Howdy Hydrocephalus

Understanding my unique gyroscope


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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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I’m Back

Wow this summer has been one wild ride. My pain levels have been managed with my new med mix. This left me with having energy but with a brain with racing thoughts, low attention and a go-go-go never stop type until you drop type of mentality.

So I just let everything go and enjoyed just being able to actually be a apart of life a lot more. I had a fun summer with the boys. We had no routine, schedule or things planned other than our trip to Vancouver Island.

The boys ran crazy; they were a part of their own wild thing type of clan. I have no idea how much they showered (if any); when or what they ate (probably mostly junk food); how many hours of video gaming (The gaming machine did not overheat); how many hours of hockey, football, basketball, swimming or lacrosse (garage door & car dents accounted for). It is all a blur of running boys, inside outside upside down with a trail dirty cups, spilled popcorn, granola bar wrappers, shoes, wet swim suits and piles of dirty laundry and hidden smelly socks in various furniture.

I was unable to sit down and write. I physically could not site still to read, draw, let alone write. I really wanted to share this summer. There were so many obstacles that I have finally overcome. But my TBI brain wouldn’t allow me to focus on intelligent conversation, sustained attention and unjumbled thoughts. I am glad that I let my body adjust to the meds and let things come back to even keel as now it is mid October and I am able to sit still long enough and write. I actually did begin October 2, but I have no idea where my draft went…somewhere floating in some random person’s email probably.

Then my son broke his leg October 3 and we have been adjusting to that. Talk about mess up my morning routine (LOL) I do my best and some days we are on time for school and others we are not. At least I haven’t forgotten a kid yet.

I passed my 3rd year brain surgery September 4 and my first year Steven-Johnson’s Syndrome (SJS) recovery September 5 with some major recovery milestones. Pain mostly controlled. I still feel tingling and fire ants on my right side. My right side aches when I do too much. I can live with that! But I am doing oh so much more. I still require my naps to be functional, but they are not all day naps unless I go hard core non-stop for a bit. I can live with that! I still get headaches and migraines but they have an beginning and a end rather than a continuous pain that doesn’t end. I can live with that!

I still have sensitive skin, itchy skin and rashes still. I am hoping we can get a handle on this as I hate having lots of cuts and scabs on my arms, legs and back. I am looking like a drug addict. The intense itching really bugs me. I am glad that my mouth only gets irritated once or twice month. I can even floss my teeth now. It takes a lot of energy not focus on the itching. At night it is really bad.

Believe me I am ecstatic about all the positive milestones in my recovery and I don’t focus on my annoyances of this recovery, but i still one not to settle. I am beginning to focus on my next milestones. Sustained energy and steady cognitive improvement. I can see work in the future. I have no clue what type of work, but it does seem more obtainable now!

So I am back not only from my break from writing but I AM BACK to land of living instead of sitting on the sidelines. It just makes it easier to live a meaninful life when not in as much pain.


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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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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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To Dream a little dream

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For the first time in a month I had energy yesterday. For the first time since before Christmas I left the house. I left the house for 1 hour on December 24 to delivery some small surprises to a couple of friends. Other than that I had been in the home since December 20th and hadn’t left. I was tired, sore and had to keep my energy saved to make it through Christmas. Not only did I survive Christmas, I actually enjoyed it. I actually sort of paced myself. I did a lot of sleep and vegging after. I have not watch so much TV as I did the three days after Christmas as I have in years.

I survived the last really bad flare from SJS. It affected my body with hives, mouth & lip peeling and blisters on my face. I also had swelling in my face and my eye was in pain and very dry. But the worst was that I experienced internal bleeding that had me very concerned. I went to emerg and they couldn’t do anything but told me to make an appt. with my GP. Well I would have had to wait for a couple weeks. I am glad my body finally settled down and decided to cooperate and heal. My hair is still falling out in droves so I cut it short as I kept clogging the drains. The hair could be falling out for a number of reasons but most likely due to SJS flare and the stress on the body for having to deal with SJS. I participated in the Educate before you medicate SJS holiday campaign and you can see the video here:


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I am really grateful for the strong SJS community on Facebook. However, everytime I read about a child that goes through this or see pictures of them with third degree like burns over large portion of body I cringe because of the pain they are going through. I feel the fear that the parents are feeling because they do not know if their child will recover. I hope more people can learn about this crazy scary reaction. I wouldn’t wish it on my worst enemy – that is if I had a worst enemy.

So 2014 is almost over and it has been overall a very successful year for me. My headaches are becoming more controlled. My speech has rocked! I think that is because my brain is thinking faster and I am uptaking information and processing information faster so my stutter doesn’t show itself unless I am getting overwhelmed with too much stimulation. I am able to read and say larger words like my medicine and scientific names or larger vocabulary words now. I am also knowing the meanings for some of these words too. I used to be able to do the Reader Digest vocabulary quizzes easily. Not so much now, but better than before.I still get easily tired but I am slowly building myself up. I am trying not to do too much. I have really limited activities in my life. I need to make sure my gas tank doesn’t go empty or else I will go backwards. I have been doing the brain injury re-learning thing three times a week. It is only an hour each time. Well recently I have actually been attending sessions for an hour. I was maxing out at 45 minutes for most the time. I also aim for three times a week, but mostly attend two times a week. The body doesn’t always want to do what the mind wants to do. I have been using the swim spa regularily and it has helped make me stronger. I feel good finally being able to exercise. I like that is is in the backyard because public places are too loud, too crowded that I can not function for long. I have been doing mindful breathing and meditative time. It has really worked.

My biggest accomplishment this year has been that my brain has re-wired my ability to dream again. I don’t mean hopes and dreams type of planning but actually dream when you sleep. This started about two weeks ago and I am loving it. I don’t want to get up if I am having a great dream. After my surgery, my dream world was pitch black. I then progressed to just noise and then flashes of lights and then partial pictures and the whole pictures and stayed that way for a really long time. My dreams are really messed up. Let’s not get Freudian or anything but I find them weird that I dream about my old job in Manning, Alberta but people from my job in Fort Nelson are in it. I think my brain is trying to compartmentalize. It is finally re-wiring and healing. The info is in there but it all mixed up. My brain has distinguished that they were both forestry jobs but can’t yet tell timeframes. Or something like that – I am not the neuroscientist or neuropsychologist. These dreams are action dreams like movies, with motions (not necessarily sound), somewhat of a story line or plot and I am just so excited that dreams are not a part of my life again. And that I actually remember some of them. My first dream that I had was that we were living in a warm tropical place with an awesome beach. It wasn’t very long but had action of the four of us walking and playing on the beach and then buy fruit from a vendor.

After Christmas, I stopped taking my sleeping pill. I have been using essential oils and breathing to help me go to sleep. I have been trying to get a healthy sleeping routine – well I am trying to at least. I am not sleeping as long, but I am sleeping more than without use of the oils and breathing. What gets me is the burning/ants crawling feeling is downright annoying at night as it is more pronounced.

I can’t have everything all at once and need something to work on in 2015. I can not wait for the new year. I have a feeling that is going to be an amazing year. That there will be many great things coming my way! Here’s wishing you all the same for 2015 too!


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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