Howdy Hydrocephalus

Understanding my unique gyroscope

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A Good Day

Found a fellow blogger & Stevens-Johnson Syndrome survivor. Check out her blog!


teachingpicSo often when you have a chronic disorder, especially a painful or debilitating one, it can be difficult to talk about the good days. That seems counterintuitive, right? Shouldn’t we want to talk about the good days more than the bad?

Of course we do! Thinking of the good days is what gets us through the bad ones. And yet, so many times when I’m writing on this blog, posting on Facebook, sharing on Twitter – I find myself posting far more frequently when I’m frustrated or hurting. Certainly those are times when I need support – of course! And I have to admit that posting when I need support has made a tremendous difference in my recovery time and overall attitude. Yet I also find that posting when I’m happy – on the good days – is just as important!

So here today, just for all of you, I…

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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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Impulsive non decision making type of thing

kelly dec 2014 258I used to be a very strong minded person. I could hold by my beliefs, convictions when a person would try to convince me to purchase something. I would always do research for months on end before buying something important. I used to love Consumer’s Report and looking all the reviews online for things…especially camera equipment. This used to drive my husband batty as it took me nine months to figure out what Camera body I wanted to buy and many more months after that for the lenses. One thing that has noticeably changed with me is that I am extremely gullible. I can be convinced about things more easily. This makes my normal adventurous spirit to try new things almost manic.

My impulsive button is stuck on full-on especially when feel pressure from other people. I have no idea why, how, what, when or who I have become in this manner. I usually prepare when I go into a store with a list. But lately I haven’t. I go into a store and with all the rows and rows of stuff my mind goes blank. I have no idea what I am there for so I wander around hoping things will pop into my head and I will remember what I needed. I wander up and down the same aisle numerous times trying to read and decipher what everything is. I often read things wrong, prices wrong etc…. I impulsively pick things up and put in basket. I then walk further down the aisle and take the item out of basket and place on shelf. I do this over and over again. I have security follow me around the store before numerous times; especially Walmart as they are not that stealth. It took me two hours to pick out a birthday gift for a little girl and a baby shower gift for another little girl. Girl stuff is totally not my territory. I have no idea. But the funny thing is that numerous hours after home and napped from that adventure I finally figured out why I actually went into the store anyway…those styrofoam mailing noodles and potting soil.  Mmmm didn’t get those and it has been two weeks and I still haven’t picked them up either!

My impulsiveness runs in another direction where I attribute it to trying to re-establish my identity. Much to my husband saying that he knows that I wouldn’t like reflexology I was hell bent on thinking that I would. Nope not really…I found out that deep down I still don’t really touching people and that I have a quick gag reflux with smells, textures and stuff. But I am glad I learned as I love doing foot reflexology on my boys. I think it gives us time to bond. I have also found out that I am an essential oils educator not a sales person. I love natural healing components of plants, shrubs and trees. Reminds me of when I worked in the environmental field. I just do not like sales at all. Deep down I am like I was before never working to make a buck but to try and make a difference instead.

imagesMy impulsiveness also feeds my lack of ability to keep a routine and attentive on any one thing. This is very apparent to my husband some days when he comes home and finds five loads of clean laundry on the bed not folded; half the kids drawers pulled out sorting out small clothes; partial boxes unpacked downstairs; left out paints; half unloaded dishwasher; half dinner started etc…. This in turn feeds my lack of decision making which is another story into itself.

So basically I am a walking tornado at the moment trying to make sense of myself. Hope that I will be able to find an identity of who I am and who I want to be soon before I frustrate the bejeazus out of everyone; myself included. Being this way leads to frustration, confusion, anxiety and depression. Not to mention of feeling not normal and as a failure to boot. I wish I would get better soon as I do not like where I am at the moment.

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Lost in Time

IMG_3058I have been preparing art for adjudication for an upcoming Art Club show at the Esplanade. I am using my self-portrait after brain surgery that I made last year. I also made three other pieces two other mixed media and one woodblock print. I barely made the deadline Saturday. I am proud that I was able to get them in.

So how does a person with a brain injury get some art done. Well I obsessed and thought about what I was going to do for months. I am not writing about just thinking of what I would like to do, but it consumed my thoughts. Then once I figured out what I was going to do, I became distracted with other things that I do not remember but one was our moving houses. An email reminded me about the show, so I went about gathering the equipment, hardy board, Styrofoam head, magazines, paper shredder, and rope. I was on a feverent roll of action so I tried to use Vaseline on the Styrofoam head and paper mache in hopes that I would be able to use the head as a mold and remove the paper mache from the head once dry. Once I paper mache the head, I was distracted by other things. A few weeks or so (could be months) I came back to the head to try to remove the paper mache to have a hollow head. Well that didn’t quite work at all. I was forced to re-visit the head.

So one Sunday morning in the kitchen, I took a butcher knife to the styrofoam head and carved it in half. My son was on the couch with his mouth hanging open thinking that I had probably lost my marbles (still debatable). I hadn’t really thought the process through. Dull knife and it took a while and made a big electro-static mess. After energy used I was once again distracted.

I then forgot about the art project again because I had to make donations for school fundraisers. Thanks to the club’s secretary, another email reminded that I had a month to left to deadline for handing in pieces of work. I think that I have plenty of time to do it all. So prepped the board and got stuck. It was this 24″x48″ piece of white board. So I went to the computer and looked up photo transfers (I forgot how to do it). I deviated from the art project and made a sign. I went on computer and made some word art templates. I then phototransfered nine to one side. The next day and for a few days after I worked on removing the background. I became distracted and started my woodblock carving.

IMG_3049I grabbed half a head, some found objects, rope. I went to work with a screwdriver and punch putting holed in the head. Then then threaded the head with rope. I really hadn’t thought this part through. It wasn’t part of my master plan, but I ran with it. And then it sat again. For the last month of this project, my Botox has worn off, I am in pain. I can only work on this for sometimes as little as a few minutes and as much as a hour. Each time after I work, my head is spiking in pain and I need to go lie down because I feel absolutely wiped. Not from physical energy, but mental energy spent. Time suckage of just staring at what I am doing and trying different things is huge. I can’t make up my mind. That is the one thing where I continually get lost in time is my lack of decision making.

IMG_3142My two other pieces I know are going to be trees. I have half carved out my woodblock. The final piece is still stuck. I start with a board and end up getting a canvas. The final week in the house it is chaos. I work on art, sleep, nap, work on art, scatter art prints everywhere. The garage, downstairs and dining room table have been taken over. Laundry is piled high in the bedroom. Toys are everywhere. We eat left overs or what ever is in the fridge. Thank goodness our student went away as there was really no scheduled meal & kind of fend for yourself atmosphere. My head is spinning, my chest hurts. I am depressed. I am an emotional, physical and mental wreck that is sinking down a deep rabbit hole. I keep printing and burnishing my tree but each print is crooked. Then the ink is still wet after 48 hours. The only salvagable I have ruined trying to straighten for the frame. I become obsessive-compulsive in trying to get a straight tree print. It consumes me Thursday and Friday.  My hubby has a hockey tournament and my Saturday (the due day) is over scheduled. I am able to drop two pieces off on Friday and by Saturday afternoon the other two go in as well. What a relief. I am hollow and exhausted. My vision has a hard time focusing. I go to bed the same as the boys and sleep through the night with the help of a sleeping pill.

Art has been therapeutic for me. This has been a successful learning experience. I do not respond well to deadlines. I have to work at my own pace however forgetful, inconsistent and irradic it may be. At least for now as there is plenty of room for me to become more flexible (one of my weakest executive functions). I hope to go back to school and become an art therapist as I have seen the benefits for me and know that I would be able to help others in the healing process as well.