It's The End of The Month As We Know It

It’s the last day of HAWMC! Congratulations, you completed 30 days of writing! Take this last post to reflect on your health advocacy journey and set a goal for the next year. Perhaps you want to try a new platform for your activism, attend a patient summit, or start a podcast. Remember, “Set your goals high, and don't stop till you get there.”

Guys, I did it! I completed HAWMC! I did skip 3 days, but those were intentional, as they felt like things I'd just recently written about, or that didn't particularly apply to me at the moment. Or, in the case of yesterday's, I've just not had a ton of chance to read others' post enough to pick one (sorry, that makes me a bad HA I know). But considering that this month held more work hours than normal, the Thanksgiving holiday, and stomach-virus-ageddon, I'm pretty proud of myself. 

My goals for next year? Well, I do want to attend a patient summit and/or conference for HAs. That's pretty high on my list. I also want to make sure to raise the necessary funds and complete my fourth Overnight Walk next June.  

My biggest goal, however, is a project that I've just recently begun promoting called the Spread Hope Project (link to initial Instagram post here). The project idea bloomed from a shirt I own that says the word "Hope" across the front, which I bought at an  event but have seen nowhere else on the organization's website or elsewhere. I loved the message of hope and thought, "How great would it be to get a picture with a shirt that says 'HOPE' in as many different locations and with as many different people as possible." Literally, spreading Hope to as many places and people as I can. I broadcasted this on social media, and people started volunteering themselves or their locations/cities/etc for pictures. A friend then suggested making my own "hope" type shirts (not the same, but with the same message) and donating the money to mental health and suicide prevention charities. This idea merged with a similar one that had already been brewing in my head, and the Spread Hope Project was born. I have more ideas, longer range goals down the road, but for now, I'm focusing on getting out there and getting pictures with people and places, and eventually developing Spread Hope shirts (not the same as the original, but with my own logo) so that others can Spread Hope as well.  (CYA: I know there are trademark/etc processes involved in creating my own design here and I'm on it). 

And so, my call to action is this: If you are interested in being in a Spread Hope picture, or think that your location would make a great backdrop, let me know! Additionally, if you are a business or organization, especially in the Philly/South Jersey area, and would like a picture in your location and a tag on social media, reach out! As the rest of the plan becomes more concrete, I'll undoubtedly be posting more on this. But for now, you can follow along on my personal Instagram and twitter, as well as with the hashtags #spreadhope #spreadhopeproject #spreadhopestopstigma and #spreadhopesavelives. Let's get those pictures rolling!

Challenges and Little Victories

HAWMC Day 28: 5 Challenges & 5 Small Victories. Make a list of the 5 most difficult parts of your health focus. Make another top 5 list for the little, good things (small victories) that keep you going.

Challenges and small victories are what being an HA is all about. The challenges force me to look at my advocacy work, my condition, and myself in a new light, and the victories, well they're part of what gets me out of bed in the morning. So here we go. 

Challenges: 

• The stigma.  This, to me, is both the biggest challenge, and one of the most important reasons I advocate. Over time, I've developed more of "deal with it or don't be around me" attitude towards the stigma, but it's still always there. Naturally, I care less about what people I don't know think of me, and I feel that my friends aren't real friends if they stigmatize me because of my illness. But it's those in positions of "power" that have caused concerns at times - those at work, in professional organizations (I've sat on several boards), clients, potential clients. I say "power" because if they decide to stigmatize, it could really cause a problem in my career. It's much more difficult to say "well I'm better off without them" if it's someone who can directly affect your livelihood. 

• Offering insight into my cycles without completely confusing or concerning my reader. I often write best when I'm battling anxiety, depression, or hypomania. It helps me give a "first hand" account of what it's like, in the moment. But I also have to balance that with not writing when I'm all over the place, can't focus, can't think clearly, or when I'm so low that things I say could concern my reader. 

• Not blogging/tweeting/posting every thought that ever comes into my head. Writing is my escape, especially in the midst of a tough mood cycle. It helps me get my thoughts out of my muddled head, which helps to ease the constant tug of war in my brain. But I have to force myself to pause and take some time before hitting publish. Because I try to understand that even if it seems urgent to me in this moment, that may not be the case, and it may do best to let it sit, re-read, revise as necessary. Especially when angry. 

• The constant advice. I know many people have the best of intentions. But I'm battling a serious medical condition, and it can't be "fixed" by taking deep breaths, meditating, praying, focusing on the positive, etc. Can those things help? Possibly. (Though, I'll step out on the praying bit personally, as my status with religion is shaky at best). But they aren't going to cure me. Thinking positively isn't going to make my depression go away, just like it wouldn't make someone's cancer or heart disease go away.  Because trust me, if it could, I would have done these long ago. 

• The topic of medication.  This is a bit tied to the above. People often think I can just will myself better. Let me tell you something: I cannot.  Period. Trust me, I've tried. I've tried everything I can that didn't involve medications. And I was no better. My medication is live saving.  Yet so often I have to battle the "You're a pawn of the pharma industry. Your Dr. isn't helping you they just want you to need them more" people. And maybe they've managed to help their condition without meds. I'm super happy for them, seriously. Because meds suck. But the don't suck more than they help. They are not me, and therefore they don't know what's best for me. These people anger me SO much. I don't do well with people who think they know my body and my brain better than me. The stigma of medication is a whole other animal from the stigma of the disorder itself. 

Little Victories:

• Every person who comments, messages me, or contacts me in some other way to let me know that my efforts have helped them. 

• My spoonie community. You guys are my life line at times. Literally. 

• Completing the Overnight Walk three years and counting. These are some of the most amazing experiences of my life. Hearing people's stories, meeting others who have battled themselves or who have lost loved ones to suicide makes me fight that much harder to help those who need it. 

• Getting nominated for a WEGO Health Activist Award. Thanks, guys! I didn't win, but hey, there's always other years. The nomination itself means so much. 

• Opportunities to guest blog, host twitter chats, and share my experiences in other ways on other platforms than my own blog. Working together is key to me, and the opportunity to do so with fellow HAs is awesome! 

Hey, Healthcare Industry!

HAWMC DAy 25:  As health activists, we are on a mission to innovate healthcare. If you could change one thing in the healthcare landscape right now, what would it be?

Just one? Pretty please, can I pick at least... oh... 10? Or at least 3?

If I had to pick just one thing, it would be the lack of patient input. Not the most technical term, I know, but I'm battling flareups of both CFS and IBS, as well as a depression cycle this morning, and I'm lacking for one right now.  But more or less, patients needs and wishes - from the patients themselves, not assumed by or guessed at by bigger companies, organizations, etc - should be sought and incorporated more. Period. If they are not, how can you truly have the patients' best interests at heart? And after all, the healthcare industry should be about just that - patients and their health.

The thing is, unless you've experienced an illness, you can't 100 percent understand the needs of each of those illnesses? Unless you've battled chronic illness, day in and day out, over weeks, months, years, how do you know what would best benefit those who do? Not to mention that needs aren't the same across the board. What someone with depression requires probably isn't the same as what someone with a heart condition or an autoimmune disease requires. Without input from patients battling wide range of illness, it's virtually impossible to make sure that each of their needs are met.

How can this be accomplished? I'm not sure. But it's crucial for those of us for whom monthly, or even weekly, or sometimes daily doctors visits and healthcare visits and treatments are a reality. When it comes to the chronic illness, I consider myself lucky to only have to see my healthcare professional every few weeks, to only need blood work every six weeks, to have found a therapist (my main treating healthcare professional) who I trust, even if she can't take insurance. But I still don't have the access I should. I shouldn't have to pay $6000 out of pocket before insurance kicks in. I shouldn't have to pay ridiculous amounts for necessary blood work, to ensure that my life-saving medications aren't damaging my organs. I still shouldn't have to choose a bottom of the barrel insurance plan for over $400 a month because it's all I can afford - though trust me, I'm glad I at least have to be guaranteed insurance (for the time being at least). I shouldn't have to accept what I can get when it comes to my health, my life. But I do, like so many others. Because we don't get input, not enough at least, into our healthcare system. We just have to be the recipients of what everyone else decides. 

Pictures Worth 1000 Words

HAWMC Day 24:  Choose 3 images that represent your health focus.  Share the images in a post and explain why you chose each of them.

Each of these beads represent one of the reasons I walk the Overnight Walk every year. 

Blue:  Support suicide prevention

Teal:  Friend or relative who struggles or has attempted

Purple:  Lost friend or relative to suicide

Green: Personal struggle or attempt

Each of these people has been in some way affected by mental health and suicide. Each of them are impact enough to walk 16 to 18 miles, overnight, for the cause.

Each one of these luminaries represents someone who has died by suicide. 

This is why I do what I do. Each and every one of these people and their loved who struggle or have lost their lives to suicide are why I advocate, and will continue to do so. 

Say What?

HAWMC Day 23:  Say WHAT?! What’s the most ridiculous thing you’ve heard about health or your condition. Was there any context? What did you think at the time you heard it – and what do you think of it now?

Honestly, most of what people say about my condition is ridiculous. At least those who don't understand it. But I think the most ridiculous thing I routinely hear about mood cycling is when people thing we go Jeckyll and Hyde mid-sentence. When they say things like, "She was being all nice and then just flipped. It's like she's bipolar."  Yes, I'm rapid cycling. But I can at least finish a conversation before I cycle. I cycle in a matter of hours or days, not seconds.

This type of thinking perpetuate stigma. It makes people view us as volatile, unpredictable. So when the media tries to pinpoint as dangerous, people nod and say "yes, I can see that," despite statistics quite to the opposite. This perpetuates the cycle, and round and round we go. Not one person stopping to actually learn about the disorder and how it manifests itself.

What did I think about it when I heard it vs now? The same. I still think it's ridiculous to think someone could literally just cycles mid conversation, without any "warning", for lack of a better term. And I still think it's just as stigmatizing, ignorant and closed-minded to think this way. Here's a tip: if someone switches on you like this, I'm willing to be everything I own that they aren't cycling in that very moment. Perhaps they're having a bad day. Or perhaps you're just being a jerk and they've finally reached their boiling point. Because sometimes it's not us, it's you. 

Health Blogging Tip Tuesday!

Tip Tuesday! Have you mastered the hashtag?  Figured out the Instagram algorithm? Or maybe you have a few tips to increase your blog followers.  Whatever it is, share your expertise with your fellow HA’s- it’ll only make our community stronger!

I feel like a broken record on some of these prompts, saying I haven't mastered anything. But that's the case. But I don't like the terms "mastered" or "expert" or, oh god, "guru" - please don't ever call me a guru. What I have is my own life experience to share, a lot of empathy for others going through similar things, and the ability to try not to judge but instead listen openly (unless you're stigmatizing, or judging others, then I'll have something to say about it).  My strategy is to  not stick to one thing too stringently, because I like to reach different people in different ways and having just one prescribed formula for everything I have to say as an HA doesn't seem to work, for me at least. But here are a few things I do try to do consistently. 

• Hashtags. I tend to use the following (when they fit and are applicable to said post/share/tweet/etc)
• #mentalhealth 
• #chroniclife 
• #cyclothymia
• #spoonie 
• #moodcycling
• #stopsuicide
• #anxiety
• #depression
• #20x2025 (this is used by AFSP for posts related to suicide prevention. I use it less, but when I'm referring to my suicide prevention efforts specifically I do). 
• When it relates to being an introvert with anxiety, social anxiety, I also use the following:  #introvert, #INFJ, #socialanxiety
• I've recently been using hashtags for my new Spread Hope project, but that's more in an effort to get it out there, not because I think tons of people follow them. Those are (as of now, this is brand new): #SpreadHope #SpreadHopeProject #SpreadHopeSaveLives #SpreadHopeStopStigma. 

• Twitter chats. I try to participate in a variety of twitter chats on chronic illness, mental health, and HA topics. These include chats such as HAChat, MHChat, SpoonieChat, PatientPrefChat. There are others that I hope to/plan to/would like to participate in but haven't gotten to. And if you have suggestions for chats, I'm all ears! 

• Varying my social media modes and times. The bottom line is, there are HAs, and people looking to interact with them, all over the world. And they probably don't all love the exact same types of social media or get online at the same time. If I simply used a set schedule, I wouldn't be interacting with half the people that I do. While I use some (twitter) more than others, I am working on branching out and finding ways to best use a variety of medium. 

• I combine personal "me" stuff with HA stuff. There are pictures/posts about my dog, my family, my travels, as well as my advocacy efforts. I find people like dealing with people, flaws, daily life, and all. Plus, maybe what catches someone's attention is a picture of my dog, and then they'll from my other posts that I, too, battle depression like they do, and we'll connect over both our love of dogs and our health battles. Which we may never have done if I hadn't posted a picture of my dog, with the hashtag #dogmom, which they happened to search that day.

• I try to interact almost as much as I post. Whether it's a like or a favorite/like, a reply, a retweet, a share, etc, I feel that, especially when it comes to interacting about such a personal topic, you get what you give. I can't expect everyone to care about what I'm saying/posting/gramming/etc if I don't care about theirs. The social part of social media is key. 

That's what I have, folks. Nothing profound, I know. But it's what (works kind of) for me, and what keeps me advocating on social media. 

What is Your Life Motto?

Monday Motivation: What's your life slogan?  Explain what words or mantra that keep you going and why.

I feel like in many ways, this post is similar to week one's Quote Inspiration post.  I don't have just one life motto, because as a mood cycler, often the message I need to send myself is not the same from day to day. When I'm in a hypomanic cycle, I might need to remind myself to reign it in, slow down, focus on smaller things. In a depressed cycle, I might need to motivate myself by reminding myself that I'm worth it, that my efforts help people, that I'm not hopeless. But here are a few thoughts/sayings/quotes that keep me going. As mentioned, I've already written about my favorite from Charles M.  Schultz as part of this challenge, so I'll leave that one out here. As always, these are in particular order. 

The first two are from my Grandma Ventura, that have become somewhat iconic in my family. 

•  When asked how to get through to get through a difficult time, my grandma used to say "You put one foot in front of the other." It reminds me that you don't have to always get through something perfectly or gracefully. You just have to get through it. I picture someone walking through some sort of murk or mist, not being able to see anything but their feet moving beneath them. They don't even realize the progress they're making, but they are making it, by putting one foot in front of the other. 

• The second one is less poignant. "If it ain't your ass, it's your elbow." Basically, it's always going to be something. Which reminds me not to wait until everything's perfect. It's never going to be. If it's not one thing, it'll be another. Try not to let it stop you. 

My grandma also used to say "Cream and bastards rise to the top", but I'm not really sure I apply that to daily life, other than to hope that when I do "rise", it's because I'm the former. 

The other things that get me through life regularly are oddly morose. Which is particularly strange, to me at least, for someone who blogs on mental health and suicide prevention.  But possibly because of that, because I often am addressing the topic of life and death head on in my efforts, it makes me think about it beyond just causes for which I advocate. I try to live my life according to the following: 

• What will the person giving my eulogy one day say? To clarify, this is not something I think about because of suicidal thoughts. It's oddly, something I think about when I'm focused on life and the future, focused on living.  It reminds me to live in a manner that I would be proud for people to speak about one day.  

• What will my legacy be? I think about when each of my grandmothers passed away. I think of the stories we told about them. I think about how we talked about their best qualities, how we laughed at the funny things they did and said. I think about how no matter what might have happened in the past, the whole extended family came together to share in their legacy, even if just for a little while. I think about what they've left of themselves (in "spirit", which I'm using in a non-religious way here) to pass down among the generations.  What do I want people to be passing down about me?  What will I have to show for my life at the end of it - whether it be something I've done, who I am as a person, or some combination of that? Am I truly, deep down, proud of what that would be? 

• If something happened to me tomorrow, will I be proud of how I spent my last days? Did I spend it focusing mostly on "to do" lists, tasks, chores, work, etc? Or did I spend it focusing on what I love most - my friends, my families, my causes for helping others? What where my priorities? Should they have been, if I were to look back, knowing they were the last things I'd say and do?