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My Gift

My Gift

Yesterday was the Bean’s birthday.  She woke up early and there was a gift from her momma on the kitchen counter waiting for her.  Wow! She said when she saw it.  A present!!!  I told her, yes, momma left it there for you to see first thing in the morning!  Well, she was excited as she LOVES presents.  What kid doesn’t?  Last year we had 2 birthdays for her.  One little family one on her day and then the big one on the weekend.  Well, after that it took us at least 2 months of telling her every day that it wasn’t her birthday, every day.  It didn’t help that she’s a Sproutlet and that dang Happy Birthday show with Chika is on each day.  Confused the heck out of her and was more proof that everyday was her birthday and Grampa and I were full of it.  Soo, this year we decided to tell her happy birthday, she’d get a gift from mom and we’d save all the festivities until the weekend party.

She has decided that she doesn’t want to be 5.  She doesn’t want to get any older actually.  She wants to be 3 so she’s closer to her sister’s age, but still older.  She happily ripped open her gift, and loved it.  Blueberry Muffin, a doll.  Now her Strawberry Shortcake has a friend! She loves it.  I love her. She is such an amazing addition to our family, and to our lives.  Each day I thank God that she is here.  My heart overflows with love for her.  She isn’t just special needs I often say, she just special.  Ok, here’s the thing.  We were getting her ready for bed and I was blabbering away at the Big C about something inconsequential and she pulls on my sleeve and says, “Yamma, You are my gift.”  Just like that, out of the blue and straight out of her precious 5 year old heart.  I almost started crying.  She’s amazing.

Thank You Lord for blessing me, again and again.

Bean's first day here! 5 years ago...
My little Halloween cuties!

My little Halloween cuties!

Usually the weather on Halloween here is unbearably cold.  The kind of cold where body parts start to freeze and when you get home it hurts to thaw out. Not this year! I actually didn’t go out with the kids anyway, I was flaring sick. But they had tons of fun and got lots of treats. Which btw I think their momma nabbed it all because I can’t find any anywhere in the house.  I could use some chocolate right about now…

Here’s a few shots of the kids looking very buggy and witchy.  They are adorable if I do say so myself!

Dark Day

Dark Day

I woke up this morning just feeling the depression before I even had my eyes open all the way. I’ve been battling it for weeks now, but today is/was different. I felt like I’d already lost the battle and I hadn’t even gotten out of bed. I know this is a chemical thing, and I also know it is very selfish of me to entertain it, I just feel powerless today. My pain is very high. I feel poison running through my veins. It’s the only way to describe this feeling; I can feel it running through my veins. I’m itchy. I’m restless. I’m a mess.

I have so many things to be thankful for, and to be grateful for. My family. Are. Amazing. My partner in this life is a saint to be putting up with even a fraction of all the shit I seem to be throwing around lately. He is my heart, my reason. The Bean is amazing as always. I feel the most guilt over her. I feel like I am not giving her what she needs. I’m always sick. I imagine us going to the library, to the park, heck, even just to the store. But ‘Gramma is sick’ is what she hears. Big C corrects me and shows me just how happy she is. My mother is always there for me and Bean. She takes her to the park the library, the mall. I am forever grateful.

I thought if I sat down and tried to put into words what is making me itch, causing me pain that i would feel better. I think the only way I’m going to feel better is to consciously choose to be happy. That sounds so simple. And impossible today. Is this depression? Or is it guilt. I feel so guilty for being sick all the time.

Nothin goin on but the rent

Nothin goin on but the rent

I don’t remember what that song was, just that one line. Actually it’s, ain’t nothing going on but the rent. Yup. July is going to be our tightest month. Oh, I hate tight. Tight makes stress levels higher than they would be otherwise. Money truly is the root of all evil, or at least the middle management of crankiness and arguments.

I am still waiting for my insurance to say yeah or nay to approving payment on IVIG treatment. Right now I’m treatmentless. Ha. Still on the prednisone, ugh. Still prednisone fat. It’s not even the belly that bothers me the most, although I do look slightly (ahem) preggers, but the under the chin thwaddle. Is that what it’s called? I’ve got buffalo hump, preg belly, and my chest size is astronimical (never thought I’d see that in this lifetime without surgery) but the one thing that I really can not stand

Even dense facial hair does not hide the 'thwaddle'

EVEN DENSE FACIAL HAIR CANNOT HIDE THE THWADDLE

is that dang fat that hangs out under my chin, extra neck. uck. I got off track there…

I had to stop taking my plaquenil, (hydroxychloroquine) because my eyes are really going. I kept telling my old rheumy that my vision was quickly failing me and he told me it was my age. He said I didn’t need eye exams, oh man. No matter how much you like your doc, always go with your gut! I didn’t. I just nodded my head and now my eyes are really bad. I am referred to an eye institute upstate, but they couldn’t get me in until next month. A few weeks ago I started seeing what I had heard people describe as an aura. The Nugget was playing in the kitchen and I was sitting there watching her and all of the sudden she had this glow around her shoulders. My daughter was talking to me and I guess I got a really scared look on my face because she stopped talking and said “mom! what’s wrong?” I couldn’t stop staring at her because I was looking at it right on and it was still there. You know how sometimes you see things out of the corner of your eye but if you turn your head it disappears? Well it didn’t go away and I just kept staring.  For a minute I thought I was seeing her aura until I started looking around and everything was like that. I had a moment where everything seemed surreal and it brought one one doozy of a panic attack.  It got worse until it was happening more often than not and I started fearing for my sight. I’d heard of plaquenil toxicity in the eyeballs but not any of the particulars. I stopped taking them when everyone looked double vision. I just wish the appointment wasn’t so far away.

Well, I started writing this post 2 days ago.  I keep falling asleep and taking up where I left off.  I think I say this often, but this is the sickest I’ve ever been.

I’ll be back when I can think of something positive and funny.  Positive!

Until next time

School’s Out For Summah!

School’s Out For Summah!

Oh yes.  Summer is here! Well, it’s not really here here, but technically it’s here. Our weather is just behind the times.  It’s still sporting a rockin mullet and wearing pegged pants…aaaahhh.  It’s 2 am and you know that brings out the weird in me.  It should in everyone.  Stay up late and get random.

OK, the last week or so has been pure caca. (is that how you spell it???) So instead of whining about docs that don’t really listen, coma sleeps, glass feet, and muscles that make ya go hmmm, I’m going to post a couple of adorable pics of da Bean.

Brand New Bean!

New Bean!

My gosh. Time has FLOWN right by. Four years ago she was just a tiny bean and now she’s in school!  She had her last day of school last week and there was a graduation for the kids that are going on to kindergarden.  Oh gosh, it was so cute!  The teachers built a little stage for the kids to step up on and receive either their graduation certificate or their ‘your coming back next year’ certificate.  So here’s where it gets cute.  The teach calls the Bean’s name and she gets up from her seat, steps up on the little stage, takes the certificate and holds it in front of her for a perfect photo op.  She smiles and then after she shook the teacher’s hand she looked out at all the parents and says “thank YOU”.  Everyone laughed and clapped and whooped and hollered.  She was a rockstar.  So she is smiling like crazy and sits back down as other kids get up for their turn.  Turns out she’s the only one who said thank you (hee hee) and after the last child went up she got out of her seat and climbed onto the stage again to look out and smile at everyone.  She stole the show.

Her Day

Her Day

Isn’t she just the cutest thing evar?!?!  LOL, I know I’m biased, but she so totally is.  I wish I could give a proper shout out to her school and her teachers, but I’m not going to use names without permission, or pictures (note the thought bubble over teacher’s face) and would never give out the name of the school. hmph.  If you are reading this all the wonderful loving teachers in her class, thank you SO SO much for all of the love, support, and excellent skills that you have given her this year.  She’s come a long way from the little girl who cawed to the little girl who could express herself with words.  You guys are amazing and I can never thank you enough.  Well, she’ll be there next year so I can start thanking you again!  One of the things on my ‘well’ list is helping out in the class one day a week.  I want to be there with her, and give her class my time.  Oh how I am praying that my body will listen to my mind and mellow out on me.

Alright. I am so not tired this is ridiculous.  Today is going to be rough.  Ah well.  I’m going to leave you with a bad pic of me. Not real bad, but just not good. Ha!

Until next time

Excited Gramma Gets Publicly Dorky

Good bye 2009. You really blew. Sometimes.

Good bye 2009. You really blew. Sometimes.

How’s that for a wishy-washy blog title?  It’s so very true though. This year has seen some very extreme lows in our family but also some wonderful times and joyous milestones.  I have been very sick these past few months, with little reprieve and staying positive has been almost impossible at times.  My family is AMAZING.  Without them I could never make it through this crazy disease process.  I love you.

Thank you friends and family for all of your prayers and well wishes.  On my worst days I found comfort in knowing that I was loved by you.  When I thought about this post, I was going to write about all of the crazy shit that has happened to my body.  I’m not gonna. 2009 really kicked the crap out of me and in doing so, my family; especially my partner in crime The Big C, suffered.  Instead I’m going to focus on all of the good, positive things that have taken place.

Big and I celebrated 10 years together.  I am so very thankful that we found each other.  We have no doubt we are soul-mates and were meant to be.  It’s trippy when you think about life and all of the choices that you make.  Each decision you make, or don’t, brings you to where you are today.  All of those if if’s-‘ if I didn’t do this or that I wouldn’t have found you’.  We both are thankful (now) that our ex’es were complete jerks.  We learned the hard way how we want to be treated and how important friendship and respect are.  I love you honey!!

The Bean has really come a long way this year.  She went from being unable to communicate with me and screams of frustration to using small phrases.  She can express herself and for that I thank God and her wonderful ‘team’ at school.  Her teacher, speech therapist, and physical therapist are amazing, wonderful women.  This world needs more people who care about special needs kids like these women.  Amazing!  I am forever grateful.

OK, enough of all the sap.  I’m taking all of the good with me from this year and leaving behind all of the pain and suffering. Good bye 2009.  You were pretty wonderful.  Sometimes.

The Amazing Bean!
The Amazing Bean!

My New Year resolution is to get to the point where my symptoms are under control by listening to my body better, eating right and being more proactive in my treatment.  I want to will get well for the Bean 🙂

Just goofin around

Just goofin around

Me and the Bean are hanging out together tonight.  (Her nose is drying up thank goodness) and I’ve got the laptop with us.  We got online to watch some Sesame Street You Tube clips and I came across a site called HULU.  Well, I gotta tell you, I LOVE IT!!!  I’m all about free, if you asked someone that knows me that might say I was cheap, but I call it frugal.  Anyway, you have to check out this site.  Free movies, tv shows, video games and more.  I called the Big C to come check it out because they have free episodes of Heroes.  Yeeaaahh boeeeeyyy.

I’ll leave you with a clip of Ice Age 3, the first movie which made my husband laugh out loud in the movie theater…louder than anyone else.  One of those belly laughs where you might just snort and it’s ok…

Here’s the clip  🙂

Comment to my girls that morphed into a blog post…how’d that happen, oh yeah, I never shut up. It was too loooong.

Comment to my girls that morphed into a blog post…how’d that happen, oh yeah, I never shut up. It was too loooong.

Thanks you guys!  Those shots were taken a few months ago with an HP Photosmart digital.  I’m looking for a new Canon with a 12xzoom, easy to use, and will take kick ass macro shots.  I’m a point, pray and shoot kinda girl so it can’t be so fancy that I will be cussing at it and having no fun at all.  I can’t wait until tomorrow when we go pick up this new member of my family.  I’ll probably just go traditional and name him Can. Your probably wondering why I’m going on and on about photography…It makes me happy and it also makes me feel like a real person again.  Two things which are easy and quick to run away when your chronically ill.

I also want to thank you guys and a few others who’ve hung in there with me in my long absences from here.
Chronic I think I told you, but I didn’t tell Haney (By the way, I love the new name and format of your blog, I totally get it. It’s better now and I’m sure your others readers agree) anyway I am taking care of my granddaughter who is 2, special needs. Her momma needs some time to figure out her own life so grammy and grampa have been having so much fun with the bean. It’s been rough as I am really flaring, especially in the knees, hips and elbows, and for some fun~my back joins in. Along wih the small fiber neuropathy, and the muscle weakness and spasms-BRING IT ON!! LOL.  I am lucky enough to have my mother close by to help me out for 4 hours each day.  Which usually turns into sleeping.  But, the bean is a joy, if I am blue at all, I go sit with her and she makes me laugh.OK, I’m hitting the sack.  I’ve got some news from the Arthritis Foundation but I think I’ll leave it for tomorrow.

Peace

Flaring, Friendship, and Flatulence

Flaring, Friendship, and Flatulence

It’s a triple threat! Oh lordy I am in the worst flare. It’s almost midnight and I’m sitting here in my ratty bathrobe and I have been reading all the blogs that I follow…I have been neglecting this blog, but not on purpose!!! As my kids used to say, everything that happened was ‘not on purpose, it was on accident’, ah, that brings back memories. My kids are technically grown, I’ll just leave it at that 🙂 I think I’ll ask my son’s wife if he says it was on accident, he he.

OK, I feel the need to whine and kvech so here I go…This flare sucks! This disease sucks! I want my life back. I didn’t sign up for this. Why me? I have no control over my body, my body controls me. I hate crying. I hate feeling like a burden on my husband. I hate that my granddaughter saw me cry today (she’s 2 and she thought it was funny so at least I don’t have to worry about scarring her for life…) I hate being held hostage to the doctors ideas, or lately non-ideas~that’s ultimately worse. I hate having lost my job and along with that my insurance when I got sick. I hate paying almost 800 dollars a month in meds cost. I hate feeling guilty about being the one in the family that is bringing us down financially. I hate that I don’t have a car anymore and can’t drive. I hate that when I’m sick I mole-hole myself up in the house. I hate when I can’t make it up our stairs out of our room in the morning, and I hate that I’m weak enough to cry about that too. I hate my legs for burning and muscle clenches that would bring a horse down, I hate my burning and freezing cold hands and feet. I hate that when this happens I fall into a coma like sleep whether I want to or not. It all boils down to-no control. Who would ever have thought that they would wake up one day, not only feeling really shitty, but then come to realize, they have absolutely no control. ok, im winding down now. whew.

Friendship: My husband is my voice of reason, sometimes so much reason that I want to throw a shoe or a remote at him, whichever is closer. But it’s true. He’s always got my back. He goes to every visit that he possibly can ( I tend to clam up around docs like i was sitting in the principles office or something, they intimidate me-more therapy for me, yipee) and when I forget what I was going to say he says it for me, he tells the embarrassing stuff too. He is my rockstar. If they don’t want to go in the direction we think things should, he talks them into it. I think docs have a lot of patients that just listen to what they say and go home. I know I used to. Until I got sick with the disease called AUTOIMMUNITY. It can do whatever the heck it pleases, and I am the body that feels it all. So if the docs don’t want to hear me, the Big C tells them again. They have to listen to me, it’s my body. My quality of life. They aren’t at home with us watching my writhe in pain, trying to put the fire out on my legs, or trying to walk when my joints don’t want to, or trying to remember whatever the heck it is I was trying to remember. We learned real quick that we had to be our own champions and read read read!! As much legit information that we could get out hands on to stay on top of things. My favorite friend is my husband Big C. I love that man and he has stood right beside me through this whole awful ordeal with his arm around me and telling me that one day, it will be better. That’s just one of the many reasons I love him

Which brings to flatulence..ahh, funny word, idn’t it? Men. yep, Men. They love to rip em, smell em, they think they’re funny, and if they can get it to go up or down an octave you would’ve thought that the Steeler’s just got a touchdown starting at the 20. sigh. Sooo, Grampa can blow the bassoon. Gramma can too after chili night and blame it on Grampa. But my sweet baby granddaughter, who is ultra girly and polite with peeze and dankoo, let the biggest one rip today, it sounded like an elephant blowing. She looked at me, waited a beat and just busted out laughing right into Grampa’s arms.

That’s our girl. Through all the pain, she made my day.

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