Howdy Hydrocephalus

Understanding my unique gyroscope


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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
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2015 Theme was being grateful and blessed

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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.


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Volunteering the Next Step

I hope to take big steps in my life for 2016. I am wanting to volunteer at the hospital to help with the recreation department. I know it will be portering and just helping out, but at least I will be able to see what the job entails and how I react in a hospital situation.

I am saying that I can only volunteer five hours max a week and those five hours can not be done in one day. So I am thinking two days a week for 2.5 hours. I know I can handle that…or at least I hope that I can handle that and maintain doing it for a period of time.

I am so excited…..BUT! I had to fill out an online volunteer application. This weirded me out. For example, it asked about me. Now what do I say there…I had no clue. I am human, female, breathing, alive but a little kooky and broken at the same time. So I scrolled down to the next question. Work experience.

Easy Peasy! I listed off that I worked in the environmental industry. Did contract management ranging from tree planting, silviculture, bridge and road engineering. My largest project was 20 million road to help get approved, built and inspected. I worked in compliance and enforcement where we inspected activiities and tried to work out problems without resorting to enforcement. However, I have and written crown council reports and investigation reports. I worked as a website coordinator for a government organization and had a budget for 120,000 for one website and 40,000 for another website. I took photos, worked with film crews and interviewed people. I also taught at MHC for one semester before my surgery as I experienced hydro induced dementia like stuff. (I still feel guilty for not being a good instructor…showing same video like three times) I loved my work. Work was my life that is the green in me coming out. I am a Green/Orange mix with True Colours.

However, after I wrote all that I was like wow…impressive but I am no longer that person. I can’t even pretend to fake who that person was. Although it never looked like I was organized, I was. I was able to problem solve and think on the fly. I could remember legislation and understand it when I read it. I could easily navigate, read maps, GPS, drive long distances, work long long hours and get up early and do it again. I supervised fire fighting crews and even been on nine wildfires as a sector leader. I could remember regular and scientific names of plants, shrubs, trees, soils, rocks etc… I was able to stand up for myself and hold my professional standards & practices even if it meant pissing people off. I was good at that . I would frustrate the bejesus out of contractors and companies because I would take any shit for their short cuts. I was a fierce one and passionate to boot!

Then it asked for education and awards. So I fill out scholarships,, awards, and my degree, diploma and certificates that i have earned. So now I know the meaning of looking good on paper and really sucking in real life. You know the potential hire that had a great resume and interviewed well but when they got into the job, they just plained sucked and you know exaggerated the truth…god I look like one of those people. How embarassing except I am not lying.

I am at a loss. How do I represent myself now? I have no clue. It almost feels like I am lying when I put down my work experience and education because it seems like so long ago. I struggle with so many things that used to come to me instantaneously and now requires time to think about thinks, process, work out, organize steps etc….

When the person interviews me for volunteering, I am really not too sure what to say. I really no idea how I will perform, if I will make it to every volunteer day or anything. It is like a blank slate in my head. I have nothing to go on.

But I need to go through this; it is the next step in my recovery to get back to the “real” world. I will figure it out and find out what the new me can do successfully at this time and find small goals to work for in the future. It is just today I once again realized the truth in what the Docs saying a seven year recovery time. I am almost half way where.

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The Call

Yesterday I got a call from a Dr. He phone to touch base with me because he has a conflict in appts. and most likely will not be at my appt. on monday. However, his assistant will be there administering my tests. He then asked me what school I applied for. I told him I hadn’t applied to anything yet. I told him I didn’t know what I want or was capable or suitable for me to do.

He asked if I wanted to attend Medicine Hat College? I said that prior to and during my dementia phase I taught at the college for one semester. I said I had been accepted into a Master of Science program at Royal Roads. I told him that due to a lot of factors I can no longer perform in my old profession as I had once had. He said he reviewed my first neuropsych.

I told him I was looking at online Recreation therapy assistant program, art therapy program or masters of counselling or graphic design. But I am not too sure if I could pass any if I took the courses.

I told him that I could write more freely now. That my typing speed made it easy for my fingers to get the words out without thinking too hard. Not like it used to be when writing (excluding bad days…avoid puter then). That my pain meds made my hand work better. That my eyes could take computer longer.

IMG_1223.GIFI told him that I could read books…lots of books…understand the words. BUT and a big but was that I have a hard time understanding context and following story. Subcontext and underlying meaning…forget it. Just like I have a hard time understanding sarcasm and jokes these days, the higher part of thinking is what I am having trouble with. The critical thinking, analysis and all that jazz.

I told him that I wasn’t wanting to waste money if really there was no way I could improve. I need help in improving what was once so easy for me. I was use to be able to draw inferences and bring together ideas for an arugment easy. Now I read stuff and go WTF.

So after what seemed like 30 minutes of talking on the phone (it was probably less than 10) I hung up with a follow up telephone call appt. the 23.

Tomorrow night, hubby and I head to Calgary for my appt on Monday. The first starts at 9:00am. The second appt of the joyous botox shots at 1300 and if I need more tests, I finish the day with those. Boo Yah…getting to getting the call and hopefully more answers to re-work this unique brain of mine


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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.


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The battle between a clean deck and empty energy tank

IMG_3591This was my battle and I won. You would never think that a deck could be so sneaky and ninja like could you. But for a person such as myself recovering from a TBI/ABI with major fatigue issues a clean deck can be a nasty fight. First off, I actually “noticed” how grubby our back deck was. I wasn’t distracted by pain or other stuff that can “blind” me to seeing how the world is around me. Second, I moved all the furniture out of the way and then I cleaned the deck by mopping it. I also conquered the deck from start to finish in one go; not my usual family frustrating chain of events.

That does not sound like much to most normal energy people, but this is an amazing step for me. It turned out that the deck is not tan, but really grey. It looks so amazing except for the three steps I forgot to clean on the one side of the deck. Can’t expect perfection when progress has finally started to show up. Oh well – a person can compare colour differences more easily now. I am so over the moon with my new found energy! My progress is blowing me a way every day!

This how cleaning a deck looked like for me for the last three years. How in 33 short steps and a couple months you can have a clean deck when you experience TBI & fatigue issues

1) Jump in and start moving deck chairs

2) Realize that you have blocked yourself into a corner.

3) Move Deck chairs again.

4) Go upstairs and lie down. Head is spinning and no muscle strength

5) Get distracted with something else

6) Forget about half moved deck furniture

7) That day to two weeks later…finally remember that you were going to clean the deck

8) Move the rest of furniture.

9) Go upstairs and lie down. Head is spinning and no muscle strength

IMG_359210) Get distracted with something else

11) Forget about all the displaced deck furniture

12) That day to two weeks later…finally remember that you were going to clean the deck

13) Look for the mop & mop bucket. They moved with us..right!?!

14) Look for floor cleaning solution. We had a big bottle somewhere

15) Arrange all outside & then go upstairs to rest

16) Go upstairs and lie down. Head is spinning and no muscle strength

17) Get distracted with something else

18) Forget about the filled mop bucket with cleaning solution

19) That day to two weeks later…finally remember that you were going to clean the deck

20) Mop half the deck into a corner

21) Re-mop myself out of a corner

22) Go upstairs and lie down. Head is spinning and no muscle strength

23) Get distracted with something else

24) Forget about all the half mopped deck

25) That day to two weeks later…finally remember that you were going to clean the deck

26) Finish mopping deck and start to move back furniture

27) Re-mop deck as there are dirty streaks from moving back furniture

28) Go upstairs and lie down. Head is spinning and no muscle strength

29) Get distracted with something else

31) Forget about putting away mop

32) That day to two weeks later…finally you remember that the dirty mop & bucket is still outside

33) Look around and think…I need to relax out here more!


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To Dream a little dream

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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:


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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!