27 posts in the category “Bipolar disorder”

Meet Lindsay from the PatientsLikeMe Team of Advisors

Posted February 9th, 2017 by

 

Meet Lindsay (Shyandspicy), a member of the PatientsLikeMe 2016-2017 Team of Advisors living with bipolar II, fibromyalgia and diabetes. We recently caught up with Lindsay to learn how she finds purpose in her relationships with her family, her faith and helping others. 

Keep reading to get to know her story and how she tackles the obstacles of living with her conditions through research, self-advocacy and connecting with others.

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

There used to be not much that could give me joy or even make me smile. Now I can say one of my biggest joys in life is bringing pride to God and my family and other supportive loved ones. I have put them through a lot of strife and knowing that they recognize my hard work and attempts at trying to correct the past and become a better version of me brings joy. Along with that, I get a smile on my face when I spend time with my son, who is 13 and my little sister, who is 30 years younger than me. Experiencing life again through their eyes has a whole new meaning!

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

Stigma and high functional ability are the greatest obstacles. Because people can’t physically notice all my diagnosed illnesses on a daily basis (bipolar II, fibromyalgia, diabetes and other mental health illness) due to me being so highly functional. I have been denied much-needed services such as disability and compassion among others because I can mask how severe I am at times due to societal expectations of being what is normal. Society needs to start to recognize that we all are different and experience some different type of hurts/traumas in our lives but some of us can’t recover as well from those things. That does not make us less than. Instead of shaming us for displaying a need for help, society needs to encourage and applaud the strength in getting help. It starts though with ourselves not feeling embarrassed about our illnesses, whatever they may be, then family and friends and hopefully society.

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

This is hard for me to answer because many of my conditions (diabetes, fibromyalgia, mental health illness) are not seen and overlap. The best way to describe I think is that I know I have the potential to do great things, but mentally, physically and emotionally I struggle so hard to achieve this. First, I constantly talk myself into waking up in the morning, moving around, taking medicine, getting dressed, eating, overcoming fears, slowing down on taking on the world, filling out paperwork, and other basic skills that people tend to take for granted. I am a high functioning person so I’ve adapted to societal ways, but physically I’m in constant pain, the kind where every joint, etc., feels like a train has hit me and nothing I can do takes it away. Mentally, I am in constant battle of trying to build myself up while tearing myself down, remember little tasks and trying not to be confused (because I am intelligent and it makes no sense that I can’t remember simple things anymore). Emotionally, I am constantly finding exits, bathrooms, etc. in case I have a “melt down” so I can do it in private. I act cold, inappropriate and ruin relationships because I misunderstand things emotionally. All because I don’t want to be a bother or appear weak.

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

Research, research and research. I am a big reader and nerd already, but the one thing that has helped me is knowing what I am talking about when I go into the doctor’s offices. They may not believe you because some doctors are not up on research, but at least I know what tests I should ask for, medicines I should try and treatments to seek. If you can’t get it from a certain doctor, be an advocate for yourself. Just because one doctor says one thing, doesn’t mean it is entirely true. You can always change doctors, hospitals, etc., I never understood that. Another thing is keep track of symptoms, changes, etc. It helps to know when your condition is getting worse or better.

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

Very important. Without finding PatientsLikeMe.com in April 2016, I think my life would have been very different at this point. This site has given me courage, comfort and belonging. That was my major piece missing in my recovery of self, a sense of belonging…and finding non-judgmental and understanding strangers who get it is rare. This site brings everyone together and then some!

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

I am always having to be a constant advocate for myself with doctors and my state funded insurance. It is SO frustrating and many times I want to give up, but I know no one else is going to do it and something needs to be done. Here is an ironic situation I run into a lot: I have applied for bariatric surgery 5 times. I’ve been denied 5 times due to mental stability, yet I need multiple test services, etc. and when I go to get the prior authorization, I am denied stating I need to just lose weight. Hmmm…interesting. You won’t pay for the surgery, you won’t pay for the coverage to get better sleep to lose weight, but will pay for me to see a doctor at least 5 times a week and 21+ pills a month. I also just had my 7th surgery on my knee. I am going to continue to fight because it makes no sense. Just because I have state insurance and I am overweight does not mean I should get unfair treatment.

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

Because of PatientsLikeMe, I have found a new desire to become a better patient and to be there for other people who are not aware that there is hope for their condition. I started on this site because I was tired of how I was being treated as a patient and I found hope on PatientsLikeMe and comfort with other members. It brought me out of my depression at the time. Any time I talk to someone, (and this was before I was on the Team of Advisors) I would tell them about this site because I felt it was just a great way to not feel alone anymore and to get knowledge. I’m able to cope better knowing that if I am having a bad day other people will be supportive and give well wishes or advice. That is so comforting when you are depressed…just knowing someone in this world cares.

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

I wanted to help other people like others have helped me on this site.

 

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Patients at work: Member Nancy on being her own boss

Posted January 10th, 2017 by

We recently launched a blog series about patients who’ve started (or are gearing up to launch) their own businesses, sparking a discussion around how to manage your health without giving up on your career goals.

Say hello to Nancy (@spicerna), who sat down with us to discuss how she finds a balance between living with bipolar I and expressing her creative side through her art. Nancy chatted with us about the kinds of projects she likes to work on, and why it’s important for her to be her own boss: “I need a job where I am the boss every day. There is an unpredictable nature about the illness…not a day that goes by to where I am not making judgment calls to maintain my health.”

Can you tell us a little about yourself and your diagnosis experience?

I have struggled with symptoms of Bipolar I, since I can remember. I really noticed the ups and downs in the teen years. And at age 16, I had my first psychotic break, (1 out of 5 breaks in my life.) I have always been an overachiever and had big dreams and goals for the future but the combination of everything that I needed to succeed broke me. My body and mind couldn’t handle it. There was never a balance of my life. I never took a break I was a workaholic. I slept just 3-4 hours a night most nights. I had as many successes, as I did years of crash and burn.  It was just hard for me to work a mainstream job. I can’t do deadlines very well, stress triggers Mania. I was in complete mania working a full-time job and going to school for 7 years of my life then in a complete depression for 8+ years as I worked each day to recapture my life. Since I had 5 times of extreme psychosis. It wears on your body. I just had to begin plans to do a 180*. I was choosing the path to the most resistant and not enjoying the ride along the way. There were many things that I was doing wrong. I needed the balance, peace of mind; love for myself and to not live in extremes.

I have a certificate in residential planning and I planned on having a career in kitchen and bath design but that is high stress and the 180* was to find that my hobbies and being an artist is more of a goal and where I should be headed now. If I could make that work and market it to make some income. Then I can kill two birds with one stone I could have my success and support myself and take care of my illness at the same time.

I need a job to where I am the boss every day there is an unpredictable nature about the illness there is not a day that goes by to where I am not making judgment calls to maintain my health. I have to take many brain breaks clear my mind. That gets in a way of a full time every day job.  So to work at my own pace is crucial. So I can work around my mind.

How did you first get into making art? What are some of your favorite projects?

I started cross-stitch at age 8 at the same age I would draw in 3rd grade floor plans of my favorite houses that we vacationed at. In high school I took drafting class. I was very into residential homes and design. Through school I loved anything design and art related and at age 12 I determined that would be my life goal, I wanted to get into homes and design the plans for them. Well that idea evolved and now the goal is to be an artist and create art for people’s lives. It took a long time to make that distinction. I guess that is part of the process of the journey.  My cross-stitch was an obsession growing up. I made over 45+ pictures most of them were gift to friends. By working with my hands and heart it was a release to use the needle and thread, very healing. Then after a while after I chased after my career for a while I realized that I wanted to get involved with other mediums so with no money for school I began to teach myself using YouTube for advice other mediums, to illustrate for cards and create paintings. Wherever my ambition will lead. I am interested in paper, wood and fabric. I am defiantly in the experimental stages, working on many different projects to see where that may lead.  Right now, I am drawing and gravitating towards architectural element and gardens.  The sky is the limit.

Where have you been able to sell your art so far? What are your plans for growing a business out of it in the future?

I was making and illustrating some cards for people around me I would go to market and sell my cards just for the experience and wow they sold like hotcakes and had some people pay $10 for one card and there were orders for batches of 12 cards for Christmas and finally I just got warn out with all the work and found better ways to market my cards. I have one idea to sell and make good money buy illustrating my cards then making copy’s at the printers then selling or making silhouettes on the Internet for Cameo cutting machine sell the rights to the company and then when people buy my silhouette on the web I get paid a percentage I liked that idea. All of this is going to take me a long while to manifest I am becoming an expert in my own field so I am gauging down the road. 

How does living with bipolar affect your creative process?

When I am in mania my mind is racing the world it is so much deeper and broader and I have so many ideas. I have so many ideas but there not concrete. On the meds I struggle with similar issues as in mania; plus to focus, concentration, comprehension, low energy. I do think clearer on the meds but the symptoms never go away. It takes much strength to break down and be in the mood to do art so I am surprised when I look over my work and see so much progress.  So maybe once a day do a little bit. It is hard when your mind is choreographing dance songs in my mind and you know how to make that happen but all the details of the work and learning everything to piece that together. I don’t have energy for that. But it goes through my mind. All I know I can do anything I set my mind too there is just isn’t enough time for it all in this lifetime. Sometimes I think that I have the illness to keep me down to earth instead of a balloon flying off into the universe I have so much internal power.

On the flip side, does the process of making art help your manage your health?

Art is passion: it is metaphysical and spiritual. It takes you places. Color, and creating: helps release your mind. It keeps me occupied, during this life we call on earth.  It take’s skill and the process of learning, growing and creating that specific look is a life long job so fascinating to find.

I can manage my health by getting to a place to where I feel at complete peace and feel like I am doing my calling in this world. I feel depressed and moody if I am not doing that. I need Art in my life.

Do you have any advice for others with chronic illnesses who wants to start their own creative businesses?

Do it for fun first for years then add the buying and selling part. That is what I am doing? I feel more prepared to sell my work that way. Do your research about the business end and start with small classes to help you understand the business world. Become and expert first and then the process will be less stress on you. Owning a Business is a risk and you want to do what you can to succeed.

Most of all love you and have some faith. There is power within your heart that is just waiting to break through. Believe in that every moment of every day. Love yourself first and foremost and love others around you. Give to them in increases the harmony. Don’t get trapped in the hole of oppression and burden, get out!! Then you can succeed in all area of life and be ready for your own business.

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