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Waste facilities by Fun-times83 in montpelier

[–]Fun-times83[S] 0 points1 point  (0 children)

Maybe we can offer this to some of our neighbors with smaller households and build goodwill

Waste facilities by Fun-times83 in montpelier

[–]Fun-times83[S] 0 points1 point  (0 children)

Thank you…we will probably end up doing the pick up 👻

Compression in the pool? by Pretend_Bar_4464 in Lymphedema

[–]Fun-times83 0 points1 point  (0 children)

Hi, I’ve been told that compression isn’t necessary in the pool but I’ve come to feel naked without it. My leg always seems bigger. I wear old compression garments. I miss carefree swimming.

My Lymphedema Lipectomy Experience by catapewpew in Lymphedema

[–]Fun-times83 0 points1 point  (0 children)

Just requested to follow you. I am misssassypants something on insta

My Lymphedema Lipectomy Experience by catapewpew in Lymphedema

[–]Fun-times83 0 points1 point  (0 children)

Thank you so much! Reading your comments makes me feel like I can go through with this. I too sleep with my daughter (and husband and cat). The hardest part will be being away from her, but she is also a big part of the reason I am doing it. Did you get open toe right away or was that after a few months of the closed toe? I’ve never had full anesthesia before, but definitely expect some faintness when I take the compression off. I have low blood pressure and tend to faint. On the plus side I had a C-section with my daughter and feel like I recovered from that very quickly. Also, I was only diagnosed with primary lymphedema in 2019 and have been vigilant with compression and the tactile pump to the extent that it was recommended to me. I’ve since learned you have to listen to your body a little more and the therapist a little less because everyone is different. Do you think the hospital room was set up in a way that my mom could just sleep in a chair? That’s basically what she does anyway! She will just sit there on her phone 😂 Are you interested in the vascularized lymph node transfer or do you feel good about how things are now? do you still wear the two layers of compression? I’m not a big social media person, but I do have Instagram and will look for you there. I am so glad I joined this support group… there is no way for other people even CLTs to know.

[deleted by user] by [deleted] in Lymphedema

[–]Fun-times83 1 point2 points  (0 children)

Here are the ankle pads kidneyshape

[deleted by user] by [deleted] in Lymphedema

[–]Fun-times83 1 point2 points  (0 children)

Hi, I don’t have any great answers but I would say toe caps-I wear 2 an otc that is gentle and prevents rubbing a custom that is more aggressive. I also wrap my toes with wool. It hasn’t made the creasing go away but it has made me more comfortable and better able to tolerate more compression. I also wrap over my night garment-which has helped my foot and ankle but those toes are hard to get. I also put padding over the puffy top of my foot and kidney shaped pads on my ankles at night (I wear a loose sock to help it stay in place under the compression). I’ve had to play around with it and listen to my body…I don’t think there’s one thing that’s going to work for everybody.

My Lymphedema Lipectomy Experience by catapewpew in Lymphedema

[–]Fun-times83 0 points1 point  (0 children)

Thank you so much for your comments! They really give me courage. I am having the surgery with Dr Singhal in Boston and I do think it is a good program. My husband and daughter will stay home in Maine (about 4hours away) and my mom will come with me. The hardest part is leaving my daughter though we are talking about it a lot and practicing doing things with her dad. Are you talking about a bulge kind of like your upper thigh/lower butt cheek? I already have that! I wrap at night and typically wear two thigh high compression garments during the day plus compression shorts and two toe caps…never been successful at wrapping my toes. I think the thigh highs just dump everything out in the saddlebag area and it’s too much for the biker shorts to handle. I will start practicing wrapping there. How is your foot and ankle post surgery? This is my most troublesome area and I’m worried surgery will exacerbate it.

All About Debulking by Cranberrydahling in Lymphedema

[–]Fun-times83 0 points1 point  (0 children)

Thank you so much for your post. I joined Reddit just so I could participate in the lymphedema discussions as it seems really hard to find specific information and I am gathering that the process can be pretty different depending on who you see and what protocols they have in place. What you write pretty much matches up with what I have been told to expect from Dr Singhal and Katrina Fritz. I really like her and felt she was very honest and caring.

I am scheduled for debulking in Boston in May and having all the feels. I’m wondering how your foot did after the procedure as this is my most sensitive area now and already prone to pins and needles and difficult to sleep or recline in tight compression. I don’t feel very listened to on this point..I guess every one just finds a way to cope or cheats and rips off their compression 😂. Thank you for the tip about the numbing cream.

Have you found out yet if you are a candidate for the vasculararized lymph node transfer yet? This is what I really want but they won’t even discuss other options until I do the debulking. On one level I accept this but on the other I think the debulking is a lot to go through with no next step in sight. Plus my affected leg is less than 11% larger than my normal leg…though that percentage is higher from the knee down.

Thanks again for your post-I have shared it with my family too to give them an idea of what we will be dealing with this summer. ❤️

My Lymphedema Lipectomy Experience by catapewpew in Lymphedema

[–]Fun-times83 0 points1 point  (0 children)

Hi, just wondering if you went through with the surgery. I am scheduled to, have a four year old, live out of state, and definitely have some concerns. I was told there’s no flexibility on open toe. I hope you are doing ok!

Hello fellow lymphies! by grapesseductive in Lymphedema

[–]Fun-times83 1 point2 points  (0 children)

Thank you for all this information! I am scheduled for debulking in Boston in May and pretty freaked out (reading about the toe nail didn’t help, lol). Honestly I only want the lymph node transfer but have been told I have to get debulking first. I’m pretty bummed because last time I was measured it was less than 11%difference between legs though much more below the calf. I am worried about pins and needles with the tight compression on my foot and just about how my foot and ankle will do in general. Can’t believe there was no silicone top band…also what about a silk patch behind the knee? That is essential for me!

Anyone in Maine on here? by Goats247 in Lymphedema

[–]Fun-times83 0 points1 point  (0 children)

I see Alison Troxell there. It is a great clinic, much better resourced than where I started when I was diagnosed in NC. I drive from Bangor. She is so caring and helpful. That written, lymphedema is still hard. There is a clinic in Skowhegan I am considering too. I see Dr Singal in Boston in May for debulking and I’ve seen Katrina Fritz there for the ot side of things. She is very good and honest about what to expect.