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 – – 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 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 my hip...

This is me…jumping for joy…

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

Thursday, March 5, 2015

Admitting The Inevitable: When Medications No Longer Work

During the #ChronicLife experiment, in which I live tweeted for 48 hours, I announced that my current medication regimen, the one I’ve been on the longest ever, is no longer working. 

I got a ton and love and support about it, but supporters seemed more upset about it that I am.

I think I’ve been in denial about it for so long that when I finally admitted it to myself, I had already made peace with it.

For me, if I can go a year without either plateauing, or getting liver or kidney toxicity from a medication, that’s a success in my book. 

Despite some dosing changes, I have been on my current regimen – albeit with dose changes – for around two years now. 

So it was inevitable that one day, it would stop working or I would have to go off of it. 

And I know I am far from alone in this game of cycling through medications.

Some medications are automatically off the table.  Because Humira caused my lupus to flare, anti-TNFs are out for me completely.

And how do I know that the medication is no longer working?  First of all, my fatigue is awful.  Most days I come home from work/school, eat dinner, and end up falling asleep by 9 o’clock.  My boyfriend will wake me up at 11:30 or so, tell me to brush my teeth and take my meds, and then I go back to bed.

Second, I’ve been having significant stiffness to a degree that I haven’t experienced in a long time, if ever.  I can walk down stairs okay, but I can barely walk up ten stairs without my body stiffening to the point of not being able to move. 

Of course, all of this is compounded by the cold weather, but it is not the weather alone.

Again, this was inevitable.  It was bound to happen sometime.  It wasn’t an if, but a when.

So I finally saw my rheum.  I laid everything out for her.  The fatigue, the stiffness.  The fact that my right hip and foot are in almost constant pain.  In fact, the nodule on my right foot has gotten so bad that she could clearly see it through my sock. 

And I admitted to her that I am somewhat frustrated with my quality of life at the moment.  If I do anything during the week, I come home completely exhausted and I end up going go to bed super early.  On the weekends, I can stay up later, but all I do is homework, often not getting out of my pajamas.

And my rheum agreed.  She said that my degree of fatigue really concerns her, and given that and my stiffness, believes I am flaring.

Why does that always surprise me?  Why don’t I realize on my own that I’m flaring?  I guess when I think of a flare, I think of widespread pain and not being able to get out of bed.  But it makes sense.

So I am going off of Tacrolimus and starting on Imuran.  I’m not starting it until the weekend, just to be safe, so I’ll write another post about how that goes.  My rheum said that if I have GI issues, I won’t be able to stay on it, so I hope that doesn’t happen.    

She also suggested a cortisone shot for the bursitis in my hip.  I’ve had issues with my right hip since I got sick, but it has progressively gotten worse, and I’ve never done anything to treat it directly.

I was really hesitant to do the injection.  It was one of those things I convinced myself I wouldn’t do.  I’ve heard really mixed things, with some people saying it’s nothing, and other people saying that it’s the most painful thing they’ve ever experienced.

I was pleasantly surprised.  It wasn’t too bad.  My rheum was really good about telling me what she was doing every step of the way.  I felt the needle go in, and I felt the cortisone go in, but it wasn’t particularly painful.  Now my hip feels a bit achy and weird, but nothing I can’t handle.

And that’s really what made me go through with it.  It couldn’t hurt more than the pain my hip is already in.  And it really didn’t. 

But it frustrates me that the threshold of what I will do in the name of my health is always changing. 

I said I would never self-inject, and eventually, I did.  I said I would never get a cortisone shot, and now I have.  I think in wanting to gain some measure of control over these illnesses, I create boundaries, but those boundaries become cloudier the longer I live with these illnesses.

I told my rheum that I really hope the day comes when I can walk into her office and tell her that I feel awesome and don’t know why I’m there, instead of coming in with a laundry list of problems.  She said she would like that, too. 

And we had a few laughs along the way, which I think is a good sign.  If you can laugh with the person who pokes and prods you, who touches your painful parts just to make sure they’re painful, then you’re doing pretty good.

I see my rheum again in six weeks, which is the shortest amount of time between rheum appointments that I’ve had since I first got sick.  I don’t really know whether I should be happy or sad about that.

But I do think this appointment was really good.  I feel like my rheum really listened to my concerns and really heard me.  And I think the changes are good, too.  I hope they are worth it.  And of course, I really hope that they work!      

Monday, March 2, 2015

Failure Does Not Come Easy

It’s funny – as in not – when you write a post about loss and later in that same day, you experience another loss, but of a different kind.

Failure, of any kind, has never come easy to me.  And I think I’ve become even more stubborn and pigheaded since I got sick. 

If someone tells me I can’t, it only motivates me to show them that I can.

My schedule has been very difficult for me, which I’ve talked about a lot here – balancing work, school, life, and illness. 

I know that I’ve worked my ass off in this job, and that I wanted this job more than anyone else they interviewed.  And that wasn’t enough.  There was nothing more that I could have done.

I want to work, so just let me work. 

I know that there are a lot of people out there with lupus and RA who can’t work, and I know how lucky I am that I can.    

This job, which came about after I left my internship, when my dad died, gave me a reason to get up and get out of bed in the morning.  I had somewhere to go.  In the emptiness that New York can feel like, I finally had a place where I belonged. 

A lot of people have been telling me lately that everything happens for a reason.  But ever since my dad died, I’ve been having a crisis of faith.  I felt called to this position, like this is what I was meant to do, and now I’m questioning everything.   

I’ve been bitten by the advocacy bug, it’s in my blood.  And it has felt so amazing to advocate for patients other than myself, and to take what was a profoundly negative experience in my life and turn it into something positive. 

I know something will come along; I have too many degrees for it not to.  But I was happy here.  I felt at home here.  This job was reason enough for me to force down my feelings about this city and stay. 

Clearly, it wasn’t a definite. 

In my view, it was 98% assured, and therefore, I find myself falling yet again into that ugly 2% of this never happens to anyone, but it happens to me. 

It’s frustrating to be somewhere, where you feel like you’ve found a place, and then be told that you’re not.

I’m a professional, and I’m going to work until they tell me I’m done.  The patients don’t deserve to suffer or experience my frustration at this situation.  They are the number one priority in my work, and I am going to keep it that way.   

Aside from the fact that I love my work and the people I work with, which is the number one most upsetting part of this, I now have bills to pay, and not working is going to complicate that. 

And truth be told, I know this is totally a first-world problem, but this is the first job I’ve ever lost.  In the past, I have completed that phase in my life, and it was time to move on, in a way that was very mutual, if not exclusively guided by me.  So that’s a hard pill to swallow.  I’ve been rejected from plenty of jobs I’ve applied to, but never one I was already working in. 

I know I’ll get through this, I always do.  I’ve already started looking for other jobs.  But that doesn’t mediate the hurt and the sting that I feel right now. 

As the BF said, this isn’t the worst thing that has happened in the last year, which makes it even worse.    

But, nudge, nudge, wink, wink, I am going to need a job ASAP, especially once May hits, so if anyone has any ideas or leads, please let me know.  I am not too proud to ask for help…

Tuesday, February 24, 2015

Loss On Top Of Grief On Top Of Illness

I’ve been struggling a bit emotionally lately. 

It just passed the six month mark since my dad died, and I’ve been missing him a lot.

Some days I feel very coherent about it and present, and some days it just feels completely unreal, like it never even happened.    

On top of that, I found out that one of my fellow bloggers on HealthCentral, Brad Carlson, passed away from complications of RA. 

When I received the e-mail about it, it felt like a sucker punch to the gut.  I couldn’t believe it.  Brad was just 50 years old, and was diagnosed with RA six years ago.

I’ve been living with lupus and RA for seven years now, so that really hit home for me. 

Having lost my dad when he was 62, I know what it feels like to lose someone before their time.  I have been faced with my own mortality.  But this hit me even harder.  I know people can die from RA, but I’ve never known someone, even indirectly, that has. 

And it feels weird.  I posted about it on Facebook and Twitter, and people offered their condolences. 

But who am I to take claim of this loss? 

Who am I to feel or not feel something about this?

How do you get all broken up about someone you’ve never even met before?

I never met Brad in person.  I don’t even think we ever talked on the phone.  But we communicated via email, and by sharing our struggles with RA, we knew each other in that way. 

And I realize…We do need sympathy.  As a community, we mourn this loss collectively. 

And we didn’t have to meet.  We were partners in the struggle that is living with RA. 

I know that death is a part of life, but it doesn’t make it an easy part, especially if you lack the understanding as to why it had to happen when it did. 

Lately, I feel like people expect me to be over the death of my dad.  That I should just move on.  But it’s hard to move on when someone who was so important isn’t there. 

There are so many things that I wish for.  I wish there wouldn’t have been a flood.  I wish my dad wouldn’t have gone to work that day.  I wish Brad would never have been diagnosed with RA. 

I struggle with how to make sense of these events in my own life, as I grapple with my own issues. 

It feels like too much.