Howdy Hydrocephalus

Understanding my unique gyroscope


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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.  

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Grateful and a Big Shout Out!

I just wanted to give a big shout out and thank you to all those that have been reading this blog.  I have had people from 11 different countries read this blog.  I am amazed.  I know that I search the Internet every night looking for someone going through the same thing to connect with and so far I haven’t found a similar story.  I have read so many stories about parents finding out their child has hydrocephalus in utero; their emotional struggles; their child’s physical struggles once born.  Or I have read stories of older people, one step away from being put into a home & being misdiagnosed for years; to being successfully being treated for Normal Pressure Hydrocephalus and gain their life back. It has given me a new perspective on the word perseverance and strength that makes my journey pale in comparison.

September is hydrocephalus Awareness month in the United States. The Hydrocephalus Association is an amazing resource for support, stories and research. The Hydrocephalus Association is the organization that developed the only guide for the unique SHYMA group which I fall into. In Canada there is the Spina Bifida & Hydrocephalus Association of Canada which I thought would be a great resource until I received an email from the Alberta representative indicating that they only support people with Hydrocephalus as a result of having Spina Bifida; so I am shit out of luck!  Nice no other help from them or suggestions. I was ready to help support and promote, but now I feel that the Spina Bifida & Hydrocephalus Association of Canada can kiss my arse! (vent done!)

I am appreciative and very grateful of the support shown to me online and in person.  This experience has allowed me to re-introduce myself to writing again. I had moved away from writing for me to putting out technical reports.  Now that the fog has lifted, I am excited to continue writing as it is my re-introduced love and to begin to shoot photographs again.  There are a couple of contests that I would like to enter.  Once my kitchen is done, I see a stock shoot calling my name.  I am always looking for models for this – family, couple, cook etc….  I just have to get better to be able to set up the lights and move freely from downstairs to upstairs.  I can not wait! In the meantime, I have about a 1000 images to upload to edit and upload to stock – if only I could remember how to edit efficiently again.  Damn brain misfires!  I think this may be a hint for me to move from Photoshop CS3 to Photoshop 6 – dare I take the plunge to learn a whole new platform…maybe…but not in the next couple of  weeks, but soon I think.