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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Hair Raiser

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After a year of burned mucus membranes on my scalp from SJS or Stevens-Johnson Syndrome, my hair is currently staying in, growing and healthier than what it was.

It really feels nice to notice that my hair doesn’t look like straw or is in clumps clinging to the back of my sweater. My boys currently have longer hair than me and they keep saying “mom…grow your hair…it would look so nice!”  Believe me I didn’t want to cut my hair short, I had to. My hair was clogging the drains when I washed my hair. I hated to  shampoo my hair and my fingers would be covered in my hair. I thought I was going bald so I cut it. I am extremely fortunate, that it appears that I do not have any missing patches on my scalp (from badly damaged folicles). However, I do have crazy curly hair so if there are minor spots, my hair covers them up.

It is so funny because for most of last year. I went everywhere with a headband on. It was just easier to just to wear a toque in winter and a headband the rest of the year to cover up the falling out wieird growing back hot mess of a head I had.

I really didn’t thing anything of my so called fashion choice other than I looked like I was really old or maybe I just felt really old or most likely I felt a lot of both. this is what I looked like 95% of the year: 1439575455025

To  September to October above my hair has really started to grow. Yay! 20150718_202519My hair has always been my identifier. I am not a make up gal & my hair thank god is curly so I all I really had to do in the past was just put product in my hair and run my fingers through it. It was easy peasy. The hair falling out thing was really a little freaky because it does not always grow back. I really do not know if I would have been up for a wig especially since I wear my tinted glasses that age me to a retro 70’s person. I am pushing my limits on cloudy days with going with my regular glasses or contacts too.

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My skin is still really sensitive to different clothing fibres, soaps, paints etc….It still get blisters. I had a reaction around my wedding ring and it took my skin almost two months to heal. My back goes from no irriated to having my whole back itch, burn and blister quickly. My shoulders and upper arms still flare as well too. There is not much I can do but wait it out and take antihistamines, and use my prescription pain/anti-itch salve.  The salve is sticky and smelly so it is not much fun. Living in a very dry climate does not help nor does the changing of the seasons as well.

I am hopefully going to get to see a dermatologist soon…maybe in a year or so on the waiting list. who knows. But overall I think most of my symptoms have disappeared or have settled for a bit. I am hoping that the oversensitivity will ease soon too!


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Fatigue Tips – my ass

images (2)I remember when I attended a support group for ten TBIers like myself. The support group was run by two to three employees who basically ran it Nazi style by shoving their agenda and information down our throats. Instead of facilitating. It was interesting to be a part of in slightly sick and twisted way. I felt like it was a train wreck and I couldn’t look away. I really hated going as it was kind of embarrassing to sit through. It allowed for very little discussion and information was spoon fed to you like you could not understand. It felt that there was a us versus them scenario and we were the broken “thems”.

However, I know one of the facilitators and it was run with the best intentions, but from the intentions of a “normal” person. Because this person worked at a Brain Injury Rehabilitation place, she should have known that brain injury does not affect intelligence but instead affects other cognitive factors that can make us seem not intelligent. It felt like we were not respected as adults.

I remember that that one week of the eight week program was about fatigue. It really irked the information fed out was that fatigue was our fault because of exercise, motivation, eating, and sleeping habits. The suggestions were all well meaning but fucking utterly useless and made me angry that Brain Injury workers had nothing useful to give use. Everyone went very quiet in the room and looked down. There was anger, defeat and pure frustration oozing from everyone. I really didn’t like the suggestions because each one was more of an assumption that it was your personal fault for the fatigue and you were not working hard enough to fix it.

For example, you are experiencing fatigue because you do not exercise enough, eat healthy enough, do not have proper sleeping habits, not motivated etc…. We were not all newbies with our TBIs we have tried all and continue to try to use all the techniques but still are experiencing issues. When I asked about medicines. We were not encouraged to discuss what meds or techniques have worked for us, the TBIers, I was not able ask any of my fellow warriors. We were told that we had to discuss anything with our doctors. Doctors are human and sometimes at a loss too so hearing what other doctors have tried with other TBIers is very important.

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My fatigue level ranges from moderate to the extreme fatigue all the time, even with my awesome new meds. It is no fun, but mid day rests are still mandatory in my life. My energy levels fluctuate throughout the day like anyone else’s but they may wane and fluctuate way quicker.

Fatigue is defined as:

fa·tigue
fəˈtēɡ/
noun
noun: fatigue; noun: fatigue detail; plural noun: fatigue details
  1. 1.
    extreme tiredness, typically resulting from mental or physical exertion or illness.
    “he was nearly dead with fatigue”
    synonyms: tiredness, weariness, sleepiness, drowsiness, exhaustion, enervation,languor, lethargy, torpor, prostration;

    war-weariness
    “his body was slumped from fatigue”
    antonyms: energy
    • a reduction in the efficiency of a muscle or organ after prolonged activity.
    • weakness in materials, especially metal, caused by repeated variations of stress.
      plural noun: fatigues
      “metal fatigue”
    • a lessening in one’s response to or enthusiasm for something, typically as a result of overexposure to it.
      “museum fatigue”

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TBI fatigue is often very hard to manage and is often a long-term affect when adapting with a TBI. I still have a hard time dealing with fatigue. I loath being fatigued. I really could not explain it to anyone until a friend of mine with Lupus posted The Spoon Theory by Christine Miserandino at www.butyoudontlooksick.com. It is the easiest way to explain to anyone about chronic conditions and fatigue.

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The normals methods to help with regular fatigue such as exercise, cutting caffiene, cutting sugar, eating healthy, and reducing stress do not work for TBI or other chronic conditions. I was going to write down my own list of suggestions to help minimize fatigue in daily life, but I found a great blog post by a fellow blogger and TBIer. Simple Tips to Manage Fatigue with Brain Injury, Memory Problems, and Chronic Illness to Self Rehabilitate

I am will not waste my precious energy re-inventing the wheel when this article has some awesome advice.  Cheers to the days with extra spoons and Boo to the days where you boom then bust.


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Kicked to the Curb

After December’s nasty endless SJS flare, I thought that moving at the of January would create complete havoc with my body. Instead January was a reprieve except for the endless hair loss. Thank god for lots of curly hair. It was becoming normal for me to wake up with pillow full of hair or that where ever I would go there would be kelly hair bunnies everywhere. The hair shedding was worse than all three of my animals combined. It was not like having a stray hair on your shoulder, but I would have enough hair on my shoulders and back to make two chewbacca dolls (one for each shoulder).

In January I did a bit more research and read a couple books on health & wellness. I looked into revamping the wackload of vitamins my neurologist prescribed me for my continuous head pain; head healing and head health. I started looking into optimal daily dose (ODD) rather than recommended daily dose (RDD)

I found out that my neuro had basically had me taking ODD levels for my vitamin E, super B-complex, Calcium, CO-Q10 and Magnesium. I just ramped up my Vitamin C and Vitamin D. I also read that some neuros are recommending between 6-10mg of Omega-3s per day. I am not a big fish eater so pills it is. I gag at these pills and hat the the burpy after taste every night, but I have been taking 6mg a day.

We are almost done February and the time as flown. I have only had one minor flare with skin & scalp sensitivity/burning and raw inside of mouth that lasted for about a week. Chris had to remind me to take benedryll at first sign of flare when my lymph nodes swell up that my throat feels tight. I am glad he did because I think we caught the flare in the bud and because it was short-lived I didn’t have to take a trip to the ER or start prednisone again. Even my hair falling out has started to ease.

I hope that trying to eat a bit better, take my vitamins, using my essential oils, taking my regular medications (down to only two – yay) will continue to aid in my recovery, increased energy and physical well-being.

I have been a part of the SJS community on Facebook and have been getting updates to other peoples’ struggles with this horrible reaction. I have watched videos on how SJS progresses to TENS and I am so grateful that my rash go beyond that what it. I am glad for not having to be treated in a burn unit or my eye sight gone (just minor irritation and overly dryness). I only have a few scars on my feet and ankles from blisters that took months to heal. I may have a couple scars on my back but I am unsure. I really had no energy and was extremely fatigued from September until January.

I am oh so grateful that my bout did not turn into TENS. I am grateful that both myself and my family have been strong through this blip.

However, it is high time that I kick this SJS out of my system. I would like it to leave now, not ever ever ever comeback and not to have anymore flares – please and thank you. And please educate before you medicate! When there is a side effect of a rash it means that it can potentially be SJS!

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RAM needed Please

I must say that my memory has always been somewhat sketchy – always good for work but super bad for birthdays etc…. Then the sleep deprivation of having kids added to the mix so it wasn’t until probably about a 1.5 years ago I had noticed it getting worse.  Thank goodness for my iPhone.  I would use it for everything.  I would set my calendar timers, used the note feature to remember everything.  Then it got to the point where, I would forget where my phone was, not hear the alarms, forgot that I heard the alarm and start missing important work, school and family stuff.  I stopped using my phone and went to paper lists.  Paper lists for everything. This sort of worked for a bit too then  I would make a list for groceries and forget the list at home.  Then I would email myself stuff, only to forget about the emails.

I would make a list at work of projects that I needed to do and then forget about the list.  I would miss deadlines, forget about ongoing projects and even lost a client for my work.  Yes I felt bad!  At work, all I was doing was apologizing.  I was on the verge of getting fired – nothing I did was right anymore – I no longer was fast, accurate and field ready.  I was alive but not functioning mentally or physically anymore – basically a useless tit! I know that some people at work thought I was acting the way I was because I didn’t want to be there, I was dragging my feet on purpose. I had warned them for months that I needed help because something was wrong with me but no help came. I did not comprehend how badly I cheesed off some people at work until basically now two weeks after surgery.  I remember that at the beginning of August when I handed my medical note in at work and said I would finished the project I was working on.  I completed that and then left to be on leave.  After I received my ROE, I checked the website, because I knew they were doing changes and wanted to have a look, only to discover that I was no longer on the employee page.  I couldn’t understand why and I still don’t know why completely; but oh well that is life.  I had loved my job and the main owner of the company.  I loved how the company was originally built on a family feel approach rather than corporate entity.  I have no idea if I will be able to go back.  I know that at the moment if I had to go back to work I would be a disaster again.  It was membership time with CAPFT and I had to decide to renew my professional status for 2o13 work permit.  I had to decide if I be a practicing or non-practicing member. I registered as a non-practicing member for now.    I am not negative or upset or frustrated with anything that has happened, but now I see the situation from a clearer headspace.  I am accepting of where I am today and know only positive changes will happen with time.

I am no longer in a fog and physically I am getting stronger and stronger everyday.  I am working my brain by writing, and when I talk no one would know that I have some RAM and a few short connection issues.  My short-term memory has a lot to be desired at the moment – BBQ caught on fire – oops about those burgers; Fill bathtub and forget about it; kids request food/drink – oops just to name a few.  If you want to have a conversation with me, better get my full attention or you will have a one-sided conversation to yourself! Even if I have responded I probably didn’t hear you or processed what I responded to. I feel that I am way better than before the surgery, but still have a ways to go.  I know that when I look at words that I have known for a long time I question if they are spelled correctly because the word just doesn’t look right.  I used always ace the reader digest word definition quizzes and now…well…I tried.   I know that it gets worse as I get tired or when I get stressed or have too many things happening  at once.  I just need to step away and recharge when I feel a little overwhelmed.

I am looking forward to my brain schooling next week, and I know  that it will help me out.  So I will fill up my backpack just like the kidlets and head of to do a bit of ol’ book learn’n! I am opening up new doors  and allowing  for change and opportunities to come my way.

Raise a glass of fizzy water and toast to new beginnings!