8/15/2023 0 Comments making changesI've done the pump and wrapped with my velcro wraps every day for the last week (well, I didn't use the pump over the weekend, but did use the wraps.) For me, it's time consuming. I wonder how folks that work a full time job do this? Or do folks suffering from LE so bad that they need the pump work at home (if they work)?
Sure, I sleep late, and that's because my dog tends to want to be vocal and nutty between 1 and 3am. And that is part of the time consuming issue. I get up, I eat breakfast and get moving, then after I drink some of my coffee, I do the hour pump. After that, it's afternoon already! And I didn't know until last week that a razor like Lady Bic, is a no-no for LE. Sure, I read folks talking about it, and I was like "meh, it's fine". But even if you're careful, you can nick your legs with those. And a small nick can get infected. And with LE, infections are hard to treat and don't like to heal, and can turn into a bad infection. I made a decision to not try my luck. I have been using those razors since I can remember, because battery operated ones never seemed to work. BUT, I ordered a battery operated one last week. I looked at this razor like "how do I use this thing?" LOL. I guess it will suffice. I mean, it has to. But it's really loud, and I don't like that about it. Side note - when I was little, my Gramma asked me if I was shaving my legs yet. Then she told me that when you get old like her, the hair on your legs stop growing and you no longer have to shave. I can't wait till that day!!!
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8/11/2023 0 Comments Movement is keyI'm learning that movement is key to Lymphedema. And 95% of the time I am sitting. If I'm writing, reading, researching, creating promos, creating covers, posting promos, etc, I am sitting. Of course the suggestion is to get up and move once an hour. Is that realistic? No. When you're "in the zone" doing whatever job you do, getting up to move stops that focus and trying to get it back is difficult.
Sounds like excuses, I know. Now, I know I've gotten lazy, but my issue is when I'm busy/in the middle of something, it's not laziness stopping me. And I saw a social media post "when doing chores, take the steps more than once, and march up and down the steps" because a pumping motion of the legs help get the lymph (fluid?) moving. I don't explain it well, but it's a thing. Too bad the first thing that popped into my mind was "I can't do that". Because I can't. My knees are really in bad shape. Walking up the stairs is a huge chore at the moment. I feel like I am mountain climbing, For real. I avoid our stairs until I can't avoid them anymore. (And walking down the steps for me is like I'm in a free-fall. It sounds ridiculous, but the clicking and grinding of my knees is so uncomfortable, I just start moving and am literally falling down the stairs.) The ease this woman is marching up and down the steps makes me jealous. I have been seeing a specialist about my knees, which is why I know what is medically wrong. They are mostly bone on bone, little cartilage. So I sort of lit the green light on gel injections. I say sort of, because my insurance could not give me a cost for them until the doctor put in the orders. So, the orders are in, now I need to find out the cost before I go any further. BUT, if by "fixing" my knees will allow me to move more freely, then I can start paying attention to my movement and work on moving to help my lymphedema. I realized that I need to take care of myself. I'm not even 50 yet and I feel like I need a chair lift to get up the stairs in the house. If the injections don't help, then at least I tried. (If they are affordable that is) I have been trying to march or "pump" my legs more often in an effort. And any little effort is better than no effort. I'm doing the pump in the morning after breakfast, then wearing the velcro wraps until bedtime. (Well, on my right leg. I tried both on Tuesday and overheated!) Week one of focusing on this. Let's see how it goes. I'm still hoping it doesn't come to the most aggressive treatment, which is the short-stretch bandage wrap. But I'm doing some research on it, to get a feel for what it is, what limitations it will cause, and just all around info. I did see a post that someone has to wear socks 24/7 with theirs, and that grossed me out, lol. I hate socks. I know, I'm weird. But I go barefoot when at all possible. And if I'm outside, unless I am doing lots of walking, I am in flip flops. (that is one thing LE changed for me. My feet get tired quickly if I wear flip flops to the store. I feel like I am dragging my feet around after not being there too long.) If I have to wear shoes and socks, as soon as I get home the shoes and socks come off! And sleeping in socks makes me crazy hot (I blame perimenopause). So I am dreading it if it is my reality, but for now I'm doing my part in the hopes it will be all I need. But on a high note, the aggressive wraps really do work. Do they keep the swelling from coming back? I have no idea. That's my next research. 8/9/2023 0 Comments My Lymphedema photosThis is what my legs look like on any given day. I've gotten used to the stares. I've been dealing with those for 20 years. But wearing the velcro wraps in public is new for me, I just got them a year ago and try to only wear them in the house. I'm always hot, so I wear shorts in the warm weather, no hiding the legs in shorts and flip flops! Just a PSA, don't stare. Ask if you're curious. But I'm probably more self conscious then you think, and staring makes it worse.
8/8/2023 0 Comments What is Lymphedema?The thing about Lymphedema is it is never going to go away. There is no cure. You can't go to a doctor and get it "fixed". It's a life of managing the symptoms, and making sure it doesn't get worse. And you do that by MLD (manual lymphatic drainage) massages, compression wraps, and a flexi-touch pump.
I usually don't wear my velcro wraps out in public. They are hot and I feel weird with them on. But I did today. We needed milk and I just had my therapy appointment with the LE Specialist. I had my MLD massage, and she put my compression socks and velcro wraps on. I decided to do my errands not realizing how HOT it was outside. I'm sure no one was staring, but I felt like they were. But that's on me. I am used to people gawking at my swollen leg (when I'm not wearing the wraps) and I wear my flip flops and shorts with no cares, but the wraps are so obvious, and most people have no idea what you have on or why. I enjoy the trips to the LE specialist/therapist. It is about a twenty minute drive for me. It gives me time to listen the the radio, sing along at the top of my lungs, and just drive. I don't have that many places to go anymore (besides the grocery store) and driving alone has always been therapy for me. Let's not forget that my therapist is super nice and down to Earth. It's always an enjoyable visit, and I know when I leave I am going to feel great. My usual legs feeling heavy (like cement or like I have ankle weights on) is gone and I walk out to my car after with my legs feeling light. But the rest of the week is on me now. I'm trying. And I am lucky that my legs are still in the early stages of LE, BUT if I continue to ignore the issue, things are going to progress. And once it progresses too far, there is no going back. And the humidity this summer has been wicked. That makes my legs/feet swell no matter what I do. Maybe someday I will get my legs to the point where I only need to wear compression stockings to keep them from swelling, but right now it is what it is. I am lucky I found the doctor and therapist that I did. It only took me 20 years to find them and get an actual diagnosis that wasn't "You need to lose weight". While that may be true, it's not the cause or the "fix". I do wonder where I would be right now if I had started this therapy 5 or more years ago. I will say when I found this doctor, I did assume there would be a fix. That after seeing them last year I could wear cute sandals that summer. That's not how this works. (It's not how any of this works, lol) Luckily I can still wear flip flops, I just have to find ones that are wide enough for my swollen foot. Tennis shoes are more difficult to find. I had bought a pair from Skechers that were the perfect size, they had stretch and fit my foot perfectly. They no longer make those kind, and trying to find WIDE Skechers is like finding a needle in a haystack - when they used to have lots of WIDE and even EXTRA WIDE. I'm not complaining, it could be much worse. I just need to be motivated to not let it get any worse. |
AuthorI am living with Lymphedema for the past 20 years, however I wasn't diagnosed correctly until summer 2022. There is no cure, just managing the swelling and uncomfortable heaviness. I am now trying to learn how to make managing it and incorporate it into my daily life. Archives
January 2024
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