Howdy Hydrocephalus

Understanding my unique gyroscope


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Fight or Flight

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Okay I have gotten better with dealing with stress management after my diffused brain injury. I have done counselling, I have learned many techniques such as visualization, meditation, breathing and using essential oils. This techniques did not come naturally, I had to re-create new pathways in my brain to do things. It was like telling my right leg – heel then toe when teaching my right leg not to be lazy and start walking normally again. I had to tell myself over and over again to breath in & make a big stomach then breath out through mouth.

I remember telling the doctor that normally I didn’t feel anxious unless I started to become overwhelmed with too much noise, movement or visual stimulation. However I didn’t even clue in that my anxiety was really bad until recently when I it finally it clicked that my heart pounding and racing when I would sit still or lie down was actually anxiety and the wires in my head were still criss-crossed. My body has a hard time understanding the “fight or flight” response to stress. It appears to alway be kicked in to high gear and ready to either fly or fight. So everytime I have lie down I have to let my body relax and it can take upwards of an hour or visualization, oils and structured breathing.

When coping with stress, it takes a lot of mental energy in order to recognise symptoms, create strategies to cope and remember techniques for coping. My brain injury impacts my ability to do all all at once. Often there is a delay and I don’t even realize until later. So even though I have come far, I may still be a little quirky to all you normal people out there

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I do not do well with confrontation. I am collaborator. My processing and uptake speed is slower so I can’t necesarily understand everything or gauge the situation approppriately. If I am tired, distracted, in pain, I will be distracted and not get the whole picture. I may be just in my comfortable space of smile & nod & look like I am all there…I have become a great actress over time. My speech therapist would catch me on this – the glazed over deer in headlights type of thing and say that it was rude to fake paying attention. Oh well – rude or not it is one of my coping mechanisms.

A few weeks ago I was in a room with some people who I thought were acting rude. There was name calling and other things. I didn’t say anything because my mind went blank. I just sank down and typed on my phone. I put a comment on Facebook that was an observation and didn’t include names. I didn’t even know the people’s names. I sort of regretted posting my comment until the person ambushed me outside a public building.

It started about a comment about my headband. I didn’t recognize the person and happily told the person about where I got my headband until the person told me they looked me up on Facebook (creepy) and if my comment was about him or her. I said yes it was. Then the person proceeded to ask if I was going to tell the principal. (what…we are not elementary kids). My heart raced, and I rambled on. I couldn’t stop talking. I was overwhelmed, scared and stressed out. I thought i was going to pass out. I rambled on about how it there are issues they should be brought up to staff and not left to stew.

I ended up going home and forgot to tell Chris about it for two days. When i did he got angry. I told him that my anxiety was shooting through the roof every time I opened the door to that public building. My body was acting like it didn’t belong to me – no control. I am not angry at the person. I think the person was having a bad day. There person seemed nice. I have been working on regaining control of my body wiring again. It will get there. I can not believe how wussie i feel. My physical overreaction is unnerving. I don’t like the feeling of fast pounding heart beats where you can hear your pulse in your head. God is not like I am perfect or never lose it…just ask the kids about mean mommy who yells. I tend to usually just threaten that statement and it works, but sometimes a loud voice can get you where you want to be too. Chris knows when I have done too much and I may be losing and tells me I should go lie down. It is true, I tend to lose it if I have used up all my energy and my cognitive/coping/survival skills are forgotten or threshold goes down.

So generally i try to be positive, proactive, and use my energy wisely into boosting behaviour instead of suckage behaviour.

I am trying to take a less stressful approach at life; to laugh more, frown less and treat people as I would like to be treated. I like the radiance of positive energy and try not to let negative energy drag me down. Sometimes it is so hard and at the end of the day when I have used up everything to appear/act normal it is my family who sees me struggling. i need to put them first so they do not get the short end of the energy stick. I promise to try!

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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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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.


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Two steps forward; One step back

Being a somewhat impatient person but hopeful and positive person, I was aiming for one of those recoveries without any issues; a straight line recovery without any steps or plateaus.  Last night I started to feel just off; my leg and vision felt weird.  Maybe, I had just pushed myself too hard.  Crap a lady in a walker beat me walking so I know I am not walking fast. Maybe I didn’t rest enough.  It feels like all I do is sleep and rest.  I had a cruddy sleep, very restless; some falling feelings paired with an upset stomach.  I awoke feeling  like shit.

I felt so awful that I didn’t get to see D go to his first day of preschool.  He is so easy-going that he went without a peep! Chris tried to take pictures in the classroom but instead hit my Iphone video instead and didn’t know it so there is a video of mass movement with voice but nothing of D. Chris, however, did get a good one of D walking from the car to the school with his backpack on.

During this time, I felt cold, felt nauseous and extremely tired so I was balled up on the couch sleeping.   I slept until almost 11:00am.  I then had a bit to eat – so far so good.  I want to go with Chris to pick up D so I do.  This wipes me out and when we get back to the house I sleep until 4:30.  I get up feeling okay, so I help W with his homework and get leftovers out of fridge for dinner.

I am now done once again and already in bed.  Accepting that today is not ideal is no problem and that tomorrow will be better is easy but I also must remember  that what I am experiencing could be a sudden ETV closure, but not to panic or over analysis any symptom because what I am feeling could just a viral infection due to all the kidlets being back to big petri dish (viral breeding ground) called school.   Anyways today definitely falls into the two steps forward and one step back type of day.  Grateful that this journey is teaching me so much about myself.  All is good and educational:)