Howdy Hydrocephalus

Understanding my unique gyroscope


Leave a comment

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!

images (5)

Advertisements

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.


Leave a comment

Creating My Opportunity

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

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

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

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

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

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

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

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


2 Comments

March is Brain Injury Awareness in The United States

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

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

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

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

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

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

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

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

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


Leave a comment

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. 


Leave a comment

Bringing back the Food!

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

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

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


Leave a comment

To Dream a little dream

imagesCT0V1LQA
For the first time in a month I had energy yesterday. For the first time since before Christmas I left the house. I left the house for 1 hour on December 24 to delivery some small surprises to a couple of friends. Other than that I had been in the home since December 20th and hadn’t left. I was tired, sore and had to keep my energy saved to make it through Christmas. Not only did I survive Christmas, I actually enjoyed it. I actually sort of paced myself. I did a lot of sleep and vegging after. I have not watch so much TV as I did the three days after Christmas as I have in years.

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


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

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

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

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

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