Loving Life Camping with Lymphedema

I don't mean this to be one of those food blog post where it starts out "...it was an usually warm fall day when I was born . . . "  Most of the time I'll scroll until I get to the recipe.  So here is your permission to scroll if you don't want the background story of my current health issues.

Recently my body has been what I call rejecting itself.  It feels like I'll have a season, when the saying "when it rains, it pours" describes my life and how my body functions.  It is difficult for me to slow down and listen to my body sometimes, but I feel like I've gotten better at listening to it's cues of when I need to stop and rest.  Well lately my body is screaming at me and my stubborn, strong willed self has had a tough time listening.  I told my husband my spirit character is John Lock from LOST (see below meme.)

I started to have back issues after my daughter was born about 7 years ago.  It would spasm so much if I moved an inch the pain would take my breath away.  I had to be in bed for weeks letting it heal.  I remember my husband bringing my daughter in to me to nurse, snuggle and that was it-until my body healed and I could move.  It sounds dramatic, but if you've had back issues you know what I mean.  Every few months my back would go out and I would have to lay low until it healed.  Thankfully I have an amazing chiropractor, who also uses massage and physical therapy techniques.  He is basically the reason I am still able to walk and go about my days.  He has healed my body with touch, when other doctors would tell me to get surgery.  Ok, sorry I know this is a camping post, but I had to give you a little background of where I am coming from.

The past few weeks, I've experienced weird symptoms, have seen some doctors and had one ER visit. I still don't have complete answers, but do have an understanding of what might be part of the issue. From an MRI I found out I have bulging disk on both sides of my neck, stenosis and arthritis.  This has caused migraines, pain and weakness in my arm and hand, along with numbness at times.  Add on a horrible Erysipelas infection in Bertha to boot . . . at this point I have to choose to laugh or cry-I chose both this time.  Basically my body is yelling at me to stop, rest and heal.  I knew we had our two camping trips coming up that my kids were living for and I didn't want my broken body be the thing to let them down.  So I stopped.  I let my sweet dear husband do everything for our trips.  I sat as he and our amazing friends helped him set up our camp site and tear it down.  I sat on the shore as others took kayaks and paddle boards out.  But, I knew that was the only way I was going to be able to make the trips and have the moments by the campfire with my kids, watching them laugh, swim, catch frogs and eat s'mores the size of their faces.  Why is it that the hardest thing to do is nothing?  I had to push the guilt away, swallow my pride as others took care of things that would normally be my job.  The shame and guilt I was feeling were all me.  My wonderful husband serves me with a smile and gentle kiss on the forehead and my friends that are basically family were more than happy to lend a helping hand.  I knew I needed to focus on healing and staying healthy.  So on to the camping post!

My first question is, "how many compression stockings to you own?"  This past time I ordered my custom compression I ordered 4 stockings.  I also have saved older ones that are still in ok shape as back ups.  I know it's not ideal, but it's better than no compression, because I packed 2 stocking per day.

My Lymphedema Packing List Included:

• 7 compression stockings
• Velcro compression wraps
• Garden gloves (I buy mine at the dollar store and they work great!)
• After sun lotion
• Baby Wipes 
• An extra towel or paper towels
• Bug spray
• Sunscreen
• Antibiotic (if you have a history of Cellulitis or Erysipelas infections)
• Night time garment
• Zero Gravity chair
• Closed toe shoes (I brought old sneakers and old Ugg boots.)

My main concerns were:

1. Keeping Bertha clean.
2. Always having some compression on.
3. Elevating as much as I could.
4. Staying healthy.

So here is kind of my camping routine.  I wear my Velcro compression wraps while driving to our campsite.  Sigvaris sent me some to try and they have been a game changer for helping manage my Lymphedema.  These are the Compreflex Wraps I use: Foot Wrap & Calf Wrap.  It helps to have the extra compression, however since camping is dirty business I don't wear them while I'm there to preserve the life of the wraps.  Usually after breakfast we'll go to the lake for the day, I make sure to sunscreen my leg before I put my compression stocking on.  Your skin can still burn even while wearing compression.  Water movement it great for Lymphedema, but since I am in and out of the water I decided to keep my compression on.  If I'm on shore reading etc, I made sure to keep Bertha elevated.  I've become pretty creative with how I elevate; an floatie no one is using, cooler or another chair.  If it's really warm out it might be worth skipping the sun bathing and sitting in shade if it's available or keeping a wet towel over your leg while you elevate.  My melanoma wasn't sun related however I am very vigilant of sun exposure and always wear a high spf, try to wear a hat and lightweight wrap when out of the water.  Another huge tip drink a lot of water!

After the day at the lake is when the sweat, blood and tears kick in.  I feel like removing a compression stocking should be an Olympic sport. If not that, then fore sure trying to put one on after being in water and out in the heat, which has surely expanded your Lymphie leg.  And to top it off add a tent that feels like a sweat lodge.  Ok, so I have my wet, dirty compression off, now the fun beings.  Being in a lake you may find debris in your stocking, which is now molded to your poor lymphie leg and foot.   At this point I'm sweating, so I would lay on my air mattress and let my leg naturally dry for a bit.  After I catch my breath, ha ha, I'll take baby wipes and wipe my leg down to make sure it's clean (side note: where I am showers at campsites are closed due to COVID 19.)  Don't forget in between your toes!  Next I'll take my  extra clean towel or paper towels to dry Bertha off.  At this point I lotion my leg and foot.  At home I use Kiehl's Creme de Corps, but camping I use Banana Boat's after-sun lotion with aloe and vitamin E.  I know a lot of Lymphie's also like to use Medline Remedy Olivamine Skin Repair Body Lotion.  I'll let the lotion soak in and now I hydrate for the final portion of our new Olympic sport "getting a new clean compression stocking on."  I joked with my friend and said "if our tents rocking, it means I'm getting on my stocking."  Dad joke I know, but I thought it was pretty clever.  When I put on my compression I start with my toes and foot and gradually (with the help of gardening gloves) put my stocking on. Ta da!  This took 2 hours and now it's time for bed.  Of course I'm kidding, but make sure to leave yourself time for this process.

After Lymphedema Olympics it would be time to have dinner and sit by the campfire.  I wanted to be sure to keep my stocking as clean as I could, so I always wore closed toe sneakers or my old pair of Uggs.  As you'll see in my below picture I wasn't trying to compete in America's Next Top Model, it was all about safety and comfort.  I preferred my Uggs since it was easy to slip them on and off.  In the evening I would bug spray myself and also my compression stocking.  This hopefully will prevent any bug bites which could lead to an infection in your Lymphedema limb.  I would also elevate with a Zero Gravity chair, they are a bit spendy, but so worth it!  My husband bought one for me last year and it has been priceless!  At night when I went to bed I would take off my compression stocking and if needed re-apply my after sun lotion.  Then put on my nighttime Tribute, which is an added bonus, because it keeps you extra warm on those chilling tent camping nights.  There is a silver lining in almost everything, right?!

So that is what I have found to help this Lymphie Lady.  I would love to hear if you have an tips or tricks when it comes to camping with Lymphedema.  It does take added time and thought, but for me it was so worth it.  My kids are in their element when we camp and nights talking with good friends around a campfire makes life that much more sweet.  I know it sounds like I'm singing Kum Ba Yah around our campfire-trust me there were moments it was super frustrating to have all of the added steps while camping.  I had moments of jealousy seeing my girlfriends go from lake to camp with a 5 minute clothing change. Hearing the rest of our group talk and laugh while I was in my tent wrestling Bertha into a Class C compression, but like I say they are moments.  When I step back and take a look at our camping trips I see traditions our kids will remember, good times with good friends, being in nature alone and breathing in fresh mountain air really is healing for the soul.  

So if camping or another activity appears daunting to you, that's probably because it is for us Lymphies.  My advice would be to go into it with eyes wide open.  Make a list of what you need to stay healthy, give yourself grace and give yourself permission to ask for help.  But my hope and prayer is that it wouldn't stop you from living life and experiencing those adventures that you long for.  Cheering you on! xo-Allie

*I am not a medical professional, these are only thoughts and ideas from a patient learning to live with Lymphedema.  I highly recommend you find a certified lymphedema therapist who can help you navigate your life with Lymphedema and the best way to care for it.

View from my Zero Gravity Chair.

Me & Bertha living it up on a kid's floatie.

The person who makes my world go round
and is the reason I'm able to have the experiences I do.