#ChronicLife Redux

Britt, TheHurt Blogger, came up with this idea to live tweet her life with chronic illness on Twitter for 48 hours.  I was so inspired by the amazing interactions that were created because of it that I decided to do my own version of #ChronicLife. 

I will include all of the tweets here so that you can see them if you missed them while I was live tweeting, or if you want to take a look at them again.  They are presented with the most current listed first.   

I learned a lot from this experience.  I learned that there a lot of people out there, aside from my mom, on both FB and Twitter that follow my story.  I learned that my disease is not in control and that there is a strong likelihood that my current medication regimen is no longer working. 

More than anything, though, I was reminded once again about the robust chronic illness community that exists online, and that has helped me so much over the last seven years.

This experiment went beyond lupus and RA, and included others living with other chronic illnesses, as well. 

This experience is so much more than a hashtag.  It is a movement toward greater awareness and advocacy, so that those with other chronic illnesses can see that our experiences are similar, and so that those without chronic illnesses can get a small glimpse into what our lives are like, living with chronic illness.   

I truly want to thank everyone who supported this effort, who favorited and retweeted, and who followed along on the journey.  This wouldn’t have been possible without all of you.   

Thursday, February 12, 2015

Just want to thank everyone who joined in on this #ChronicLife journey the last two days. I’m grateful for the support. Will blog next week!

I hope people don’t view the last two days as me simply complaining. Wouldn’t be doing this if my life wasn’t impacted by illness. #ChronicLife

Zonked out again. Just got up for meds, etc. Wondering when this cycle is going to stop. Work/school, eat, sleep is all I do. #ChronicLife

Veggie gumbo. BF made a double batch over the weekend so we’d have leftovers for a few meals this week. #ChronicLife

This is the face of pain. Sexy, right? I wonder where this falls on the pain scale. #ChronicLife

Today was a real struggle. Lots of pain and fatigue and I pushed myself too hard. Looking forward to the weekend. #ChronicLife

Invisible illness sucks. I could have used some extra help and kindness today, but I look young and healthy. #ChronicLife

Do I look as tired as I feel? No spoons left whatsoever. #ChronicLife

  

 Two classes down, one to go. And I need a nap badly. Really badly. #ChronicLife

One class down, two to go. And all I want to do is go to bed. #ChronicLife

I have come to find cross-body bags more comfortable than regular one-shoulder bags, but school… #ChronicLife

 10 minute walk to subway, 30 minute subway ride, 30 minute train ride, and 20 minute walk to campus. Finally at school! #ChronicLife

Escalator was off and didn’t feel like waiting for the elevator, so I walked up the escalator. Big mistake! Could barely walk. #ChronicLIfe

Good morning! Love my @Keurig so I don’t have to battle with a heavy coffee pot. #ChronicLife #coffeeaholic

 Didn’t sleep well at all. Will probably be running on fumes today. #ChronicLife

Wednesday, February 11, 2015

Signing off for tonight. More #ChronicLife bright and early in the morning. Are you all ready for school? Don’t worry, I’m not tiether.

As is my MO lately, I crashed at 8:30. BF just woke me up to brush my teeth and take my meds. #ChronicLife

 Roasted veggie pizza and veggie meatballs. Courtesy of the BF. He’s so good to me. #ChronicLife #mymancancook

Post shower #selfie. I was too tired to shower this morning. Now it’s pajama time. #ChronicLife

As tired at the end of the day as I was at the begging. That means fatigue is bad. But at least it’s still light outside. #ChronicLife

This struggle is for real. Even the good days can be a struggle. Working with illness is a struggle. We power through. #ChronicLife

There are bright spots. This makes me happy beyond words: http://medicinex.stanford.edu/medexed-speakers/... #ChronicLife #medx Crazy that people care about my story

You’re hearing it here first: After being on my longest running medication regimen, I believe it has stopped working. #ChronicLife #realtalk

I’m exhausted already. This is one of the most difficult part of living with these diseases. Battling fatigue. @ChronicLife

Been awake and morning meds have been on board for two and a half hours. And I still feel like I am wading through jello. #ChronicLife

10 minute walk to subway. 25 minute subway ride. 20 minute walk to work. Is it bedtime yet? #ChronicLife

Only had a seat on subway for half the time. Took all my energy to hold myself up. #ChronicLife

No makeup this morning. No energy and moving at a snail’s pace. I’ve got to conserve save my spoons for the commute. #ChronicLife

Let my #ChronicLife commence. Up, but not at them. Super stiff and still in zombie.

Social Media And Chronic Illness: Keep Facebook Free For Non-Profits

I am writing this post because CreakyJoints has brought it to the attention of its page followers that Facebook has changed its algorithms, which in this case means that it changes the way pages are seen. 

Because of this change, at most only 1% of page followers will see any given post. 

For example, due to this change, of CreakyJoints nearly 70,000 page followers, at most 700 will be able to see any given post.

For large non-profits that have the budget to pay for Facebook ads, this change won’t really impact them. 

But for smaller non-profits who do not have a budget to pay for Facebook ads, and who rely on their page followers, this change means that their reach is going to be significantly smaller than it used to be (read from 70,000 to only 700). 

CreakyJoints isn’t the only site that will be impacted by this change.  Many of the chronic illness pages that I follow on Facebook will be negatively impacted because of this policy.

Facebook is great in many ways.  It connects people from around the country and world that would not know each other otherwise.  And this can be so critical when dealing with a chronic illness.

But Facebook has certainly struggled over the years with constantly changing privacy policies, and now policies that focus solely on the bottom line rather than on keeping Facebook free for those who need it to be. 

There are Facebook haters everywhere.  There are even “I Hate Facebook” groups on Facebook (which is a little contradictory, but oh well, they do exist). 

So whether or not you hated Facebook before, you might want to hate it now, because it severely limits the posts you will see from the pages that you like, and disregards the needs of non-profits, many of which you may be a supporter of. 

It’s time that we stand up to Facebook collectively, and demand that they change the algorithms so that they don’t disproportionately have a negative impact on non-profit organizations, and in this case, specifically, patient advocacy organizations.   

CreakyJoints has a petition on change.org that has collected over 16,500 signatures in the past two weeks.

25,000 signatures are needed in order for the organization to be able to sit down with Facebook and voice concern about this policy in person.    

For more information about this, or to sign the petition to encourage Facebook to change the algorithm so that it does not negatively impact non-profits, visit: https://www.change.org/petitions/keep-facebook-free-for-non-profits.   

Patients For A Moment: Social Media Edition

For the July/August 2013 edition of Patients For A Moment, I asked bloggers to talk about the influence of social media on their illness experience.  They could either write one statement in no more than 140 characters and explain it, write a post that had many statements in no more than 140 characters each, or answer the question, “How has social media impacted your illness experience?”  Any and all iterations of this were fair game, and there were some great responses:

                                                                                                                  

The always entertaining Duncan Cross came up with a very creative “twitmeter” in relation to his IBD, and also discusses the importance of social media, in the post, “PFAM: Social Media”.  Duncan, I like how you think!

Sarah Bramblette, of Born2lbFat, in the post, “Healthcare and Social Media – Empowering Patients”, traces her social media evolution, and combines social media into her post.  Thanks, Sarah, I really enjoyed reading this!   

At My Brain Lesion and Me, Rhiann Johns talks about the positive experience she has had with social media and its ability to connect people even when in the throws of illness, in the post, “Social Media and the Chronic Illness experience”.  Thanks, Rhiann, for sharing!

Ms. Rants, of the blog, Chronic Rants, writes in the post, “Finding health solutions outside the doctor’s office”, about how social media has provided the answers to some questions that doctors have not been able to answer for her. Thanks for your post, Ms. Rants!

                                                                                                                                                              

Thanks to all who submitted posts for this edition!

If you didn’t submit a post but have a related one, please feel free to link it in the comments – only related posts, though, please.

The next editions of PFAM will be September 15, 2013.

I am in need of hosts for the September, November, and December editions.  Please e-mail gettingclosertomyself@gmail.com, if you are interested in hosting.  Or you can throw in your hat for the 2014 editions, as well. 

Lupus? I Don’t Need No Stinkin’ Lupus! (But I Do Need A Small Favor)

(Please read this post to the end…)

Try as I might to ignore it, lupus seems to have another plan for me at the moment. 

I am having photosensitivity that is ridiculous.

I wanted to post a photo, but it’s kind of hard to see the red, blotchiness of my skin on my phone camera.

This is in part due to the fact that I hate sunscreen.  This is bad enough as a fair-skinned, redhead, but even worse for someone who has lupus.

I haven’t found a sunscreen that I like, and I suspect that I may be partially allergic to something in it.  If you have any recommendations in this regard, please let me know.  I think I have tried every drugstore brand that exists…

Then there is the fatigue, with a capital “F”.

I think part of the fatigue has been from basically having to start Humira all over again, but part of it is definitely lupus.

My rheumatologist has always said that fatigue is the hardest symptom to treat.  And when it’s the type of fatigue that caffeine doesn’t touch, and it doesn’t matter how much sleep you get, you are still tired, fatigue is definitely an insidious symptom. 

I guess this shouldn’t surprise me, because when I first got sick, even when my pain was down considerably thanks to steroids, I was still tired all the time.  It’s one of the first symptoms to come, and one of the last to go.

I have also had significant pain near my bottom right rib.  That’s the telltale sign for me that I’m flaring.

Granted, so far it hasn’t been a massive flare where I can’t get out of bed.  But it’s just enough to remind me that while the Humira is working on my arthritis, lupus is taking advantage of the opening.

And part of it may actually be from the Humira, as one of the side effects is a “lupus-like syndrome.”

This is something that has flummoxed me since my rheumatologist prescribed Humira for me.  I already have lupus.  Why would I want a “lupus-like syndrome” to go along with it?

And given the extreme heat and humidity we have been having, I feel lucky that I am not having a worse flare. 

Anyway, this laundry list is my way of confirming for myself that lupus is alive and well in my life.

I have a lot going on in the next month, traveling several places – Martha’s Vineyard by way of New York with my boyfriend and his family, Los Angeles to be in my friend’s wedding, and several trips to my parents’ to secure my bridesmaid’s dress.

I just hope that with all that I have going on, I will be able to keep this flare at bay.

I’ve got enough going on.  I don’t need no stinkin’ lupus.

But I do need a small favor.  If you would, could you please follow the link below and vote for me to receive a scholarship Mayo Clinic’s Social Media Summit?  I greatly appreciate your support in this:

http://socialmedia.mayoclinic.org/2012/07/24/leslie-r-scholarship-contest-essay/