I am not a person who likes to make absolute statements. I have always believed that what works for one person with lymphedema will not always work with someone else with lymphedema. Every person is unique.
BUT I am now going to say that I now believe that compression garments or wraps is the key to living with lymphedema. I have primary lymphedema and I have lived all of my life with it (well officially the lymphedema didn’t show until puberty) and I have had a lot of lymphedema pain for the last 25 years. In the last few months I was able to have treatment where I was wrapped with Coban wraps and my legs were finally to a shape where I could actually wear compression stockings. WooHoo!!! I have not had lymphedema pain since I started wearing my compression stockings (actually since I started being wrapped with the Coban wraps but that was not a long term solution, that was to reduce my leg size). I have even had days where I had to sit at a desk all day and when I took off my stockings before I went to bed, my legs were soft. This is amazing. Usually on those type of days my legs were to the point of breaking open (and I had the pain that goes with it).
So I am saying compression is the key but the same type of compression will not work for everyone. Some people can’t wear stockings so they will have to find other alternatives, such as Farrow wraps , regular compression wrapping, etc.
Now, if only we can get doctors to know about lymphedema and understand that the earlier a person is diagnosed and treated for lymphedema, the better the chance that the effects of lymphedema can be minimalized. (Plus get the government to subsidize it)
If only my childhood family doctor had gotten me into compression stockings at 12 instead of telling me lymphedema was just something that I had to live with…..
I started treatment about a month and a half ago. My right leg and foot is much smaller than it was. I have been measured for my custom stocking and toe caps. We are treating one leg at a time. Once I get the stocking, we will be starting the treatment on my left leg and foot.
The treatment consists of a therapist wrapping my leg and foot with Coban2 Two Layer Compression System two or three times a week. This wrapping stays on my leg and foot at all times. The therapist cuts it off and reapplies new wraps when I go for my appointments. The wrapping does not hurt when it is being applied. The only time I have had actual pain is when I have had issues with my feet. One issue I had was the wraps were making my toe creases crack which caused a lot of pain. I know I could have taken the wraps off but I was so afraid that I would swell back to where I was before I started the wrap that I didn’t want to take that chance. The other issue I had and I am still having is pain on the side of my foot. I am fine as long as I am active but once I go to bed, the side of my foot starts hurting a LOT after about 30 minutes of elevation. I then need to get up and walk around for a minute and the pain goes away. I then go back to bed again and then after a half an hour the pain is back so once again I get up and walk around and then go back to bed. This is the routine I follow every night. (My therapist keeps trying to wrap my feet differently and adds more padding but nothing seems to work to get rid of that pain yet) I am tired but I know it will be worth it when the therapy is over and I am wearing my compression stockings.
So that is the physical hurt, but what was even more difficult for me was the psychological issues I was having with treatment. At the beginning, I was feeling disabled again. I was worried about exercising because I was afraid that the wraps would be damaged by the sweat or that they would fall off. I also need to wear a cast cover to take a bath and I need 3 hands to get it on and off so I have to depend on someone to help me. This all made me feel really sad and frustrated. Now that I am back at the gym regularly, I am feeling stronger again. I still hate not being able to take a bath whenever I want to but it is only for a few more months.
People have asked me why I am going through all of this since I seemed ok with the way things were before I started the therapy and, when therapy has been making me go through this amount of pain, I have to be honest, I ask myself that too…The truth is that my lymphedema was going to get worse as I get older if I did not get therapy and use compression garments. Within 20 years I would most likely be in a wheelchair (no matter how much kickboxing I did).
My therapist believes that she can get my legs to a size/shape that will allow me to wear compression garments within 4 months (so 2.5 months left) and that will greatly reduce my every day lymphedema pain and keep my swelling under control so I will be a lot less likely to need a wheelchair…EVER. I have to keep at it…for 2.5 more months anyway…
I was going to write about preparing for the Lymphedema Awareness Seminar that I am organizing but this past week has been very eventful.
When I was advertising the event on Facebook I decided to do some paid advertising. After submitting my ad I was told that I could not use one of the photos to advertise my seminar because it contained a body part that was “undesirable”. I posted on my Facebook status that this upset me, not realizing the results that one little post would have. People started sharing it and then I realized that this would be a great way to promote awareness so I then edited my post and said “please share” and boy did people share… At this time it has been shared over 1600 times and that is not including the posts that people created themselves and it has gone worldwide. To show support for me a lot of people with lymphedema started posting photos of their legs (and some of them had never shown their legs in public before). I was overwhelmed. People’s stories of their feeling of isolation and their happiness of seeing someone actually creating Lymphedema Awareness were amazing. Then someone decided to report my post’s photo to Facebook claiming it was nudity. Facebook asked me to remove the photo but I would not delete it because it was not nudity and the person who reported it knew it was not nudity. He or she was just being a jerk. This actually made me more upset than the original Facebook issue because this was a real person who complained. I didn’t realize that my legs were so offensive that it made someone report them (I have seen a lot of offensive things on Facebook and I don’t feel that my legs can even come close to being as offensive as them) . Eventually Facebook investigated the photo and decided it was not nudity and they did not delete it (I am still not allowed to use it in my paid advertising because it “shows a body part as undesirable” but I can use it on my own Facebook page). I was then asked to do a segment on the news talking about the Facebook issues. This was definitely a great opportunity to bring Lymphedema Awareness to the public. Thanks CTV Atlantic News and Kayla Hounsell for giving me the opportunity. This news clip has now been shared worldwide. (I have included a link to the clip at the end of this post)
My goal for this year was to bring Lymphedema Awareness locally, I had no idea that one little Facebook post would create such a buzz and be as far reaching as it has been. Thank you to everyone who has shared my posts, news clip and tweets and created your own to help raise awareness of lymphedema. I have just found out that Kathy Bates has seen my story. Here is a tweet from her: