Adventures And Mis-adventures In Rheum Land: Graphic Novel (Version 2)

As promised, here is the computerized version of the graphic novel I made for my Illness Narratives class.  

Obviously this does not contain my whole story, but I am seriously considering continuing with this.

What do you think?

Interview About My Academic Work On Support For The Short

I don't always share that much here about my academic work, but I was recently interviewed about it, which is really exciting! 

If you are interested in listening to the interview, it can be found at the Support For The Short website by scrolling down until you find my name, or you can directly listen to Part 1 and Part 2 of the broadcast. 

Adventures And Mis-adventures In Rheum Land: Graphic Novel (Version 1)

For my Illness Narratives class, we had to create our own graphic novel.  I got really into it, so I drew it out and then computerized it.

I am sharing the hand-drawn version today and will share the computerized version later this week.  

I had never read a graphic novel before, and I never realized the amazing and powerful stories that can be told through them.  It has made me re-think the form in which I write my memoir.  Because you can tell a story chronologically and a graphic novel can make it pop, whereas just text can be a bit monotonous. 

Add steroid-induced stupidity to the list, as I spelled steroid wrong throughout. 

If you are interested in learning more about graphic novels, there is a whole genre about illness.  Specifically, I recommend Mom’s Cancer by Brian Fies, Stitches by David Small, and Cancer Vixen by Marisa Acocella Marchetto. 

I would love to hear your thoughts on mine, and as I said, stayed tuned for the computerized version.

What Do You do When you’re Doing Pretty Well?

I’m in sort of a strange place right now.

I had my last appointment with my rheumatologist in Michigan in August, then I had my first appointment with my new rheum in November and a follow-up in January. 

As of now, I don’t have another appointment scheduled. 

I am weaning off of methylprednisolone…finally!  I’ve gone from 8 mg a day, to 6 mg for two weeks, 4 mg for two weeks, and I’m decreasing to 2 mg at the end of this week.  It’s a long process, which will be the subject of a post sometime in the next few weeks. 

I certainly continue to have aches and pains, and even swelling, especially in my knees, hips, hands, and wrists. 

I don’t think I’m in remission.  I’m on too many meds, and am not sure where I would be without them.  But from this combination of meds, my liver levels are normal for the first time in eight years.  My kidney levels continue to  border on abnormal, but hold steady enough to not be a concern at this point. 

I recently had a rash on the side of my neck and shoulders that turned out to be fungal, a minor result of an overactive immune system that is being held at bay by meds that suppress my immune system. 

This is the struggle for those of us who have these kinds of diseases.  We have immune systems that mistake our own bodies for foreign invaders and the only real remedy is to take meds that deplete that same immune system.   

So in reality, while I might be in an okay place, these illnesses are never far from my mind…or my heart…

A few weekends ago, I was commenting on the fact that I’ve been doing pretty well, and the next day, I could barely get out of bed.

Every time I get cocky, my illnesses smart me!

I know that where I’m at right now is probably not likely to be a place I will be forever.  And I hope that when I get to a difficult place, I am able to cope with it.

Trust me, I’m not complaining.

But it’s hard to know what and how to feel about this period of comparative wellness, a place that I really don’t feel I have ever been in the last seven years. 

I definitely know that I have these illnesses.  It’s a constant game of tug-of-war. 

And hopefully I’m not totally jinxing myself by writing this post.  

Patients For A Moment: Winter Blues Edition

This month, I asked people how they cope with the winter blues.  This has been a particularly long and hard winter, especially in my home state of Michigan and here in New York.  And those who know me well, know that I’m a summer baby, so needless to say, I’ve had enough.    

While Iris Carden of the blog Sometimes, it is Lupus, reminds me that it’s not freezing cold everywhere in the world right now,  she does a good job of providing an overview about how the weather, and specifically temperature, impacts her lupus, in the post Ain’t No Cure For The Summertime Blues.

Duncan Cross is coping with winter by going to Florida.  He says he used to be skeptical that warmer weather can be helpful to health, but now he understands why. 

Rhiann Johns of the blog My Brain Lesion and Me, talks about how the cold increases her pain, and that this winter, she is staying active in order to manage it, in the post Don’t be SAD...Banish Those Winter Blues.

Migrainista Emily talks about the fact that winter can be fun for awhile, but this winter has just been too much, in the post Beating the winter blues.  

Thanks to all who submitted posts for this month.

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.

Next month’s PFAM will be hosted by Duncan Cross.

PFAM Is Here February 15, 2014!

It’s that time of the months again, and I’ll be hosting this month’s edition of PFAM.

The theme/question for this month is: How do you cope with the winter blues?

We just entered February, and it has been a really hard winter already, even though we are only just about half way through.

How has this harsh weather impacted your health, and your life in general?    

If you would like to submit a post, e-mail the following to gettingclsoertomyself@gmail.com:

Your name (as it should appear)

Your blog’s name

Your post’s title

Your post’s URL

And make sure you put PFAM in the subject line.

All submissions wishing to be considered should be received by 11:59 p.m. on February 14, 2014.

Sabi Folio Pill Case*

I’ve actually been looking for a new pill case for awhile because the one I used before just wasn’t meeting muster.  It was clunky and hard to open.  And blame it on my lupus brain, but there were several times when I mixed up the end, and ended up taking Saturday’s pills instead of Sunday’s or vice versa.  And if you are on a pill that varies, this is a huge problem.

So this one is so out! 

 Sabi is so in! (Pills not included!)  

 Pros:

+ Discrete

+ Sleek design

+ Easy to open

+ Won’t come open on its own

+ I did a shake test, and you can shake the thing around like it’s a maraca, and all of the pills stayed in there respective grooves

+ Can’t get days confused

+ Holds a full week of pills, with a.m. and p.m. grooves for each day

+ When held vertically, looks like one of those fancy notebooks

Cons:

- Not see through, which means you have to be a bit more vigilant about making sure you take your medication

- Fits a relatively good amount of medication, but depending on the size of the pills you take, may not fit all of them

This Folio sells for $24.99.  They have a larger version for $29.99.  These are a bit on the pricey side, but they really have a great design and are much better than the plastic job I used to have (see above). 

They have some other really cool pill holders, as well.    

For more information on Sabi products, visit http://sabi.com/.

* Sabi was generous enough to provide two Folio cases free of charge, one for me and one for a lucky reader of my blog.  I also mentioned Sabi in my Some Of My Favorite (Chronically Ill) Things For This Holiday Season  post.