Sometimes Lymphedema just feels awful!!

This article was sent to me by Jennifer, she wanted to be able to share her anger and grief at the way Lymphoedema has changed her life. To let people know that we are just men and women trying to deal with a very difficult on going situation. That we are human in our sorrow and anger at what has happened after cancer treatment or because we are born with impaired lymphatics…. We were not prepared nor did we have any insight into what it meant to have Lymphoedema only fellow Lymphies understand that. We can stand like soldiers and be strong and positive but there are times that this is just not possible… There are days that we feel like Jennifer when she wrote this.. Thank you Jennifer for being so honest, I can relate to all you say and I am sure others will too.

imagePersonal commentary – Living with lymphedema
No one really talks about how angry they feel about getting Lymphedema. Well I’m spitting mad.
First, I was incredulous about my condition. I watched as my leg swelled to twice normal size, I struggled with wearing shoes that fit, the edema in my ankle spilling out like dough. My toes ached from being squeezed.
I remember my intense feelings of resentment toward my physical therapist who explained to me what was happening to my leg. Yes, there was a therapy to treat the condition and no, there wasn’t a cure. You will have to live with this.
The first feeling of anger is due to the loss of control to what your body is doing. NO one told me about lymphedema. No doctor ever explained the consequences of my surgery. They let me find out for myself, years later what would happen. Now, thankfully there is a plethora of information on the internet.
I wasn’t really angry at my therapist. She did an amazing job. She was able to restore my leg to a near normal size after 3 weeks of intense therapy. My life as I knew it stopped then. I lived in South Carolina at the time; it was hot in the summer! I remember working in the garden planting and weeding and fixing up an older home on a busy corner in a small town. I was in a pair of shorts and a thick Juzo stocking on my leg. I felt that most intense internal shame looking at my new peach colored heavy knitted leg.
Sometimes, lying on the couch with my Lymphedema leg propped up on the cushion to ‘drain’ and rest it, I would have conversations with my alien appendage. “Why?” Why do you swell? When is it going to stop?” But it will never stop. And, you know that because you have been ‘educated’ about the condition. The therapist smiles and babbles on and tells you how great you’re doing. The therapist is a hero but I hate what she has to say.
…You can’t stay in the sun. You can’t take a hot bath, you can’t get a pedicure, watch out for insect bites, make sure you wear proper protection. Etc., etc….
My leg gets tired. I live in fear of making my swelling worse. If I sit too long, if I stand too long, I can feel the pressure growing in my ankles and knee-joint. I used to like to walk and jog and work-out. Now, it feels like whatever I do, I make it swell.
I have 3 dogs who want to be walked. So I take them. They don’t see the heavy stockinged leg woman; they see only the able-bodied person I once was. So I go. I walk more and more every day, encouraged.
I forget about my leg while I walk. The therapist encourages the exercise. “You want that muscle to contract and push the stagnant lymph out.” But I’ll never walk enough to clear it out completely.
I will speak only for myself, but I’d like to include others in general terms. Please forgive me if I’ve spoken out of turn, but we’ve been stoic about our condition. I just want to express that I am really pissed off about this.
I play a mind game where I go back to the day I had surgery. I try to re-play a different scenario for myself. It’s an endless loop as I know full well that I can’t reach back in time and re-write the ending. I can live with the actual surgery that was necessary to save my life. But I can’t live with lymphedema. Nope, I can’t. I often think that I would prefer to have a condition that had no outward visible signs. Wait a minute! Think about what you are saying. You shouldn’t have to make deals.
I keep on going because I have to, because I am so much more than the edema trapped in the tissues of my leg.
I go into surgery again for a lymph node transfer to try to repair the damage with the faith that I will come out alive and whole. Does anyone really express this fear? We must be brave soldiers, like my mother used to say to me when I was a kid.
There are risks….But I’m a good soldier.
I’m scared witless. Do you understand? Surgery is how I got into this nightmare. Now, surgery is going to correct it? I hope so. Must I sacrifice another part of me to restore myself? So, I’m angry. I put myself in the care of highly skilled surgeons who have taken an oath to do no harm. I believe them.
I know that I am not alone in experiencing the humiliation of having to expose a swollen, wrapped, and compressed in elastic limb in public. People make furtive glances, others stare. I feel like saying, “Did your momma never teach you not stare?” I say nothing and find a small cubby hole way deep inside of myself to hide. Other times I make snarky comments, “Oh, it’s an old injury from when I was a flying trapeze artist in the circus.”
This soldier has taken a major psychological hit. My wounds are visible to all. But I’m not a soldier, I’m a middle-aged woman who struggles through existence trying to compete like everyone else, but I must do it with an enlarged aching limb. I’m left to fight the insurance giants, fight for enough time with a physical therapist, and take a frightening step to have additional surgery to restore maybe 50% of what I had once before.
Someday, maybe 20 or 30 years from now, they will have a better solution for us. People will not have to be such courageous soldiers and bravely walk into the unknown. JEM

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29 thoughts on “Sometimes Lymphedema just feels awful!!

  1. A very eloquent way of putting exactly how I feel too – commiserations and big virtual hugs sent your way…and to all fellow lymphies.

    • So true… But doctors do not see it as significant… When I asked my surgeon pre cancer surgery about the lymph node removal his only response was” it’s better than being dead”… End of discussion!!!!

  2. wow.
    spinning straw into gold is immensely frustrating – and from your commentary Jennifer, it looks like anger is giving you the power to do so! to share your story rather than hide in your cubby hole, to be there with and for others, to say no to all that furtive staring and inappropriate pity… thank you for sharing and for being pissed off… put your boxing gloves on and go for it! 🙂

  3. This post resonates and echoes how I feel on a daily basis. The hardest part is when folks don’t understand what lymphedema really is. It was the same when I was paralyzed for two month’s in a wheelchair because of Guillain-Barre Sydrome and my father did not believe me. That truly broke my heart. Thanks for sharing, best wishes. JBC

  4. Pingback: News from Jennifer … March 2014 | My Lymph Node Transplant

  5. Reblogged this on My Lymph Node Transplant and commented:

    As we approach world Lymphedema day on March 6th I am sharing stories of what it is really like to have Lymphedema … This was posted a while ago but I felt it would be good to share again …. If you would like to share your story please email me at helenbrd@bigpond.net.au Just write your story as an email and I will create a post out of it … Thanks Helen

    • It is a pity because talking helps so much and we should not be ashamed.. It is sadly all part of the self image that we carry.. Lymphedema effects our appearance, the clothes we wear and how we feel about ourselves….. These are the things that only another person with lymphedema would understand … That is why I am sharing peoples stories…. Even my closest friends and family did not understand till I wrote about it..always here for you Kit to talk …

  6. Hi:) thank you for the article! It is nice to hear what we are feeling. I had the surgery on my arm–a year later I am seeing true results. I hope the same for you.

  7. Excellent article, Jennifer. All of your feelings resonate with those who’ve had their life change through cancer surgery. We are told to be grateful that we didn’t have cancer anymore; but living with a chronically large limb ….that only gets worse every year, is more than we bargained for. Good luck! The surgeries have helped me. I had the LNT in 2014 and just recently (December 2015)had the SAPL. I now feel like I’ve gotten 10 years of my life back!! 😊 seriously! I don’t know if everyone needs both surgeries, but i did…and yes, they are both unsettling….As surgery got us into the lymphedema world in the first place. If you haven’t explored the SAPL option to see if it’s appropriate for you, I couldn’t recommend it (and Dr. Granzow) more highly! For the first time in years, I am starting to feel like my old self. Wishing you the best! 💪😊

    • Hi Jeanie I am so glad to hear you are going so well …it is great to see this surgery improving all the time… Would you be interested in telling your story of the Liposuction SAPL treatment as no one has done that so far… It would be great for people to understand it a little better.. You can email me helenbrd@bigpond.net.au even if you just email me bullet points I can create an article… But ok if not … Dr Granzow is getting a very good reputation… Helen

  8. Pingback: Update for Sometimes Lymphedema just feels Awful | My Lymph Node Transplant

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