March 15, 2012

Thursday. 9:47 pm. Freaking out.

I have a neuro consult in AM and am worried he’s going to tell me nothing is wrong. I guess we’ll know soon enough.

 

Symptoms

  • Fibro dx – 2007, positive ANA
  • Low fever/chills, intermittent – July ’11
  • Leg went out from under me  – July ’11
  • Lymph nodes left side, spleen? 06/11. Blood-work said all w/in normal.
  • ESR persistently in 40s
  • Head CT – clean, 9/11
  • Brain MRI – clean, 10/11
  • Allergy testing – no food allergies, 10/11
  • Strep test – negative, 10/11
  • Retrobulbar optic neuritis. Glaucoma-suspect.
  • Numbness/pins & needles – Left arm/hand, Right foot/leg
  • Brain fog – worsening – lose words
  • Extreme fatigue, not better with naps
  • Fibro tender spots more tender
  • Muscle weakness, especially arms/shoulder blades/upper legs
  • Muscle burning, like between bone & muscle
  • Vertigo – 6-months-ish, worsening
  • Uterine fibroids – 06/11
  • pain on top of head
  • headaches, not relieved by nsaids or opioids
  • Weakness in hands, occasional tremor, dropping things
  • Nausea – from vertigo?
  • Nightmares, insomnia, fatigue
  • Thermal instability – too hot, chills
  • Pain worse in heat, even during/after hot shower
  • Crackling/electric shock-like pain down neck/back/legs since 9/11, worse when chin to chest
  • Eye pain, light sensitivity (since 09/11, peaked, retrobulbar optic neuritis) w/pigment desaturation
  • Blurred vision, ringing ears
  • Persistent eyelid twitching, sometimes other parts of face/legs
  • Abdominal pain (left side & gut)
  • Mood swings
  • Always in pain
  • Skin – itching, breakouts, sores? Itchy tattoos.
  • Bruise easily, frequently
  • Sometimes breathing hard, like from cardio but w/o workout
  • Pain on deep inhalation

February 20, 2012

1:42 pm. I’ve neglected this a bit. My health hasn’t been the greatest. I have retrobulbar optic neuritis, swelling of the nerve between eye & brain. Vision blurs, light hurts, red doesn’t look red anymore. And having it increases my odds of developing MS. Just had a spinal C/T MRI on Friday. Almost 2 hours strapped in a tube, ending with searing pain, like my muscles were being ripped from bone. I get a brain MRI this Friday.

I turned 33. The day itself was nice enough. Then I got word that my cousin Ignatius – Iggy – had hung himself. Sad.

Mia turned 3. She spent the day, like most, cheerful and excited. Thursday night we had cake & presents when John came home. Purple kitty boots, pink heart rain boots, “floppers,” and art supplies. Daddy did awesome.

Saturday night John took me out to dinner. We tried Vallata, Pump House, called Turtle Club, drove by Gambardella’s, wound up at Bobby’s. After, we picked up the kids and drove out looking for the aurora and stars. Awesome night.

Yesterday, John took the older 2 to see Mr Justin and Miss Hannah. Peanut and I stayed home since he was vomiting. I finished The Great and Secret Show, started Mrs Dalloway.

Today I started writing, again. Feels totally awesome to have words flowing, to have a character coming together out of nothing. Now, I’m going to get ready for a day of shopping & hanging out with sweetie.

January 13, 2012

12:28 am. Last night River refused to sleep. He cried, fought me, fought sleep, kept waking, etc. Once I heard Mia laughing in her dream – that is always a most beautiful thing to behold. JR slept soundly. Buffle got busted for eating all Femmer’s food on the sly. No amount of coffee got me going today but we at least made it outside for a little while. We managed about an hour wandering the backyard in -10* before the wind picked up and ruined our fun.

We all stood under the pine tree, shaking low-hanging branches. Wueste beat me at WWF again, some shit-talking started. Sasha told me she’s moving back up here, about a 3-year timeline. Amanda got back from Chicago – she’ll be getting a stem cell transplant. I wonder how I can help her raise $ for it. Jessie said she’ll be graduating in May at UAF. I have to try to call Darrell tomorrow. Anjyla wants to try Hyland’s so I’ll have to try to remember to pick some up for her. Michael needs his package, maybe a coat.

I miss Mama, her friendship, her advice, her laughter, her love. I wish my kids could know her.

John is going to Vegas at the end of the month, and his mom is going to meet him there if she’s feeling well enough. I wonder sometimes if Sasha will be moving up just as we’re moving down. We’ll see.

The kids & I were over the moon about John coming home tonight. Things feel complete now, hearing them all sound asleep. I’m surrounded by the sounds of those that love me most.

January 11, 2012

8:00 pm. Today has been fun. JR & River built Lego ships, and played Wii Lego Star Wars III (Stars Blocks) together. It was warm outside (10*) but we didn’t manage to make it out. JR wanted to build ships instead, since the Legos had been confiscated yesterday. Mia and I baked blueberry muffins together. She was so proud, standing on a step-stool in front of the oven. She said we have to save one for Daddy. John told me this AM that he’s getting a raise. As hard as he works for them, I’m glad for it. I can’t wait to see him tomorrow. Sure the house is full with our 3 kids, 2 dogs (we’ve got Buffle and we’re watching Sparky for dad), Femmer, and Spaz the Turtle. Still, the house feels big and empty when John isn’t home w/us.

River hasn’t wanted to sleep today. He’s blissfully asleep now, though I’m sure he’ll be up forever later. Oh well.

I’ve started reading “Pride & Prejudice.” Reading and writing seem more important right now than they usually do, or perhaps I’m finally breaking through some Fibro fog. I’m going to aim for snow play tomorrow again, grab some daylight while we can, especially before it gets stupid cold again. Supposed to be down to -40* by tomorrow night. Brr.

January 11, 2012

It’s 1:40 am. You’re all asleep. Bedtime has been less of a fight the last few days, since I moved all our beds into the playroom downstairs. I think it feels more like we really “live” in our house now that the beds are down here. I damn near got myself stuck in the staircase under the king mattress. John hasn’t seen it yet. He’s been at work forever with the JD Edwards changeover. Two tomorrows, he’ll be home.

It’s been a good day, most of them are. I only had one meltdown with JR today, over Legos, presumably. I always worry that I’m too hard on him. I hope the love comes through though. Mis “read” Mia & the Too Big Tutu under a blanket giggling to herself. River ran around with a playsilk over his head, giving hugs & waving his arms. JR made awesome Lego ships and watched “Rescue Robots” (Bionicle 3) on the iPad. I talked to Chrissy, Stasia came by, my pain levels were so-so. I finished reading “Bones to Ashes” by Kathy Reichs.

I’m exhausted, but forcing myself to write. I want it written, what our days were like. I worry that you’ll all be grown before I blink. I feel like I need to capture pieces of your childhood, if only for myself. I love each of you in such heartbreaking ways. You’re all damn cute asleep, too. I want to take you out in the snow tomorrow if it’s warm enough.

so many years

I prefer left-wing news
I like dark chocolate at night
I wear red lipstick and dresses
and sometimes I’ll pick a fight
I curl my hair and wear high heels
I go to sleep with a light on
I can cook seven course meals
I miss mama like crazy ’cause she’s gone
I can grow plants from seeds
I’m terribly frightened of stairs
I’m afraid that I’m sick
I’m more afraid that no one cares
I keep my hands busy with yarn
and my favorite season is fall
my heart races like a schoolgirl’s
every single time that you call
I have a picket fence and garage
I have three kids, a dog, and cat
I’m a strong loving mother
but I’m so much more than that
I’m creative and witty
I’m sarcastic and smart
I can be really mean
but I have a huge heart
I want to travel and write
I want to paint and to dance
I want to go to the beach
and be surprised by romance
I dreamed I burned dinner
and there was a scenic view
it’s been so many years
and I’m still dreaming of you.
so if, out on the street,
you’d just met me today,
would you choose me again?
or would you walk the other way?

Could use a hug & a prayer

I’ve had a crappy few months and I hardly ever come out and ask for thoughts/prayers like this, but I’m asking. I could use a hug and a prayer.

It’s been one family crisis after another. My father fell. My older sister called me, told me to come see him, that he was in critical condition & most likely going to die. John took the week off work, we drove 8 hours down to see him, only to get there & be told it really was just a broken ankle. That was emotionally taxing enough, given that I have such a rough history with my dad, but we’re in a great place now. I wound up getting in the last fight I’m willing to have with my older sister & her twin daughters (who are just 6 yrs younger than I am, and were raised to be my little sisters). That & my dad’s ankle kept me full up on drama for weeks.

While we were in Anchorage seeing about my dad, my husband’s boss lost his job, throwing their whole hierarchy into chaos & competition to replace him. John was stressed for weeks. The company ended up splitting the dept & essentially eliminating John’s boss’s job. The new structure is awful, and John is always stressed, always working, even when he’s home with us. He works out of town 4 days/3 nights a week, but now ends up doing work stuff all the time when he’s home. The kids were having a hard time with it, and I was left refereeing all sorts of toddler squabbles as a result of their internalization of our stress.

Besides their typical bumps & bruises, the kids have been sick and/or teething, one after the other, making them irritable & unwilling/unable to sleep. I’ve been everything for them for weeks now, so that meant I wasn’t getting any sleep. I had to have an urgent root canal a few months ago, then it was redone about two months ago, and then it started getting worse because it had been cracked. So last Friday, I had to have it pulled. That’s been a blast.

My father-in-law was in the hospital for something gout-related a month or two ago. Then my mother-in-law was hospitalized for diverticulitis. Then they started trading illnesses.

Two weeks ago my older brother was arrested (nothing serious, just cumbersome). Bail hearings, attorney calls, court dates, scrambling, drama. All a pain in the ass.

Last week I found lumps — one in my left armpit, one in the bottom of my left breast, and a pain under my left ribcage. I dropped 5 pounds in the last week without trying. I have an appointment with my doctor in two weeks, as he felt that it would either resolve itself by then, or whatever was left would need to be investigated. I’m trying very very hard to convince myself that this is nothing.

Last Friday, John had a dental appointment to be checked for a dental night guard. The dental office couldn’t offer him the one he needed (for sleep apnea) but has referred him to an oral surgeon because they found a growth on his tongue. I smoked for 15 years before I got pregnant with JR (now 4). John smoked for 15 or so years too, up until JR was born. We’re both worried that we have something cancerous going on.

A few days ago, mother-in-law had her gallbladder removed. Today, we got a call that my mother-in-law was back in the hospital. Apparently, the surgeon nicked/severed her common bile duct. She was supposed to go into emergent surgery this afternoon, but they had to postpone it until tomorrow morning because there wasn’t an available anesthesiologist. She’s not doing so great right now, and John has been freaking out all day. I’ve been trying to give him space, since I lost my mother 3 years ago and remember that there weren’t words or actions that could get through the panic I felt. No one in his family will give him a straight answer about how serious the situation really is, so he’s taken matters into his own hands. He’s taken the week off work, and just left to get on a plane from Fairbanks, AK to San Antonio, TX. If all goes well, he’ll be coming home Saturday. If not, well, we haven’t wanted to talk about that.

Through all this, I’ve had clients needing work done. (I help design & maintain websites.) They’ve been marvelously patient with me, but I feel very guilty that I haven’t devoted enough time to them. Some days, all I want to do is tweak some code but can’t get to it, what with all the hats I wear. Other days, I just want to play with the yummy yarn I’ve gotten from Three Irish Girls and the backwards loop. I think tomorrow is a yarny day while I wait by the phone for updates about MIL.

So that’s a lot of whining from me, and I could really use a hug & a prayer. Thank you. <3

Randomness

My older sister is a cunt.  Her twins are white trash bitches.  All three of them are ridiculously unhappy.  I’m done with them all.  I’m kind of over being angry at them, as in I’m tired of it but not sure if I’m actually done yet.    I certainly haven’t talked to them in a good long while, and have no desire whatsoever to talk to them again anytime soon.  They keep telling me that I’m not family, so I’m trying to regard them as I would strangers or acquaintances; they have my pity, but whatev.

“Forgiveness is giving up the hope that the past could have been any different.”  I’ve just about gotten there with my dad.  It’s refreshing.

Darrell got arrested again.  Jackass.  He sure seems like he’s trying to do life on the installment plan.  Hopefully this lawyer of his will get him another good deal.

I’ve sucked it up and accepted help.  John has put out a Craigslist ad, and I now have a housekeeper.  She deep cleaned the kitchen a few days ago, then came back today and deep cleaned the bathroom & kids room.  I wasn’t sure how happy I’d be having a stranger in my house, picking up after me and my family, but it’s actually a load off.   The kids get along with her, she’s not overly chatty, she works hard, so I’m comfortable having her in my home.  I’m glad that John is willing to get me a housekeeper.  That man of mine really does take such amazing care of me.

Life is pretty good.

Whew.

My friend K asked me why I felt so disconnected.  I pretty much blurted all this out, so I guess it needed to come out:

Perhaps I just have a general disconnect with people.  I’m really still in shock about my little sister, and ll sorts of fun emotional stuff is going on now that I’m talking to my other sisters (and biological brothers) again.  It’s got me reliving losing mama, and I feel so lonely and angry most of the time.  I actually think a LOT about a quote you posted a week or so ago, how forgiveness is finally accepting that the past could not have been different.  I’m really trying to make that come alive for me.  There’s a lot I’m angry about, and the resentment isn’t doing anyone else any good, but I haven’t grasped it to let it go yet.

I just spent two weeks in TX and Chicago, visiting John’s (normal) family.  His two sisters are older than us, and I felt more comfortable with them than with John’s old high school friends (whom we see every time we’re there).  The old high school friends of his have kids that are older, they still go out partying, some are having marital issues, and I feel like I have nothing in common with them.  But I don’t really ever socialize with anyone else up here, and the couple of friends I do have in Fbx are pretty flaky hippies that seriously can’t get it together for consistent playdates even.  And I look at my family, and all their freakin’ drama, and I get upset that they’ve dragged me back into it again.  It’s crazy; both of my (biological) little brothers were in jail when Melinda died.  They’re losers, but I feel obligated to be there for them since they don’t have anyone else.  Then there’s my older sister Sandee, who used to be close to me, turned into a psycho bitch that did f*d up things to mama and daddy, and I was happy to be rid of her until recently, when she started acting human again.  It has me wondering if I have my sister back or if she’s just luring me in to fuck me over later, and I hate thinking that about her, but I don’t trust her.  My little sister Tasha is content to stay in an abusive relationship, and the other twin Jessie is knocked up again by babydaddy #4.  I’m weirded out talking to my dad as often as I do because of what he did, but my son loves him so I feel obligated to keep him around for JR’s sake.  I feel like the most stable one in my family, and that’s an uncommon feeling.  I just need to get more sunshine, make a couple more friends, get some distance between me and my issues.

So.  Whew.

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