16 posts tagged “diagnosis”

Teaming up with LupusChick to boost chronic condition awareness

Posted April 4th, 2017 by

PatientsLikeMe is excited to announce a new partnership with “LupusChick,” Marisa Zeppieri-Caruana. She’s an influential blogger, advocate and advisor for the lupus and chronic condition community – and an all-around cool gal. Marisa grew up with various health issues and suffered serious injuries in April 2001 when she was run over as a pedestrian by a truck, driven by a drunken driver. During her rehabilitation, she suffered a small stroke and was also diagnosed with lupus (which can be triggered by trauma, like accidents and injuries).

Marisa launched her LupusChick blog in 2008, and it’s now a popular destination for reflections on life with chronic illness, recipes (she’s a juicer and a foodie!), wellness tips and more. She’s been featured in U.S. News & World Report, The Huffington Post, The Mighty, Eating Well, Elle, Glamour, and many other publications as a voice for people with chronic illness. She raised even more awareness of lupus when she reigned as Mrs. New York USA Universal 2015. We recently caught up with her about her experiences with lupus, her award-winning blog and her hopes for this new partnership with PatientsLikeMe.

LupusChick Interview

What inspired you to launch LupusChick? Did you expect it would reach so many people and become your day job? 

Between 2005 to 2008, I met many lupus patients and their family members or spouses through support group and awareness events and was surprised at how many of these men and women still felt alone. I believed they were looking to find a solid connection with other patients. As social media and the internet was really beginning to take off, I created LupusChick as a safe space for patients dealing with any chronic illness. It started from a small blog, reaching a few hundred people a month, to today where it is a nonprofit and major autoimmune community that reaches about 700,000 people per month. I think of it as my day/night/weekend job, as people reach out from all across the globe at all hours. It is everything I hoped it would be and more!

Could you share some of your lupus diagnosis story with us? How did you come to terms with your diagnosis after already going through so much? 

I believe my story really started when I was young, as I had health issues since I was a baby. My symptoms came out full force, though, after being struck by a truck as a pedestrian. Some autoimmune symptoms are exposed through a trigger, and that incident seemed to be my trigger. I had to heal from that event as I had extensive injuries, and got sick on top of it. I can’t say it was my finest hour, but once I got through the frustration phase, I began to see that I was still here for a reason and I needed to transform all the “bad” into something good.

What do you like to do for fun? How has lupus affected these things? 
I love to travel, meet new people and just be spontaneous. Lupus has changed a lot of those things for me but it hasn’t broken my spirit. My travel is much more planned, and I have to strategize time for rest, but it doesn’t stop me from having new adventures in life.

Which lifestyle habits or changes have helped you the most in managing lupus? How do you help others find lifestyle tips and tweaks that might work for them? 

Changes I have made included learning how to say “no” and not overextending myself. At the end of the day, I am no good to anyone else if I have run myself ragged and put myself into a flare-up.

I’ve also made a variety of changes to my diet, as I deal with lupus and many allergy and food allergy issues. These changes have helped me manage some symptoms and have made an improvement in my energy level. I am always happy to share my tips with others, but I also recommend for people to find what works for them, especially when it comes to things like diet. One suggestion I do stress for chronic illness patients is journaling. Keeping track of my symptoms, food, stress, medicines, flares, activity levels and more provided incredible insight over time as to what causes my body to flare up.

Many people on PatientsLikeMe are managing invisible chronic conditions. What is the hardest part about managing a chronic illness that other people can’t see? 

The reality is many of us are almost putting on a show, attempting to seem healthy and “normal” in order not to be judged and critiqued by others who don’t understand our illness. That in itself can be exhausting. I think if some people had a glimpse of what our lives are like on a daily basis – the fatigue, pain, doctor visits, IV treatments, medicines, needing help – they might have a different perspective on chronic illness. It might foster more compassion and, in our community, that would be incredible.

LupusChick Interview

What does a tough day look like for you?

Tough days usually include fevers, pain, rashes, heart issues and severe fatigue. It can definitely get me down because I am a total Type A who has a million things I want to do. My mind never stops, but my body puts the brakes on many of my plans. There is a level of frustration that comes along with that. I try to keep in mind a new day is coming and remind myself that I have accomplished the things I have set my mind to, even if it has taken me longer than expected. That gives me hope for future goals.

What about a great day – what does that look like? 

A great day means a lot of energy, little medicine and no IV treatment. It might look like me, my husband and our rescue dog hiking in upstate New York or kayaking on Lake Ontario. Because so much of my life seems to be me stuck in bed, I love to get outdoors whenever possible!

What are you looking forward to most in this partnership with PatientsLikeMe?  

So many things, such as connecting with like-minded people, educating others about lupus (and various illnesses) and having the incredible resources of PatientsLikeMe at our fingertips to learn what has worked for other patients dealing with similar issues!

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Checking in with member Bev – “Laughter and comedy are still a huge part of my health management.”

Posted January 17th, 2017 by

Remember Bev (YumaBev), who we met back in 2012, after she’d just had deep brain stimulation (DBS) surgery? She told us about her blog Parkinson’s Humor and a book of stories from her blog, Parkinson’s Humor: Funny Stories about My Life with Parkinson’s. Well we recently caught up with her again to see how things have been going since we last spoke.

Check out the latest with Bev to see what she had to say about being an eternal optimist, connecting with other “Parkies” and the power of laughter.

It’s been a while (4 years) since we last caught up! How have things been going?

The last time we spoke, I had just had the first part of my DBS surgery. The surgery was an eventual success, but I had some minor complications. The skin on my scalp was so thin, it pulled apart where it was sutured. There was never any infection, but it did require several surgeries and a plastic surgeon to finally get my scalp to stay closed and heal properly. Right in the middle of all these scalp surgeries, I was diagnosed with breast cancer and the tumor was just below my DBS generator, so that made the cancer surgery a bit tricky. I also had a slight complication from the cancer surgery, in that the nerve in my right arm was pinched, so I had limited use of my right arm for about 6 months. Then my DBS settings were encroaching on the mood part of my brain, causing a severe depression. Needless to say, most of 2013 was definitely not a good year!!!

However, my scalp stayed closed and my hair grew back, my arm fixed itself, the cancer is gone (so far) and once my DBS settings were adjusted, the depression quickly disappeared.

Now my DBS settings are controlling almost all my Parkinson’s disease motor symptoms. I’m taking way less Parkinson’s disease medicines and I am back to sleeping 8 hours a night, which is something I hadn’t done in many years. Everything is about as good as it can be with Parkinson’s.

In your profile you mention that it took 8 years to get a diagnosis. Can you tell us a little about that journey?

My early Parkinson’s symptoms were not the typical resting tremor common in more elderly patients. The first symptom that sent me to a doctor was upper back pain near my shoulder blade/spine. I was referred to an orthopedist. Next came the inability to double click my computer mouse at work (more orthopedists.) Difficulty writing followed and then a tremor, but only when my hand was being used. (Think food flying off my fork and across the room.) After being x-rayed, CT-scanned and MRI’d, with everything coming back normal, I was finally referred to a neurologist. He diagnosed essential tremor (ET) and prescribed propranolol. This helped the tremor, but nothing else. My dad had been diagnosed with Parkinson’s the year before, so I asked if it could be Parkinson’s and was told, absolutely not. (Guess he was wrong.)

As my symptoms progressed, I confounded many more doctors, mostly general practitioners and more orthopedists. I even asked my dad’s neurologist if I might have Parkinson’s and he said, “Don’t waste my time, your problem isn’t neurological.” (Guess he was wrong, too.)

My symptoms kept slowly worsening, I needed help putting on a jacket and getting up from a chair. I startled very easily and had difficulty cutting my food. I was very stiff and rigid. My step-daughter, who I saw only once a year or so, was shocked at how much worse I was each visit.

Then my symptoms started progressing rapidly. I was losing the ability to do things daily. I needed help dressing. I could no longer drive. I had difficulty brushing my hair. I walked like I’d had a stroke and my right hand and arm were always curled. My GP was on maternity leave and not wanting to start over with a brand new GP, I took matters into my own hands. I KNEW it had to be neurological, everything else had been ruled out. I also knew it wasn’t ET because the tremors moved to my other arm.

I got a list of neurologists within 300 miles of where I lived, off a medical website. I typed a letter, detailing my medical history and symptoms, and started sending them out alphabetically. I’d send out about five, then wait to see if I heard back. Then I’d send more and wait. When I got to letter W, I almost gave up. But I sent the last few and waited. Dr. Zonis’ office manager called me, said they knew exactly what was wrong and had me come in the next day. They were right in the same town I now lived in, Yuma, AZ. He said Parkinson’s, gave me carbi/levodopa and five pills later, I could move again!

Now, to be fair, we moved around a lot, so the first neurologist I saw was in Colorado, my dad’s was in Florida, and the last one in Arizona. But MANY young onsets don’t have the same symptoms as elderly patients. Dr. Zonis was in his mid-60’s and I was the first young onset he’d ever seen in his practice.

In your last interview you talked about the power of laughter. What role does comedy play in your life now?

Laughter and comedy are still a huge part of my health management. Laughter stimulates your brain to produce more neurotransmitters, like dopamine, so it really is good medicine. And with no side effects! Well, you might pee your pants, but then you laugh at that, too.

You describe yourself as an eternal optimist – how has that influenced your experience with Parkinson’s?

Some people have optimistic tendencies, some have pessimistic ones. I think it is part of you, just like eye color or skin tone. I have always been optimistic, but I know what depression is like (from my DBS induced depression) and I can now empathize with people who feel depressed. It is awful, your whole body aches. You wake up feeling like you’ve been boxing all night with Mike Tyson. You have no hope and you feel down.

Everyone with Parkinson’s disease is different. We progress differently and have different symptoms, but I think my positive attitude explains why, after being symptomatic for 20+ years, I am doing so well.

What’s it been like connecting with others on PatientsLikeMe? Has it helped you manage your condition?

Connecting with others with Parkinson’s disease is essential to living well with the illness. Your doctor doesn’t have the time or knowledge to help you figure out how to live with Parkinson’s disease, they only know how to write prescriptions. People with Parkinson’s disease know the best local doctors, dentists, therapists and helpful tricks and are willing to share their life experiences. For example, replacing medicine bottle caps with the flip top ones that come on vitamin bottles. Parkies also can tell you if this symptom is common or if this side effect is dangerous.

 

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