The Untold DEHP Story of My Girlfriends

Dear Catheter user,

Hello, it is me, Madonna Long. This is a hard letter to write, but I must. I would like to tell you a story about my rolling girlfriends. This is the hardest story I have to tell you. BUT if NOT NOW, then WHEN??

Amy Malmgren woman long blonde hair black dress in wheelchair Madonna Long woman with blonde hair in red suit dress in wheelchairFirst of all, I met Amy Malmgren over 19 years ago, we had so much in common. Both of us were single paraplegic mothers with our kids at home. We were just trying to make sure we took care of our children. I had three kids at home and my oldest was in the Navy.  Amy had all three of her boys at home. Joe was in high school, and Dom and Dev (the twins) were in grade school. The twins were close to my youngest kids Julie and Tanner.  My son Josh was older than Joe, although it seemed as if we had so many similarities in our lives.  An amazing friendship was forming, although I lived in Pennslyvania and Amy lived in Denver.

I was eight years older than Amy but we just hit it off from the go. We started putting a small consulting company together called Loops Media Group. Amy was a wiz at websites, so we were off. Down the road we took care of each other, when I got a consulting job I made sure Amy was hired and she did the same for me.

Amy and I were so close, we talked each day and our kids felt like they were family, even though we were 3000 miles apart. I flew out to meet Amy in 2007 in person. I was so excited to meet her and her boyfriend Jeff, and also see one of my longtime friends Bubba from Wyoming.  Flying into the airport, she insisted I go up to the escalator. I was not going to do that, but she insisted. While Jeff went to get the car, she said, “come on let’s go”. I said. Now, Jeff is gone”?  Who is going to be behind me I said?  She said she would me. I have no idea how she talked me into that. But there I was going up the escalator with her behind me. I  am not sure why I did not fly backward and take her down the steps with me, but we made it. When we got to the top, she laughed and said ” You have little T-Rex Ams. I just laughed and signed, thanking God I made it. Who knew what she would talk me into next.

Amy and I went out with Jeff and a few friends and what a weekend. I am sure Denver would never be the same after two young single mothers who happen to be in wheelchairs took on the town.  In fact, I could not play pool and Amy could. She begged me to play and I refused to play. She insisted, so I said to her. “If you can hit the shot between my toes I will play pool with you”.   Thinking that would deter her, no it did not. So she said put your leg up on the table and I took my high heel off and I did. She not only hit the shot with the cue stick through my big toe and second toe, she sunk the ball. The entire bar went wild watching two girls in wheelchairs make that shot. That was Amy she was relentless, which made us great business partners.

No matter what type of opportunity each of us got we shared our income. After I started to work with Pride Mobility and go to Capitol Hill, I would at any event make sure Amy came also.  We were asked to test drive a NASCAR that was accessible in New Hampshire. So Amy came along with me and three other of our girlfriends. When we got to the hotel we rented a minivan that was not accessible, except it had had controls in it. All of us could jump in the van to the car seats. We also had one of our girlfriends son bring the wheelchairs in his truck to the track, since there was no room in the van for five wheelchairs.

On our way to the track, Amy was driving, and back then there was no GPS at that time. Also no cell phone with navigation. Just a car full of women in wheelchairs trying to get to the race track and drive a car that went 200 miles per hour. Of course, we were lost and Amy was driving fast. Then we noticed the Highway Patrolman who was pulling us over.

Amy commented to me, as I was in the front passenger seat. “I will just tell him we are heading to drive a race car”. I looked at her and said, “No way we are all going to jail then and we do not have any wheelchairs”. The entire van of our friends broke out in laughter.  The patrolman was motioning for Amy to get out of the car, she was shaking her head no.  He came to her window and said. “Maam I need you to step out”.  We all looked frantic, she said.  “Officer, we are all in wheelchairs there is no way for us to get out of this vehicle”.  He said. “Where are the wheelchairs”?  Can you imagine he thought we were lying? I interrupted in and explained that our friend’s son had the wheelchairs we took a wrong turn.  Amy had that look on her face, and I knew that look, was going to get ugly. He gave us a ticket and directions. Amy of course cursed a few as we all laughed and headed to the race track.                                                                  (photo of Amy & Madonna at the race track)

 

people in wheelchairs discussing taxi accessibility The MV1 (Mobility Vehicle 1) by VPG Autos, had just been launched and they hired me to work with the Chairman, and CEO and put together a team of advocates. MV1 was the first manufactured accessible vehicle taxi made ADA compliant in the USA.  I knew just where to start finding our wheel woman advocates. I hired Amy, this gave her $2500.00 more a month to work with, and trust me when you are a single disabled mother with little help from your ex-husband, every little bit helps. We had so much fun we traveled to auto shows and around the USA with VPG Autos.  Often I would also pay for Amy to come to Washington DC to work on capitol hill with me for Quantum Rehab & Pride Mobility Products.

Amy and I had a friendship that seemed it would last all of our lives, but that was not the case.  In 2015 Amy was diagnosed with Bladder Cancer and she knew she could beat it. A year earlier her urologist had misdiagnosed her cancer as scar tissue from the  Mitrofanoff procedure that is used with a tube belly which allowed her to urinate by using a catheter. The tube is made from the appendix. It connects the bladder to a small hole created in the belly button or in an area in the lower belly.  Amy was having trouble inserting her catheter into the hole in her belly.  A year later it was impossible to insert and she went to the emergency room and told the ER Doctor it was scar tissue, he then diagnosed her with stage 4 bladder cancer. Within one year she had died.

I remember flying to Denver and being with her as she was going through chemo, I do not wish that on anyone. It was so painful watching this woman fight as she did. The same girl that was sixteen and a mother who became paralyzed and raised Joe and later had her twins while a paraplegic was fighting for her life. She said crumbs and I begged her to eat and she could not. Amy would miss Dom and Dev graduating that fall, she would miss Joe’s wedding, and she would miss the birth of her granddaughter, Macy. She missed that part of life because I believe all of the years she used products that contained DEHP.

A year after Amy passed away, I was at the Cure Medical Both and their marketing director Lisa Wells, called me over to say hello. She knew I worked for Quantum. She said what catheter do you use? I showed her and she then informed me that product has DEHP in it, and she explained what DEHP is. I had used that product for 35 years 6 times a day, and that meant I had 76,650 possibly exposed myself to bladder cancer without knowing it.  No one told me, not my provider, not the manufacturer that I knew the warning was on the bottom of the box. That is why I am telling this story. Amy is why I am telling this story and for my girlfriends.

There is NO good reason that these products use known carcinogens and can lead to cause reproductive harm or cancer are being used and paid for by insurance.

Later this year as I was putting together Summit Services & Supplies as a company, I learned that my girlfriend Karen Roy and fellow advocate was diagnosed with bladder cancer.  As Medicare Beneficiaries, and Medicaid Beneficiaries we should demand that our insurance providers not pay for any product that contains DEHP, but most of all we as Providers must inform our clients their products contain DEHP. We do just that at Summit Services.  But as consumers look at the bottom of your boxes of the products you use. If you need to ask me, then call us at 307 877 2993 and we will look it up.

As consumers with disabilities who use urological products, we should also inform our physicians. IF NOT NOW then WHEN. DO IT FOR YOUR FRIENDS.. Do it for your Girlfriends, so that you grow old and laugh in the sunset.   Madonna Long