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September 27, 2010

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millicent

Never say never!!

Monica

Yes! Thanks Sara - extended travel and future pregnancy are totally up there on my list of RA worries. You're reading my mind these days:)

Carolina

Hi there,

I've been following your blog since the summer, and your experiences with Enbrel inspired me to get that ball rolling and am now on that medication (with so far, good results! still early...)and have managed to avoid methotrexate!! And will do so as long as possible (preferably never)

I've had RA since I turned 16 after one year of having immigrated to Canada. So, it's been a long while, I'm 22 now. AND I've had my share of difficulties, I'll tell you that, since my RA factor is off the charts and I've had some really intense flare-ups.

In that light, I really enjoy the majority of your blog for the fact that you are putting our condition on the map and it makes people feel connected about a disease that when I was 17, had never made me feel so alone and helpless.

On the flip side, maybe it's because I've been through a tougher episode (and who knows what life has in store for me) but your attitude towards having it seems to be a bit dramatic. Excuse me for being somewhat critical, and having ventured into the world of writing I'm sure you've become accustomed to constructive criticism.

I guess what I wanted to say is that the overall feeling I get from your blog is complaints. I guess inherently blogging about our day to day lives will sound more whiny than anything else, since we often keep quiet about it. I've lived with it longer and possibly a more intense manifestation of the disease, so I might be more tempered in my attitude about it. Especially since I was an angsty teenager in the middle of it. Just, don't worry so much about it. It's serious, yes. It's life altering, yes.

But men won't run away screaming from you because of it.
You can live in a big city with it and screw anyone else who thinks they can assume things and have an opinion about something they're witnessing in a younger lady. Isn't that the entire point of NY, attitude? And the cabs are incredible. Public transit is my friend, and given how cold it gets in Toronto during winter, It's not a huge deal.
You will be able to travel loads, I've done it myself. Travel with friends, family, and it helps. Or just hype up on the advil or whatever works for you before a strenuous activity that doesn't happen often.

This has become a significantly long post, but I've been meaning to comment on your page, and I've found the time now. Now, it's sleep time before another long day at work.

If you're interested in getting in contact with me, I'd be really interested in doing so.

Hang in there, and cheers!

Gina

I've had these same conversations in my mind as well. My significant other and I have a sailboat and we like to take voyages that last a minimum of six weeks. Eventually we planned to take off on the boat for an extended trip (over a year), but it's become logistically quite complicated. And wouldn't you know it...I always feel my best on the boat. It's proof that good living is good for you! I haven't given up yet though! I can't wait to hear about your adventures!

sara

Millicent and Monica- thanks!

Gina- I heartily agree- good living is the best for you. Hope your boat adventure can work out at some point in the future, too!

Carolina- It's interesting because the criticism I get on this blog is normally in the other direction- that because my meds have worked for me (touch wood) and I was diagnosed quickly, that I am too positive or too light on what RA is like. I guess it all depends on what your own experiences have been. Just a few points though- I'm not in New York anymore- I've been in Baltimore for about a year, and the public transportation here is, well, lacking. Luckily I now have a car and live in a walkable neighborhood, too. Public transportion in NYC is great, but taking cabs on a regular basis isn't financially realistic for anyone who works in the non-profit arena like me, and all the subways involve copious stairs, so it can be a huge challenge for people whose mobility is limited by RA (or another condition). And that New York attitude can turn on you when you are the one going slow, so it can be a double edged sword.

I do still travel tons- If you check out the travel section of my blog, I certainly haven't let RA keep me from doing what I love, but I think it's worth noting the challenges, additional planning, modifications and emotions that come up surrounding it- especially for people out there who aren't experienced travelers but want to plan a trip and feel like the RA is prohibitive.

You sound like you have adjusted really well to everything and that's great. For some of us who haven't been dealing with RA for as long, we may need a bit more time to catch up, though generally, I think the tone of my blog is rather cheeky and upbeat, and I hope at times even funny. Thanks for the comment and some discussion!

Tricia

Wow! This is wonderful! You have a great doctor!

RA Guy

Taking such a trip would be quite inspiring, so I'm sending all of the extra energy that I have in hopes of things turning out as you wish them to.

Only recently, after years of living with RA, have I felt like I've finally "gotten my life back". It's a wonderful feeling, knowing that we indeed can continue to do many of the activities that we love while still managing our RA to the best of our abilities.

Your stories continue to be a shining example of this great attitude that I'm sure inspires many, many people...including myself. Thank you for that!

liz

Great news. I'm glad that you asked even though you aren't planning a trip immediately. Sounds like you have a supportive doc and that's wonderful. Now you can plan for that trip in the future.
BTW I appreciate what I have always considered your upbeat take on the challenges of RA.

sara

Tricia- I really do. He's awesome, and this is what I love the most about him!

RA Guy- thanks for the encouragement! I'm so glad that you are also finding your way back into your old life. And the feeling of inspiration is mutual :)

Liz- thanks as always! I hope you are also doing well. This conversation with my doctor definitely makes me feel like this could happen.... assuming I can find the money and the time off!

Sarah Lulu

G'day from a follower in Australia ...with a couple of issues of my own ...RA and Meniere's Disease ... I don't let much get in my way.

If at any future time you want to visit ...

I'd be happy to help.

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