Friday, April 23, 2010

Battle of the Bulge

My leg has improved considerably since I started bandaging my leg but I have these two extremely annoying problem areas that are more stubborn than I am...My knee and ankle are just not fans of getting smaller. My calf and thigh will be practically the same size as my other leg but there are these odd bulges in my knee and ankle. There are lymph nodes in both those areas so possibly that is why those two spots are the worst.

My occupational therapist suggested I get creative with the foam padding and make shapes to help the swelling in the problem areas. It sounds bizarre but it actually works. I have two foam shapes that I place on my knee and ankle prior to wrapping. I place the foam over the stockinette though because it can be a bit irritating on bare skin.

Oddly, this condition requires some creativity. Try out different shapes and ideas with the foam to help with your swelling. Also, there are some stockinettes that have mild compression built into them. They can be a bit too tight on the upper thighs but I wear it over the foam padding and that seems to work also. My knee went from looking like a bagel to being able to see my knee cap! I need to figure out where to get some of these supplies so I will post places once I get more research done on pricing and where to buy.

Lymphatic Research Foundation Walk-a-Thon

The Lymphatic Research Foundation has posted in their March 2010 newsletter information for hosting a Walk-a-Thon. This is such a wonderful idea! They will even send you materials to use as a guide for hosting the event. I think I am going to try to host this in Chicago. And, since it is a Walk-a-Thon, all of us suffering from Lymphedema can participate!
Go to March 2010 Newsletter.

Not a painful condition?

The doctor that gave me the diagnosis of primary lymphedema stated that the condition was not painful. While I think he is a wonderful doctor and would not have found treatment without him, I still do not agree with him that this is not a painful condition.

This condition is without a doubt uncomfortable. My leg will turn bright red and feel as though it is on fire it is so hot. The swelling causes an ever present feeling of thickness and uncomfortable feeling that never goes away. Then there is the aching feeling and throbbing sensation that I feel at times. In fact, almost every person I have come into contact with have said they do feel pain. I am not saying that I am walking around in excruciating pain all the time, it is not often and usually only accompanies the "bad days" but it is yet another important indication that so much more research needs to be done about this condition.

I am truly grateful for the bandages and they have without a doubt changed my life but I can't help but think while I roll and wrap every single night that there has to be something more that can treat and possibly cure this condition. Wrapping seems archaic compared to the medical advances of our time.

Luckily, there are people out there trying to find answers. Here are some of them:



And that is all I have found now but will continue the search for others working towards treatment options and possibly a solution to lymphedema.

Tuesday, April 20, 2010

The Inevitable Stocking Crisis

They are thick...

We have to wear them...

They fringe on hideous...

They are compression stockings!!!

As someone who suffers from lymphedema, I have two options; 1) Wear the compression stockings and face the odd stares and questions like, "what is on your foot?" or 2) not wear stockings and become Elephantitis woman. Basically, I have only one option. While the compression stocking companies have vamped up their product now making them softer, in various colors and sheer, one still cannot get away from the fact that they are still very obvious and not all that attractive.

The winter time presents few problems with wearing the stockings since they are rarely in view and keep you warmer. I bought a black pair of Jobst stockings and they actually are attractive enough to wear with dresses in the winter and look very similar to regular stockings. If the color is off just throw normal, light weight stockings over them.

With the summer months approaching, so does the question, "what the heck do I wear?"

If you have fair skin like I do then you have realized that the beige stockings that the companies sell in no way resemble your skin color. Yes they are obvious but there are ways around it.

One Word (well two): Maxi dresses. You can find them pretty cheap at Target and many boutiques carry them for not too badly priced either.

Next, if you want to wear other items of clothing, go for it. I really love my leggings and I just got a flowy tank from H&M for $9 which I was largely proud of. So I said, who cares, threw on my leggings over my compression stocking. I was having a good day so my leg wasn't very swollen. I walked all around Lincoln Park, Chicago and went shoe shopping. Did many women stop and stare at my leg? Yes they did. If it went on beyond the time frame for pure curiosity I just stared back. They look like the jerk staring at someone with an obvious disability... Most people are not going to ask you what is wrong with your leg or what you are wearing because they know it is rude or none of their business. Stares will probably replace the questions so be prepared for them. I honestly believe that most people are just wondering what it is and then if they notice the leg is swollen, they are probably just curious as to what condition we have.

I have days wear I still hide my leg in baggy pants and sneakers and then others, I brave the stares and wear whatever I want.

I am nowhere near brave enough to wear the stockings with some shorts...mostly because that would be a very weird outfit.

My point, wear what makes you feel good and ignore the stares.