Dr not so great Pain Managment Specialist from my past

I went to post a response/comment on a petition about the DEA and their crackdown on doctors/pharmacies and how it negatively affects pain pacients… well when I started writing I couldn’t stop (Yes I’m in Canada, but USA policy often affects Canadian an changes how people think an act, this is also why so many Canadians keep up with the USA elections as they affect us more than you know often. So anyways once I started I clued in this post wasn’t so valid about the topic at hand more a venting about an old doctor/doctor’s office I went to. Still the petition got me thinking an writing, (I rewrote an edited version shorter and more to the point to add as a comment to the petition, this petition; change.org/congress ease DEA's Grip )
currently I have had more luck than most getting my pain medication, but that has not always been the case.

For a long time I had to travel over an hour to my doctors every 30days, (without a driver’s license due to medical issues) take extra medication in order to make the trip and then once there be handed a cup to pee in as though I was a junkie. The part that floored me was that the instant piss drug test they had on hand in the office never once registered I was taking my meds. At the time of each test I was often on the max dose of my medication in order to be able to handle the travel, but still the drug test I was given came back negative each month I came in, and then I was accused each month of possibly selling my medication. Despite this seeming evidence I was not taking my medication, I was still re-prescribed the same medication each month. Finally after the 4th month of this routine I told him to order a blood workup to test for my medication as I knew I was taking my meds and was getting frustrated with being accused of selling my medication every month and him not even believing my pain situation. I figured logically the doctor would accept my suggestion and order bloodwork, instead he said it was unnecessary and decreased my prescription despite the fact that as time went on my pain was getting worse.

The next month I came in I was handed the sterile urine container and told to hand over my coat an purse (this was new) then I was lead over to the in-office washroom (until then I had used the public one down the hall as I was told to) where I was told to pee into the cup, as I did the newest doctor in the office stood against the door. Well seeing as I also have bladder issues at times this made it nearly impossible to pee, but I managed. This new routine stayed in place and it was now only the new doctor who would see me, who would full out yell an make threats when once again my urine for some reason showed none of what they thought it should. This doctor also would demand to hear why I needed medication, tell me I was too young to be on medication and that I shouldn't need it, yet had never read a word in my file (and was working in a Pain Management and Rehabilitation Clinic). It seemed if I stood up for myself my medication dose wad decreased, if I sat there and took the abuse nothing changed I still hobbled out with that months prescription. At one point when I saw my original doctor in that office again, I asked if there was anything else we could try as the current medication was far from managing my pain, and most of the time I couldn’t take any medication considering pill count at that point. He told me there was absolutely nothing he could do for me and that there were no options for my pain, which I would have to learn to simply live with it. It was at this point I decided I should try to get into a different or better pain management clinic as, it wasn’t for stronger more effective meds necessarily (though that was a hope) but I couldn’t stay with a doctor who had given up and told me to do the same when I was still in my early 20s with progressing pain issues. 

At my late October appointment with my original pain doctor, I went in knowing I would be seeing a new pain specialist (with multiple doctorates in a wide variety of areas, and was world known) in the middle of December so I only needed to deal with this current doctor for this one last appointment hopefully. Well during the appointment I was drug tested like normal and as always none of my prescribed medication showed up, however one pill I had taken 2 weeks before that I was given by the ER when my back was in a total spasm DID show up in my urine and the doctor lost it on me, calling me a drug seeker and an addict (this confused me as he also would accuse me of not taking any medications prescribed... so how can I be both, but that's another issue), well I explained the situation but apparently he now thought I must be selling my prescribed medication in order to buy the one that did show up on the drug test (that made sense to him rather than simply calling the hospital to verify my story).  In his anger he told me he would only give me half my prescription (once again, so IF you really think I’m selling them than why are you still giving them to me?). Well I told him I couldn’t manage on the current prescription halved as November was a busy month( in fact I’d tried to set aside and save some pills the last couple months in order to have more over the very busy November/December holidays so I could manage in public without feeling miserable), well he said he didn’t care. It was at about this time I immaturely stated that I was glad I would be seeing a new pain specialist in December, well that caused him to rip up the script and tell me something along the lines of “good well you’re his problem now”, I was stunned and asked if he was really going to send me on my way with no medication, and he told me that I didn’t need any medication as I had a new doctor and sent me on my way. 

Walking out of the office I couldn’t help but be scared, this was the end of October, I wouldn’t even meet the new doctor for at least 45days, how would I manage. Sure I knew I had a few extra pills saved up but not enough to even come close to helping really, heck it turned out the extra pills I had saved without mentioning to my doctor weren’t even enough to help with my normal safe withdrawal (many medications you can’t simply stop taking, the effects of stopping to quickly can not only be painful an miserable but can be very dangerous). I tried to stretch them out allowing myself to have a withdrawal period but in stretching out the medication the way I was I still suffered from many of the withdrawal issues, when I could no longer handle it I made a desperate call leaving a phone message to my soon to be new doctor explaining the whole thing, he wrote me a small script to help me do until I saw him, not enough to manage pain so I was a ball on the couch for the next few weeks but I wasn’t a ball on the couch who was also in withdrawal. 

This is where I will end.

Day 3. But I had symptoms since:

Day 3
But I had symptoms since: 



Part way through my first menstruation cycle is when the pain really started to hit me. I was 14 in fact my birthday had just passed and I was feeling weird but didn’t think about it, I went to sit on the toilet and saw blood oozing into the bowl from between my legs. I burst into tears, as far as I was concerned that blood meant the beginning of the end when it came to being pain free, to do what I want when I wanted, the end of being able to wear what I wanted, the end of having good attendance at school or anything. Sure I didn’t know these things to be true in my case…. Well I didn’t know YET. But my mom had been very honest about how her period affected her life (she was diagnosed with endometriosis also) so I had reason to be scared. Sure there was no guarantee that it would mean I would have the same issues as her, but her mother had terrible periods that would leave her crippled in pain and unable to move, and so did her mother (so my mom, grandma, and great-grandma) all sounded like they suffered from endometriosis.

After I stopped crying and was able to tell my mom why I was crying in the bathroom I was able to find the amusing side of it all. We had recently moved to a very “white” town, that was really rather wealthy, or everyone I went to school with was, so while I was crying about the arrival of my menses, I knew other girls in my class were celebrating the arrival of threes, bragging about it and so on. For me it was my dirty secret, as none of the girls understood, I simply had to be making it up, as THEY didn’t lose control of their legs while on their period, or throw up…… As boys had nothing to compare it to I most often found them the most understanding so tried to stick with more guy then girlfriends.

Photograph credit: "Cubicle 5" by AbsentAsI on deviantart.com

Procrastination the best way to Avoid my current reality

I’ve always found myself to procrastinate, and this week is no different. I think it started out as a coping mechanism. As a very young child if I was told about something early on even if it was just letting me know we’d be going somewhere I’d start fixating on it and get myself so worked up that before we were to head out I’d be sick to my stomach, and at times it would make doing what was planned impossible at worst and at best un-enjoyable due to how sick I’d end up feeling. After witnessing this, my parents would do their best to hold off on giving me information about trips, special activities or any plans that might get me excited until the very last minute so I wouldn’t get myself worked up. Well now I find I in some ways do the same thing to myself. On one hand I like to know things early so I can be prepared, BUT if I follow through with preparing early I get worked up. So here I am 1day 23hours from being on the operating table and none of the things I wanted to have done prior to surgery are done yet. I’m trying to get myself to do them now, but the moment I start to get into the swing of things I feel this pit in my stomach, preparing makes it real. If I just continue to procrastinate I get much less worked up, of course it also means I won’t be at all prepared around the house but at this moment in time feeling terribly sick and filled with anxiety is the more present issue.

If I was smart I would have prepped as much as possible last week, when I could also take the anxiety meds I was given due to this situation I find myself in, but than there’s a good chance I’d be prepared but find myself curled up in a total meltdown all this week. Who knows what would have been best. I know that I’ve had my meltdowns this week, but not as bad as I would have expected and in fact most of my meltdowns have focused around the fact I’ve been in a shit load of pain this week and it was just too much to cope with the pain and knowing I’d also be having surgery for a totally separate health issue that could turn out to be yet another health related nightmare added to my plate.

I think I’ve done well this week considering. Monday I ran out of my pain patch prescription without cluing in, normally I can just call and he will refill them when I am in a pinch but as I haven’t seen him in 6+months his reception is acting as a road block and told me I would have to see him before he would refill the script. She also suggested I could speak to my family dr. about it, well my family dr. I can’t see for over a week and I can’t go without my pain patches. luckily I hadn’t used the additional 1/2dose patches he prescribed so I had some of those still with refills, although I didn’t have them on hand so I went 24hours with only half the medication I’m prescribed. Now instead of one full dose Butrans patch I now have two 1/2 dose patches on, works the exact same its just not a long term solution as I am prescribed the half dose patches for a reason, to use in addition to my other patch as needed. Just irks me a bit as I know if the receptionist passed along the message the pain management dr. I have would have no issue prescribing another month or so until I can get in to see him when a cancellation appointment becomes available. The medications I’m on are impossible to abuse at least in any common way that I can think of and I’ve been on them for 2years now so I don’t see the issue but whatever I will deal with this mess after surgery is over with.

If I start to think about surgery though I start trembling, it’s weird though as someone who has been but under for 4 previous surgeries none of them fazed me really. I guess because this one affects a part of my body that I connect with femininity, sexuality and my being. It’s the last part that makes me female that hadn’t yet mistreated me, won’t do into all that but all the other parts that connect to women and their “femininity” have all seemed to stab me in the back so frankly I like my boobs, and I don’t want them messed up. This surgery will leave me with a scar even if the surgeon is able to do what she hopes to and hide as much as possible. The surgery could also leave me with a very visible keloid scar, in a very visible spot (even in my regular clothing) and possibly a clearly visible size difference between breasts and then there’s the chance of puckering or other healing issues. Even if it goes “perfectly” I am still 26 and having a lumpectomy. It also means that the last part of my body that I connect femininity and sexuality to that I didn’t yet hold some grudge against is now causing me issues at the least and at the worst trying to kill me. I of course hope that after surgery that pathology comes back and the tumor was cancer free, but having had a tumor found I’m sure I will always have it haunt me that what else or how many more tumors will show in my breasts in the years to come.

Pain Mapping DIY

I love the world of the internet and super easy printable
here there and everywhere but its annoying how often i go to find one and either it doesn't exist or the person made one close to what i want but either way to large/poorly designed to it wastes a ton of paper or is missing important parts.

This is the case when i tried to hunt down a good pain mapping printable. So now i make my own, getting input from other chronic pain peeps to make it as universal as possible, than go back to my mockup and alter as needed. This is my temp mockup of the pain map (not the printable) that will be altered tonight.

When all said and done i will have an easy to use PDF printable that i can share and others can use.

Sometimes knowing certain computer programs really helps with a chronic pain life.

quick update

Last night pain would randomly show up, in fact thats the way it had been since last friday night i would randomly have pain spikes and then it would lay off.

When i learned last night that the period was for sure on its way, i made sure to set out pain meds, a juice box, a clock and a flashlight on my side of the bed so if the pain woke me up i could take care of my self rather then needing to wake up scott to get me the nessisary items.

Although i didnt wake up from pain, but rather his alarm clock i am glad i was prepared because 2seconds after i woke up my body started to reconise how much pain i was in. Now i am at the point i am on my max demerol dose (2x 50mg) every 4hours (havent hit for hours) and yet i am still in a lot of pain. I am not moving around since that makes it feel even worse.

I beleive my period showed up early but because of when the ealry pain started i thought it might be showing up early. I still have to check www.mymonthlycycles.com to check that it was forsure early though.

Its been a long time since i have done any updates so i might do a none pain/period update later today also, of resources or Endometriosis awarness month typ information.

ugh!

i really only deal with one painfull thing at a time overly well.

Becayse of this i am not dealing well at the moment.

My abdomen is really very swollen, so that is painfull to have anything touching it or moving at all.

I have a cold so it seems every mucel and bone in my body hurts and is acheing.

I have hickups that are really hurting with the whole swollen and looking preggers thing.

I feel exausted even though i got 13hours of sleep (broken up but still).

And my nose wont stop running. There is a good thing about the nose though, it seems to suggest the whole body acheing might be because of a cold and not something elce messing with me so it should clear up shortly i can hope.

Hates her life at the moment, or at least her bladder.

We just swtiched to nights since that is Scotts shift this week (though ended up early).

I just got out of bes at 6:40, it is now 7:15
So far, i have had to urinate 8 times.

First time was extreamly painfull (tears came, as was 2nd and third) still painfull but now some tears are only comming from the frustration.

Its looking like this is going to be a REALLY long day. When we go downstairs i think i will try being on the couch with my feet up, sometimes that seems to help slighty.

oh i wish i had those new meds i havent yet fully explained but havent been able to fill the perscription for since no compounding pharmacist handy. UGH!

So this is the micro-mini update about the cystoscopy appointment.

Basically, it was absolutely horrible. First issue was I was scared, the pain doc suggested I take Demerol prior to the procedure since he thought it would help me mellow out. Well turned out that day I was in pain anyways so I ended up on max Demerol before the procedure.

Good fucking thing to, since who did my cystocopy? A student, who I firmly believe never, did one before in his life since he asked the nurse how to do EVERYTHING. She also kept pointing out when he was messing up, but wouldn’t get the hint. Like when he over filled my bladder on 3 different occasions, and the overfilling stretched my bladder to the point I was internal bleeding. That of course made it harder to see inside if there was any blood in their without his doing.
So the procedure was extremely painful, but mainly only because the doctor had no idea what he was doing (that’s my guess at least). Then the main doc (the teacher) came in, pointed out some of the goofs the student made to him (the ones he could tell since I was clearly bleeding from his students work). He looked around inside. Then later we all met in his office and he informed me that although I am having so many weird symptoms that sound like IC he can’t actually diagnose it or anything since there was no proof of anything inside.

So I left then to go get my kidneys ultra sounded to see if there was anything weird there. There wasn’t. So there is no explanation for my issues, but he gave me a drug to help with the frequency issue (yet to try it) since it seems weird to treat one of like 5bad urinary issue symptoms and ignore the others and have no answers.
Then I got home, and had to pee... well I guess because of the tearing he did or something I kind of seemed to scab inside. So when I tried to pee it hurt more then I think any pain I have ever felt (and I have endo lol). I literally had to bite down on a towel in order to manage the pain of trying to pee.

Then came the blood.

Luckily by the next evening the bleeding from my urethra stopped.

hello, what is endometriosis, and awaiting my "bad days" with no medication to help.

I am Canadian, been all my life.
Born and raised in ontario.

My life was rather pain free untill the age of 14.
Then the pain began just as my period did.
Almost 4 years later i would learn that my pain, short cycles, and (eww) heavy bleeding were all because of a disease known as Endometriosis.

What is Endometriosis, well that i hope to answer many times, and many ways in this blog.
But i will start with cutting from "the endometriosis association".

Endometriosis is a painful, chronic disease that affects 5 1/2 million women and girls in the USA and Canada, and millions more worldwide. It occurs when tissue like that which lines the uterus (tissue called the endometrium) is found outside the uterus -- usually in the abdomen on the ovaries, fallopian tubes, and ligaments that support the uterus; the area between the vagina and rectum; the outer surface of the uterus; and the lining of the pelvic cavity. Other sites for these endometrial growths may include the bladder, bowel, vagina, cervix, vulva, and in abdominal surgical scars. Less commonly they are found in the lung, arm, thigh, and other locations.

This misplaced tissue develops into growths or lesions which respond to the menstrual cycle in the same way that the tissue of the uterine lining does: each month the tissue builds up, breaks down, and sheds. Menstrual blood flows from the uterus and out of the body through the vagina, but the blood and tissue shed from endometrial growths has no way of leaving the body. This results in internal bleeding, breakdown of the blood and tissue from the lesions, and inflammation -- and can cause pain, infertility, scar tissue formation, adhesions, and bowel problems.



i am starting this blog, since i want to have one, that is about my pain (chronic) that people who either suffer from chronic pain can relate to me, or those who know me can learn to understand things more posibly.

Today i sit here in pain (sitting alone is causing me more pain then laying down was), however i am now in the same room as Scott so we can chit-chat.
I am not to take my perscribed pain meds, my "copeing meds" that were perscribed to me are less effective then i find advil liquid jells to be (and for my daily pain, useless, ... my bad days.. WOW. i think M&M's could work better since at least they are fun coloured so they make me smile. And the chocolate creats happy endorphins!) So the meds i have to make my daily pain "manageble" is of no use to me, I AM takeing it though.... and nooo demerol.. the pain is not sickening today but often is the last few days (now i have to take anti-nausia meds just to not throw up from the pain at times, on my normal days)

My worrie lies with the fact i know i will have some "bad days" comming up. These bad days generaly require the use of heat pads, max demerol, and anti-nausia meds to not be begging to go to emerge to get a shot or iv pain meds. Well this time, although i still have demerol pills i want to show the doctor i am respecting his choice to get me off demerol, (and i do, i do not however respect his not wanting to give me ANYTHING to help with the pain, not even for the bad days comming this week)

So now i sit and worry, perhaps i will be fine as long as i dont move... at all. And take loads of my perscription anti-nausia meds & Gravol so i can sleep through most pain. But if my bad days are anything like they have been the last 5years without pain meds, i think i will be asking Scott to take me to the ER, yet again.

but who knows.