11 posts from January, 2017

Meet Hetlena from the PatientsLikeMe Team of Advisors

Posted January 31st, 2017 by

Say hello to Hetlena (@TheLupusLiar) from the 2016-2017 Team of Advisors. We recently caught up with Hetlena and she chatted with us about some of the challenges she faces living with lupus and why she won’t let it stop her: “Putting off your aspirations, dreams, and wants due to the fear of what an illness can do means you are standing still.”

Get to know Hetlena and read on to find out how she stays positive: “After living for a while, you begin to realize that you are only given one life, so why not live it to the best of your ability.

What gives you the greatest joy and puts a smile on your face?

What doesn’t give me the greatest joy? Not much. I do my best to find joy and appreciation in everything that I am exposed to because waking up to a new day is one of the greatest joys anyone can experience. I’ve always been a morning person, so the smile comes naturally. After living for a while, you begin to realize that you are only given one life, so why not live it to the best of your ability. (…And yes, I could do much better.)

What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?

Being diagnosed with lupus wasn’t the only problem, adjusting to the shift in what I can do and when I can do it is one of the greatest obstacles of living with this perplexing illness. There are so many days that I live in fear of being exposed of my weaknesses while trying to live up to others’ expectations. Being that I’ve willed myself to hold a full-time job while battling this disease, there are many times I secretly cower to the fact that I may not remember something, I may drop my coffee cup, lose control of my arms, or be out sick when I ‘shouldn’t’ have. I feel that society can handle a common cold, but not forever shifting sick days. Folks will say that they understand, but it’s my experience that many do not. I wish more of us —those diagnosed with lupus — were brave enough to not be coy about the unwilling position that lupus places us in. We are weakened by our feelings, our worries that others just do not understand how someone can be so well, so able at one moment of the day, then not functional the next.

How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like?

If I had to describe my condition to someone who isn’t living with it and doesn’t understand what it’s like, I’d have them first reserve a few days, maybe even a week or two, to be away from others. This is how this disease can feel, lonely, secluded, and strangely misunderstood. Lupus is an autoimmune disease in which the body’s immune system attacks normal, healthy cells and tissue. The body attacks itself. Lupus isn’t to the point where every doctor’s office has a brochure to give you when diagnosed. You’re told you have lupus, something not a lot of research has been done about, then you are asked to follow up in six weeks—if you have six weeks. This disease is scary, unpredictable, ridiculously confusing, but, thanks to many developments in the last ten years, better. How much better depends on the body. Since no two lupus patients are alike, my symptoms differ from others diagnosed. I am in constant pain. It’s continuous, yet varies at different times of the day. There are times when I’m overwhelmed with discomfort, confusion, anger, and depression. There are times when it all happens at the same time. These heightened times are known as flares, when the disease takes hold in a way that it cannot be controlled. The medicine usually changes with symptoms, thus the costs of doctor visits and medication is additionally horribly painful to the pocket. In retrospect, to understand the upheaval this disease persists upon in one’s life, you’d have to be diagnosed with it to truly comprehend what it’s like living with lupus.

If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?

During my 23 years of living with this disease, I’ve learned that self-monitoring is the first method of self-care that a person newly diagnosed with a chronic condition needs to practice. You cannot support your own successes without tracking your good days and bad days. Maintaining records on medications, symptoms and even your surroundings and feelings help make for a better you.

How important has it been to you to find other people with your condition who understand what you’re going through?

It is has been vital that I connect with others dealing with the same condition that I have. Because this disease is so complex and multi-faceted, it is helpful to communicate with other people with my condition. Those, like me, know firsthand how difficult managing this disease can be.

Recount a time when you’ve had to advocate for yourself.

For anyone living with a disease that changes almost as much as the weather, advocating for your health is not an easy task. Lupus flares do not always call before they stop by; so you end up visiting the emergency room more than you’d like to.

With this being said, there have often been times that I’ve had to insist on having an emergency room attending physician ‘check’ for certain vitals that they would normally have not taken or reviewed. When you are already weak, distorted, and out of sorts, as a patient, you are not taken seriously or seen as being a ‘complainer.’ This can be hurtful and annoying. This is why I keep a journal of my symptoms and other important medical information such as my current physician’s contact information and latest test results. Being able to quickly access this information and add to it, if necessary, allows me to advocate for my health and insure that I am taken care of in the best way possible, with the most accurate amount of information.

What made you want to join the PatientsLikeMe Team of Advisors?

It wasn’t that I just wanted to join the PatientsLikeMe Team of Advisors, I just HAD to join! There was no way that I would not have wanted to be a part of a team that helps others advocate for themselves in the most sensible and realistic way possible! PatientsLikeMe believes in the patient point of view to healthcare. How about that for an idea? We need our healthcare providers to know that we appreciate them, but we also need them to know the best way to care for us. That means being open, truthful and as informative as possible when it comes to relaying health information. PatientsLikeMe does just that! They give patients, like me, a voice. A voice that’s loud, clear, and monitored all at once. And, as a patient, this not only helps me, but allows my one voice to be an additional advocate for lupus healthcare awareness.

How has PatientsLikeMe (or other members of the PatientsLikeMe community) impacted how you cope with your condition?

Everyone needs a safe place of understanding, a nest of relief from feeling anxiety for being misunderstood. Being able to connect with others diagnosed with lupus is comforting. The PatientsLikeMe site provides this place to connect and more. Not only is the helpful health information always relevant and up-to-date, but my very own personal information assists me with my own care. I can look back at my information, target where a flare may have been triggered and get a more than typical perspective on my overall health.

What are you putting off out of fear from your condition?

You have to consider using and appreciating what you already have before you can begin to be happy. You have to do your best to not let the pain, depression, frustration and fear take over your mindset. Meditating and listening to yourself is one of the best ways to clear your mind and re-center. It doesn’t happen overnight, but it can happen. Putting off your aspirations, dreams, and wants due to the fear of what an illness can do means you are standing still. In order to get where you want to go, you have to move. And that means moving past the fear of what could happen into the path of what will happen.

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Meet Ginny from the PatientsLikeMe Team of Advisors

Posted January 26th, 2017 by

Say hello to Ginny (Mrslinkgetter), a case manager and family partner with Youth Mobile Crisis Intervention living with depression and epilepsy.  She’s also a member of the 2016-2017 Team of Advisors.

Check out what Ginny had to say about living with depression and epilepsy, the loss of her son, and how being her own advocate and the support of others helps her deal with stigma:

What gives you the greatest joy and puts a smile on your face?

My first greatest joy that puts a smile on my face is spending time with my granddaughter! (She is 2 and the cutest girl on the planet by my biased opinion!). My second greatest joy is connecting with people using either my journey with chronic health issues, or my son’s and being able to help them. I often edit my son’s story a bit if I believe the way his life ended might cause more harm to them, especially my clients.

What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?

People have pre-conceived ideas about depression, anxiety, and seizures and even when I try to inform them, they often bounce back to their former thinking. This causes, not just an obstacle, but sometimes a mountain between us. I have had people tell me they are “afraid of me” because of my seizures. They had been told my seizures are focal, not convulsive. I do not fall on the ground and shake, yet, they are afraid, WHY? Ignorance. I have had relatives who have shunned me due to the diagnosis, later in my life. I lost friends over the diagnosis of depression. I believe in speaking out about the conditions because I do believe we need to be the changers of the world. I know that it is an enormous task. One of my son’s epilepsy doctors was also one who had some big prejudice about the disorder. I went to him after my son’s death. He had told me that I had caused my son’s stigma. I had asked him for many years “How? How was it that I had caused kids to punch my son in the head and ask him to spaz out?” The doctor never answered me.

When we talked after Sam died I showed him the picture of Sam and Tony Coelho on a magazine cover. I asked him if he knew who that was. He did, and smiled. I told him that Tony had told Sam each year when we saw him, “Never be ashamed to talk about your epilepsy.” I told this doctor that Sam did become ashamed because the doctor told him to be ashamed. I told the doctor I believe it is up to us to change the world about how they view those of us who have epilepsy. I treated Sam no differently as I treated my father who had diabetes as I grew up. He had a medical condition over which he had no control. This specialist then nodded his head agreeing with me.

I speak to people to let them know these conditions are medical. They need treatment like a heart condition, asthma, diabetes. It is time they are not suppressed, made to be ignored, or thought shameful.

How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like?

My depression can ease up on me like someone adding weight until I cannot carry it any longer by myself. Suddenly I realize I am crying more easily for little reason. I cannot do simple tasks that used to come easily. I thought I was doing well, but have slid back into depression. This is not the same as “sadness.” I want to stay in bed, but no amount of extra sleep is enough. Concentration can become more difficult. I can be grouchier.

When my I miss my seizure medications or have long migraines, I have focal seizures. I can sense a prodrome (aura) when a seizure is coming on. My brain is just not working right during that time. My words are not able to form right or come out correctly. This can happen with both my seizures and when I have a bad migraine coming on so I try to get home to be safe. I have a long warning time, typically. During the seizure my head can feel too heavy for my neck. I am not able to talk but I can sometimes hear what is going on around me. I can have tingling in my face and hands. I will usually sleep after. Even after I wake up I am groggy and my brain is not working at full capacity. Sometimes my vision will “white out” and l have been known to send e-mail during that time that make no sense. Apparently I kept typing even though I was in a seizure. Fortunately it was to a family member who I could explain what happened!

If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?

Become informed in your condition as much as you are comfortable with from reputable sources. Find a good support network whether it is family, a support group, faith group or whatever you can form. You will do better with support around you.

How important has it been to you to find other people with your condition who understand what you’re going through?

It has been vital to me to find people who understood what I was going through! When my son was first diagnosed, I was not on the internet so it took a while for us to connect with others. When I did it felt like a miracle! Once I connected I have wanted to stay connected. When I was diagnosed a few years later I needed to speak to people about my own connection. These have been my friends for so many years!

Recount a time when you’ve had to advocate for yourself. 

I have found a medication that would be better for me as I went into menopause. I had been at the American Epilepsy Society Meetings and learned about this new medication. I called my epilepsy doctor when I returned. She was pleased to hear about the medication and was more than willing to try this for me. It gave me a return to better seizure control. My doctor is very open to what information I have for her. I have had to fight insurance companies many times for my care and for my son’s care.

What made you want to join the PatientsLikeMe Team of Advisors?

I want to be able to impact others who have chronic health conditions in a positive way. I know that the online community was what got me through years with Sam. Sharing my experiences and passing it along to others my assist them in their journey.

 

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