Happy New Year, lymphies! I got a feeling that this year will bring on a lot of changes – good changes – and I can only hope you all are feeling similar positive vibes.
One of my resolutions for 2012 is to keep up with my MLD and wear my compression garments more regularly. I’ve been so, so bad about it recently (well, a little longer than recently) and I know better than that. You all have taught me, through your emails and comments, the consequences of slacking off in lymphedema maintenance, and I’d be really dumb – and a little hypocritical – not to heed your words as well as my own preaching on the blog. So this year, I’m going to work extra hard at wearing my garments and practicing MLD on a daily basis. Scout’s honor!
I think the reason I’ve been so bad about maintaining my lymphedema is denial. I feel like if I ignore it or don’t wear my compression garments, it just isn’t there. Obviously, this isn’t true – just a day or two without my garments and my leg feels swollen and heavy in protest – but I stupidly cling to the denial because I’m still really insecure about my lymphedema. I’ve definitely gotten better about it, a little more accepting, but it’s something I struggle with a lot. Acknowledging my condition by actively taking care of it will probably assuage these fears, I think.
So – here’s to a new year, and a new resolve to take better care of our health!!
What are your resolutions for the new year? Do you have any that relate to your lymphedema?
I also need to keep up with the therapy for my LE…..it’s so boring. 5 days a week with therapist just doesn’t appeal to me along with all of the compression bandages and such….
I agree about it being boring. I think that’s part of the reason I don’t do it – what other 21 year old has to pull on nude-colored medical stockings each morning and massage themselves daily? Buhh. But – we gotta do it! Even though it’s boring and unappealing, it’s for the best. :)
Great fireworks photo! I need to resolve to make sure I use my feeding pump every single day. Unless I have proper nutrition this lymphedema won’t get under control. Swelling in my face and throat (head & neck cancer) prevents me from swallowing. Haven’t been able to eat since May 2010. No more cancelling therapy appts. Hard to go out or go to work as lymphedema in your face is disfiguring and very depressing. 2012 must be better than 2011……one year cancer free!
Thanks! Google is such a good resource for stock photos : )
I think those are great resolutions, Julie. You really need to keep up your care, even though it’s so tempting to take the easy road and not do anything. It’s easier to wallow and feel self-pity instead of being proactive, but you need to push yourself to do it. You’re one year cancer free – you can do anything!!
Good vibes and well-wishes to you for the new year!
You were talking about wanting a pair of compression stockings in a leopard print. I did finr one site called RejuvaHealth that has all kinds of prints and colors!
“What are your resolutions for the new year? Do you have any that relate to your lymphedema?”
I didn’t think I had any resolutions, but, thanks for the reminder – taking care of our Lymphedema is vital! Part of the reason why I haven’t posted in a while is because recently, I was hospitalized for a few days with Cellulitis – a inflammation caused by bacteria entrering through a crack in the skin. It was terribly painful and it made getting up and walking a few feet incredibly difficult.
Having Lymphedema makes us susceptible to getting Cellulitis. Because I’ve had Lymphedema for almost all of my life in my left leg (26 years), I’ve had several bouts of Cellulitis within the past five years, or so. On average, probably once a year. This is a problem because every time this happens the skin degrades. I have tiny bumps (papillomas) below my toes on my left leg, probably, the result of having Lymphedema for many years. This last occurence was in my right leg – for the first time ever, and as one doctor put it, “it was angry.” I was scared, and I feel like I live in fear of getting Cellulitis, especially when I feel run-down.
So, for me, I’m scared of the consequences of living with chronic Lymphedema. That’s enough reason and motivation to wear my compression garments (however tan they may be, although I own one pair of silverish-gray stockings), seek physical therapy for MLD – which is WAY more relaxing than if I did it on my own!!!, use my pump – a godsend!, with a timer for one hour per leg per day, and either wrap my legs traditionally, with short stretch bandages, etc., or use my Circaid compression garment at night.
It’s critical to care of ourselves, whatever we can do – it’s better than not doing anything! For many years, I either gave up or didn’t know of any resources and wasn’t educated. I’m not perfect and I slip up sometimes, but, I feel really guilty when I do so. If we don’t take care of ourselves physically, how can we be the best person we can be? For me. my overall health and well-being depend on it.
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I do know how you both feel about this wrapping thing. Oh my. I thought I had finally found the perfect balance in November and didn’t need wrapping any more. Just wear the garment, go to bed, get up, repeat. Wham, I got a wakeup call on that one! The left leg just slowly got bigger and more uncomfortable (even wearing the Juzo garment every day) until I realized how out of sorts it was. The once “good” right leg had its thigh high over-the-counter Juzo on every day. And then there’s the new area to contend with. So now every day I have to get up earlier to put on the thigh high, wrap or Juzo the left leg, and now I also have to wrap the man-parts. Lordy. I was so depressed when that started I swore I just couldn’t live like this. But here I am, adapting. Yes, we do need a “scream room” every now and then, don’t we? Someplace to just go and shout and punch and swing and scream. Then go back and deal with it as best we can.
Still looking for that cycling sleeve for the Spring season!
I just got a second opinion from a new doctor and she said I have a LOT of lymphedema inside my throat. This is why I have the trouble swallowing/eating and can’t sing as of yet. Just so scared when I read this blog that this will never go away. It’s getting better in my face, but I can MLD and wear garments there – can’t do much for my vocal chords and epiglottis!
First of all – sorry for the late response! For some reason the comment notifications get swallowed up by my inbox.
Secondly – ah! I don’t know what to tell you – I’m not all that familiar with lymphedema in the throat. Did the new doctor give you any advice as to how you can alleviate some of the swelling? Have you been able to find anything online about treating it?
I told my therapist about this blog and how I felt for you wrapping and massaging every night. She asked if you had a therapist or if you were being treated. She was worried that you didn’t have a trained lymphedema specialist to help you. She’s really great – Maureen McBeth at Mercy Hospital in downtown Baltimore. All she seees are lymphedema sufferers. She’s really helped me a lot.
I’ll have to check her out next time I’m back in Baltimore. I usually go to GBMC but haven’t been in a few years.. I’m definitely overdue for some sort of checkup. I have no idea what the status of my lymphedema is right now from a medical standpoint; I would love some sort of perspective. Unfortunately, I don’t think there are any specialists up here in Burlington, so I’ll have to wait until I’m home again! (Thanks for recommending her, too.)
You really should. She’s so cool and nice and really is dedicated to lymphies! She took a group to DC to lobby for a bill that would require medicare to pay for garments, she teaches and is just so devoted. She’s on Facebook……
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