I talk honestly and openly about my experiences with mental illness, fibromyalgia, and chronic fatigue syndrome through the lens of feminism, fat acceptance and process theology. I also do recipe and book reviews. My mission is to spread the message that hope is always real for a better life, despite living in a world that is often very harsh.

Sunday, April 28, 2013

HAWMC Day 27 - The Name Game

If I turned my blog into a book, what would the title be?  Well, that's easy-Hope Is Real!  Hopefully, one day that book will be a reality.  The first step to doing that, I think, is to have my own webpage, instead of using the Blogger platform.  So far, I don't have any plans for next Saturday, so unless something really great comes up I am making that day my work on a webpage day.  I'm excited and skeptical at the same time.  People say that it's pretty easy converting a blog from one platform to another, but I've written over five hundred posts!  Egads!  Whether converting those files from this source to another, or trying to determine which ones to include in a book, the number is a little daunting.  So, I'm trying not to think about it.  No sense in worrying about it before I've even started researching how to do it in the first place!

While the title for my book is exceedingly obvious, it does remind me about a title I once gave to a story I wrote that is sort of embarrassing for me to admit.  When I was in RVI's outpatient program two years ago, I had to write and tell my life story.   The title I came up with for my life story was "The Girl Who Never Stopped Screaming and Crying."  Oh my God, is that not the most melodramatic title you've ever heard?  I am so embarrassed; I just want to run and hide! 

There is a reason why I gave it that name though.  At the time, I saw my story as a series of events where I desperately cried out for help with my condition, but nobody ever responded appropriately.  And in some instances, that was true.  I think of the time during my middle school years when I informed my youth minister that I sometimes thought of killing myself and all she did was tell me that if I ever thought of that again, then I should call her. 
***That was not the right thing to do!!!!***  She should have told my parents.  Of course, if you had asked me then if I wanted her to tell my parents what I had said, I would have said no, but that's only what I would have said with my mouth-inside, I desperately wanted my parents to do something.  If she had told my parents, they would have tried to get me help much sooner and perhaps I would have been spared years of suffering.  But perhaps not-it's no use thinking about what could have been.  Which takes me back to the title of my life story-while it is true that there were times when I cried out for help and not enough help was given, it is also true that I very rarely asked directly for help.   On the one hand, I did not know how and it would be really wonderful if we had workshops where we taught young people how to ask for help and if we could de-stigmatize mental health treatment.  BUT we live in reality and in reality, I never actually asked for help.  In fact, I actively strove to hide my eating disorder, depression, anxiety, and suicidal thoughts.  I don't say this to shame myself, but just to remind myself that I need to take responsibility for my recovery.  Two years ago, I looked at my life through the eyes of a victim.  I was a victim crying and shouting desperately for help, but now that I have more coping skills and a better support network, I realize that I no longer want to identify as a victim.  If I were to present my life story again, I wouldn't change much, but I would change the title.  What would it be?  I think a great name would be My Journey to a Life Worth Living.  In fact, that so happens to be the title of an article I wrote to psyweb.com about my recovery!  I got contacted by that website to write my recovery story and I am proud to offer the first part here.  I'll let you know when the second part is published.

I'm interested in knowing-what would you title your own autobiography?

Thursday, April 25, 2013

HAMWC Day 23 - Why I Love Social Media and My Ideal App

Yes, I am going out of order again!  I am not liking most of the prompts as well as I did last year, nor do I have as much time as then either.  Oh, well.  Day 23 is all about social media and technology.  First, what would my life be like without social media?  I know when I started using social media-in 2007, when I first started going to Georgia College and State University for a degree in music therapy.  Everyone was using Facebook to keep in touch with people and I had been so out of it that I didn't even really know what Facebook was!  That's probably because the students and classes at my previous college, Georgia State University, were not so nearly connected.  GSU is huge, in the middle of Atlanta, and for the most part people just go to class-the campus is too big and too urban for a lot of socializing.  I suppose that might have been different if I had joined a sorority or a club, but I joined social groups that were not geared towards college students, like my church and Lips Down on Dixie (the local Rocky Horror Picture Show group).  At GCSU, the atmosphere was completely different.  If you wanted someone to contact you, you would just say, "Facebook me!"  So many people were on Facebook that I realized that I needed to join or I would be ostracized.  I got a friend to help me figure out MySpace and Facebook and I have been busy in the social media world ever since.  MySpace is now obsolete, but I still obsessively check Facebook every day and I promote my blog also on Twitter, Tumblr and Google +.

What would my life be without social media sites?  I would feel a lot less connected.  Through MySpace, I found a bunch of old friends from Berry College that I had lost touch with and it felt wonderful to see them again.  It still does.  MySpace let me reconnect with my best friend from Berry College and that surely is a blessing.  We had both needed to take a break from each other for a while as we sorted out and healed from our own pain and it is a joy to have her back in my life again.  We are both much happier people now and even though we live several hours away, we try to see each at least several times a year.  In fact, we are going to get together in about a month for my birthday celebration.  Through Facebook, I have continued to keep in touch with old friends and I have even made some new ones that even though I have never met them face to face, they are people who are still very dear to me.  Like I talked about in my last post, seeing different people being vocal in supporting LGBTQI rights or mental health rights - I belong to several mental health groups on FB - even if it's just in posting a rainbow, an equality sign or the NAMI logo, helps me feel more empowered and less alone.

Now if I could design an app that would help me keep track of my condition?  I have a great idea and if anyone reads of my idea and then wants to make it, be sure to send some of the money my way!  I would like a medication tracker app, where you could list all the medication that you've previously taken, why you took them, and why you don't take them anymore.  And then when you're put on a new medication, you log in the dosage and the reason for taking it.  Your app would put the info on a chart and there would be space to write down if you think the medication is actually working in the way that it should and what kind of side effects you are experiencing.  (Each time you would enter in a medication's name, the app would automatically link it to a page that would list all the possible side effects and their probabilities, as well as the medication's purpose.)  This would be a great tool for the consumer to share with their doctor.  By tracking your medication's impact on a regular basis, you would have a much more accurate picture of whether the medication is actually beneficial or not.  Using an app like this would have really helped me communicate with my doctors better and it would have prevented so much grief.  There have been several times where I have forgotten why I stopped taking a certain med a few years ago, only to rediscover why when I try it again and then experience unbearable side effects.  This app would be great for anyone who has a condition that requires multiple medications, but especially for those with mental illness, because so often finding the right psychotropic medication is trial and error.  Many people with mental illness have tried dozens of different kinds of meds before figuring out what really works-I know I have!  Of course, I could just make my own chart, but it would be so much easier and fun to use if there was an app that I could download to my smartphone.

Here is a crude example:
Week of 4/21/13
Monday
Tuesday
Wednesday
Thursday
Friday
Saturday
Sunday
Cymbalta
Headache
n/a
migraine
Less depressed, but had a headache
Zyprexa
Gained .5lb
Inderal
Lethargic
Dizzy
Wouldn't that be handy? Ok, so I obviously could keep up with a homemade chart now, but it would be so much more convenient and fun if it was in a super cool app! Where would you be without social media? Do you have any ideas for a healthcare app?

Recommended Links:


There is adversity aplenty just moving from one day to another. The idea that the best work can come out of adversity is tantamount to telling me not to take my meds or advising someone who needs oxygen to leave their tank at home.
You Are Not Alone

In this culture you are not a person with an illness, when it comes to mental illness, you are the illness.  Do you ever hear anyone say “that cancer person”? But you do hear “that mentally ill person.”

Monday, April 22, 2013

HAWMC Day 22 - Simple Pleasures

Day 22 asks me what simple things give me pleasure, inspiration, and support for my condition.  I can think of many things!  Just this morning, I felt inspired by seeing the red equality signs all over facebook.
In support of the gay marriage rights cases going on in the Supreme Court, many people, including myself, have replace their regular profile with this red equality sign.  It's such a simple thing, but it really does help me feel less alone. Approximately 5% of my facebook friends are using this sign as their profile picture and while that is a small number, it is enough to offer me comfort and solace.  Feeling not isolated and alone goes a long way towards creating good mental health and it also reminds me of how wonderful I felt the first time I didn't feel alone in my diagnosis.  It happened for the first time in 2005 when I attended Skyland Trail for eight months.  I was diagnosed with schizoaffective disorder at the time and I felt very alone and embarrassed, because I had never met anyone with my condition before.  At Skyland Trail I met many individuals with schizoaffective disorder and we would talk about our shared difficulties.  It was so wonderful to be able to talk with another person who absolutely understood what I was experiencing!  The second time I had that experience was when I took the dialectical behavior therapy class (DBT) class last year.  DBT was designed specifically to help those who have borderline personality disorder (BPD) and the class I took had a mix of people who did and did not have it.  Once again, it was incredibly validating to be learning coping skills with other people who struggled in the same way that I did.  We didn't glamorize our problems or our negative coping mechanisms, but we offered each other support and praise when talking about a current problem or a current victory. 
 
This prompt is also timely, because I just finished talking with my therapist about how I've had a lot of little victories lately that while they may seem insignificant to the average person, are actually very significant to me. 
 
Here are some of them:
 
1.  The major mental health website, Psyweb.com, contacted me about featuring my blog in their "blogs" section and to feature my "recovery story" in their "articles" section.  I wrote my story down, sent them a link to Hope is Real!, a profile picture to use, and a short bio.  I am very excited about getting this extra exposure and it really validates all the time and work that I have put into this blog.  I'll be sure to let you know when my writing is added!
 
2.  I got invited to attend a fair trade luncheon this weekend for free as long as I write about it on my blog.   Why would I turn down free food?!  Even though this is not a fair trade focused blog, it is indeed something that I very much support and it feels nice to be asked to write about it. 
 
3.  Even better than these two things is the fact that I have had continuous energy for about a whole month!  I can't remember a time when that has happened before!  It used to be that the most I could hope for was about four days of productive energy in a row, but with the Spring weather, the decrease in my medications, and my new, more positive outlook on life I have now had many days where I did not need a nap and have been able to be productive all day long.  This is a major accomplishment!!!
 
4.  This one may be the victory that seems the smallest, but may well be the largest, is the fact that I have been able to keep my room clean for about a month too.  Ever since I first experienced depression in my teens, I have never been able to keep my room clean for more than a week at a time.  I worried that I was incredibly lazy or even that I had some kind of processing disability that prevented me from knowing how to clean my room.  Now that I have more energy and am not depressed, I have come to understand just how awful anxiety and depression is.  Anxiety and extreme fatigue made me feel overwhelmed at the thought of doing just about anything-even getting out of bed in the morning was tortuous!  To be able to clean my room was to possess an amount of energy that I just did not possess.  Now that I have more energy, I no longer feel overwhelmed by the thought of maintaining a clean space.  This gives me hope for the future, because one of the concerns my family has had was that I would not be able to keep my apartment clean enough if I lived on my own.  If this increase in energy continues, then that worry may be a thing of the past and that feels incredibly good!
 
5.  Lastly, the sun is out and Spring is here.  Words cannot express how much feeling the sunshine and seeing the flowers bloom helps me.  Spring wakens me and provides me energy.   It lifts my spirits.  I feel energetic and joyful-my therapist told me today that I looked "light and airy" and for the most part, I do.  Blessed be!
 
What simple things provide you with inspiration and what small victories have you accomplished lately?  Let me know!

Sunday, April 21, 2013

March 2013 Book Reviews


The Next Full Moon by Carolyn Turgeon – Carolyn Turgeon is one of my newest favorite novelists.  I first read her book, Mermaid, and absolutely loved it.  Turgeon is known for adding more depth and complexity to already known fairy tales-this book is a take off the lesser known swan maiden fairy tales.  Unlike her other books, this is a book for preteens, but it is still worth a read.  There is a lot of boy crazy dialogue, which usually annoys me in a book, but perhaps because this book was so well written, I didn’t mind it at all.  My only complaint about the book was that it was way too short!  I felt like there were many details that I would have loved to see fleshed out more fully and the ending definitely left me wanting more.  The story was beautiful, but it felt incomplete and I am hoping that Turgeon purposely wrote it that way so that she could follow it up with a sequel.  In fact, if she doesn’t come out with one soon, I may have to write her telling her to finish letting her readers know what happened to Ava, the main character!  I recommend this book to preteen and teen girls, as well as adults.

Evidence by Mary Oliver – Speaking of new favorites, Mary Oliver is one of my newest favorite poets.  I was introduced to her at my church, because sometimes my minister will read some of her poems before the sermon.  In fact, I have heard that many progressive ministers incorporate Oliver’s poetry into the service.  Her poems tend to be about spirituality and nature, but her language is not so lofty as to be off putting. In fact, I would say her use of language is very calming and comforting.   I copied many of her passages into my inspirational quotes book. 
The Dovekeepers by Alice Hoffman - This was the book my feminist book club picked out and I am glad they did!  Even though it is over five hundred pages, I read it very quickly, because I was so absorbed in the story.  The book is about the four women who take care of the doves in the Jewish settlement at Masada.  The true story about Masada is very well known-the Romans built a huge ramp to access the city, but when they got there almost everyone had already killed themselves-only two women and five children remained.  The book is divided into four parts, each part told by the point of view of one of the dovekeepers.  All of the women are strong, likeable characters and it was terrible knowing that two of them were going to die, although it certainly kept me reading the book to see who would make it out alive.  Many of the details in the book are based on artifacts that have been found in the area, which made the novel even more intriguing to me.  Besides a riveting story, Hoffman’s language is absolutely beautiful, reminiscent of poetry.  I heartily recommend this book-it’s not nearly as depressing as it sounds and it actually ends on a very uplifting note, in my opinion.  I have heard that Hoffman’s other novels are also beautifully written and so she is another author that I want to read more of.

Currently Reading


The Picture of Dorian Gray by Oscar Wilde

Tuesday, April 16, 2013

HAWMC Day 11 - My New Favorite App - DBT911

Ok, so I am now going out of order in using the prompts, but I am too excited about a new app that my therapist told me about to do the prompt for today.  Day 11 asks me what is my favorite health smartphone app and the answer is absolutely DBT911.  It's available for both the Android and the Iphone.  My therapist recommended that I use this app when I told her that I was disappointed that when I got triggered during my vacation a few weeks ago, I couldn't remember a lot of my DBT coping skills and so I acted out.  I didn't act out as badly as I would have in the past, but still I felt pretty disappointed in myself.  The app takes you to a page where you can access information on mindfulness, distress tolerance, relationship skills, emotion regulation, and validation.  The sections, of course, don't hold as much information as your workbook probably does, but they have enough to refresh your memory.  My favorite part of the app is the "Crisis List," where you can list all of the possible coping skills that will help you in an emotional crisis.  You can even then change the order of your list, so that it reads exactly in the way that will be the most helpful for you.  Here is my Crisis List as an example:
  • Call my sponsor.
  • Call my therapist.
  • Call my best friend.
  • Talk to my mom. 
  • Take Vistaril (my PRN for anxiety).
  • Pray.
  • Color.
  • Journal.
  • Paint.
  • Write poetry.
  • Listen to my favorite station on Pandora.
  • Read my inspirational quote book.
  • Take a bubble bath.
  • Brew a cup of hot tea.
  • Surf the web.
  • Eat some chocolate.
  • Cuddle with my cat, Arlo.
  • Fantasize about something positive, instead of dwelling on the negative.
  • Make a pros/con list about acting out.
Isn't it cool how personal you can make it?  Now that I have made this list, I no longer feel disappointed in myself, but empowered, because I am being proactive in my recovery.  Now there are no more excuses for me acting out.  (Except for if my cell phone is not charged up or if I leave it at home, but basically, my excuses are gone.)  Before having this app, I would get triggered and wish that I had my DBT binder with me or that I had a better memory or that I had a DBT self-soothing kit nearby, but I never did.  I mean, who is going to bring their DBT binder or workbook with them everywhere they go?  And who has a perfect memory, especially when they are triggered?  This list is perfect, because I am almost always going to have my phone with me and so no matter where I am, I will always be able to access ideas for possible coping skills, plus other Dialectical Behavior Therapy knowledge that might help me have a better day.  I almost feel like I want to be triggered, so that I can whip out my phone and see if the app really helps!  In reality, I know better than to wish for myself to be in an emotional crisis, but I do feel much less anxious and worried about the next time I face a difficult situation.  This app has really helped me feel both at peace within myself and excited about being in recovery.  Let me know in the comments below if you download this app and if it works for you.  Feel free to share your own favorite healthcare app too!

Sunday, April 14, 2013

HAWMC Day 13 - Two Acrostic Poems


I was trying to be a faithful "health activist" and do a post every day, but I've been too tired at night lately to do so.  The warm Spring weather and a decrease in some of my medications has meant that I am much more energetic and I haven't even needed to take naps anymore, which is both wonderful and weird.  Unfortunately, it means that I get tired a lot earlier than I used to and so I'm back to doing the posts whenever I can.

Today's prompt was to write an acrostic about my condition.  An acrostic is a type of poem where the first letter in each line spells out a word and each line describes the word.  I put my own twist on it though and used the letters to form a sentence that makes some kind of point about mental illness.  It was a fun project and probably my favorite one so far.

Mental Illness

Mental,
Evil,
Nutty,
Touched in the head,
Absurd,
Looney -

Ignorance
Looks
Like
Not
Enough
Social
Services.
____________________________________________
Borderline

Brings
Out
Really
Dangerous
Emotions -
Rage,
Loneliness,
Isolation,
Numbness (and)
Emptiness.

OK, so isolation isn't really an emotion, but that's poetic license, right?  I hope you enjoyed these poems.  If you want, leave your own acrostic about your own diagnosis in the comments!

Sunday, April 7, 2013

HAWMC Day 7 - That's Ridiculous!

What is the most ridiculous thing that I have ever heard about one of my conditions? Well, I've heard a lot of bizarre things, but I think the worst thing was when I got an email in 2010 from a friend saying that the reason why fibromyalgia is more prevalent in women is because women are stressed out by not having men take care of them anymore. What?!!! I wrote a response to it then and I thought my response was pretty good, so I am just going to repost it below:

 A few weeks ago, I received an off-the-wall email from a friend. It was an invitation to see a speaker about fibromyalgia. Okay, so far, so good. My interest was peaked, but then I continued reading and was both amused and outraged-this speaker blames fibromyalgia on men's inability to properly care for womyn. Puh-lease! *sigh* I wish I had kept the invite, so I could have quoted it, but I was too disgusted to keep it.

Scientists do not really know the cause of fibromyalgia, which means that people can invent all kinds of wild reasons for the disease. Now I am not a doctor, but I know that my disease is not caused by man's inability to properly care for me. Why? Men simply are not that important! As Howard Thurman wrote in his book, Jesus and the Disinherited, "A man is a man, no more, no less. The awareness of this fact marks the supreme moment of human dignity" (73). I firmly believe we all have power, but no man has power over me and when that lecturer tries to give men that much influence, he is trying to take away some of my human dignity.

Now I do believe that there is some connection between fibromyalgia and stress. From listening to other people who have it, it seems that the disease usually comes at a time when the person is under a great deal of stress and this was true in my case too. It is proven that stress lowers a person's immune system, so this is not a stretch. Many people get illnesses of all kinds when they are full of stress.

It is also true that there are more women than men who have fibromyalgia and I do not know what to make of that, but that one fact does not automatically mean that it is men's fault that some women have it. That assertion is simply ridiculous!

I remember the invite said that the speaker thinks women have fibromyalgia, because of the stress of men not providing enough for women. This statement offends me to the core and it is just another example of patriarchial bullshit. It is not that I do not think we need each other, we do. People need people in order to survive, but I do not believe that there is one group of people who needs to care for womyn more than another. There are all kinds of communities of people who care for each other. What I take the most offense is it is the language of domination. It is not men who need to take care of womyn, but rather it is people that need to take care of people. I am not interested in someone solely taking care of me, but in being in a relationship where people take care of each other. I am interested in reciprocity.
**************
What is the weirdest, most ridiculous thing you've ever heard about your condition?

HAWMC Day 6 - Dear Mental Illness


Dear Mental Illness,

Thank you for teaching me compassion towards others.  Thank you for making me realize that my purpose in life is to help others and provide hope that a fulfilling life is possible despite you.  Thank you for showing me my strength and courage and persistence.  Thank you for providing me the need to meet supportive and loving beacons of light, such as my current therapist and my sponsor.  Thank you for teaching me how to be vulnerable and granting me humility.  Thank you for teaching me how to trust others.  Thank you for forcing me to realize that superficial things like careers, money, and degrees do not define my worth.  There are many people who will never have the opportunity to realize this and so will go through life always trying to prove themselves.  I am a child of Godde, full of compassion and goodness-that alone proves that I am enough.  We all are and yet so few people really know it. 

There have been times when I have hated and resented you.  There are still times when every ounce of me is filled with bitterness because of you.  I think of opportunities lost and the fact that my life is not what I dreamed of as a child.  Even today I cried, because I felt like you severely restrict what I can do.  But I do not want to hate or resent you anymore.  Today I am calling for a truce between us.  I don’t know if we can ever become friends, but I am hoping that we can be partners in this life.  I realize now that your power depends on my attitude-when I wallow in self-pity, then you become a horrible monster, tempting me to take my own life, but when I have an open heart and mind, then I realize that you are a great teacher.  You have forced me to learn how to listen to and respect my body.  When my emotions start to feel overwhelming, I know to self-soothe.  Because I am in recovery from an eating disorder, I probably eat healthier than the average person.  Because I do not want to spiral into another manic episode, I go to sleep at a reasonable time.  Because I do not want to act out when I feel stressed anymore, I call people and let people support me. 

Mental illness, you do not define me, but you are a part of me.  A person cannot accept me without accepting the fact that I have a disability.  I don’t want to fight you anymore.  I don’t want to be bitter or resentful anymore.  I know that this change of heart will be a lifelong process, but it is one I am ready to start.  Continue to teach me the ways of vulnerability, compassion, humility, and trust.  In return, I will teach others that hope is always real and that even with mental illness by my side, a life worth living is always possible.

Sincerely, K.C.Jones
**********************
It was hard writing this honestly tonight, but such was the prompt for today-I either had to write a letter to myself in the future or a letter to my health condition.  In the past, a letter to my mental illness would have been filled with hate and bitterness.  I would not have called for a truce at all, but would have invited my mental illness to a fight.  That perception helped me for a long time, especially in dealing with my past eating disorder, but it does not serve me as well anymore.  I am a person that believes in non violence and I have come to the conclusion that it is no good to say that I am nonviolent if I then wish violence upon myself.  I am not my mental illness, but my mental illness is a part of me and so, at least on my good days, I strive to live in harmony with my mental illness instead of fighting it.  I think this is a more healthy approach, but I am aware that it is not a popular approach.  We live in an extremely violent society where we are taught to hate ourselves, especially if we have something like a disability.  It is a radical act to say that I embrace all of my me, even the parts that make me less than in the eyes of our society.  I hope that this post caused you to think about mental illness in a new way.  

Saturday, April 6, 2013

HAWMC Day 5 - Aspirations

Today's prompt asks me to share my blogging aspirations and my highest aspiration as a health activist.  This is a great question!  I suppose any blogger that writes about hope should have aspirations for her blog and I do.  This year, I want to take my blogging more seriously.  I want to become my own website, instead of using a free platform, because I think that will be more professional.  I want to keep on writing more often and my big goal is to self publish a book with entries from my blog.  It would have pictures, poems, recipes, and a list of resources.  Several people have mentioned to me that they think it's time that I expand my blog.  I really want to write the book and it wouldn't be that incredibly difficult, because most of the writing is already written.  On one hand, I feel really intimidated by the thought of self-published, but on the other, I think it would be really rewarding.  Writing a book is something I've always wanted to do.  I have other book ideas in mind and I think if I published something, then that would give me the momentum I need to work on my other ideas.  Plus, I recently became friends with a woman who is self-published and she said she would be happy to help me.  I feel like meeting her is sort of a sign that I am ready to take this step.  I definitely know that I want the book to be available in electronic form and in hard copy.  Why?  Because there is nothing more satisfying than holding a new book in your hands!

My big health activist dream is to create a feminist mental health center.  I think that would be absolutely wonderful.  Diet talk, self deprecating talk, and excuses would not be allowed.  We would hold all kinds of classes-some would be intellectual-I would offer classes on how the patriarchy and society's expectations damage us and how we can combat that (like learning to not base our self worth on pleasing men or the patriarchy), because knowledge is power.  I would offer Dialectical Behavior Therapy, Cognitive Behavior Therapy, family therapy and individual therapy.  I would make sure that my staff was diverse, representing people of different races, sexualities, and backgrounds.  We would have tons of support groups, some for purely mental or addictive issues and some to provide support for people who are trans, queer, of color, those who deal with chronic pain, trauma survivors.  I would have a fat acceptance group.  There would be groups to help those with eating disorders and there would be an eating disorders nutritionist.  We would have social groups too.  We would have clubs that would help people become more social and develop more friendships.  If someone was doing well in their recovery then we would let them lead their own club based on their interests.  We would have music, art, and recreation therapy, and a feminist library.  We would offer self-defense classes and workshops on female and other minority empowerment.  We would offer avenues for people to become involved in advocacy and we would make sure that our clients had many opportunities to offer their input and develop leadership skills.  There would be cooking classes and practical classes on how to take care of yourself, building up skills like balancing a checkbook, how to save money, how to interview for a job, etc.  While many of these services would require some kind of fee and registration-the fee would definitely be on a sliding scale-most of the support groups and clubs would be open to the public.  In that way, even when a person left the program, they could still get support by continuing to attend the support groups and clubs.  (Free aftercare has been a majorly important part of my own recovery, so I know for a fact that this is important.)  There would be 12-step group of all kinds for both consumers and families.  Families would be very strongly encouraged to go, because it is never only the patient with the problems.  There would be classes on how to get in touch with one's spirituality if one wants.  Yoga and meditation would be offered.  Writing my big dream out is painful, because I want it so badly.  To me, my idealistic feminist mental health center is close to heaven.  The problem is I have no earthly idea how to get even a little bit of this started.  It's a wonderful dream I have, but I am afraid that it is totally impossible.  Not without a lot of help and support.  If anyone has any ideas on how to make this dream a reality, let me know.

So here are my goals and dreams.  The first part is practical and doable-the second, probably not so much.  I feel like the second is so big that there is no way that it could ever happen, especially by someone like me, who is poor and disabled, but I figure the first step is to say what I want out loud.  The rest can happen later.

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Actually, what really gets me is when you speak up for the marginalized, and the general response from some is something like, “Why did they invite that kind of treatment?” I’m beginning to wonder if human beings can’t help blaming the victims of this world.

Thursday, April 4, 2013

HAWMC Day 4 - Mental Health Resources

Today I will share with you a list of resources for the person that is starting out in recovery.  Some of these sites can be found on my blogroll.

General Mental Health

NAMI - The National Alliance on Mental Illness has a fabulous website.  It provides information about all kinds of mental illnesses, a support group locator for both consumers and family members and friends, advocacy skills, and articles about new research and treatments for mental illness.  I often link to it in my posts.

Eating Disorders

NEDA - National Eating Disorders Awareness provides online screening for eating disorders, general information about eating disorders and helpful articles and tips about being in recovery.  NEDA is based in New York and offers support groups if you live nearby.

Something Fishy - This site offers information about the signs and symptoms of an eating disorder, eating disorder news, and has a treatment finder tool.

EDA - Eating Disorders Anonymous is a 12-step program to help people recover from an eating disorder.  Its motto is eating food in moderation, not abstinence, which I like.  (I think eating all things in moderation is a much healthier goal than Overeater's Anonymous', which calls for abstinence from snacking and certain other foods.  I find that very triggering and unhelpful, especially since standard treatment for any eating disorder, including binge eating disorder, includes having two to three snacks a day.  Hence, I will not provide the link to O.A.)  The website provides a meeting locator and information on how to start a meeting.  There are also a lot of recovery stories providing hope and all of their literature is available to be printed out, which they encourage you to do freely.  You can even print out their whole EDA Recovery Workbook.  I really like their organization-I just wish there were more meetings available!  I have thought about starting my own, but I don't think I'm ready for that big a commitment.

EDIN - The Eating Disorders Information Network is an Atlanta based organization that offers information about eating disorders and a list of resources in the Atlanta area and across the nation.

ANAD - The National Association of Anorexia and Associated Disorders has a support group locator and information on eating disorders and treatment options.

The Fat Nutritionist - I find her posts on mindful eating to be very thought provoking and eating disorder friendly.  I would recommend her site to any person in the fat acceptance movement and to any person in recovery from an eating disorder.  The fat acceptance movement has really helped me learn to accept my body and be less judgmental.  Unfortunately, many of my other favorite fat acceptance blogs stopped blogging a few years ago.  (Shapely Prose, The Rotund, Two Whole Cakes-I still mourn their passing.)

Borderline Personality Disorder

Healing from BPD - This is a blog written by Debbie Corso, a young woman who is in recovery from BPD.  She is a wonderful success story, because by practicing dialectical behavior therapy for two years, she no longer has the diagnosis of BPD.  Her articles are about using DBT skills and you can even purchase two books that she has written on the subject.  Her blog post, An Open Letter from Those of Us with BPD is a must read for loved ones that want to understand more about BPD.  My mom read it and she said it was very helpful.  Her website also has a good list of BPD resources.

My Dialectical Life - For $15 a month,Amanda Smith, who is another person in recovery from BPD, will email you a DBT skill every morning with ways to use it throughout the day and words of encouragement.  It is meant to help those who are taking or have already taken a DBT class to help them continue using their skills.  I'm thinking of subscribing.

My Recovery from BPD - Another DBT blog by a person in recovery from BPD!  Aeshe is a trans woman and a sexuality educator, who writes practical tips about using DBT.  I like her idea about making a self-soothing kit for when you're stressed and not at home.  In fact, I really wish I had made one myself when I went on vacation last week!  She makes lots of videos, which is a nice change in format.

Behavioral Tech, LLC - This is Marcia Linehan's site (the founder of Dialectical Behavioral Therapy), which offers more information on what DBT is, in depth information on how to practice mindfulness, tools for clinicians and tools for consumers and a DBT center locator.

Fibromyalgia 

But You Don't Look Sick.com - This site has The Spoon Theory story, which has been so helpful for me in finding validation and helping to explain to others why I can't do certain things.  The story is applicable to any kind of invisible illness.

I wish I had resources on bipolar disorder, anxiety, depression, or schizophrenia, but NAMI.org is a good place to start.  I hope these resources help!
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 It is easy to spout trite Christian platitudes designed to make people feel better with bumper-sticker theology.  But insipid axioms do little in the face of the actual brokenness of the world.  It is more courageous to ask the hard questions of God and wait for him to answer than it is to find hope on the side of coffee mug.

Wednesday, April 3, 2013

HAWMC Day 3 - Frustration and Fun

Today's prompt is very simple-find an image that illustrates your condition and experiences.  Immediately, an image came to my mind and here it is:
 
I know it's not very inspirational, but it's how I often feel. If I could describe my illnesses in one word, it would be "frustrating."  For instance, I have felt out of sorts all day-low energy, slightly achy, a little emotional, a little blue.  I think most people feel this way from time to time-it certainly wasn't bad enough to be called a depression, but when I feel this way I don't know if it's just a temporary thing or a sign that I'm becoming depressed again.  I hate not knowing.  Also, in my therapy session today, I gave my therapist some forms to fill out to help me get disability.  The papers contained questions that asked how severely my illnesses prevent me from working and she had to mark "severe" for most of the questions.  I already knew that that was what she had to do and that it was true, but it didn't feel good just the same.  It is so frustrating to know that I have progressed a lot in the past year and yet know that I am still not well enough to work full-time.  Sometimes I just want to pull out my hair and scream from disappointment and frustration.

But I don't want to end this post on a sad or bitter note, so I will present you with a cheerier image of a woman-me!  Here is a picture of me wearing a fun outfit at a party last year:
(the shirt is from Cato - the silver stripes are sparkly, but you can't really tell from the photo)  I went to a party last year and had a lot of fun seeing some friends that I don't get to see that often.  So, you see, I don't feel like pulling my hair out all the time!  It's good to look at pictures like this and remind myself that just because I can't do some things doesn't mean that I'm a failure.  I have a rich social life and good friends.  I take pride in my appearance and have fun.  Mental illness and fibromyalgia may have me wanting to pull out my hair sometimes, but that feeling is not the end of the story.  The end of the story is that I am continuing to get better and I have friends and family that support me.  When all's said and done, that's pretty good.

HAWMC Day 2 -What You Should Know

Today I am asked to introduce my condition to people and to share five things that I want people to know.  After all the different diagnoses I have had even in the last few years, I figure this is a good thing to do.  Unfortunately, I do not have just one condition, but am in recovery from anxiety, bipolar II disorder, ED-NOS (eating disorder not otherwise specified), borderline personality disorder, and fibromyalgia.  I am going to briefly define each condition and then write the top things I want you to know. Not every condition will have five facts, as that would take too long to write!

Anxiety, for me, is to constantly be in a state of panic. I feel intensely overwhelmed and like I cannot handle life on life's terms.  I have racing negative thoughts that may become very loud, almost like hearing voices, and I become so desperate for them to stop that I want to kill myself.

1.  Saying "take a chill pill" or "relax" to someone who is very anxious is incredibly condescending and does not help at all.

2.  Many people who deal with anxiety take a PRN-a medicine that you take as needed-to help reduce the anxiety symptoms.  Unfortunately, there is a stigma attached to taking them, but it is important to know that needing to take a PRN is not a weakness.  Occasionally I take Vistaril to help calm me down when my anxiety level is too high for my other coping skills to work.  Taking a PRN is always better than letting the anxiety get out of control.

3.  Dialectical Behavior Therapy can be very effective in helping people deal with anxiety.  DBT is a type of therapy that teaches concrete coping skills.  Personally, I find it way more helpful than Cognitive Behavior Therapy.  It was first developed for people who have borderline personality disorder, but it is now used to treat many different disorders.  Even though I also have borderline, the main reason why my therapist wanted me to take her DBT class was because of my anxiety and it has helped me a lot.

4.  Sometimes anxiety can be hard to identify.  It may start out as irritability, an inability to make decisions, muscles pains, trouble sleeping or eating, needing to do something obsessively such as counting calories or rearranging items in order to feel like things are "okay." These are all things that have happened to me and it took me a while to realize that I was anxious.

5.  Anxiety is often more dangerous than depression is.  People often associate suicide with depression, but oftentimes people with depression are too unmotivated to act out on their suicidal ideations.  It is the intense panic, desperation, and increased energy that come with anxiety that more often leads a person to kill themselves.

Bipolar II is where a person switches between periods of depression (low mood, energy, motivation, suicidal thoughts) and periods of mania (higher energy, impulsivity).

1.  Not every person who has bipolar disorder is going to experience extreme mania.  The type of bipolar that is most often described in the news is bipolar I, which is the type where a person has a mania where they  spend all their money or think they're Jesus Christ or fly to another country for seemingly no reason.  I have bipolar II, which is where a person has periods of depression followed by periods of increased energy, impulsiveness, racing thoughts, and perhaps irritability or anger.  The periods of increased energy in bipolar II are not nearly as extreme as those with bipolar II.  When the new DSM comes out there will actually be five different classifications of bipolar disorder.

2.  Bipolar disorder can be difficult to diagnose, as most people first seek help when they are depressed, so they get diagnosed as depressed.  This can be very frustrating for the consumer, as often antidepressants without a mood stabilizer will make the person jump from their depression to mania.  This has happened to me.  In fact, it happened just a few months ago!

3.  Good, regular sleep is incredibly important for people with bipolar disorder.  I once had a therapist who said for bipolar disorder, getting enough sleep is more important than taking one's medication!

4.  Although racing thoughts and irritability are no fun, the motivation and increased energy that comes with mania can be very appealing.  Many people do not want to give their hypomanic states up (hypomania is the type of mania that people with bipolar II experience) and so will not want to take their meds.  Hypomania is so appealing, in fact, that many psychiatrists try to keep their patient in a state of slight hypomania, so that they will be productive, motivated, and not terribly depressed.

5.  Many famous creative people have bipolar disorder including Robin Williams and Carrie Fisher.

Eating Disorder Not Otherwise Specified

1.  ED-NOS includes binge eating disorder; those who restrict, but have not lost enough weight to be anorexic; those who purge, but don't binge, so do not classify as bulimic.  Basically it's for those who fall between the cracks of anorexia and bulimia.

2.  Therefore, it is almost impossible to tell if someone has an eating disorder by the way they look.  Not everyone who is fat has binge eating disorder and not everyone who is very thin is anorexic.  Likewise, many people with eating disorders look like they don't have an eating disorder at all (on the surface, anyway).

3.  ED-NOS is the most common type of eating disorder.

4.  Eating disorders are the mental illness with the highest mortality rate.

5.  Fortunately, it is absolutely possible to achieve full recovery from an eating disorder.  I know, because I have.  I'm going to write another post about that soon.

Borderline Personality Disorder - One has to have five out of nine characteristics to be diagnosed, but one usually has an intense fear of abandonment, mood swings that are shorter than those with bipolar, extreme sensitivity, impulsiveness, and frequent suicidal thoughts and gestures.

1.  There is a huge stigma against people with borderline, but people with borderline are not monsters or terrible people.  In fact, one of the most positive things about this diagnosis is that it is proven that people with borderline can change.

2.  Medications can treat some of the symptoms for BPD, but there is no medical cure.

3. Fortunately, with much talk therapy and Dialectical Behavioral Therapy, people with borderline can learn the skills necessary to cope with their personality and can even eventually become well enough that their diagnosis is no longer applicable.  That doesn't happen with bipolar-bipolar has to be treated with medication for life!

4.  Having borderline has nothing to do with stalking.  I only feel the need to say that, because a friend of mine once exclaimed when I told her my new diagnosis, "but you don't stalk people!"  I was very confused and didn't really know how to reply.

Fibromyalgia - It's like arthritis, only joints AND muscles are sore and achy.  Fibro usually is also followed with Chronic Fatigue Syndrome.

1.  Fibro pain varies widely from day to day, so just because I can do something one day doesn't mean that I'll be able to do it tomorrow.

2.  Some people seem to go through remission and some people don't.  Sometimes symptoms get worse and sometimes they get better.  Mine seem to have gotten a bit better than when I was first diagnosed.

3.  Many people with fibro also have depression.  This still does not mean that it is okay to say, "If you would just learn how to manage your depression, then your pain would go away."  That is incredibly invalidating and condescending.

4.  People with fibro sometimes experience what is called "fibro fog," which is where they become confused and have trouble concentrating or remembering things.  This is probably because of the pain or exhaustion.  It can be very frustrating.

Whew!  I wrote more than I thought I would!  I hope that this post was helpful to you and that you learned a lot.

Monday, April 1, 2013

HAWMC Day 1 - Why I Write

Wego Health, which is an organization that helps health activists like myself promote our causes to more readers, hosts the Health Activist Writer's Month Challenge every April.  Like I did last year, I will be trying to write a blog post a day for thirty days following their prompts.  

Today's prompt asks me to tell you why I started blogging in the first place.  I started this blog in 2008 when I was going to school in Milledgeville, because I felt very alone and isolated.  At the time I was diagnosed with schizoaffective disorder and I had no one to talk to about my struggles except for my therapist and my doctor.  Of all my past diagnosis I have found schizoaffective disorder to be the most isolating, because so few people know what it is.  Of course, having any kind of mental illness while in college can be very discouraging and frustrating, because colleges are simply are not set up to help those with severe mental illnesses.  

I wanted a community where I could talk about my struggles and successes in regards to my mental illness.  I also wanted to spread what I believe is my calling, which is that I believe there is hope for people with severe mental illnesses and addiction to accomplish their dreams and to have a life worth living.  Hope is real!  All too often the message that I heard from both those with mental illness and from others was that mentally ill people could not finish college, have a satisfying career, start a family, or posses a rich social life and I did not believe that was true.  I still do not.  I think that sometimes our goals and dreams have to be modified, because of our conditions or circumstances, but that is true for everybody.

When I first started this blog I took a big risk.  I had a message I wanted to share, but my self esteem was so low that I gave up after getting no comments about my first post.  I was desperate for community and very discouraged.  A year later I was back to living with my parents and participating in my spiritual community.  I felt very discouraged for not completing my music therapy degree, but I decided to try blogging again.  I'm glad I did!  Being away from the stress and loneliness of school made me more focused on my recovery and I have enjoyed sharing my journey with my readers.  Gradually I have become more confident in advertising my posts.  Reading the responses from friends and other bloggers has inspired me and motivated me to keep on writing.  It is my hope that people reading this blog will see that throughout my struggles and successes there is always the message that hope is real for living a successful and fulfilling life despite one's mental illness, disorder, or addiction.