Howdy Hydrocephalus

Understanding my unique gyroscope


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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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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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4 Year Anniversary

On September 4, 2016 I celebrated my fourth anniversay of my brain surgery. I thought about writing that day but I couldn’t bring myself to write. 

There have been some amazing hurtles that I have overcome in the last four years. I have become a stronger, wiser person. My brain continues to heal as I push myself. Life have become liveable and enjoyable again now that we have found suitable meds. I have overcome on the other side of some very dark questionable times as well. I held out and did not quit or give up. I have enough awareness now to be blown away. I know in my head what I have accomplished, but so many people do not because having a disability that is not visible leads to many assumptions.

I still have my sketchy quirks to work on. I notice them now more than ever. For example, my sense of time is often out and I still have not found a good calendar program that has a great nag alarm for my android phone. I still think I can remember a lot more than what I can so I decide not to put items in my calendar and of course I forget. I often forget what I promise to do…mmmm three weeks of saying I will put the boys phones up for sale and I still haven’t done it. I remember, then start and get distracted and then forget until  I am reminded. I have a hard time with conversations still. I will get nervous and keep talking and talking and talking. I often forget the clues that the conversation is over. I still have a hard time with ending a conversation. I am not too sure if the person has ended the conversation or how to end without being rude or too abrupt.

My organizational skills of planning and connecting from a to b to c to d is still a work in progress. I am not walking in a circle in my room trying to figure out what I need to do first but I will go from basement to upstairs to get one specific thing and in that two sets of stairs, I will forget what that item was. I will look around and grab something, walk back down stairs  and start working on what I was doing again until I remember what I wanted from up stairs. The process then repeats itself numerous times  or days. So sometimes getting things done is painful.

I tend to hyper-focus on new things and block out everything…like kids, meals, laundry. I bought a cricut which has been taking up all my time. I am loving the fact that I am suing Adobe Illustrator, manipulating graphics and fonts to create items to sell. I am looking forward to developing my crafty hobbies into a small biz. I am even looking into furthering my education. I am looking at my art therapy post diploma rather than recreation therapy certificate. The post grad diploma is a step forward rather than backwards with a general certificate where they want you to take their technical communications course even though I could probably teach it. How to write an email, proposal letter, make a brochure, resume….yawn. No challenge there. The only problem is to pay for my course. I have no idea what is available out there for resources to help pay.

So many steps and mountains climbed. A few more to climb but it all seems achievable now. Here is to how great and adaptable humans are. How strong we can be and how we can continue to learn on a daily basis. I am truly grateful! I am truly grateful to have been faced with all of this. If I hadn’t been challenged, I would not have grown so much. I look forward to tomorrow, the next day and to see how fare more I will come in the future.