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…
People have been asking me “so what are you going to do now?” Well I am still going to promote lymphedema awareness as much as I can, I am organizing a Nova Scotia Lymphedema Support Group and I am in the planning stages for the 2nd Annual Lymphedema Awareness Seminar for next year but what I feel that I need to do most is FIGHT for LYMPHEDEMA COVERAGE.
From the moment I started looking for treatment, many years ago, I was told that there was nothing that was covered by the province. If I wanted treatment I had to pay for a private therapist, pay for my wraps and pay for my compression garment. I had insurance but it would only pay for $250 of my therapist (my bill was thousands), it would not pay for my wraps (close to $1000 if I remember correctly) and it did pay for the custom stocking). I did not have the finances to do as much therapy as I needed, I tried to rush it so it did not work as well as it should have and my legs never did get to a size or shape that would work with the compression stocking (the stockings that were specially measured still cut off my circulation, no matter what type I tried).
I had known that there were a couple of lymphedema therapists at the hospital but I had always been told that the only people who could go there were people who got their lymphedema from cancer treatments. They have now allowed me to see them. I will still have to pay for supplies but I will not have to pay for the therapist. I have been going since Thursday and we are taking it slowly so we are only doing 1 leg at a time ( which is fine with me since I am not paying for the therapist…). It is being wrapped with special compression wraps. The difference in my leg size and feel in one weekend is amazing. This is something that should be offered to everyone who has lymphedema and my goal is to find out why it is not and how we can change it!!! (by the way, New Brunswick does offer this to everyone with lymphedema).
Stay tuned…I am not done yet!!!
It is hard to believe that 1 little Facebook status could get lymphedema as much attention as it has. Thank you Facebook for deciding that my legs were not desirable and to the person who reported my photo of my legs for nudity. I could not have done it without you.
People have been asking me where they can find the stories that I have been featured in and I figured that if I post them all here then I can just send people here plus I can add to it if there are more.
Here are the different links to the different media stories about me and lymphedema:
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:
I have had a rough week. I went to a real estate sales rally last week and in 36 hours my legs gained 22 pounds of fluid (I would guess about 7 pounds in my left and 15 pounds in my right). Driving there and sitting through the speeches and then an extended drive home due to a snowstorm caused my legs to swell almost to the breaking point. To make matters worst my right leg did not go down in size at all this week. My left one seems to be back to normal, I mean normal for me, not normal for a normal person. 🙂
At one point in my life this issue would probably have made me stop doing everything and spend my time laying on the couch with my legs elevated and watching TV and feeling sorry for myself and everyone would have understood, especially if they saw my legs. I really felt like giving up. It would be so easy. No one would blame me…
…But that is not what I did. Instead, I continued to go to work. I went to meetings, I showed houses (even traipsing (Is that a Newfie word? Maybe, but you know what I mean) through the unploughed driveway of a vacant house after a snowstorm to show it to a client), did internet advertising, wrote up flyers, etc. I also continued to go to the gym. I was going to say that I probably didn’t get as good a workout as I normally do because I had to limit a few types of exercises but in reality I probably worked out harder because I still had to lift this bigger/much heavier leg just as high as I always have and I am sure that made a few muscles work a lot harder.
I am not giving up!!! I love my job and I love the gym (never thought that I would ever say that 🙂 ) and I love having a life where lymphedema is not holding me back (except for shoes…lymphedema does keep me from having nice shoes).
I can’t believe how much I have changed this year and I am not just talking about my appearance (and that has changed a lot).
The beginning of the year started off with me registering for the Body Transformation Program at Manimal Athletics. This was a big deal for me because other gyms would not let me join because I did not have appropriate footwear or they felt that their programs were too strenuous for someone with lymphedema. I was so happy to have a chance to go to a gym. I took it very seriously since I didn’t want to waste this opportunity. I believe that just doing this one thing was the base for most of the changes that I have experienced this year. Here are some of the ways that I have changed:
- Confidence – My confidence has improved in a lot in different areas of my life. The confidence that have I found through having success at the gym has spread to other parts of my life. I talk to a lot more people now. I start up conversations with people where ever I go. I feel comfortable talking about the gym, real estate, my lymphedema or just about anything.
- How I deal with stress – This was a big one for me this year. I have had the most stressful year of my life. It started of with having a major car issue that was going to cost thousands of dollars to fix and I still owed thousands of dollars on it. Then the plumbing in my house started leaking and the furnace gave out. Plus some bank issues. I am not even sure how I got through it all but I did. Normally when I was stressed I would have tried to eat my stress away. This year it was totally different. When I was stressed I went kickboxing. Hitting the pads is an amazing stress reliever. I definitely hit a lot harder when I am having a bad day. lol
- Stamina and strength – I am definitely a lot stronger now and I can be active for much longer period of times. The gym has made me physically stronger. I can lift and push things much easier now. I had to push my husband’s truck out of a parking lot a couple of days ago and I did it without even thinking about it. I also helped to empty a shed and storage unit a month ago and I was able to lift and move items all day long. That was amazing. Last year I could only do physical activities for about 15 minutes at a time. This has really helped me with my real estate career. I can now show houses all day long without a break and that includes homes with a lot of stairs. Last year I had some major issues with stairs because, with my lymphedema, my legs are very heavy and I didn’t have the core strength I needed to lift them (especially by the end of the day).
- Appearance – I have gone from someone who wore clothes that were a 2 o r 3 X to now wearing a large. I have also chopped off my hair. Oddly enough, the change in my appearance is not as big a deal to me as my other changes even though that is what most people probably think I mean when I say that I have changed this year.
- Promoting Lymphedema Awareness – I spent most of my life hiding my lymphedema, never mentioning it and definitely never showing anyone my legs. I am now dedicated to promoting lymphedema awareness. I started this blog. I talk about it. I show my legs to anyone who wants to see them. I have worn shorts at the gym (and even to my favourite drugstore (The Medicine Shoppe). I can not even tell you the last time I wore shorts in public. I posted photos of my legs on Facebook and on this blog where they were seen worldwide. I am now organizing a Lymphedema Awareness Seminar that is going to be held on March 5, 2016 in Lower Sackville, NS. If you live in the area please contact me for more info.
There are probably many more ways that I have changed this year but these are the ways that came to my mind immediately. I am sure my husband, family, friends and coworkers could come up with some more. I believe all of theses changes have been very positive and I am looking forward to seeing how I will continue to change in 2016.