Notes From A House Frau XXII

What A Difference A Few Weeks Make

This picture cracks me up. The RRBB definitely enjoys his food -- on this day he had green beans, some chicken and vegetables, and some barley cereal. There might have been dessert. I can't remember. All I know is that by the end of it he had food from one end of his face to the other, which to me is an important part of discovering what he likes and doesn't like, of discovering the joy of eating. The RRHB does it a little differently, he cleans up the baby as he goes along, consistently wiping his face so that he doesn't spread food from one end of himself to the other.

It's interesting, as the RRBB turned 7 months last weekend, I can completely see him start to develop more and more independence. I know, ironic, to talk about independence in terms of a wee baby who can't walk, talk or even feed himself. But, more and more, the RRBB likes to do things independent of me -- he's almost completely weaned, and while I still feed him, technically, the food isn't coming from inside of me any longer, and that takes some getting used to. He still yearns for it, and so we've kept one or two feedings until the doctors absolutely tell me I need to stop, yet he's trying and loving so much "real" food that I'm encouraged by all of his likes (and very few, read: none, dislikes). Also, he's sitting up on his own for the most part, falling over occasionally, bumping his head, bawling, and then breaking my heart. Yet, we are so very, very lucky, as I keep saying to all of my relatives, for he's truly a happy, healthy, gregarious, charming little boy. I adore him.

Independence is an interesting concept -- I am certain the RRBB doesn't understand it psychologically, or maybe he does and I am way off the marker but, instinctively, he's trying harder and harder to separate himself from us, his parents. He complains now if he lies down in the bath, before he would sit placidly, splashing a little, now the water ends up halfway out of the tub before we're even finished. He loves Not a Box, but not so much Goodnight, Moon. If he isn't eating fast enough, he complains; but then, if it's too fast, he gets equally upset. He makes a little strange when he wakes up from a nap. Yet, if you get him at the right time, he'll charm the pants off of you. This is the real gift of parenthood, not just the unmitigated, unceasing love that renders your heart incapable of understanding how this person was not a part of your life just months ago, but seeing first-hand the evolution of a personality. Objectively, it's not something one remembers, it's not as if you can reach back into your own mind and think, "wow, what was I like at 7 months?" Yet, every day that I spend with the baby, I am seeing how fascinating it is to watch him grow -- and my heart breaks just a little each time he grows more independent, but it also means I've got a bit more freedom. Evenings, nap time (few and far between these days; teething), stroller time, visits with grandparents and granties and gruncles, and it's all a wonder to me. I can't stop marveling at him. I can't but wonder what other surprises are around the corner.

He's the only baby I will ever have. Even typing that sentence makes me sad. I never imagined I would love the baby stage as much as I have. I mean, I have always loved babies, but in the sense that I'd hold them for a while and hand them back. Cute, snuggly little things that smelled delicious and whose exhausted parents I'd barely notice. Parenting wasn't a reality to me -- the utter loss of self wasn't a devastating reality, the sheer tenacity of his will to break us completely in those first few months has almost been utterly forgotten. Now, I can sit and read while he plays beside me, holding one hand to steady him, the other in a book. That, I can do. He goes to sleep so early that my mind can drift (when I'm not so exhausted I can barely see) to a place where I can spend some time working on non-blog writing. In short, I feel lighter than I have in months.

That's not to say that the disease has let me go just yet. I see the SFDD this week and we go from there. They are almost convinced they need to switch the drugs. All I know is that I need to get off the prednisone. There's a pain in my left hip. It's familiar. And tragic. And I can take a lot, a lot of punishment from the gods or the universe or whatever karmic relativity has decided that what my world means is Wegener's and all the ensuing tragedy, but if I lose my other hip, well, I am not sure I'll recover. I need to move. Without movement, without walking, biking, swimming, I will surely curl up into a ball and disappear.

Monday Disease Blues: A Top 10 List

The RRBB had his six month shots today, and he's a little crabby, doesn't feel like eating and his nap schedule's all mixed up. So, I'm letting him play on his activity mat for a while as I sit here on a pilates ball and try to string some words together. Ups and downs, that's what the last few days are all about, ups and downs. Far more downs in terms of the disease than ups but what can you do -- every day is different. People think I'm joking when the answer to "how are you" these days is always, "well, I'm not dead!" We were at the doctor's this morning and it's semi-official -- they are probably going to put me on Cyclophosphamide for the Wegener's, and I have to wean the baby entirely sooner rather than later.

1. Who knew that weaning lead to depression? Like I need something other than the prednisone and postpartum messing with my brain. It's an unholy trinity -- but maybe bits of one will cancel the other one out. My family doctor's kids are 16 months old (she had twins) and today in the office she told me she still doesn't feel back to normal, and she's not even coping with a massive, stinking disease.

2. It's a beautiful day today and the last thing I want to do is go outside. Thankfully, the PVR is full of Oprah, Friday Night Lights and other sundries for when the RRBB is sleeping. I could read but I am even too exhausted and weepy for that today. I watched the Shania Twain episode while the baby slept a few hours ago -- I don't think I'd ever read her book -- but I'm fascinated by the fact that she wanted to lay it all out there, as pathetic and ridiculous as her actions were around the breakdown of her marriage, she simply wrote it all out and published it. Even the terrifically awful letter she wrote begging her ex-husband's mistress to leave them alone -- she published it. Oversharing? Perhaps.

3. As if I needed a reason to feel worse about always wearing pajamas. I read this beautiful post about motherhood on Kerry's blog, and then clicked over to the article she references about these terrifically hip and hot moms who never wear sweatpants, like, ever. Seriously? It's a good day if I actually change the sweatpants from the ones that I sleep in to a relatively cleaner pair to walk to the grocery store (and by "sweatpants" I am including their ugly stepchild, the legging, which I swore I would never, ever wear as pants. One should never swear anything about fashion). I would look better if I attempted to wear makeup, dyed my hair and put away the sweatpants but, hell, where would that energy come from?

4. The blues won today. Damn them.

5. CBC Radio played some really beautiful music from the National Parks Project on Sunday. Man, it made me want to take a road trip to every single one. Anything to get out of the city. Anything to get out of my house really. I'd love to take a giant trip this summer with the baby, somewhere foreign and by foreign, I mean Paris, but it's not practical given our financial situation (read: we are flat-ass broke). I miss travelling. And we'll have to learn how to do it a whole other way -- with RRBB. First up this summer: new passports. It's the last piece of ID with my maiden name on it. I will be a whole other person once that's done.

6. Teething + Needles = One Crabby Baby. Sigh.

7. The novel I'm reading for book club reminds me of Before Sunset. Still, I can't get passed page 15 and started reading Roddy Doyle's new collection of short stories instead. I'm already halfway through; it's terrific. God, I love his short sentences.

8. I can't believe I am this upset about having to wean the baby.

9. The disease is winning. And not in the #winning sense that crazy-ass Charlie Sheen's barking all around Twitter about. Today, the family doctor actually said, "We need to save your kidneys now." And I got totally freaked out and almost started bawling in her office, and it wasn't even an appointment for me -- it was supposed to be all about baby. For the very first time in my life, I don't know if the Wegener's will win. I'm scared. I am honestly terrified.

10. Feel like the worst friend in the world. I haven't talked to or seen so many people that I adore, and one of my New Year's Revolutions was to be a better friend. I'm just not hitting that goal at all and it's making me feel awful.

Okay, enough self-indulgent, feeling-sorry-for-myself claptrap. I am now going to go and eat some dinner. Perhaps I'm just hangry (hungry + angry = one irrational girl [as coined by Charidy]).

Notes From a House Frau II

Portrait of a Baby Whisperer baby, not. We tried the Baby Whisperer "EASY" program for two days and it made our RRBB the most miserable he'd ever been in his short life. He had two terrible nights, two awful days, and the program just didn't work for us. I also made myself insane consulting the book and trying umpteen different things because I thought I needed to fix something that wasn't broken. Anyway, we're back to normal now, and back to our actual easy baby. Sleeping, eating, waking, and doing quite well at night. My lesson for the day, not every book has the solution, and you don't need to listen to every one just because it's written down. You can make yourself crazy trying to do the right thing if only to stop listening to your instincts, which aren't always wrong, even if they are inexperienced.

I was at the kidney doctor this morning, and it broke my heart. The disease is going in the wrong direction -- my tests are rising when they should be falling, and the meds aren't controlling the Wegener's in the way they were supposed to. I see my SFDD next week and they'll probably suggest alternative treatment, which means no more breastfeeding. But to let things continue in this way means I'd be on dialysis in six months, and I can't lose my kidneys.

It's been so long of dealing with the disease, and being sad and frustrated is par for the course these last few weeks. I'm trying hard to find the life lessons. To see the silver lining in the cloud; to not get disparaged or angry or resentful of the disease and my broken body. Feeling scared has pervaded my days, I don't want to get sicker, I want to get better, so desperately, but I also have to be patient. Funnily enough, the doctor today described my pregnancy as one of the hardest she's ever seen. When I was in it, it was only rough for the last few weeks -- for the most part, it went exceptionally well considering the circumstances, and all of that is how our beautiful RRBB managed to be so healthy by the time he landed in the world.

So, I've spent today being sad, frustrated, and upset -- all in equal measure. Yet, there's something about my family, my RRHB and my RRBB, that I find utterly delightful. Whether it's how we spend the mornings, or how lovely the baby is at 2 AM when he's just about to fall asleep, and if this is all I can do right now, be here, with my family, because that's all I have energy for, that's all the disease will allow, then I need to be calm and careful. Take it day by day and understand that I will get better, it'll just take a long, long time. Yesterday, I did 10 sit ups. Today, I'm going to do 11. And that's how I'm going to do it, one small change by one small change, take the new drugs, deal with the side effects, and find the strength to be the best house frau I can possibly be under the circumstances.

Now That It Is Over (Maybe) I Can Talk About It

The last few weeks of my life have been the most terrifying and joyful I have ever known. The purpose of this blog has never been to document every aspect of my life, and I purposefully kept my pregnancy quiet because of all the complications that could have arisen as a result of the disease. But I do think it's important to talk about the disease, if only for other people in the world that have Wegener's Granulomatosis. If someone searches and ends up here, and knows about what I've gone through, maybe it can help someone else going through something similar.

We managed to make it to 34 weeks without very many problems. In fact, all of the problems that I did have, swollen joints, exhaustion, some other minor things that could all easily be explained by pregnancy. There's just one thing... they could just as easily been explained as the disease flaring. It was impossible to tell what was what: was I developing pre-eclampsia or was it the disease or was it just pregnancy in my case. Because it's so rare, both my disease and then women with my disease having babies, there were so many unanswered questions. The main thing I knew was that I was being followed by exceptional doctors. Then, my lab results showed disease activity, and that was that, things were flaring. It was minor and we'd get it under control. Only it didn't end up being minor at all. It ended up being dramatic, violent and life-threatening.

Five weeks ago my lungs started bleeding. I had just seen the OBGYN that afternoon and was so very tired. For the previous couple days, I couldn't catch my breath, but when the baby gets big enough, it too pushes on your lungs. Hence, yet another explanation for a disease symptom that can be confused with pregnancy. But when I coughed and a chunk of blood the size of a toonie landed in the sink, my heart stopped. That's how the disease first presented itself. That's how I got sick in the first place all those years ago. So, I sent a quick email to my pregnancy nephrologist (doctors give you email addresses now!) and asked her what to do. She sent us to the Labour and Delivery section of Mt. Sinai and then the ordeal really started. It's called hemoptysis -- I always used the term hemorrahging to describe what the disease does to my lungs -- but essentially, they were bleeding internally and it wasn't stopping. Because it's an OBGYN ward and not a disease ward, there was some confusion about what to do with me and the first night I spent in the hospital, the orders didn't get transferred over. I spent a miserable, freezing cold, uncomfortable night with a bone dry IV and coughing up bucket loads of blood for hours until they started rounds in the morning.

By then, the severity of the situation had dawned, and the chaos began. The words "life-threatening" were uttered more than once and they floated around the idea of putting me in Intensive Care. In the end, they moved me back to Labour and Delivery for one on one care. Through the course of the day, I saw, no word of a lie, 52 doctors that first day. They decided to treat the situation aggressively because of the baby. Let's not forget that I am still pregnant. They decided to do plasma replacement therapy. It's kind of like dialysis. They take out all the bad plasma, the stuff that contains the antibody that is the cause of the disease, and replace it with donated blood product. The machine is hooked up to you via a central line, and out goes all your plasma into a bag that gets destroyed. The treatment takes about three hours all tolled and then you get unhooked. We did seven days of this, plus IV steroids, to try and stop my lungs from bleeding. It took over 1o days but it worked. The disease somewhat settled down at that point, and the "plex" therapy as they call it is quite amazing -- in short, once it was finished I could feel no disease in my body whatsoever, but it only lasted until the next treatment. It did, however, contribute to my condition becoming stable. We had one little glitch with the plex, and on the second day my hemoglobin dropped, and so I had my very first blood transfusion. Of course, it didn't work the first time, so we had to do it twice. I signed a lot of consent forms and tried not to worry about all the risks. I suppose when you weigh the pros and cons, it's better not to be dead.

Things looked up from there, at least for a while, until I started developing pre-eclampsia, which is pregnancy induced hypertension. With women with underlying renal problems, the likelihood of pre-eclampsia developing is high and, of course, it's hard to tell whether the disease encouraged the pre-eclampsia or whether or not my pregnancy would have ended up with the complication anyway. The higher my blood pressure went, the more medication I had to take, everything, luckily, is safe for the baby, who, by the way, is perfectly fine. So, I am in the hospital, taking more medicine than ever, sicker than I've actually been since I was first diagnosed with the disease, and pregnant on top of it. The prednisone's making me a little batty, so I'm cleaning my hospital room at night and trying not to lose it being hooked up to all the machines, poked for blood everyday. The one saving grace was listening to the baby twice a day on the monitor and knowing that he (we didn't know "he" was a "he" at this point) was just fine.

After I had been in the hospital for two weeks and seen probably over 70-odd doctors, they called an "all doctors" meeting to decide what to do. According to my OBGYN, the plan was to get me stable and then let me go home and deliver the baby naturally, but when the pre-eclampsia started to rear its ugly head, they changed their mind and they decided to induce at 36 weeks. And when they make that decision, it starts immediately. Like, that same day. So, over we go to Labour and Delivery again and they being that process. It takes forever. I was still doing work because I was so bored just sitting there waiting for it all to happen. It's all a bit clinical, but it was the safest way to deliver the baby, and when my contractions really started they gave me an epidural because they didn't want my body to be under any more stress and for the disease to go haywire again.

So, we were mid-way through the next day, Friday, October 22, when they discovered that my placenta had really started to act up and was causing the baby distress. So, no labour for me -- they whisked me into an operating room and we had a c-section. Our RRBB was born at 3:04 in the afternoon and weighed an impressive 6 pounds 9 ounces. Not bad for 36 weeks.

The next few days are spent just dealing with being new parents, something that many people go through, we had plenty of rough starts, namely with feeding, and only because we didn't quite realize that just because the baby falls asleep after eating that he's actually full and/or had enough to eat. I was also really anemic and taking tonnes of medicine, so it took forever for my milk to come in. In the end, they let us go home, finally, after two weeks and five days in the hospital. Oh, but before we left? We had another transfusion because the surgery dropped my hemoglobin to 72. Imagine this -- having a blood transfusion while trying to breastfeed, the tubes stuck in your arms, the baby in your arms, grabbing at everything, but it worked and my iron counts were much better the next day. That gave me some much needed energy to just be home after all those days cooped up in a tiny hospital room.

We spent a glorious 24 hours at home.

Then the baby developed a little jaundice and the family doctor's scale miscalculated his weight so we were back at the hospital for him. That was a rough night. We weren't in our nice, private room any more but on the maternity ward. The couple next to us had their own baby, and baby schedule, so we didn't sleep a wink. Of course, my blood pressure was sky high, from worrying about the baby and from no sleep, so when they checked it for me, it was in a state where it wasn't safe to let me go home. We were admitted back into the hospital again, and I almost lost my mind. The resident, who was only trying to help, wouldn't let us leave. I tried to explain that I could monitor my BP at home (I had a cuff) and was seeing a team of doctors in a week, all of whom know about all of the conditions -- she kept trying to diagnose me and I kept saying that all I needed was proper rest and to get my baby out of the hospital. So, I tried to check myself out at night and the nurses and my RRHB convinced me to stay -- they didn't put anyone else beside us and my BP came down slightly. But that was it for me, it was now Friday and I had been in hospital for three weeks, one of which with my poor newborn who had seen his sweet bassinet only once in his life.

Then I did something completely out of character and checked myself out against doctors orders. My BP by the time I got home and relaxed and got some sleep? 123/71. Perfectly fine, as I knew it would be. But those last couple days were the breaking point for me. I just couldn't take anymore. Luckily, things are now starting to calm down, we think. The disease is still scary and active, and I am still recovering from all of it, but the baby is thriving, gaining weight and doing really well with breastfeeding. The last time I was this sick, it took over two years to get better, and who knows if my body will ever recover. Funny, all the doctors told me it would be fine -- well, that there would be risks but that they'd catch the disease before anything too terrible would happen. Oddly, just like when I was first diagnosed, the disease is mysterious and difficult to diagnose until it's on you like a tsunami, dragging you down and drowning you in your own blood.

Now, the really hard part begins. The recovery. Dealing with the exhaustion is one thing, I mean, we have a glorious little newborn at home, but dealing with everything else that happened on top of it took its toll. I feel a lot like I am just coping. Just getting through the days hour by hour, and that's all I can do: plasma replacement, IV steroids, bucketloads of drugs, two transfusions, another disease (pre-eclampsia that apparently lasts for six weeks post-partum), a life-threatening flare, surgery, a new baby, and prednisone-induced crazies. It's a lot. I am at loss for words but we are also incredibly lucky. We have a lot of support, my RRHB is amazing, and we have some of the greatest friends and family two people could ever have surrounding us.

Plus, we have him. And he's beyond words.

Still The Worst Time of My Life

I've been back in the hospital since Friday morning with complications from the surgery. Essentially, the necrotic (sp?) appendix has caused further complications, problems that most people don't have during such a routine operation. Because of the disease, my organ tissues are sensitive, and because the appendix stayed in my body for so long being so rotten, my bowels have simply stopped working.

Graphic, I know.

1. We came back into the hospital on Friday morning after I threw up on Thursday night and then again in the AM. My body was retaining so much water that my legs were three times their normal size and my scars were so swollen and bloated they were poking out of my legs.

2. Unlike the first hellish visit, we managed to see a doctor after about an hour. They put a tube up my nose and down into my stomach because while sitting on the bed, I "projectile vomited" (as the RRHB) said pure green bile. Seriously, it looked like grass.

3. The NG tube started to suck up everything left over in my stomach: essentially any and everything I hadn't already thrown up based on two days of eating "normally" out of the hospital.

4. They need to give my bowel a rest, which means no food or water. That's been since Friday. It's now Tuesday.

5. The doctors keep saying to be patient, that it'll rectify itself and get better but we're still here waiting for my bowels to work.

6. First it was 24-36 hours, then Tuesday at the latest and now they just don't know. More tests today, I guess.

7. The surgeon who came in this morning said that he's not surprised there are these complications. I asked him, "but I am going to get better, right?" Yes, was the definitive answer but I can't say that I am not terrified every single moment I am spending in this hospital.

8.They're desperately trying to avoid more surgery, which I can understand. I don't want more surgery. But I also wish that everything with my health wasn't so bloody complicated.

9. Lessons in it can always get worse, I suppose. And we're clinging to the positives. Piles of gas in my belly means pain but also that things are working, but not completely. Piles of antibiotics means that they are killing the infection but also my poor tummy. There will be a lot of restorative yoga and healthy eating when I get out of here.

10. Still a rotten way to spend a birthday if you ask me.

TRH Updates - The Pause

This might be the longest I've gone without blogging. Over the past two weeks, I've been tumbled upon by side effects and started to slowly weaning myself down in terms of the prednisone dosage. Hopefully, the world will open up now that I'm not taking as much medicine but the sadness persists regardless. For the most part, I'm finding it hard just to leave my house in the morning. This week was particularly difficult. I've done a lot of crying in my cubicle. It's not normal -- I realize that -- it's all the meds, but it doesn't make the day-to-day any easier. So I've been keeping quiet. I suppose no one wants to hear over and over again how miserable I am in my head. To the outside world, things are grand: work is fine, house is coming along swimmingly, RRHB is well, and the disease isn't killing me at the moment. To the inside world, it's a different story: there's panic welled up inside at the thought of leaving the house, all of television is making me bored, and the billows of depression seem to well up like a Greek tragedy threatening to overtake me entirely. Thankfully, the waves haven't swept me away just yet.

The Quiet -- Just Can't Do It

These days I'm trying to fill up the hours before I turn on myself without the will power of Ed Norton's Incredible Hulk and destroy all the good work of the last few years. The last time I dealt with the predisone crazies, truly dealt with them, it took me a long time to battle back and I think I'm more afraid of the crippling blues than I am of the disease actually killing me.

What's more, I haven't had much to say other than disease-related, general unhappiness, boring blah-de-blahs lately. It's tiring for me; I can't even imagine what it might be like for someone else to read or talk about it. I don't want to leave my house but at the same time I feel trapped. I don't want to talk but at the same time I feel so lonely. I don't want to hang out with my friends but I also don't want to sit around talking to myself all day. I don't want to sit around watching TV but I honestly don't have the energy to do anything else. So before I go absolutely bonkers, here's a list.

1. I learned that my new Classic Starts manuscript needs more work. I actually kind of expected this because it (the book) was hell to abridge and I knew it wasn't quite right when I sent it back. I'm still waiting for the substantive notes from the editor but hopefully they'll come sooner rather than later so I can get back to it.

2. Writing involves confidence that I don't seem to have at the moment. We watched the Joe Strummer documentary and it was excellent -- there was a scene when he was in the studio and said something about how great it feels the first time to do something, the first time you get it down, then you listen to it back and it all falls to shit.

3. My nephew was so tired when we were babysitting this week that he fell asleep watching Wall-E. It was cute.

4. Our kitchen floor has tile. It looks really great. As does all the trim downstairs. We are weeks, not months, away from having a main floor (not a whole kitchen just yet but soon). Today we were looking at carpets and couches. You can imagine my glee.

5. The weather last Sunday was so gorgeous that we walked all the way to Kensington and back, bought some groceries, and the fresh air was constitutionally exceptional.

6. For a girl who hates gardening, I sure am looking forward to growing vegetables. Today I said to my RRHB, "I'm going to need to figure out what seedlings to start soon." Can you believe it?

7. I don't think I've cried this much in a long time. I keep bursting into tears at work. Good thing we have shower doors to close and no one seems to notice how puffy I am.

8. Perhaps Gordon Ramsay does swear just a bit too much. I may need to break up with Hell's Kitchen. The stress of watching the show is unbelievable.

9. Bringing my lunch into work has reminded me how much I do enjoy a sandwich.

10. [This is a rhetorical question]. How does one stop the crazies after they've already begun? I know how to do it but my head is such a mess these days that if one more person asks me for something I honestly might crack in half in front of them. Now that would be a sight, wouldn't it?

Medicine Makes You Feel 100 Years Old

Between the side effects and the long lists of things that could possibly interact with aforementioned medicines, I feel trapped by all of the modernities that are supposed to be making me better, my life better. Chemical taste in my mouth like a bad song stuck in your head, no matter what you do, you're never rid of it entirely. Woozy, nauseous, hair falling out, puffy cheeks, ever-increasing appetite, tired skin, upset tummy, tired, cranky, the list goes on. And fighting. It seems I just want to fight all the time. Maybe that'll be my superhero power: starting fights.

Bad Disease Day Blues

Yesterday might have been the worst "disease day" I've had in a few years. The full implication of the side effects from the prednisone came crashing down as I came face to face with the crazies. Suppressing my immune system means I keep catching all kinds of infections, which aren't worth noting except to say that combined it's all just a bit too much. Spent much of yesterday vacillating between bawling in my cubicle and wanting to drive myself head first out our 20th floor window. I know it's not rational. I know it's the prednisone. Having been through this all before, I can recognize that the medicine is turning my brain into a gloomy source of desperation and despair, but it still doesn't make it any easier to get through the day.

Sometimes, just sometimes, it's hard to stay positive when something so strong pulls you in the other direction. I fell down a little yesterday and just cried for a good long while. My RRHB was very kind by the time I got home and let me get it all out. Really, all I wanted was someone to tell me that it's all worth it, that it's a good thing to keep fighting the disease, that it's a good thing I'm not dead. I know none of this is rational. But there are moments when I can't pull myself up from under the weight of it all.

Today, though, is better.

Sunday Sunday

We just finished watching The Big Chill. All the chores are done. I've got the last load of laundry in the wash so two more buckets to fold, not bad for 5 PM on a Sunday. Usually, I leave the laundry until the last possible moment and then it gets folded on Tuesday, maybe Wednesday. My head's so mixed up these days that everything's coming out all wrong and the more I keep busy, my fingers working, my shoulders hunched, the less time I can dedicate to wondering why, yet again, the disease is back. Wondering how come I have a huge list of all the things I want in my life and am not brave enough to get them all out in one place, to say them out loud. I know one thing for sure: perhaps I need to stop watching Intervention.

I'm halfway through The Given Day and Once (short stories are very good for the commute). I was reading one on Friday and was so engrossed that I didn't even notice my boss standing next to me on the subway. Whoops. The days are flying by and this week coming up proves to be just as busy. One freelance assignment, The Jersey Boys with my in-laws, my RRHB has a show on Friday night, and then we're seeing a hockey game with my dad (the Marlies, not the Leafs; we're not that connected) on Saturday night. I think I might have to call in sick on Monday because I'll be so tired.

Disease, what disease? That's what I'd love to say but I feel rotten this weekend. And that's hard to admit. Overall, I've been feeling so much better -- doing the GOOP detox and not eating sugar or dairy during the week, walking, restorative yoga earlier today -- but sometimes I just want to kick and scream and shout, "why f**&ing me." And enough is enough already. But it all just doesn't work out that way, does it? What I need is a top 10 list for dealing with super fancy diseases. Anyone got one of those?

TRH Updates - The Sickness

It's been a hard week, I'm not going to lie. In a way I had worked myself up for it, knew that by taking the prednisone for a month this past December, and by how I was feeling that the disease was flaring. Finding myself again at the crossroads: my body working against me and me working hard to change my life only results in more disease activity. Sometimes, it just gets you down. There's a lot of protein in my urine and my creatinine is sneaking up again -- key markers in terms of the Wegener's being active in my body. It's nothing dramatic, it's just me being back on medicine.

At least this time the Super-Fancy disease doctor asked me what treatment I would prefer. I rallied hard against the methotrexate. I really don't like giving myself and injection once a week. But maybe that's just because my RRHB and I have been watching way too much Intervention (holy crap is that show addictive; how ironic). Plus, I can't gain back all the weight I'm trying so hard to lose. I managed a month on prednisone with really no change and I can't go back to marshmallow ragdoll on methotrexate. Kindly, SFDD agreed to let me go back on imuran. Baring any dramatic episodes like the last time, let's hope my body responds well and my bloodwork starts coming back with some improvements.

I have to say, though, that after months of feeling awful, of catching everything that wandered by, of battling just to get out of bed in the morning, that I've starting fresh in the New Year with better eating habits (no sugar [we'll see how long that lasts] this week; no dairy next week) and walking both ways to the subway in the morning. You know, I'm actually feeling better. I had energy all week and only one bad day (due to mucho stress at work) where I crashed the moment I got home. Overall, I've been reading more, sleeping fine (yes, chemically induced but without it the prednisone crazies will come up and bite me on the ass), and getting a lot of stuff done on a day to day basis. My horoscope is on my side, that's got to mean something, right?

Now the goal becomes squeezing in some writing.

Boo.

Back on meds. I think it's the most depressing news I've had this month. After valiantly battling back to health, I saw the Super Fancy Disease Doctor today and even though my tests are looking okay, my symptoms are of concern. He doesn't know if the disease is flaring yet but to be careful, he's put me back on the dreaded prednisone. I hate prednisone.

I go back to see him in a month and then he'll decide if I need to go back on the methotrexate again. I really don't want to do any of it. I really don't want to cry either but that doesn't seem to matter either.

State Of Fear

It's been no secret that I've been feeling under the weather for weeks now. It's funny, I can usually pinpoint the exact moment of when it all started to go wrong, and this time around it was the second week of September when my mom passed away. I think trying to hold it all together might have done me in and for the last few weeks I've been having disease symptoms. Symptoms that can also be explained by other causes: a fall down the subway stairs, yoga after a year away, terrible shoes, all could be the reason for my joint pain. The cold that simply refuses to die could be the reason why my sinuses are so besieged at the moment. The exhaustion from a very busy life and the time change could be causing the sluggish, always-tired feelings that I wake up with every single morning. But I can't say that I'm not worried. I can't say that I'm not totally freaked out that in the few months I've been off the needle that the disease has reared its ugly head. I'm just trying not to totally panic and make it even worse. Cross your fingers for me.

Free At Last

This morning was a great bloody morning. I rode my bike to work. Now I know I'm late in doing this but I simply couldn't get my sh*t together before this morning. My timing, however, couldn't have been more perfect as I had totally forgotten I needed to see the Super Fancy Disease Doctor at 9:30. Which meant that I hopped back on my bike and pedaled myself over there just in time for my appointment with one minute to spare.

The good news?

I no longer have to take ANY disease medication!

None.

No needle.

No pills.

Nothing.

It's just for three months. If he sees any disease activity whatsoever they'll put me back on a low dose of prednisone or maybe even back on the needle, but for now, I'm disease and medication free.

The sun is certainly shining.

The Quotable Austen

"...At her time of life, anything of an illness destroys the bloom for ever! Hers has been a very short one! She was as handsome a girl last September as any I ever saw, and as likely to attract the men."

From Sense and Sensibility.

My family doctor to me upon learning of the treatment for my disease all those years ago, "It's such a shame that this had to happy to such a pretty girl."

Good to see the sentiment hasn't changed in three hundred-odd years.

Adventures In Doctoring

Love arriving at the hospital an hour and a half before my regular scheduled appointment to get a chest x-ray only to find that the intern has filled the form out incorrectly, which means I've got to go bother poor Rose, the secretary, and get her to fix it, only to arrive back and discover that it'll be at least another hour before it's my turn, and then discover I've been semi-usurped by a seriously old woman with a lovely male nurse who are still in the change room when I poke my head in and say, "I've got an appointment at three," which means they whiz me through because the x-ray itself takes approximately 17 seconds, and by the time I finished, she hadn't even made it to the room, slooooowwww.

And I wasn't even late for the Super Fancy Disease Doctor.

Where I discover that my tests are excellent (yay! double yay!) even if my blood pressure's a bit high but that he's still got no idea why I'm so bloody tired I can barely make it up a flight of subway steps, is it the disease is it not the disease, maybe I'm eating all wrong or maybe it's just the weather pulling me down, down, down with every original flake that falls from the sky, and when they have no answers it just means you have to see them more often, so I'm back in a month for more bloodwork, more tests and a whole bunch of other non-fun health-related things.

I did manage to get home a little early and took a nice long walk to the streetcar stop.

But I'm so tired that I'm finding it absolutely impossible to even get one sentence down, completely unlike how I was on Sunday where I managed over 5,000 words (in a row!) before collapsing in front of the TV with a delicious vegetarian burrito and the teacher's words are still echoing in my mind, "it's those of you who work regularly that'll survive," the rest are just "tourists," and the last thing I want to be today is a tourist in my own writing life, no my own life.

And isn't American Idol on?

Oh, And...

Peeing in a jug really farking sucks.

What A Difference A Night Makes

Woke up after having a good night's sleep. Finished Jennifer Haigh's The Condition (#17). And managed to not only be on time for my appointment with Dr. Kidney today, but I was even fifteen minutes early, which gave me plenty of time to spend with Marianne and Elinor Dashwood.

I heart my kidney doctor, he's kind and gentle, and has always, always been on top of my care in terms of the disease. But today, today is a grand day: my tests (blood work) are better than they've been in 5 years. My creatinine level is 97 -- it hasn't been under 100 since 2003, well before the disease flared this time around.

On top of that, I've managed to lose 4 kilos!

So, things are moving in the right direction when it comes to my health. Maybe I should stop complaining about the medicine, because it's literally saved my life.

Am Sick of Being Sick And Am Blaming The Cab Driver And The TB Tourist

The end of the rope is nigh now that almost a week has passed and the sickness has evolved as such (and for those of you who don't care, please skip this post):

1. Slight tickle in the throat on the plane + no sleep + massive cold sore = the ominous beginning. When we exited the plane last Saturday at 5 AM Toronto time, my RRHB said: "WHAT is that?" This was followed by a look that can only be described as disgust.

2. Needle on Saturday AM + no sleep = feeling like I've been run over by the kind of truck that evens out pavement. Coughing, coughing, coughing, coughing, rinse, repeat.

3. Good night's sleep + good book + my own bed = waking up Sunday morning feeling refreshed, renewed and actually better. Go visiting, go grocery shopping, do all the laundry. See, I'm better!

4. Coughing + coughing (see above) - good night's sleep + 250+ emails = feeling worse on Monday morning and call in sick to school. Manage to make it through a whole day's work but walk home from the bus stop with legs so wobbly I am afraid I won't actually cross the threshold of our house.

5. See #4 + a fever - any sleep = sleeping in and heading to work late, but feeling actually well enough to make it through the rest of the day and attend every meeting I actually had so far in the week. But have possibly infected entire office. Perhaps not so smart.

6. 5 days of coughing + wicked sinus headaches + runny nose - any solid rest = doctor's appointment on Wednesday.

7. Ordered into quarantine for Thursday and Friday which means I've missed or am missing the following: The Book Lover's Ball (I was actually looking forward to dressing up like Sylvia Plath in my red dress and Mexican beads), two days of work, lunch with Sam and Chico, and quite possibly The Weakerthans outdoor show at Nathan Phillips Square tomorrow night. But forced quarantine means that I've caught up on all the TV on the PVR. Have now seen all the episodes of jPod (which looks, acts and smells a lot like the book, yes, that's a given, but the feature film Everything's Gone Green, right down to the set decoration and the secondary characters) and am enjoying it, quite liked Eli Stone, am shocked and dismayed by Paul's extra-curricular activities on Corrie Street, and was reduced to watching Wild Hogs (absolutely embarrassingly awful) and semi-delighted to see The Science of Sleep, which then led me to searching out Serge Gainsbourg on YouTube and falling into an internet coma (damn you Ethan Hawke, damn you for pulling me back into the spoils of celebrity gossip if only for a second) until I recovered enough to catch up somewhat on my posts since we've been back from vacation.

8. This morning: coughing up a bit of blood + meds + exhaustion + good night's sleep + a dry house = feeling better but not 100% and when will it end? Stupid disease medication. Stupid immune system. Bah! But isn't the snow pretty?

How is everyone else?

Adventures In Illness Part 81358

So yesterday I went to see the family doctor because I've got this strange rash on both sides of my nose that looks like eczema, and it simply won't go away. That coupled with the lip blisters that lead to cold sores cropping up for the second time in two weeks ensures that I'm looking awesome these days.

Anyway. I think the rash-type thing is a result of the meds, it's the only thing that it can be as I haven't changed anything with respect to my skin care regime, and even tried stopping washing my face for a day to see if that would help (it didn't). Even so, the family doctor wasn't willing to make a diagnosis and even suggested that I go see the Super Fancy Disease Doctor about it. Considering he's, like, the smartest doctor in the world and it's just a rash, I felt that maybe that wasn't quite the right thing to do.

Without having ANY idea what it might be or what might be causing it, they're sending me to a dermatologist, which is fine. Except they don't want to TREAT it in case it goes away or something before I see said dermatologist without them figuring out exactly what it is. Yay for me. It means that however long it takes for them to refer me that I'll have to continue to look like I have the chicken pox.

I tell you, Wegener's is awesome.

Not.