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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.

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


12 Mar

thankful saturday

Thankful for my mommy who joined me for one of my treatments and also challenged me to a game of chess … it’s been years!  She took the first game and the second would’ve been mine if I hadn’t started chatting … darn me!  :)

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Posted in eye update, family, multiple sclerosis


8 Mar

it’s back …

Optic Neuritis that is.  It’s back in my other eye.  It started Sunday after church … vision loss.  Not so much pain {thank goodness!}, but things are pretty blurry outta my right eye.

And now I gotta go back for IV steroid treatments … asap.  As the longer I wait, the more permanent the damage becomes.

Here’s the thing … I’ve been dealing with some other kinds of ‘heavy’ right now … but the great thing was that I’d felt God had lifted my MS and symptoms so that I could deal with the other issues at hand.  I’d really been feeling great lately!  Some minor numbing and this crazy-icky ear pain that comes and goes … but overall, I’ve been doing really well.

Until Sunday.  Right after church.  Great message … great service … great worship.  And then as I’m walking out to the car, I realize my vision is all screwed up.  I thought maybe I had some eye-gunk {sorry!} in there, but nope.  Nothing.  Just blur.

Anyway … can I be honest?  I’m feeling a bit like Job … in fact I mentioned in a recent Bible study that if God wants me to be His Job … if that’s what it takes for my life to glorify Him.  Then so be it!

This absolutely sucks the sucky … but will I back down in my trusting of Him?  Never.  It’s because of Him and His promises that I can stand faithful.

Anyhoo … I didn’t take well to the steroids last time … so would love if you could lift me in prayer over the next week or so?  It took my body a while to recover from them last time.  Thank you, thank you!  I’m feeling blessed knowing you’re out there and care!

And … because no post is fun without a photo … here’s one I took of the girls yesterday on the train to Chicago.  They had a legit day off of school, so we headed to the Shedd Aquarium for a visit with the marine life!

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Posted in eye update, multiple sclerosis, prayers


17 Sep

hurray for full doses!

I so struggle with thinking I’m complaining by telling people what’s going on with me … but in recognition of a couple different things, I thought I’d give an update with the latest …

First of all, tonight I’ll take my first full dose of medicine … hurray for full doses!  :)

So far, the treatment hasn’t made my symptoms any better.  At times, I feel like my facial numbing is subsiding and just when I say so {like yesterday to a friend}, it comes back.  :(

Secondly, I came across this brochure in my doctor’s office and thought I’d like to share it.  Just the first few pages, but I think they say a lot.  And between the lines, I guess they say a lot about how I’m feeling inside?

091709-ms-brochure

Again, my plan isn’t to turn this into a multiple sclerosis blog, but it’s now a part of me and in some sense, I also feel a responsibility to raise and share awareness.  In fact, I added ‘multiple sclerosis’ as a category.  This whole thing started as an “eye update” and I’d been categorizing it that way … but I figured the time has come to put a label to it.

But … eye update seems fitting today … as I’ve just had a flare up this past weekend.  It started in the middle of the night on Saturday … lots of pain in my left eye {eye of choice}.  By Sunday, it’d gotten worse and I was losing vision.  Not significant, but noticeably enough.

I got a hold of my doctor’s office on Monday and they wanted me to come in.  I’m glad I called.  I generally don’t call.  Anyway.  It wasn’t a severe flare-up, but he wanted me to come back for a dose of IV steroids and then a script for oral for 15 days.

I went in on Tuesday afternoon.  And for some reason, walking down that hallway into the treatment room, just got me sort of emotional.  I just didn’t want to be there.  I didn’t want the steroids.

But I got them anyway.  The treatment lasted about 45 minutes.

I’m speaking at Lori’s service tonight, so came equipped to the treatment with my Bible and a notebook.  Also helped me put things into perspective.

Well … a little anyway.

I did have a hard time when the nurse gave me my handicapped parking permit.  Marked permanently disabled.  As I’ve mentioned, I have a really hard time parking.  I just can’t judge the spacing right and really stress about it.  And I’m learning, when I’m stressed {anxious, nervous or tired}, my symptoms flare up worse.

And I also had a hard time when after my treatment, I headed to the lab to have my liver levels {?} checked, as and she was drawing blood for that … I realized I need to do my injection that night.  3 pokes in one day … good times!

But I rebounded.  :)

Anyway.  One good thing, after reading the brochure above, is that it mentions talking to your health provider about “invisible” symptoms.  So when my doc came in to fill out my prescriptions, I asked about it.  He wanted to know which specifically and I told him numbness and weakness {more on that in a bit} are my major annoyances right now.  He said steroids can actually help with that!  Woo!  So I’m adding that to my prayer list …

And for how I’m doing otherwise?  As I said the treatments haven’t helped a whole lot yet.  Some facial numbing decreased.  But add to that limbs that fall asleep frequently on you … not cool!  The other developing symptom I mentioned is that my legs have started weaking.

I first noticed it the very beginning of September and was pretty subtle.  Just enough to tuck in the back of my mind and think “hmmm …”

But last Friday, it had gotten a whole lot worse.  I was headed down to Chicago for a fundraising event … a cruise off Navy Pier for JDRF, that affects my little friend Emily.

At the train station, we needed to move to the other side of the track and the stairs just about wiped out my legs.  They were shaking and not in good shape.  I can feel their weakness even when I’m sitting.  And at one point on the train, I got up to use the restroom, but was squeezed between 4 people and having a difficult time getting up and staying steady.  Then once on the boat, rocking out on the lake … between my vertigo and “sea” legs … I was in bad shape.

I was seriously thinking about a cane at that point.

They’ve gotten better.  That was definitely the low point.  But I’m still unsteady when I walk.  I can feel the weakness.  I don’t think it’s visible to others {unless I’ve taken a sleeping pill, and I’ll get to that in a minute}.  It’s just that it’s something I think about.

I don’t know if that makes sense … every step I take, I have to think about.  I can feel the unsteadiness in my legs … in every step.

Stairs are particularly hard.  And carrying children on stairs is something I won’t be able to do much longer.

About those sleeping pills?  I’ve been having trouble sleeping … not a huge deal.  Most times, I’m not up very long, just very wakeful and restless.  Anyway, when I was getting my IV, the nurse said she was ordering me sleeping meds too … hmm.  Okay.  I’m game for that.

When the doc was writing up the script, he said it’d be a low dose and I wouldn’t feel groggy in the morning.  Sounds good to me!

Well … I took one that night and finished up some emails and was going to head to bed.  Luckily, CJ had come into my office to check on me, because when I stood up, I couldn’t walk.  I’m pretty sure it was a combo of the drug and the weakness in my legs … it hit me like a ton of bricks … I was so unsteady on my feet, he pretty much had carry me to bed.  And then I slept fitfully.

So I called yesterday and they prescribed something else.  I did better on it last night, but it also makes me feel a tad unsure on my feet, so not sure I’ll be taking them regularly.

One last thing I’d like to mention … my marriage.  Communication is something we’ve always struggled with.  We just have different styles.  CJ is a business man and skims when he reads.  No fluffy stuff for him, just get to the point.

I, on the other hand {and maybe most women?} … like to tell the details, the fluff, the surrounding circumstances, a whole picture to tell the story.

Right now, I feel like we’re in a communication standstill and working hard to get past it.  As I mentioned, I know I need to talk more about what’s going on with me.  At the same time, I feel like I’m trying desperately to sort it all out and make some sense of it myself.  When I have flare-ups or my symptoms get bad … it’s so hard to explain exactly what I’m feeling.  And when you’re married to a facts man … it’s hard to come to one common place in your understanding.

We’ve found a counselor that we seem to like.  I think she’s helping.  She’s sort of no-nonsense and to the point.  We both like that.  I am a fan of getting help wherever we can get it.

Why am I sharing all this with you?  I’m not so sure.  Verbal throw-up? ;)

I’m going through a lot.  Feeling a lot.  Sorting through a lot.  And you, my dear friends … get to come along in that journey with me!

I believe in not just venting to vent, I usually like to depart with some sort of wisdom or inspiration.  I wasn’t sure what that would be with post.  In some ways, I thought just the raw honesty I’m feeling and sharing would be enough.  And then I just got this note from my mom … “word for the day” … perfect for what we’ll be facing tonight and a perfect way to end this post.  Thank you mom …

Refuse to allow the enemy to steal your hope by blanketing you with discouragement. Breakthrough is imminent, but you must take your stand on My promises and be unwavering in your faith. I am your very present help in times of trouble, and I am with you to lead, guide and direct your steps. Trust Me to move you in the flow of My Spirit, says the Lord. Do not be afraid.

God is our refuge and strength, a very present help in trouble. {Psalms 46:1}


Posted in eye update, multiple sclerosis