As PatientsLikeMe member Debbie (chilli123) says, it’s a very private decision whether or not to discuss MS openly. But as you’ll read, she’s doing more than just speaking about her MS – Debbie is spending time with others so they can better understand what life with a chronic condition is like. Debbie also talked about what it’s like to be a mom living with MS, her volunteer work with Penn’s LEAPP program and the inspiration behind her MS blog Adaptolution. Read on for her full interview.
A lot of MS members have shared that finding a diagnosis isn’t always easy – what was your experience like?
For the first eight years of living with MS, the disease was not visible to those around me. However, I have not shied away from discussing my disease. If I can educate one more person about life with a chronic illness, then I could make someone else’s struggle just a bit easier because they will be encountering people who understand. Everyone around me has been supportive. It is a very private decision whether to discuss MS openly – for me, it has allowed others to come into my world a little more and chronic illnesses are isolating. People want to help if we let them. I welcome dialogues about MS wherever I go because it brings awareness to a disease that can easily hide.
To this end, I volunteered at Penn with the LEAPP program. It allows first year medical students to shadow me and see what life is like with a chronic illness. Diseases from diabetes to heart conditions are represented. I represented MS. Again, my thoughts are if I can help one of these students understand what it is like to live everyday and every moment, someone out there would benefit. Furthermore, how awesome would it be if one of these students identifies MS in rounds because of this (that happened by the way)?
It is a completely different experience walking around with an unidentifiable disease than roaming around in a wheelchair or scooter. Once I became pregnant, my MS went into high gear. That is when I became less mobile. Rolling around in a wheelchair gives me a completely different perspective. Now life is about inclusion. If there is no ramp, I can’t go in. If a friend’s home has too many steps, I can’t go in. Due to the planning it takes for me to go places and be active, I have to reach out for help and share my struggles. Otherwise, I would be severely isolated. People stare because they cannot understand why a seemingly healthy woman is riding around in a scooter. A security guard in the Bahamas asked me if I just didn’t feel like walking around. I did not respond with anger or frustration. He learned more about neurological diseases than I’m guessing he wanted to know.
So far, I have not been judged poorly for having MS. Sharing has given me support, connections, and strength while educating others.
You just started your first blog, Adaptolution, in April – what inspired you to start blogging about your MS?
Now that MS has started pushing into the harsher stages, I find myself fighting to see hope, staying above water, and staying positive. There will be days where the pain becomes overbearing, the exhaustion cumbersome and everything stacks up. In those quiet desperate moments, something positive will come along that changes the momentum to a happier, better place. My blog is finding those moments and celebrating them.
When I travel around during the day, people will stare, look at me, then look at the scooter, look at me, then look at the scooter. I am quite used to it at this point. But when my baby Aaron had that first moment of awareness of that thing mommy was riding around in, I was about to be a crying heap on the floor. He looked at me, then looked at the scooter and back at me. In that moment, I decided that my scooter was not a scooter. It was a racecar, and we sat Aaron in my lap and we drove around the house to his delight. I refuse to let the sadness and pain of this disease rule my life or my family’s life.
Walk us through a day in the life of a mom living with MS.
While I am not married, Aaron has the most amazing daddy in the world and I have a loving and supportive counterpart, Ken. I cannot say enough about how much his support helps me live this life. Now that mobility is an issue, getting up and getting dressed in the morning is the most difficult part of my day. I learned from OT that the more planning I can do the night before with preparing for the next day, the better. I have help with Aaron throughout the day and the help arrives in the morning. While I try to dress as quickly as possible so I can get in to see him (his squeal of delight in the morning is the best), it takes an enormous amount of time and effort. I get in to spend some time with him at breakfast while preparing for the day and I head out to the office. I can drive because I purchased a wheelchair van the moment I saw the writing on the wall with my mobility.
Once in the office, I work on product, talk with customers, check in with all of the staff and get as much done before I am completely wiped out. I usually leave the office at three and head home to Aaron. Once I am home with him I try to do as much as I can with him like reading to him, sharing snacks, watching Baby Einstein, and his favorite…I chase him in the scooter while he runs around in his walker. While I am blessed to have the help I need to enjoy every moment I can with Aaron, MS has changed how that occurs. My arms are too weak to pick him up, so we stay in the floor or a closed space so I can keep him safe. There is always someone around to help me with all aspects of caring for him.
By the end of the day, I am wiped out. But I am truly amazed that with as much pain, fatigue, and damage MS has done, I am living a rich, full life. There are many days where getting out of bed is not an option. The MS pain and fatigue can be unbearable. On those days I will work from home on my computer in bed, if my hands are working. Aaron will hang out with me in bed while we watch Baby Einstein. Ken will oversee the business operations so that all runs smoothly at work.
How has the MS community at PatientsLikeMe helped you learn more about your MS?
PLM has been an amazing resource for me during the years. It has helped me most with navigating what treatments to try and when. It allows me to see how other people are affected by any number of treatments. Furthermore, it allows me to share my own treatment stories to help others. Most notable are my stem cell treatment in Germany and the CCSVI procedure in California. I spent many hours talking to others on PLM about their experiences and tried to give as much of my own information as I could.
I love the forums and I check constantly about what is trending. It gives me new leads to follow in research and it allows me to connect with others who are fighting a similar battle.
Here at PatientsLikeMe, we always work to put the patient first. What’s one change you’d like to see in healthcare to make MS care more patient-centric?
I have been incredibly blessed with a successful business that has provided me good healthcare. That good insurance has allowed me to see good doctors at good hospitals when I have needed to. However, that being said, I have had to fight my way to get my needs met even with health insurance. I need all sorts of equipment to survive. My insurance has covered very little of it. Proper wheelchairs, scooters, leg stim device, ramps are just a few.
I had to fight to be part of the Christopher Reeves program at McGEE in Philadelphia because I had MS and was not a “stable spinal injury.” I had to fight to get onto Rituxan because it was approved for RA/Bcell leukemia, but not MS.
I have created a tremendous support network to get through these battles – many do not. There needs to be more advocates, more support for those who are fighting the battles of their lives. Penn just hired a MS social worker just for these sort of things.
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