Thursday, July 23, 2015

Summer Giveaway Winners

I’m excited to (finally) announce the winners of my summer giveaways. 

The winner of the Scough: Kathryn

The winner of the Make Great Light Filter: Joyce

The winners of the Coloring Books: Carly and Britta

If you are a winner – if you’re not sure, I commented on each comment letting you know if you were a winner or not) – please e-mail me ASAP your full name and contact information to gettingclosertomyself@gmail.com, and I will put you in touch with the person from the company who will make sure you get your prize.

Thanks so much to everyone for entering.  I hope to have some more giveaways again soon!

Tuesday, July 21, 2015

Am I Medication Dependent?

A few weeks ago, I forgot to take my meds.  Well, more accurately, I accidentally took my evening meds in the morning, which meant I couldn’t take my morning meds that I missed.  No harm, no foul, right? 

WRONG! 

The next day, before and after taking my morning meds, I felt awful.  I was in pain all over and felt nauseous and dizzy.  I stayed in bed all day.  It was really terrible.  I felt like I was going into a flare. 

And I had a frightening realization for the first time ever.

I am medication dependent. 

I can barely go one day without meds without feeling terrible.  Seriously?  So when I saw my rheumatologist recently, I mentioned to her what had happened and she basically agreed that, that means the meds aren’t working as good as they should be.  This is really frustrating.

The goal is for me to be stable, but one day of missed meds and feeling awful means the opposite of stable.

I’ve also learned that I can’t take my morning meds much later than 11:30 a.m., or I will feel bad all day.  So there is a very small window in which taking my daytime meds actually works.  I have a similar issue with nighttime meds in that I can’t take them much beyond 1 a.m., but the difference is that my nighttime meds are more for helping me sleep and less about treating my lupus and RA. 

After discussing these issues, my rheum talked about clinical remission and how it is still possible for me.  I am not convinced.  How can I go barely a day without meds without being incapacitated and believe that remission is a possibility in the near future?

I don’t even like thinking about the term remission because I don’t really know what it means.  I mean, I know what remission is, but it seems like such a lofty goal, a goal I’ve never really considered pursuing before. 

For me, the bigger goal is preparing my crazy wired body for pregnancy sometime in the next several years.  And whether that comes with remission or not is anyone’s guess. 

I very rarely make mistakes in taking or forgetting to take my meds altogether.  But it’s frustrating to know that I don’t even have a day grace period. 

It means I can’t mess up.  It means I have to be perfect all the time.  And I guess that may be one of the reasons that I have always focused on medication above other things, like diet and exercise.  Now that I’m back to really thinking about those other things, it’s even more annoying that I’m medication dependent. 

It’s much easier to take meds when you know they work, or you have the expectation that they will work.  And when you experience the meds not working because you didn’t take them, it’s sobering to realize that your health or lack thereof is totally dependent on meds and your ability to take them.

Friday, July 3, 2015

Summer Giveaways And Promo Codes

I wanted to do something fun for summer, so I’m providing you with some promo codes and giveaways for a few products that I have been introduced to recently.

Scough*

Scough is this super cool company out of Brooklyn.  They’ve taken wearing a mask to a whole new level.

As someone who has had to wear a mask on a plane before, the Scough, while there, is less obtrusive than simply wearing a mask.  And it doubles as a scarf, both when you’re using the mask/filter and when you are not.  I had to wear a mask on plane one time when my doctor told me that was the only way she would clear me to travel.  It was embarrassing, uncomfortable, and all around annoying.  As someone who is also very sensitive to smell due to lupus (and as someone who frequents the NYC subway system), I could also see how this can be useful in situations where I am overcome by odor to the point of getting nauseous. 

Scough has generously offered to provide one lucky reader with a free Scough. 

If you enter and don’t win the Scough in my giveaway, but are interested in getting a Scough for yourself, you can receive 50% off your order when you sign up for a one year filter subscription – you pay $15 each and receive a new filter every three months – along with a purchase, using leslierott50

If you don’t want to purchase a subscription, you can use leslierott15 and receive 15% off any order. 

For more information on this product, check out http://wearascough.com/.





Make Great Light NaturaLux Fluorescent Light Filters**

Many of us with lupus, including myself, experience photosensitivity from fluorescent lights.  This is a really pesky symptom, especially considering that fluorescent lights are everywhere, including in most hospitals and doctors’ offices. 

I really wanted to try this product out, but currently do not have any fluorescent lights in my immediate environment.  I would love to try it out once I do.

However, Make Great Light has graciously offered to extend their offer to me to one of my readers.  One lucky reader will win either a panel filter or a set of tube filters.

For more information on this product, check out http://www.makegreatlight.com/.       

Adult Coloring Books***

I’ve actually been looking for adult coloring books lately, when I happened to be contacted about them. 

Two lucky readers will win either a Stress Less Coloring – Flower Patters: 100+ Coloring Pages for Peace and Relaxation or Stress Less Coloring – Mandalas.



“League of Mortals” by Duncan Cross****

I recently reviewed Duncan Cross’s novel “League of Mortals”.  He has provided a coupon code – JD55B –for $2 off the book on Smashwords.  The code expires July 10, 2015.   


***

Promo codes are yours to use. 

If you would like to enter to win the Scough, please post a comment in the comments below about why such a product would be helpful to you.

If you would like to enter to win the Make Great Light filter, please post a comment in the comments below and explain why the filter would be helpful to you.  You don’t need to have lupus, but should have some sort of light sensitivity. 

If you would like to enter to win one of the coloring books, please post a comment in the comments below about what you do to relieve stress, and how coloring might aid in that.

You can enter to win each of the giveaways, but please comment once for each.

If entering for more than one giveaway, please indicate your preference, as different winners will be chosen for each prize.

Entry will be open until July 17, 2015.  Winners will be notified in reply to their comment(s).

Disclosures:

* Scough provided me with two free samples to try out.

** Make Great Light offered to provide me with a free filter to try.  Since I was unable to accept this offer given that I am currently not exposed to fluorescent lights, they agreed to extend that offer to one of my readers. 

*** Adams Media provided me with four copies of some of their older coloring books for free, and are also planning to provide me with free copies of their two new coloring books once they are released.

**** Duncan provided me with a free copy of his book to read and review.  

Tuesday, June 30, 2015

League of Mortals*


Today I’m honored to have my blogger friend Duncan Cross on Getting Closer To Myself.  Duncan is the author of “League of Mortals”, a semi-autobiographical novel about a main character who is diagnosed with Crohn’s Disease.

The book showcases Duncan’s unique brand of humor, and it also is a very raw and real portrayal of a high school aged character whose life is detoured by chronic illness. 

As of late, novels with chronically ill main characters are kind of becoming a thing, but those books are not written by people with chronic illnesses, so the experience that Duncan brings to the story is so powerful and important. 

Just be warned, there’s a lot of talk about shit, as in poop, and other bodily functions.  

Without further ado…

First off, can you tell my readers a little bit about yourself and your illness story?

DC: I grew up in Florida, and was a pretty normal kid, though maybe a little too much of a smart-ass. I was diagnosed with Crohn’s Disease in my senior year of high school – it came out of nowhere, and totally wrecked my college and career plans. Still, I spent several years trying to pretend I wasn’t sick, until about 2003, when I started a flare that didn’t end until I had surgery in 2006. That forced me to really grapple with illness, to quit pretending I could pass for normal. I found a lot of help online in various communities, then started my blog in 2008. Almost everything about my illness since 2008 has been documented on the blog, but technically I’ve been in remission since the 2006 surgery.

How did “League of Mortals” come about?

DC:  My freshman year of college was terrible; it was really bad, mostly because I was put on a mega-dose of prednisone. I started writing about it as a form of self-therapy, but I wanted to leave the illness part out. I wasn’t comfortable talking about my disease, so I had this character who glides through his freshman year, leaving a trail of destruction in his wake. And I realized none of it worked unless you understood that he was sick. I started writing League of Mortals as a character sketch, to explain why Wesley does what he does, and realized it was a better story than the college novel. I still plan to finish the college novel – it's titled F.U.

Interesting title.  Why did you decide to write a work of fiction rather than a more traditional memoir type book that a lot of chronic illness bloggers tend to write?

DC: A few reasons... first, bookstores are stuffed with memoirs by sick people, but there are hardly any novels about chronic illness. Memoir is a crowded market for sick authors, but fiction is wide open.

Second, I think there's a brutal honesty in fiction that just doesn’t happen in memoir. There’s stuff in LoM that I would never have been able to write as straight memoir – but it’s important stuff. Fiction gives me the cover to be incredibly raw and honest about my illness and my life. The paradox is that I think readers get a more realistic sense of illness from the book being fiction than I would be able to provide in memoir.

Third, the events in my life did not happen in a particularly meaningful order. Even though the book is semi-autobiographical, some of the stuff did not happen my senior year of high school – e.g. prednisone. By reorganizing those events, I could tell a much better, more important story. Most people’s lives do not have a narrative arc – mine doesn’t, as far as I can tell. But the need for narrative is vital to how and why we read. For some memoirists, that need pushes them to write inane things about their lives, so that it all makes sense in the end. Fiction lets me control the narrative – lets me reimagine and redefine what my disease means – without the urge for self-justification.

Wesley’s character really highlights what it’s like to be a young person with a chronic illness – and there aren’t that many of those characters out there.  We see him transform, both based on his own experiences, but also based on the experiences of those around him and their reactions to his chronic illness.  Some may say that his transformation was negative, but I think those of us with chronic illnesses understand that there are a lot of varied emotions that come with being diagnosed with an incurable disease.  How did you balance being true to the character, while simultaneously making him seem sympathetic, as well?

DC: One of my least favorite ideas is that sick people get rewarded at some point for being ill: “That which does not kill you”.... I didn’t know how the story was going to end when I sat down to write LoM, but I knew I was not going to reward Wesley for being sick. I think he just about breaks even: he’s not a better person by the end of story – not stronger, not happier, not smarter. Just a different person. And that is such an important idea for me.

As for sympathetic, that was indeed a challenge. In early drafts, I focused mostly on medical stuff, and it made for brutal reading. I realized I had to give a sense of Wesley’s personality before he got ill, so that you understand where he’s coming from when things get really bad. I found that writing about him as a whole person – talking about music and his grandparents and what he was reading – made him a lot easier to get along with. I know it seems like filler, but those bits are important to understanding Wesley.

The character of Mrs. Strunkel is just awful.  Truly.  There’s always got to be one in every bunch.  Was there someone in your life that made your own life miserable like that?  

DC: She is indeed based on a real person who made my life very difficult. But keep in mind that Mrs. Strunkel thinks she’s a good person. She believes the things she does are important and just and good. In a perverse way, illness maybe does make her a better person in the end.

I think you do a really good job of capturing how healthy people have difficulty understanding what it’s like to have a chronic illness.  The character of Wesley loses a lot of weight as a result of being sick, and every woman he encounters tells him how much they would love to be able to lose weight.  In writing this book, what did you want to get across to your readers about the experience of Crohn’s Disease, in particular, and chronic illness, in general?

DC: I wanted to be honest about illness. I wanted to create a character whose illness was not shorthand for some virtue or flaw in psyche – the way Beth in Little Women is sick because she’s a perfect little angel. I didn’t want the book to be just about Crohn’s – I wanted it to capture as broadly as I could the experience of chronic illness. I actually tried to write a version where the diagnosis was some made up disease, but then I had to make up symptoms and treatments and drug names. It got exhausting, so I went back to what I know, but the specific diagnosis – Crohn’s – is not the main thing driving the story.

I agree in that I, a person who has lupus and rheumatoid arthritis – definitely have had similar experiences when it comes to chronic illness that you talk about in the book.

Here is the million dollar question: How much of the book is fact and how much of it is fiction?

DC: For the same reasons I chose to write it as fiction, it gets really tricky for me to admit what parts are totally factual. But it’s all true to my experience of illness, if that makes sense.

Thanks for being here today Duncan!

You can purchase a copy of “League of Mortals” from Amazon and Smashwords.

Duncan has graciously afford to provide a coupon code for my readers.  You can get $2 off the book from Smashwords by using the code JD55B. The code is good through July 10, 2015.

And you can follow Duncan at http://duncancross.net/.

* In the effort of full disclosure, I received a free copy of this book courtesy of the author. I also recently got to meet up with Duncan and he treated me to dinner.  I However, my choice to have Duncan here was my choice, and had to do with my personal opinion of the book.  

Sunday, June 21, 2015

Dear Dad (#3)

Dear Dad,

I haven’t written in a while, but am doing so today in that I am able to find comfort in my own thoughts and words.  And in my memories of you.

Out of all the firsts that have come so far this year, I think Father’s Day was the hardest.  Maybe it’s the fact that over the past month, I have been bombarded with e-mails and TV commercials about what to get dad for Father’s Day. 

For your birthday, I could suffer in silence.  But on a day when everyone is celebrating their father, I can’t celebrate you.  I can’t tell you how much I love you.  I can’t tell you all of the things that have happened in my life over the past 10 months, not all of them good.

I wanted to reply to all those e-mails and tell the offending companies that I don’t have a father to celebrate anymore, so stop sending me stupid e-mails that remind me of what I’m missing and make me feel worse.

Deep down, I know I’m not the only one suffering through Father’s Day.  I know I wasn’t the first person to lose their father and I know I won’t be the last, but it’s different when it’s you.  Because in a way, the pain feels singular.  It’s my own, unique brand of pain, and I can’t shut it off.     

As time goes by, things are supposed to get easier.  But sometimes, they don’t.  Sometimes I get so angry about what happened to you.  About the storm, about the police not doing their job.  About the whole thing.  Sometimes, I want to punch someone.  I want someone to experience 1 millionth of the pain I feel right now, and maybe, just maybe, they would understand. 

If there’s anything that death teaches us, it’s that life is short.  It teaches us to remember to say I love you.  I wish I had told you I loved you more than I did.  I wish I would have cherished the memories more while you were here, as much as I do now that you’re gone. 

I wish there would be more Tigers and Red Wings games in our future.  The last time I was at a game until the other day, was with you when I was home visiting last June.  And you had the best time that day.  You were yelling all sorts of things, and embarrassing the heck out of us, but I would take all of the embarrassment in the world if it meant having you here. 

I’m going to Washington D.C. this week, and I find myself missing you all the more.  The one and only time I was in D.C. was with you, when you chaperoned our 8th grade trip.  It was one crazy busy day, and I’ve found myself wanting to back there for a long time, but it has a different meaning now that you’re gone. 

I guess it speaks to how much you touched my life, when seemingly any time I turn around, there are memories of you everywhere.     

We never know when life will end, and we need to make the most of it while we’re here.  But lately, I find myself depressed.  I can’t really put that much effort into reading or writing, two things that were formerly my passions.  I know this feeling will pass, but it’s hard. 

I hope that all those who still have their father alive will do what I regret I didn’t do.  They will tell them they love and care about them, not just on Father’s Day, but every day of the year.    

I love you daddy, and I miss you more than you will ever know.

Love,

Leslie

If you are interested in reading the other Dear Dad letters, you can read #1 and #2.

Monday, June 8, 2015

Maybe I Wasn’t Born To Run – But I’ve Got To Do Something

I recently got an idea in my head that my boyfriend and I should train for a duathlon.  A duathlon involves two out of three events between running, biking, and swimming.  I decided that swimming was totally out because I’m not a swimmer and don’t really enjoy the water.

The great thing about a duathlon is that the run is “relatively short”.  The specific race I was looking at was a two mile run, eight mile bike, and two mile run. 

To be clear, this was something that I wanted to do for myself, not in competition with anyone else.  I have been struggling with exercising ever since my dad died, so I thought that maybe having a concrete goal would be the motivation I needed.

So a few weekends ago, my boyfriend dragged me outside for a run.  We walked most of the way.  Try as I might, the running just sucked.  There’s no other way to put it.

I was so frustrated.  Even though two miles isn’t that long of a run for most people, I could barely run a block.  My boyfriend was very encouraging in telling me that I ran more than a block – it was more like three blocks. 

Three blocks does not two miles make.

I have never been a runner, not even pre-illness.  So why force myself to do this?  I don’t know.  What seemed like a good idea before, doesn’t seem like a very good idea now.  It seems stupid.

Who am I kidding?  I can’t compete in an athletic event.  I can barely run three blocks.

I’ve been inspired by blogger friends who are super athletic, but I’m realizing I have to get my own thing.  I guess right now, now that I’m no longer a student, I don’t know exactly what that is yet. 

I’ve considered simply walking the duathlon, rather than even try to run it at all.  Would that be such a bad thing?  Especially if I’m just doing this for me?

So I’m making a pledge to myself.  I’m starting small, going back to the basics.  I’m going back to my walk aerobics DVD, the one I used to do religiously, which kept me in the shape I wanted to be in. 

I guess somewhere along the line I got it in my head that that walk aerobics was for middle-aged women (no offense).  I also think that I became self-conscious doing it around my boyfriend – silly, I know.

The two mile walk takes 30 minutes and the three mile walk takes 45 minutes.  I have that time.  I’m unemployed, at the moment.  And I don’t have any excuse – not that it’s raining – I don’t even have to leave the house.

I have weights and a stepper in the closet.  They have never seen the light of day.  I bought them with good intentions, but even good intentions with no motivation spells disaster.

I don’t feel good about myself for a variety of reasons, but that’s another post.

So no more excuses.  I’m holding myself accountable.  It might not be running, but you’ve got to start somewhere.  And this lady is the most out of shape she has ever been.  I went from being a size zero to barely holding it in, in mediums (sigh).

Methylprednisolone was one of the worst things to ever happen to me.  I have what seem like permanent stretch marks on areas of my body that shouldn’t really have stretch marks.

So I might not be running.  I might barely be walking.  But I’m getting up and doing something.  If I don’t help myself, no one else will. 

Sunday, May 10, 2015

Can Subscription Services Be Helpful For Chronically Ill People?

For those who aren’t familiar with subscription services, there are online companies that you can pay for a subscription for a given type of item like food, makeup, and clothes.  The items are sent directly to your door.  There are so many subscription services out there now that you are bound to have heard of one them.

I have used two subscription services – Hello Fresh (food) and Stitch Fix (clothes). 

***


Hello Fresh is a subscription program where you get meals sent to you.  To be clear, YOU have to cook the food.  They send you recipes and basically all of the ingredients needed for each recipe and you make the meals yourself. 

This is great for people who may know how to cook but never know what to make.  For chronically ill people, this doesn’t exactly help if you don’t have the energy to cook.  But if you have a spouse who can cook, this saves time by not having to go to the grocery store. 

They have both a classic box and a veggie box.  You can get three meals for two people or three meals for four people.

I got a Groupon for this, so it cost me $20 for three vegetarian meals for two people, which would normally cost $59.

Overall, it was a fun experience getting to try random recipes.  We knew exactly what we were eating for three days, which was nice. 

At $20, this was a great value.  I am not sure how much of a great value it is at $59, other than the convenience of it.   At $59, it basically averages out to $10 a meal per person.  While that’s cheaper than eating out, we definitely can make meals on our own that cost less than that per person.

Like I said, this can be a great option for chronically ill people, depending on what your specific situation is.

The only thing you have to be careful of is that when you sign up, Hello Fresh automatically schedules your delivery for once-a-week.  You can change it to twice-a- month or you can deactivate your account.  But if you’re like me and you just wanted to try it once for fun, make sure you change the schedule – that is – unless you fall in love and want to receive a new box of food and recipes every week. 




Stitch Fix is a subscription service that sends you clothes.  You pay $20, which is applied to any items you buy – so if you order and don’t end up buying anything, you are out $20 – and you get five different items.  If you end up buying all of the items sent to you, you save 25%.  They provide a return package that you can use to send back any items that you don’t want.    

If you’re like me, and you are prone to getting stuck in clothes in the fitting room of stores because RA limits the range of motion in your arms, this takes that anxiety away. 

My first fix was a total bust.  None of the items fit right nor did I really like them.  Stitch Fix was nice enough to send me the next fix for free (they gave me a $20 credit), which was awesome.  Based on the things I really liked, and for the price, it made sense for me to purchase all of them the second time around.

They sent me a pair of skinny jeans.  I have been wanting a pair for a long time, but I hate jean shopping.  I won’t do it.  So even though the jeans were pricey, it was worth it to me because this is the only conceivable way I see getting jeans.  Plus, I’m petite, and lengthwise the jeans were perfect, which is saying a lot. 

I also got an amazing asymmetric sweater that can be either causal or fancy, and I have been wearing it everywhere.  It’s made of a really soft material and is heavy enough to wear as a spring jacket.  It also just looks really flattering. 

The clothes, even though I said I wanted the cheaper, the better, are pretty pricey.  But again, you are paying for the convenience of not having to go to the store, not having to potentially get stuck in an item you don’t want in a fitting room, and you can be upset in private if none of the items work for you.

I think the best advice is to provide a lot of feedback about what you are looking for.  You can put Stitch Fix into Pinterest and see what other people have gotten.  You can pin things and provide Stith Fix with the link, and they can send you items very similar to, or sometimes even the same as, the ones you pinned.  At the very least, they get a better idea of what styles you like.  Not to mention, there is an extensive profile that you fill out for them with your sizes and they provide groups of clothes that you can rate by what you like and don’t like. 

The other nice thing about Stitch Fix is that you can schedule them whenever you want and aren’t married to getting one every week or on a specific schedule.   

This is a great service.  I can’t say enough about it.  The quality of the clothes is high, the stylists really listen to you if you provide them with feedback, and you don’t have to leave your house to shop.  Dangerous, I know.  

If you’re interested, please use the following link –
https://www.stitchfix.com/referral/4484877 – as I get referral credit on my account.



***


I hope that this post has been helpful.  I know that many of us chronically ill people don’t have a lot of disposable income.  But subscription services may just be worth the extra money for the convenience of it all.    And I know that many chronically ill people look for ways to make life easier.   These services definitely do that.  Why do something that someone else can do for you?    

Wednesday, May 6, 2015

My RA Makeup Bag – Or How I Try And Look Good Even When I Don’t Feel Good

Every now and then I like to do somewhat of a more light-hearted or frivolous post that is still related to living with chronic illness.  Therefore, I have decided to share with you my makeup bag, and some RA-friendly products that I use.  

I have recently discovered that no matter how bad I feel, if I can do something to pep up my face a little bit, I end up feeling better.  Whether this actually works or is a placebo effect really does not matter.  But taking a small amount of time, literally two minutes, can make a huge difference.    


This is MAC's Miley Cyrus Viva Glam lipstick and lip gloss duo.

When this came out, I went online and ordered it without ever trying it on.  While it is bright, it seems to me to be almost universally flattering.  All you have to do is apply and go.  And because this is a little out there, you don't really need to do anything else to your face.  It is also pretty long-wearing, which is also a plus.



On days when I do not feel in channeling Miley, at the very least, I like to throw on some mascara that adds volume and length, and opens up the eyes.,



This is BareMinerals Ready SPF 20 Foundation in fairly light.

In terms of foundation, for fancy occasions I use a liquid foundation that provides more coverage.  But on a daily basis, if I want to look a bit more put together, I use BareMinerals. 

BareMinerals is known for its loose powder foundation.  The powder stuff gets all over everything and drives me crazy, so I opt for the pressed powder kind which is much cleaner to use.

Remember, SPF is super important!  And I pretty much hate sunscreen, so I love products that have the SPF built right in.  One less step and one less mess.  



Dry shampoo is a great way to freshen up your hair without having to wash it.  I end up using it more often than I care to admit, but for those days when it is difficult to lift your arms above your head to wash your hair, this is a must!  

Oddly, I feel like I finally have more self-confidence and higher self-esteem than I did when I was not sick.  It is all about owning it and working with what you have.

Sorry guys that this post has turned super girly, but it is what it is. 

Wednesday, April 29, 2015

Our First Place

I am super excited to finally share with you our apartment that is finally put together.  I shared pictures of the space when it was empty, and now I'm sharing pictures of it all done - until I come up with another project.  

Now on to the virtual tour.


This is what you see when you first walk in the door.  We have this cute little bar which doubles as storage for a lot of our cooking stuff since the space in the kitchen is limited.


This is a place to throw bags and is decorated with scrapbook frames that I made.


Right hand side of the kitchen.


Left hand side of the kitchen.


A's knife contraption.


 Kitchen art.


Living room and dining room.


Living room and dining room.


 Living room and dining room.


 Dining room and bookshelves.


Bathroom.


Bathroom art.


Bathtub and towels.  I like feeling like I live in a hotel, so I am anal about towel folding, much to A's chagrin.


Bed and accent wall that I created.


My dresser.

Well, that's that.  I am so glad I finally got the chance to share this with all of you.  Moving seems to take more time, energy, and money than you originally anticipate, and this post was no different!

Wednesday, April 22, 2015

HealtheVoices Conference 2015*

This past weekend, I had the opportunity to attend the HealtheVoices Conference in Jersey City, New Jersey.

I’ve never been to Jersey City before, and it was fun to see New York from the other side of the river.  I have to say, it looks better from that vantage point.

I think the best thing about these types of events is that it’s a chance to get to see each other in person. 

I got to hang out with friends Hurt Blogger Britt, Titanium Triathlete Dina Neils, Rheumablog Wren, Carla Kienast at Carla’s Corner, Mariah of From This Point Forward, and Angela of Inflamed, and I got the chance to meet Aimee Espinosa (Fit Aimee RA), who also has RA.   

I also had the opportunity to see Jenni Prokopy, aka Chronic Babe again.  And I got to meet Kerri Sparling of Six Until Me, who I have followed for years, even though I don’t have diabetes.

I also got to see some of the Janssen folk that were at the Joint Decisions Empowerment Summit in Boston in November. 

The unique thing about this conference is that it brought together various disease groups, including, aside from RA, HIV/AIDS, Crohn’s disease, and metastatic breast cancer. 

It’s not often that you get the opportunity to interact with so many other people from different illness groups.  What struck me the most was that, despite having different diseases, our experiences are very, very similar. 

This was the first year of this conference, and overall I think it was a good start. 

There was a relaxation room, plenty of blankets and hot and cold packs were on hand, food was always available, and overall, it felt like there was an effort made to understand our needs. 

Our RA group had some issues with the chairs.  I felt a little high maintenance having to get up and stretch every hour practically.  But then we commandeered some comfy chairs that were much more manageable. 

I learned a lot of useful information during this conference about the importance of social media, the importance of what we do as bloggers by sharing our stories and advocating for others, and how to be the most successful at blogging. 

I hope that the Everyday Health and Janssen folks got to understand a bit more about the illnesses that were represented at the conference, especially RA. 

It was sad to say goodbye to friends at the end of the conference, but we’ve built lasting relationships that have been fostered both online and in person. 

And the in-person aspect can continue to be fostered at conferences and events such as the HealtheVoices Conference.


*Janssen paid for my travel expenses for the conference; however, all thoughts and opinions expressed here are my own. 

Wednesday, April 1, 2015

Biding My Time

The last few months have been a combination of busy and not busy. 

We found an apartment and moved.  I’m still working on my last few projects and then I will share the finished product with you. (Busy)

I changed medications and got a cortisone shot in my hip. (Busy)

My job ended. (Not Busy)

I’ve been applying and interviewing for jobs. (Busy)

I’m just finishing a break from school. (Not Busy)

As busy (or as not busy) as I’ve been, I have days where I am just at home.  It’s not that I have nothing to do.  That’s not the issue. 

The issue is that it feels weird not to be going to a job everyday. 

It feels weird not to be constantly around other people. 

I’m okay on my own.  It’s not like I can’t handle it.  It’s just a matter of feeling like I should be doing something besides sitting at home getting school stuff done.

I’m also still trying to take advantage of having no pain in my hip.

Every week, my therapist asks me if I’m still feeling good.

And I say yes.

But in the back of my mind, I know that answer will someday be no.  I’m hoping that some day will be later rather than sooner.

And I’m trying to figure out how best to take advantage of the lack of pain. 

It would help if spring would get here already and give me a reason to just go outside and walk around. 

I’m also wondering if the Imuran is working.  It’s only been about a month since I started it, and as we all know, these medications can take several months before we see their full effects. 

But I know that at least I don’t feel any worse than I did before getting off the Tacrolimus/Prograf and getting on Imuran. 

I guess right now I’m in a holding pattern. 

Trying to find a job. 

Trying to finish school. 

Trying to figure out what no pain means for my life and what I will do when it comes back. 

Trying to figure out whether or not the universe has a plan, because if it does, I’m not seeing it right now. 

Right now, I’m doing okay.  I’m hanging in there.  Things could be better, but they could also always be worse.  

Wednesday, March 11, 2015

The Cortisone Shot Chronicles

Originally, I was planning to give a play-by-play by day post-cortisone shot.  But there’s really no point.

I cannot believe how life-changing one shot can be. 

If I knew this is what would happen, I would have done it 7 years ago.  You get so used to living in pain that you don’t realize what it does to you until you’re not in pain anymore.  

As I mentioned in a previous post, I received a cortisone shot for bursitis in my hip.  I have had hip pain since I first got sick, but have never treated the hip directly. 

I was super nervous about it.  My doctor was very encouraging, (and truth be told, I wanted to chicken out) but ultimately, I realized that I didn’t really want to deal with my severe hip pain anymore if there was a potential to remedy it. 

My rheum walked me through the whole thing as she did it.  First, she cleaned the area.  Then she felt around and told me to tell her the spot that hurt the most.  Then she marked it.  Then she sprayed lidocaine on the area – there is lidocaine in the injection too, to minimize pain.  Then she cleaned it again.  And then she did the injection.  The whole process probably took less than seven minutes.  It was more nerve-wracking than anything else, just the anticipation of not knowing what to expect. 

Overall, the injection wasn’t super painful, just annoying.  The pain afterward was low and dull.  That night, the pain went from low and dull to more persistent.  Certain movements hurt, and it was hard to bend directly from the hip.  It was also painful to sleep on. 

But not joint painful.  A different, achier kind of pain, sort of like when you get a flu shot. 

The night I got the shot, my boyfriend encouraged me to use an icepack or take some Aleve, but I didn’t because I really wanted to be able to gauge my pain, feel exactly where it was coming from, to see if the pain was actually from the injection or pain from my hip.

Despite this improvement, I probably won’t run any marathons – which I didn’t do pre-illness – and no offense to my friends @hurtblogger and @titaniumtriathlete – but I am moving with a spring in my step that hasn’t been there in a long time. 

It actually gets me kind of emotional thinking about it, about how one little shot can work wonders.

I no longer fear the cortisone shot, but now I fear the pain that is no longer there.

And then I wonder.  Is the minimal pain that I am sometimes feeling really there, or am I so used to the pain that it’s gone but not forgotten?  It’s like having phantom pains when the offending appendage is no longer there.

I think the minimal pain I am in now is related to muscle memory, having to relearn all these different positions that my hip hasn’t been able to get into, like folding my leg under me, sitting cross legged, or sitting on the floor and being able to get up, myself, without help.  It almost feels like I pulled a muscle or something.

But every twinge of pain makes me wonder if the cortisone shot is losing its effectiveness already.

When I got three days of steroid infusions right after I was diagnosed, I didn’t really savor the pain-free time I had.  I took for granted that eventually the pain relief would wear off.  Ultimately, I only got a month of relief from the infusions. 

And I’m not going to make that same mistake now.  I’m going to do what I can with the time I have, with the pain-free hip that I now have.

When I saw my therapist, she was like what’s up with you?  You seem different that last week.  Lighter.  And you’re smiling…Yeah…

I got a shot in the arm...in my hip...

This is me…jumping for joy…

Hip, hip, hooray! (Oh man, that was a really bad pun)