Howdy Hydrocephalus

Understanding my unique gyroscope


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. 

Advertisements


Leave a comment

How many layers of an Onion

A long time ago in a blog far far away, I wrote about the cliche of how a TBI/ABI compares to an onion in my recovery.

Well now I am wondering just how many onions are there in this journey? Definitely more than one, two…three or a whole sack? Can someone tell me? I would really like to know.

I mean I am definitely way more cognitively aware this year, even my memory is remembering weird stuff but forgetting the easy stuff. I have been trying to cut down on the naps and pushing through with the aid of my sleeping pills at night again.

I successfully handled my son’s first hockey tournament, thank goodness for hubby to help get my son ready, ear plugs, across arena seating. I even enjoyed watching the games. I even did 50-50 sales. It took me a bit with adding and splitting funds as I had to re-count over six times but I did it!!!

I made it through the feelings of anxiety and overstimulation by breathing and sleeping. I felt so exhausted by Sunday, that I exclaimed that it was weird that Wy had energy and I was sapped when you would think that the person playing on the ice (Wy) would be the tired one. I now can work with the fish trying to go upstream type of visual & feeling in a public situation. I still have a hard time trying to watch hockey via netting; it is very distracting and gives me a headache instantly.

A really big accomplishment for me was not shoving a horn up a guys butt. We were sitting on the other side of ice away from stands to avoid excess noise and visual distractions. I had ear plugs in and of course dude comes and decides to watch the game where we were. OMG. I was so close to snapping, but I didn’t. I acted like an adult but in my head horn guy didn’t fair so well. Especially since the other team scored 12 goals and I had to endure that excessive horn blowing for all 12 goals and then some added horn blowing as well.

So many positives this year already but then when I have accomplished a goal of living, another little thing decides to become a challenge. I am not too sure if it is because I was focussing on issues that these ones have now become important to me. I have been to the doctor three times, have had blood tests once. I had a form for other blood tests, but lost it. So the good news is that I do not have diabetes but now we are thinking the my pituitary or hypothalamus may be acting up with hormone and/or body regulation. With that I really do not know what that means just yet or what direction we will be going. I guess this can happen right away to a person with a TBI, the next day or even years after the initial injury.

So here’s hoping to a sale on onions in the produce department because I may have a whole sack to peel layer by layer
IMG_0870.JPG


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

Sweet Success

IMG_7669Okay after I got out of the hospital in September, Chris and I started to look for a new house to live in. We finally found one and were able to spend two months packing. Last week we moved to our new house and love it. Chris and I had loan of a trailer and did a couple of loads so we could spend our first night in the house. The next day the movers came and after that it was a blur. Oh and at the same time I also rented studio space at the Hive Artist Hub.

I really tried to make an effort to pace myself. I would only do a little unpacking a day – except the first day (too much). I have been napping 1.5 hours a day and going to bed early 8:30pm but not falling asleep until after 10pm. I really tried to remember to eat and drink – especially after the first night. We don’t have the swim spa at moment – it is drained, and winterized until spring when we can get a new cement pad put in, so I have been trying to put in steps per day which includes walking the dogs. I know that 10,000 steps is too much for me so I go what I can. I have also been doing meditation and trying to be mindful of what I am feeling. I am trying to be aware. I didn’t go to brain injury relearning sessions. I missed all my alarms as half the time I had no idea where my phone was. Finally all action caught up to me today.

Wyatt this morning was complaining that he didn’t like the new house in the mornings because it was all too rushed. I apologized and said “I don’t have a morning routine here yet and I am so very tired this morning”. I woke up and could barely function and I had to deal with Donovan who was sick to his stomach as well. Brain fog, word finding, thinking straight, perception and vision, making sense, decision making and sleeping all day.  I hit the wall.

It may sound bad that I hit the wall – I knew it was coming, but just didn’t know when. When I talked to Chris he really was surprised I lasted as long as I did. He thought I would have been toast long ago. So in fact, this whole crazy busy week has turned into a wonderful success. My energy, strength, endurance and brain function lasted longer than it has in 2.5 years. I know I am getting better and better. I am still inconsistent in a lot of things, but I am seeing improvement.

It will take us months to organize the house, but we will slowly work on it. It has been the best move as there are so many boys for my boys to play with. I am truly grateful we too the giant leap to move. The next important thing is to get the studio space functional. I am at a loss of how to move forward (brain overload) and Chris will come help me tomorrow.

Next step is to get a new morning routine down pat again. That will ease the stress level for not only me, but for the boys as well.


Leave a comment

Give Me an E for ETV

There are two options to treat hydrocephalus – shunt placement or Endoscopic Third Ventriculostomy (ETV).  Neither treatment is full proof and can last a lifetime.  Neither treatment makes hydrocephalus go away.  It will always be a part of my life.

Because of my age and having obstructive hydrocephalus, I am a prime candidate for an ETV surgery instead of having a shunt put in my body. A dime-sized hole  will be made in my skull above my forehead (I always joke near old lobotomy locations).  A tiny camera is snaked through my brain until it reaches my third ventricle.  Images of my brain are shown on a monitor to help guide the neurosurgeon in making a small hole using a small knife or laser at the bottom of the third ventricle to allow the CSF to drain into a natural re-absorption pathway.

The benefits of having ETV surgery are no tubing and shunt in my body decreasing the chance of infection. There is less incision.  Less incisions = less pain.  There is also a lower complication rate than a shunt.  Shunts often have to be adjusted.  The surgery can be anywhere from 30 minutes to one hour.  It is estimated that 50% of the shunts fail within the first two years.  The success rate of an ETV surgery is 80%

The risk of anything going wrong is approximately 1%.  The most common is bleeding and fever. Where they are making is hole is near the hypothalamus so it is possible for short-term endocrine, memory, and diabetes issues.   The risk of a sudden ETV closure is 20-50% within five years of surgery.  It is not guaranteed that the ventricle size will decrease after intracranial pressure decreases after surgery. Positive outcomes may not be immediately noticeable because the CSF has to naturally drain unlike a shunt placement where success is noticed right away.

I have been told that my physical symptoms will go away and take up to two months to disappear.  The mental & cognitive functioning may take a bit longer.

A successful outcome means a shunt-free life, and the only downside is to monitor symptoms in case of a sudden closure.  I am confident that the ETV surgery will be problem free and I look forward to being back to my old self and if not my old self; discovering who the new me may be.