Howdy Hydrocephalus

Understanding my unique gyroscope


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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.

 

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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.

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Cautiously Optimistic Round Two

images (2)Monday May 11, 2015, finally got to go see my physiatrist at Foothills. We talked about my being in pain since April 5th. We then talked about the emotional roller coaster ride that went hand in hand with the pain. She also ordered a CT scan because of the weird auditory things and head pressure that has also been happening.

She gave me a new sleep prescription to use if needed.

We talked about different alternative therapies that may or may not work for me. I liked that we talked about her research in sports and concussions. We also talked about the placebo effect. How that 30% of any treatment, drug, therapy is placebo effect. So it is hard to determine which alternative therapies would work for me. Then hubby brought up the if using medical marijuana would be an option. Because my kids where in the room, the Doc asked if we smoked via symbols. We said no. She said there are three ways smoking with a vaporizer to get rid of toxins, using a nasal mist or by pill form.

The Doc thought that Cesamet (nabilone) would be a great adjunct treatment with the Botox treatment. Cesamet is a man-made form of cannabis (also known as marijuana).

f43231246f0fb14e63a92944ab735993So I had nothing to lose. From day three on I walked around with a perma grin not because I felt high, but because I felt very little pain.It still feels surreal to be the most pain free in over 3.5 years. The pain is not gone, but it is amazingly reduced! I still get the fire ants up and down my right side of body and face, but instead of pain, it is just like little marching ants feet. I get break through pain from weather systems, over stimulation and from my eyes, but it is nothing compared to what it was. My right eye still does it’s own thing and I can feel it twitch etc but there is no ice pick or butcher knife piercing through my eyeball.  I still get the aura symptoms of weird visual patterns and wonky vision, but I don’t get the full headache pain. We had a thunderstorm warning yesterday and a small storm today. My head felt like I was wearing a helmet, heavy and constricting. I could still feel the pressure, but not the pain so much. It is quite the feeling to be a human bobble head that may explode at any moment but without the physical shooting/throbbing ice pick pain.

chronic painI feel free and light! I do not feel high. I feel very awake and alive. It is so amazing to have some of my life back. The world is not fuzzy or blurry (still can be tho) but way more in focus. The huge heavy backpack, chains, rocks of pain have been decreased to a manageable level. I had no idea how much I used the power of positive thinking, mindfulness and relaxation breathing to help with my pain. I know that I would always minimize the pain because why would you bother telling people about it too much. I mean the story gets old for me, so sure in the  hell it has gotten old for others too. I have some side effects, such as it has slowed down my digestive and motility to a near stop. This does not make you feel comfortable so I am taking steps to get it under control. I did feel a bit nauseous but hell I was feeling sick to my stomach 24/7 for the longest time so no biggie and that even went away after about ten days of treatment. The pill hasn’t cured my brain injury, but it has brought some relief to pain so I can hopefully now work on my brain quirks. My memory and awareness still needs to improve. I was towing my hubby and son behind in a dune buggy and didn’t realize until I got back to the truck that the rope had snapped and left them in the dust over a few hills back! I posted this today and somehow, it showed up for a bit then reverted back to a draft that I thought I had erased. I have no idea what button I pushed, but what was showing this evening was not what I had posted this morning. Boo Hiss…disappeared to me hitting wrong button when i tried to correct a date. I also put last years date. I honestly still thought it was 2014. OMG it is almost half way through 2015.

kelly dec 2014 359 - CopyHowever despite how squirrelly I am acting, I feel like I want to take flight and just grab life again and be a part of it. But all my family and doctors all want me to take it easy. My hubby wants me to be at least six months pain-free before I decide to do “something” That “something” I am still working on and look forward to doing eventually. Here’s a big cheer for being cautiously optimistic round two


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Re-Discovering

I have been re-discovering the joy of photographing things again with my “big gun” Canon camera. I never stopped taking pictures, but used my iphone or point & shoot rather than take out the “big gun” for anything.  It was waaaaaaay to much effort to organize myself to take the camera out…I wasn’t feeling creative, inspired, energetic or anything and that was a big change for me.  I used to have a system for editing my images for stock and I was forgetting steps and couldn’t remember how to edit nicely anymore.

It has been so much  fun getting out and shooting again.  With bringing out the “big gun” and all  it’s accessories, I am re-learning how the darn thing works again. I am also taking the time to re-learn to edit my images again.  I may begin to upload for stock again, but right now I am enjoying just playing with my images and when I am ready will need to re-learn how I did my stock editing steps.

With all this additional physical and creative energy I discovered the wall numerous times this week where I would get very tired, dizzy, sick to stomach, sore head grumpy person.  I really do know now what the brain/body disconnect is.  My brain keeps yelling at me that I am great, wonderful, perfect; and that I can do anything and everything.  My body then follows through with physical stuff until my body just decides to quit without any notice.  This lack of forewarning had me down for the count from anywhere from two days this week to a few hours of power resting.

I know that I will not be able to shoot pictures right away after my dad leaves so I am trying now.  After my dad leaves I will be focussing on getting some sort of routine that I can remember.  Iknow that I can not hole up in the room to edit pictures because the kids would run rampant and I can’t do more than one thing at once.  I can only focus on one thing so I would lose track of them.  I am also hoping the fatigue will go away with time!  Each week I get better and better.  With the help of Occupational Therapy at the hospital my memory, concentration, retention and understanding will get better and better.


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RAM needed Please

I must say that my memory has always been somewhat sketchy – always good for work but super bad for birthdays etc…. Then the sleep deprivation of having kids added to the mix so it wasn’t until probably about a 1.5 years ago I had noticed it getting worse.  Thank goodness for my iPhone.  I would use it for everything.  I would set my calendar timers, used the note feature to remember everything.  Then it got to the point where, I would forget where my phone was, not hear the alarms, forgot that I heard the alarm and start missing important work, school and family stuff.  I stopped using my phone and went to paper lists.  Paper lists for everything. This sort of worked for a bit too then  I would make a list for groceries and forget the list at home.  Then I would email myself stuff, only to forget about the emails.

I would make a list at work of projects that I needed to do and then forget about the list.  I would miss deadlines, forget about ongoing projects and even lost a client for my work.  Yes I felt bad!  At work, all I was doing was apologizing.  I was on the verge of getting fired – nothing I did was right anymore – I no longer was fast, accurate and field ready.  I was alive but not functioning mentally or physically anymore – basically a useless tit! I know that some people at work thought I was acting the way I was because I didn’t want to be there, I was dragging my feet on purpose. I had warned them for months that I needed help because something was wrong with me but no help came. I did not comprehend how badly I cheesed off some people at work until basically now two weeks after surgery.  I remember that at the beginning of August when I handed my medical note in at work and said I would finished the project I was working on.  I completed that and then left to be on leave.  After I received my ROE, I checked the website, because I knew they were doing changes and wanted to have a look, only to discover that I was no longer on the employee page.  I couldn’t understand why and I still don’t know why completely; but oh well that is life.  I had loved my job and the main owner of the company.  I loved how the company was originally built on a family feel approach rather than corporate entity.  I have no idea if I will be able to go back.  I know that at the moment if I had to go back to work I would be a disaster again.  It was membership time with CAPFT and I had to decide to renew my professional status for 2o13 work permit.  I had to decide if I be a practicing or non-practicing member. I registered as a non-practicing member for now.    I am not negative or upset or frustrated with anything that has happened, but now I see the situation from a clearer headspace.  I am accepting of where I am today and know only positive changes will happen with time.

I am no longer in a fog and physically I am getting stronger and stronger everyday.  I am working my brain by writing, and when I talk no one would know that I have some RAM and a few short connection issues.  My short-term memory has a lot to be desired at the moment – BBQ caught on fire – oops about those burgers; Fill bathtub and forget about it; kids request food/drink – oops just to name a few.  If you want to have a conversation with me, better get my full attention or you will have a one-sided conversation to yourself! Even if I have responded I probably didn’t hear you or processed what I responded to. I feel that I am way better than before the surgery, but still have a ways to go.  I know that when I look at words that I have known for a long time I question if they are spelled correctly because the word just doesn’t look right.  I used always ace the reader digest word definition quizzes and now…well…I tried.   I know that it gets worse as I get tired or when I get stressed or have too many things happening  at once.  I just need to step away and recharge when I feel a little overwhelmed.

I am looking forward to my brain schooling next week, and I know  that it will help me out.  So I will fill up my backpack just like the kidlets and head of to do a bit of ol’ book learn’n! I am opening up new doors  and allowing  for change and opportunities to come my way.

Raise a glass of fizzy water and toast to new beginnings!