Flying tomorrow and swelling

Anonymous

After these weather fronts came through, my body got all out of whack. I have even been having light sensations of arm involvement, which I haven't had since before my deconstruction surgery. I have never been diagnosed with arm LE or really treated for it. When my regular LE therapist was out on maternity leave before my surgery, I saw a different therapist and expressed my concern about my arm and wanted to be in tip top shape going into surgery. Unfortunately, she was too aggressive with my arm and I didn't really get any benefit from the experience. She even aggravated my truncal LE. Anyway, I still don't have my Solaris night vest, and I am using my inserts in my tanks, but they just aren't quite doing it. Anyway, I am supposed to fly from PA to FL tomorrow and I am worried that this will really make things worse. Today I had a myofascial treatment since I was also feeling tight and restricted. This was the second time I had my chest worked on once since my deconstruction, and, boy did I really need it! I noticed the swelling went down quite a bit, but then after running around doing last minute things for travel, tonight it feels full again. Should I postpone my travel for a day or two if/since I can? Or should I just do the normal proactive things, ie lots of water, sleeve and glove, fist pumping during flight . . anything else? What should I do? I definitely need to go within the next few days, but is it worth it to hold off if I can? I have used up all of my PT/LE coverage for the year. Can I just say that I am feeling panicky and stressed? My myofascial guy happened to ask me today when my diagnosis anniversary was - I stammered that it is a week away. I can't believe he remembered that! Full circle I have come after four years, diagnosis, surgery, reconstruction, LE diagnosis, deconstruction surgery, and now back at square one. I was feeling emotionally good, exercising carefully (I don't think this is cause of flare), feeling good about how I look in my clothes, and finally getting back on the mojo wagon with DH. Why can't I just reach some sane mental state and stay there? Sorry for the long combination of questions/rant.

kcshreve

Have you used any UnderArmour compression shirts?  They are lighter compression than sleeves, but may give you at least a little support during flight. What would you gain by postponing your trip a few days - would your Solaris come in by then? Definitely keep up with what you are able to do.  Flying aggravates my LE and I have to spend more time and pay better attention to the fist pumps, deep breaths, MLD, etc.  Hoping you can find a good solution, you have been through a lot.

kira66715

Tina, I'm with KC--do you gain anything by postponing the trip? I think the underarmour is a good idea and can be used with a sleeve/glove as well.

Flying aggravates me as well, and Ironically I flew twice in 2 days for the LE board meeting, and even got swelling iin my ankles--too much flying, sitting around and hotel food. 

You have been through so much, I think it's only normal to get royally ticked off when you flare for no reason. I also think, and find for myself, that little PTSD flashbacks happen to me--just yesterday the radiation therapists at work were reflecting on the place where I was treated, and I got all caught up in how mean the radiation therapists were to me during treatment there. It was like it was yesterday! And it was over 3 years ago.

Symptoms are less tolerable the longer they hang around. At this point in time, LE symptoms just plain stink.

I vote for compressing as much as you can, hydrating, fist pumping, and maybe walking around in a pool once you get to Florida.

And, realizing that this stuff is amazingly frustrated, and you've been on a long hard journey. And it's great that you're feeling better in so many ways, but it makes a flare that much more sucky.

Kira

Anonymous

Somewhat more sane woman checking in! Man, I really get freaked about flares and definitely think there's a physiological connection to the emotional reaction. There's a cognitive factor, and even with the best appropriate self talk when it comes to dealing with a flare, I get all weepy like PMS and feel just miserable. I worry about flying as well, so I anticipate it being stressful. To top things off, almost every time I have flown in recent years, it involves going to care for my aging mother and things related to that. I used to love and look forward to coming to Fla, but now it feels like drudgery and a place where my LE misbehaves. If I had to recap what I put my husband through for this trip, I would crawl under a table in embarrassment! Now that I am here, I feel a little better, and my LE seems to have remained stable so far. Thank you, ladies for the reassurance. Kira, I do think I have PTSD, as I can be a "normal" functioning person, and then just lose it with this kind of stuff. And while I love my mother, she is no picnic, and part of me wants out of this caregiving role. Too much to deal with sometimes.