Pain… so much… ugh.

I don’t think I’ve ever actually described to anyone how my pain feels to me and what I desperately feel the need to do, to alleviate my pain.

I need a knife.

One of those evil looking ones you see in movies with serrated edges on both sides and a really pointy tip.

I need to stab it down to the bone and run it back and forth to make the pain stop -_-

This is how my normal pain makes me feel.

Or, in a way if I think about it in another way: I basically wanna de-bone myself and scrape the knife up and down against the bone so you get those little shreds of meat piling up on your chopping board.

It’s the feeling of the knife against the bone that I need.

As a side thought: I’ve started my new pain meds regimen that was recommended by the Chronic Pain Consult at the hospital before I was discharged.

It’s working.

Mostly.

I am taking more of the long-acting stuff (3x/day) at the same dose, but overall, the amount of drugs in my system, even with using breakthrough stuff, is less.

It’s good news. But fuck, I am hurting right now.

As a small update regarding my surgery: Everything went swimmingly. The incision has healed absolutely beautifully and you can hardly even tell that I was operated on the job they did was so amazing. I’m still a little owie here & there, but otherwise doing fine. The interesting thing about the whole surgery was that the cyst hanging out on my ovary that they tried to remove laprascopically was the size of a large grapefruit. Craziness.

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Muscle Biopsy Update

I saw FamDoc on Monday for my monthly visit and we had a long chat about stuff.

Turns out I had a busy month of August with appointments left, right and centre all around me.

We went over the pathology report, but since FamDoc’s area of expertise is NOT neurology, we could both only really take a stab at what the report meant. He’s going to send a copy of the report off to the Neuro Doc I saw back at the beginning of the year for the muscle testing to see if he could shed some light on what the report really means.

The two biggest things are:
1) No signs of inflammation in the muscle tissue (woo!)
2) There are noticeable signs of atrophy as well as necrosis going on at the cellular level of the muscle tissue. (not so woo)

The biggest issue of concern is obviously point #2 and what that really means for us — Fam Doc is hazarding a guess that if there’s necrosis going on, then that could possibly be an answer as to why I have the muscle pain that I do. He said not to take his guess as gospel by any means, because again, his area of expertise is not neurology and it could very well be something that NeuroDoc sees all the time in cases like mine and in the end means absolutely nothing.

But like I mentioned a few weeks ago: having some information of any kind is nice. So on the one hand, we have at least the positive sign of there being no inflammation, but on the other we have this rather questionable issue of necrosis.

That’s kind of freaky if you think about it… does this mean I can legitimately say that I’ve got a lil’ bit-o-Zombie action going on inside me??

Amazing… decadent… fudgey… mind boggling, really!

Saturday night, after I got back from the first backyard BBQ of the season, I decided that it was time to start the Cesamet again.

Instead of doing the “smart” thing regarding how to start the new meds, I chose to do the stupid method instead. You know, start at the lowest doseage and increase it a bit a week later. Don’t go for full on “kill an elephant” dose, it will generally make you feel a lot rougher when you wake up three days later…

Here’s the problem:

The Cesamet definitely doesn’t kill the pain, but it does make it so I can choose to ignore the pain (relatively easily) for a few hours if I want to, instead of taking The Moose which is actually kinda cool. Problem is that the pain will eventually make its appearance known under no uncertain terms and at that point I’d better be damned sure I have The Moose hanging around.

And in the end, it makes me an absolute Zombie…. or sleep like the dead… a vegetable… whatever. It’s almost impossible for me to wake up after I’ve had the Cesamet. I’ve had three, relatively decent, days worth of straight sleep which is sort of nice, but weird. Biggest problems: I didn’t get up to pee too often, I couldn’t (care to) get up to eat, I was pretty dizzy/unbalanced, I couldn’t wake up at all! I also fell asleep while talking on the phone with Mom without realizing I fell asleep. Basically this boiled down to being a bit of a worrisome experiment because if I had been left completely on my own, I probably would have slept for days without waking up to eat, drink or take my meds and The Hubbs is very much not a fan of me being so broken.

So we’re back at square one again… still stuck between a rock & a hard place in regards to how we deal with my pain & my pain meds.

*sigh*

So I made raspberry jam brownies.

They were supposed to be for The Hubbs’ work snacks, but I was craving chocolate & raspberries and may have actually eaten a whole slice all by myself, still hot from the oven, with a scoop of vanilla ice cream. I don’t crave desserts too often, but I’m pretty sure that the Cesamet may have contributed some cravings I had over the last two nights.

This brownie recipe is wonderfully simple and it requires no butter or eggs, something I would never have imagined myself trying to make. In the world of baking, I am one of those girls happily encouraging the full use of butter, sugar, eggs and cream to make a proper tasting dessert. The thought of desserts not incorporating any of these ingredients generally confuses me, so you can imagine my delight (and relief) that this recipe worked when I pulled the brownies out from the oven.

The nifty thing about this recipe is that you can take any jam you might have lying around, mix it into the brownie batter until smooth (or as smooth as possible if your jam is dense with fruit) and doing this gives you an incredibly fudgey brownie with the most amazing fruit flavour. Not only that but if you wait just long enough for things to set up just slightly after removing from the oven, you can eat the brownies still warm with a scoop of vanilla ice cream & be the happiest clam on the planet.

Jam Brownies
1 cup dark chocolate chips, divided
1 jar (250ml+) raspberry jam
1/4 cup milk
3/4 cup sugar
1/2 cup canola oil
1 tsp vanilla
1 1/2 cups flour
1/4 cup cocoa
1/4 tsp baking powder
1/2 tsp baking soda
1/4 tsp salt

Preheat oven to 325F
Line 9×9″ pan with parchment & set aside.
Melt 1/2 cup chocolate chips in the microwave, stirring every thirty seconds until melted. Set aside to cool.
In a large bowl with a whisk, combine the jam, milk, sugar, oil and vanilla. Stir well, until smooth(-ish).
Add the flour, cocoa, salt, baking powder and baking soda. Mix well, then add the cooled melted chocolate.
Fold in remaining chocolate chips, then spread batter out into lined pan and bake for 45 minutes.

When the time is up, the brownies will not appear to be done but take them out anyway and let them cool for 30-45 minutes…. Or just wait long enough for the sides of the cake to set up, after being cut into pieces, and serve still hot with a scoop of vanilla ice cream.

Side Note: These brownies were originally a Vegan recipe, adapted, but can also be GLUTEN-FREE! If you want the GF version of the recipe, check it out, here.

EMG Testing Results

I had my EMG testing done this afternoon and I have to say one thing: OW.

Not horribly ow, but ow nonetheless. The whole hour of testing that they did on me was rather interesting, a little uncomfortable, but certainly not as painful as I had feared when it came to the needle probing.

The best way I could explain the feelings of the nerve testing was that it felt like someone was snapping a rubber band at you. While not painful, it certainly doesn’t feel that great… and it’s certainly more uncomfortable when they do the series of 10 shocks at a time.

As for the needle probe, it didn’t hurt at all. It hurt a lot less than a flu shot and basically was exactly like having accupuncture done. The thing that amused me most was that Neuro Doc (of whom I can’t for the life of me recall his name) said the people that find the needle probing most scary & painful are men. Women for some reason have no issues with it at all and it’s only men that end up tearful, passing out (yes, passing out), and blubbering from pain. Really? What gives? Men can’t handle a tiny, wee, little needle prick!? o_O;;; Apparently not.

Anywho. So I now have my very own Neurologist… and he wants Rheumy II to book me in to have muscle biopsies done A.S.A.P. -_-;;;

*sigh*

I’ll have to get a copy of the official diagnosis from Fam Doc on the results of today’s testing, but basically what they found out is that I currently have no nerve problems (yay!) but I do have signs of muscle weakness and damage(?) which explains why my blood tests keep showing elevated enzyme levels.

Interestingly, we briefly discussed my history and found that most of my overall muscle weakness (and the severe leg pains) came during that period of time between my official Sally diagnosis and Hawt Doc putting me on chemo way-back-when. After I had finished my round of super high steroids and the cyclophosphamide, Sally improved as did the muscle weakness/pain. Apparently the normal course of treatment for my muscle weakness is, ironically: Corticosteroids, Cyclophosphamide & Imuran. Guess what I’ve been on and am currently on? :P

So basically, for the last five years, while we’ve been treating Sally, we’ve also been successfully dealing with the muscle weakness issue (way back when) where I couldn’t walk, I couldn’t climb stairs, I couldn’t get in/out of a car and I couldn’t get in/out of the bathtub, etc etc etc…

Had we NOT put me on the chemo when we did to slow down the damage Sally was doing to my lungs, my muscle weakness would have advanced considerably. The thing is, Neuro Doc said that what we’re doing now is pretty much my only option in terms of treatment and just like Sally, this will have flareups and it’s only a matter of time that the muscle weakness will progress far enough along to put me into a wheelchair.

That’s actually kind of scary, now that I think about it.

The thing that bothers me the most, and I think I may have mentioned this 8+ months ago when Rheumy originally brought up the topic, why didn’t anyone think to do the damn testing 7 years ago when I was in so much pain and I couldn’t walk properly? Oh right, I had an idiot family doctor back then who didn’t listen to anything I said. I’m still immensely bothered by this.

So that is what was up today. A little bit of excitement, in that I have a definitive diagnosis of muscle weakness… but a little bit of sadness because I know that it will come back in its entirety, and probably more. *sigh*

Fam Doc Appointment…

So yesterday was my monthly appointment with Fam Doc.

*sigh*

It didn’t go even remotely close to the direction that I had hoped for — because of the weather, I was totally Moosed up and couldn’t drive myself and so had to get Mom & Dad to take me. Bummed me right out. I actually look forward to my appointments with Fam Doc because 90% of the time I have the ability to go on my own and the visits are generally a nice excursion, so to speak.

Yesterday, was not so much. As soon as he walked in the door, he paused and looked at me and said, "How’re you doing? You’re not looking as good as last time I saw you."

That’s never a good sign. If Fam Doc, who sees me once a month without fail, says I am not looking good there’s something up and most likely whatever Hawt Doc’s on the lookout for is most likely presenting itself more visibly than I originally thought. He said I was pretty puffy looking and my skin condition’s looking a little weird/off. Not normal, I guess.

What came about the whole visit was that he thinks Sally is in flareup mode and if Hawt Doc’s got all these tests booked for the next week and some, there is definitely something going on. Having said that, he also thinks that my redonkulous amounts of pain from the last month and some is very much a product of Sally’s temper tantrum flaring. *sigh*
Somehow, I don’t know how it happened, but we spent an entire hour talking about:
a) my pain
b) my Moose useage
c) what our other options are, if there are any, anymore
d) surprise to me: the scared feelings and anxiety that I have of the Moose useage being as high as it is.

We’ve often visited this conversation in its various permutations and combinations. I am still (and have always been) less than thrilled at the fact that I am taking some pretty hardcore pain meds. The fact that as time goes by I am increasing both my baseline meds as well as my fast-acting stuff leaves me feeling rather scared and to some degree extremely vulnerable.

As it stands currently, I am sitting at probably one of the highest thresholds for pain medications that Fam Doc’s comfortable prescibling for. He has lots of experience with patients dealing with chronic pain and this isn’t really the problem, what is, however, is dealing with Sally. That’s where things become slightly murky and uncertain. Just to clear things up a smidgen, and we’ve both come this agreement, if I am in pain and the Moose is what helps for me to live a more comfortable existance which increases my quality of life, then he has no issues with prescribing the pain medications I need.

What we’re both extremely concerned about is: at what point does the amount of the Moose become extreme and dangerous? At what point in time have I become over-medicated? Where is that "line" which defines too much and not enough especially when dealing with a progressive disease like Sally which is what is causing all the problems to begin with?

Are there any more options out there for us? It’s not like we haven’t tried other avenues for pain management. We’ve had this discussion so many times and he’s at a loss. The reality is that if my liver is starting to have problems due to the immuno-suppressants, and as much as I dislike admitting Mom may be right, there is probably a very good likelihood that The Moose isn’t making my liver very happy either.

So Fam Doc is going to call the CPC to see if he can’t talk one of the specialists into seeing me without having to go through the assinine admitting process of the CPC again. No educational classes, no psychiatrists, no stupid group sessions where I have to listen to a bunch of other people dealing with chronic pain recount their own tales of woe while bawling their eyes out in front of complete strangers. All he wants is for a Pain Specialist to see me or at the very least, throw him a bone as to what we can do under his care if I can’t see anybody.

We also discovered during our talk is that I am scared. I am scared of being at a point where we won’t be able to prescribe anything for me and I will be in constant pain with no relief to be had. Or I’m in a position where I won’t be able to get access to my pain medication in a timely fashion because I am in an uncontrollable situation — like being admitted to the hospital, which is the example I gave Fam Doc, and it’s a scary experience which I’ve already had to deal with once before and I really would care not to do it again.

I already dislike the fact that I am in a position where some (okay, one) of my doctors raise an eyebrow as to whether or not I actually "need" to be taking the drugs that I am on because let’s face it: I’m taking a fuck-ton of medication and there is a very high likelihood that they might think that I am abusing it.

That’s the hardest thing — pain is not a visible symptom and chronic pain is even harder for people to understand if they’ve never experienced it before, either first-hand or even by someone near and dear to them. *sigh* And now I am starting to sound like one of "those people" that tries to explain why a normal person just can’t understand the situation unless they’ve been in the same position. I hate that. Blech.

So that’s it, that’s what happened.

I have another appointment booked in 2 weeks time after I’ve done all my tests for Hawt Doc and then we’ll see if Fam Doc managed to come up with anything by then.

As for today, I did my PFTs and for some reason I’ve been having an absolute monster of a time trying to breathe. I don’t know if it’s the crazy Chinook that Calgary’s experiencing or what. Breathing is hard and my chest is not feeling at all good. It honestly feels like I’m not taking in any air for some reason and it’s quite a scary feeling.

Let’s hope that tomorrow’s a better day, as The Hubbs tries to remind me.

*sigh*

Happy Belated Thanksgiving..

I wish I could say that I had a wonderful long weekend, but I would be lying in a big bad way if I did so.

Last week I had my monthly visit with Fam Doc and he did some meds changing — The last few months have been a rather unhappy time for my tummy everytime I take The Moose. Lots of pain was involved everytime I took it and so we decided to see if perhaps just using straight up morphine might work.

Well, I am happy to say it does work for pain, once I figured out the proper doseage and doesn’t upset my tummy when I take it…. But I discovered several days later that it royally upset my GI Tract like nobody’s business, as all narcotics are wont to do.

My insides basically stopped moving for 5 days and I only finally got relief on Sunday late-late night after a lot of stuff was involved: lactulose, prune juice, gripe water, ex-lax, colace, milk of magnesia, fleet enemas, suppositories, high enemas, tylenol for the fevers and extra steroids for the vomiting…. a lot of stuff.

I was pretty disappointed about the whole affair because Mom & Dad got back from their three week China, Macau & Hong Kong trip on Thursday night and Sunday was supposed to be our Thanksgiving celebration where we could be all together since their trip. Needless to say, I spent all weekend, from Friday through until Monday, yesterday, trying to make myself feel better. It was a rather trying weekend that I care not to ever have to relive ever again if possible.

This of course means that I am trying to decide whether or not changing to morphine is in fact the best option for my pain management. It deals with the pain, it deals with the tummy upset, but what do I do with the GI trauma that lasts for 5 days post-use?? My system knows how to deal with The Moose, but wow, it so doesn’t know how to deal with the morphine in any way shape or form. I’m still trying to get my insides to stop cramping from the weekend.

I’ve already been on a regular regime of Metamucil for the last month, which has helped with the Moose, but the morphine totally threw me for a very unpleasant loop. I don’t even think there is a way of prepping my body for that kind of assault in the future if I wanna keep to using the morphine instead of the Moose :(

Seriously, no idea. Anyone out there have any suggestions??

I hope everyone else had a wonderful Thanksgiving with their friends and families.

Rheumy Appointment

I have to say, considering all the stress I put myself under regarding yesterday’s appointment — it turned out really well.

I don’t know if it was perhaps a whole host of things that made it so Rheumy II seemed really snippy at me when I saw her in December like the resident that spoke to me pre-appointment for 30+ minutes and thus totally backed up R2’s schedule (Hehe, see what I did there? *giggles*) which made me dread yesterday’s appointment, but it was really good. Albeit short and slightly awkward. I haven’t quite gotten a feel for her yet beyond the fact that she’s a super sweet, mostly soft-spoken lady.

She didn’t really ask me much and she didn’t really say much beyond asking me how I’ve been doing for the last six months, take a look at my joints when I mentioned that my knuckles really hurt at night. One interesting comment she made that made me feel a little awkward was that in Scleroderma, there is no such thing as “a flare”. So in her mind anything Fam Doc’s been saying for the last six months in terms of how I’ve been feeling seemed bogus to her. Still doesn’t explain why I’ve been feeling so exhausted, and icky all winter. I wonder if she remembered/forgot that I have the lupus-crossover version of SALLY, which might still redeem Fam Doc’s opinion of me having a mini-flare..?

She asked me if in regards to my pain, if I’d ever had muscle tests done in the past. The last set of blood work results she had on hand showed that my creatine kinase (CK) levels were elevated. From my recollection, my CK levels seem to hover high(ish), so this doesn’t ~really~ surprise me. What does surprise me is that the elevated levels could actually be pointing not just to my kidney issues (which is what everyone’s been generally using the results for), but that there may be muscle damage going on which could be the reason for my pain. OH. EM. GEE. People, you didn’t consider these things every time you stab me and I’ve been complaining about my pain??

If yesterday’s bloodwork shows that my CK levels are still elevated, I will get a call-back from R2 (hehehehe) and we can proceed with more in depth testing with an EMG which she said would only require them to apply a bunch of sticky electrodes in particular places to determine what’s going on. If those results so show positive, then we might have a possible treatment solution to help me with my pain. Her opinion was that as much as my doctors just say it’s pain from all my conditions, and there’s nothing we can do about it, sometimes muscle damage gets totally missed and in my case that may well be a possibility. Remember way back when I was still working and I couldn’t walk because of my leg pain was so severe and my old family doctor didn’t give a flying fuck? Yea, I wonder if any of my bloodwork from back then showed anything.

Anyhow, as interested as I am in possibly finding an explanation behind my pain, as usual I pessimistically have my doubts that anything will develop from all this. If something does come up, her recommended line of treatment is pretty easy, but I am far from thrilled from it: Cortisone. Steroids. I will blow up even more so than I already am and that really doesn’t make me happy. But looking at this realistically, like The Hubbs said, “If it can make it so you can be more active, do more stuff, be in less pain and take less drugs, isn’t that a good thing? Doesn’t that outweigh the shittiness of Moonface??” If I take the side effects out from the equation, yes it is a good thing that there could be a real solution to my pain. *sigh* :/

Other than the discussion about my pain, she asked me if I had ever consider being part of the CSRG registry. As to what the CSRG is, this is what they have posted to their website:

The group’s ultimate goal is to increase the capacity to perform research in Canada by creating a multidisciplinary, cross pillar team to perform high impact scleroderma research. They work with scientists from inside and outside the field of scleroderma (mainly rheumatologists, cardiologists, lung specialists, gastroenterologists, dermatologists, dentists, psychologists, and epidemiologists) and train new scientists in relevant scleroderma research. Currently, their main focus is to develop more sensitive classification criteria, create subsets of disease using, among other things, autoantibody profiles, and develop a disease activity index and a damage index. They also intend to engage in active knowledge transfer and exchange among the important stakeholders, namely the scientific and lay communities and the policy makers.

All that was required of me was to submit two blood samples and fill out the questionnaire package that’s sitting on my desk. Once a year, I will see R2 to be assessed specifically for the CRSG (though she’s decided that she’ll just do both my now-annual appointment with the CSRG stuff)and submit a repeat questionnaire package. There are also other tests which they need to do like an annual Echo, PFTs, etc etc.. but since I already do those things with Hawt Doc, R2 has decided that she’s will just take the results of those tests everytime he orders them so as to not confuse things.

So yea, that was yesterday in a long-winded nutshell.

Today, I get to see Sinus Guy and hopefully the power won’t go out this time.

Short post

Two things I will elaborate on further in the morning with respects to my appointment with Rheumy this afternoon:
1) CSRG – Canadian Scleroderma Research Group
2) Blood work + EMG = doing a blood test to see if my muscles are in need of some help, if the results are showing high, we’ll do an EMG to do more difinitive muscle testing and if those show positive there’s a possibility of lessening my pain by Rheumy(!!), though I’m not really liking the treatment option *sigh* Can you say “moon face”? Yeah. Steroids.

Anyhow, I’ll write more about it in the morning. I’m gonna head back to bed.

Side note: For some reason I couldn’t spell “muscles”. I kept spelling it “mussels”… seafood on the brain much? ;)

*sigh*

So I saw Fam Doc yesterday afternoon.

Looks like he’s kind of at a loss as to what we should be doing for my pain. He did his research and he tried to come up with a good solution, but he just didn’t know what the best course of action was. He kind of wanted to steer us away from the continuous use of narcotics, but couldn’t find a good fit. He’s going to a pain conference at the end of the month and is going to present my case to the Bigwigs of Pain Management field and see what ideas they can come up with during the Q&A session.

I’m a little disappointed, to say the least.

In the meantime, he gave me some samples of Ultram to try. According to his records, we gave this drug a go a few years ago when it was under another name and formulation — Tramacet. It didn’t work then and it didn’t work last night. I took one pill and lay around in my misery for awhile before I gave in and took two of the new Moose (new as in new doseage: 8mg tabs instead of 4mg). I didn’t get a headache with that combo so I’m kind of wondering if perhaps I take 1 Moose + 1 Ultram, would that be a solid, if temporary, solution?

I’m sad. I don’t like the pain and I certainly don’t like having to take stuff for my pain and this seems to be the only thing that’s a recurring theme in my life. He did mention that I look kind of off yesterday — redder than usual and puffier :( and so he thinks I may be either still flaring or starting a new one.

The Happy Sponge

I wrote a reply email last night to a girlfriend about a blog post from Honey & Ollie she had forwarded on to me which talked about a few things which ring true — chronic pain.

I thought I might post my reply here just because it is food for thought and I really should be making note of what pain does to me just so I will have a record of it ~somewhere~:

She hit on a lot of things I am familiar with and I have to admit, I have difficulties with gratitude. Which to be honest, makes me feel like a bad person. I am grateful for a lot of things… big things.. the easy things that people can be grateful for. It’s the lessons which I am supposed to be able to identify in the face of adversity that I have difficulties with.

I am loving the notebook I got for my birthday – but I am hesitant of marring its wonderfully blank pages. I have issues like that. I have been trying to decide on what to do with the book. I love notebooks… and paper… I just never know what to do with them. I would love to use it as some kind of journal, but a) I suck at drawing b) I suck at writing c) I really don’t like writing about my feelings (+’ve or –‘ve).

Perhaps I should use it as a journal to write and doodle about things that I am grateful for? At the risk of sounding like a cliché, perhaps I should make it a journal that holds all the things that make me happy so I can look at it on days that are less than stellar… then I could put in all those fun pictures I’ve been given that were drawn in sharpie… like the chubby pink llama. I like the chubby pink llama.. even though he’s kina sad about being all chubby… now I wish my printer was working properly, then I could print the chubby pink llama and put him in my journal. Hmmm… things to think about.

Pain does suck. It’s a hard thing to accept and I still don’t think I’ve done come to that point. I have great difficulties in seeing the tiny little “happy sponge” in the face of the big rhinocerosaurus rearing its ugly head, demanding for attention. (yes, I just made up an animal) The Hubbs keeps trying to get me to see that little itty bitty teeny tiny happy sponge and it just doesn’t happen. He points it out… maybe it’s easier to point it out to someone, from the outside, than it is to find it yourself. I don’t know. It’s just such a huge letdown to have days where I crash and burn following a day filled with awesome… or even only a few hours of awesome followed by c&b. The problem is that my brain doesn’t know how to remember the awesome happy sponge.

I should probably make that a mantra: Find the Happy Sponge.

Sounds kind of kinky, actually ;)

Maybe that’s what I shall do in the morning… Doodle in the notebook as I wait for the treadmill people to come install the Speedy.