Follow-Up

Follow-up on my last (non-RA-related) post:  Unbeknownst to me, my daughter designed a website so that once she figured out how to do online donations, she’d be ready to go.

She figured it out, and the website has been published.  I’m amazed that she took the initiative to do all this!  Last year when my daughter’s group went to Guatemala, they worked with three or four different organizations.  This weekend we tracked down which organization is in charge of the brick houses that my daughter wants to raise money for, and discovered that they’re already set up to accept online donations.  That was much easier than setting things up with the Secretary of State.

Please click through to her website, Guatemalan Houses.  (I’m not asking for donations; many clicks will bump her site up on google searches.)

Thank you.  Next post will be back to RA related issues.

Red Tape

Guatemala is a beautiful land.  Tourists love to see the ancient Mayan ruins, the steaming volcanoes, the lush jungles, and the gorgeous beaches.

There are other aspects of the country that tourists don’t always see.  Last year, my two oldest kids spent two weeks volunteering in Guatemala.  The group did a little sightseeing as well, so my daughter has a few photos of the tourist sites.  She also has other photos, such as this one:

You and I might see an old tea kettle over a campfire.  In fact, this was the “kitchen” for a family of eight.  The four-cup tea kettle is their cookware.  It is only half full, and that will be the entire family’s meal.

Or this one:

 

A woman lives here with her four children.  Their “house” consists of some sticks holding up a few pieces of corrugated tin.  My children had never seen such poverty.  In truth, neither have I.

One of the in-country people that my kids worked with hires locals (providing jobs) to build cement-block houses complete with roof, windows, door, and concrete floor.

My daughter wants to raise money to help, but has run into all sorts of red tape.  She had a few terrific ideas (ask for donations, sell products), but contacted the Secretary of State’s office just to make sure there wouldn’t be any legal problems.  It was quite discouraging to learn about government red tape.

First, she wanted to put donation jars in coffee shops, and encourage people to donate, but that’s considered fundraising and would require the organization in Guatemala to file paperwork here.  Then she thought about buying large cases of popcorn/dried fruit at Costco, and selling the individual packages, but doing that would require her have to have a business license and file a tax return.  It just shouldn’t be that hard to get people to donate to help others without having to unravel the various government regulations.

If anyone has ideas on how to get around the red tape so my daughter can do some fundraising to help build houses in Guatemala, I’d love your suggestions.

Elbow Dandruff

When I was little, my parents were happy to have money to put food on the table.  There wasn’t extra for luxuries.  Television was a luxury.  Our first TV set was a hand-me-down from a family friend who had just purchased a new color television; we got their cast-off black & white.  I was in the fifth grade.  Finally, my brothers and I got to see all the shows that our friends had been talking about.

We also got to see commercials.  What an education!  I still remember watching a commercial for an amazing product that claimed it would get rid of white flakes on a person’s head.  Turning to my mom, I asked if she thought dandruff shampoo would work on elbows, too.

Puzzled, she looked at my elbows and knees.  “Oh, that’s just dry skin.  Everyone has that.  Use hand lotion.”  Well, I had oily skin, not dry, but I tried hand lotion.  It didn’t make any difference, so I quit using it.  Eventually the elbow/knee dandruff went away and I forgot all about it.  Until recently…

Reading about different rashes, I keep coming back to psoriasis.  My rash doesn’t look like any of the psoriasis photos online, but psoriasis often begins on the elbows and knees.  It can go into remission.  I wonder.

Thinking back, I’m curious why my mom thought everyone  had white flakes on their knees and elbows.  I’ve never met anybody  with elbow dandruff, yet my mom (whose mother had psoriasis) thought that it was perfectly normal.  Did she – and all her siblings – experience this, too?

Unfortunately, I’ve developed more spots since seeing my rheumatologist.  Monday morning I’ll phone to ask if I’m supposed to see my family doctor or a dermatologist for the biopsy she wants me to get   :(

My rash doesn’t sound like any of the rashes I’ve read about.  The disconcerting new development is that the normal-appearing skin around the rash has started peeling off!  It’s multiple layers of skin – way deeper than a sunburn – and leaves the area feeling raw.  The little area on my hand wasn’t too bad, but it was alarming to rub my foot and have a 3×4 patch of skin fall off!

Then again, maybe it’s not even remotely like psoriasis.  This rash only appeared after I started taking Flexeril – one of the rarer side effects is a rash.  It would be nice to have such a simple solution.

One part of me is worried.  What has gone wrong now?  I found more blisters yesterday; today they’ve turned into more little bumpy patches.  How long until the skin falls off?  If this is related to the RA, then obviously my medicine isn’t working.  Has my third biologic failed?  That would be something worth swearing about.  The rheumy said we’d try a different class of medicine next, and it would be an IV.  “IV” should be spelled with many many many dollar signs.  There’s the time-loss to consider, too.  I don’t need this.  Maybe I don’t want to know what this rash is.

Another part of me is fascinated.  The more I learn about the body and the things that can go wrong, I wish I’d gone to medical school.  Not that I don’t love my life the way it is, but… what a privilege to study all the intricacies of how the body works and spend a lifetime keeping up-to-date on new discoveries.

I think of how childhood chicken-pox can show up decades later as shingles.  My elbow dandruff is but a faint memory; I’m really hoping that this new rash isn’t related.