. S eyes. I can see that the kids will grieve, be angry at times and frustrated, but the love will always be there. I see the fear, uncertainty and the ominous overbearing unknowing that lay ahead. I see the hope for continued recovery.

images (3)I also wonder if they are provided with all the resources the community has. I know we weren’t. We were not giving all the other stuff other than prescriptions, occupational or physical therapy. There is more out there but information seems to always get left behind.

  1. Get into a chronic pain management clinic rather than just Neuro or GP
  2. Occupational therapy runs out…Brain Injury Clinic can help with memory, distraction, daily activities with both an one on one sessions at BIRS and workers who can come into your home.
  3.  Mental Health in Provincial Building has people you can talk to. By yourself, couple, kids and family sessions available. This is a big stressor event and we are never taught how to hand it. Everyone assumes we can “Just Deal”. When you lose your identity quickly depression and anxiety crop up and almost go hand and hand.
  4. Medicine Hat Hospital Recreation programs are amazing and help you explore new or adapted leisure and recreations options. They have great programs such as walking, art, and others but I forget what.
  5. The Healthy Living program that is run in a building near the hospital is a great program. It was a safe place to work on building coordination, strength, and fitness.
  6. The YMCA program has an adapted fitness coordinator
  7. Community Futures Disability Entrepreneurship Program for those who are finding new career directions in life.
  8. MH Adaptive Sport is here in Med Hat with amazing people. It is for people of all abilities not just wheelchairs which I thought.images (8)

That is all I can think of for now but I am sure I have missed some very important groups that I have used and continue to use.

But one of the biggest things that have made a positive impact in my life has and is laughter.  Humour and joking is one way to break the ice with those who are uncomfortable when they see you for first time in a while, as well as with family on a daily basis. Humour and laughter just naturally cycled in being positivity in our lives. From that it spurred gratitude and mindfulness…of course I am continually working on the the mindfulness.  But as a dear friend of mine who is a two time cancer survivor and now officially conquered the big C always says “Any day I am turfside up is a great day” This so true for all of us as we take the crazy journey through life. We all often get wrapped up in the fast pace and stress of getting it all done we never really take a look around to appreciate the simple things.

images (2)I have always hated mosquitoes, black flies, deer flies and horse flies especially when working in a black spruce stand where you are basically a free diner with a neon sign that says open for business…free blood. You have to walk around looking like an alien in a bug suit because Deet is just an appetizer for those hunger little buggers. So I had to look up what West Nile was again because it has been a while and my mind of course is a sieve. So West Nile is a mosquito borne disease that usually doesn’t cause and symptoms or some very mild flu-like symptoms. More information can be found here. But the virus can spread to your Central Nervous System and create long-term havoc. There are aggressive treatments but there are still no stats on recovery rates which really sucks. Prevention is wearing bug spray and screens…limited which is even more suckier. I hate wearing bug spray and screens are only as effective as the amount of doors opening and closing or how many cat claw holes you have. I know we can not live in a bubble but really it just not enough.

Well thanks for letting me ramble with the keyboard. Hope everyone has a wonderful day! Remember take time to slow down, breath, feel the breeze and sun on your face and cre8te something for you!

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LA Kings support Hydrocephalus Awareness

download (4)I remember seeing an article about how the LA Kings support Hydrocephalus Awareness and Research. Finally I remembered about the article and looked it up.

LA Kings Support Hydrocephalus

It is great to see that some high profile teams are actually supporting this cause. To date three NHL teams have supported the Hydrocephalus Awareness; LA Kings, Anheim Ducks and Washington Capitals. It would be great to see more professional sporting teams support Brain Injury Awareness and Hydrocephalus Awareness. This would be great because any sport head injury can cause a brain injury and if it was severe enough hydrocephalus can also be added to the mix.

To say that Hydrocephalus and Severe Acquired Brain Injury has changed my life dramatically is an understatement. I am fortunate, I do not have a shunt, but I do have an ETV Free Flowing CSF hole that could close and malfunction sending me for another brain surgery. Also my vision has been affected from the Interncranial pressure. I still have issues with my one eye and if there is an increase intercrananial pressure, it can negatively impact my vision considerably.

I am not angry or upset with this new life time journey, but continue to fight daily for small improvements in my life. I always hope that there will be a new medical soloution or strategy that can help make my time here a little better. Whether that be reducing pain, increasing executive functions, visual improvements, increasing energy and controlling my wacky right side which has been getting weird again. For example, I was painting on a picnic table this weekend and my family was sitting around the campsite when all of a sudden my paintbrush flew out of my right hand…and the weird thing is that I am left handed but thought I should try to do some broad painting strokes with my right hand. Then this morning I go to sit down on couch to write this post with open laptop in left hand and contigo coffee mug in right hand. As I sit down, my right hand squeezes the drink button and hot hot coffee continually flies in air as I do not realize my hand is hitting the button all over couch, laptop and my burning my leg.

images (9)All I can say is that Brain Injury and Hydrocephalus is quite the adventure and that more education, awareness and support are needed!

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.