Thursday, June 13, 2013

The Gifts We Give Others And The Gifts We Give Ourselves

Well, I can’t believe that I’m writing this, but this is my 500th post.  Incidentally, the 5th anniversary of my blog came and went in April, and I kind of forgot.  That’s what happens when you are writing a dissertation and planning for the future, all at once.

I feel like I can say (and hopefully don’t jinx the fact that) things have finally started to fall into place for me.  I can’t disclose all of it right now, but I feel like I’ve found my niche, in life and in love.  I feel like I’ve found where I belong.   

I am slowing cutting ties in Michigan, which is harder than I thought it would be.  I will finish my volunteer position, which I have held for almost four years, next week.  As the next few months move forward, I will close out more and more of this chapter, as I am preparing for the next chapter. 

And it’s so strange.  I got sick here, and diagnosed here.  This blog began here.  I met my boyfriend here.

So many things have happened here.  I’ve been in this town for a total of 10 years.  A little more than a third of my life has been spent here.

And now I have to start over, make new memories somewhere else.

But I won’t be alone.

I’ve learned so much over the last several years, but mainly I have learned that there is life in spite of illness.  It can be very difficult at times, downright sucky, but it is possible.  I have had to accept my limitations, which isn’t always easy. 

And I’m learning to trust.  I had a lot of bad guy experiences following when I first got sick.  And it felt like it was me.  Like I wasn’t worthy, like I was damaged goods.  So I relied on people to build me up, who couldn’t possibly. 

But I have found that person.  And although I have to pinch myself some times to remind myself that it’s real, I can trust him.  And of course, I worry.  Of course there are moments when I’m sleeping 18 hours a day that I can’t imagine why he would hang around.  But I think were past that.  I think he’s here to say, and so am I.

So this is a reflection, but it’s also a celebration.  Somewhere along the way, I did something right.  I’m not sure what it was, because for a while it only seemed like bad things could happen to me.

My health is okay.  Not totally stable, but not careening through the universe at lightening speed, either.  I’m trying not to think too hard about the fact that when I move will come with it new insurance and new doctors. 

I don’t know who I’d be without illness.  That’s no longer an option.

Sometimes I don’t feel my age.  We’ll go out, have a drink or two, and I’m down for the rest of the weekend.  

But I also know myself better than I did before.

Sometimes I feel totally in control and sometimes I feel like I have no idea what’s going on.  Being sick has taught me that in many ways, we aren’t in control. 

It’s weird to think that illness may have been a gift.  It’s kind of a macabre thought.  But as I look back, I could see ending up insanely unhappy if I would have stayed directly on the path that I was on.  It took illness to make me see what was truly important, and what I am truly passionate about.

Now on the days when I can’t get out of bed, remind me that I said this.  But for right now, things are different than I expected them to be, and that’s not necessarily a bad thing. 

This is my story.  And this is only the beginning.

Just a note that my blogging may be less consistent over the next several months, as I finish my dissertation, defend it, move to another state, and begin the next chapter.  I hope I have loads of time to keep blogging, but if not, you know why, and know that it is only a temporary hiatus.

So please keep reading.

I owe so much to the community that has been created here.  So thank you, from the bottom of my heart.

This blog has been a gift for me.  You all have been gifts.  And I hope that I have helped or inspired or made you think or laugh or cry.

Wednesday, June 5, 2013

Reflections On The 1st Rheumatoid Arthritis Blogger Summit*

Last week, I had the privilege of attending the 1st Rheumatoid Arthritis Blogger Summit held by Pfizer in New York. 

When I got the invite, I was super excited and surprised to be included.  It was really an honor!  And I’m not going to lie, being treated like a queen for a day was nice, too!    

I was a bit worried about a hidden agenda, but the day opened by us being told that Pfizer was not going to discuss any of their medications.  Honestly, this impressed me.  And it put me at ease that I wouldn’t feel like I had to write about a product that I haven’t been on, because in general, I usually don’t really discuss medications that I, myself, haven’t been on, unless there is news that I feel is really important for my readers.

We did learn, however, about an unbranded campaign that Pfizer is rolling out, Rethink RA.  Unbranded means that the campaign is not connected specifically to any drugs produced by Pfizer.  In other words, this program is designed to show Pfizer’s commitment to the RA community, in general, and not just patients that are on their medications.    

You can check out the website,  And the (free) kit that you can order has a lot of handy tools in it for helping you start or continue a conversation with your rheumatologist.  Hopefully this campaign will continue to evolve!  

Rethink RA Kit
 I think it is hugely important for there to be an open line of communication between patients and pharmaceutical companies.  I think a lot of times it can seem like the pharmaceutical companies are untouchable, and there are also a lot of people that tend to stand between the patient and pharmaceutical companies.  It was nice to be able to share my opinions and experiences as an RA patient directly, and I hope that Pfizer was receptive to that.

We ate lunch at Haven’s Kitchen, with a meal prepared by Seamus Mullen.  Seamus is a chef – owner of Tertulia restaurant in New York and author of the cookbook, “Seamus Mullen’s Hero Food: How Cooking with Delicious Things Can Make Us Feel Better” – and he has RA.  He taught us some of his tricks in the kitchen that he uses to make cooking more RA-friendly, and made us a delicious meal of cucumber gazpacho, raw kale salad, curried chicken (tofu for me) and ginger rice, and almond cake.  Seamus is going to serve as the spokesperson for the Rethink RA campaign.  The meal was delicious, although it put us all into a bit of a food coma for our afternoon sessions with Pfizer. 

Fellow attendees were Britt Johnson (The Hurt Blogger), Angela Lundberg (Inflamed: Living with Rheumatoid Arthritis), Marianna Paulson (A Rheumful of Tips), Shannon Ragland (representing the Rheumatoid Patient Foundation), Dana Symons (at the Water’s Edge), and also included two of my fellow HealthCentral RA bloggers, Lisa Emrich (Brass and Ivory: Life with MS & RA) and Cathy Kramer (The Life and Adventures of Cateepoo).

Our program for the day

I have to say, it was comforting to be around others who were totally stiff, standing up at the end of lunch and were also battling RA and the humidity.  By the end of the day, my lupus was having a field day with all the fluorescent lighting.  I had a headache and went back to the hotel to lie down, but was able to rally for dinner with a few of the bloggers.  They checked out Time Square afterwards – I went back to my room to prepare for my 9 a.m. flight - since I’m moving to New York in a few months, anyway.

The highlight of the day was getting to spend time with my fellow bloggers, because it is so rare to be in the company of people who get it.  That was really awesome!  It was nice to share our stories and not have to provide cliffs notes about everything.  I’m grateful for the connections I made with the other bloggers.  So thanks to Pfizer for bringing us together. 

I hate to admit that I am still recovering, but flying to New York on Thursday night, having the summit and then hanging out with the other bloggers all day Friday, and flying back to Michigan Saturday morning was a bit much for me, but totally worth it!  

In some ways, this experience made me realize the intricacies of this disease.  The need for rest, healthy food, exercise, and sticking to your medication regimen.  It also made me realize that communication needs to occur on various fronts – with you and your doctor, with you and your friends and family, with you and your community of support, and with you and others involved in the illness experience, such as the pharmaceutical companies.  This experience also helped to underscore the complicated nature of the healthcare system, and what pharmaceutical companies can and cannot do.

I hope to be included in more things like this in the future!  What a great opportunity, interacting with a pharmaceutical company, and getting to meet other RA bloggers!

*In the effort of full disclosure, my travel and lodging were paid for by Pfizer/TwistMedia.  However, it was my choice to write about the experience.

Monday, June 3, 2013

Chronic Illness And Decision Fatigue

I am a notoriously terrible decision maker.  Just ask my boyfriend.

But the reality is, I am good at making the big decisions, but when it comes to things like what to make for dinner or where to go, I just don’t care.

I mean, I do care, but I don’t.  Because to me, those little things don’t matter so much.

As chronically ill people, we make so many decisions.  All the time.  And most of the time, they are big important things that can really impact our lives.  Like medications, procedures, you name it. 

And the thing is, by the time I’ve made all of the important decisions, I don’t feel like having to make more decisions.  

It’s decision fatigue. 

And I have a feeling that a lot of us with chronic illnesses experience this. 

Decision fatigue can happen to anyone, but seems particularly apt in the case of chronically ill people.

Being the Type-A-er that I am, I have always had a hard time saying “no”.  In the past, this has caused me to overcommit, to the point of being extreme.

Over the past year, however, I think I have done a better job of saying “no” to things or skipping things that would be an energy suck that are not worth it. 

Mainly, though, I have had a significant amount of time where I’ve been unable to function, which has necessitated clearing my schedule of everything but the most necessary things that I have had to do. 

This, of course, ebbs and flows, but there are times when my body says “no” for me.  When I don’t have any other choice but to say “no”. 

And it is still hard for me to say “no” or to admit that I can’t do everything and have to pick my tasks wisely. 

And sometimes, even when you want to do something and you do it, you have to be okay with the consequences.  

I have to accept the fact that when I fly to New York on Thursday evening, have an event there on Friday, and fly back to Michigan on Saturday morning (necessitating getting up at 6 a.m.), I am going to pay for it.  But it was totally worth it.

There are other times, though, when doing something just isn’t worth the price you pay. 

And that’s why we have to pick our battles and commitments wisely.
There are certain things I won’t give up on, no matter what.

But there are other things that just aren’t worth the cost.  

This is a really hard fact to accept.  And I’m totally sure I’m there yet.  But every time I overdue it, my body rebels.  And reminds me that I’m sick and don’t have unlimited energy stores. 

So many of us suffer from regular fatigue, and I guess decision fatigue is just another part of being chronically ill.