Traveling with RA Part2

A wonderful reader emailed me about a followup to my “traveling with RA” and asked some key questions.

Dear Sasha, … I have a wheel chair of my own…I read on American Airlines website you can check it free of charge.  …Checking my own worries me. Also, I did not realize they could provide you with a chair.   Do I need to call the airlines ahead of time if I just want to use one of theirs? And do they let you use it until you actually board the plane? Oh, and thanks for the tip on the Enbrel Traveling case. I didn’t know about it either! I ordered one today, along with a travel sized Sharps container. I had no idea how I would manage that.  Will they search my bags for my medication? …I am probably worrying myself unnecessarily!  Thanks for your blog, it really does help. And I hope everything is going ok for you!

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MY RESPONSE:
• See Traveling with RA Part 1 for the full scoop and info on trolleys and much much more!
• Would you like to add to this travel list?  Simply send a comment and we’ll add it to our list.
• I’m a frequent flier not an expert so please do your own research.  Thanks!

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• Be patient with security
• Don’t be nervous – nervous causes anxiety which then turns into a short fuse, frustration, and forgetfulness. All these are a bad idea for traveling.
• Medical Cards: I use the one from medtronics for my pump (CP) and also for Enbrel (RA).  They tell you that you don’t “need it” , but I’ve found that if I carry it out the whole time I go through security that I have an easier time of it.
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• Read the airlines website for EACH airline you’ll be traveling on.  Be sure your medical containers are approved for travel.
• Please do call the airlines to arrange for their wheelchair.  They can arrange it for you when you arrive, but then it is not 100% certain. Best to prepare properly.
• Yes, they take you to the plane – not just the gate.
• I’ve even had them help me seat by seat to get me on the plane from a wheelchair.
• I prefer to go by wheelchair when I’m exhausted even if I was okay on the trip without my cane even.
• Even without a wheelchair I have had an easy time of it since I am patient and don’t rush TSA or anyone.
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• Don’t worry if they search you – it is part of the process. Let TSA do their job. I smile at them and say polite nice things.
• In other words, don’t stress out –  if you have the proper ID cards for Enbrel or your pump you will be fine  (Plus, Enbrel comes with the travel case or can be ordered).
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• Also, I pay the skycap guy $20 to take care of everything for me including getting the wheelchair.  I like this and it works well for me.  If you don’t tip them that big then they might have to send you to the inside counter and it isn’t worth it. They will carry everything and be very helpful.
• You can usually bring a little bit bigger water for medical reasons if you’ve got a medical card.
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• Resources: TSA (Security) Info about traveling with Special Needs/Medical Conditions
• TSA Wait Time Calculator
• Great general advice from TSA to get through security faster.
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Thanks! Sasha xoxo

Me and My Pump

It was a yearlong process to get the intrathecal pump. I didn’t care that it would protrude from my left belly. In fact, the doc says I didn’t want it. I don’t remember. I was in so much pain I wanted to kill myself. I wanted to put Jax, my family, and my friends out of constant fear and worry. The pain was making me someone I’m not.

I tried different treatments including Botox injections to the pancreas. It worked a bit to freeze the area but the pain was still unbearable. I wondered how long I would live all the time. I got B-12 shots, continued with alternative medicine paths such as biofeedback and some quantum machine where I felt I was being put in an electric chair. The stress of getting to the appointments and leaving work was a hole other ball of wax.

Then we tried a neuro-spinal stimulator. This was absurd. The pain was overshadowed by my newly electrified legs. I went through a horrific series of hospital surgeries to get the trial put in. One of the docs even swore he’d turned the unit off when in fact he’d put the unit to the top level of it’s electric capacities. YIKES!! I screamed, squealed, and agonized through the torture of it. I felt I was no longer human. I felt subhuman.

Maybe it was that I knew I’d lose a few days of work so I’d literally work right up until the morning surgery. That meant going into surgery without sleep. I don’t recommend it, yet I did it before at least four surgeries (procedures).

The spinal stimulator was a no-go. I hated it. Eventually it was decided I would wait for the pump. I went down to having 4 days asleep per week. I was getting worse. I was so afraid of dying. At the same time I was still effectively running my office and going to client’s jobsites. This was insane.

[Post note: What I didn’t yet understand at the time is how RA fit into all of this. I didn’t know why I couldn’t feel better. Looking back I believe a lot of this awfulness was actually due to RA].

xoxo,
Sasha

PS: You’re currently viewing the first part of a series on my pump.  For more information about the pump and my own experience you can visit ME and MY PUMP II , PAIN PUMP PLEASE which is a letter from a reader and more info about the steps I took to get my pump. Also: RESOURCE GUIDE 2009-Home Page, and TIPS FOR YOU (which has many links at the top of the page).