Tuesday, May 25, 2010

Compression Hosiery in Lymphoedema


International Society of Lymphology


Monday, May 24, 2010

Reply to Comment by Elaine Sandhurst (UK)

It must be incredibly difficult to deal with this condition in both legs and I could not imagine the frustration and pain that accompanies this.

I do want to add, however, that my leg improved considerably with wrapping. I have much less pain, less swelling, increased ability to exercise, increased self esteem, etc. If my other leg develops Lymphedema, I would try to incorporate wrapping both legs in my life. It would be time consuming and frustrating but it could improve my condition and prevent my legs from worsening. I have experienced the result of not having any treatment on my leg and not wrapping it as I went a year without the correct diagnosis so in order to avoid the pain and extreme swelling I had to deal with for that year, I would wrap both legs.

Also, there are compression garments called sleeves and they make them for the legs now. Although they are so expensive (two would cost anywhere from $200-$400) I think I would try to save up for these items. These sleeves supposedly work just as well as wrapping yet you just have to put them on like pants. That is another possibility, albeit an expensive one.

Again, I want to stress that I do not know what it must be like to have to deal with both legs and I empathize for those that do. That would be a major struggle and would take a very strong individual to deal with the extremity of this condition.

International Society of Lymphology

This is a great article on treatment, research and directions in the treatment of lymphedema.


Tuesday, May 18, 2010

Goodbye Dear Friend

I have yet to formally say goodbye to a dear friend of mine: running. Before my lymphedema set in fully, I was running most days of the week and I have to say that I loved running. I felt free when I ran as though nothing could touch me.

When my leg started severely swelling I stopped running because my leg was heavy and it hurt to run. After treatment, I eagerly looked at my doctor and asked him when I could return to running. He told me running was one of the worst things I could do for my leg. He also informed me I could no longer get pedicures--double blow...

Just in case, I asked each of my occupational therapists (I had two) and they both said no.

Since then I have avoided my Nike shorts and brightly colored sports bras and all of my running apparel. I wear my running shoes on "bad days".

So, I wanted to take a moment to tell running goodbye. We had it great while it lasted.

And to all of you who had to give up something because of this condition, I hope you can find something that will replace what you miss.

Insurance Frustrations

If you suffer from Lymphedema, you more than likely also suffer from anger and helplessness...against your insurance company. Despite providing my insurance company with plenty of information regarding all of my doctor's visits, diagnosis, medical records, prescriptions, etc., my insurance company without fail either delays payment of legitimate claims that should be processed immediately or they will not cover the claim at all. In fact the most frustrating thing about dealing with this condition is the lack of humanity expressed to me by my insurance company.

Example: For the fourth time now, I purchased compression garments through a company. When I received the invoice, I sent my insurance company the RX, the diagnosis code and the invoice. Despite this being sufficient for all previous claims, they now have an issue and since I did not have the medical equipment companies submit the claim, they may not reimburse me for the $250 worth of compression garments.

I have learned this the hard way time and time again: be psychic when it comes to your insurance. No just kidding, but I am nearly serious. You need to think of all of the questions that are possible. I called and spoke to a rep days before I purchased the compression garments to ensure that they would be covered. I asked his name (also record their name down and date and time spoke to them), how much the insurance covered, how to submit the claim, etc. The rep failed to tell me that the medical equipment companies need to submit the claims or the proper way of submitting the claims. Despite that they have covered my previous claims and did not alert me that it was an improper method of submission, I continued to submit the claims myself.

I am not sure if there is a resolution to this problem with the insurance company. I will continue to push my point and most importantly, speak with a supervisor.

At times, I feel utterly hopeless having this condition. Insurance coverage, hospital visit costs, doctor visit costs have set me back considerably. When we are trying to push through the feelings of despair that our lives have forever changed with this condition, we also have to fight to have our insurance cover the cost of managing the condition. We have met doctors who have been wonderful and those that have blown us off or misdiagnosed. We have been looked at by others differently and we have looked at ourselves differently.

I also try to be positive because crying or punching a wall after I get off the phone with the insurance company does nothing. I guess we just have to keep going. Try to remind ourselves that things will get better, maybe insurance will get better or our condition will improve. If none of those things happen and we are left hopeless, may we be lucky to have the support of our family and friends.

Sometimes it is not enough to take each day as it comes but instead we feel we need to take each minute as it comes. We are luckily not going to die from this condition; we just have to fight to keep going. If you can make it through this, imagine what else you can cope with and overcome.