Howdy Hydrocephalus

Understanding my unique gyroscope

The Summer of Milestones

Leave a comment

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.

Advertisements


Leave a comment

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!


Leave a comment

Missing Me

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

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

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

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

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

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

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

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

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

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


Leave a comment

2015 Theme was being grateful and blessed

IMG_1246.JPG
2015 has been over all a great year with some brain recovery strides that were noticeable. Two events really stick out the most to me. Okay I must admit, they are the only two that I can remember. Sometimes having memory issues are a blessing.

The first big stride for 2015 includes finally finding a med combo to ease the 24/7 migraine pain. I am truly grateful to have the migraine pain under control. Our bodies and minds are amazing on how they adapt to situations like 24/7 chronic out of control pain. On the other hand, once that pain is gone it is mind-blowing on how quickly your mind and body forgets how to deal with the pain too as I recently had nine days of constant migraine. Let’s see how can I explain what the pain is like….something like being hit with the worst flu you have every had and still expected to function with work, family, and social activities. I don’t just mean slight body aches…it would be full body aches, head fullness, pain, nausea, slow thinking, slow moving, light and smell sensitivity. The full meal deal and you can not escape it so being resilient beings that humans are, you adapt to it. You minimize you life to the bare essentials and spend the rest of the time recovering to be able to fulfill the next task on the daily living.

The second was having my neuropsych assessment done. This has now put me on a more realistic course for re-entering the land of being a more productive person. This has re-directed my thinking. I have begun to look at my likes, dislikes, abilities, adaptions needed and have some viable options that are now presenting themselves. I still need to re-learn some software programs and do some more soul searching and viability of what my ideas are.

I am truly looking forward to what 2016 holds for me. The “sweet 16” year already feels like it will be great. Deep down I know it will be amazing, prosperous and know that what bumps happen will be easily overcome. I am wishing you all a wonderful 2016 and hope you all feel as positive about the new year as I do. I wish everyone mainly forward motion with 2016.


Leave a comment

Irritated

I supposedly had a massive migraine with aura that sent me to hospital to have IV to make me feel better. That happened Tuesday night, It was not like any other migraines that I have had in the past. I usually get aura such as visual zig zags, dots or lightning. I also get wavy vision. I also get a bit numb too. However, what happened on Tuesday reminds me of December 2011 when I dropped to the ground with a sharp pain. I had the same sharp pain at the top of my right side of head and then my neck hurt really bad. I laid down in bed and my vision went really funny. I closed my eyes and held my head hard to counteract the pain.

After an hour of breathing and working through the pain I got up to go to the bathroom and my right side was non existent. I walked and went into the wall. I couldn’t keep my balance, stand. My right side felt weak and very tingly.

It is now friday evening and I am still feeling like crud. My head is still kind of not well; my stomach is off and I am feeling frustrated.

It is Friday night and I am in a hotel room with the three boys (2 kidlets & hubby) who are loud, hitting each other, wrestling with the TV on. I spent 30 minutes trying to get a post for shout out saturday done and then had to spend another 30 minutes figuring out why apps were not downloading in our family account. As the noise level and interruptions kept increasing my level of irritation and ready to snap rose significantly. The words “oh for fuck sake…can’t you all just shut the fuck up” almost slipped out. But what ever little filter held and I survived.

Then I read some dumb ass article about how people who post motivational quotes are intellectually inferior. Wow…scientific research at its best. What about faking it until you make it…there is some sort of counselling jargon about changing from negative to positive mindset. Sometimes it takes many motivational words until things become seen in a different light.

I think bed and a knowout pill are calling my name. Hopefully tomorrow, I am filled with energy and smiles as right now I am thinking an ice pick lobotomy may just be the answer!


Leave a comment

I’m Back

Wow this summer has been one wild ride. My pain levels have been managed with my new med mix. This left me with having energy but with a brain with racing thoughts, low attention and a go-go-go never stop type until you drop type of mentality.

So I just let everything go and enjoyed just being able to actually be a apart of life a lot more. I had a fun summer with the boys. We had no routine, schedule or things planned other than our trip to Vancouver Island.

The boys ran crazy; they were a part of their own wild thing type of clan. I have no idea how much they showered (if any); when or what they ate (probably mostly junk food); how many hours of video gaming (The gaming machine did not overheat); how many hours of hockey, football, basketball, swimming or lacrosse (garage door & car dents accounted for). It is all a blur of running boys, inside outside upside down with a trail dirty cups, spilled popcorn, granola bar wrappers, shoes, wet swim suits and piles of dirty laundry and hidden smelly socks in various furniture.

I was unable to sit down and write. I physically could not site still to read, draw, let alone write. I really wanted to share this summer. There were so many obstacles that I have finally overcome. But my TBI brain wouldn’t allow me to focus on intelligent conversation, sustained attention and unjumbled thoughts. I am glad that I let my body adjust to the meds and let things come back to even keel as now it is mid October and I am able to sit still long enough and write. I actually did begin October 2, but I have no idea where my draft went…somewhere floating in some random person’s email probably.

Then my son broke his leg October 3 and we have been adjusting to that. Talk about mess up my morning routine (LOL) I do my best and some days we are on time for school and others we are not. At least I haven’t forgotten a kid yet.

I passed my 3rd year brain surgery September 4 and my first year Steven-Johnson’s Syndrome (SJS) recovery September 5 with some major recovery milestones. Pain mostly controlled. I still feel tingling and fire ants on my right side. My right side aches when I do too much. I can live with that! But I am doing oh so much more. I still require my naps to be functional, but they are not all day naps unless I go hard core non-stop for a bit. I can live with that! I still get headaches and migraines but they have an beginning and a end rather than a continuous pain that doesn’t end. I can live with that!

I still have sensitive skin, itchy skin and rashes still. I am hoping we can get a handle on this as I hate having lots of cuts and scabs on my arms, legs and back. I am looking like a drug addict. The intense itching really bugs me. I am glad that my mouth only gets irritated once or twice month. I can even floss my teeth now. It takes a lot of energy not focus on the itching. At night it is really bad.

Believe me I am ecstatic about all the positive milestones in my recovery and I don’t focus on my annoyances of this recovery, but i still one not to settle. I am beginning to focus on my next milestones. Sustained energy and steady cognitive improvement. I can see work in the future. I have no clue what type of work, but it does seem more obtainable now!

So I am back not only from my break from writing but I AM BACK to land of living instead of sitting on the sidelines. It just makes it easier to live a meaninful life when not in as much pain.


Leave a comment

3-2-1 Blast Off

IMG_0928-0.JPGOn my quest to find more energy and to nip my fatigue into a more manageable piece of my life. I read numerous articles such as Feed Your Body, Feed Your Brain – Nutrition to speed brain recovery. Then I began to read a book about an elimination diet to help your body heal and reduce internal inflammation. This spurred my brain and I remembered about my allergy testing I had done a long long long time ago.

I was having IBS and allergy issues when I lived in Fort Nelson, BC. The doctor there put in a referral to see an allergist. Chris and I drove the six hours to Grand Prairie, Alberta to have allergy tests done. I really wish I kept the list. I had reacted to a whole bunch of things. I was to avoid, eggs, wheat, potatoes, tomatoes and a bunch of other food I can no longer remember. I had also reacted to dust/dust mites and snow mold. I really wish I could remember more. However, I do remember looking at the list and wondering what the heck I could eat there was so many food items on it. The Doctor didn’t have any help for me on that. So I basically said thanks for the info and continued on eating as I normally had always done.

Skip forward 14 years and the options for food choices for people on an elimination diet are amazing. There are meal ideas, recipies, hints, tips and all sort of wonderful stories on the web.
He won’t Know it is paleo blog
The Urban Poser Blog
Gluten Free Goddess Blog
Purusing these blogs and other websites gave me inspiration and the knowledge to be able to test run a 21-day elimination diet. I put word out to friends and found out that Costco carried a gluten-free pancake & waffle mix, cup for cup gluten-free flour mix, organic palm sugar and gluten-free pasta. I went there and stocked up. I already had coconut oil and olive oil and flax seeds.

I began my peanut-free, dairy-free, soy-free, corn-free, egg-free, gluten-free, refined sugar-free and nightshade veggie-free diet. It really does sound very overwhelming but so far it has been pretty good. I fell for one-day and ate refined sugar so I had to set the clock back and start again for that one food category the next day.

I have successfully made home-made blueberry/raspberry gluten-free muffins sweetened with palm sugar. Palm sugar is a low glycemic sugar.
I then made tortillas. They were not round but free-form. I had a turkey wrap with spinach and strawberries and it was divine! Bread for me – Yay!
I have been drinking smoothies with Greens and hemp fibre, coconut/almond milk and lots of fruit for breakfast, lunch or snacks.
I have been having fun exploring and enjoying making dinners the most. Tonight I made a pesto pasta with sautéed beet greens, beans and a bit of chicken.

I am tasting so many amazing natural flavours. Thank goodness for lots of amazing options that I can experiment with. I hope that I will be able to notice changes by the end of three weeks. Here’s to blasting of with energy and increased attention span.

IMG_4780.JPG