A Full Explanation

*warning* - extremely long post
Hello Everyone! I'm back! I'm sorry I've been out of sorts lately. I do have a reason why. I was debating whether to post this or not. Not because I'm ashamed of it or anything, more or less because I don't want to come across as being "woe is me". I will explain.

Remember when I got sick in January with cellulitis in my leg? Well, when I was in the ER, the specialist came in to look at my leg and determined that I had the cellulitis and said that they were going to admit me and give me the IV antibiotics, etc. Then what happened next still baffles me.

Doctor: "Besides your cellulitis, I have a question for you. How are you treating your lymphedema?"

Jodi: "I don't even know what that is?"

Doctor: "Didn't you realize that you are retaining fluid in your calves?"

Jodi: "Well yeah, but I just thought it was fluid retention"

Doctor: "It is not water retention, you have lymphatic fluid in your legs which you will need therapy for"

And so began my life with Bilateral LE (lower extremity) Lymphedema. Apparently I have had it for years and I just didn't know it. I will spare you the details of how I now look back and go..."ahhh, so that is why that happened" moments. What I have is called primary lymphedema. People normally either get it in their legs or their arms. Primary patients develop lymphedema on their own or it can be genetic. There is such a thing called secondary lymphedema. Most people develop that as a result of something, such as say if a woman had breast cancer and had either a breast or lymph nodes removed. That can cause lymphedema...but for a secondary reason.

A real explanation rather than a Jodi explanation of lymphedema ~
Taken from http://www.vascularweb.org/
"Lymphedema occurs when a clear fluid known as lymphatic fluid builds up in the soft tissues of your body, usually in an arm or leg. The lymphatic system consists of lymph vessels and lymph nodes that run through your body. Lymph vessels collect a fluid that is made up of protein, water, fats, and wastes from the cells of the body. Lymph vessels carry this fluid to your lymph nodes. Lymph nodes filter waste materials and foreign products, and then return the fluid to your blood. If your vessels or nodes become damaged or are missing, the lymph fluid cannot move freely through the system. The fluids can then build up and cause swelling, known as lymphedema, in the affected arms or legs."

Basically what happened in the hospital is that the cellulitis aggravated my lymphedema and made it worse. I've been in *alot* of pain for the past two months. So that is why I have been slipping off my blog wagon a little more than usual. Until I started therapy I had to keep my legs elevated as much as possible as not to have the fluid settle in my calves. My problem really was in my shin and ankle area. They hurt the most. If you remember with the cellulitis, my shin was where it started so as you can imagine it did a number on the lymphedema.

I have been on a waiting list for the therapy I need to move this fluid out of my legs. There are not many physical/occupational therapists who specialize in lymphedema. There is a handful in NJ. That is why I had to wait so long. I just started the therapy this past Monday. I go three times a week - Mondays, Wednesdays, and Thursdays. What it involves is this. I get what is called a MLD massage therapy first. MLD is short for manual lymph drainage. It is a very light massage. I would say it is the equivalent as if you were to put lotion on your body, some light pressure. It is from toe to head, in that direction to allow the channels to open up. Then comes the fun part. I am then wrapped up like the Michelin ™ Tire Man - from the foot to the knee on both legs. I have first a stockinette which is like a stretchy ace bandage that goes on first to protect my skin. Then, I have a cotton layer put on. After that is 1/4 inch foam padding which makes this SO incredibly bulky. After that, on each leg I have 4 short stretch bandages. They look like ace bandages but do not have nearly any of the stretch that an ace bandage has. This is what supplies the compression I need to push the fluid up and out of my leg. After that layer is another stockinette to protect all the layers to keep them in place and also to allow them not to get dirty. Where does all the fluid go you ask...to other channels and mostly it is peed out. However, all of this makes one look like the Michelin ™ tire man from the knee down.

Here is what I look like all wrapped up - please note the stockinette is covering everything.

Here is a closer view when I pull down the stockinette. This shows the first stockinette, the foam and then the compression bandange. Sexy isn't it????


Why did I not share all of this before? I don't know. I guess I was just in my own world when I found out. See the thing is, lymphedema has no cure. I will have this the rest of my life. This will require constant maintenance. I will always have to wear something on my calves - day and night. Forever. So yes, I have been depressed about it and putting it "on paper" makes it real. The pain has been really bad for these past two months and I guess it was more or less if I didn't "talk" about it, it wasn't there. I am sorry that I didn't share this with you all sooner. I hope that you all can forgive me.

What happens from here ~ I will be in therapy for about 6 to 9 weeks. I will go three times a week. I will get wrapped there and on my off days I will have to wrap myself. This should prove to be interesting because I will have to take lessons from Bud's French twins on flexibility. I have not wrapped myself yet. I will do so on Saturday. Ugh!

After my therapy is over I will be custom fitted for compression garments. I will have to wear these everyday during the day for the rest of my life. (my legs will look just like that too LOL!)

For evening wear, I will have a choice of either wearing the wraps that I have now which take FOREVER to put on and forever to roll everything up when you take them off. OR...I can opt for the sexy night garment instead. Can you just picture how lovely this will all be in the summer?

Choices, choices!!! I wonder what the lesser of two evils will be. Now the fun part is this. Hopefully my insurance will cover all of this. For custom fitted day garments, they will cost approx $1000-1200 each. I will need two for each leg since I will have to wash them in the evening and allow drying time. So you are talking up to $4800 for daytime wear. The night garments are about the same price but I will only need one each since I would put a lovely stockinette on first to protect the skin. So now we are close to $7000. Oh yes, and they have to be replaced yearly. Lastly, did I mention that my boss is closing the agency on May 31st? But that is a whole other post. Another thing that has added to my depression and stress. I won't get into that now though.

I wanted to post the pictures of my legs though so I didn't scare you guys. They look bigger and bulkier because of all the padding and foam underneath the wrapping and stockinette. Poor Sue looked up lymphedema (yes, she knew but she was waiting on me telling you all) and it scared her what they showed picture wise on the internet. They show people with severe lymphedema...people who don't get it taken care of. My legs *do not* look like that. Thank the good Lord. I feel SO bad for those people because I know how painful my legs are. I can't even imagine how they cope and go through each day. So just in case any of you look lymphedema up, don't worry - those pictures are not me.

I will leave you with a YouTube video of a woman who wraps herself with a multi-layer compression bandage on her one leg so you can see what it is like. She explains lymphedema in detail and shows you how we have to put on the stockinette, the foam, and then the compression short stretch bandages. Please note that in the beginning she wraps her toes. I do not have to wrap mine thank God. You can skip that part and forward to where she puts the foam on so you can see where I begin. But, what she talks about while she is wrapping the toes is very interesting..

If you all made it to the end of this post - YOU ARE AMAZING! Thank you all for your friendship and reading this extremely long post. I hope I explained everything well enough.
.