Readjusting Expectations

I had an appointment with my rheumatologist today. When I see the Dr (vs. the NP, who I also adore) it's such a different experience.
I. Freaking. Love. My. Rheumy.
He listens, listens, listens to me. Oh, and he HEARS me! Plus, he is such a sweet little guy, and surprisingly very spiritual. And amazingly supportive.
I would trade all of my shoes to keep him. All of them.

We had a nice talk today about my breastfeeding (20.5 months so far!), my limited medication choices while breastfeeding (pitifully few), and how that is impacting my pain (suuuuuuuucks).

I explained to him that I'm readjusting my expectations and altering my pain threshold accordingly.
He got it. Thank God he did. Very few do.

((Yes, we are "Extended" Breastfeeding. I believe my child will wean when he is ready. We also have issues with solids that are extremely complicated, including my son having an extreme reaction to anything that comes from a cow (milk, beef). Heck, he can't even touch something that contains dairy without a blister forming. a blister, folks.
So he nurses. It's working- he a massive kid at 35lbs and over 37.5inches! And I wouldn't trade my nursing relationship for ANYTHING!))

OK. Back on track. So I am breastfeeding and that severely limits my med choices. I am learning to evolve with my pain and my diseases, which are currently flaring. What I considered painful 10 years ago is not even notable today. And even what drove me to a Vicodin 3 years ago is merely an annoyance today.
My Lupus is my Lupus. My Sjogren's is mine, too.
***But*** My Life is MY LIFE as well.

Today I saw a little phrase on a little piece of paper on the wall in the exam room. Here is my recreation of it, and I will be posting it around my house as a reminder:

Which is absolutely true.
I accept that the best we can do is "manage" these diseases.
I have accepted life with pain.
I am OK. I am coping. I know it's going to be there. I am prepared for it. I can handle it.
Well, most days I can handle it. When I can't, I call in reinforcements, take a pill, re-evaluate, and regroup.
I am determined to not be depressed about constant pain. There are many out there who are far worse off than I am. I can walk, jog, carry my giant toddler, play with him, chase him, cook for my family, and clean the house a bit. Now, I don't do all of those every day, but most weeks I do all of them at least a couple of times.
Don't get me wrong, I have fewer SPOONS than I had even a year ago, but I am managing them well (most days).

But I like my new adopted motto.
I'd rather Lupus and Sjogren's go the eff away, but since they won't, I will readjust my expectations and I'll be fine.

Luckily, when I am not at 100%, my little guy is happy to play a rousing game of DestroyTheKitchen or EmptyOutMommy'sTupperwareDrawers. Which are fine as long as we can play my favorite game after --- LetDaddyCleanItUpWhenHeGetsHome.
I try not to play the last one too often, though.
So I leave you with a pic of me and Mildly Amused Baby.

Because I can. :-)
And thanks for listening, Interwebz.

How To Lose Weight By Going To The Cupcake Bakery

How to go to the cupcake bakery and lose weight:
1. Control ridiculous craving for 10 days, then give in.
2. Load squirmy toddler into car and fight obnoxious traffic.
3. Arrive at cupcakery. Remove big-ass jog stroller from vehicle and load still squirmy (and now shoeless) toddler.
4. Reach for wallet, WHICH IS NOT WITH YOU. YOU LEFT THE SONOFATWIX AT HOME. Be silent and smile.
5. Reinsert now screaming, squirming, shoeless toddler into carseat. Be smiley and silent.
6. Smash hand when collapsing stroller in a million-to-one shot funky angle. Keep your yapper shut and smile.
7. Return to car, tighten every muscle in your body to utilize Kolinahr** to suppress the urge to cry, scream, and smash the car into the bakery and steal all the cupcakes. Smile.
8. Go home, ice your hand, and have some hummus like a good girl.


**geek bonus to anyone who knows what Kolinahr is. :-)

Why I Haven't Been Posting Much...

My 'Feel Bad' hurts.
I have Lupus and Sjogren's and one or both have been acting a fool in my body as of late.

We have been trying to find a pain control regimen that is breastfeeding friendly. It CAN be done, it just takes patience and letting go of the expectation of being pain free. I am finding a place I can function at without being on horrendous meds or being looped out of my mind from pain pills. 

So it's been a challenging few months.

I see my rheumatologist again in a couple of weeks for more steroid shots in my joints and another pain med adjustment. We are doing everything we can the natural route with combining herbs and extracts with stretching and biofeedback, but it's a rough road.

It's more than a little frustrating that it's not a visible disease at the moment. I am not in a skin outbreak of Lupus, thank God (I had the worst case any of my docs had EVER seen with lesions on over 95% of my body), so I look normal right now. It's nice to not look like a leper. It's frustrating because folks tend to forget you're sick if you don't look it. I just hate having to remind people that I am hurting and fighting a disease. 

"Oh, Lupus? You still have that?" Yep.

OK. I'll stop the blah blah I hurt, blah blah. We all have our crosses to bear, I know that.

I am trying to find a way to manage mine and not short-change this little guy:

Because he's what matters most. :-)

I will try to post more and regularly. I know I still have my little Cloth Diapering series to wrap up and I have been doing a few crafty projects I'd like to post. Oh, and I have been sewing and crocheting like crazy for my little shop- as soon as I take some pictures I have several things to put in it!

What I've Been Doing

Well, I've been busy
Boogs caught a nasty and was miserable for a solid week. Poor guy. Which has thrown our whole routine out the window- ugh.
But somehow I've managed to make a few custom orders.

A Very Hungry Caterpillar inspired newbon cocoon. Oh, I love this!

And a super snuggle blanket and burp cloth.

I'm finishing a pair of skirted longies and another VHC cocoon right now. It's difficult with little mister not remembering how to sleep, though. Add in the astounding pain I'm having constantly from my Lupus and Sjogren's, and I guess I should be thankful to get anything done. Bleh. Thankfully my awesome rheumatologist squeezed me in on short notice in a couple weeks, but I'll save that fun for another post. :-)

The Stare Down

It's 2:52am and I'm having a good-natured stare down with my almost-19-month-old.
My dear sweet husband is happily snoring, oblivious.

Poor Boogs was sick for almost a solid week with some evil bug that gave him a 103+ temp for days, followed by a bit of pukeage, then The Big D (think icky diapers. Ugh. I just don't like that typing the D-word), and ended with a nice rash.
And the insatiable need to be held-or-touching-mama. I admit, I did enjoy the hugs. Not so much trying to steal a shower or a potty break during which he would build up to hysterics, inconsolable by Daddy. Poor kid. Poor Daddy. Poor everyone.

I also don't enjoy how my baby has forgotten how to sleep.

So we are laying, now 2:58 in the a.m., faces inches from each other, staring. I'm trying to convince him he's sleepy via visual cues. Like closing my eyes. Nope.

He prefers silently cramming both little fists into my mouth at the same time.
Because what could possibly be more fun at 3:05am?

Oh, yeah. Zzzzz.

:-)

ICLW and A Few Thoughts

Welcome ICLW! I've heard crickets so far this week, but maybe a new post will help. I've been having some issues trying to post from my iPad, so I hopped on my laptop for the night. For any newcomers, a little background and some current thoughts are here. I totally need to do a "My Story" post soon, I know. Sorry! :-)

In honor of many ICLW participants, several friends going through fertility issues right now, and my (our) background of infertility - I saw this picture and love it:

For those of us who know infertility, this is powerful. Whether you are actively dealing with fertility issues or you have in the past, this statement on waiting strikes right in the heart.

I still have a lump in my throat, an ache in my chest, tears well in my eyes as I read this and re-live trying to survive two weeks at a time.

Two weeks of being busy with shots, pills, ultrasounds, measurements, and blood draws. Then, two more weeks of trying to be positive and pretty much holding my breath while crossing everything, wishing on stars, praying long and hard, and trying not to implode.

And by the final cycle, I was doing exactly and only that - surviving.

Oh, yeah, and I was exercising extreme self-restraint at every. single. person. who told me to relax. "Relax, and it will happen," or, "As soon as you stop trying, you'll get pregnant." 

As well-meaning as people may have been, those statements cut straight to the bone. I wanted to scream that relaxing wouldn't do shit for us - I simply do not ovulate on my own. And you can't make a baby without an egg, y'all. Nope, nopey-nope.

I am thankful every day for my son. Every minute of every day. I know exactly how lucky I am. I think about all my comrades in the ALI (Adoption Loss Infertility) community every. single. day. I read their blogs. I cry tears of joy and sadness with women to whom I have never spoken nor met. I hit my knees in prayer for them. 

I went through it alone, the only online community I knew of then was amazingly exclusive of newcomers to the site. But that's for another post, another day...

To my ALI friends, hold on. As long as you can, hold on to the dream...


Much love...
Shelley

Happy Mother's Day To ALL Mothers

I don't want to talk much about the Time magazine cover. I know most people won't open it up and read the article on attachment parenting thanks, more than anything, to the phrase, "Are You Mom Enough?"
That's just an awesome way to alienate those who aren't familiar with AP.
Yargh.
I will NOT contribute to the Mommy Wars. Nope. "Not I, not I," said the big brown bear. Nuh-unh.

I WILL say:
Whether you breastfeed or formula feed or do a combo of the two...
Whether you wear your baby or not...
Whether you co-sleep or bedshare or your babe is in a crib in their own room...
Cloth diaper or disposable diaper...
Circumcised or uncircumcised...
If your baby is still residing in your belly...
Work or SAHM or WAHM...
Crunchy or creamy...
If you are an Angel Mommy...
Whatever "kind" of parent - of Mom- you are, if you love and care for your lil one(s), I say,
"Happy Mother's Day!!!"

I will not contribute to the Mommy Wars. Good moms, like awesome cupcakes, come in all flavors. I think we should all support each other in this wonderful and scary adventure of raising our children. So long as your children are happy, loved, and cared for--- You are doing it right!

Happy Mother's Day! Love to you all!

Now, if you will excuse me, I am going to snuggle up with the little person who calls me mommy and  thank him for making today one of my favorite days of the year!