my left foot is swollen today. my brain feels swollen with a rough headache. i just got home from my long work trip. I’m just exhausted. it has been an amazing experience but nowhere close to being over. I could tell you loads about the trip and the journey, missing my Jax, my house, my own dust and grime - rather than the hotels…but instead I’ve decided to tell you that the medical companies try to put so much fear into people about traveling with Enbrel - but don’t believe the hype. As a small side note to be regular readers - I believe I have lost a ton of weight on my trip, but I am too afraid to weigh myself. Has that ever happened to you? It’s been 8 months off of steroids - but it still affects my body in a negative way. I hate that prednisone and I will never believe a doctor again who says there is no alternative. It just is not simply true in my non-medical opinion. There’s always another path… Steroids are just so easy to tell a patient to take… we all want instant results from our pain and that is what it offers… but it is not worth it!!!
Now, on the the flying routine: I fly so frequently that soon I will have a chair named after me. My trips are long so it requires me to bring a large stash of meds, enbrel, used needle carrier and to prepare months in advance with Dr appointments, intrathecal pump refills, plus stuff packed away for any type of emergency.
On this trip I tried to order Enbrel this way: 1box for the hotel and 1 box for my house. They told me that the insurance had to be filed as an “away” stay and that I would need to call them and on and on… BUT my life is far too complex to waste time dealing with BS. So I was frightened but I ordered all the Enbrel for my hotel. I always stay at a hotel with a fridge in the room. For me it is mandatory due to meds, food diet, and general level of well being.
The “specialty” (pain in the ass) phone pharmacy told me that they were worried about me traveling with the needles on the flight. I have now done it at least 6 times and I am no longer worried at all. You have to be prepared to be fully searched - which I fully expect every time. If you go into the airport thinking you should glide through then you are going to have a BAD DAY. I don’t even mind security. I make jokes to myself about the delightfully lesbian guards. They each have their own style of hand-searching me. (I refuse to go through the metal detector with my pump - REFUSE… they would have to drag me through it themselves after searching my anal region to get me to do it - there’s morphine in my pump and I refuse to mess around with those kinds of electronics. So traveling with a pump is easy for me as long as you have your medical card.
But for RA I’ve found that as long as you look secure in your plan then you’ll be totally fine. I put my enbrel in my travel pack with the 3 ice packs they provided. I have the Enbrel card in that travel kit that I have had to show to lower level TSA. But higher level TSA don’t even blink and wave you by. They’ve seen it all before. Also: did you know that you CAN bring water on if you cite medical reasons? it only works with a medical card like the one in the Enbrel case or my Pump card - laminate it first - it makes it seem more official.
Before i had my pump for CP I was facing the need to fly with an IV tower for a full year. I was going to have a stomach tube put in for a whole year! What a major non-workable scenario. Luckily my Shrink told my medical doctor not to do it- she was terrified I would kill myself as a result because she wrote “this patient loves working and the need for the IV tower would remove that ability. I urge you not to perform the J-Tube procedure”.
Back to traveling… When my RA is bad I always ask for a wheelchair at skycap. I don’t mess around - this way I won’t miss my flight. Also, it is handy to give skycap $20 right away - they are happy and will take care of you in front of anyone if you need. They completely take care of the luggage no questions asked.
Take my advice. Make your life easy use these steps for airport ease:
(Also read more blog updates about my life with RA and pancreatitis on this site)
RA=Rheumatoid Arthritis CP= Chronic Pancreatitis
RA - Get Enbrel Travel kit from pharmacy or pharmaceutical
RA - put your enbrel on ice in the cooler pack
RA- Only take as much enbrel as needed for trip + 1 extra in case of delays
RA-Keep Enbrel in smaller box-it protects it best
RA - defrost ice pack fully 2 days before return trip (if none left)
RA - Laminate all medical cards
Always travel with health insurance card
Check your out-of state coverage. Some companies like mine hate to pay you back for outta state ER visits.
CP/Possibly RA: Don’t bother with metal detector. It is your right for a hand search. You get treated better, often faster, and easier if you are a slow poke like me.
Be mentally prepared to spend time in security. You have special needs - get over it. Let them do their job and mellow out.
RA - if it is a bad RA day simply ask for a wheelchair or bring your cane and ask for help. No reason to miss your flight because you are limping so badly like me
Commit to the Cart - Once I started walking and got bored of waiting for the cart. HUGE mistake - they refused to pick me up later and said “you can walk” even though I was limping like a dead horse… don’t refuse the cart wait if you need it - you can only guarantee it at the gate and entrance at certain airports IF you ordered it ahead of time.
SKYCAP/ $20 = joy. Forget the painful wait and agony. Just pull out the 20 and get over your complaining. Your pain will be so happy you did.
Long flights are an entirely different story. You MUST walk around the plane many times so that your legs and feet are not giant balloons. This takes effort and an aisle seat
Say “No” to IV towersI know there are more but I am still exhausted from my trip so I’m going to go back to work.