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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Degradation

The term degradation is used lots in environmental field. I have used it to describe soils, bed & bank stability and creeks etc…I never thought I would use it as a descriptor of my body until about a month ago.

deg·ra·da·tion
ˌdeɡrəˈdāSH(ə)n/
noun
the condition or process of degrading or being degraded.r
“a trail of human misery and degradation”
synonyms: humiliation, shame, loss of self-respect, abasement, indignity, ignominy More
GEOLOGY
the wearing down of rock by disintegration.

I feel that my body is wearing down; I have lost good muscle; weight; feel like I have bowling balls as feet – basically dazed and confused!

After my last Brain Clinic appt where I expressed how I felt I was losing it. I had went from gaining weight to losing weight with no changes in diet. I was no longer accepting that I had to pee a million times a day. I was sick of sleeping so much as my daily resting had climbed to 5/6 hours a day. I was sick of being out of breath when climb a set of stairs and questioned how I could go from swimming 20 minutes to barely two minutes. I explained that I was starting to feel cognitively like I was before surgery – the dementia-like symptoms. I told her my dermatology appts. did not help my wrinkled dry and rashly skin. Cuts were taking months to heal. I was forgetting where things were such as my Dr. Office’s that I was going to phototherapy three times a week.

So almost three months ago, my brain dr. Upped my dose of Pristiq and then set me up with a 24 hour urinalysis and blood work. I remembered to do the tests about two weeks after my brain clinic appt. Then I forgot about the tests. After someone asked about the test results, I exclaimed “Oh yeah…I forgot to find out. I just thought everything was A-OK because I didn’t hear back.”

I swear the next day after talking with my friend I get a call when “napping” I let it go to voicemail, like every other call I when I don’t recognize the number. It took me 20 times listening to message to get the number and I still didn’t understand what I had an appt. for. The person spoke too fast and too muffled for me to understand. So I dial the number and miss what the receptionist says. After I explain that someone left me a message, she looks me up on the computer.

It turned out to be the Endocrine Clinic had me in for an appointment that I didn’t know I had. The lady explains that the office is located in the “Old Children’s Hospital” as she was about to hang up…I say “Where are you located again?” She says “Old Children’s Hospital.” I say “Where…in Medicine Hat, Calgary, Edmonton?” She thought I was from Calgary. After that was worked out I got an address to Google and then waited anxiously for five days.

Chris and I met the with the Endocrinologist and it was a good appointment. He looked at test results, my history and said that “I was a complicated case” I thought “No shit Sherlock. Hope you can help me or I may end up in the looney bin” So he looked at me skin, rashes, throat, arms, legs, feet, skin etc…but doesn’t say much.

But what he does say is hopeful. He asks us “if we have medical insurance?” Chris says “yes…why is prescription expensive?” He says for insurance to cover prescription a couple tests are needed to confirm diagnosis. He is suspecting ADH (antidiuretic hormone) and Growth Hormone irregularities. He explained that they were hormones from the pituitary gland.

The doctor explains that a nurse will call to explain the tests and to book a date. He said that the tests could be a two to three months down the road. We leave with knowledge of the test names and feeling that a solution is around the corner.

IMG_1368.JPGI didn’t expect to hear from nurse so fast nor have my tests about a month after the Endocrinology Clinic appointment. I am to have two tests done. They both can not be completed the same day. So May 31, I have my water deprivation test. I can not eat or drink anything from 8:00pm the night before and the test begins at 8:00am the next day. I know I have to keep giving pee and blood samples until I lose a percentage of weight or they get the test results they want. The nurse said the test can go usually 4pm. The second test the next day is some sort of stimulation test where they take blood tests and then shoot you up with something. I didn’t take in that part of the conversation as she said she would go over everything with me during the water deprivation test.

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Cautiously Optimistic Round Two

images (2)Monday May 11, 2015, finally got to go see my physiatrist at Foothills. We talked about my being in pain since April 5th. We then talked about the emotional roller coaster ride that went hand in hand with the pain. She also ordered a CT scan because of the weird auditory things and head pressure that has also been happening.

She gave me a new sleep prescription to use if needed.

We talked about different alternative therapies that may or may not work for me. I liked that we talked about her research in sports and concussions. We also talked about the placebo effect. How that 30% of any treatment, drug, therapy is placebo effect. So it is hard to determine which alternative therapies would work for me. Then hubby brought up the if using medical marijuana would be an option. Because my kids where in the room, the Doc asked if we smoked via symbols. We said no. She said there are three ways smoking with a vaporizer to get rid of toxins, using a nasal mist or by pill form.

The Doc thought that Cesamet (nabilone) would be a great adjunct treatment with the Botox treatment. Cesamet is a man-made form of cannabis (also known as marijuana).

f43231246f0fb14e63a92944ab735993So I had nothing to lose. From day three on I walked around with a perma grin not because I felt high, but because I felt very little pain.It still feels surreal to be the most pain free in over 3.5 years. The pain is not gone, but it is amazingly reduced! I still get the fire ants up and down my right side of body and face, but instead of pain, it is just like little marching ants feet. I get break through pain from weather systems, over stimulation and from my eyes, but it is nothing compared to what it was. My right eye still does it’s own thing and I can feel it twitch etc but there is no ice pick or butcher knife piercing through my eyeball.  I still get the aura symptoms of weird visual patterns and wonky vision, but I don’t get the full headache pain. We had a thunderstorm warning yesterday and a small storm today. My head felt like I was wearing a helmet, heavy and constricting. I could still feel the pressure, but not the pain so much. It is quite the feeling to be a human bobble head that may explode at any moment but without the physical shooting/throbbing ice pick pain.

chronic painI feel free and light! I do not feel high. I feel very awake and alive. It is so amazing to have some of my life back. The world is not fuzzy or blurry (still can be tho) but way more in focus. The huge heavy backpack, chains, rocks of pain have been decreased to a manageable level. I had no idea how much I used the power of positive thinking, mindfulness and relaxation breathing to help with my pain. I know that I would always minimize the pain because why would you bother telling people about it too much. I mean the story gets old for me, so sure in the  hell it has gotten old for others too. I have some side effects, such as it has slowed down my digestive and motility to a near stop. This does not make you feel comfortable so I am taking steps to get it under control. I did feel a bit nauseous but hell I was feeling sick to my stomach 24/7 for the longest time so no biggie and that even went away after about ten days of treatment. The pill hasn’t cured my brain injury, but it has brought some relief to pain so I can hopefully now work on my brain quirks. My memory and awareness still needs to improve. I was towing my hubby and son behind in a dune buggy and didn’t realize until I got back to the truck that the rope had snapped and left them in the dust over a few hills back! I posted this today and somehow, it showed up for a bit then reverted back to a draft that I thought I had erased. I have no idea what button I pushed, but what was showing this evening was not what I had posted this morning. Boo Hiss…disappeared to me hitting wrong button when i tried to correct a date. I also put last years date. I honestly still thought it was 2014. OMG it is almost half way through 2015.

kelly dec 2014 359 - CopyHowever despite how squirrelly I am acting, I feel like I want to take flight and just grab life again and be a part of it. But all my family and doctors all want me to take it easy. My hubby wants me to be at least six months pain-free before I decide to do “something” That “something” I am still working on and look forward to doing eventually. Here’s a big cheer for being cautiously optimistic round two


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Claustrophobic Tendancies

I became claustrophobic after being shoved in sleeping bag and not let out at a birthday party sleepover.  Those damn parties can be cruel, especially if the birthday girl was forced to invite you because the mom’s were friends. I wish I could go spelunking as it looks  like fun but instead it is hiking or rock climbing. When I was younger my claustrophobic tendancies were worse, but now I can recognize the weird fear building within me.  For example, I can often begin to feel the fear and anxiety in a crowded space.  I  bring myself back under control by breathing.  It is all mind over matter!

When I am signed up to have an MRI, I am still a little apprehensive about the whole thing.  I always given the option  of being put under, but really who really wants that to happen to them.  Last friday I had to go to Foothills Hospital in Calgary, Alberta for my final MRI before they do my surgery.  So I am not so nervous, as I am becoming a veteran at having this test done.

I am given ear plugs – thank you! I lie down on the table, they put a cushion under my legs.  The tech shoves foam pieces around my head and neck to keep me from moving as I let him know that I am a figiter and will do my best to be still. Then the tech reaches for it – the mask!  This is where the feeling of claustrophobia begins to stir.  I know they describe it as a football helmet…but no…it is not. I played tackle football and have worn a helmet.  Tell that story to another female who has not worn one those helmets before. To overcome the fear stirring inside me, I close my eyes.  My eyes will now be closed for the entire test.  Focus on my breathing…Focus damn it, I don’t want to be here any longer than I have to.  Come on it is mind over matter – breathe and think of travelling, the beach…anything. I ask how long this test will be.  The tech answers “25 minutes.”  I shout out “easy peasy as the last test was 1.5 hours long!”

With a lurch the machine moves back and I am in the donut, my own little space capsule. And the concert begins.  There is on large sound repeated by a few shorter higher pitched sounds.  I imagine cartoon aliens having a conversation and I am watching the show with my boys.  I was feeling  good about the test and thought I would slightly open my eyes – Wrong thing to do! I quickly shut my eyes again and calmed myself down by focussing on my breathing.

The mind is a weird thing, I know that I was flat on a table facing up, but I felt like I was moving around – twisting and turn – very strange stuff.  Then the final test comes and it like an emergency siren going off – dong…dong…dong…dong. The ear plugs weren’t really cutting it but now I am imaging hiking and looking out at a beautiful view…a nice beach with blue sky and warm sea breeze on my face.  I know I can do this!  The sounds finally stop and with jump I am actually, not imaginary, moving forward.  The tech comes and takes off my mask right away.  I open my eyes and say “thanks” as I sit up and are ready to jump off the table.  I am told to wait because the table is raised…so the movement may not have been imagined after all!

I survived quite well and I am getting over my claustrophobic fear.  Next time I should try spelunking…easy cave spelunking where I don’t have to wiggle on my belly.