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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Daily Chronic

download (1)     Yup I am a daily chronic migraine sufferer. That means I basically have a moderate to severe headache 24/7. It really does just suck. It is not just a headache. For me I can get an aura of losing vision, dots or zig zag lines. I become even more light, noise and smell sensitive. My right eye starts to act up and vision gets all funky. My left eye and my right eye will tear. My right side gets all numb and tingly. My perception goes and my balance is also affected. I often feel sick to my stomach. The headaches range anywhere from a constant 5 until a 8. I never say ten because that on my scale would mean death. I am fortunate to be a red head so I have some freaky weird higher than normal pain tolerance. However when my head pains spikes to severe, the pressure from inside my skull always feels like it wants to blast out from my head. It gets so bad that my scalp and hair even hurt. All I want to do is sleep, but at the same time I can not sleep because it hurts so bad. So I breathe, close my eyes; try to read; try to surf the net; try to just be. For two nights, it has been that type of night. Last night I had red wine to help relax me so I could go to sleep easier.  However, Friday night meant that I wait out the pain until I pass out from being tired. I have no idea how late I was up friday night, but it was long after I put toothfairy money under my son’s pillow at 1:00am.

There is no one answer to get this beast of a life killer under control. We have been struggling to find an answer for three years. There is has been much trial and error to find the right combination with the least amount of side effects. Basically I am a guinea pig. This is not a quick process. After brain surgery, I was on at least 12 different meds at one time. I was an over medicated zombie. We had no idea what was working and what was making it worse. So the neurologist and us decreased and came off of all but one medicine. Then we started adding some back in. It takes time to see if works. First you need to tirate up to a working dose. This takes time. Then you stay at a maintenance dose for at least two/three months. During this time you determine if you can live with the side effects. If not, you then tirate down and start all over again. It is not only emotionally draining as you get your hopes up that this new little pill will be the miracle drug, it is also physically draining as your body may react in weird ways such as muscle aches, pains, rashes, weight gain,fatigue, low blood pressure, fainting, dizziness, bloating, constipation, nausea, sleep disturbances, depression, anxiety and numerous other not so fun stuff. Basically you are put through the ringer. First off you do not have any pain-free or very little pain-free days and then you don’t know if what you are taking will be worse than the pain itself.kelly dec 2014 568

To treat this you take many different drugs from many different drug families. You change your diet, try alternative methods, take vitamins and basically try anything that will help you – even if it is a minor way. We have been trying to find a preventative that works as two found triggers other than the hydrocephalus induced were weather and hormones. I was completely out for the count for a minimun of 18 days per month but more like 22 days on average. That meant that life really just sucked poop.

We started with a variety of antidepressants because I was experiencing high anxiety. I was given Prozac – zombie to Zoloftt – manic, Amitriptyline – angry zombie, My body decided it like Pristiq.

This did not solve my headaches. I began to track my headaches to find a trigger. I tried various diets to see if they had any affect as well. My neurologist put me on a regime of vitamins. I don’t know if they have any affect at all but I continue to take as they are all good for me.

We tried calcium channel blocker Verapamil. This did not work well at all with my already low blood pressure. I could barely walk down a hallway without almost passing out. I also didn’t appreciate the dizziness.

Next we tried anti-seizure medication. There were plenty of these meds that I tried. All with not very successful. Topamax or often lovingly referred as Dopamax made me dumb as a post and my neurogenic pain went crazy. Gabapentin, pregabalin and lamotragine are the only ones that I remember.

images (2)The most successful treatment so far has been the use of Botox. It doesn’t work 100% and we have been trying to find a combo that works great. We started last year and after the first two weeks, there was a success. I was not bed ridden for most of the month, but able to get up and do stuff. Full blown migraines were not as bad. We did find a combo that did appear to work together. It was Lamotragine. I was able to get out and be active. all was going well until we hit the seven week mark where my body decided it didn’t like the drug and responded with Steven-Johnson’s Syndrome.

Since then we have tried Beta-Blockers which have been horrid. They decreased my blood pressure so much that I could barely walk up stairs. My hands and feet were so cold that they were purple and all I did was sleep. Plus they never worked really anyway.

imagesSo why the long history of drug trials and errors. Well my Botox bascially wore of at the beginning of the first week of April and my appointment to get re-shot up is May 8th. All I can say is that it has been hell. The pain has been back in full blown intensity. I am sucking at life again. I have not been to my little art studio. I was laid up in bed and thinking what could I do to end this pain. I was to the point of messaging someone for weed. But I know that the smell itself makes me sick. However, I will be bringing up that maybe there is a medical marijuana spray, pill or patch that I can try. I am also wondering if we can get a prescription to get neurofeedback so it can be potentially covered by health insurance. The only place locally that does it costs about $4,000. I am sure there are more ideas, suggestions too that I can can possibly do. I will not give in or give up! But I am hoping that the next week or two does not have crazy changing weather or winds!

Here’s to looking forward to 40 needles!


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Duckface & SJS

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Last Sunday morning I woke up with a duckface. My neck, face and lips were swollen, especially my lips. I had begun to taper on my prednisone, but apparently my body didn’t like that. I went to emergency and found out that my SJS (Stevens-Johnson Syndrome) was flaring.

I found out that I could wax & wane flaring symptoms for a long time. I not only had swelling, but my face started to get the blister rash again. Inside my mouth and tongue had blisters too. My hair is falling out in clumps & feels like dry horrid straw. I may have to get my hair cut short. Will not make any decisions like that just yet. I have not had really short hair since I was 22.

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These flair ups are nothing like before, but still a pain in the rearend.

Nothing like a good health scare to really put things back into perspective again. I had been tossing about what I want to be when “I get better” for the last year. Wasting healing energy and time fretting. I tossed retraining to be a teacher, art therapist, or reflexologist. I guess I thought re-educating would make my worth. I decided that baby steps are a wonderful thing and I will focus on hand reflexology and essential oils. I feel comfortable and happy with this decision.

The thought of post secondary training makes me stressed and anxious. Especially when I have trouble spelling words and I can’t even remember how to cite references. I think it would put too much pressure on me and my health would crap out again. I do not want this to happen again. I want to be healthy, strong and happy. I want the same for Chris and the boys. I spend time with my family and have life adventures rather than book adventures. There is so much on my bucket list and I plan to be a part of this world for a long time to come. Being happy is number One! It no longer professional title or the dollars one makes.

I need to take the time to get my energy back. I am still fighting with acceptance that I need two naps a day to look like I am a together person when people see me. I just need to build a bridge and get over it and accept that this may be the way it is for a while. And if I push too hard, I will begin to back paddle. I don’t want to back paddle anymore.

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Two Years Post Surgery

My first year post surgery was a blur with more valleys than peaks. The revovery more erradic than steady. It was filled with frustration and limitations than major successes. However the first year was not all doom and gloom. The ETV stuck and with only two glitches was free flowing great.
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My physiatrist (Rehabilitation Doctor) said that most recovery happens within the first year of recovery and then can happen slowly up to seven or more years post surgery. Although my first year did have upward progrress, the recovery was painfullly slow and somewhat muddled. However, my second year rocked the house. All that speech therapy paid off. My processing speed picked up allowing me to understand and respond quicker. This in turn with all the speech therapy contained my stutter. All those practiced speech techniques finally come more easily so the beast barely shows its head unless I am sick or very exhausted.very tired.

Most of my ice pick, migraines have been alliviated with the use of medication and Botox.

My right side is still weak, but getting stronger with my swimming. I let go doing my old exercises and have taken up swimming. I enjoy swimming in the swim spa because it is warm and quieter than a pool.

The new prescription Lamotrigine has done wonders for fatigue and clear headedness. I feel smart again and less like trying to walk through mud. Too bad it took so long to figure out. I swear I have been on over twenty different type of prescriptions.

My hearing and smell are still sensitive but not hair trigger sensitive. I was able to spend 1.5 hours in Cross Iron Mills (until it got overwhelming busy & noisy). Once my system gets overloaded, I begin to shut down. My right side goes numb, I get disoorientated and being to fall apart a the seams.

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I went to mental health counselling to work out all the disappointment and anger. i have let in gratitude, play and adventure into my life. I still am an over achiever and miss my old high energy self, but i do not allow the past to get in the way of my future. I am responsible for my own happiness and positive changes in my life. It is my responsiblility to not just exist, but to live my life and make a positive impact in the world around me.

I am now responsible for being very proactive in my own health care. I ask lots of questions, have Chris help me and suggest things to the doctor. I do not just take the first answer. I ask for explanations and push. I am going to be around for a long time and want to be fit and healthy not ailing.

I am feeling stronger mentally and physically this year. As always I am not like the norm and I will most likely see more improvement beyond what the docs had stated. To move ahead
My two year anniversary was like T.S. Eliot’s The Hollow Men Where it came and went “Not with a bang but a whimper”.

I litterally mean whimper and moan of fierce pain, flu like symptoms that had me go to walk in clinic on my two year anniversary. Blood & urine tests done and waiting for results when all went of the rails sending me to emergengy two days after my anniversary I was admitted to Medicine Hat Hospital with Stevens-Johnson Syndrom..

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One of “Those” People

Okay so what is a family meeting.  It is where Chris is on speaker phone and I am sitting in a room with eight other people.  There are two doctors, a social worker, four therapists, and a coordinator who are all there to talk about me.   I am sitting there listening to each therapist talk about what we are working on, what has been tested and what needs to be worked on.

First, it is physio – my “best” subject.  We are working on my coordination, balance and walk which apprently I have adapted with since last march. I have been working on going up and down stairs with my head up and not holding onto the rails. I have also been using a ball to roll back and forth with my disconnected leg.  The tingling and burning sensations are something to do with the nerves and connection between the brain and the leg.

Second it was OT – my “worst” subject. We have been testing and so far have found out that I have some right side inattention  with some potential visual field loss (yet to be determined). I am highly distractable and have cruddy audio attention but the upside is my visual attention is decent! I like pictures!

Third was Speech – Yup that stutter that I picked up in the summer is here to stay.  Damn pressure on the brain – just hit the part.  I must say it definately comes out when stressed or anxious. We will also be working on organizing thoughts to tell a coherant story when talking.

The doctors are trying to get my meds right – zombie to keyed up does make a body tired.  The plan is if I work hard I will see results upwards to two years.  I will be having a neuropsychological testing done on Monday and from there they will be able to know more specific things.

I am listening to all this and the muscles on my face start to shake and then my hold body shakes. What the hell is going on, I got so stressed. Man my body reacts completely differently now and I have no control of how to stop the shaking. I even shed a few tears. I was releived when it was over so I could process all that information while I walked around before physio.

So it is what it is – Yes I have a brain injury and it is more than what I originally thought (denial or front lobe damage who knows).  I am officially accepting that I am “One of those People”!  No worries though, the upside is that instead of having a mid-life crisis that many people go through at 40; I get to say good bye to the old me and embrace the new me and get to re-invent myself. I am looking forward to figuring out what those adventures are going to be.

Although I miss Chris and the boys quite a lot, I am feeling at home on the unit and know that I am getting the best care here.  Now that I know a baseline, I can work super hard to fill in all the gaps and use the therapies to help get me there. The good thing is, is that the stubborn red headed still exists and I will not give up.

 


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Unhinged

I began a little blue pill a little three weeks ago so I could sleep at night.  I began at 1 pill (10mg) and then went up to 2 pills (20mg).  Within the first six days I had some crazy thoughts and weird thoughts.  I had not been depressed up to this point so I just thought it was probably a side effect.  I also know that I began to feel unmotivated and zombie like – just numb. Well then last week I had the emotional roller coaster. The medication was working that I was not waking up for long periods; only up for fleeting moments and the  headaches still happened, but man I was becoming unhinged.  I am not ever usually an emotional mess like this.  Of course I am super anxious.  So my medication has shifted to a yellow and white capsule.  We will if see I don’t feel like a tired unomotivated zombie.  Even with a sleeping pill last night I slept from 1030 to 2 then up and it is now almost 7am.  I would rather feel normal and not sleep than sleep and feel like an out of control zombie. Of course I am stressed…I would like to drive again.  Driving would make my life easier and help me determine if I could be an environmental field person.  I am uncertain if I want to teach again.  I know I successfully did the two hour bugs session three grade one classes.  I also know at near the end I was tired!  There is so much I need to learn to be able to teach again.  I know that my job at the college is not there anymore.  I was only part-time and so there is no going back unless there is another opening.  But who knows maybe I can convince them they need a field trip/lab prep tech or something. Yes…I am anxious; money situation of course, my disability EI ends next week.  I hate not being in control of not knowing a final outcome.  I know everyone says it takes time!  I realize that but sometimes hearing that is not enough.

It was a touch and go situation with letting me go home for the weekend.  Geez…I was taking the shuttle.  I had already been at home prior to being in the unit.  So after being told yes, then being told no, then being told yes, then being told no, then finally yes.  I was relieved because money had already been spent on a ticket.

So my homework to myself this weekend is to not be anxious and relax begin to meditate and  to practice walking with my right foot and repeat heal toe heal toe!  I think I will bring my computer down to speech because I can show how much more easily it is for me to get my point across by typing than writing with pencil.  My god.  I was asked a question and had to write down an answer with a pencil.  Super easy right – ummm…my writing looked worst than wyatts and I wrote a sentence about the same grade level.   Crazy.  I am chalking it all up to bad meds and stress!

When I get home Chris is trying to be nice because he says he likes that I am slower now with walking and talking.  Before I would walk and talk to fast.  I really don’t know how I feel about that.  If ya didn’t like me before with all my high energy and go-go-go why did ya stick around.  Were you waiting for the slow mode to kick in.  Thanks for the compliment – I think?!

Guess who I got the best welcome home reception from – yup you guessed it Echo, the dog!  Ahhh the boys missed me maybe a little.  But I know them, they will glom onto daddy because daddy does all the fun stuff.  I finally did get hug and cuddle from Wy.  D had a meltdown and was sent to his room.  After he came out he fell asleep on my lap.  So it took a bit but mommyy was missed after all.  Today will be a fun day.  We are taking the bus to Ruckers, a very noisy and crazy lights place with video games for a birthday party.  Yay!  I will be bringing ear plugs and sun glasses (if needed) and I really don’t give a shit what people think!

 


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Giving Thanks

I know that I am a little late on doing a thankful post for Thanksgiving, but I belive in being grateful everyday rather than just once a year.  My son brought home a great picture of a turkey with words that his is grateful for.  He wrote down all the important stuff that his is thankful for such as health, family, our world, Medicine Hat, and chicken.

It has been almost two weeks since my dad left.  I am extremely grateful for him spending four weeks in Medicine Hat.  He totally disrupted his normal routine; missed his oldest grandson’s first touchdown and football games to come help us out.  My dad was indispensible by doing quick grocery shops, getting the boys to school and being my chauffeur by driving us every where, as well as keeping the boys occupied.

The most important thing that I am grateful for is the special bond that W & D have with their Papa.  The boys really only get to see their Nana and Papa two/three times a year so having four weeks of one on one time has created a lifetime of special memories for the boys. My dad spent countless hours playing, drawing, building Lego and just out with W & D.  My dad hardly took any time for himself to go for his daily walks or nap.  Instead he powered on even though he was tired and not used to the endless energy my two boys have.

There is no amount of money that I could ever pay for what the boys experienced.  They were so upset that Papa had to leave, but on the other hand the other two grandkids were so happy to see Papa again after a month of missing him too.

The first week after my dad was gone was like a roller coaster.  I was getting things done with my handy dandy lists, but then I would be do too much the one day and completely down for the count the next day.

This week has been better, as I am trying to limit the number of things of per day and remember to rest.  I am working on making a loose daily schedule to create a routine. I have done some research on brain injury and what I can do to be proactive to help my brain heal quicker.  Some things I read I understand, others’ I don’t understand.  I have great days and other days I complete forget.  We had two homestay student students over for dinner and I completely blanked two days later saying we did nothing that night – completely forgot.  I have been playing a Nintendo DS game brain academy before surgery and now I see an improvement.

Today I had my six week post operative follow up appointment at the Hydrocephalus Clinic at Foothills Hospital.  It was great to be so close to the only Hydrocephalus clinic in Canada.  Great to hear that they have completed thirty surgeries like mine this year alone in people with the same condition as me.  I am told I will not get my brain memory stuff will not get any worse.  The surgery fixed that.  I am told that my brain will need time to heal – “it is like an old man and doesn’t like change!” So I guess I gotta go with the flow and continue working on getting better.