Categories
Cool Links / Clicky Linky Fibromyalgia Games Health Too Long For Twitter

Couple of Thoughts This Halloween

 

First thought:

I again surveyed my blog land, and I have about 60 draft pieces that I’m trying to edit to post. With my neurological and physical health issues, I struggle immensely to get the wording right before a migraine hits or dizziness/nausea forces me to leave the computer screen.

My goal will be to post at least one a week and CONSIDER YOURSELF WARNED:

  • I am lowering my self-editing in order to get the thoughts out before I lose them. This blog has turned into more of an online journal than originally intended;
  • I need to keep posting to the outside world to stop feeling so isolated from it. Personal in nature and likely emo at times;
  • There will likely be multiple and unrelated topics within one post. I ache for brevity;
  • If you’ve not had a comment approved here before, I have to Allow it to be visible on my page. I don’t gather lists or info to sell or use either nefariously or for the Greater Good. (Morally and also, “Rawr!”);
  • My site, my rules.

Second thought, which I also posted in Twitter and Facebook:

Dunno where, but I may do an chat as a movie/game lover w/limiting health issues. Do Creators even realize when they deny their loyal fans?

I’m planning on something super short and solo, since I can’t wrangle moderating the discussion and/or Google+ Hangout, which is where I’d do it.

On this subject, please direct responses to me at VivMuse@gmail.com, as my hope is to maintain privacy and no spoilers for what the episode may contain. I’ll likely include your suggestions/thoughts/experiences.

I’m really just wanting to get the word out there, since I’ve only seen one Creator in my social media circles offer up something with folks with vision and other accessibility limitations in mind. I find myself bringing it up (likely too often) on SpecFicMedia.com Presents: Consumption ‘Cast, which is a weekly attempt to join hubby Chooch and friends P.G. Holyfield and Christiana Ellis. Last night it occurred to me that Creators, especially of visual mediums, might like a few experiences to help widen their audience of prospective future fans.

(If I get my IT guy in to help with the running of the show, I’ll consider guests, too and other than those in my dream cast, responses VIA EMAIL will be first considered, if and when I do this project.)

Related thought:

The Creator thinking outside of the box by designing a game with Accessibility in mind is the very talented musician and game designer, Russell Collins. His successful Kickstarter for his game, “Tears of a Machine.

I backed it and I’m hoping to do a review after I play with some friends (possibly recorded for posting). I’m so very excited to try it, as J.R. Blackwell and Jennifer Rogers are also a part of the project and I’ve LONG been fans of theirs. Check it out!

Third thought:

 Happy Halloween!

May your fun be safe but skurrrry! Our Housies are all sick/just getting better, so healing vibes, prayers, or sacrificial meatballs to the SMitS would be greatly appreciated. It’s a super fun night in our home, and I’d hate  for our Wee Housies to miss out on any planned fun.

Wee Housies' Halloween excitement = each of my departures via garage until it comes down, since it is now the perfect hiding spot for real spiders.
Related Thought:

I’m linking to a segment on The Daily Show with a fave new comedic actress of mine Kristen Schaal. I loved her on Wilfred and 30 Rock, AND she does/did voice work for many of my fave animated movies/TV shows, like Gravity Falls (voice of Mabel, my spirit animal) and Adventure Time.

In the segment I link to (WARNING: NSFW or with kids in the room unless you want to spend some time explaining the whats and whys of a vagina costume.), she chimes in on the annual sexy-female Halloween costume debate and presents THE best sexual female costume EVAR. It went up for auction later to benefit a charity, so if you just want to see the picture and skip the interview you can do so by clicky THIS linky.

Yes, I wanted to own it. No, I wouldn’t have ever worn it out in public, tempting as it would be…

Fourth thought: 

If I am able to type coherently tomorrow, you’ll learn one of the reasons why 2013 is Lucky ’13 for me.

 

Categories
Mental No Whining Too Long For Twitter

Not One Moment More, aka, I Was Raped

Categories
Health No Whining Our Kids

Humbly, I Gripe

I just posted this in my twitter feed:

Waiting for a nerve in my neck to un-pinch and half a dozen hot spots to simmer down enough to get a shower. Especially my hands. #IAmAlive!

As soon as I hit send, I have an image and a conversation pop into my mind from errands with my son T (formerly LT).

We were clearing up his confusion about my health issues. What I have and what it means. Why I don’t have a cure that lets me return to ‘normal’ life. Fun stuff like that, but with the extra sting that comes from knowing you’re talking with someone attuned to the plights of others.

I had just finished explaining as we pulled into my parking space and hung my handicap placard from the rearview mirror.  I had just gotten to the part where I offer honest comfort — Yes, I have daily pain and I rarely get a total break from it. Yes, it’s maddening (Psychologically, to be clear. Anger worsens ALL THE THINGS, so I never linger there.). But it’s not cancer, it’s not going to kill me and it’s a hell of a lot luckier than some people have it.

His 16 year old mind was grappling and processing the concepts: anger that my diagnoses are what I call ‘diagnosis by default’; fear and concern at my pain levels; and I have no idea what else might have been going on in his head, as his face was a mask of compassion and worry. I reassured him as best I could that my doctors are vigilant and made sure he understands the scariest stuff I might have has been repeatedly ruled out. I want him not to worry and was taking more time to explain, and struggling how to do so. But then the Universe (or God, the Flying Spaghetti Monster or Not Applicable. Reader’s choice.) made my point for me in a horrific demonstration of humility and humanity.

Just as we were crossing into the store we saw a surrealistic and utterly humbling sight: an elderly disabled woman being helped across the parking lot and into a motorized cart at our local grocery store.  She wasn’t just elderly, she was unable to stand upright. And by that, I mean there was no attempt on her part or the part of her companion to help her stand upright. It wasn’t even considered as a possibility. They were just getting to the motorized cart as quickly as possible, for her to move more comfortably. Although the elderly woman was very nearly bent into a right angle, she didn’t fall. Her skilled companion held her purse, her hand and her other arm to assist in keeping her upright.

One of the first things that smacks you in the face when going through any kind of health crisis is the stripping away of any modesty or humility, so it wasn’t embarrassment I was worried about for her. It was just the saddest thing I’ve seen in awhile, what this woman’s existence was reduced to. Especially since it seemed routine.

And then the thought that always comes, a quiet and shameful whisper in the back of my mind: Thank God that’s not me.

My son and I watched in silence as the duo made their fiercely determined way into the store. We offered assistance but was assured that they were fine and the cart was ready and waiting. We passed out of their way and a moment later, I touched my son’s arm and said, paraphrasing as I’m struggling to remember details beyond the duo.

That’s why I am grateful. I am constantly reminded, as I move about the world with my invisible disabilities, that there are others FAR more worse off than I. And she’s likely grateful that she has this instead of something worse.

So, yes, today I griped. I may tomorrow, as well. I really try not to fatigue my loved ones and delete many things unsaid, because I want to laugh and chase giggles, not revel in misery and complaints. But I’m not going to beat myself up, as everyone gripes about something in both social media and meat space.

But I do so very humbly and with immense gratitude for what it’s not.

And besides, this is my family. What else could a gal ask for? They are bad ass and I couldn’t possibly love them more.

My Family, December 2012

 *bliss*

Categories
Breast Cancer Hauntings Mom Whining

November 1st, In Great Detail

Lots going on, kittens, but I am still determined to clear out my Draft posts. Only relevant ones, natch, and I decided to go from oldest to newest. I flinched and nearly fled from this one during editing, but for reasons I won’t explain here, it is miraculously timed.

The last edit date was mid-November, 2010. It’s very, very stale but I’m powering through it because I don’t want to ever have to remember it in detail again.

Apologies for the scattered nature as I try and capture the chaotic and ancient thoughts to pin them down to the page. I don’t know why I started writing about the bittersweet nature of my wedding anniversary the way I did, but I’m honoring my old draft by way of keeping the format and filling in holes.

I’m also creating a Kamikat Alert to warn when emo is flowing freely. I give this one the highest possible. I’ve been crying nonstop while reading/editing it.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

On November 1, 2002, Chooch and I went on our first official date. The following summer, we became engaged and then my mother told us her cancer had returned. A few months after that, we married. Completely by accident, we were married on the same exact date, a year later, on November 1, 2003. (When I say by accident, I mean it. Chooch would have to confirm, but I think it was well after our first wedding anniversary that we realized that it was a double anniversary.)

In the fall of 2005, my mother was over two years into her second occurrence of breast cancer. Nothing had worked, and as a last resort she had pushed really hard to get into a clinical trial for a new medication that was in its first round of human trials. She was that determined to live. I watched her fight like a battle-hardened warrior, but she couldn’t beat it alone. She needed the medical community to fight for her, too, so she got them.

This chemo ‘cocktail’ was particularly nasty, and while I won’t go into details beyond that, we realized too late it was killing her instead of the cancer, which continued to grow and spread. She was hospitalized in early October 2005 because her body functions were shutting down. At the time, it was just one more hospital trip that I drove her to, in a very long line of them in the few months since I quit school to help her and my dad as they were overwhelmed and I worried for my dad’s health. I am still haunted by the fact that when she walked into the emergency room that day that we had no idea that she would never go home, or that it would be the last few steps of freedom she would ever take.

Her body barely recovered and we almost lost her at one point. She went in and out of a sleepy/coma-like state and lost the ability to walk. She slowly emerged and then on November 1st, we finally got the answer we were bugging her oncologist for – we were told that there were no treatment options. One of us must have asked what was next, if not chemo, because he started talking about “making her comfortable” and “managing her pain” and that he believed she may have as long as six months to live.

As was common at this point, Mom and I were alone when we got the news and after he left us we grieved as you might expect. We clung to each other and wept. I reassured her and she reassured me. I don’t really remember much more of the day. I know we told my dad, but I don’t remember it. I got home that night, and don’t remember much other than picking up the phone to resume my usual evening activity after spending time with her during the day — spend the next few hours on the phone with my siblings and Mom’s siblings and whoever else wanted an update. I knew I was lucky to be able to help her and it was important to me to relay the news, in whatever detail they needed, to family and friends.

The first person I reached was my Mom’s sister. Needless to say, this particular pronouncement required an excruciating retelling of every detail. She knew that I would be on the phone with this news for anywhere from 2 to 4 hours, explaining, reassuring and relaying requests and information to and from my Mom.

Mom’s sister offered at some point to make the calls so that Chooch and I could find some time to celebrate our 2nd wedding anniversary, which was also that day. I was hesitant, but also in desperate need for a reprieve from it all.  I agreed and she promised to call my brother and sister as well as her brother. I didn’t know how much I needed to not be the messenger of this particular message any more, until she moment that she took the task from me.

Tangent: I can still remember seeing the bag of candy she had on her hospital table as we talked about what the oncologist talked. The day before had been Halloween, and she’d wanted to have candy to give out in case any kids that were stuck in the hospital were trick or treating. To my knowledge, the only trick or treater she had was my son L.T. He was eight years old. Once in his costume, we went to visit her again and she loaded him up. When I looked at that nearly full bag of candy the next day, I was thinking how impossibly wrong it was that her last Halloween was spent in the hospital. She always loved Halloween and the joy it brought kids, all kids. I still wonder if that thought occurred to her, too, the next morning as we hugged, cried and tried to make sense of it.

Back to my wedding anniversary night, and not even an hour passed before I got a call from my sister. I don’t even think we’d had time to decide whether to go out to dinner to celebrate or order in and coccoon. My baby sister (9 years younger) was crying inconsolably from my aunt’s call. Some of the information got confused and it scared the living hell out of her. At the time, my sister was living with her husband was in the Army and stationed in Texas while all the rest of us were in Virginia. She carried a lot of guilt about this, and it’s possible she still does. I really wish I could take that from her. Mom was over the moon that my sister was starting a new life married to the man she loves, rather than sitting in the hospital room, watching as she wasted away. Their mother/daughter bond was so strong, she never once questioned my sister’s love or loyalty. In typical fashion, Mom saw beyond herself and could only grin with joy for the happiness sis found and still finds with her husband of now nine years.

But when I heard the terror in my lil’ sister’s voice, I was immediately shamed. Yes, of course, I realize that I was entitled to a night off to catch my breath and stay sane and have some joy for ourselves. Just not at this price. I was grateful that she called, as the thought of having gone off for a romantic dinner while she sobbed desperately would have haunted me forever. Chooch and I agreed that it was more important that I untangle the information. I don’t even remember what exactly it was that upset everyone, it’s too deep in the shadows.

I soothed my sister and called my brother. Sure enough, he was reeling, as well. I again went over all the information and gave reassurances. I then called my mom’s brother and cleared up his questions. Finally, I called Auntie, to reiterate the information to her to make sure she understood, because what she relayed wasn’t completely accurate. I was frustrated, but never at her. After all, she’d just found out her big sis was really and truly dying now, of the same thing that took their mom and their grandmother before that. Her intentions were the very best and I remain grateful for the love she demonstrated by trying to give me a night off.

Hours later, I finished the last call and vowed to myself to never delegate that job again. Somehow, when there was something that needed to be done, I was able to push my fears and horror at what I was hearing and seeing to the side and get things done. Maybe it was because I was the one “in the trenches” with Mom, and in every way we were at war. It was every day.

A few days later, my parents celebrated their wedding anniversary. My dad snuck a bottle of wine into her hospital room and they had as romantic a dinner for two as possible. It was hard, lifting the mood before I left, but we all did our damnedest. I can’t imagine how bittersweet that dinner was, and I love them so much for celebrating their last anniversary.

Do you want to know what I think was the hardest? The cancer was already in her bones, had spread to her Mom’s skull, and we believe, to her brain. We aren’t sure because the scans and most non-life-supporting testing stopped. When it’s terminal, why continue putting her through it? We already knew from DNA testing that it was the breast cancer from 1991. It had returned and was in her colon, bones, stomach and skull. We knew she was going to die, just like her mom and her grandma had, from breast cancer.

Our suspicion that it spread to her brain was because she started losing memories, when her mind had always been sharp as a tack. Just another horrible degradation before she dies, why not? Grateful that you still have your mind while you’re dying from cancer and unable to walk? Not for long, with this disease. It’s when I first got a taste of the cruelty of a failing memory, at least as I experience it. You don’t get to choose who’s face you’ll forget. Hell, you don’t even get to remember that you forgot them to apologize later!

But the possible spread of cancer to my mom’s brain was confirmed, in my mind, by her question upon my arrival one day. The only silver lining was that LT was not at my side as he frequently was, since it was a school day.

Her question? When her oncologist would be coming to meet with her about resuming her chemo? The cancer was growing unchecked while we did nothing. Would I call him to her room to discuss it?

I froze. I blinked. The words made no sense. Wait, I thought, what’s wrong with my brain? Nothing. I just couldn’t accept what her question meant. Tears sprang to my eyes. She didn’t remember the death sentence she was given, weeks earlier. I don’t even think I took a breath.

I wanted to say, “Okay, Mom. I’ll get him here as soon as possible. Want a pedicure? How was breakfast?” Deflect, distract, redirect. Sure, it would be a lie. But it seemed like a kindness. Maybe she’d remember on her own? Was that kinder? Maybe, but I feared what would happen when she found out the truth. In my mind, it was more cruel to waste what little time we had left with deception and lies. She took great pride in being a strong woman. She hated lies and had never been a delicate flower in need of babying. She was NiNi, Warrior Queen, and she hid from nothing. Khaleesi, would’ve been more fitting, if she’d known the reference.

Yet… silence. No words came out. Just her looking up at me with those beautiful, trusting eyes.

Ah, yes, another blow, just so. I immediately understood. Our roles had switched. She was the innocent and helpless one now, and I was the one in charge (by family agreement) of protecting her. Keeping her safe. Casting out her fears. Comforting her.

But, how? She was my touchstone and my source of unconditional love, my central support beam my entire life. She was my mommy! Then, when I needed her more than I have ever needed her, to be stronger than I could ever hope to be on my own, I couldn’t reach for her hand to comfort mine.

In my head, I screamed, cried, kicked and fought against it all.
I refused.
I would not do it.
No way am I strong enough.
Nope, the doctor can come back and tell her.

Instead, I found myself holding her hands in my shaking ones as I told her, again. We cried as we had the first time, because to her, it was the first time. I don’t even know what I felt. I just curled up with her on the hospital bed, tightly clinging to each other, with vigilant and respectful eyes checking on us from the door from time to time by the palliative care staff. We grieved again.

And when she asked a few weeks later, I told her again. It’s foggy after that, I don’t know how many times I had to tell her, in total. I’m grateful that I was there for her, but she was drifting further and further away from me, one shimmery silvery wisp at a time.

By way of bringing it current, and possibly to a point (*gasp*), the intervening years has let go of our anniversary as a bittersweet day. I do think of Mom, but instead of sadness and tears from the hospital room, I now see her laughing and smiling with us at our wedding. I picture she and Chooch killing the bottle of Dom when my parents toasted our engagement. (Damn, she was adorable tipsy, although I rarely saw it.) I remember her teasing me that Chooch was using me to get to her because they were the true soul mates — straight faced and with a wickedly cocked eyebrow, as only she could do. And letting me know what I needed to know most, because she knew the three of us (my two sons and I) better than anyone else: that she approved of him as my husband and as step-dad to my sons.

She told us in a hundred different ways that she thought he was right for me/us, but most poignantly when she asked us to move up the wedding to ensure she would be alive to attend. We did, and she did. It was a chaotic and magnificent day that I treasure all the more because she was there. She was beatific, at peace over my sons and I with Chooch in our lives and the knowledge that my sister would be soon married to the love of her life. My brother and his wife were happy and strong. Everyone else was healthy. What more could a mother need to know before she dies?

She passed away in the wee hours of January 13, 2006, a little over three months after that walk in to the emergency room. She was 62. She and my father were together over four decades. She had three kids, seven grandkids and, since her passing, three great-grandkids. She wrote, painted, baked, worked gardened, taught, played and gave hugs that could make you forget why you needed one in the first place.

 

I’ve reclaimed November 1st as the celebration of love and family, as it’s intended. Chooch and I celebrate our love, our bond and our marriage, with number 10 later this year. Times are chaotic, but our love is like Valyrian steel baby, folded a thousand times in fire. Besides, Mom would kick my ass if I let anything get in the way of celebrating our anniversary. She certainly set the example on that one.

There are several songs that are intertwined with Mom in my mind. This is one of the most powerful. I didn’t find a video by Colin Hay for the song I first heard on the Garden State soundtrack, but this is my favorite of the fan submitted videos I viewed. I almost didn’t include it for fear of being accusations of being maudlin, overly sentimental or pity seeking, but…

Fuck that. I really miss my Mommy today. I’m going to treat my broken heart to a good cry.

“I just don’t think I’ll ever get over you”
Song by Colin Hays, formerly of Men at Work
Video submitted to youtube by EmjayTulip.And as always, Mom was right. Chooch is my soul mate. No one else could have given my laugh lines and wrinkles in the intervening years.

Categories
Fibromyalgia Health Too Long For Twitter Whining

Distortion Filters Don’t Mean I’m Wrong

 

Body
Fibromyalgia is one of my diagnosed Health Blahs. I won’t go in to detail here other than this focus – a kind of pain distortion. There’s a neurological aspect of Fibro that allegedly “turns up the volume” on pain.  It’s a sort of biological input distortion filter that is described as a stereo having the volume tuned up too high. This is a confusing concept, as people are likely to dismiss my pain, thinking it’s all in my head. But I assure you, the pain is real.  And for me, it’s not even measurable, as in, “The pain should only be at a 4, but we can add another two points for Fibro distortion, for a total impact on the patient of 6.”

Whether caused by the immeasurable “volume” increase or actual pain, it hurts just the same.

Why?

Because pain is pain is pain is pain. 

The frustration is tremendous as what I report to the medical community sometimes gets taken apart and evaluated like most others don’t have to tolerate. “Oh, it’s the Fibro amping up the pain, you’re ok.” Or, “Keep in mind that Fibro distorts the pain, what is your pain level separate from that?”

Okay, how about I ask you, “Knife or spoon? You are going to be stabbed with one, and you get to choose. Obviously, you want the one that hurts the least and/or does the least damage. So, which do you choose?”

A spoon will hurt more but won’t go as deep, as easily. A knife will cut an artery, but how much pain will you feel?

Does it matter?

Sometimes, yes. In my experience, the standard 0-10 pain scale (smiley to pained faces on a chart I’ve seen in every ER and hospital room) works like gangbusters, especially when you have a doctor that will actually spend more time listening than their typically double-booked schedules usually allow.

 

Mind

About a year before that diagnosis, my therapist T-Pain, told me I have distortion filters on things I experience, both input and output, that impact my emotional well-being and create conflict with beloveds. The destructive power of these filters is immense and also far more common than I previously believed possible. Meaning, I’m not the only one with them, I’m just the only adult I know that has had it named (and admits it).

Essentially, I hear things (input) in such a way that I attribute all blame, shame or guilt to myself. All bad things are my fault. I do nothing well, and I am a constant disappointment to those I love or those foolish enough to love me.

It also means that at times I have problems communicating (output). My reactions: awkward, stammering, emotional, clumsy, partial, incoherent or circular in logic. The higher the stress, the worse the reaction.

Over a year ago, when my therapist helped me understand what I’m processing isn’t always what people intended to convey, I was thrilled.

Let me tell my loved ones, I thought, so they may allow me a bit more processing time to ensure that I’m expressing what I intend to express. Communication will be easier. Everything is based on communication, so everything will be easier.

A whole new world promised to open in front of me.

I now call shenanigans. Get the broom.

You see, in trying to leave a better footprint behind me, I have inadvertently opened myself up to having any misunderstanding or differences of opinion can be laid at the feet of my faulty filters. I don’t believe it’s intentionally unkind or dismissive, but it remains extremely insulting.

It’s as if learning that about me gives others some sort of legendary weapon in discussions. After all, it’s far easier to close the issue without examining anyone else’s behavior, because, hey, here’s a trump card that I’ve handed over: “She’s upset because of the way she neurologically processes things, not because of anything I did or said. There, that’s settled.”

It’s become a litmus test for me, finding how different people try or don’t try to connect with me. I don’t even bother telling people about my distortions at this point, since so many people have them but don’t see them or understand what they are or how to start the slow process of disabling them. (Hint: You can do it.)

 

Soul
It’s amazing how much easier your path can seem when you realize many around you are on the same path, trying to overcome their own stuff. Everyone has their own distortions, I’m finding. Since there’s no point in waiting on judgment or acceptance from others, I’mma just keep moving, doing my own thing, my own way. T-Pain says I can’t go wrong.

Call it chasing silver linings. (So fun!)

Call me Little Mary Sunshine. (Mary’s a lovely name!)

Whatevs, I’ll just keep trying to get through life with as much love, bliss and laughter as we can Katamari.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

In that vein, check out my adorable Great Niece #2, Baby A. She’s about a month old and I get to meet her next month when Lil Momma (my far off niece) returns with her family for a visit. Oh, the excitement!

100% All Natural Burning Kyooootness
100% All Natural Burning Kyooootness

 

Categories
Health Whining

Hope Fatigue (and Silver Linings)

I have health issues. This is not news. I call them my Health Blahs and being overweight my entire life, I’m not terribly surprised, other than the timing. No, the real surprise lies in how much can hit the fan in just a couple of years. I remain tremendously grateful that I’ve had only chronic conditions diagnosed, as opposed to life-threatening or terminal. I know I’m lucky and I count my blessings to the point of what must be near-tedium for those around me the most.

Chasing silver linings, I call it.

Some new health wrinkles have made life super interesting for the last six months or so. Because of the new onslaught of testing that they triggered, I recently received news that a biopsy was negative, all clear! I was thrilled and let my terror level on the issue drop almost completely. One less thing to prevent me from getting back on a physical training regimen.

There is nothing new wrong with you, thank God. Keep your hopes up, everything’s okay! It’s not cancer!

*deep, cleansing breath*

Then, instead of the usual skip in my step and a lightening of an invisible lead weight, I slumped under the weight of utter and complete exhaustion. The good news just kinda broke me. It was very confusing. I thought it was one of my wacky neurological reactions by way of relief, but I found myself unable to shake it.

“Great, now I have to be happy and hopeful again.”

The thought of bearing the weight of hope again was a surprisingly daunting task this time. And obviously, this reaction is a curse amongst those of us that follow the path of the Silver Linings.  You give people, places, things and events the benefit of the doubt, every time. You respectfully give encouragement where it’s allowed. And whether vocalized or not, you forgive. Give things a chance to work out, even if not exactly in the way we hoped. When in the darkness, allow yourself to see the silver linings and you’ll often be blinded by their brilliance.

And life is really damned short. I know I say it all the time, but it really, really is. Tragically short, no matter how long you live. How could you not seek light in dark times? Find the silver linings, name them and follow each of their fragile trails. Nourish them and feed them hope. Otherwise, how can you even breathe in the universal horror and aftermath of so many tragedies and hardships of humanity, as well as in personal relationships in recent years.

Yes, hopes get dashed. I don’t count disappointments like I do blessings, but sometimes wonderful people do unkind things. Sometimes test results don’t go your way. Sometimes things go wrong, with or without a person to blame. And sometimes, you get tired of re-lighting a candle that keeps getting snuffed.

It’s the first time in my life I’m feeling a real urge to go dark, as in, take a break from Hope and Silver Linings and all the disappointment that they bring. Take a break from social media and the boost it usually gives me – less isolation to make me cray-cray and what-not. Skip Balticon and other gatherings of friends. Hibernate, until the stings are faded. But, even in the comforting lull of solitude and quiet is something trying to kick me out of the dark and back into motion…

… captivating high-pitched giggling from upstairs; plans for LT’s summer visit have solidifying; a happy and smitten; dreams of a visit by J; opportunities for time with far-flung family and friends which guarantee face-breaking smiles and joy; making new friends; countless loving gestures and endless patience from my husband; an increase in time with  joyful little kids; unspoken dreams and downright plotting; plans for seeing my distant niece and the family she’s made; glorious spring days with my husband’s hand in mine as we watch Kaylee frolic like a puppy…

Realizing that even when the day is ending with the sun going into hiding for another night, we are still given a view that has inspired countless people with its beauty, a spectacular image to carry into the darkness with us. Burned into retinas at times, and others, it’s just the idea. The knowledge of what awaits them if they care to turn their eyes towards the upcoming dawning light. The darkness is bookended by a brilliant show of nature, eternally promising light and warmth. The night is long enough that we appreciate dawn when it comes, and short enough that we can easily hold the memory of sunlight against the dark night. You don’t even have to have hope for it to happen. It just will.

Going dark would be a real struggle, is what I’m saying. Isolation speeds the process, but it’s not a fun one to live with, and I won’t do that to Chooch or our Housies. And I can’t when I’m around our kids. If only it were the right time of year for a good sulk in a cave somewhere.

Instead, I’m setting limits on time and expectations (more on this when I’m feeling less fragile) and counting spoons. My shrink had to remind me to save one each day for myself. Can’t believe I forgot about that, but I’m now saving two each day: one for me and one for Chooch. And when we are with our sons, I’ll also save a spoon each for them. I mean, if I can’t take care of those that give me a reason to push myself out of the dark, what’s the point?

And yes, I’m exhausted, but as I brace for another appointment, I’ll sling my bag of Hope back on. I always do, and with beloveds like mine, it’s not actually that hard. Just…

urrgggggh

Categories
Fibromyalgia Too Long For Twitter Whining

The Spoon Theory by Christine Miserandino

Finding myself in a whirlpool swirling with information from recent web surfing in Health Blahs (my name for my mixed bag of health challenges), and a few have really stuck with me. In my last post, I shared a find on techniques to improve memory and fought with myself about doubling up the goodness. I chose to split the two fave finds from that excursion, mainly to allow myself  more time to digest the second post.

The Spoon Theory, by Christine Miserandino has been percolating for a week now, but I am still thinking this is a pretty damned fine way to explain the daily challenges, preparations and planning I need to be comfortable and less needy for whatever may come. Even my therapist, T-Pain, as I call her, suffers from chronic pain and couldn’t find fault with it. To me, the explanation just sings many of the concepts I can’t express. 

Obviously, you have to suspend disbelief that you have any tangible way to predict with any certainty what the day has in store for you. Preparations are made and plans are laid to minimize chaos wherever possible. Much of the time, precautions taken end up not having been necessary. But, many times it’s just having done the preparations that gives comfort, rather than any actual need having been met.

Familiar folks: You’ve heard my whining before. Any new folks: I struggle with pain daily. Many that I’m close to also suffer from chronic pain, or love someone that does, and there is a sort of short hand when talking about such things. Traditional follow up questions to someone revealing a new health issue are suspended with an immediate and sympathetic acceptance of the news. This is typically met with a wave of the hand or a “Yeah, yeah, yeah. Anyways, …” It’s a shared experience. No filler words needed. Yadda yadda yadda.

But for those that don’t really get it, I find that it is tough to find a common language to have more than a superficial conversation without struggling to explain a response that is not standard.

As for what I mean by struggling to explain, for example, being fat (No platitudes, please? We’ve grown beyond that.) and not talking about being miserable/ecstatic on a diet and/or exercise program of one kind or another, I find that I am typically greeted with a sympathetic/energetic encouragement to get back into that cycle. If I, in a moment of honesty to strip away a lengthy avoidance resulting in no real conversation occurring, reveal that no, in fact, I really shouldn’t run. As in, I’ve been advised against doing the healthiest and most successful, enjoyable exercise I’ve ever done, I almost always regret it. People don’t really want to go there – to hear that will power can’t always get you through things. It’s terrifying to think, after a life time of doing, doing, doing. So, I find myself greatly censoring conversations to avoid going into that whole realm of explanations and we all have a good time.

It also appears with the standard, societal question, “And what do you do?”
*cringe*

Categories
Fibromyalgia No Whining

Where’s My (Memory)?

Memory is an extremely problematic thing for me now. Even worse is the typical belief that if it were important enough to me, I would remember whatever it is. I submit the novel notion that I have no choice in what I remember and what is forgotten. It has nothing to do with my adoration or loathing of the subject.

In my great frustration, I glommed on to a new-to-me blog, Chronic Curve, linked by dear friend Andrea, who suffers fro many of the same health challenges as I. The blog is written by someone battling the effects of RA, which I do not have. I have Fibromyalgia. But the similarities in our situations are astonishing and I can’t stop reading the posts. 

So, memory, right. One of the posts has a number of pointers for those dealing with brain fog, fatigue, pain and cognitive problems. In reading it, I believe the tips useful for everyone, particularly those in a place where they must retain knowledge for current income or a diploma (future increased income). The learning techniques are fascinating, and I intend to try to remember to use them and report successes, if any. I’m already working on the Method of Loci to hopefully relieve a social issue of mine that has recently worsened. *fingers crossed*

If you do give it a try, report back? Pretty please?

Categories
Anti-Health Health

To the ER! Again? Ehh…

Another month, another ER trip. Worried because ankle is still excruciating after sprain last month and YES, I know I overdid it. That’s part of the price of going to CA. Want to spend ALL the time with everyone. Also, I suspected some sort of sinus infection/bronchitis. All is well, home now. Love the staff at Inova Loudoun hospital. Ankle still not broken despite my best attempts, lulz. Osteo dude next week with a dash of antibiotics and a trip to an ENT for my sinus issues. Thank Glob for good insurance! And thank Glob for Chooch for providing it!

It’s a beautiful, warm-ish winter day in Virginia and I’m tucked back in bed with my flannel Tink jammies. Hubby is hard at work on a day job project by my side. Smiling as I view my friends’ photos in Facebook at all the love there, and must send blessings and protective vibes to ALL! Even if you think such things are fufu dust, you are still under my protection! MUAHAHA, you can’t stop me!

Miiiiiiiiissing our sons and hoping their weekends rock! xoxoxo Brush your teeth *muah* No texting at the table (((hugs))) Love you!

And yes, pain killers. In case you were wondering. Vicodin.

Weird revelation? This was the first medical emergency thing that I didn’t pray to and focus on my Mom. Even weirder? Tomorrow is the 6th anniversary of her death. Don’t know how I feel about either part.  That I didn’t reach out for her energy or that I was avoiding the acknowledging the anniversary.

It’s healthy, right? Because it feels disloyal.

Recuperating with Finn and Jake. A fave eppy: I Remember You. Brings a tear to my eye hole, it does.

Later, mang.

Categories
Health Uncategorized

*blink*

I’m thinking out loud here, sharing a few experiences during this, Breast Cancer Awareness month. It’s been a blur the last few weeks, as we face many unknowns on many fronts, nearly all in the control of others, but the constant thread throughout the year has been cancer. Not just my own brushes with it as doctors run various tests and even, just this last summer, for our middle son, LT. Nope, MANY others that I love have dealt with the terror of cancer recently– a staggering and heart breaking number.

And normally I wouldn’t write a confessional like this for fear of poking at anyone’s wounds on the subject of cancer. So if you’re one of those people, you’re just going to have to stop reading here or continue knowing that I’m raw and writing with little censoring.

I’ve been digging in deep in therapy, facing my cancer fears and, as my Momma taught me long ago (after 3 known generations of a breast cancer death sentence), exerting control over it where I can:

  • by vigilantly performing breast self-exams;
  • by staying up on new possible risk factors;
  • ensuring that what I consider to be essential dietary requirements are met;
  • never, ever missing an annual physical or mammogram.

So, as it happened, this year my annual exam best worked out on my 43rd birthday. It was just one of many things that defined the day in a special way, particularly because of the love and patience my husband showed me.

While at the appointment, I was given an order for a mammogram. I have them annually and have for years. I don’t fear them, I welcome them. Find the little fuckers before they can spread to my lymph nodes, because Holy Hell you don’t want to happen.

I put it with an order I already had for back x-rays, deciding to make the appointment within the week.

Then I got a call from my doctor’s office, relaying my extremely trusted doctor’s need to discuss abnormal results from the pap test portion of the exam. I wasn’t terrified, because it was the second one I’d had, the last being 15 years ago and the follow up testing and annual testing in the intervening years have been normal. I was also terrified, because it was the second abnormal and if it had been missed all this time then it had 15 years to secretly fill my body.

*blink*

I already had a full day of laundry, and shopping for baking and an already too-full To Do list, but the plans went out the window and the race to see her began. She explained it was likely nothing, but she doesn’t mess around when it comes to me and reproductive cancers. After she opted for a pelvic ultrasound, I snatched the order for that test and the other two and dragged my dazed and raw self to the imaging center I prefer. (A phrase I hoped never to say.)

The ultrasound, with a fresh 32 ounces in my distended bladder was unpleasant but over quickly, and with great relief I headed off to tinkle when I was then told of the shocking (to me) internal component that I was not warned of. Again, ever seeking more information on life-threatening matters, I leapt into the necessaries, and was beyond relieved when I was given the all-clear on Monday. (Huzzah!) In related news, my left ovary is bashful.

One down, two to go, and I don’t really know what to wish for regarding the back x-rays. That left me with the mammogram results to sweat out. I try to act like I wasn’t worried, but I always am. After leaving my doting husband, and his comforting hand in mine (Thank God for Chooch), in the waiting room, I liken the feeling I get to being a little girl reaching up for my Mom’s hand to guide me through it the rest of the way. Luckily, although she died almost 7 years ago from breast cancer, she never disappoints. (Thank God for Mom.)

So a phone call from my doctor today, followed by a notice from the imaging center that there is again an area of concern in a new location, and I have to go back for a breast ultrasound and what I think of as a targeted compression mammogram. I’ve had multiple ultrasounds over the years and one targeted compression mammogram. That year, I had photographed the room, the machine and different steps involved in the hopes of de-mystifying the mammogram experience of an ordinary patient.

Before I could even edit the photos and write the post, I had gotten the notice of the area of concern and need for further testing. Even having gotten the all-clear, it felt like tempting the fates to post it. This year, I again stopped myself from taking my camera to finally write a blog post. No jinxies.

*blink*

Am I getting better at handling and processing terrors? Is therapy helping? Or, with all the other nasty surprises the year has brought our direction, am I just burned out?

Tomorrow I schedule that test, hopefully Monday. Now, how many tests can you have come back negative before the odds send home a positive? As in, “You have tested positive for cancer.” Wait, don’t tell me. I don’t want to know.

Even scarier, what if something is wrong and I hadn’t gone for my annual exam and/or mammogram?

And yes, I know, everything is going to be fine. In fact, I’ve even been able to find a thin sliver of a silver lining, if you can believe my gall, if the worst is true. So, there’s that.

Please, everyone, if you haven’t gone for your annual physicals yet this year, schedule them now. 

There is more than simply breast cancer to be vigilant against, Dear Reader, so give yourself a fighting and well-informed chance on anything you or your doctor are concerned about.

I don’t mean to diminish what is likely a hefty co-pay, but I would certainly prefer knowing that a loved one nixed gift giving over the holidays in exchange for a health screening.

Promise you’ll at least think about it?

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

P.S. For those expecting a Dr Who reference, here ya go — if I do get breast cancer, send the Weeping Angels my way if it starts to win. Cuz I have no intention of being the 4th generation with that particular cause of death.

EDIT:
Everything came back negative and WOW that’s a long and gnarly post.  Ah, the wonder of me.