Hello, lymphies!
It’s been a while, and I apologize (once again) for my inconsistencies in posting. I know I’ve been doing that a lot lately, but life has been hectic and with so much going on, the blog has unfortunately fallen by the wayside. I am embarrassed by all these “apology” posts and will be trying harder to post more regularly, because even though I’m not posting, lymphedema is always at the forefront of my mind. So please bear with me as I get things back on track! I love all of you so much and am so grateful for your readership and emails – and most of all, your patience! You guys rock!
Anyway – onto the post:
These past couple weeks I’ve been corresponding with a fellow lymphie who reached out to me because he’s been struggling with his lymphedema. This lymphie – we’ll call him Charlie for the sake of privacy – was concerned. His lymphedema, although mild, has the potential to spread to his “good leg,” and he’s worried that it will happen soon: “Sometimes I feel like I am facing a ticking clock, ticking down the number of days in which I can live a semi-normal life, or at least appear to do so to the outside world.” Charlie’s anxieties have been getting worse as he prepares for some big life changes, and he’s afraid of moving forward only to be set back if his lymphedema worsens and ultimately disables him.
I can’t say that I blame him – I’ve had these fears run through my head before, too. I’ve been lucky in that my swelling is mild compared to others, but that doesn’t minimize my fears of it someday worsening or spreading to other parts of my body. I could totally relate to his analogy of facing a ticking clock, because having lymphedema is a lot like facing the unknown. It’s hard to predict how it will change and when, if at all, and the not knowing can be maddening sometimes.
I told Charlie that the best advice I could offer is to stay in the moment and take care of his body each day. Nobody can see the future, so there’s no point in stressing about it as long as we do our best every day to take care of ourselves and maintain our lymphedema, our minds, and our emotional health. When living with a chronic medical condition, it’s totally natural to have these fears and insecurities, but it doesn’t have to control us.
Here are some tips that I use to bring myself back to earth when my anxieties start to get the best of me:
- Acceptance. This is a tough one, but acceptance is key. Whether it’s accepting my lymphedema or a current situation I’m in, it’s important for me to reach that point and find peace in that whatever is going on is meant to be and it’s best to just go with the flow rather than fight it.
- Acknowledge my feelings. This goes along with acceptance. Sometimes I just need to acknowledge either to myself or to a trusted support person what I’m feeling – it helps validate the feelings without giving them power to control me.
- Practice self-care. What is it that I need right now? When it comes to my lymphedema, if I feel things aren’t comfortable or right, I take the steps I need to take care of myself: elevate my leg, practice manual lymphatic drainage, move around to get circulation going. And sometimes, self-care means taking the time to paint my nails or do my hair, because when I do these little things, I feel special and a lot better than I was feeling before.
- Positive self talk. I talk to myself a lot. When I’m feeling anxious or upset, I talk myself down (sometimes out loud if I’m alone). I acknowledge the situation and my feelings, and then reassure myself that these things are not permanent and that whatever I’m experiencing will pass. I also take the time to put things into perspective for myself, because sometimes I need to state the obvious to get myself out of a weird headspace.
- Be still. This is a little like practicing self-care, but I thought it could use its own bullet point. Taking the time to be still with myself does wonders for my sanity. It’s a little difficult at first – especially if your brain is buzzing with anxious thoughts – but once you get into the practice of doing it, you’ll be making it a part of your daily routine. I like to do it when I’m brushing my teeth or laying in bed getting ready to fall asleep, but sometimes I have to take a few minutes out of my day to step back and breathe.
What are some ways you come to terms with facing the “ticking clock”? Do you feel like you’re facing a clock at all? How do you practice acceptance when living with lymphedema?
Diagnosed with lymphedema 30 years after my bout with Hodgkins Lymphoma. in Jan 2014. Channeling my anxiety/anger to getting awareness and better coverage for lymphedema. Going to Washington DC, Sept 7 – 9 for Lymphedema Lobby Days.Meeting with Congressmen and Senators to help get support for The Lymphedema Treatment Act. Check out thelymphedematreatmentact.org and write your Representative. This keeps me focused.
I’m a primary lymphedema tarda and my scans showed no lymph fluid uptake in either leg, but only my left leg was affected – it happened overnight and progressed very fast. Thankfully, I got through the trauma of the wraps so that I could hold the size with compression – I NEVER want to go through that again. It’s taken me a year to accept wearing 30-40 mmHg pantyhose every single dang day. I feel like as long as I continue to stay in compression, I don’t have to worry about either leg. The only time I hear that ticking clock is when I start to think to myself, “what if I just didn’t wear my stockings just for today?” I know what will happen, so I grudgingly put them on.
How about some good news! Is anyone else aware of new upcoming therapies which will push the archaic and draconian wraps, etc. to the wayside? Google Dr. Stan Rockson from Stanford Hospital near San Francisco. There is something called a biobridge coming out next year by Fibralign. Also, an already FDA drug therapy being re-purposed for lymphedema therapy for next year, too. Both are like almost 100% effective! Not to mention Lymfactin Drug which will be ready in the next few years from Finland and California studies. Lymfactin IS being hailed as a near or absolute cure. Plus many other options soon to surface to greatly improve lymphedema, amongst other diseases. Think positive and heads up. The end is around the corner!
Calgary, Canada
I probably should be more worried about my lymphedema than I am. The condition in my one leg has put me in the hospital for cellulitis three times, and therapist who worked on my leg following the last visit told me that I was showing signs in my other leg. For whatever reason, it just doesn’t bother me. My daily routine has just incorporated using my custom sock, and (occasionally) self massage. I keep a round of antibiotics ready, just in case I feel the early symptoms of cellulitis coming back. (This has happened once since my last hospital visit — the one when I was first properly diagnosed with lymphedema — and I came out just fine!)
I’ve had the characteristic lymphedema swelling in my left foot since high school, and I’m now almost 40. By now, the condition is so normal to me, I’d probably freak out if I woke up with a normal foot tomorrow! I’ve never encountered an activity that I couldn’t do because of my leg. It doesn’t bother me to wear shorts. If someone asks me about the sock, I tell them (usually more than they want to know). When the day comes –and I know it will, eventually — that my right leg’s swelling gets to the point I need to actively care for it, I will. No big deal. I have friends with type-1 diabetes. Now THAT’S a pain to deal with! Restrictive diets and daily shots are not the routine of the lymphedemic. I know I’m not giving it the seriousness that is deserved, and I suppose it’s a coping mechanism of sorts. The truth of the matter for me is that, with the right daily care, lymphedema simply has no significant negative impact on my life. It’s as much a part of me as my bald head and the astigmatism in my left eye. I can’t fix any of them, so I live with them.
I have lived with primary lymphedema all of my life and I am now 50 years old. It is in my left leg and I don’t remember it not being there. As a child I hated my leg so much, I can remember cutting into it with a knife in the hope that the fluid would drain away. I never wore skirts or dresses if I could help it and at school kids used to make fun of me because I had to wear a skirt so my leg was on show, Once a year I had to go to the hospital for a “check up” but the doctors had no idea what was wrong with me.
In my teens I was given diuretics but they did little to help. I could never buy shoes to fit and my leg felt heavy, clumsy and sore. I was acutely embarrassed about it and went to great lengths to hide it any way I could. Boyfriends seeing it would make me want to curl up and die.
And so it went on until aged 40 my GP referred me to an appliance centre to be measured for a support stocking. It helped a bit with the discomfort but did nothing for the deep sense of shame and lack of self acceptance that I had lived with all my life.
I love the sun and holidays abroad but the embarrassment I felt always impacted on my enjoyment.
Then a year ago a friend of mine told me about a lymphedema clinic at the local hospital. I rang them and went along to meet the nurse, not expecting anything really but willing to give it a go.
My leg was measured and I was told that I’d been wearing the wrong kind of stocking for the past 10 years! They ordered me two heavy duty, toe-enclosing mega tight stockings…it was like a workout trying to get them on! But I persevered and the relief I felt with the right support was unbelievable. My leg no longer felt enormous and I could walk around without the discomfort, especially noticeable later in the day.
I was taught to do lymphatic drainage massage and given lots of useful information to read. It was the first time I felt comfortable in a medical environment. I was used to doctors taking photos of my leg and not being able to help…in fact I usually felt like a freak. But here at the clinic I felt like my leg was not such a big deal and the wonderful nurse understood how I felt about it.
The whole experience has been very freeing for me and I feel that I have finally reached a level of acceptance around my leg. I no longer wish I could cut it off (yes that’s how much I hated it) but feel more that it is just a part of me now.
I have it measured regularly at the clinic and it has unbelievable actually gone down a bit. And this year I went on holiday to Greece and honestly didn’t care about it being in photos! That is a huge change for me.
I really try to take care of my leg now and it is no longer something that I think about all the time.
So that’s my experience of coming to accept my leg…I don’t quite love it yet but I can honestly say I like it a bit…it’s a work in progress :)
Hello Calgary… Where did you get all this positive news and do you know about any updates maybe :) ? Thanks!!
I know abou some off these things but it has been so quiet last year i hope they are still working on these things…
Same situation – primary, one leg. I wear a class 3 stocking with 20-30 compression, thigh high. Only three months after I got my LE diagnosis I landed in the hospital with a raging cellulitis infection, and while I subsequently found a very good lymphedema clinic where I learned to wrap, do MLD and everything else, the trauma of that experience has given me anxiety about the same thing happening again – probably a form of PTSD. I see a therapist and things were going quite well – traveling to the tropics, working long hours with my leg wrapped – but then I got a very light case of cellulitis just last week. (The summer here was hell – 95 degrees for 10 days in a row, incredible humidity for weeks after). Though it was so light the dr said I was okay stopping antibiotics after four days, it’s brought back all the fear again. I’m sure I’ll overcome this and come out stronger – and I’m going to directly face the trauma of what I call the Cellunado in therapy to trim concern down to size – but right now I’m in a rough patch.
Since I’m primary and chances are good I inherited bad leg plumbing from my mother, who’s had bad veins all her life, the thought does occur to me that I may get it in the other leg, but I just don’t think about it. Not sure how I can do that successfully when the cellulitis anxiety can get so strong, but I can. Bests to all – great to have a forum like this!
It’s good to be aware of your situation, but don’t freak out. There are two big differences between your situation now and your hospitalization for cellulitis. First, you are now treating the lymphedema. This is huge. The cellulitis occurs because your swollen leg was a great place to harbor an otherwise untreatable infection. Between the garment and self massage, you are greatly decreasing the chances that you will ever find yourself in the same spot. Secondly, you know what it feels like to have cellulitis. It’s not an easy thing to forget. I’ve been hospitalized three times for cellulitis. It was only on the third hospital visit that a doctor finally diagnosed cellulitis, and I haven’t been back since. On the second and third times, I knew what was coming on immediately, while pain was still low enough I could walk. If you find yourself in the same position, call your doctor and DEMAND to be admitted immediately. Do not take no for an answer. Treating the infection early will get you out much sooner. Even better, ask your doctor for a prescription for something like Bactrim. Fill it, and keep it with you like it’s your security blanket. If you feel early symptoms of cellulitis coming on, start taking it immediately, then call your doctor. You might be able to avoid a hospital stay altogether.
I am nearly 40, and have had obvious lymphedema in my left leg since high school. I was hospitalized twice for cellulitis in 2008 –‘both times for a week, separated by one month. Following the second stay, I started wearing an off-the-shelf sock on my left foot daily. It wasn’t until 2012 that I got cellulitis again. I knew what it was very early, and went straight to the ER. The ER doc didn’t see a problem other than my fever, as the swelling wasn’t horrific yet, and there was no redness. He sent me home with Tylenol. I was back the next day with a 105° fever, and I had to be taken into the hospital in a wheelchair. A week later, they told me that there was a question as to whether I would make it out alive. I did make it, obviously, and I did do with a lymphedema diagnoses. I started physical therapy with therapists trained in lymphedema therapy within a week. I learned how to wrap myself and do massage. Once I was down to a good point, I got measured for a sock, and have worn one nearly every waking moment since. Last year, I spent a few hours in a hot parking lot directing traffic, and had a cellulitis scare that evening. I took my Bactrim prescription, and was symptom free by morning. (I still following the prescription to completeness.) Earlier this year, I noticed some swelling in my right leg. I asked to be measured for a sock in that leg while I was getting a new sock for my left leg. It’s been a good experience, overall.
Other that wearing socks and doing self massage, I live a normal life, and I no longer have fear lingering about the cellulitis. I know you can get to that point too. Optimism is a good thing, and with a plan on how to deal with new situations early, you can feel confident that the optimism isn’t a delusion.
Thanks. Yes, the hyper-awareness is due to other issues too, complicated by the fact that my LE diagnosis came at the same time as Japan’s biggest ever disaster, March 11. (I live in Japan). My therapist actually said my response to the recent scare showed that I know my body and can protect it – I already had antibiotics and began to take them that first night. (Which I had in defiance of my regular clinic, but whatever.) I’m just having one of those confidence blips….thanks for your response, it helps so much to know that other people understand. I’ve gone on pretty well normally too – scuba dive and ski and kayak and work long hours staking out demonstrations (I’m a journalist) – a moment of weakness there. It really helps to hear from somebody who understands.
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