Saturday, November 20, 2010


we love our life, every single ounce of it.

but recently, we have been thrown a couple curve balls, and we're learning to love those now.

several months ago, kyle started having these weird symptoms of swelling and stiffness in his extremities. (hands mostly). so that took us to the doctor, and they weren't real sure, but thought it was probably carpal tunnel.

so kyle started wearing wrist braces, and taking anti-inflammatory meds. nothing.

back to the doctor, which took us to a neurologist, who said yes, you have carpal tunnel, but it's caused by something else, and he didn't know what.

well, then his lower legs started swelling, back to the doctor.

then to a rheumatologist, and dermatologist, and anything else that ends in -gist.. and trying every kind of anti-inflammatory and antibiotic.

about a month or so ago, we finally got a diagnosis!


we put our degrees in google to work, and researched like nobody's business, trying to figure out what the heck we were dealing with.

not the best idea when you've just been given a rare diagnosis. it kinda scares the heebeegeebees out of you!

scleroderma is a rare auto-immune disease where there is an over production of collagen in the tissues in the body.

what does that mean?
kyle's skin is becoming very thick and hard, which is immobilizing his joints. which stinks!

the downside with an upside?

it can get into all your organs, doing the same things to your heart, lungs, throat, etc. which really stinks!!

kyle has been through umpteen million tests (lots of needles involved. not kyle's fave), and it has been determined that it is not in any organs! PRAISE THE LORD!

the doctors are fairly certain that kyle has "limited scleroderma", which means it should stay in his skin, so we are praying daily, that is the case.

this is a "for the rest of his life" kinda thing, so there will be appointments from now on checking all those organs to make sure it hasn't spread.

so the treatment for scleroderma? well, that's the kicker. it's so rare, that people don't know how to treat it.

when we got the diagnosis, the doctor said, "you have scleroderma, and honestly, there's nothing really to do for it." awesome!

but, alas, we have found a way!

kyle is going through experimental treatments at southwestern medical school.

he is on several different medications, and he "tans" 3 times a week.
yes, you read that right, he tans. it's not a traditional tanning bed, it's got different kinds of lights, but he is getting tanner as we speak! kinda funny. the lights are hopefully going to be able to "break down" the collagen.

he has to go to dallas to tan at 7 am, three times a week, which is lame and tiring, but if it works, it will be totally worth it!

and praise the Lord, we are not going to dallas several times a week for chemo, or something equally as terrible.

we are so tired of doctor appointments (especially kyle, i just tag along), but truly trying to be thankful that the diagnosis is not any worse, even if it does stink. like a lot.

God has a way of opening our eyes, to show that we are not in control. nor the perfectly healthy little family like we "think" we should be.

it's been a tiring journey, but we do rest in the fact that God is sovereign, and will not give us more than we can bear.

so yeah, we're doing well, and still loving this life. curve balls and all.

and because no post is complete without a picture.. here's kyle and jillie bean at one of the many appointments. yes, she tagged along to many appointments, because i want to be there, too! all the doctors know her well =) and she actually behaves quite well there, which makes it a lot easier!


Angela Collins said...

Heidi had told me a little about this a couple of months ago, and I'd been praying for y'all. When I talked to her, I don't think y'all had a definite answer yet about whether it was limited to the skin or not. Praise the Lord for a good answer to that question! I'll continue to pray for y'all and that you'll see good results with the experimental treatments.

Stacie A said...

Hi there ~

Your blog came up on my google Scleroderma Alert.

I'm sorry that your blog had to be alerted to me because that means that "The Big S" as I call it, has in someway affected your life - but I am glad that I came across it, because believe me - I KNOW how scary it is when you get this diagnosis and do your google research.

I too have Limited Scleroderma - which is kind of a mis-nomer as Limited does not mean "Not as bad" - it just means Limited skin involvement and probably an ANA with Centromere Antibodies like myself.

People that hear or read the "Limited" part of the DX tend to think "Oh then it must not be that serious" - Which as you have found out is most certainly not true.

I'm with ya on the "If I never see another MD for a test" I'll be a happy camper - but, alas, that is par for the course for us Scleries for the rest of our eventful lives.

Please DO NOT believe everything you read on the internet, especially prognosis. It will scare you and do NOTHING for you, except create anxiety and stress - which neither of you need, and as I am sure you have read, is not good for Scleroderma patients anyway, as it can cause Flare Ups to boot.

I have little skin involvement at this time Just the swelling and stiffness in my hands and feet..a few hard spots but nothing to write home about. Mine has mainly affected my joints, muscles and caused fatigue and as far as organ involvement, mostly my GI system and esophagus.

I dont want to post too much here, but I wanted to share with you my Blog address. I know I felt SO alone when I was diagnosed. And I wanted/needed so much validation about the disease, its symptoms and progression....but because it is so rare - that is pretty hard to find from a real person.

I was lucky and received some great posts, found a support group here in AZ and called the Scleroderma Foundation in Boston who really calmed me down.

I did my testing at the Mayo which wore me out and after DX, left me kind of empty and like.."What Now"

Which is why I started my blog. In the hope that someone else newly diagnosed or family, loved ones or whomever - could read how I really feel. Compare notes.. and see the emotional side of things.

It's a lot to deal with...

Anyway - Please know that if your husband has any questions or ever wants to chat, just leave a comment and I will give you my private email.

My Blog is:

I try to write it as real as it gets, which means I don't hold back - not to scare because there is nothing too scary in the blog - but just real so that people know what my experience has been like in case they are feeling those things (albeit physcial, mental or emotional) themselves.

All the best to you.


the nelsons said...

thanks angela! yeah, it was kinda weird to talk about before we knew what was going on because it was so abstract, but now we at least have a name and definite symptoms, etc. so that's a little easier.

stacie--thanks for the info. we checked out your blog, and appreciate you letting us know about it!

Donna Kelso said...

I just read this blog, Kaci, and didn't know what you guys had been dealing with ... so that just goes to show that your faith is being lived out for all to see ... especially when we don't know what's going on!!! Thanks for sharing your heart with us and will pray for God's continued healing hand on Kyle and wisdom from the doctors for his treatment!!! I love the fact that Dan married into your family ... your Mom and Dad did a GREAT job raising all you guys!!! love, donna