Tuesday, June 26, 2012

UPdate ON the Ladder, er um Latter

Good Morning. Up after little sleep. 


Because my hands can't take it, I must schedule time to squeeze in my research. Things are slowly starting to make sense. 
No quick results will finalize my pain chapter. Seems it's bound to be an encyclopedia set. 
Always wanted a best seller but if its name is Fibromyalgia, I'd like to pass. 
No entries in the last couple of days. Now having to work around the painless points of the day for internet research. For my goals - specifically the research on and support groups for fibromyalgia. 
Okay, time for a shower cause the hands are yelling at me. My head and eyes look at them to say, "Wusss!" But my hands mock my lame lament. Complete with middle fingers.
My bright light today? My wish-she-was-my-Mama sister...is coming to see me. As she will tell you...Ineedahodeyou. Back at her. I've never once in my life, even in times of rift, ever, ever taken her for granted. I love her with every ounce of my being. And I'm a big girl! 
Here's to hoping  you have aching in your heart (the good kind of ache) for that "sister" in your life. We're only a teensy speck in this world and need to appreciate EVERY moment, however miniscule. Nice to know that life has room, if it must, for pain AND for adoration. Like the trees above, side by side...sisters forever. In love, in pain, in joy and in name.

Friday, June 22, 2012

Any Consolation I Can Get!

Whatever the tool, I'm not above silliness to come out the other side okay.
2AM - I haltingly rose for a visit to that room. Lumbered back to bed and laid down, delivering myself a pep talk. "Now just think of something wonderful and maybe I'll have sweet dreams." Thinking of my peaceful spaces...lazily dipping my toes off a dock (oh, I might drown inside Orca), the backyard (shit, the weeds could turn into Seymour-like killers), with my family (no, I'd lose one of my own and never rescue them), you get it - on and on. Like a bad hairball turning into a softball, picking up steam as it rolls downhill.
Well, I'm still up. My husband, getting ready for work and knowing my sleepless situation, asked a question. "Why don't you look at Boo?". In my sister's "speak" I reflect on that "he's rightchaknow" mantra. Seeing Boo brought a big smile to my face. Boooooo Bear! Thank you, honey. Just as soon as I get a chance to nap, I'll conjure up Boo. Ohhh, there's risk there too.
It sucks to be me. Not sweet dreams, just bed bug bites. 
Boo's a honey, don'tchaknow? More smile-making pics on Facebook at www.facebook.com/Boo SPREAD THE LOVE! He's now one of my weapons. My REM friend. Like I said, "whatever the tool."
Update on my physical and mental state: As the day drags on, my pain worsens. I've begun to wonder if it's the pain that actually wakes me up at night. It never leaves me, follows my every move. Typical shitty night but I regret not taking my pain meds yesterday. Bravado and mind over matter are a crock. I finally took something after I napped today. I'm starting to believe that there IS a domino effect going on. The pain makes me anxious, the anxiety is making me sleep deprived, the depravation worsening the pain. 
My next move is to try the gluten-free route to see if it helps. I am convinced Crestor DID make my pain worse. By stopping it att this point, as I told my husband, I think it just went from wishing I could have morphine-like relief - wishing for strong relief but not the death-type last resort kind.

Soooo, here comes an experiment.

  1. Diet: Gluten free, cut back on sugar.
  2. Support Group: Reach out to some groups. As everyone knows, nobody likes a whiner. So my ability to be able to talk freely about this should be a real plus.
  3. Education: learning is a valuable tool and that I think will be an added benefit.
Looking forward to making new friends,
Pained-in-Plainfield Suze
P.S. Fact: Fybromalgia is a migratory pain. Moving from ankles to hands, to neck, etc. This validation explains my inconsistence in locating the source of my pain. You'd think I was born Catholic instead of converting. My guilt causing me to worry. Will anyone believe me? It shouldn't matter but it does. Right now, I'm just happy to believe that my doctor, sister and lover are on my team. 

Thursday, June 21, 2012

Seduction...

Hello Fellow Fibromyalgia Sufferers,

Sleepiness wooed me like a virile lover whose seduction is spot on, shall we say. Wink, wink. The times you can't resist, you just know that you're spineless. Nothing can help but to give in. The added benefit was giving my back a break. You know...when it tries to warn you that it's about reject a cash deposit of vim and vigor for a round of KO'd.
How many mornings do you have to convince yourself to get up? Alas, yes, I failed today. Fortunately I freelance or I would miss tons of work. It's hard to be upbeat about job hunting but it must be done. Starting later today than usual.
Progress on my home improvements, pre-Open House, is not a bill of sale with a deal made. It's more like a collector breathing down my back. I can run but I can't hide.
Nothing like painting a door to show off, something like wearing a sultry dress to a 30th high school class reunion? Not so lucky and "in my dreams". But a door? Doable.
Off to squeeze out a shower, check the jobs drill and slap on a coat. Yep, right after another pep talk to my drooping eyes.

best,
the grateful for the lack of nappy-time nightmare girl

Wednesday, June 20, 2012

Morning! Ah, headache, hello. Thank you, baby, for trying to save me from my nightmares again. Up and at them! (insert Schwarzenegger voice)
Trying to be upbeat.
Insomnia is a Grade A countryfied bitch. Before I give in to seeking the help of my Cyclobenzaprine, I discover an ovary-quaking sweet pea doggie. https://www.facebook.com/Boo Genuine joy. I actually raised my arms with the whoop, whoop. You have to understand that I am NOT a dog person but this little baby? Oh, be mine! I fantasize a tad about having one, what would I name it? Was cracking myself up. I was so happy! Before closing my laptop for nigh, nigh I send a message off to my sister...about the name choices I cooked up. You have to remember that I love art and my boys - not in that order. Hence Berthe for B. Morisot and Frida for, well, Frida. Oh, and my favorite artist, Xenia Hausner. Couldn't "funny" up her name. So she stands proud by herself. Didn't think of a name for my other fav, Maron Resur. Hope this message brings a smile to your face!
Oh, greedy me-ee. (sung to the tune of Lonesome Me) Ha. I would love to have a teacup pomeranian with a teddy bear cut ( you have to see Boo on FB ) Every pic of Boo made me so happy. I'd want a girl, of course. It's time I had an ally in a family of boys. One of the light-colored ones. They really DO look like Snuggles, the teddy bear. oooooh Thought you'd get a kick out of some of the names I came up with. I won't get a puppy, of course, but anything for some grins.
  • sugar
  • frida love (shades of the 60s)
  • berthe sons
  • mini pearl
  • polka dotty
  • georgia o. keefe
  • xenia
  • baby fabs (our last name)
  • lola omg (la, la, la Loe-luh)
  • powder puff
  • snuggle cloud
  • lily
  • Abby Lonie
  • ivana puff (in honor of cancer patients and their medical marijuana) No, I don't smoke the stuff, not that there's anything wrong with that...
  • mmm maddy noodle (after my man's homemade delish soup fixings)
  • sierota lieben (orphan love)
  • sierota wolke (orphan cloud)
  • zart sierota (delicate orphan)
  • Barzo Mädchen (pretty girl) 
Update on my physical and mental state: Last night I took a muscle relaxer which I'm supposed to take to get deep sleep when I'm in pain but I hate the way it makes me feel sluggish. Add a dose of major nightmare and a whole lot of anguish. These devilish night terrors are sooo real. Wondering if anyone else is going through this. So real that I almost upset a side table, screamed, you name it. Wishing l could just dream of golden meadows, rainbow bliss or maybe even my husband in pink tights. Instead it's endless convoluted escape routes, missed trains, lost babies, cruel "friends" and floods of tears.
So this morning I tell myself to soldier on 'til the pookies are gone from my eyes, realizing that it's daytime and I'm safe once again. Silly me. But the reality is that my nightly torture is bursting my happy bubbles. And that would be bearable if my joints weren't killing me. Sooo, time to take meds, check my energy meter and click my head to "on". (if only it were that easy, eh?)
Yep, time to finish some projects while watching some trash TV. Ahh, a tad bit of revenge. Until next time, here's a little something to cheer you up.
https://www.facebook.com/photo.php?fbid=467661708253&set=a.443470443253.240932.80329313253&type=1&theater

wishing you a whoop, whoop,
suze

Tuesday, June 19, 2012

Fibromyalgia?

What the hell?

Even before approximately two years ago, gout betrayed my body and I embarked on a horrid trip. I, like so many others, hike a trail of questions. Looking for answers too long in coming.
Bastard Gout, thank God, was an isolated event. My current and recurring pain is the strangest animal I've known, gout-like and periodically unbearable as it can be. Physical therapy, on advice from my doctor truly helped - NOT. The reason for this to be explained later.

I'm a big sweet, german girl with a happy family. Head of this family, whose badge says "The ONE" but means "love", is our revered center. He's my betrothed. Sort of short and aging be damned, his eyes say it all. "I LOVE YOU!" Mil besos, mil besos, mil besos, even when he's annoyed. My tale of healing depends on his support.

His introduction under my belt, our story begins.

My beloved husband and I stared into each other's terrified eyes at the end of May of last year, having just heard the news. He had a stroke on his left side. God help us.
2011's challenging summer was appropriately punctuated with dead flowers as hospital trips consumed my days. I found myself, the diligent gardener, suddenly brutal in the neglect of my posies. My baby daddy was my focus and still, thank God, IS! We've arrived at an agreeable impasse. Resigned to a fight, t o g e t h e r.

Luckily for us his loyalty and charm saved his job after missing longer than the allowable absence. Each day of our trial - taken one at a time, just like the steps he takes. With almost no stumbles and stubbornly - one by one. Grateful for being able to eat dribble-free and to wipe when duty calls. My words, not his, he perseveres. Still, feeling free to curse like a sailor in silence, I internalized my anger as he perfected his obvious stoic resolve. You see, his preoccupation has never wavered. His concern? Not for himself but for his family, his wifey, his.

My return to the blog? Quite simply put, I need - not want - to work out the stress. Put pen to paper, dump the depression and hammer out the hassle. Questions need answers.

Yes, this is about me. My symptoms, ever-present, join me and my greatest advocate, hobbling into the doctor's office. I jokingly said, "race ya." My hobble from the pain and his, well, getting better all the time. Asked how his leg is doing, he'll tell you, "It keeps following me!" His resilience is nothing short of amazing. His support too verifies the fact that we're in this by hook or crook as a team.

My man's progress was slow and steady and admittedly requires me to bear this chronic crap in order in order to care for his needs. Pissed? Yep. Not that he needed me but that I couldn't be there more easily for him. ALL these years and ALL those wonderful meals and memories he'd selflessly given, I wanted to be there for him. Be there for him because he, a typical man, will not admit to needing help. Now for once, I could repay just a tiny bit of my gratitude.
Ours has been a long journey already and finally we decide to acquiesce to an inevitable fact. The house too big, the yard's care too taxing and our lives shorter by the day...big man on campus finally agreed. We need to move into a one-story home. Fun and family is now higher on our priority list. Pain be damned, I am determined to pack us up and PRONTO, Tonto! But that isn't easy.
The pain nor the accompanying symptoms are nothing if not dependably there. It varies in intensity but remains my shadow.
Symptoms consistent, diagnosis unsatisfactory until now, I've survived the last year with the occasional prescription of vicodin. That is one of the reasons I must, we must, find a solution to my pain. Hyper exaggerated by a million times (okay, that's an exaggeration) the pain plugs away. I resort to scheduling progress on packing. Afraid to be denied my pain relief, I take ONE pill to get at least a little work done. With my pill and three days recovery period, I pretend to be the "little train that could." Slow but methodical in progress. Setbacks seem to be less of an enemy, allowing me an occasional break in the schedule. My gears are reduced to "go" and "collapse". Just those two.
Our modern family is typical. One son lives too far away to be a practical solution to the daily rigors of "staging" and packing up the house. The other sonny boy lives nearby and tries to contribute during his busy life and is one of our 3 main helpers. Son #1, Son #2 and Son #3. The latter being our sweetheart nephew. His reputation is and always will be that of "tall, up for helping anyone and for being the totally lovable". Everybody loves him. A family friend also gives of his brain and braun. A great team, all in all.

Back to this blog's title...I listed a litany of ills on a used envelope because I was afraid I'd forget something at the doctor's office. My visit began with, "I wish I had done a PowerPoint presentation so no one goes to sleep midway!" Interjected and included on my list is a suggestion of my honey's..."why don't you just say what DOESN'T hurt? It'd be faster." (in case you're curious, it's my elbows that don't hurt) Ha.
Chuckles aside, all four of my ears (yep, deaf girl here) heard my doctor say something that just may be music to my ears. A probable diagnosis. Testing to come, I'm already somewhat relieved. NOT because I long for an autoimmune disease but because now something may actually help. And by helping me, it in turn helps my lover.
Meds adjusted...depression, pain, stress and anxiety to be addressed with Cymbalta. No more Paroxetine, a Paxil generic and Crestor also cast aside due to its reputation for delivering pain to the joints. Whaaaaaat? Gladly gone from my pill box by gully, pun intended! Temporarily anyway to see if it delivers results by omission.
So far my pain IS a little better. Apparently stress is an understated trigger for pain caused by Fibromyalgia. By lacking deep restorative sleep, the body can not and will not repair itself properly. Also, exercise doesn't help. Pain on pain not helping because insomnia deters restorative healing. When  my doctor say that it's NOT all in my head, I heard music, I swear. Dramatically swelling music. A narrative of hope.
Internet research explains almost verbatim my symptoms. Really? My fatigue, the palpitations, my heart stuck to the back of my chest, the depression resulting from feeling excluded from activities, the almost unbearable pain and the anger it can jump start. Even the lack of swelling makes sense, it's not that kind of illness. Anxiety, earaches, gummy eyes, mouth sores and forgetfulness, just a few bullet points on the list. The bullet points better described as a map or family tree if you will, complete with legend.

  • Red: the pain
  • Green: the weapons
  • Blue: the symptoms
  • Yellow: the setbacks... you get the idea.

So begins my occasional entry that paints a picture of my incessant worry. That problem used to be my husband's alone - exclusively. But now worry sits on my shoulders too. With help, good days will begin to trounce the bad. IF this is the burden I have to bear, I'm lucky. Lucky in love and fortunate to live in a time when support is at hand. I'm just beginning to read blogs by others among us who fight like the bitches we need to be. Now I can begin to ignore the naysayers and count on strength to be my ally. Backstory fini!

So begins my a tale of recovery, I hope. It will be jumbled at times, sort of like the synapsis of my "on-strike" brain. Funny how the word "doohickey" is my preferred noun these days. Looking forward to your advice and comments.

As always...
best,
suze

Sunday, February 20, 2011

Web beW House esuoH


HOME dot com by sjacobsfabian ©


visitors hard won
pristine marvel to see
tangled and yet strong
graphic fragility

Monday, May 03, 2010

Idyll(ic)

Back to work soon and it'll be time to miss my idyll time, again. Less time to spend with nature's exclusive works of art...sigh... Less time to be careful what I wish for, eh? Ha!
She (Mother Nature) helped me minimize flower costs. That was accomplished mostly with overwintered Creeping Jenny - right in its intended destination. I just added a few flowers and voila! Instant gratification. The 3 types of coleus are Redbean (at center), Lemon Twist and Kingswood Torch and they provide a textural backdrop. Gerber daisies are planted for their summer-long contribution and finally, this trough features tiny, "Firecracker" Zinnia. They'll grow more as they mature. I'm a sucker for these old fashioned posies.
Planted in this statuary, dubbed "Our Lady", is sweet alyssum and corkscrew rush. We called it the "Spike Lee do" but I think maybe "Whoopie" would be better. I hope the trellis realizes its climbing rosebush by summer's end.
The last pic is of overwintered baby's breath (no coddling required) with zinnia again. Sweet scale placed in front of our patio door, its blossoms just about ready to popPp. This is one of 3, the center being a chartreuse hosta, for contrast.
Happy gardening, my friends.