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.


Liver is A-OKay! Sorta…

Saw Liver Guy this morning to go over the results of the liver biopsy.

Turns out my liver has a little bit of inflammation, but an incredibly high fatty disposition: like 2/3 of the cells are filled with fat. Awesome.


Nothing can be done about it other than diet & exercise, and even then, because of SALLY, the lupus and all the other things I’ve got going on for me, that is a rather difficult proposition, according to him. Which is kind of nice — he actually recognizes that exercise isn’t an easy request given my health conditions.

So he doesn’t see any need to see me again. As an aside, he has a colleague who’s doing a study on patients with livers which have a high fatty disposition & relatively little inflammation. She’s wanting to see if probiotics will help with lowering the fattiness in the liver…? I dunno. Whatever, he’s going to forward my file onto her to see if it would be of any benefit to her study. If it is, great, if not, whatever. Studies are rather interesting.

Interestingly enough, my liver isn’t actually even the thing that’s concerning Liver Guy.

It’s my left ovary.

They discovered that there’s a 10cm mass hanging out on my left ovary.

“HUH???”, you say.

Ya. 10cm mass on any organ is not normal and so he’s sending off a referral for me to see a gynaecologist as soon as possible. He figures that it will more than likely need to be removed.

Since he already has the results of the biopsy which shows the mass, he’s hoping that I can get referred to seeing someone sooner rather than later, but we’ll see. I dunno what to think or say. I’m kind of indifferent about it at the moment to be honest.

Well that didn’t go quite as planned…

Yesterday was my liver biopsy and I ended up staying pretty much the full day at the hospital due to some unforseen complications…

What seemed like a run of the mill liver biopsy turned into a rather painful post-op recovery. What they think might have happened was they could have nicked the diaphragm a wee tiny bit, which put it into angry spasms once the local anaesthetic wore off. They were originally worried that I had a bleed somewhere going on in my liver from the biopsy. They sent me for X-Rays, repeat Ultrasounds and finally CT Scan because they couldn’t see anything clearly. Thankfully everything came out clean in the end and normal looking… except for the unexpected discovery of a dermoid cyst in my pelvis which showed up in the CT. According to the resident who finally discharged me, he said that there weren’t any concerns about the cyst, but Liver Guy will talk to me about it when he gets the results of the biopsy and if he feels it’s necessary, will order more tests for the cyst, but otherwise it’s not a concern.

Thinking about it in hindsight, even though Brit-SIL was an awesome rock and companion during the whole day, I am feeling supremely guilty. Mainly for taking up her entire day, of which we were both only expecting to be at the hospital for the usual “5 hours minimum”, but also because I just realized now that the entire afternoon that we were dealing with the scariness of my post-op problems, it may have totally kicked her anxiety into high gear and completely terrified her. Gah… I feel like an idiot for not taking that into consideration before asking her to take me :(


Anyhow, the biopsy itself went pretty much as planned, but as I mentioned, the post-op didn’t go so great. Since my pain was getting worse every time I inhaled, they wanted me to do X-Rays and an Ultrasound before giving me the a-okay for discharge to go home. The twitching I was experiencing every time I inhaled was considered mild post-op only because I still had local anaesthetic keeping everything mostly numb. Once the anaesthetic wore off, the twitching became full body spasms that went from just below my ribs, right up the side of my neck & shoulder on my right side, to the point of putting me in a fetal position between each spasm. I feel badly. I pretty much terrified the really nice lady that had done my liver scans pre-biopsy that same afternoon as well as the entire ultrasound department that she had to call for help during my… shall I call, “episode”. I think what happened was that once I was out of sight & earshot of Brit-SIL, and once I realized I was plunked down in Ultrasound again, when I really should have been perfectly fine to go home as planned, my body went into epic proportions of scary pain — for myself, as well as the observer.

The thing that gets me the most from the whole day is the continual questioning of my Moose useage. I don’t know why, but every single doctor, and every single nurse would ask me the same questions over and over again specifically about my regular pain and The Moose. They seemed to be under the impression that because I have chronic pain, and I use the Moose regularly for break-through, I would be more susceptible to experience minor pain as major… except… when your lung function is already compromised and not up to speed, and every time I inhale my entire right side would twitch, I can’t imagine that would be considered normal even for a normal person.


I am home, the evening passed mostly uneventfully except for when The Hubbs put me to bed and I had another minor spasm episode (compared to the first hospital episode, that is). Today my side still tweaks every time I try to take a deep breath, but hopefully that will resolve itself over the next couple of days and I’m not in pain, but I am tired and I think I need to go back to bed.


Sad llama is sad…

Today was my appointment with the Liver Guy.

I can’t even remember the last time I saw him — a year ago? two years? no idea, whatsoever.

I suppose I could actually look it up, it’s not like it would take much, but I am feeling too poopy to do the work. I was actually feeling okay for the most part, but then just before I left the clinic, my mood and feelings just bombed.

There wasn’t really much to talk about with the Liver Guy — my liver’s current disposition is kind of scarred and we know it. Well, sorta. I think it’d be more accurately be described as fibrotic, in part due to SALLY but more so because of my lifelong corticosteroid use from the pan-hypopituitarism. In the past it’s been referred to as having a fatty disposition; a term that The Hubbs actually thinks is kinda cute, if you can imagine your liver being cute in a chubby sort of way… everything sounds cuter if you call it <i>chubby</i>.

He asked me how things are going and to be honest, I’m feeling crummy. I’m tired all the time and feeling generally… well… crummy.

Crummy, crummy, crumtastically crummy.

In terms of making my liver happy or at least keeping it in as healthy a state as possible, it all boils down to diet and exercise. There’s absolutely nothing new there. We’ve discussed doing a liver biopsy at previous appointments to see how severe the damage has been by both Hawt Doc & the Liver Guy and generally they’ve opted for holding off on the invasive procedure. Today’s appointment was rather new & nifty: he had me do a Fibroscan. The cool thing about the Fibroscan is the results of the test are immediate — if the scan showed that the fibrosis isn’t too bad, then we’d forgo the biopsy, if the fibrosis shows high, well then biopsy it is.

Well, it turns out I am going to be getting a biopsy. The results of the Fibroscan showed high even for a liver with a fatty disposition. I have to do bit of bloodwork before we go ahead with anything to see that I don’t have any weird problems with clotting but otherwise, once the bloodwork is complete, I’ll be scheduled in for the biopsy within two weeks after that. At least with having the biopsy done we’ll get more detailed information of what is happening with my liver and should there be something else going on, at least the biopsy will determine what kind of treatment we should be proceeding with from that point forward.

More tests, more biopsies, and more stabbity stabbyness.



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.


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*


Change of Plans…

So, I had an appointment with Sinus Guy this week and he scoped me. Owieness.

I don’t think there was any intention on scoping me to begin with, but he asked me how I was doing and I told him about the whole EMG thing and muscle testing and said to him, "So yea, that’s what’s new, but not that it has anything at all to do with my ears, nose or throat." He was amused, I think… as usual. He’s moved offices again and now he’s way hell and gone on the freakin’ other side of the city.

I’ll be going back for a follow-up visit next Monday because it would appear that the intense pain I was having in my right sinus that gave me absolutely horrific pain in my teeth on Saturday has shown that I have something going on. It hasn’t gone into full-blown infection mode, but there is a chance that it’s a virus or bacterial infection that hasn’t come into fruition. Only treatment for the moment that he’s requested that I try is flushing out my sinuses morning & night with the usual saline rinse and then giving myself two squirts of a decongestant to see if that helps clears stuff up.

So far… no luck. It gave me incredible pain again tonight after dindin and I was just wanting to stab myself in the teeth I was in so much pain. I did, sort of do that in the end — I have these pre-strung(?) dental floss picks with a pointy end that can be used as a dental pick and basically jammed that in between my teeth and it helped relieve some of the pain, surprisingly. But other than that, I flushed my sinuses twice tonight I was so owie and then squirted myself twice in each nostril with Otrivin. I don’t know if next Monday can come soon enough at this rate :(

When I got home from my appointment yesterday, I got a call from GI Guy — turns out there was a scope cancellation for Wednesday and they wanted to know if I wanted to bump up my scope to tomorrow. This is actually kind of a good thing because my stomach has been pretty upset the last few months and really, really owie everytime I bolster myself up with a dose of The Moose :/ Unfortunately the appointment isn’t until 1215pm, so I will be having nothing but clear fluids & a clear breakfast from midnight tonight until 10am tomorrow, and nothing between 10am and my scope. That part will suck something huge. They’re probably also going to be stabbing me with an IV to inject me with a sedative prior to the scope, which means I will have to ask very, very nicely if the nurse who will be stabbing me will grant me the wish of putting the IV in a rather unconventional vein because of SALLY’s uncooperativeness with most needles. Speaking of needles, I had my bloodwork yesterday morning and damnit, the tech blew both my veins. It wasn’t intentional, but something just wasn’t working and now I have two bruises from blood draws on top of the bruise I have from the muscle testing last week -_-;;;

Other than that, I got yet another phone call this afternoon while I was out picking up my Viagra from the PLC from Rheumy II’s office asking if I had received any word from the insurance company on whether or not they are going to cover the Cellcept. Thusfar, no word or communications of any sort.

On a much cheerier note, I made a decision last week Friday after my weekly visit with Miss R and Lil’Miss E=MC^2 to spend a little bit of money to make our house a little more kidlet friendly.

Now that the Little’Uns are more aware of their surroundings, I assume that they will probably be interested in toys soon enough and having places for them to sit will be most helpful. After attempting to put Lil’E=MC^2 in a seated position, but realizing that she’s still not 100% strong enough to keep herself upright, we originally tried strapping her with her back against a kitchen chair and tucking on either side of her a small pillow or stuffed animal to try and keep her vertical, but she still ended up listing sideways from lack of strength. After lunch, we talked about what we could possibly do keep her at the table with us whilst eating lunch, but making it slightly more comfortable for her until she’s strong enough to sit up on her own in a proper high chair and Miss R mentioned that she had a Bumbo Chair at home that she could bring along on visits, she’s just waiting for J to give it a good thorough high powered hosedown since their’s is pretty dirty from its previous owner’s kids (J‘s niece & nephew).

After we talked about the Bumbo Chair, I thought about other things that Lil’E=MC^2 and D&K’s Baby D might need in the future if they’re going to stay an important part of our lives and mentioned to The Hubbs that I would like to buy a few things for the babies to make their time at our house a kid-friendlier place. I’m not going to go and spend oodles and oodles of money on tons and tons of toys — a brand new Bumbo is $75! But instead, I know that The Hubbs’ nieces and nephew are just the right age to have already started outgrowing some of their stuff and The Hubbs’ sister has more than happily offered to pass along some of their stuff to us for the wee ones to enjoy while they’re at our house. This is pretty awesome and to top it all off, I found a second hand Bumbo for only $30 and it included a table, to boot! I am super thrilled with this purchase for some reason and can’t wait to give it a go with either Lil’E or Baby D on Friday when we get together with all the girls for our monthly craft day.

Just this little act of getting a baby chair makes me incredibly happy because as I realized last night: Little E=MC^2 is the daughter that we will never have and she is giving us the opportunity, in a small capacity, to be the new parents we will never get to be. So little things, like buying baby furniture for our house and baby toys, is a wonderful heart-warming experience.


Same ol’ Same ol’ with GI Guy.

Meaning: There are no other meds he could give me which would help with my conditions, and there’s a safety factor involved with prescribing anything else.

There’s a new drug in the states that is being prescribed for constipation and there’s a chance that it might help with my stomach issues — it could help move things through my system faster, which is alway a good thing. The possible new medication might be coming to the Canadian market soon, but he’s gonna check it out in November at a conference(?). By the time I see him in March for my scopey-scope, it may have made it up North, but in the meantime just go about my normal everyday business. :P~

I just rememberd that I forgot to mention to GI Guy that I am starting a new medication tonight. It would seem that there’s been a North American shortage of one of my medications for the last year and it’s finally come to the point where my pharmacy can’t even scrounge around for an alternative doseage of the medication or even a generic brand. I’ve been waiting a week and a half to hear from Endo Doc for a prescription that we can use instead and The Hubbs finally managed to bring it home yesterday. As of tonight I will be starting Prometrium… and they look like fish balls.. LOL. 200mg of Prometrium seems like a large dose for some reason compared to all my other medications o_O;; Wish me luck on this one, the side effects are a little disturbing compared to my old meds.

Other than that, my morning was actually kind of nice. Not that my morning was poor, by any means, but I certainly wasn’t feeling the greatest when I got to the office — there was a bit of nausea going on for some reason.

Before booting it over to see GI Guy, I had made a quick pitstop at my old work to drop off a bag of pickles for a friend. The short’n’quick visit was nice. It probably would have been nicer had I been able to catch up for a few minutes longer, but I had my appointment to go to still. I just hope the pickles are enjoyed over the next few months. ^_^

I figured I ought to rotate through my pickles before this weekend and gifting them to someone “new” is always kind of fun. Tomorrow I’m heading back to the market with a girlfriend and I’m hoping to pick up a few flats of tomatoes as well as a whole bunch more jalapenos. I intend to try preserving the shwack of tomatoes in the form of sauce and perhaps just whole in my pressure canner. That and I am also hoping to pickle at least another pound or so of jalapenos after only coming out with 1.5 jars-worth over the weekend, which was a might bit disappointing after all the effort (not that it was a lot of effort, as I had mentioned).

Tomorrow will definitely be a long and busy bee day! Market in the am and then games & dinner in the pm with J & Miss Rwith the hopes that we might also get a crack on starting the brine for homemade corned beef! :D


I’m obviously not asleep…

Sooo… it’s getting to be about that time.

Next week I’ll be spending three days, back and forth, at the hospital participating in that PAH study I mentioned a few months back. Somehow time just flew right by. I shouldn’t be surprised, but it did come up on me faster than I anticipated.

Am I worried? Not terribly. My parents still aren’t thrilled, particularly Mom, but there’s nothing that I can say that would really make anyone understand.

Mom made rather silly comment on Monday when I was over for breakfast after my monthly lab work, “Do you really want to be a guinea pig?”

My reply to that was, “I’ve been a guinea pig since the day I was born. That’s a rather silly question, don’t you think?”

It took her awhile to digest that comment and I’m pretty sure Dad knew what I was getting at.

So tomorrow (today) is a very belated monthly visit to see Family Doc. There’s a ton I wanna have him fix, but I know the likelihood of any of it panning out is prolly nil. Pain issues need some serious addressing, insurance papers need to be returned and hopefully have been filled out, eating issues are frustrating me to death, my lungs are all crackly at night and of course there’s always discussion about next week.

The upside of tomorrow (not that I’ve noticed there ever being a downside to seeing Family Doc) is that we’re headed to Banff for Pasta Buffet night at the Rimrock Hotel with friends. I can’t believe we’ve been going without fail every year for the last…. Oh God, I don’t even know how many years it’s been anymore. It’s just that awesome. The annual “let’s see who can garlic themselves out first” is always great fun. The only disappointment is that I can’t eat as much as I’d like. Puking will probably be inevitable. *sigh*

Next week will be rather hellish:

* Tuesday is the interview with the Rheumatologist
* Wednesday is PFTs + Bloodwork (and more bloodwork on top of THAT bloodwork) and Chest X-rays(?)
* Thursday is ultrasound and then I hang around twiddling my thumbs until the actual procedure is done, which I’m told is scheduled around noon.

Lots of toys will be brought on Thursday to keep The Hubbs entertained (distracted?) during the whole period we’re there.

So yea, that’s the lowdown for the next week.

(Total unrelated side thought: We put up our brand spankin’ new Christmas lights up on the pillar outside the front door on the weekend. They’re awesome. They’re either going to cause someone to have a seizure OR it’ll encourage martians to stop by and say hi with all the insane blinkiness. Srsly.)


Just got a call from Research Study Nurse…


Seriously. Wow.

I have an insane week coming up the week of November 30th.

I can’t believe this, but time has just flown by and I am 2 weeks away from officially participating in the PAH study. I didn’t think December would get here so quickly, but it has.

Dec 01 @ 100pm — visit with The Study’s Rheumatologist and do an “interview” with them.
Dec 02 @ 900am — do PFTs, do the requisitioned bloodwork I got in the mail + extra stuff I was just informed of o_O;;
Dec 03 @ 800am — get an ECHO and then hang out in the Research Clinic until my RHC with Hawt Doc. o_O;;;;;;

I knew in advance that there was going to be a lot of extra stuff associated with this study that I’d have to do before the actual RHC, but seeing it written down on paper seems rather daunting. There’s no great stress on my part in the early stuff (other than not sleeping), but we all know I am not a morning person.

…This will be interesting….


Too early for this…



Two calls first thing this morning, one after the other.

Hawt Doc’s Case Study Nurse finally got back to me with a new date for RHC after I declined the priliminary appointment of August 27, our wedding anniversary. Apparently Hawt Doc’s a busy bee, so I was given two options: I wait for the next available appointment which is Dec.03 or I have the RHC done sooner by another doctor entirely.

I chose the December appointment.

The other phone call this morning was from Rheumy’s office — They wanted to know if I was still on the Imuran… my liver enzymes are still elevated. No other questions than that and to just keep staying off of it still. *shrugs*

Tired… so tired…

Have I mentioned how ridiculous the Dilaudid is some nights? I drugged up last night and all I could think about were the baby blankets I had started for The Twins and I think I’ve decided (or my conscious unconscience decided) to scrap the original pattern and remake the Expensive Wooly Blanket of Doom in ack!rylic baby stuffs. The biggest reason for the change in heart, pattern-wise, is that I just can’t breeze through it and I really wish I could. I know I can breeze through the EWBD, it’s just a long and boring processs, though since I’m making the blanket a lot smaller than my original, I don’t think it’ll be nearly so bad in the scheme of things… I hope.

Did I mention tired?


[RE: Baby C — It’s been quite a few days sice we’ve heard any news, possibly even a week to be honest, but it sounds like he’s slowly pulling himself to a better place. Last information we were given was that the swelling in his brain had gone down, he was opening his eyes and he was receptive to outside stimuli like voice and touch. This is pretty awesome. He will have some brain damage, but they still don’t know to what extent given babies’ brains are really great at healing and adapting. Keep your fingers crossed that our little guy comes out of the NICU roaring like a lion cub once he’s grown into himself properly.]