Howdy Hydrocephalus

Understanding my unique gyroscope


Leave a comment

Growth

At the end of 2011 and through 2012 until I was diagnosed with Hydrocephalus was heartbreaking, confusing, as I lost my facilties with reversible dementia, my body strength with my right side going numb, fluid coming out my ears at night and nose during TKD and running. The initial lack of support from people due to the fact that everyone thought it was just a mid life crisis or was faking with my right arm not working properly and right leg dragging; fatigue; memory isues and neurgentic stutter.

After diagnosis there was relief that I was not losing my mind. I look back now and there was a cognitive break in awareness and understanding the severity of my brain and body. I had no fear of surgery and was hell bent on getting out of neuro icu and home that I was the wandering patient. Determined to pass all test to go home.

Then there was optimism of recovery at the Brain Injury Clinic. Being told not to drive….pshhh…whatever. I drove until my Brain Dr. called to let me know there was space for inpatient in Foothills. She gave me crap for driving. I thought she was crazy…I could drive no problem. I only had energy to go up and down the hill to drop my kids off at school anyway…my new visual world was almost like a surrealist painting, swirling, motion and blurs in a constant movement on hyper drive volume.

Inpatient was amazing. I recieve physical, recreational, cognitive, speech and life skill re-training.  Had to re-wire the zombie. I was alive but my ability to communicate was limited. There I found out that I had minimal Affect…thus no driving…if my Dr. had only explained that.

During the first three years, My hubby and I were in denial that there would be a full recovery. It through both of us for a loop as we slowly realized that no not a full recovery to the old me but a continual recovery for the new me. Let me tell you…yes there is a fulll on grieving process for this. You question your being…burden…useful/useless…where do you go when your entire being has been smushed in that damn brain. Well you can roll over and say fuck it – off yourself…drink…smoke meth or other drugs…run away and become invisible or try to pull up your big girl pants while saying suck it up sunshine and move on.

The moving on process is the most frigging frustrating. It is not like you will just get healthy, come to a finish line and say Hey I am done with a pat on the back and participation ribbon. Hell no. This is uncharted territory and you better be in it for the long haul. There are many hill climbs…some are easy….some you are stuck on a ledge for a long time…there are rockslides and tumbles down to the bottom…only to start over again. Then there is success you reach the peak, plant your flag only to look forward to see endless more mountain peaks. So you decided do I go back down and start the new climb or stay put and be happy/angry/miserable/positive/content/pissed…the choice yours to make.

I have learned to keep going even when hanging on by a thread, dead dog tired and feeling alone. Sometimes is for me, somtimes it is my pure red-headed viking stubborness, sometimes it is my family, sometimes it is for friends, but I stumble forward, backward, upside down, or sideways but I move and often it clicks together. The recovery process is not a straight line….it is a wacked out angry scribble drawing that doesn’t make sense at the time but when you pull it out later you see what makes sense in it.

I have found a new me. I am not completely new, there is some old me still mixed in with my wacky and wild new me. Most days I embrace and accept my quirks…hell there is no on this earth like me. I have found new meaning, direction, tribe and currently working on building my community.

I have been giving an opportunity run a volunteer peer art expressions group. We had our first meeting last Wednesday. I am enjoying the creative sharing and strategy sharing for all your challenges we have been faced with. I think with our digital age, we tend to minimize sharing and connecting and supporting a people who are needing help. Often people put the blinders on and ignore the fact that we are broken crayons but we all can still colour. This happens so much for work. Company’s mostly hire full time. I will never be able to do that. I think my energy levels and my time requirements to keep my body working will allow me only minimum part time at the most.  I am super excited to share my experiences and hope to bring  support to others who are at different stages of their chaotic life changing journey. So my Community growth so far for this year is being involved with this. I am so grateful For Medicine Hat Alberta Health Recreation Services for coming up with the idea and allowing me to participate.

I have gained strength mentally and spiritually. My physical side of me was still lacking. Since December 2017, I made it a priority to get my physical me into alignment. It has been a challenge for me not to push too hard. I still had days where I thought I could be like who I used to be and had to recover, but not as many as previous attempts. So my big growth and accomplishment physically so far in 2018 is me running the 3km Rattler Run. It was the 2012 3k where I came 3rd when my entire right-crapped out and went lazy, funky and irradict because of the pressure in my brain. Not a stroke, but pressure related damage That I have worked hard to minimze. If I don’t do my rehab exercises my brain will get lazy and then my arm and leg gets lazy again. Now it really only comes out when overwhelmed or overtired.

RR_logo_facebook

The Rattler Run theme this is year is so appropriate. I am running for me! Whether you are on a health journey too or just an average joe happy, sad, going through other chaotic life events….I challenge you all to challenge yourselves. Let me know what you are doing.

Cheers,

Kelly

 

Advertisements


Leave a comment

Oh Sleep how I missed You!

For over the  last five years I have suffered from inadequate sleep from my crazy re-wired brain. Sleep is one of the most important activities to allow your brain to heal itselt. That is why patients are given sleeping pills in early part of the healing process.

After that you given suggestions to help with proper sleep hygiene.

This often include:

  1. Limit naps to 20-30 minutes. This makes sense on paper…however when you are fatigued and sleep-deprived you nap. When you dealing with a life long chronic condition and need to use the spoon theory to survive and educate people you nap. I really don’t think the regular doctors understand. Limiting naps may work for the “normal” person who is going through a small patch of insomnia but for us Spooners naps are the bridge to help us make it through the day.
  2. Limit caffeine consumption. I love coffee and I still have my coffee everyday. Coffee has often held off migraines for a short period of time for me so there are benefits to still drink it. The only thing where I limit my coffee consumption  But I do not have coffee past noon. I do not like decaffeinated coffee and often caffeine free tea gets a bad rap. However, I found a few teas that I just love. These teas taste hot or cold and you do not need to sweeten with sugar. My current favourites are Celestial Seasonings Bengal Spice , Celestial Seasonings Ginger & Turmeric Tea and Tetley Blueberry Ginsing tea. I tend to like the spices that make me feel warm and cozy.
  3. Exercise daily. This is a very hard one to do when given a new life with a chronic condition. Prior to surgery I was very active – runner, Tai-kwon-do and I worked outside so I was fit and had lots of muscle. After surgery I wanted to exercise to my previous level. It basically took me up until recently to understand it is not the amount or intensity that matters. I can exercise for as little as ten minutes. I love how I feel! I use a wooden balance board to help with my right side and core. I also use the yoga half ball with handles. I started with resistance bands without handles but now prefer resistance bands with handles. I also walk not run!
  4. Get enough sunlight and darkness. This supposedly gets the sleep-wake cycle back to normal again. I live in Canada and the weather can get horrible in the winter so I use a Light Therapy panel. This is blue light which gives me headaches but I wear tinted prescription glasses all the time to alleviate. I also take higher than average doses of Vitamin D as prescribed by my Doctor. If it summer one fun way to baseline your sleep-wake cycle is to go tenting for three days with no electronics.
  5. Don’t Eat or Drink too much before bed. Avoid the foods that cause you upset stomachs or build acid. Too much fluid may cause you to get up numerous times a night disrupting a good night’s sleep. This is a very personal thing and experimentation is needed.
  6. Relax before Bed. This means different things to different people. Some people chill in front of the TV while others read. Some do Yoga or Meditate. I often read and listen to diurnal Beats or Meditative Music from Amazon Music. We have been Amazon Prime members for years and love it. Try Prime Membership  Amazon Music, Video and Photo are some of the benefits. not to mention the awesome shipping times. This saves so much time and energy.
  7. Create a Good Sleep Environment. When I first heard of this, I was thinking WTF. Well we don’t have a TV in our room. My hubby watches his shows with headphones via his tablet. I spent almost two years trying to find a pair of wireless headphones that would work for me. I found a great pair of reasonably priced wireless noise cancelling over the ear headphones that fold with comfy foam and fit my head in all the right places. I don’t watch TV on my tablet, but I do read online books and listen to diurnal beats to relax and fall asleep. The biggest thing that I love is my how my Apple Ipad has a night mode so I am able to read without all the blue light. I also love how I can turn down the brightness and also change my books writing to grey. No one can see my screen at night except me it is so low and with a muted amber glow. I am so sensitive to light that having all these features allows me to comfortably read and relax. Setting the room temperature for proper sleep is very culture and personal dominant. However the bestest Christmas Gift ever was from my hubby. I had read about the benefits of weighted blankets. He bought me a single sized 15lb blanket from YnM and I have been sleeping throughout the night. It was a Christmas Miracle.

I have been sleeping like a baby since December 25. Except when I didn’t bring my new favourite blanket to Coleman for five days. Next time I will haul it with me. I have been extremely grateful and appreciative to have sleep back in my life.

It has made me think clearer and be more productive…okay I am still a squirrelly mess but I feel like I am being more productive as I try to stay focussed.

So I am very grateful to a wonderful start to 2018. I can see so many positive changes happening especially with having a solid night’s sleep!

Disclaimer: The blog is a documentation of my life living with Hydrocephalus and Brain Injury.  It is not professional advice but tools and techniques that have worked for me via trial and error under the guidance of my medical team. Everyone is different and what works for one person may not work for another. Consult your medical team. The links above contain affiliate links. This means that at no additional cost to you; I will earn a commission if you click-through and make a purchase.


Leave a comment

2017 is Ending Thank God!

dec2017feeling

I knew that I hadn’t blogged in a bit, but wow three months. This year has been a complete lack of writing therapy. Maybe that is why at the end of 2017 I feel so disconnected, blah and like I am a trainwreck going steadily downhill without any brakes and picking up speed with no end in site. It is not a good feeling.

I try so hard to get things done. Great business idea, get stuck, can’t connect the dots. Ask for help and then the REDI people are not computer knowledgeable. Feel like I am left standing in the dark trying to do this by myself so I give up. Don’t get a phone call or text for a month. When I do…I am feeling frustrated, angry and directionless. Yes I need help but why should I ask…when I will be told that no one has the skills to help me there. I get confused when they ask what i need help with and my goals, direction. We had a list of stuff of helping me connect the dots, figure out priorities and all that stuff. Then they left me to work independently…well that worked like shite. Where can I go? What can I do? I don’t have a clue and do I trust these people again? I have no idea. So I have shelved my business idea until 2018. I decided to work on my Etsy store. That has been good and very time consuming. I make lots of stuff but then I don’t remember where things are or my passwords and takes lots of time try to get around that.

Hockey has been a time consumer. It takes so much energy out of me.

Been trying to figure out why my fingers and wrists hurt so much since January. I have gotten weaker and weaker.  First set of Blood tests don’t show anything. Need to get more done and then a nerve conductivity test. It is hard to keep upbeat and positive when you feel like you are mentally and physically deteriorating.

I am so glad christmas break is coming up and we are not doing a thing. No christmas dinner, no big events. I need to sleep and just recover and do some self care. I will be climbing back into my cave and not coming out until the Pee Wee Hockey tournament January 5.

Oh yes there is little in my bucket today for positive LOA, mindfullness and go team rah rah rah. Usually I am upbeat and all that jazz but to turn my frown upside down will require more energy than what I have at the moment. I have a list of things that I need to get done but I think I will be heading back to bed. Maybe it is the wind that aiding to create this ominous veil over me. I didn’t ask for this crappy TBI, Hydcrocephalus and the shitload of other ailments that are all invisible. I wouldn’t wish this upon anyone. Somedays it really does just suck! To be high functioning computer literate person in a community where supports do not have the skills required to help you makes you fall through the cracks and feel that maybe you do not need help but to only fall flat on your face again. Come on I need help getting up this fucking mountain. I just don’t know what or how to do it.

Signing Off

A walking grinch like zombie who is optimistic that 2018 will be better!

 


Leave a comment

One Size Does Not Fit ALL!

It has been a while since I wrote. After the botched Botox and uncooperative Nurse, I had an appointment with my Dr. From the brain injury clinic at Foothills. I asked if I could she could send the migraine protocols that she used on me over to the nurse who did my Botox. I explained that she put needles in my jaw for TMG and in my cheek below my eye. I also said that they didn’t use as many needles and I was in extreme pain so I took desperate measures to get Daith piercings done.

She told me she could not control how the clinic did their Botox for migraines and said I should come back to the clinic in Calgary. I agreed.  

Yesterday I had my appointment with her. I told her I went to see a local MH neuro who basically was shocked that I was not 60 or 70 because I was too young to have Hydrocephalus. Then he asked me to explain how I got hydcrocephalus as he was looking into my eyes, and doing my reflexes. He then interrupted me and told me he really didn’t want to know, but he was just distracting me so he could do a quick assessment. Then He asked me why I was seeing him, I said I didn’t know. He said that Dr??? Sent the referral. I said I didn’t know who that Doctor was and then he said my GP’s name. (SIDENOTE: Oh it was from January when my head was in extreme pain and my Hydrocephalus was acting up due to the sinus thing. I wasn’t the most happiest patient at that meeting. If only the Dr. Said to me at the time that no worries your symptoms get extremely worse when you have a sinus problem instead of saying no nothing was wrong with me just a sinus issue. ) The MH neuro then said that he could not treat me for pain, but another local neuro may be able to. He then asked if I had seen a psychiatrist. I said in hospital, I had neuropsych tests done twice. He said “that is psychology” and brushed it off and said to me that he is referring me to a psychiatrist because I look anxious. I told him I was anxious because he was a new doctor that I had not seen before. Meanwhile, I felt not listened to, pushed off and the typical MH dr. Response of I am not going to treat you because you are not an easy cookie cutter type of condition. So then I asked him…what he specialized as a neuro in MH? He replied that he had no specialty because MH did have any. So then I questioned what did he do as neuro then. Well he was not to impressed and really just gave me a brush off type of answer.

My Dr. In at the brain injury clinic said stop going to these appointments. I told her that I didn’t know who set it up. I thought it was apart of me trying to find local Dr. To take over my case management and begin to treat me. I told her I didn’t realize it was from that Dr. I saw in January. I told her that yes I was upset, but I was scared and in pain due to not only the sinus thing, but also being off the Pristiq for nerve pain (but didn’t  know that at the time) so that the Dr. Basically set this up so I could see a Psychiatrist and get my crazy all taken care of. She told me that I did see a Psychiatrist at Foothills more than once with the testing and they didn’t find anything crazy other than being anxious and slightly depressed at the time.  She then shook her head and said that having Too many cooks in the pot just mess you up so now I will continue to see her ever three months. She will make sure I am on the right meds and get me the help I need. I am so blessed and grateful to be under her care full time again. She has been the best Doctor I have seen since this whole journey began. 

It is so true having that one Dr. Who cares about what he or she does and cares about their patients makes a world of difference. It is the Doctor who wants their patients to become as good as they can and not just say well you hit the two year mark…this is a as far as you go. It is the Doctors who DO NOT provide alternatives, different approaches, resources, empathy, caring and only see patients as a ten minute time slot that keep the TBI suicide rate so high.  TBI is like any other chronic illness, it is lifelong, uncertain, often filled with confusion, isolation, limitations in mobility, sleep, cognitive, executive functions and a wide array of other physical, emotional and financial challenges. Pain and fatigue are the rulers of your day. Pain and fatigue can make you bed ridden for a few hours, to a few weeks. This can affect your mental well being because of continually letting friends, family and work down.
The downside of these caring and compassionate and driven Doctors are that they are far and few between. That because they are empaths, you can see the burnout in their eyes and their actions. My Doctor has shown these signs for the last year.  You can see it in her eyes, how’s she holds herself and the lines etched in her face. I only hope that there are resources available for her so she does not leave this career where she is amazing!!!!!!!!! Or that she decides to put herself on autopilot and not care just so she can survive the long grind until retirement. 

How can I help her? We usually bring a gift card or some sort of treat for her but I forgot yesterday.  Any suggestions? Has anyone else experienced such a great Doctor but see how the corporate pressures of trying to get patients treated in their local communities is hurting him or her.

Please let me know. I think we all should try to rally around the good Doctors who take their profession to heart and string up those shitty cookie cutter doctors who really cause more problems than solutions. How can we make the Canadian Medical system better rather than see it become worse and worse.


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

Chronic Pain & TBI

Chronic Pain is a beast. It is not pain from over doing it at the gym, lifting heavy objects or mountain biking, it is pain that does not respond to over the counter medicines and it is often brushed aside by stating that the pain is “psychological”. And when the pain doesn’t go away or get treated, your life can begin to unravel quite quickly. Sleep, cognitive, concentration, appetite, daily activities are negatively affected when chronic pain is not treated or under control. This then leads to anxiety and depression that only add the nasty mix and do not help in day to day living. Because your energy is now taken up by doing everything in your power to accept and move through the pain. You breathe, continue with limited activities, say affirmations, think positive, try herbal supplements and anything and everything that people suggest to try to find some relief. Until it all becomes too much and then you sink into that pit of despair because all the tools in your tool box no longer work. You question worth, value and place here on earth. You can not handle the feel of clothes on your skin, or even someone touching your. Your body is so inflamed that you are old beyond your years. You do not go out because any activity is no longer easy or fun. Joy and happiness are suck from your soul as you are bone weary with every move. You calculate how many years left and if you have the mental and physical strength to actually continue to be here in this pain every day until die. You start to think of ways out…anything to just get rid of this damn pain.  This cycle will repeat itself until….

You finally find a Doctor who understands that chronic pain is real and begins to treat the pain. There is not a text book type way to treat chronic pain. It is more like experimenting with different treatment options until a positive response is obtained. This approach takes time, patience and sometimes putting up with a lot of side effects from different medicines. 

My chronic pain is two-fold; the 24 hour a day migraine with the added bonus of cluster-like headaches that feel like ice picks through the eye. This pain is never gone but for the most part it is managed. The second part to my chronic pain is my neuropathic pain due to nerve injury or nerve mis-communication and response to pain. This has always been on the right side of my body. It feels like burning fire ants, burning and shooting pain that is continually there. Between my knee and ankle fluctuates from burning to feeling like wood. I have had this for five years and it will always be a part of my life.

However, last November, I went off my Pristiq because I told the Doctor that I was doing well and that I was not depressed so I didn’t need it. So I went off the meds.  Then comes January to March where I begin to lose it all. My Neurogenic pain is not just on my right side, it was on my left side too. My chest felt like it was on fire with the flames flickering upwards to my neck and nose. I was worried. My skin was horrible. The itchyness I had on my arm, chest, legs and back was so bad that I was looking like a meth head with open cuts.

Turns out that my Pristiq was not for depression but for my neurogenic pain. An off label use for it…oh didn’t know that. Thus my brain doctor will continue to see me because she just rocks at figuring out what the hell is wrong with me when no one else gives a shit. Also she prescribed this awesome cream that does not contain steroids but instead lanocain and gabapentin to help topically for my pain. Also endless itching is also from neurogenic pain. The nerves are just all messed up and sending weird signals.

So now my pain is not through the roof. It is not 100% managed yet…still annoying as hell. I really do not like the way my chest feels but I really have no choice but to accept it. I hope we can still find a better management solution. I am looking forward to my June appointment to see what my next trials will be.


2 Comments

March is Brain Injury Awareness in The United States

It has been a very active Brain Injury Awareness month. I have read so many wonderful tweets from fellow survivors and bloggers. I was even asked by Lyrysa Smith about Hydrocephalus. She is a journalist, book author and caregiver to her sister’s ABI after carbon monoxide poisoning.  She read my blog and then messaged me some questions. What an amazing person.

It is always meet such positive advocates. People with TBI and ABI need positive advocates. We also need to have more up to date resources in smaller centres.

I hate how I have to explain what my condition is, what an ETV is and now have to explain that my hydrocephalus gets worse when something is affecting my body to ER doctors. I will voice stronger rather than be put off like I am over reacting. I have a reason to be concerned. When my Hydrocephalus symptoms increase…head pain, pressure, more right side fire ants/tingling; I begin to walk funny again. My right side grasping and coordination start to fail…I can accidentally drop or throw items in my right hand. I also have a hard time understanding people especially when on the phone. My cognitive gets worse too. My short term memory is really bad normally and it takes and extreme amount of effort and time to move items from short term to working memory to long term memory even gets worse. My perception begins to change and the world can begin to get all swirly again and off balance again. 

These symptoms are the only symptoms I have to go on if there is issues with my Hydrocephalus. I do not know when I go into the ER if my ETV hole is partially plugged and flow is disrupted or anything other. I am told to go the the ER by all my Doctors in Calgary when I experience these symptoms. But When go to the ER here in Medicine Hat. I am shoved off into the cubicle B of less serious cold, flu & malingerer section and made to wait. (I don’t mind waiting as I know people come in with serious conditions but my can go sideways quickly and being blown off all the time is not cool). By the way the same one where I sat with Stephens Johnson’s Syndrome all blistered, bloodied mouth and peeling skin) as triage didn’t think I was serious when in fact I was being poisoned by my Meds and burning from the inside out. (PPL make mistakes and that nurse made a huge one. I still have rash and skin issues to date). 

I dislike that when you have a life-long condition and that you are made to feel you are wasting the medical system, hospital system, tax payers money when I go into the ER. No my condition never gave me a huge fever and my blood pressure would always read 120/80 (which is high for me but they always ignore that with a polite tight lipped sneer of someone who fully believes they are more qualified to know my body better than me) even before my brain surgery and definitely not after. Only once was my blood pressure at 170 or higher and they stick couldn’t figure out what was going on…infection…partial blockage. No on really knows…most likely me panicking because I couldn’t stand. 

 It is not like I go in on a whim. By the time I voice my conditions to my hubby I have thought long and hard if they are serious, is it just me over reacting etc….By the time I mention to my hubby, he will usually say it is better to waste your time in the ER and find out rather than sit and wait and maybe have things get worse quickly. He always asks if we should drive to Calgary and get the on-call neurologist. I always say no, that it is too much of a drive.  I dislike that knowledge level is not that good here. I dislike that I am going to explain more and more at the hospital. And then for them to say…it is not the hydrocephalus…it is my sinuses, anxiety, in my head, i am faking. Why put me on the defensive. Do you realize how much that hurts to me mentally especially when I am so much in pain and on the last rungs of hope. But when in fact they symptoms are my Hydrocephalus increasing because my body is fighting something. My neurosurgeon explained that Hydrocephalus symptoms will increase when there is something going on in my body. That my hydrocephalus baseline should return once what ever is going wrong in my body has been addressed.

So far I am three months of feeling off and I am not any better. The regular doctor gave me nose spray, I am taking allergy pills and I am now debating to go back to my Dr. Office and be a stronger advocate. The last time, the Dr. I saw thought I was a little aggressive. Hell yes! I am sick of not being heard. Sick of no solutions. Sick that they experts keep pawning me off saying not me…and saying I need to see someone else but no indication that a referral has been made. I am sick of the same cycle of treatment I had before my surgery five years ago. It is like they want you to fall through the cracks.

Why don’t  the Doctors and nurses just say…well your hydrocephalus symptoms are worse and that is an indicator that something is wrong in your body. Let’s figure it out so you can feel better. But no none of that. Oh hell no…no patient care…more like lets see if we can get her to go away. Truly our system is broken when you have to be a broken wheel, act like you are in severe traumatic pain (I don’t I get quieter and quieter as I focus on mindful meditative breathing and imagery) to be seen quicker and to be taken more seriously.

Thank goodness I have an appointment with the brain injury clinic in Calgary in April.  I know my Doctor there will listen to me. I am counting the days to actually be heard. Why is it that the brain injury clinic, endocrinology clinics and neurology clinics in Calgary take the time to really listen and find solutions. Why is there no out of the box thinking here in Med Hat? suggestions…the “let’s try this” type of approach. I mean really it does not take that much time to sit down and brain storm ideas. To verbally communicate, visually communicate with pictures from the computer. To take a risk and try something new.