Take It Or Leave It

I'm at the point in my life where I know who I am. It's taken me a long time to get there (read: 35.5 years). But I'm there, at least for the most part. Sure, there are times I question myself, my decisions. There are times I doubt myself, listen to others' negativity. Times I see all the "cool kids" doing one thing and me over here a frazzled beautiful mess writing books in my head or getting lost in them in my recliner.

It's been a long journey. There were times, not so long ago, I might add, that I would change everything for people. A friend would get upset at a trait and I'd rush around apologizing and trying to change it. Or I'd see everyone was acting one way and think "wtf is wrong with me?" Or a significant other would criticize me during a fight and I'd move heaven and earth to become who they wanted me to be.  Now, I've made great strides.  And I have learned that there are some things that people who are part of my personal life (in any capacity) are going to have to deal with.

• I have a lifelong mood cycling condition that won't go away. Period. I have ups, I have downs, I have normal  "normal is boring, but I'm not up or down". I don't want people in my life who only want to deal with the best times.  And if you ever tell me you wish I was normal, you'll likely find my abnormal foot in your ass. And don't ask me "why?".  I just told you why. If you had cancer and said you were in pain, and I replied, "Again? What is it this time?", I'd be an insensitive a--hole. Same holds true here. 

• I'm on medication and I go to therapy and I'm not afraid to be open about it. It routinely happens that friends ask me "what are you up to tonight" and I say "therapy appointment." Or I realize it's time to take meds and open up the bottles in the middle of lunch. You're embarrassed/uncomfortable? Oh, I'm sorry, I didn't realize that my medical condition was about you. Please forgive me.

• I'm loud and talkative. That's it. You don't like my energy, don't be around me. But DO NOT shush me or tell me to be quiet or any form of this. Not if you value your head. 

• I'm a planner. This doesn't mean I can't be spontaneous, but I don't love to be up in the air. Which means I don't like indecisiveness and maybes if it's going to affect my entire day/week/month, unless absolutely necessary.  Understand, there's enough uncertainty inside my brain. I need something that I can count on. 

• I don't always want to be around you, or anyone, especially in a social setting. I need downtime. I work with people all day long. I actually have to ask for coverage to go to the bathroom so that there's someone at the desk. And I don't mind this at all. But sometimes, when I'm not at work, I want to be able to use the bathroom without announcing it. And when I'm in a depressive cycle, I don't want to have to pretend 24/7 that I'm not. Nor do I want to be a downer around you. So please, let me have my "me time" without criticism. 

• I do not think like you or see the world like you do. This must, must be ok, accepted, respected. I see the world through an emotional lens, through the lens of ups and downs, through my heart, through a mind that stretches to creative places that you may think are "crazy" (I write short stories and books in my head, people). What you may think of as normal isn't to me. And what I think of normal isn't to you. I live my life according to love and passion, not according to money or societal standards. There's no script for living. Moral and legal obligations aside perhaps, thinking your way is right and mine is wrong is patronizing and narrow-minded. It says much more about you than it does about me. 

• I live life the way I want my eulogy to read. Well, there's a happy thought for you! But seriously, it's true. If it's a wonderful day outside, I want to spend time hiking with a friend, or dining al fresco, or sitting on the deck in my lounge chair reading a book, not cleaning the house. Because I'll be damned if the last thing people to say about me is  "her house was impeccably clean." Life is meant to be lived. We all live it our own way. It's not better, or worse. It's just different. 

• I cry a lot. Happy, sad, overwhelmed, because it's a beautiful day, because I'm nostalgic. Because my depression is making me cry and I'm not sure why. It's cleansing to me. Try it sometime. 

• Remember in school when you used to take mental health days? Yeah, I still need them. Not from work, because I'm too dedicated to that, but from other responsibilities that can wait (see bullet points above). It's not laziness. It's taking care of my health. 

If you want to be in my life, I need you to accept, and respect, these things. Just like I'll accept and respect things about you. I don't call you "normal and boring", so don't call me "crazy and ... whatever else you might throw at me. I'm perfectly happy for you to be the cool one, to fit in, to do the things that society says humans should do, the way society says humans should do them. That's not me. Period. I will not change for you. I may make adjustments so that we can meet in the middle, because I believe in compromise. But I won't refuse to be myself so I can be who you want me to. I can't change the way you think (just like you can't change the way I do). But I can change the way I react to it. And that includes deciding who I want in my life. 

A Little Perspective From a Very Scary Weekend

This past weekend started off well. It was a long weekend and I only had to work one of my jobs on Friday, so it felt like a semi-four-day weekend. I got up Saturday, went for a run, did some things around the house (well, I emptied the dishwasher and started laundry, which is as much "doing things around the house" as I generally get, especially on a holiday weekend). We had a fun weekend planned ahead of us.

And then, my phone rang. It was the vet. I'd taken my dog for a routine vaccine booster on Thursday, and they'd asked me if, "because she's getting older", I'd like to do a blood panel workup, just to make sure all is clear. Cinn's been acting like her normal self - read: pretty lazy but running around the yard on occasion - but I figured sure, why not. She is 10, and despite my wish that she'd live as long as I do, I am somewhat realistic. My vet told me that she'd be back on Tuesday so I probably wouldn't hear from her until then.

So when my phone rang at 9 AM on a Saturday of Memorial Weekend and I looked down and saw the vet's name pop up, I knew something was wrong. It was my actual vet, calling from home on her day off, on the other end of the phone. Usually the techs call when it's a routine "all looks good" and the vet isn't there. This did not feel right. To make a long story short, Cinn's platelets are very low. They're supposed to be at 150,000, I'm told. Hers are at 30,000. My vet told me, "it could be a lab error, or it could be very severe. If it were my dog I wouldn't wait until Tuesday when I'm back in." I handled it OK cried like a baby on the phone with the vet while hugging Cinn, begging her to be OK, and saying I'd bring her right over to Emergency.

The emergency doctor, who was wonderful and redid the platelet test for free, confirmed that it was not a lab error. We talked about obvious causes and what we could do for each. They stuck Cinn like a pin cushion (and shaved part of her legs to do so) for further blood tests, and then did several xrays. Nothing came up positive, which was in one sense a relief, but didn't help to give us any answers. In addition, they said her blood was clotting normally, which it shouldn't be for such a low platelet level. More or less, they're somewhat stumped.

On the chance that it's an autoimmune disease, she's now on a steroid and another medication, plus extra strength Pepcid AC for her already sensitive stomach. She's home, and other than being extra hungry and thirsty and needing more frequent bathroom breaks, she seems ok - of course she did before I got the phone call, so that's not much of an indicator, other than I'm glad to see that she doesn't look to be in pain. All she knows is she's getting an extra "meal" (really her normal amount of food split into three meals instead of two because one of the meds must be taken with food) and she gets peanut butter three times a day, because I have to hide the pills in it. Unlike her mama, she's probably forgotten all about the multiple vet visits, the blood work, the xrays, and she's oblivious phrases like "autoimmune disease" and "possible cancer", for which I am glad.

We had a very, very close call, and are by no means out of the woods yet. If her blood work doesn't improve, we were told we can get an ultrasound "if a diagnosis of cancer would affect our course of treatment" - i.e. if we wouldn't plan on doing chemo etc, they don't feel we need to do the ultrasound. Those are never words I want to hear about a loved one, human or furry. Hasn't our family had our share of that awful disease enough in these past few years? I can't think about that yet, though I know I should be. My poor baby girl is going on 11 years old. She seems to be enjoying life. Would putting her through all of that be for her, or for me? I'm not sure. I'm trying to think positive.

If anything good came out of this weekend - in addition to the fact that nothing obviously ominous showed up on her lab work - it's that it reminded me how short life can be. I know it sounds dumb. She's a large breed dog. Obviously, her life has a span of, I don't know, 15 to 16 years if we're really lucky? But still, I'd just kept thinking that's five or six more years. I'll prepare myself slowly. But this is different. She showed now signs. I wasn't prepared for this news. It isn't five years from now. It was a holiday weekend full of expectations of fun and relaxation. And so I spent the rest of the weekend (hugging/spoiling Cinn and...) trying to focus on the moment. I put an out of office message on my email. I tried not to worry about things I had to do once the weekend was over. I didn't pre-plan everything down to the last minute for the upcoming week, like I usually do. Instead, I focused on spending time with loved ones and just enjoying it. I vowed to do this more often. Life really is all too short to do otherwise.

Are You An Inny Or An Outy?

I've been really into personality types lately, partly because when I'm bored but want to keep my mind active, taking the various tests is a fun way to do so, and partly because I just like exploring personality (I was a psych minor in college).

The Myers Briggs MBTI, of course, is the standard test, with it's 16 personality types based on the following: Introversion or Extroversion;  Sensing or Intuition; Thinking or Feeling; Judging or Perceiving.

For much of my life, I was considered an ESTJ - Extroverted, Sensing, Thinking, Judging. At approximately 11 percent of the population, it's one of the most common personality types. Now, I test as an INFJ, which makes up a less than one percent of the population, and is the least common of all personality types. What changed? A diagnosis. Medication. Social Anxiety. Reflection. Learning who I really am and being comfortable with it.

As I've grown to love this new, or newly discovered, part of myself, I've learned that there are a lot of common misconceptions about introverts, even those of us who seem to appear to much of the world as extroverts.

Myth: We're boring; we don't like to have fun.
Reality: First of all, who goes through life truly hoping NOT to enjoy it? We don't like to have fun? Seriously? Come on. Fun is in the eye of the beholder, and everyone has a different idea of what's fun. We don't need to be in big groups having a rowdy time to have fun. Introverts prefer smaller groups in less crowded "venues" (even if that venue is your home, or mine).

Myth: We're disinterested/shy.
Reality: We don't like to be the center of attention, especially in groups. You know that dream where you show up at school naked and everyone's staring at you? Yep, that's pretty much how it feels for us to be at the center of attention. Just because we're not in the middle of things doesn't mean we don't care or aren't paying attention. In fact, we're excellent observers. You'd be amazed by what we know.

Myth: We're all quiet.
Reality: I'm Sicilian. I'm one of the loudest and most talkative people I know - just not in a big group of people I don't know well, per the reason above. Introverted doesn't always mean quiet. It means we need the right company/audience/topic. We're not small talkers, and we feel awkward pretending to be.

Myth: We don't have hobbies/interests.
Reality: You know us introverts. We just love staring at the wall and watching paint dry... We have plenty of hobbies and interests. They just may not be ones that we have to share with a lot of people, or ones that are the most popular by societal norms.  But they're interests none the less.

Myth: We don't like going to events/concerts/festivals/etc
Reality: I can't speak for everyone personally, but I do like doing these things.  What I don't like is having days of them in a row, especially if I'm expected to interact frequently with lots of people. Again, see the "we've not small talkers" point.

Myth: We're just not social people.
Reality: We are social. We just need social in doses, with people who specifically want to socialize with us. We need time to prepare to be with people. We can't have social occasions sprung on us, nor can we have the size of a social occasion sprung on us (i.e. I think it's two of us catching up over coffee and it ends up being me, you, and 5 of your friends I barely know at a crowded lunch). We want quality, meaningful time, with you because, after all, you're the one we planned on using our time and energy to see. And after each social occasion, we need time to recoup, because they are physically, emotionally, and mentally taxing for us, even if we're having fun.

I know the need for large quantities of alone time and the lack of enjoyment of big social groups brings can be confusing for extroverts. And please know, this doesn't mean the people in our life aren't important. In fact, they may be more-so by comparison. We only have a few that we consider close enough to let into our inner circle and our inner lives, and therefore, they are virtually priceless to us. We don't send out mass texts saying "everyone's invited" (and if we do that "everyone" is probably three or four people max, all of whom we know very well), so if we do pick you, you're special to us.

So how can introverts and extroverts co-exist socially? I think the answer is compromise. I've gone to many a 20-person-intensely-social get together because it was important to a close friend or loved one. I've sat there awkwardly trying to join in a conversation with people I don't really know, feeling even more awkward than I look, because I know they want everyone to have a good time and don't want to let on that I'm not. On the flip side, it would be nice if sometimes my extroverted counterparts suggested (so that I don't always have to seem like the "downer" by suggesting myself) something that's more my size and my speed, even if it's not necessarily their top choice. And please, value our time together. Not because I'm a warm body to do something with, to add to your group, but because you truly value me as a person, just as I value you. If we do that, I think we can all get along quite nicely.

Look, A Squirrel!

You're probably all familiar with the "squirrel" or "shiny object" description for people who have trouble focusing. For those of us that suffer from this on a daily basis, it's a cliche sometimes used by ourselves to diffuse the frustration of it. As I've mentioned in previous posts, sometimes it's easier to joke about myself  in order to take power away from those who truly intend to criticize or make fun of me. I point this out because I know that this inability to focus is a serious challenge for many people - both diagnosed with attention disorders, and those for whom it's a secondary symptom. I don't for a minute want anyone to think I do not take their conditions or symptoms seriously- there are enough people in the world with that attitude, and I am not among them.

For me, as a mood cycler, it's a secondary symptom. By this I mean that it's not one of the symptoms used to diagnose my condition. But that doesn't mean it doesn't give me a hell of a lot of trouble. In a hypomanic state particularly, attention is a trait that escapes me. My mind jumps between topics and ideas constantly, which means there doesn't even need to be an external stimulus. My thoughts and ideas, sitting in a clumsy mess inside my own head, are enough to distract. Virtually nonstop. Getting through a task can be agonizing, and knowing I need to focus and can't just creates anxiety, and occassionally panic, which only serves to intensify the issue.

On the flip side, when I manage to zone into something, say writing or reading, I've been told the house could be burning down around me and I don't notice. I've found out, hours later, that someone was calling my name (at close range, like standing next to me), talking to me, having a nice little soliloquy, because I had no clue - I wasn't ignoring them, I literally didn't hear them because I'd gone into my zone. My attention, like my mood cycles, seem to be either at one end of the spectrum or the other. I notice that it's mainly in those tasks that take me into another world, my creative, imaginative world, that hold my attention so deeply. I'm not quite sure why this is, other than that to get there, I must have to focus so much energy that there's no turning back.

Focusing isn't only troubling during hypomania. In a depressive cycle, well, everything's difficult. During these cycles, it's not that my brain is jumping around, firing here, there, and everywhere. It's that it often doesn't feel like it's firing at all. Clearly, it must be, because I'm alive and going through the daily motions. But I can't feel it. I know it's weird to say you can feel your brain firing, but I honestly feel like I can at times. During depression, though, I'm in a fog. My senses are diluted. My emotional core feels vacant. And when there's no sensory or emotional intake, it's difficult to find anything worth focusing on. Nothing grabs at you. It's not that there's too much stimuli. It's that there's none at all.

I write about this because it's a part of mood cycling that I think is easily overlooked, and yet a very frustrating part. It makes day to day, supposedly mundane tasks challenging. Things like cooking, for instance. Nothing like putting something on the stove or in the oven and then getting pulled away by thirty different different thoughts, only to completely forget all together that you were cooking. Or starting five different emails when things pop into your head, and getting so wrapped up in each new one you start that you forget you've not finished or sent the others. And what's more, every thought seems equally as compelling and necessary. The fact that you need to ask a friend about concert tickets truly seems as important as the item cooking on the stove. It's not "having messed up priorities", as I've been accused of, but everything seeming vital right at this moment, because you know if you don't do it now, poof, it could be gone forever. Not because it's not important, but because even those with expansive, hypomanic brains, can only hold so many stimuli at once.

So please, if you see us focusing, concentrating to get something done, leave us to it, unless the house is literally burning down around us (or something truly as emergent). If we don't get this done now, we never may, and though it may not seem vital to you, we'll get very anxious about it if pulled away. It's just the way our brains work, whether it makes sense to you, or to us, or not. 

Mother's Day For Non-Mothers (And Those Who Have Suffered Loss)

Now that the #HAWMC is over I've taken a whole four days off of blogging. It feels weird. It feels strange not to be blogging and posting and interacting with my new #HAWMC twitter friends daily (guys, I miss you!). Who would have thought that a month of talking constantly about chronic illness would be so uplifting?

But now, I need to talk about a topic that's a bit more depressing. Yes, more depressing than talking about depression. It's something I've discussed periodically, but it's incredibly timely at the moment.

Mother's Day is coming up this Sunday. Which is great, because I have THE BEST MOM IN THE WORLD. Yes, I just turned into a 7 year old for a moment. My mom is amazing. She's my rock, my mentor, my best friend. And really, I'd like to celebrate both of my parents every day for all they've done and been for me (honestly I try to as much as possible).

But Mother's Day also tugs at my heart, and the corner of my eyes where the tears well up, and my gut, and my brain and.. and... everywhere. I have explained before why I have chosen not to have children, although "chosen" isn't really a fair word, as doing so would put both myself and my child at great health risk. But technically, it's a choice - at least as far as I know. I've never attempted to concieve, but other than a slight scare last year of potential endometrial cancer, which was thankfully not, there's nothing to suggest that I biologically couldn't. Still, for all intents and purposes, I'm am childless due to health reasons. I have other friends in the same position. I have people close to me who physically are unable to have children, and others who have had miscarriages, who have lost, or are losing children to illness. I have friends who have lost mothers themselves, for whom this day will always be a heat break, even when they are mothers and grandmothers.

I'm all about celebrating our mothers, and yourselves, if you're in fact a mother. But just try to be mindful of those who are struggling with this as well. I completely get that people will randomly say "Happy Mother's Day" the way they say Merry Christmas without knowing if you actually celebrate. I understand that, and I'm not all about the "everyone must be so PC we can't say anything." But if you know someone personally, and they're struggling with having a baby or can't have children or have lost a mother, try to be understanding of this. For instance, things like "well, you're still young, you never know" or "hey, at least you can still go out on Friday nights" aren't super comforting, at least not for me. Because I pretty much got over partying every weekend about 10 plus years ago, and I'm 35 years old, from which age pregnancy is technically considered a "geriatric pregnancy" (yep, you read that right, in the eyes of medicine, 35 = geriatric). And for those who have lost mother's, things like "she's in a better place", I'm guessing, are equally as un-comforting on this particular day, unless you are very highly religious.

I am super lucky to have some amazing kids in my life - seven nieces and nephews, and my boyfriend's son, who I love as if he were my own. So I guess I should count my blessings. But still, on this day in particular, I'm so aware of both what I do have, and what I do not. Will I get over it? Some day, I hope. Will others in this same situation? Someday, for their sake, I hope. But please, give us time, as much time as we need. And if Mother's day, or any other day, is tough for us, simply understand that you can't understand, and let us hurt without criticism or platitudes. 

Three Cheers For #HAWMC And All Of You

#HAWMC Day...31? AKA Recap:  You've crossed the #HAWMC finish line. Recap the past month for us. What did you enjoy, what didn't you enjoy? Favorite prompt?

This was my first time participating in HAWMC, and it has been a wonderful experience for so many reasons. First and foremost, I "met" some wonderful people who also happen to be blogging health activists. In a time when I was truly feeling a bit lost, and a bit at a crossroads, like so many people in my life just aren't going in the same direction as me and don't understand me, I was able to connect to those who seem to be on my path. There are so many others with chronic illness, invisible illness who are also sharing their story, working to raise awareness and educate, and fighting against stigma. Others who know what it's like to feel sick, even when you look fine, who often can't participate in "normal" life because of their condition. I also learned about their conditions, some of which I (shamefully) knew nothing or very little about. And I hope to continue to share their stories, and help them raise awareness as well, long after HAWMC is finished.

The prompts worked as helpful muses on days when I may not have much to write about, or much new to write about - with chronic illness, there's always something to talk about. They got me out of my comfort zone, and at times helped to re-route my thinking . The recent "five ways to make your day better" (paraphrasing here), is a perfect example. I'd been having a really crappy-ass week, and it forced me to look at, and even try, some ways to improve my days, even if just the slightest bit.

My favorite prompts: Well, any excuse to talk or write about Cinn is always good, so obviously the Pet Pal prompt was up there. I loved the Open Letter as well. It gave me, and I suspect others, the chance to say a lot of things we needed to, without probably alienating ourselves from friends, loved ones, our doctors/nurses, and others (I say "without alienating" because I'm guessing those who have failed to understand also don't read my blog and therefore won't ever read it).  The word cloud, for it's ability to use words, colors, and a form of digital art was special. I'd never actually used one on my blog, and I love visuals. I might have to try that more often. The Tagline, despite my worry about my inability to come up with catchy titles and subjects, was eye opening, because I open-sourced it, and had my friends describe me in one word. It was interesting to see not only who replied (there were some surprises!) but what they said. And finally, the "I wish I'd known" post. There was, as with the open letter, a lot that I felt I needed to say that I perhaps never had, at least not on the "public" stage of my blog. It felt good to get it out, even if difficult to do so.

What didn't I enjoy? There was nothing, apart from reading people's struggles and how hard daily life is for so many wonderful people. Don't get me wrong, their blogs were wonderful, but I hate hearing about people struggling, especially good people, who so value life, and I haven't found one person participating in HAWMC that doesn't seem like a truly good person.

So once again, I say hats off to you WEGO health! And a huge THANK YOU and GREAT JOB to all who participated. It has been a pleasure, and I will be back next year. In the mean time, I hope those I've gotten to know through this are able to keep up with each others tweets and blogs and just each other in general. The stronger we are as an activist community, the louder we can raise our voices, get our messages out, and work to educate and erase stigma. And really, to me, that's what being a health activist is all about.