You can’t put a price on good, quality, free time

The past few days have been much better. That heat is finally over for a bit, and a cold front came in to cool things off. There were some major storms in our area, which were pretty neat to watch… except for that a day later we heard from the weather station that that same storm created funnel clouds over our city. I’m not surprised, the sky was pretty crazy for a bit. It was raining so hard, that the force of the water from the downspout on our house blew off the drain hose, and my Mom had to go out in the downpour to fix it.. and she noticed that we have some water drainage issues on the other side of our house… That’s a whole other can of worms to work on in the near future…

Even though it’s actually unseasonably cool, I’m enjoying it. So is my skin. Everything seems to be healing a little better, except for that one spot on my arm. It’s flared up on it’s own for no reason again, but the rest seems to be on the mend. I’ve been able to rest more too, because we had so little planned for this week.
Like, yesterday was awesome – I woke up, had coffee, and read on the computer for like 3 hours. Then I had lunch, watched TV, went back on the computer, and found some bookmark templates. I started reading a new book a few days ago, and wanted a nicer looking bookmark, but I’m too cheap to buy a really pretty one… so screw that, I can make one! We have all this scrap-booking stuff and fancy paper, so I figured I’d find something to put together…

And this is how they turned out! The squares with the googly eyes are corner bookmarks; I’d never seen them before, but they just slide over the corner of a couple pages and hold your place just as well. Plus they’re super cute; I can’t not smile when I see them. I guess I only needed one bookmark, but I was having fun playing with all the paper. I’m giving my Mom the pretty pink one to use, and I’ll just hold onto the other one…
Afterwards, I just chilled with my Mom and brother, and then read until bedtime. Yes, I didn’t do anything responsible or important all day long – and it’s a beautiful thing!
Everyone needs some time off sometimes… People might think, because I’m sick and am not working, that every day is a day off, but it’s not. Taking care of myself is a full-time job, and then tack on all the appointments and routines. Routine is the simplest way to describe it, but it’s basically micro-management. I have to do things a certain way so that I can stay functional. I do things in a certain order, at certain times, because that’s the only way it works around my symptoms and stuff. It sounds a little OCD-ish, but I promise, it’s all fully grounded in my wacky reality.

But like I said, with some more free time, I started a new book, and picked out a bunch of other ones for a summer reading list… so here they are:

Lone Wolf – Jodi Picoult
Handle With Care – Jodi Picoult
Salem Falls – Jodi Picoult
House Rules – Jodi Picoult
In Cold Blood – Truman Capote
The Lucifer Effect – Phillip Zimbardo

If you can’t tell, I love Jodi Picoult. Her stories and writing style are amazing. Her books are always page-turners; I never want to put them down. I’m already half way through Lone Wolf, and like all her other books I’ve read, it’s great! The more of her books I read, the more I wish she narrated my life. Her language, and the expressions she uses seem to just really reach me, and the content of her stories is so interesting. She covers deep topics and really hard life experiences that you may not normally even think of, but she makes them real, and human, and personal. I love her books so much more than movies… TV sucks.
The book by Truman Capote is supposed to be really good, but I don’t know much about it. It’s a crime novel, and covers the investigation and court case. I’m really into crime and legal novels, fiction or not. Jodi Picoult’s stories are often legal dramas, too, and even though they’re fiction, she has an awesome team of legal fact-checkers that make sure her plots stay realistic. This Truman Capote book may be a little slower or more complex, because it’s non-fiction, but I’d still like to check it out.
The only book on that list that isn’t a story, is the one by Phillip Zimbardo. He’s pretty cool; he’s probably my favourite psychologist, and a total genius. He’s the one who conducted the Stanford prison experiments, which although now they’re probably unethical, revealed a butt-load about human nature. This book apparently covers the findings from those experiments, and explains how normal people can basically turn into monsters under specific conditions. I’ve used this book as a reference for school papers, but haven’t found the time to read the entire thing; what I have read is fascinating, though.

 

Something productive that I did, and feel pretty good about, is planning out our trip to Toronto next week. We have to get down to the North end of the city, and then take the subway to one of the hospitals. Then when we’re there, we have a total of 12 – YES 12 – different appointments to go to in 4 1/2 hours. It’s going to be crazy! All 3 of us each have an ECG, a chest X-ray, and an echocardiogram, then the final appointments with the specialist. On top of that, we have to try and make it out of the city and back home in rush-hour, cottage country traffic, for my brother’s playoff ball hockey game.
Now, if you haven’t figured out through my intense love of nature, and peace and quiet, I’m not exactly a city person… I don’t like noise, crowds, etc. I’ve only been to Toronto a handful of times, and only rode the subway once. But, here’s where the research skills from university come in handy! I mapped out our route to get down there, and then our subway route (with no transfers, to keep things simple), and mapped out our way around the hospital. My brother has taken the subway more than I have, so he’s going to help with that a little, but I feel so much better about having a plan. We still may not make it back for the hockey game, depending on how bad traffic is, but everything else should be pretty simple.

As for today… we already went out and did errands and visited my Nana. She’s doing good, and eating a lot more – she went through a can of Pringles in 2 days! I know that’s not a whole lot, considering I could eat a can in one sitting, but for her – she’s kickin’ ass!
I did my MTX shot once we were home and settled, and it went well. We’re going to have steak, potatoes, and mushrooms tonight for dinner, and surprisingly, I’m looking forward to it. I’m not a big red-meat person, but they’re awesome quality steaks that my brother got from his work, and my Mom cooks them perfectly.
I was thinking I might make another bookmark out of a cartoon template I found, if I get bored later. Besides that, I wanted to paint my nails this afternoon, and have a bath. It’s looking like it’ll be a nice, relaxing day, again.

Stay

“All along it was a fever;
A cold sweat, hot-headed believer.
I threw my hands in the air, and said, “Show me something,”
He said, “If you dare, come a little closer.”
Round and around, and around, and around we go…
Oh, now, tell me now, tell me now, tell me now you know…

It’s not much of a life you’re living;
It’s not just something you take – it’s given.

The reason I hold on,
Oh, ’cause I need this hole gone.
Funny, you’re the broken one, but I’m the only one who needed saving.
‘Cause when you never see the light, it’s hard to know which one of us is caving.

Not really sure how to feel about it -
Something in the way you move,
Makes me feel like I can’t live without you.
It takes me all the way;
I want you to stay.”
- Rihanna ft. Mikky Ekko

National Behcet’s Disease Awareness Day

Well… no one should ever ask me to represent or do some sort of activism for this disease, because I sort of forgot when the awareness day was…
Scratch that – I didn’t only forget when it was, I forgot we had one.
Sadly, it’s not really like it’s that big of a deal. The fact that it’s National Behcet’s Disease Awareness Day, doesn’t make much of a difference to any one. If it weren’t for some friends on Facebook, I wouldn’t even know about it myself! It’s like “Great, all 100 of us shared the same web-link between ourselves!” So much for spreading awareness…

The only thing I am aware of today, Behcet’s – wise, is that I’m having my ass kicked by the summer weather. I cope decently throughout the day with nagging symptoms and such, but last night I had a bit of a mini-breakdown.
The best analogy I can think of is a dog in a cage, being poked with a stick. Every symptom is another poke. The dog sits in the cage, and is not exactly happy, but can tolerate the pokes if they’re relatively spaced out… But if you poke the shit out of the dog, it turns into a Tasmanian devil.

Well within a couple hours last night, the skin on my chest, shoulders, neck, back, arms, and arm pits just started burning. Not just like a sun burn, but as if you scratched a sun burn really hard. Oh, and that’s besides all of the sores in those areas that were already inflamed and angry from the sweating and heat. So, I went to go have a shower… best way to stop my wicked-insane sweats? Is a plain, cold shower. Yeah, it’s not really enjoyable, but it seems to settle my skin down, and relieve the sweating briefly.
But, funny thing lately, is that it seems some of my skin doesn’t always tolerate the water well. Some sores that are healing with a thin layer of skin over them, seem to disintegrate when they hit the water… Two steps forward, one step back. Okay, fine then. Before the shower I thought my arm pits were just sore like the rest of my skin, but once it hit the water, it’s like the skin turned raw. I had big red welts all under my arms… and with the sweating? Oh, God, that shit stings like a bitch! And wait, there’s more! I’ve had this problem before, but not for a while – there’s a patch of skin by my tailbone, basically right above my butt crack.. It’s not my butt crack, but it’s like a line of skin above it turns red and starts to split open. Are. You. Fucking. Kidding. Me? Behcet’s is actually tearing me a new ass crack? Wow.
Now I’m out of the shower, and really cranky… In the middle of talking with my Mom, I get a sharp pain in the side of my cheek. Guess what? A blister the size of a pencil eraser just popped.. It wasn’t painful before, but now that there’s a big chunk of skin flapping there, with a crater underneath… Sounds delicious, doesn’t it?

At this point, I just started crying. Why? What did it? I wanted to eat popcorn – the movie store popcorn that’s extra salty… That’s not happening. I was looking forward to watching a movie and munching my way til bed time, but now I’m stuck on cantaloupe and yogurt.  Yes, I do like both, but neither sound yummy when all you want is your popcorn, and the bag is in the other room, but eating it would be the equivalent chewing on salty gravel. I bitched a little to my Mom, and then still watched TV and enjoyed my mouth-friendly snacks, but it’s really the frustration that annoys me. I try so hard to not let this dumb disease get in the way of things, whether it be because of symptoms, or how those symptoms effect my mood. I was more upset at the fact that I ended up so cranky, when I was totally fine before everything flared up. I just don’t like the way that I can be fine one moment, but then these things totally out of my control happen, and it completely changes my frame of mind, whether I like it or not. Most of the time I manage okay… I stay pretty positive.. but like that dog in the cage I was talking about… if you keep poking it, one of these times it’s bound to freak out.

So this morning I still felt kind of crappy. My skin was almost burning as bad as last night, right from when I woke up. I still have new sores forming in my mouth, and the one from last night hasn’t really filled in. Usually they heal pretty quick, especially overnight, when there’s no talking or chewing happening. Besides that, my skin just looks horrible. A lot of the sores just look like acne, but they’re painful, and well.. not just pimples. They sort of look like little white heads, but they actually behave and feel more like blisters. Some are just on the surface, but others are harder and deeper. It’s hugely annoying in the heat too, because I’m trying to stay cool in  lighter clothing (like um, a tank top), but that means my chest, shoulders and back are exposed, and it sort of makes me self conscious. It doesn’t bug me if I don’t pay attention to it; it’s not like during the day, I’m preoccupied with the way I look, or what other people see. I really don’t think about it much, unless I pass a mirror. Just don’t look, and we’re all good.

I’m really tired now. It’s too late in the day for me to have a nap, because I won’t be able to sleep tonight. It’s weird; I’m too tired to do anything, but if I sleep during the day, it messes up my body’s natural clock, and I just feel worse. It’s really humid out today, so that may be what’s making me feel worse. Tomorrow I have physio, and I’m not looking forward to it… I hate it in the heat, because they have to touch my neck and back, and I just feel sticky and gross. But, my Mom and I have a lot less planned for this week, so hopefully we can both rest a bit more. We’ve been trying to sleep in a little, instead of always getting up early and starting on a list of shit to do. Mom doesn’t really sleep in, since she doesn’t sleep much to begin with… but she stays in bed a while longer, and I sleep in more.

“Miraculously recover or die. That’s the extent of our cultural bandwidth for chronic illness.” ― S. Kelley Harrell

“Armed with my positive attitude and inherent stubborn nature, I keep my mind focused and my life moving forward. I stop to rest, pout and even cry sometimes, but always, I get back up. Life is giving me this challenge and I will plow through it, out of breath with my heart racing if I have to.” ― Amy B. Scher

Sick of being sick, and other ramblings

I’ve wanted to write the past few days, but haven’t been able to organize my thoughts and find a good time. I guess now is as good as any, since I’m stuck in the shade on the back porch, while my Mom works on her car. The front of our yard doesn’t get any shade until later in the day, so there’s no where for me to sit and keep her company while she works.
That whole thing sort of sucks any way. I was pretty annoyed with it yesterday too – that, and it, being the limitation of staying out of the sun, and not sweating.

First, I can’t be in the sun because of the Methotrexate. That shit makes your skin burn before you even notice – but trust me, you feel it later. Even with no visible sun burn, your skin just stings. Then, it also makes you just generally ‘sensitive’ to the sun. What does that mean? That sun exposure makes you feel like shit.
Second, from what I’ve heard, read, and learned on my own, Behcet’s Disease doesn’t react well with the sun, either. It’s never been proven, but for a lot of people, being in the sun and/ or heat makes the disease a lot worse. Not only does it aggravate my skin, but it also just makes me feel a lot more tired, gives me a headache, and adds to feeling like crap.
Third – I can’t sweat. Do you know how hard that is for me? Some days I can’t even get up and head to the washroom without starting to bead-up and drip, let alone get out and enjoy washing the car. Here’s another mini-medical lesson: there’s a couple types of excessive sweating, hyperhidrosis, and diaphoresis. The first, is just general excessive sweating that can occur any where that regular sweating patterns do, like the underarms, hands, forehead, etc. The second type, diaphoresis, is the type I experience. This kind mainly involves the head, face, neck, and chest, and resembles a sweating pattern associated with a fever or physical shock. I don’t even have to be doing anything to bring it on – it just happens for no reason sometimes. According to my doctors, it may be happening for a couple reasons; either a) my body is working so hard just sitting there, that I end up breaking an unusual, sickly, sweat, or b) it’s neurological, which we’re kind of investigating.

Besides the sweating being gross, annoying, and really awkward if I ever want to go anywhere public in the summer, it’s horrible for my skin. I get a lot of sores on my neck, shoulders, chest, and arms – all right in the sweat zone, or the dripping – sweat zone. Moist or wet skin does not heal, and moistness breeds bacteria. That’s a big problem for someone immunosuppressed with open sores. So you can see why my biggest goal is to keep my skin dry and clean, but how at the same time, it’s a huge pain in the ass.

So what am I supposed to do with myself? I feel pretty useless when I can’t follow my Mom around and help her with whatever she’s working on. I’ve been sore and tired lately too, so she stops me from doing much work anyway, even when I’m in the shade. I know she’s trying to take care of me, but feeling like a bump on a log, while I watch her run around, makes me feel lazy.
I know I’m not lazy – because I think part of the definition of being lazy, is not wanting to do any work, and putting in the effort to do as little as possible. I want to do the work, but it’s the opposite of what I should be doing… and ironically, that’s as little as possible. So it looks like laziness, but it’s not. I’m actually very busy, doing nothing.

Any who… I had my EEG on Tuesday. It went really well, mostly because the nurse we got was so friendly. Surprisingly, she’d heard of Behcet’s, and knew a little about it. We chatted for a bit, while she measured and drew on my head, and then put on all the glue and electrodes. For the rest of the test, I wasn’t allowed to talk (yes, it was hard)… and then for the majority of the test my eyes had to be closed. They ask you to blink a few times, breathe deeply for a few minutes, and then just lie there. Towards the end of the test, they put a strobe light in front of your face, and have you still keep your eyes closed while it flashes at different rates. As far as I’m concerned, it was normal and boring. I didn’t experience anything unusual, as far as I’m aware of.
The issue, with only a 20 minute EEG, is that the weird sensations I get come so unpredictably, and seemingly in clusters. They’re always very brief, but I may get a few in one day, and one a day later, but then none for a couple weeks. I haven’t been able to identify a trigger for them, either. As far as triggers go, that’s the whole reason they tell you that on the day of the test, you need an hour less sleep – apparently if you’re tired, irregularities are more noticeable in brain wave patterns.

Visiting my Nana has kind of been one of the highlights of my week, though. It’s a little lame, but we have a lot in common. One of the days we saw her, she said everything from the hips down just hurts – tell me about it! I said to my Mom afterwards, “Yes, Nana, those are called the ‘pain pants’.” It’s pretty bad when she’s 96, and I’m 21, but we bitch about the same aches and pains.
On Mother’s day, my Mom brought her a dessert cup and flowers, and I brought her a teddy bear and a card. She inhaled the dessert cup, and fell in love with the bear. She snuggled it to death, petted it, and kept telling us “now I have someone to love.” It was adorable; I seriously just want to crawl into her bed sometimes and squeeze her.

She’s been doing much better than the past few weeks, and seems to be ‘out of the woods’. Her diet of junk-food is obviously giving her enough energy, because she’s been in a lot better spirits, and even making some pretty witty jokes. My Mom told her that she was going to wash the car later, and instead of just nodding or something as usual, Nana replied “Yeah, I think I’ll do mine too.” I love sarcasm, but it’s even better coming from an almost bedridden old lady – it’s that much funnier.

The best part, by far, was when we asked her how her new teddy bear was doing… She said ‘good,’ but then told us that it’s a male. Alright, Nana, if you say so… But then she turns the bear around, and importantly points to his little stub of a tail, and nods insistently as if she’s showing us his little teddy bear balls. Wow, now I think she’s got too much time on her hands to think about stuff… If that weren’t enough, she then cocks her head to the side, and slyly says while she snuggles and pets the bear “Now I have a male in my bed..” Her, my Mom, and I just burst out laughing.. We started joking around telling her to behave, but I guess that’s the most ‘action’ she’s gotten in a while.

It’s easy to tell when she’s doing well, because she automatically looks brighter. On a couple of her good days, my Mom has been taking pictures. When we showed her them, she just blurted out, “Oh God, she’s ugly!” Of course we tried telling her how awesome she looks for 96, but the way she said it was kind of funny. She kept asking if she’s going to be 100 this year, since her birthday is next month. When we told her she’s only going to be 97, she was pretty disappointed – she said she feels like a 100, but that she can’t really remember how old she is, anyway.

And as for me, now… I don’t know what I’ll do with myself today. I woke up this morning feeling like mega-crap. Not the usual crap, but like somebody beat the shit out of me last night. Yes, break out the ‘pain pants’ – my legs and hips just feel like a giant bruise.
See, my brother had a wicked cold the past few days, and I’ve been avoiding him like it’s my day job (wait, that would mean between trying not to sweat and avoiding him, I’d be working 2 day jobs – aren’t I efficient?). Last night, it was like a wave of fatigue hit me and I was downhill from there. By bedtime, I was achy all over and had a pressure headache whenever I moved or laughed too hard (what a rip-off is that – when laughing makes something worse?). Obviously, I was kind of freaked out, thinking that this could be the start of whatever he had…
Thankfully, I woke up this morning and I’m not sick, in the sense of having a cold… But it’s not like anything lifted, either, even with 11 hours of sleep. I have the same headache, still want to go back to bed, and am even more sore than last night. On top of all of that, there are other nagging ‘symptoms‘, that I’ll spare everyone the details of, that haven’t lifted or improved in the past 2 weeks. It briefly seems like it’s improving, but then goes back to where it was. So, after coming downstairs and talking to my Mom, the first thing I did was cancel my physio appointment for today. They told me a few weeks ago that if anything comes up, or I’m not feeling well, to not be afraid to call and cancel… Well, now would be a good time.

Unfortunately, it’s as if the increased dose of Prednisone has only paused the progression of my symptoms – usually it clears them up. This time, it’s like it’s only stopped things from getting worse, but they haven’t gotten better, either. At this point, I don’t think I’d even be willing to take any more of that shit. It’s so bad for you! And the side effects suck, and get worse with higher doses. It’s awful for yours bones, blood sugar, liver, kidneys, adrenal glands… fuck, the list goes on. Prednisone can be a life saver, and works so quickly, and so well, with so many different conditions, but it’s never a long term option. It’s great for getting something under control, or reducing acute inflammation – but because of how harmful it is, it’s only supposed to be used briefly. Hey, I’m going on 2 years here, with rarely being below 15 mg, and it’s the only thing that seems to help. Doctors usually want you off of it within the first year of treatment, with the goal being that another immunosuppressant is substituted in to control the disease. These drugs are still harmful, but the damage accumulates much more slowly and much later than with long term steroid use. Well, I’m just on both – but the MTX isn’t working the greatest, so I’m still stuck with the steroids.

Like I said, I don’t think I’m willing to take more. The risks and pain in the ass of even more steroids would be brutal, and who’s to say that they’d clear up my symptoms, or that we’d be able to maintain any ground if I ever wanted to get off of them or reduce the dose? That’ the problem: you reduce the dose, and everything comes back. I’m just about at the point, where I say ‘no more nasty drugs.’ My symptoms are annoying, painful, and debilitating in a lot of ways, but they aren’t life or organ threatening (thank God!) So how far is reasonable to go, medication and risk wise, to reduce the disease activity? In a nut shell, if I were to take more drugs, the damage from them could out run the damage from the disease, so it defeats the purpose of trying to get things under control. If my life, or organs were at risk, obviously taking those drugs and assumed risks would be the lesser of 2 evils, but for now, that’s not the case. The disease is somewhat progressive, so if it’s not stopped, it may eventually get to that point, but for now it’s just an uncomfortable waiting game.
In the meantime, I’m sort of thinking, “let’s just make me comfy.”  I wonder what pain meds are out there, or washes or creams… I haven’t ever read of something that helps, but more ‘roids I don’t think is the answer. The way I see it, I’ll either eventually start to get better, which would be amazing, or I’ll slowly get worse and need the drugs I don’t want. But while we’re waiting to see what happens, could somebody gimme a break? And by a break, I mean some Tramacet... or something stronger might be cool, too.

I guess it’s a good thing I’m off on summer holidays, all things considered. This post got a lot longer than I intended. For someone who doesn’t do a whole lot, I sure have a lot to whine about!

“It is in moments of illness that we are compelled to recognize that we live not alone but chained to a creature of a different kingdom, whole worlds apart, who has no knowledge of us and by whom it is impossible to make ourselves understood: our body.” – Marcel Proust

“My illness has taught me something about the nature of humanity, love, brotherhood and relationships that I never understood, and probably never would have. So, from that standpoint, there is some truth and good in everything.” – Lee Atwater

Survival of the Fittest

As much as I love the spring and summer, the season change is definitely bittersweet.
It was right around this time of year in 2005 that my father first got sick. When I say he ‘got sick’, I’m referring to the first manifestations of his paranoid psychosis. I don’t want to get into the whole story, because truthfully, the memories plague me enough, but that summer was basically the year my life changed.

“We were exiles from reality that summer. We were refugees from ourselves.” ― Chris Cleave

And I think I can finally say, that I don’t really want my ‘old life’ back. Calling it that is sort of cliche, but it’s the only way I can describe it. I don’t know where I was headed at the time; I was only 13, but my life seemed perfect. Now, I feel like if I were to be magically thrown back into that untouched world, I wouldn’t even know how to function. I’ve developed a knack for working under pressure – persevering through chaos. It would seem unfitting; not boring, because I feel the the peace would be a gift, but foreign enough to disrupt everything that’s become so natural and familiar to me, however uncomfortable it may be at times.

The spring and summer, though, trigger memories that I forgot I had. I normally push the snap-shots – bits of a thriller movie I never wanted to see – so far out of consciousness that they don’t effect my day-to-day actions. But now, even in the glory and the beauty of nature coming back to life after the winter, I feel swallowed up by something ugly I don’t want to look at.
Maybe that’s what bugs me the most – how much power something as simple as a season change, has over my mood. Everything feels like a trigger: the smell of the breeze, jets streaking through the sky, the sound of a motorcycle, the fresh brightness of the new leaves…

“After all, when a stone is dropped into a pond, the water continues quivering even after the stone has sunk to the bottom.” ― Arthur Golden

And as much as I try to forget that any of it ever happened, when these guerrilla, mental Polaroids pop up, for a split second I feel drawn to them. It breaks my heart to examine them more closely, but I guess that’s part of making sense of your past. You’d think that I couldn’t know them any better; I was there, I experienced it… But it doesn’t feel that way sometimes. It’s so surreal, as if it were just a nightmare.
But the memories prove it’s real… That, and the fact that we’re still here.

“There are wounds that never show on the body that are deeper and more hurtful than anything that bleeds.” ― Laurell K. Hamilton

Anniversaries suck. Yesterday, was the one year anniversary of my car accident. The years that pass feel like milestones, but the present similarities to the past ignite the same anxiety that was there the moment it happened. Mornings that I wake up to go and get coffee, I’ve felt stressed, and can’t pinpoint why – why the moment feels off, or why I feel fear for no reason… Or how it feels like I was here just a few days before, and something bad happened…
It wasn’t a few days ago, though. It was a long time ago; a year; 365 days.

I’ve been told anniversaries only have power if you give it to them. I don’t think that’s entirely true.
I don’t dwell on the days, as if I owe it to this day to mourn and remember. And I try not to fret over it’s slow approach, one calendar square at a time… but there’s something about the place in time, that gives energy to the anniversary that I don’t have any control over. It’s in what you experience with your senses, the mere feeling of the time of year. The calendar date has very little to do with it, except for a label and name to call it by.
Unfortunately, the memories are associated with the same part of me that was so excited for the summer. That same feeling of waiting for warmer days automatically brings a sense of fear and tension for no other reason, than neurologically, the amazing plasticity of the brain has chained them together.

But with this milestone, of the 8th season change, I also look back at how far we’ve came. I remember the years when I didn’t know if we’d make it, if I’d make it. I still can’t picture my future well – as if it’s a blank slate where I don’t even exist, but I can at least rationally forecast my potential, and see that someday, I will be somewhere.
I feel like we’ve fought a war that everyone else forgot about; like I know, or have seen too much... That even to explain it and share, wouldn’t make any difference, because it would be so bizarre and foreign to any one else who wasn’t there.

“Sometimes a breakdown can be the beginning of a kind of breakthrough, a way of living in advance through a trauma that prepares you for a future of radical transformation.” – Cherrie Moraga

It’s exhausting and it’s no good for me. A few cooler days to break up the first mild heat wave of the year gave my poor skin a break, but it’s as if my psyche had different plans. Instead of recuperating, I feel just as tired. Yesterday I had a nap, and then got 11 hours of sleep, but I still feel as if I’m in a haze. It makes me wonder if what my mind goes through is just as hard on my body as what it goes through, on it’s own. I’m sure they’re linked – one feeds the other, like a cycle. Normally, I can break the cycle; keep my mind in check, so that I’m only ever fighting my wacky immune system, instead of battling both.

“Just as the body goes into shock after a physical trauma, so does the human psyche go into shock after the impact of a major loss.” – Anne Grant

Some people believe there’s a link between trauma and auto-immune disease. It makes me wonder.. is it really possible for outside events to make the body turn on itself? Is this a form of self-destruct, where my body is trying to terminate a threat so big, that there’s nothing left to attack but itself? Maybe my body has lost sight of what the real threat was in the first place? Confused as to ‘who’ and ‘what’ are actually safe, even the closest things you’ve always known.
I’m not sure. I don’t really care, either. I feel like somehow, I’m still fighting. I’m still surviving, but I’ve also learned to thrive, through that, so I guess that’s all that matters.

“If you are going through hell, keep going.” ― Winston Churchill

17 reasons why my Mom is freaking awesome

1. She understands me without me having to explain myself. She sort of just knows, or gets it.
2. She’s probably the hardest working person I know.
3. She’s incredibly strong. I can’t even describe it; her struggles make me sad that she had to suffer through them, but proud to say that she is my Mom.
4. She helps me with everything – from taking care of my car, to keeping me grounded, to just silly little stuff. The other day, my skin was horribly irritated, sore, and starting with new lesions from the intense sweating, and I was about to lose it. We  were trying to come up with a solution, where I could wipe the skin on my face gently, but with something absorbent and discrete. She took the time to pick out old, cotton, T-shirts with me, and cut them up, so I’d have a whole stash to last me a while. Now I can carry something with me in my purse. Kleenex is a joke, the sweat pours off of me, so I literally need a rag… It just meant a lot that she a) understood how upset and frustrated I was by it, and b) didn’t just listen, but helped me find a solution, and then make it really happen.
5. She’s just as silly as I am. I don’t have to hide my wacky thoughts around her.
6. She’s my best friend. She’s like a teammate; she’s always there for me and we do pretty much everything together.
7. She’s built an amazing life for us. Twice.

8. She never ever stops. I know I tell her she needs to slow down, do less, or take a break, but she does what she has to. I don’t know if I could keep going the way she does, but somehow, with her leading, I manage to follow.
9. She takes better care of me than I do. Sometimes I’m just to tired to do things for myself that I know I should, but she makes sure that if I need something, I have it.
10. I never get sick of her company. It’s insane. I don’t know how I could live away from her. We don’t always do the same thing, together, but I’m rarely home alone. We each do our own stuff, but just having her around makes me feel more at home and at ease.
11. She’s taught me basically all of the important things that I know… Mostly, that if I don’t know something, I can find out; that’s probably why I love learning so much – is from her making sure I could explore and learn and be curious about what ever interested me. I’ve never been limited that way, and I don’t feel like anything really is ‘above my head’ or too complex to understand.
12. She doesn’t lie. Ever. Except at Christmas and Birthdays.
13. She does the work of 2 parents. Somehow, even since my Dad passed, I haven’t missed out on any regular experiences because I only have 1 parent. Instead, she’s gone above and beyond. Okay, she can’t be a Dad, but she’s a billion times more than the average Mom.

14. She’s never doubted me. Even when I don’t think I can do something, she still knows that I can. Even when no one really believed me when I first started getting sick, because no one could figure out what was wrong with me, she still did, and never thought that it was just me.
15. She just makes me happy. She just has these little things about her that make me laugh or smile.
16. She listens to me, about everything – and trust me, that’s a lot worse than what I share on this blog.
17. She gives the best hugs.

“Life began with waking up and loving my mother’s face.” – George Eliot

Mojah’s new ‘do

Yesterday, Mojah went to the groomers. He was all nice and fluffy, but, as cute as that is, it’s not practical for the summer weather. He’s been really hot outside, and he’d be able to enjoy it a lot more with less hair.
So every spring, he gets sheered like a sheep. Okay, it’s not that bad, but his hair is pretty short at first. He’s way cuter with more hair, but his wacky personality, and the shorter fuzz kind of suit him when he’s running around the yard like a maniac…

Here’s the before pictures:

Mojah really is a mental case… at the door, before leaving to go to the groomers, he kept jumping about 4 feet in the air, trying to nip at Mom and hold onto her, even though we were all leaving together any way. We get in the car and Mom put her window down a little, and Mojah would not take his nose out of the crack, even once we started driving faster – full wind at like 55 km/h, right up the nostrils. So Mom put her window down more, so he could enjoy the breeze like a normal dog and not have to jam his face into the window – but instead he puts his whole fluffy head outside the car. It was really cute, I was trying not to laugh at how funny he looked while I was driving. His eyes were all wide, and his ears were flapping in the wind – I told my Mom that he probably thinks he’s Captain Mojah of the S.S. Corolla. Then we finally get to the groomers, and Mom tries to get out of the car, but the dog just starts scrambling and crawls over her, and will not get off the seat. Even when she tried to pick him up, he started clawing at me and the air, trying to stay in the car… sorry bud, but it’s for the best.

The house is awfully quiet without him, though… I noticed it right away, within the first few minutes. Things just aren’t the same when he’s not around.

But, here, is the after picture:

I lied – he’s still just as cute. His floppy ears and big, puppy-dog eyes make me melt.

“Dogs are our link to paradise. They don’t know evil or jealousy or discontent. To sit with a dog on a hillside on a glorious afternoon is to be back in Eden, where doing nothing was not boring–it was peace.” ― Milan Kundera