Howdy Hydrocephalus

Understanding my unique gyroscope


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Back on the writing bandwagon!

images-8It has been an really long time since I have written. I have not fallen off the planet, but have been challenging myself even further. Even though I love to write, there are many other things I have been focussing on such as creating art, graphics, starting a small very part time graphic design and creative life coaching business. I am unable to fit them all into my life at the moment. One day soon I will be able too! It is a goal I am working on.

My life has been changed since September to end of December. I had amazing energy, concentration and steps to move forward. I was able to attend  two craft shows and make for me a lot of goods. Christmas and the New Year were a success. I got everything done for the family, rested & played too! But then January 1st, I woke up with the worst cold ever. From January to now has been an interesting month. I have learned some takeaways about Hydrocephalus that I did not know before. Because of my new knowledge, I have finally decided to work with the Hydro instead of fight it in this case. Fighting it will only make it worse.

So What did I learn? I learned that if there is a stressor on my body like a cold or a completely blocked sinus (with a mass that potentially they think means trip to Foothills again soon) can affect the baseline of your hydrocephalus. So what does this mean.

fb_img_1443293628775My MRI showed that I had amazing flow. I love that my Dr. Sits me down and we look at the images. I love that he explains what I am seeing. He said the grey area where my hole from bottom of 3rd ventricle show cloudy grey. He said that was turbidity. I said “that is to be expected. When flow of fluid has to go from big space down a narrow tube – it speeds up – basic physics…you know my background before all this was science!:”  I almost knocked myself off my chair when this came out of my mouth. I was shocked as shit that my brain just pulled off something that I thought was long gone.  Nope just in hibernation waiting for my neural re-connection.

Distracted Side note Inserted here:

The black hole of my brain injury released some new information. Lately I have been experiencing this more and more…snippets of old knowledge and experiences pop into my head.  I wlll write a blog post of what I can compare this to in hopes that it can help fellow TBIers but their experiences into words.

images-5So my new baseline was how awesome I was doing before feeling cruddy in January. This means that until my stressors on my body…the blocked sinus thingy will continue to put negative stress on my hydrocephalus until it gets addressed. So in the mean time I will experience and increase sleepiness, tripping, falling, dropping (or accidentally throwing items), weird walking stance, numbness, tingling, head pressure, pain, and cognitive decline. I have been having a hard time figuring processes, and steps to getting things done again. Decline in remembering what to do with Adobe Illustrator again. I have been saying the wrong words for things more and more. For example for the last month I have kept telling the boys to put their laundry in the dishwasher.  

images-2You know that gets old quickly when you have two parrots who are like okay and start to put their dirty laundry in the dishwasher. My kids are jokers I say…but when I am stressed mentally with the weird symptoms that have popped up in my life, my sense of humour is greatly diminished. Actually irritability, and anger have popped their dragon heads up again so much that the boys have noticed. They joke that driving with mom is like “beepidty boop boop beeep” with the added family finger.

kitty-fingerI have been reassured that symptoms, although scary will go away once the stressor is fixed.

Let’s hope this happens quick before my control and filter completely disappears and I actually tell off a stranger who is pissing me off.

 

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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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Bringing back the Food!

_MG_0069aOkay I survived the elimination food diet. It really wasn’t that bad. There are so many options to eat. You get to re-discover the real tastes of foods again. I also was able to experiment with foods I haven’t eaten in a long time or ever. Although I travelled in the southern United States and I tried grits (didn’t like), fresh beady eyed shrimp (good); I didn’t have the opportunity to try okra. (given that were were on a young person’s budget which meant we lived in tent and cooked our own food).  I finally was able to try okra and I loved it. I just need to learn how to cook it at home. I just hope it is not part of the nightshade family. I experimented with recipies. I made a bean and sweet potato soup, or what the boys call a stew. It was yummy and the boys even liked it (score!) The boys have loved the granola too! So much I am making it from scratch (easy peasy) as soon as I was able to find GF oat as the tiny bags as store are ridiculously priced. I saw a funny video and thought here I am writing about my experiences.  How to become gluten intolerant I know that there are plenty of books on this. I only read one (forget title) based on food intolerances and I never finished it as it ended up being a diet to lose weight book. What a crock. The book sparked my memory of allergy testing eons ago and gave me courage with food recipies (along with Internet) to move forward to see if my tap of a nose, rash, snots & bubbles were caused by food or other external factors. The only way you could lose weight by doing the elimination diet is really like any other diet is to cut calories and starve yourself. There really are endless good food items to indulge in.

I was so excited to bring back the food, I kind of forgot the second part of the elimination diet and went full bore into eating. Never trust a brain injured person (okay just me) to get it right the first time. I ordered a fast food burger and french fries (hey I am human) then ate/devoured it without thinking (can’t remember if I breathed at all during the feast). Of course I still have no idea which items of food were bugging my chest and nose as I ate wheat, dairy, tomato. Oops.. all I know is that my face felt tingly, I got phlegmy and my nose ran. Great.  What was I supposed to do again. Oh yeah…add back one food item every four or five days. Mmmm what to do…carry on like all is normal. and try, try again.

_MG_0060aSo after another food kafuffle or two or four, I have found out that I am able to eat corn, peanuts (not a big fan of peanut butter but fell in love with almond butter in this process), and soy. I will continue being gluten free for a bit. However I miss having a beer (nose runs almost immediately when drink it). I love cheese and have been dreaming about when I could re-introduce cheese. I went out and bought brie and herbed goat cheese to test dairy this week. I am a little dis-heartened as I had a fruit smoothie for dinner at a restaurant as the boys had burgers & ice cream for dinner (a treat from surviving their yearly check up at our family doctor). About 30 minutes after drinking my mango/pineapple smoothie, I was given a treat of some nice belly pains. So instead of calling off all dairy for the evening, I instead bring out my wonderful cheese, rice crackers and a glass of red wine after the  boys go to bed. Mmmmm the brie was soft and rich, while the tangy goat cheese went awesome with the wine. All went down smoothly. I went to bed and woke up coughing from a phlegmy choking feeling. Damn…not the cheese…I love the cheese. So I made a compromise with myself. I will try not to eat cheese daily but will allow myself to indulge once in a while. I do this as I working out food options for when my friend , Manj, the four kids and I take off to a cabin in Cypress Hills for a few days during spring break. Life isn’t black & white so my food choices will not be either. I will just have to live with the consequences.


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The Wandering Nerve

kelly dec 2014 234 I had originally been told that I had neurogenic stuttering due to my brain injury. The stuttering began at the end of June in 2012. I guess the increased pressure from my hydrocephalus had damaged my language centres enough for the stuttering to begin. When I was released from rehab, I began speech therapy at the Medicine Hat Hospital. It was there I worked with some great therapists. We worked on speech techniques, word finding, categorization and a variety of other speech related things to do with muscle control and rhythm. I remember that I learned of one the two damaged cranial nerves that was affecting my speech. The Vagus (wandering nerve or tenth cranial nerve) is important for many functions other than speech such as heart rate, sweating, digestion and blood pressure (mmm so many answers are now coming to light).

A damaged vagus nerve can cause issues with muscle control and swallowing in the mouth and neck. I am no expert at any of this but it was explained to me simply that speech comes from the brain figuring out word to diaphragm with the air flow up, to voice box (larynx) where the vocal cords vibrate. From there the sound then is resonated into nose, mouth area. Speech can be disrupted anywhere along the process. I know that I still have trouble swallowing quickly and sometimes choke on water etc…if I drink or eat to quickly. I have noticed this more since I had SJS as my mouth was so beat up and sensitive with blisters, open wounds. It feels like there is a large marble around my adams apple. I am guessing that I have muscle weakness and lack of control on the right side of my neck and mouth that was similar to every where else on my right side. As part of my therapy I had to work on my breathing, hold my hand up on my neck and face to feel certain muscle movements when I said certain words. I know that my stutter comes out with certain letters or letter groupings. It also can come out when stressed, overwhelmed, sick or if I am stuck with the cognitive process of what I wanted to say. Thus I love social media or online interaction more than in person.

kelly dec 2014 118Along with speech therapy, I also attended an Aphasia group at the mall that was run by the speech therapists at the hospital. This was a very good group because we played games and did activities that not only worked on speaking but on word finding, grouping of words and rhythm of having a conversation again.

I had started out with really one word answers of either “fine” or “good” for my conversation depth and breadth. Then I was able to pre-plan a sentence that I would knew would get a person talking so then I wouldn’t have to talk anymore.  From there the amount of pre-planned sentences went up. I would also have a stash of questions to ask. I knew if I asked questions, I would not have to talk much and lessen the chances of me having to stutter. This went on until about mid-way last year.  I stopped going to speech and began going to the Brain Injury Re-Learning Service (BIRS is a part of REDI enterprises), the big red building with paper planes flying. We began cognitive, memory, visual-spatial, awareness and attention rehabilitation. By the end of last year my speech had improved greatly. My stutter was almost non-existent and the biggest thing that no one probably noticed was that I was having conversations that were less and less planned. I was able to be more spontaneous and talk more freely. I had volunteered with the Kindergarten class to help with reading January 2014. I remember reading the Dr. Seus book “Mr. Brown Can moo, Can you?” So everything was going along just perfectly with no verbal glitches. The kids were repeating all the sounds in the book. I was having a great time until and then I got verbally stuck on a word. Here I was stuttering on a stuck word with 16 kindergartners repeating the sounds as they thought it was a part of the book.  Both the teacher and teaching assistant are cracking up at the back of the room and I am now cracking up laughing with my little parrots doing the  same thing. I had tears running down my face as it was so funny and priceless. I loved those kids, they just went with the flow, like I did!

kelly dec 2014 396I think the reasons for my improvement are re-connection of brain pathways due to neuroplasticity, lots of practicing in front of mirror, breathing exercises, word finding exercises, luminosity, word puzzles, boggle, volunteering, helping my kids read, helping my kids with their homework (last year I found some grade two homework hard), speech therapy, Aphasia group, BIRS, becoming slightly more cognitively aware, not giving up, not being afraid of failure, time (as slow as this process is), getting pissed off, frustrated and not settling for a brain injured status quo. I am have also been helped by the wonderful support that I have found on Twitter. There are so many people that I have connected to. Just supporting one another with ideas, suggestions and strategies has been very meaningful for me. Some days my fellow #TBI #ABI tweeters are the only people outside my family I connect with. I was fortunate to meet up with the founder of #ABIchat. This is an online support group on Twitter that I have participated a couple of times to.  I just need to find out when the chats are again (in the brain and out the brain syndrome). I really think healing and recovery of the brain is being re-defined.  Hearing from other high-functioning brain injured people has given me hope that I will find my niche and happy place being a productive member of society again. It really bothers me of the negative stereotypes and judgements that happen when you are labelled disabled and on disability as a form of income. The flippant comments and the poor treatment is often jaw dropping. I know that I shouldn’t let the comments hurt but they do. And it is often just general comments from people who do not even know that I am on disability. I have kept that mostly to my self and immediate family until today. I have to just shake my head and wonder what education level and knowledge where the people with these comments are coming from. I have to remind myself that it is not me but them that is broken.

 


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3-2-1 Blast Off

IMG_0928-0.JPGOn my quest to find more energy and to nip my fatigue into a more manageable piece of my life. I read numerous articles such as Feed Your Body, Feed Your Brain – Nutrition to speed brain recovery. Then I began to read a book about an elimination diet to help your body heal and reduce internal inflammation. This spurred my brain and I remembered about my allergy testing I had done a long long long time ago.

I was having IBS and allergy issues when I lived in Fort Nelson, BC. The doctor there put in a referral to see an allergist. Chris and I drove the six hours to Grand Prairie, Alberta to have allergy tests done. I really wish I kept the list. I had reacted to a whole bunch of things. I was to avoid, eggs, wheat, potatoes, tomatoes and a bunch of other food I can no longer remember. I had also reacted to dust/dust mites and snow mold. I really wish I could remember more. However, I do remember looking at the list and wondering what the heck I could eat there was so many food items on it. The Doctor didn’t have any help for me on that. So I basically said thanks for the info and continued on eating as I normally had always done.

Skip forward 14 years and the options for food choices for people on an elimination diet are amazing. There are meal ideas, recipies, hints, tips and all sort of wonderful stories on the web.
He won’t Know it is paleo blog
The Urban Poser Blog
Gluten Free Goddess Blog
Purusing these blogs and other websites gave me inspiration and the knowledge to be able to test run a 21-day elimination diet. I put word out to friends and found out that Costco carried a gluten-free pancake & waffle mix, cup for cup gluten-free flour mix, organic palm sugar and gluten-free pasta. I went there and stocked up. I already had coconut oil and olive oil and flax seeds.

I began my peanut-free, dairy-free, soy-free, corn-free, egg-free, gluten-free, refined sugar-free and nightshade veggie-free diet. It really does sound very overwhelming but so far it has been pretty good. I fell for one-day and ate refined sugar so I had to set the clock back and start again for that one food category the next day.

I have successfully made home-made blueberry/raspberry gluten-free muffins sweetened with palm sugar. Palm sugar is a low glycemic sugar.
I then made tortillas. They were not round but free-form. I had a turkey wrap with spinach and strawberries and it was divine! Bread for me – Yay!
I have been drinking smoothies with Greens and hemp fibre, coconut/almond milk and lots of fruit for breakfast, lunch or snacks.
I have been having fun exploring and enjoying making dinners the most. Tonight I made a pesto pasta with sautéed beet greens, beans and a bit of chicken.

I am tasting so many amazing natural flavours. Thank goodness for lots of amazing options that I can experiment with. I hope that I will be able to notice changes by the end of three weeks. Here’s to blasting of with energy and increased attention span.

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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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Snake skin

When you have Stevens-Johnson Syndrome (SJS) your skin gets all irritated, bumps that turn to blisters, then scab and look gross. It also means burning hot skin that peels off like you have a sunburn or are like a snake. I feel like I am snake. my calfs burn and face peels. When I go into the hot tub, the jets affect my skin and it can hurt after a short time.

I have been improving! my mouth just feels like a cheese grater and goes in waves of being sensitive but it is no longer a bloody gross mess. I have a dentist appointment coming up and cringe as to what he is going to say.

my face is still bumpy but not as much. I finished my Benadryl and now down to eight prednisone pills a day. In eight weeks I should be off the pills and my adrenal system working again – fingers crossed!!!!

I have a brain injury appointment again near the end of the month and we are hopefully going to be allowed to do Botox to help with the headaches as the pain has come back. I am 24/7 at a pain level 6 or 7. But what is helping keep at bay is Peppermint and Frankincense oils. I am able to function when I apply every 4 hours. Sounds silly but works for me. My physiatrist (rehabilitation doctor) believes in oils, alternative treatments and vitamins to aid in my recovery. I have begun to take the vitamins prescribed again and feel energy from levels of vitamin D he prescribed.

I am literally shedding my old skin and beginning to thrive and feel comfortable in my new skin. Sometimes it is not too bad being a snake!