Wednesday, August 22, 2012

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.