Welcome

Welcome

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.

12
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}

Related Posts Plugin for WordPress, Blogger...

Posted in eye update, multiple sclerosis

 

9 Responses to “hurray for full doses!”

  1. Kelli says:

    Tracie,
    I wish I could say..” I know what you are going through”..but I can’t. I can say that on some level there are times that we all go through, myself included, where we are so afraid and hurting inside and feel as if no one can or ever will understand because what we are feeling is not visible to others.. and that makes things seem very bleek. Keep talking. Keep writing. We are here ..and even if we don’t physically speak we are listening.

    Kelli

  2. Janie says:

    Oh Tracie…I am praying for you everyday. I gave your website to a friend of mine at work. She told me on Monday that her doctor thinks she might have MS. I have now added her to my prayer list. She is very scared…she said she took a look at your site but got even more scared…however, she thinks your words will help her in the days to come and I am glad that she has a place to go for that.

  3. Heather says:

    this is a very brave post…thank you for sharing such deep, personal stuff…it’s a hard thing to do! and please continue to share (that’s what it is you know…sharing, not venting) too. know that a world of people love you and want to be here for you…however we can!

    praying for strength, peace & God’s love to be with you and everyone at Lori’s service tonight

  4. cyndi says:

    That’s it – I’m coming to Wisconsin to give you a hug! Clearly that won’t help you with your symptoms but I hope it helps a little to know we’re all out here praying for you and sending positive thoughts.

    Your honesty is truly refreshing and I think you’re doing a phenomenal job of raising awareness of MS. Truth be told before I began to learn about it from you I only had a slight knowledge of it. And by “slight” I mean I knew it stood for Multiple Sclerosis and that’s about it. By bringing me on this journey with you it makes me want to fight against MS myself! That’s exactly what I’m going to do…the next time there’s a MS fundraiser in my area I’m going to participate or donate or whatever I can to assist in your fight. What do you think – is that a good idea?

    I pray you’ll have the strength you need tonight at Lori’s service and know in my heart of hearts that you’ll touch so many people when you speak. She’s watching over you and your words & tribute will make her smile. Remind me to tell you a funny story of what happened when I spoke at my friend’s service all those years ago. I’d tell you now but don’t want to make you even more nervous.

    Thank you again for being such an inspiration and for allowing us to travel this journey with you. I hope we’re able to be the cane you need to get through the difficult times.

    Hugs…

  5. suzanne says:

    I hope you can find the courage God can give you when you need it. Isa. 41:10….

    Suzanne

  6. Kris K.L. says:

    tracie.. i feel sad for you but I know thats not what you want.. your so brave and strong and i’m proud of you… its like i’ve said before you somehow comfort us more when its actually you that could use the comforting I don’t know how you do that but I guess thats why you were chosen to have the path you do.. you have so many wonderful people in your life and I know you touch every one of them… even people that don’t know you as well… you are always looking at the bright side even when its cloudy maybe thats why you like rainbows so much !! : ) I will always be here for you~

  7. Pam S. says:

    tracie, if you lived closer to me & came for a visit you could park anywhere on our street or in our lawn, on an angle or backwards. hearing all you have to say is so important to me, having friends with ms. thanks for going public with all you feel, what helps, what hurts. you are brave. congrats on your full dose & your steriods.

  8. Suzy says:

    Hey Trac,
    You shouldn’t be afraid to share any of what you’re going through – judging from all of the wonderful and caring comments on your blog, this is your outlet and support group – we’re all here for you to share any of your probs with (MS-related or other).

    I’ve been meaning to share this quote with you for a while…
    “I know God will not give me anything I can’t handle. I just wish that He didn’t trust me so much.”
    -Mother Teresa

  9. Kristen says:

    Hi. I’m just a random beginner photographer and photography blog stalker. I found your blog randomly while cruising the internet for inspiration and I was so touched by your post. My husband was diagnosed with MS almost 2 years ago. His Mom also has it. I had so many fears and questions and I guess I still do. My husband is very much a to the point person and doesn’t share his MS “fluff” with me too often. Combine that with his “invisible symptoms” (the most major he is dealing with is optic neuritis in both eyes) and I feel like I don’t understand enough. I feel like I don’t know enough or do enough. It was so helpful for me to read your honest “verbal throw-up”.
    I don’t know what medication you are on, but my husband felt flu-like achiness with his full doses for quite a while but it has subsided. Good luck!
    And, by the way, you are an amazing photographer. I can’t wait to see and hear more from you.
    Thank you.

Leave a Reply

share your last post?