Tag Archives: dealing with chronic illness

It all matters. Our life right now. And Richard’s smile on Thorin.

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(Sorry, this post isn’t the most upbeat I have ever shared, but it’s honest. And there’s some hope sprinkled in, because I am essentially an optimist. ūüėČ )

We are about to go into the season of giving. I have already started seeing the charities popping up on the caller ID. I don’t answer the phone because I know I will have to decline.

My sister paid our mortgage for last month. She is an angel, but I have known that forever. ¬†We probably won’t be able to pay this month’s installment until next month.

Ever heard of robbing Peter to pay Paul? Yeah, it’s like that. Who absolutely HAS to be paid, and who will just have to wait their turn.¬† I’ve been picking up more work with the newspaper (thank you, Tracy)¬†and also sold more of my jewelry and collectibles, and that’s brought in a few hundred dollars, but it all seems like just a drop in the bucket.

On one hand, I am so pleased to finally see progress being made with this arm and wrist of mine. I got an¬†injection in my wrist¬†yesterday and go back in two weeks. Dr. Chavan is happy to see improvement, but neither of us believes I am where I need to be yet.¬† I WILL get there, even if it takes being¬†sent to the “wrist man” for surgery.¬† I’ve been fighting with this since May, close to six months, and I am finally seeing a light at the end of the tunnel. For that, I am deeply grateful.

On the other hand, the co-pays are eating us alive. And I feel guilty about it. Guilty that my husband is falling asleep at his desk at work because he can’t sleep at night. I hate seeing him looking so tired. Normally a stoic kind of guy, Benny actually¬†admitting how bushed he is indicates to me he really is¬†desperately in need of a break, and¬†in more ways than one.

And I am desperately tired myself; the Chronic Fatigue is hammering me, on top of the FMS, all exacerbated by the tendon and ligament damage on my left side.¬† It’s one day, one hour, sometimes one minute at a time. I do pretty well putting on a game face for local friends and acquaintances, but underneath it all . . . sometimes I want to curl up with my blue fleece throw and have a good old cry.

 

So I really needed this quote I found on Pinterest today, a¬†reminder that the small and seemingly insignificant things I can actually¬†do, that any of us can do,¬†make a difference. They count; they matter. I may not be able to donate to worthy causes or participate in some events because of my lack of funds and/or my physical limitations, but I can still find enjoyment and purpose and do good for others in my own way. I don’t know, maybe some of you need to be reminded, too . . .

 

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And seeing all the beauty and humor and sweet humanity in this face doesn’t hurt either.

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Guyday Friday: Ladywriter gets some TLC from the Dark Knight

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“It’s a hard day, Sir Guy. A high pain day.¬†Even my hair hurts.”

He tilted his dark head, brow furrowing. “I am sorry to hear that, my lady.” His kohl-rimmed eyes softened as his mouth curled into an affectionate smirk. “Such shiny, lovely hair it is, too.”

LW grunted and tossed a pillow in the dark knight’s direction. “NOW you sound like Mr. Ladywriter, you tease.”

Sir Guy adroitly caught the pillow with one hand and swept her a gallant bow. Flicking back his raven mane, he flashed her one of those dazzling grins.

“We are both here to serve you, my dear LW . . . now may I get you a cold drink and a compress¬† . . . perhaps a gentle foot and hand massage?” He purred.

*Gulp*

Well, who am I to tell Sir Guy “no”?!?

Happy Guyday Friday

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Thorin and I remember; or, the case of the curious Christmas

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A screencap I snaffled from Fernanda Matias on FB. My edit. Thorin about to enter Erebor and be flooded with memories . . .

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So do I, Thorin. Remember, that is. I never lived in a splendid hall inside a mountain as a majestic prince of the realm, but I do remember life as it used to be. As I used to be, before so¬†much loss–family members, pets,¬†good health, a regular paycheck, a certain child-like whimsy that Benny really enjoyed. It sometimes eludes me now.¬†Is it inevitable that we lose some of that as we become older and suffer those slings and arrows of outrageous fortune of which Shakespeare wrote?

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What were you like, Thorin, in those earlier, more carefree days, before the sickness came, and the dragon, and so much death and destruction and loss in your life, I wonder? Even with the responsibilities of a dwarf prince on your shoulders, did you smile that glorious smile more often, and laugh heartily? Did you dance and sing? Did you ever flirt with some pretty young dwarf and fall in love at least a little? I like to think you did. I want to think you had those memories, even as painful as they might have been at times, to hold tight to.

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I remember what a true holiday elf I once was, creating my own Christmas cards or, at the least, embellishing the envelopes with original drawings; making goodies and taking them to friends, often wearing my “elf shoes” (red suede Reeboks with glittery green laces and golden jingle bells) and Santa cap (assuming it wasn’t 80 degrees–ah, December in Alabama!)

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I remember taking my mom to holiday bazaars and Christmas parades in Greenville and Georgiana for as long as she was able to go, and driving around with my sweet mother-in-law to see the Christmas lights after dark. Sneaking into the old farmhouse to deposit treats in the stockings I bought for my folks that hung over the living room fireplace . . . good memories.

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It has been a most curious holiday season for us this year. No presents for one another. No Christmas tree or decorations, save for the Santa sleigh I had hanging on the front door. Scarlett Kitty is still too young and rambunctious to attempt a tree, assuming I had felt like putting up and decorating one. Most days I just didn’t. ¬†I have looked at my friends’ posts on FB and felt more than a twinge of envy, even as I took pleasure in the beautiful faces of their kids and grandkids and nieces and nephews as they posed in their new Christmas PJs or showed off that new toy or game they’d been pining for. The whole family posing for photos . . .

The last family Christmas together before my father was felled by a major stroke.

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My brother-in-law had a stroke this year, not, thank heavens, a major one. Serious enough, however, to cause a lot of mental confusion at times and great worry over the state of his health, which led to one ER and doctor visit after another. He kept awakening in the wee hours complaining of various aches and pains, anxious and fretful.

For my sis, it brought back painful memories of what we endured with our parents.It’s taken a terrible toll on my sister, although she wouldn’t complain to you. My BIL recently had a number of tests done and they have ruled out a reoccurrence of his cancer and any bacterial infections. Tomorrow–or should I say, later today–they will find out the results of the other tests. I so wish I could be with my sister for moral support, to give her a big, long hug.¬† That’s her in the middle, with the sweet smile. An angel, that one.

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No family Christmas together for us this year, so no family group photos. But my sweet niece–the cute blonde in the middle of the top photo, which was their Christmas card photo–posted these pix on FB.

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BeFunky_thegirls.png¬†I can’t believe how those girls of hers are growing up. I send them virtual hugs and hope for¬†next Christmas.

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If our homes are where¬†our hearts are, has your home always been back in Erebor, Thorin? Is my home in the past irretrievable, because there is no key that can open that door and return it to me? I hold on to my memories of being younger, stronger, thinner, prettier, an earner, a right old “Who” at Christmas who could afford to buy presents for her family members without selling her jewelry to do it, who still had all her family members alive and well, whose brain and body didn’t keep betraying her . . .

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I suppose I want the Christmases of old just as I want the Angie of old. But I also know I can’t go back, I can only try to go forward¬†as the person I am now, for better or for worse.¬† Like you, Thorin, I have my quest before me.¬† I know not what 2014 will bring, but I wish to face it with loyalty to my husband, family and friends, honor and a willing heart. You taught me that.

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Is there something wrong with me? Confessions of a bewildered (and tired) blogger.

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The answer to the question I pose in my title is “yes,” because, like it or not, I am fighting a daily battle with FMS/CFS coupled with osteoarthritis and possibly some other medical issues.¬† I haven’t had any feeling to speak of in two toes on my left foot for a few days now. Who knows why . . .

But what’s been niggling at me this week, more than my numb tootsies,¬†is the fact I don’t feel excited. I mean, about all the new RA stuff. I didn’t feel that visceral punch from looking at the “Woof” and “Meow” pics. I haven’t yet watched the new DoS trailer (I know, I know, heresy for an RA blogger) or the video with RA. I’ve been busy–mentally and physically–and¬†I face¬†a lot over the next few months, work-wise, interest-wise, life-wise.32623_480715122018231_1909987865_n

In spite of my excess adipose tissue, I look pretty much OK. Looks, of course, can be deceiving. I had to take a long nap this afternoon . . . I’ve reached the point where I really do miss those naps if I don’t get them. I’d rather take a nap than look at RA, how sad is that?! But that’s the way things are right now.

I’ve come to a crossroads¬†in my life¬†and I have to make some¬†decisions and they aren’t easy for me to make. I wonder what people will think of me, as if I should care.¬† I feel like a bit of a failure, and yet I know¬†I didn’t ask for the condition that is pushing me into this corner. I can accept things intellectually, but on an emotional plane I am struggling.

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I am sure this current mood will change. At least, I hope it will.  Maybe if the calls I make over the next couple of days help me along on my personal journey . . . fingers crossed.

There are things I do look forward to.¬†Saturday night we¬†have to¬†meet with my friend, the delightful English/Drama teacher and¬†director¬†Naomi to discuss the bar mitzvah we are covering for her son next weekend in Tuscaloosa (this will be a first for us in several ways!) . Hoping to go¬†and see “Gravity” at the theater beforehand this weekend¬†and catch the DoS¬†trailer on the big screen. Big screen RA as the majestic Thorin will¬†surely make a difference.

In the meantime, I have a lot of PRP¬†video editing to do, among other things.¬† I look at the weeks to come. There’s continued rehearsals for “Dying for a Drink,” our first Arts Council production to attend in just over a week, a highly-anticipated¬†weekend away in Tuscaloosa and a new cultural experience next weekend, humane society events to publicize, possibly more pix to take¬†for rescues, the opening of the town’s¬†art gallery later this month. My plate is full.

I just hope and pray¬†I have what it takes¬†to keep up with it all and enjoy it, because I don’t want to be the person outside looking in anymore, feeling disconnected from my own community.

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I just have to keep reminding myself of this.