9/21/2023 0 Comments "look at her socks"Today I felt really out of sorts. I was hot, so hot. (hormones) And I felt puffy. I thought for sure the measurements on my legs would GO UP. Well, they didn't! It was my monthly measurements at the specialist, and numbers looked good. That was a nice surprise, since I felt like I was puffy and bloated. And my drive home, I didn't feel energized or goofy like I usually do. Today I just felt tired.
Maybe it's my LE, maybe it's just me. Maybe it's just a bad day. I feel like I am all clogged up today. It's weird. Thinking it's my allergies. My nose is runny, and my sinuses are congested. Nothing tastes right to me. And I'm tired. So I'm going to do the pump later tonight. I usually don't do it on MLD massage day, but today I will. Hoping to get this clogged feeling gone. I bought a pair of compression socks last year, and I couldn't even get them on my leg was so big. I was going to return them, but I decided to hold on to them and save them for when my legs went down. They were cute and super soft. Last night I decided to order one size up. Then today I figured I would take them to my appointment and let Lori look at them, show her what I found. She loved them! They are pink and white. Super cute. Instead of my compression socks and velcro wraps, she tried my cute pink socks. AND THEY FIT!! Which means my leg has gone down since I bought them last year! She asked me to wear them until this evening and see how they feel (if they are too tight) I had been looking for compression socks I could wear if I was out doing something and didn't want to be in my velcro wraps (like a party, or shopping). I wore them to Kohls, (I also have pink Hey Dude shoes, and a pink purse and a pink watch) And older couple were walking towards where I was at. The woman "whispered" (too bad I could hear her) to the husband "Look at her socks" and he responded with "uh-huh". Now I have no idea if that was a "Look how CUTE her sock are!" or if it was a "Oh my, look at those socks! Ridiculous!" LOL... don't get me wrong, I DON'T CARE. I am just telling you this, because it is proof - people are going to stare. I'm sure if I had pink hair she would've said the same thing "look at her hair". And if someone would mention it TO ME "hey, cute socks!" then I would thanks them and tell them they are compression socks for my LE, so why not wear cute ones? I don't remember if I told you, but a few weeks back, I ran to Dollar General after my appointment. I have both legs in black compression socks and velcro wraps on when I do my errands after the appointment. I expect stares. I expect some to think they are leg braces vs compression wraps. Whatever. No one ever says anything. But this particular day, the cashier said "Cute pink shoes! I love how they match your purse and watch!" She saw my velcro wraps, but only thing she cared about were my cute pink shoes. That made my day! I chose to go four more weeks of therapy. It's working, and I want it to continue to work. I do my part everyday and feel guilty if I can't do the pump one day. Last week I didn't do the wraps twice, it was a day I was in and out of the house, or out doing something. It felt nice not having them on, and yet so wrong. I felt like I was letting myself down! But, this is the pattern I needed to get in. NOW...I need to get that same pattern with a healthy lifestyle. That is even harder than getting into a habit of using the pump. But I am pretty confident if I can do one I can do the other. Starting is the hardest part.
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9/12/2023 0 Comments down the rabbit holeOccasionally I find myself heading down the rabbit hole of searching WHY I have Lymphedema. When I was diagnosed, there was no clear reason as to why I have secondary LE. My symptoms didn't show up until after I had my son, 20 years ago. Well, the feet and ankle swelling started in my 7th month of pregnancy.
But of course, pregnant woman have feet and ankle swelling. So all the doctors said it was normal pregnancy swelling. I remember it clearly. It was November in Pittsburgh, and that time of year is typically cold and snowy. I don't remember how or when it got so bad, but I do remember trying to go to work, and the only shoes I could fit on my feet were my Birkenstock sandals on the loosest buckle. I waddled into work in those with socks. Goodness I looked ridiculous, lol. Eventually I had to buy shoes with one velcro strap to fit my balloon feet. I guess we all assumed after I had my son the swelling would go away. Spolier alert: it did not go away. So was my original swelling LE? No way to know. And why after I gave birth did the swelling in only the right leg stay? Again, no way to know. Every once in a while I search different scenarios and wonder if that is why I have LE. I've never had cancer, nor did I have surgery like that. My first lightbulb came when I remembered I had a pretty bad plantars wart on the bottom of my right foot in 7th grade. (I know, EW. Sorry) I also remembered having it removed and it wasn't pleasant. Might they have taken lymph nodes as well? And when you have surgery that removes any lymph nodes, you risk getting LE. Maybe. I also had a therapy done on my foot, where the dr injected things into the infected spot. Remember, when I was in 7th grade there was NO INTERNET. Yes - there was no internet. So we just knew what doctors told us. And not until now when I could search it, did I see that injection was probably a cancer drug. Could that medication have caused it? Who knows. Then today I see something online about adenoid/tonsil removal. I had that done when I was like 4. Luckily I vaguely remember it. All I remember was my dad bringing me a stuffed animal in the hospital, and the doctor struggling to put the mask on me to put me to sleep while I kicked, screamed and punched him. LOL. I was a peach, huh? Anyway. I don't even remember what I was reading, but I saw something about lymph nodes and adenoids. Suddenly I am like "WAIT... could they have removed lymph nodes when they removed my adenoids and tonsils???" My research gave me no conclusive answers. But is it possible? Who knows. Then there is the family tree aspect. In talking to my specialist/therapist, there is a possibility that my grandmother had LE, but not the kind I have. In relaying my grandmother's symptoms, it is possible she had Phlebo-Lymphedema. But, there is no way to ever prove that. When my grandmother was still with us, most doctors had no idea what LE was/is. Truthfully, most still don't. They just said she had circulation issues. So, that is another possibility for me. So I go down the rabbit hole from time to time and never get any real answers. All I know for a fact is that using the pump daily, and the velcro wraps is helping. I just need to stay the course. It's not a quick fix, just slow and steady. And no giving up. And honestly, WHY I have secondary LE isn't the important thing. Treating it and staying the course is what is important. 9/7/2023 0 Comments SLOW AND STEADYStill going to my LE appointments weekly. Two weeks ago we measured again, and within a weeks time I lost a cm here and there, but an inch at my thigh. My persistence is paying off!
I'm still doing the pump 5 times a week, and the velcro compression wraps daily, add in deep breathing and trying to do more moving like walking in place, and doing chores around the house to get the veins pumping. It is tedious. And most days by the time I lay down and use the leg pump for an hour, I feel like I lost my day and don't accomplish mush else. Just the pump, then wrap, then try to move and walk with the wrap on...it is time consuming. How do people do this with full time jobs? I am at home! It's not that I can't do things like sit and work (I think standing all day would be too much) but the therapy I NEED to do daily takes a lot of my time. Anyway... I'm rambling. I'm kind of all over the place today. I switched my appointments from Tuesday to Thursday, and it's left me all out of sorts today. My LE specialist/therapist Lori, today said that my leg felt good! She said it felt more palpable that it had so far. She was very pleased today with how it looked and felt. That is encouraging to hear. It means what I am doing is working and it makes me want to keep at it (as annoying as it is). Last week Lori was telling me that doing the MLD massage activates the lymph nodes. She said sometimes when folks leave their appointment they feel energized. That was interesting to me because typically when I leave my appointment I am in a really good mood. I figured it was because I was out in public, and had an half hour conversation with an adult (and we talk a lot about tv shows). I typically happily sing to the tunes on the radio on my drive home. Turns out it might be because of the massage triggering the lymph nodes and giving me a burst of energy. (she made it sound more clinical than I did, lol) Is it weird that sitting around doing nothing, an hour (or more) flies by like *snap* that. But laying down using the leg pump for an hour feels like eternity! I did buy my own tape measure for my leg, and am going to measure once a week. I'm kind of excited about getting to see the numbers. Dealing with LE is a sprint. Slow and steady is the only way, there is no quick fix. Last year I got "bored" with it and stopped doing all my home treatment, that's why I'm back at square one this summer. It's going to take all my willpower to not give up. |
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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