Dear future partner,
We haven’t met yet, or maybe we have and time wasn’t ready.
We need to talk. Now. Before I fall in love with you, before you fall in love with me.
Because I don’t want my disease to cause you to leave me.
Too often I see sad posts in online support communities for severe disease groups. Like this one:
“My spouse just asked for a divorce after 25 years of marriage. She said she could no longer handle being married to my condition. I work full time, I do chores, I am a great partner and parent. I just can’t hide when I’m having such bad pain. I feel so alone. Can someone share how they got through this? How can I be in another relationship if I know my disease could cause someone to leave?”
These posts wrench my stomach. I cry, “Another one?” And I have two reactions: hope and fear.
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Charis and Dan. The Ankylosing Spondylitis Wonder Twins! Great read.
I don’t always interview rock stars – it’s not really my thing. But this day was different. This was personal.
It was a chilly morning, much too early for my stiff body to roll out of bed. But this was a big day – I would soon be interviewing Dan Reynolds, the lead singer of Imagine Dragons.
“This wouldn’t be happening,” I thought, “if we didn’t share a wicked diagnosis.”
In late 2015, Dan announced during a show that he lives with Ankylosing Spondylitis (AS). A year later, he partnered with Novartis Pharmaceuticals Corporation and the Spondylitis Association of America to launch This AS Life Live!, an interactive talk show for and by patients living with AS.
Before I keep going, I want to express how lonely it can be to trudge through life surviving a disease that people do not know about. I spend substantial time and…
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An always awesome post from Charis Hill about Ankylosing Spondylitis. 😃
And I don’t just mean our bodies.
Recently, during a visit to the pharmacy, I noticed someone wearing the same compression gloves I was wearing.
“Hey, nice gloves!” I held up my hands to show mine.
She responded, “I have Raynaud’s.”
I said, “I have Ankylosing Spondylitis.”
…crickets. I might has well have just ripped off my clothes.
She looked as though I’d spoken another language. For a disease that is oh-so-NOT-rare, it sure feels like it in these instances. Not only is it a difficult pair of words to pronounce, people’s initial thoughts might revolve around names of dinosaurs – Ankylosaurus Spoondywhat?
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Dear Fertile Friends,
To you who have never been personally touched or directly impacted by the burden of infertility, please know that I see you.
I envy the fact that you can conceive so easily, naturally, without all of the expensive and invasive tests and treatments I’ve endured for so many years. What I wouldn’t give to experience the morning sickness, the back aches, the tiredness and expanding waistline that you complain about. To know what it’s like to not only get a + on a home test, but then to actually get to see a tiny little raisin-sized being on a sonogram, to watch its heartbeat flutter on the screen, to watch and feel it grow and thrive inside of me. To feel my husband lovingly kiss my belly because of a growing baby, instead of just to comfort my bloated and bruised belly after the latest rounds of…
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Good post for Spoonies 🙂
I love election day! I was raised on politics watching CNN as soon as I could open my eyes. I knew more about the 1988 election at age 7 than most adults four times my age. Election day is my Olympics. I vote early and I vote often (just kidding about the second part, I’m not an Obama Democrat).
One of my favorite parts of Election Day is the things I hear when I am at the polling location. I get a good laugh out of misinformed and naive people I hear talking to the Election officials and themselves as they are casting their ballot.
Last August during the Primaries was one of my favorites was hearing a woman come in and ask for an “Independent” ballot, and then complaining that none of the major party candidates were available for choosing. The official informed her that if she wants to vote for a Major Party she needs to choose a Republican or Democrat ballot. Something she was not willing to do. Fortunately for me the very next person asked the official where the list of Presidential candidates was on her ballot. “Well, mam, this is not a Presidential Election year.” To which she stated “Well, that is ridiculous” After an elderly woman broke election laws and blatantly, if not accidentally, campaigned for a State Senate candidate in a polling location, I submitted my ballot and left.
Today while voting in the General, there were not as many people being the early hour I was voting, however I did hear the official inform voters at least four times to use the “soft” end of the stylus to sign their name on the iPads that have replaced the classic book of registered voters. I can only imagine the amount of scratch marks made by the hard metal end of the stylus against the glass surface around the signature area.
I really don’t trust using computers for voting purposes, but I also waited three and a half hours to vote in 2004 due to a 98 year old woman and one registration book. So, I get it. That does not change the fact that I handed over the wrong voter registration card belonging to the woman who lived in the house previously and they did not notice I am not a woman, but fortunately I did before I signed. We need to provide ID. I know, not everyone has a driver’s licence, but we need to be required to provide ID. Voting is the right (and blessing) of American citizens. The election committee should be required to make sure that law is always upheld. But that is a story for another time.
I am waiting patiently for the results to roll in and I can not wait for two years from now.
Happy Voting America!
Many Bible readers know the story of Zacchaeus the tax collector climbing a tree to get a better view of Jesus.
If not, here it is:
Jesus entered Jericho and was passing through. A man was there by the name of Zacchaeus; he was a chief tax collector and was wealthy. He wanted to see who Jesus was, but because he was short he could not see over the crowd. So he ran ahead and climbed a sycamore-fig tree to see him, since Jesus was coming that way. When Jesus reached the spot, he looked up and said to him, “Zacchaeus, come down immediately. I must stay at your house today.” So he came down at once and welcomed him gladly.All the people saw this and began to mutter, “He has gone to be the guest of a sinner.” But Zacchaeus stood up and said to the Lord, “Look, Lord! Here and now I give half of my possessions to the poor, and if I have cheated anybody out of anything, I will pay back four times the amount.” Jesus said to him, “Today salvation has come to this house, because this man, too, is a son of Abraham. For the Son of Man came to seek and to save the lost.” (Luke 19:5-10)
Everyone always focuses on the last part of this story. Zacchaeus, the sinner, seeing the error of his ways and giving back to those he had sinned. The people murmuring behind Jesus’ back about staying with a sinner. And a man giving up his sinful life to follow Jesus.
But, in this post, I want to focus on the first part where Zach climbs a tree to see Jesus.
How many of you would climb a tree for Jesus? Many of us, including myself, would barely leave our front porch to see Jesus. Let alone climb a tree. Lets face it, many of us are not as young as we used to be. The thought of climbing makes me hurt all over. But here is this guy that so wants to see Him that he scurries up a tree like a squirrel. We need to start having that kind of squirrel like drive where we would go anywhere and do anything for our Lord and Savior. Forgoing how strange or uncomfortable it may be.
(And, for the record, if Jesus in the flesh really was walking down the street I would charge through that crowd like a linebacker. But you get the point)
Quite simply, if any millionaires or billionaires want to make a large donation to me so I can put it towards making this world a better place. I sure would appreciate it.
Can’t blame a guy for trying.
(Nigerian Princes need not apply)
Do you know what America needs? A good soccer riot. A mass of people out in the street flipping cars and breaking windows because their team won or lost. This is something that needs to define life in America.
Of course, I am speaking tongue in cheek.
I do not ever want to see the people of Pittsburgh trashing their fine steel built city when their Penguins get swept by the Boston Bruins. But I still like the idea.
Overseas, it would seem that fans of sports teams are a little more loyal and driven by their team’s wins and losses. If Manchester United falls to their rival Manchester City, or Liverpool loses to Chelsea their fans go nuts. Whether they go out on the town and start wrecking havoc is not important, just that they actually care.
Americans love their sports teams. Personally when my Ohio State Buckeyes play the rival Michigan Wolverines I am filled with excitement. And when the Buckeyes win, I am very quick to find any Michigan fan and rub it in their face. There are plenty of other fans and their rivalries that cause over the top reactions to the games and I support them.
I just wish that as a country, we would care just a little more.
Not so much about collegiate or professional sports, but sports on the international level. Namely the World Cup, World Baseball Classic, and the Olympics.
I just don’t think we Americans get excited enough for International play. I understand that during the Cold War, we had the Soviets to root against, which lead to some really great sporting events. And that today we really don’t have that kind of rivalry. We currently dislike the likes of North Korea and Iran, but neither one of them are really a challenge on the athletic field.
Maybe we need to come up with a new rivalry. Just call out some random country and throw down the gauntlet. “Hey Argentina! We are coming for you!”
During the last World Baseball Classic my Korean students were losing their minds. It didn’t matter if Korea was playing Japan or England, they were fired up for their team the whole time. Let me ask my American readers. Did you even know the World Baseball Classic even existed? My guess is, no.
We just don’t seem to care. Even on the biggest stage of the Olympics, we aren’t all that excited. Sure, we go nuts for Gabrielle Douglas in Gymnastics and Micheal Phelps on the pool, but other than those sports which get the most coverage, did anyone watch or even care about any other events? Were we on the edge of our seats when the Women’s Water Polo team faced Croatia? Did we stand up to cheer for our six man rowing team? Because I can assure you, the fans of the country we were facing did.
America is an amazing country with a proud history. We have some of the best athletes in the world and the overall lead in Olympic medals, but as a country we take it for granted. I want to see this change in the near future. And when the American pistol shooting team settles for the Silver against South Africa, I want to see a riot!
Remember last summer when we had that drought? That was awesome!
I know, I know. It caused trouble for the farmers, fire fighters and fireworks gypsies. I am not unsympathetic to their plight. But for me, I don’t need it.
I shall make my case.
A. I did not have to mow my lawn but 4 times, and the weeds never stood a chance.
B. Could go walking any time and because of that I was in far better shape.
C. My joints were happy easy breezy. If there is a storm 50 miles away, my knees tell me.
D. I love the heat! Love it! Love it! Maybe its my inherited Vietnamese but I want to bake.
E. No flooded basement. You understand.
F. No corralling my dogs and cats into the basement to take cover
G. No having to report tornadoes from metal radio station with no basement.
The moral of the story. I understand the importance of rain.. but I could live without it.