I decided I am able to be vulnerable about this. I am human and it's a part of life.
In the beginning, I figured, "Hey- better me than someone else". I assumed any maturity I have accummulated over the years would come in valuable in this situation. I started out with hope and faith that this was a temporary situation and would be healed in no time. It's quite difficult to stay positive. I need to remember to count my blessings. No one is hurting and no one is dying, but it's still hard.
I think back to year ago from right now. Why did I take my ankles for granted? Sounds hilarious and silly, but it crosses my mind. I never thought I would envy other women's ankles. Again, silly. March hit and my reality changed. Worrying about something you never thought would be a problem.
Swelling has gone up and down. I have good days, and I have bad days. I have days where I want to cry about it, and days I think I have only been made stronger. I am blessed it's as minor as it is.
The hard part is being a 23-year-old and wishing I could flaunt my ankles in some heels or some flats. Only on my good days I can wear certain boots. Wrapping and compression socks become old. My husband gently reminds me at night, "You need to wrap your foot". I can only respond with, "but I just want to be normal..."
I thought the swelling would get a lot worse while being pregnant. Some days I have no definition in my ankle, and some days I almost look normal. Recently I have had some swelling in my other ankle. My attempt at good humor is a response of, "At least they sort of match now".
I fight for my son in prayer- I pray it wouldn't be hereditary for him. I hope he never has to deal with it. I would gladly keep it just so he wouldn't have to deal with it in his future.
All I can say is I am grateful for being pregnant in the winter. Long pants and big boots. I am thankful it is nowhere near to what it could be. I am still waiting on my miracle- it will come in one form or another. Faith like a mustard seed right?
I regularly wonder- is there someone out there just like me? A twenty-something with lymphedema? If there is- I would love to meet you.
{S}
Hi I am 26 and I also have lymphedema. I have it in my Right leg and foot. I too feel alot like you about "just wanting to be normal" But I have become a stronger person with this. I am trying to conceive, and ran into your post about pregnancy and lymphedema. I had no signs of lymphedema until I was 4 months pregnant for my daughter in 2006. I was told I wouldnt be able to have kids, and so I look at it as having to give to get. I live in Louisiana which makes it really uncomfortable in June-August. Mainly because I am too embarrassed to wear shorts. But my husband says the same things at night, you need to wrap, and I am like "its just so uncomfortable!!"
ReplyDeleteMaxi dresses and skirts are my friend when it is hot out! I am also thankful for the type of sandals that are popular- thick at the ankles! It is so uncomfortable. I get so dry below my toes from my compression socks that I dread wearing them! Winter is more exciting to me now!
DeleteI am 22 and was born with Lymphedemea. I am still only wear jeans (to hide my compression stockings) and when I wear heals it's only after a night of sleeping in stockings and wrapping bandages over my feet up to my knees. I am 19 weeks pregnant right now and just got put on bed rest, my whole life I've just thought it was "no big deal" I just wear pants in every weather condition and don't swim in public, but now being told by the doctor that it's not "no big deal" is freaking me out.
ReplyDeleteI haven't put much thought that my daughter would be getting this, but right now I am really praying hard that she is protected from the bullying and teasing that I experienced as a young child (when my mother would dress me in dresses and shorts).
As far as the husband goes, mine is a nurse and brings me home new stockings from work often so I am blessed in that regard that he does know what to say and how to massage my legs to get the fluid moving but I am so self conscious and insecure that I rarely let him touch my legs and feet. "I just want to be normal" is a common statement I make!
YOU ARE NOT ALONE!
Thank you so much for sharing! I am late on responding to this, how are you doing now after you have had your daughter?
DeleteI have been struggling with lymphedema in my lower leg(s) for about 10 years. I read your diagnosis story and had a similar experience (blood clot scare, stumped doctors) when I started to experience symptoms - I was 20. Because no one knew what it was and I wasn't in pain, it went undiagnosed (and unfortunately untreated) for about 6 years. I eventually self-diagnosed when it started to worsen thanks to the internet (and also found those scary pictures!) and found a doctor to confirm and a therapist to treat. Now I wear compression stockings at all times (or bandages when I travel). My husband and I are considering starting a family and I want to be smart (and realistic) about managing my lymphedema through pregnancy. I know the swelling will get worse, but I'm not sure what else "extra" I can do to manage it. Do you have any tips? Have you noted any lasting negative effects from the pregnancy?
ReplyDeleteHi Shannon-
DeleteWhy on earth does this happen! For pregnancy, I would recommend planning around having your later months in the summer time. I have noticed that mine is triggered by stress and heat. Be sure to put your legs up as often as possible, and keep them cool (unless you have noticed a differ trigger for you). My lymphedema has gotten better as my weight has gone down after having my son. It still flares up from heat. Right now I am trying to get back to the weight I was at before it showed it's ugly head. I will never forget my doctor telling me that sometimes it just disappears and may never come back. That is my goal- I am on a quest to naturally remove this from me. Weight just seems to be a key factor for me. Don't let it hinder you from starting a family! It will get worse during pregnancy- but you will swell from pregnancy anyways!
Let's keep in touch! I would like to hear how you are doing and offer any encouragement I have. It's a major bummer- but we can't let it control us!
-Sara
I am 22 and I too suffer from lymphedema in my left leg (and it looks like sometimes my right as well). My lymphedema began after a dance injury when I was 14. My question for all of you is have you noticed it get worse with time or have you managed to at least maintain it? To be honest I've kind of been in denial about it and quit treatment after feeling like it wasn't going anywhere for me but I'm now realizing I should stick to it.
ReplyDeleteI'm reading these posts and I totally empathize with the teasing and rude remarks. Also, would love everyone's input on how you disguise your legs. I do my best to wear things that hide it but I find that people still notice it sometimes.
- Valerie
I have recently discovered an amazing maintenance tool for keep my lymphedema down! Lemongrass oil! I use Young Living Lemongrass and do 4 drops in an empty capsule 1-2 times a day. The difference is remarkable! I should write about it. It;s extremely affordable. Less than $15 I think. If you're interested in getting some you can go to https://www.youngliving.com/signup/ and you can sign up as a member. Click referred with this number : 1392711. If you try it, I want to hear about it. It's made such an impact on me. I actually cried when I read the testimonial on someone that had lymphedema and in 3 days symptoms were lessened. Keep in touch!!
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