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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.

7
Aug

faces of multiple sclerosis

Hmm … what to say?  I want to update you all on how I’m doing.  But at the same time, be careful not to turn this into an ad for MS.  ;)

I guess it’s my blog … my journal … of my life … and now my life includes MS.  So I suppose it’s only natural we’ll be discussing MS from time to time, right?  And you’re all okay with that, right?

After a bit of phone tag, some tears & begging {me, not the nurse}, I finally got my nurse visit last Thursday.  She couldn’t have been sweeter to fit me into her schedule.  CJ was headed out of town the next day, and I really wanted him there for the training.

She comes in and we all sit down.  It’s times like that, that I realize how crazy my life is.  Four barking dogs, kids running amuck.  Taylor was trying to make herself lunch … I’m watching her burn her hands in the steam of what she’s making … I have to ask the nurse to wait a minute so I can explain to Tay what she’s doing.  And just as I’m ready to give myself my first injection, Wynt comes over, flops down and says, “whattcha doing?”

Sigh.  I think one of the harder times in this process was when we explained to the kids that I was ‘sick.’  We were up north and I was trying to get ahold of the nurse line.  They finally called back, so I left dinner for 20 minutes to talk.  When I came back, Wynter asked if I was sick.  Curt and I hadn’t really discussed what we would tell them, so I sort of looked at him for an answer.  He said no.  Wynt asked why I had a nurse then.  I looked at CJ and said we really should tell them.  So we did.

Told them about the name of the disease and that I would need to give myself shots.  “For the rest of your life?” Wynter asked.  CJ said no.  I said yes.  “For the rest of my life.”  I had just talked to the nurse and asked her that very question.  For as long as I want to try to hold off further progression of the disease.

It was in that moment, “for the rest of my life,” that everything started sinking in.  And just to assure … we were very positive in what we told the kids and they were good with it.

Back to training … it was hard giving myself that first injection.  But I did it.  No one knew, but I was fighting tears.  Actually, I think the nurse knew … and she encouraged me.  Told me what a great job I was doing.  I kind of have to chuckle … really?  Doing a great job giving myself a shot?  :)

So … here’s my paraphernalia.  For some reason, it’s the sharps container that gets me everytime!  Who would’ve ever thought I’d have the need for a sharps container in my home?  Or shopping their website {I’ll spare you the link} for a compact travel solution.

multiple sclerosis supplies

Until I get use to things, I have this cheat-sheet mat to use.  You lay everything out on the mat and walk through the process.  Right now, it takes me about 15-20 minutes … but once I get the hang of things, should take me a little over 5.

There’s a whole, little process involved.  Attaching, mixing, shaking, sterilizing … then I get the auto-injector thingy ready.  It’s really a clever little machine!  I don’t see the needle at all until after I take it out {of me!}.  The hardest part for me, is pulling the trigger.  Yeah, there’s a literal sort of trigger … with a loud snap … that releases the needle.  I leave it in for 15 seconds {count it out … one onethousand, two onethousand … it’s a long time!} to get every drop of medicine out.

Right now I’m on a titration dose … meaning I’m slowly moving up to my full dose.  That’ll help reduce side effects, and so far, I think it has.  I’ve felt a little … but I don’t think nearly as bad as if I was the full dose.  At 7 weeks, I’ll be up to my full dose.

I’ve had two injections so far, and tonight will be my third.  Saturday, with CJ gone … I was at it alone … and it went fine.  I did it!  I’m doing it!  Yay me!!  ;)

Alrighty then … some good news … look at the cute bin I found at IKEA to store all my stuff!!  Cute, huh?

multiple sclerosis supplies

Lastly, my friend Tiffany was in research mode again and happened upon this video.  I really hope you’ll watch it.  It’s a little lengthy {I mean, come on, who has 4:13 minutes to sit and watch a video?!?}, but it’s the last minute or so that has the most impact … I guess at least for me it did.  In fact, for some reason, I haven’t cried that much since my diagnosis.

Oh! I should tell you … U2 is the soundtrack … so maybe it is worth the time investment?!  Have I mentioned what a U2 freak I am?  No?  Another post then …

The film is a joint project of the Multiple Sclerosis International Federation (MSIF) and the Hertie Foundation launched on the first ever World Multiple Sclerosis (MS) Day, 27 May 2009. It aims to capture the attention of people worldwide, motivate them to learn more about MS and become involved in the global MS movement.  You can find more information on it here.

And I guess as a larger picture {cuz you know how I love the big picture!}, what the film tells me … is that we need to be kind to everyone.  Everyone.  We don’t know what they may be suffering with, or dealing with.  Someone may look okay on the outside, but hurting so badly on the inside.  We need to start being kinder and more understanding of those around us.

Thanks Tiff for your research powers, care and love! ;)

And just a huge thanks again … to everyone for your concern for me, for your calls, emails, flowers!  I’m loved.  I’m blessed!

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Posted in blessed, eye update, movie, multiple sclerosis

 

8 Responses to “faces of multiple sclerosis”

  1. LobotoME says:

    So proud of you for giving yourself those injections!!! it’s amazing what we can step up to the plate to take on when we have to! Take good care of yourself and keep us posted ~

    xo, J :)

  2. Sue says:

    Wow, powerful video! You are now one of the many voices of MS and I would love to support your cause anyway I can. I love the idea Terrie had the other night.

  3. Tiffany says:

    Goosebumps! Thanks for sharing your life:)

  4. Pam S. says:

    It is a beautiful day and you seem very brave to me, even though you don’t feel it. I have a friend here in PW, with three kids (Talan, River & Poetry), that was diagnosed with MS in the Spring. Maybe one day when the kids are in school, I could introduce you two. Of course, the video made me cry. Thanks for sharing your voice. I will show her this page. I know it hasn’t been easy.

  5. Heather says:

    This movie is really great…really puts a “face” on something (ms) that is so hard to comprehend for me (different for everyone, progresses at it’s own rate, etc.). I’m so proud of you…just the image of your training mat is overwhelming (for me & I don’t even have to do anything with it)…please keep posting about your journey and know that we are all here to support you! Love you!

  6. Kelli says:

    You’re strength is amazing! I would imagine it has to be very difficult to remain strong and brave at all times. Your children have to be very proud! Keep up the good fight!! We are all here for you..and praying!!

  7. Cathy says:

    Great video! I too have a family member with MS but never really understood it. And it’s right, there are 1000 faces (and SO many more) who have been affected by it. You’re an awesome and powerful voice in all of this! Hugs!

  8. cyndi says:

    I wish I had the words to properly convey just how awesome I think you are.

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