Friday, October 31, 2014

Compassion Joys: October

It's time for my favorite post of the month! I'm linking up with Jill at Compassion the button below to read about other sponsors' Compassion Joys!

 Compassion Family

We have so much to be thankful for this month!


This month we got two letters from Anahi (who is sometimes called Katherine), first letters from Amisha and Angelina, and letters from Reine, Patricia, Elisha, Jayid, Caleb and Prayer! We also got a letter from Compassion saying that Kajal's center is no longer on probation!

New Kids!

We got two new correspondents this month- 17 year old Marc in Haiti, and 11 year old Merlyn in the Philippines!

Photo Updates! 

Right after we got Marc as a correspondent, his photo got updated! He looks so sharp!


Brendita in Mexico and Prayer in Indonesia both had birthdays on the 22nd! Prayer turned 12 and Brenda turned 7!

Compassion Events!

On the 18th, Lifeway stores around the country had special days with Compassion representatives on site to talk about the program. Lifeway and Compassion are embarking on a new adventure as ministry partners! My mom has worked there since I was a tiny baby (six weeks old!) so as soon as we heard this was going to be a thing, I started checking the events page on my advocate profile so I could sign up to work. We didn't get any new sponsors that day, but we were able to encourage a sponsor who recently lost her 13 year old sponsor child in India, who was sold into slavery by her parents and became pregnant. It was so sad. I think that this event was a good introduction, but the sponsorships will really come in when people get used to seeing Compassion materials at the stores, and talk to the employees who are sponsors. We were just kind of visitors that day. I had my mom go through the advocate resource catalog and pick out some stuff for her store, and that all arrived today!


I'm so excited that this month I was able to send THREE gifts to my sponsor kids! Shelley offered to take gifts to Victor and Mary in Kenya, and the day I got Merlyn, my friend Katie (we did a baggie exchange for Tanzania and Peru earlier this year) messaged me to say she is going to the Philippines next month, and I was welcome to send a little bag for Merlyn! Here are their gifts below.

Merlyn is getting a mini beach ball, a jump rope, crayons rainbow socks, a manicure set, a Hello Kitty watch, barrettes, a journal, and Hello Kitty pencils! 

Mary is getting a photo album, a bookmark, colorful pens and pencils, a pretty necklace that says "hope", candy, an eraser, an ornament to share with her family, a nail file and a beautiful Bible with her name imprinted on it! I also made her a purple and pink scarf, as those are her favorite colors! 

Victor is getting a photo album, soccer pencils, candy, an ornament to share with his family, bookmarks, a bracelet and necklace, a Bible imprinted with his name, and a drawstring University of Kentucky backpack.

I also was able to arrange to send a gift to Erick in Ecuador when a friend goes there next year, and my mom will be able to send something to her girl Jessika there, which she has wanted to do for a long time. We're able to send gallon-sized bags to the Ecuadorean kids, so it will be lots of fun to pick stuff out for them over the next few months!

Tuesday, October 28, 2014

Where do we go from here?


This is something I've been thinking about for a while, but I haven't been quite sure how to go about discussing it. Frequent visitors to my blog know my deep love for my sponsor kids, and my recent (within the last year) passion for travel. I took a huge leap of faith registering for the Tanzania trip last fall, and took that amazing trip in the spring. Since that time, it's semi-accurate to say that I've been bitten by the travel bug. In a sense, I want to go everywhere and see everything. But unlike traditional wanderlust, it's really not about me or my desires to see the world. I've had a longing to travel and love on God's people and do whatever I can to help since I was a kid- but for a long time I thought that it was not a possibility for me because of my anxiety. Then I was able to overcome that, and it's unlocked something inside me. I am itching to go on my next mission trip. I can't really put into words the depth of longing in my heart to go and see and hug and pray and love.

So I started planning my next trip. There were a few financial things that I had to get in place before I could register or take a definitive step forward, and I started working on that. I had a fundraiser with the Haitian ornaments that was moderately successful. I started learning to crochet, so I could make things to sell to fund my trip. Around this time, I decided that I would try to go to Haiti. It is a place very near and dear to my heart, and Compassion has two trips there next year- one in the spring, and one in November, so if I couldn't rally the funds for the first trip, I would make the second. I found myself being frustrated with how the fundraising was going, though. It just wasn't as successful as I had hoped.

And now, life has happened. I've been thinking a lot lately about my future, because of my recent diagnosis with EDS. And to be honest, I do a lot of worrying, too. There are a lot of unknowns with this disease. I don't know if I'm going to stay the way I am now, or if my physical condition will deteriorate. I don't know if I will be able to work until retirement age. I don't know if my husband and I are going to be able to raise children in the home we bought three years ago, because the bedrooms are upstairs, and sometimes I just can't make it up there. This weekend, after suffering with intense pain in one hip (or SI joint) for two months, I "slipped" the other one standing in line for a Halloween event. I don't know  where my life is headed, but not being able to see very far ahead is frustrating and at times downright scary.

Because of my health issues, I have put my search for a new job on hold for the time being. If a different position became available at another library branch, I'd definitely try to go for that, but I am putting the "career search" on hold for now. At my current job, I have union protections and other helpful things in place to protect me if I start having more frequent challenges with my health. And my job isn't as physically strenuous as some of the other things I had been looking into, like working at a preschool or with the elderly. I'm having trouble with this concept- the waiting to see what happens- not only because of the frustrations I have with my current job, but also because of our financial situation. Seeking better compensation and more hours was and is a huge part of why I was job hunting in the first place. Now that's on hold, and I keep bringing in more debt. Doctor's visits, medications, treatments....what's down the line? Time off work? Mobility aids? I don't know. Brandon has been working incredibly hard lately- 55 hours a week and up- which has been helping us buy a few groceries and feel a little more at peace when bills arrive and unexpected expenses pop up, but this situation is temporary and we don't know how much longer it's going to last.

So I've been looking at ways to save money, to help us out. There is no cable bill to drop. No fast food to cut back on. It's hard to find places to cut back on when things already feel so tight. I know that sometimes people have to cut back on their sponsorships when they run into financial challenges. That's  not really an option for me. My sponsor kids are my life. They are my purpose. I would give up my prescriptions and spend all my days puking and being miserable before I did that. So I think I have come up with a plan.

I know of many sponsors who sell crafts online to raise money for Compassion and help support their sponsorships. I've seen some really beautiful stuff on Etsy and other places, and I think it's great that folks are using their artistic talents to help kids! And I'm going to try to get in on that.

My "fundraisers" tab on the top of my blog will be redesigned soon. I hate Etsy, so I'm just going to sell my crafts here. All proceeds of whatever I sell will go to Compassion, for the sponsorship of Jayid and Tasya. If I raise more money than their sponsorship fees in a month, that money will go to the Child Survival Program. The sponsorship fees for the both of them are $76 a month. I'm hoping that each month I will be able to have at least a portion of that amount covered by selling my crafts online.

I know people have weird feelings about giving money. People don't fundraise for vacations, but mission trips are ok. They don't fundraise for having a biological child, but adoption fundraisers are great (though some sad people have problems with those, too.) I'm not raising money for medical treatment or a special medical need like home improvements for mobility reasons, but my main reason for moving to this kind of (on-going, semi-permanent) fundraiser is because of medical reasons.

I'm so sorry that I don't know when I am going to be able to go on another mission trip, if I ever can again. I hate it. Thinking about it makes me sick. Thinking about this whole thing makes me sick. I'm scared, and worried, and I don't like not knowing what's going to happen. With every other medical problem I've had in my life, I've had an end-date in mind. "I'm having surgery on this date, so within six weeks I'll be back at work, and in a few months, life will return to normal." "I'm having a depressive episode right now, but even if it lasts a few weeks, I know it's going to end sometime." This isn't like that. It's permanent and life-changing, and I hate it. So I really would like to apologize, even though I think (hope) everyone will think it's unnecessary, because people who supported my fundraiser for the Haiti trip did so for a specific reason, and that reason has fallen away. The bit of money I brought in from that is going to sit in my special savings account for the foreseeable future, just in case the opportunity presents itself and I would be able to go on another mission trip.

And if you don't mind praying for me about this whole thing, I would appreciate it. This week especially, I have been having a pretty hard time coping with life changes and my diagnosis and these random road blocks that keep popping up, getting in my way.

Keep an eye on the top of my blog, though. When I get pictures taken of the inventory I already have, I'll be posting them in a special, share-able section on my blog. I hope that this venture is going to be a success!

Monday, October 27, 2014

Outgoing Mail

The mailman hasn't been by my house yet today, but I'm not sure that I'm going to have any letters to post for Mail Call Monday. I joked on facebook last week that I think the post office is replacing all of my letters from my kids with campaign ads- no letters from my 29 Compassion children, but lots of uninvited pieces of paper that inexplicably have my name on them? Sometimes my maiden name? It's a conspiracy, I tell you!

Anyway, it's been a little while since an Outgoing Mail post, so I thought I'd write one up for this uneventful Monday.

Last week I sent out letters for all the boys. I was having a little trouble coming up with a topic, and happened to recall reading some news stories from my kids' countries recently. I thought it might be fun to give my kids a few updates on my own country, because I like following the news from theirs! I decided to focus on just a few topics in my letter. Here's a sample of what I sent:

Hello, Barry!
How are you, and how is your family? I hope you are all doing well. I'm happy to say that my family is doing fine. The weather where I live is perfect, and all of our activities are going well. We also had a lovely weekend recently, which was filled with birthday celebrations. My mom, my dad, and my brother-in-law Jonathan all had birthdays last week, and it was good to spend time with family to celebrate these occasions!
I want you to know that I like to read about what is going on in your country! I like learning about your life, and the place where you live. I use the computer to read news stories about your country so I know some of what is going on there. I thought you might like to hear a report of some things that are going on in my country as well. For example, some areas of my country are experiencing severe drought. In the western part of my country (far from where I live) they have not had enough rain in over a year. Because of this, some rivers and lakes are drying up, and there is not enough rain for some of the crops. Aside from this, we have not had any severe weather or natural disasters. We continue to pray for rain in those areas that are not receiving enough, so the people can grow their crops which are sent to markets all over the country. We are also going to have some elections here soon. I am praying that our leaders will make good decisions and consider the needs of the people of my country. As for a cultural event, next month we are going to celebrate a holiday called Thanksgiving. This is a time when people in my country get together with their families and think about the blessings in their lives. Do you have any holidays coming up in your country? I would love to hear about them!
I hope to get a letter from you soon. I love hearing from you! I am praying for you and your family every day. Do you have any prayer requests for me? I would like to ask you to pray for my country.
Love and hugs,

This week I will be sending letters to all the girls. I have something pretty fun to write about this week. On Saturday, I went to a special event in my city called the Jack-o-Lantern Spectacular. Some really amazing carved pumpkins were set up in one of Louisville's many parks, and once it got dark, ticket holders were allowed onto the trail to view the pumpkins. There were no lights aside from the ones inside the pumpkins. We were surrounded by them- on one side, there were traditional jack-o-lanterns with faces or simple animals. On the other side, intricately carved works of art. I think that it's possible to relay some aspects of Halloween to our kids without breaching into the uncomfortable areas of consumerism (begging for candy) and the occult (pretty much all of the rest of it. Pumpkins are grown in many Compassion countries, so our kids probably have a familiarity with this seasonal gourd. Here's how I'm going to explain Halloween to my kids when I write about it:

In America, we have a cultural celebration at the end of October. People celebrate it in different ways- though some families do not celebrate it at all. Little children sometimes dress up in costumes, and they may attend parties or special events at schools and churches. My church will have a party for the kids and will hand out candy and have fun games to play. One interesting thing that happens this time of year is that people decorate pumpkins. Have you seen a pumpkin before? They are a gourd which is usually orange (sometimes white) and they have a very thick skin. Sometimes people paint their pumpkins, but most pumpkins are decorated by carving. The top is cut off, and the insides are scooped out. Then, people can carve faces or other designs into the pumpkin, and place a little candle inside.
Recently, my city had a fun event. Artists carved thousands of pumpkins with beautiful and interesting designs. Some of the pumpkins looked like animals and dinosaurs, some showed scenes from history, and others were carved to look like people, such as my country's presidents. The pumpkins were placed along a trail in a park, surrounded by trees and woods. When the sun went down, we went to the trail and walked around, looking at the pumpkins. It took over an hour to see them all! They were really amazing, and fun to look at. I am attaching some pictures of pumpkins for you to see!

I hope the kids like the pictures I am sending. I'm going to post some of  them here, because they were just too awesome not to share. : )

Wednesday, October 22, 2014

Compassion at the Library

A few months ago, I came up with what I think is a pretty neat idea. There is going to be a new page on my blog called "Compassion at the Library." As pretty much everyone knows, I work at a public library, and I love reading. Whenever I get a sponsor child from a new-to-me country, I order every book on that country from my library system, and just devour them. I love learning about my kids' countries, and I also really enjoy reading children's books in particular.

As many of my readers have small children, and some even home-school, I thought I would compile a list of children's books (or books for families) that feature the countries where Compassion works. I also may add a section for general books on poverty and global awareness as well. I had hoped to post the list in a single blog entry, and have it finished by now, but it is taking a looooong time. I have been absolutely swamped with books over the past six weeks or so. I had planned on limiting the list to a few books per country, but that's no fun. So the list is going to be pretty big, and doesn't cover every country yet. From now on, there will be a tab at the top of my blog that says "Compassion at the Library." It will be updated whenever I read a new (good) book that would fit well in the list, so check back every once in a while and see if there's anything new on there!

I hope that you folks with kids (or who are like me and don't have kids but think they're fun and enjoy doing the things that they do) find the new page interesting and helpful! And if you have any recommendations to make, please feel free to let me know in the comments!

Monday, October 20, 2014

Sweet Greetings from Brazil, Tanzania and India

Happy Mail Call Monday! Letters have been kind of slow lately, so I'm really happy to have something to share this week!

This week we received three letters! The first one came from Patricia in Brazil. 

As I've said before, I imagine that Patricia is a little social butterfly who cares about letters but may not feel the need to sit still long enough to write a long one! : ) Her letters are always friendly and cheerful, but I hope some day that she sends a few that have a little more info in them about her life and her feelings. In this letter, Patricia mentioned that she was glad I recently had a birthday, and wished me "many happinesses!" She mentioned my recent requests as to how I should pray for her, and she asked that I pray for her family. She also said that many foreign language classes are offered at the project, including English, French, and Russian! I was pretty surprised by that one! I think Patricia's project has a little more access to technology, being in a big city, and it's neat how many educational opportunities that opens up for her! As always, she signed her letter "Kisses! Patricia."

The next letter came from Elisha in Tanzania !

Elisha's letter was about his typical week. He says that he gets up at 6 in the morning and makes his bed. He goes to school Monday through Friday, and goes to the project on Saturdays. In the afternoons he plays football with his friends, and in the evenings he eats ugali with fish! He also says he goes to bed at 7 in the evening, which I have a hard time believing based on the sheer amount of energy contained in this little boy. : ) Elisha says that his favorite day of the week is Wednesday, because he gets to go home early! He also shared that "shikamoo" is a greeting from "a junior to a senior" and that I should say "marahaba" in response. Said actually told me this in his first letter three long years ago! He was so excited when I wrote "marahaba" in my response letter, so I was sure to do the same for Elisha! 

Lastly, we heard from Jayid in India!

Jayid said thanks for the goodies we have been able to send him lately, including activity books and stickers! He said that it is the rainy season where he lives, and they have been having monsoons in India. Jayid also responded to my recent push for prayer requests, and asked that we pray for his dad, who has TB. He said that his dad has not been able to work as well as he normally does because he is frequently sick. I will definitely be praying for his dad! If my information is correct, his dad's name is Sikkander (that was what was written in his first letter, long ago!) Jayid also talked about food in his letter, saying that he likes eating biryani and "sweets potatoes!" And as a side note, that little headshot up there is a new picture of our boy! I realized the copy I had saved in my computer was not the same dimensions as the others I've been posting, so I looked it up on a special webpage- I almost didn't catch that it was a new one since he's wearing the same shirt! But this photo has a different background and a hint of a smile- and in the full photo he's wearing new pants and shoes, and looks to be about two feet taller! : )

Monday, October 13, 2014

Sweet Greetings from Burkina Faso and Ghana

It's Mail Call Monday- pointless holiday edition!

There's no mail today, so I'm hoping to get some letters tomorrow! In the meantime, this past week we received two letters!
Our first letter was from  Reine in Burkina Faso. 

This was our second letter from Reine, which is pretty great since we just got her this summer! She shared that she loved the gifts that I've been sending to her and didn't have the words to say thanks. I'm so happy she's liked the little extras! I'm thinking that she hasn't received much in the past from her sponsors, and I'm glad that I can send her these little surprises. She mentioned again that she was on summer holidays and was spending the free time helping her family. Just like with her previous letter, she signed off with a "see you soon!" She also asked that we pray for her country, and asked what I am doing to prepare for my children's future! In my reply letter, I turned that around and told her some of the things we are doing to prepare for our future children. : )

Next, we had a big surprise- a first letter from Angelina in Ghana!

We got Angelina one month prior to receiving this letter, down to the day! It was an introductory letter, so it was nice to learn more about her in that way! Angelina lives with her auntie and uncle and two cousins- I do know that her mother is deceased, but I was under the impression from her profile that she was living with her dad and some other family members. I hope nothing happened to her dad, and that maybe he is just gone looking for work. She likes the colors purple and green, she likes to eat jollof (a rice dish from West Africa), and her favorite pet is a cat! She also likes playing with dolls. She asked what my favorite food is, and says that she is praying for us and she would like us to pray that God will bless her family. I'm hoping to find out in her next letter what she likes to be called- Compassion had her preferred name as a  nickname, and her "first name", which actually comes second in Ghana, is Angelina. And then in the letter, her helper at the project wrote "Angela." I'm going to work on the assumption that she goes by Angelina most of the time for now, and that maybe Angela is just a little more formal (like how Brenda also goes by Brendita- Angelina could mean "little Angela" for her family!) No matter what she likes to be called, I was very excited and surprised to get a letter from her! 

I hope a few more first letters are on their way soon. We are going on five months of writing to a few of our kids, plus we should hopefully get a letter from Sandier soon about the gifts that Kim H. took to Honduras for him. Also this week we got two new correspondence kids- I'm corresponding with Amisha in India (who was recently sponsored by a family member) and now we have Marc in Haiti! It's been a pretty exciting week for us! 

Thursday, October 9, 2014

Invisible Boy

My brother is a magnet for weird, dangerous, painful happenings.

He got really badly sunburned when he was a baby- I mean really badly.
As a toddler, he got into a tube of Icy Hot...and tried to eat some of it. It did not go well.
In preschool, he got very sick with some strain of hand, foot and mouth disease (the vaguest-sounding disease ever) and honestly could have died. I had to go stay at my grandma's and my brother was hooked up to an IV and stayed connected to it as he slept on my mattress on the living room floor with my mom.
He got his hand smashed in a car door.
He knocked the top of a tripod off its stand and cracked his nose.
He dropped a dagger one time and in a rush of adrenaline tried to catch it- and caught the wrong end.
He fell off the monkey bars on field day and broke his wrist- and the teacher didn't believe him that it was really hurt (she comes in my library sometimes and I still glare at her.)

Toward the end of high school, he started becoming less active. He used to do tae kwon do and run around with his friends all the time, but he started hurting. It got pretty bad before he told anyone about it. I don't know why he didn't think it was important enough to share, but after a while, he told my parents and he went to the doctor. The first suspect was scoliosis. It runs in my family. My mom had it when she was younger, and saw a chiropractor. My aunt (on my dad's side) had it and had to wear a brace. I had it and had to have surgery. So my brother went to see my spinal surgeon....who said that he didn't really have scoliosis. Maybe a touch of arthritis, though. But who doesn't have a touch of arthritis? So that was the next suspect. Arthritis also runs in my family. My dad had to have both his hips replaced by the time he hit his 40s. We are a very pained people, I guess you would say. So my brother went to see another doctor, because arthritis meds weren't really helping. I don't remember the exact chain of events that led to his eventual diagnosis, because it was around the time I got married and I was out of the house a lot (and then permanently, after the wedding.) But he did get a diagnosis: Ehlers-Danlos Syndrome. Which you have never heard of, I can almost promise. It was mentioned twice on the TV show "House", once as a theory and once as an actual diagnosis, but nothing was ever explained about it. No one understands this disease unless they know someone who have it, or have it themselves- and even then it doesn't really make sense.

Ehlers-Danlos Syndrome, or EDS, is actually a collection of diseases. There are different types of EDS, kind of like how there are different types of diabetes...except there are way more types. Some types are mild and go undetected for decades, if not a person's entire lifetime. Some types are fatal and result in a very short life expectancy. Some types are in between. Some manifest mostly in physical pain, and some have sneaky complications like heart problems. Basically, EDS is a collagen defect- the collagen in your body doesn't work like it should. It's too stretchy and unreliable. The bad thing is, collagen is everywhere. Here are some examples:

  • Your joints have collagen. EDS patients are "bendy." Some might call it double jointed. It leads to some neat party tricks, but it also sucks- you can dislocate something or "sublux" (pop it partially out of joint) doing everyday things. Like getting up out of bed. Or opening the refrigerator door. EDS is a disease of pain because of this. 
  • Your heart has collagen. EDS patients have to be very suspicious of chest pains, because sometimes, they can have what's called aortic dissection, where one's aorta just rips. It is fatal if it's not caught in time. You know those news stories that pop up now and again, where a middle schooler collapses and dies during a sports game, or a teenager dies of an "undiagnosed heart condition" after having too many energy drinks? Almost all of the time, those people are found to have a type of EDS at their autopsies. Mitral valve prolapse and arrhythmia are other complications of EDS. I'm sorry if this sounds scary, but it's truth. EDS needs to be taken seriously. 
  • Your skin has collagen. Some EDS patients have super stretchy skin, which can tear easily or bruise like crazy. There are many stories of parents suspected of child abuse because these wounds appear on their kids. Parents of kids with EDS have even temporarily lost custody of their children because well-intentioned doctors or ER personnel don't really know what the disease is. 
  • Your internal organs, like your stomach, esophagus, and intestines all have collagen. EDS patients may be prone to tummy troubles, like IBS and reflux.
  • Ever heard of dysautonomia? It's hard to explain. Basically, the stuff in your autonomic nervous system is wonky. POTS, or postural orthopedic tachycardia syndrome, is a medical condition where a person's heart rate goes crazy when they stand or sit up, causing them to feel faint and sick. POTS is a good example of a type of dysautonomia. And dysautonomia is common in EDS patients. 
  • You know what you don't want to be loose and unreliable? Reproductive organs. Women with EDS have a high rate of miscarriages, if they can even conceive in the first place. The blood vessel walls in the uterus can also be prone to rupturing, which may lead to serious illness or death for the mom. 
In short, EDS is rough. And permanent. And really frustrating. It's one of those "invisible illnesses" for one thing. Some people really don't believe you're sick unless they can see it. And they think all illness is the same. So when someone uses a motorized cart at the grocery store, and they stand up a bit to get something off a top shelf, others might make fun of them because of the assumption that they're lazy and they're faking it. But it's entirely possible that that person in the wheelchair has something like EDS, or POTS, which makes walking around the grocery store a near impossibility. People can be incredibly judgmental when it comes to disability. 

This afternoon, I went to see my family's orthopedist because of some problems I've been having with my hip. I've been in a tremendous amount of pain over the past 6 weeks or so. My hip (and other joints) bothers me from time to time, but this was set off by an incident where I stood up from a sofa, and my hip popped partially out of place. We've kind of assumed that there was a good chance that I, like my brother, may have a type of EDS because of the sheer number of symptoms I have (too many to list here.) I just hadn't really had a doctor confirm it. So I was nervous about going to the doctor today. I do not want what my brother has, because he is often miserable. He is in so much pain and has so many problems. Good days are pretty few and far between. He can't work, he can't drive, and he had to stop going to school. It's hard. 

Anyway, the orthopedist today said that yeah, I basically do have EDS. The symptoms are pretty hard to ignore. Of course, the only true confirmation of this diagnosis is genetic testing, which I guess I will be scheduling soon. The testing will help determine what type of EDS it is, too, which will in turn help me know what to expect and what to look out for. In the meantime, I need to set up an appointment with my regular doctor to discuss pain management, since surgery and therapy and all that can't really fix my hip. And I have an appointment at the hospital two weeks for now to get some crazy shot in my hip to help relieve the pain. I was told that they have to do it "with fluoroscopy"  to guide the injection to the right place, so that's fun. "Got any plans next week?" "Yeah, I'm getting a shot in my butt." Exciting. point in posting this. I guess mainly to ask for prayer. I'm not devastated or anything like that, because I was kind of expecting this eventually, but I am bothered. And frustrated because my hip hurts. And tylenol and ibuprofen are starting to make me pretty sick. I also wanted to explain something that's a big part of my family's life. Most of the universe does not understand what EDS is. There are some great support organizations and specialists out the United Kingdom. Seriously. There is one clinic that helps EDS patients in Ohio, and a new clinic in Maryland that's run by geneticists who treat EDS patients exclusively. The waiting list for an appointment is freakishly long, though. The one doctor we've encountered in my city who has a decent understanding of it- the ortho guy I saw today- doesn't treat it. There's not a lot of support out there, or awareness, and that can lead to some frustrations for us, too. For example, physical therapy will not fix EDS. In some patients, it might provide some pain relief after an injury. But it's not a cure. And we know people who think that it is. We know people who get upset when my brother has to use a walker or a wheelchair, which are necessities for his mobility sometimes....I think they're mainly upset that a young man who was once pretty healthy could have a debilitating illness. But can you imagine how hurtful it is to hear a loved one say "you don't need that?" Or to get kind of judgmental about your doctor prescribed pain management? And then you have the people who judge you for not being able to work. Or thinking that if they had this disease, they'd just "get through it" and do what needs to be done. The people who don't understand that not just paralyzed individuals need to use wheelchairs. Or not just people without wheelchairs might need to use the handi-capable stall in a public restroom. EDS is hard. Invisible illness is hard. Pain is hard. My family is pretty strongly affected by all of this. I'd love to have your prayers for my brother, because I know he's been having a hard week. His whole life has been weird at times and full of these random challenges, like all of the things I listed at the beginning of the post. And I'd appreciate your prayers for me, because pain is keeping me from doing some things I need to do, making life at work and at home rather frustrating and difficult. I'm looking for patience and endurance. And financial provision, too, because chronic illnesses and disabilities can be expensive, especially if they are progressive. 

And that's the end of this impromptu informational session on Ehlers-Danlos Syndrome, a hypermobility disorder. It's good to learn new things, even if those new things are a little depressing. Now that you know more about EDS and invisible illnesses, I hope that you can encourage others to be more compassionate when you see things like, say, the internet meme of the woman sitting in a chair in a fast food line. Maybe she isn't lazy at all. Maybe she's in pain, or she has heart flutters and needed to sit down. After all, a wise person once said "be kind, for everyone you meet is fighting a hard battle."

There's a popular saying among med students and doctors: when you hear hoofbeats, think horses, not zebras. It means that the most common diagnosis is probably the right one. Since EDS is kind of rare, it would be a "zebra" among horses. EDS patients around the world have adopted the zebra as their unofficial mascot because of this. 

Monday, October 6, 2014

Sweet Greetings from Honduras

Happy Mail Call Monday!

This week we just received one letter, but it was an exciting one- our first letter from Katherine in Honduras!

Katherine's profile says she goes by her middle name, Anahi, which is what I've been calling her- but her mom wrote the letter, and it says Katherine. Mom knows best! Katherine's letter was a form letter like Sandier's most recent one. It was about her medical check up. She weighs 35 lbs and is 102 centimeters tall. She is healthy and she received vitamins and dewormer at her medical check up. Her mom, Celina, wrote the letter. She said that Katherine wishes us lots of blessings because "God put you in our way to bless us through you." She said Katherine knows how to read and write, and she does really well in school. The letter was written in August, but Katherine was still excited because she turned 6 in July! She said that they are always praying for us, and she would like us to pray for their family, that God would continue opening doors. She signed it "hugs and kisses for your family!" I just love getting first letters from my kids- it really helps me feel connected to them. We've had Katherine for almost five months, so it was good to hear from her! I also like the fact that her mom wrote the letter- I hope that she is able to continue doing this, so I might be able to encourage her and connect with her as well!