Howdy Hydrocephalus

Understanding my unique gyroscope


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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.

IMG_1370.JPG

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Missing Me

For the last month and a half a series of events accumulated for me creating the ultimate pity party for missing my old self. This reached it’s peak and dissolved mostly when my son re-broke his right leg again. He broke it the first time in October during hockey assessments and the second time at the last game of year in a tournament last week.

So what led up to me missing my old self? Me missing the old me has never gone away. I was so much more than what I am now. I was an adventurer, I had endless energy, like to keep busy all the time from morning until night. I was raised to be a strong independent person. I was not afraid to use my brain, my voice, reason and research to get my point across at work and in life. I had two little kids that never knew that they accompanied when I had field work. They thought we were always out for a drive. My kids were to young to remember the old me. They only see me as the “lazy mom” who sleeps all the time. Usually I laugh it off, but lately, it has been hard to laugh off my quirky new me.

I am a lot different now. I am Skinnier than I was before by about 15lbs but I am 1000% times weaker and 1000% fatigued where when walking up stairs, I lose my breath. I am no longer spontaneous, I have to plan and allot my day so that I can make it with the least amount of napping as possible. I have to plan my day to minimize my visual, auditory stimulation, so I don’t get overwhelmed. Sometimes that requires me to do odd things, like move to where less peaople are, leave or just not go at all. I easily forget what my intent was for shopping, even with a list. Often I will forget the same item on the list five or six grocery trips in a row. I just misread the word or don’t the the word. I try to understand group conversations but honestly, that takes a lot of work and usually am behind in process in the conversation so that when I talk, I am behind. My anxiety goes off the charts in the new situations with people. My mind goes blank so I don’t remember what I am going to say and my stutter comes out.

So what led of to not being patient about the new me and missing the old me was seeing people from my past and then socializing with new people.
I had three bosses. Two I was very close to and both their wives were just awesome. I say 2nd in command’s wife at a local store. We were chatting about paint chips and colours when she said “Don’t you recognize me?” Awkward is all that I felt. We chatted for a bit and I left.

Then two weeks later, I saw the company founder in Canadian Tire, we were both looking at the seed growing trays. He gave me a big hug and we chatted. He wanted to know about my health but at the same time, you could see the sorrow in his eyes and he really didn’t want to talk about my health. Then I got his wife’s name wrong and we parted ways. When we were talking, my vision started to get all wavy like aura’s for a migraine. I made it out to the car and rested for a bit, because I thought I was going to pass out. After this I felt physically horrible for a few more hours.

I then got my recent neuropsych report in the mail. That was no picnic to read. It is hard to read that I have neurocognitive impairment typical of Hydrocephalus Squellea. I started to feel so crappy that I began to visual journal to help boost my spirits.

A week ago, I was thrust into my first ever hockey parent away tournament. The social anxiety got a hold of me more than a couple times and there were awkward moments, bouts of word finding, stuttering and complete mouth hanging open zone outs, but I survived. I had a fun time…socialized, drank some ciders and beer and got to know some great people. But so very very tiring. I didn’t get my rest in and my functioning was near empty when my son broke his leg. I spent so much time recovering that the Easter Bunny almost made a big mistake. I had thought I had bought Easter Candy so when hubby and I went out, I said we didn’t need much. So when I checked the bag of stuff I had originally bought there was only two Easter Bunnies. I raced out the the store last night around 7:30pm to scour the empty shelves and peruse the Easter Aisle in hopes to get more Candy for the two kidlets and our two international students. CRAP….today I remember that I never did buy much because we were to be in Vancouver for Easter. So problem adverted right.?! I stocked up on candy…now we have enough to little eggs and jelly beans to last until summer. I fall asleep, D crawls in bed with me while Wy and hubby are downstairs sleeping. At 1:30 I jump out of bed….crap…the Easter stuff needs to be put together and hidden. So for an hour…I am trying to hid candy with a restless broken leg kid on the living room couch who is sitting up in his sleep, calling out and I am ducking behind chairs, doors and the kitchen Island. All I can say is that morning came too quick and I have had a lazy lazy day of reading, sleeping and eating chocolate.

We did have turkey for dinner, but instead of a full turkey, I got one of those box turkey breast rolls. Kept it easy and it made a world of difference. So the events of last week kicked me out of my own personal pity party and I am glad. I am sure they will pop up again.

It is just so hard because people you used to know…know you for when you were so much more. Now I just don’t feel whole. I am grasping,,,cringing when I respond that “I am a stay at home mom”…my bias and self-loathing running in my head. It is not like it is really popular to say “Hey I am one of those lazy people on CPP disability who should just get out and get a job” It is currently a rough economic climate so when people spew their frustrations, I am unknown to them usually a part of the lazy crowd. I just keep quiet, but you know it still stings. Doesn’t matter even as an adult, when people are mean spirited or cruel it still hurts. It is hard when the people around you also get tired of “supporting or caregiving” for you. They don’t like the added responsibility of picking up slack. I just can’t get anything done. I forget I was working on organizing my passwords, I forget I was working on a business plan, I forget to cook…I just most likely get distracted by other stuff and short term memory loses it. I forget what to do for my day unless I write it down the night before. A week later, I will not remember what I did.

So I am glad for the helping distraction. I have learned this week I still really like my art and creative making because I missed it so much. I also have enjoyed helping my son quite a bit. It feels good to be wanted and useful. I guess I will continue to take the good with the bad with a smile on my face and eventually, all will fall into place. When you fight for stuff and keep getting walls, then maybe that is not an intended path so I must continue to remind myself to be open and allow grow and move forward on it’s own. And yes to my lack of patience…it will take time. GRRRRRRRRRR!


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Bring TBI’ers, Elderly & students together

I realize that I am no doctor, researcher, therapist or anything in the medical field. Because of my luck, I have been exposed to quite a bit of resources in the medical and rehabilitation field that I have some insight that may help people with aphasia and brain injuries.

What got me thinking was the news story of a Dutch retirement home that give students free rent in exchange with socializing with residents.  I think that retirement homes isolate people with ageing and chronic illnesses that instead of creating a resilient environment it is an isolated and forgotten place.

When I was working as a government employee, I was so shocked to see that there was no job transition/mentoring in place, especially with highly skilled employees that were almost ready to retire. I watched talented people retire with their wealth of knowledge not passed on. A new person gets in the position and basically starts over. There is much overlap and redundancy and re-inventing the wheel. We have lost a generation or two of information transfer due to this. It is a shame! Then we are experiencing the baby boomers retire at 65 healthy, strong and going stir crazy because they are now perceived to be “worthless or old or redundant” pieces of society. That is hurtful. I am so grateful that the 2015 movie Intern was released. It is starting to mainstream the breaking down of barriers and re-starting generational information transfer.

I then also saw first hand how isolating health obstacles can be. When I was doing my speech therapy once a week and attending a small speech group another day a week I felt I was not making progress in my recovery. I went into my son’s class and read to the class…stutters, stammers and all. The kids didn’t notice at all and thought it was apart of the story being read. I felt great after that. I asked if they needed help with reading and so I spend once a week for 30-45 minutes leading a reading group with five kindergarten students. It was here where my speech, thinking improved the most. I also felt like I was apart of a community and not isolated. Even though I attended a group with 6 other aphasia people and two workers before, it was more of a health treatment type of feeling. The feeling of going to an appointment for dentist or something like that. It was not a community feel, but a medical feel to it.

I really think that bringing TBI’ers, Elderly and students together in a learning environment would benefit everyone. Even if it is students going into the retirement homes to collect stories, help with crafts, reading, exercise, board games or just socializing can be beneficial too! I even think that having a retirement home/day care would be beneficial too. Daily interaction with kids…what couldn’t get better than that. If there was mentors brought into school and used to help kids with one on one stuff or projects.

So my hope is that all of us tossed to the side people find their community and become less isolated. Being able to think, do physical activities, work on your quirks in a “normal situation” can help recovery. It helped mine. I was practicing my tactics in a real world situation instead of an office.

This type of working agreement could be beneficial to two goverment areas medical and education. There may be some cost savings in long term health care and in education with the use of volunteers.

Who knows…but I have positive thoughts that it could work.


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 It is no fun to be on the sidelines just lying in bed. Not even sleeping – just breathing and visualizing to make it through the pain. My current operating system does not run smoothly but goes in waves of energy. Sometimes I do stuff until I drop from exhaustion because I am trying not to focus on the pain.  Then I collapse on the bed and my right eye tears and right side of body then shuts off.  I can feel it – first the face then down and below the elbow and then leg.  I have to try with all my might to lift my arm.  It feels like it is paralyzed.  After an hour or two or three or or four, I am able to move again without concentrating.  I am dazed, confused, dehydrated, dizzy but up and ready to be apart of life again.  I think my weird stop, drop and roll into bed behaviour is like or really is a hemiplegic migraine. I know that they have tagged me as having a chronic daily migraine with ice pick clusters. I am not a chronic migrainer from overuse of over the counter pain meds, but instead from over excitement of neural pathways that have not calmed down after surgery.

I try to keep a headache diary but it gets old from putting down the same information daily.  Usually the pain or body shutdown hits around the same time everyday. 

I feel like superwoman on the rare day that I have not pain.  Then I go crazy and of course overdo it.  I really have to watch for dehydration.  I avoid chocolate, red wine, moldy cheese and most of the food triggers except caffeine (cappuccino is my treat)I try to be prepared for loud noises or prolonged loud noises with ear plugs (if if remember them) or I take the energy hit and sacrifice some up time at home. I try to watch for bright lights or those nasty fluorescent lights by wearing tinted glasses until you of course break both pairs by kneeling on them. I try to use ice or let cold air hit my face – it doesn’t stop the pain but lessens it.

Most days this is how I feel. A mixed media piece I created as part of my personal art therapy journey.Self Portrait Mixed Media
and this is my view. An iPhone pick of how I seem to be there but not really exist.
may2014 403

The doctors and I have tried all sorts of different meds. In February, the decision was made to try Botox as a way to desensitize my overactive neurons. It took a several months to get extended health approval as this is an expensive procedure. So on April 24, 2014 I was injected with 31 needles. When being injected, there is pain, my right forehead felt a little uncomfortable, but it has less feeling than the left anyway. When she injected the left side it felt like “holy shit burning acid being injected” I have no idea why people just like their wrinkles rather than put up with that pain. I was injected in my temples, various other places on head, neck and upper shoulders. The injection time took about 15 minutes or less (felt more) and I can still see injection sites on my forehead. Mostly it was quick and didn’t have too much pain. I just was not expecting to feel the Botox to be felt going in – No one warns you about this. However, this $1000 procedure is worth every penny if it works and I am not sidelined from life too much.

I didn’t notice anything significant right away. My head felt like lead and I can’t really raise my eyebrows at all. However after two weeks, there is some positive results. My pain is still there but dulled and I have had some sidelining attacks but I am currently writing on the computer without tinted lenses. My Neurologist says that we have to give this type of treatment at least three tries and then evaluate it’s success. So far I am positive and fingers crossed that we re-route the over active brain activity to a more important part like my right side of my body.

Here’s to being positive and changing my views on a the use of a beauty product for my brain. Oh how High maintenance I am (LOL)


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Re-Discovering

I have been re-discovering the joy of photographing things again with my “big gun” Canon camera. I never stopped taking pictures, but used my iphone or point & shoot rather than take out the “big gun” for anything.  It was waaaaaaay to much effort to organize myself to take the camera out…I wasn’t feeling creative, inspired, energetic or anything and that was a big change for me.  I used to have a system for editing my images for stock and I was forgetting steps and couldn’t remember how to edit nicely anymore.

It has been so much  fun getting out and shooting again.  With bringing out the “big gun” and all  it’s accessories, I am re-learning how the darn thing works again. I am also taking the time to re-learn to edit my images again.  I may begin to upload for stock again, but right now I am enjoying just playing with my images and when I am ready will need to re-learn how I did my stock editing steps.

With all this additional physical and creative energy I discovered the wall numerous times this week where I would get very tired, dizzy, sick to stomach, sore head grumpy person.  I really do know now what the brain/body disconnect is.  My brain keeps yelling at me that I am great, wonderful, perfect; and that I can do anything and everything.  My body then follows through with physical stuff until my body just decides to quit without any notice.  This lack of forewarning had me down for the count from anywhere from two days this week to a few hours of power resting.

I know that I will not be able to shoot pictures right away after my dad leaves so I am trying now.  After my dad leaves I will be focussing on getting some sort of routine that I can remember.  Iknow that I can not hole up in the room to edit pictures because the kids would run rampant and I can’t do more than one thing at once.  I can only focus on one thing so I would lose track of them.  I am also hoping the fatigue will go away with time!  Each week I get better and better.  With the help of Occupational Therapy at the hospital my memory, concentration, retention and understanding will get better and better.