Road Trip

sjeilers

I have lymphedema basically everywhere except my left leg. It started under my right arm after radiation. Moved into the arm. It then went truncal, to my back and stomach and then into my left arm. It was there for about a year. Last year I took a road trip about the same amount of time (riding not driving). We stopped every couple of hours. However, I did a lot of walking on the trip and it was a higher elevation. Oklahoma to Santa Fe. When I got home, I found it had moved into my right leg. UGH. As if everything waste up was not bad enough.

I am going to be driving a 10 hour road trip from Oklahoma to Manitou Springs, CO. I'm splitting the drive into 2 days with 5 hours each driving. I'm going to be stopping 15-20 minutes to walk for every hour that I drive. I've found that's what works best for me. If I drive 2 hours before stopping I find myself starting to swell. I also put sofa pillows under my arms while I drive so they stay stretched out and I'm just moving my hands and wrists to steer and my arms are not bent all day.

I'm taking lots of water to drink. and foods to help with inflammation to snack on. I'm also splitting my luggage into smaller bags and not one large suitcase.

Are there any other suggestions for things I should do to help prevent swelling on the trip and while I'm there?

Thanks, Stacy

ksusan

I don't have LE but I generally try to act as if I do to prevent developing it. Lots of water. I flex my fingers and pump my arms periodically if I'm driving more than 30 minutes. I also do MLD every hour or so. My preferred driving style is to drive without stopping until I need more gas, so this is a big change. I've reframed it as looking for places to pull over to appreciate my surroundings.

glennie19

Stacy, I can't think of anything to add. Seems like all the suggestions that I know, you are already doing.

paintThesky

Wow Stacy! I hope the trip went well. I have a similar 8 hour trip to do sometime this summer. Any advice would be greatly appreciated! My truncal LE is very painful after a one hour trip to our daughters house. Like you my LE spread across my trunk and into the other arm. My family physician told me that it was impossible for LE to do that. (looking for another doctor) I have had tests to rule out a new cancer and am currently looking for a new doctor and therapist. Anyhow you mentioned foods that help with inflammation. Can you shed some light on that for me? I heard Dandelion leaf and root tea was good for LE. I have had LE all along in my arm ( not bad LE) then about a year ago, it showed up under my right arm-pit, and then spread to the other arm, and breast. I had a traumatic arm surgery to my unaffected arm (the opposite side of the breast cancer) during breast cancer treatments, which I suspect was the culprit for my LE spreading. Do you wear compression on both sides?

sjeilers

I had an amazing trip. I stopped every hour and walked about 15-20 minutes. Any longer than that and my leg started to ache. I wore a loose sun dress so there wasn't any areas that were being compressed. I wore both my arm sleeves. (I do wear compression on both arms, ugh!) I was going to wear my Bioflect leggings. However, I decided that might be too much. So I wore them the day after I arrived and that helped get most of the swelling down and out of my leg. My drive was 9 1/2 hours if I drove straight through. I split the drive between 2 days with 5 hours drive time on each day. That really worked well for me. I also took back road highways. I was able to put on my cruise control and not use my legs a lot. That really helped. Also, keeping my arms propped on the pillows was a big life saver. I was able to keep them stretched out and not bent. I also wore a very loose bra. I find the tighter the bra, the more swelling I have under my arm.

Whoever says lymphedema doesn't spread has obviously not done a lot of research on it. We think mine spread to my other arm and trunk after all the reconstruction surgeries I had. It was pushed into my leg when I did too much on another vacation. I also had a hard hysterectomy and my appendix removed . Those surgeries could have also contributed to my lymph flow being changed when I overdid it on the vacation.

I had picnics on the way there and back for lunch. I also packed all my own snacks, so I wouldn't stop and pick up junk food along the way. Some of the things I took:

Celery - Organic no sugar added peanut butter - for my celery.

Beets - I brought beet juice to drink. I also use this to help control my blood pressure.

Strawberries & Blue Berries - I bagged these up in snack bags, so I could grab and have a good snack or add to my lunch or breakfast.

Bananas

Apples

Greek Yogurt

Bone Broth - I brought a couple of individual little cartons. On days I was run down and tired and heated this up and drank it as an energizer.

Small individual cans of tuna.

Non GMO Seed Crackers

Cheese Sticks

Almonds / Walnuts / Pistachios

Breakfast:

Oatmeal with blueberries / or / Greek Yogurt with Blueberries or Strawberries, or both.

Lunch:

Tuna on crackers

Cheese

Celery

Banana

Snack:

Celery with Peanut butter or an Apple with almonds

Dinner:

I would eat out, and keep everything as low sodium as possible.

I mixed and matched all these on different days. I also got large water bottles. Poured a little water out of each one and froze all of them except the first two I would drink. I then used those as my ice to keep my cooler cold. As I used one, I would refill and refreeze along the way at night. This ensured I always had plenty of cold water to drink along the way. I got a little basket to keep all my dry stuff in and set it on top of all my cold stuff in the cooler. That way it wasn't too hot in the car when I would stop along the way. It was also nice having more snack type food. It filled me up, but didn't make me feel tired from over eating at a restaurant with a lot of carbs.

I will also be the first to admit that I am a chocoholic. I only took individual squares of 72% dark chocolate and when I felt the need to be bad, I would eat one of those. If I had the whole open container I would have gone to town. This helped control that too.

This was probably far more than you wanted to know. I just found this worked really well for me. I only had one day I swelled really bad while I was out. It was a day I got to hot for too long. Otherwise, I did really great on the trip. If you have any other questions please let me know.

glennie19

Glad to hear that your trip went so well!!