Howdy Hydrocephalus

Understanding my unique gyroscope


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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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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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More than Just Surviving!

I found this great blog post and they get it!

Adjusting and transitioning after brain injury is a very hard but worthwhile process.

It is more often overlooked than addressed. When you are not given support or resources to move forward and find the new you it is a long process to gain footing to be able to move forward in a meaningful way.

It is easier for therapists to say you are just depressed or anxious and treat with a pill. I have experienced this and I just shake my head and think to myself “no shit Sherlock…Where did you park your squad car. And wonder if they would be saying this shit if they had experienced the same thing.”

Please read this blog post. https://tlcrehab.wordpress.com/

I think if the therapists, doctors, helpers had to spend a month in the shoes of a brain-injured person or persons with any other lesser known condition, their care, compassion and treatment suggestions may be completely different

 


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Chronic Pain & TBI

Chronic Pain is a beast. It is not pain from over doing it at the gym, lifting heavy objects or mountain biking, it is pain that does not respond to over the counter medicines and it is often brushed aside by stating that the pain is “psychological”. And when the pain doesn’t go away or get treated, your life can begin to unravel quite quickly. Sleep, cognitive, concentration, appetite, daily activities are negatively affected when chronic pain is not treated or under control. This then leads to anxiety and depression that only add the nasty mix and do not help in day to day living. Because your energy is now taken up by doing everything in your power to accept and move through the pain. You breathe, continue with limited activities, say affirmations, think positive, try herbal supplements and anything and everything that people suggest to try to find some relief. Until it all becomes too much and then you sink into that pit of despair because all the tools in your tool box no longer work. You question worth, value and place here on earth. You can not handle the feel of clothes on your skin, or even someone touching your. Your body is so inflamed that you are old beyond your years. You do not go out because any activity is no longer easy or fun. Joy and happiness are suck from your soul as you are bone weary with every move. You calculate how many years left and if you have the mental and physical strength to actually continue to be here in this pain every day until die. You start to think of ways out…anything to just get rid of this damn pain.  This cycle will repeat itself until….

You finally find a Doctor who understands that chronic pain is real and begins to treat the pain. There is not a text book type way to treat chronic pain. It is more like experimenting with different treatment options until a positive response is obtained. This approach takes time, patience and sometimes putting up with a lot of side effects from different medicines. 

My chronic pain is two-fold; the 24 hour a day migraine with the added bonus of cluster-like headaches that feel like ice picks through the eye. This pain is never gone but for the most part it is managed. The second part to my chronic pain is my neuropathic pain due to nerve injury or nerve mis-communication and response to pain. This has always been on the right side of my body. It feels like burning fire ants, burning and shooting pain that is continually there. Between my knee and ankle fluctuates from burning to feeling like wood. I have had this for five years and it will always be a part of my life.

However, last November, I went off my Pristiq because I told the Doctor that I was doing well and that I was not depressed so I didn’t need it. So I went off the meds.  Then comes January to March where I begin to lose it all. My Neurogenic pain is not just on my right side, it was on my left side too. My chest felt like it was on fire with the flames flickering upwards to my neck and nose. I was worried. My skin was horrible. The itchyness I had on my arm, chest, legs and back was so bad that I was looking like a meth head with open cuts.

Turns out that my Pristiq was not for depression but for my neurogenic pain. An off label use for it…oh didn’t know that. Thus my brain doctor will continue to see me because she just rocks at figuring out what the hell is wrong with me when no one else gives a shit. Also she prescribed this awesome cream that does not contain steroids but instead lanocain and gabapentin to help topically for my pain. Also endless itching is also from neurogenic pain. The nerves are just all messed up and sending weird signals.

So now my pain is not through the roof. It is not 100% managed yet…still annoying as hell. I really do not like the way my chest feels but I really have no choice but to accept it. I hope we can still find a better management solution. I am looking forward to my June appointment to see what my next trials will be.


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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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Breaking the Seal


I have not written since June 21, 2016 after my Endocrinology tests. There was not much to write about. Okay I admit there has been plenty to write about. My two little energy pills twice a day has allowed me to use the hash tag #summeroffun. I have had the most energy since December 2011. We did kayaking, paddle boarding, walking, easy hikes. I stayed up later than ever. I even painted two walls in the house spur of the moment. Don’t get me wrong these were not all day events.  Maybe  1-2 hour activities with a break then a rest and then another activity then break and even a third activity that day. It has been amazing on that aspect but I was still feeling fatigued and weak. I still was losing weight for July but from August 10th to today I was on holidays where I ate more than normal with big breakfasts, large dinners and plenty of junk food in between. I drank a lot too…those empty beer calories but those beer taste so good sitting on a deck BBQing. From that unhealthy summer binge at least my weight was stabilized and gained 2lbs. When I went to for my follow up Endocrinology appt. on August 22, 2016 I weighed 126lbs.So from undiagnosed hydrocephalus to brain surgery on  September 4, 2012 20 to August 25 , 2016 I was peeing every 15 minutes. I really have no idea how many times I would go pee because it would be in a sleeping pill delirium. I know always at least 6 or more times. I would get about 2-3 hours sleep and then the pee train would start. But hubby says that I go even then but I am most likely sleep walking  and don’t remember. So in reality I was getting very little sleep every night. 

My peeing was overlooked. I mentioned it to my neurosurgeon more than once and he just said I should drink less so I did. With my brain injury, I was not self-aware of how bad my peeing still was after surgery. I had other things going on too such as neurogenic stutter, getting my right side to cooperate, feeling confused and trying to overcome daily chronic pain. 

So I think last summer when I was camping at Elkwater Park I got really dehydrated. So I made it a priority to drink more water. I needed to get in my 8-10 glasses then an electrolyte powder and more water if out walking or in the sun. This is when I first noticed my peeing all the time. This lasted until about December where I couln’t take it anymore so I cut back my water consumption and went to myt GP. Between December 2015 until April 2016 I had many blood tests for Diabetes Mellitus (DM) and each one came back negative. 

I had begun to lose weight. I had no appetite and was nauseated all the time. My sides and belly would hurt. My hair was falling out all the time and I had very dry skin with a persistent rash that would not go away. I had only enough energy to take kids to school, crawl back to bed, sleep all day only to get out to pick up boys. Libido was non-existent. I would wake up each morning feeling like I was hung over.  I was going to the bathroom so frequently that I was going through at least one of those double toilet paper rolls every day. 

Ouch as my  nethers began to feel sore and every time I wiped it was like sandpaper. My life revolved around bathrooms. How long I could make it until the next bathroom. I would pee at least 4 times leading up to leaving house. If local short trip pee when arrive. Pee again at next store…followed the same pattern over until I got home again.

After my testing in June, I decreased the amount I drank even more. But nothing changed. All I can compare it to is if you are drinking with friends at a pub and go to the bathroom and they bug you about “breaking the seal and that you are in trouble for the  rest of the night”. 

So basically if you are drinking and finally go to the bathroom; your bladder will not hold anymore and want to go pee more frequently. So my life had become an out of control broken seal nightmare. That not only affected me but my family as well. That is until August 25, 2016.
I had my follow up appointment with the Endocrinologist on August 22. I found out that my growth hormone was great but my anti-diuretic hormone was not so great. He diagnosed me Central Diabetes Insipidus (DI).  The Doctor said that I most likely acquired it from my ETV surgery. He said that all I would need to take is one spray of vasopressin before bed (maybe one during day too) and that it will work quickly. That you could tell if the meds would work within a couple days. 

The appointment was positive but after being  to many doctors and on a Pharmacy of medicine and treatments that did not work I was really skeptical.  I had to wait until August 25th for my meds to come into town. I took it or tried to and went to bed.  I woke up the next day and felt refreshed. It was still a sleeping pill induced sleep but I was only  two or three times. I was amazed but still skeptical. It is the August 28th and I drove 3.5 hours without stopping to pee. It was the best drive in. A long while. I was not as tired and I was able to concentrate.  My vision didn’t go blurry either. Here is to re-balancing my ADH hormone, electrolytes and no longer being chronically dehydrated. Sorry toilet paper companies….you can shove your mega packs I will be using less of your products!!