Speaking Of Spoons…

I have been looking for spoon jewelry for a while and finally found some that I like on Etsy from The Paper Poppy Store. 

Last week, I wore the necklace and earrings to work and one of my coworkers asked what my necklace was.  I told her that it was a spoon, that I have lupus and RA, and sort of tried to summarize The Spoon Theory and the idea of spoons as they relate to chronic illness. 

I decided to email her and my two other main coworkers, including my supervisor.  I told them that I was diagnosed with Lupus and RA in 2008 and that I try to educate people wherever I can.  My supervisor already knew about my illnesses, but my other two coworkers did not. 

My email read:

Today when X stopped by the office, she asked me what was on my necklace.  It was a spoon.  My earrings today have spoons on them, too.  I told X that it's in reference to The Spoon Theory, written by a woman with lupus to try to get her friend to understand what it feels like to have lupus.  You might not know, but I've had lupus and rheumatoid arthritis since 2008.  I really try to educate people as much as I can, and since I am working so closely with you all, I figured I would share The Spoon Theory with you:

http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/  

One of my coworkers emailed me back to say that reading The Spoon Theory made her cry and that she is so grateful to me that I use my “precious” spoons to help others.  I was so touched by her response.

Maybe part of it is the fact that we work in patient advocacy, that there is some measure of understanding.  But I don't think I have ever been in a situation where I felt so good, not only about disclosing, but also about the subsequent response that I received. 

Since I am working so closely with these people, I feel that it is important for them to understand my situation, although I hope that they will never have to see me at my worst; but if they do, I hope they are at least a little bit prepared.

I find that trying to educate people can be exhausting, but in this case, I felt like I had the perfect opening and opportunity to broach the subject. 

And that openness and honesty was returned to me in the responses that I received from them. 

I’ve also realized that it’s really important to meet people where they are.  In this case, I met them at a very basic level.  A comment about my spoon jewelry led to a very meaningful conversation about the nature of lupus and RA, and some of the issues that result from them. 

I didn’t attempt a technical conversation about the major medical complications of lupus and RA, or the treatments used to treat these illnesses.  I tried to give them a basic idea of what it feels like to be me. 

The truth is, you never truly know what is going on in another person’s life unless you ask them or talk to them and learn about them.  I’m sure that when my coworker inquired about my necklace, she didn’t anticipate the depth of the response that she received from me. 

But I’m really glad that she asked, because it opened up a line of communication that may have stayed closed. 

The Spoon Theory has spoken to me since I first got sick, and I like being able to share something so valuable with others.  And more recently, I’ve started talking about spoons a lot, because they truly do make sense to me.   

And I love my spoon jewelry.  The necklace and earrings are a constant reminder to me of what I’ve been through, and my daily battle for spoons.

Traveling With Humira (I'm Back!!!)

First off, I want to apologize for my absence.  I have been traveling almost continuously for the past two weeks, and my computer has been in the shop.  I am finally back and also have my computer back, so I am just starting to play catch-up.

I had hoped to have this post up earlier, but decided that I should wait to post it until I was back and survived getting through airport security.    

I flew to New York with my boyfriend, and then we drove to Martha’s Vineyard, to spend some time with his family.  Then I traveled to Los Angeles to be a bridesmaid in one of my really good friends’ weddings. 

Before my Humira schedule had to be changed, I had lucked out that I wouldn’t need my injection while on either trip I took.  However, when it changed, it meant that I would have to travel with my pre-filled syringe to do my injection while I was out of town.

This is the first time I have traveled with anything injectable.  I usually have my meds (in pill form) with me, and I haven’t had problems getting my pills through security.  But at over $900 a dose, I couldn’t afford to take the chance of security not allowing me to take my Humira through. 

And it’s not just about the money.  A missed dose could significantly affect my health.

While some of the information for the TSA online is clear, I wanted to actually talk to someone, ask questions, and get verbal confirmation that I would be able to get through security with the medical supplies I needed. 

So I called TSA Cares, which is a hotline that has been set up by the TSA specifically to provide information for people with disabilities and medical conditions.

I called a week in advance, just to make sure that if I needed to get something specific that I didn’t have, that I would have time to get it.

The phone call was relatively short. 

My main concern was being able to have an ice pack, as Humira has to be kept cold.  And I wanted to make sure that I wouldn’t have problems getting the used syringe back through security on the way home, so I was told (and did) travel with a small sharps container.

My Humira starter kit came with a pouch with an ice pack, specifically for travel. 

For some reason, I have terrible luck with security.  So I wanted to make sure that I wasn’t going to have a problem getting my Humira through.

They told me that all medical stuff needed to be put in its own container at security, and that I needed to declare that, that container contained “medically necessary items.”

To be perfectly honest, even though I was told that I shouldn’t have a problem at security, I was really worried. 

Ironically, it was the smoothest TSA security experience I have had.  In Detroit, I noticed that there was a separate line for families and medical, so I got on that line.  When I got up to the agent, I told her that I had medically necessary items with me.  She told me that if I felt comfortable, I could take them out and declare them; otherwise I could ask for a bag check. 

Her reference/cognizance to my comfort really surprised me. 

Coming back from New York, I didn’t see a special line, so I just got in the regular one.  They did take the bin with my medical stuff away, but quickly brought it back, saying everything was fine.

I don’t know if calling ahead helped. 

Honestly, I was prepared for the fight of my life.  Because in the past, I’ve had less than ideal experiences. 

And the reality is, these people don’t care.  They probably have an associate’s degree, and it’s clear that the number one job qualification you need to work for the TSA is being an asshole.  I guess it comes with the territory.  But there is nothing that frustrates me more than innocent people being treated like criminals, and subjecting them to treatment that seems clearly in violation of civil rights. 

That was the horrific experience of Duncan Cross, in his recent post, TSAssaulted.  I love his post for the honesty, but his experience makes me so, so angry.  I have felt, ever since security became so tight, that they are more likely to disturb people that aren’t dangerous than they are the dangerous ones. 

The reality, though, is that this is real life.  You can’t dictate your medication schedule by your travel schedule.  You can’t not take your medication or leave behind any type of medical device that you need.  Regardless of your condition, this is a fact for those of us with chronic illnesses and/or disabilities.

Just because security is tight doesn’t mean you can leave your real life behind.  And living a life of chronic illness or disability is hard enough, without having to worry about TSA thugs.  I’m sorry, but that’s what they are.  You give people a little bit of power and they run with it.  But there’s one thing in this life I will fight for, aside from the people that I love, and that’s my health.  I feel like a lot of times our health winds up in the hands of idiots.  And that can be pretty scary. 

Don’t these people realize that our lives are difficult enough without them harassing us, without us having to explain everything?  And you can’t really get upset, because they might detain you, or at least show concern about how you’re acting.

To be honest, I was really worried.  I didn’t know if I would be able to keep my cool if they gave me a hard time.  I knew that having my boyfriend there as a buffer would be a good thing.  And I warned him that, under the best of circumstances, I’m not the best plane traveler.

The other thing I debated was to take one or both syringes.  Since this was the first in the monthly cycle, I had both of them.  I had nightmares that the cabin pressure would cause the syringe to explode.   

We flew to New York and then drove to Martha’s Vineyard.  I had planned to leave the Humira in New York and do the dose a day late when we got back, so that the Humira would only have to be out of the fridge once.  But in the end, I opted to take it with us to Martha’s Vineyard, and did my injection on my birthday no less. 

These were not ideal circumstances, and any number of things could have gone wrong. But again, we can’t suspend our illnesses just because they make life less convenient. 

And like I said, this was the most anticlimactic security experience I’ve had.  If calling ahead did help, because I can’t figure out anything else that would have, I strongly suggest you call ahead, too.    

I was ready to surrender my soul, but in the end, all I had to do was declare my items as medically necessary.    

If you have questions or concerns, you can call TSA Cares at 1-855-787-2227.

Better to be safe than sorry (pun intended). 

Don’t get me wrong, I don’t feel all warm and fuzzy toward the TSA, despite my good experience.  I feel better, a bit more confident as a traveler.  But I’m left wondering: They care?  They really, really care?

If going through the hotline really makes it easier for those of us with chronic illnesses and disabilities, I’m all for it.    

I had intended to get this post in for the travel themed edition of PFAM, which was hosted by Duncan Cross, but I didn’t make it on time.  So check out other travel experiences of people with chronic illnesses. 

Illness Doesn't Rhyme With Romance

Another failed romance just in time for Valentine’s Day…

If you’re a reader of this blog, you know that one thing I really struggle with is relationships with men.  I really didn’t start dating until after I got sick, which I think has caused the two things to become inseparable for me.  It’s like I can’t look at one without examining the other.

For me, graduate school has been overwrought by my health issues.  Plain and simple.  How could I fully enjoy grad school when my entire time here has involved re-inventing my life?  It has been a constant struggle, but I’ve managed to stay afloat.

I can’t really say that as far as romantic relationships are concerned. 

I met a guy at a friend’s party.  We met within the first five minutes and literally spent the rest of the night talking.  I’ve never had such an instant connection with someone before.  And it was really nice to meet someone in-person first and not online.  And we began what would turn out to be a very short-lived relationship.  He was the first graduate student I’ve ever dated, which I guess is kind of weird.  It was nice to feel like we were in the same place in our lives. 

And I had a moment with this guy.  A moment of absolute truth.  I’ve never felt so vulnerable in my whole life.  And I’ve never voiced these feelings out loud to anyone before.  It was me, completely laid bare, laying it on the line, and having to be okay with the results of my brutal honesty.  “I’m so pissed off right now.  This fucking sucks.  Why can’t one thing just be normal?  Am I really worth all of this effort?”

I said it, and didn’t want to eat my words.  I said it, he listened.  And comforted.  And that’s not why things ended. 

Getting hurt hurts.  It’s not fun to realize that you just entered that conversation.  That things are ending.

A loss is a loss.  You’re brought into someone else’s world, if only for a brief moment, and then that’s it.  And what do you do with the thoughts and feelings that occurred during that time?

Since my ex-boyfriend dumped me a year ago, for me, dating has been a series of missteps after missteps.  What if I’m alone forever?  What if my ex-boyfriend was the best, closest thing to love that I am ever going to get? 

I realized something recently.  At one point, I would be intimate with someone only after they knew about my illnesses.  Maybe I feel this way because I’ve shared something so deep about myself, that it’s okay to bare it all.  But what happens, then, when you want a relationship to move forward, but you don’t feel like disclosing?

That’s not really the issue here because I got a call from my doctor when I was with him.  He could tell that I was distressed by the phone call, which was to tell me about abnormal labs.  So the circumstances required that I be honest with him. 

Again, I’m reminded that just because a guy is okay with the illness baggage, for one, it doesn’t mean he’s the one, and two, the relationship has to last long enough that that treatment turns into behavior and action. 

I think a lot of people look at me and see someone who is fiercely independent, that doesn’t need a man.  And the truth is, I guess I don’t need one.  But I want one. 

But the reality is, I cannot be spontaneous in the way that other 20-somethings can.  I have meds to take and things that I have to think about that take precedence over movies and dinner dates and sex.  I talk more about this in my HealthCentral post this month, on Sex and RA. 

All that said, I celebrated the single girl’s Valentine’s Day, complete with chocolate, strawberries, and the usual side of meds. 

But I am more than this moment.  And I am more than these illnesses.  And someday, I will meet someone who sees me and loves me for me.

(As for the most recent labs, my rheum thinks that it’s because of when I had the labs drawn and when I had taken Methotrexate.  I honestly don’t believe that theory because of how high the liver enzymes were, but if he thinks I’m fine to stay on MTX for now, I’m not going to argue, because it’s working.)

Forgive Me Rheumy, For I Have Sinned

Ah, there’s nothing like full disclosure on Monday morning…

Over the past couple months, I haven’t been a model patient.

I would say about four to six times in the last month, I haven’t been able to sleep.  I just roll around.  My brain won’t shut off.  And I can’t figure out what’s messing up my sleep cycle.  Then when I wake up, I notice that I forgot to take my nighttime meds.  And then my lack of sleep makes total sense, although I am sad to discover that I am obviously still in need of meds to help me sleep.

I don’t take sleeping pills.  I take a muscle relaxer and anti-anxiety meds.  It took me and my rheum awhile to figure out this combination.  When I first got sick, I realized I wasn’t sleeping well because 1) when I would lay in bed, it felt like my bones were crushing in on each other and 2) for an amount of time, when I was at my sickest, I worried that if I went to sleep, I wouldn’t wake up (maybe a very irrational, but very real fear).   

I’ve always viewed it as okay to occasionally skip or forget to take my nighttime meds.  Not on purpose, but I really thought I didn’t have to worry that the world would cave in if I missed a dose.  Now I’m realizing, however, that they serve a very real purpose in my life.  I can’t sleep for shit without them.

I’ve also been a delinquent patient in another way.  I haven’t totally followed through on the “no drinking alcohol” rule.  I’m not really sure how serious of an offense this actually is.  I’m not a big drinker, but for some reason, when you’re not supposed to, it suddenly makes doing it so much more palatable.  But I realize now that because 1) I don’t drink that often and my tolerance is low and 2) I think the meds make the effects of alcohol more potent, when I do drink, it hits me in ways that makes me never want to drink again.  Don’t worry.  I won’t make that mistake again any time soon. 

Also as of late, my fatigue has begun to increase.  I have a feeling that it getting darker earlier has something to do with it.  And therefore, I’ve increased my coffee intake from one cup a day, which I’ve been relatively staunch about in the past, to no less than two cups a day.  But the thing is, and we all know this, caffeine doesn’t do much to cure this kind of fatigue.  

So what gives?  Why have I become a dose-skipping, alcohol-drinking, coffee-addict? 

Needless to say, when you’re feeling reasonably well, it’s easy to push the envelope a bit.  But it’s stupid.  Because as soon as I get welcomed back into pain land, I realize how good I had it when I wasn’t in pain.  My workouts this past week have been horrible.  My knees burn the entire time.  And you how you can grab a cat by the nape of its neck?  It feels like someone is doing that to my shoulder.  It’s not pleasant.

All in all, though, I have an appointment with my rheum in a week and a half, and honestly, I feel like I don’t have all that much to say.  My right hip and elbow are a constant struggle, but that’s pretty much a given in this body of mine. 

And I don’t plan on telling him about my few transgressions.  I wouldn’t want him to think that I’m trying to sabotage this period of relative health.  Because I’m not.  And there are certainly signs that I’m in active disease mode.  My left neck gland is swollen.  Does it ever get un-swollen, I wonder?  Well, I know it does, because now that it’s swollen, it hurts.  And I’ve developed a gash on my lip that just won’t heal.  I don’t know how I got it; seems like my lip has a mind of its own.  It looks like my non-existent boyfriend punched me in the lip.  Yeah, it’s that good.

So let’s be realistic.  We aren’t model patients 100% of the time.  I think we tend to be better patients when we are feeling worse.         

Ultimately, it’s my responsibility to get back on track, and I’m writing this post to hold myself accountable to do just that.