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.
Friday, November 20, 2009
Thursday, November 19, 2009
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?:
Monday, November 16, 2009
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.
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.
Sunday, November 15, 2009
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).
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).
Thursday, November 12, 2009
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.
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 :)Friday, November 6, 2009
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.
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.
Wednesday, November 4, 2009
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 :)
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 :)
Sunday, November 1, 2009
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
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
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