Understanding Chronic Illness

2012-02-06T04:05:00.000-05:00

I thought I would share the inspirations of my life.
They keep me going, even when the pain is knocking me down.
These animals all have healing presence. No matter how shitty the day, you spend some time, and their spirit wears off on you.
When you're sick, you're limited in more than just mobility. When you get on that horse, though, you don't feel limited at ALL. When we run, he carries me smoothly around the arena, it's almost as though he is my legs for me. He also doesn't judge. When you look at a horse, the horse doesn't just look back, he looks through you.
Horses really are the most majestic of animals.
And above all, they have such personalities. :)
Here is a photo or few... of the main focus of my life (along with my ratties, of course)

And Jazzzzy boy. Tons and Tons.

This one here, he was in English gear. I think he felt kind of embarrassed by his looks.

All of the posed 'Jazz' photos were done by a friend at the barn who owns Moments In Time Digital Photography.

This is our little barn Kitty. He's kind of become a mascot of sorts.

Mika and Mokey <3

and of course, Taz and Shep

I am back online.... And lots to say.

2012-02-03T05:39:00.001-05:00

In thisarticle Santorum states that "People have no problem paying $900 foran iPad,...but paying $900 for a drug they have a problem with - it keepsyou alive. Why? Because you've been conditioned to think health care issomething you can get without having to pay for it."
The fact that Santorum is able to make such a statement really shows the disparitybetween the 1% and the 99% to steal a saying from theOccupy....everywhere...crowd..

Not very many people are able to own an ipad, and frankly, those of us who aresick, would deserve an ipad for our suffering. The fact is that - just in casehis he's never had to actually purchase his son's prescriptions- they aremonthly...not a singular payment. Moreover, just in case he missed it, an ipadis not necessary to survival, whereas our medications are. You would thinkthere'd be a little empathy since he is the father of a sick child.

He is in a great position, all considered. He won’t have to see his son dieinside everyday, his dreams slip away and freedom limited.
It is a lonely journey, and a terrifying one. I always assumed I would make alife for myself, meet someone and not rely on them to survive. I wanted to beable to have a partnership…now I don’t know if I will ever have someone to justhold me on those bad days, confide in, and someone to confide in me, andsomeone who wouldn’t use my past and my illness to make me feel worthless. Idon’t care where we ended up, just so long as we had each other to lean on.Maybe that’s another dream I need to wake up from. A lot of people I was oncefriends with, walked away long ago, and those I still have in my life are allso very far away, and soon, one of them will be across the world. I amterrified I will end up doomed to be here, unable to live, while I watcheveryone fall in love, have a career and a family....
I digress, as usual, the past couple days have been rough.

It is said that 1in5 people have chronic pain in North America.
That is a lot of medications.
One can argue that it would decrease pressureon our penal system, and even may lead to less prescriptions being sold on thestreet, and even more than that, it could lead to a decrease of robberies andfraud for prescriptions, if the cost was lower and accessible to all that need their medications.
When I was in Peterborough, I waswarned that the highest motive for violence, robberies, and so forth, in my area, was toacquire and sell prescription medications. At that time (about three years agonow) it was a major problem.
I knew of people who were selling their prescriptions solely that they couldafford them again, next month. They’re not selling the entire script;obviously, they take a few off to the side on what would be called a “good painday”
No one denies it is wrong, but human nature is strong, and so is the urge tosurvive.

I know many taxpayers are worried that to implement this, it would mean raisingtaxes. I am sure that with the initial shock, they’d rise, but once thebenefits take place, they'd be able to lower them again (though I am sure theywill just find some excuse to keep them at a higher rate) but the benefit isundeniable.
Not to mention, a healthy employee puts less stress on the cost of Workplace insurance. Same way some companies are paying to get their employees to stop smoking, or to pay for them to lose weight. A healthy employee puts less strain on the workplace insurance, as well as less reasons to be absent so often.

Further, the benefit from more accessible medications and treatmentswould lead to less stress on the state-funded assistance programs.

There is the consideration, that once we are older, we will be aneven harsher burden on the taxpayers and on the hospitals. If things don’tchange, a majority of us will end up not being able to pay into a retirementfund, or a disability fund, or evensavings…
Moreover, if we were unable to pay for our medications, on top of being unableto pay into our Retirement funds, or saving accounts, etc…we would be susceptibleto illnesses that come with old age, especially Arthritis. It’s simple: the more we earn and are able toretain, less help from the gov’t would be needed.

however, if it were to happen, the lean on Medicare and social assistance wouldease. It would actually end up costingless in the long run to offer assistance (for those that need it, and evenuniversally) for medications that help people manage their illness. This wouldfree up paramedics, ER wait times, ER workers, as well as the costs fortreating them. It would also free up the patient to pay for the rest of thetreatments such as (obviously medications, but also) physiotherapy or rehab,and a psychologist/psychiatrist, as well as the ability to go to a pain clinicand take part in their program. Treating chronic illness is- as they love tosay- a three pronged-approach. All of those services are NECESSARY to proper management,and to have a chance at all, for improvement. All are necessary if you want usto be able to be productive.
Further, it would allow those of us who need maintenance medications the restof our lives just to be able to go through a simple night without screaming,let alone a day at work. Even if it doesn't allow us to be as productive as ahealthy person, we would be forced to work shorter hours, etc... but we wouldstill be able to work, probably still need financial aid through a disabilityprogram, but either either way, there will be less people relying SOLELYon such assistance.

Being sick is expensive: Being sick from a young age is almost impossible.

It is not easy for us: Wedon't choose to sit on our asses, we don 't choose to be on these medications,and to endure the side effects...We just want to be happy. Find someone who canlove us despite our illness, rather than can't stand us only due to ourillness... Anyway, the financial burden put on the economy is tremendous.
Just as a way to look at things:
The general medications used to treat chronic pain, (This is just a rough take on what my meds were at their LOWEST) is a course of a medication called Gabapentin, (also Lyrica) (anti-seizure meds but what it does is calm the neural pathways), as well as painkillers, anti-inflammatories,sleep/anxiety meds...and so much more. But that was what a lot of people arestarted on, at least. The total cost is approx 1,300 (that's for one of each,which if you're lucky that's all you'll need, but that is not often what it isleft at). On top of that, there is topical treatments, nerve blocks/injections,cortisone shots, and general care. If I had to pay for everything except the medications,I would be able to afford my own housing, rather than relying on my parents,and I would be able to afford food. That would be enough to at least get mestarted on an independent life, and the rest I could pay for after getting ajob. Yes, I would be limited to part time, at least until my condition isbetter managed. .
If that were possible, I would be putting funds into the economy, becontributing to the workforce and society, be proud that I am a member ofsociety rather than being ashamed I am wasting away on my parent's dime unableto drive due to black outs, and therefore unable to get into town to work. If Ilived in town, I could use transit.
I think I will end it there, and post my rant about Canada’shealth care responsibility later, because though it was sparked by this, Iended up writing my story, which will take up about 3 pages.

Thank you for listening. I will probably end up posting my rant on Canadavs America:Health Care Edition…
I ended up just writing what happened to me, and some comparisons, as wellas the comments shared with me when talking to people in North America,and the UKsuffering from Chronic Pain. Ok, that’sit for this one, at least.
Ciao.

Ps. Sorry if there's some repetition, I edited it as best I could at 5 in the morning (I started writing at 1, and this is just the copy I am ok with, not happy, but acceptable. Also, this isn't aimed at Canada OR America, rather the both of them.)

Obviously this is a personal rant. I am going off of experiences of my own, and others I know; but that is in no way speaking for all ill,
<:3}-}~~~~~

Oy Vey, the holidays!

2011-12-29T05:33:00.002-05:00

It's been a long time since I last updated. Things have been rough. You know, I used to hear people say they're cursed, and all I can think is that they were just being dramatic. Now I am beginning to reconsider.
With everything I have been through, I still hate to think that it should define me, but it's beginning to seem like maybe this was just it.
This past month has revolved around the new issue with my stomach. Apparently the files aren't transferable between offices for whatever reason, so they wanted to do another procedure/biopsy. Well, it didn't go well at all. And they never mention that if you end up vomiting you should go to emerge. This is a normal part of my day these days, so I assumed it was 'normal'.
If you've ever had an endoscopy or colonoscopy done, you know the icky stuff you have to take. Well, it ended up backfiring. I spent the two days hurled over a can. Although the first time was outside. Thank you very much....Hence why I haven't been riding in a while. The day of the big Christmas Horse Show I went head first down the ditch after jumping from the car to avoid vomiting in the car. The car was saved. I however was not. Hmph. Even when I would take the gravol I would throw it up too. That carried over to my everyday pain meds, and even water. So my pain went through the roof, and I was dehydrated. Needless to say, it was a shitty way to spend the holidays.
I ended up going in at 2 for my procedure, and woke up to the news it was all for nothing. I proceeded to humiliate myself to the doctor. He's been especially supportive about all the chronic pain stuff and after he has been so kind telling me not to give up and all that, my other doc has been telling me the very opposite. And the thought of having wasted all this time and energy with another doc who wants to wash his hands of me, and blame me along the way, you start to think maybe it is you. Maybe you are just too damaged. Maybe this is the best you'll ever have. The thought of 'that has made me question a lot of choices I made. The most recent was regretting the failed attempt I made a couple years ago to end things. You are surprised how much your body can take.
I know I was just especially upset thinking that way, but after the last year, it's hard to really think anything else. I got off of a whole load of medications other docs had put me on, that had me too sedated to know what the hell day it was, let alone anything of any intellectual was a hopeless pursuit.
All so I can just be aware for my doctor to suddenly decide now that he won't even look into other options. Let alone start at the base such as actually being properly diagnosed.
He says I am the one putting up road blocks because I won't just sit down and..."accept that this is it. Stop trying to find a way around the rock. Stop looking ahead (which includes even simply setting goals financially etc...). " And so forth. He loves to refer to his damn rock in the road analogy. Hmph.
Anyway.... I go back to that...doctor....in January. I am finding tho, that a doctor who tends to specialize in terminal care, should not be in charge of care of someone who isn't considered terminal because chronic pain drags the suffering out. It tends to put our care on the back burner.
This is getting insane.
Anyway, yes, I ended up breaking down as I was coming out of the anesthetic.
My internalist so kindly wrote a prescription for an anti-depressant...
I was a little embarassed about that.
I think a lot of that was a) Exhaustion and, b) the PTSD. The past has been rather rough involving doctors and operations. Waking up in that damn room felt just like I was back 11 years ago. Mid-scream due to the method they used administering the anesthetic during the surgery. The pain was intense and the night terrors I have coming out of sedation on normal days, are bad enough, let alone the pain and the memory of the past.
I hope he understands. But it is hard to live that down. Have I really screwed up the only positive experience with a doctor I have had.
And just to top it off, this is what I ended up saying to him: Why can't you be my pain doctor, as well. You're the only one who seems to think there's any hope for an end.

Ya....Great.
Anyway, my stomach is going yet again, so off to get a gingerale or camomile tea...though that's a story for another day: Christmas eve losing your water for two days. And now we're stuck using bottled water until we get it tested. The piping we had actually had rotted right thru. So, the water turned brown, and the pump broke trying to push all the water through a pipe that had the water gushing out of a whole not reaching the house!
I think it would have been better if we lost hydro instead! (And yes, I am speaking from experience. A snow storm knocked our power out for a loooong time. Just under 48 hours.)
Anyway, that was my holiday.
My brother did join us with his other, for a couple days, and it was a nice visit. It wasn't always so smooth, when he came up so there was a lot of anxiety over the whole thing. It was nice having the family together. Though it is rather hard to hear how even he's moving on. I thought I would have been the one to have at least a diploma..now I am the one living in my parents house completely unable to do anything for myself. This is horrible for someone who swore they'd be on their own by 18. Moving on. I thrived off of the pressure of school and now I can hardly stand reading for longer than a half hour without throwing up or developing a migraine. I lived off of books, living thru their adventures, reading all that I was supposed to experience. And here I am...What a friggin pathetic waste of four years. I am behind where I was five years ago.

Ok. I am really off to try and get some rest before riding. Ciao.

2011-11-19T03:41:00.001-05:00

So, obviously the last post was regarding one of the worst appts I have had in a long, long time. Today, however, went a lot better than I was expecting.
:)
So about a month ago, I had another negative appt with my psychologist/ pain specialist-ish and that appt (esp when factored into the past as well) so I contacted the office of a psychologist (I believe) who specializes in pain management.

-However, she's simply the "therapy/coping mechanisms" side of what they call the "three pronged approach " to treating/managing pain. 1-Medications 2-therapy/emotional support 3-rehab/research part of it...
(Sorry, meds are kicking in, so I am a little redundant/inarticulate)

So in Sept I investigated some psychologists in the Barrie area, and the woman with whom I had my apt, today, was WONDERFUL!
We only had an hour, but we covered a lot. One thing I like about this situation is the fact she doesn't have my prior records -[or in this case, a summart of my records and treatments....beginning after the GP cut me open, too...gee that's not obvious he's aware of what he had done].
The worst part was that he had his nurse take my mom to the back room to 'talk' and all the while my mom keeps insisting he look at the ultrasound before doing anything because to find the object they did it on an angle, so whomever was to operate would compensate for it.

...ok, getting distracted...back on to the topic: seeing a new psychologist, and it's a fresh start for her to get to know ME through our sessions and not through others' interpretations.

So the doctor I met today was a great psychologist. She reminds me of the one I had in Peterborough who helped a lot.

When I told her[new psych) why/what I was hoping to get out of this, and after this whole psychiatrist dude telling me to give up/ give in/ or to accept the pain and accept that this is going to forever, and then not even be willing to look into a different medication, or therapy, anything, and yet, that's what we had discussed when I had done my withdrawal from a lot of medications to get to the bare min, and part-2 of my treatment was to try and get me to a point where I can be self sufficient or at least help out with costs, not to mention I don't have much experience on my resume beyond volunteering and committees I was on. I have no credit...I am nothing, and the longer it stays that way, the harder it will be to even get the most basic of a job

-side explanation: his is another reason I told her I needed her to help me work through, and she jumped right on it!! I talked about wanting to get back into classes and school around here (I don't know if I can return to Peterborough, as much as I miss it.)

So, when I was talking about it[schooling], she encouraged me, and at the end my dad asked casually,"do you think you can help her?" And she responded so positively and said she'd definitely be able to get me set up in school if I wanted to go back, and she can help me learn about what credits are transferable and everything. I am trying so hard not to get my hopes up, but she really was a very kind and encouraging doctor. I am happy I found someone who is willing to believe in me, rather than telling me to just sit there and accept it.
Not to mention, she bought up the idea of injections/? Something No one's been willing to truly investigate this treatment...but yea, I am definitely eager to return to school, get a job...I can't live off my parents forever

-Which is another thing Psychiatrist said when I said that to him...: well, you have a lot of time to worry about that, but you're not there yet. Live day by day. You can't live in the future...Once I do this, I am closer to "accepting" the pain...oy. And yet first, he said he couldn't help me until I go into the' real world' (ie. a job, school) and yet I had an office job, that was still fresh on my mind, (it disbanded so I was let off) and since then,yea, I haven't held down a job, but that's because I was drugged out of my mind, and depressed, and well, everything was against it.
We were facing losing the horse, so I took a job at the barn, two days are now down to one. And after work, I crash. I have been crashing at work too. This is ridiculous. Even when I do sleep I am exhausted, and when I don't -which is the majority-I am exhausted as well, and yet, at night I am back to no sleeping. But hopefully that's temporary.

Well, thought I would share the good news for once, (again, trying not to be too excited by she was just so awesome naming off all of this information I have been trying to figure out). I am really hoping this works out. :)
Off to sketch for a friend's xmas cards. (she's getting me to draw her two horses with merry xmas on the card then she'll copy it and give them out. Ahhh! Another customer! :)
Off to bed I go.
Ciao.

2011-11-14T21:21:00.001-05:00

What next...really....I can't stand this anymore!!!
Ps. my phone broke today, so I have no cell phone until the earliest: Sat/Sun. Fuck. EVERYTHING just has to happen at once, right? And in threes. Or tens....Hmph. Gunna crawl back to bed and never get out
Good bye.

scared...Is this really it?

2011-11-13T02:27:00.001-05:00

A little while ago, I started riding (horseback) again. It had been years, but I always felt better when I ride, and remembered that, and tried again. There's a lot of things that I can't do but I try, and Jazz is the best friend a girl could ask for. He doesn't judge me or my limitations, infact, he challenges me and makes me really focus. I soon found out that someone there had chronic pain issues of her own. She was sympathetic to our situation (we almost lost the horse because of all the medical bills) and offered me the chance to work off his board. I started Oct 3 and it's only 2x/wk, and I am dying. The pain is so excruciating I just want to die. But I already had to give up my education and independence due to my health and at the time, improper care leading to more issues.. I have already been turned down due to my illness, and now I am living in the middle of nowhere with no transportation cause I can't afford anything. I worked pt in an office for a while, and couldn't even handle three days/wk So my options are to work for someone who understands the limits I have and how it will take me longer to complete than "normal" people, but low pay and physical labor, or a job that has me in a chair for 8 hours, a more rigid schedule, and out of luck for all the time off I need for apts, but better pay. There's one dream I have, and that's to go to New York and boston. I have been to Boston, but not NYC. I can't explain it, but it makes me cry to think I won't get to go. I have tonnes of books and maps and general merchandise, you'd think my place was in NYC. On top of that, I memorized the whole damn city! Even staring out the cams on the tourist website. The wost part, I can't even get proper help anymore because my pain doc passed me over to a psychiatrist who is less than capable, let alone someone who supports you...more like tears you down. It's pathetic. Then he goes on to say what else can he do? He doesn't know what's out there, doesn't know of anything at all, and doesn't think I should focus on that anyway. I have to accept that this is it. And I won't be able to work, never have a family (that one is courtesy of my physician of old), always be dependent, and never be short of this pain, and it'll only get worse. But looking for help means I haven't accepted my place and it means I haven't come to terms with this. This analogy was then used: Pretend you're on a walkway and there's this large rock in the way...you can't move it, get around it, and it's far too dense to chis;e it away. You have to accept it, by laying down beside it, and accepting this is as far as you go.... Like, WOW?!?!?!?!?! When I was first passed over to him, I spoke to him about the fact that there are some medication combinations that worked when I was younger, only I was too young and the side effects were too much, but now that I am older, I would like to look into therapies, or anything that could help, but the first priority is getting out of the medicated coma. So, it takes a year, and we're there. I went from handfuls throughout the day, to a few here and there. But now that I am there, he drops me. Ugh...whyyyyyyyy??!!!! Off for more searching. I am just getting so tired. I don't know if it's worth it anymore. My parents are killing themselves to help me. I have always stayed strong for them, but I don't know how much more I have in me.
I live in the middle of nowhere, not a lot of friends...ok, I have 3....none of which reside close by. the only fam I have is my parents, and my distant brother, and a grandma. I don't know what I can do to not let them down. I want to finish my degree, but I am terrified to go back to the university I left for some other traumatic reasons. Everywhere I look I see flashes of what happened. But I miss it, too. Now, I can't get out of bed. I can't lose jazz, though, and I need money to live on. I don't even get any help through disability. What can I do?! Why is this it...it can't be all there is. how do others deal with not being able to work...especially if you've been sick since you were 9 and therefore have NO assets. No money. I barely have a resume. Incomplete education, and I am sick. I have NO credit...I literally have nothing. If my parents disappeared, I would be out on the street. And recently a scare had us worrying about these things. What Now?!?!:(
<:3}-}~~~~~

2011-11-05T02:08:00.000-04:00

You know, I came to terms with the fact that I will likely be alone/ have no family (or at the very least if I can find someone who can tolerate all my illness issues, the ability to have kids has been taken from my thanks to the medications and over-medicated way I was treated when I was young (and still developing), I will struggle to survive, and that was when I thought I had a doctor willing to try and help me to make it. Now...now things are different. Today was a wake-up call.
I get in there and he asks how I am doing. So for once, I was honest. I told him straight up that things have been getting worse.
The first battle was to clean my body out of all the drugs that Josephson had put me on. Get down to the bare min and at that point, decide whether maybe one of the ones I was on made a good combo, or look into something new, or up a level just a bit, until we do figure things out, but he just sat there. He won't even look at increasing a single med, even my breakthrough stuff that no longer has the effect it once did. So basically I wanted to ask him for the ability to take 6 instead of 4/day incase I am having a really bad time like at work.
He stood there and said that there was nothing he could do for me until I accepted things/ stop fighting. So I did. I accepted thing. I accepted that this is my life. That I don't even have the chance to live a life before I lose it. I accept that my ex-doc has fucked me over. And that the medical system is run by human beings and their opinions, more than tangible proof. When a hard case comes up, most would run than take it because we don't have a competitive system here in canada.
I didn't actually come here to talk about politics.
I guess I just need to vent. I am used to doctors being assholes and actively not wanting to get involved, but not one who actually believes there is nothing he can do when he is simply unwilling.
Apologies in advance if this is a bit scattered. I am tired and defeated.
Basically, when I broke free of *he-who-should-never-have-been-licensed* (DrJ for short), I thought it was the beginning of this journey all over again. I was sent to MtSinai, where I had heard amazing things. Doctors who would go the extra mile for their patients. It was the first time I had ever gone into a treatment with hope. Of course, I clarified that I didn't have any expectations that he could heal me, or anything, just that this was the beginning of proper treatment. The pain doc wanted me to see a psychiatrist friend of his to tackle the mental and emotional aspects of chronic pain, as well as coping mechanisms, etc., but he assured me he would not ever just abandon me, or let me 'fall through the cracks, again'.
Well, yet again, a doctor was full of shit.
After a short while of being under the psychiatrist's (drK) care, I find out via him, that the doc is thinking of retiring/has already retired. I didn't get so much as an email. I found out because I couldn't seem to get an apt all of the sudden.
So, now this DrK is my pain doc. The plan was to get my system as clear as possible from all the extra meds I was on thanks to drJ.
The deal was, I would go through all that withdrawal, start over, and he would be willing to look into either meds I had been on that posed potential to help, or to talk about new stuff, or upping a dose of something or ANYTHING.
Today was that day I asked him about doing so.
He said that he doesn't think meds will do anything (um, despite all evidence, apparently) and says there's nothing he can do. He's helpless. At that point I just looked at him and said, no. You can choose to discuss these things, or point me to specialists who will, or spend an hour apt jointly looking into things like meds or what ever, but you are not helpless.
He believes that all that's left for me to do (that apparently I am unwilling to do) is to give up. Stop fighting. Stop working, everything.
I said that this is not happening. I have had to fight with all my strength to NOT give up, if I give up where does that leave me?
I told him, I have tried accepting things. Infact, I do accept things. I accept that the pain is with me to stay, and that life will never be easy. I have even accepted that I am too much of a burden for most to be friends with me...my own family has made that clear (aunts/uncles/ not parents). I have accepted that this has been a MAJOR factor in the relationships I have had fall apart (includ friendships). It's also led me to be too blind, and unable to notice or return a gesture for someone I cared about dearly, and who had made a gesture unmatched by any... for that I am still sorry...And that I will not live a life even slightly close to the most basic wishes I once had.
It's frustrating. If he was saying this to me after the ten years of this illness, only let's say I was 30 when I got sick, then I would be able to say sure. I will stop fighting this and just take EI, and disability leave, and get some help with tax breaks, etc... Not to mention I would have credit, and be able to own a car or rent, w/e. It's not easy to be sick when you're older, but not even including the fact you'd have already lived a great deal of life, and accomplished things, possibly even have a family, or at least have a chance! All of that would make it possible to live a modest lifestyle probably still be on welfare and food banks, etc... but at least I would have SOMETHING to my name, and qualify for help.
He wants me to just sit down and see what happens. Not think about the future.
I said he couldn't be serious, if I live with my head in the sand and don't prepare, than at any moment, I could be out out on my ass.
how is this man a psychiatrist esp dealing with people who already are fragile and close to giving up.
I made it clear why I am fighting and what it would mean if this is it, and he just shrugged it off. I was honest with him about something I have never been honest about with anyone-even myself- and he talks right past it.

When I was in Uni, and my doc had screwed me over so I was three days in withdrawal, and on top of that I kept trying to cater to the person at that time I was dating (the asshole friend of my bro) for whom NOTHING was good enough (I oganized a surprise New-year's eve/ birthday get together with his friends staying at my apt (which if you know me, you know I a)don't trust strangers, and don't trust men, and esp strange men...) I didn't get so much as a thank you. All of that had wiped me out, but noooo, instead of him helping me clean up or even offer to help take care of dinner, I had to slave over him. We get to bed an hour late and he's yelling at me about the fact he won't get his full 9hours of sleep. (Bitching to someone who hasn't slept more than 5hours in one night, not even split up, in over ten years). That night, the pain, and then my emotions were too much, I just wanted it all to stop. So I od'd on ty1s as that was the only painkiller I could get until they refilled my script. I didn't mean to od. I was just taking them more, one more, one more, one more, because I was so desperate for the pain to stop, and the way I had been treated it led me to believe it was a rational decision.
Anyway, that's what I was honest with him about today, and about the fact that lately I have regretted surviving. I am way too chicken shit to ever try something like that again after what happened (it was SOOOO opposite to what TV and movies have you believe--not that I thought it would be like it is on the tube, either, but I def didn't see it being THAT bad. I wondered why I was so drawn to dangerous things (like wandering at 3am in the rough side of town on my own) etc... and honestly, the reason is, I was hoping with all this random acts of violence, maybe someone would end it for me. I know how that sounds, believe me, but that's hoe messed up I am right now. I feel so utterly ashamed for thinking any of these thoughts, but right now, I don't know if I can keep doing this on my own.

So, that was the apt. At the end I asked him if he'd be willing to get me a new pain doc, and I am not clear on if he is or not. He wants to send me to a neurologist but if things aren't going to change including if he isn't willing to give me any leeway with my breakthrough pain meds, then I won't be able to keep working, so what's the point?

I was the most anxious person I knew who wanted to move out and get my degree and live life...the moment I was done High school I jumped out to Uni ASAP. I saw that each year things were getting worse, but I hoped at least I could get my degree before my illness slowed me down, and the worst part, if Dr J hadn't actively neglected my health, I could have! He ruined two years, and all I had left was two years. ...

Anyway, as I was saying, I am hopefully going to get a new pain doc and start this all over again. I just might have to give up everything else I have to do so.

g'night.

2011-11-03T12:17:00.000-04:00

I have been doing some reading up and some organizing on what and how I want to talk about things, but in t he meantime, there is new legislation in Ontario that actually, I experienced yesterday. Check out this news report. I am going to do more research into the legislation, but for now, here's the report introducing it...

ahoy hoy

2011-10-22T23:44:00.002-04:00

It has been forever since updating. That's mostly due to a series of shitty events in the past year. I am not sure how much I have left in me to fight all of this, but I figured there was something I have wanted to do now for a while, and what better way than do it through blogging. I want to go over the events of this epic health tale and I guess, just, really look into things.
I guess for now I will just update the most recent issues.
One of the most common issues I have had with my doctors is this general assumption that the reason I am at home is ignored, they simply look at it as "well, we can't do anything till you're out in the real world" which is what I had to leave because when I was in it, they refused to help as well. Now I am a mere lazy patient not motivated enough to get out there. I finally decided that I would try to work and in return maybe that will leave my doc more inclined to help. Unfortunately the pain is skyrocketing more than I have it in me to tolerate. I don't know what to do... Do I keep fighting? What's the bloody point. It's not like I am 30 and have an established base line of living, and a pension and had a life... I have nothing to my name. Not a single cent. What happens when my parents can't support me anynore (not that I ever want it to get to that point...
Anyway, Other than that, I guess I can add yet another failed relationship to my list of accomplishments. I sure know how to pick them. God. Oh well.
Just as I seem to be unhirable because I am sick, I apparently am undatable, as well. As soon as they see what it's really like, they run for the hills, after treating me like shit.
So, for now it looks like I am attempting to work two days a week in a rather demanding physical job. I get to take care of the two front barns at my place I ride.
Well, I think this wraps up the intro to the history of my struggle with chronic pain. It may help, it may not, but I am doing this for me. If I can show at least one person they're not alone (something that was severely lacking in my story) then it is all worth it.

Hope

2011-08-24T11:38:00.003-04:00

I just returned from an apointment with a doctor for my stomach ailments. And yet, he in one apointment has given me more hope about my illness including the chronic pain, than my pain specialist/ PSYCHIATRIST! My theory: He based his opinion on our meeting. Not He-Who-Should-Not-Be-Licensed's notes, and the pain clinics "opinion" (which was almost entirely incorrect with my medical hist) and he just talked to me about the history and the curremt. I could be off, but so far him and my psychologist in Peterborough (who also never had the notes from HWSNBL's office until later) and this doctor have actually approached my treatment with any compassion and willingness to help.
He told me not to give up, and that there is hope. That searching for help is a good thing (all opposite to my pain doc). I just wanted to hug the man. This is the most hopeful I have felt in decades.
People, keep your compassion and never get cynical enough that you harm the ones you care about. Even if it's the last thing you feel will happen, keep hope that there is light at the end of this very very long tunnel. You could make someone's day with just a little kindness.
Anyway, finally something is going to get done. I will go for a catscan and a few tests, and hopefully that will yield some results and answers.
It does look like I have a diagnosis of Crohns disease. Damn.
well, I am going to lay down, and elevate my leg. Boo. But I shall return.
-Sam

denial

2011-08-14T04:46:00.002-04:00

So...life's been a little rough...ordinarily that would mean things are tolerable; just stressful. I have had the usual pains and stress related to the pain... and even before shit hit the fan, I have been agonizing over the schedule I have been facing. I did the whole "write it and forget it" where you write it and it helps clear things up and make you stressed less. My little list has me even more freaked out. Dealing with that was frustrating but now...I just feel like my life is empty.
When it comes to lifetime accomplishments I could always sorta say "ok, whether I take time now, or had taken time before university, the outcome would be the same: I'd be stuck at the same impasse." In talking to my brother, it hit me: what are you doing?! You're time is running out and you don't even have more than a hundred bucks to your name and worse yet, you have no diploma and it's not even one you can transfer over so it's Trent or notta. Well, we don't have the money for Trent. I have been thinking of doing a 3yr college degree ~ and while it seems like a great idea, I'm terrified I won't be able to handle it...again...with the pain, my memory issues (my short term memory is shot) a psychiatrist who prefers to do things in a manner harmful to his patient...not to mention all the other stuff entailed in being A sick person. I really do hope I can just get it done.
There wasn't much of a timeline-at first. Now it's all based on my beloved horse.
When I first met him, I got to take him for a ride-test. See how he handled. Yes... he was young, but we learned together,and have gone so far. All for this.
To me, he's not just a horse. In fact, he's not even just a family member...he's my physical therapy...my natural pain killer, my freedom, my legs (I can run again!) He's so much to me it kills me to. See him go. We had some amazing times. I just hope more than anything the new people love and treat him as well as we tried and they are kind enough to send updates. If not, I'll lose it. Even now. I can't stop blubbering. You know, it's a selfish emotion on the surface to say it would almost be easier if he passed away, but it's true. How can we know he's ok? The feeling of letting him down/not being able to care for him...it's a sick feeling.
Part of the reason it's frustrating, as well is because of the people. All of these 'friends' I have made are friends on the condition you own or part board a horse. The irony: my mother has been endlessly pushing me to get out there and connect and now this one way it's taken a year to be let it I have to walk out on.
This is only one recent development that has had us scared. The other is regarding my father. WE're not entirely sure what is happening, but his recent test results showed a bit of healing and he says he's feeling a bit better. The only problem is if he pushes himself too hard it could develop into something worse. We're crossing our fingers it stays under control. (let's just say it ended up being the least evil of three really shitty evils).):
Now we wait.....
Tackle chores........go out.......pretty much live in denial
I am so relieved my dad will be ok<3
Ok. I think that gets ya all caught up.
In an interesting and kind of cheery note to end with:
I went out walking tonight with my brother and out of the utter silence: wolves!!
W00t.
Ok. That might just be enough rambling. (:

Back from my rather long hiatus.

2011-07-05T04:51:00.003-04:00

It has been quite some time since I last blogged. I decided I should get back to it, and update the world of Chronic Pain.
There have been some developments in the medical industry as well as in my own personal handling of the illness.
First- the medications.
When I was under the “care” of He-Who-Should-Not-Be-Licensed , his idea of care was “of one medication does not succeed, drug drug and drug some more.
Now, since being treated by my new dr (both the new family practitioner and a psychiatrist in Toronto whose specialty is pain), I finally feel there might be even the slightest chance that even if I don’t get better, my quality of life may improve just even a little. At least I don’t have to worry about being neglected. With Dr-he-who-should-not-be-licensed, I was getting more and more sick with things that should have been discussed within one glance at the blood results, and such. Not only did he “miss it” but he intentionally ignored it. At one point he stated that there was nothing “spectacular” in my results and yet, these were the results that showed I was on my way to becoming extremely anaemic, he could have prevented a dangerous and life threatening few months.
Anyway, the good news is that the medications are finally being addressed. I have gotten off of numerous amounts of medications, --namely the coma-inducing ones—and while I still have my bad days (unfortunately the trade-off was consciousness and pain, or…coma and less pain, but unable to cope….) those bad days are far easier to cope with now that I can think straight.
Second- everything else.
D has been wonderful in putting up with me. I wish that there was something I could do to just push away the bad days, but especially since going off of my meds, there are all these issues with the pain really getting under my skin. I wanted nothing else than to have a great pre-fourth/Canada day celebration with him, but I could hardly stand him even just rubbing my back, or putting his hand on my shoulder. I wanted to lose it everytime and yet while part of me felt like that, the other half of me was trying so so hard not to let him see my pain and even general grumpiness.
I have way too much baggage. I wish I could shut my brain off and my fear off.
Oh well, as long as he is ok with putting up with a little neuroses, we’ll be juuuust fine.
On to some actual relevant topics: there is a possible paradigm shift in medical community over how to define Chronic Pain. Right now, it’s considered a syndrome (or group of). However, recently there has been some movement on the board towards considering it a brain condition (link). This could go a long way to allowing the chronically ill to be eligible for disability help.
This originated through the use of Neuro-imaging. This could also lead to insurance help, and even prescription assistance.
----
ok, side rant…
In Canada, they claim that we're not a 2-tier system, and yet, even in my own case, there have been a few time where I was put in the position of "this is available, but it's ($)cost--without that money, you are - in the very best- put on a 2-3 yea wait list. If you pay, you can get in within months.
Gr, it's frustrating to hear that if you are a transsexual (and in all my ranting, I in no way am saying they shouldn’t get the help, or anything like that) you are given assistance for free sex change operation, and in most cases, coverage for counseling, as well. Yet, people in our condition have to fight just as had to be taken seriously, and we encounter the dismissals and mistreatment… Worst of all, we cannot survive without the medications (some) that we are on- namely stuff used as maintenance meds. We are stuck on our asses gaining weight because they have us so sedated you can't move (some days it's so bad moving to the other room is too much. Can you imagine that? Not being physically able to move two doors down in your hallway.) and thus putting more of a stain not only on out illness but our health care and risks to develop more illnesses such as diabetes. Something so simple as allowing Gov’t coverage for physio, counseling, and assistance in paying for the medications can take away the suffocating feeling of the weight of all these costs.
What’s worse is for people in my case, and there are many, where you were forced into this position at a young age. We need safe guards in place, too. When you’re older, and have had a life, a job, a family, and you’ve moved through life “normal” for the majority of their lives, they are better able to move forward. Not saying it’s easier in the least, because from what I have learned in talking to many who are in that situation, they face the struggle of keeping their family together, have their children being insanely difficult and undermining them, and not to mention employment. Anyway, the difficulty is in social development, shitty resumes because we can’t work…lost and wasted tuition fees…Not to mention trying to develop romantic connections in our conditions are not easy.
----
End of rant
----
Going back to the previous original subject of this blog: I am doing some more research- thus far only one article- but it brings hope indeed that someday, if they haven’t come up with much more than what we have now, that they may be able to modify some of their treatments to better treat and manage our conditions. I look forward to more developments.

Back in the chair...

2011-02-24T22:34:00.003-05:00

Thought I would actually update something more than a hello. I have spent just under the last year out of classes, out of a job... Out of civilization it seems. I did so so I could commit fully to finding answers regarding my pain. Apparently I have waited too long. More accurately I should have left my precious doctor as soon as all of this happened. 12yrs and I am only now even getting diagnosed- properly.
So... If I am to look at this as a fresh start my reaction is. Really? The last twelve yrs has counted for nothing?
well ok...basically, I do have to treat it as though I haven't had treatment to this point. So, this is why despite the years of shuffling, I am back and fully devoted to these tests etc.
Now, there comes a chance to possibly deal with my PTSD and basically heal the side effects. It will either cost 15000 to get in within six months- or wait... For two years.
I) more evidence Canada is already a two- tier system;
Il) how can you commit to an 8 -9 month program in patient when you can't get in for two years!?

Now, my MRI and my Sleep Study results back. I had a sleep study done in the past, but my doctor at the time was the one who played role number one in ruining my life. He is referred to as many things, but namely he will be referred to as he-who-should-not-be-licensed.
Ok, so yes, he looked at my results and scoffs and says that there's "nothing spectacular". Not too long after that did I collapse and when I spoke to the Trent doctor I showed the recent.blood test after she diagnosed me with severe anemia. She looked it over and said that it was mishandled and that how bad I was hit was preventable.
Ok-got off track-
Basically, less effort was put into telling me about the study results. I found out after obtaining a selective and trimmed 'summary file' as my patient file- but I did have a record from 2001-post -screw up-- that includes the sleep study. What did happen, nothing. Notta. So this time around, they followed up with me, they treated me well. It was handled well. So they compared the two which led to two diagnosis. The first was insomnia, and the newest one: modern sleep apnea.
My MRI shows nerve damage and some odd spec. A piece of metal. Hmm. w
My foot's been real bad with pain despite everything.
I fear though, if my new relationship will last through the hard ships from pain and money and pills. It took a lot from my parents, to help me through this. Why shouldn't some one who's new at handling somone like ... Me.

I go to spek to surgeons, anestesiologists, the whole nine yards.
A lot is being dragged out as well. I know it sounds cliche, but emotions don't just leave as you exit the door.
I am starting to have trouble thinking straight, so... To be continued!!!!

And to be continued well. Not in babbles;)

2011-02-23T02:07:00.002-05:00

I know that it has been a very long time since I posed. Between my health and trying to get out the door, things have been a little...rough.
I don't really have too much to say just at this time, but I do need to write a lot for this blog about what's been happening. There have been some movement in my case, and a few new diagnoses. Trying to have a new relationship and with someone who doesn't understand chronic pain, but is having trouble handling it again....I am definitely losing my mind and can benefit from throwing it on paper, or in this case, on screen. I hope to God that someone learns something from what I say, but the main message: DOCTORS ARE NOT ABOVE HAVING EGOS, AND WILLING TO SACRIFICE YOUR WELL BEING TO PET THEIR EGOs. YOU HAVE THE RIGHT TO GET A SECOND OPINION...NEVER LET YOUR DOCTOR GET AWAY WITH LYING TO YOU/HARMING YOU (WHEN HE IS INFACT LYING ABOUT THAT--TO AVOID THAT--ASK QUESTION!!!LOOK THROUGH YOUE RESULTS WITH YOUR DOC. )

Learning to get up faster each time

2010-10-03T17:04:00.002-04:00

The loss of a friend is a hard thing to go through on an average occasion. When it happens that two people no longer share interests with one another, or that there are differences, well, you can justify it. Not too long ago, myself and the barefoot Anarchist went through this with who we thought was a good friend of ours, but looking back, there're points where there are points of reconciliation within.

Lately, unfortunately, I have lost another friend. This one is a lot like when I lost another to having a girl.

I had this best best friend. We were friends for years, tried dating, then went back to being friends. We made these promises to one another, that no matter what, we'd never walk out on one another and never leave one another on their own. Apparently his girlfriend was threatened by our friendship, and even wrote me a few times about it, but unfortunately everytime we did talk, they would fight. So, he pushed me away for her.

After what happened to me, namely in first year, as well as the people that have walked out of my life, it took me a long time to trust again. I met this guy at my brother's place, and we hit it off. We dated for two and a half years, only one of those was actually dating with love in it, looking back, he had given up by the second year. But the point is, we were happy with one another for the most part. Once we started to fall apart, it was for good reason. Again, with my history, and him being aware, he used to respect the fact violence was a no no, but he took to punching inanimate objects, including a wall once where he broke a few bones. And my elevator, scaring me to the point I couldn't get up from a shivering ball on the floor of the elevator riding it up and down until he left, and another time, backing me up from my apartment.

With the pain and the stress and the PTSD and the violent past I have had and confided in him about, he totally abused that. As well as only was around when it was convenient for him. When I was in the hospital, he left said he'd be back to help keep me company until I was a little better, but never came back. I was in there for an od. I needed someone.

So, our issue now, is apparently he has a g/f. And suddenly that means that we can't really be friends any more. Following, he was extremely rude. I told him I couldn't deal with it that morning because I had an appointment of a lifetime that will determine my care with the hospital (and he knows how hard these pain clinic appt are), but he continues going on and on about emotionally traumatic issues that he knows will hurt. Until out of nowhere "I have to go to work, so I won't be txt'ing anymore..."

Pompus ass.

Anyway, I finally ended up calling him, and as to be expected from a coward, he doesn't pick up, but I left a very calm message, just asking him to call. 10 minute phone call to clear things up. I fell asleep crying, and apparently missed a call....or so I thought. Well, I thought he was finally willing to make progress, apparently not. He txt's me in response to: "thank you for calling. I am sorry I missed it, but I am so glad to see you care enough to try and work things out". He responds: "Oh, no, that was an accident." Aka...Fuck you.

So I told him I am not doing this over text anymore and if he wants to work things out, and cares enough, he will call. But I won't wait forever.

No response to that.

Just heartbreak.

Another person walks out of my life without so much as a care. Am I that forgettable? Sometimes I really wish I had succeeded in January. Would have saved me all of this bullshit. I have feelings, and I do hurt when people pull stuff like this. But that doesn't seem to matter.

All the times I dropped my life, and went to his aid despite it being a bad time. Leaving class to help him. Putting up with extreme pain, skipping a night with the girls, demeaning myself...ughh...All I was was some item to assist him through his single life. I hate myself for letting him use me.

Well, fine, Fuck him.

If you can't tell, things haven't been going well at all all around, including disease wise, which doesn't help.

2010-08-20T01:38:00.003-04:00

So, I have been trying to adjust to this new medication that my pain clinic physician has put me on. This, unfortunately, is rather difficult as the dosage is raised every three days until an appropriate level is reached where there is some relief.

My last post was entitled "another disappointment": I think I may have jumped to conclusions on that. While I am not exactly thrilled with the way first impressions were handled, he has since proven himself to be a doctor that takes each case seriously. There will obviously be times I can't reach him, and there will be times that I screw up because I over estimate the amount of pills I have and he can't get the script in time.

It'll be a learning curve. The main point here, is that after 11 years of desperation, abuse, and just a couple others that couldn't handle the case, bur wouldn't say anything....I (cautiously) believe I have found "the one"....who can treat me.

So, more to come when I can actually stay alert for more than five seconds at a time.....ugh. Ciao!

Another dissappointment.

2010-08-05T02:21:00.004-04:00

So, I have about a half hour charge, and felt I would write about how my trip to the pain clinic went, since I was so looking forward to this, and so optimistic about it at first.
I went to Mount Sinai in the hopes they would be able to offer some help that I have yet been able to receive.

A little history:

I went to Sick kids hospital when I was younger, and they couldn't do much- this is when the pharmacological solutions were honed in on. Amnatryptoline, nortriptalyne, Gabapentin, topomax, ...all of this began. And for the short term relievers, I was given Ty3.

While it didn't take away the pain, it was helping to manage it. I went from screaming in agony, being unable to walk without assistance from crutches, and even the swelling went down, to a constant pain at a level that let me still attend school...but here's the thing, if one pill didn't work, rather than just putting more and more on top, they would wean me off of it, and place a new one in its place: a concept He Who Should Not Have Been Licensed never really grasped.
Moving on, the trip down to Toronto on a constant basis, and getting very little help after a while, we ended up stopping, especially after a few traumatic events that happened. When you're a kid with Chronic pain, ugh. If it was pain that was something they were used to addressing, it wouldn't be such an issue; the problem is, it's pain that was caused by such an obscure reason, and in all rights, shouldn't exist. No easy explanation- no easy fix.

I tried having it managed through my family doctor - the one that did it to me to begin with- and that didn't work out so swell. I went to Toronto Western, and they focused on the psychological front. "it's all in your head." I know that any pain sufferer has heard this phrase at least once. Well, there's a limit to how many times you can handle hearing that. Anyway, I was hoping that Toronto Western could do something for me, and I truly believe that if they were a little more careful, they could have. They had me in for three days straight. well, they first day, they were trying a test, to determine what pain meds could assist in the type of pain.
Well, the test they did was determined on the reaction time.
The schedule for my check in was that I was to be started on the meds at 2pm....they didn't start me on it until 4. I was reacting until 6. And granted, I was a little hysterical, It basically paralysed me, and to someone who has been continually abused, not being able to move....doesn't make them feel particularly comfortable. I explained that in the follow up..anyway, they thought that I had been reacting since 2pm. until 6....not 4-6. So in the report, it was written as though I had an irrational reaction to the medication, and it can't be the pain in my foot, it has to be more in the head....etc...
That's the report this doctor went on.
After that, I left.

I have been seeing a psychologist for over 1.5 years who deals specifically with patients who deal with chronic pain, and she is not only the first psychologist I have been able to work with, but she is the first person in the medical field that I have been able to trust, and open up to and who believes in me, and who fought for me. Unfortunately we both moved, so I cannot see her anymore, and she has helped me work through almost all of my demons that had been causing me distress. It was to the point that she was starting to lessen the frequency of our visits.

This doc has decided to ignore that, and say that that is what is causing my pain. UGH!

Alright, up to date now....

I was really hoping that after all this time, and all these disappointments, and all of these abandonments, etc... I would be able to start with a clean slate and get someone to help me manage the medications, decide which are necessary/ which aren't, and which just need to be replaced...

Anyway, he honed in on the fact that well, since I had to leave school, and am having work troubles, I must be depressed, and that must be the reason I am missing work and school...
He missed a vital step in there: It's sort of the chicken Vs the Egg thing (but in this case, I can tell them with out a doubt, what came first) did the depression happen, causing pain, or pain causing the depression? Well, hence the concept of the INVISIBLE illness, there's not obvious place that has a giant "this is where the injury is, and this is the injury" on my leg, other than the scar, and he thinks that it all should be healed and done with my now. What he doesn't get, is how it happened.
I wasn't sent to the orthopedic surgeon as I was told I was going to be, my doctor took me at the age of ten, and sliced me without regard to what the ultrasound tech even insisted he look at before cutting.
After that, no one would touch me other than a local surgeon who did his best to help, but the damage had been done.
The depression didn't even kick in until like, when I was 19. And even then, they treated me for it preemptively--which ended up making me depressed, because the meds had such a drastic affect on me. and negative.

FWF to yesterday, I met with him, and he asked to see my foot, and did a limited exam so much as asking me the usual, where does it hurt? And I asked him to go lightly as it is extremely sensitive, and preceded to show him where it hurts, and gets inflamed, etc. I showed him where it was tingly/numb on the surface, but pressure-sensitive, and that the middle toe was just...ridiculously painful to move. He brushes his finger over the side, wasn't so bad, usual you get from pain clinics, and then out of nowhere, he poked, full out poked my scar. I yelped. It still hurts. ugh.

Results:

So, what came out of Sinai?

-he wants me off of the morphine and the hydro-morphcontin.

-keep taking the sertraline, Gabapentin, topomax, imovane, ativan, and salofalk

-start taking metadone.....

Here's my issue with that. If I get up to a level on the meds that helps, what happens when he decides he can't do anything else...will he see me off of the meds and set up up with something else, or will he just abandon me, or will he continue to at the very least prescribe the medication (which is what my fam practitioner wants out of this)

- He's also setting me up with an anesthesiologist to discuss a nerve block. Now, he thinks it's the digital nerve (which is again, the conclusion Toronto Western came up with). I was hoping he would do his own research to make sure that he doesn't sent them to do a nerve block to the wrong nerve, then go, well, guess that's not going to work...

Well, I talk to the Anesthesiologist on Oct 14.
We'll see what he has to say. In the mean time, I have excruciating pain to deal with and a lot to think about. That's it from this suffering victim of pain.

Can't stop thinking about what comes next not only in the sense of medical institution wise, but, work...how I will acquire income? Ugh...I am a wreck. But, I hear my friend's voice again, telling me not to over think it, so I think this should come to an end.
Ciao

2010-07-21T01:19:00.003-04:00

Somedays, pain leaves you unable to leave your bed for over 24 hours.
You feel utterly useless, and unable to move. Unfortunately, something that hasn't been ironed out when living with others-- let alone, when living with parents-- is that this is something that needs to run its course some times, especially if work is something that is coming up the next day. The people who have been living in pain for 11 years, are a little bit more aware of the process needed to be completed in order to be able to get up and handle 8 hours of work, and I had made plans to chill with a friend as well, so letting my bad day run its course was going to lead to a better scenario all around.
My mother comes home and while I wake up throughout the day, it's not as though I have slept these 24 hours; rather, I haven't slept, hence why I have been sticking around in bed so long.
Again, it's that whole claim that, they know and understand that people in pain need their space-- especially when they're really hopped up on pain pills dealing with severe pain because their asshole doctors won't give them something appropriate, rather, would rather the patient suffer, and result to over the counter, or double dosing.
Ugh, anyway, long story short, sometimes people in pain just need to be left alone if you can't take the time to empathize or understand, then just give them the benefit of the doubt.

Sorry, that ends my rather inarticulate and very blatant rant today.
I will update later with a possibly less angry (or at least, less blunt) rant.
Ciao.

There is a light on, no one is home

2010-07-15T02:25:00.004-04:00

Chronic Pain is a funny thing. It's invisible in the sense that it really lacks any physical signs so bold as a bruise; however, chronic pain is visible in the faces of those who suffer. It's visible in the faces of those who have bothered to stick around.
The MNR (Ministry of Natural Resources) has been handing out newpapers up here to warn us we have had sightings of bears and found evidence of cougars. They're asking for photographic evidence, though. They have the lab results of the scat, they have the sightings of the paw prints and people's testimonies, but they need to see it for them selves...
This kind of reminds me of how doctors treat patients with Chronic Pain They have the lab proof in their hands, they can be doing their pain tests and have the patient screaming on edge, but there seems to be this necessity to the visual. There's no VISUAL MARK. "X marks the spot" doesn't apply, thus, it can't be real?

--on a side note, my dog is currently snoring louder than I have ever heard...--
It's almost 9am, and I still have yet to even nap. What is going on? I do not understand this whole not sleeping thing, some days.
It appears that with the period, comes insomnia, worsening pain, and some other interesting and pain-staking symptoms. Ugh.
More time to spend with the ratties.
I will update again, soon with something far more relevant I am sure- but no promises.
Ciao.

Poem? Yes...a poem....

2010-07-12T22:55:00.003-04:00

Ok, so I couldn't sleep and the pain has been rather bad these past few nights. Please bear in mind that this is my first poem I have written, but I just had this urge to say something about the pain.... Here it goes.

As I lay me down to sleep,
My pain begins to make me weep.
Every day, a constant fight;
Every night, no end in sight.

A lonely road but you haven't a choice;
Longer you walk, the fewer the voices.
This burden is yours-yours alone to bear;
an illness like no other, you suffer through it silent and scared.
People leave, can't be bothered.
You don't quite hate them for that, rather you envy their freedom,
Wishing you could do the same: if only for a moment.

This journey has room for only one;
If any take a place by your side,
the illness- the monster- will rise.

You dream of better days
Aware it will always be out of reach
Despite the pain; despite the loneliness,
you focus on who and what keeps you strong;
hold your head high
And take one day at a time.

-Shoshanna.
Written on 11 July 2010

The pain has been bad, but I have been working through it, again.
I can't thank my friend, BA, enough for being there. Letting me lean on her when I need to; both physically and emotionally-helping me to have the strength to hold my head high on the harsh days!

Late night thoughts.

2010-07-11T04:41:00.000-04:00

Another day...another night. I don't know what I am going to do about work.
I get this look if I mention that I only work part time since I live at home that there shouldn't be a problem with me working in a full time position.
-believe me, if I could, I would.
It's so hard to sit there and struggle through a monotonous day, sometimes not even making it through with out tears from the pain, and have no one understand that. Then on top of that situation: smile and nod my way through co-workers complaints of every day issues I would dream of having as my concern.
It's hard to feel sorry for someone complaining of only getting 7 hours of sleep, when you're getting maybe two.

--
Pills become a second issue. My doctor is currently ignoring my pleas for help, and so I turn to what I can (legally) to help subdue the bad days. The problem is, I am also battling internal bleeding, anemia, crohns, on top of the pain.
Basically, NSAIDs are the worst, and the culprit of my internal bleeding to begin with, was the Naproxen- but lately I have needed something for the swelling and the throbbing.
They admit I have a tolerance to the new short-term med they gave me, yet will not allow me more than 4 per day, though it does say you can take one - two every six hours.
As such, I have turned to Ty1 to help take the edge off. Unfortunately, it isn't one here or there; it's three or four, here or there.
The ativan barely works...
Ugh.
Pain Clinic in T-21 days.
God I hope these guys can help me. I left my doctor that had me terrified...no...petrified of every day of my life, and now I just have one who does jack. And my last time at a Pain Clinic didn't go so swell.
Being a child going through chronic pain, you are judged totally different. So I am hoping as an adult, they will be more open to what I am saying, and less what my parent's are saying. (They used to ask "so how's mommy today" in this demeaning way. They believed the guilt, as well as just their reaction to the pain (almost like positive reinforcement) was playing a roll more than the pain itself.)
Worse etiquette: Taking a terrified and violated child in a back room and telling them they're all alone, and they always will be. That's another point of this blog...NO ONE SUFFERS ALONE. If there is one thing I wish to have come through this blog, it would be that message.

Screaming, but nobody seems to hear...

2010-06-03T04:12:00.002-04:00

While I took on the understanding that leaving my abusive doctor would lead having to deal with a whole new fight, I did not expect to be denied help based on the fact that he reports to a friend of the doctor that I left on bad terms.
If anyone has seen that episode of Seinfeld with the chart that follows Elaine around, naming her as a "difficult" patient, that's what I now feel like.
I have this constant habit of finding people in the medical profession that do not want to do shit to help me and are content with the fact I am getting worse.
The most recent item I had to come to terms with was being diagnosed with a second chronic illness: Crohns (or Colitis), they're still testing. Basically, they noted some abnormal cells from the biopsies they took when they were trying to find out why I was anemic, and instead, noted that, as well as a severe inflammatory issue with my colon and well, all that fun stuff.
So, I am not on MORE medications, but I have lately, been absolutely useless. I mean, I have been bad for the past year and a bit now, but in the last month and a bit, I am absolutely bed ridden. Every ounce of movement is an effort, even crying when the pain gets bad, is a great effort. How pathetic is that?
The medications are doing nothing and I want to throw up 24/7.
I went to my physician and asked if we could look into changing things up a bit since when I first saw him, he seemed eager to take the case, and now he is absolutely terrified. He won't even think about altering any doses of any of the meds.

"Why don't you just find a different doc in a new township?" you may ask... well, the same reason I stayed with He-Who-Should-Not-Be-Licensed for so long. Not only did he have utter control over my medications, but in this silly little country, if you want to change doctors, you have to go through something called Health Care Connect. Now, when my doctor neglected to inform me I was anemic in September, letting me get worse until getting to the point of needing a transfusion in November, that was it. That was a turning point. I was sent to the Odette Cancer Centre in Toronto to be treated, and in the process, was asked a bunch of questions that led to me having a complete breakdown in the office from fear. The hematologist was utterly astounded at how a patient could be that afraid of their doctor (at that point, I was afraid of him withholding my medications since he threatened to do so if I had help beyond him- and I am not just talking pills. He wouldn't let me see a woman gyno, that's how possessive he was.)
Anyway, I was utterly broken, and so at that point, I began the search for a new doctor. They informed me I would have to give him notice, and then it would take at the least, three weeks to detach from his office, and another four to six weeks if I was "high priority" to get matched with a doc. I couldn't take that chance with the medications I was on. I ended up finding a place that wasn't yet listed with HCC as they were two med students just starting a practice. Well...now I am learning THAT issue, too...hmph

Anyway, so, I spend 98% of my time as I did 10 years ago, screaming, limping and balling into a pillow. As I live on my own, I barely eat so I am always dizzy, as well, but I just don't have the energy. I never considered myself as someone who would let the condition win, and get me down, but my actions speak otherwise. I was having a bad day and I just lost it when my best...and really, only... friend was visiting. I made a mess, spilled dinner, broke a plate, and was in pain, so I stabbed my cupboard. I say this here because I am utterly ashamed, but there have to be others who have had similar problems. It wasn't like I stabbed it to kill, it was just that or harm myself with the knife I was holding at the time. So, I plunged it in, and walked away, and broke down.
She is amazing though, still listening, and still standing by this wreck of a human being.
I used to say that if it weren't for my pets, I would have little to fight for, but after everything she's done and been there for me through, if it weren't for her, as well...
Sorry that this post is utterly scattered. I am a wreck, it's 4:30am, and the medication is barely taking the edge off.
Through all of this, I still say to others, find those anchors in your life, and never let them go.
Thank you, Edge, for giving a damn. You are an amazing friend, and your gestures- ie, the book- means more to me than you will ever know. You do more than just tolerate, you listen, you understand, and you have compassion.
<:3))~~~
Shoshanna

Mourning

2010-04-18T02:43:00.001-04:00

When you lose someone, through death, or even just through growth, there's a certain part of you that needs to mourn that loss. The same can be said for Chronic Pain.
I was recently doing an interview on my personal pain narrative, and certain things became ever evident to me that I have yet to actually mourn for. As a child, your ability to keep up with your peers, play games such as cops and robber, go trick or treating, walk in the sand, go running, swimming...anything like that, is integral to your acceptance.
I was at an age, I lost all of that. And while I am not overly upset about being a loner or being bullied through my life, it is more the cause of the bullying. See, if I were a normal child, being picked on because I was a weird kid, or a kid that merely got on people's nerves, or hell, just someone that people didn't like...that's the normal course of bullying. But I was bullied due to my illness. And it wasn't only children, the teachers were unsympathetic, and at times, the antagonistic ones. I hope that these days, with the awareness, while limited, these will be less of that, or at least children with this illness can feel safe confiding in their teachers without the fear they'll be just as bad.
I just thought I would also use this forum as a way to go through some of my own personal mourning:
with my pain, I cannot place my foot on sand. I can never go to beaches without experiencing extreme pain.
I can't run, I can't walk bare foot on grass without pain. I can't sit for long without pain. I can't stand for long without pain
I can't go to concerts without pain,
I can't even stand the bumps on the road.
The water temperature changes are unbearable.
There are so many more to do with pain, but those are the main ones.
--------------------
As for other things...I have had to mourn losing my place at my university due to health concerns, and being ostracized by most of my family.
the face I may never have a child of my own.
The pain has spread, and thus, I may never be through with it
------------------------------

With Chronic Pain comes a handful of psychological issues that people have to deal with. I know that it is hard for me to answer on this completely objectively, as my case is a little unique. It wasn't something that I developed over time, but rather something that was done to me.
Also, part of my PTSD is also amplified by an incident that happened in first year of university (sexual assault/rape).

I do know, however, that leaving my apartment is followed with a huge apprehension. All I can tell you out there, is to never give up, because once you get outside, it's the best thing for you.
Never give up on life and living life, because of fear.
There are ridiculous odds facing us in Chronic Pain: we have the highest divorce rates, and depression is expected without question by doctors, before they even get to know you or make a profile of you.
Fight those odds, and don't let them run your life.
Take risks, and defy those odds, and if they happen, well, still don't give up, because as long as there's hope, there's a chance.

Another sleepless night in Peterborough.

2010-04-09T01:41:00.004-04:00

There is sometimes no better motivation than a sleepless night to do some thinking.
I am sad to say that CNN, one of my favorite news sources, did not take my complaint seriously, and lately there have been more and more "reports" about celebrities abusing prescriptions. The question then becomes: what about those who are legitimately taking them for pain and for managing a condition? A lot of people have begun to hit up this new favorite phrase: well, exercise and eating healthy is all this society needs. We don't need all these pills for every little problem.
I would love to tell these people that they are sorely mistaken. That was a response taken off a comments section from a website that I no longer can find, but it was announcing a new pill.
The CNN report was looking into pain clinics. The headline for their video-report was "Pain clinics: Legal dope houses?"
That right away sets a bias.
I did however, indulge and watch this report, and was so deeply offended at the lack of reporting that went into it. It appeared as a complete one sided opinion piece. However, it was not listed as opinion, nor was it in such a section: it was on the front page.
The report cited such sources as third party users of stolen or illegally acquired prescription medication, asking for hearsay on the reasons for why the individual sold it in the first place.
Another source was someone stalking the patients, awaiting someone desperate enough to sell some of their prescription to get a few bucks.
Third...she looked at the license plates and made an astute observation that they were from different states

I would like to discuss this a little.
I understand that perhaps there does need to be better regulation in SOME areas, but putting a stigma on pain clinics such as this reporter did, merely causes a problem such as when the next town decides to finally get one, since so many are lacking, they may not be able to because they will be protested to on the same basis safe injection sites are, even though the situations are entirely unique. I travel to Toronto to go to a pain clinic because there aren't any in my area. And I know there are more in the states, but they aren't traveling there to simply get prescription drugs; they're driving all that way to get help.
This reporter spoke to not one physician, nurse, or patient that went there. She also did not even discuss or mention the illnesses that drive people to such lengths as crossing state lines, to seek help.
Medication can cost an insane amount of money. And some months, some of us in Chronic pain, though we try not to because the consequences aren't worth it, we miss a pill here or there. Some are desperate enough to sell left overs so they can pay for their next prescription. This is the double edged sword. We're stuck on over 8 medications for pure survival, but we can't afford it. We can't function...Some of us fight, some of us fight in different ways. And some give up.
You can never understand what it is like until you have been through it.
The pain does not give you a break.
Some doctors for us normal patients; the un-famous ones. We can get abused and neglected, and there's very little we can do- at least in the Canadian system. They are tough to release pills. Sometimes, they manipulate with that power.

Anyway, tonight it kind of a bad pain night, I am listening to Petty, and in my "comfy clothes" as even the fabric on my skin hurts. So I think I may try and take a bath if I can handle the water.

I have a few posts I want to write about, and I am sure so many can relate to. If you come across this and have pain, feel free to share your story. Or even if you know someone in pain.

I can't tell you how lucky I am so have my best friend stand by me non stop after everything that has happened. She is wonderful, but I know it isn't easy, and if you're someone like that, please feel free to talk on here, also.

Catching up...

2010-04-03T20:46:00.002-04:00

It has been a while since I have posted, but that is not to say that I have not been dealing with Chronic Pain; in fact, it is due to that very reason it has been so long since I have had a chance to write.
Since my last post, not only has my illness progressed, but it has begun to seriously effect my other aspects of my health to a measure I had yet to experience. I had experienced some decline in my health that at the time I assumed would be the extent of it, but in about November of 2009, my health declined to a point where it called for drastic measures to be taken.
The fiasco with my physician dragged on, and up came my physical where I had emphasised to him my worry about a lack of periods I had been having for almost 4 months, and a drastic reduction since March of that year. He knocked it off as "stress" despite the fact that there was ample evidence to the contrary.
During that visit, I also had blood drawn (a usual occurrence to monitor my Kidney function), and was told that off hand, everything else looked fine.
I went in for the follow up in three weeks, and he had the results: he told me that there was "nothing spectacular" in the results to discuss. It was a quick in and out visit, and I was distressed since I had been experiencing increased levels of anxiety, troubles breathing, less ability to function and even get out of bed, and other issues. He was aware of all of this, as well as its time line, and as well as its impact on my attempt to attend school. A mere month later, I was leaving class and collapsed. I live three hours from my family physician, so I decided to go to the clinic at the school. They took blood immediately, and I received a call the next day getting me into the hospital and a process started to get me an appointment at Sunnybrook- one of Canada's leading hospitals. All of this from one fifteen minute visit. She also discovered an infection that he should have diagnosed or at least been suspicious of by the symptoms I had been complaining about, and she reviewed my blood work and allayed my fears about my life permanently wasting away to a position where I would be in the condition I was in at the time. I had been diagnosed with severe anemia, and at the time she took my blood, I was utterly deficient to the point she wanted to get me in for a transfusion, and Sunnybrook (where there's usually a year wait at least) had me in in three weeks.
She reviewed my chart from the appointment where I had "nothing spectacular" in my chart, and was appalled at the fact he didn't at least have me on Iron.
This issue here was a frightening experience, but there are a few things that I take out of it, and I hope anyone that has read it or listens to me complain about this, does also, and that is that not all doctors are neglectful. I will forever remember the compassion and care that the doctor and nurses had at the clinic I went to where I was terrified, embarrassed, inarticulate and utterly a mess, and they took care of me.
Also, to not take every doctor's word as the gospel truth. If I had, I would probably not be here right now. I have fought hard all my life, and only been defeated a few times. And even now due to other circumstances I can blog about later, I sit here, contemplating the fact this is one of the last blogs I will be writing from this balcony, but I am not defeated. I am walking away with my head held high to attend to my condition and concerns- but I will be back. You damn well better believe it. I have been battling this for over ten years, and can't even recall a time in my life where I was without pain, but it hasn't overcome me. I can recall a lot of time where I have overcome the pain and had an awesome time. Having amazing people in your life helps- even if it's only a few-sometimes that can actually be preferable.
Finally, that pain doesn't have to control you, nor your personality. You can rule your life and the person you project to those around you, even when you're battling the pain. It's an icky aspect that will rear up once in a while, and sure, some people won't be able to handle it, but those who do, your friendship will be so strong- not because it has anything to do with the pain, but because it's been tested by the elements.
LIVE, RISK, and most of all, BE FREE & HAPPY!
There are others out there going through a struggle also. Fight for yourself, for those you love, and for the others fighting this condition without much support, because there are so many of us out there, but not a big network yet.
But with the help of the World Wide Web, we'll make our voices heard, and we will no longer suffer in silence.
Thank you.

HeartBreak...

2009-07-07T03:24:00.004-04:00

Having a chronic illness is hard enough to deal with as the one suffering through it. People who have told you they love you and understand (as much as they can) and tell you they'll help you through- always count on them....I wish it were possible.
Even without some of the already negative occurrences in my life involving abuse and sexual harassment, the concept of love and devotion is really not one I can see happening in my life.
I have a hard time trusting people for numerous reasons; it goes beyond the normal caution one usually applies to new people and relationships- but I think it unnecessary to get into the psychology of it for the purposes of this blog.
Anyway, so my proverbial wall I had developed as a safety net, managed to be penetrated by one guy, a year and a half ago. He totally stole my heart.
He was disarming. I don't know what it was about him, but all my fears- and there's a lot- almost ceased when I was around him; including regarding my pain.
In the condition I was in when I first met him, I was afraid of what the future actually might look like. It wasn't showing to be very promising with the lack of improvement, and rather sharp downhill tumble I was taking.
At the time, I was also living in a situation not conducive to studying, or hell, to someone with NO prior illnesses; let alone someone suffering from an abundance.
Our relationship took off fast. 6 months in, I was practically living at his house so I could study, and for safety reasons. Nonetheless, it was great. We were able to do our own thing, and hardly fought... I don't know, I finally felt safe, and welcomed. It was a feeling I miss. Losing that relationship, I lost more than just a boyfriend; I lost his family, and that is a big deal to me.
About a year and a few months in, it seemed like it was almost a chore to hang out. He would come home from work, and the slightest thing would set him off, and I am in a lot more pain, and also being jerked around by the doctors, so anyway, almost every night ended with me crying and him punching the crap out of anything besides me, thank God. Needless to say, with my history, that scared the crap out of me.
But I was trying so hard, because we had had endless conversations of a positive future. We had things planned down to what Dog, we wanted.
I do believe despite his denial, him getting friends from work, ended up influencing his choice to break things off. It seemed that his time with them was more precious than that time we had together.
I believe one of the times out of many, I begged him to tell me why he said the reassuring things he did at the beginning, and then now all of the sudden "can't handle a relationship", he answered that he thinks part of it could be that he was "afraid of ending up alone".
There's just no good way to take that.
Anyway, I have given up hope on a lot of things, and one being the chance for any revival of what we once had; I think he just doesn't give a shit. You know, if it is something that's inconvenient all of the sudden, well forget trying to work it out, it's easier for him to just end things. Screw what emotional reprecaution it may have on the person that you told you wanted to spend the rest of your life with- that you loved, and that you'd never betray...
I think also, that the fact I was not winning the battle on this damned disease, was too hard to handle. Especially the bad days.
He once told me that the way I was headed, he was beginning to have doubts I would be able to contribute financially, and that he'd have to support me.....
Oh, that pissed me off.
I could understand it as a legitimate concern...but please...have the courtesy to talk to me about it. Not just sit there and steam about it, and then use it as a reason to break up. Because there is no way I would expect or want to make him entirely responsible for my well being. I have always been independent, and I would like to be able to retain some of that while being in a relationship. I view relationships as a sort of partnership. If I have to take time off or something, it shouldn't be a burden. I don't know, I guess despite the all the feelings of safety, and security for the first time in my life- I was duped.
I feel like I can't trust my instincts, and I am petrified to get in another abusive relationship.
With all I have happening in my life, something like that, I just couldn't handle. It took me three years just to START dealing with it....I am not ready to relapse.
I lost a lot due to this condition, and I am afraid that love is one more thing that it will rob me of. I hope it isn't true, but right now, I feel so scared; so vulnerable; so lost....I just don't want to let go.

Introduction

2009-07-04T18:30:00.003-04:00

This blog is entirely personal reflections and experiences, and a search for clarity and understanding.
The experiences of a person with Chronic Pain, are hard to understand; especially when you've met the person years into their journey.
My personal journey has left me with a lot of questions, and a lot of frustration. It's difficult to comprehend the loss of one's self, and having to re-identify yourself without letting the cynicism and pain, control who you grow to be.
I was a mere ten years old when I was struck with Chronic illness.