Lymph Girl Stories
Jackie's Story
Sorry I've been on hiatus from posting these stories. I had a lot going on giving birth to my daughter this past January. I'm gonna start posting these again once per month - I promise! On that note, Jackie, I want to let you know that me being pregnant didn't cause my legs to swell any more than what they had. Only in my 3rd trimester did I see a little bit of a difference so I just made sure I had my legs up a lot of the time. Also, I didn't wear my compression garments for most of the pregnancy. I just couldn't get them on! I hope that eases some of your concern in that area from one Lymph Girl to another.
Here is Jackie's story:
Lymph Girl: How old are you?
Jackie: 36
Lymph Girl: What state and/or country do you live in?
Jackie: Maryland, USA
Lymph Girl: Please tell us a little about yourself.
Jackie: I have been married about 2 1/2 years and we have a dog named Molly. I just graduated with my PhD in Medical Family Therapy and currently work on a research project in pediatric palliative care. I like to hang out with my spouse and dog, go to coffee shops, watch movies, go for walks, travel to new cities, try new restaurants, and lounge by lakes and oceans.
Lymph Girl: What type of lymphedema do you have?
Jackie: Primary Lymphedema
Lymph Girl: What stage of lymphedema are you in?
Jackie: Stage 1 - an early accumulation of fluid that is relatively high in protein content. There is visible swelling with protein-rich lymph. This swelling can be temporarily reduced by elevation of the limb; however, the swelling soon returns when the limb is returned to a normal position. The swollen tissues are soft and pitting edema is present.
Lymph Girl: Where does lymphedema affect you on your body?
Jackie: It is primarily in my right foot and ankle, most noticeably up to my mid-calf. My entire right leg is slightly larger than my left. In recent years, my left foot and ankle have shown an increase in swelling.
Lymph Girl: Do you know how you got lymphedema?
Jackie: I was born with it. It is in my birth line as my mom, grandma, and great-grandma all have a version of it, though their legs mostly swell with fairly normal ankle size and it's my ankle that is the most swollen. So strange!
Lymph Girl: At what age did the lymphedema start showing it's effects?
Jackie: I was 17 and had flown down to LA to go to Disneyland with some friends. My right ankle was swollen that night and we were trying to figure out if I was allergic to something. The swelling came and went for the next several months until finally my right ankle was swelling every day.
Lymph Girl: Before being diagnosed with lymphedema, what were doctors telling you in regards to your symptoms?
Jackie: My family doesn't go to doctors very much so I didn't actually see a doctor for it until I was around 20 years old. I went to a variety of doctors before finally being told by a vascular surgeon that it was Lymphedema. My diagnosis phase was difficult because it took several months to get an answer and the doctors were not very compassionate or helpful in helping me figure out what was wrong with my foot. The vascular surgeon prescribed me compression stockings, but they were not custom fit so didn't fit me properly and made my toes and knees swell a TON so I stopped wearing them until I was around 25 years old and was properly diagnosed and fitted for stockings.
Lymph Girl: How long did it take for doctors to diagnose you with having lymphedema?
Jackie: 2 years
Lymph Girl: Were any special tests done to help diagnose lymphedema? If yes, what tests?
Jackie: I had fluid injected between my toes and then an MRI type of scan to see the lymph fluid flow through my legs. It basically just pooled around my right ankle. I later found out that is a bad test for people w/ lymphedema as we have a hard time getting rid of that radioactive fluid. But, at least it was a scientific picture of what was going on.
Lymph Girl: Have you been through lymphedema treatment/therapy? If yes, how long was treatment?
Jackie: Yes, at age 25 I had a bout of cellulitis which really scared me! Unfortunately, the primary care doctor I saw told me I would just have to "deal with" my lymphedema. I knew there should be more I could do so I made an appointment with a vascular surgeon to get some answers. He was surprised to see me and said he didn't really work with people like me, but he knew I had lymphedema and he gave me a referral to a lymphedema clinic that was just outside of the city. They recommended I get wrapping done before being fitted for stockings. I wrapped both legs for about 6 weeks and was then fitted with compression garments.
Lymph Girl: What did they do during your treatment?
Jackie: Manual lymph drainage and wrapping. I stayed wrapped all week until I went back to therapy. I remember being amazed that I could see the tendons and bones in my foot again - it had been so long since I'd seen them!! And my toes were so skinny! :)
Lymph Girl: Do you wear compression garments? If yes, what kind and how much is the compression?
Jackie: Yes, I wear knee highs/closed toe 40-55mmHg, waist-highs (20-30mmHG) with a toe-cap, and knee-high elvarex, open toe with toe caps.
Lymph Girl: Does your insurance cover your treatment and/or compression garments?
Jackie: Insurance does not cover a maintenance treatment program and they cover 1-2 pairs of compression garments per year. The really lame thing about my insurance is that if I get an open toe knee high and I need a toe-cap to go with it, the insurance will only cover the knee-highs or the toe-caps - not both! So ridiculous!
Lymph Girl: Do you do anything special to help with the swelling?
Jackie: Probably like most Lymphies, I put my feet up a lot, sit down whenever possible, and try to get a good night's sleep every night to "re-set" my feet and legs. I will massage my legs if they start to feel painful or if I've had a really long day of standing or sitting too much.
Lymph Girl: Does having lymphedema cause you pain?
Jackie: Yes, if I've had a long day of sitting or standing my legs will start to ache. It doesn't last long as I usually sit or lay down and it's gone in the morning.
Lymph Girl: Have you ever had a cellulitis infection? If yes, what happened and do you know how you got it?
Jackie: Yes. I started to see red bumps on my right ankle and was treated with Keflex. It did not get out of hand and I was lucky to have it cleared up so easily. I haven't had cellulitis since and it's been about 10 years. I don't know how I got it...
Lymph Girl: Do you do any exercises to help manage lymphedema? If yes, what type of exercise and how many times per week do you do them?
Jackie: I walk and do some swimming. I have never been a runner and now probably wouldn't ever be because of my lymphedema. I do love to row crew and would love to get into that again, but it is a pretty expensive sport. But it's great for lymphedema... really gets the fluid moving.
Lymph Girl: How has lymphedema affected your life?
Jackie: Of course! Honestly, I can't even think of all the ways it has affected me because I'm so used to it having lived with it for 19 years now! It definitely affects my fashion as I can now only wear "sensible" shoes. I love wearing my tights with knee high boots in the fall because I feel so normal. In the summer, it's really hard to be so warm, wearing closed toed shoes, and pants and having everyone ask me "Aren't you hot?" But I've gotten used to that overall. It also affects me in that I don't get up and lounge around without my socks for very long in the morning. I hope right in the shower so that I can get my socks on. Kind of funny, but I think before I had lymphedema I would take longer to take a shower in the mornings, but now I don't want to have any extra swelling so I get them on as quickly as possible. I also put my feet up a lot which I sometimes wonder if people might think I'm rude or lazy with how often I'm looking for a footrest. :)
Lymph Girl: Has anyone ever made you feel embarrassed? If yes, how so?
Jackie: I tried to wear flesh-colored knee highs under a pair of capris when I vacationed in Hawaii a couple years ago and so many people looked at my legs that it was really hard for me to just relax and enjoy myself. I want to try and do that again, but I was so discouraged by people's staring that I'm not sure I can handle it. Hearing everyone's stories sure does help, though! I might try next summer. Other than that, people say things that they don't mean, like, "Is your ankle swollen?" "Why don't you ever wear skirts?" "You sure like comfortable shoes, don't you ever wear heels?" Stuff like that. Nothing too mean.
Lymph Girl: How have you learned to cope with looking different?
Jackie: This is probably the part I have the most trouble with... I think my days of being a bridesmaid are over so that's helpful as I had so much trouble wearing short skirts and finding shoes that would "work" with what the bride had in mind! So I can control my own fashion choices, but I definitely try to always look as normal as possible and not show my socks in a way that would be noticed. Something to work on, for sure!
Lymph Girl: Does anyone else in your family have lymphedema? Or any friends?
Lymph Girl: Has lymphedema stopped you from accomplishing anything?
Jackie: Not that I can think of, although I am a little worried about getting pregnant and what that will do to my legs. I get nervous it will cause increased swelling that won't go away after giving birth.
Lymph Girl: Have you accomplished something that was thought to be impossible because of having lymphedema?
Jackie: Not that I know of...
Lymph Girl: Do you wear clothes that show your affected limb(s)? If yes, how do you feel when you go into public? If no, why?
Jackie: I've covered this already, but I don't wear a lot of outfits that would show I have an affected limb. I think the funniest thing is when I am wearing my typical knee high compression socks (they're black) and someone will say, "I love your socks! Where'd you get them?" I laugh and want to say, "Oh these? Yeah, they're $100 per pair. Want the website?" :)
Lymph Girl: Do you have a hard time buying clothes/shoes that fit?
Jackie: My swelling is mild so I find I can fit into shoes that have some give or are wide width. Danskos work for me, but they have to be the Danskos that have elastic as part of the shoe so they'll give me a little extra room.
Lymph Girl: Do you have any advice for other people living with lymphedema who may be struggling with coping?
Jackie: It takes time, but you will figure your way through it. Recognize that you have lymphedema and it has placed some limits on your life, but don't dwell on what you don't have. I also always hate it when I tell someone I have lymphedema and they say something like, "Well, it could be worse. You could not have legs!" I know they are trying to help, but it makes me feel like I shouldn't be allowed to be sad that my legs swell. People will say right and wrong things... Remember the right things they say and move on!
Thank you Jackie for filling out the questionnaire and sharing your story. I too don't like when people tell me "it could be worse…" Well, it's worse for me right now! Sometimes you just gotta shake your head and walk away from the conversation. I try to help people understand what I go through, but it doesn't matter, it's always the majority of those people that say "it could be worse."
Thank you all for reading. Lymph Girl Stories is open to anyone who has lymphedema. Don't be shy, share your story today! Just go to the Questionnaire section of this blog, fill out the questions, and submit. Let's help each other understand that we are not alone.
