14 posts from December, 2016

Meet Laura from the PatientsLikeMe Team of Advisors

Posted December 22nd, 2016 by

 

Say hello to Laura (thisdiva99), another member of your 2016-2017 Team of Advisors. Laura chatted with us about what it’s like to live with bipolar disorder and why she thinks it’s essential to find and connect with others who live with the same condition: “It is of the utmost importance to connect with other Bipolar Warriors. Mental illness can be very isolating.”

Laura also shared some details about her background as a professional opera singer. She’s performed all over the world and has even won a Grammy! Get to know Laura and read her advice for others who are living with chronic conditions.

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

Hearing the laughter of my husband, my nieces, and my nephews brings me ultimate joy.

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?

My greatest obstacle in living with bipolar disorder is having to pretend that I am “OK” all the time. People with mental illness often find that they must hide their symptoms, and live in a quiet kind of agony of the mind, so that their friends won’t leave them, or so that they can keep their jobs. Living with bipolar disorder means constantly proving to the world that I am capable and worthy, that I am more than a bag of symptoms I constantly try to keep behind my back. I have been pretending to be OK for so long now that sometimes I don’t know where the pretending ends and my true self begins. I believe that education is KEY in bringing an end to stigma. Speaking openly about something lessens the fear and misinformation surrounding that thing.

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

Bipolar disorder is an illness of opposites. I can go through weeks or months of crying constantly, sleeping all the time, and then escalate to feeling nothing at all. I want to die just so that the sadness and nothingness will stop. Then I swing up into mania, where I need very little sleep, I over-schedule myself and include myself in too many projects, and get more angry and frustrated. Eventually I want to smash everything around me, including my own head. When I’m lucky, I have brief periods of stability between depression and mania.

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

You are worthy of love. You are worthy of feeling better. You did nothing wrong. You do not “deserve this.” You are not being punished. You just need to work with your family, friends, and treaters to find love and peace in yourself again.

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

It is of the utmost importance to connect with other Bipolar Warriors. Mental illness can be very isolating. Even though I have many friends and family who want to help (and often do!), sometimes you just need to speak with someone who knows what the bipolar roller coaster is like.

Recount a time when you’ve had to advocate for yourself with your provider, caregiver, insurer, or someone else.

Not too long ago, I had to advocate for myself with my mother. My parents are my greatest allies and have been through everything with me. But my parents have also instilled in me the need to “pull myself together,” because “the show must go on” (we are a family of performers). Recently, my mother became exasperated with how I was feeling, and how I was reacting to my illness. I had to stop and tell her that even though I love her more than anything, bipolar disorder is not something that can be shoved to the side. It is not an illness that can be put in a box and left until it is more convenient. It infiltrates my brain every second of every day,  and I will never stop working with it, and trying to live with it. Advocacy is really just about education, and I think that that is something that we can do every day of our lives.

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

PatientsLikeMe has shown me that I am capable of far more than I truly believe. It is so incredible to me that while other members of the community deal with horrible circumstances throughout their day, they can still take the time to offer me comfort or encouragement if I need it. PatientsLikeMe reminds me that I am allowed to be vulnerable or fragile at times, but that does not define me. It is part of the greater scheme and strength of having a chronic illness.

What are three things that we would be surprised to know about you?

  1. I am a professional opera singer. I have performed all over the world, recorded film scores, sung backup for James Taylor, sung at Superbowls and Red Sox games, and I am a Grammy award winner.
  2. I started reading when I was three years old, and I never stopped! I love the written word…especially Victorian Literature.
  3. I am a total geek…I love all things Star Trek, Star Wars, Doctor Who, and on and on and on!

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

I love PatientsLikeMe, and I love helping people. When I was given the opportunity to combine those two things through the Team of Advisors, I jumped at the chance! It is so humbling and fulfilling when people bring you into their lives, and every encounter teaches me great lessons. My mother likes to say to me, “You have a big mouth; use it for good!” I hope that being a member of the Team of Advisors is doing just that.

 

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Member Susan shares about life with type 2 diabetes

Posted December 20th, 2016 by

Meet Susan (sugarpolicewoman) from Montgomery, Alabama. She loves birds, flowers and kittens and was diagnosed with type 2 diabetes over 40 years ago.

Check out her story to learn more about how she manages her condition while living in an assisted living facility.

Can you tell us a little about yourself? What are your passions?

I caught diabetes from my dad, who had diabetes, type 1.  I have type 2. I grew up in a Methodist preacher’s homes. We moved around an average of every four years, although my dad was a District Superintendent for six years once.  I had to switch schools quite a bit due to moving, therefore I never did develop close friendships, only casual acquaintances. We lived in several towns and cities in the state of South Carolina. When I was 14 years old, I caught chicken pox from my younger sister. The case was bad, probably because I had the pox later in life instead of during my younger years. When I had mumps, doctors still visited and treated sick people in the home. In front of me, my doctor told my mother I could have all the Coca-Cola I wanted. Unconsciously perhaps, that might have been the start of my diabetes.

I did not really discover diabetes until I was approximately 25 years old. Mercifully, I did not get sick during my college years. I have had my tonsils taken out, and also my spleen taken out because it was eating up my white blood vessels. I donated blood to the Red Cross one time, but that stopped when it was evident I had diabetes. I have loved books ever since they were read to me as a child, so quite naturally, I chose to be a librarian after college graduation where I majored in Library Science and minored in English. At first, I worked in a school library for one year, but working around teenagers just wasn’t for me. I worked a total of 40 years and 12 days as a federal employee in government libraries.

A favorite thing to do in junior high school and high school was reading books. One favorite time when I was a college student, I was playing softball during gym when my gym teacher had to play with us because there was not enough of us for 2 teams. I played left field, and caught her fly ball! I will never forget that! Now, during my “golden years,” I never seem to get enough time to be on my computer. I live in an assisted living facility, so the television is very welcome company! The computer is my main source for communication.

You were diagnosed over 40 years ago. Are there aspects of your condition that you still find challenging?

Diabetes can be a tricky disease. Management of my blood sugar levels has been very frustrating at times. Most the time, I know by hindsight what causes my sugar level to rise, but by then, my sugar has already risen. There is no easy way to manage blood sugar levels. You have to work hard. Other times, my sugar levels will bounce up and down like a yoyo. Once or twice, my sugar dropped low enough that I wound up in the emergency room. When the sugar level gets too low, you pass out. I was trying the wrong way to regulate my blood sugar level. The most recent challenge has been my fatigue. I feel really tired to the point that I just sit and watch television instead of doing my main daily job of putting clean clothes away. The fatigue is caused by high blood sugar. I recently discovered my dry mouth is also a symptom of high blood sugar. Thank goodness, I can solve this by drinking some cold ice water! Thinking about my husband’s declining health contributes and just adds to all the challenges.

In the forums you talk about managing your sugar in an assisted living facility where you have a restricted choice of food. Do you have any advice for others who might be in a similar situation?

The assisted living facility where I live has 24 residents in my building. There are four buildings or cottages on the campus. Meals are cooked and served to us in the dining room inside my cottage.  Meals are where the main challenge of managing my blood sugar levels becomes hard. I have very little choice of what to eat. We residents must choose if some of the foods on our plates are not diabetes friendly. Sometimes I have no choice but to eat pasta, bread, white rice or white potatoes if the menu is limited to very few items. My advice to other PatientsLikeMe members would be to do what I am trying to do. I try not to eat what I can do without. For example, if I can skip it, I avoid eating white rice or white potatoes because when these two foods get inside the body, they turn into sugar. Sugar is the diabetic’s enemy. Of course, I’d be forced to eat white rice if the cook mixes the rice with something else and creates a casserole for either lunch or dinner.

Has PatientsLikeMe has helped you manage your condition? What does it mean to you to donate your data?

When I post descriptive sentences about my condition or test results, this reminds me I must do something to improve the status of my condition. PatientsLikeMe helps me treat myself! If by donating this information about myself helps someone else, that would be wonderful!

 

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