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.
Lori told me that my leg has a definite different shape to her. It's not extreme, but that is Lymphedema. She said my leg arcs inward mid calf and that didn't do that before (it is shrinking!) And when I started, I was getting the skin fold at my ankle - that is GONE! It's working. Slow and steady, just like exercise or a diet. One workout at the gym, or one salad for lunch isn't going to change your weight like magic. It takes months of workouts and eating right to see a difference. Same with LE management. I use the LE pump daily - well, I try. Some days I just don't get to do it. I put the velcro compression wraps on after every treatment.
The hard work is paying off. The consistency is paying off. The time I'm putting in for my health is paying off.
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.
I 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.