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


1 Comment

Daith Piercings & the Migraine Hoopla

My brain doctor had mentioned getting this piercing done about two years ago. I was hesitant as piercings and often do not get along. I always was sensitive with puffy and burning ears not matter what metals I had in my ears. Plus I was skeptical about if a piercing would work to help alleviate migraine pain.

About ten weeks ago, a friend who was frustrated with getting migraines 4-5 times a week took the plunge and had Daith piercings done. BTW Daith is pronounced not like faith but instead like moth so Doth although the spelling would not suggest that. In the time that she had her piercings done, she had only one full blown migraine. She would still feel pressure but it would not progress any further.

On April 25 I went into a local Doctor’s office to have my Botox done. The nurse who put my needles in my head never worked with me before. She didn’t want to put extra needles in the places where I usually have them. I explained that my eye has never dropped before. Instead she put needles in my cheek bone…wha… and left feeling frustrated and not heard. Some people just get all huffy and in your face when you try to explain where the needles are usually placed. Crap it is my body and I am not shitting you she overrode anything I said as “That brain injured girls doesn’t know shit”. Needless to say I waited two weeks for the Botox to kick in. I felt horrible. I phoned back to the office and played telephone tag with the nurse. She left some gruff messages. I finally got a hold of her and she was not friendly but acting like I was scamming her. Meanwhile I was in bed, not eating, feeling sick to my stomach with the pain. The only time she could squeeze me in was when I was in Calgary for another appointment.  So on May 12, I could feel a storm coming in. I was laid up in bed, my right eye watering and feeling horrible. I looked online yet again at all the info about Daith piercings. There seemed to be a 50-50 chance it might work. Many pages indicated that Daith piercings used accupunctor points, but upon searching, I found that this was not true. The acupuncture points were no where near the piercing location. But then I thought about acupressure points and then my troublesome Vargas Nerve that was responsible for my slow digestion, motility, wack body temperature, swallowing and my stutter. I learned about this nerve from my speech pathologist when I was learning not to stutter. It is a very large branching nerve that basically goes all over the body and because of that is called the wandering nerve. One of the points on my head that I press down when in pain from the 24/7 migraine is apart of this nerve system. I looked up where it went and the nerve extends to where the piercing is located. 

So with that in mind, I called the place that did my friend’s piercing and they told me to come down. I drove…I shouldn’t have driven because my vision was not the best, my eye was continuously tearing, the nerve tingling was all over my face, chest and right side; the pressure was so much I though my head was going to explode and I was not really sure if my right leg would cooperate as I drove but I got there. I walked in and she took one look at me and said “you are in pain…right?” Oh yeah I was. I sat down in the chair and she got things ready.

I had the piercing done. It was super quick. I didn’t hurt when she did the one ear but the other when she put the needle from the bottom up hurt more. Nothing Like the migraine pain or 40 needle pain or labor pain. But I may not be the right person to talk about pain levels as my tolerance is a little high. I had both ears done.

Instantly the pressure in my head felt lighter and my eye stopped tearing. It was a weird feeling…there is no way I can describe it. I walked back to my car when the thunder and lightening started. I felt decent. I was skeptical there is no way this really should have worked…really there is only people’s written experience – no backed science.  Actually I am still skeptical still and now it is almost three weeks in. Is it the placebo affect or did it put pressure on the nerve…who the heck knows.

The weather is just finishing up a huge low pressure system with strong winds that they predicted an inland cyclone but winds didn’t get that strong here but where 80-90km/hr instead. This would have put me in bed the day before the storm to the day after the storm. Right now it is still windy with gusts of 50km/hr and I am still standing and functioning which is amazing. It is not to say that I never felt anything.  I felt like I was walking through gauze the first day. Yesterday and today I feel a little pain over my eyebrow at my regular point, my right forearm and shin felt like wood, there was tingling like crazy and my eye watered only a little. This is a big improvement on my ability to function.

So what can I say. I hope that my piercings heal well and my body does not reject the metal. I am still treating this as my own personal experiment. So I must thank that huffy and grumpy nurse for not listening to me as now I have another potential tool in my arsenal of migraine fighters. My expectations are different than most; I will take any relief. I also do not expect anything to ever fully get rid of my pain or make me back to normal. This is how it is. However, if there can be any tools that can help allievate or minimize the symptoms then it is a win. I am still uncertain if it is working or if it just me wanting to work, but I don’t know if I really believed it would work so I am left a little confused on the whole thing. I think I will just keep monitoring and leave it as a wait and see type of experiment.

Here hoping that you have a pain free or as little pain as possible day. Cheers to you as I put rocks in my pocket before going out side so I don’t blow away!


Leave a comment

Back on the writing bandwagon!

images-8It has been an really long time since I have written. I have not fallen off the planet, but have been challenging myself even further. Even though I love to write, there are many other things I have been focussing on such as creating art, graphics, starting a small very part time graphic design and creative life coaching business. I am unable to fit them all into my life at the moment. One day soon I will be able too! It is a goal I am working on.

My life has been changed since September to end of December. I had amazing energy, concentration and steps to move forward. I was able to attend  two craft shows and make for me a lot of goods. Christmas and the New Year were a success. I got everything done for the family, rested & played too! But then January 1st, I woke up with the worst cold ever. From January to now has been an interesting month. I have learned some takeaways about Hydrocephalus that I did not know before. Because of my new knowledge, I have finally decided to work with the Hydro instead of fight it in this case. Fighting it will only make it worse.

So What did I learn? I learned that if there is a stressor on my body like a cold or a completely blocked sinus (with a mass that potentially they think means trip to Foothills again soon) can affect the baseline of your hydrocephalus. So what does this mean.

fb_img_1443293628775My MRI showed that I had amazing flow. I love that my Dr. Sits me down and we look at the images. I love that he explains what I am seeing. He said the grey area where my hole from bottom of 3rd ventricle show cloudy grey. He said that was turbidity. I said “that is to be expected. When flow of fluid has to go from big space down a narrow tube – it speeds up – basic physics…you know my background before all this was science!:”  I almost knocked myself off my chair when this came out of my mouth. I was shocked as shit that my brain just pulled off something that I thought was long gone.  Nope just in hibernation waiting for my neural re-connection.

Distracted Side note Inserted here:

The black hole of my brain injury released some new information. Lately I have been experiencing this more and more…snippets of old knowledge and experiences pop into my head.  I wlll write a blog post of what I can compare this to in hopes that it can help fellow TBIers but their experiences into words.

images-5So my new baseline was how awesome I was doing before feeling cruddy in January. This means that until my stressors on my body…the blocked sinus thingy will continue to put negative stress on my hydrocephalus until it gets addressed. So in the mean time I will experience and increase sleepiness, tripping, falling, dropping (or accidentally throwing items), weird walking stance, numbness, tingling, head pressure, pain, and cognitive decline. I have been having a hard time figuring processes, and steps to getting things done again. Decline in remembering what to do with Adobe Illustrator again. I have been saying the wrong words for things more and more. For example for the last month I have kept telling the boys to put their laundry in the dishwasher.  

images-2You know that gets old quickly when you have two parrots who are like okay and start to put their dirty laundry in the dishwasher. My kids are jokers I say…but when I am stressed mentally with the weird symptoms that have popped up in my life, my sense of humour is greatly diminished. Actually irritability, and anger have popped their dragon heads up again so much that the boys have noticed. They joke that driving with mom is like “beepidty boop boop beeep” with the added family finger.

kitty-fingerI have been reassured that symptoms, although scary will go away once the stressor is fixed.

Let’s hope this happens quick before my control and filter completely disappears and I actually tell off a stranger who is pissing me off.

 


Leave a comment

Degradation

The term degradation is used lots in environmental field. I have used it to describe soils, bed & bank stability and creeks etc…I never thought I would use it as a descriptor of my body until about a month ago.

deg·ra·da·tion
ˌdeɡrəˈdāSH(ə)n/
noun
the condition or process of degrading or being degraded.r
“a trail of human misery and degradation”
synonyms: humiliation, shame, loss of self-respect, abasement, indignity, ignominy More
GEOLOGY
the wearing down of rock by disintegration.

I feel that my body is wearing down; I have lost good muscle; weight; feel like I have bowling balls as feet – basically dazed and confused!

After my last Brain Clinic appt where I expressed how I felt I was losing it. I had went from gaining weight to losing weight with no changes in diet. I was no longer accepting that I had to pee a million times a day. I was sick of sleeping so much as my daily resting had climbed to 5/6 hours a day. I was sick of being out of breath when climb a set of stairs and questioned how I could go from swimming 20 minutes to barely two minutes. I explained that I was starting to feel cognitively like I was before surgery – the dementia-like symptoms. I told her my dermatology appts. did not help my wrinkled dry and rashly skin. Cuts were taking months to heal. I was forgetting where things were such as my Dr. Office’s that I was going to phototherapy three times a week.

So almost three months ago, my brain dr. Upped my dose of Pristiq and then set me up with a 24 hour urinalysis and blood work. I remembered to do the tests about two weeks after my brain clinic appt. Then I forgot about the tests. After someone asked about the test results, I exclaimed “Oh yeah…I forgot to find out. I just thought everything was A-OK because I didn’t hear back.”

I swear the next day after talking with my friend I get a call when “napping” I let it go to voicemail, like every other call I when I don’t recognize the number. It took me 20 times listening to message to get the number and I still didn’t understand what I had an appt. for. The person spoke too fast and too muffled for me to understand. So I dial the number and miss what the receptionist says. After I explain that someone left me a message, she looks me up on the computer.

It turned out to be the Endocrine Clinic had me in for an appointment that I didn’t know I had. The lady explains that the office is located in the “Old Children’s Hospital” as she was about to hang up…I say “Where are you located again?” She says “Old Children’s Hospital.” I say “Where…in Medicine Hat, Calgary, Edmonton?” She thought I was from Calgary. After that was worked out I got an address to Google and then waited anxiously for five days.

Chris and I met the with the Endocrinologist and it was a good appointment. He looked at test results, my history and said that “I was a complicated case” I thought “No shit Sherlock. Hope you can help me or I may end up in the looney bin” So he looked at me skin, rashes, throat, arms, legs, feet, skin etc…but doesn’t say much.

But what he does say is hopeful. He asks us “if we have medical insurance?” Chris says “yes…why is prescription expensive?” He says for insurance to cover prescription a couple tests are needed to confirm diagnosis. He is suspecting ADH (antidiuretic hormone) and Growth Hormone irregularities. He explained that they were hormones from the pituitary gland.

The doctor explains that a nurse will call to explain the tests and to book a date. He said that the tests could be a two to three months down the road. We leave with knowledge of the test names and feeling that a solution is around the corner.

IMG_1368.JPGI didn’t expect to hear from nurse so fast nor have my tests about a month after the Endocrinology Clinic appointment. I am to have two tests done. They both can not be completed the same day. So May 31, I have my water deprivation test. I can not eat or drink anything from 8:00pm the night before and the test begins at 8:00am the next day. I know I have to keep giving pee and blood samples until I lose a percentage of weight or they get the test results they want. The nurse said the test can go usually 4pm. The second test the next day is some sort of stimulation test where they take blood tests and then shoot you up with something. I didn’t take in that part of the conversation as she said she would go over everything with me during the water deprivation test.

IMG_1370.JPG


4 Comments

Neurosurgeon says ETV a success

Last week I went and saw my neurosurgeon. I had a scan done in January of my brain. He confirmed that the ETV hole has good CSF flow and everything looked awesome. He then gave me an MMSE or mini-mental state exam.

He has administered the test three times to me. The first time I scored 24, second 6 months later 25 and 26 just last week. Basically this test is usually used to figure out cognitive impairment overtime with patients with dementia. The test does not incorporate your education level so that has to be adjusted when scoring. My neurosurgeon indicated that prior to surgery I showed signs of mild cognitive impairment…no shit Sherlock. I forgot how to read a map, where the hospital was located, how to do my job…that was scary! It was so frightening to see things slip away, but by the time my surgery, I so impaired that I showed no rational fear about surgery or risks. Since surgery I have thankfully shown progress and now considered not to have cognitive impairment in his eyes or so he lets on!
IMG_1310.JPG

The test was easier for me on some parts and challenging on others. The second time I took this test, I had trouble counting back by sevens from 100 that the doc asked if I was trying and I got all teary-eyed. This time I did better and I was impressed with myself. I also 3 out of 5 objects without prompt at end of test. With prompt, I am got one more item. I had trouble when drawing my clock. I couldn’t remember which way the hands went. I was supposed to do 1610 but think if came out like 1320 instead. I even admitted that I couldn’t remember where the hands where to go.

IMG_1308.JPG
The funny thing is that people often say that my neurogenic stutter is gone. True the brain is healing and the speech therapist tips, tricks and strategies have helped me considerably but the darn stutter reared it’s ugly head showed up again during the counting backwards part of the test. I think the stutter shows itself, not because I am nervous, or anxious but when my brain is working hard trying to get those connections firing again. I have had so many tests like the MMSE and more intense neuro psych testing, there is no reason to be nervous. I get amazed where I have improved now rather than mouthing hanging wide open…wondering what happened to me.

I admit that I have made large strides and that it is somewhat surreal for me still when I have more than one good day in a row. It is now up to two or three good days in a row (with proper resting and time management) and then I have a bad day and go “oh yeah…this shit again” This TBI/ABI recovery is like a clinger….just won’t let go no matter how hard you try to flick it.

This journey amazes and frustrates me every day. I am so grateful to advocate on behalf of myself more. I understand, interact and communicate more easily. The world that I live in is no longer like being continually drunk or on a spinning amusement park ride. I have the attention span to watch most of a movie or tv show. My memory has improved I have also learned strategies to help with organization, planning and memory. I still need to use those techniques on a daily to basis because if I let them slide, I will become anxious, freeze and not get anything done because I can’t figure out priorities or tasks to do on the fly. I become obsessed over ideas,things and projects and forget about all the other things that I need to do in my routine. I will forget the most basic things but will remember the oddest most inconsequential shit. Chris always shakes his head at me like I am a savant…then we laugh. These are just executive functions of the brain. They will also get better with time too! That’s it time…that seems to go painfully slow with my recovery but yet so fast with other parts of my life.


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

Bring TBI’ers, Elderly & students together

I realize that I am no doctor, researcher, therapist or anything in the medical field. Because of my luck, I have been exposed to quite a bit of resources in the medical and rehabilitation field that I have some insight that may help people with aphasia and brain injuries.

What got me thinking was the news story of a Dutch retirement home that give students free rent in exchange with socializing with residents.  I think that retirement homes isolate people with ageing and chronic illnesses that instead of creating a resilient environment it is an isolated and forgotten place.

When I was working as a government employee, I was so shocked to see that there was no job transition/mentoring in place, especially with highly skilled employees that were almost ready to retire. I watched talented people retire with their wealth of knowledge not passed on. A new person gets in the position and basically starts over. There is much overlap and redundancy and re-inventing the wheel. We have lost a generation or two of information transfer due to this. It is a shame! Then we are experiencing the baby boomers retire at 65 healthy, strong and going stir crazy because they are now perceived to be “worthless or old or redundant” pieces of society. That is hurtful. I am so grateful that the 2015 movie Intern was released. It is starting to mainstream the breaking down of barriers and re-starting generational information transfer.

I then also saw first hand how isolating health obstacles can be. When I was doing my speech therapy once a week and attending a small speech group another day a week I felt I was not making progress in my recovery. I went into my son’s class and read to the class…stutters, stammers and all. The kids didn’t notice at all and thought it was apart of the story being read. I felt great after that. I asked if they needed help with reading and so I spend once a week for 30-45 minutes leading a reading group with five kindergarten students. It was here where my speech, thinking improved the most. I also felt like I was apart of a community and not isolated. Even though I attended a group with 6 other aphasia people and two workers before, it was more of a health treatment type of feeling. The feeling of going to an appointment for dentist or something like that. It was not a community feel, but a medical feel to it.

I really think that bringing TBI’ers, Elderly and students together in a learning environment would benefit everyone. Even if it is students going into the retirement homes to collect stories, help with crafts, reading, exercise, board games or just socializing can be beneficial too! I even think that having a retirement home/day care would be beneficial too. Daily interaction with kids…what couldn’t get better than that. If there was mentors brought into school and used to help kids with one on one stuff or projects.

So my hope is that all of us tossed to the side people find their community and become less isolated. Being able to think, do physical activities, work on your quirks in a “normal situation” can help recovery. It helped mine. I was practicing my tactics in a real world situation instead of an office.

This type of working agreement could be beneficial to two goverment areas medical and education. There may be some cost savings in long term health care and in education with the use of volunteers.

Who knows…but I have positive thoughts that it could work.