Howdy Hydrocephalus

Understanding my unique gyroscope


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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.


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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!


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More than Just Surviving!

I found this great blog post and they get it!

Adjusting and transitioning after brain injury is a very hard but worthwhile process.

It is more often overlooked than addressed. When you are not given support or resources to move forward and find the new you it is a long process to gain footing to be able to move forward in a meaningful way.

It is easier for therapists to say you are just depressed or anxious and treat with a pill. I have experienced this and I just shake my head and think to myself “no shit Sherlock…Where did you park your squad car. And wonder if they would be saying this shit if they had experienced the same thing.”

Please read this blog post. https://tlcrehab.wordpress.com/

I think if the therapists, doctors, helpers had to spend a month in the shoes of a brain-injured person or persons with any other lesser known condition, their care, compassion and treatment suggestions may be completely different

 


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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.


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Creating My Opportunity

I have had my fair share of people questioning me about my ABI. Those people often only see me for a small amount of time. I expend a great deal of energy to act normal. Okay I know that I am not abnormal, but it takes a large amount of effort to have a conversation with people who I really don’t know especially if Chris is not there to let me know that the person does not want to talk anymore. I have come a long way but the cue reading and may not always be there. Some days I just do not have the energy, patience or gumption to even socialize. I often hole myself up at home and socialize online. 

My fingers type way faster than my trying figure out what I want to say outloud. I have spend the last three months coming up with a great business idea that I feel deep down will work awesome for me. I have applied and been accepted into an Entrepreneurial program for disabled people. I am just waiting to see when I start. I have started putting things on the computer, making my website to the point to where I will need help to finish…long way to go yet; and I have used Airtable to make an amazing spreadsheet to help with Market Analysis. I have the brains…okay I am slower at processing, have attention issues and my science side has been disrupted. This does not affect my overall intelligence. In fact, it has really increased my creative side even more than what it was before all this began. 

Lately I have had some brain function increase (okay I forget what I was going to write, but I was so amazed that some science stuff spewed from my mouth effortlessly like it was locked away and a key was finally found). But then as I improve in some areas, others started to crap out again. My short term memory has been giving me more grief. But oh well…with an ABI you body and brain may function awesome for part of the day and then crap out for the rest. It is that ebb and flow of life long recovery the frustrates others around me. I have to laugh at their frustration because they are only annoyed by little things like stuff I have forgotten. I have to live with it all for my entire life. Do you know how hard it is to maintain that smile, be positive and carry on. To take the continual words of “you must of misunderstood” (often that is the case but not always. Maybe You misunderstood me and I actually know what I am talking about) Or that you can not be productive or worthy…that you are a leach or one of those people wasting our taxpayers money. Or that people only see you for the disability and not see your talents.

I openly speak out about my disability now. I advocate for awareness and inclusion. I write about my struggles so that others who read can gain understanding or support that they are also not alone in this. 

Okay I finally remembered about one part I wanted to share…I recently watched the movie Wreck it Ralph with the kids. I wanted to watch it for two reasons. First, I like animations movies and second it has a great analogy of a brain injury.  The locked secret files (where the evil king hid the games memories that he was not really the leader) in the computer game brain are a great visual of how a brain can be after an ABI or TBI. Where information that has been stored in your brain is all of sudden locked away because the neurotransmitters have lost their connection. This connection may re-wire itself with no help; it may re-wire with lots and lots of rehabilitation or it may never re-wire. It means you may have to re-learn the information again or that you just say screw it I will find a new way to do/think/act…it is apart of the new me and you own it. 

Then the Boys and I watched Finding Dory…okay I only saw about half of it but it was the first time I had seen it. Another great ABI, TBI type of movie. I totally understand and love my boys even more because when the first time the boys saw the movie they kept calling me “Dory” in their little boy loving ways. They are perceptive and accurate and just call it like they see it. They saw me pre-surgery, post surgery in neuro ICU…at home struggling until I could get into in patient Unit 58. They saw all the other residents in Unit 58 in all shapes and capacities. They saw me when I couldn’t drive; when I could drive only to the school and back to now where I can drive to Coleman or Calgary. Next will be my trip with them to Vancouver, BC. It may take me three or so days to get there but we will!

So instead of trying to fit in….I am going to stand out. I am making my own legacy. I am going to make my family proud. I am going to make this business work for me and not just work for a business. This business is not just about money. It is about giving back and to hopefully include people who are often excluded in the workforce. I believe I will be able to help make at least one or two people feel that their lives are meaningful again. Maybe even help more. I am setting my sights high. I am positive that my hard work, persistence and re-learning of who and what I am and what valuable skills that I have to offer over the last five years has cumulated to now where I feel comfortable knowing this is the right move for me. 

I am moving forward with the new me and I really do like her alot.  This is the right time to take the risk, jump in with both feet and just go. I can create a legacy by being stagnant….especially since it is Brain Injury Awareness month and I have been overloaded with the negative news posts and research about how exponential the chances of me acquiring Alzheimer’s are after a severe brain injury. Geeze thanks alot…Hydrocephalus, ABI, Steven Johnson’s Syndrome, Pituitary, Sleep issues, Mental Health issues…hell I am not taking that kick in the pants. I know I have amazing genes on one side of family. I am living as long as my Gran Gran.  So I hope that you can discover and create your own legacy. 


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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.