Energy!

 

Chronic illness cat, you speak the truth.

Gentle hugs,

Chels

FMS – It’s not in your head.

The Harry Potter fangirl in me couldn’t resist this quote.

 

You may have read recently that researchers have discovered what they believe to be the cause of FMS symptoms.

The discovery really is groundbreaking, but what concerns me is the tagline featured in many articles on the subject that fibromyalgia sufferers can rest assured that “it’s not all in their head.”

Unfortunately, we’re not the ones who needed the reassurance. Those of us who have FMS know that it is very real. Sadly, though, many doctors still don’t “believe in” fibro, and will hopefully believe otherwise after reading about the latest research.

I’m very fortunate never to have been told that my symptoms are “all in my head.” (Not by anyone I know, or any medical professional, that is. Trolls on the internet are the extent my experience with that kind of patronizing b.s.) My mom has FMS, and so did my father, much to the astonishment of doctors I spoke to early in my diagnosis and treatment. My family isn’t very large, either, so my support system was small, but two of them already had firsthand knowledge and experience to share with me. That also means less of a chance that a family member would dismiss my symptoms as psychosomatic. I’m very thankful to be surrounded by understanding, empathetic people who, even if they’ve never experienced something similar, want to help make life a little easier for me by helping me with physical tasks, allowing me enough rest, and just being there to listen and encourage me. I know that’s not the case for everyone with an invisible illness.

There’s a little ray of light, though, in this research, that will eventually illuminate the minds of medical professionals, and hopefully lead to better diagnoses, and fewer misdiagnoses. It may even lead to a cure, or at least a consistent form of treatment for those of us who’ve known all along that it’s not just in our heads.

Gentle hugs,

Chels

The history of why I chopped off my hair, even though some people think God doesn’t like it.

Hair is a really big deal. People cut it off and let it grow for so many reasons: vanity, to donate to charity, convenience, comfort, and religion. Some people shave their head to honor God, some people don’t cut their hair to honor God, and some people cover their hair with scarves to honor God. The interesting thing about Christianity is that people do all three of those things to honor God, depending on what they believe.

If you’d like to know, I believe that the scriptures that many people interpret to mean that a woman must not cut her hair actually mean several things. I believe these things based on what I’ve studied about language and history, and what I feel based on thought and prayer. 1) A woman should cover her head with cloth when praying or prophesying to distinguish herself from pagan women (who removed their veils in defiance of men and in worship of Dionysus.) 2) A woman shouldn’t shave her head (as was custom for the women who worshiped Dionysus to do at the time,) as she would be seen as pagan and that would dishonor God. 3) A woman should not rebel against her husband by presenting herself in a masculine way, or rebel against God by not embracing the femininity He gave her (cutting her hair short would be an easy and apparent way to do that.)

That said, I believe that the first two things, like many of the Biblical teachings (such as advising women not to speak in church, which was for their safety, not because God didn’t like it,) were culturally relevant, and used to distinguish people who believed in what we now call the Christian God from those who worshiped anyone or anything else, and were even practical self preservation tools. I believe that they can still be relevant today, based on your culture, your intentions, your relationship with your spouse, and should definitely be obeyed out of respect if you’re visiting a different culture in which they’re the norm. However, the issue of covering my head or cutting my hair is not relevant to me now. My culture no longer associates short hair with paganism, I don’t cut my hair short in defiance of God’s role for me as a woman our out of any kind of rebellious feelings, I considered what my husband thought about short hair before cutting my own (he absolutely loves it, and finds it beautiful and feminine on me,) and (with the exception of when I was young, before I developed a womanly body, and had short hair) I have not yet heard anyone say that I look masculine, or mistake me for a man.

Let me stop here and say that I respect and admire women who do or don’t cut their hair, or who wear veils or other head coverings in honor of their religion and their god, whether they are Christian, Muslim, Hindu, or identify with any other religion. I think Mother Teresa said it well when she said that “a Christian should try to be a good Christian, a Muslim should try to be a good Muslim, a Hindu should try to be a good Hindu.” Much of that comes from our intentions and our own personal relationship with God. If your intention is to rebel against God or your spouse by shaving your head, then it’s not right that you shave your head, at least not until that spirit of rebellion is gone. It’s not my intention to demean anyone who is doing what they believe is right and good.

I have had long hair, and I have loved long hair. When Tom and I got married, my hair was the longest it had been in years. I’ve always been adventurous with my hairstyles, and I wanted to see what it would be like to have long hair as a woman (rather than the long hair I had as a young child.) I thought it would look pretty in our wedding pictures, and Tom wanted to see what it looked like long.

My long hair in all its glory! It was curled here, as I was getting ready for the ceremony, which took quite a bit of length away. Uncurled, my hair reached the middle of my back.

Tom thought my long hair was beautiful, and especially loved that I curled it for the wedding, because my hair is naturally wavy and a little curly. During our engagement, though, I couldn’t help noticing the severe scalp pain I experienced any time I put my hair up, and even when it was down, because my hair was so heavy. Soon, I was diagnosed with fibro, and all those weird pains I had started making sense, including the scalp pain. I quickly learned that low, loose ponytails or a few clips on the side of my head were about as much as I could take, otherwise the pain and headaches were so bad they literally made me cry. I still wanted to grow it out, but I started to seriously think about cutting it after the wedding. About halfway into the growing out process, the thought occurred to me to donate my hair to Locks of Love. They take healthy human hair and created wigs for children who have lost their hair due to illness. My grandmother died a couple of years before I got married from lung cancer, and since we were already doing things in honor of my deceased grandparents at the wedding, I thought donating my hair afterward would be an extra way to honor her and those who had survived the horrors of cancer and cancer treatment, along with honoring my own body by alleviating the pain my hair caused. (Little did we know that my mother would soon go through cancer treatment, and that I would discover precancerous cells of my own.) When I told Tom what I wanted to do and why, he was really supportive. I think he was a little tentative, because he had never seen what my hair looked like any shorter than almost shoulder length (though I’d had a pixie cut in junior high and high school,) but he assured me he thought that I would look beautiful with short hair, and he understood the amount of pain I had been in. I assured him that if he hated it, my hair grows really fast! I just wouldn’t be able to grow it as long as it had been.

The closer it got to cutting my hair, the more excited we both got about donating it. I had to have at least twelve inches to donate, and by the day of our wedding I had enough hair that I would need to cut it to a chin length bob in order to donate the rest. Two days after our wedding, I went down the street, told the stylist what I wanted to do, and they were happy to do it. I started with a really simple straight bob, which I knew from experience wasn’t my favorite haircut, but just in case I wanted to grow it out I knew it would be easy to do from that length and cut. The instant that hair fell from my head, I could tell that the pain I had experienced over the past couple of years wouldn’t be as severe. My head felt so light! It looked like this:

When I came home, Tom’s eyes lit up and he got this huge smile on his face. He wouldn’t stop talking about how much he liked it during the honeymoon, so I told him I’d like to have it styled a little differently (at an angle,) and he said he thought that would look cool. I’ll never forget the series of cuts I got after that, because every time I came home, he would say that he didn’t think it could get any cuter until he saw the next cut! I went from an angled bob, which I kept for quite a while, then an asymmetrical bob inspired by Selma Blair, and then, eventually, I let it grow again. It got nearly to my shoulders, and I was reminded of that terrible pain again. It was difficult to find a way to keep my hair out of my eyes without causing migraines and stabbing scalp pain. So, finally, after a series of more short cuts, I decided to do something I’d been wanting to do for a very long time. When I say that, I mean that I’ve wanted hair like this since I was a young kid, but no one ever had the guts to cut it for me.

I wanted a mohawk.

Yep, I said it. I wanted a mohawk. Now, I have to say that I didn’t want the kind of mohawk you douse in Elmer’s glue and spike to the heavens. They look cool, but that style would look pretty dumb on me. I wanted the kinds of mohawks you see in pictures of Native Americans, or on episodes of “So You Think You Can Dance” when Sonya Tayeh would choreograph routines. I knew that I couldn’t stand the top of my hair to be that long, though, so I started looking up pictures of ‘flophawks,’ and found some cuts that were short enough to suit my fibro needs, but feminine enough that I wouldn’t look like a “SLC Punks” poser. My friend Paige was kind enough to give me my first cut. She was terrified I would hate it, and therefore hate her, but I convinced her that everything would be fine. She cut it a little longer than what I asked for – just in case – and I knew immediately that I would have this haircut, or a version of it, for a very, very long time. Tom came with me to her and her husband’s house for the whole process, and, just as I was getting a little nervous  halfway through the cut, I looked over to see that same look he had on his face when I came home from donating my hair. The fact that he liked it reassured me that I was doing a good thing, and I couldn’t be happier.

This is the most recent picture of me, taken two days ago. I decided to try a poufy mohawk style for our double date that night! (Also, I just bought that awesome pillow from my friend Stephanie of Longoria Studios – isn’t it pretty?!)

Honestly, guys, I feel blessed by this hair. I’ve since cut it a little shorter, and started cutting it myself (it’s a pretty easy haircut to maintain,) and I’ve never felt more free. My head hurts the least it ever has, and I get compliments on my hair every single day I go out in public. I feel beautiful, and my hair has even helped me with some other insecurities I have. Women see my hair and tell me stories of chemotherapy, hair loss, and I’ve even had some say that my hair may just be the inspiration they need to cut theirs. Men see my hair and comment on how classy it looks, and tell me stories about how they’ve lovingly cut their wife’s hair. I can count on one hand the few slightly negative comments I’ve received, but in the end I always try to respond with a smile, because I know that this is not for everyone. It is for me, though, and now it’s even become trendy. I can see myself as an old woman, though, long after this trend has worn off, wearing this haircut proudly and with thanks for all the good it’s done.

Gentle hugs,

Chels

P.S. – This article explains much more eloquently and in depth what I feel about what the Bible says about women and their hair, if you’re interested in doing some research, too. If you have a story you’d like to share about you and your hair, please comment below! I would love to hear your story.

Touch

Touch is so important. Studies have shown that children who don’t receive physical touch develop literal skin hunger, and suffer from psychological effects. While I like my space, I grew up in an affectionate family, and I’m happy to give hugs and hold hands. It’s why I got my massage therapy license – I know how much touch can do to heal wounds people don’t even know they have.

It’s not uncommon for people to cry during a massage treatment, not because of physical pain, but because of the emotional release that can come with physical contact. I truly believe that we’ve created such busy lives for ourselves that we haven’t created time to recognize and honor our own emotions. It was a privilege to be a massage therapist while it lasted. Unfortunately, I was diagnosed with FM during the middle of school, and while I stubbornly finished my internship, took the certification test, and went on to massage professionally for several months, it proved too strenuous for me. (Massage therapy is on the list of the top 10 most physically strenuous professions.)

So, I practice what I’ve learned on myself, my husband, and occasionally my mom. One thing that my mom and I have always practiced is acupressure. My knowledge of the subject isn’t extensive, but I’ve helped more than one friend get rid of a headache using pressure points. If you’d like to try it yourself, here’s an easy to follow chart to try on your left hand:

The general suggestion is to hold the point firmly for 7-10 seconds.

For more info, visit webmd.com.

Massage and acupressure are considered medical treatments, and, as with any other treatment, you should consult your doctor before trying it. If you have arthritis, tumors or cysts in the massage area, cancer, or if you’re pregnant, you may want to avoid massage or acupressure altogether. (Massage has been linked to, but not proven to cause, contractions and early labor in pregnant women.)

Gentle hugs,

Chels

Escaping reality & forming alter egos (in the neverending world of cosplay.)

Reality and I are very close. Too close sometimes. So, to balance things out, I play dress up.

You heard me.

My neice looked at her mom one day last year, after she had gotten dressed and put on her makeup, and said, “Mama, you look fancy like Aunt Chelsea!” That, my friends, is the best compliment I’ve ever received. (That, and that I could be the first female president.) On days when I don’t feel well, even on days that I don’t feel well and don’t even have to go anywhere, I put on something that makes me feel good. Sure, it’s great to learn how to cope, and to work on your mental viewpoint of yourself, yada yada … but let’s be honest. When you think you look good, you feel good, as you should. It especially helps when you get compliments from others, Hottie McHotterson.

When I say that I put on something that makes me feel good, that can be anything from one of my favorite funny t-shirts to pajamas to a dress or skirt to .. yep, you guessed it, a costume. (Or at least part of one.) What says “escape from reality” like dressing up as someone or something else? I used to have this really funny book called “The Bad Girl’s Guide To Life.” One of the suggestions was to spice up your cleaning routine by wearing a tiara. A year or two later, around my birthday, I bought said tiara and wore the heck out of it. I wore it on my birthday, around the house, and, knowing me, probably to the grocery store once or twice. I had decided long before then that if something made me smile, whether someone else thought it was ugly or not, I wore it. Not only did it make me happy, but it made plenty of my friends, and probably quite a few strangers, laugh. You can’t really have enough laughter in the world, right?

When I met my husband, my small amount of comic world knowledge, his larger amount of knowledge, and his older brother’s even bigger amount of knowledge combined like a smaller but equally as cool Captain Planet team to turn my slight fascination into near obsession. Add to that my love for anything in the Whedonverse (Joss Whedon, that is,) and I’m not just a nerd, I’m a bona fide geek, thankyouverymuch!  Then there’s the happiness I get from watching the behind the scenes footage of nearly any movie to see how makeup and costumes were made. I’m pretty much done for.

Then, lo and behold, I discover a world that used to only be occupied my anime characters has now expanded to nearly any sci-fi, comic book, movie, and book character you can think of. Oh dear. All I can say is: look out, cosplay world! Here I, my seemingly useless knowledge, my amateur acting skills, and my awesome craftiness come! It’s a match made in heaven, really. Good old reality is still there, but it’s been downgraded to friend status. This world of imagination, creativity and play is my real love.

If you love dressing up for cosplay, or if you just want to see a bunch of really cool costumes, check out DeviantArt. (I’m “loveandeyeballs.”) You can search the submissions, or submit a cosplay picture or two to their latest fundraiser for child burn victims!

Gentle hugs,

Chels

On a scale from one to ten … a rant.

“What’s your pain level on a scale from one to ten?”

Ok, I must confess that this question really irks me.

If I’m feeling exceptionally cheeky, I reply,

“Which pain?”

or

“Right now, or ten minutes from now?”

Honestly, though, it’s so hard to rate your pain when you have several different kinds of pain going on at any given moment, which can change in the small amount of time you have with your doctor. I usually go with four. Four sounds good.

Then there’s the slightly more descriptive, but badly drawn smiley/frowny face chart:

So, what do faces 1, 3, 5, 7, and 9 look like, exactly? Those poor guys are in pain, too, ya know. And what if my “6” face looks more like a “4” face? I always want to try to make one of the faces illustrated and have the doctor guess the corresponding number.

I get it, I really do. Doctors need for you to rate your pain so that they can try to understand it and hopefully treat it. Some days, though, it would be easier if they just asked me to describe it instead. I think I could illustrate my pain better than a number or a set of scribbly, one dimensional features.

You know, on a rough day, it would go something like this:

“The pain in my hips feels deeply sore and stiff, making it hard to stand up and sit down, while the pain caused by the knot in my neck and shoulder (which hurts when you poke it or if I take a deep breath or turn my head) is a burning nerve pain, radiating down my arm. The pain in my toe feels like someone is ramming a needle into the bone again and again at random intervals, and my “all-over” pain makes me feel like I’ve had a nasty flu for a couple of weeks, but no longer have the fever or upper respiratory symptoms. The spasm going on in my eye is distracting me from the migraine that’s coming on, but not from the pain in my feet, which is such that if you touch them I can’t be responsible for any reflexive kicking that may happen in your general direction. Also, my skin is so sensitive that my clothing rubbing against me makes me nauseous, while the new pain caused by the blood pressure cuff your nurse just used is throbbing up and down that arm, thanks to the fact that my arms are so skinny that the cuff has to acheive maximum squeeze. Twice. Then there’s the stomach cramps, which happen without warning, so if I bend over to pick up my purse and don’t come back up for a while, you’ll know why. Oh, and I have white coat anxiety, which is causing all-over muscle tension, along with the freezing temperature of the room, which is causing general stiffness and more muscle tension, which is all causing more “all-over” pain. That about sums it up for right now, doc. ”

Most docs are usually too busy for all that, though. So, I guess I’ll have to work with the numbers and faces I’ve got.

What are your doctor visit pet peeves?

Gentle hugs,

Chels

Websites for a BPD (Bad Pain Day)

I’m right in the middle of a fibro flare, and after a couple of days without anxiety meds, things were starting to get a little nuts. (Thankfully, I was able to get that scrip today, so no anxiety attacks.) Needless to say, I’ve spent the past few days at home, but even with meds, I can’t really go anywhere unless the hubs can drive. So, I thought I’d share some of my favorite places to travel to in the web world on days I’m stuck inside and don’t feel up to doing something more physically productive.

It’s good to have a support system, right? Not just through the bad times, but through the good – everyone needs a cheerleader or two. I know that if you’re home bound, sick in a way that keeps you from interacting with people often, or just don’t have many family members or friends, though, your support group options are minimal. A few years ago, I found a great site, Daily Strength. Just about any illness or issue you can think of has a section on this site, filled with people who understand where you’re coming from. If you have multiple health problems, you can be a part of multiple groups. You can even click on emoticons to let your friends on the site know how you’re feeling that day.

It’s also good to laugh, and one of the sites where I can always get a heaping dose of that medicine is Hello Giggles. The actress Zooey Deschanel (New Girl) and a few friends came up with the site, which is mostly geared toward women, but I think there’s plenty of stuff on there that guys would get a giggle (a manly giggle) out of.

Of course, there’s Pinterest. If you’re new to the site and aren’t sure where to start, you can always follow me and repin to your heart’s content.

If you feel up to getting a little crafty, or at least checking out some painfully crafty ideas, Dollar Store Crafts is where it’s at. If you want to add to your wardrobe, Threadbanger is the place to go.

Like architecture, interior design or decorating? Check out DwellingGawker.

For those who dig indie movie projects, or just enjoy Joseph Gordon Levitt, I recommend hitRECord.

If you’re feeling uninspired, or want to tickle your brain a bit, Ted.com has tons of videos featuring intelligent, creative, innovative, and often funny people.

I follow quite a few blogs, but my most favorite would probably have to be Advanced Style. Even if you’re not into fashion, I know you’ll appreciate this celebration of the greatest generation, and some of the beautiful stories these people have to share.

If you have a website where you like to hang out on a home bound day, please share it in the comments below!

Gentle hugs,

Chels