Howdy Hydrocephalus

Understanding my unique gyroscope


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Creating My Opportunity

I have had my fair share of people questioning me about my ABI. Those people often only see me for a small amount of time. I expend a great deal of energy to act normal. Okay I know that I am not abnormal, but it takes a large amount of effort to have a conversation with people who I really don’t know especially if Chris is not there to let me know that the person does not want to talk anymore. I have come a long way but the cue reading and may not always be there. Some days I just do not have the energy, patience or gumption to even socialize. I often hole myself up at home and socialize online. 

My fingers type way faster than my trying figure out what I want to say outloud. I have spend the last three months coming up with a great business idea that I feel deep down will work awesome for me. I have applied and been accepted into an Entrepreneurial program for disabled people. I am just waiting to see when I start. I have started putting things on the computer, making my website to the point to where I will need help to finish…long way to go yet; and I have used Airtable to make an amazing spreadsheet to help with Market Analysis. I have the brains…okay I am slower at processing, have attention issues and my science side has been disrupted. This does not affect my overall intelligence. In fact, it has really increased my creative side even more than what it was before all this began. 

Lately I have had some brain function increase (okay I forget what I was going to write, but I was so amazed that some science stuff spewed from my mouth effortlessly like it was locked away and a key was finally found). But then as I improve in some areas, others started to crap out again. My short term memory has been giving me more grief. But oh well…with an ABI you body and brain may function awesome for part of the day and then crap out for the rest. It is that ebb and flow of life long recovery the frustrates others around me. I have to laugh at their frustration because they are only annoyed by little things like stuff I have forgotten. I have to live with it all for my entire life. Do you know how hard it is to maintain that smile, be positive and carry on. To take the continual words of “you must of misunderstood” (often that is the case but not always. Maybe You misunderstood me and I actually know what I am talking about) Or that you can not be productive or worthy…that you are a leach or one of those people wasting our taxpayers money. Or that people only see you for the disability and not see your talents.

I openly speak out about my disability now. I advocate for awareness and inclusion. I write about my struggles so that others who read can gain understanding or support that they are also not alone in this. 

Okay I finally remembered about one part I wanted to share…I recently watched the movie Wreck it Ralph with the kids. I wanted to watch it for two reasons. First, I like animations movies and second it has a great analogy of a brain injury.  The locked secret files (where the evil king hid the games memories that he was not really the leader) in the computer game brain are a great visual of how a brain can be after an ABI or TBI. Where information that has been stored in your brain is all of sudden locked away because the neurotransmitters have lost their connection. This connection may re-wire itself with no help; it may re-wire with lots and lots of rehabilitation or it may never re-wire. It means you may have to re-learn the information again or that you just say screw it I will find a new way to do/think/act…it is apart of the new me and you own it. 

Then the Boys and I watched Finding Dory…okay I only saw about half of it but it was the first time I had seen it. Another great ABI, TBI type of movie. I totally understand and love my boys even more because when the first time the boys saw the movie they kept calling me “Dory” in their little boy loving ways. They are perceptive and accurate and just call it like they see it. They saw me pre-surgery, post surgery in neuro ICU…at home struggling until I could get into in patient Unit 58. They saw all the other residents in Unit 58 in all shapes and capacities. They saw me when I couldn’t drive; when I could drive only to the school and back to now where I can drive to Coleman or Calgary. Next will be my trip with them to Vancouver, BC. It may take me three or so days to get there but we will!

So instead of trying to fit in….I am going to stand out. I am making my own legacy. I am going to make my family proud. I am going to make this business work for me and not just work for a business. This business is not just about money. It is about giving back and to hopefully include people who are often excluded in the workforce. I believe I will be able to help make at least one or two people feel that their lives are meaningful again. Maybe even help more. I am setting my sights high. I am positive that my hard work, persistence and re-learning of who and what I am and what valuable skills that I have to offer over the last five years has cumulated to now where I feel comfortable knowing this is the right move for me. 

I am moving forward with the new me and I really do like her alot.  This is the right time to take the risk, jump in with both feet and just go. I can create a legacy by being stagnant….especially since it is Brain Injury Awareness month and I have been overloaded with the negative news posts and research about how exponential the chances of me acquiring Alzheimer’s are after a severe brain injury. Geeze thanks alot…Hydrocephalus, ABI, Steven Johnson’s Syndrome, Pituitary, Sleep issues, Mental Health issues…hell I am not taking that kick in the pants. I know I have amazing genes on one side of family. I am living as long as my Gran Gran.  So I hope that you can discover and create your own legacy. 


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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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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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Building Yourself Up

Okay I admittedly ran myself down and it has taken awhile to be at 50% function. The erratic spring weather changes, Chinook winds and lack of sleep have not helped in speeding up my recovery. On Easter weekend a blister formed on the inside of my mouth behind my top six teeth. I really didn’t think much about it as my flares for SJS (stevens-Johnson syndrome) had eased and my hair had even started to stop falling out.

PassTheRibbonTwo weeks ago, a Facebook friend, SJS survivor, and SJS advocate, Julie McCawley developed a very bad flare. I think that Julie’s mom started Stevens Johnson Syndrome Foundation in 1996. In 1994 at ten months of age, Julie McCawley was diagnosed with SJS and has been fighting this battle ever since. I looked at images of her flare and felt her pain. Her flares are much more drastic than mine. But she is a strong woman that inspires many people who are also facing SJS.

Two days ago, my lips felt like they were burning and peeling even though I was putting on lip balm and drinking lots of water. Yesterday, my hair started to fall out again and sensitive skin behind my neck. Later that day I find a couple little round blisters. They are small with red and purple in the middle and my sensitive skin is itchy. Great time for the Benadryl. I guess with being run down, my immune system took a hit and I am lucky to have a little flare.

I guess I could have predicted it coming. I was feeling run down, fatigued, headachey and in a bit of pain. When I feel like that I don’t necessarily take my vitamins, eat right or feel like taking care of my self. I know that is when you should be taking care of yourself the most, but I don’t always have the energy to when I feel like crap.

So my goal this week is to build myself up – start taking my vitamins, rest lots, exercise a bit, eat healthy. I will try to take it once step at a time. Hopefully I will be back up and running shortly. I have lots to do! When you are feeling down or out of sorts, what do you do to build yourself up? Any suggestions will be helpful. Maybe I am missing something in my diet. I know that exercise for me is a bone of contention. I want to do some but then end up toasted. I definitely need help there as I am becoming a chunky monkey like my dog. I am becoming limited on wardrobe choices.


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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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Almighty sleeping pill power

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Since I have been taking a sleeping pill lately – I now not the healthiest thing in the world, but ya gotta do what ya gotta do until I improve my sleep cycle routine etc… I have been surfing on my Ipad (with tinted glasses on to avoild the blue screen of sleep death) and finding all sorts of articles. I usually find them the next morning and think what the heck was I searching for. But this article 7 tricks to improve your memory was a great re-read. I can not remember anything that I do in those moments from taking meds to being knocked out.

When I grabbed the Ipad moments ago to surf the internet, I found out that last night I was looking at articles for memory, different alternatiive health methods, art journalling, brainline.org was open with four different articles. I then looked at what apps I had open and I started doing luminosity and I guess i didn’t finish. YP shopwise (didn’t even know I had that app or what that app is) and Facebook (no one look at what I posted in case it was baaaad). I found my ipad on the side of the bed this morning and have no idea if it just slid off the bed or i placed it there thinking I had put it on the bedside bookshelf.

So I take this pill under my tongue and think that it really doesn’t work but it fact it does and maybe a little too well. This tiny little pill packs an immense type of power. I am still using my essential oils at night. But I need this crutch for a bit. I don’t have time right not to allow myself to go through an insomnia cycle naturally.

Our last Brain injury support group was about sleep, nutrition and wellness. It is so true to that things come into your life at the right time. It was good to re-learn and listen to everything. I just wish i had some answers to why my brain does not like sleep when it really badly needs it. It seems that my brain wants to have one of those lingering hanger on unhealthy relationships with insomnia.

My SJS flare is a bad one (my hair is falling out in handfuls) and I can’t afford to let me immune system get weaker. We are packing to move and Christmas is around the corner. So I will allow myself some slack and give my brain some much need recovery time and rest


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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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