Welcome to our lymphedema page! Here we invite you to sound off about your particular case and the complications, problems and frustrations that you encounter. I'll start with my history and then you can join in when you are ready.
I acquired lymphedema almost 13 years ago through a knee injury. Somehow, the incident should be more dramatic as it forever changed my life but it was a plain old knee injury. At that time in my life I was extremely athletic and very aware of how I looked. It was important to me to be tight, tanned and trim. I call it the "beautiful-person-want-to-be" syndrome.
After a short jaunt in California, I had returned to Wisconsin to finish my college degree at that time in chiropractic medicine (still young and unsure of what I wanted to be when I would finally grow up!). To finance my way through school I had returned to my old job at a local health and fitness center. Foolishly I was asked to teach as many as 8-10 classes per day and foolishly, recklessly, I agreed.
On a Friday night, in my very last class, I decided to kick extra high and burn some calories I knew I would take in over the weekend. Suddenly, I felt a snap in my right knee and knew immediately that something major had just happened. I walked the rest of the class putting as little stress on the knee as possible. Afterward, I went for an ice cream cone (see, I knew I would indulge) and then straight home.
The next morning as I was getting out of the shower I noticed swelling in my entire right leg. Thinking that there was something that was seriously wrong I called my employer and then went to the emergency room. They looked for fractures, sprains, strains, and blood clots but found nothing. Finally, they sent me home with no information at all. The leg continued to swell unchecked for several months as the best (LOL) doctors in the area tried to diagnose my problem. I remember silly things like the time I was sent for a venogram only to have them fail to cannulate the vein. If that was not enough of a comedy of errors as technician after technician wandered in to take their try at it they then sent me over in a wheelchair but forced me to walk back, barefoot. Clueless. The medical assistant told me that I could just "hang it from the ceiling". I can laugh now but it was a frightening time of my life.
It was not until I began to attend schooling almost a year later at the Marshfield Clinic in Wisconsin that a knowledgeable vascular surgeon finally diagnosed lymphedema. It has not been rosy since then but at least I know what I am dealing with.
Since then I have married a wonderful man who is willing to love me regardless of the ugliness associated with LE. The good news is we have a very normal 7-year-old boy (there is a silver lining in every situation!). My hips have deteriorated with arthritis and I now use forearm crutches, and a wheelchair if I am going to be out and about for a lengthy period of time.
Regardless of what the medical field says, there is pain involved in lymphedema. To prove it I would like to sprain all of the ankles of doctors, who disagree, then point out the swelling and ask if it hurts. As my little boy would say, "duh!"
Also, regardless of what physicians say, it does affect the rest of our bodies. Regardless of what the present and popular therapists say every case and every person is different. Not everyone will respond in the same manner and there is no therapy that is foolproof, at least not right now. I refuse to accept that just because a therapy comes out of Europe that it is the best just as coming from the US does not make it a wonder. Medicine is three quarters knowledge and the rest trial and error. We need to accept that fact. We need to also accept that not all treatments will be effective and that sometimes staying infection-free and on our feet is good management.
We also need to realize that we don't have to feel ugly or unwanted by virtue of having LE. Perhaps it is the rest of the population that has a need to fix it only cosmetically with wraps and coverings. We would not want others to feel uncomfortable after all <G>.
People are often rude or give us that pity look. The other day in the Denver Airport, I was approached by a stranger who wanted to know what is wrong. I wanted to tell her "shark bite". It leaves them speechless every time. Instead I told her that I had an accident. Then I had to listen to this person's dissertation as to what was wrong with every member of her family. She meant well…
The good news is that we have now entered the arena for discussion through a side effect of breast cancer. Not good that people with breast cancer and lymph node dissection are acquiring lymphedema but advantageous that the disease is at last being noticed. My concern is that the rest of us do not become lost in politics and be sidelined even further. I would like to see research and an answer; I mean a true answer to what the problem is and how to treat it. My feeling is that if we can re-attach limbs, do intricate brain surgery and anastamos just about everything else then there has to be better solutions to LE.
So, here is your opportunity to talk about you and how you came to be on this page. We are not looking for miracles but some place where we can talk about our issues (for example, Where do you find shoes? Do you hate the stockings and stupid little wraps as much as I do? Isn't there a better idea out there somewhere?!)
Jump on if you would like. The door is wide open.
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