Howdy Hydrocephalus

Understanding my unique gyroscope

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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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Just call me the Pee Lady

efe1eb65c8742b301ae79caf263ab0cfThis has been a crazy month…I think most of February was shrouded in viral illnesses by everyone in the household.

Almost everyone is on the mend…let’s hope Wy’s cough doesn’t go any further.

On Feburary 29, I took the 6:30am shuttle to Foothills…got there for 11:30am…appt. noon and shuttle home for 1:15. I was hoping I would have caught my son’s hockey game, but I missed it. At that time I had my Botox shots and we discussed phasing me out of getting Botox at the clinic as they are mandated now to pass off services to local providers because clinic is in high demand. I received a list of two people in Medicine Hat. I phoned the brain injury clinic and told them which Dr. I would like to see.

I will still see my Dr. for brain stuff. Since June last year I have been peeing way more than normal; getting a crazy rash that goes away with prescription paste but only to come back again once I stop using the slimy gunk; I have become really weak and even walking up stairs again makes me get short of breath again. I am always thirsty, but if I drink enough to quench thirst, I am peeing every 15 minutes. So I tend to eat sugar-free mints to help with dry mouth and thirst and deal with dry cracked lips. My hair was still falling out then and had stopped growing and I have been a wreck with cold sensitivities. I am so grateful that we have had a super warm winter so far! My weight has fluctuated from gaining to losing with no diet changes. However I have no appetite and thinking of eating food doesn’t make me feel good. So I have been sharing smoothies with my son in morning and trying to remember to drink vegetable juice.

I have been to my GP about these issues and we had blood tests done. GP was going down the list…blood sugars..excellent, kidneys excellent, no infection…no diabetes then he says liver is okay…mmm not good. Then he left it like that. He gave me a hormone to try…didn’t really do anything. I then got sick and couldn’t follow up so I mentioned what has been going on  to my Brain  Dr.

So we have a plan. More blood tests…check done yesterday. Today I get to to stay at home and drink to hydrate. Then when I have to go pee, I run upstairs and pee in a container; wash hands; Then I go to the little fridge in garage and grab this large orange container and go upstairs and transfer the pee from little container to large container; wash hands again; then bring container to garage; put in fridge and wash hands again. OMG I am not leaving the house with my big jug of pee today. I couldn’t imagine doing this in a public restroom…gives me the wheebie jeebies just thinking about it. Yes I could use the downstairs bathroom…but I don’t. I like my (okay hubby uses it too) bathroom only and that is upstairs. Yes I may be a bit crazy; somewhat of a germaphobe but I am what I am!

The benefits of my little set up is that I get my stair workout done, I will have an arm work out too! I can see this jug getting quite full. The downfall of this 24 hour urine analysis is that last night I had to show and explain the jug to the boys. That yes it is Gatorade orange bottle in the fridge but it will not have Gatorade in it and that they should not put anything in it or drink from it that it will have pee in the container. Their expressions of horror brought joy to my face….ha…ha…ha… evil laugh. I gotta get my kicks from somewhere!

I have really no idea why I am doing this test. I don’t remember the Dr. explaining why. I curse myself for looking up on Google last night too. Why…all the stuff sounded pretty serious. Better to rule out the simple and the weird scary stuff first and pick away at what is left to look at…I guess:)

The next step after is to wait for referral to an Endocrinologist and results of the tests. There could be something quirky with my pituitary or hypothalamus. I guess after a TBI/ABI or non-traumatic brain injury (just found that new terminology and suits my situation better) it is common to have Endocrine issues.  My great TBI/ABI/n0n-traumatic brain injured community on Twitter have been a great support and wealth of information as many have gone through this before. And once it is solved lots have had big changes with medication, vitamins & supplements.

So for today you can just call me the Pee Lady because I will gladly hold that title with my big orange jug in hand. download