Perseverance

So I have been on a mission for healing for 20 days now. That means that 20 days ago I began a round of steroids, in hopes to kick this disease back into remission.12 days ago I started a work out routine, ensuring some sort of strength or cardio each day, mainly using Jillian Michael's 30 day shred or getting my heart rate up during my daily cleaning. 10 days ago I began eating a Paleo diet, the diet of the caveman that is said to help people reduce or eliminate inflammation issues completely.7 days ago I began a woman's bible study, challenging me to dig deeper into God's word and meditate on his goodness and peace.

 And tomorrow, my steroids end and it's a wait and see.

Each time recently that a treatment has ended, it's been about 4 days till I see symptoms creep up again. At best, I put a little makeup over the rash and continue on my day. At worst, my spirit is crushed, my muscles ache, and my heart once again wrestles with the "why mes" and the "how long oh Lords".

"And not only this, but we also exult in our tribulations, knowing that tribulation brings about perseverance; and perseverance, proven character; and proven character, hope;" Romans 5:3&4


I have hope for the days ahead. Even if the disease flares, even more painful than before, Jesus is doing great work in my heart to keep my eyes fixed on him. Though it hurts,  deep down I desire to have my faith tested, so that I can see where any gaps in my heart might be.

Thanks for all of your support and encouragement as I walk through this debilitating illness, while trying to live without holding back.

A little Monday recap 1/28

Some of my posts will be super informative or helpful, maybe meant for some special demographic in my life. And some of my posts will simply be to keep myself ( and you in the process) updated on all that's going on. Lord knows I will forget tomorrow what I did today!

Things I want to remember about this week ( 1/20-1/27)

A new round of Engage began- Engage is a women's bible study held at my church and last session was my first time to get to attend. This is my second session and I am very excited to be studying 1 Peter and purposefully carving out time to be in His word. For women who are having trouble finding devotional time- I suggest getting involved in a bible study group if at all possible. Our church offers childcare during this time- which has been sooooo beneficial for me.

Dinner with my college roommate- My college roomie, Alex, and her hubby and their two kids flew out of Lexington this week which means our family got the opportunity to have dinner with them!!! We ate at Saul Good ( and I was able to stay true to my diet) and the boys were so well behaved. I loved getting to hear of Alex and Jamie's heart for adoption, for missions, and for their growing church. Jamie is the pastor of Lakeside Christian Church in nothern KY and we are excited for all that God is doing there!

Paleo success for 7 days straight- One week of this crazy diet down and I am feeling a difference. I'm down a few pounds, have felt less "creaky" in my joints, and feel overall positive so far. I cannot believe that I have not cheated, not to say I haven't been tempted. When a diet is for weight loss, you can rationalize that one starburst isn't gonna go straight to your hips- but with this, I know that one dinner roll or wheat product could throw the whole effort out the window. My favorite meals this week have included BDs Mongolian grill (I had never been there, but awesome for Paleo) homemade pulled pork, a bacon and spinach quiche with an almond flour crust, and a batch of cookies made with coconut flour and almond butter.

Jillian Michaels 30 day shred- 3 times... so yeah, not doing so hot on this one. But hey- I like the DVD and now know what to expect, so hopefully I can get more consistent with it this week!

Worship at Church- I also subbed in at church when our other vocalist was sick and was so glad to have to opportunity to witness what Jesus did in so many hearts this weekend. Here's a link to a pic of that! (this is my first photo link effort, so let's hope it works)
http://photos.questcommunity.com/2013Frankfort/I-Love-My-Church-January13th/The-6-Hills-Well-Die-On-Part-2/i-hP3T2wv/0/M/20130127%20Church%200014-M.jpg

Hope you all had a great week!

In the Moment

One of my goals for 2013 is to be fully present.

This may sound simple or trite, but in all honesty, there are too many times I can go from task to task or errand to errand on autopilot and wonder where my day got away to. What's worse is when I can be in a room full of people, but my mind races so quickly that I'm thinking of where I will be next, what Ian is into, how uncomfortable I may physically be, or even surfing social media on my phone just to occupy my fingers for the moment. When I first became a stay at home mom, it was all I could do to keep my son alive throughout the day- feeding, diapers, crying, napping... it seemed so overwhelming. Now that all of those things happen more naturally, I've been trying to take inventory of my time each day, to help me find a great balance in the mess of it all.
I really used to think that stay at home moms had it easy. That it was like a constant vacation. Yeah, you would have a little person attached to you, but you could still do basically whatever you wanted, right? FYI, that is NOT the case!!!

1st off, babies/ kids are unpredictable. The moment you think you can sneak away to use the restroom, someone is crying because they saw you walk away. The instant the nap begins and you plan to get some real housework done, the mailman comes and makes your dog bark which wakes the baby which starts the crying again. Even on a perfect 4 hr eat/play/sleep cycle (which has worked great for Ian up to this point), growth spurts happen, meetings and errands interrupt, and diapers explode!

2nd, pressures come from everywhere!!! I may not have a "boss" that I report to or who gives me a quarterly review, but you can bet that almost everyone I interact with has a thought on the way I run my household and raise my baby. From well meaning women who can't believe I'm still breastfeeding at 9 months (doesn't that tie you down? can't your baby take a bottle from someone else?) to folks at the grocery store complaining (your baby looks tired, shouldn't he be napping? are those bananas for the baby? they're not organic) to a husband who might come home from work and ask (what did you do all day?), the questions and comments are endless.  Don't even get me started on the internal monologue that goes on when I see other women's boards on pinterest and their facebook posts about the amazing things they do with their kids. I'm constantly wondering am I going out with girlfriends and making play dates too often? Am I sitting here alone in my home too much? If my husband comes home and I'm still in my PJs, have I failed? Or must I be up before sunrise every day to appear pristine and put together for all the world to see?  I might not have as detailed of a job description as someone else, but that's part of what makes my new role so challenging. And this is only the tip of the iceberg. I digress.

All I want is to raise this baby (and any others that come along) remembering that I am simply stewarding this child. I cannot control who he is, who he was created to be, because ultimately, I did not weave his life into existence and I do not have counted the number of breaths he will take. He is mine to love and shepherd, but only as someone who knows that one day he will begin to make his own decisions, stretch his wings, and leave the comforts of this house for something more. When that day comes, I want him to remember all of the fun we had, all of the lessons we learned, all of the people we served, and how much we were truly present with each other. I want my son to watch me weave a legacy of hope and love to everyone we come into contact with and for him to understand what it really means to listen and be fully alive in each moment.

So if you happen to get to spend some time with me over the next weeks and months, make sure you ask me how I'm doing at being present in each moment. Planning too far ahead and worrying about the next only steals the joy from the sacred moment right in front of me.

Buy Buy for your Baby Baby

I went to Buy Buy Baby today. It's been a while, but I needed a replacement filter for Ian's humidifier, and I ended up walking around for about an hour in there, reminiscing about the time I was registering for the little guy, almost 14 months ago now. It's incredible how much you think you'll need, how much you want to have, and how shiny and awesome everything looks, all piled high to the ceiling. You imagine what your baby will do with each and every item- you can picture where it will go and how it will be needed in your nursery. Little do you know the discounts you can get on second hand items, that half the stuff on your registry will go unused or unloved, and that quicker than you can say "dirty diaper", most of what you got at your baby shower will be in your basement closet.

Here is what I learned through my registering/ baby buying experience.

1. Take someone trusted with you, or at least talk with them before you go. Maybe it's always been your dream to register with just you and your hubby, but taking someone experienced or knowledgable can be so helpful. Someone to tell you that Pee-pee tee pees will not ever work, someone to ensure you don't buy the 1,000 dollar stroller that won't fit in your car, someone to remind you that your baby will only wear these newborn sized clothes for a matter of weeks, if not only days! Now I don't want to burst your bubble- if you have the money and space to waste on junk, but knowing what's important and necessary is so beneficial.

2. Don't wait until the last minute and don't plan to do it all in one day.  Although is can be super fun, registering is more like making lots of tiny decisions with unknown outcomes, and depending on your personality type and stamina- it may actually be more work than you think. Plan to spend no more than 2 hours cruising the aisles on any one day or you may end up grumpy and hungry- and being pregnant- you may have started the day out like that already! Most people I know try to register around 20 weeks- when you have learned the sex of the baby (if you are finding out) and feel confident that you love the theme or colors you've chosen. Remember, you can always go online and change every single item you picked out anyway!

3. Think about the whole first year. Try to pick out a few toys or items baby will need at 9 or 12 months, when friends and family's wallets have stopped being so generous and your little one isn't the newest kid on the block anymore. Don't forget to register for diapers of a few sizes (since you don't know how big baby will be when they arrive). The number one thing I regret not registering for is a convertible carseat. The baby carrier/stroller combo has worked great for us, but my little guy is so tall- we needed to purchase a 300 dollar carseat just 6 months after he was born. If only someone would have told me...

                                           L J's Top Ten Baby Items ( in no particular order)

1. Pack N Play ( with changing table attachment)- We used this on our main living level. Ian's nursery was upstairs, and it was a lifesaver to have a nearby changing area and place to store his needed items, plus he learned to sleep well in it during the day which makes him used to it for when we travel. Now we can throw toys in there with him and it's a safe place for him while I shower or cook, etc. Having safe places throughout your home is key!

2. Jumparoo - We first put him in this at around 4 months and he still enjoys it today. I love the jumparoo the most, but an exersaucer or activity center will work too.  The one we use is on loan from my friend Julie, but I think brand new they are around 100 dollars. It's a great place for them to expend energy, and again a safe place if you need to use the restroom!

3.  Highchair - We didn't register for one, knowing that we wouldn't need it right away and we ended up buying ours at a garage sale for 5$. As soon as he could sit up a bit, putting him in a high chair with toys got him used to that feeling of supported sitting, and he enjoyed being on our level during meal times. We love that ours doesn't have a ton of fabric or bells and whistles which keeps it easy to clean.

4.  Boba Carrier- Carrier, Wrap, Sling- whatever you call them or prefer, this was a life saver for me. I wore Ian around the house often from when he was around 3 weeks old until around 5 months or so. This carrier is the only way I was able to grocery shop and run certain errands effectively. I still wear him on walks and he can fit in this comfortably until about 3 years. Love love love my boba carrier!

5. Medical Kit with Nasal Aspirator/Nail Clippers/ Thermometer - Ian was certainly a scratcher from birth. He was only a week old when we cut his nails for the first time, and we have to cut them twice a week currently just to keep him from hurting himself. A nasal aspirator is so helpful when their little noses get snotty, and a thermometer is key for helping us know if Ian needs to head to the dr. We have one that says his temp out loud and is read from his forehead, which was worth the few extra bucks.

6.  Swing - Some babies love the swing, some babies could care less. But if you are blessed with a baby who will swing happily and sleep here, it's worth the money, even if you'll only get about 6 month use out of it. This is a great item to buy second hand or to borrow from a friend.

7. Breast Pump- If you are breast feeding, even if you plan to stay at home with your kiddo, invest in a great pump. My husband had no idea the commitment that breast feeding would truly be and wondered why we needed to spend so much on this. Because feeding can be so different for each woman, you never know if you may need to be a mom that exclusively pumps. Just know this- without a pump, you can not leave your baby for more than 3-4 hours tops, EVER while you are breastfeeding, without pain, engorgement, or issues! The pump frees you up in so many ways, even though it too, can make you feel a little like a dairy cow. Ohhh.. the places I've had to feed/pump :)

8. Nursery Seating- You will spend many nights without sleep. Having a chair and ottoman combo has been amazing, but some folks find all they need is a chair with a high enough back to support your head. Chairs can be very pricing at baby stores, so look around before you drop 500 dollars extra, just because it came from the same place as everything else.

9. Car Seat/Stroller - Look for the features you like best and focus on that- the handle shape, the weight limit, the safety rating- don't just pick the cutest one. And don't worry about buying the travel systems that are sold together- i promise they have adapters and convertors for just about everything out there. This is also an item that you probably want to buy gender neutral if you plan on having more than one baby.

10.  Crib- No matter when you feel is the right time to move your baby from in the room with you to their own nursery, the crib is a key ingredient. I found mine for around 200, and mixed and matched pieces from places to make one good looking set. Make sure you think through if you want your crib to transition to each step with this baby, or if you will use this crib for all of your children. That may help you decide how many pieces of furniture must match and fit in the room.

Bobba Carrier

                                                                             Crib

                                                       Falling asleep in the Jumparoo

For good reason, items NOT on this list include bedding set, boppy pillow, moses basket, bumbo seat, playmat, diaper geanie, wipes warmer, etc.. feel free to ask me about any of these...

Long post for sure, but I hope this will shed some insight for a few of my expecting friends out there! Hit me up with any other questions or thoughts! I'd love to hear what others have found necessary as well.

Why it's worth it...

Today while enduring my first day of trying to eat a strict Paleo diet, I  had to dig deep to find the motivation to continue, even after just one meal. My favorite meal is a bowl of cereal, any kind, any time of the day or night, and not waking up to that very thing this morning was already a downer. As I may have mentioned before, I am the suckiest at dieting, mainly because I don't even realize that I'll be nursing a sweet tea all day or that I might pop 20 starbursts into my mouth during a single hour. But this diet is different- this diet may save my life.

I was looking back through some pictures today and saw a few of me when I was on my longest round of prednisone, a few years back. 

(15 pounds up)

Compared to my normal size

If you don't know much about steroids, let me just tell you- you want to make sure that the benefits outweigh the consequences. 

Steroids commonly cause:

Excessive hunger/thirst

Chronic trouble sleeping

Nervousness

Rapid Heartbeat

Mood Changes

Abnormal Weight Distribution

Excessive Hairiness

(just to name a few, and I've experienced all of these)

You start to think you might be going crazy, or wondering if a certain ache or issue is your condition worsening, or a side effect of the drugs. Often times, folks with my disease end up on a cocktail of 3 or 4 different drugs, all with the ability to confuse your symptoms and give you even bigger issues, then you take more drugs and supplements to counteract the negative effects.  It's a never ending cycle.

Currently, I'm only able to take one specific steroid and only for short time due to the fact that I'm breastfeeding, so my doctors have big plans for me once I wean my son. 

And that brings us back to why this diet matters. I don't want to be a guinea pig on a bunch of drugs. I don't want moon face and hair on my chin and "roid rage". I just want the simplicity of a life apart from disease.

Here's to a great day 2!

Back from the Underground and the Paleo Diet

Our Mammoth Cave Tour was exactly what the doctor ordered! We had a great time exploring and even got to see a few bats! There were places where all we could do was roll or crawl, places we had to climb up and down, lots of walking hunched over- and we can't wait to go on another trip! I did sweat and it was a bit taxing, but I was very surprised at how well my body held up, muscle weakness and all. Below are a few pics of the fun!

Where are some fun places you've been to recently or recommend for us to visit in the near future? I'd love to hear what you like to do with a free weekend with the family!

In other news, I've been reading a lot about the Paleolithic diet, a diet that seems to be less about weight loss and more about a "healthy" lifestyle that mimics eating like our ancestors, the cavemen. The diet consists of meat, veggies, fruits, nuts, seafood, and healthy fats, but avoids grains, processed sugars and foods, alcohol, legumes, starches, and even dairy. Let me first say that I don't consider myself overweight at all. I'm 5'4" tall and 120 pounds, 8 months after my first baby. I'm happy with how I look, but would love to be just a bit more toned and want my heart to be healthy. That being said, my body is at constant work against itself. Being diagnosed with an autoimmune disease sucks because no matter what you may be able to get your outsides to look like, your insides are always under attack. In reading about Paleo, some are calling it an unhealthy fad, while many are speaking of its amazing healing powers. People with RA, MS, and even Dermatomyositis are claiming complete recovery, remission, and/or significant improvement from their disease in as little as 30 days.

 Recovery? Remission? Why WOULDN'T I want that?  Or at least to give it a try? Let's see here, because I haven't ever been able to follow any type of diet plan or regimen for more than like 12 hours... ever in my life. I don't know if it's my sweet tooth, or that I just get hungry and grab what's in the pantry, but to me, dieting has never worked. But maybe it's because there wasn't enough at stake. I've never really needed to lose weight, so what did it matter if a little diet plan I made failed?

So tomorrow it begins. I will take this diet one day at a time, doing my best to be as compliant as possible, while not isolating myself or starving myself in the process. My goal is to make it 14 days. This seems within reach, yet very difficult, which makes it a good first mile marker. And I'm hoping that within those 14 days, I will begin to see and feel a difference. And if that's the case, then I pray going forward becomes easier and maybe, just maybe, I can adopt this diet as a lifestyle and achieve wellness like I haven't had in years.

If anyone reading this follows a similar diet plan, I'd love to hear your thoughts and comments, as well as gather any recipes and meal ideas from you. I'd also love any prayers you are willing to send up as I get my hopes up for what I know God can do through trusting Him through all of this. Regardless of any actual results, I know my God is bigger than any disease or circumstance I can find myself troubled with.

L J

Celebrating 3 years! We're Getting Away!

Tonight is the night! For the first time since baby Ian came along, James and I are heading out, just the two of us! Now James has gone camping a time or two and I attended an overnight leadership retreat in August, so we have done the overnight away thing, but this will be the longest that both of us, at the same time, are away from the little man.

I'm sure he's going to do great. He gets to spend the time with his Memaw and Papaw, who will probably hold him way more than I get to in any given day. He's gonna be so spoiled!

I've heard from a few of my friends that they have trouble getting away like this- and I think it's super important to MAKE it happen.  Usual excuses include -baby won't take a bottle- baby night nurses a lot- no trustworthy sitter- job won't allow time away- baby is colicky-no money or place to go- etc. But I find that it's so important for parents to get away every now and again, to get back to their relationship roots, to enjoy a long conversation without cries or interruptions. It doesn't have to be fancy, it doesn't have to be a long trip- But if you are reading this right now, and you can't remember the last time you and your spouse enjoyed at least 5 hours out, together, being YOU- I challenge you to make a plan to make this happen soon! Trust me, you'll be glad that you did.

For us, we are checking in to a bed and breakfast, leaving our smart phones and ipads behind. We'll enjoy a fun evening staying in - hopefully playing a board game or two before playing other games that require nothing at all :)wink wink:) - Then in the morning, we'll get the free, homemade breakfast before heading to a Spelunking tour at Mammoth Caves. Not quite the crazy hikes and camping that we'd love to be doing, but an adventure non the less. I'm praying the tour won't be too strenuous for me with my disease, but I know I can push through anything for 4 hours.... ( Baby's labor was 24 hours, but that's a whole other post for another day) Hopefully I will have a pic or two to share when we return.

One more pic of the babe, just because I will miss him for sure!

            And one of us on our wedding day, since that's what we are celebrating! 1/16/2010

On Top of the World

                                            Some days, you just feel on top of the world.

That picture was taken on a trip I took to Seattle, a few years back. A friend and I hiked up Mt. Si. It was supposedly a simple climb, but the entire last mile was almost straight up, in snow up to my knees. And I was only wearing tennis shoes. I pushed through a lot of pain and weariness that day, and I love to look back at this picture whenever life seems tough, because it reminds me that we can't always see the entire path before us, but we can be sure the end result is worth the climb.

"Where's My Chauffer?"

Spent some fun time with a gal pal from college today. Her son just turned one and is super cute! We spent time at the library together, watched some Scrubs, and got both of the little guys to nap at the same time! One of my favorite things- this nail polish color! Mary loves nail polish and let me try this one out. It's called "where's my chauffeur?" and it's made by Essie. Did I mention it matches everything I love?

In other news, I'm going to be starting Jillian Michael's 30 Day Shred tomorrow. I will take some before and after pics. Figured the best time to start a new work out routine would be during a round of treatment- that way I have the energy and strength to carry it out. NO EXCUSES! 

Cloth Diaper Thoughts

A while back I went to a "New Mommies" group and I couldn't believe what I was seeing. There were 9 kids there, 5 in diapers. And 5 out of the 5 were in cloth diapers!!!! I won't take the credit for all of these mommas, but it's neat to see how a little support and encouragement can go a long way. I think a lot of moms think about the old style cloth diapers and all of those pins, or they just picture poop everywhere, or they just imagine all this laundry work they'd make for themselves- SO WHY WOULD ANYONE WANT TO CLOTH DIAPER?

( My guy is in the white, at 9 weeks old here!)

Here's a simple list of reasons why I chose to cloth diaper for those of you who think I'm crazy.

CLOTH DIAPERS SAVE MONEY!!!! They say the average parent spends around 2,000 for each baby from birth to potty training on disposable diapers alone. If my husband and I have 4 children, that's at least 8,000 dollars in GARBAGE that we simply place on them momentarily and discard. A good diaper stash can be purchased for around 500 dollars, give or take some based on the style and brand of diaper you choose to go with. Cloth diapers can easily be reused for each child, but maybe the 4th is finally a girl or I need to replace some elastics... so we will add 200 more just for upkeep/ refreshing. SO that's 700 for cloth, 8,000 for disposable.... Ummmm... do you get the money saving picture yet? We could break it down even further, and calculate all kinds of tiny costs, but the gist is, cloth diapering can save you money.

CLOTH DIAPERS ARE BETTER FOR THE ENVIRONMENT!!!! 27.4 billion disposable diapers fill our landfills each year. And since the disposable diaper has only been around for apx. 65 years, we have no clue the depth of impact that this will have in the long run. We only know that these disposable diapers aren't going anywhere aka they are not biodegradable, not breaking down, and crowding our precious landfill space more and more every year.

CLOTH DIAPERS ARE BETTER FOR BABY BUTTS!!!! My little boy came home from the hospital in disposables with a rash already in place. We moved to cloth diapers on day 5 and it was 2 full weeks before that rash was gone. And we've never seen one again since ( He's 8 months old currently).  There are plenty of cloth friendly ointments and lotions out there if we spot a bit of redness, but cloth diapers are made with soft fabrics and many organic options are available as well, keeping baby's butt closer to nature. I can also tell you that all of those crazy chemicals in disposables are not what I'd want on my body! Once when our son was wearing a disposable (can't remember the details of why he was wearing it in the first place), my hubby said "I think he needs to be changed, He stinks!!" I took him and smelled him and it wasn't a poop smell, but something awful. I changed him and there was nothing foul in the diaper at all. I then went over to where a few disposables were hanging in the diaper stacker and sure enough, there was this chemically smell coming from them before they were even being used. It really grossed me out! Ok, enough on this topic.

CLOTH DIAPERED BABIES POTTY TRAIN FASTER!!!! Disposable diaper makers are constantly trying to improve upon their "stay dry" formulas, working to make it so your baby doesn't even feel wet! While this may seem helpful, I know moms who are happy to leave their baby in a diaper until the baby becomes upset, which could be hours and hours in these fancy disposables.  In most cloth diapers, once it is saturated enough (unless you are using stay-dry materials or liners), a baby will feel that he is wet and want to be changed. As they grow towards potty training, the awareness of being wet is key to wanting to "go pee pee in the potty".

CLOTH DIAPERING IS FASHIONABLE!!!! It is definitely fun to match my little man's diapers to his outfits. I love the compliments we receive while wearing some of the fun colors and patterns we have, and comparing our diapers to our friends colors and styles. So much fun! I had no idea there was such a cult following for cloth diapers, displayed on countless blogs, facebook groups, and mom group chats. Just check out Ragababe.com, Spot's Corner, Jillian's Drawers, Diaper Junction, Ebay, and even YouTube to see just how excited and crazed women can get about these things! I know personally, my husband has had to change so few diapers because I am excited for each change with a cloth diaper!

There ya have it... that's why I chose to cloth diaper!

52 weeks of Organization Update

Happy Sunday to you all! Great weekend services at my church ( Quest Community Church), great talks with my sister (who leaves for Brazil today) and great start to my new round of treatment ( day 2 and I am already feeling some of the difference).

Here are two pics I took of myself the day before I started the steroids. These are obviously with no make up and in lighting that I thought would show you the rash the best. All self-esteem issues aside as I show you what I see in the mirror every day...

In other news, my 52 weeks of organization is still going strong. Today I tackled I few areas in our bedroom (the dresser tops and the drawer in my sewing station) and James organized the closet in the laundry room. Yay for getting ahead! If you don't know what I'm talking about- In November I began a 52 weeks of organization challenge. I simply made a list of 52 over looked or under organized nooks and crannies in my home and challenged myself to end the following November with a home that has a place for everything. I think our main problems with clutter and cleaning come from not knowing where to put things. When you know where "home base" is for anything and everything in your house, then it's only laziness that stops you from getting it clean. And I don't want to consider myself lazy, so I'm getting my booty in gear and making a change! 

So far I have completed :

My walk in closet

Foyer closet

the SUV

under the sink in my bedroom bathroom

living room built ins

the Man Cave

my Sewing Area

the under the stairs closet in basement

cloth diaper storage area

the nursery

the playroom

Anyone have any problem areas in their home that they would love to have clean/organized one day?

Dermatomyositis

James will be picking up my medicine on his way home from work. Another round of steroids to kick this flare back into hibernation. For anyone with a chronic illness or disease, beginning a round of treatment is like a roller coaster. I'm full of excitement and hope- I know I will feel better, look better, BE better soon. BUT I'm full of skepticism- how long will I feel better, look better, etc. Will I flare again the day after I stop the medication? Will I flare worse or will I crash after the euphoria? Will this be the round I have roid rage and go crazy on those I love? Are the benefits of this treatment worth the side effects on my body? Will this be what eventually kills me? So many questions.

 What I have is called Dermatomyositis. It's defined as a muscle disease characterized by inflammation and a skin rash.( Google image search it right now!!!) Basically I have muscle pain and soreness, mainly targeted in my shoulders/arms and hips, with a dash of skin rash, mainly on my face/neck/hands/elbows. This means that I get tired after brushing my hair just a few strokes, that picking up my 21 pound son is very difficult for me, that going up and down stairs or doing repetitive motions can really cause me to tire quickly. It also means that where ever I go, people are commenting to me on my rash. "Wow girl, you need to wear some sunscreen." "You look really tired today." Or one I got leaving church this past week- "Did you cry through the whole service too? Your face is so red!" What's tricky about my rash is that it's not completely obvious. We've all seen someone with a hideous deformity, and of course we wouldn't dare mention it to them or make fun of them for it. But because my rash is sometimes lessened by make-up or doesn't follow a familiar pattern, most people feel fine to comment on my face pretty regularly. Usually I just shrug it off, or agree with whatever comment they've just made. On the occasion that I say, "Oh, it's just my autoimmune disease", people don't know how to really respond and they feel bad and I hate making people feel bad..... so, I'm still working on my response.

 I'm starting this blog for a few reasons. 1. To bring awareness to a disease that many folks are unfamiliar with 2. To help keep records of my thoughts and feelings as I work through this season of my life 3. To chronicle all of the amazing gifts that God has given me, so I keep my hopes up for what He has in store for me still

 Thanks for following me! I hope we can learn a lot from each other!
 L J