Draaaaaaaaama llama

Okay, not really.

I’ve been sofa-bound for the past week. Without getting into too many foul details, let’s just say I may have possibly had some kind of food poisoning which rendered my body into a state of shock & awe. Not in a good way and to the point that I ended up in the Emergency at the hospital because I was peeing blood the colour of red Gatorade.

Thursday prior to that, I was in for my now annual visit to see Kidney Guy and at that time there was a hint of blood in my urine at the time but neither of us were particularly concerned — it was only when I was making it look like I had poured a whole bottle of red Gatorade down the toilet that we became pretty concerned. The Doctor in the ER was concerned that I had two separate issues going on: food poisoning (obviously) and a possible Lupus-Kidney flareup. But since the ER is not well equipped, not prepared to deal with that kind of issue, they wanted me to follow up on Monday with both Rheumy & Kidney Guy. Well, Kidney Guy didn’t know what to make of it, Rheumy II didn’t really much care (for a lack of a better term). We did followup testing and the peeing blood thing stopped as of Monday/Tuesday. I haven’t seen either of my doctors because it would appear that none of the tests they did showed any issues — Kidney Guy was thinking that perhaps it wasn’t my kidneys that were acting up, but my bladder.

Either way, I’m better. Not great, but better.

The sustenance I’ve had for the last week has been rather sad & depressing, but most definitely needed: Honey water, Gatorade, strawberry probiotic yoghurt, Coconut Water, Salted Crackers, Chinese rice porridge, Homemade Quickie Pops (made in my new toy, the Zoku) and whatever seems to agree with my tummy. In some cases, that’s been: homemade fried pork cutlet sammiches with my homemade picante sauce & Charlesford, meatloaf dinner from MIL and Peach & Pear-Orange Jello from Mom (with whipped cream!)

It’s been a rough, rough, incredibly rough week. My insides are still not 100% A-Okay but I am crossing my fingers that I will be able to make it to Father’s Day Brunch tomorrow. We’re doing the usual homemade eggs benny at Mom & Dad’s tomorrow and I am cooking. I have a few recipes, believe it or not, that I need to post that I’ve made over the last few days, but I shall make them each a separate post as to not clutter up the health update that I wanted to put down somewhere for my own records. I do need to write it down in my daytimer, too, but I thought that I should let everyone know who left me get well wishes last weekend that I am still alive and my insides are slowly on the mend.


GUH! Seriously!?

So I called Kidney Guy’s secretary.

I’m screwed.

Seriously, wtf?

Because of this whole “discharged from here and re-admitted to here”, the protocol is totally different. Their office does NOT do regular monthly bloodwork requests (odd), but I’ve been told by Kidney Guy to do it once every 2 months.

The office only send out requisitions one month before your next scheduled visit.

That would mean I’m not getting labs done until 2012! WTF?!? GAH.

So confused…

I sent kidney guy’s nurse an email asking her if I need a new lab requisition for the bloodwork I need to get done, which is now being bumped to once every 2 months..

Turns out Kidney Guy discharged me from the GN Clinic, which is what she is a part of. I thought she was HIS nurse. So now I no longer get to see her at future appointments. The only time I will get to see her in the future, should it be required, is if SALLY decides to go crazy on my kidneys again..

So.. yea.

Now I have to call Kidney Guy’s secretary (??) to ask for a new requisition because of hte change in clinic status(?) but i don’t have kidney guy’s secretary’s number or any number for kidney guy for that matter since I thought that she was his nurse and was told if I had any problems, she’s my first contact o_O;;

Now I have to update all my numbers again @.o I hate doing that.

Kidney update

Well. It would appear that Kidney Guy is extremely pleased with things and is from now on, “Just hanging on for the ride.”

He’s “bored” with me. Which is to say, my kidneys are behaving very well and so my visits with him & Nurse Sandra, who I haven’t seen in at least 2-3 appointments now :( will be dialed down to once a year and my bloodwork will now be once every two months. WOO!! I am quite pleased about that last part and am especially thrilled that I don’t have to go to the lab on Monday as was originally planned. Next round of bloodwork will be in July. It’s kind of nice when a doctor can say he’s happy that he doesn’t have to worry about me right now.

We have discovered though that with all my medications, my bladder has become “lazy”. Which is why I’ve been having peeing issues the last 3-4+ months. Nothing wrong with last week’s tests, from what he could see. My body’s ability to retain & excrete fluids is in equilibrium, so he’s not too worried, I just have to put up with it and the slowness at which my body chooses to do things. I was kind of hoping that he would be willing to increase my waterpill doseage, but because of all the rest of the meds I’m on the waterpill would basically make my blood pressure plummet lower than it already is and I would feel absolutely horrific with possibly detrimental effects. The Viagra already lowers my blood pressure, as do the blood pressure meds (obviously) he put me on to keep the kidneys happy and he doesn’t want my blood pressure going any lower than it already is. Only recommendation he had to reduce the puff is lower my salt intake, which he said would be just like having another dose of waterpill. ~I~ think he’s lying to me, but I know he’s right, I’m just pouting. With the way my body is, I have a tendency to retain salt & fluids more so than the average person unfortunately. I just wanted to have something go my way for once with meds, which is why I’m whining about the waterpill.

So yep. That’s it. I see him again next spring unless he finds that my tests are showing something weird or something feels incredibly wrong. Kind of nice to have someone tell me one part of my body is actually cooperating for once and behaving decently. Keep your fingers crossed my kidneys stay that way until my next visit with him.

So there’s talk about me possibly seeing a social worker…

It’s sort of to find me a therapist/councillor or something and it’s been brought up a couple of times now. I guess when at first it was brought up (3 years ago?) I was just not wanting to talk to anyone, I just wanted to be left alone.

Now, I’m kind of.. I dunno. Fam Doc for the most part is also sorta kinda my councillor for a lack of a better term. I see him once a month and we talk about pretty much everything:How my pain is going, how it’s affecting me, how it’s affecting The Hubbs, and it’s also one of those things where I just didnt want to have to rehash the whole history of everything.

Some days it was/is still a little too raw to deal with and I just want to be left alone to be honest.

Now… I still don’t really want to rehash the history of everything but Nurse Sandra has been most recently the one to bring it up. The first time it was brought up by a complete stranger, occupational therapist in fact, who I had no rapport with. I’m comfortable discussing stuff with Nurse Sandra on a one to one level, just like Fam Doc. Bonus is that she’s female, so obviously some things are slightly easier to talk and joke about.

Anyhow, she brought up the other day that she’s super concerned about how I’m doing psycho-socially. She doesn’t want to assume under any circumstances that I am in fact coping with any of this well on my own. In her opinion, I’m not even normal by a ‘chronic disease normal’. Having 3… no 4… no 5(!) chronic diseases isn’t normal by a long shot and considering all the medication I’m on, there’s a good chance that stuff with me & The Hubbs is no longer normal either like intimacy, sex, and just day-to-day living. Factor in dreams that we may have had at some point which are no longer possible given my health, that’s gotta be rough, in her opinion.

So she wants to make sure that if I need someone to help me get through things emotionally that I have the support there — as much as friends and family are great, they can only do SO much. I have the support medically all over the place, but she wants to make sure I have proper support mentally.

… And now that I’ve actually written that out in front of me, I guess that makes sense :/

My biggest worry of seeing someone is not being able to jive well with them. I’m not saying I want a therapist to be my best friend or anything, but I sure don’t want to have to deal with say, someone like Rheumy or Cow-Stamp Doc. That would kill me right on the spot. I sure as hell don’t want to be dealing with someone with MIL’s personality either where everything in the world is bright blue skies and white fluffy clouds with unicorns. Yanno?

I don’t really know what I expect from something like that, to be honest, but it does scare me so. I’m not saying that I’m invincible, but I probably really should face up to the fact that The Hubbs needs me to learn how to deal with things on my own without constantly burdening him with my fears and disappointments in life.


I guess I should do what’s best for our relationship, pull up my big girl pants and say yes to seeing a social worker -_-;;

So yea, that was the biggest conversation with my appointment with Kidney Guy on Thursday. Oddly enough, I didn’t see him for most of the appointment until about the last 15-20 minutes of what seemed to be an hour-long appointment. Totally unheard of appointment time for me!

The other conversation we had of pretty big importance is that Nurse Sandra has asked that Kidney Guy make a referral for me to see the people at the Chronic Pain Centre. She had sent one of her other patients who’s been dealing with a lot of stuff, just like me, and has since had an incredibly huge improvement in her quality of life. Since that discovery, Nurse Sandra’s been keeping me in her thoughts about seeing if we can do the same for me.

So at some point, I guess I’ll be seeing another whole new set of specialists and hopefully come up with some more productive treatment options. Not that there hasn’t been a lack of trying on Family Doc’s end. He’s definitely been doing an admirable job of trying to find solutions, we’re just not coming up with great results :(

Final thing we spoke about — I asked if I could start the water pills again. I just feel so puffy and ew. There wasn’t a huge concern about me starting it again, just some slight reservation and caution because the body can become lazy and dependant on taking a water pill once you start using it on a regular basis to flush out excess fluids in the body. Other than that warning, as far as I know everyone’s a-okay with me taking it. I just had to write an emai on Friday checking to see what the doseage should be to start with and when I should take it. The prescription label is rather vague with it’s instructions of 1/2-1 pill daily as needed.

So yea. I guess when I get an email back tomorrow about the water pill, I’ll take a deep big girl breath and ask Nurse Sandra once more on her thoughts about the social worker, maybe get her to give me 5 minutes of cyber-hand holding while she gets the ball rolling and we’ll see what happens from there. I guess my biggest thing I’ll have to make she knows is my discomfort with speaking with someone I may not feel comfortable with. Given that I told her that she’s pretty much the only other person on my awesome list that I feel totally comfortable talking to about all my stuffs going on, I think she’ll understand my worries and hopefully be able to forward that information onto whoever I see in the future.

…. Does this mean I’ve essentially committed myself to seeing someone….????

Ouf o_O;;;;;

KIdney Guy

I have a fair amount of stuff I need to digest before I can write.

I’m super tired and spent an unusually long time with Kidney Guy’s nurse this afternoon talking about … stuff.

But just so I don’t forget:
1) Chronic Pain Centre
2) Social Worker/Therpist
3) Water Pill (oh crap, I gotta send off an email about that, too!)
4) Sex

In a nutshell that’s the stuff that we talked about.

I’ll figure out how to write about it later, perhaps even tomorrow. Right now, I need sleep.

Side Thought — Urgh.. Tummy’s upset, I hope this isn’t the start of Cymbalta side effects @.o;;;

Heh. Kidney Guy is funneh.

So I had my 6(?) month visit with Kidney Guy.

When I checked in for my appointment, I was informed that Kidney Guy didn’t have clinic today. What do you say to the receptionist when she tells you that you’re wrong and you don’t in fact have an appointment? Honestly, the only thing I said was, “REALLY.”

I dunno WHAT it is with all my doctors that have clinic in a hospital, but I average getting lost in some administrative shuffle at least once every couple of years, it seems. After a lot of kerfuffling with the receptionist calling this person, that person and eventually talking to Kidney Guy as he walked through reception, I got to see Kidney Guy.

I didn’t even get my vitals taken. Kidney Guy just came into the ridiculously busy waiting room and beckoned me with a rather “come hither” finger wave and a goofy grin on his face to follow him, instead of waiting around for the nurses. It’s probably my imagination, but he amuses me just as much as Hawt Doc… and Sinus Guy… and Family Doc now that I think about it. Why are all my doctors in their early-mid 40’s and kina on the skinnier side? Well, Sinus Guy is probably closer to 50, but still… skinny!

Oh GOD. I think the Moose is working overtime, I have got to get off this shit. Please, please please! XD



He’s been getting a bajillion letters from all my doctors, just like Cow Stamp Doc had mentioned when I saw him last month. He asked how things were going since I’d seen him last with the whole heart-catheterization with Hawt Doc and a couple of other things. He was also somewhat concerned about the light-headedness I might be experiencing with the Viagra.

Apparently, my kidneys are starting to spew protein again and so I have an extra test that needs to be done with my next set of labwork at the end of the month. He’s not hugely concerned, he’s about 90% happy with the way things are being treated and the Lupus isn’t wreaking any havoc on the kidneys, but the numbers are still concerning and need to be paid attention to, so I get to see him again in June. Boo for June, because that’s only two and a half months away!

We had a chat about the lightheadedness, but it hasn’t really been much of an issue until I start shake’n’baking the moose. He asked me what Rheumy’s thoughts were on my pain/elavil/lyrica/etc and I told him that she had not stated any opinions about my pain. He didn’t seem terribly surprised at that. He is aware of Rheumy’s retiring in the summer and he asked me if Family Doc had sent in a requisition to see Rheumy II. My understanding of things was that Rheumy I was going to be sending Rheumy II the requisition herself, but according to Kidney Guy, after he kind of snorted, he said that hasn’t been the way Rheumy’s has been doing things as of late and if my pain is as bad as it has been, then waiting 4-5 months to see the new Rheumy would not be a good thing. So now I have to go and talk to Fam Doc about this next week on top of all my other stuff, nice thing is, he said don’t worry too much because he’ll mention it in his follow-up letter.

What else… OH. I mentioned to him that I’m sick and tired of this pain thing that has no solution, so I’m seriously considering getting Fam Doc to prescribe the Cesamet for me after we’d discussed it last month. Kidney Guy said, that in his experience, there are more side effects with the Cesamet than with the Dilaudid — more experiences with stoned feelings, was what he said. I basically told him that with the amount of the Dilaudid I’m taking, I’m already pretty stoned every night, taking anywhere from 16-20mg depending on how bad things are. He did ask if we increased my baseline doseage and I said that we had discussed that too and my reservations against doing so is that I would be completely useless if I took the hydromorphone twice a day.

To be honest, other than his concern about me having to wait to see Rheumy II to discuss my pain, I dunno how he feels about my current pain management. He poked and prodded my arm a smidge and just kind of had his own mental thought and left it at that. It was kind of funny when I told him that Family Doc was kind of upset that the Elavil hadn’t worked a few months back. He chuckled and said that most doctors find it a personal afront to their abilities when something doesn’t work. Oh. And he said I’m a “unique” patient. I said that was certainly a nicer way of putting it than the way Cow Stamp Doc had worded things last month.

He wasn’t aware that I was seeing Cow Stamp Doc and asked why I was seeing him. The simple answer was that I’ve been seeing him for years for stuff completely unrelated to SALLY’s arrival. Apparently Cow Stamp Doc has a reputation for having an “interesting personality”. The whole story about my current state of being “is like watching an ABC Soap Opera, you never know what’s going to happen next” was sort of par for the course in terms of his interactions with patients, according to Fam Doc. Kidney Guy said that if I’m amused by that, I should see what he’s like with colleagues. ^_^

Good god… now that I’m actually thinking about it: I probably am just like an “ABC Soap” at the Doctors’ Water Coolers :P~

The number of doctors I see, paired with the doctors that actually know each other outside of work… *Erk!*

Mental note: Stop thinking weird, perverted thoughts about all my doctors. Especially those that socialize outside work, cuz I’m bound to be gossip fodder, if I’m not already :P~

So yea, that was pretty much it for the day.

Let’s hope that my appointment in June doesn’t result in the same amount kerfuffles.

Now I am even more mopey.

I saw Kidney Guy today… what the hell is it with all my doctors suddenly questioning my pain and drug useage? He asked me all sorts of questions which have never been raised before, poked me and prodded me all over and did a more thorough check-up on me than I’ve ever had done by him before.

I’ve been having pain for like the last 3 years and only now they’re thinking it’s a problem because I’m taking all sorts of crap for it?

My mother had a brilliant reply to that question when I said it in the car on the way home which just made me more bitter and angry with her, ”Maybe they thought you were faking it.” >_< It’s more like MY MOTHER thinks I’m faking it. *snuffles*

Kidney Guy says that from a renal standpoint, everything's great. No protein or blood happening, white blood cell count is fantastic given I'm on an immunosuppressant and everything's pretty clean looking. He does however, like everyone else, have issues with what's going on with my liver. He was the first to broach the subject of if I've seen a liver specialist yet. The answer is no, but GI Guy is looking into it a little bit more as did Family Doc over the summer with extra bloodwork and that ultrasound. That satisfied him for the time being.

In the meanwhile, he is sending a note off to Family Doc for my appointment next week to discuss the idea of being put on a certain class of anti-depressant drugs to help with regulating my sleep and possibly the pain as well. He did make it clear that he does not think I'm depressed, it just so happens that it's an anti-depressant that helps with muscle and nerve pain that Lupus & Scleroderma patients have. He's a little leary of being the one to add another drug willy nilly to my current cocktail because he's of the opinion that I am actually rather sensitive to a lot of stuff. So he'll leave it to the discression of Family Doc next week.

Now I'm just bitter and upset about everything.

I can't do anything about anything and it's making me more sad.


I’m totally freaking exhausted and I h-u-r-t-!

My shoulder is just killing me and The Hubbs is down with The Plague(tm). His sinuses are blocked up, his head hurts and feels like it’s going to assplode, his ears hurt and good lord his cough sounds hideous… his chest is all blarghy. It’s really gross to hear. I hope I don’t get whatever he’s got.

Poor boy. Anywho…

These last two days have been ridiculously tiring.

Saw Kidney Guy & Nurse Sandra today. I’m on Altace again for the heart/kidney/blood vessel protection and to some degree blood pressure.

As to the whole hideous sweating I’m still dealing with, there is a possibility that we’ve got a Diabetes issue now. It’s kind of an uncommon symptom, but even though the urine tests are showing no signs of it at a glance, we need to do bloodwork to test for definite sure. The next round of bloodwork and every future trip to the lab will now include testing my sugars. If I had to start daily testing of blood sugars, it would be an ultimate low for me and I would be miserable as all fuck. :(

I had to call Nurse Sandra back this afternoon to double-double check to see if it was okay to be taking the Altace, it turns out there’s drug interactions when paired with the Imuran. It causes a decrease in the production of blood levels in the body. Who knew? I also forgot to mention to her this morning that I’ve been bruising really easily the last few weeks. She said that my hemoglobin levels are actually doing quite awesome, so that is now once again prompting yet another round of extra bloodwork to figure out what’s going on. She emailed me the add-on requisition to take with me at the end of the month that’s going to be checking for coagulation :P

Other than that, it would appear that my normal state of being involves regular fluctuation in all my labwork — they’re keeping an eye specifically on my heart enzymes because now they’re worried about the startings of congestive heart failure -_- Really… WTF?!


In other far more cheerful news — I went shopping with Mom again. I’ve noticed that the walking is not helping the pain in my quads and hips. After my appointment we went for breakky at McD’s and then walked around Northland for an hour and some then headed over to Co-Op to get some groceries and fill my prescription.

I finally found the pillow I’ve been searching high and low for! I got one of those buckwheat filled pillows and holy cow did I have a great nap. For the year or so, I’ve been constantly switching between pillows at night and even to the point that I’ve been using my magic bag as a pillow because it’s been the most comfortable. I am rather embarassed that I had to go to an “As Seen on TV!” store, but it was only $20 as opposed to $40 or more. It was actually kind of fun being in the store because I got to see all those infomercial products up close and personal. I so should not be allowed in that store. They had ShamWoW! if anyone’s interested ^_-

As for the grocery store excursion, I get far too much enjoyment out of those trips. I picked up a small little container of tzatziki that I absolutely love from Liberte in Quebec. This stuff is so incredibly thick it’s almost like cream cheese or butter and so tasty with just a pita bread. Needless to say, I’m going to be gorging on that for the next week or so and not want to see the stuff again for a few months.

I’ve had a hankering to bake again, mostly bread as opposed to anything else. On Saturday I had the best homemade sourdough bread ever and it’s kind of funny because I’ve been thinking of trying my hand at making sourdough before I even knew that R & J had taken on the hobby themselves.

Because Mom was with me, she insisted that I buy the 10 kilo bag of unbleached all purpose flour. Why? Because there was no unbleached a.p. flour in any other size. -_-; I haven’t used a 10 kg bag of flour within a reasonable amount of time since before I got sick! I also bought a small bag of 100% whole wheat flour from a local company who’s name totally escapes me right now. The logic of that purchase was that I wanted to make a sourdough starter with the least amount of processed ingredients as possible to increase the chances of having all the good yeasties come and feast on all the natural yumminess.

I’m hoping to get back into making hot cross buns again for Easter (though not necessarily specifically or because of Easter) because they’re so freaking tasty when homemade. I have a serious dislike for store-bought hot cross buns, they’re super eww in my opinion. As an alternative to traditional hot cross buns, I came across a recipe for Cranberry Bread. It looks almost exactly like hot cross buns only it’s a quickbread! Reading the ingredients, I think I might doctor the recipe to include the traditional cinnamon, cloves, allspice & nutmeg. We’ll see what happens.

So yea, that’s been my day in a nutshell. I think I’m done with appointments for the rest of the month until the first week of April, then it’ll be a gong show again: three appointments all in a row.

Hmmmm :/

I just talked to Kidney Nurse…

Apparently my cholesterol levels have increased slightly and they’re watching hawk-like at my triglycerides. On the whole, because I’m on steroids, I will as a baseline, have a higher cholesterol level than what is considered normal. It’s not crazy high, only slightly elevated, but with the kidney disease (of which I officially have as well, go figure), lupus & SALLY + [insert what other crud here] it makes it so they are watching EVERYTHING like a hawk.

The diabetes was one they were always super wary about along with the high BP – though that in and of itself, sans meds in my normal state, is kinda low-ish.

The fact that diabetes runs on Dad’s side of the family just makes me that much more aware and rather frustrated at how my body is coping with SALLY et al.

My body is C-O-N-F-U-S-E-D-!

Poopiness I tell you. Poopiness.

Oh… and we’re spewing protein again.. not a lot, but it is some. Bleh.