Howdy Hydrocephalus

Understanding my unique gyroscope


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March is Brain Injury Awareness in The United States

It has been a very active Brain Injury Awareness month. I have read so many wonderful tweets from fellow survivors and bloggers. I was even asked by Lyrysa Smith about Hydrocephalus. She is a journalist, book author and caregiver to her sister’s ABI after carbon monoxide poisoning.  She read my blog and then messaged me some questions. What an amazing person.

It is always meet such positive advocates. People with TBI and ABI need positive advocates. We also need to have more up to date resources in smaller centres.

I hate how I have to explain what my condition is, what an ETV is and now have to explain that my hydrocephalus gets worse when something is affecting my body to ER doctors. I will voice stronger rather than be put off like I am over reacting. I have a reason to be concerned. When my Hydrocephalus symptoms increase…head pain, pressure, more right side fire ants/tingling; I begin to walk funny again. My right side grasping and coordination start to fail…I can accidentally drop or throw items in my right hand. I also have a hard time understanding people especially when on the phone. My cognitive gets worse too. My short term memory is really bad normally and it takes and extreme amount of effort and time to move items from short term to working memory to long term memory even gets worse. My perception begins to change and the world can begin to get all swirly again and off balance again. 

These symptoms are the only symptoms I have to go on if there is issues with my Hydrocephalus. I do not know when I go into the ER if my ETV hole is partially plugged and flow is disrupted or anything other. I am told to go the the ER by all my Doctors in Calgary when I experience these symptoms. But When go to the ER here in Medicine Hat. I am shoved off into the cubicle B of less serious cold, flu & malingerer section and made to wait. (I don’t mind waiting as I know people come in with serious conditions but my can go sideways quickly and being blown off all the time is not cool). By the way the same one where I sat with Stephens Johnson’s Syndrome all blistered, bloodied mouth and peeling skin) as triage didn’t think I was serious when in fact I was being poisoned by my Meds and burning from the inside out. (PPL make mistakes and that nurse made a huge one. I still have rash and skin issues to date). 

I dislike that when you have a life-long condition and that you are made to feel you are wasting the medical system, hospital system, tax payers money when I go into the ER. No my condition never gave me a huge fever and my blood pressure would always read 120/80 (which is high for me but they always ignore that with a polite tight lipped sneer of someone who fully believes they are more qualified to know my body better than me) even before my brain surgery and definitely not after. Only once was my blood pressure at 170 or higher and they stick couldn’t figure out what was going on…infection…partial blockage. No on really knows…most likely me panicking because I couldn’t stand. 

 It is not like I go in on a whim. By the time I voice my conditions to my hubby I have thought long and hard if they are serious, is it just me over reacting etc….By the time I mention to my hubby, he will usually say it is better to waste your time in the ER and find out rather than sit and wait and maybe have things get worse quickly. He always asks if we should drive to Calgary and get the on-call neurologist. I always say no, that it is too much of a drive.  I dislike that knowledge level is not that good here. I dislike that I am going to explain more and more at the hospital. And then for them to say…it is not the hydrocephalus…it is my sinuses, anxiety, in my head, i am faking. Why put me on the defensive. Do you realize how much that hurts to me mentally especially when I am so much in pain and on the last rungs of hope. But when in fact they symptoms are my Hydrocephalus increasing because my body is fighting something. My neurosurgeon explained that Hydrocephalus symptoms will increase when there is something going on in my body. That my hydrocephalus baseline should return once what ever is going wrong in my body has been addressed.

So far I am three months of feeling off and I am not any better. The regular doctor gave me nose spray, I am taking allergy pills and I am now debating to go back to my Dr. Office and be a stronger advocate. The last time, the Dr. I saw thought I was a little aggressive. Hell yes! I am sick of not being heard. Sick of no solutions. Sick that they experts keep pawning me off saying not me…and saying I need to see someone else but no indication that a referral has been made. I am sick of the same cycle of treatment I had before my surgery five years ago. It is like they want you to fall through the cracks.

Why don’t  the Doctors and nurses just say…well your hydrocephalus symptoms are worse and that is an indicator that something is wrong in your body. Let’s figure it out so you can feel better. But no none of that. Oh hell no…no patient care…more like lets see if we can get her to go away. Truly our system is broken when you have to be a broken wheel, act like you are in severe traumatic pain (I don’t I get quieter and quieter as I focus on mindful meditative breathing and imagery) to be seen quicker and to be taken more seriously.

Thank goodness I have an appointment with the brain injury clinic in Calgary in April.  I know my Doctor there will listen to me. I am counting the days to actually be heard. Why is it that the brain injury clinic, endocrinology clinics and neurology clinics in Calgary take the time to really listen and find solutions. Why is there no out of the box thinking here in Med Hat? suggestions…the “let’s try this” type of approach. I mean really it does not take that much time to sit down and brain storm ideas. To verbally communicate, visually communicate with pictures from the computer. To take a risk and try something new.  


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Acceptance

There is a large tribe if TBI/ABI/PCS (Tramautic/Aquired brain injury, post concussion syndrom) on Twitter. We tend to like online social connecting sites becuase when we are feeling like shit, stuck in bed in a dark room these sites may be our only source of connection to the outside world. I remember, I had relied on social site for four months once. I could barely get out of bed without feeling like I would pass out.

6181aee523d4e4937731bfac6e6b48bcThere was this post “How do you cope with TBI/PCS symptoms?” yesterday. Now this may seem to an easy answer for those that are clinical…look it up on the Net and list off…rest, eat healthy, follow your medicine, blah…blah…blah. However “How do you cope with TBI/PCS symptoms” answer is not so simple. It is really a big whoop ass can of worms.

First off people who are “normal” will just say here is a list just follow it and you will get better. These are innocent, well-meaning people who really have not walked this journey before but instead are taught what to say and do.

f118d7a457ea10f91cc29d9648c1df35When you are knee deep on this new life adventure (so much nicer to write than sucky life-long condition) is to grieve. I mean grieve the loss of who you once wore. Believe me this is not easy at all. I am over three years in and I still grieve.  I still get mad and frustrated at where I am that it often clouds how far I have come.

I mean who wouldn’t want their old life back where everything was easy peasy; thoughts swift & quick; anyltical skills and crital thinking intact; planning & organizing there; coordination; strength; energy to work, look after family, have hobbies & social life at a moments notice and above all live pain free…But I am not that person anymore and I accept that I am not that person most of the time.

cf07f453bef187cb4c57a7e706c33b45So we have our pity party for a bit then I mentally kick myself in the ass & my drill sergeant tencacity kicks in. I mentally say suck it up sunshine; usually something about not quitting and other motivational stuff to get me out of a funk. I take responsibility for getting myself out as no one else can except me.

  1. I read motivational pictures & quotes images
  2. I watch motivational videos. Unbroken or Why do We fall
  3. I read Motivation Facebook Group Bright Side or website Elephant Journal
  4. I focus on anxiety reducing activities such as breathing. (I do alot of this)
  5. I remember I how I have come. The challenges that I have overcome.
  6. I focus on the positive. It really becomes easy after a while. For example, the biggest positive is that I get to become a new me. I am learning what I like and don’t like. I get to experience things for the first time that were old hat for me. Trying foods to see if I like or dislike etc….
  7. I move forward.
  8. But above all I am grateful. I am grateful to re-write my life. I am grateful that I have learned alot about myself with the journey. I am grateful that I am here living. I am grateful that I have found who my true supports are. I am grateful for a new approach to living. I am grateful to explore each day with new perspective (literally & figuratively). I am grateful that my kids are hopefully learning about compassion and empathy (no zombie comments lately – LOL) I am greateful allowing myself to fall & get back up again. I am grateful that I am able to express myself via writing and art (verbally and body language not so much). I am grateful for the opportunity to start fresh each day.

So really to “cope” is not simple there are many emotional and mental steps. There is a lot of time needed. And I didn’t even include all the physical, organization, planning steps that you learn via OT (occupational therapy) that help you function. This is a vast black hole of a subject that just can’t be thrown around in a black & white fashion. It is more of a comfortable grey blanket.

 


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Fatigue

IMG_0871.JPGI have been dragging my butt since the last time I wrote. I am taking a sleeping pill at night and then still having a three to four hour nap in the day time.
There are many reasons because I feel like crude. A few are:
1) I am still recovering from Stephen Johnsons Syndrome (SJS). I am still flaring which is not fun at all. My neck and mouth still swell and get painful along with other parts of my body. I have read that the flares can take a long time to go away.
2) My pain is still not managed all the way. I have been using essential oils to help with most the pain. However, it is no match for when the pain reaches really high levels.
3) My headaches have been back, especially with the weather changes. I haven’t been experiencing as much pain (except for a few days) but I have been getting all the other symptoms. These symptoms include vision, eye watering, sickening massive pressure from the inside out, confusion and feeling tired.
4) Stress has also been a factor since we decided to buy a new home. We have seen lots of houses (too many at once overwhelm me). We went through financing to see if we can buy and then keep our current home to rent out. All is good with that now. Glad we can keep the house to move slowly!
5) Christmas time — well all but one gift has been bought. I love online shopping. Just the wrapping, cards etc…need to get done. Christmas dinner will be a potluck again this year with at least one other family.

Fatigue for me is very mentally and physically painful. My mind and body want to rest but when I lie down, I am uncomfortable and in a lot of pain so I can not rest. It will take me a long time to breath through, relax to sleep. I hate being fatigued. I hate feeling like I am in a thick syrup with a bungee cord pulling me the other way. I hate how my head feels like it on a toothpick and ready to fall off. Fatigue is not a party. It is not just “hey I get to rest because I am overtired” feeling. I hate being snappy and irritable. I hate that I don’t want to socialize or go out. I hate that no matter what I do I am utterly exhausted and do not have the energy to do anything – it is a big deal to load the damn dishwasher or make dinner. It is beyond exhausting and I have no polite term for fatigue other than I loathe it (ha ha didn’t use hate).

I have been getting so cold lately that it takes me forever to warm up. I have to crawl into bed and wrap in blankets to try to stop shivering. Especially after I drop the kids off at school. My fingers have even started to go blue. Chris didn’t believe how cold I was until I lifted up his shirt and put my hands on him. He told me that my hands shouldn’t be that cold after being inside for so long. So I made an appointment to have a phone consult with my Physiatrist. She is back from maternity leave so we will have lots to catch up on. I am wondering if my new med is making the blood pressure low again and my circulation bad. Who knows. We will find out what the underlying thing for my fatigue and cold feeling is…I need to feel better. The holidays are coming and then we are moving. I am excited and i want to show it!

I know that I am not alone. I am so grateful for Twitter and the virtual brain injured community I have found. The online community is not a bitchfest or complainers commune, but instead a safe place empathize with others, offer support and solutions. There are so many people with brain injuries that do not have any local support groups. The one ran locally where I live is more like school rather than a relaxed support group. The facilitators talk & talk & talk to us. There is very little sharing.

Brainline has a great articleFatigue article on fatigue

A fatigue poster from Brain Injury society in New Zealand.<

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Bi-confidence

I am at home with my youngest who has a spreading rash on neck and face so I can not go to todays BIRS meeting. I was looking forward to it. Last weeks meeting was good. Apparently i have great self-confidence and self-worth in my personal life but when it comes to my art (not including photography) and trying to figure out a new professional side, I am lacking self-confidence.

But who wouldn’t lack self-confidence when bascially all the you knew kinda went swiss cheesy and into the depths of the deep dark brain. Did you know that most people see their career persona as their number one person…or should i say those type A people – like the old me see themselves or self-worth via professional side only.

So what is my self-worth and being:
a good parent
partner
friend
happy
pet owner
artist
driver
cook
swimmer/water exerciser
writer
volunteer
advocate
and many more that I can’t currently think of.

I am working three times a week at the Brain Injury Releaning Services to get my brain back a bit more so I can either go back to work or go and successfully do my Masters. I accept that I am not ready at the moment. So letting go of a timeline for completion and being “back” into what some say “productive” place in society is okay. I just can’t stand the stigma of where I am at. “Society leech” “tax payers drain” but it is what it is. So really I do not need a professional side of self-worth. I should just throw that out the window and say screw it. Why do I need two or more self-worth pigeon holes. Maybe I will just have one. If people can’t accept the one, they they should filter out of my life.

By allowing myself to do less, expect less and just be, I am having more energy. Less stress = healthier me.

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New Me…old me…who – TBI & the great identity crisis.

I am fortunate to be a part of a group brain injury wellness program. I am glad there is finally one in the community but I am a little saddened that it is only seven weeks long. It is weird that there is such a short time limit on it when brain injury recovery is such a turtle of a beast and recovery moves slowly.

There was a lecture on personality changes after brain injury. I think my overall personality is much the same, but there are some noticeable things that did change. I do still reflect, but no longer focus on who the old me is. I am still however trying to get used to the new me. The upside is that I get to start over and really I am only three years into the new me so it really hasn’t been to long for me to adapt. However, it is all not rainbows and happy parties, nor is it a pity party either. It is just plain weird and that’s it. It is uncharted territory as I don’t know if this is how I will be forever, or will neuroplasitiy take over and re-route neural activity over time.

Somethings that I miss about the old me are:
The energy I had,
always on the go & doing something,
going out and enjoying it,
my quick wit and sense of humour,
enjoying people,
being easy going,
love to have fun,
and playing with my kids.

The new me tends to:
Get frustrated easy,
embarassed and humiliated (less now, but I did forget how to tie my shoes, now more so if I fall),
go from patient to snapping if done too much and are overwhelmed,
stares off when can’t keep up with conversation or distracted,
don’t show much enthusiasm,
will not think things through & impulse control,
lack a sense of humour – don’t get jokes or sarcasm,
slower uptake on significance of conversation,
awareness of limitations,
seem serious because I am concentrating so hard,
feel that everything I do is for rehab purposes and forget what fun is,
and have a hard time playing with my kids.

Today, I watched the Lego Movie for what seemed like the first time. Although I know that the kids have seen it so many times that I have lost count. I don’t know if I zoned, missed legitimately, or slept through all the other times, but this time I thought the movie was funny. After the boys wanted to play Lego. I didn’t really want to but did. We build a couple things and then the boys got involved in another movie.

I continue to try to re-learn coping skills, acceptance and re-adjustment. I only hope that we as a family is muddling our way through it in a decent way.

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After Brain Injury: The Dark side of personality change part one

After Brain injury: The dark side of personality change part 2

Helping Children Cope with a brain injured family member


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Getting Kids Outta the House

Found unpublished from around October 2012

I received a comment on facebook from a dear friend where she wrote

We take a lot for granted. I recall when we were told to write instructions for a “simple task” and realized there were so many things going on….

It is true.  Here is my list