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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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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Stevens-Johnson Syndrome

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Stevens-Johnson Syndrome or SJS for short is a rare skin condition that affects the skin. It causes skin to turn red or purple and peel away from the body. It also affects the mucus membraines or moist skin in mouth, nose, eyes includiing other body parts. SJS can be caused by viral infections, some cancers, geneitics and between 100-200 different types of medicine. Wikipedia indicates that there are anywhere between “2.6 to 6.1 cases per million people per year. In United States there are about 300new diagnoses per year”.

SJS can quickly become worse and become toxic epidermal necrolysis or TEN. The amount of body surface and severity is a way to classify between the two disorders. Where 3-10% of coverge of blisters of lesions on body is classified as SJS. 11-30% is considered SJS/TENS overlap and more than 10% is considered TENS. The mortality rate goes up exponentially too with more body covereage.

This is my story with SJS.
August 5, 2014. Go to family physician & begin to tirate up on lamotragine. keep lyrica the same

August 22 energy improved. clear headed. camping – feel weak. have drenching night sweats. shake it off as withdrawal from dosing down all the way off lyrica

august 26 up to maintenance dose of lamotratine. still have sweats

august 29-31 feel like have stomach flu. can’t eat. feel sick to stomach. face breaks out in rash.

sept 2 blisters on left hand and ring finger. rash has gotten worse, face, neck upper back. can’t wear wedding ring. left lymph node in neck bulging and very sore.

sept 4th go to walk in rash on arms & legs & stomach. get urine and blood tests. doc says most likely mono but extreme they may need to do biopsy on lymph node no energy. My right side started sagging more and drool would just come down my face.

sept 5th. never had cold sore and only small canker sores. mouth big blisters inside. lips and neck and face begin to swell. barely can walk. skin turned red. Even softest cloth are burning painful. No tags, light weight cotton tank top (no bra) & yoga shorts.

sept 6th morning bottom and upper lips fused together and completely bloody & raw. diffuse with warm water. mouth is covered in white stuff (later dead skin). barely can open mouth. face and neck ballooned. Rub my arms and legs and my skin would peel off like a sun burn. Hot burning pain. Itchy. Eyes starting to get red & gloopy. Hair is falling out on my head. I can barely keep awake. chris comes home late from work & tells me to go to ER because it looks like I have been in a car accident. I have seen myself all day and am in denial. I phone health link they tell me to go to ER within 4 hours. I have trouble swallowing.

I go to Emerg around 8:00pm. Not busy but still 3.5 hours to be seen, two sprains where seen before me. Wait in the non-emergency cubicle and debate whether I need to just go home. I finally see a Doc who asks me questions, takes a look at my meds & then leaves for 5 minutes and comes back to then say he is admitting me for SJS. by 12:30 i have a bed in the ER and I start prednisone & bennadryl. At 3:45am a room opens up and I am taken upstairs.

The next day the doctor who is my on floor physician was the one who saw me at walk in. He asks me tons of questions to what seems like to deny the ER diagnosis because he didn’t catch it. Did I eat anything, wash with anything new. Exposed to stuff. The questions were ridiculous. He asks me if I left a tampon in and if I have toxic shock. i said no. He then goes can you be sure. So all humilty left at the door, we do a vag exam there. No nothing left. I am not feeling confident with this Doc as he left me in extreme pain and it waned even further when Chris talked with him.

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I am so grateful for the ER doc and catching it. He is my hero! He took his time, listened to me, looked at all the visual symptoms and did some quick research. The information that the nurses gave me was really scary and the mortality from SJS goes up quickly. I know that I was a totally anomoly in the ward. So many of the nurses had said that they had never seen a patient with SJS. When I had a big flare up, I was scared they didn’t have a handle on this and I was going to die.

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Stayed in Hospital 6 days. On IV continuously for all but a test 8 hours where I flared up big time so they put me back on IV. I was given IV for fluids & nutrition, Benadryl to help with itching, prednisone to take away swelling and inflammation. I took pain meds & metonia by mouth. It would take me 5 minutes to try to use a straw to suck up 1 tsp of water. My mouth was raw & swollen. I could barely open my mouth & couldn’t stick out my tongue. At night I felt that I was choking on my own blood & didn’t sleep for long periods of time and on an angle. My eyes were itchy & sore and I was given drops so my eyes wouldn’t stick together and I wouldn’t become blind. I was given a grainy steroid cream for my lips that was like sandpaper but in gel format.

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My lips had to have muko gel on them constantly & they would peel off in chunks. I was given an antiseptic mouth rinse & foam tooth brush to basically put myself through pure torture four times a day or searing pain, blood, skin and pus.. Finally I was given another type of mouth rinse that numbs rather than makes you cry.

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I didn’t realize how badly my breathing was obstructed until day 5 when I could actually breath easily. My skin would peel off my forehead. People would look at you with this kind of scared to respond type of look. They were horrified but still couldn’t look away. When I had my brain surgery the kids spent time with me. This time in the hospital there were there only once. You could tell they were scared to look or come sit with me on the bed. I could barely talk. I would drool out my right side.

I could not eat, barely drink so I was on 5 days of a liquid only diet. Then a day of soft. I am a week out of hospital and ate pizza tonight.

When the swelling started to subside and pain pills working, I would joke with the nursing staff that now I was not in the hospital but in a very expensive spa on a detox diet, having plenty of rest & daily chemical peels. Nothing but the best for me.

I have been home from hospital a week and I am starting to get energy & eat. I am still having small flares inside & outside mouth and chest. I still get the heebie geebies when I think of everything but a freak thing like this will not get me down.

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