Enbrel & Toblerone Bars

 

So I've had a reaction to my Enbrel shot from Wednesday night – just some slight redness and soreness. It's the first time I've had a reaction since I started the shots five weeks ago.

It's also the first time I haven't had a Toblerone bar after having the shot.

A coincidence? I think not!

Ch-ch-ch-changes

I've been sick (more than the usual, haha!) the last few days, and while I've been lying around, I've been thinking about some of the changes I've made in my life/apartment since getting RA.

Here they are.

I…

• bought cordless phones so wouldn't miss calls (running to answer phone + sore feet = not going to happen!)

• added non-slip mat (extra-soft) to tub

• switched bath towels from huge (+ heavy!) bath sheets to smaller more manageable ones

• changed tops on prescription bottles from childproof (read: impossible to open) to easy-open

• put cushion on wooden dining room chair

• added extra seat cushions to couch to up comfort factor

• dry towels, sheets, etc., in laundry room dryer instead of hanging to dry upstairs in apartment (don't like environmental impact, but hands/wrists just aren't up to weight of laundry basket filled with wet laundry)

• drive to work for now (ditto re environmental impact, but feet aren't always up to twice daily bus/subway commute, nor is body – am wiped by end of week as it is)

• drive lots of places, whereas before would walk/bus/subway it lots of places and save car for long-distance trips to see my horse (he's not actually mine, but Leotard's, and I haven't seen or ridden him since November :( ).

• keep Thinsulate-lined gloves in car in case my hands get cold because of Raynaud's and usual leather gloves aren't enough

• eat lots more veggies

• eat lots more Toblerone bars (obviously need to cut back on this + add more of previous item!)

I'm sure there are more things, but I'm too tired to think of them, physically and mentally.

I'm trying to remain positive about everything, but, truth be told, I'm finding it hard right now...I think time off is in order. I have vacation days I need to use before May 1, and I'm going to at least plan to book them so I have something to look forward to. Don't know what to do (don't really want to spend any money), but need to do something nice for myself I think!

Fear Factor

I've just been posting a comment on Bionic Pony's blog about feeling light-headed today before my blood tests and my fear of blood – my own blood, that is! Yes, despite the fact that I cope with needles just fine, the thought of my own blood is a problem for me.

It all started in high school when I had the brilliant idea to donate blood. A friend decided to come along, and as we waited, she started getting really nervous. I was like, "It'll be fine!" But when we got in, they got about a 1/2 pint out of me when I started feeling faint, and they had to stop. Meanwhile my friend was absolutely fine – go figure!

Now, every time I see my blood (note I say "my" not "somebody else's"!) my brain starts screaming, "Emergency, emergency!"

I've been known to feel faint when I get a nosebleed. It's something I hate about myself. It feels so, well, weak and illogical. I mean, I know I'm not going to die when I get a nosebleed. But somehow, some primeval part of my brain isn't convinced of that fact.

And I am OK with other people's blood (so egotistical, no? haha!). Although I've never been around masses of blood, I have been at five births (my two nieces, nephew and the two kids of a friend), and seen various nosebleeds, minor cuts, etc.

What to do, what to do?

P.S. Actually, despite my comment on Bionic Pony's blog, blood tests usually aren't a problem for me; I just look away. But today I was just feeling particularly hard done by: Yesterday I had a dentist appointment to prepare a tooth for a crown. And while there wasn't any pain involved (the tooth in question has no nerves), it was exhausting (I ask myself, How can lying in a dentist's chair for four hours be exhausting? But it was – I was wiped by the end). And, so, today, I was just fed up with being poked at and prodded, was feeling sorry for myself, and my brain started getting the better of me. Mind over matter, I swear, mind over matter – in this case, to my detriment.

Enjoying the Olympics

Got through my shots in less than 10 minutes tonight!

It was my own version of an Olympic event. Ha!

OK, not really. I just decided to do them right when I got home, rather than wait till closer to bedtime and be kind of nervous all evening, having them looming over me.

So as soon as I came home I got the Enbrel out of the fridge, set my stopwatch on my iPhone and got everything ready: sharps container, alcohol swabs, cotton balls, Methotrexate, syringes, ice pack for deadening my stomach, blah, blah, blah. (You see how blasé I'm becoming? Good, no?!)

Then, once I'd iced my stomach for the obligatory 20 minutes and the Enbrel had warmed to room temperature for 30, I was off: skin swabbed, white cap pulled off, skin pulled taut, syringe in place, button pressed and boom! on to the Methotrexate. A couple of big air bubbles slowed down the action, but I soon had the syringe filled with my 25mg, was ready in a seated position, skin pinched this time (and swabbed again, of course!), syringe darted in, drugs pumped in (OK, not so dramatic as that, but whatever!) – done!!!

Course, no one was cheering me on, but, hey, a girl can dream!

Now I just need me some cute red mittens and a gold medal and I'm set!

P.S. Dinner after the shots consisted of a treat: Cream of Wheat (is that just a Canadian thing?) with organic Canadian maple syrup drizzled over it (yum!). Dessert: the obligatory Toblerone bar (and, no, I don't always eat like this; I actually have a quite healthy diet!).

P.P.S. If you want to win a pair of those cute red Canadian Olympic mittens, check out my friend Fiona Richards' blog, Cafe Cartolina, at http://cafecartolina.blogspot.com/. She designs supercute eco-friendly cards, and she's doing The Great Canadian Mitten Giveaway (you just have to post a comment about what you know about Canada for a chance to win). I seriously want a pair!

What It Felt Like – and Still Sometimes Does

Someone asked me recently what it felt like when RA first hit, and I realized going through my blog that I really haven't covered off in a whole lot of detail what it felt like at the beginning, before I really knew what was going on. Especially when it was really bad, first thing in the morning and at night when the stiffness started setting in again.

The worst thing is actually something that hasn't bothered me since: my right shoulder. I'm not sure why it hurt so much, but it hurt like hell, so much so that it kept me awake at night and sometimes woke me up. I don't know if it was all the joint, or if the muscles got involved because I tried to protect the joint and everything tightened up, but all I know is, it hurt.  I had to put a pillow under my arm to support it so it wouldn't hurt so much, and I even resorted to muscle relaxants in an effort to ease the pain.

My knees hurt and my feet hurt and the weight of bedding on them hurt. Luckily my down duvet is light, and once I removed the cover to make it even lighter (brilliant idea!), I could puff it up over my feet and knees so it wasn't even touching them. Plus, the duvet was that much lighter so my poor arms and shoulders didn't have to deal with any more weight than they ccould handle – some mornings it was all I could do to get out from under the duvet, that's how weak I was.

I wouldn't have slept under anything, but it was winter, and I had a low-grade fever on top of everything and had the chills and needed to be warm. (The fever? Still here – no wonder I've lost weight!)

My neck hurt, too (yes, the cervical spine can be affected by RA), and that didn't help matters re my shoulder. Everything was tightening up and going to bed wasn't fun – moving from a sitting to a lying position took some thought and effort in terms of how to do it with the least amount of pain.

In fact, everything took thought and effort. Now I can cross my legs without thinking thanks to all the meds I'm on. Then, every movement was thought through because it hurt or took a great deal of effort. If I talked on the phone for more than 3-4 minutes, it took time to put the phone down because my elbow had frozen into a bent position.

When I had a meeting at work, I asked a colleague who knew what was going on to come by at the end of the meeting to sit down and talk to me till everyone had left. Why? Because I wouldn't be able to stand up properly, and I didn't want anyone other than a select few to know what was going on. How did I stand up? I had to put both forearms flat on the table and push myself up. I couldn't use my hands or wrists; they were too sore. My legs? They were too weak and sore to do the job on their own.

It was a Catch-22 situation: I didn't stand up or move unless I had to because it hurt and made me tired, but I couldn't stay still for more than 10 minutes or so, because if I did, I could barely move. At night in my apartment, I took little walking tours of my living room through to my bedroom and back again, swinging my arms in windmill-like patterns to keep things loose. I was exhausted, but I had no choice.

And I couldn't lie down on my couch, because I was afraid that if I did, I wouldn't be able to get up again. Don't laugh! After that almost happened in the washroom once, I started carrying my cell phone everywhere with me. Reminded me of those "I've fallen and I can't get up" commercials they used to air years ago. Only not so funny now....

When I walked to the elevator, I pushed the button then stood right by the wall where the carpet was just that much more cushy because my feet were so sore. One night while driving home, I hit a big bump in the road and actually started crying because my hand hurt so much from the impact. After that, I started holding the wheel more lightly.

Getting up in the morning was the worst. I lay in bed moving around as best I could to try to loosen things up before actually attempting to get upright. God forbid I actually had to go to the washroom – that would have to wait, it just wasn't possible. My cosy winter housecoat was left hanging and I wore my thin little summer one – it wasn't warm, but I couldn't manage to get on anything heavy.

Washing my hair was difficult; my back was out of the question. I had no non-slip mat in my shower at that point, and  I'm lucky I didn't kill myself getting in and out of my tub given how stiff I was – if I lost my balance, there's no way I would have been able to save myself.

A friend bought me a jar opener. Ziploc bags proved difficult, so I just left them open; in fact, I starting leaving open pretty much everything I could – my contact lens solution bottle, face- and hand-cream jars, lip-balm tins, shampoo bottles, everything. I brought all my prescription bottles to the pharmacy and got them to switch the lids for easy-open ones and put a note on my file that all bottles in future were to have easy-open lids.

Since that really bad time, I'm on meds that have helped. Some things are still difficult. The jar opener gets used all the time. My tights get pulled on in a special way I've devised. My feet still hurt, so the down duvet still gets puffed up. You get the idea. Anyway, hope this helps people understand what it's like, and what it is still like sometimes when the meds aren't working or when an uncooperative joint just decides it's going to act up. :)

Raynaud's or Get Out the Mittens a.k.a. Me As a Three-Legged Dog

So, I can feel the soreness seeping back into my body. I'm down to 5mg daily of Prednisone as of yesterday. My hands were somewhat stiff when I woke up this morning, and I'm aching more overall. Having said that, things aren't as bad as there were at the beginning, so that's good! I'll be interested to see how the Methotrexate and Enbrel are doing on their own when I drop the Prednisone completely next Thursday...

In the meantime, another interesting twist in the RA saga. I've developed what I'm pretty sure is Raynaud's syndrome or disease (haven't been diagnosed yet, so don't quote me!). Last night I went out for dinner with a friend. Before leaving I went to the washroom, washed my hands with cold water (no hot water on tap for some reason), then left. It was cold out, and my car was cold, but it didn't take that long to get home. Still, I was cold and left my gloves on till I got to my apartment, and when I took my gloves off, multiple fingers (not all) had that corpse-like look (in Raynaud's, small arteries in places like your fingers narrow, constricting blood flow).

I've had Raynaud's before (medication-induced by beta-blockers I was on for migraine prophylaxis), so I'm pretty sure that's what was going on, but I'm not happy about it. It's potentially dangerous, and I seriously don't need more crap on top of everything else, but what do you do? Deal, cause what else are you going to do?

I was telling my friend last night that I have a sort of mantra or theory or policy or whatever you want to call it (feeling a bit brain dead right now as it's the end of the week). It's my three-legged dog theory. A dog that loses a leg doesn't freak out about the fact that it's lost a leg – it doesn't know any better. It just starts hopping around on three legs. So that's what I'm trying to do really: hop around and not focus on what's been lost...

P.S. I should have taken a picture of my hands last night (or hand – hard to take a pic of two hands with an iPhone unless someone else is doing it!). Next time the Raynaud's thing happens, I will so anyone who doesn't know what it looks like can see!

P.P.S. Settling in to watch the Olympics. I am a total Olympics freak – once I start, I cannot stop! I will watch anything and everything. And I'm not even a sports nut! So sorry they had to start in such a sad way, though...

Cautionary Advice

Just got back from my family doctor. Had to renew one of my regular prescriptions.

While I was there, she ran through all of the new medications I'm on. She talked to me about Enbrel and how it was making me immune-compromised. She added that, while she didn't think I should live in a bubble, I shouldn't visit old-age homes and that if I went to a hospital, it should be because I needed to be there not because I was visiting someone.

My parents are older, so let's just hope they don't get ill…

Totally Wiped Out

 

Image Copyright Enmerkar  Official license

1 very short walk
+ no nap
+ late night (ie. 2 hours past normal bedtime)
+ 1 visitor
+ 1 complete day of rest (including nap!)

= totally wiped out, shaky + unwell feeling????

WTH? Seriously??

How exactly does that compute? But apparently it does...

Family Reunion...& Leotard

Had my cousin over for the weekend. She came from some distance and we had a wonderful time visiting. On Friday night we went down the road to an Italian restaurant that's new to the neighbourhood for dinner and had a delicious meal. On the way we stopped at a cheese shop and bought cheese, glorious cheese, for the weekend, including one called Mimolette that I've never tried before.

On Saturday, the sun was shining and it looked spectacular out, so we decided to go for an outing to an Anthropologie store. My foot was hurting (on Friday I had walked barely any distance to a pool near work to get the Aquafit schedule), but the store was within driving distance, and I figured I was up to one measly shop, so off we went.

I got a great pair of skinny black jeans (and I do mean skinny – I've lost weight since RA came on, despite munching on endless Toblerone bars and other assorted goodies when I need comfort). My outfits have been somewhat restricted for the past two months, since I can only fit my swollen feet into two pairs of boots, so having one more pair of jeans to wear is great.

We also popped into a health-food store, and I bought some ground-up hemp. I don't prepare meat at home myself, and I'd found out that hemp is a complete protein (woohoo!) and contains other good-for-you stuff like omega-6 fatty acids. Then we rested up at the fab-smelling tea shop Teaopia, and I had a chai latte while watching talented young skaters from a local skating club whip round the outdoor rink and do spins and jumps. Fun!

Back home, we were all set to take a nap when my sisters arrived, so the chatfest began in earnest. My crazy French friend was also coming for dinner, but had to work late, so it wasn't till around 8 that we sat down to eat the yummy meal my cousin had prepared (chicken breasts stuffed with smoked gouda cheese and bacon, risotto and asparagus – can you say delicious?!). During dinner we got onto discussion about what we'd bought at Anthropologie, and my cousin and I both said "Leotards."

Crazy French friend said, "What??"

We said, "Tights. You know – opaque hose." And then my sisters, cousin and I all looked at each other, and asked, "Do you think leotard is actually a German word?" (Although quite frankly, it sounded French to us!)

That's happened before when we were kids. Our mum would be talking to us in English, toss in a German word on a regular basis, and we would think it was English and then use it with our friends, and they'd have no clue what we were talking about. Like Zieps (or English knot) as in: "You have a Zieps in your hair." No clue that wasn't English!!

Anyway, we Googled it – as CFF (crazy French friend) said "Leotaaaaaard?" with her accent and had all of us laughing hysterically. We determined, yes, it actually was English (but, oui, of French origin – aha!!!).
 
And so I've decided I'm going to call crazy French friend Leotard within the pages of this blog from now on.

Today, my cousin and I slept in (thank god, as we didn't get to bed till midnight and my hands and feet were severely unhappy, but I was having too much fun to kick everyone out). Now, I have masses of laundry to do, but despite a nap, I'm feeling shaky and too tired, so I'll just continue to take it easy.

All in all a good weekend that was worth the tiredness and pain. Love my family, love Leotard!

P.S. A friend from work just came by unexpectedly and dropped off some lasagna her husband made. So wonderful, so kind, so thoughtful!!!

A Trip to the Dentist

Had to go to the dentist today. It was just a visit for a regular cleaning, but I'll have a few more trips in the coming weeks. I had dental surgery at the end of October on the gums around a molar to pull them back and prepare the tooth for a crown, and then never got the rest of the work done because RA got in the way. (RA getting in the way of things????? Surprise, surprise!!!)

I had spoken to my dentist at some point because he was wondering why I hadn't booked any follow-up appointments, even though his office had called. So I told him what was going on and explained I was concerned about my dental hygiene because some days it was impossible to hold onto dental floss, so that really wasn't getting done. (And I am normally meticulous about that – I hate going to the dentist and having him ask, "Have you been flossing?" with concern in his voice.)

He was particularly worried about the gums around the molar growing back, so he recommended a great product I've never heard of before, a Sulcabrush. It's basically a teeny-tiny toothbrush-like contraption (see below). It's got a wide handle that's relatively easy to hold onto (a least as easy as a toothbrush), and it's been clinically proven to help stop bleeding gums.

For overall flossing action, power flossers like the Waterpik Power Flosser sound great (I've got to check one out still) – they've got fat handles and studies have shown that they work just as well as manual dental floss. Another one I've heard is good is the Oral B Hummingbird Flosser – I'm just not sure if you have to actually string the floss on this one, which would potentially make it problematic.

Since then, I've been using the Sulcabrush religiously around that one tooth, and when my hands are good to go, which is really most days, I've been flossing away, too. I might have to wrap the floss around my palms, then my fingers to get a really good grip, and the back teeth are really hard to get to, but I manage.

And it's paid off! The dentist said my teeth are in great shape and the molar that needs the crown is perfect, with the gums still where they should be. My dentist thought one thing was interesting. Every time he cleans my teeth, even thought I've always flossed every day (OK, I miss the odd one, but generally, it's every day), and brush for ages, and hardly ever have any plaque, etc., my gums invariably bleed a bit. He's never been able to figure out why. But today, no bleeding at all!! He thinks it's likely all the anti-inflammatories I'm on, but is going to look into it.

I'm just happy to have kept things in good shape...

Round No. 2 & Raclette

"I can do your shots," said my crazy French friend.

I'd asked her if she wanted to come over last night for dinner, but warned her that the reason was I wanted company, since it was the second time I'd be doing my Methotrexate and Enbrel shots on my own.

"I'll inject you," she said again when we talked on the phone at some point. The explanation for her enthusiasm: her dad's a retired doctor, and I think she thinks his skills have somehow worn off on her over time.

So last night she shows up at 7ish (those Europeans eat late). I'd had a not-great day at work. A colleague joked that I needed "topping up" with drugs. Maybe she was right. I have no clue why I was feeling particularly shaky. Was it because I was due for the next set of injections? Was it because I'd been achy in spots the last couple of days? My knees had been bothering me a bit, and then my legs just plain felt like jelly, almost as if the knee joints were really loose. Bizarre! Maybe it was simply because I hadn't been sleeping very well.

Anyway, I left work, reviewed some copy I'd brought back home with me, then just laid down and read a book till CFF (crazy French friend) arrived, since it was too late to take a nap.

When I started getting ready for the shots, once again, she said, "I can do that if you want!"

I declined and said it's OK and did the Methotrexate one. Then, while we were waiting for the Enbrel syringe to reach room temp, she admitted, "Actually I'm not very good with needles."

"Now, you say that!" I exclaimed.

"But it's OK, it's you they're going into! If it was me it would be different!" she said. "But I felt a little funny while you were pushing that in."

"Great," I said. "Last week Tracey was here and she had said she might faint while I was doing it, but she was fine and sat there while I was doing the whole thing. You kept saying you wanted to do the shots, then it turns out you'd be the one to pass out and end up on the floor right when I have a needle stuck in me and can't do anything!"

Lord! My crazy French friend!

Actually the real reason she came over is because she never fails to make me laugh – and so we could have raclette. She has a raclette machine (pictured below). It's essentially a small grill. You cook vegetables or shrimp, etc., on it, and under the grill you slide little trays loaded up with raclette cheese (or other types according to taste) to melt. Yummy and supereasy!

And another reason behind the raclette and the company? To distract me from the injections. I don't really have a problem with them, but they still make my heart race a bit, nonetheless. Takes some getting used to, injecting yourself...

 

A Good Night's Sleep

Sleep has been on my mind a lot lately. When I was first hit with RA, I couldn't believe how uncomfortable bed was for me. Bed! It had always been such a refuge, a comfort for me. I loooooovvvvve to sleep! Always have. Am a total nap person. When I was little, my mum had to switch me out of afternoon kindergarten class into the morning one because a nap on a ittle teeny-tiny mat just wasn't going to cut it.

With RA, all of a sudden, I was dreading going to bed in many ways. I was so stiff and sore, I just couldn't get comfortable.

I've figured out how to make it better, though (as much as humanly possible, because let's face it, there's only so much you can do). Here are my top tips (if you have any suggestions, please do comment on what's worked for you; I'd love to hear!).

1. Get a down duvet. It's superlight and easy to maneuver when you're at your weakest (when I feel crap, I don't put a cover on mine to keep the weight to a minimum – I can barely lift my arms then and, believe it or not, even light, fluffy feathers are too much added weight). Plus, it's superwarm, and I flip the ends under my feet to cushion them when they're feeling sore.

2. Get proper pillows for proper support. I sleep on my stomach (although not when I'm going through a bad spell), so I have little accent-style pillows that I use as shoulder props. I have a down pillow for my head (it's still firm enough for when I sleep on my side), and two pillows that I use to support my hips when I'm on my side.

3. Invest in a great mattress, if you can possibly afford it. I have an Essentia all-natural, eco-friendly latex mattress. It's memory foam and has been superbly comfortable during this whole RA thing. I got it just last year and thank god I've had it during this crazy time. I wouldn't have been anywhere near as comfortable without it. I have the Beausommet model and probably would have chosen a model that was one step softer if I'd known what was headed my way. I wrote a post about it on my Natural Chic blog when I got the mattress; check it out here.

4. Keep essentials handy. I have everything I need on my bedside table: water, medications, eye drops, lip balm, cell phone and other stuff. Plus I put the absolutely crucial items on a small decorative round tray (see above) that's right at the edge by my bed; the tray rotates easily and puts everything even closer to me when I need it. I live on my own, so there's no calling someone to get something for me!

5. Sleep in the buff. No, I'm not kidding! It makes it so much easier to turn around without getting caught up on clothing or bedding, and when you're sore and stiff, anything that facilitates movement is a good, good thing!

P.S. Right now, I'm no longer super stiff and sore all over, so bed is more comfy once again, and that's wonderful. Nonetheless, I'm tired, tired, tired. We're in production at work (what we call it when we're finalizing pages on an issue), and that's always a busy, stressful time. Deadlines galore and some people who don't seem to get the concept...what is it with that??

But tomorrow night, my crazy French friend is coming for dinner and to oversee my second round of injections (her dad's a doctor so she even offered to do them for me!), so that's something to look forward to!