Howdy Hydrocephalus

Understanding my unique gyroscope


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Water Deprivation & Glucagon Stimulation Tests

I had started this post at least three times. I had even started writing but then there was a glitch and my iPad shut down. I lost what I had written. Then I couldn’t even access what I had started. Duh…Wordpress updates created new menu layout. Crud talk about not reading what is right infront of my eyes.

So the lowdown is that for me the water deprivation test was easy peasy compared to the glucagon stimulation test. Going without food and water was not an issue. What was an issue for both test was me forgetting my sleeping pills so I was up peeing until 3 each night before I passed out from exhaustion.

I had to do the long haul water depreviation test from 7am until 4:45pm. I had to pee and give blood every hour. I was given a saline solution interveniously around 3pm because I wasn’t dehydrated enough. The weird things throughout this testing process is that my urine didn’t darken and that the amount didn’t decrease. So what did I do all day? Sleep mostly, my vision was acting a little wonky so I really couldn’t read. I played unblock me and look at my pictures maybe for ten minutes each hour. The lights in the room were out for most of the day becausee my head hurt like hell. Chris came for 4:30pm with two smoothies that I had to wait to drink until my last pee and blood sample time. Then I drank  quickly and had to wait to see if I had some sort of reaction. I then had my final blood pressure test 113/75 and was sprung for the night. 

The next day was awesome. I arrived before nine and led to a nice warm room with two unique reclining cushy chairs. I was given warm blankets and heating pads. It was like being at the spa. Then I was set up again to be able to draw blood again. This time it went really quick because we used heating pads to warm up my arms so my wobbly evasive veins cooperated. I felt that this was going to be an easy test like yesterday. I was injected with Glucagon. The nurse warned it would hurt or burn. No didn’t feel that and was positive that all was going well. I dozed off. I felt my arm getting eaves and then of course about  an hour after the injection I had to go pee. In the bathroom I felt a little off. When I got back the nurse took more blood and commented that I didn’t drink that much water. I told her I drink much because I didn’t want to be sick to my stomach.  Then it was like a switch, I felt really sick to my stomach. Chris grabbed a garbage can and the nurse came running with one of those tiny paper containers. Thank goodness there wasn’t much to come up.Then I broke out in a sweat and I got dizzy and really hot. We had to get all the blankets off and my hoodie off with keeping IV in. Then I felt like I had to got the the bathroom. The nurse and Chris tried to stand me up but I couldn’t stand. The stomach cramping started and I started to shiver. The bathroom was not a priority anymore. I curled up in a ball and was covered in blankets again then I passed out. All these sick things didn’t happen over a period of time but instead minutes. I felt like I was hit with a bad stomach flu or food poisoning. 

When I woke up I felt better but tired. The test was almost over so I guess I was out for a couple hours. Then the last blood draw down and was allowed to eat. I ate  what we brought two Apple juices. I really had to go the bathroom but before I could stand I had to get my blood pressure taken again. It was down to 90/50 so I was not allowed to stand. I was offered a bedpan that I declined. So I waited and continued to eat more food. After I ate two packs of cookies my blood pressure was taken again. It had risen enough hat the nurse let me stand but accompanied me to the washroom. I started to get the shakes. When we got back to the room I had to stay a bit more then had my blood pressure again. When she took it again my blood pressure had risen to 110/70 and I was able to leave. Chris had parked down the street and it took a bit of slow walking to get there then we went to a nearby baker to get treats and went back to Medicine Hat.

My stomach felt sore and I had even less of an appetite for almost two weeks after. I couldn’t even stand the smell of meat.  I have not received my test results. One of the tests had to be sent to the Mayo clinic in the US because there is no labe in Canada that does the testing. 

In the meantime my brain injury Doctor prescribed me a short term/acting energy prescription that has been working.  I had the best birthday in four years. I have been on it for two weeks and this morning I needed. A body rest day so I didn’t take any pills.

Here is to hopefully long term positive solutions!


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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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Duckface & SJS

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Last Sunday morning I woke up with a duckface. My neck, face and lips were swollen, especially my lips. I had begun to taper on my prednisone, but apparently my body didn’t like that. I went to emergency and found out that my SJS (Stevens-Johnson Syndrome) was flaring.

I found out that I could wax & wane flaring symptoms for a long time. I not only had swelling, but my face started to get the blister rash again. Inside my mouth and tongue had blisters too. My hair is falling out in clumps & feels like dry horrid straw. I may have to get my hair cut short. Will not make any decisions like that just yet. I have not had really short hair since I was 22.

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These flair ups are nothing like before, but still a pain in the rearend.

Nothing like a good health scare to really put things back into perspective again. I had been tossing about what I want to be when “I get better” for the last year. Wasting healing energy and time fretting. I tossed retraining to be a teacher, art therapist, or reflexologist. I guess I thought re-educating would make my worth. I decided that baby steps are a wonderful thing and I will focus on hand reflexology and essential oils. I feel comfortable and happy with this decision.

The thought of post secondary training makes me stressed and anxious. Especially when I have trouble spelling words and I can’t even remember how to cite references. I think it would put too much pressure on me and my health would crap out again. I do not want this to happen again. I want to be healthy, strong and happy. I want the same for Chris and the boys. I spend time with my family and have life adventures rather than book adventures. There is so much on my bucket list and I plan to be a part of this world for a long time to come. Being happy is number One! It no longer professional title or the dollars one makes.

I need to take the time to get my energy back. I am still fighting with acceptance that I need two naps a day to look like I am a together person when people see me. I just need to build a bridge and get over it and accept that this may be the way it is for a while. And if I push too hard, I will begin to back paddle. I don’t want to back paddle anymore.

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Stevens-Johnson Syndrome

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Stevens-Johnson Syndrome or SJS for short is a rare skin condition that affects the skin. It causes skin to turn red or purple and peel away from the body. It also affects the mucus membraines or moist skin in mouth, nose, eyes includiing other body parts. SJS can be caused by viral infections, some cancers, geneitics and between 100-200 different types of medicine. Wikipedia indicates that there are anywhere between “2.6 to 6.1 cases per million people per year. In United States there are about 300new diagnoses per year”.

SJS can quickly become worse and become toxic epidermal necrolysis or TEN. The amount of body surface and severity is a way to classify between the two disorders. Where 3-10% of coverge of blisters of lesions on body is classified as SJS. 11-30% is considered SJS/TENS overlap and more than 10% is considered TENS. The mortality rate goes up exponentially too with more body covereage.

This is my story with SJS.
August 5, 2014. Go to family physician & begin to tirate up on lamotragine. keep lyrica the same

August 22 energy improved. clear headed. camping – feel weak. have drenching night sweats. shake it off as withdrawal from dosing down all the way off lyrica

august 26 up to maintenance dose of lamotratine. still have sweats

august 29-31 feel like have stomach flu. can’t eat. feel sick to stomach. face breaks out in rash.

sept 2 blisters on left hand and ring finger. rash has gotten worse, face, neck upper back. can’t wear wedding ring. left lymph node in neck bulging and very sore.

sept 4th go to walk in rash on arms & legs & stomach. get urine and blood tests. doc says most likely mono but extreme they may need to do biopsy on lymph node no energy. My right side started sagging more and drool would just come down my face.

sept 5th. never had cold sore and only small canker sores. mouth big blisters inside. lips and neck and face begin to swell. barely can walk. skin turned red. Even softest cloth are burning painful. No tags, light weight cotton tank top (no bra) & yoga shorts.

sept 6th morning bottom and upper lips fused together and completely bloody & raw. diffuse with warm water. mouth is covered in white stuff (later dead skin). barely can open mouth. face and neck ballooned. Rub my arms and legs and my skin would peel off like a sun burn. Hot burning pain. Itchy. Eyes starting to get red & gloopy. Hair is falling out on my head. I can barely keep awake. chris comes home late from work & tells me to go to ER because it looks like I have been in a car accident. I have seen myself all day and am in denial. I phone health link they tell me to go to ER within 4 hours. I have trouble swallowing.

I go to Emerg around 8:00pm. Not busy but still 3.5 hours to be seen, two sprains where seen before me. Wait in the non-emergency cubicle and debate whether I need to just go home. I finally see a Doc who asks me questions, takes a look at my meds & then leaves for 5 minutes and comes back to then say he is admitting me for SJS. by 12:30 i have a bed in the ER and I start prednisone & bennadryl. At 3:45am a room opens up and I am taken upstairs.

The next day the doctor who is my on floor physician was the one who saw me at walk in. He asks me tons of questions to what seems like to deny the ER diagnosis because he didn’t catch it. Did I eat anything, wash with anything new. Exposed to stuff. The questions were ridiculous. He asks me if I left a tampon in and if I have toxic shock. i said no. He then goes can you be sure. So all humilty left at the door, we do a vag exam there. No nothing left. I am not feeling confident with this Doc as he left me in extreme pain and it waned even further when Chris talked with him.

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I am so grateful for the ER doc and catching it. He is my hero! He took his time, listened to me, looked at all the visual symptoms and did some quick research. The information that the nurses gave me was really scary and the mortality from SJS goes up quickly. I know that I was a totally anomoly in the ward. So many of the nurses had said that they had never seen a patient with SJS. When I had a big flare up, I was scared they didn’t have a handle on this and I was going to die.

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Stayed in Hospital 6 days. On IV continuously for all but a test 8 hours where I flared up big time so they put me back on IV. I was given IV for fluids & nutrition, Benadryl to help with itching, prednisone to take away swelling and inflammation. I took pain meds & metonia by mouth. It would take me 5 minutes to try to use a straw to suck up 1 tsp of water. My mouth was raw & swollen. I could barely open my mouth & couldn’t stick out my tongue. At night I felt that I was choking on my own blood & didn’t sleep for long periods of time and on an angle. My eyes were itchy & sore and I was given drops so my eyes wouldn’t stick together and I wouldn’t become blind. I was given a grainy steroid cream for my lips that was like sandpaper but in gel format.

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My lips had to have muko gel on them constantly & they would peel off in chunks. I was given an antiseptic mouth rinse & foam tooth brush to basically put myself through pure torture four times a day or searing pain, blood, skin and pus.. Finally I was given another type of mouth rinse that numbs rather than makes you cry.

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I didn’t realize how badly my breathing was obstructed until day 5 when I could actually breath easily. My skin would peel off my forehead. People would look at you with this kind of scared to respond type of look. They were horrified but still couldn’t look away. When I had my brain surgery the kids spent time with me. This time in the hospital there were there only once. You could tell they were scared to look or come sit with me on the bed. I could barely talk. I would drool out my right side.

I could not eat, barely drink so I was on 5 days of a liquid only diet. Then a day of soft. I am a week out of hospital and ate pizza tonight.

When the swelling started to subside and pain pills working, I would joke with the nursing staff that now I was not in the hospital but in a very expensive spa on a detox diet, having plenty of rest & daily chemical peels. Nothing but the best for me.

I have been home from hospital a week and I am starting to get energy & eat. I am still having small flares inside & outside mouth and chest. I still get the heebie geebies when I think of everything but a freak thing like this will not get me down.

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 It is no fun to be on the sidelines just lying in bed. Not even sleeping – just breathing and visualizing to make it through the pain. My current operating system does not run smoothly but goes in waves of energy. Sometimes I do stuff until I drop from exhaustion because I am trying not to focus on the pain.  Then I collapse on the bed and my right eye tears and right side of body then shuts off.  I can feel it – first the face then down and below the elbow and then leg.  I have to try with all my might to lift my arm.  It feels like it is paralyzed.  After an hour or two or three or or four, I am able to move again without concentrating.  I am dazed, confused, dehydrated, dizzy but up and ready to be apart of life again.  I think my weird stop, drop and roll into bed behaviour is like or really is a hemiplegic migraine. I know that they have tagged me as having a chronic daily migraine with ice pick clusters. I am not a chronic migrainer from overuse of over the counter pain meds, but instead from over excitement of neural pathways that have not calmed down after surgery.

I try to keep a headache diary but it gets old from putting down the same information daily.  Usually the pain or body shutdown hits around the same time everyday. 

I feel like superwoman on the rare day that I have not pain.  Then I go crazy and of course overdo it.  I really have to watch for dehydration.  I avoid chocolate, red wine, moldy cheese and most of the food triggers except caffeine (cappuccino is my treat)I try to be prepared for loud noises or prolonged loud noises with ear plugs (if if remember them) or I take the energy hit and sacrifice some up time at home. I try to watch for bright lights or those nasty fluorescent lights by wearing tinted glasses until you of course break both pairs by kneeling on them. I try to use ice or let cold air hit my face – it doesn’t stop the pain but lessens it.

Most days this is how I feel. A mixed media piece I created as part of my personal art therapy journey.Self Portrait Mixed Media
and this is my view. An iPhone pick of how I seem to be there but not really exist.
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The doctors and I have tried all sorts of different meds. In February, the decision was made to try Botox as a way to desensitize my overactive neurons. It took a several months to get extended health approval as this is an expensive procedure. So on April 24, 2014 I was injected with 31 needles. When being injected, there is pain, my right forehead felt a little uncomfortable, but it has less feeling than the left anyway. When she injected the left side it felt like “holy shit burning acid being injected” I have no idea why people just like their wrinkles rather than put up with that pain. I was injected in my temples, various other places on head, neck and upper shoulders. The injection time took about 15 minutes or less (felt more) and I can still see injection sites on my forehead. Mostly it was quick and didn’t have too much pain. I just was not expecting to feel the Botox to be felt going in – No one warns you about this. However, this $1000 procedure is worth every penny if it works and I am not sidelined from life too much.

I didn’t notice anything significant right away. My head felt like lead and I can’t really raise my eyebrows at all. However after two weeks, there is some positive results. My pain is still there but dulled and I have had some sidelining attacks but I am currently writing on the computer without tinted lenses. My Neurologist says that we have to give this type of treatment at least three tries and then evaluate it’s success. So far I am positive and fingers crossed that we re-route the over active brain activity to a more important part like my right side of my body.

Here’s to being positive and changing my views on a the use of a beauty product for my brain. Oh how High maintenance I am (LOL)


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All I want for christmas

In the dining lounge this morning, there is the television blaring with news of more funerals for the kids and adults who were shot down last week. No one here really has paid attention to what has happened. There have been a few discussions about gun control but most, I think, like myself know that it has happened, but are currently being greedy and focussing on ourselves and on getting better.

Two of my table mates who both have had strokes begin to talk about what they want for christmas from Santa. It is funny because the one person begins by saying “All I want for christmas is my left arm again” The person next to him says the same thing. Both have seen improvement in the arms in a week so they are hoping by Christmas they will have their arms back. This is the place where you can see amazing improvement in people in short amounts of time. It blows my mind! I am in awe of all the people who are re-learning way more than what I have to re-learn. The people in here are the true warriors. They have so many things to re-learn that they use to do unconsciously, but now have to make conscious efforts until they each step becomes unconscious again.

The breakfast conversation made my morning because I was still wiped from three hours of neuro psychological testing yesterday. I slept after the test, got up for dinner, then watched a bit of a movie then slept all night. Today both my eyes are giving me grief – fuzzy vision (not just my right eye); I feel still tired and have a monster of a headache. Moral of the story is that when I think too hard or do too much physical I get slammed preety bad.

At least my CT scan from yesterday showed my ventricles have shrunk back down a bit which is good! That I am just experiencing a bit of chronic pain from my head. I hate the word chronic pain; people think you are a faker when that word is used.

It is awesome that I am learning about what my brain has disconnected for my speech. Apparently, my muscles in my lips need to be re-taught how to work and release. So words that begin with W, F, V, B etc. I have been hitting too hard and my lips get tense so I stutter or hit the letter too hard. I have been learning how to breath the speak and now I am learning how to soften the words. It is amazing to see and hear it work. I know that Wy noticed the way I was saying his name, but not too many other people. It probably always sound like I was angry at him, but now I am working on saying Wy’s name properly! I am learning new stuff everyday. It is just being able to remember and coorinate it all so the techniques will work.

So what do I want for Christmas…is that everyone stay safe and healthy so they do not have to visit this place too!


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Foothills Diverted

I am happy that I didn’t have to make another trip to Foothills Hospital early this morning.  Two days ago, I had flu-like symptoms that can mimic a complication.  I was re-assured the next day when my youngest was experiencing the same thing.  Don’t get me wrong, I never wish sickness on anyone, but it was it did make me feel better knowing that I wasn’t experiencing a complication. That was until last night around 9:30pm, when I felt that I was in an elevator falling quickly and I was sitting on the couch watching trashy TV.

I got up and keeping my balance was like being on a pirate ship during a storm, so it was not easy.  I went to the bathroom to brush my teeth and kept dropping everything I was trying to pick up.  I am trying not to panic – I just want to go to bed and sleep.  Two hours later we are in emergency.  My body has not settled down.  My head feels like it is being held up on a toothpick & my world is not spinning, but is very unstable.  I keep losing balance to the right.  Emergency appears to be fairly quiet and I still wait for an hour before the emerg doc to see me.  this is what I look like.  I had Chris take a picture because I couldn’t keep my eyes open, couldn’t concentrate and my blood pressure which is normally around 109/70 was as high as 158/90 (damn BP monitor hurt every time it too my pressure).

Feeling like I could just go out and party

The Doc is the one who in a previous visit shoved something so hard up my nose it made it bleed and told me that there was nothing wrong with me.  That it was sinuses and should not be in emergency but to see my GP instead.  I was there after having a major pain, pressure to my head and clear fluid come from my nose. Nice now I know why I waited an hour, the dude doesn’t want to see me.  So he is all like “I know you…you have congenital hydrocephalus…did you know all your life…etc….”  Chris is ready to pummel him.  Chris explains everything.  I did say that “he did see me and not treat me very well”.

We have to rule out the big things: brain infection, meningitis, brain bleed, potential of ETV closure or partial closure.  So I get blood drawn, Have another CT scan (an added 146 days of radiation to my body).  So I am clear of the two.  The doc doesn’t really know about the ETV stuff.  He comes in and admits that five doctors had all the information in front of them and didn’t put the puzzle pieces together.  The doc is all apologetic and nervous now – fucker!     I am given Tylenol and some anti-puking medicine.  After about an hour, my world is no longer falling like an elevator or being on a ship on rough seas, but I am a little unstable.

There is no info on the system about what to do if I am experiencing symptoms.  Chris says that I am supposed be transported to Foothills hospital, but I am not too sure if I should go.  We agree to go home and call the Hydrocephalus clinic.  If I am experiencing a partial closure, it is not harm me right away; I am still getting flow.  The doc looked at my eyes and saw pulsating veins.  So we call the clinic the next day and the doc there thinks it could just be my body acting weird because of getting used to having CSF flowing and having fighting a virus may have thrown my machine for a loop.  But he said to continue to monitor.  If symptoms get worse then drive to Foothills.  As much as I like the amazing nurses, doctors and quality of care at Foothills, I do not want to make a second appearance there.

Today has been a bed day…I hate daytime TV…it sucks!  I need to go find my crafty crap –  if only I have the energy to go downstairs to get it…can you say stir crazy.