Normally, I don't consider myself as living my life ruled by RA. Yes, I have it and yes, I have to make some modifications to deal with it - but I'm lucky enough to not be in pain all the time or always walk with a limp. So, it was somewhat surprising to me when I realized the other day just how much RA really has taken over/changed certain aspects of my daily life.
As I was getting ready on Tuesday, I thought to myself "Oh, it's shot day - gotta do that before getting dressed." And then on Wednesday before bed, as I was taking my usual meds, I caught myself thinking "Oh, it's methotrexate day - gotta add those pills to the mix." As I thought more about it, I realized Tuesday-Friday is no longer Tuesday, Wednesday, Thursday, Friday. It's shot day, metho day, leucovorin day and shot day again. Kind of funny/surprising how RA has changed even something as simple as the days of the week.
Have you noticed similar simple, yet surprising changes?
Friday, August 19, 2011
Monday, June 13, 2011
Thoughts & Prayers for RA Superbitch's Family
I'm not sure how many of you read Confessions of an RA Superbitch, but I just found out on her Facebook page that she recently passed away. I am in a state of shock. I don't know all of the details, but I assume it was from RA complications. I knew she was having a lot of trouble finding a treatment that would work for her, but I really didn't expect this. I suppose you never really expect it in a 30-something mother. It's scary. It's heart breaking. And it hits way too close to home.
I've worked hard to push all the complications and dangerous medication side effects out of my mind. I figured what good could they do? But this brings them all rushing back. I try not to take things for granted as it is, but this really brings things into focus.
Please, hug your families a little bit closer and hold on a little bit tighter tonight. And send prayers out to RA Superbitch's husband and young son. Rest in peace.
I've worked hard to push all the complications and dangerous medication side effects out of my mind. I figured what good could they do? But this brings them all rushing back. I try not to take things for granted as it is, but this really brings things into focus.
Please, hug your families a little bit closer and hold on a little bit tighter tonight. And send prayers out to RA Superbitch's husband and young son. Rest in peace.
Saturday, April 30, 2011
To metho or not to metho, that is the question...
So when I met with my new rheumatologist last week, he said overall things looked like they were in good shape and he thought my treatment regimen was mostly appropriate. I say "mostly" because at the end of the appointment, he did mention that I might want to consider going back on a low dose of methotrexate to see if that would eliminate the lingering pain I have in my feet.
Right now I'm taking Enbrel (25mg twice a week), Plaquenil (200mg twice a day) and Aleve (1-2 pills twice a day). Most days I do really well (as long as I don't try to run, which, like my old rheumy, this doctor doesn't think is a good idea given my foot erosions). The main lingering issues are that every morning I hobble out of bed as my messed up feet get adjusted to the idea of walking again. And when I walk for more than about 30 minutes, the tootsies start to act up and I have to rest. The last rheumy said I was in remission, and this lingering pain was just something that would always be there due to the foot erosions. This rheumy thinks adding 4 methotrexate each week might clear things up. But, he's leaving it up to me to decide.
What to do, what to do... I was on methotrexate for 6 months when I was first diagnosed (along with prednisone at first, with the addition of Enbrel 3 months in). I got up to 12 pills a week. And the day after I took those pills, I was a useless heap. The fatigue was crushing. It would get a little better each day until I had to take the pills again - rinse, lather, repeat. I also lost a lot of hair and was very self-conscious about that. This doctor says those side effects might not happen with only 4 pills a week. But is it worth the risk? Honestly, I have it pretty good right now. I can do most things that I want to do. Yes, I have to rest more often and there are days when I'm achy as hell... but at least I have a full head of hair! And energy!
(And I can have regular cocktails... a plus for summertime!)
What are your thoughts? Anyone out there taking a low dose of metho in addition to Enbrel? How are the side effects? Love to hear your thoughts!
Right now I'm taking Enbrel (25mg twice a week), Plaquenil (200mg twice a day) and Aleve (1-2 pills twice a day). Most days I do really well (as long as I don't try to run, which, like my old rheumy, this doctor doesn't think is a good idea given my foot erosions). The main lingering issues are that every morning I hobble out of bed as my messed up feet get adjusted to the idea of walking again. And when I walk for more than about 30 minutes, the tootsies start to act up and I have to rest. The last rheumy said I was in remission, and this lingering pain was just something that would always be there due to the foot erosions. This rheumy thinks adding 4 methotrexate each week might clear things up. But, he's leaving it up to me to decide.
What to do, what to do... I was on methotrexate for 6 months when I was first diagnosed (along with prednisone at first, with the addition of Enbrel 3 months in). I got up to 12 pills a week. And the day after I took those pills, I was a useless heap. The fatigue was crushing. It would get a little better each day until I had to take the pills again - rinse, lather, repeat. I also lost a lot of hair and was very self-conscious about that. This doctor says those side effects might not happen with only 4 pills a week. But is it worth the risk? Honestly, I have it pretty good right now. I can do most things that I want to do. Yes, I have to rest more often and there are days when I'm achy as hell... but at least I have a full head of hair! And energy!
(And I can have regular cocktails... a plus for summertime!)
What are your thoughts? Anyone out there taking a low dose of metho in addition to Enbrel? How are the side effects? Love to hear your thoughts!
Tuesday, April 26, 2011
New Article on Pregnancy and Arthritis
Yes, it's been a while. A long while, in fact. In the months that I've been silent, I've sold my house, completed a cross country move (part of the reason why I put pregnancy back on the back burner) and am working on buying a new home here and settling in. It's been a lot, but I'm very happy to be in a sunnier, warmer climate now!
As part of that settling in, I had to find myself a new rheumatologist. Today was my first appointment and as I waited, I picked up a copy of Arthritis Today (AT). They had a very interesting article on arthritis and pregnancy. Unlike some things I've read out there, this article was actually very encouraging and inspiring. I couldn't find the exact article on the AT web site, but if you're interested, you can request a free copy online (go here).
I would also point out that the article seems to be even more up-to-date than the AT web site. For example, they had a list of safe and unsafe meds in the article and unlike the old list on the Web site, plaquenil is now considered safe during pregnancy. The AT article says the jury is still out on biologics, but as I've mentioned before, there are several small studies that have shown no increased risk of birth defects. As biologics become more prevalent (so it seems they are from all the commercials lately!), I hope there will be even more studies to put our minds at ease.
Anyway - just wanted to point out the very helpful AT article. Hope you get a chance to read it!
As part of that settling in, I had to find myself a new rheumatologist. Today was my first appointment and as I waited, I picked up a copy of Arthritis Today (AT). They had a very interesting article on arthritis and pregnancy. Unlike some things I've read out there, this article was actually very encouraging and inspiring. I couldn't find the exact article on the AT web site, but if you're interested, you can request a free copy online (go here).
I would also point out that the article seems to be even more up-to-date than the AT web site. For example, they had a list of safe and unsafe meds in the article and unlike the old list on the Web site, plaquenil is now considered safe during pregnancy. The AT article says the jury is still out on biologics, but as I've mentioned before, there are several small studies that have shown no increased risk of birth defects. As biologics become more prevalent (so it seems they are from all the commercials lately!), I hope there will be even more studies to put our minds at ease.
Anyway - just wanted to point out the very helpful AT article. Hope you get a chance to read it!
Wednesday, July 28, 2010
Thoughts on turning 30...
Today, I am 30. There, I put it in print for all to see. And you know, I think I'm OK with it. It's taken a while to get here, but I'm here. Along the way, I've had many thoughts about where I've been, where I am now, where I thought I would be at 30, etc. Children have, of course, factored into that.
There's definitely been some moments in the last couple of weeks where I thought "Oh my God, I'm about to be a childless 30-year-old!" But, now I'm back to "OK, I'm a child-free 30-year-old. Now let's go out for drinks!" :-P
All in all, I think I'm pretty happy with where I am and what I accomplished in my 20s. I got a degree, traveled, got married, bought a house, got settled in a career (oh yeah, and got a crappy autoimmune disorder, but faced it head-on). I don't know what this next decade will bring, but I'm hopeful. I'm looking forward to more travels, more experiences with friends & family—more good stuff all around, I guess.
So - I think we ought to let go of the notion that turning 30 being some big life-changing event that you should worry about and dread. It seems to me, 30 might just be the age where we finally get our stuff together. Here's to the big 3-0!
There's definitely been some moments in the last couple of weeks where I thought "Oh my God, I'm about to be a childless 30-year-old!" But, now I'm back to "OK, I'm a child-free 30-year-old. Now let's go out for drinks!" :-P
All in all, I think I'm pretty happy with where I am and what I accomplished in my 20s. I got a degree, traveled, got married, bought a house, got settled in a career (oh yeah, and got a crappy autoimmune disorder, but faced it head-on). I don't know what this next decade will bring, but I'm hopeful. I'm looking forward to more travels, more experiences with friends & family—more good stuff all around, I guess.
So - I think we ought to let go of the notion that turning 30 being some big life-changing event that you should worry about and dread. It seems to me, 30 might just be the age where we finally get our stuff together. Here's to the big 3-0!
Friday, July 16, 2010
"Aches & Pains" Forecast
So I was just looking at the weather for the upcoming weekend and I see that the Weather Channel has a new "Aches & Pains" forecast. Here's the full nationwide map:
In my area today, the forecast is a "5" for moderate aches & pains. This pretty much jives with what my knees told me walking up the stairs today. The "regular" forecast is noting a 50% chance of rain. In my experience, I'm always a little stiffer/achier on rainy days, even though I've been doing pretty well otherwise lately.
Some studies have shown weather does not affect arthritis, other studies have shown that it does. Obviously the Weather Channel is jumping on the latter bandwagon (and I totally think they should be!).
What's your experience? Can you predict rain by the creaking in your joints? Does hot weather make you feel worse? Or are your pain levels pretty constant regardless? Love to hear your thoughts!
(courtesy of weather.com)
In my area today, the forecast is a "5" for moderate aches & pains. This pretty much jives with what my knees told me walking up the stairs today. The "regular" forecast is noting a 50% chance of rain. In my experience, I'm always a little stiffer/achier on rainy days, even though I've been doing pretty well otherwise lately.
Some studies have shown weather does not affect arthritis, other studies have shown that it does. Obviously the Weather Channel is jumping on the latter bandwagon (and I totally think they should be!).
What's your experience? Can you predict rain by the creaking in your joints? Does hot weather make you feel worse? Or are your pain levels pretty constant regardless? Love to hear your thoughts!
Monday, June 21, 2010
"The Mommy Club"
What is "The Mommy Club," you ask? It's the strange radar-like ability for moms to hone in on and find each other in a room (even when kids aren't present), clump together in a circle to talk about all-things mommyhood (breastfeeding, childhood firsts - walking, teething, etc. AND poop. Always poop.) - and leave the non-moms standing with our arms crossed looking at our feet. Except, the "non-moms" these days feels more like the lone "non-mom" AKA, yours truly.
I'm probably overexaggerating this a bit (emotions have the effect on me), but sometimes it's just how I feel. And it doesn't feel good. I guess it brings me back to school and being the fat kid who got left out. Now I'm not the fat kid anymore, but I'm the childless one who couldn't possibly related to late night feedings, diaper changes, etc.
Everyone around me seems to be procreating; it's the age, I suppose. Sometimes I'll be at work amongst my mommy friends or out with girlfriends and they'll all be talking the mommy-talk while I sit silently staring off into space. It's not that I have nothing to add. I was a nanny for a couple of years, I do have some experience in these matters. But it feels like nothing I say could mean a thing to these women. They aren't trying to be mean, but you see - it's just that they are Mommies (yes, with a capital "M"!). I am not. I am an outsider. I do not belong.
All choices have their pros and cons. This is one of the cons of my current choice to hold off on children. Certainly, I don't think choosing to have children just to feeling like part of a group is a good move. But, during some of the darker days, it admittedly has been moved to the "pro" column of having children. Is it sad of me to admit that? Perhaps - but, hey, it's honest.
I'm probably overexaggerating this a bit (emotions have the effect on me), but sometimes it's just how I feel. And it doesn't feel good. I guess it brings me back to school and being the fat kid who got left out. Now I'm not the fat kid anymore, but I'm the childless one who couldn't possibly related to late night feedings, diaper changes, etc.
Everyone around me seems to be procreating; it's the age, I suppose. Sometimes I'll be at work amongst my mommy friends or out with girlfriends and they'll all be talking the mommy-talk while I sit silently staring off into space. It's not that I have nothing to add. I was a nanny for a couple of years, I do have some experience in these matters. But it feels like nothing I say could mean a thing to these women. They aren't trying to be mean, but you see - it's just that they are Mommies (yes, with a capital "M"!). I am not. I am an outsider. I do not belong.
All choices have their pros and cons. This is one of the cons of my current choice to hold off on children. Certainly, I don't think choosing to have children just to feeling like part of a group is a good move. But, during some of the darker days, it admittedly has been moved to the "pro" column of having children. Is it sad of me to admit that? Perhaps - but, hey, it's honest.
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