I'm saying 'Boo!'

So... it has been brought to my attention (multiple times...) that I am a very negligent blogger. Popping on to say 'Boo!' :) I will be working on getting up some posts for the New Year, but for now, rest assured that I am indeed alive and well and will be posting. Finally, I'm saying 'Boo!' to my illness rather than it saying, 'Boo!' to me every morning :)

Love & happy holiday wishes to you all!

Boundaries

The memory of the phone conversation is still fresh, even though it happened some time ago. I wasn't looking forward to it before it started, nor do I have pleasant memories of it afterward. It was one of those conversations where you feel as though you have been elected into playing a game of Truth or Dare, in spite of all protests. Trapped.

Lately, I've been feeling less like a victim and more in control when I find myself in a situation such as the one I describe above. I have a few secret weapons that I carry concealed with me for just these occasions. 

My first secret weapon is the power of saying 'No.' You see, this isn't a game of Truth or Dare, and I'm pretty sure people lie in that game anyway. If someone asks, "Truth: tell me about ________," I can smile and say, "Why do you want to know?" or, "Is that really any of your business?" Another similar secret weapon is tailoring my answer so that the audience I am addressing is satisfied. This removes me from a situation where I will be put on the defensive. 

My most important secret weapon is that of boundaries. You have no idea how helpful these can be! They are similar to saying 'no,' but usually a bit more gentle with less appearance of rudeness ;) The beauty of boundaries is that I can set up a unique set of boundaries based on the circumstances I find myself in or the people I am interacting with. Boundaries are always in flux, but I am always careful to define them. 

What leaves a bitter taste in my mouth is when people ignore my boundaries, hurting me. Usually these people are terrible at enforcing their own boundaries. They have no idea that it is okay to say 'no.' They have no idea what you mean when you say 'no.' (Think puppy....) 

What is tricky is that as a person, you may or may not recognize your own tendencies to violate or respect the boundaries of others unless you ask those around you. For years I knew an older woman who had NO sense of the boundaries of her family, yet had a very clear and active sense of justice when her own boundaries were violated. But she is learning now by life experience that boundaries are important for everyone, not just her. She is improving. And it is beautiful to watch. On the other hand, I feel as though every time I encounter a young woman who has a poorly defined sense of personal boundaries or the boundaries of others, I don't even want to be friends with that person any,ore. It's too risky... too dangerous.

Thoughts on treating all people with honor, dignity, and respect.... Consider your boundaries, and those of the people surrounding you.

(There is a book out right now by Cloud and Townsend called Boundaries. I've only been able to skim it myself, but I have been told that it is good.)

Looking Back

You know how every now and then, you feel like you are watching a movie of your life, rather than living it? How you look at the person you are with and thing, "Is this real, or just a dream?" Maybe I'm the only person who ever has these out-of-mind, out-of-body, life-is-surreal experiences. I'm hoping I'm not, or else I've probably confused and lost all of you by now. :)

I have had a two of those experiences over the past week. One, while spending time with Tina, my fellow mono-buddy at her lovely house in Sylva. We sat in the shade on a hillside, creeping up and back towards the forest behind us as the coolness provided by the shade receded. As we shared our memories and talked about how chronic illness had complicated our lives, I got this distinct feeling that I was there, but I also wasn't. I knew I was talking about my life, and I knew this was the Tina I lived with in North Carolina... but... it almost didn't seem like it was my life. Or that it was my Tina. Maybe it's related to that old adage, "You can never step in the same river twice." Or something very like it.

Last night, I had another one of those experiences I was sharing about at the top. I was at a Bible study group for the first time with four complete strangers. I felt like such an oddball. I haven't met truly new people in such a long time. Almost always when I meet someone, I already have some connection to them. We have a mutual friend, we go to the same school, we read the same authors, something. Here, there was next to nothing. I think part of the reason I felt that way was because I am still trying to figure out who Camille is in light of the three-year-young illness I have. It wasn't a bad or uncomfortable feeling, exactly. It just was. It was a fact. I was new. I was in control of what these people knew about me.

And yet, I chose to tell these complete strangers about my illness. As things happened, it was pretty neat. The study group wasn't actually studying anything last night; it was more of a social time, which was great for me - eating good food, and sharing our favorite books. I brought with my a copy of Polishing God's Monuments. (For my full description of the book and information on where to get your own copy, check out this older post.) After introducing my favorite author P. G. Wodehouse, I began telling them the story of Juli Andrews, whose story has a lot of parallels to my own. In college, she contracted an extremely virulent Epstein-Barr virus infection, and that was the beginning of her long battle with CFS/ME and multiple chemical sensitivities. Juli faced other problems later in her life as well, including surviving ovarian cancer. After sharing the book, I told them that my story was similar. Like Juli, I came down with EBV which just... stuck. I mentioned the term "chronic fatigue syndrome" a few times. And then, it hit. One of the girls asked, "So, what exactly is chronic fatigue syndrome?"

My mind went blank... numb. What is chronic fatigue syndrome? What is this monster that has dominated my life? What really is it? That's the million dollar question, right? Because no one really knows. No one knows where it came from or why it is so radically different from case to case. But we know one thing: It is Real. Time froze as all of the last three years have came flooding back in a wash of emotion. Chronic fatigue syndrome? It's just plain hard.

I did give a medically valid explanation, quickly stating that "chronic fatigue syndrome is NOT just being tired all the time." I paraphrased the ICC's journal article and explained how CFS is a multi-systemic neurological disorder that effects the respiratory system, the immune system, the CNS, and the mind. I explained different theories, the similarities of CFS to other more well-known illnesses like Lyme's disease and auto-immune disorders.

But I still couldn't tell them... really tell them... what it was like. They know it screwed up my life plans, but do they really know? Does anyone, other than fellow sufferers? I told them about CFS, but I didn't tell them about food allergies, candida, chronic sinus infections, insomnia. I didn't tell them about the difficulty of holding down a job, maintaining friendships, keeping up with the world and all its pain, or the high divorce and suicide rates of CFS patients... or even the more minor issues like how hard it is to get out of bed and feed yourself. I didn't tell them about brain fog, chronic pain, doctors who don't understand, the expense of treatment, or specialists. I couldn't. How could I?

Chronic fatigue syndrome... It's hard. Just plain hard.

Rumors & Heartbreak

And that's how rumors get started. -- Andy Palmer

Dear Readers,

Rumors are a tricky business. They occasionally start as a bold, blunt truth shared in a passionate moment and recirculated outside of the original audience, but more often than not, they begin as an outright lie engineered to cause harm. Or sometimes, it can be a mix of both. A grain of truth is mixed with a generous portion of untruth, and the purpose might not be specific harm to an individual, but rather as a means of self-promotion for someone desiring to be viewed as a source of information. I write all this because recently I have been learning some of these things by first-hand experience. There has been a particular rumor circulated about me, and it is that I have a broken heart. In the remainder of this post, I want to address this rumor head-on. The fact is... I do have a broken heart.

I have a heart that is broken by the brokenness, pain, and sin in this world. My heart is broken by lies, deceit, slander, and rumors. But it is most deeply broken, battered, and bruised by believers whose deeds do not align with their confession. It is broken when those lying, broken, slanderous, sinful people are in the church. The rumor is true: my heart is broken. Not by one person (although one person did the bulk of the damage). It was broken, is broken, has been broken by the church.

Not The Church as in The Universal Body of Believers in Jesus Christ Everywhere. Dare I even say it, my heart has been broken by people in the church that I attend. Not everyone there has inflicted this wound. There are a few people there who genuinely love me and whom I love as well. But there are a number of people there who... well... don't seem to care. They are gossips. While I wouldn't walk up to any single one of them and say, "Oooooooh, so it's you who all those verses were written to about gossiping!" (although I would love to, just to see the looks on their faces), I know who they are. Moreover, they know who they are. I doubt if any of them will see this blog post, or if they will even care.

But just in case they do, I want to let them know: you really hurt me. I am not titanium. I am made of a precious, soft, malleable metal that we like to call gold. But, again, just in case, I also want them to know something else: it doesn't matter. I mean, it does. It matters to God that I have been lied about. But it really doesn't matter to me what has been said to others. Because I am bigger than that. I am stronger. I have been made stronger. I'm not petty enough to start any rumors about them, but I will speak out with the truth.

Thankfully my heart doesn't stay broken, hurt, confused, or angry, and I will not allow it to become bitter. The world is too beautiful for dark thoughts. It is bright, cheerful, happy, lovely, loving, loveable, and real.

So I will laugh, dance, sing, and (when my lungs and legs allow it), run. I will spend hours lying in the sun, work hard at my wonderful job, bake cookies for my best friend's graduation party, and squeal over wedding plans. I will take pleasure in reading novels, stamping cards, cooking gourmet meals, celebrating birthdays and accomplishments, taking long walks, and encouraging friends in person or while talking on the phone. I won't allow lies, deception, and slander to keep me from the beautiful sunset, the green of spring, the blessing of growth and life, or any other natural enjoyment.

Church, you really make me cry sometimes. But only because you're not perfect. Only because you're not pure. Church is supposed to be a piece of heaven on earth, but let's all admit it; it's not, and we know it. We're still humans in the process of sanctification. And heaven's going to be a whole lot better. There, there will be no tale-bearers, no liars, no gossips. There will only be Lovers and Our Love. And the rumors of yesterday won't matter Then, so I won't allow them to dampen my enjoyment of today.

Church, you make me cringe in fear. You make me want to hide. You make me doubt the goodness of the world at times. But not today - and not right now. Because I know that it isn't really The Church's fault. It is, because The Church and the church have done some pretty nasty, terrible, wicked, sinful things. But not because you were The Church or the church - because it is in the darker side if your nature. So now I appeal to the other side of that nature - the redeemed part. The whole part. The loving part. Do the right thing. Pursue unity. Be love. It's love or die, isn't it?

And that's all I have to say about that.

Whatever is healing,
Nella Camille

HOW to Ask

My friend over at LymeLight recently wrote two fantastic posts on what to say or NOT say to a person battling a chronic illness. I really liked her suggestions. They were practical, down-to-earth, and reasonable. One of the most common questions to not ask is something like "What are your symptoms?" Sometimes even "How are you?" can be a very overwhelming question.

My mother and other question-driven, interrogative-loving people like her often struggle with what to say and what not to say (or should I say, what to ask, and what not to ask?). But there's a simple solution out there. It's a preface - a disclaimer - a means to healthier communication. 

In this post, I want to address not only what to say to a person who is facing chronic illness, but how to say it. Or, more precisely, how to ask for information. Often questions and statements themselves aren't problematic; rather it is the manner in which questions are asked that is stressful, discouraging, or unhelpful.

So. What if people asked some of those questions not to ask, but prefaced them by saying something like this...?

"Are you up to telling me how you're feeling today?"

"Would you like to talk about some of your symptoms right now?"

"Is now a good time to ask you questions about Lyme? If it isn't, can you call me when you're up to talking about it?"

This approach to question asking and information seeking is sooooo incredibly helpful for those dealing with a chronic illness. Why?

Because asking, "Are you up for this...?" give me the freedom and option to say "No." 

I'm beginning to realise that these two aspects of communication (one, asking permission, and two, the ability to say yes or no) are absolutely fundamental, but sadly overlooked more often than not. 

Another important facet to communication is realising that every individual is different. For instance, #2 on Warrior's post of things to say is "How can I pray for you?" For me, this was one of the most overwhelming questions to ever answer during the worst part of my illness. In fact, the only more stressful question was probably "How are you doing spiritually?" That was one reason I created this blog. I needed a place where I could answer too-stressful questions like that in one place for everyone to read. 

To this day, if you ask me a question like that, I might him-an-haw and beat around the bush, simply because I'm not up for answering. Don't take this as a personal thing. If or when I become comfortable, I may choose to confide in you. But if I don't, understand that it has nothing to do with you and everything to do with me. I need boundaries in my communication with others for my own personal protection. And one great, easy way for me to set boundaries is to say, "No." And one great way for you to help me out in protecting my still-limited energy resources is to ask, "Is this okay...?" or "May I ask....?"

Just some thoughts, from me to you. :)

~Nella

The Things I Remember... And the Things I Forget

It really is funny the things our brains choose to remember. I was talking to some friends last Friday evening, and one of my best friends was talking about when she first came to our church. "It was an Easter Sunday," I remembered. "You were wearing a green sweater." This kind of memory wouldn't seem all that incredible... except for the fact that I can't seem to remember silly, mundane, day-to-day things like if I've taken my meds yet or not.

So that I'm not laughing alone, I thought I could share some of these moments with you.

Can you tell what doesn't belong in the knife crock?
(Hint: It's pretty small, and it's orange.)

I know this is small, so it's hard to tell...
but I didn't clip my pinkie nail.
Happens. ALL. The. Time. !!!!!

And (I don't have a picture for this one, but...) I forget to order supplements I need when I place my ginormous Vitacost orders. #headdesk. Good thing we have The Vitamin Shoppe and Wegmans!

In other news, this is my 100th post on Peek-a-Boo! Yay! :) And it's the first day of Spring! Double, triple, quadruple yay! Now, for it to get warm. =D

And another 'chronic' is added to the list...!

Hello, you faithful handful of readers. :)

It's been a while since I've blogged, I know. Between candida cooking, starting work at Jackson Plumbing at the end of February and the same day coming down with a second bad cold of this winter, I've had my hands full. I had a phone appointment with Dr. Conley last week and he thinks these colds are really flares of a chronic sinus infection. That makes sense to me. Trouble is, I've never had a sinus infection before, so I was clueless on how to treat it. I started out treating for a cold: olive leaf extract, vitamin c, zinc, oil of oregano, and various herbal teas. But now I'm starting to get into the down-and-dirty let's-blow-this-baby-out-of-my-mucosis-membrane phase.

So the question is, how does one naturally treat a chronic sinus infection? Antibiotics are out of the question for me. My gut has enough issues.... Up to this point I've been trying to work with it by doing some pressure point/manipulation a to attempt to get the sinuses to drain. These seem to work well, especially in the morning. I wake up stuffy, do some of these, and can usually tell a difference within several minutes.

Today the fatigue struck along with the sinus pressure, so I was unable to do those. But I found out about this really cool contraption called a neti pot. It's a little tea pot sort of pitcher that you use for nasal rinsing. Unfortunately, I don't have one -_- I tried to improvise one this afternoon, but it didn't work out so great. But something similar worked. I read a blog about a young woman who naturally treated her chronic sinus infection. She was also dealing with candida (which, incidentally, causes sinus infections. Dur....). She visited a naturopathic doctor who soaked cotton balls in essential oils and stuffed them up her nose. I tried this with a few drops of peppermint and lavender. It burns like all get out, but if you can distract yourself for 10-15 minutes and leave it in there for that long, it does seem to help. I am contemplating doing this with oil of oregano tomorrow as well.

In other news, I am considering a completely grain free diet starting soonish. I've been having some not-great digestion even with the candida diet, so we'll have to see what I can do about that. More supplements are on their way from Vitacost, which will hopefully assist in this adventure. :)

Thanks for reading, and best of luck on your journey towards healing.

Camille

P.S. written on my mini; kindly pardon any typos or auto-correct non-corrects ;)

Secrets: Healthy Hair

A few weeks ago I was out running errands with my dad. One stop was the library to drop off a book of Stefan's and pick up one for me. I was feeling fairly fizzy that day. The sun was shining, it wasn't too cold, and I actually felt healthy from top to bottom. As I checked out my book, the librarian handed it to me and said, "Wow! You have really beautiful, healthy hair!" A big grin split open my face. It wasn't the first time I've heard those words recently. It's a fact; my hair has been getting healthier as I do. "Thank you!" I returned brightly, and left the library, truly feeling beautiful and healthy.

Truth is...

...my hair hasn't always been healthy. I've been growing it out for what seems like years and finally it's obliging by actually seeming longer than it's been when I started. When I first got sick, the shampoo I was using really started to bother my hair. It was a more natural brand that what I'd been using, but it left me with a ton of dandruff and actually felt as though it was burning my scalp. I literally remember scratching my head and being able to see white come down on my clothes or the floor, like a little mini snowstorm. I quit that product and tried another one. Four or five shampoos later, I was still having the same problem. It seemed to get better after making the switch from daily to every-other day washings, but the problem persisted.

The vicious cycle

At some point I learned about how shampoo and conditioner work. Shampoo works as a detergent, stripping your hair of its natural oils. Then conditioner revitalizes the oils with synthetic ones. Shampooing has to be done every day, or else we complain of oily hair. Really, this is just the body's attempt to over compensate for the fact that you are stripping its natural oils on a regular basis. So you're into a vicious cycle.

My journey from 'Poo to No 'Poo

My first attempt to stop using conventional shampoo (or "no 'poo!!" as it is known in the natural community) was to try conditioner-only washing. Instead of being dry and flaky my scalp became super-duper oily. It looked unhealthy. But I was committed to making it work, so I stuck with it for a while. I understood "the purge" concept - that after using certain chemicals for so long your body reacts when you remove them or change do a different product.

My hair looked so bad and I was still having to wash at least every other day that I thought maybe it would be worth it to try washing my hair with just plain soap instead of shampoo. So I went out and bought Kirk's Castile bar soap. This lathered well and was fragrance free, and I was determined to be happy with it. But it wasn't working. I was trying to wash my face with it as well and the skin underneath my eyes was itchy, burning, and overly tender. My scalp was a little better, but not much. I stuck with it for a few weeks and finally gave it to my mom and said, "I can't take it any more! You use it!" (She switched to using Kirk's Castile instead of body wash about the same time I started using it for hair.) Since this time, I discovered I am allergic to coconut, and since castile soap is coconut based, I have a feeling this is why this product did NOT work for me at all!

I then switched to another bar soap called Yardley which has been made in London since the 16th century. I did not try this soap earlier because I knew it contained fragrance, and I wanted something that was fragrance free. But despite my preconceived ideas, my hair actually did better with Yardley than it did with the Castile soap. I was close, very close. I wasn't using shampoo, I was down to washing my hair about three times a week, and it was getting healthier. Oh, and by the way - my mother also switched from Castile to Yardley. Although Yardley does not lather and foam as much as Castile soap does, it gently exfoliates and doesn't leave a scum residue in the bathtub.

And back to poo!

One day while in The Vitamin Shoppe with my mom, I decided to scour all the ingredient labels of the natural shampoos to see if there was one that was not coconut based and that contained no sulfates. And I finally found one! It was even on sale! I proudly brought home a bottle of Biotin Shampoo by Millcreek and tried it at soon as possible. It does not lather, and it is more of a liquid gel than most shampoos, but it works for me. I love the pleasing peppermint-y smell of this product!

I wanted so badly to be a "no 'poo" person, but it just didn't work for me. But you know what else? I've found a product that...

1.) Makes my hair feel healthy.
2.) Makes my hair look healthy.
3.) Nourishes my scalp.
4.) Costs me about $1 a month.
...and... (you might or might not believe this)
5.) Enables me to wash my hair - not once every other day, not three times a week, but once every four or five days!

If I would have told the librarian who checked out my book, I don't think she would have believed me. But it's true. I still condition (I use Suave Naturals, which has done very well for me for many, many years), and yes, I still use 'poo, but *shrugs* my hair is happy. My hair is healthier, shinier, cleaner, and more beautiful than its ever been, but I wash it less and spend less on hair care product.

Who knew? :)

Buy it here from Vitacost, or here from the Vitamin Shoppe. They have other kinds I want to try, but some of them contain sulfates, which I shun, so just check the ingredients thoroughly before purchasing if there are particular things you are wanting to avoid for yourself. :)

Do you 'poo or no 'poo?

~Nella Camille

Thankful Things

The pleasure of serving other people.
I baked all these cookies for my dad and didn't eat a single one!
#candidawillpower

Essential Oils Diffuser
(doTERRA)

The ability to be able to be back to work!
(Jackson Plumbing)

The joy of visiting old people and shut-ins

Cinnamon cocoa! I will post a recipe soon.
(It doesn't really have any cocoa in it, so... don't be too disappointed.)

Little friends

Okay, this isn't just oatmeal and yogurt... though I am thankful for those things!
This thankful thing is thankfulness for the energy & capacity
to now make my own meals without feeling completely exhausted afterwards. 

Time well-spent with good friends, making memories. And Starbucks. :)

Why It Matters: Everything Has A Reason

We've all seen the meme. We all have heard the stereotypes. And we're all tired of having to explain. Having a chronic illness is hard work.

Oh, and we all know the other one, too, right?

Both quite true.... :)

But now, let's be serious. If you are reading this, you probably know the truth about what it is actually like to have a chronic illness. This is because either you have a chronic illness yourself, you are a caretaker for someone who is fighting a chronic illness, or you are very close to someone who is in one of those two positions. 

Life is hard. I've never been a fan of makeup, but from what I've been told, it saves some of us chronically ill people from scaring the world half to death. We're pretty good liars and disguisers of pain. And most of us have learned when it is and when it is not appropriate for us to venture out into society. Maybe its only certain hours, certain days, or during certain times of weather. The ugly truth is: we are not free. We are bound - restricted - against our will. There are events that we would like to attend that simply fall outside of the parameters of our ability to be physically or cognitively present. This is why attending school, holding a job, or sustaining friendships or a relationship can be particularly challenging to those who do battle with bacteria, viruses, and infectious diseases every day. 

Today I want to specifically talk to you about church attendance while you have a chronic illness. The way of life I have been describing is NOT just my reality, dear readers. It is reality across the board for all believers in Jesus Christ battling cancer, fibromyalgia, CFS/ME, lupus, MS, or RA. 

We chronic sickies at times have all felt different... purposeless... useless... lost... sometimes uncared for... defective.

Lies, lies, lies. 

But as these lies set in, it is so easy in our weakened condition for us to give in to them. It is so easy for us to say, "No one will notice if I'm not at church again. It doesn't matter that much anyway." We find it easy to be invisible, just like our illness. For me, invisibility was necessary. It was the path to healing. But I couldn't be invisible to everybody. I needed someone - something. 

Thankfully, I had friends. I had people. You know who you are; you are probably reading this. I had Trial Buddies and I have Drug Buddies and I have a CFS/ME Buddy. I had caring relatives who did all they could. They didn't let this mat of algae wash up on the shore; they splashed themselves up underneath me and supported me. Not all of it was spiritual. A lot of it was physical. My wonderful BFF Hannah came and sat with my while my parents were out at church or other places, and we would watch movies together and explore forbidden, frozen delights such as iced coffee and ice cream. Everyone did what they could. And it was good. I was thankful.

If you are reading this and you have a chronic illness, let me speak to you specifically. Actually, let me change that. If you are reading this and you are in what feels like a never-ending struggle in any area, let me speak to you right now. You are not alone. No matter what the enemy says. You matter. Church matters. The church matters to you, right now. 

Why? Why does it matter? Because you can't be a new humanity on your own. You cannot support yourself, encourage yourself, convict yourself, serve yourself, utilize your gifts for yourself, hold out hope to the world, worship, pray, give, love, or discipline all by yourself. You need others to depend on, rely on, uphold you. That's why God ordained the Church. Not just believers, but believers in the context of local churches, part of a larger global church. 

"You can't be a new humanity on your own" (Professor Abner Chou). What is Abner talking about? It goes all the way back to Genesis 2, when God breathed the breath of life into Adam. He did the same thing in Acts 2 to the church at Pentecost when he breathed His spirit into the church. This connection is profound. It tells me - it tells the world - that although humanity failed in Eden, it will not fail ultimately, because God has a plan. He has a plan of redemption. And so, this thing we call "the church" is important... because it is part of that plan. And as members of the church, we too can be part of that plan. 

Oh, it matters if you are in church - whatever that looks like for you, even if its not being physical present - with or without a chronic illness. It matters. Everything matters. Everything has a reason. 

And now. A word to the other class of readers. To those who do not have a chronic illness. To those who are not in some kind of struggle that feels endless. To those all around. Be encouragers. Find ways to make your pals with chronic illness part of this new humanity. Find out ways to hold out hope to them and with them. Visit them. Send them cards. Read to them, don't just give them a book to read. Involve them in sedentary ministry: bulletin folding, envelope stuffing, prayer partnership, etc. Call them. Talk to them. Read their blogs (hehe). Give them things to laugh about. Enjoy your local church to the fullest. Serve deeply. Give radically. Love... just love. 

We're all in this together. You can't be a new humanity without me, and I can't be a new humanity without you. We are a body. We hurt, heal, and live... together. 

Just a little part of the big body,

Camille

P.S. Listen to Abner's message. It is amazing! It made me more excited about church than I have been in a long time. He also answers some other really relevant questions in this message. Listen on that page, or download it and keep it on your iPod. Listen... repeat. Listen... repeat. I've already listened to parts of it at least three times. It's good; trust me. :)