13 May
but you don’t look sick — the spoon theory
I’m currently sitting in what I lovingly call the “green room.”
In the middle of this way-too-brightly-painted-green room sits two large chairs, a single IV station, and sickness. I can’t help but wonder if the bright green walls are meant to distract from the sickness?
It’s in this green room I receive my monthly Multiple Sclerosis infusion of Tysabri. Typically, someone else sits next to me and receives their infusion as well. But today she missed her appointment.
Last month, I was so eager for my appointment, I showed up 24 hours early!
Given my dependency on this drug, and the fact that after about two weeks, I start counting down the days ’til my next appointment, I can’t fathom missing this treatment!
Anyway.
The reason for my post … not whining or complaining, as that wouldn’t bless anyone. More like I’ve come to realize, when I share about my struggles with MS, I’m raising awareness. And that’s important. Especially with this mysterious and exceptionally crappy disease.
Awareness.
And I’m thankful for others who believe in awareness. Of any kind. Not just MS, cancer, diabetes, or the like.
I’m thankful for people like my friend Fiona, who posted a link to The Spoon Theory on Facebook. The Spoon Theory? It sounded really weird … what in the world?!? … what do spoons and chronic disease have to do with each other? Needless to say, I was more than intrigued.
As I read through the article and began to understand The Spoon Theory, I kinda fell in love with the author of the article {and website ButYouDontLookSick.com}.
Christine Miserandino, the author, suffers from Lupus. But as I read through, I realized her theory — analogy — applies to anyone suffering with chronic disease, even stress, grief, or a difficult life situation.
You see, the day after I read this article I was talking with my friend Terrie about a situation she had recently encountered, and I was able to share how The Spoon Theory applies to her life right now … and maybe always.
Maybe The Spoon Theory is something we could all learn from.
I have this really bad habit of not indulging in self-care. The honest truth is, sometimes I just don’t have the luxury of self-care. Being a single momma to four girls is hard work.
And because — to others and even to myself sometimes — I don’t look sick from the outside, I somehow can’t give myself permission to rest. And honestly … that said, sometimes it’s just plain near impossible to find a minute — or ten — to rest.
You might be wondering how The Spoon Theory plays into all of this? If you didn’t read Christine’s full article, here’s the gist of it:
Christine was out with a friend one day and the friend looked her straight in the eyes and asked what it’s like to live with a chronic disease. Christine was perplexed because the friend had walked this path with her for many years — she’d seen her highs and lows.
But the friend wasn’t satisfied with a “fluff” answer and pushed even harder:
“Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.”
Christine thought long and hard about how she could explain it in just the right way, and here’s what she came up with …
She and her friend happened to be in a diner at the time, so as Christine contemplated her answer and looked around, it came to her. She grabbed every spoon nearby and gave them to her friend.
“I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons.” But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with.”
Christine then asked her friend to talk through what a normal day’s activities looked like. For each “task” a spoon was taken from her friend. As her friend walked through her morning — she hadn’t even gotten to work yet — and already had six spoons taken from her.
By dinner, she had one spoon left and had to decide how best to use it. If she cooked, she wouldn’t have the energy to clean up after.
Reading The Spoon Theory really struck a chord in me. Somehow I feel I need “permission” to slow down, take it easy. Again, I truly don’t always have the luxury of rest, but there are times dishes can wait, and there’s nothing wrong with three nights of pizza. As another side … when one doesn’t look sick, one’s kids don’t realize they’re sick, and therefore continue to be demanding as … well … as kids are known to be.
Anyway.
My health seems to be rapidly deteriorating. My exhaustion level is at an all time high … pure and utter exhaustion. I had a doctor’s appointment the other day — in the middle of doing the “balance test,” she told me to stop so I wouldn’t hurt myself. My legs are continually getting weaker each day and I fear I may need to pull my cane out from hiding. These are just my newest symptoms. I still have the usual suspects {my usual suspects, as MS symptoms vary from person to person} — facial numbness and twitching, stabbing pain in my feet, along with a couple other unflattering issues — those are my most annoying symptoms.
And if you read through the list, none of these symptoms are visible from the outside — which comes back to the title of this post, “But you don’t look sick.”
For people like me, who have a hard time resting for “no good reason,” it’s very hard to give myself permission to rest.
But when I read this article and could visualize the spoons as my energy {and health level}, I felt like, “YES! That’s exactly right! I’m not healthy and I don’t have an endless supply of spoons available.”
Although I’m not as sick as Christine, her thoughts below helped me understand I need to be better — and not feel guilty — about self-care.
“It’s hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count ‘spoons.’”
As I mentioned, I think we could all learn something from The Spoon Theory.
1) not to judge others, as we truly don’t know what they’re going through.
2) we need to take care of ourselves — we should never feel guilty about a little self-care
It’s not easy … but I’m learning. And truly, if I don’t care of myself, who will?
What are your thoughts on self-care?
Posted in multiple sclerosis
13 Mar
MS awareness week
One disease. No two alike. Which is why it’s one of the hardest diseases to diagnose. So hard in fact, that many … thousands of many … go undiagnosed. All the while their symptoms worsen and they suffer.
MS — Multiple Sclerosis — is a crippling disease. And the longer it goes undiagnosed, the more permanent the damage.
Early detection, diagnosis, and prevention are so important with MS. Which is why awareness is crucial.
There are people all over this world who haven’t an idea of what MS stands for, let alone the many facets of the disease. Admittedly, until it touched my life I was pretty clueless myself.
Multiple sclerosis is an autoimmune disease of the central nervous system that has no cure and is highly treatable. In MS, inflammation in the brain and spinal cord causes the loss of myelin, the insulation around nerves. Symptoms include loss of vision, numbness, tingling, excessive fatigue and weakness. They can range from mild to severe.
In layman’s terms … myelin is the coating around our nerves. Think of it like the rubber that covers electrical wire. If that rubber {or myelin} wears thin or is exposed, there’s a short in the wire {or nerve}. MS attacks the myelin covering our nerves, leaving the nerve exposed. And because we have nerves all over our body, where the MS attacks is where we might feel most our symptoms. Since there’s no rhyme or reason to the attack, symptoms — along with severity — vary from patient to patient.
In a healthy person, myelin repairs itself. But in a patient with MS, regeneration doesn’t occur. Though current research is being done to change that fact.
I was diagnosed with MS in 2009 and for me personally, symptoms vary daily. I’m currently battling extreme fatigue. Please believe me when I say extreme. It’s only by the grace of God I make it through most days. I have other struggles, but it won’t necessarily bless anyone by going into all of them. And truly … compared to others battling the disease, I’m doing pretty good!
Even though new advances and research are being done every day, it’s so important to continue to advocate and raise awareness. If you have a moment, maybe you could share this post with someone … it could make all the difference in the life of another.
The National MS Society is another great resource to gather more information on this crazy, yucky disease.
Do you or someone you know struggle with a chronic disease?
Posted in multiple sclerosis
11 Dec
MS :: hope of a new treatment
I gave a little update, along with a pseudo letter to Jack Osbourne, back in July and wanted to give a new update today.
First off … no more injections!! Join me in happy dance followed by a moment of silence? Oh praise the Lord my friends, praise the Lord!! My body did not, I say did not enjoy the daily injections I’ve had to give myself. I’ve said it before and I’ll say it again, they were literally like being stuck by a wasp each and every morning. The needle didn’t hurt {at least not all the time}, it was the medication.
I put the needle in, release the medicine and 60-90 seconds later … OUCHIE!!!! The injection site would welt up, hard, red, and puffy. No thankful.
There were days I just couldn’t bring myself to purposely inflict the pain. Just couldn’t.
And then lately, I’ve been seeing ads for a new oral and I thought it sounded pretty promising … death and cancer weren’t a side effect!
When talking to my doctor about it, she wasn’t too hip on the drug and told me about an infusion treatment that has been having good results.
Only one catch … I’d have to have some blood work done to make sure I was a good candidate for the new meds. You see … the medication hasn’t been around too long, and had been previously pulled from the market because people were dying from it.
There’s a virus … JC virus {not sure what it stands for} … that 50% of the population carry. In a normal healthy person, one doesn’t know they have it. But if you’ve got an autoimmune disease, have the JC virus, and start taking immune modulators, the medication becomes deadly.
And so it was taken off the market.
And then.
Research showed exactly what was causing the deaths, and with some simple blood work, the JC virus could be tested for.
And so I gave them my blood. And two weeks later, a negative result!
Woot!!
I scheduled my appointment and went in for my infusion. And as much as it sucks to have an IV … there’s just something about the whole process that creeps me out … I’m so thankful I’m a good candidate for this therapy and that I don’t have to give myself a wasp sting everyday for breakfast!!!
Since hearing about the treatment and starting it last week, I’ve heard more and more good things … even some great things!
As with all MS treatments, they aren’t a cure … there’s currently no known cure … and they aren’t necessarily designed to help with symptoms. The treatments are primarily to help MS from further progressing in your body. That said, some of the treatments actually do help with symptoms, and I’ve heard amazing things about this one! I also just talked to someone who hasn’t had a relapse or evidence of further progression in five years!
Double woot, happy dancing, and praising the good Lord!!
I’m looking forward and prayerful to what this new med might do for me!
All that good news aside, I have some bad news … maybe I should’ve started with that?
At my last appointment, the doctor noted that my MS is noticeably progressing. Mostly in the area of my balance issues. In the July update I linked at the beginning of today’s post, I mentioned a slight issue in my balance. Nothing anyone else could notice, just subtle enough that I noticed.
Well … now my doctor notices. Although, she did mention that when I concentrate hard, my balance improves. Friends … she had me walk at a snail’s pace with one foot in front of the other, toe-to-heal action. At a snail’s pace. Concentrating. And then I was good to go. Criminy.
Anyway. She wants me to start physical therapy 3-4 times a week for my balance. I’ve started taking Holy Yoga classes a few months ago and asked if those could take the place of PT. She said yes, as long as I really focused on balance and did some at home as well. And well … you know … walk at a snail’s pace concentrating really hard on not losing my balance!
And so friends … that’s a long lil’ update on me.
I’ve missed writing here and hope to be back on a regularish basis connecting with y’all again!
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Posted in eye update, multiple sclerosis
3 Jul
multiple sclerosis :: an update
On December 31, 2008, I started having weird eye pain and by the end of the week, vision loss. I went in for testing and in January 2009, I was diagnosed with Optic Neuritis. I was told at the time there was a 40-50% chance of it turning into MS within 5-10 years.
Seven months later I was diagnosed with Multiple Sclerosis.
If you read my blog back then, you’ll recall the craziness of symptoms, treatments, and searching for a diagnosis. I recorded those posts under “eye update” and eventually “multiple sclerosis” if anyone has an hour to spare and is looking for some extra reading!
Multiple sclerosis is an autoimmune disease of the central nervous system that has no cure and is highly treatable. In MS, inflammation in the brain and spinal cord causes the loss of myelin, the insulation around nerves. Symptoms include loss of vision, numbness, tingling, excessive fatigue and weakness. They can range from mild to severe.
Through all the craziness and the eventual diagnosis, I feel like I took it all in stride. I didn’t feel sorry for myself and I never asked why. Sure it sucked. It still sucks. And I was honest about that and wrote about it. But I also trusted God had a plan for it all … I still do.
Anyway … with the recent news of Jack Osbourne’s MS diagnosis and all the “hoopla” surrounding it … I thought I’d chime in with a few thoughts.
I watched this video {kind of a long one}, and am kinda struck by the drama of it all. That may sound crass … but it’s how I feel. The family is “devastated.” He lost 60% of his vision in one eye which is “profound and terrifying.” I get it. I do. I was there. I lost part of my vision and it was scary.
I’ve been sitting here for the last 10 minutes contemplating deleting the above sentence and taking a different approach. But something tells me to keep it. It’s the truth. It’s my truth.
With the front page coverage of his diagnosis {and also some press of Ann Romney and her diagnosis}, I wanted to say there are many of us living with MS and the daily struggles it brings.
I guess the good news of the dramatic press coverage is the much needed awareness brought to the disease! I’m thankful for that.
I guess if I could talk to Jack about his recent diagnosis and the things I’ve learned over the last few years, here’s what I’d say:
Hello Jack!
Multiple Sclerosis sucks. Just does. And it always will. But it’s not the end of your life, or the world as you know it. I promise.
The injections you’ll take hurt. They’re a nuisance and annoying. There’ll be many days you just don’t feel like sticking a needle in yourself. But then you’ll remember it’s for your better good and ultimate health and so you’ll bear it. After some injections you may feel the need to tweet “we’ve got a bleeder over here!” and if you hash tag it with #multiplesclerosis, we’ll all understand. We’ve been there. And it could quite possibly be that at that very moment, as we’re holding a cotton ball on our own “bleeder” we’re checking twitter and reading what you wrote.
Your symptoms will come and go. Some days worse than others. Some more debilitating and annoying than others. But as I said, they’ll come and go.
Your limbs may go weak. They may fall asleep quickly and take too long to wake up. Your face may be numb for hours, or days. You may get stabbing pain in different parts of your body. You may feel like there are creepy-crawlers invading your skin, only to realize there’s nothing there. You’ll have brain fog, balance issues, and tremors in your hands and feet. Bowel and bladder issues … in fact, you may find yourself sitting on the pot sending a “private tweet” to a close friend saying, “I’m peeing! I’m peeing!” {or I guess you won’t really be sitting while peeing, so maybe that’s just me}.
And let’s not forget about exhaustion and fatigue. Pure-outright-you’ll-wanna-lay-in-the-middle-of-the-floor-and-nap-for-years exhaustion. You have a newborn in the house and I realize life is exhausting enough with children, let alone a disease that adds to the exhaustion. So be smart and rest when you can, get enough sleep, exercise, and be sure to eat well. These are things I’ve just started doing for myself and I can feel them making me stronger.
The worse part of this silent disease? Most no one will understand while looking at you that your body is screaming to them, “I’m hurting and I’m not okay!”
All this said … I encourage you to move forward with a positive outlook. I pray you use your celebrity to bring awareness and funding. Use your standing to let people know there is life after diagnosis, it isn’t the end of the world, and researchers are working to make advancements towards a cure every day.
Realize there are people all over this world hurting in deeper ways and with life-threatening diseases. MS? Sure, it sucks … but we’ll make it through. In fact, when adversity strikes, I like to ask myself how I can use it to possibly better those around me. What can I learn through the adversity and how can I encourage others.
This is why I’m writing … to encourage you that you’ll make it through this diagnosis and you’ll come out better on the other side!
Feel free to look me up if you’d like to have a chat over a cup of tea and scones!
As for me … last fall I found out I’d built up an immune to the injection I was taking. So I started a new medication that I inject daily. I loathe it. Truly. It’s literally like a wasp/hornet sting nine out of every ten injections. Red, puffy, stinging … the whole thing. Some days it takes everything I have to give myself those injections.
Other than that, my newest symptom, however slight, is a balance issue. It’s embarrassing at times. But it is what it is and I deal with it best I can. I have started drinking a juice that I believe is helping me a lot. My thyroid is starting to even out … I’d been on the same medication dosage for over 17 years and for the first time ever, it’s starting to lower towards normal.
Well … that’s about it on this. Thank you dear readers for your continued encouragement, kindness, and notes. You seriously have no idea how much they bless me!
Posted in eye update, multiple sclerosis
28 Jul
refinement {repost}
There is so much truth in this post. Who knew when I wrote it over a year and a half ago that I would be standing firm to these words today. And the whole MS thing? I believe I was healed from that nasty disease last night! This is a long post … but so many things to cling to in times of trial … I pray you read it through, and I pray it blesses you.
{original post 12.15.09}
The process of removing impurities or unwanted elements …
I started a bible study in my home a little over a year ago. It was something God started whispering to me about. Then it got stronger. And the signs got clearer. Everything fell into place. It’s an amazing story really.
Actually, I’m going to attempt to put the whole story together here … I’ve not done that before.
So as I said … it started as a whisper. God talks to us like that, you know. He starts softly … before you get the spanking. Oh, and for real … you better believe it … God spanks us. How many of you can relate?
Anyway.
I heard God softly telling me he was preparing me for something. Then I started getting signs. Hearing signs. I started following a blog where she talked about starting a bible study. The whispering got louder.
Out of the blue, I’d picture myself talking in front of people, telling them my “story.”
You can read more here …
So … when I finally figure out that God wants me to lead a bible study … I have no idea what I’m supposed to talk about.
Angie {the blog I linked to above}, was going to be doing a Beth Moore bible study. So I went to the book store to check into Beth Moore studies. They didn’t have a single one there. Now listen … I was in a Christian book store … and Beth is as Christian as they come. Her books and studies are typically all over a Christian book store. So the fact I couldn’t find a single one was a huge sign.
What did I find? A study from Max Lucado called, Facing Your Giants, the story of David.
Facing your giants, huh? Okay … I’ll bite. After all, I’ve got me a few giants in my proverbial closet!
I was finally putting together the pieces of the puzzle, and what I believed God wanted from me. I believe God wanted me to share with others the “giants” I had faced {up to that point} in my life and how He saw me through them.
And if this was the case, there was just one piece left to put into place. Without that piece, which involved permission from my husband, I wouldn’t be able to proceed.
This particular giant CJ and I have gone through is a biggie. Doozie, if you will. And I was purty darn sure he wouldn’t want me talking about it. In fact, up until that point, only a few close friends had ever known.
So God? If this is something you want me to move forward with … you know you’ve got a big hurdle to cross here, don’t you?
Wanna know how that turned out? You can read about how God had the whole thing in His hands, right here.
The rest is really history … We had our first meeting and have been going strong ever since. We started the study with “Facing Your Giants.” I started that first night and shared all of the things I’ve been through in my life. Everything. The good, the bad, and the very, very ugly.
My purpose was to open my closet and let others see that we all have “giants.” Some are big, some are small … but they are deep … and difficult … and need the grace of God to see us through them.
It was a great series, and a great book … I highly recommend it if you haven’t read it before.
And anyway … we’ve gone on to discuss marriage and now are studying the end times and a DVD series from John Bevere titled, “Driven by Eternity.”
And … let me loop back around to the purpose of this post …
In our study last week, John talked about being refined like gold. And that really struck a chord with me. I talked about it with the group and what it meant to me. Especially given what I’m going through now with my MS diagnosis and symptoms.
So the gift I’d like to unwrap for you today is … refinement. And maybe a new way of looking into your own trials and situations.
What is refinement? The process of removing impurities or unwanted elements. The process of refining gold means putting the gold dust in a crucible and heating it until it melts. It is then that impurities begin to come up to the surface as a dirty film. The refiner then takes a ladle to scoop off these impurities and discards them.
The refiner may repeat the process a number of times, ‘boiling’ the gold to bring up the impurities and removing them, until he is able to look into the refined gold and can see the reflection of his face, as if he were looking into a mirror. {text found here}
This is what the bible says:
“These {trials} have come so that your faith – of greater worth than gold, which perishes even though refined by fire – may be proved genuine and may result in praise, glory and honour when Jesus Christ is revealed.” {1 Peter 1:7, NIV}
What I want to scream to you all … to everyone who is “down on their luck” or struggling with unforgiveness, or going through a trial, or loss, or just plain ol’ being dealt a bad hand … you are being refined my friends! Embrace it.
And I don’t mean, for one minute, to sound trite. Believe me … I know. I know what it’s like to go through some unspeakable things. As honest and open as y’all think I am, there are still some things I can’t talk about here.
What I can tell you:
~ my parents separated when I was young
~ my father pretty much never wanted to see us
~ my parents divorced
~ the last time I saw my real dad was 32 some years ago
~ and the last words I heard from him were, “you are not my girls anymore”
~ as a child, I was sexually molested three times, by three different men
~ on a separate occasion as a child, I was held at knife point and almost raped
~ I’m divorced myself
~ 4 miscarriages in just over a year
~ I’ve been diagnosed with MS
That’s about where the story ends for now.
Because some of the other things I’ve been through are intensely private and involve other people, I can’t share some of the other things I’ve been struggling with for the last four{ish} years. And not that I wouldn’t share … I have shared with the 20 some ladies in my bible study group … but because I honestly don’t know how many and who all read this blog, or where the information would go …
But what I do want you to know is … I’m no stranger to pain. I know a trial or two.
What I also know … God will give you, again and again, the same trials sometimes until you learn {or embrace} the lesson He needs you to get. Much like the refiner of gold continues to repeat the ‘boiling’ process.
So here’s the thing … and I’ve talked about this before … but we need to be people who embrace what God’s given us. We need to stand at attention. Step up to the plate and be ready to swing.
Ask God … talk to Him … find out what He wants you to learn. We can. not. let our circumstances overcome us. We must rise above them. We must realize God has a plan for our lives.
There are a couple of songs that I love. Give me chills and make me cry every time I sing or hear them. I’ve linked the titles to a YouTube video of the song. They’re long videos {over 5 minutes each}, but they’re such inspiring songs. Maybe you could link and play the music in the background.
Please read the lyrics carefully … let them really sink in …
Bless the Lord
For your beauty,
For your goodness,
And your wisdom.. Awesome God
Praise the Lord oh my soul, Praise the Lord.
For your power,
For your honor,
And your splendor… Mighty God
Praise the Lord oh my soul, Praise the Lord.
Praise the Lord oh my soul, Praise the Lord.
{chorus}
For your Kindness
For your Favor,
For your Mercy.. Gracious One
Thank the Lord oh my Soul, Thank the Lord.
For your fire,
For your testing
And your Spirit… Holy One
Thank the Lord oh my Soul, Thank the Lord.
Thank the Lord oh my Soul, Thank the Lord.
{chorus}
For your Suffering,
For your Anguish
And your sorrow.. humble King,
Bless the Lord oh my soul, Bless the Lord
Bless the Lord oh my soul, Bless the Lord
For your Victory {Victory},
For your Triumph,
And you’ll soon come and reign over all.
The above song … we are thanking. And praising. And blessing the Lord … for His fire. For His testing. But also his power, kindness, favor and … wisdom.
I rest … trust … in the fact that our Creator has wisdom. He’ll not have me go through my trials {the trials He’s given me} in vain.
And here’s another thing … I believe when we can have this outlook … this kind of faith … He gives us the peace inside we need to get through it. I mean, isn’t that a lot of times, the worst of it? The torment and worry and frustration? Wouldn’t you want to have a source to “hold” that torment and worry? Don’t you want a place to rest?
The bible tells us, “Come to me, all you who are weary and burdened, and I will give you rest.” {Matthew 11:28, NIV}
Blessed Be Your Name
Blessed be Your name
In the land that is plentiful
Where Your streams of abundance flow
Blessed be Your name
And blessed be Your name
When I’m found in the desert place
Though I walk through the wilderness
Blessed be your name
{chorus}
Every blessing You pour out I’ll
Turn back to praise
And when the darkness closes in, Lord
Still I will say
Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name
Blessed be Your name
When the sun’s shining down on me
When the world’s “all as it should be”
Blessed be You name
And blessed be Your name
On the road marked with suffering
Though there’s pain in the offering
Blessed be Your name
{chorus}
You give and take away
You give and take away
My heart will choose to say
Lord, blessed be Your name
I will bless Your name
{chorus}
And again … with this song, here we are blessing the name of the Lord. In plenty and in want … I’ll choose to say, “blessed be your name.”
When the sun’s shining down on me … or the road’s marked with suffering … I’ll choose to say, “blessed be your name.”
Ahhh … I could go on and on.
Obviously, I feel passionate about this. I’ve been working on this post for over a week now and it’s been brewing inside me for even longer.
And if you’re still reading, you deserve a prize! :)
Even after yesterday’s discouragement … I trust in a God who has a plan for me. I rest in that fact.
Wow … this is a post of all posts … and no photos even! Sorry ’bout that … but hey … wanna know what God’s been whispering to me lately?
I’ll give you a few hints … it involves:
~ writing
~ chapters
~ a title
~ a hardcover
~ and a lot of work!
Posted in bible study, inspiration, multiple sclerosis, tuesdays unwrapped
