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.  

Wednesday, February 18, 2015

Dear IKEA, Get It Together!

Moving, under the best of circumstances, is a spoon suck.  It’s even more of a spoon suck when things don’t go as planned.

After ordering over $1,200 worth of furniture from IKEA, we ended up realizing that we needed a new bed. 

Neither my boyfriend nor I drive or have licenses, so my boyfriend and his friend rented a truck to move the rest of our stuff, and stopped at IKEA to buy a bed.

Upon opening the bed to put it together, we discovered that a piece was broken.  We immediately called IKEA and they said they would FedEx a replacement part.  Keep in mind, they had a picture that we emailed them of the part and the damage. 

A week later, we received the completely wrong part.  The part we needed was wood and they sent us a metal piece.

Again, we contacted them immediately.  They said our case would be put on high priority.  A week and a half later, we received the correct part, but with even worse damage than the original piece.

We have contacted them via phone and email at least 10 times at this point. 

This has been going on for over a month.  I had hoped that they would rectify this situation on their own. 

I didn’t want to play the illness card, but I’m finally at that point.  We have been sleeping on a mattress on the floor for over a month now.  I have lupus and RA.  That’s not great for my joints.

Not to mention that the stress of this situation hasn’t helped health matters either.   

And IKEA just can’t get it together.  I have already told my credit card company that I will not pay the $1,200+ bill until this situation is resolved.  And I’ve filed a complaint with the Better Business Bureau.

I don’t mess around – and we need a bed! 

In the past, I have had nothing but good experiences with IKEA.  My apartment in Michigan was almost entirely furnished with IKEA products.

But this situation is different.  I shop A LOT.  And this is by far the worst customer service I have ever experienced. 

I really, really did not want to play the illness card.  But nothing else is working.  And it’s the truth.  This isn’t a healthy situation right now.  And IKEA needs to fix it.

They are not acting in good faith, and they are not standing by their product or their company name. 

Come on, IKEA!  Get it together! 

Monday, February 16, 2015

#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: #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.