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.

Comments

  1. says

    kd! lovely to have found you! I surfed over from Julia's blog Reasonably Well. I also have sjogren's.I was just writting on my own blog about trying to find some sjogren's moms to find out about their experiences with pregnancy and beastfeeding as I am a pre/postnatal nurse, Doula and breastfeeding counsellor. I am also a mom to 6.So happy to be able to glean so much from your writings here! Be well!

  2. says

    so happy you stopped by! yes, i had many struggles breastfeeding my 2nd daughter. i thought it would be a little easier the second time around – i had only made it to 6 mos with my 1st. this time it was only 3 short mos of constant struggle. my body just quit on me. i tried every natural remedy & supplement i could think of & made dietary adjustments & did all of the physical stuff recommended as well. i contacted my lactation consultant regularly & spent extra time with her as well. in hindsight, i believe it was in fact my sjogren's affecting my milk glands in such a way that it was causes the issues/dry-up. just my opinion. i would love to have another baby, but my rheumatologist & husband are not on board at this point. i hope for some positive changes to come soon. thanks again! – kristi

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