angry.

i am angry.

trying to sew a romper for eden gray.
it’s late, so i decide to call it a night.
i sweep my little threads and scraps into a tidy pile to be tossed into the trash.
i fold my work and set it off to the side.
i turn off the sewing machine and take a sip of water.
time to pick up this little pile of pins.
five pins.
five little pins with colorful, round heads.
big round heads.
five.
five stinkin’ pins.
FIVE.

and takes me longer to do that then all of the other things combined, and i’m angry.

this is what they call the ‘pincer grasp’, right?!
it’s one of the FIRST skills you develop in your life, for cryin’ out loud.
i can’t pick up stinkin’ pins, Lord!

i used to paint. i used to draw.  i used to knit.  i used to sit in my room and make those teeny little friendship bracelets for hours as a kid! i used to make beaded jewelry in college.  i used to… i used to… i used to…

how many other things am i taking for granted even right now?!

getting old just isn’t fair.

and i’m so sorry for saying ‘stinkin’ so many times and complaining yet again about this, but losing fine motor skills at just 32 years old makes me angry.  and if i don’t get angry, i will just plain ol’ bawl.

God, have mercy on these hormones.

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longing for a ‘let down’ – nursing and sjogren’s

this will be brief – if i even know how to be brief *wink* – b/c it’s already after midnight, and my hands aren’t fading fast…they flat out went kaput like two days ago. i’m heading downstairs after this to try pumping just one more time. i promise this won’t be a nursing post, but it has something to do with what i’m dealing with. my supply has been rapidly fading since introducing formula. little peanut has grown substantially since doing so, so i have very mixed feelings. one thing i am feeling is a yearning. i yearn for the ‘let down.’ if miss e is my last, i am saddened to think, like a kicking babe in a womb, i will never get the chance to feel that sensation again. it’s not a good one; it’s not a bad one… it’s just a familiar one. you know it’s coming – the life source for your infant. for me, it was relief. “yes, thank you God that it’s still working.”  i would say that nearly every day for over ten months. and now, my physical appearance and the fact that eden just rejected a last-ditch effort to nurse five minutes ago, tells me that the ‘let down’ has let go.

another unfortunate sign of that fact is the pain. my fingers…my knees…my arms and legs. it’s back. it flooded in with a vengeance. my skin is splitting across my knuckles and folding laundry feels like juggling razor blades. it makes my thoughts revisit my trips to the rheumatologist after delivering isla. i made it just three months in nursing with her before this body shut down the pump. three months postpartum, the pain started…the nearly falling down stairs…the not being able to open a pickle jar to save my life… the rheumie said, no more babies. you could die. and to that i said, ‘see ya later, alligator,’ and went and got pregnant. eden turned out to be the most wonderful pregnancy yet, and after a painfree delivery – yes, i mean that – she is also the easiest baby. ever.

apparently, estrogen has a lot to do with the pain and inflammation in my joints, and b/c my body is shifting out of nursing-mode, the hormones are getting quite wacky. like straight up on drugs out of their mind kind of kooky. so, while they get their act together, i am going to try to surrender my control issues with the blog and the business. i’m going to start going to bed earlier and taking the best care of myself that i can while i fight this stuff physically, emotionally, and spiritually. i believe God healed me of my sjogren’s. i’m sticking to that. this may be a setback, but i will have a victory.

that said, please be patient with me, klover house, and eden gray! i’m not abandoning you. i’m not avoiding your comments, emails, or questions. the truth is that i’m fighting to type even this, and i have to pace myself or my little fingers will grow tight and curly and we can’t have that! i’ve got things to do and ppl to care for.

now, off to try to pump and hoping a ‘let down’ awaits.

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Heavy Heart. Heavier Hands.

Hands.

I wish I could just get rid of you.

If I ignore you long enough, maybe you’ll just go away. *Backspace. Backspace. Delete. Hit the spacebar like I’m playing ‘whack-a-mole.’*

You stink, hands.

hands

You used to be my friends. You could curl around a softball and whip it from the fence to home plate in seconds flat. You could braid the finest hair and tie a ponytail before I even finished a sentence. Come on. What the heck is happening to you?! *Backspace. Delete. Delete.*

You are heavy.

You can’t bend right. Your fingers are weird. They snap and pop and curl. They’re lazy. They’re sleeping. They’re weird. You are numb. You fall on the keyboard like Frankenstein walking. You stomp the keys like each knuckle is weighted. You’re swollen. You are ugly. Your skin is cracked and dry, And it hurts to make a fist, because your skin doesn’t even fit you anymore. Squeezing you tightly is like trying to stretch a rubber glove around a basketball.

You stink, hands.

You stink.

If i just fight past it and pretend you’re not failing me, I think you’ll go away. you’ll stop this ickiness and wake up again. You have to wake up again. I have things to do.

I am tired of you. I don’t want to wedge you under my leg anymore, trying to lay you flat – trying to make you feel well again. I don’t want to stretch you out all day and night, hoping that this will be the last time before something miraculous happens.

You stink, hand. You just stink.

I think back to when I’d ‘hit the gym’. How you were simple tools in executing my agenda. You just did whatever I wanted – whatever I needed. You were mine, and you worked. You are no longer mine. You hate me and don’t work for me anymore. But maybe if I just pretend that you do, you will, and we’ll be a team again. I keep thinking that I’ll fix you. I’ll start running again. I’ll do push-ups and jumping jacks. I’ll pick up a paintbrush or ride a bike, and somehow all of that ‘normal’ stuff will pump a whole lot of ‘normal’ back into your veins.

I know I can’t just get rid of you, but I sure wish that I could. I know I can’t fix you, but I sure want to. As much as I can’t stand you, I could cry over you. I miss you. If you get better, then it’ll be a miracle, and you know what?

I believe in those.

I believe I will have my hands again.

Praying for all of you struggling with sjogrens/rheumatoid arthritis/autoimmune disease symptoms. They’re not normal. They’re not of God or from God, but their healing will be for His glory.

And these dysfunctional hands type, “Amen.”

video009 from Kristi D Klover House on Vimeo.
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pinterest and prayers

i’ve caught myself lately looking at pinterest a little differently. you know how you get those notifications in your e-mail that read, ‘so-n-so has repinned 1 of your pins,’ or ‘so-n-so started following 1 of your boards’? well, i usually just glance at them quickly and delete them. a few weeks ago, i received a notification, and i didn’t recognize the pin (the pinner renamed it, so i didn’t know right away which pin it was), so i clicked on the link just out of curiosity. it was this pin. my miscarriage story. the emotions came flooding in. i still think about that post, and i rarely go a day or so without thinking of our heaven baby. ava knows she has a sibling in heaven, so we may have a conversation or two every once in awhile. we keep it light and simple. anyway, so, i followed this pin back to the other pinner’s board and read her caption. she had recently lost a baby, and the post had ministered to her. immediately, i realized why our connection was no coincidence. i was called to pray for her heart.

i was reminded of that today when i opened my e-mail and read that a woman started following my sjogren’s board. you probably only follow an illness board if you’re somehow afflicted by that illness, right? i don’t go around following random boards for the fun of it. i follow what’s applicable to me, and i’m sure others do the same. so, when i saw that this young woman decided to follow the sjogren’s board, i again felt compelled to pray for her. to pray for her healing, her faith, her outlook in regards to that disorder. it’s no fun, and i remember the pain well. i know God has brought me out of that muck, and i’m believing the same for her and anyone else being tormented by that annoying illness.

i believe that God allows trials to happen in our lives, so that we can turn around and minister and pray out of our experience(s). if you swallow up the bad, pretend it didn’t happen, or keep it locked inside, it becomes like a cancer. you won’t be helping yourself or anyone else for that matter, so use it in some way to make a difference. even making the choice to say a simple prayer for a random stranger. it may seem small, but prayer shifts the heavens in a mighty way.

be blessed,

kristi

sjogren’s schmogren’s

this WAS me…

this IS me NOW thanks to sjogren’s

{image source: www.sjogrens.org}

{emphasis & side notes added}

Arthritis and Sjögren’s Syndrome

Sjögren’s syndrome is a chronic disorder that causes insufficient moisture production in certain glands of the body. It occurs when a person’s normally protective immune system attacks and destroys moisture-producing glands, including salivary glands and tear glands. The lungs, bowel, and other organs are also occasionally affected.

Sjögren’s syndrome is named after the Swedish eye doctor, Henrik Sjögren, who first described the condition.

Sjögren’s syndrome may cause the following symptoms:

Extremely dry eyes causing a feeling of grit or sand in the eyes or a burning redness. {what started this mess in the first place}

Extremely dry mouth and throat causing difficulty with chewing and swallowing, decreased sense of taste, difficulty speaking, an increase in dental cavities, and dry cough or hoarseness. {it stole my love of chocolate for cryin’ out loud}

Enlarged parotid salivary glands (located at the angle of jaw) and sometimes infection of these glands.

Excessive fatigue {i’ve taken enough pregnancy tests to pay for a six month supply of diapers}

Aches and pains in muscles and joints {hello! i feel like i’m 100 years old}

Less common symptoms of Sjögren’s syndrome are:

Irritation of the nerves in the arms, hands, legs, or feet (neuropathy). {my lame left arm & legs make me want to scream obscenities}

Thyroid gland abnormalities

Skin rashes {harmless, but ugly}

Memory loss or confusion. {brain fog plagues me}

Numbness or tingling. {annoying…}

Gastrointestinal problems. {thanks for taking date night away}

Inflammation of the lungs, kidneys, liver, or pancreas.

Cancer of the lymphatic tissue (lymphoma), which occurs in less than 1% of patients.

{source:webmd}

some days i just want to stay in bed & give in to feeling like poo. thankfully, my husband is pretty patient with me & helps me in the mornings. ava coming to my bedside on the bad days, reaching for my hand, & saying, “come on, mom. get up with me,” tugs on more than just my heart.

i need to reverse this thing & turn my life around. i can’t deteriorate. i have to get better, not worse. i can’t even afford to stay the same.

often, when i feel a cold coming on – i literally refuse to believe it’s there & i swear i will it away about 90% of the time. i know not everything’s mental, but a part of me thinks that if i just believe it hard enough that i’m “normal,” then i’ll start actually feeling normal.

my goals:

1 – start & keep an exercise routine that focuses mainly on stretching these joints & sore limbs…
2 – run at least once a week…
3 – cut gluten down to a minimum…
4 – “wrestle” with avey everyday…
5 – get out of my house at least twice a week (sahmer here)…
6 – fix myself up on more than just sundays (again, sahmers may be able to relate)…

maybe if i start acting fine & refusing the disease outwardly, the symptoms will go away inwardly. faith? crazy? at this point, i don’t really care…

some other friends blogging about sjogren’s…

{reasonably well}

{sjoggie stahmer}

{falling with grace}

kandoo experiment.

so as you may or may not know already – i apparently have sjogren’s (show-grins), or what i refer to in my own little head as “faux-grins,” for obvious reasons. my grins are often masking the annoying pains & craziness that have overtaken my once very happy & compliant body.

see? that girl again. kooky.

one of those annoyances is chronically dry, cracked skin – like so dry it hurts all of the time so much so that i can’t even tell when it has cracked & i’ll just happen to notice scabs & bloody knuckles at any given moment. gross, huh?
which all leads to just more hand-washing
(watching babies in my home & being a germ-o-phobe helps with that as well…sarcasm there, people)

anyway, a while back i ran out of the usual {bath & body works} soaps i stockpile throughout the year.
being the cheapo i am, i did not replenish the stash right away.

instead, i would grab some “soft soap” or “dial” whenever it was on sale for $1 at our local store.

well, about two months ago, i had a coupon for the pampers “kandoo” kids soap, so i figured why not – ava will love it…

as it turned out, mom & dad loved it too – it.smells.so.yummy.

i had it in the powder room at first (where ava does most of her pottying), but when the sink was slathered green on more than one occasion, i relocated ava’s new favorite object – aka “her” soap – to the kitchen sink.

long story shorter, dad & mom used it all.

then, b&b had a killer sale & mom stocked up on some lovely, yummy scents of her own.

but you know what i noticed later??? my hands weren’t cracked & my skin didn’t look like it had been scrubbed thoroughly with sandpaper! i even said to my husband, “look at my hands! they haven’t looked this good in a long time!”

do you think it was a coincidence?!

i don’t know, but since switching back to “the norm” – my hands are a mess again

so i’m going to conduct a “kandoo experiment.”

the next time i go to the store, which is like every day, i’m going to pick up that wonderful green stuff.

i’ll let you know how it turns out & if this stuff really can help our skin.

all you sjoggies out there – what do you think? have you found any unexpectedly helpful products?

i’d love to hear from you!

thanks for checking in…

kristi

asking.

i hate my left hand, my left arm, & the left side of my head.

hate is a strong word, i know…

but i hate them today.

off & on for a very, very long time – long before ever knowing that it wasn’t “normal,” & long before ever hearing about autoimmune diseases, random patches of my skin will hurt out-of-the-blue. it feels like a horrible patch of sunburn. your clothes rubbing across it, your baby brushing against it in what is meant to be a loving moment, you resting it on anything…hurts. usually, it will stop as randomly as it starts within 24 hours…but not this time. we are going on five long, irritating days here.

so, i hate these parts of me today. they woke me up twice last night (on top of the children waking me three additional times). i’m feeling much like a zombie this morning…an irritated, frustrated, tired person.

the pain just keeps shifting along – reminds me of gently swishing bath water. the sensation keeps oozing from one spot back to the other throughout the days. today, it’s off of the top of my hand & has found its second home in my outer forearm again. this hurts.

you know that uncomfortable ache that comes after hitting your funny bone or having your reflexes tested? well, my joints in my wrist & elbow feel like that non-stop. my hand keeps going weak & feels worthless. every time i try to make it do something it’s supposed to do, the pang returns & my elbow retreats & i’m back to being frustrated w/its worthlessness.

to top it all off – some meanie must be pulling my hair in my sleep, b/c i have a large spot on my scalp that is burning like it has been ruthlessly pulled all night long.

five days of this.

my arm/hand weakness is the most frustrating b/c it’s affecting my interaction w/my babies. common, mundane actions are hurting like the dickens today…unbuttoning the snaps on a onesie…washing my hands (which i do 50 million times a day)…curling my hair…i’m very mad at this stupid body of mine.

hot water seems to help, but i can’t exactly hang out in the shower all day…

i once researched & wrote an exegesis paper in college about Solomon’s great prayer for wisdom (1 Kings 3).

At Gibeon the LORD appeared to Solomon during the night in a dream, and God said, “Ask for whatever you want me to give you.”

Solomon’s response:

So give your servant a discerning heart to govern your people and to distinguish between right and wrong. For who is able to govern this great people of yours?”

The Lord was pleased that Solomon had asked for this. So God said to him, “Since you have asked for this and not for long life or wealth for yourself, nor have asked for the death of your enemies but for discernment in administering justice, I will do what you have asked. I will give you a wise and discerning heart, so that there will never have been anyone like you, nor will there ever be.

did you know there are multiple hebrew words used in place of the simple english word “ask?” i hadn’t until researching this passage thoroughly.

now, i wish i had that paper to re-read or a concordance…i’m going to have to buy one.

b/c in matthew 21:22 we are reminded…

If you believe, you will receive whatever you ask for in prayer.

you will receive. not perhaps, maybe, if i feel like it…you will receive whatever you ask for in prayer. well, i am asking for this pain to stop, Lord, but i don’t have my paper & i don’t own a concordance yet, so can you please remind me…

what attitude of heart & frame of mind do i need to have in order that these sensations will leave me & never come back?

it takes a celebrity…

sometimes, in order for people to pay more attention to something, it simply takes a celebrity.

not sure why – they’re just like you & me, but it’s true in a lot of cases.

just this morning, i read an article in people magazine about venus williams…getting back in the game.

the cover displays the words “from health crisis to comeback.” at first, i thought it was going to be a condition that was entirely sports/athlete-related. i never would have guessed that i was about to read something that would hit so close to home…

venus williams shocked the tennis world when she dropped out of the u.s. open. now, for the first time, she talks about the chronic autoimmune disease that threatened her career.

hello! that perked my ears…or should i say eyes, since i was reading? hmmm…

anyway, then, i spotted one of those little boxes in the article that read…”what is sjogren’s?”

oh my goodness. this is me.

since being diagnosed with this, i’ve heard everything from, “well, that’s good, right? it could be worse.” to “isn’t there like a special cream you can use or something?”

it’s not like that. i wish it was that simple.

for so long, i’ve been so tired. i thought i was pregnant numerous times b/c of how exhausted i was. my own body attacks my guts, so eating is rarely a pleasure anymore. i can’t eat without wondering…am i going to be sick after this? for example, we went to a new year’s party & after the first few bites of food, my stomach started that familiar ache, but i was still so hungry.

i went from wearing my contacts everyday to almost never being able to wear them. i know it sounds silly, but i miss my old face. i think of someone in my family that has worn glasses for as long as i can remember & when they take them off, it looks like they’re a different person all together. i don’t want my girls to think i look unfamiliar without them on.

the medicine they mention in {this article from the ny times} (hydrocholor quinoline) – i’m on it – and it does seem to be helping with the joint pain. my knees, hands, elbows & hips don’t feel as lousy. i can move freely now & bend without grimacing, but it can cause irreversible retina damage.

it does give me hope though that someone with such celebrity shares this struggle with me. now, i anticipate more articles & advice to pop up everywhere & hopefully, more understanding too.

i like that she said the diagnosis brought her some relief, b/c it “meant that [she] wasn’t crazy & [she] wasn’t lazy.”

yes. neither am i.

the two things that are most helpful in preventing flare ups though…rest & avoiding stress. quite the challenge for a mom, huh? especially the rest part…thank you, babe for letting me sleep in this morning…i’m gonna go to the store to buy you some yummies now.

to all of my friends…if you know someone with sjogren’s, please feel free to connect us/pass the blog address along. i’d love to hear from other women who are living with similar issues. hopefully, we can be a help to one another…

other posts discussing my road to sjogren’s can be found under the labels “health” & “sjogren’s” in the right sidebar.

t.d.i.g.t.d.m.b.t.i.a.p.i.d.h.

t.d.i.g.t.d.m.b.t.i.a.p.i.d.h.

the.disease.i’m.going.to.do.my.best.to.ignore.and.pretend.i.don’t.have…

sjogren’s.

pronounced “show-grins.”

i got the call yesterday. finally, some answers. an answer actually…sjogren’s syndrome.

it’s what my rheumatologist has been suspecting all along, but i guess my lip biopsy provided him with the confirmation he needed. he said he’d further explain at my follow-up in january. until then, continue, er, start the meds he gave me like 2 months ago.

i hadn’t started them yet, b/c frankly, i’m not a “pill person,” & i don’t like putting stuff into my system if i don’t have to. i’m one of those “let’s eat chocolate & drink coke & coffee until the headache goes away or you forget about it & if that doesn’t work, take a nap.” i loathe pills.

so, i guess i’m going to start them today…

i never even read up on them. plaquenil is one of them – a side effect is retina damage – another reason why i don’t bother with what’s in the bottle…the side effects are usually just as bad or worse than your problems themselves!

anyway…this is the start i suppose of a new lifestyle…new diet…new regimen…new limitations…

but for the most part, i’m going to ignore this thing. i’m going to will it away. i don’t have time for you sjogren’s. i don’t have time to run to the bathroom during date night anymore. i don’t have time to put lotion on my cracked, bleeding hands 24/7. i don’t have time for all of the stinkin’ doc appointments. i don’t have patience for you either, so unfortunately, you’re just going to have to get lost.

if you are also struggling with an autoimmune disease…i’m up for hearing from you!

this is the most helpful website i’ve encountered so far…www.sjogrens.org i’m looking forward to educating myself so thoroughly on this stuff so that i can function again so naturally that i won’t have to give it a single conscious thought throughout the day. then i can truly go about living as though this is the disease i don’t have.

ouch.

lip biopsy today, peeps.

it hurts somethin’ terrible.

and it was gross.

i’m exhausted from a VERY late night/early morning first.time.EVER.black.friday.nearly.twenty.four.hour.shopping.extravaganza

my abnormally larger bottom lip is throbbing at me…

hope you all had a wonderful holiday with your family/friends.

i have more to say about my rookie shopping spree & this centimeter-squared hole in my pout, but right now, it’s time to sleep!