Family

:)

I'm feeling a little petty and self-absorbed today. One of those, "what is the point of living life like THIS???" days. Now don't worry, I'm alright, just a little blah (and in A LOT pain!).



I have had this window open all morning, slowly working on this post. My goal for this blog (and generally, my life) is to stay as positive as possible. However, everyone gets overwhelmed sometimes, and for me that was this morning. I am sure all women who are planning to have children worry that they will not be good mothers, but with RA added into the mix, things are compounded. How can I possibly take care of a baby when I feel like I did this morning??? I suppose it is about prioritizing. Realizing that not having laundry/dishes/vacuuming done is okay, that letting babies stay in their pyjamas all day is not a big deal, that I won't have to leave the house every single day. And most importantly, that I have a partner who is exactly that: a partner. I guess the biggest thing I have to remind myself is that I am not alone in this.



But, basically:

















I love this shirt! You can find them (and soooo many others) online at: www.cafepress.ca/bydls

What in the heck?!?!?!?

Okay. I live in Labrador. That would be in northeastern Canada. It's near the end of December. Connecting all of the aforementioned dots, one would come to the conclusion that there should be snow, right? Well, to be honest, we have snow. What little bit is left is covered in an icy wet sheen from the ridiculous amount of rain and above zero temperatures we've been having.

This sucks at any given Christmas. I'm a girl who likes her snow. I want to go ski-dooing, ice-fishing and snowshoeing (if my ankle cooperates), and just generally enjoying the prettiness that is big, fluffy flakes falling from the sky. What particularly sucks is that we have family coming in for the holidays. Family who should be able to enjoy all that Labrador has to offer in the winter department. Family who should be able to at least go outside without falling and breaking something. I seriously had to be helped to and from the car, it is that treacherous.

Not to mention the fact wild weather changes (cold to snow to rain to warm to wind) wreaks total havoc on my body. MAJOR flare this weekend. Yuck.

In an effort to stay positive I am going to wish for a major dump of snow, all the while still enabling the Labrador highway to be drive able. Is that even possible?

Fa la la la la, la la la la!

Wheeeee!!! Okay, it is no surprise to anyone who knows me, but I LOVE christmas!! I love the snow, the food, the family time, the time off from work, the music and the movies. My sister and I have already done our long-standing tradition of watching "The Santa Clause". She slept through the whole thing, as usual. What's unusual is that I stayed awake :). Domino didn't have to watch it by himself this year.

So much love and giddiness. We kick-started things last weekend by decorating the house. I actually realized how many decorations we have, and I guess didn't previously put out due to living in a one bedroom, basement apartment. Now that we are having our first christmas in our ridiculously big house, there's plenty of space for every knick-knack.

This weekend we are going out on ski-doo to cut our tree down. This is not a new tradition, but exciting none-the-less. We'll possibly throw the dog in the komatik, though last year she was not too impressed about sharing space with a tree. Despite the fact that she is pretty big, she demands to be lifted in and out. Except when a tree is involved, then she is as agile and high-jumper-esque as they come. We'll see.

Also, all of my in-laws may be coming in boxing day! Driving for at least two days!! Over a snow-covered highway!!! After just returning from Mexico!!!! Should be fun times :D And involving some serious acclimatizing :) I sincerely hope they make it, the parents have only been once (in may), and the brother and his girlfriend has never been. In my opinion winter is one of the best times to come to Labrador. Mind you, I like snow. Mind you, again, I don't shovel it.

Despite being a self-described "non-cook" I'm itching to do some kind of baking. Which is not helping my not-wanting-to-gain-any-more-fat plan. Hmmm, any easy ideas for those of us that are kitchen-challenged?

Yay!

So, my last dose of methotrexate is done. Over. Finis. You can call me one happy girl, indeed :) AND, it turns out that I am not the disease-ridden monster incapable of bearing and caring for children. Nope, as it tuns out, my first appointment with our ob/gyn was amazing and he was very confident in my health and impressed with our plan and research. Basically, he said, "go have a baby!"

Smiles :)

Blessings

As much as I hate this disease, as much as I want to kick it to the curb, as much as it has destroyed and will keep destroying my body, and testing my sanity, it could be much worse.

On top of the unbearable pain, the stiffness, the change in quality of life, the planning months in advance for something so natural, the fear of what my future holds, the worry about what I am getting my partner into, there is one thing that has never been a worry:

I could also be in financial ruin like so many others with my disease. Or unable to access medications to manage my ra.

Some medications can cost up to (and maybe even beyond) $25,000 a year. Seriously.

And, I have it all covered. All of it. My medications, travel to see specialists (where I live, I have to fly at least 1 1/2 hours to get to a rheumatologist/orthopedic surgeon), everything.

I am a member of an Aboriginal group that has self-governance and provides amazing non-insured health benefits. No co-pay, no claims, if my doctor is recommending it, it is most often covered entirely. If the medication is deemed okay by Health Canada, then it is a go. My mother has traveled with me for up to a week to help me post-surgery. Plane tickets, accommodations, food, both of us covered.

I had always planned to come back to Labrador after school (which was also fully covered: travel, tuition, books, living expenses. Seriously.) and give back to the communities. And I have. This is my home, and it has given so much to me.

I may have a crazy, crappy disease, but I am so, so lucky. And, I am so, so thankful.

Blargh!! And Rowr!!!

Ew, ew, ew, methotrexate sucks!! I can't wait to be done with this vile medicine (for you four readers who don't know, it's a low-dose chemo)! AND, I just realized that I am only weeks away from stopping it! Gimme a woot!

I took it last night, and already feel a mouth sore cropping up. Yuck. And ow.

So, soon, no more nausea, mouth sores, med induced fatigue (I'm guessing fatigue is a part of my life, not just from meds), and having to drink gallons of water to flush it through my system. I do like water, but it's overwhelming to drink so much when you feel icky.

For my dose of positivity to get me out of this methotrexate fog, I have another physio appointment this afternoon :) I think it will basically just be me telling her that I love my ankle brace. Did I mention that I love my ankle brace? Cause I do. Here are some pictures that make me happy:

We grew sunflowers in our backyard! Really!:

Cute boy with yummy fish. Life does not get better:

She never looks straight at the camera! It's a little dark, but isn't she cute?:

Walking? What a strange concept :)

Soooo, I finally got my long-awaited appointment with the physiotherapist last week. My goal was to get an ankle brace to provide some much needed stability to my left ankle. And that is exactly what I got in the form of this:

www.aircast.com/index.asp/fuseaction/products.detail/cat/1/id/6


Awesome!

Hopefully I will be getting my custom-made orthotics this week as well, and I'm really hoping that with the two of them combined (plus meds kicking in, please?) I'll be able to go for walks!! Imagine that! Or, even just walking down the road to work!

It's too much. I can't handle it.

Mmmmm :)

I just wanted to write a post about how much I love cheese.

Soooo goooood. And I'm not talking about neon orange cheddar here. No, no, no, I'm talking about triple creme brie, creamy blue, goat cheese covered in ash, other cheese with ash in the middle (what's up with ash? WHO CARES - soooo goooood), and curds. Sweet, delicious, save my life curds. Curds on their own, in poutine form, straight to my mouth, squeaky curds. If curds don't squeak, they ain't good curds.

Cheese is good when it's on it's own, in a salad, on a cracker, paired with fruit, on pasta, melted in the oven with maple syrup and walnuts then scooped up with really nice crusty bread. In case you haven't noticed, I've eaten some really good cheese lately.

This post is brought to you by the Dominator, who just got back from Montreal (land of lovely cheese and sweet mother-in-laws who buy said cheese).

I am no different

....than many other women. I succumb to media influences, too. I tried two different topics for this post before settling on the topic of body image. I had just come from a site with a slide show depicting images of women (and one man and one cat!!) and what their BMI's were (not the actual number, but the category: normal, overweight, etc.). Here it is:

http://kateharding.net/bmi-illustrated/

It was totally ridiculous! I would never guess that many of the individuals were categorized by the BMI as being "overweight" or "obese", or whatever other category they fit into. I guess that is exactly the point: how can we categorize someone, and their health, by looking at them???



According to the index, I am very close to being "overweight". A couple of pounds away. And while I have my moments, thinking about losing weight, annoyingly staring and poking at my soft tummy, I do not feel as though my weight is impacting my health. Embarrassingly, it's all about aesthetics when I do think about it. How I look in the mirror. Sad.

Why do we do this to ourselves? How does it help me, my confidence, to judge myself on something so arbitrary? I know that if I gained a lot of weight, it would not be helpful to my ankle, which hurts a lot when weight is placed on it. But come on, how much weight would I need to lose for my ankle not to hurt? An amount that would be unhealthy for the rest of me, that's for sure.

I'm not sure how to finish this post, or what conclusion to come to. I certainly don't feel like this all the time, but it does go to show you that anyone, no matter how confident and comfortable one is, can have times where they question themselves. Well, I do feel a bit better than when I started to write this post yesterday :)

In other news, I just joined BlogHer! Yay!! I'm actually doing something that I intended to do: start a blog to meet some folks in the same boat as me :)

StolenWords

Recently my words have been stolen. Well, maybe "stolen" is not the word, but they have certainly been appropriated. I'm not too upset about it, I just find the situation bizarre. I had responded to an email to someone, as usual stating my opinion (I'm not known for that, really ;) ), backing it up with some stats. They then posted it somewhere public, without permission, and without indicating that they were my words.

Huh.

I'm not angry, or embarrassed, and I will stand by what I said. Just confused. Why would someone do that? I'm assuming that they thought I had good points, and it helped their argument. That's cool. But if that were me, I would have said something along the lines, "so-and-so said it best: 'insert quote' ".

Anyway, that was my weird moment of yesterday, a day way too filled with anger. The point of my email was to help someone with some facts, give my opinion, etc. on a topic that is near and dear to my heart: violence against women. Some of the misinformation out there is astounding! But that is another post for another day.

Oink Oink

Sigh.

I feel so conflicted in so many ways regarding H1N1. For one thing, I feel that there is way too much hysteria and scare tactics surrounding this. However, I also feel like it shouldn't be taken lightly, that there are individuals who will be seriously impacted by this. I don't know if it will be any worse than the "normal flu" that happens every year, but why take a chance?

I've decided to get the vaccine. I'd been wavering back and forth about whether to do it or not, but have made the decision to go ahead and get it. With my compromised immune system I could be taking a serious chance if I do contract it.

It's bothering me that there are some people who are aggressive either for or against the vaccine. Just because I have made the decision to get it doesn't mean that I think anyone else should or should not. My big beef recently has been with those who don't see a need to take precautions, not necessarily for themselves, but for those around them. Why scoff at cleaning commonly used things such as doorknobs and phones? How does taking precautions during this time harm them? Especially when there are folks such as myself, and much worse, who are more subject to getting it, and cannot fight it off like most?

I get that people are tired of hearing about it. But these people are also commenting on it on Facebook, and in general conversations. Why perpetuate it? If you are sick of it, just leave it alone. It will pass.

On a better note, my boyfriend is a smarty-smart pants who is rocking his Master program :) He makes me feel happy and swine-free :)

Where I do one of those "meme" things for the first time ever

I found this on http://chronicbabeclub.ning.com/. It was pretty insightful reading about others' experiences, many similar to my own, some different. Those who live with chronic/invisible illnesses certainly know the misunderstanding, and sometimes condescension, that comes with it. I feel things like this can really open up dialogue and create awareness. Here I go.

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Rheumatoid Arthritis
2. I was diagnosed with it in the year: late 2001
3. But I had symptoms since: early 2001 (lucky early diagnosis).
4. The biggest adjustment I’ve had to make is: learning my limitations.
5. Most people assume: that I have osteoarthritis, that it's the same as the pain in their knee.
6. The hardest part about mornings are: getting out of bed and standing up.
7. My favorite medical TV show is: House!
8. A gadget I couldn’t live without is: hmm, does a laptop count as a gadget? If not, the electric can opener.
9. The hardest part about nights are: finding a comfy position and not getting stuck in it.
10. Each day I take 3 pills & vitamins (except on tuesday, when it's 13. And the needle I take every two weeks).
11. Regarding alternative treatments I: love massage therapy and acupuncture.
12. If I had to choose between an invisible illness or visible I would choose: this depends on my mood. It would be nice to have people automatically see my disability, but it must be difficult to have the potential of constantly being defined by it.
13. Regarding working and career: I can currently manage my full-time job (which involves a lot of sitting and breaks when I need it), but need to lie down when I get home.
14. People would be surprised to know: that I may not love my situation, but I have accepted it. Having RA is a part of my life now (a pain-in-the-behind part, but still).
15. The hardest thing to accept about my new reality has been: currently not being able to walk to work. It's so close! And getting pregnant. I just want to jump right into that. Alas, that cannot be done.
16. Something I never thought I could do with my illness that I did was: I once jogged for 25 minutes straight. I was high on happiness after that :)
17. The commercials about my illness: bug me like crazy. Yeah, it's just that easy for the pain to go away. Or the deformed/missing joints. Or the scars. Or the mobility aides.
18. Something I really miss doing since I was diagnosed is: dancing for hours :( Being able to touch my head/face like a normal person.
19. It was really hard to have to give up: dreams of things that I would be able to do in my life. Things that involve being physical: most yoga positions, learning how to rock climb. In general, just being physically strong and capable.
20. A new hobby I have taken up since my diagnosis is: blogging :)
21. If I could have one day of feeling normal again I would: Have a full, active day, and not pass out at the end of it.
22. My illness has taught me: to celebrate what I CAN do.
23. Want to know a secret? One thing people say that gets under my skin is: "but you're so young!" or, "yeah, I have a bad knee, too". I'm actually not that statistically young for RA. And I don't have "creaky" joints. My immune system is attacking and destroying many of my joints.
24. But I love it when people: tell me how strong they think I am. It's really sweet :)
25. My favorite motto, scripture, quote that gets me through tough times is: life is good.
26. When someone is diagnosed I’d like to tell them: that I am here to offer support and help and a shoulder to cry on, if they need it.
27. Something that has surprised me about living with an illness is: just how much daily pain I can take. I have to say, it's pretty impressive what I do anyway, while being in horrendous pain (not to brag, or anything ;) ).
28. The nicest thing someone did for me when I wasn’t feeling well was: so many things. Between my mom and my boyfriend (and many other folks), I have been taken care of to no end: cleaning, dishes, dressing me, washing my hair, travelling with me to surgery, cooking for me, literally carrying me into the house :), asking me if I am alright, and most importantly, asking me if I need anything :)
29. I’m involved with Invisible Illness Week because: I actually just became aware of this too late. Next year I'd like to get more involved.
30. The fact that you read this list makes me feel: really good. And hopeful :)

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com

Babies, babies, oh my!!

It's starting to feel really real. The whole baby thing. Not that it didn't feel real before, but something has been solidified. We had an appointment with my regular doc yesterday with the focus of informing him of our plan, asking a few questions, and asking for a referral to an ob/gyn (with whom I already have an appointment!!! Fast work, indeed!).

Now, it's not like I'm expecting the pregnancy to automatically be difficult, or scary. But, I want to be prepared in case it is. What if I'm not in the high percentage of women whose RA gets better? What if it gets worse? What meds are safe to take? Any??? I just want a good established relationship with an obstetrician BEFORE I get pregnant to avoid any delays when I get pregnant.

I just spent an afternoon in the company of some great women, and especially, some great kids. It was really nice getting the phone call from the doctor's office with my appointment date, then going back out and seeing these cuties and thinking, "this could be me, soon" :) Now I get to spend an evening with some great friends, good food, and one rockin', stompin' baby.

Happiness :)

Sunday Snow

We've had a couple of snowfalls this year, little ones. One in particular a few weeks back that involved waking up to some white on the ground. However, today is THE snowfall! Waking up to that hush, where all sound is masked by fluffiness. Where, even when it is cloudy (obviously! It's snowing!), the light is bright, filling the house. When, as we speak, the neighbours snowblower is going, and the steps and driveway need to be shoveled, to clear away the hump left by the plow.

I, being ever the lazy one, have chosen to stay inside and admire from a distance. We've had a busy weekend, volunteering friday evening and all day saturday at a local fair-trade sale. I'm not sure if it should even be classified as volunteer work, what with our gift certificate and a chance to look around before the masses descended. It was an awesome day, energizingly busy, and a chance to help out with an organization that promotes fair-trade. Time to walk the talk, I guess. But, I need a recovery day. And that day is today.

As I type, the smells of homemade spaghetti sauce and home baked bread are filling the air. What a perfect accompaniment to the weather. I know that the winter here is unbelievably long. That the days are going to continue to get shorter and shorter, to the point of nearly being invisible, and that snow shovelling will not be anywhere near endearing.

But, I love it. I love winter. The snowshoeing, fishing, going to the cabin, ski-dooing, throwing snowballs at the dog/boyfriend :) Winter is just not the same in a city, and for me, life is just not the same without winter.

I've had a rough couple of days, RA-wise.

I had been doing super well. Minimal pain lasting about a week. The Frankenstein/Hunchback of Notre Dame walk was not quite as noticeable. But, the RA monster has returned with a vengeance. In the ankle, shoulder, wrists and elbow :( Not to mention lovely side-effects from meds. Needless to say, I'm feeling a little negative. But, I don't want to. I want to feel positive. So, despite the pain, despite the med-induced nausea and fatigue, I'm going to think about positive things:

Road trip camping on a beach. The sound of the waves and sleeping on soft sand was just enough to erase the millions of mosquitoes:

Living in a part of the country with views like this:

The only form of exercise I can do these days :) :

Great friends who let me hold their really, really cute babies!:

All in all, life is pretty sweet. Sometimes you just need a little pick-me-up telling you that. So, maybe I have to hold down a job, but when I get holidays, they are filled with nature and amazing experiences shared with someone I love. I may not live in a cool, convenient city, but the wilderness and beauty around me far outweighs any convenience. Maybe I do walk like Frankenstein/Hunchback, but, boy can I ride a stationary bike! And, maybe I don't have my own babies yet, but I have many friends who do, and are all too happy to share the love and squishy-time :)

I feel better :)

Okay, so I am very new to the world of blogging. It's been something I've been thinking about for a while. I've come to realize it may be just the forum to meet women who are going through the same issues that I am. I hope it works :)

I have had very aggressive rheumatoid arthritis for the past 9 years. In that time, I have been on countless medications, have had many ups and downs, faced big mobility issues, and have had two surgeries (one total elbow replacement, and one resection to FIX that replacement. Fun times). My disease has not been under control lately, and I'm aiming to fix that.

See, here's the thing: I've got babies on the brain. Big time. Ask my boyfriend, he'll tell you :) And the thing with rheumatoid arthritis (aka RA) is that you can't just get pregnant any ole time. There has to be planning, around meds, flares, surgeries, etc. So, I'm really hoping to find other women in the blogosphere that knows what I am going through (and other cool people, by the way. I do have other interests: food, the environment, books, movies). So, I know you're out there, lets support each other, mmmk?