Categories
Health Uncategorized

Health Blahs Update, aka Dragon*Con 2012, Part 2

I think it’s been awhile, and I have recently been known to attempt to steer recent conversations away from my health issues. I’ve done okay, with one regretted exception, where it was too much honesty for too long and I hastily began the backpedal out of health blah territory and back to the fun light stuff I went to Dragon*Con for in the first place.

History of what I call my Health Blahs (over the last 3 years): Sudden onset of vestibular migraines (and associated neurological symptoms), neurocardiogenic syncope (fairly common – I may faint under stress. Like approximately 70% of the population, reportedly.) TMJ and a Rocky Mountain Spotted Fever diagnosis (4 week RMSF treatment, no clue what to expect from it in the future).

Earlier this year, after a massive increase in pain, fatigue and many other symptoms, primarily pain hotspots hitting pretty much any joint I could identify at one point or another, I was diagnosed with Fibromyalgia. There has been concern over the extreme pain and loss of flexibility and mobility in my hands and feet, and after x-rays gave no clear answer, I had an MRI of my right hand to try and diagnose the frequently painful periods in both hands and feet.

The MRI revealed that there is no evidence of rheumatoid arthritis in my right hand (Praise Baby Jesus); we don’t really know what’s causing the pain in my hands and feet, but some pain in my right hand may be attributed to a cyst I am to get checked out (wheee!); I’m getting physical therapy and a safe start back on the path to (crossing fingers) 5k’s and half-marathon training (Dammit, Mur. I’m not giving up.). I miss running and I intend to have another 500+ mile year. Soon.

So, in general, I had more tests run, have more tests being run, have extreme gratitude to my husband for providing excellent health insurance for us and our kids, have far more interesting Dragon*Con posts and no more real information but lots of options still open to me.

While some of these issues are chronic, they are not life-threatening. Sadly, I have many examples of those less fortunate than I to reflect on, and I am fully aware of how lucky I am and will take my hefty dose of pain over the things that others are dealing with health-wise ANY day.

I remain flabbergasted by the gestures of love and support I get from many that I have met once, two hundred times or never (in meat space).
For many reasons, those gestures pull me through some pretty dark stuff so if you think I’ve not noticed a kindness, know that I have.
I am unendingly uplifted and grateful for the kindness of the singularly amazing and fascinating people that let me call them friend.  Thank you, to those it applies to. Special thanks to Roomie For Life, P.G. Holyfield and my hubby. It’s not easy rooming with me, but they spoil me anyways.

Now, it’s really hard to write a self-indulgent, whiney post like this, even though the hope is to remove any need folks may feel to ask after my health. I am thrilled when it doesn’t come up, although I am generally happy to answer questions as long it doesn’t linger too long or turn too dark.

When you see me, I may have one or both wrist braces on. Same may be true of my knees or ankles. I may be using a cane. I don’t want to need them, but I’m accepting them as necessary tools for me right now, on occasion. And while I’m trying, I’ve not yet hit the “you have to be able to laugh about it” stage. It’s all still ill-fitting yet, but I’ll try not to spill Awkward on you.

I have to take breaks, the more strenuous the activity, the more often. That’s why I am so rarely out and about in the crush of the big events at conventions and spend a lot of time resting in my room recovering from or hoping to prevent some pain or symptom or another. Sadly, as was driven home again last Saturday, all the rest in the world won’t make my body able to get up and moving, but I fight really hard before giving in on time with friends.

But, I am fine.

Really.

Now, let’s get back to the giggles.  M’kay?

Tomorrow, Dragon*Con 2012, Part 3: Magical Friday, or, How I Met Jewel Staite.

Click here for my previous post on D*C ’12.

Categories
Family Friends Hauntings Mental Too Long For Twitter

An Epiphany Triggered By Friends?!?!

I am loved.

Deeply.

By more than one person.

It doesn’t matter who doesn’t love me, so I will no longer waste time on that.

It only matters who does love me, on some level, regardless of whether marriage, friendship or bloodline is the reason for our connection.

I don’t even care if it sound like bragging. I’ve spent my entire life talking myself down and struggling to find anything positive to say about myself. So, if it is bragging, fuck it. I’ve earned it.

I am going to now cast a suspicious eye towards all my insecurities, self-loathing, shame and guilt and do an honest assessment. If I’m as awful as I think, why do such amazing and fascinating humans think I’m not? I trust their opinion on everything else- events, movies, books, foods — why not their opinion of me? Oh, right… a life time of conditioning (according to T-Pain, my therapist) leaving me with the core belief of, “I am not, and never will be, worthy.”

I have grown bored with carrying this belief around and constantly measuring myself with it. So I now choose to measure my inner beasties by the same logic I use when considering other people, rather than the much harsher scale I use for my own actions/inactions.

I’ll also be granting myself benefit of the doubt, as I do for everyone else. Hell, even those that have “wronged” me whether in person, verbally or on the ‘Net.  I pick up on things that people think I won’t, and I know more than people think. Still, I’ll be choosing my battles more carefully and only expend energy in areas that merit it.

Is it odd that it hasn’t even occurred to me before to give myself the benefit of the doubt? Regardless, I’m not wasting time on wondering why not, I’m just going to do it from now on. Now, it must become the standard. I know my motivations. They are to leave a positive imprint wherever I go. I may or may not be successful, as I am a puny human, but I must try to make things a little better for my fellow Earth-trapped neighbors.

I also choose to be more selective where I spend my time and to plan less. One of the simplest ways to gauge a relationship, after all, is if people make an effort to spend time with you. Not while they are in the midst of a crisis or busy time of their own, but besides that. Friendship is a two-way, sometime three-way (or more) street.

I am releasing myself from the burden of believing it is all on my shoulders to feed and water friendships on my own, except in extremely rare friendships (you know who you are), where I am not the only one that appears to be doing the heavy lifting. I am rich in True Friendship and will not criticize or judge those that don’t reside there. I choose to try and have fun every where I go. I want to laugh as hard and as often as possible and make deep connections with people. You do your thing, I’ll do my thing, and hey — let’s have fun when we’re together, regardless of possible past drama! Life is too short not to be snorting in laughter more than is considered Appropriate.

I choose to make no time for hate, manipulation or lies in my day. How others choose to spend their finite time on this Earth? Beyond my control, so letting it go.

I am humbly grateful for the things that led me to this today, for it is a good day to know. The path ahead appears to be mired in confusion, sadness and chaos.

Luckily, there are some people showing up to help us find our way in the dark, as we have tried to do for them in the past, so we will eventually be right as rain*.

Now, off I go to scale Mt. Laundry and clean LT’s now-empty room. (Sidebar: Boys are gross. But damned if I don’t love ’em!) Counting down to Wednesday evening, when I get to see him again for a few days before he returns to his distant home.

Today Shall Not Be Wasted. **

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

*Note: After typing that long used phrase, I immediately wondered what circumstance “right as rain” came from. Here’s what I found, for those interested.

**And if you are unfamiliar with the humble battle cry of heavenly hobos, I again recommend Mur Lafferty’s Afterlife Series. The quote is, I think, from book 3, called ‘Wasteland’. But you must start with the first one, I insist,  called ‘Heaven’. It has helped me embrace the Universe in a different way since the devastating loss of my mother six years ago. Plus, her phrase, “Turtle Tits” from one of the books, is in my top 5 curse word phrases.

Categories
Breast Cancer Family Mom No Whining Whining

Time Heals All Wounds? Meh.

Today is my Mom’s birthday.  Somehow, the math shows that she would have been 70. It doesn’t seem possible for her birthday and not her to make it to a new decade and new things that the public would allow for her to complain about. Aches, pains, less patience with the horrible people that you encounter during a random day. All the stuff society deafens an ear to, but doesn’t disrespect them for. She would have met her first two great-grandchildren and would be rubbing her granddaughter’s belly in anticipation of the one on the way. It’s unfathomable to me that these beloved children were never held in her arms. Surreal.

I was going to choose today as my first time intentionally not going to her grave on a significant day. (I certainly haven’t made it for every birthday, Mother’s Day, death day and Christmas, so don’t try and paint me with a Sainted Daughter brush. Illness or other issues sprang up and prevented me on those occasions that I did not make it. This is just the first time I made a decision to not go.)  Kind of a tip of the hat to all the progress I’ve made in therapy, by honoring her here instead of at her graveside, where it honors her death, not her life. But LT wants to go, so we’ll go.

As for the title of the post, I was reflecting on how we had to do math to figure out how old she would’ve been. And we did it several more times because the milestone aspect of the year was like a kick to the babymaker. So, I guess time “heals” all wounds, if you mean that you forget just enough to feel a bit guilty. I’ve also recently discovered that I couldn’t remember the final chemo (clinical trials) primary drug name that I believe shortened her life by at least 3 months, so good was it at destroying every living thing in its path, including most of my Mom’s remaining abilities. (No, I’m not litigious, she knew what she was signing up for. But I remain pissed.) I remember it now, but the fact that for even a few weeks, I couldn’t recall it –I was stunned.

Whether because of time or my terrible memory lapses, I’m forgetting things about her. Hopefully just the unpleasant things, but even if I do lose more, there are a kajillion wonderful and loving memories there. I really only need a few, preferably the ones with her arms squeezing me in a tight hug. That and her laughter are the things I miss most. I guess I’ve reverted back to being a little girl where she is concerned. It really is the stuff I miss most. Hugs and giggles from a woman long gone, but wow, did she leave a mark on those that loved her.

I write this guiltily, as I have loved ones that have lost their Moms, too. Some that have been grieving as long as I have and may still be in or just coming out of the denial phase and some who are just starting to fear the grief coming their way.

A little girl, far too young, that has found maternal nurturing in her step-mother, Thank God. I still miss her Mom, tho’, as our friendship was only just reaching full bloom. The young girl is immeasurably happy in her new life, and the memory of her mother is respected and kept alive.

A beloved friend of mine, with the loss of her Mom so fresh that I am at a loss on what to say and can only seemingly give physical comfort. I remember what that feels like when you have a bond as close as theirs, and I remember that nothing anyone could say could soften the blow. All I can suss out to do is hug her a lot and say, ‘I love you,’ as much as possible.

Another loved one, who lost her Mom around when I lost mine, is a Mom herself. She had a biopsy yesterday, so we are praying and waiting out test results. Additional prayers are welcome!

A childhood friend and former sister-in-law has had a recurrence of breast cancer, she’s a Mom of two and their Dad died previously this year. The cancer is spreading quick and I don’t even know what to pray for anymore, other than peace and no-pain for her and her family. Okay, and a miracle that cures her. (Dream big or go home.) My Mom loved this woman, too, and I know she’s fighting for those babies to keep their Mommy as long as possible.  Any positive energy you can spare her way would be immensely appreciated.

If the urge strikes, maybe you could throw out a prayer, energy, vibes, best wishes or whatever you feel appropriate to any or all I’ve listed, or to women or men in your life struggling with loss. It’s pretty fucking ridiculous that I know this many, but in truth, I know of even more fighting for their lives or supporting someone in the fight to survive. Having been a support system during such a time, I know it takes a toll. I’m sending out positive energy, strength and peace your way. And hey, don’t wait as long as I did to get help with all you are seeing/experiencing. It’s a real mother fucker to dig out from under years later.

Tonight we honor her by having dessert first. LT has requested an ice cream cake, and we are picking it up on our way back from Arlington Cemetery. Today we celebrate her life, laughter, joy and love for her family.

I’m the wee one in the middle of the picture. It’s the earliest I have been able to find of her holding me, with my adorable brother happily taking the Big Brother moniker.

The mimosas are indeed in bloom. Love you forever, Pocket Mom.

 

**Apologies for any spelling or grammatical errors. I don’t have it in me to proofread this.

Categories
Family Friends Health Household Our Kids

Communal Living

Every once in a while, I find myself in a discussion about our living space being in another, completely separate family’s basement. And while it was nothing any of us sought out specifically, after almost a year of living here almost exclusively, I have found great comfort and happiness here.

We have benefited financially, paying less than we would have for a living space. And also by sharing communal groceries and shopping in bulk to save money.

We have benefited materially, by paring down our piles of junk into lesser piles of junk.

I have benefited from the companionship. When you had been a mom for two decades and suddenly you are stuck alone in your silent home for almost 2 years, just hearing footsteps in another part of the house is a comfort. There is life here. I can hear it. And so I feel a little less isolated and lonely when trapped inside by my Health Blahs.

Yes, one of my Housies moved out recently. Yes, I miss her terribly. Our relationship remains untouched by distance, and I will always treasure the house because it gave me that deep bond and friendship and several others. Nothing lasts forever, Kittens, and it’s the bonds that last that matter the most. I pray that our friendship continues, but I only have so much control over that. I will grieve it if it doesn’t survive but am learning to accept the fact that no matter how much I want something, I cannot always make it happen. Progress?

In spite of the change and in spite of the chaos that comes along with sharing a home with a family with young children, this is a place where my family fits, at least for right now.  I never know what I’m going to see when I head to the kitchen at mealtime, and it’s usually something ridiculously adorable. Honestly, I feel so much younger for playing and cooking with these little girls, I feel like I should pay them!

Examples:

  • What, Tiny Expert? You want us all to watch while you perform a magic show? Count me in!
  • Now Feral Dancer’s doing a magic show? Yes, please!
  • What, Jen? You have errands to run and want to take me with you? Yes! I get to knock out my errands, too! (I don’t drive anymore.)
  • What, Phil? You want to write a song on your guitar while I’m cooking dinner? Sure! (I’m a lifelong music geek.)

These are all things I wouldn’t experience if we didn’t live here.

I am happy to say that regardless of what others may believe, this is a place where sunbeams and bubbles are chased while others erupt in delighted laughter. Real laughter, to the extent that tears are rolling and/or you get the unstoppable little girl giggle going and end up gasping for air. Children of all ages laugh and play here, comfortably and safely. Of our kids that have visited us here so far, they have been safe and (allegedly) happy. There is always someone to chat with if bored and Mom is down with a migraine and Chooch is at work. There is always a pet nearby with ears just dying to be skritched.

If it is something you are considering, do it with eyes wide open. You will be eating, sleeping, drinking, pooping (everybody does, and apparently mine is the only poo that smells like rose petals!), sick/healing, exhausted, laughing and cleaning up after each other and those that accompany them. It’s not a decision to take lightly, as both sides are made extremely vulnerable for the duration. Everyone’s pet peeve button will get jammed countless times, and compromise will become your motto, as all here have compromised in one way or another to accommodate the others. But in our case, we really lucked out and it was as near a perfect fit as possible. And although the fit has changed now, I remain happy here.

Whether we are here until September of 2012 or September of 2022, I will always treasure my Housie family and our times together, some magnificent and some heart-breaking. But damn you, Laughter, and the wrinkles you bring when one is lucky enough to laugh this much!

Categories
Computer Mental

Whaddya Mean I Gotta Stop Using ‘Absorb Pain’?!

 

So therapy has been interesting. As I hit more and more health snags, hubby’s frustration in various areas grows stronger and I finally take on some losses and some progress on my stirred-up past, we are also surrounded by some of the most important people in our lives going through such pain, grief and turmoil as to be unbelievable.

All of this has caused many unknown Dark and Uglies to surface. Strangely and understandably given the circumstances, my City of Heroes gamer girl training kicks in, and I use the various tools available to me in the given situation to try and “heal” or “buff” the troubled person or animal. For those that never played a Defender archetype in the specific MMORPG I’m talking about, you can find the entry from the City of Heroes Wiki below my blatherings.

Essentially, one of the most powerful heals you can deliver using the empath defender powerset is “Absorb Pain.”  I played the powerset almost exclusively as a “Healer” for several years and learned through many failed Atlas Park sewer runs or missions scattered across the Hollows — that you never, ever take Absorb Pain as early as it is offered (level 2, FFS).

Ever.

Unless you are well-practiced, you are just likely setting up your team for at least one complete wipe, if not countless wipes because you targeted and fired off AP on someone in trouble right before a Vahzi or street thug hit you from behind. Down you went, no longer able to keep your heals going to power the team. No buffs. Nuthin’ but “Sry guys!”  They are disastrous, confusing, hilarious team wipes, if you are lucky and have good team mates. (I was quite lucky in the team mates that we played with the most often and I learned all the most fun ways to end a battle in a cataclysmic way that left us laughing and w00t’ing long after went back for another attempt.)

This was especially true because, not surprisingly if your moniker is T-Pain (pseudonym of my therapist), I would watch everyone else’s health bars except my own. My hubby’s most frequent statement during a balls-to-the-wall battle royale? “Watch your bar, Shuro (my main’s shortened name)!” Everyone else would have full bars, but I’d be on the edge of wiping. I finally had to rearrange my entire screen layout, to ensure that my wipes were less frequent, and to prevent from negatively impacting the team.

Make no mistake, I’m a lapsed player and I have no idea if anyone even does those xp rich runs anymore. I’m sure there are better places now to muck about in my favorite way in that game. I miss the intense chaos and my pulse racing as we danced near the edge of a team wipe and Super Hero Greatness. And it was a full year at least before I risked my own health bar to vastly enrich a targeted player’s health bar. It sounded like suicide, and this was my only my second MMO. Once I finally girled up and chose Absorb Pain as a power, I never looked back and it became a game changing and favorite tool in my empath tool kit.

The point is, during therapy last week, T-Pain was trying to break through one of my core beliefs in a way that would allow me to reconstruct it in a healthier way.  As we talked, she expressed that instead of feeling bad for someone when something bad happens, I actually make myself feel their level of pain, as fully as possible. I’m not 100% convinced she’s right, but it is certainly seeming more and more likely.

Even just last night, I had to remind my immediately broken heart that the death of the grandmother of one of my best friends was not my death to grieve. This reportedly amazing woman that I never met was not my grandmother. I had to remind myself of this because I was shutting down and starting to deeply grieve the loss of a woman completely unconnected to me as if she were my own flesh and blood and lifelong source of love.

[Sidebar: I think the timing of our discovery of his grief is somewhat interesting. I had been having extremely intense feelings of loss and grief of closeness with the couple in question, so powerfully that I messaged them, trying to express that I loved them and hoped for more fun with them in the future.]

Hell, when watching Game of Thrones this season, I was beyond devastated by the death of Lommy, an inconsequential-yet-named character on the show. (Note: If that’s a spoiler, sorry. But when you read here, that may happen. Also, WTF, get caught up so you can listen to my GoT podcast, SpecFicMedia.com Presents – Beyond the Wall: A Game of Thrones Podcast! (Or as I like to call it, SFM.comP-BtW:AGoTP.)

Here’s the crazy lady part: My magnificent nephew has hair (when much younger) that was identical to Lommy’s. When they showed him, I would smile to myself and think of his blond curls and wonder how he’s doing. When he died, I lost my shit. This nephew, who I have always referred to as GK, is in the military and although stateside, my fears for him are not difficult to figure out. I cried and cried and cried and cried. Chooch heard me say, “They killed (GK)…”, and he said, forcefully, “That is not (GK). He is safe and fine.” I repeated that over and over until it sank into the dark corner it needed to, and then felt like a fool.

Well, when T-Pain finally made her point in a way I could process, I started laughing and said, “Holy shit. I’ve been using Absorb Pain instead of Ally Heal.”
T-Pain gave the expected puppy dog head tilt and I explained it to her quickly. She clapped her hands and said, “Yes! Exactly! That’s it!” She then leans forward in her rocking chair and says, serious as a heart attack, “Don’t do that anymore.” I cracked up, and a discussion followed on how to halt an (who knows how long) unhealthy habit.

While I’m proud of myself for catching those — a result of her making me examine every negative reaction to determine the appropriateness of my natural response –, I feel as though I short-changed the friend and the grief his family is experiencing. So in exchange for dodging possibly debilitating grief at a time when there are things in mid-air about to crash to the ground in some areas of our life, I ended up in a shame spiral. I still call it a win, because I caught and adjusted the framing of the loss. And I’ve finally worked through the shame, thanks to My Viking.

So, yeah. I’m going to burn a respec and drop Absorb Pain from my powerset, until T-Pain tells me otherwise.

And I need to see if I ever posted about my prison yard epiphany. It keeps getting proven true.

Happy July, Dear Readers!

~~~~

City of Heroes, Defender Archetype

The Empathy powerset is available as a primary set for Defenders. The following table shows which powers are available and at what level:

Power Level Effect
Empathy HealingAura.png Healing Aura 1 PBAoE, Team Heal
Empathy HealOther.png Heal Other 1 Ally Heal
Empathy AbsorbPain.png Absorb Pain 2 Ally Strong Heal, Self Moderate Damage (Special)
Empathy Resurrect.png Resurrect 6 Ally Resurrect
Empathy MindWall.png Clear Mind 8 Ally Resist Disorientation, Hold, Sleep, Immobilization, Fear, Confusion, +Perception
Empathy Fortitude.png Fortitude 12 Ally +Defense (All), +Damage, +Accuracy
Empathy RecoveryAura.png Recovery Aura 18 PBAoE, Ally +Recovery
Empathy RegenerationAura.png Regeneration Aura 26 PBAoE, Ally +Regeneration
Empathy AdrenalinBoost.png Adrenaline Boost 32 Ranged, Ally +Endurance, +Regeneration, +Recharge, Resist Slow
Categories
Fibromyalgia Vestibular Migraine Whining

My Review of The Avengers **Spoiler: I Haven’t Seen It and I’m Whining About It**

Boring backstory:

Having been dealing with neurological issues for over 2 years now, and with the Fibromyalgia diagnosis recently, I have finally yielded in the struggle against my limitations in the arena of movies and video games. Lookit, I hung in there a lot longer than I should have. I saw Scott Pilgrim vs. The World THREE TIMES in movie theaters, in spite of migraines, dizziness and nausea. And I never even saw the end boss fight with Gideon until a few months ago on a crappy old CRT television. I had always, in the theater and on high def screens, had to cover my eyes.

“Just keep closing your eyes on those scenes,” you say. “Big deal, buy your ticket and quitc’her whining!”. And I do. But, as my eyelids are not light-proof (yet), the flashing battle scenes pulse, muted, through my lids into my noggin and it hurts. Bad. And usually for a long time after.

So I have resigned myself to only putting myself through it in case of extreme emergency, like Harry Potter’s final movie installment. After watching multiple trailers, I decided I was going to have to wait until this one hits the small screen.  But I have been house-bound for the better part of two weeks, and am nesting in our new space. As a result, Chooch saw The Avengers with housemates Phil and Tina on Sunday, after dropping me at a nearby Target.

Guys… I was able to spend their entire viewing time… shopping. This does not sound like a big deal, but bear in mind that I am not driving right now. The combination of my symptoms, medications, side effects and onset of more Fibro issues make it unwise, in my opinion, and I’d rather be hobbled than risk injuring anyone.

Today I got everything I needed for this phase of rebuilding after the sale of our old home, and for preparation for LT’s arrival next month. Yes, I said LT’S ARRIVAL NEXT MONTH! The ticket has been purchased, and we are hoping for a wonderful fun-filled summer with him.

Back in the car after they picked me up from my shopping excursion, I felt a LOT of pain, both migraine and what felt like every joint between my toe nails and my hips. But it felt so good not rushing in an effort to prevent delays for the person driving. And it felt good to feel like I accomplished some things, even if they just moved from one category to another on the to-do list. This has really become a Big Deal for me. I usually hook a ride with people going here or there, and cram all I need to do in a short time.  I invariably forget things and it becomes a hassle, so shopping has become a big stress for me.  Shopping with a 2.5-ish hour timer? Heaven.

Hearing them describe the movie, I was more saddened than at any other point, especially as Tina described how there are some movies you just have to see in the theater for special effects, and I do and always will agree with that sentiment whole-heartedly. I just wish there was also a less-spiffy version for those of us that can’t handle all the special effects and high volume soundtrack at the same time, but would happily spend money seeing it on opening weekend. I have always been willing to ante up for 3D and IMAX when worthwhile? Well, now, I’d pay extra to see a visually muted version. (Insert the “Praise Baby Jesus, it’s not cancer or lupus” mantra here.)

It’s a hard thing to settle for, but I am the mom that had her husband and two sons take her to Iron Man on Mother’s Day, years ago. I miss midnight openings. I miss the kerfuffle.

I kept asking for more details from them about The Avengers, and I became aware that although I was very jealous as a result of my necessary decision, I decided to feel satisfied that I accomplished useful things today. I think this is what “Realizing Your Limitations” feels like.  It’s something I’m supposed to be doing. And, in truth, it’s helping me get through the day, but I sure as hell don’t like it.

Categories
5k Fibromyalgia Too Long For Twitter

Joint Pain Diagnosis and Aftermath

Chooch and I just returned from the rheumatologist after having blood work and x-rays of my feet and hands. While there is something minor going on with my thumb/wrist joint-thingy, she was able to rule out Lupus (again) and rheumatoid arthritis.  The crackly noise my knees have made when I bend them a certain way? Well, in spite of the entertaining response when I creep people out with a demonstration of it, it actually goes by the less hilarious name of osteoarthritis.

The immense joint pain, which when it is settled into my feet I liken to walking on broken glass when on carpet, is due to Fibromyalgia. I know at least a half dozen people that have it, and the amount of pain they live with is more than a little daunting. These are people whose entire lives are changed by their pain, and it doesn’t matter if they are “good” people or “bad” people or educated people or uneducated. They are Altered. Even worse, their loved ones have to deal with all the complications that goes along with living with someone that has chronic pain.

And let’s not forget that this is another scoop on my health problem ice cream sundae. I have a history of heart disease and diabetes on my Dad’s side. I have breast cancer, arthritis and osteoporosis on my Mom’s side. I have been out of work for the last 2.5 years while doctor’s try and then give up on finding something that can be cured for the migraines, dizziness, fatigue, nausea, stutter, tremors and “brain fog. ” I have TMJ. I was diagnosed with Rocky Mountain Spotted Fever. (I say diagnosed in that case because we have no idea how long I’ve actually had it, but it’s believed to be over a year before detection and treatment, when the ideal is within 8 days. I’m still trying to sort out what long-term effects that leaves me open for, although I’m starting to wonder if I should just leave that door closed. Just for now.)

Adding Fibromyalgia to the sundae actually accounts for a lot of symptoms that have emerged in the last six (?) months: joint pain, memory and mental function, tension or migraine headaches (there has been a dramatic increase in both, but I was chalking it up to a medicine change in recent months).

*****************EDIT***************

I just returned from therapy and am adding on to the post I had already started composing. I only mention this because it may have impacted my mood and it may appear abrupt  to you, but many hours have passed since I started this post.

As has happened a few times previously, I had therapy on the same day that something very troubling has happened, the diagnosis whined about above the stars. Well, according to T-Pain (My therapist, and I mean the alias in the kindest way), it’s ok for me to wallow today.  As long as I don’t linger for too long, I can throw myself a Pity Party. After I get bored with that, I will take action as needed to improve things as much as I can.

I have already taken steps there, and am hoping to take my first water aerobics class by next week at the latest. It’s my first little baby step back onto the path to half-marathon training, and even if I don’t make it that far I will, in my own experience prior to this diagnosis, feel greatly improved just by being in motion as often as possible. And if you need any proof that this means a lot to me, bear in mind that means I will be wearing a swimsuit. In public. Me, who’s gained 40 pounds since June of last year.

It just gets more and more awesome the more toppings you put on the sundae, eh? All I know is, if I’d known that my last 5k might be my Last 5k, I would have run like I was on FUCKING FIRE instead of making adjustments to minimize later pains. I would have run like Phoebe on “Friends.”

She also had me do “art therapy” for a bit today, handing me a blank sheet of drawing paper and a box of colored pencils. She drew a vase and told me to fill it with what was inside me. Guys, it was so fun. Even better? She wants me to continue doing it. Daily, using drawing paper, colored pencils or  and nothing but a giant circle as my guide, I’m to fill it in however I feel like filling it in. I think I’m even going to attempt using it as a meditation device.

Even though my Mom was ** an amazing artist, I gave up on myself as one a long time go. My crafts over the years included replicating someone else’s design by:

  • stitching tiny X’s,
  • using any color I wanted (!) on someone else’s cast pottery and ceramics,
  • crocheting, knitting, latch hooking, really any craft involving the knotting of yarn,
  • singing along to the radio,
  • attempting to learn a song on the bass guitar,
  • baking other people’s recipes
  • creating the Stargate quilt with my husband.

My instances of artistry are few and far between as an adult: painting one picture, writing one novel, casting and painting some clay to my own odd amusement are the only things that come to mind after a good 5 minutes of thought and a discussion with my husband. He thinks the quilt should be on this list, since we created the pattern for it. I call shenanigans because our sole intent and execution was to replicate the design as precisely as we could within the time and money constraints we had at the time.

But that’s not what this is about. And by silencing the left side of my brain for a while, the right side stretch and move unfettered, possibly even showing me tangibly “what is going on with me” as I deal with all the challenges in front of me/us. It could be useless, or it could be cheat codes to some cool level previously unaware of, that will help me deal with the stresses and minimize their impact on my health.

*crosses fingers*

I have to admit, I’m getting kind of addicted to my epiphanies and changing of core beliefs and all that jazz.

And if you have ice cream cravings now, like I have ice cream cravings, you have Mur Lafferty to blame for it. She mentioned it earlier today and I’ve been craving it ever since. Thanks, Mur!

_______________
**Someday I will not have to backspace to replace “Mom is” with “Mom was”. Although T-Pain might be shooting for that, I don’t think I’m looking forward to it.

Categories
Mental No Whining Uncategorized Vestibular Migraine

Mental Health Day

Chooch and I spent Friday night through last night purging, packing and cleaning our home in anticipation of going to closing in the next 2 weeks. The non-stop work was driven by our fear that we would cause a delay in closing due to not being finished. We worked tirelessly and through exhaustion and countless complications.

Because we are moving to a much smaller living space, we have to do an extensive, two-step purge. Step one gets the house empty, while step two gets our remaining belongings moved out of storage (where the are now) and into our new home.

We are purging as we go, but as the family archivist/museum, I have thousands of photos (not an exaggeration) to sort through and choose which will be digitized and then do so. There are also family items that I will no longer have room for and that my family does not want. Those items I will photograph before selling/donating. Since I’m bearing the time and financial brunt of this process, it is taking a long time. Progress is halted for now as we have to prep for the move.

I cannot express how hard this has been, as it is the first true purge since my divorce. Even so, I am finding boxes that I packed over 20 years ago that need their fates determined. And of course, nearly every box has a ghost or two inside, either of my Mom, grandmother, my kids or my ex-husband. Finding the hand-made calendar that documented the last month of my Mom’s life was particularly hard.

We arrived on Friday night and intended to stay until the house was done. We were approximately 8 – 10 hours away from being done with clearing out and cleaning for the buyers when we finally received a tentative closing date. Instead of the beginning of March, as we expected, it looks as if we may not go to settlement until March 31st.

That revelation sapped our momentum, as it was already 7 pm and we were going to have to work through the night and then sleep a few hours and return to NextHome in the morning. We instead took our third cargo van full of donations and final trip to storage before returning  to our future home and beloved house mates.

After some brief but intensely awesome time with Tiny Expert and Feral Dancer (our housemates’ daughters), I went for my weekly therapy session. It was a great session, and just in time. She continues to support me giving back as good as I get, meaning if I am treated poorly I do not bend over backwards in hopes of getting better treatment. I put a period and move my energies to where they will matter and be appreciated.

If I am treated lovingly, I reciprocate. Now, I continue to do acts of kindness, but have learned that some will never appreciate or reciprocate. And I am getting to where I am fine with that. I know that if that were the sole requirement for my acts, that I would have a precious few to do those for. I allow myself to feel good in doing the act, rather than in holding my breath for any type of acknowledgement from the recipient.

I find that I still have a long way to go with accepting the now long-term limitations that I have. I now acknowledge that I cannot just jump in my car and go run errands, or make plans that involve me driving, or to even be the sole adult when caring for the young and extremely intelligent and active girls I live with for extended periods of time. As a result, it doesn’t ever feel like I contribute enough to those around me, especially my husband. I feel intense guilt when I am unable to do the things that I must do, let alone the things I want to do.

At the end of my session, my therapist always asks how I’m going to be kind to myself / what am I going to do for me every day? I don’t know why I never have an answer ready, and the question always takes me by surprise. I guess that’s proof I still need to go, huh?

All I can do is to continue to work around my limitations, put one foot in front of the other and never stop trying to be a better person. And only I get to define what that means.

*beep*bop*boop*boop*beeeeeyyyyouuuup*

Categories
Chooch Health Our Kids Too Long For Twitter

Mixed Bag of a Day

Day of mixed blessings – House sale has inched forward a bit; I’ve likely had RMSF for over a year; see a rheumatologist; I’m “interesting”.
~posted on Twitter

I just finished a four week course of treatment for Rocky Mountain Spotted Fever (RMSF). Have I mentioned that? My future housemate and eternal soul sista Jen told me if I were a dog, she would run a tick panel on me. Since I’m not a dog, I asked my doctor to run it and she obliged. Because I have found 2 ticks within the last 2 1/2 years, she went ahead and started me on a four week course of doxycyclene. The test confirmed that I have RMSF and I went back today for a follow-up, since I have had no relief from the joint pain that started in the past few months.

The doctor said that my titer test indicated that I most likely had acquired RMSF over a year ago. She has referred me to a rheumatologist because she believes the extensive joint pain is due to something else going on in my body. I’m more than a little bummed that the joint pain apparently isn’t going to go away anytime soon.

It was during our conversation that she had to fetch my file from her desk. She said it was there so she could discuss it during a meeting with the other doctors in her practice. She thought they would find it interesting. Great, another doctor finds me interesting…

We also found out that our house sale is moving forward and we will allegedly have a date set for settlement soon. We are so excited about this that I very nearly pooped my pants upon receiving the news. Okay, not really. But I did get dizzy and had to wait for it to pass before I could get back into motion.

And after seeing Mur Lafferty tweet “bit.ly/xZDqBY I weep for the future. Who is Paul McCartney?”, I proudly shared the post my 15 year old son made on his Facebook page while watching the Grammy’s last night: “the day Paul McCartney dies will be the saddest day of my life.” I love that my son continues to grow as a music geek, just like me. Our other sons are tremendous music fans as well, and all three have pursued musical interests. Both exes (mine and hubby’s) are also heavily into music and I think the shared obsession has impacted them. And I do, with all my heart, hope that the worst thing that ever happens to LT is that a favorite singer passes away.

Jared Axelrod said I’m amazing (buffs nails on shirt), and then I watched Chooch play hopscotch with our housemates’ 2 year old daughter, nicknamed Feral Dancer. At the end of this day, how can I do anything but smile?

Categories
Hauntings Mental No Whining

WTF is up with me?

Sorry for the lack of posts here. I’m having an internal crisis of late, and am torn in different directions. I’ve been starting posts and leaving them unfinished. I’ve been writing titles that interest me, never to go back and write the post. I’ve been outright deleting posts after I start them, due to their lameness or lack of interest to even me, the writer. I respect your time too much, Dear Reader, to post anything more than mildly boring, rather than an outright snoozer.

I’ve been wondering to myself about the recent months of perplexed thoughts and actions, and have come to no conclusions. I turned 42 last year, and know that if I’m to find the answers to the great questions, I’ll have to find them myself. This has grown even more necessary recently, and I feel that I’m having to discover myself all over again. This is a surprise as I’ve already done that a few times in the last decade:

  • When my ex-husband became my ex;
  • When I finally met my soul mate and resigned myself to an ever-expanding blissful existence at his side;
  • When my Mom died;
  • When our home no longer had my children living in it.

I had thought I had all points mastered, in spite of occasional but intense bursts of sadness from the last two. But it’s possible I’m still in the midst of the identity crisis of not being a “Daily Mom.” Yes, my kids live, laugh, breathe and have experiences every day, but my role is no longer daily. I’m still haunted in our over-sized home by the silence that used to include game sounds, arguing about homework, and footsteps or music pounding from above. That is something that we have made progress on, as our next home has a combination of characters each more magnificent than the last.

Lately, I’m coming to think that it’s hormonal changes, triggered either by my weight loss and subsequent regain, or perimenopause ~ the beginnings of menopause. *tick*tock* I don’t fear that change any more than I’ve been fearful of any of life’s other mileposts. I just have to find a way to organize around it an move forward.

I have more love in my life than ever before, and am accepted for who I am by more people than ever before. And yet, I’m finding that some of my old stumbling blocks still cause me to stumble, and the old insecurities still leave a nasty mark when they come out swinging. When folks have installed our panic button, they can tap it easily and often if they so choose.

Many of these things were so private that only my husband knows about them since I keep nothing from him, no matter how gruesome. Although I’d love to share more here, I’m afraid that while I am wholly honest , I can only be so revealing. We don’t know each other that well, after all, so can you blame me?

I’m trying to rapidly sort myself out, especially as I’m letting those around me down. At least, I feel I am, but I’m told that those that really love me are never as hard on me as I am on myself. That being said there are many strange currents in my life right now, and with fewer than a dozen exceptions, I find I don’t know where it is safe to expose my heart put my trust any longer.

With all the changes occurring in my life right now, it would have been awesome to have had stability in some corner of my life. Well, I do have it and I know I’m blessed. It’s one corner of my life, but it’s a big one. There is no passive aggression, there is no negativity directed at me, there is only love and support shared from person to person. If I am to be judged harshly for finding joy and appreciating it, so be it. Just because things are hard doesn’t mean you can’t find laughter along the way. In fact, I am very sorry for you if you cannot find it when you need it most.

The focus for me now is therapy. To figure out all that is causing me to continue self-destructive behavior. To fight some lifelong demons to the ground and disarm them once and for all. To live and laugh without occasionally stop to rub my head from the weight of all the guilt and stress I feel over things I have no control over. To try and make failing relationships work with those I love and miss.

So, it’s late. And I don’t know what I’m trying to say. But, I will say goodnight now and hope that my next post makes more sense.

Oh, and see Paul, if you haven’t already. It’s freaking brilliant. Simon Pegg, Sigourney Weaver, Sci-Fi conventions, ’nuff said.