Something I miss thanks to LE. I miss cute shoes! I was always a sucker for chunky boots or low top converse tennis shoes. But now with my LE, I have to always wear comfortable shoes. Not to mention that trying to find shoes that actually fit my large and swollen foot and ankle is next to impossible.
Which makes shoe shopping annoying, and not something I ever want to do.
I know a lot of LE warriors probably, like me, haven't had a pair of snow boots in years. I haven't been able to find a pair that I like that actually fit on my foot.
Flip flops are my favorite, but of course you can't wear a compression sock with them, and your swollen odd foot is out there for all to stare at, and they do. Trust me.
(BTW I don't care if they stare now. All I want to be is comfortable. If you are staring at my foot, you are the one with issues, lol.)
When I used to worry about blisters if the heel was too stiff and rubbed when I walked, now I worry about my skin breaking. Ugh. Yeah, it's miserable.
What got me thinking this was an ad on FB for super cute shoes. And all I could think about was missing shoes like that, then how the edges looked stiff (sharp) and how I'd worry they would cut into my balloon like foot...

It's harder than it looks to make managing your Lymphie Life a habit.
Lounging for an hour, unable to move with the LE pump on is hard to get used to.
I did so well over the holidays. I used the pump and wraps. I even bought compression socks holiday themed, to wear at Christmas. From Thanksgiving to Christmas I wore the sock on my left leg (has LE but not too bad), and wore my velcro wrap on the right leg. It was a great idea on my part! Since I sit when I go visiting on holidays, the wrap helped my leg not be bloated and swollen when I got home. It actually felt great!
But then I got lazy again. I only did the pump and wrap randomly from New Years until last week. I only gained around 2 pounds per the scale, but I felt bad about not taking care of my LE.
So this week I began again. I just really hate that my day feels so wasted. I get up late (because the dog keeps me up late), eat breakfast, drink coffee, wake up, do the pump (1 hour), get changed, put on the velcro wrap, and by then it's usually at LEAST 3pm if not 4! I know I should get up earlier. I was going to start trying to get up at 9, but last night the dog had a stomach ache  and had me up until 4:30am!
Do you all lay down when you use your pump? I recline and am practically laying down, not able to use my computer in that position. I guess getting up earlier and doing the pump earlier is the answer. Can someone tell my dog that plan?
Anyway, after using the pump and wearing the velcro, my leg feels so good. I do think wearing it even when I go out is a good option.
I am not sure if my leg is getting any smaller, but at least it isn't getting bigger. And I'm still not sure if the weight I am losing is fluid from my leg or body. But I'm thinking it's both.
I also haven't drastically cut back on my salt intake and it isn't affecting my leg at all like it used to. Maybe using the pump helps that not be an issue? All these years of suffering everytime I looked at a cracker or pretzel, and all I needed was someone to dx me with LE and give me the LE pump to use!
Can I use the velcro wraps during the day and the pump in the evening when I'm sitting watching tv? I don't know. I thought the pump "activated" the lymph fluid, then putting on the velcro wraps helped move the fluid. Doing it backwards, would it work the same?

Here I am, 3 series of knee injections later. Yes, I survived the second without issue (I may have taken a dr prescribed xanax beforehand to keep the anxiety at bay-and it helped). And the third was so easy I barely felt it. I was feeling pretty invincible at that point, until I did some research and noticed that typically folks get the series of injections EVERY 6 months! Doc said it can take 6-8 weeks to feel any relief, so I'm cautiously optimistic and waiting.
I also finished my stint at the LE therapist doing the massage once a week. My numbers went down on both legs! That means me doing the pump and velcro wraps daily is working!
Now I am trying to turn the daily "I better do my pump today" attitude into a habit. Something that I don't even have to think about and something that really isn't a "choice". That is a work in progress...
I already skipped two days this weekend - so it is really a work in progress... yikes! But while skipping those two days I had to run out to do errands. It was rainy and cold, so I couldn't wear my normal flip flops (which are great and comfy with my swollen LE leg and foot). I wore my socks that used to be comfortable (and these were the socks I got AFTER my normal socks that come up my leg no longer fit) and they were snug on my leg, leaving that line when I took them off. That's when I made the decision. We are heading into November here in Pittsburgh, and that means cold weather, and soon snow. That means socks and tennis shoes or boots. I have already been searching for winter boots (that is another story-I'll get to that in a minute, but back to the socks.) There will be holiday outings I'm sure, family gatherings, shopping trips, and or course weekly errands, and I will need socks, but want to keep my legs from swelling. So I bought compressions socks!!
Yes, I have the pink and white ones we already discussed. But it's close to Christmas! So I bought some Christmas ones! Fun, right? I actually can't wait to wear them.
I also bought a pair of plain pink ones. I want gray ones too, but in due time.
I guess that will be my new normal, at least for now. Compression socks instead of my normal ankle socks.
Oh, I almost forgot about the boots. Okay. Since my leg swelling has gotten worse over the years before knowing what the dx was, I have had difficulty finding winter boots. Years ago (like 15 maybe) I bought a pair at Walmart (at the store, imagine that) they felt like tennis shoes and went with anything I was wearing, I could wear them in the snow and then all day at work. I LOVED them. They lasted YEARS (maybe 12 years or so?). When they finally caved in (literally, the heels) I searched for a new pair and of course Walmart no longer had them. No one did. I searched online and found a pair that looked the same, but they weren't as comfy, and the tongue annoyingly moved, and my swollen LE leg looked RIDICULOUS in them. Well, I wore them when we had a sewer backup. They were literally the ONLY pair of shoes I had that weren't going to let the water in. Obviously they were ruined.
Finding new ones was now even harder. I used to be a size 9. Then the leg swelling started (that was 20 years ago). I have to buy a size 11.5 extra extra wide now, and typically womens shoes are too small.
I couldn't find a single pair of boots last year! I ordered one, they were SO CUTE! They were pink and tall, and I loved them, but they were too small (#sadface ) They reminded me of the tall boots the girls wear on Chicago PD. Finding the size I needed and the width I needed is impossible. Everything was out of stock! And I used to get all my shoes at Skechers, but even they no longer cater to extra wide feet, and the one they "say" they had in my size, they never had the size I needed in stock. I don't believe they ever did. I think it was just listed as a tease. So I had no boots last year. I dealt with my tennis shoes, and avoided too snowy or slushy days.
This year I started shopping in October (online because no one has the size I need in stores) and still found it difficult to find a 11.5 extra wide width! You really have no idea the aggravation I have finding shoes. That's why I wear flip flops most of the year. If it isn't snowing, and I'm just taking the dog out, I am in flip flops or Crocs. Well, if I'm wearing the compression socks, I can' t wear flip flops! So boots were a must.
My feet hurt so much I need comfy boots, not hard stiff, heavy ones. The one paid I found and ordered are stiff. Cute, but stiff. Again #sadface .
It didn't dawn on me until yesterday, I should be looking at mens boots. They are wider then womens.
I found a pair, an extra extra wide - why is it so hard to find them for women but you can find them for men? Someone needs to change that! I feel like that is a huge stigma with LE. Women just can't find shoes that fit. No one wants to only be able to wear slippers.
I won't know if these mens boots are what I am looking for until they get here. That is the annoying part! I can't go in a store and try them on. I have to order them, pay for them, and then try them on. If they don't fit, it's to the post office to send them back. It's annoying!
I guess I'll keep you informed of the boot dilemma. Will I or won't I have winter boots this year? That is the question! (but I will have compression socks at least)

When I decided I needed to move more while wearing the velcro compression wraps, I noticed how badly my knees hurt. I already knew my left knee was almost all bone on bone. I asked the doctor to look into my right knee as well - it is also almost all bone on bone. I feel like I am 90 years old trying to walk up stairs. Or down for that matter. And kneeling just never happens.
But in order to get more active to help my LE, I needed to get my knees healthy. So I decided to get the gel injections. Euflexxa.
I don't like needles. As it is, I self inject Emgality once a month with an auto injector and I am anxious the entire day before I do it EVERY month. I hate it, and the auto injector hurts.
But, I was trying to be strong. I had looked up the needle before making my decision, and saw they weren't that big. I took the plunge and made the appointments.
Today was the first appointment. I was scared. I thought "what am I doing???" as I looked at the stuff all set out on the counter.
Yes, I was really worked up.
The right knee was a breeze. No pain at all, just a pressure that was uncomfortable but bearable.
The left knee hurt the second the needle pinched the skin! Mother of all things did it hurt!!!
I got lightheaded as she was injecting the gel. When she was done, I didn't feel so good. I was starting to sweat. I was nauseous. I apparently was flushed because she asked it I was okay (and many doctors ask this, dentists, chiropractors, etc, and everytime I think why are you asking? I'm good, just keep doing what you're doing.) This time I really wasn't okay and I knew it. I think she knew it. I said "I don't feel well"
She had me lay right down and she put my legs up, and even gave me a cook rag for my head. My eyes started to water. I don't think I was crying, but I might have been. She told me, this is a Fight or Flight response. You are so tense or worked up about something, then you either realize it's not so bad, or it's over, then your body relaxes quickly, and your BP drops.
It's a common occurrence.
Once I got up and moving I sat in the car for a moment, and the left one still ached/pinched not sure the correct word to explain it. I started to cry. I admit I can be a big baby, but not like this. I wasn't crying from the pain. I think it was the adrenaline wearing off causing me to cry hysterically. I cried the whole way home. Yes, I should've pulled over.
I had planned to stop and get a coffee on the way home as a treat for going through with the shots, but I had no interest in stopping anywhere. I just wanted to get home and sit down.
Doctor wanted me to move around after the shots, but the left knee freaking hurts still! And both feel stiff and uncomfortable. This sucks, lol... but I had no idea what to expect. It just feels funky. I'm walking funny because of how it feels. Two more days of injections-ugh... But I do love my doctor and I trust her. I mean, she is the doctor for our city's NHL team... and I'm no athlete, lol.