The following was submitted by Mary Kastelberg (@livelovelymphie):
What has your experience been with lymphedema?
I have primary lymphedema in my right leg. I started to see an increase in swelling in my thigh when I was twelve years old, and after six months of doctors appointments, MRIs, and CT scans, I was finally diagnosed with lymphedema. Around 4 months after my diagnosis the lymphedema spread to the rest of my leg, and continued to increase in size until it was 26% larger and growing. I then sought surgery.
How does lymphedema impact your everyday life/routine? How does it impact your career or activities?
Lymphedema used to impact my everyday life quite a bit, with using a flexitouch every day for an hour to an hour and a half, bandaging my leg every night, and wearing custom garments during the day. The bandages would rub the side of my foot raw so that I couldn’t sleep because of the pain. After surgery, I wear my custom flat knit compression every day, but no longer do anything at night besides elevating. I still use a flexitouch and cupping machine occasionally, during times of increased swelling, due to the ups and downs of life. Right now, I am a senior in college, and I work as a manager of a restaurant. I have to keep my leg in mind with serving, as I am on my feet all the time, so I try and give myself some “horizontal” time after work to ease any swelling caused by standing for hours at end. As far as my activities, I always listen to my body and my leg, but I work out every day and enjoy seeing how capable I am despite my condition.
How do you feel you fit in with the lymphedema community?
It took me awhile to really see how vast and amazing the lymphedema community was. This past October (2019) I had the opportunity to speak at the National Lymphedema Network Conference: A Cerebral Experience. It was by far the most incredible experience I have ever had. So many people care about lymphedema, it brought tears to my eyes and so much hope in my heart.
Have you ever met anyone else with lymphedema?
I have met several people with lymphedema through support groups and through shadowing at a lymphedema clinic. I love meeting other people with lymphedema, and continue to look forward to meeting even more as my journey continues. It is especially nice meeting younger people, as I feel like our stories really connect and we can continuously learn from each other.
How does lymphedema affect your close friends/family members/relationships, if at all?
I think that lymphedema affects my family members in the sense that they have an appreciation for health, as well as an understanding about how important the lymphatic system truly is. They worry about me, naturally, but I think they really learned so much about caring for someone who has a chronic condition and to be grateful for everything they have. I don’t know how much my lymphedema affects my close friends and other relationships, most of the time people actually forget that I have lymphedema, and some people don’t notice it until I bring it up in conversation. Similarly to my family, I think it reminds everyone to be a little less judgmental and more sympathetic, as you never know what other people have been through.
What kind of treatment do you undergo for your condition?
I use Elvarex Custom Flat Knit thigh high stockings. I have had six procedures with Dr. Jay Granzow. These included Suction Assisted Protein Lipectomy twice, Lymphatico-venous Anastomosis three times, and a Lymph Node Transfer.
What do you wish others knew about your condition?
I wish that other people knew that while we might put on a strong confident face, there are hard days regardless. Lymphedema has been one of my biggest blessings in life and I am truly grateful to have it now, however there are still hurdles and worries that you face constantly. I wish other people could see that every bit of confidence we may seem to have we have fought for, and that if we can do it, so can they.
I wish other people could see that every bit of confidence we may seem to have we have fought for, and that if we can do it, so can they.– Mary Kastelberg
How often do you discuss your condition with those outside of the lymphedema community, if at all?
Almost every time I meet someone where you can see my stocking I discuss lymphedema. At first upon being diagnosed I was mortified if someone asked me what was wrong. Now, I use it as an opportunity to teach others. People still ask me questions all the time and I am super open and happy to give them any information I have that they would like to know. Knowledge and understanding of others is crucial to change.
Knowledge and understanding of others is crucial to change.– Mary Kastelberg
What has your experience been with the health care system?
The health care system currently is less than ideal. All of my surgeries were refused coverage, claiming that the surgeries were either cosmetic or investigative. As a group, we are collectively disrespected by the health care system and not taken seriously for what we go through and the consequences that can ensue if our conditions are left untreated.
As a group, we are collectively disrespected by the health care system and not taken seriously for what we go through and the consequences that can ensue if our conditions are left untreated.– Mary Kastelberg
I truly hope this changes in the next few years to give us the help we deserve and need.
What would you like to see for lymphedema within the next few years?
I would love to see all of the above for lymphedema in the next few years. I think that we are starting to see this happen already. As for a cure, it would be incredible, but first I would love for everyone who has it to start speaking up and speaking out. There is no need to hide behind long skirts and baggy clothes. We are all beautiful and all worthy. The more we speak up, the more we are heard, and the more likely there will be an increase in research, funding, etc. There are 2.5 million of us simply in the United States, and right now we only have a small voice begging for change.
Are you involved with the lymphedema community (in terms of fundraising, volunteering, attending events, etc.)?
I am involved in the lymphedema community through social media and some events so far. As I previously mentioned, I am still in college which has inhibited me from going to as many events as I would like. However, the conference in October created such excitement for me that I hope to attend more in the upcoming years. I am involved with Camp Watch Me, and I also have a Facebook and Instagram page: LiveLoveLymphie, where I am more than happy to answer any questions or just be there to listen for my fellow lymphies.
How do you feel about the lymphedema community? What are its areas of strength? Are there any areas that need improvement?
I love the lymphedema community. I was amazed after years of feeling alone when I finally got involved. The information that is shared throughout Facebook pages and social media, and encouragement for each other is incredible. I think we should take this momentum and run for it, and I would love to see more opportunities for us to actually meet face to face and push for policy change and societal acceptance.
I think we should take this momentum and run for it, and I would love to see more opportunities for us to actually meet face to face and push for policy change and societal acceptance.– Mary Kastelberg
I also think other countries could really use the resources and information we have here in the United States, and would love for some groups to be created to form international bonds.
What needs are underserved in the lymphedema community? What kind of people do you feel are underrepresented or under appreciated? Have you personally ever felt misunderstood or isolated within the community?
There are so many needs in the lymphedema community. I see posts all the time of people who have been incorrectly bandaged and do not know how to treat it, or people who have skin integrity issues and are scared without resources. We need to educate people on what they have, and how to treat it by themselves in case they are not able to receive proper treatment elsewear. I think that within the lymphedema community, we should pay special attention to everyone, but particularly those with genital lymphedema or men. These people are in the minority, as many of us have lymphedema solely in limbs. I would imagine it to be especially hard for these people to talk about their specific issues, but they should receive just as much love and support as we all would love to have. I have not felt misunderstood or isolated within the lymphedema community much at all personally. From doctors, definitely. From fellow patients I feel as if my statements have always been well received and appreciated thus far.