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!


http://www.lymphaticresearch.org/main.php?content=home
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:

http://www.lymphaticresearch.org/main.php?content=home

and

http://www.lymphovenous-canada.ca/

and

http://www.u.arizona.edu/~witte/ISL.htm

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.

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.

Welcome

I am starting this blog as a way to cope with my diagnosis of Lymphedema as well as to reach out to those affected by the condition or to those who know someone who is affected by the condition.

I have titled it "Typical Girl" because I have had a difficult time feeling like a normal twenty something girl. It is with hope that through self management, treatment, spreading the word about the condition and reaching out to those like me that I will feel like a typical girl once more.


I will have postings talking about what to expect with Lymphedema, emotional reactions, insurance, treatment, fashion and resources. Some days are good days and some have left me not wanting to leave my apartment but I will talk about it all and share others to comment and talk about their experiences as well.

I also want to focus on fashion quite a bit because I am not ready to live my life in sweatpants and sneakers! Self esteem is a huge factor in dealing with this condition and wearing well fitted clothes that accommodate the infected limb and make you feel attractive are important factors in maintaining a healthy self image.

Read on!

Feel free to leave comments and advice.

Lindsay

First Fashion Post!

So my fashionable wardrobe seriously declined as my leg became more swollen. I had to say goodbye to shorts, skirts, skinny jeans, my three inch heels...

The intensive period of therapy which consists of wearing the bandages for 23 hours a day caused some freak outs. I had to rummage through my clothes to find a baggy pair of jeans and shoes that fit my bandaged foot. I had some great old vans laying around which fit perfectly. I did, however, feel that I was staring at a 16 years old version of myself in the skater girl phase...

The intensive period only lasted three weeks and then I was back to my compression stockings during the day again. I knew during that time that I was going to have to work on my self esteem and focus not on my abnormalities but what I do have. The more I try to find clothing that suits my leg rather than having my leg fit into fashionable clothing trends, the better off I have been. To be honest, I think I have looked my best as of recent because I am conscious of the comfort of my leg and I have more confidence in my features that do not revolve around my leg.


I have started a system for deciding on my outfits. I am one of those uber anal list makers. I have a list for everything...So I decided I would make a list of possible clothing choices for my date with my boyfriend and drinks with friends after. I made two columns, one for if my leg is having a good day and one for a bad leg day. That way when I got home and couldn't get my skinny jeans on because my leg is too swollen, I would still have another outfit to throw on. This actually works with my self esteem issues because if I have a cute backup outfit that allows for my leg swelling, I don't give up and decide to hide in my apartment.

My best advice is to make yourself feel good about what you are wearing. Just because we have lymphedema doesn't mean we have to put a sign on that says freak. If your leg is swollen, opt for a cute top and wide trouser pants with flats.

More posts to come about possible fashion ideas.

Embracing the Inner Mummy: Information on Bandaging

This post will review the stages of intensive treatment. This is such an important part of getting better. I was seeing a physical therapist for two months who did not do any of the necessary treatment steps for Lymphedema. The result of her lack of knowledge about the condition cost me hundreds more on top of my already mounting medical bills, caused my leg to worsen to the point that walking was incredibly difficult and painful. You must educate yourself about the condition so that you know whether you are receiving the correct treatment. Verify their background also!

There are three layers of bandages:

Stockinette
Foam and or padding
Bandages

The bandaging must be taught by an occupation or physical therapist because they will know the correct way to wrap your leg and teach you as well.

I had two amazing occupational therapists that wrapped my leg and taught me how to do it myself.

First, I put on the stockinette so that the short stretch bandages do not come in direct contact with my skin. Then I put on my foam padding in my problem areas (this will be a later post). Then I start at my foot with the smallest bandage and work my way up to my hip. I wear 5 to 6 short stretch bandages. I have to wrap my leg every single night and perform the manual lymph drainage massage. The entire process takes about 45 minutes to an hour and is and will always be a pain in the butt. The reward: your affected limb smaller and less painful. I sleep in this every single night.


The first several weeks of wearing the bandages to bed will be rough. Sleep will be scarce because it is heavy and hot and you can barely bend your leg. It becomes typical to you after a while and soon not an issue. Also, when you are starting to learn how to wrap, there will be the nights where you were a bit too overzealous during wrapping and wrapped your leg a bit too tight. You will wake up in the middle of the night and not be able to feel your foot. This is not good. Take it off immediately. I suggest trying to rewrap which is not fun at 3 in the morning when you have to get up in a few hours BUT it will help your leg so it is worth it.

In short: wrapping is obnoxious and tedious and time consuming but your leg (or arm) will get better because of it and will be less swollen. Stick with it, it will pay off.


IMPORTANT: DO NOT USE THE METAL CLASPS THAT COME WITH THE BANDAGES, THEY CAN PUNCTURE YOUR SKIN AND CAUSE AN INFECTION!!!

I will post some pictures of my mummified leg shortly!