What I want you to know about living with Fibromyalgia

What I Want You to Know is a series of reader submissions. It is an attempt to allow people to tell their personal stories, in the hopes of bringing greater compassion to the unique issues each of us face. If you would like to submit a story to this series, click here.  Today’s guest post is bJanna Haynes.

In 2007, after a few years of trying to figure out why I was constantly in pain, overwhelmed with fatigue and my joints felt like a 65 year old (I was 26), I was finally handed down a diagnosis of Fibromyalgia (FMS). What? Never heard of it…

I've learned in the years since that not every doctor believes in the existence of FMS. Mainly because there is no scientific test to diagnosis it. You cannot take a blood test, a pee test or an MRI to get a diagnosis. Instead, I went through all those tests to eliminate the possibility of other diseases and disorders and then went through the very unscientific process of identifying more than 11 out of 18 pain points in my body, combined with severe joint pain and overwhelming fatigue and chronic sleep disorders.

It is hard to explain such a diagnosis to friends and family. It is hard for them to take you seriously. I can’t really blame them. When all you have to go on is your feeling, it IS hard to take seriously. I went round and round with myself trying to decide if I was just a really big baby, or if this phantom disease was real. 

The pain is real. The sleep deprivation is real. The joint swelling and soreness is real. The sensitive skin, the IBS, the “fibro fog,” it is all real. And it is all really hard to live with. Over the next five years I experimented with a concoction of drugs to manage my symptoms. Not heal them, manage them. Pain pills and sleeping pills and epileptic pills and and and and…

And I couldn't do it anymore. There were days I could practically feel my liver shutting down and I still wasn't managing my symptoms. In 2012, I pulled off everything. No more anti-inflammatories, no more sleeping pills. No more migraine medication, no more muscle relaxers. No. More. 
I would look on FMS dedicated blogs and websites and social networking groups and read stories of people that couldn't work, couldn't get out of bed, got a divorce because it was a strain on their relationship, and had given up on life because of this disease.

I decided a long time ago that I refuse to be a victim or a casualty of this disease. Though it may slow me down some days, it will not stop me. It has been eight years, a fourth of my life, that I have been living with this disease. I think about it every day. Every day something happens that reminds me of it. I almost never talk about it with my friends or my family. I don’t know what to say. I don’t like sharing news that makes people around me feel sorry for me and helpless. Every day I am tired, I am sore and I wish things were different.

But they aren't. I am living with an auto-immune disease that I will probably have for the rest of my life. But I am living. I can still do everything I want to do, I just need to learn when enough is enough. There are days my brain doesn't function exactly how I want it to, I am so sleep deprived I think I might go insane and moving takes extra effort, but I am thankful. Thankful it is me and not someone else. Thankful that through my suffering, I have compassion for others who suffer. 

What I want you to know is that even in the face of daily pain, there is so much joy, so much hope in living.

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QOES: How many pillows do you sleep with?

Comfort is a big deal when you're trying to get some sleep. The number of pillows you use, the kind of pillows, the arrangement - I am very particular about my pillows. To the point where I sometimes bring my own to a hotel.

I sleep with three pillows. They're really old pillows that have been flattened down but I'm so used to them that I can't bring myself to buy new ones. I sleep with two under my head, one going vertically, one going horizontally. I don't know why. I've done that since I was pregnant. Then I always have to hold a pillow. I've done that since I was in high school. I have to cuddle it while I'm sleeping.

How many pillows do you sleep with?

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My new favorite dress

Every once in a while I will find a dress that's perfectly comfortable and stylish and easy to wear without ironing, and I will order it in several colors and pretty much wear it every day until it falls apart. I just love a single piece of clothing that I don't have to match, that I can throw on and look "put together" with no effort. Last summer it was this dress:

It was from Old Navy and I ordered it in every color, and have worn the black one so much that it is nearly threadbare.

This summer, I discovered this easy cotton dress from The Gap:

It's comfy like a sweatshirt, it has pockets (POCKETS!), and it can be dressed up or down with shoes and jewelry.

I also got a similar version from Old Navy in several colors (and stripes.) This version doesn't have pockets but it is on sale for only $15 right now.

Have any favorite throw-on dresses I need to know about?

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What I want you to know about being an immigrant

What I Want You to Know is a series of reader submissions. It is an attempt to allow people to tell their personal stories, in the hopes of bringing greater compassion to the unique issues each of us face. If you would like to submit a story to this series, click here.  Today’s guest post is by Bronwyn Lea.

This is what I want you to know about being an immigrant.

In the ten years I have lived in the United States, people have often been shocked when I tell them that not only do I not have a green card, but that I couldn’t get one even if I tried.

I would love to be the holder of a green card—that elusive piece of paper which would grant me the right to remain in the US indefinitely—but as it is, I don’t and can’t qualify. There is not a single category under which I can legally apply for permanent residence.

This is shocking to many, perhaps because I defy some of the stereotypes about immigrants and immigration laws. After all, I am English-speaking and hold two graduate degrees. I am white, I am a committed member of my church, and I have three children who are natural-born American citizens. I volunteer on the PTA, I do community service.

I have both the skills and the desire to work, but when people want to pay me for writing or speaking, I have to decline. My current visa status allows me to volunteer, but not to earn any income. (This strikes me as a pity, because I would so gladly pay taxes on any income I could earn. The perks of living in a country like the US are well worth the taxes, if you ask me.)

This is what I want you to know about immigration: being English-speaking, privileged, white, skilled, educated, hard-working, legally above-board, and socially respectable are not enough to apply for residence in the US.

As it turns out, there are very few categories under which one can apply for permanent residence, and unless your employer is sponsoring you or you are marrying in, you have to be a bit of an über-mensch (as in, a scholar of international standing, a Pulitzer prize winner, an Olympic athlete, to name some of the examples listed on the website) to qualify.

I am none of these things.

But, I have hitched my marital wagon to another immigrant who holds a PhD in Engineering from a well-respected US university and works in research that affects the spending of millions of tax dollars. Our immigration attorneys tell us they are “hopeful” that his application will be successful. No guarantees. But all our eggs are in that one basket, and if he gets a green card, I—his loving wife and official maker of the sandwiches—can have one, too.

Until the day we have green cards, though, I live under the constant threat that something will happen: funding will be cut and my husband will lose his job/ he will get hit by a driver who is texting/ he will have a heart attack – and I would instantly lose my status as a legal alien in the US. I would have no grounds to apply to stay on my own merit. I would have to leave the country immediately, without time to pack up our house or bury my loved ones, and I would have to pull my American children from their schools and therapies and take them back to a country where they would then become immigrant kids.

Until the day we have green cards, I live under the constant threat of being “randomly” pulled over for hours of questioning in arrivals halls at airports (Not being paranoid. This has happened.) I live with the fear that an official will make a notation on one of our pieces of paper which we don’t understand or don’t notice, but which jeopardizes the legality of our stay here and requires us to leave the country to fix it (Not being paranoid. This has happened, too). We have been finger printed, retina scanned, swabbed and searched; submitted documents detailing every place we have ever worked and studied, every address of every member of our families worldwide. (This has happened. Who's paranoid?)

We have spent hundreds of hours and thousands of dollars trying to stay legal and keep our paperwork current – but still, as immigrants we remain aware that something unforeseen and uncontrollable could happen to our visa status, and we would be vulnerable. Fleeing. Homeless.

I am a legal, documented, and in-every-way-welcomed-by-this-community immigrant, and yet I want you to know that being an immigrant still means I live with the fear that our paperwork is a house of cards, just waiting to come tumbling down. I am afraid of losing my home. I am afraid of being separated from my children. I am afraid that we will have spent ten years trying to build a life here, and still we will lose everything.

To be an immigrant is to be vulnerable. And if I, as a legal immigrant, feel vulnerable – how much more so are those who have a black mark against their record that they feel powerless to erase?

To be an immigrant is to fear. And if I, as a legal immigrant, feel scared – how much more so are those who would not just have to leave, but who would be punished?

To be an immigrant is to risk being unexpectedly wrenched from your family. And if I, as a legal immigrant, fear this – how much more do others?

I’m not justifying illegal immigration. We have done everything we can to stay and be legal in our efforts, and we would do everything we can to encourage and others to be documented, rather than undocumented, workers.

But I do want you to know that being allowed to stay in this beautiful land of opportunity is far tougher and more complicated than you might think. The laws which protect the US’s borders are the same laws which apply to our family. Even though we don’t “look” like immigrants, we are.

When people talk with us about immigration and hear our story, sometimes they say, “Oh, we’re not talking about you… we’re talking about all those who came here illegally.” They say, “They shouldn’t be rewarded for their crimes with citizenship.” They say, “If they want to move to the US, they should do it legally and just get in line.”

What I want you to know is that THERE IS NO LINE. Immigration is not like Disneyland, where if you pay enough money and queue patiently for long enough, anyone can ride Space Mountain. There is not a single line that I can stand in on my own merit. Even with language and education and money and privilege aplenty, and even though I don’t come from suspicious countries like India or China or Mexico, there is no line for me. So, I’m holding my husband’s hand while he stands in that elusive, exclusive line; and we’re hoping for the best.

In the mean while, I’m telling my story because, unlike so many others who know the vulnerability and fear of living as an immigrant, my speaking out doesn’t put my status in the US at risk. I am one of a smaller group who have experienced just how narrow and broken the immigration laws can be, but who can speak about it without fear of being discovered and deported.

I want you to know what it’s like to be an immigrant because perhaps you, like so many of the wonderful, thoughtful people we have come to know in the US, will hear our story and say, “I had no idea,” and “I’m so sorry,” and “Whoa! That’s so much more broken than I realized.”

The immigration system is broken – more than we realized when we first came, too. And so, I want you to know.

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Keeping an eye on your family, even when you aren’t home . . .

This post is sponsored by Butterfleye Camera.

When my kids were small, I had the hardest time finding the right product for remotely supervising them. I wanted something that would allow me to peek in on them in their cribs without opening the door and waking them up. I wanted something that could help me watch to see if they were jumping out of their toddler beds at night once we made that switch. I wanted something that would allow me to watch them playing in the playroom while I was making dinner in the kitchen. 

I tried some video baby monitors, but the camera lens only showed a very small area, and the picture quality was terrible. Not to mention, they were incredibly expensive. I finally settled on a home security system that was meant for watching the front door. It was unsightly and clunky, but it did the job, and gave me a great view of the kids from another room. But I couldn't help thinking it was ridiculous that there wasn't something a little more parent – friendly.

BF-Sleeping-Baby (1)

There is a new product on the market that is ideal for allowing parents to monitor their kids from afar. It's called Butterflye, and it is a small camera that parents can access from their mobile phones. It is completely wireless, and can be used even when you don't have a Wi-Fi connection. The Butterflye camera allows parents to check in when they are out of town, at work, or on a date night. It is a great accountability system for babysitters, knowing that the parents can check in on the kids at any time. It is also great for home use. You can place it next to the crib, or in the playroom, and keep tabs on your kids from another room.


Butterfleye Camera is available to preorder for a limited time on Indiegogo.

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