Monday, December 13, 2010

The Pain Is Getting Better (?)


Wanted to report in. Had another shoulder injection last Tuesday, this time into the side of my shoulder. My rheumatologist decided on that approach, which is called a subacromial bursa injection, since the last injection didn't seem to do anything. She also used a different corticosteroid this time, Kenalog (Triamcinolone Acetonide), for the same reason.

She warned me this injection would hurt more, and that she'd be giving me a shot first to freeze the area. I was like, whatever, bring it on! I mean, I'd been having quite a bit of pain anyway, and the whole point of the injection was to help.

I won't kid you, though, it did hurt to a certain extent. Did it kill? Of course not. Whenever people talk about those pain scales of 1 to 10, I think of someone on train tracks getting their legs run over. I think that would pretty much be a 10. Kind of puts things in perspective, don't you think?

So the shot? Well, compared to that, I couldn't even really say a 1-2, but, yeah, it hurt.

Although, as I said to my doctor, compared to the pain I've been feeling, particularly for 1 two-week period I suffered through, it didn't in any way compare, so, again, whatever!

My very nice doctor gave me painkiller samples to get me through the next few days, since the last time I'd had a 3-day flare from the steroid.

I'd taken the day off, to rest my shoulder and ice it. I'd took the painkillers, but only for two days, because while taking them, I couldn't take sleeping pills, and I couldn't sleep because my shoulder hurt too much at night. Can you say Catch-22?

So almost a week later, I was pretty much convinced that, once again, steroid shots had failed me.

Until last night.

What changed my mind?

When I went to bed, it was the first night in pretty much three months that I haven't hurt to the extent that I couldn't sleep. I lay down, and waited for the pain to kick in. It's been hurting throughout the day, every day, but at night, it's unrelenting. No matter what position I lie in – on the shoulder, on my back, on the other side – it hurts.

Last night, not so much! It ached very slightly, but practically nothing!

I almost couldn't believe it!

And on Friday, I'd even started up my physiotherapy exercises again: heat the shoulder thoroughly with heat pack, do exercises, then ice shoulder, at least 3 times per day.

I'm thinking this might work!!

Yippee!

:) L

P.S. No, that's not my hairy back in the picture!
P.P.S. I'd like to know why my computer always insists I'm spelling the word "rheumatologist" wrong...

Saturday, December 4, 2010

1st Anniversary

It was a year ago this week that my world changed.

I was planning a Christmas party for the coming weekend and had taken the week off work. Everything was fine, until my hands got sore, and the aching in my body wouldn't go away, even though I hadn't gone to the gym in a few days. I had no clue what was going on, but wasn't that worried. Just vaguely thought I must be coming down with something.

Vaguely because I was too busy getting ready for my party! Christmas cookie party! Friends! Fun! Christmas music! Glowing candles! The smells of clementines and coffee and cinnamon and yummy cookies! Who had time to worry about getting sick???

Besides, I hardly ever got sick. I seriously have had maybe 4 colds in the last 10 years. No kidding! The last real illness was the flu and that was some 13 years ago. I have a very healthy immune system.

Little did I know that that healthy, healthy immune system was about to run rampant and turn on me.

The party was Sunday afternoon. I was so thankful toward the end, when just my sisters and their families remained, that my youngest niece played helper and cleaned up. I was wiped and sore. But happy. Still not thinking.

The next morning, I couldn't move when I woke up. I mean, literally couldn't move.

It had been a week since the first symptoms of something wrong had begun to set in.

I finally managed to get out of bed and called my doctor to make an appointment. The next day was even worse. I wouldn't say I was paralyzed in the medical sense of the word (obviously not!), but close: so stiff and sore I can't even begin to describe it. The thought of experiencing that again scares me, especially since now I've had pain with the symptoms and know it would be much worse. I called the doctor's office in a panic at 6 in the morning, then drove there without an appointment, even though I was scheduled to go in the next day.

Welcome to the world of rheumatoid arthritis, you!

I had no clue what I was in for.

The drugs are a miracle. I thank god, the stars, the world, the ground I walk on, and scientists, most of all scientists, every day for the drugs. Without them I wouldn't be able to get out of bed. I don't exaggerate. I can't imagine how people with RA years ago survived without them.

It's been a tough year because of RA and for other reasons, but I surprise myself with my resilience, strength and character. I honestly didn't know I had it in me!

These past few weeks have been particularly tough: on top of everything else, I've developed frozen shoulder in my left shoulder. Who knows why? For the enjoyment of the universe? Because life isn't fair? Because somebody had to? Just cause? Really doesn't matter. It just is, like so much else in life. So, hard as it is, and freakin' painful as it was (and it was!!!! – but luckily the pain is dying down), I keep going.

It isn't courage. I don't really know why people say that. Courage is jumping into a lake to save someone when you have the choice not to. What is my choice? To lie in bed all day and moan? Not really. I'm not that badly off. Not compared to some people. So I would never say it's courage. Character, yes. Fortitude, sure, OK. You just keep going. One step after the other, just the way you always have. Sure, it's a little more challenging, and, sure, I feel a little more cranky at times, and have way less patience with those who are self-indulgent. So you have a cold and your nose is dripping? Get a Kleenex! I am also, paradoxically, more patient and understanding in many ways.

Do I wish I was here? No.

No.

And once again, no.

But I am. And so I go on. As do we all.

Happy Anniversary to me.

Monday, November 22, 2010

In Which a Number of Things Are History

The Arava's history, as is my shoulder apparently, mwahahaha!

All joking aside, I'm feeling about as gray as the day outside.

The Arava upset my stomach to no end. At first I thought it was something I ate. Then it went on and on and it occurred to me that, no, it wasn't any food, it was the freakin' drug! Not so good.

And today I went to my rheumatologist re my shoulder and confirmed that, so, Enbrel it is.

And speaking of the shoulder, she doesn't really know what's up. Yes, it is stiff and she thinks, a frozen shoulder now. How exciting. Rotator cuff tear? Possibly. Even more exciting.

She thinks its odd, though, that I have had pain even at rest, not just upon movement. Things don't add up in her opinion. Me, I'm just tired.

So she did up an ultrasound recquisition, then I walked down the hall to the X-ray place and submitted myself to torture. Yes, torture. It's all in the name of science and figuring out what's wrong, so it's all good, but definitely not a happy place.

Holding my hand on my lap? Done! Bending my elbow and moving my hand to the side? Not so done. Placing my hand behind my back? You have got to be seriously kidding me! By that point, my eyes were welling up.

The pictures looked cool, though. Kind of like the surface of the moon...

We should have the results in 2-3 days.

I just want my body back.

Monday, November 15, 2010

My Freakin' Shoulder...

 
...is still killin' me.

Went to see the physiotherapist again today. He had done a reassessment again last week and doesn't think it's a rotator cuff tear. Today, he checked for a pinched nerve. Doesn't seem to be that, either.

Nonetheless, I'm feeling almost constant pain.

Yesterday, I was so beside myself I had to go for a walk because I was desperate to distract myself. I walked and walked and walked. I walked for almost an hour and a half, till I was getting quite tired and my arm was getting sore – this time from hanging at my side for god's sake! Although at least it felt a little more relaxed – I'd told the physiotherapist that my deltoid has been feeling all contracted for some time now, like when you go to a massage therapist and there's a knot, and they push and there's that crazy painlike feeling just before the knot releases? That's how my deltoid has been feeling. Only the last few days, that feeling has spread to my bicep. Then yesterday, the muscle in my forearm joined the fun. WTF???????????????

Yes, I cried.

Bloody freakin' shoulder.

I have an appointment with my rheumatologist next Monday to get her to check it out.

Course, watch: by next week, it'll be just fine!!!

Friday, November 12, 2010

Update

I know I haven't posted in ages.

It's been crazy at work and otherwise somehow. How is it possible to go into the office only 3 days a week and still be crazy busy? But there you go!

Here are some quick updates on what's up in my world:

Shoulder: killing me practically constantly + pain in deltoid and even bicep now at times. Going to go see family doctor in a week when she's back from vacation to see what the heck is going on.

Sleep: Went to sleep clinic. Doctor thought problem wasn't apnea or anything. Tried medication, which worked in terms of prolonging sleep till later. Excellent! Now sleep totally screwed up because of pain of shoulder. Meeting with sleep doctor again next week. Not so excellent. :(

Meds: Trying Leflunomide, aka Arava. Basically, when my benefits run out sometime next year, I'll have to apply for government benefits, and I'll need to have tried Arava. Really don't know the ins and outs of all this. Still need to research everything. I'm keen on it, cause it's way less expensive than Enbrel. Had to laugh at my pharmacist, though, cause when I went to pick it up along with refill of Methotrexate, he said something about it being expensive. I said, "Um, not compared to Enbrel!..." Let's hope it works as well as the Enbrel. Have to admit, I've been so busy, I haven't even researched how well it's supposed to work compared to Enbrel re joint damage, etc. Must find time this weekend to look into everything! And I mean everything!! Just started on it. Pills not injections, too – um, can you say bonus!

That's it, I think! Sorry for the rush!

Saturday, October 30, 2010

Injection Rejection


The shoulder pain continues. I have no clue why.

I had a corticosteroid shoulder injection Monday morning, which, one would think, would be working by this point.

I know the injections don't actually help with pain, they reduce inflammation. I also know that they can cause a flare, which indeed this one seemed to have.

By Thursday, there was a brief period of relief, and I though to myself, Yes, this is it, it's working!

Alas, it was not. I don't know ho to sit or lie. Or stand for that matter. Yesterday I went to watch my niece's riding lesson and it was bloody cold. Tried to put my left hand in my coat pocket, but that was a no go, BECAUSE IT HURT TOO MUCH!!! So then, on top of the pain, I ended up with white corpselike fingers because of Raynaud's, which in turn, is because of the rhuematoid arthritis. Perfect timing for Hallowe'en. Ah, it's a grand little world. (I did, by the way, have Thinsulate-lined gloves on.)

Again, I have no clue why the damned injection isn't working for me. They don't work for everyone, it's true, and, apparently, I'm one of those lucky few, as fate would have it.

Could I be one of those lucky few who win a lottery? Well, no! That would just be too much luck!

I had a systemic corticosteroid injection back in December of last year and that didn't work either. It did zip all. Nada. Zilch. Same for this. In fact, if anything my shoulder is worse off because I haven't done my physio exercises for a few days now.

Seriously irritated.

And getting a cold on top of things.

P.S. For those who are interested, the injection didn't hurt. It was my first joint injection and as far as I can figure, was a posterior glenohumeral injection, I believe. Since I'm not a doctor, don't quote me on that!! Piece of cake, though, especially if you've been injecting yourself and getting blood tests done left, right and centre...

Sunday, October 24, 2010

Warning!


Here, girls and boys, is why you should never do an Enbrel injection without icing beforehand!

The other night I got home, took the Enbrel out of the fridge, set my timer, figured I could jump in the shower, do my Methotrexate injection, then get the Enbrel shot done, all before getting dinner. Why not? The shots are a breeze now!

By the time I'd taken out my contacts and had my shower and gotten all the other stuff out for my shots, 22 minutes had elapsed. Hmm, 8 minutes for the Methotrexate injection? Sure! And, indeed, I did it – with 2 minutes to spare. Course that meant no time for icing my stomach. When I first started doing injections, I'd been icing my stomach for 20 minutes, but lately it's been 10, sometimes slightly less, so I figured, what the hell? So off I went with the Enbrel. I didn't even both with alcohol swabs for either injection, since I'd just had a shower, and I'd read somewhere (couldn't remember where, but I knew it was a reputable site) that soap and water were just as good as alcohol.

Bang! And it was done. There was a biggish blood drop, but that's happened before, and it didn't sting anymore than normal, so great!

Next day, huge bloody bruise!

I didn't make the connection at all until sometime later: no icing, big bloody bruise. Oh!!! No icing = big bloody bruise.

So, this week, back to icing for at least 10 minutes....

Saturday, October 16, 2010

Fatigue Takes Its Toll


The other day I slept in almost an hour past my alarm clock. That never happens. And I'm not exaggerating. It's the truth.

There have been a handful of times in the last decade that my alarm woke me up. Other than that, I always, always, always wake up before my alarm goes off. I have an incredible internal alarm clock.

Until the other day! I use my iPhone as an alarm; I have no idea how long it keeps going, but I know it's for quite a long time. But I just slept right through it. Goes to show you how fatigued and tired I am. Fatigued as in feeling totally worn out all day long.

I've always been a sleepy kind of person who loves naps, I'll admit that. But this is different. I wake up after sleeping all night long and could take a nap after breakfast. If I'm at home during the day, I usually do take a nap in the afternoon, but it's not a treat and a pleasure the way it was in the past, it feels like a necessity.

I don't sleep all night long, so that could be a definite cause. I fall asleep right away at night, but usually wake up four or five hours later and am awake for at least an hour to two hours (!), so that certainly doesn't help. That was going on before RA hit, but now it's way more firmly established.

It could be medications I'm on, like Methotrexate, as fatigue is a known side effect.

It could just be the crap RA! Fatigue, yes, is also a result of this crap disease. (Ha! Just like saying that word "crap"!)

And, of course, this past week, it doesn't help that my shoulder is still sore because of the ongoing tendinitis issue, and sleeping isn't supercomfortable.

Whatever it is, I'd say I'm getting a minimum of 7 hours of actual sleep 3 nights a week and at least 9-10 hours the other nights. Add naps to that, and the fact that I am getting to the gym at least 3 times a week for cardio workouts and going for long walks on the other days, and there's no way I should be feeling as tired as I am.

Am meeting with my rheumatologist on Monday for a regular checkup. Will ask what's up with this and report back!

For now, it's almost 10 in the morning and it's clearly naptime!!!!!

Sunday, October 3, 2010

The Conclusion: Shoulder Tendinitis

So went to see a  physiotherapist last Wednesday and he did an assessment and thinks I have tendinitis in my left shoulder.

The assessment, which involved him asking lots of questions and having me move my arm about in all sorts of directions, killed! My shoulder was incredibly painful for the rest of the day and night, and I slept like crap. I actually took some acetaminophen, which I haven't taken in ages because I just couldn't take the pain (I'm already on so many freakin' drugs, I don't really want to take more, particularly any which might, might upset my stomach but there you go...). I also iced my shoulder on and off all evening as instructed.

Luckily I got in for a treatment appointment Thursday morning. I was given some ultrasound, then heat. Then the physio manipulated my shoulder a bunch, basically jiggling it up and down a lot in the socket, which, surprisingly, didn't hurt at all, and massaged it very  lightly, then iced it. It felt a whole lot better after that.

This left shoulder has always been weaker. In fact, as I've mentioned before, my whole left side is weaker, since my right side is my dominant one. And the shoulder has caused me some very slight pain before, ironically enough, during the longer periods of time when I haven't done any strength training! But this amount of pain is very unusual and I have been doing strength training, so I can only suspect that RA has something to do with it. Call me suspicious, call me wrong, but there you go...

I've been icing the shoulder every couple of hours (when I remember!), as instructed, and I go back for another physio appointment tomorrow (Monday).

I hope we can nip this thing in the bud, so I can get back to normal life – and normal workouts!

Monday, September 27, 2010

A Pain in the Shoulder


My left shoulder is killing me.

It's been bothering me for probably the past three weeks. I think I aggravated it at the gym somehow and just haven't given it enough rest or something because, well, everyday life is getting in the way of that rest. You know. Things like getting dressed and sleeping and stuff.

Going to see a physiotherapist on Wednesday to see what he thinks. It was the shoulder that hurt like hell when RA first hit. But it's also the shoulder that can hurt slightly when I don't work out and my muscles start getting too weak, I think to support the joint.

Whatever it is, I'm getting really annoyed...

Friday, September 17, 2010

A New Chapter


It's going to be a crazy ride, folks! I've managed to land myself another job!!!

I've been in talks with the company for ages (since about two days after I was let go from my other job – and that felt good!), but I just officially started this week. It's with Canadian House & Home, and it's a freelance position with two titles, Editor, Special Interest Publications, and Consulting Editor. That essentially means I'll be the editor on the two special issues the company produces, as well as oversee some stories for the regular issues.

I'm absolutely thrilled! I'll be working with a great team and a great mag, three days a week for the most part.

That allows me to take care of myself. I'd like to take on some more clients once things settle down with this client, and I get a handle on what I'm doing for them. I'm looking forward to exploring the freelance life, but it's meant exploring things I know nothing about, like tax rules and getting an accountant, and getting used to tracking my mileage and keeping all my receipts. I'm also going to have to look into drug coverage through the government once my medical benefits through my old company run out.

Right now though, I'm just getting used to getting up early so I can get downtown on time! Last night I slept for almost 12 hours playing catchup! And while I'm at work and sitting at a desk all day, I'm determined to get out for 1/2 hour at lunchtime to move around and during the day to walk to people's desks when possible rather than just call them. Despite that, I was still really quite sore by yesterday, the third day at work this week.

Rheumatoid arthritis, I really would rather not be having a relationship with you!!

Thursday, September 2, 2010

Methotrexate Volcano


So twice now when I've done my Methotrexate injection during really hot and humid weather, a little bubble of the toxic stuff has come oozing back out of my body when I've withdrawn the needle from my leg.

Ewwwwwww!

And it's not as if I've injected it any faster than usual or anything.

Weird, no?

Tuesday, August 24, 2010

Seriously? You're Kidding, Right?


All I did was stretch in bed just after I woke up in the morning, and my knee gave out.

I could manage to walk, but my plan to do cardio and upper and lower strength workouts was ruined.

Still, I hobbled over to the gym, and got in the upper-body part of the workout.

Later in the day, my knee was perfectly fine.

Is it just me, or is RA a bit like a two-year-old child throwing random tantrums????

Friday, August 20, 2010

A Tale of Survival

 Recently I had a flare that lasted two weeks. Have no clue what set it off. It just happened. And in the same way, it just went away.

So when I was invited to an outing that involved sleeping in a tent for a few nights, I wasn't sure what might happen. Anything was possible!

So off I went, armed with a down duvet (haha – yes, I was the only person there with a down duvet! Long story short: I have no sleeping bag.) I had no bug spray, which was silly, given my response to bug bites (see previous post), but I'd tried to find eco-friendly stuff, with no luck. I figured if it got really bad, I could retreat indoors or borrow some from someone else...

The weather, which has been crazy hot all summer, ended up being rather breezy. I went swimming, and got chilled even though the water was warm, and then stupidly sat there shivering in the breeze instead of putting on warmer clothes right away.

It got cool at night, which was good, cause it kept the mosquitoes at bay. That didn't stop the ants or spiders or whatever decided to munch on me and leave me with over 30 bites on my right arm alone, and random other bites on various parts of my body, but, HEY, what else are anti-inflammatories good for but keeping down bug-bite swelling??

And the cool weather also meant it was very comfortable for sleeping for three of the nights. The fourth night, it dipped down to 8°C (WTF!!!!!), and, boy, was I glad I had that down duvet! Everyone else was freezing with their appropriate-for-camping sleeping bags! I just got chilled on the air mattress side of things, even though we had a fleece blanket on the mattress.

I was sure that between the after-swimming chilliness and crazy winter-like nighttime temps and the bites, I'd end up all sore and flaring again, but, no!

Nothing!

Nada!

As it turned out, I survived everything!

That's rheumatoid arthritis for you!

P.S. It was also my first time travelling with Enbrel! Done + done!!!!!!!

Friday, July 30, 2010

One Lovely Blog Award


I've been catching up on all of my blog reading and realized that Helen over at Pens and Needles was kind enough to give me the One Lovely Blog Award! Thanks so much, Helen!

Now it's my turn to pass on the kindness by giving other bloggers with the award – very exciting! So many of the great bloggers I follow on a regular basis and whose posts I love to read have already been honoured, so I'll keep my list pretty short and won't re-reward (so to speak), people.

Here goes:

Feelin' Swell: My Life with RA Squirrel is endlessly funny and her humorous take on living with RA always keeps me feeling positive about things, even when I'm feeling crappy.

All Flared Up: An Arthritis Blog Ditto Amanda, whose sarcastic take on her RA woes slays me every time! Every time!

Bionic Pony Cause she's also funny, plus she's Canadian and loves pie – who needs a better recommendation than that, I ask??

Project Jennifer Jenn has had rheumatoid arthritis since she was a wee babe – she was diagnosed when she was 9 months old – and I am in awe of her and her positive attitude. She's a true inspiration.

The Seated View Lene is an artist, philosopher, writer and, oh yes, blogger! Check out her blog and learn...

Dual Sport Life This dude just keeps on biking, no matter what, and that's amazing to me and a great lesson to us all.

There are so many other great bloggers and blogs out there – this is just a teeny-tiny sampling – but I can't say enough about how much all of you inspire, support and comfort me through this journey that is RA. Thank you, thank you, thank you!

:) Laurie

Wednesday, July 28, 2010

A-OK – For the Most Part

My hemoglobin count has improved, so yay!!

Now if this flare would just come to an end, I'd be very, very happy...

That's all.

Saturday, July 24, 2010

An Invisible Disability, a Chronic Illness and Me: Rheumatoid Arthritis

Today, July 24, BloggersUnite is asking everyone to take the time on to raise awareness about people with disabilities: People First: Empowering People with Disabilities is important and not just for the obvious reasons.

The World Health Organization defines disability as: "an umbrella term, covering impairments, activity limitations, and  participation restrictions. An impairment is a problem in body function  or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action; while a participation restriction is a problem experienced by an individual in involvement in  life situations. Thus disability is a complex phenomenon,  reflecting an interaction between features of a person’s body and  features of the society in which he or she lives."

Making disability even more complex is what is termed an invisible disability: one that isn't immediately apparent. Chronic illnesses like rheumatoid arthritis fall under this category. Add to that the intermittent nature of some of the symptoms of some of those illnesses and things are complicated even further.

I have rheumatoid arthritis, but I don't think of myself as disabled.

To look at me, you'd think I was fine. I can say this, though.

At my bus station, I can catch any one of four buses that drive past my street. Each bus stops at a different spot in the station, and those spots are strung out at increasing distances from the subway entrance. I used to be able to run for the furthest bus as I came up from the subway if I saw it waiting there. Now, chances are that's no longer possible: my feet usually hurt, and even if they're not actually hurting at the moment, running on hard pavement will make them hurt. If I see a bus, I sometimes walk toward it, but the buses often just leave. Sorry Mr. or Mrs. Bus Driver: I may look like I could run or walk a lot faster, but I can't...

I love to walk and often made the 25-minute trip home from the subway station to my place on foot, making sure to wear reasonably comfortable shoes, but managing regardless. Now, even with the most comfortable shoes, it's not always possible. Heck, the other day I walked down the street for dinner with a friend, a distance of no more than about 500 metres. My feet were hurting so I was taking it slowly, even though it was a very short distance. On the way back, my foot started hurting so much I couldn't help but limp badly. Sorry, car drivers: I may look like I should be able to walk faster through the intersection to clear that light, but I can't...

But I'm actually one of the lucky ones. There are others who have it much worse.

Nonetheless, to keep myself that lucky, and to keep myself from being incapacitated, I do a number of things:

• I shoot myself full of drugs once a week, drugs that yearly cost as much as a really nice new car, drugs that are used to treat cancer patients
• Every day, I top that off with a drug to prevent the side effects of the cancer drug, side effects like hair loss (tell that to the hair that washes down the drain each shower or floats around my apartment with the breezes), side effects like nausea (I keep candied ginger on hand to quell that – good thing I love ginger!)
• Every day, twice a day, I take a drug that eats away at my stomach
• Every day,  I take another drug that's supposed to prevent that but that may cause my bones to break instead
• Every day, to round that all out, I take supplements to protect my bones, my heart and my joints, and keep eye drops beside my bed, because the arthritis and the drugs can affect all parts of my body, including my heart and lungs and eyes, not just my joints

Can you say really crap disease??

I may look like I'm fine.

I'm one of the lucky ones.

Imagine those who are not.

Tuesday, July 20, 2010

Getting More and More Sore...

...and I'm not liking it one bit! I don't know if it's linked to the low hemoglobin levels, but we should have those results soon, I would think.

Had a look at the requisition form and my rheumatologist is checking everything iron-related under the sun:

• CBC
• ferritin
• Vitamin B12
• TIBC (iron binding capacity)
• TSH (thyroid stimulating hormone)

I guess the last one can affect your iron/hemoglobin levels – can't find a connection and am too tired to look further. Sorry!

I think she was running the usual AST and ALT liver tests again, too.

There might have been others, but that's all I remember...

Friday, July 16, 2010

Low Hemoglobin

Went for my regular blood tests on Monday and got a call from my rheumatologist's office today. The lovely receptionist (she's always so friendly and pleasant!) told me that the doctor wanted me to go in for some further blood tests because my hemoglobin levels are low, apparently.

Chronic diseases can cause anemia, appropriately and incredibly obviously called anemia of chronic disease, lol! That's what happens when ongoing inflammation means your body produces too many white blood cells and not enough red, and, therefore, not enough hemoglobin – to grossly simplify things. Here's another link that explains that the only way to treat this type of anemia is by treating the disorder that causes it (or in rare severe cases, through transfusions or drugs that stimulate the bone marrow).

So that could be what's happening, but let's hope it's just a wee blip on the lab's part.

So, back to the lab on Monday to get more blood drawn – not enough hemoglobin, so let's take some more out to make sure you've got actually got enough, and it wasn't all a mistake!

Just kidding! I do know it's necessary, just strikes me as rather funny...

Monday, July 12, 2010

Why I Hate Bugs


Last week I took two mini vacays: one east of Toronto, one west. Had a great time on both, just relaxing, lying around, reading, eating (lots!! including ice cream that tastes like roasted marshmallows!!), visiting with family – you get the picture. Spent a lot of time outdoors in the shade, since it was way too hot in the sun – we had a heat wave here in Southern Ontario, and I don't like the sun at the best of times, so I wasn't going to be lolling about in it.

During the day being outdoors was fine, but at night the biting buggies come out, and I hate them with a passion, mainly because they love me with a passion! My Italian relatives say it's because I have sangue dolce or sweet blood, and they must be right, since a group of us can be sitting around a campfire, and while others may get a bite or two or be ignored totally by those flying pests, I invariably end up with tons of bites unless I smother myself with bug spray (which I hate doing, especially any DEET-based chemical crap).

So I either cover myself up totally – not nice when it's bloody hot out – or give up and go inside. One night while out east, I did cover myself up – head and all – with a quilt because I didn't want to miss all the fun, and that worked pretty well, even though I looked like an idiot. Total bites: 1.

This past weekend, I wasn't so careful. The bugs weren't around initially, and I wasn't out that long once they did begin their reign of terror. I had on loose canvas pants, a T-shirt, sweater, shoes, socks and a rainjacket. I even put a seat cushion on the chair I was sitting on so the mean little critters couldn't bite my thighs or back (those suckers can bite through anything, I swear!). Total bites: 6.

One of them is pictured above. What is it? Who knows. Mosquito? Black fly? Tarantula?

Not all the bites look like that (thank god, the one on my face doesn't!). Some are more white looking and slightly swollen (the bonus of RA and anti-inflammatories: the bites no longer puff up like crazy the way they used to!). Some have red edges. It's like bug artwork...very designer-like!

And, no, RA has nothing to do with the reactions themselves. I've always reacted badly to bites. Or at least in my adulthood. As a kid I'd run around all summer long outdoors all day every day into the night well through dusk with no bug spray and didn't have a problem. I got bit, but not that often, and didn't react badly.

And people wonder why I freak out at the sight of a mosquito and won't stay outside...

Wednesday, June 30, 2010

Hair Loss

Yes, I've been losing hair again. When I started on Methotrexate, for a while my hair was coming out in the shower and gathering in a little clump that I'd have to kick down the drain. Not the best thing to do, I know, but, ick, disgusting! Why is that hair looks so fabulous on your head but is so absolutely sickening when no longer attached to your being???? Blech!

That hair loss finally stopped, thank god, but now Round 2 of the shower kick-downs has begun. And I've been finding loose hairs everywhere around my apartment, which isn't usual. OK, the average person does shed 25-100 hairs a day, but this is way more than that.

Why? I can only think it's because of the stress of being unemployed and worrying about things. I honestly don't feel like I'm totally freaked out about things – really, I'm not! – but, needless to say, the situation does have its emotionally trying moments. I had to go in to my old office to sign my final severance release – stress. I've been figuring out how I'll pay for five prescriptions for RA alone (one of which costs $23,000 a year) when my benefits run out  – stress. I've been thinking about how I'll take care of myself years down the road when I retire now that I don't have a pension in place – stress. You get the picture.

Result: hair everywhere! The technical term for this stress type of hair loss: telogen effluvium. The type that occurs because of the Methotrexate: anagen effluvium. Or, actually, if you read closely, the stress and the start of the new medication could both have caused the first type of hair loss... Whatever! Any way you look at it, I'm losing hair.

Not that anyone on the street would notice. A friend I met for lunch yesterday said she'd expected to see bald patches on my head from what I'd described, but, still, I know what's washing down my drain, and that's dramatic enough for me.

Yet, despite all that, it has been an exciting time. I've launched my new blog, A Capacity for Joy, this past Monday. I've already been approached about writing an architecture piece for a new online magazine based on one of my blog entries. I'm eagerly thinking about what new job opportunities lie ahead for me. I've spent time catching up with family and friends, and I've realized once again what a truly great support network I have.

I hope my hair realizes that, too, and settles down...

Monday, June 28, 2010

My New Blog! – A Capacity for Joy


Yes, I have neglected my posts here, I'll admit it. For two reasons: 1) I was negotiating a settlement with my former employer and didn't want to report on how I was feeling (more on that in another post), and, 2) I've been madly working on a new blog which I've now launched! It's called a Capacity for Joy and you can have a look at it –please do! – at http://www.lauriegrassi.com.

It'll give you a view into what I did in my work life, with a more personal spin, I hope, since I have no one to report to but me! I've been having such fun doing it. In addition to designing the header (above), I've been doing all sorts of other things I've never done before, or at least not to this crazy extent. Things like playing with xml code and Photoshop, making blue Twitter birds orange, and things I don't even really understand if I'm honest with you. I even hired a woman in Norway to make the images in my archives get bigger when you click on them (it' a long story...).

But I'm pretty pleased with the results so far! There are a few kinks to work out still, but nothing's ever perfect, is it? I hope you do check it out and enjoy it. Please feel free to comment, subscribe, etc....!

And I promise I will try my best to get back to regular posting here!

Tuesday, June 15, 2010

Paul Klee, Artist & Autoimmune Sufferer

I was working on my (hopefully soon to be launched) other blog today and realized that one of my favourite artists, Paul Klee, suffered from scleroderma, an autoimmune disease and, it is assumed, died from it in 1940 at the age of 60. Too short a life – damn autoimmune diseases...

He produced over 9,000 works of art in his lifetime. Here are just two.

Before the Gates of Kariouan/Vor den Toren von Kariouan, 1914


Once Emerged from the Gray of the Night/Einst dem Grau der Nacht enttaucht..., 1918

Friday, June 11, 2010

A Neurologist's Thoughts

Saw my neurologist yesterday for my regular semi-annual checkup re the migraines. It was the first time I'd seen him since the RA diagnosis. I told him that I'd only had one migraine since the RA started, but that over the last few months I have at times had odd visual disturbances: what looks like black horizontal lines across my entire field of vision. I said I'd mentioned them to my regular doctor and optometrist, both of whom I'd seen in the past couple of weeks, and that they thought they could possibly be migraine auras, even though they never lasted for more than a minute to a few minutes.

My neurologist thought that was possible, that they were auras trying to come out, so to speak. He also thought that all the anti-inflammatory medication I was on for the RA was having a suppressing effect on the migraines, and that there have been studies linking inflammation and migraines. He also said that there are cases of patients being diagnosed with other conditions, like cancer, whose migraines go away.

He didn't say this, but is it a case of a body knowing that you can only handle so much? Now, if only life was like that, too! Hmmm!

Now, I just need to start really trying to wean myself off my migraine meds to see what happens...I really just do not need any more crap in the form of pain or anything right now. But I'm game to slowly, slowly give it a try. And he's such an awesome doctor to make me feel like I'm the one in charge of what to do when and to trust me to do what's right. You gotta like that!

Tuesday, June 1, 2010

Pics from the Arthritis Walk

Here are some pictures from the Arthritis Walk. You can see how pretty the grounds are where the one kilometre walk took place!



Yes – they are my sisters!!

Monday, May 31, 2010

Arthritis Walk Fun!


The Arthritis Walk was yesterday, and our Frozen Woman team raised over $3,694!!! I'm so thrilled that everyone came out, and that they did such a wonderful job raising money and donating money themselves. I had no idea that we'd do so well.

We were in the top 10 teams in Toronto thanks to our efforts, and my younger sister Jamie (yes, she's a tad competitive) already has big plans for next year, involving raising money with a hot-dog stand, T-shirts, etc. You go, girl, I say! (Me, not quite so competitive, lol!).

It was the perfect day: sunny and clear, and while it was on the hot side, there was a lovely breeze, and we walked the beautiful park route (yes, we walked multiple loops of the 1km route rather than the city-traffic 5km route, which we'd signed up for, because I wasn't sure how I'd do and with the 5km route, there's was no way to get back if you couldn't do it). It was a good thing I decided to do that. My hips were sore-ish, but when we got back to the car after the walk, my legs were actually shaking. Same thing when we got back to my place. I felt fine other than that, and it wasn't dehydration, so I'm not sure what was up with that. They were still kind of shaky for some time.

Anyway, the organizers did a fabulous job. There were muffins and yogurt to snack on and coffee and water to drink before the walk start, water and yummy green tea drinks during, and after there was a barbecue with hamburgers (veggie, too!) and hotdogs and all kinds of fruit. Music was playing and added to the party atmosphere.

I had such a good time with my family and friends (many hugs were exchanged!).

All in all, a fun, fun morning!

Saturday, May 15, 2010

Hey All!

Thanks for all your good wishes recently.

I am still around.

Have just been busy – crazy busy – trying to get things settled on the work front.

Have also been transitioning all kinds of things, things you never think about really when you work full-time. Stuff like my contacts. I had many in my iPhone, but not all, so that was a bit of a mad dash.

Then there was my twitter account. I tweeted on a work account and had over 1,000 followers, but no more. So the first week I was off, part of my time was spent opening up a new Twitter account (you can follow me at @LaurieGrassi!), following those many followers with the new account and letting them know where they could now find my personal tweets. (If you're not familiar with Twitter, that's probably all Greek to you!)

Next: researching new software for my computer. Some of what I had was pretty old, but sufficient, because, well, I didn't actually really do work on it – I did that at work...

Also, I had to research some tax implications for my income this year. Fun, wow! My eyes glazed over while I was doing it, but it was necessary.

And looking at things like how to reduce costs, and how to pay for my medications if I lose my insurance and I have to get the government to cover me, etc., etc., etc. Which, in the whole scheme of things, is my biggest concern, along with getting another job, of course.

Good lord, I'm having a fun couple of weeks. But at least I'm keeping plenty busy!

Wednesday, May 5, 2010

2010: Annus Horribilis


Jan. 11, 2010: diagnosed with Rheumatoid Arthritis

May 4, 2010: let go from my job

They say bad things come in threes.

I shudder to think what could come next...

Tuesday, May 4, 2010

Drip, Drip, Drip Goes My Nose


Ever since I started taking both Methotrexate and Enbrel I've had a drippy nose. Not constantly, just all of a sudden, out of the blue, my nose starts running. It's not stuffy or anything. There aren't any symptoms other than the sudden dripping, like a faucet being turned on then off again, multiple times a day.

Rhinitis is the actual medical term for the condition, and it's one of the adverse side effects of those two medications.

When I mentioned the drippy nose to my rheumatologist at my last visit, she queried, "Allergies?"

I said, "No. I've never had any seasonal allergies, plus I've had the drippy nose ever since I started taking the Methotrexate and Enbrel back in the winter." In other words, even though I know you can develop allergies as an adult, it didn't just started with all the spring pollen floating around in the air.

But, oddly enough, in the last couple of days, the drippy nose seems to have been on the decline. My RA symptoms overall have been better, too.

Is there some odd connection? Drugs working better, body getting used to them, less drippy nose?

Ahhh, the mysteries of RA!

Thursday, April 29, 2010

The Right Way To Do a Methotrexate Injection

I did my injections last night, and, yes, I did hesitate again over the Methotrexate one, but not as much as last week (for more on that, see a couple of posts back).

I considered looking away and doing it, but thought that wasn't such a good idea, and then I just did it! No hesitation, just darted it in and, of course, it didn't hurt at all!

Nothing, not even any sensation at all!

And that, ladies and gentlemen, is the right way to do a Methotrexate injection!

Now I just have to keep doing the Methotrexate dart! Just do it, do it, do it!!!

Tuesday, April 27, 2010

A Visit with My Rheumatologist

Today I went to see my rheumatologist for the first time since February.

I told her that up until last week, I've been feeling progressively worse, and that the week before last had been the worst week since I'd been on heavy-duty meds and, in fact, I had been going to tell her that I thought the meds weren't working very well. But last week I had a really good week (figures! just before I go to the doctor!), so that's changed.

She checked me over and I have no inflammation.

My bloodwork's been fine.

Confirmation that I have Raynaud's disease – check.

She asked about infections – nope, none.

When I mentioned my drippy nose, she said, "Allergies."

I said, "No. I don't have allergies, and it only began when I started the Methotrexate and Enbrel and that was in the winter."

When I mentioned pain, she asked where, and I told her. I said I've been having more pain now overall than I had, other than right at the beginning. And I told her about getting back into exercising on a regular basis.

She said that the pain was from exercise and muscle soreness and getting back into it.

I said, "No. This pain is from RA. I know what exercise pain feels like and this is different. I'm on the elliptical, and first my left foot hurts, then my right foot, then my left knee starts, then my left elbow. It's pain because of the RA."

Not to mention I have the pain all the time and had it before I started exercising.

Surprising response from her, I think (although, in the interest of full disclosure, I hadn't said exactly when I started exercising and when – exactly – I started having the pain).

Don't get me wrong – I like my rheumatologist. She immediately launched an aggressive attack on my RA in term of meds, etc. She answers my questions. She responds to my e-mails. She renews my prescriptions without making me come in for an appointment.

I just think it's odd she thought my pain was the result of my renewed exercise.

Of course, the appointment was way too short, and I thought of all sorts of things I should have said after. Not things I wanted to cover off: I had all my questions, and we went over them all, and I got all those questions answered and got all the prescriptions I needed renewed. What I mean is things I thought of in response to the conversation. Things like, if the exercise is the cause of the pain and not the RA, what explains what happened the other night? It was the Thursday night of that bad week. I was just sitting at my dining table, not moving my feet at all, and I'd been there a while. All of a sudden, I felt a sharp pain in my left foot, so sharp I gasped out loud and then started crying.

That's not from exercise. That's from RA.

Monday, April 26, 2010

My New Toy: The Kobo E-Reader


I just got a Kobo e-reader today and am so excited! It's a Canadian e-reader (it'll be on sale in the U.S. in the summer) and so has access to all kinds of books here in Canada that American e-readers don't, plus it's one of the smallest, lightest e-readers out there, which should make my body very happy. My elbows, hands and wrists have been getting quite sore of late when I've been reading, so this should ease some of that discomfort.

I have to admit that I'm still not quite sold on the idea of not having actual books in hand, but for some books, the e-reader will be just fine. And Kobo books are device neutral, which means I can even read them on my iPhone if I should happen not to have my Kobe e-reader with me, and I can also download to the e-reader all kinds of books from other sites, not just bookseller Indigo/Chapters, which is where you can buy the Kobo in Canada.

And total bonus: it was free! My new boss had gotten it at a press event and wasn't sold on the whole idea, so it was over to me. Sweet!!! And it comes pre-loaded with 100 classic books. I am beside myself!

Now I'll just have to not go nuts buying books! I've always thought bookstores are dangerous places: I can rarely get out of them without spending money, and now I don't have to go anywhere to get books, cause I can just go online and download them.

Scary, very scary!

Wednesday, April 21, 2010

Methotrexate Dart



I have no idea what's going on, but tonight I just couldn't seem to bring myself to do my Methotrexate injection at first.

I'd had trouble loading the syringe – this is the second time a syringe has leaked on me.

The first time, I started off thinking I was being clever: I'd noticed that I'd often get a big bubble in the syringe, so I decided to do things differently. I'd just been sticking the syringe in the vial, then inverting it and drawing the medication, which is what my rheumatologist had shown me to do. But she'd also given me some written instructions, and on those it said to draw half a dose of air into the syringe first, inject that into the vial, then draw the medication into the syringe. So that's what I did.

Ha!

Methotrexate everywhere! It all started dribbling down the syringe onto my hands and then the floor.

OK, not a good idea. Why it didn't work, I have no idea. So I've never done it that way again.

Tonight, I just had a big air bubble I was trying to get rid of. I know the instructions say bubbles really aren't that big a problem, but I still wanted to get rid of it, so I flicked the syringe and injected the Methotrexate back into the vial a couple of times, then drew it back out, when, tada!!, leaking again!!!!

Then the difficulty with the Methotrexate dart (hence the post title). Lately, I've been hesitating when I've gone to dart the syringe into my stomach. Not by much, but still.

Tonight, my brain froze and so did my hand. Stomach was all pinched and ready to go, brain and hand did not want to cooperate.

I seriously counted to 10 about 5 times, each time saying, OK on 10 I'm going to do it!!

Finally, I did do it (because, really, the alternative is what? pain? stiffness? not moving at all?). But I did it slowly, and I had to puncture the skin consciously – which I'm sure you'll all agree is not the preferred mode of injection – but I did it.

What is up with that?????????????????????????????????????

Monday, April 19, 2010

Report on Exercise

Illustration courtesy of Everyday People by Cathy Thorne

OK, here you go! The results of my little exercise study!

How do I feel? Well, I've been feeling quite sore the last few days, except today.

Is that because I've been exercising or because the meds aren't working? I can't help but think it's the latter to be honest – especially since I'm not sore today. It's something I started suspecting even before this little experiment began. Not sure if I mentioned this already (although I think I did in my Pain post): on Mondays and Tuesdays, it's been feeling like the meds were wearing off. Now it feels like they're not kicking in again till Friday nightish (I do my injections on Wednesday nights), and then not kicking in as well as they used to.

Do I have scientific proof of that? Of course not, so take it as you will... Or maybe it was a real flare this past week. What do I know? Not a lot, obviously, as I'm so new to all this.

All I can tell you is that, despite the increased soreness, I feel better for the exercise. It feels good to be moving more again and feels good, in some small way, to be building up some muscle mass again.

A surprise, though: I still feel way crazy fatigued – something that I thought being off for two weeks and exercising would help with. Not a chance. I blame it on the meds (more on the fatigue in another post).

Below, for each day I exercised, I noted what I did, how I felt before, during and after, and provided links where possible to images of the exercises I've been doing, so you know exactly what I've been up to. And at the end is a list of stretches I do, depending on the exercises I've done (it might be incomplete, as I couldn't find links to everything). I apologize in advance as it does go on a bit, but it's there for those of you who want all the deets...!

P.S. It's interesting to note that my left side is the one that's causing the most problems for me in terms of the RA. All the time that I've been working with my personal trainer (which I've been doing for years now, pre-RA), we've recognized that my left side is definitely my weaker side. I don't think you notice that sort of thing in day-to-day life, you just compensate for it unconsciously – things like stepping up on a chair with your dominant leg when you want to reach something high or always picking up something heavy with your stronger arm. Once I started doing strength training on a regular basis with a trainer who forced me to use both sides equally, I quickly realized how freakin' weak my left side was in comparison – insane! So we worked each session to address the inequality. And now I can't help but think that the pain and soreness I'm feeling on the left side is a result of that greater weakness...

WORKOUT 1, Friday
How I Felt Before Started off feeling good, joints felt quite good overall, some soreness in left foot toes, but overall just some minor aching in various places.
Cardio 20 minutes elliptical level 1
Strength 3 sets 7.5 lbs biceps curls, 50 lbs lat pulldowns, 50 lbs triceps pushdown, ab crunches
How I Felt During Fine. Some soreness in feet, but nothing at all to be concerned about other than momentarily.
How I Felt After Good!

WORKOUT 2, Sunday
How I Felt Before Somewhat achy, sore in feet, knees felt loose, hips aching vaguely last night, elbows sore
Cardio 20 minutes elliptical level 1
Strength 2 sets 7.5 lbs biceps curls, 50 lbs lat pulldowns, 50 lbs triceps pushdown, oblique crunches, 10 lbs dumbbell side bends
How I Felt During Elliptical was good to start (music made me want to go faster, but am keeping it slow because haven't done anything consistent over last 4 months), but about 10 minutes in, my feet starting aching more. For the last two minutes or so, they hurt quite a bit (not killing me, but uncomfortable) + my left elbow was unhappy, too. Strength stuff went quite well, although I only did 2 sets because once I started, I realized my muscles were tired, even though they hadn't felt sore or anything before.
How I Felt After An hour or so after workout, felt really good! Very little achiness, which is saying something! Felt great for about two hours – almost as if all my joints had been lubricated + I was almost back to "normal." After that, effect wore off + soreness/achiness/"looseness" started setting in again. My hips were somewhat sore that evening/through the night.

WORKOUT 3, Wednesday
How I Felt Before hands + left ankle kind of stiff, otherwise pretty good
Cardio 23 minutes elliptical level 2
Strength 3 sets 7.5 lbs biceps curls, 50 lbs lat pulldowns, 50 lbs triceps pushdown, ab crunches, 10 lbs dumbbell side bends
How I Felt During While doing elliptical, about 6 minutes in, right foot started hurting, then stopped after a bit. A few minutes later, left foot chimed in. At about 13-minute mark, right foot started up again, along with left knee – they hurt quite a bit + wasn't sure if they'd let me get to my target time (20 minutes), but I kept going + they soon stopped hurting. Then left elbow started aching a wee bit + left foot again. The whole thing was like a day with RA – random joints chiming in now + then, with some more problematic than others. Strength stuff felt fine.
 How I Felt After Fine – not as exhilarated as last workout, but not worse off than before. Some workouts are just like that!

WORKOUT 4, Thursday (strength session with my trainer)
How I Felt Before Legs felt "loose," left toes felt sore.
Strength 3 sets ball squats, single leg raises (while lying face down on exercise ball), straight leg raises (while on side with hip in extension), supine glute bridge with hip abduction (I did it without the band)
How I Felt During OK; left toes hurt, my glutes felt the pain during the bridge exercise – they haven't done that much work in a while, but it was good to feel that!
How I Felt After Legs felt pretty immediately loose again, toes weren't as bad as before.

WORKOUT 5, Saturday
How I Felt Before The day after trainer workout, glutes + quads seriously sore! Not surprising, seeing as I've done no lower-body strength workouts in months!! Balls of feet have been really sore last 2 days when walking for any distance; hands + left elbow sore.
Cardio 20 minutes elliptical level 2
Strength 2 sets ball squats, straight leg raises (ditto), supine glute bridge with hip abduction (no band) – oops! forgot the single leg raises!
3 sets 7.5 lbs biceps curls, 50 lbs lat pulldowns, 50 lbs triceps pushdown, ab crunches, 10 lbs dumbbell side bends
How I Felt During Right foot really started hurting about midway through. I try thinking about good-looking men in the hopes it will help (just read Globe and Mail article in morning about connection between reduced pain and thoughts of something pleasurable).
How I Felt After Alright. Not the exercise high I like, but still good for having done it.

WORKOUT 6, Tuesday
How I Felt Before Legs felt loose, which is never good sign – those days are usually bad ones.
Cardio 20 minutes elliptical level 2
How I Felt During Feet hurt, elbows were sore, knees felt loose, neck felt tight, I felt unenergetic + blah.
How I Felt After Not a great evening: feet were sore, particularly left toes, which hurt. Hands, left elbow, knees, neck were sore.

WORKOUT 7, Thursday (trainer) 
How I Felt Before So-so. Yesterday was injection day + was feeling pretty sore + achy + today left foot toes were sore + left knee felt like it might kick up a fuss.
Cardio 25 minutes elliptical level 2
Strength 3 sets arm punches 10 lbs (lying with head + shoulders on exercise ball arms at side elbows bent "punch" arm straight up into air), elastic band triceps kickbacks, 20 lbs two-arm rows (I used a dumbbell), 5 lbs draw-the-sword, exterior rotator cuff (one caveat: only move as far as you can. In the image, the girl has her arm out almost 90°; I can barely move mine 10°, but that's as far as it goes, so that's as far as I push it!)
How I Felt During We concentrated during the strength part on upper body (did the cardio on my own), and focused on keeping my form, since left elbow felt rather rebellious, like it wanted to crap out on me, but it hung in, so that was good!
How I Felt After Good for getting through with no joints causing major problems. Still feeling rather sore, but think that's due to the drugs not taking full effect yet, rather than anything else...Evening was another story. I hurt. No other words to describe it. Think drugs aren't working the way they should be. Or exercise is adversely affecting me. Not sure which. Bloody hell!!!!!!!!!!

WORKOUT 8, Sunday
How I Felt Before Sore. Have been very sore the last few days. And stressed, which is why I decided I so needed this workout. (Family – can you say stress???)
Cardio 25 minutes elliptical level 2
How I Felt During Surprisingly good, considering how crap I've felt during last few days. Not sore at all really!!
How I Felt After Still stressed but not quite as bad. Neck feels sore, so I'm sure to stretch it out.

WORKOUT 9, Monday (trainer)
How I Felt Before Good!
Cardio 15 minutes elliptical level 2, 10 minutes level 3
Strength 3 sets ab crunches, hip extensions, torso twist with medicine ball (important to keep knees aligned!), dying bug, 1 set supermans (done on 2 mats for extra cushioning)
How I Felt During Good. Right knee whining a bit, and left foot as usual, but fine otherwise.
How I Felt After Happy!

STRETCHES
Glute stretch; quadriceps stretch, shoulder stretch, triceps stretch, hamstring stretch, calf stretch, neck stretch

And there you have it, ladies & gentlemen!

Friday, April 16, 2010

Getting Better & Fun with Westies


Went to visit Gail, former editor of Style at Home, while I've been on vacay. A big highlight of seeing her is getting to play with her two Westies, Tilly and Clara.

The last time I was at Gail's place was for our annual Christmas visit over the holidays. I always pop in to see her then, but this year I wasn't feeling very good at all. RA was in its first month of working its black magic, I hadn't been diagnosed yet and was only on anti-inflammatories, and I was super-stiff.

Needless to say, there wasn't much playing going on with the two white cutie pies! I just sat in a chair and touched their heads as they passed by...

This time, the visit was so much more fun. I could sit on the floor – woohoo! Crossed legs weren't happening – still too uncomfortable to sit for any length of time like that now – but I could sit with my legs out in front of me, and the little munchkins were very excited!! And when I lay flat out on my side (that would have been so impossible the previous visit), they were absolutely beside themselves! They ran around head butting me, jumping about, grabbing their little toys to show me, and were totally overcome with doggie joy. I was pretty overcome myself with happiness.

Have I said before how much I love animals???

Such an improvement over the last time!

Below is a shot of one of them with one of their toys (hard to tell the dogs apart unless I can see the colour of their collars!). So cute, no? Clara, the oldest, always has to show me her stuffed hedgehog the minute I arrive. Haha! Just love those puppies!

Wednesday, April 14, 2010

Passing It On: The Sugar Doll Blogger Award


I was so surprised to find that Lana over at Living It, Loving It just suggested I receive the Fabulous Sugar Doll Blogger Award.

To continue the fabulousness, I'm supposed to let you know 10 things you don't know about me (hmmm...!) and suggest 5 other bloggers (that's the easy part!). So here goes!

10 Things You May Not Know About Me

1 I have many nicknames, some dating way, way back: Larry, Luigi, Algae, Lor, Lurleen, Leo, Dixie and I'm sure others I'm not even aware of (!).

2 I wanted to be a vet or marine biologist (shades of Jacques Costeau!) when I was growing up.

3 I love animals – sometimes I think more than people...

4 If I had to pick, I'd go for British over American television.

5 I was a bookworm growing up.

6 I never paint my fingernails colours, only my toes.

7 I love to travel but hate to fly – not because I'm scared, but just because I find it so bloody uncomfortable (and that was before the RA diagnosis!!).

8 I was meant to be rich (something obviously went seriously awry!).

9 I speak some German, Italian and French – enough to get by day-to-day, but not at all fluently.

10 I don't hold grudges, but I do obsess about things.

Passing It On

Here are my picks for 5 other bloggers without whom my RA journey would be a much lonelier one. They keep me company, give me support and make me laugh. Thanks so much, ladies!!

1 Wren at Rheumablog – could there be anyone more supportive?

2 Helen at Pens and Needles – just the cheer I often need, and she's Canadian!

3 WarmSocks at Itis – another great support in a cold RA world.

4 Mariah at From This Point. Forward. – a law student who makes me laugh and props me up.

5 Bionic Pony at, yes, Bionic Pony! – a funny Canadian RA'er.

Check them out! You're sure to enjoy their blogs! And thanks, Lana!!

Saturday, April 10, 2010

It All Comes Down To Feet


When I got RA, my feet were super painful, so I started wearing a pair of slip-on runners (above right) around the house, because they provided the most support/cushioning for my feet. After quite some time wearing those runners, though, it occurred to me that that they might not, ultimately, be the best thing for my feet.

Why, you ask?

Well, I'd just been reading an article about how barefoot running is actually better for your feet than running in shoes that have all kinds of artificial support. I can't remember what exactly the article was, but here's a link to one from Science Daily that explains it even better I think. Daniel E. Lieberman, professor of human evolutionary biology at Harvard University, is the scientist behind the study that came to the conclusion, and he says, "Our feet were made in part for running." They were also made in part for walking, and walking without shoes, so by artificially supporting them with my runners – heavy ones at that – it occurred to me that fateful night (cue melodramatic music!) – that I might not actually be doing them, or my joints, any favours.

So once again, experiment time!

I got out my regular slippers (above left) and started wearing them. They might look like it, but they're not actually those great big huge sheepskin slippers; they're quite thin, but warm and soft. They weren't as comfortable as the runners at first, and I had to walk slower because of that, but we're just talking around my apartment after all.

Lo and behold, over the next few days, my feet slowly started feeling somewhat better!

Since then, it's sans runners pretty much. Don't get me wrong: my feet still hurt at times, and let's face it, I don't doubt that much of the improvement I'm feeling in my feet and elsewhere is due to the drugs I'm on. But there was a marked enough improvement over a short enough period of time when I stopped constantly wearing the runners at home that I can't help but feel the improvement was down to that.

Some days more than others my feet still feel like they need some extra lovin' – an extra little cushioning at the bottom, they're so sore, so I try to wear shoes/slippers that accommodate that. For instance, yesterday I went out to do a few errands, and the soles of my feet really hurt for some reason, despite the fact that I had been wearing my über-comfortable Rockport boots, so when I got home, I put on some flip-flops I have. They're quite cushy, but flat, so no support, so they're perfect for those damn-my-feet-are-achin' days.

Life with RA: in the end, ya gotta do what ya gotta do!

Friday, April 9, 2010

Macarons, Macarons & More Macarons!


Last night I went to see my friend Leotard and her pet parakeet Tip (above). If you've been reading this blog from the beginning, you know all about Leotard, how she got that nickname, the fact that she's French and owns our horse, Lex.

I love Tip, who's very affectionate when you get to know her. I babysat her at my place once for a few days, and even though she had eggs at that point and spent most of her time in her cage, she did fly out onto my shoulder and wanted me to scratch her neck and watched me cooking (I use the term loosely, of course, crap cook that I am!).

The latest scoop on Leotard is that she's obsessed with making macarons, specifically pretty pink raspberry ones with white chocolate mousse filling. And I am one of the happy recipients of her macaron-making endeavours, along with Leotard's boyfriend Mark! I think we're all doomed to get fat in the process! Probably not the best thing for me at this point (and one of the reasons why I'm detemined to get to the damn gym!), but, hey, you only live once and eat so many macarons!!!

Her latest attempts, based on a recipe from the famed French pastry and chocolate shop Ladurée, are pictured below. You can see why I'm a happy victim!


P.S. You'll note Leotard's clever coordination of her jacket with the colour of the macarons?? Those French, eh!! What a sense of style! Haha!

Sunday, April 4, 2010

Spa Days


I just started two weeks of vacation – or staycation since I'm not going anywhere – and I kicked it off with a pedicure yesterday. I hadn't been planning to get one but was out for a walk in my neighbourhood and passed my local mani/pedi place and popped in on the spur of the moment.

I haven't had a pedicure since RA hit. To be honest, I've been a little scared to get one since my feet have been so tender. But they've been feeling somewhat better lately, and the weather has been awesome here, so I decided to go for it. I just told the pedicurist to please be careful, that my feet were sore, especially the left one, and she was great about it. I love getting pedicures – they're my favourite spa treat. I love having my feet done, I love seeing my toes painted afterward, and those pretty, pretty toes basically last for two weeks, so they're worth every penny!

Tomorrow, I continue my spa treats with a visit to a spa that has different water pools – a salt pool, hot tub and cold plunge pool. There, I'll be getting a head-to-toe glow treatment, including a facial and hair conditioning, plus a 90-minute massage. Woohoo! I am so looking forward to lounging around in the pools (except maybe the cold one), then getting the treatments.

I can already feel myself destressing, and that's pretty much the point of this vacation!

Friday, April 2, 2010

To Exercise Or Not To Exercise


I've been trying to figure out desperately whether or not I should be exercising and how much and what exactly I should/should not be doing. I have RA in multiple joints and am on Enbrel/Methotrexate but have pain/aches many days. However, from what I can tell, other than maybe my little left toes, I don't seem to have inflammation anymore.

Back when I was first diagnosed in January, my rheumatologist said exercise was OK as long as it didn't hurt. Using that definition, exercise is pretty much out right now for the most part (and I have to admit, other than that brief question/answer, I haven't discussed it with her since then).

But there's a lot of controversy on the subject.

Many sites on the internet that I can find recommend gentle stretching exercises or yoga. This WebMD link mentions that when regular exercise are painful for joints, you can try isometric exercises. But for someone like me, who has many joints that are painful most of the time, that means cardio exercise that actually gets your heart rate up is pretty hard to achieve. And that's exactly the sort of workout I need right now. I've been having trouble sleeping, and from past experience I know that cardio workouts will help with that and also help me feel better mentally.

Swimming is also recommended for those with RA, but that means getting to a pool and, for me, time is of the essence. When you're as tired as I am already, the thought of getting up at some ungodly hour to drive to a pool is not appealing, to say the least. Not when the gym I belong to is right across the street and offers readily accessible exercise options...

On a recent Rheumatoid Arthritis Warrior post on exercise, DadwithRA commented that he thought that the arthritis community in North America takes a more conservative viewpoint toward exercise than they do in the Netherlands.

I've been doing research trying to track down some scientific data to try to explain the difference in tack taken re exercise between the two communities. Here's a link that outlines a study undertaken by a doctor at Leiden University in the Netherlands that I found very interesting.

And here's another more detailed study.

I've been trying to find more links, but, most of the Dutch ones are, well obviously, in Dutch! If I find more in English, I'll add them to this post.

It seems to me odd that there should be two such differing viewpoints. Then again, maybe not. Half the time (and that's just a turn of phrase, not a scientific measure!) doctors can't even decide if someone has RA. So why should it surprise me that they can't agree on whether or not exercise is good or not for someone who has RA? And "active" RA is another thing, and how you define that "active" RA is yet another...So you see the problems that arise.

All I know is, I feel like crap from the RA anyway. Now I'm really feeling like crap mentally, too, and the lack of sleep from that is wearing on me. So, as much as I'm really a lazybones and am not that into exercise and never have been, I love the way it makes me feel, I love feeling fit and strong, and I'm going to do my damnedest to get to the gym and workout as much as I can (without straining my sad, unworked, sorry-ass muscles!) over the next two weeks while I'm off work.

I'll report back and let you know how it goes and how I feel! Consider it my own personal little RA study!