Samtagious!

Please forgive me if you notice any odd activity while you’re here over the next few days, I’m in the process of installing a proper gallery for my photos and art and I’m looking at possibly adding a microblog type thing as well as renovating my web novel (which is a fancy way of saying ‘my memoirs’ site) I hope to have everything functional in a few days to a week and it *shouldn’t* interfere with this section of the site but.. just in case…

February 24th I went in for my Remicade infusion, as scheduled.  It may or may not be my last, I won’t know until I speak with my GI doctor this Thursday, March 11th. My appointment with him was supposed to be March 5th but he was called out for something and I had to be bumped. It sucks but there are three counties relying on two GI docs in my region and one of those doctors is a spiteful and dangerous man, thankfully I have the other doctor, now anyway.

As some of you know: the Remicade is starting to bottom out, in essence it is crashing, hard and fast. Its not working as it should. This means one or three of any number of possibilities: I may need surgery in the second from worst case scenario (which could quite easily turn into an absolute worst case scenario all on its own, actually) another possibility is that they will tell me again that I couldn’t handle the surgery anyway, my system is very depleted, I’m underweight, somewhat malnourished, chronic low blood pressure and also severely anaemic. Those possibilities really tend to suck.

What I’m hoping is that we can somehow jump start the Remicade and force it to work, or at least force my system to acknowledge it. My nurse suggested another possible drug regime that calls for continued Remicade infusions, higher dosage and closer together: 6 week intervals instead of 8 and the max allowed dosage for my weight, a steady daily routine of prednisone in moderate to high doses, and another drug that I can barely pronounce let alone spell: methatroxinate? Or something that sounds like that, I’m sure my GI will know…

I’m scared, confused, exhausted, and I’ve hit my personal wall. I’m just too tired to do much more. I’m a strong grrl, yes, but nobody can do this kinda crap for years on end and not show some wear and tear. Its just not possible. I’m physically showing the strain as you can see from the photos in this post, which you can enlarge by clicking them, if you really want to see it close up. I’m a scrawny washed out mess. I know it, but usually I have L’Oreal and Revlon to help me hide that shit, that day was just a clinic day–no point in getting all made up to go sit in a chair plugged in to a bag of bio-shit.

Speaking of that bio-shit above: there is $3000 worth of meds in that bag I’m holding, it takes 2-3 hours to jack it into me and the rest of that day/night and usually all of the next, sometimes another too–I’m in a bit more pain than normal because the cramps while it sets in are horrendous. Everything is rearranging, the inflammation is going down at lightning speed and generally it feels like my insides are imploding.

Canadian Health Care is Universal in that we have necessary surgeries and all tests and diagnostics covered by Medicare, we have bones set, heart attacks treated, etc. But we do not have a drug plan, the only time we’re covered by Medicare for drugs is during a hospital stay. Anything you need for “home use” is out of pocket, unless you can afford something like Blue Cross which costs a shit load more than most working folks can afford. If you’re fortunate then your company has some sort of prescription plan and you can get teeth fixed, eye exams, glasses and antibiotics when you need them, if not–you are shit out of luck.

Some drugs aren’t covered even by insurance plans, mine isn’t, and I had to jump through hoops to get the Remicade that I’m on now. It did make a difference for months and so we’re confident that we can work it so that it will make a difference again but had I not received it when I did–I really wouldn’t be here now. I had to go through miles of red tape in order to get government funding just to get this drug, and it did save my life. The important thing is that I had that option, even if it did take forever and a day. I think everyone should have that option.

If you live in a place that doesn’t have health care and you’re not sure how you feel about the topic, just remember this post, and remember that I’m here because my government does have a plan (though seriously flawed) but its something and without it–considering that I am the dreaded “preexisting condition” that insurance companies prefer to let die and I couldn’t afford insurance anyhow–I would most certainly be dead, and I can only thank my fellow Canadians and their dedication to their fellow countrymen, for the fact that I am still here today.

*Disclosure: I was in no way induced, coerced, requested or compensated to write this review, by monetary means or otherwise however I was given samples by an acquaintance and our mutual friend asked for my honest opinion, because of that, and the quality of the product, I chose of my own accord, to share this review here with you today.

I was not familiar with Xe or the Xocai family. I’d actually never heard of it until my friend got me to watch a video that his friend had made. You can see that video here: Xe Chilly Dipping in Atlantic Canada, it was filmed here in my city, at a beach that I happen to adore!  Though I’ll admit to liking it far more when the months happen to be balmy and sticky sweet ;-) July, August, you get the idea!

Anyhow,  this sample package contained several little packets of “healthy” chocolate and a few cans of the Xe drink itself.

Now, the chocolates were the first thing that I tried. They were delightful, I love that they taste like dark chocolate, I’m not a fan of sugary “American” varieties like milk chocolate, etc.

They did not melt in my fingers and make me into a sticky frightening mess, that is another ginormous plus. As a mom, I’m already a freakin’ sticky mess, I don’t need to add to that. They’re fast, pocket or purse treats, they’d fix a fit of necessary escapism in the blink of an eye, that is a good thing.

They absolutely did not taste like “health food” chocolate which is a huge bonus and enough to make even me take pause. I hate healthy chocolate usually as it tends to taste like the doggy treats I stole from my mutt when I was a kid, remember those things that looked like rosebuds, smelt vaguely like chocolate but were a weird carob and whey mix of absolute yuck? Every healthy chocolate I have had tastes like that, except these–these I could buy when cheating on a diet or craving a real mouthful of real deep full bodied cocoa. Yay, amen: five freakin’ stars right there baby.

———————————

After I chilled the Xe drink, I was tense, incredibly so. Most of my experiences in the energy drink world have been pretty positive (or at least not horrible) but there are a few exceptions: a heretofore not to be named poison which gave me a horrendous headache, made me sick to my stomach and did not, as claimed, give me any sort of flying ability, as well as a drink which should have gotten me a Grammy, an appearance on the cover of The Rolling Stone or at the very least–a groupie and a few posters to hand out–ugh, it just gave me a bitter taste in my mouth and a bad case of heartburn. Those two hate me, the rest are pretty much OK.. I digress…

Xe at first sip reminded me of those gummy chocolates that Ganong hides in the corners of their Xmas boxes, its very rich, very fruity, it isn’t thick (its quite light actually) but somehow it maybe just tastes filling?

I drank half a can on its own to get a true feel for it. It was good but I wasn’t in a sweet mood and it was a bit of a shock. The cacao undertones were interesting, not cloying nor overpowering, just–interesting, in a good way. The drink holds to its claims of natural fruits too, they didn’t taste synthetic at all, they really did taste very natural and un-futzed with. I liked that, a lot.

I drank the second half of said can on ice, I’m weird like that, I’ve always preferred soft drinks and/or energy drinks swishing over a crunchy glacier in my glass. That seemed to mute the sweet a bit and made the whole experience rather delightful, indeed.

A few hours after drinking it, I still hadn’t completely made up my mind on it but this morning it hit me full force. I like it quite a bit actually. As with any energy drink, healthy or otherwise–you don’t want to like it so much that you want to drink ten cans a day but you need to like it enough to at least want a few. This did that.

I woke up with a rumble belly and a bit of a thirst and Xe was literally the first thing that popped into my head. Did it seep into my conscience and tickle my happy bone? Maybe it did. Also, because it does have a good nutritional score–maybe my body had realized that it had something it somehow needed or desired. I’m anaemic and the best way to describe this feeling is the feeling I get when someone is cooking a good steak, my anaemic bits smell it and sense something in it that makes them feel good. Some part of me that is deficient was going through that same type of Jonesing thing this morning for the Xe…

So, verdict is: either that stuff is pumped with some sort of slow release heroin that makes it irresistible or it really is “all that” but yes, I’ll easily give it five stars based on the fact that after a night of uneasy sleep–it crept into my brain before coffee and that my friend, is no small feat.

*Note: I cannot make any claim to the healing properties of this product, either medically or otherwise but I’ve heard some testimonials as to its benefits and I’ll leave that for you to consider.  This product is not medically prescribed or endorsed and should be used as a supplement to an already healthy diet. It is not a cure or a medication and if you do suffer any health issues–you should always consult with medical professionals regarding any forms of treatment and/or therapy.

Please visit: Ms Andrea Cyr at her blog: Paid for By Chocolate! or follow her on Twitter (@AndreaCyr) to learn more! Also, she’s pretty nice so you should even pop on over just to say hello :-) Thank you Andrea, for giving me the chance to try this tasty and interesting product, and thank you Greg (@mrchips13) for the delightful (and tasty) introduction. It has been my pleasure!

• Xe Chilly Dippin' in Atlantic Canada: http://bit.ly/90WgLP Locals living it up! #
• I'm in & out folks, sorry for being incommunicado lately, I have a serious GI appt. on Friday, hopefully we'll get some issues resolved.. #
• Today is for self-healing, I'm sipping on divine elixirs from @javamoosecoffee and contemplating the promised land :-) #
• good day loverlies! I'm here, sorta. My Doc thing got rescheduled — grrr… next week now, maddening! #
• If you're a fan of digital art–I have a tumblr now where I've been hiding away my works: http://bit.ly/du6wzd #
• nd a blissful g'day to you @javamoosecoffee I'll be up to drain you soon! #livelifeuptown #
• I have a client looking for good web cam streaming services, anyone have any suggestions that I can share? #
• Curiously, the BBM lockup issues are NOT resolved by a total wipe & clean reinstall. Anyone else have the issue? #blackberry #bb #
• Oh I SO want this: Radical Draw Drawing app for the Storm http://bit.ly/9IjNf9 please make one for the 8900? #blackberry #bb #
• Shape free multiple IM client for BlackBerry http://bit.ly/a0lSbb looks good, doesn't it? #blackberry #bb #
• Social Beat http://bit.ly/aQUNqN looks interesting, anyone tried it? #blackberry #bb #

• So I am running far FAR behind due to being utterly knocking on death's door, c'est la vie! Annnnyhow… #
• I was thinking some Alice in Wonderland themes b/c I lust after that film, the original story was my fave as a child. Disney may sue ;-) #
• It seems that @ourblackberry has been hijacked by spammers: if you're following them–do not click links in DMs.. #
• I adore when you block psychos & they keep linking directly back to your tweets to see if you said anything more *waves* hi activist cretin! #
• Annnd I am NOT arguing with any more insane people today, you believe what you will, my Faith is strong and won't be shaken by nutballs. #
• Daily Kos: Please Help: Utah defines miscarriage as "criminal homicide" http://ff.im/-gvfCK *via @sexgenderbody #prochoice #fem #
• Supper tonight came straight from a trailer park in 'bama: banana milk, sweet 'tater fries and sliced fried Spam. #
• Replaced my Zune 4G w/a 120G last night, hubs loves me <3 Oh and Mac boys: Pls don't harsh on me, its nothing personal but I abhor Apple! #
• Some may find it hard to believe/accept but I appreciate the Zune far more than the ipod, I found the ipod flimsy and unattractive. #
• Chile, Japan, Argentina, Hawaii & all of the affected Pacific: You're in our hearts & prayers, stay strong. Blessed Be. #

These days I try to keep my personal life separate from my online world, its all too depressing to let them mix, but I have many friends who come to this site and who support me with open arms and souls full of love. I thank them for their undying friendship and it is for them that I share and post this letter I wrote to my doctor for the sake of clearing my head. This site was once my haven, my place to let my hair down and just tell it like it is. This site used to be my personal diary and my escape from the nastiness this world can sometimes dish out.  Because of harassment and attacks from some people in my personal life–that came to an end. I’m sorry and I know I’ve let many of you down by giving in to their childish and spiteful demands. Ya know though, sometimes we have to just go with it. Sometimes, we have priorities that demand more attention and fighting for a voice is the least of our concerns, as now, this site is my escape but for other reasons and by other means.  I wrote this earlier and posted it to my private facebook account for my family, I realized on reading it over that it also answered some of the questions that you people here have sent to me in emails and through IMs, much better than any flippant dismissive 140 ever could. Please forgive me for my lapse in clarity and accept this explanation as to why I’m not quite as “out there” as I’ve been in the past. You mean the world to me and I should have been totally up front with you all a long time ago.

Dear Dr G,

Its gotten really bad over here, I must say. You know I don’t like to bitch needlessly but things have got to change and I’m willing to go to any lengths to make that happen for you see, I can see no hope of any sort of future for me if this keeps up. Crohn’s is really taking me down.

You’ve known for a while now that I was on the edge of totally quitting, the many years of this disease piling up, the past doctors who, unlike you, really didn’t try or care to try, the endless meds that did nothing at all and even the experiments that some have tried in hopes of their little cures having some effect–all to no bloody avail. I always just got steadily worse.

This time we tried the Remicade, it was wonderful, for a few months, but then (as with everything else so far) it totally crashed out. I’m finding that my symptoms are worse than ever before and quickly approaching the point of completely unbearable.

I’ll give you a rundown of the hell I am living and then sir, we can talk options.

For the past few years I could eat very little in the line of vegetables, potatoes and bits of other starchy things seemed to be the last of my garden treats however recently, I can eat no veggies at all, over cooked or otherwise. You can grind them into a paste and boil them down to nothing in a broth and still–they tear through my guts like pure acid, no digesting or absorption whatsoever. Agonizing cramps all the way.

The strictures that showed as mild to moderate in the scans have advanced to a state of near complete blockage (even to the point of showing signs of ischemia) so now I can’t eat anything solid at all. I tried some rice and even washed it down with broth, I was still up at 4AM crying in the bathroom with my head between my knees.

I’m vomiting between three and five times a day, I’m running to the bathroom at least three to five times an hour for violently painful bowel troubles and worse still–the pressure is such that only a small part is released at a time, its like putting your thumb over a faucet and turning it on full, its just not pleasant at all.

I’m losing weight like I’ve never experienced before, someone who is my height (5′7″) should by no means be in the range of 105lbs and dropping. My clothes are falling off, my muscles have atrophied alarmingly and I’m starting to show classic signs of anorexia even though I want to eat, I don’t want to be a deathly wraith, I see myself as alarmingly thin.

My anemia is at an all time bad, I’m getting heart palpitations regularly now and sometimes quite unsettling pains in my chest as well. Dizzy spells, faint periods, etc.

The fistula in my bladder (bladder to bowel)  is in an almost continuous state of serious infection, it clears up for a few days but comes back worse and more livid than before. Its not nice to pass equal amounts of bowel matter through your urethra as through other, more acceptable and normal regions. I won’t even get into the infected mucous, clots of blood, detritus and associated pain that goes with that, I’m sure you understand..

This mess is also starting to affect my menses. I’m having irregular periods, serious cramping like never before, frightening blood flow, mood swings, incredible hot flashes, so much more–you’d think by my litany that I was suffering premature menopause which I read IS a worry with serious cases of Crohn’s and IBD.

I’m afraid sir, like you can’t begin to imagine. Without your help, I am dying. I need a balanced and strong decision maker to work with me in this or nothing is worth anything really, I’m seriously willing to try anything at this point.

A long time back, before I was even at this stage of deterioration, I was told that I might not be able to withstand surgery because my system was far too weak but you must see that deteriorating like this, with no meds seeming to have any effect at all, is just as deadly as the possibility of cutting and risking a bleed out on the OR table.

Isn’t it now, finally, worth the risk? At the rate that I’m going, I’ll die either way, I’d be far happier to just die all at once on the table than drag this hell out for another two, three or even five months of being the pain filled walking dead, wouldn’t you agree?

I can’t walk more than a few minutes without the need to stop and sit for twice the length of time I’d already been walking, I’m not sleeping more than a few hours at a time be it because of pain or bathroom runs, I’m not eating more than a few drinks a day because, as I’ve just told you, I can no longer take on any form of solids, and I haven’t made love (even precariously) in over a month and a whole lot longer if you want to discuss “normal” healthy intimate relations..

My children are afraid, I am afraid. My husband has already considered options for the possibility that I may not still be here by the fall, is that a normal family activity? I’m only thirty four years old, this totally should not be!

I guess I’m just saying that we need to accept the probability of extreme measures, we need to stop thinking of the pretty and/or easy ways out and look at the fact that sometimes survival is ugly but necessary. I don’t care if there is a scar, I don’t care if I need to take extra meds for the rest of my life–at least I might have the possibility of said life, right?

Please stop trying to magically find the right balance, its painfully obvious that I really am running out of time. Just work with me, grow some balls, and honestly?

Lets just git’er done.

Thanks,
Living Dead Girl

• Oooh, I can't wait! The Official Twitter for BlackBerry is coming! http://bit.ly/9ShIg7 #twitter #BlackBerry #BB #
• I'm really disgusted w/Rogers because every other carrier on the planet has released OS 5.0 for the 8900, whats the holdup? #BlackBerry #
• .@allan1850 has your wife seen this RIM BB Twitter review yet http://bit.ly/aVC1eH I'm simply frothing! #
• And a working video of the new BlackBerry Twitter client: http://bit.ly/brVNwv #
• Annnnd a free Olympic cowbell for your #BlackBerry if you're so inclined http://bit.ly/9cuR6N #
• .@allan1850 suggestion: try mobile.twitter.com from your phone browser, not m.twitter.com, they're very very different. #
• .@allan1850 its still not as good as an app but I've found that in a pinch mobile.twitter.com work *almost* the same as an app.. #
• To inform friends: No matter what you may hear, unless I say it, Samtagious–the twitter account &/OR the site–aren't going anywhere. #
• There is a certain potential for drama currently but its all mine and shouldn't affect readers, friends or guests in any way. #
• There are a few individuals in my personal life who are very outraged by the fact that I won't just quit. My site is & has been successful. #
• And because of that: I don't plan to abandon the people who appreciate my work and my value as a person. Envy is a tragic poison. #
• And a very happy VDay back at you @JoLynneValerie ~xo! Also, happy VDay to @JavaMooseCoffee & @UptownSaintJohn #
• STOP YELLING AT ME! –Seriously, you're a grown-up, all caps is kind of immature. #
• .@spicypants hello darlin! Ho you been? I went underground for a while.. A few jerks trying to mess w/my world. All better now :-D #
• Yahoo launches Mobile Olympic site: http://bit.ly/aaD80j #
• .@allan1850 lol! Oh some followers are *caps lock* screaming happy vday to all the ladies, its not so romantic when you're screaming though! #
• Crackberry's weekly roundup: http://bit.ly/asJL6U Yay! #
• Epic, before Epic was cool, a classic: I am Canadian http://bit.ly/9pOPj4 #
• Alas my illness is creeping up again, I'm heading off for a nap, don't forget me while I'm away ;-) #
• http://twitpic.com/13an03 – *sigh* All b/c I tweeted this video: http://youtu.be/pXtVrDPhHBg dude is just a f**king pig. #
• That's sweet, actually. I was never *hiding* and I always rather fancied mice ;-) you DO know the truth but it frightens you both terribly. #
• C'est la vie! On with the show babies, that is what life is about, not bitterness and jealousy as some seem to assume <3 #
• Detailed tutorial for #BlackBerry security options/features: http://bit.ly/cTcIdZ #
• Getting ready to (hopefully) install Ubuntu Netbook Remix on my beloved old eeepc 701: wish me luck <3 #
• Absolute best #Linux usb install tool EVER: http://bit.ly/cBHG0Q #
• Check this video out, it's waaay cooler than the olympics — Local: Xe Chilly Dippin' in Atlantic Canada! http://bit.ly/cooULb #
• So last night I set out to switch my netbook OS from Xandros to Ubuntu. Operation success! I'll blog about it later :-) #Linux #Netbook #
• got the Ubuntu Netbook Remix last night, it is divine!! @maxlagos I #Linux #Netbook #
• .@Bandolo_Magnesi thx, it did work! Windows would be too heavy for this netbook, its a EeePC 701, 512mb RAM & only 4 Gig SSD.. #
• Soo… good morning one and all! My guts are trying to kill me (as usual) but its nose to the grind, back to work (as usual) lol! #
• RT @SexCigarsBooze *via @ilikeyourcurves — 43% of Canadians Would Choose #Bacon article by Maple Leaf Foods » http://bit.ly/b5K6el #
• I have the two most awesome children on the entire planet. That is all, thanks <3 #
• Has anyone noticed that BlackBerry email servers seem to be down again? Is it maybe regional? #
• Dear @ebertchicago I have Advanced Crohns Disease, it looks like I may need serious surgery, you sir, are my inspiration to win. Thx. #
• This story on @ebertchicago is amazing & will help me a lot in coming days http://bit.ly/atc3Fh #
• .@probiotics_news probiotics are great for maintenance & they did help a very small amount but I'm far beyond that stage now, thanks though. #
• http://twitpic.com/13rt0c – Preview: BB8900, designed especially for showcasing YOUR photo, 10 rollover popup icons–2 on each side, 6 on bo #
• To my recent Crohns followers: thx much for your concern but this is not a private account therefore I won't be discussing my CD here. #
• I'm sorry. I made a huge mistake tweeting about my disease yesterday. 19yrs going now: I don't need/want advice & I have support, thx. #
• Dear followers: If you're w/me because you appreciate my work: thank you, SO much. If you're following my disease: Thx but NO thx. Really. #
• …and now we're going to install WINE on the Ubuntu WeePC, this could get to be quite fun! #
• http://twitpic.com/144wqa – G'day folks! I'm home now but this was just before I went out earlier.. #
• http://twitpic.com/144wwv – Are you in SJNB? Been to @JavaMooseCoffee lately? Best EVER. #
• http://twitpic.com/144×4h – The ladies of @JavaMooseCoffee were awesome today too, great work! #
• http://twitpic.com/144xvy – Jamaican Butter Rum Fudge @JavaMooseCoffee: I SO can't wait to try this! *brewing a pot now :-) #
• OMG just brewed Jamaican Butter Rum Fudge by @javamoosecoffee most amazing flavour yet!! #
• For a Pay theme–this is pretty awesome: http://bit.ly/9dHXv9 #BlackBerry #
• I know, I'm SO behind in the news (still sick) but Kindle for BB now here http://bit.ly/axapbY #
• Just downloaded Bolt Browser for my BlackBerry http://bit.ly/PfqcX by @boltbrowser and it looks darn good, thanks Bolt folks! #
• You make me so happy I bought 3 bags of different flavours tonight too , you're my favourite <3 @javamoosecoffee #livelifeuptown #
• Cocoa Mochanut, Canadian Maple, Caramel Chocolate Nut Crunch : beans I bought tonight from my fave roaster @javamoosecoffee <3 #

This minimalist theme was designed with your favourite photos in mind. The top bar is especially thin so as to give more screen to your pretty images! There are ten icons that pop up when you scroll over them, they hide to let your personal style shine through. The stock background is gorgeous on its own but this theme really is perfect for showing off an awesome vacation photo, the true love of your life or your own fabulous family!
OTA:

  Minimalist 4.6 (2.9 KiB, 32 hits)

  Minimalist 5.0 (2.9 KiB, 31 hits)

Forgive me, I’ve been terribly ill of late. I’m working on my health and hoping to get back on track really soon. As some of you know, I have advanced Crohn’s Disease and I’m currently on Remicade as a treatment. It looks like either the Remicade needs serious adjustments or it needs to be discontinued and replaced with something else. What else? No ideas here, we’ve tried just about everything else so… blah. We’ll not talk about that today. Annnnyhow–this time it was/is a serious bladder infection that appears to have gone totally systemic. I’m beating this crap but its taking a lot out of me. Soon, I promise–it takes more than a bitch-ass disease to keep me the hell down.

Go visit App World today, the Wordpress for Blackberry has been updated now with better media support–photos, video. I’m making this post as a test using the app right now! So, it looks better than the past iterations, its pretty easy to navigate and use and it definitely has a lot of features for blogging on the go! If you haven’t updated — do it! If you haven’t got it — what the heck are you waiting for? Yay WordBerry 8-)