On My Leash
Written on August 31, 2010 by Daniel P. Malito
Finally finding a medicine that works for me (for now) is certainly something to get excited about. Especially since I have only found a very small handful of medicines that have worked for me in the last 20 years of R.A. Unfortunately, as with everything in life, there is a trade-off, a downside to the medication itself – portability. In fact, this is true of many aspects of my illness.
For those of you who are confused right now, let me enlighten you. People like me who suffer from serious, chronic disease, are inexorably tied to the areas in which we live. This inability to move around the world freely can certainly take its toll. I am not just referring to vacationing or moving to a new location either, it can even apply to something as simple as a day trip. Why, you ask? Well, there are several reasons but the first and foremost of these reasons is medication.
Most of you already know that I take many different medications in order to help curtail the effects of my illness. Those of you who did not know, well, you just learned something about me. The problem arises in making sure that I have enough medication with me to last for however long I will be away, and some extra “just in case.” This is especially problematic when it comes to my pain medication.
Because of the many who are misusing and selling prescription pain medication, there are laws and regulations to prevent these criminals from obtaining narcotics easily. Instead, these laws tend to make life harder for us legitimate users, and let's face it – the drug dealers of the world don't get their pills from a pharmacy anyway. Because our elected officials enjoy looking like they are participating in the “War on Drugs,” the DEA has put limits on how many pills you can get in a month, how many times you can refill a narcotic script in a month, and require a new prescription from your doctor every 30 days (no refills allowed). As if that was not enough, after 15 years of taking pain medication, the dosages I receive are very high. What this means is that I cannot walk into just any pharmacy and plop down my pain medication prescription. My local CVS pharmacy has known me for years, and the entire staff knows who I am. They also have verified my pain medicine scripts with my doctors, and insisted I provide additional signed documents that my Rheumatologist had to sign. This all had to be put in place before I was able to fill my pain med prescription for the first time, years ago.
Now, imagine I decide to take a trip for a few days. Anywhere will do – California, Florida, Timbuktu, Mars – it makes no difference. No matter what, I am going to have to bring enough pain medicine with me to last the entire trip, plus I always bring an extra three days worth in case anything happens. I could miss my flight, I could hurt myself, or I could be in extra pain – and those are just the reasons I can think of. The reasons I can't think of are even more numerous. Let me give you an example. I was in Los Angeles (I live in New York), and I suddenly realized that I did not bring enough pain medication. After I stopped freaking out, I called my doctor in New York and asked him to phone in an emergency 5-day supply of medication to the CVS next to the hotel. When I went to pick up the pills, I found out the hard way that every state has their own laws pertaining to narcotic medication. I was told that California does not allow doctors to call in prescriptions of class 2 narcotics. This meant that all I was able to walk out with was my lesser, basically ineffective, pain medication. At that point, I was so discouraged that I told myself I was never going away again.
There was another time while traveling that my pain medication was not just a thorn in my side, but downright dangerous. As I was traveling through Europe, I arrived in Venice, Italy. At that time, the Venice airport, or should I say boat-port, did not have metal detectors as such. In fact, all they had was a man with a sub-machine gun and a big, scary, tooth-filled, dog. The dog simply sniffed your bag, and if Cujo started barking, you were pulled aside and your suitcase was searched. Well, of course, I failed the bark test, and they found my medication. At the time, I was carrying all my pills in one jar in order to save space in my backpack. This was a mistake, especially when traveling abroad. Take my advice – make sure to carry any of your prescription bottles with you, and make sure your name is on them. This goes double if you have narcotics with you. It got straightened out, of course, but it was just another reason that medication made traveling difficult.
I could go on at length about all the troubles my narcotic pain medication has caused me when it comes to traveling, but I am sure you get the idea. Another one of my medications, though, is the biggest obstacle when it comes to travel – even a simple overnight trip. I am taking a relatively new medication called Kineret, and the dosage is one injection per day. The syringes come individually pre-filled, and they must be refrigerated. This means that I have to carry one syringe for every day I will be away. Oh, and, I have to find a way to refrigerate them. The refrigeration part immediately rules out activities such as camping or hiking (not that those are things I like to do anyway), but any place that does not have a readily accessible refrigerator is off limits.
There is also the security risk potential that carrying syringes can expose you to. I found out the hard way when I tried to board an airplane with syringes in my carry-on bag. I couldn't put them in the checked luggage, of course, because they need to be kept in a bag with ice, and they can break as well. So, I had to keep them in my backpack. Ever since September 11, traveling with syringes in your bag that are loaded with an indistinct clear liquid, is something the Transportation Security Administration tends to frown upon. Even with a copy of my prescription in-hand, it is still a huge hassle.
As you can see, traveling is not the easy, pick-up-and-go, activity that it is for many of you reading this. Besides arranging for the transport and safety of my medication, there is always the fear that something drastic will happen while I am out of reach of my family, friends, and doctors – my support structure. Moving away for good is not even worth considering. Even moving out and living alone, where I will be out of reach of help if needed, is off the table. Traveling is just another aspect of living with chronic illness that people like me must adapt to. Most times when I am asked to travel with friends or family, the reasons above make me decline the invitation. This leash, as I call it, varies in length based on my health, but it will always be there. I just have to make sure to never let it get short enough to choke me.