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I'm a redeemed child of God and the momma to four vivacious daughters. I'm passionate about finding hidden blessings in the trials of life, living it out in an honest and open way, while encouraging those around me to believe in better.

29 May

world MS day

It happened. Just a couple of weeks ago.

I had my first “MS fall.”

It happened so fast, I couldn’t even process. And it wasn’t until later in the evening — when the full impact of what {literally} went down hit me — that I cried.

I had just gotten a much-needed-toe-painting job done when I decided to take the glamorous paper toweling out from between my toes.

Really, I could’ve handled it myself. But the ever-helpful Jasmine said she’d do it for me.

So I raised a foot to her and the mere seconds following are now somewhat of a blur … except for the large and tender bruise on my right forearm … and my ego.

When I raised my foot, I immediately lost my balance and started going down … fast!

Only it was like slow motion as I grabbed at everything in my path to help break my fall … kinda like when you’re doing the back stroke in mid-air? Out of the water?

That was me.

Until I hit the ground.

Honestly, I’m a bit embarrassed to share this. It’s like admitting something that you just don’t want to be true, you know? Like sometimes it’s better to stay in denial?

But. Being that today is World MS Day, I decided to share my story and continue to raise awareness. Document my journey and share the ups and downs of living with Multiple Sclerosis.

Do you know someone living with MS? Or for that matter — any chronic health disorder? Is there something you could do to reach out and encourage them today? Is there a way you could raise awareness to what they might be suffering with?

Please believe me, a note of encouragement or acknowledgement will go a long way!

{image via world ms day}


Posted in multiple sclerosis


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.

{photo credit}

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