One of the things I promised to do with this blog is to be open about this process and share with you what I learn and experience. Each time I’ve done research to figure out the different things happening to me, I’ve become frustrated at the fact that I couldn’t always find what I was looking for. It seems that a lot of my symptoms are widely understood by the medical field, but not often talked about by those going through it. So, at the risk of showing you some of the unattractive side of this, I’ll lift the curtain a bit and expose a peek of part of the “ugly”.
Since January-ish, I have developed a very bad skin condition. It kind of looks like chicken-pox, and it covers my legs, arms and back. Not only is it ugly and incredibly embarrassing, but it’s CRAZY itchy! (Don’t worry, it’s not “catchy” so no one else has to itch but me… hee) Since I wasn’t on dialysis yet, my doctors thought it could have been due to the fact that I had so many toxins in my blood, and it was coming through in my skin. Then they thought that it was due to very high levels of phosphorus in my blood, which has the effect of being very itchy. So, I cut out most of the phosphorus in my diet (including my beloved Kool-Aid…sigh) and have been taking phosphorus binders (pills) with every meal that prevent additional phosphorus from being absorbed into my system. It didn’t do much to help the itching. Finally, the doctors all concluded that I must have what’s called Kyrle’s disease. (Curly’s? Koerly’s? I still haven’t figured out how to spell the dang thing!) Sounds so gross. It’s very rare – of course it is – and usually effects people in their 30’s who have diabetic renal failure…yep, that’s me! I’ve talked to four different doctors about this, and all of them have told me that there isn’t much known about it, nor do they know much about treatments…which explains why I haven’t been able to find ANYTHING about it online! The one thing they all agree on is that it eventually goes away with dialysis as it continuously cleans out the toxins in my blood. So far, they are correct. I have seen a HUGE improvement in the quality of my skin since I started dialysis, and it’s almost gone! I no longer have to wear long-sleeves everyday, and deal with random people stopping me to ask “if it hurts” or “if I have an allergy”!
Today I had an appt with my dermatologist to see if he has any additional suggestions to help this…maybe something to help with the itching, or something to help the redness fade a bit quicker. After telling me how glad he was to see someone with Kyrle’s come in (good for him???) he gave me a few lotions to try. He told me that it’s obviously clearing up and looking great, it just takes a long time to go away. Great. Of course, lasers can remove the remaining marks left on my skin, but that’s not covered by insurance, so I’ll just patiently wait it out. I’ve gone this long into the summer without shorts, what’s another month, right? 😉
It’s been a long week… so glad I could at least squeeze one happy hour into it! Have a great weekend, and thank you again for all the love being thrown in my direction! I love you back! 😀
What I’m thankful for today:
1. My doctor’s accent – I LOVE Boston accents. 🙂
2. Tacos – for filling my belly.
3. All my amazing friends! You guys rock!