It has been an really long time since I have written. I have not fallen off the planet, but have been challenging myself even further. Even though I love to write, there are many other things I have been focussing on such as creating art, graphics, starting a small very part time graphic design and creative life coaching business. I am unable to fit them all into my life at the moment. One day soon I will be able too! It is a goal I am working on.
My life has been changed since September to end of December. I had amazing energy, concentration and steps to move forward. I was able to attend two craft shows and make for me a lot of goods. Christmas and the New Year were a success. I got everything done for the family, rested & played too! But then January 1st, I woke up with the worst cold ever. From January to now has been an interesting month. I have learned some takeaways about Hydrocephalus that I did not know before. Because of my new knowledge, I have finally decided to work with the Hydro instead of fight it in this case. Fighting it will only make it worse.
So What did I learn? I learned that if there is a stressor on my body like a cold or a completely blocked sinus (with a mass that potentially they think means trip to Foothills again soon) can affect the baseline of your hydrocephalus. So what does this mean.
My MRI showed that I had amazing flow. I love that my Dr. Sits me down and we look at the images. I love that he explains what I am seeing. He said the grey area where my hole from bottom of 3rd ventricle show cloudy grey. He said that was turbidity. I said “that is to be expected. When flow of fluid has to go from big space down a narrow tube – it speeds up – basic physics…you know my background before all this was science!:” I almost knocked myself off my chair when this came out of my mouth. I was shocked as shit that my brain just pulled off something that I thought was long gone. Nope just in hibernation waiting for my neural re-connection.
Distracted Side note Inserted here:
The black hole of my brain injury released some new information. Lately I have been experiencing this more and more…snippets of old knowledge and experiences pop into my head. I wlll write a blog post of what I can compare this to in hopes that it can help fellow TBIers but their experiences into words.
So my new baseline was how awesome I was doing before feeling cruddy in January. This means that until my stressors on my body…the blocked sinus thingy will continue to put negative stress on my hydrocephalus until it gets addressed. So in the mean time I will experience and increase sleepiness, tripping, falling, dropping (or accidentally throwing items), weird walking stance, numbness, tingling, head pressure, pain, and cognitive decline. I have been having a hard time figuring processes, and steps to getting things done again. Decline in remembering what to do with Adobe Illustrator again. I have been saying the wrong words for things more and more. For example for the last month I have kept telling the boys to put their laundry in the dishwasher.
You know that gets old quickly when you have two parrots who are like okay and start to put their dirty laundry in the dishwasher. My kids are jokers I say…but when I am stressed mentally with the weird symptoms that have popped up in my life, my sense of humour is greatly diminished. Actually irritability, and anger have popped their dragon heads up again so much that the boys have noticed. They joke that driving with mom is like “beepidty boop boop beeep” with the added family finger.
I have been reassured that symptoms, although scary will go away once the stressor is fixed.
Let’s hope this happens quick before my control and filter completely disappears and I actually tell off a stranger who is pissing me off.
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.
I have not written since June 21, 2016 after my Endocrinology tests. There was not much to write about. Okay I admit there has been plenty to write about. My two little energy pills twice a day has allowed me to use the hash tag #summeroffun. I have had the most energy since December 2011. We did kayaking, paddle boarding, walking, easy hikes. I stayed up later than ever. I even painted two walls in the house spur of the moment. Don’t get me wrong these were not all day events. Maybe 1-2 hour activities with a break then a rest and then another activity then break and even a third activity that day. It has been amazing on that aspect but I was still feeling fatigued and weak. I still was losing weight for July but from August 10th to today I was on holidays where I ate more than normal with big breakfasts, large dinners and plenty of junk food in between. I drank a lot too…those empty beer calories but those beer taste so good sitting on a deck BBQing. From that unhealthy summer binge at least my weight was stabilized and gained 2lbs. When I went to for my follow up Endocrinology appt. on August 22, 2016 I weighed 126lbs.So from undiagnosed hydrocephalus to brain surgery on September 4, 2012 20 to August 25 , 2016 I was peeing every 15 minutes. I really have no idea how many times I would go pee because it would be in a sleeping pill delirium. I know always at least 6 or more times. I would get about 2-3 hours sleep and then the pee train would start. But hubby says that I go even then but I am most likely sleep walking and don’t remember. So in reality I was getting very little sleep every night.
My peeing was overlooked. I mentioned it to my neurosurgeon more than once and he just said I should drink less so I did. With my brain injury, I was not self-aware of how bad my peeing still was after surgery. I had other things going on too such as neurogenic stutter, getting my right side to cooperate, feeling confused and trying to overcome daily chronic pain.
So I think last summer when I was camping at Elkwater Park I got really dehydrated. So I made it a priority to drink more water. I needed to get in my 8-10 glasses then an electrolyte powder and more water if out walking or in the sun. This is when I first noticed my peeing all the time. This lasted until about December where I couln’t take it anymore so I cut back my water consumption and went to myt GP. Between December 2015 until April 2016 I had many blood tests for Diabetes Mellitus (DM) and each one came back negative.
I had begun to lose weight. I had no appetite and was nauseated all the time. My sides and belly would hurt. My hair was falling out all the time and I had very dry skin with a persistent rash that would not go away. I had only enough energy to take kids to school, crawl back to bed, sleep all day only to get out to pick up boys. Libido was non-existent. I would wake up each morning feeling like I was hung over. I was going to the bathroom so frequently that I was going through at least one of those double toilet paper rolls every day.
Ouch as my nethers began to feel sore and every time I wiped it was like sandpaper. My life revolved around bathrooms. How long I could make it until the next bathroom. I would pee at least 4 times leading up to leaving house. If local short trip pee when arrive. Pee again at next store…followed the same pattern over until I got home again.
After my testing in June, I decreased the amount I drank even more. But nothing changed. All I can compare it to is if you are drinking with friends at a pub and go to the bathroom and they bug you about “breaking the seal and that you are in trouble for the rest of the night”.
So basically if you are drinking and finally go to the bathroom; your bladder will not hold anymore and want to go pee more frequently. So my life had become an out of control broken seal nightmare. That not only affected me but my family as well. That is until August 25, 2016.
I had my follow up appointment with the Endocrinologist on August 22. I found out that my growth hormone was great but my anti-diuretic hormone was not so great. He diagnosed me Central Diabetes Insipidus (DI). The Doctor said that I most likely acquired it from my ETV surgery. He said that all I would need to take is one spray of vasopressin before bed (maybe one during day too) and that it will work quickly. That you could tell if the meds would work within a couple days.
The appointment was positive but after being to many doctors and on a Pharmacy of medicine and treatments that did not work I was really skeptical. I had to wait until August 25th for my meds to come into town. I took it or tried to and went to bed. I woke up the next day and felt refreshed. It was still a sleeping pill induced sleep but I was only two or three times. I was amazed but still skeptical. It is the August 28th and I drove 3.5 hours without stopping to pee. It was the best drive in. A long while. I was not as tired and I was able to concentrate. My vision didn’t go blurry either. Here is to re-balancing my ADH hormone, electrolytes and no longer being chronically dehydrated. Sorry toilet paper companies….you can shove your mega packs I will be using less of your products!!
I had started this post at least three times. I had even started writing but then there was a glitch and my iPad shut down. I lost what I had written. Then I couldn’t even access what I had started. Duh…Wordpress updates created new menu layout. Crud talk about not reading what is right infront of my eyes.
So the lowdown is that for me the water deprivation test was easy peasy compared to the glucagon stimulation test. Going without food and water was not an issue. What was an issue for both test was me forgetting my sleeping pills so I was up peeing until 3 each night before I passed out from exhaustion.
I had to do the long haul water depreviation test from 7am until 4:45pm. I had to pee and give blood every hour. I was given a saline solution interveniously around 3pm because I wasn’t dehydrated enough. The weird things throughout this testing process is that my urine didn’t darken and that the amount didn’t decrease. So what did I do all day? Sleep mostly, my vision was acting a little wonky so I really couldn’t read. I played unblock me and look at my pictures maybe for ten minutes each hour. The lights in the room were out for most of the day becausee my head hurt like hell. Chris came for 4:30pm with two smoothies that I had to wait to drink until my last pee and blood sample time. Then I drank quickly and had to wait to see if I had some sort of reaction. I then had my final blood pressure test 113/75 and was sprung for the night.
The next day was awesome. I arrived before nine and led to a nice warm room with two unique reclining cushy chairs. I was given warm blankets and heating pads. It was like being at the spa. Then I was set up again to be able to draw blood again. This time it went really quick because we used heating pads to warm up my arms so my wobbly evasive veins cooperated. I felt that this was going to be an easy test like yesterday. I was injected with Glucagon. The nurse warned it would hurt or burn. No didn’t feel that and was positive that all was going well. I dozed off. I felt my arm getting eaves and then of course about an hour after the injection I had to go pee. In the bathroom I felt a little off. When I got back the nurse took more blood and commented that I didn’t drink that much water. I told her I drink much because I didn’t want to be sick to my stomach. Then it was like a switch, I felt really sick to my stomach. Chris grabbed a garbage can and the nurse came running with one of those tiny paper containers. Thank goodness there wasn’t much to come up.Then I broke out in a sweat and I got dizzy and really hot. We had to get all the blankets off and my hoodie off with keeping IV in. Then I felt like I had to got the the bathroom. The nurse and Chris tried to stand me up but I couldn’t stand. The stomach cramping started and I started to shiver. The bathroom was not a priority anymore. I curled up in a ball and was covered in blankets again then I passed out. All these sick things didn’t happen over a period of time but instead minutes. I felt like I was hit with a bad stomach flu or food poisoning.
When I woke up I felt better but tired. The test was almost over so I guess I was out for a couple hours. Then the last blood draw down and was allowed to eat. I ate what we brought two Apple juices. I really had to go the bathroom but before I could stand I had to get my blood pressure taken again. It was down to 90/50 so I was not allowed to stand. I was offered a bedpan that I declined. So I waited and continued to eat more food. After I ate two packs of cookies my blood pressure was taken again. It had risen enough hat the nurse let me stand but accompanied me to the washroom. I started to get the shakes. When we got back to the room I had to stay a bit more then had my blood pressure again. When she took it again my blood pressure had risen to 110/70 and I was able to leave. Chris had parked down the street and it took a bit of slow walking to get there then we went to a nearby baker to get treats and went back to Medicine Hat.
My stomach felt sore and I had even less of an appetite for almost two weeks after. I couldn’t even stand the smell of meat. I have not received my test results. One of the tests had to be sent to the Mayo clinic in the US because there is no labe in Canada that does the testing.
In the meantime my brain injury Doctor prescribed me a short term/acting energy prescription that has been working. I had the best birthday in four years. I have been on it for two weeks and this morning I needed. A body rest day so I didn’t take any pills.
Here is to hopefully long term positive solutions!
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.
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
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.
I 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.
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!