My lymphedema story started nearly a year ago. I was fortunate to have a breast surgeon that warned & educated me on the possibility of it happening after my lumpectomy, lymph node dissection, & radiation treatment for breast cancer. Up until then I had never heard of it before. I had 23 lymph nodes removed so the likelihood of it setting in was pretty high. It presented itself during my radiation treatments which I was in the middle of when COVID hit. My left arm, breast & side swell. The loss of range of motion, pain, discomfort & swelling are a battle to keep under control. Without my compression garments it would be impossible.
I am thankful for my lymphedema therapists & the help they provide me in getting what I need but it takes jumping through hoops to get my garments covered sometimes. I have 1 custom fit sleeve for night wear & 1 specialty compression bra for everyday wear. I have 2 sleeves & gauntlets that fit properly for day time wear. My medicaid paid for my night wear & my bra but I can only get 1 of each every six months. They paid for 1 of the many day time sleeves that I have had to purchase in order to find the right product for me. I spent over $100.00 a piece on the 2 that do work for me so I would have 1 to wear while washing and drying the other. I still have only 1 bra & night time sleeve to last me for 6 months of everyday wear. I went through many sleeves that I purchased on my own trying to find the right product. There is no opportunity to try before you buy & Medicaid only pays for 1 every 6 months. The fact that they have to be replaced every 6 months & washed constantly adds more expense. I just ordered another specialty bra because having just 1 bra to wear everyday for 6 months is ridiculous. That was another $100.00 out of my own pocket. Even with all that. I am fortunate.
I have talked to some lymphedema patients whose insurance would not pay for their garments, pumps or other equipment they need because they were not cancer patients. So they go without & suffer even more damage because they cannot pay for them. That to me is inexcusable! When 1 garment or pump can help to contain & manage this condition but it is not available to them at all & they have to go without & suffer, there is something wrong! Yes we feel the impact of this disease physically, emotionally, mentally & financially. Every day of our lives for the rest of our lives. Yes our garments are unattractive, expensive & hot & uncomfortable but going without causes so much damage & risk to our health & safety. Changes need to be made & I pray that they are soon. God bless all my fellow lymphies.
