Howdy Hydrocephalus

Understanding my unique gyroscope


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One Size Does Not Fit ALL!

It has been a while since I wrote. After the botched Botox and uncooperative Nurse, I had an appointment with my Dr. From the brain injury clinic at Foothills. I asked if I could she could send the migraine protocols that she used on me over to the nurse who did my Botox. I explained that she put needles in my jaw for TMG and in my cheek below my eye. I also said that they didn’t use as many needles and I was in extreme pain so I took desperate measures to get Daith piercings done.

She told me she could not control how the clinic did their Botox for migraines and said I should come back to the clinic in Calgary. I agreed.  

Yesterday I had my appointment with her. I told her I went to see a local MH neuro who basically was shocked that I was not 60 or 70 because I was too young to have Hydrocephalus. Then he asked me to explain how I got hydcrocephalus as he was looking into my eyes, and doing my reflexes. He then interrupted me and told me he really didn’t want to know, but he was just distracting me so he could do a quick assessment. Then He asked me why I was seeing him, I said I didn’t know. He said that Dr??? Sent the referral. I said I didn’t know who that Doctor was and then he said my GP’s name. (SIDENOTE: Oh it was from January when my head was in extreme pain and my Hydrocephalus was acting up due to the sinus thing. I wasn’t the most happiest patient at that meeting. If only the Dr. Said to me at the time that no worries your symptoms get extremely worse when you have a sinus problem instead of saying no nothing was wrong with me just a sinus issue. ) The MH neuro then said that he could not treat me for pain, but another local neuro may be able to. He then asked if I had seen a psychiatrist. I said in hospital, I had neuropsych tests done twice. He said “that is psychology” and brushed it off and said to me that he is referring me to a psychiatrist because I look anxious. I told him I was anxious because he was a new doctor that I had not seen before. Meanwhile, I felt not listened to, pushed off and the typical MH dr. Response of I am not going to treat you because you are not an easy cookie cutter type of condition. So then I asked him…what he specialized as a neuro in MH? He replied that he had no specialty because MH did have any. So then I questioned what did he do as neuro then. Well he was not to impressed and really just gave me a brush off type of answer.

My Dr. In at the brain injury clinic said stop going to these appointments. I told her that I didn’t know who set it up. I thought it was apart of me trying to find local Dr. To take over my case management and begin to treat me. I told her I didn’t realize it was from that Dr. I saw in January. I told her that yes I was upset, but I was scared and in pain due to not only the sinus thing, but also being off the Pristiq for nerve pain (but didn’t  know that at the time) so that the Dr. Basically set this up so I could see a Psychiatrist and get my crazy all taken care of. She told me that I did see a Psychiatrist at Foothills more than once with the testing and they didn’t find anything crazy other than being anxious and slightly depressed at the time.  She then shook her head and said that having Too many cooks in the pot just mess you up so now I will continue to see her ever three months. She will make sure I am on the right meds and get me the help I need. I am so blessed and grateful to be under her care full time again. She has been the best Doctor I have seen since this whole journey began. 

It is so true having that one Dr. Who cares about what he or she does and cares about their patients makes a world of difference. It is the Doctor who wants their patients to become as good as they can and not just say well you hit the two year mark…this is a as far as you go. It is the Doctors who DO NOT provide alternatives, different approaches, resources, empathy, caring and only see patients as a ten minute time slot that keep the TBI suicide rate so high.  TBI is like any other chronic illness, it is lifelong, uncertain, often filled with confusion, isolation, limitations in mobility, sleep, cognitive, executive functions and a wide array of other physical, emotional and financial challenges. Pain and fatigue are the rulers of your day. Pain and fatigue can make you bed ridden for a few hours, to a few weeks. This can affect your mental well being because of continually letting friends, family and work down.
The downside of these caring and compassionate and driven Doctors are that they are far and few between. That because they are empaths, you can see the burnout in their eyes and their actions. My Doctor has shown these signs for the last year.  You can see it in her eyes, how’s she holds herself and the lines etched in her face. I only hope that there are resources available for her so she does not leave this career where she is amazing!!!!!!!!! Or that she decides to put herself on autopilot and not care just so she can survive the long grind until retirement. 

How can I help her? We usually bring a gift card or some sort of treat for her but I forgot yesterday.  Any suggestions? Has anyone else experienced such a great Doctor but see how the corporate pressures of trying to get patients treated in their local communities is hurting him or her.

Please let me know. I think we all should try to rally around the good Doctors who take their profession to heart and string up those shitty cookie cutter doctors who really cause more problems than solutions. How can we make the Canadian Medical system better rather than see it become worse and worse.


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Back on the writing bandwagon!

images-8It 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.

fb_img_1443293628775My 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.

images-5So 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.  

images-2You 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.

kitty-fingerI 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.

 


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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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Look’n Good

images (5)I saw my very good friend today and she said that I look tired but very good. I had to agree with her. I am looking but feeling exhausted. I am so dragging, headpressure and pain. Not enough to get me completely out of the game of life but enough that I know it is there. This feeling is like an annoying hangover which would be okay if I had earned it from the night before.  Nope just get the feeling. Lucky me.

Last Monday, I had my neuropsych assessment. This is the second one I have had. The first was when I was inpatient rehab when in Unit 58.  It started at 9am and went until 12:15ish. I was exausted and felt sick to my stomach after. It was an interesting series of tests. I had to laugh at the peg test and the grip test. Oh yeah…lacking coordination and strength on the right side…it was quite amusing as I was doing it. I like the block test where I had to do patterns. The attention and memory tests were sucky but I plodded through everything.

downloadI then went to cafeteria to get lunch. It was so busy that I only sat there a few minutes and decided to go check in to sit in waiting room where it is usually quiet since I had an appt. with my Physiatrist for 1:30pm.

I check in; walk down the hallway where the waiting room nook was empty…score!!! I settled in and tried to eat my sandwich but I still felt sick to my stomach so I stopped. I was sitting there with eyes closed, relaxing in the relative quiet of a busy hospital when a person comes down and he is loud. He is another outpatient like myself. However, noise is not an issue for him but being loud, obnoxious were some highlight characters he exibited. Then he said he was there for his anger…while stating that the police are  corrupt and he got his injury from police when trying to arrest him. OMG…I think that I am going to lose it and police might come arrest me becuase he will not shut up; I am tired; feeling like shit and trying to really be polite. I do this for forty minutes. Finally I get up to go to the washroom and a young intern doctor motions to me as I come out that the escape route is to the left. I explained that I need to wait and the look of pity was did not go unnoticed. Then he gets called out…peace & quiet again. I shut my eyes and sleep again.

When it is my turn to go in, we talk about how I am doing. I tell her that there is no way I think I can be a sucessful counsellor, I don’t think I could really listen to people all day. We check go over meds and then do the Botox. Chris was in room with me by then and it is his first time waching the process. I guess when it goes in, the skin all inflates and there is a big bubble. The needles never seem to go quick enough. I even yelled out once or twice. 20151120_094254I even ended up with bruises on my scalp & forhead this time.  So the remainder of last week and still this week has been a little uncomftable.

The Psych called today to give me a rundown on my results. He said that I had improved in all categories but memory went down. He said that if I want to go back to school or re-train, that would be best at visual and hands on. That is good news at least. Options. I don’t think a Masters is in my future anymore, but I have a couple other ideas in the fire right now.

The memory going down is a concern! I have been experiencing other potential hydro issues but have been ignoring them for the last couple months but today I ended up sending email to Dr. to see if we can get a head scan. If there is another issue and I need to get an ETV again, I would rather do it sooner than later.  Below is a list of common symptoms when your hydrocephalus is acting up or things are not flowing right:

Older children and adults may experience different symptoms because their skulls cannot expand to accommodate the buildup of CSF. Symptoms may include headache followed by vomiting, nausea, blurred or double vision, sun setting of the eyes, problems with balance, poor coordination, gait disturbance, urinary incontinence, slowing or loss of developmental progress, lethargy, drowsiness, irritability, or other changes in personality or cognition including memory loss. taken from.Hydrocephalus Fact Sheet


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Fall Follow-ups

IMG_0794.JPGWe went to the Brain Injury Clinic on Oct 22 at Foothills hospital in Calgary and Monday, Oct 27, was a general neurology appointment at the South Health Medical Centre. I am so lucky for my chauffeur, Chris. He has logged a lot of kilometers on his days of to haul me around. Not only does he have to get me there, he has to keep the kidlets occupied while I have my appointments.

Foothills hospital was a zoo. I had to basically tuck and roll out of the vehicle as traffic was lined up and there was no parking. Chris & the boys drove around the parking lot for 20 minutes and almost had to pay for not even the privlege of parking but for being in the lot for too long. They ended up driving down a hill past the hospital and finding a park to hang out in until my appointment was over.

The brain injury clinic was quick. Because I am still shedding from SJS there is no meds except I did have the 40 shots of Botox in my head. Holy hannah the burn, pop of skin and burn. You think I would get used to it but not this time. I think the stress of boys not getting parking made me tense so it felt worse. I tried to do big deep breaths but It didn’t help too much. I needed to focus. At least the Dr and med student were super quick – bang, bang, bang – head and neck felt like a construction zone. No pain no gain – right?!?

I am fortunate for the very good care and doctors at the clinics. They know we come from out of town and usually try to see us early. They even offered up free parking passes. The doctors and staff in the clinics show true warmth and caring. I feel very fortunate to have my clinics at these hospitals. I am happy with the open mindedness, treatment options and perserverance to try to find a combo that works for me and my brain.

At the neurology appointment I found out that my right ventricle is finally shrinking – yay!!! The neurosurgeon couldn’t guarantee any ventricle size changes after the ETV in 2012. The neurologist was very happy about my MRI results and that in turn has made everyone else happy too. My neurologist wasn’t happy that I was using Tylenol more than 15 times a month. It has been the only pain reliever allowed for me since Steven-johnsons Syndrome (SJS) and I can’t say if it did anything for pain levels or it was more of a pacifier that I was able to take something in hopes that my pain would eventually go away.

So what’s the big deal about over using Tylenol more than 15 days a month is that it can create nasty headpain called rebound headaches. My neurologist evan said that the packaging should have that information on it but doesn’t. So here I am freshly Botoxed (waiting for it work its way in) and now no Tylenol and trying not to let the stupid pain in the head and body get me down. It has been a rough week but I am surviving. I just starting putting an essential oil on my head that is supposed to help pain. If you keep re-applying and not waiting for pain to escalate, it works. I have heard that from other people with chronic pain journeys who use oils to help – don
t let pain escalate re-apply often. I may have to get a straight bottle of the essential oil in the blend I have to get full effect.

It will be a while before I can try a new med – one with little or no side effects other than lowering blood pressure. I need to get down on the prednisone…another 5 weeks or so depending on flares.

When you have chronic pain you are willing to try anything beyond traditional mediicine to help. I know when I do my hand reflexology on my self it works. You have to keep an open mind and find what works for you – especially when options are limited.

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A Mother’s Plea

This is a story I found on the Forbes site and I thought I would re-post. In the United States they have Hydro walks for fundraising and education. I am not too sure what happens here in Canada. Most people look at me with a quizzical look when I say that I have hydrocephalus.

A Mother’s Plea

Heres to hoping to spread the word and find better ways to deal with this condition.

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Highlights of a Brain Injured Summer

The road trip from Medicine Hat, AB to Richmond, BC is about 1400km. Not too long. We had travelled it as a family a lot before my surgery in 2012. Before kids, we would do a trip this distance no problem. Before I met Chris I would do a trip similar in one day. Now it is a multi-day adventure! I brought along a tent that i thought all of us could fit into….two adults, two boys & two dogs. Nope. Driving to BC the boys & one dog slept in back of minivan and the rest of us in the tent. I Corrected situation for our trip back by purchasing a new tent that is so big that it could house all of us, our luggage & probably a small country as well!

So not only I had a misperception glitch with the size of the tent, I somehow let it slip that there were four people in the family and insteadI brought three pillows and three light sleeping bags. We made due as the boys had their polar fleece blankets (thanks Sara for those christmas gifts!) We didn’t freeze but came close the morning in the mountains where we could see our breath.

The brisk morning in the mountains, I announce to everyone that I am going to drive. It is early morning and I had lots of energy. I know the vehicle or at least I thought I did. We get going and i try to put the cruise control on. i keep pushing a button and the speed doesn’t stick. I slow down…I speed up & try again only to slow down…so I sped up. Not only are we slowing down & speeding up but it is on a winding road with traffic. i am trying to find the right button, not get us killed, not piss off the drivers behind us and listen to Chris at the same time trying to trouble shoot why I can’t get cruise control to work. This wonderful smooth driving experience lasted for about 30 minutes until I have to pull over because someone in the back voiced that they are going to throw up. I safely pull over; we all minus the dogs get out. To the relief of everyone on the trip, I give up the keys.

We planned on going swimming on way to Vancouver, but it wasn’t until we were going swimming that i realized that we didn ‘t have any towels with us. Oops – drip dry everyone!

I thought it was the longest road trip since my surgery in 2012. My mom insisted that the dogs had been at the house before. I thought she was nuts. Apparently halfway into the three weeks of being in BC, and after being cued by my grandmother when in Campbell River that Yes I did visit last summer and this summer too!! Okay where did that experience go. Apparently into the void of jumbled thoughts until it was recalled with an event that i remembered. That is when the pieces started to fall into place.

I spent seven hours fighting with a hard drive that wasn’t being recognized by my mom’s computer. I cursed her old technology and tried downloading drivers etc…only to be outwitted by a cord change. I was using the power cord USB instead of the computer transfer USB. Computer technology 1 me 0.5 as i did get those 800 images transferred safely to my external drive and off my phone and camera!

We decided to do a family trip to Bellingham, Washington. Six in the minivan, idle conversation, radio on, road blurring by – big box stores, the mall & I am so proud of myself. I made it to lunchtime. I only had one little overhwelming incident – I couldn’t decide on anything for the boys so I just piled it into a cart and tried to find them.

We decide to get lunch and unintentionally left everyone hanging in the food court for an undetermined amount of time. I honestly only wanted to check out one store but got distracted and wandered aimlessly in and out of stores being slightly overwhelmed but proud of myself that I was actuallly shopping in a mall alone. However, I did not take into considereation the 5 other people waiting in the food court – oops!

After I was found intact, unharmed & with shopping bag in hand. I appologized to Chris. As we walked towards the food court Chris asks if I was wearing my dress inside out. Ummm…I look down and I am! Apparently all the visual and noise stimulation did affect my ability to dress myself in the change room correctly.

I am spending every night reading again, but I am still not remembering very much. I am frustrated with that. I am happy for finally clarifying a goal. I was all ready to dive right in, but Chris and his good reasoning stopped me from doing any school for now. My head pain level started to increase and become a steady daily reminder that the Botox effects were wearing off. I didn’t let that or my constant feeling sick stop me from trying to give the boys a great trip.

It irks me to no end when they call me lazy mommy for sleeping. It is hard to keep up to them all the time and be able to do stuff. They are too young to realize the implications of everything but I hope that when they are older they will understand. I hope to still get more and more energy as time progresses. First goal though is a better brain!

So after three weeks of laughter, glitches, laughter again. The only thing that can get you through a road trip and an adventure that the family is on is laughter and rolling with the punches or lack of towels, sleeping bags, coffee etc! Heres to a great second half of 2014 with more improvements with 40 more Botox shots & cognitive training!