10 posts from June, 2014

“Sharing has given me support” – PatientsLikeMe member Debbie opens up about her MS

Posted June 9th, 2014 by

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)?

http://www.thedp.com/article/2012/09/leapp-brings-medical-students-closer-to-patients

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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“I know that it will pass eventually” – PatientsLikeMe member Jennifer shares about her PTSD

Posted June 6th, 2014 by

June is National Posttraumatic Stress Disorder (PTSD) Awareness Month, and recently, Jennifer (aka sortaborderline) spoke about her personal experiences with the neurological condition. She talked all about learning to roll with her triggers, leaning on her family and PatientsLikeMe members for support, and recognizing the relationship between her fibromyalgia, myalgic encephalomyelitis (ME/Chronic Fatigue Syndrome) and PTSD. Check out her full interview below.

 

What went through your mind when you were first diagnosed with PTSD?

I already thought that PTSD was the problem, but it was such a relief to know that I wasn’t “losing my mind.” I have a legitimate disorder, not something that I can wish away or just “try harder” to ignore or push through. I actually felt empowered. Now I knew for sure what was going on, so I could work on treating it. Putting a name to the disorder really helped take a lot of the fear out of it for me. When I am triggered, I know why and I know that it will pass eventually. Just that little bit of information gives me so much more power over it as opposed to before when I didn’t know what was happening.

What have you learned about living with PTSD in the years following your diagnosis?

For the most part, I have learned to roll with it. Not that it is easy or that learning that hasn’t been difficult. I have learned that it is okay to share with my support system when I am triggered and ask for help getting myself back to center. I have learned that it is okay to share how I am feeling with my husband. That was a big step for me. Not because he hasn’t always been supportive of me, he has. Because of my particular issues, it is difficult for me to trust people with my unfiltered self. I’ve learned that I can with him, and it has helped strengthen my marriage immeasurably. People on the Mental Health board at PatientsLikeMe have been incredibly helpful and supportive of me and I know that no matter how bad it gets, I can pour it out on the page in my journal and be supported. For one thing, it can be cathartic to get it all out on the page. For another, it helps me to get feedback. Sometimes all it takes is someone reminding you of the coping skills I have to help me get my bearings.

In addition to PTSD, you’re also living with fibromyalgia and ME/CFS – do you notice a relationship between your conditions? How does one impact the other?

My diagnoses are essentially intertwined. One can trigger the other. If someone is having a long or particularly painful ME/CFS flare, that can make a neuro-typical person anxious. For a person with an anxiety disorder, that is amplified. The pain from the ME/CFS is exhausting. All of those pain signals bombard your brain for days on end, and your brain gets tired. It makes it difficult to think, resulting in the bane of the CFS/ME sufferers’ existence, the dreaded fibro-fog. It is very difficult and emotionally draining, not to mention the effect it has on your sleep. It is difficult to use learned coping skills when you’re exhausted.

On the flip side, anyone with an anxiety disorder can tell you that there are physical symptoms when you’re triggered. With ME/CFS, that is amplified as well and can trigger a flare. Which can amplify the anxiety trigger. It can be viciously cyclical. Sometimes, I just have to rest. There is nothing else to be done. Rest, a good diet, and hydration are the best thing to break it sometimes. If anything, I have learned to pay attention to subtle changes in my body or mood so that I can try to mitigate flares and triggers whenever I can.

You mention a “normal” mask on your PatientsLikeMe profile – can you share what means for you?

I am a mother of two children, I am a wife, a daughter, an aunt, and a granddaughter. I am trying to build a career and lead a full life. People depend on me. I have to “fake it until I make it” a lot of the time. It is difficult. It is nice to be able to take off that mask and be frank about what I am dealing with in the safety of the PatientsLikeMe Mental Health forum. I truly believe the help and camaraderie that I have found there has helped me to maintain a stability that I didn’t have before I found it. I feel much less alone in my struggle, even when in mid-episode, and as much as my “in person” support system is helpful, sometimes you just need to talk to someone who has been where you are. It is indispensable.

How have the connections you’ve made with others in the PatientsLikeMe community helped you to take that mask off?

I am not afraid of my symptoms anymore. I am not afraid to let my feelings out a bit more. I am not afraid to reach out and ask for help, nor am I afraid to offer help to others. Even a little note of support can help pull someone back on the path they want to be on. People on the forum have done it for me so many times. Having a cheering section helps you get the strength together to keep fighting. I know that, and I offer as much support as I can to other members because it matters. I feel like I matter. Even when my symptoms are at their worst and I feel weak and small, I know that a note of support to someone else matters. Sometimes when you can’t bring yourself to matter to yourself, mattering to others can keep you going until you can.

What advice would you give to someone who has just been diagnosed with PTSD?

Don’t be afraid. Don’t let negative stigma regarding mental illness keep you from getting help. Our disorders are just as valid as physical illnesses. They need treatment in order for us to function and live our lives. Therapy was absolutely essential to getting me stabilized. It truly helped me to manage my disorders and start living again. If you don’t “click” with the first therapist, try another. When you find the right fit and do some hard work, it will make a huge difference for you.

I have found the tracking tools on PatientsLikeMe to be immensely helpful, especially in the beginning, for tracking symptoms to see if there are patterns in my triggers and symptoms, which has helped direct my therapy and coping techniques. The medication tracker has been helpful as I am one of those super fortunate folks who seem to have a proclivity toward weird side effects from medications. That way I can remember what we have tried and how it worked. Visit the forum. Check out my journal if you want, it’s public. There are folks who have just hung out and read the forum for months before joining in, and that is okay. It helps to see that others think like you and understand what you’re dealing with.

Most importantly, don’t give up. It can get better.