New Treatment Update.

Sooo… I met with the new Doc who will be overseeing my new treatment and I guess she will kimd of be working in tandem with FamDoc for my chronic pain care. She was super awesome & friendly.

To put it mildly, she was rather surprised at the monster combination of Sally & Co. and I have a follow-up in 2 months. She is confident that I will definitely get benefit from using Medical Cannabis and seems to be pretty hopeful that we’ll be able to slowly wean me off my current pain meds over time; it’ll be a ridiculously slow go, but she thinks it can be done. In fact, she said if I wanted to, I could try to start reducing it by a tiny little bit as I am working out the kinks of what works best for me with the MMJ (medical marijuana).

Since I don’t have the option to smoke, she’s hoping I will experiment with all the different options currently available: oils, tinctures, commercially made medibles, and if I am feeling brave enough to make my own cannabutter/oil, I can try different strains to see what works best for my pain over the next couple months and have some positive things to report back at my follow up.

Interestingly, while I was waiting for this appointment, an article from Scleroderma News popped up in one of my social media feeds: New Cannabinoid-based Drug Slows Fibrosis, Blocks Inflammation in Early Scleroderma Study.

Seeing as this is almost 8 hours later, The Dude was supposed to be doing all the provider signup for me and said I should be able to order stuff by the time I got home, except there was a voicemail message saying that he forgot to ask me for my mailing address to complete the application process. *Sigh* I really wish I could have started looking at stuff and put in an order tonight. I doubt the application kerfuffle will be rectified before the end of the weekend :P

Curiously, I don’t know if what I’ve been prescribed is considered “a lot” in the scheme of things, as I don’t even know the dose. The Dude had all my prescription information when he walked me down to the pharmacy to tell me about how I would order everything from my chosen provider. He did seem a bit surprised to read the scrip.

Once I get my signup information email, he recommended that I talk to the provider regarding compassionate pricing which would make things a little easier to manage, financially. Other than that, I am toying with the idea of getting a Magical Butter Machine so that if I decide to make that leap of making my own ‘medibles’, the MB2e may be a less stinky way of going about it. TheHubbs dispises the smell and to be honest, so do I.

So: Let the fun begin.

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New treatment coming in the New Year

So a few weeks back, I had seen Rheumy III and we were discussing the ‘magical miracle drug’. By now, all the doctors that needed to be informed about the treatment have likely been contacted and we’re slowly moving forward. The only doctor we’ve not yet heard from, unsurprisingly, is Cow Stamp Doc.

Earlier this week I had a follow up with Hawt Doc and we talked in a little more detail about what treatment(s) Rheumy III is toying with: IVIG or Rituximab. He doesn’t seem to have any preference one way or the other, but he did make very clear that whichever treatment she chooses, he is going to want to go back to seeing me on a very, very, regular basis again to keep a close eye on my lungs. He wanted me to be very clear that we have almost no wiggle room for me getting sick because I have both Interstitial Lung Disease & Pulmonary Arterial Hypertension working in tandem to make life more complicated when it comes to infections.

Seeing as we’re basically on the latter half of October, Hawt Doc doesn’t seem to think that we’d be starting treatments until the New Year, when my next appointment with Rheumy III occurs. It ~could~ start before then, but he doesn’t see any real rush to begin, especially since I’m still dealing with this cold-not-really-a-cold-or-virus thingy that I’ve been trying to fight off since my visit with him last month. It’s been an on-again-off-again fight where I’m trying to get over something, but it never really manifests into anything (thank goodness!). With all the fighting off of infections, it means I am just so dead tired all the time and it’s a frustrating vicious circle of ‘fight off potentially non-existent infection, feel a bit better, be thoroughly exhausted from trying to fight off whatever’s being a pain the ass’ then wash, rinse, repeat. So until that point where I STOP feeling like I’m coming down with something, he doesn’t want to put my body under any more stress than it needs to be.

As an aside, we did discuss how the whole treatment would be happening and it turns out both IVIG & Rituximab involve hospital outpatient IV infusion dosing.

Blurrgh.. Hospitals.. Blurghh… IVs… Blurgghh.. Blurrggh… Blurrghh…

Knowing that, I dunno if I actually signed up for this ride -_-;;;

No, that’s not true.

I did sign up for this and am, to some degree, kind of looking forward to the notion of making my Quality of Life better (I do hate those words), not to mention potentially reducing my pain issues, reducing the need for steroids and getting rid of the Moon Face, etc etc etc…

So yeah. For now, that’s all the information I have until:

A) I see Hawt Doc again

B) I see Rheumy III again

C) I see Cow Stamp Doc for the first time in YEARS.

Rheumy III appointment update

Rheumy III just prescribed for me to go shoe shopping for new shoes, 2 pairs in fact(indoor & outdoor), AND wants me to wear my sexay boots more often! Admittedly the prescription was for Birkenstocks or something similar, which is questionably attractive & fashionable depending on your tastes, but still…! Shoe shopping prescription! With the potential for Insurance to cover them! I am no longer allowed to wear flat, fugly, orthopaedic shoes with orthotics anymore! Apparently I have arthritis in my feet (news to me!) so Rheumy wants me to be wearing something with a slight heel on it because it will stop my ankles from rolling inwards so much.

She is not pleased that I am so moon-faced and is rather displeased that Cow-stamp Doc hasn’t looked into fixing the issue, as she thinks I am on way too high a dose of steroids for what my combined conditions requires.

Not only that, but apparently there is a new(?) “magic-miracle drug” which may be highly beneficial for pretty much ALL my current inflammatory conditions that she would like for us to give a whirl, as long as it has the approval of Hawt Doc, Kidney Guy and one other set of docs, which I need to have a consult with. I think she might even be considering the idea of bumping up my Imuran doseage, but I’m a little fuzzy as to why at the moment.

She also wants me to have a consult with a new doctor, but I’m blanking on which department they are and what they do. I think it’s for muscles because she’s concerned about my muscle enzymes being so high and they would need to assess whether or not the “magic meds” would help in my case.

There’s also bone density testing in my future which again, I’m fuzzy on the reasoning, but since she wants as much information on me as she can get her hands on, I’m a-okay with it, as much of a nuissance as testing can be :P

This has only been my second appointment with her and already she is of the opinion that if there’s nothing acute happening, it’s not kosher to just sit back & keep with the status quo in regards to SALLY. She has a genuine interest in trying to improve my quality of life as best she can with all the resources available to her and that blows me away.

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.

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.

CowStamp Doc Visit

Today was the first time I’ve seen CowStamp Doc in years.

Just as a quick refresher: Before we left on our trip to Alaska (more on that in a separate post), I started spotting/having a light period. Nothing crazy heavy, but it was still annoying and rather disconcerting. It’s been probably something like 7+ years since I’ve had to deal with that sort of thing and I had noticed that the spotting started a few months ago.

As far as CowStamp Doc is concerned, having a period is perfectly normal. ¬_¬ Except, in my opinion, having a period is totally not normal for me!

As he describes it, by taking the estrogen and progesterone separately, they basically balance things out so that I don’t have a period, but every now and then it’s possible that one will overthrow the other in their daily battles for dominance which will cause me to spot or have a period, which is why this is totally a-okay normal. As far as dosing goes: normally the Provera & Prometrium (I will be going back to the Premarin as soon as I finish off the pills I have left, thank goodness) would balance each other out perfectly fine, but he figures that because of the awesome new friend that my left ovary has, the tumour, it’s probably adding a little bit of extra hormones to the party which is why things are slightly unbalanced and causing the spotting.

As far as the tumour is concerned, just like Fam Doc, he’s totally not concerned by it. I find it kind of strange how Liver Guy is the only person who’s freaked out by it and is the one who made the moves to put in the requisition for the Gynae appointment.

So that’s that. Cowstamp Doc has no need/desire to see me unless something is wrong and is quite content to just refill my prescriptions annually by phone/fax with the pharmacy. Works for me, too, to be honest.

HAPPY DAY!!!

NO CELLCEPT!!! :D

So. The followup in regards to my appointment that I had this afternoon with Rheumy & Dr.F — who is now going to be nicknamed Dr.Cute, cuz she is rather sweet & cute looking, has resulted in no cellcept.

I am actually really, really, really thrilled by this news.

Back when we were discussing the possibility of the Cellcept during the fall(?) of last year, I was wanting to get on with it as soon as possible so as to get on with moving forward. But as time ticked on by and it took forever for things to be approved, I actually sat down and thought long & hard about the side effects of the Cellcept and started feeling less and less enthusiastic about taking it.

Now that I’ve had my appointment today, I am feeling immensely relieved and rather ecstatic. Dr.Cute wanted to get up to speed with the abridged version of SALLY and after talking to her about what’s going on, how I’m feeling, doing multiple tests this afternoon at her request, it would appear that we still can’t figure out what’s going on, as usual. At least from her pespective it’s definitely not the interstitial lung disease or an increase of scarring that’s causing me all the tiredness and shortness of breath. With those particular thoughts in mind, she doesn’t think that we should put me onto the Cellcept when it’s not going to be of any benefit to me and the side effects will just make me miserable.

With all that out of the way, she wants to know for sure what’s causing my exhaustion and shortness of breath. She definitely wants to do more testing: I have an Echo booked in 2 weeks time. Depending on the Echo results and how Dr.Cute feels about it, she may or may not pass me back to Hawt Doc’s Pulmonary Hypertension cohorts, which is his specialty. Depending on the PH team’s decision, they may opt to do another Right Heart Catheterization to see if the PH is worsening and that may be the answer to my problems.

On the other hand, there is also another possibility: she doesn’t think I am using my oxygen enough. What? Really?? Ya. Rly. I generally use my oxygen only when I’m out and about. I rarely use it at home except for at night, but after walking around the clinic this afternoon with an O2 sat monitor taped to my forehead, we’ve discovered that my levels dip down to 82% without wearing my oxygen. With that discovery in hand, Dr.Cute wants me to change the way in which I use the oxygen: She wants me to wear it 24 hours a day. Obviously if I’m just hanging out sitting in front of Ponyo, I don’t need to wear it. But if I get up to pee, or grab a drink from the fridge, or make myself a snack, or feed the cats, she wants me to wear it. It doesn’t matter that it’s only two steps away from where I am sitting, my oxygen levels drop considerably with those small bursts of activity and that little bit can contribute to my tiredness and exhaustion.

Seeing as I’ve gained about 20lbs since starting the Imuran, there’s a possibility that I’ve developed sleep apnea. Since I am wearing my oxygen primarily at night, and I usually feel better with it on after I get up to go to the bathroom all the time, that is easily remedied and drug-free. The only thing we’d have to do, is yes, more testing — basically another sleep study.

Since Mom & Dad were with me this afternoon, Dad asked if there was any chance that with the new test results, if the government might now cover my oxygen. Dr.Cute was surprised that no one had considered booking me in for the testing that would be required to determine my eligeabilty for government-paid oxygen. I’ve said this time and again, unfortunately I’m not suffocating enough to covered and she said that as of this past week, the government body that oversees the oxygen thing finally announced changes which would make getting oxygen easier for patients that need it. SO, that means that I might finally be getting my oxygen covered! Hurray!

So that’s what’s going on… no cellcept, lots of oxygen, even more testing and maybe get to have my oxygen more affordably ^_^

Being a sad llama…

So I originally started this week as being completely and utterly appointment free — yay me!

These appointment-free weeks generally seem to fall few and far between… well, maybe not in actuality if you look at my daytimer, but in my head it certainly feels like it.

Last week was the beginning of the onslaught — The receptionist from Liver Guy’s clinic finally called back and booked me the liver biopsy (Monday 12 March 2012) and then informed me of the bloodwork that I would have to repeat (Thursday 07 March 2012). Then Rheumy called to inform me that she hadn’t forgotten about contacting me, she had just been trying to get a hold of Hawt Doc but failing miserably because he is currently on Maternity Leave and will be out of office until May, which she was not aware of until she tried to get a hold of him.

Since we got the official go ahead from Manulife that they will be covering the Cellcept for a year, she doesn’t want to be waiting until his return to begin treatment and wanted to know if he would be okay with me seeing one of his cohorts until his return. The doctor she wants to have me see (currently named Dr.F until I meet her and give her a nickname) actually runs an Interstitial Lung Disease Clinic with Rheumy. So with that, I got a call on Tuesday from Hawt Doc’s office saying that they booked me in to see Rheumy & Dr.F for Friday.

So. Friday, 09 March 2012, check-in at 1155am and then we run the usual whole gamut of baseline testing and then 100pm I meet with Rheumy & Dr.F to discuss the Cellcept.

o\~…Oh what fun it is to ride in a one horse open sleigh…~/o

*ahem*

So yea. That’s what my end of the week/beginning of next is shaping up to be.

Friday my parents are going to take me to the PLC for my appointments, which will be alright for the most part I think, except for the fact that I can probably guarantee that Rheumy will not take too well to my mother and her inability to comprehend medical information. She will more than likely want information repeated and possibly explained several times in an attempt to understand what the plans are for the Cellcept. I see annoyance in my future for Friday…

Monday I am actually most concerned and kind of feeling llama-esque about — The Hubbs isn’t going to be going with me to the biopsy and I’m having kind of a tough time with that. Brit-SIL offered to take me and I took her up on the offer, but I’m actually scared out of the bejeezus about The Hubbs not being with me for the biopsy appointment. He will, on the other hand, be working from home so that when I get dropped back off afterwards, he’ll be there to take care of me. It’s going to be a really long day. Check-in is at 730am, biopsy is at 800am and then I will remain at the FMC for a minimum of 5 hours post-procedure.

Maybe it’s selfish of me to want him to be with me at the hospital for those five hours plus homecare and using up a vacation day, but I am so used to him being there when I have to deal with scary things like biopsies that I’m really not happy about it. But don’t tell him… What I am rather worried about is how I am going to react emotionally before, during & after the biopsy and I dunno that Brit-SIL will really want to have to experience that sort of thing first-hand. She is not a touchy-feely sort of person and I think I get kinda clingy when stuff like unknown testing occurs.

I really should just pull my big girl panties back up properly and deal.

*sigh*

Woohoo… I think…

Manulife agreed to cover the Cellcept!!

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

Now it means that I’m going to be going through a few months of re-acquainting myself with new immunosuppressants. Damnit.

Double edged-sword, much? O_O;;;

*sigh*
There was a bunch of other stuff that I’ve been wanting to post about for the last couple of weeks, mainly food-related, but I’ve been feeling absolutely wretched and awful and so haven’t exactly been feeling up to posting stuff.

A couple of things that I’ve been wanting to write about, which I may still do at a later date:

* Homemade garlic sausages with tomato sauce-poached eggs
* Homemade garlic naan

Scope is done.

Well another scope down and I am still in one piece.

Everything went swimmingly with Wednesday’s GI scope and for some reason it feels like it was three days ago. Strange.

GI Guy said that everything’s looking fantastic, there are no problems whatsoever, there was no food left in my stomach after 12 hours which was awesome and like everyone else keeps telling me: Keep doing whatever it is I’m doing and I’ll see him again in 3-4 months time.

*sigh*

On the one hand, that’s fantastic — no one ever wants to be told that "they found something" or "they need to run more tests". That line of thinking generally leads to rather dark & scary places in my head which I care not to relive if at all possible. But on the other hand, it means that I have to continue suffering with the pain and discomfort that I’m having to deal with on a generally regular, if not daily basis and this troubles me.

I’ve gotten around the problem of getting food down into my stomach by drinking larger than normal quantities of fluids so they don’t get stuck in my esophagus or halfway down. The problem after consuming so much fluids usually involves being overfull and having to purge myself of the excess liquids after I’ve eaten, which sometimes results occassionally in partial bits of my meal coming up at the same time. This is a pretty normal procedure for me and so I don’t think much of it for the most part unless I have the days where I projectile vomit absolutely everything I’ve eaten — that is somewhat problematic because by that point, I have no desire to eat anything at all anymore and I’ll eventually end up with low blood sugar because all I’ve eaten has been lost. We’re still working on figuring out how to get something back into my system when I’ve had a bad eating day.

As disturbing as that whole eating business is, the most frustrating and painful GI issues I’ve been dealing actually has more to do with The Moose than anything else. Lately, everytime I take a dose of The Moose, I end up with incredible stomach pains unless I eat or drink something with the medication. I don’t really know how to get around this problem and usually when I’m in pain eating isn’t exactly the highest activity on my priority list — how is it that something that’s supposed to help relieve me of my pain causes me so much pain that I actually consider not taking it? This is really hard and GI Guy’s answer unfortunately was that he’s not surprised that I’m having problems with it at this point, but to just… try to grin and bear it.

I guess there can always be worse things he could tell me.

The only other news he had was that he’s still waiting to see what the new medication that we discussed last year is like. He has yet to see it and is still crossing his fingers that it will be of benefit to me if he can get his hands on it. I can’t remember the name and only vaguely know what it does — I think it’s supposed to move food through your system even faster than the Champagne meds (domperidone, funnily enough, sounds like Dom Perignon) do.

So that’s what’s going on with GI Guy.

… Onwards, then …

In other news, this year I am finally getting my chance to sign up with a CSA! I’ve finally looked into it early enough in the year that there are still some farms that have CSA shares available!

After a bit of kerfuffle-age, I am hopefully going to be getting a Noble Farms CSA share this year. I should mention that I really, really should have taken the post-operative instructions from yesterday more seriously. Especially the note about not doing anything which involves important financial transactions, driving and anything else which might require proper attention to detail and safety for the next 24 hours.

Fingers crossed that Noble Farms will get back to me tomorrow saying that there’s a spot for us to purchase a half-share in their CSA program and if not, I will be mighty sad. I am also kind of hoping that the CSA will also give me the opportunity to buy some other fantastic products from other vendors at the Hillhurst-Sunnyside Farmer’s Market this year when we do our weekly veggie pick-up. I am really wanting to buy farm fresh eggs from a local producer — yes, they are kind of expensive, but it would be so worth it when it comes to eating. I will probably continue to use regular store bought eggs for baking, but for eating, my goal is to be able to have farm eggs.

*Really hoping for a CSA share this year*