Archive for kids

Infusions – FAQ

I keep getting questions about my infusions and some of them just prove to me that I need to do some better explaining about what the treatments are intended to do.  I’m going to write it FAQ-style.  Most of the following questions have been asked of us recently.

Q:  Are you feeling better?  Are the treatments working?

A:  The short answer is – we can tell the treatments are working if nothing changes.  The longer answer – the purpose of most (maybe all?) Disease Modifying Drugs (DMDs) used to treat MS is to slow or stop the progression of the disease.  Left untreated, most people with MS will experience additional symptoms over time which will continue to affect their bodies.  The DMD that I am on – administered via infusion – is intended to keep the disease from progressing.  So if it is “working”, we will not really know until we continue to see no changes, no new symptoms.

Q:  How much longer do you have to do these treatments?

A:  Forever.  Well, at least for as long as we (Alex, me, my doctor) feel that it is keeping me stable and keeping my disease from progressing.  Which could be forever.  When people go off their DMDs, they often see progression of the disease and return or worsening of symptoms.  So I will be on this particular DMD for as long as it works for me (I am in contact with people who are on their 60th infusion).  That’s why we called it a “long road”.

Q:  What are the side effects of the infusions?

A:  Obviously there is a list of side effects put out by the drug company, but this is what I usually experience:  extreme tiredness for about a day after my infusion and usually worsening of the symptoms in my hands immediately after.  We have learned that the best way to deal with the side effects if for me to schedule a “recovery” day for the day after my infusion.  I stay home and just force myself to chill so I don’t get completely exhausted.

Q:  What is the deal with the brain virus thing that you’ve mentioned before?

A:  One of the side effects of Tysabri (the drug they administer during the infusion) is that it can “activate” a fatal, untreatable brain virus.  About 50% of the population already have this virus, but because it is a relatively weak virus, your natural immune system supresses it.  When you take Tysabri, it can weaken the part of the immune system that keeps this virus from becoming active.  In the past, it was just a gamble when you choose to do the infusions.  But now, there is a test to determine if you are a carrier for this brain virus.  Luckily right now, I am not a carrier so there is no risk for me.  However, you can convert to being a carrier at any time, so I will continue to be tested for it about every 6 months.

Q:  How are you feeling?

A:  I assume that this question is usually directed at my physical condition.  (It is often followed by “You look great!”)  MS is different for every person.  In the past, before there were so many great treatment options, MS could leave people looking/feeling pretty debilitated.  I think this is often what people expect when they haven’t seen me for a while.  I feel pretty good.  My two biggest symptoms are extreme fatigue which comes & goes (and is unrelated to sleep or other physical factors) and altered sensation in my hands.  The best way to describe what is going on in my hands is that they feel like I went outside in the snow without mittens, built a snowman and then came back in – they are in this constant numb/tingly state that almost feels like they are thawing out, but it never goes away.  Consequently, I have lost some dexterity and feeling.  The severity of it fluctuates, so some days it is really bad (you’ll know when you get an email with tons of typos!) and other days they feel semi-ok…but never completely normal.

Q:  Is that the only symptom?  How bad does it get?

A:  I’ve had 3 big relapses as well as smaller episodes of symptoms and of optic neuritis (problems with my vision).  The last relapse was pretty bad.  About 99% of the people in my life did not see that (which to be honest I am glad of) because it was bad enough that it kept me at home.  I had so much numbness, tingling and affected sensation throughout most of my body that I couldn’t walk without looking like a VERY drunk person.  I couldn’t safely go up & down the stairs in our home, I had pain and sensation that kept me from sleeping or being comfortable when I was awake.  I had muscle spasms that made me jerk unexpectedly.  I had such extreme fatigue that I spent most of those days sitting/laying down.  The one day that we ventured out to go to Alex’s family day @ Boeing, I had to tour the factory in a wheelchair.  Not fun, not pretty.  Glad the meds are working!!

Q:  Have you tried XYZ diet/treatment?

A:  Maybe?  We’ve looked into lots of different diets, treatments, new drugs, etc.  I don’t mind a quick link to an article or reference to something you’ve heard about, but we have done our research.  Lots of it.  We have a great doc @ the Virginia Mason MS Clinic, we are up to date on new meds and new clinical trials for alternative treatments.  We feel really confident that we have chosen a great team to partner with in my care and a great treatment that is doing what it is supposed to do – keep me in remission.

Q:  How are the kids dealing with this?

A:  Like kids.  They don’t really have the “baggage” that a lot of us grown ups have about what MS means (or can mean) to a person.  They did see me at my worst during the last relapse and it scared them.  But they’ve also seen us be proactive and they are seeing that I am stable on the DMDs.  We have been very honest with them all along, trying to explain the truth about what this diagnosis means without scaring them.  For the most part, I think they don’t really “get” it.  But that’s ok.  They do get worried sometimes.  They ask questions and we answer them honestly.  And they are a huge help on my treatment days, they do see the importance behind the infusions and that the DMDs are keeping me in remission.

I hope that answers lots of questions.  I’m happy to answer others you may have, leave them in the comments section and I’ll do my best to answer them.

A few links to great info about MS and about the specific DMD that I am taking:

What is MS?
About Relapsing-Remitting MS (RRMS)
About Tsabri (the infusion drug)

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Winding Yarn is Believing in Miracles

I stand on my warm front porch and I gently slip the ball band off a skein of beautiful handspun yarn.  I take a deep breath, wrap it over a chair and start winding.  And I realize that it is a step of faith.  I wind and I think and I realize that I am steeped in miracles.
~
Anyone who knows me, knows that I have been a knitting maniac ever since I learned to put sticks to string 4 years ago.  And if you know my journey, you also know that my immune system has been slowly turning against its own body in the form of MS and that my hands have suffered because of it.  I stopped knitting a while ago and haven’t picked up needles or yarn for quite some time.
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I had several unfinished projects here that I thought maybe I would be able to finish someday.   But it became apparent that my hands are altered too much to handle thin yarns and the projects have been a sometimes painful reminder that something I loved is gone.  I finally sent those projects off to internet friends who agreed to finish them for me.  The first finished shawl came in the mail today and instead of being sad as I had thought I might be, I was excited to open the package.  The shawl is gorgeous and I realized that instead of being reminded that I couldn’t finish the project myself, I am looking forward to wrapping myself in the attentions of a faraway friend, who – though we’ve never met – put time and love and thousands of stitches into this lovely shawl.
~

I wind the yarn and my thoughts turn to Colorado.  The events this last week grieved me so deeply.  I can’t explain why, but it has been so heavy on my heart and difficult for me to listen to the news or read the details.  I wind my yarn and I watch my little boys from the front porch. Little boys who don’t understand that mama’s hands don’t work, don’t understand men who shoot into dark theaters, don’t even think about these things that are constantly on the minds of the grown ups around them.  I think about Colorado and I pray for the people there.  And I pray that my boys will grow up to be men who throw themselves in front of bullets to save the women they love.  I think of the miracles that happened in that theater and the miracle of two little boys and warm sun and cool water.

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This yarn is the color of a stormy sea, and I think how amazing that a short time ago it was fluffy and white and stuck to the back of a sheep!  Now it is the color of a mermaid’s tail and some skilled spinner has teased it into a twisted barberpole of yarn.  It occurs to me that the act of winding it means that I believe that I will knit it.  The act of wrapping it into a ball is an act of faith.  Friends bought this yarn for me, now I wind it and think of amazing people who love me.  I think of the miracle of friends who drive me to infusion appointments and friends who show deep care and concern for what this diagnosis means to our family.  I wind my stormy sea yarn and I believe that I will knit it and I think how very grateful I am for the friends in my life.
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A boy runs up and I give him a kiss and the thought comes that all of mothering is an act of faith.  We hug them, we chastise them, we fill wading pools with water, always believing that what we are doing will somehow guide them into being lovely, caring, thoughtful, ethical humans who will make the world better in some small way.  We have faith that these boys will grow up to be part of a miracle for someone else.  That they will grow up to be the husband who says that a debilitating disease does not change one thing about his love, that they will tread lightly on the hearts of those around them, that they will report child rape at the risk of ending their sports career, that they will be miracle MEN.  I wind my yarn and have faith in my mothering and in my children.
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I finish the winding.  Reluctant to leave the warm porch, I stay for a minute and watch the boys splashing water, listen to an older sister lovingly dote on them, soak up the sunshine and admire my miracle of a wound ball of yarn.  I dream about what I will make with it, because of my hands….in spite of my hands.  I have faith in the miracle that I will create, the miracle I will be a part of, the miracle I will watch unfold and fall off of my needles.  And I revel in the miracle of life that goes on in a wading pool, life that marches on in Colorado, life that lives in wonderful friends and eight amazing children and one breathtaking husband.  And I say a prayer of thanks and take my yarn inside and wait for the miracle.

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1 down, 7 to go!

Our weekend involved watching our oldest son graduate from highschool.  What an amazing experience!  It was just SO COOL.

Alex & I thought we would be crying up a storm, but surprisingly, we both held it together.  Our oldest daughter, Olivia was the one who did most of the crying!  She was just so sweet, thinking about her big brother being gone soon & our family changing brought her to tears.  She is in the high school band and they were playing @ the ceremony, so we could see from the stands that she was crying.  It took us a while after the event was done to make our way through crowds to find her and as soon as she got hugs from mom & dad it just brought on more tears.  She has such a tender heart and we both felt like it showed the bond that the kids have with each other.

Graduation ceremonies were Saturday afternoon, then Nathan went on the Senior Grad Night that evening.  Then Sunday afternoon, we had friends/family out for a BBQ in his honor.  When we got home, he opened his cards and while passing them around, all the other kids got a taste of what gets put into graduation cards (moolah, baby!) and they were all very motivated to get themselves graduated!

The kids decorated the van windows w/paint pens and Nathan thought that was pretty cool.  Unfortunately, I didn’t get any pics before the rain that came right at the end of the party yesterday.  We also learned lessons about what pics to try to remember to get for next time as we didn’t snap any of Nathan alone or of just Nathan, me & Alex.  But we got some others with his grandparents, which I’ll share.

Nathan with grandpa Buxton, grandma Terri, dad & grandma Buxton (this is Alex’s mom & her parents).

Nathan with “Goppy” (my mom).

Now Nathan will be busy studying for his ASVAB (military test) and getting a physical in preparation for pursuing his plan of enlisting in the Air Force.  He also has plans of finally getting his driver’s license.  And now Alex & I will have to begin to make the adjustment from having 8 “kids” in the house to having 7 kids and one “almost-a-grown-up”.

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Almost exactly one year later…..

It’s been a year.  I just popped over here to see what the last thing was that I had posted & I found summer pics of a very adorable, very bald-headed baby.

He is still very adorable, but with a TON more hair.  Check out some recent pics of the boy:

This is @ the Kingston 4th of July “Tiny Town”.  He just made this super cool necklace!

Here he is with his freshly made visor AND cool necklace!

This was him hugging the yarn we picked out for his new sweater.

Here he is modeling the sweater I just finished for him.   He was sooooo excited about it!

This was his “America’s Next Top Model” pose – he’s being coached by his sister.

And here’s one of me…..it’s a few months ago & my belly is bigger now, but you get the idea!

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Summer Fun

We’ve had record-setting heat here the last few days and we are all just trying to find ways to stay cool.  Sometimes I wish I was a baby, it would make beating the heat sooooo much easier.  I’ll let the pictures speak for themselves.  (I so wish I could share some of the bare booty pics with you…too cute!)

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South Sound Yarn Crawl part 2

To finish up the details on my SSYC adventures, we went to the Viking Fest parade to watch the kids march on Saturday.  They were great, I always love watching our band march by!

Ok, back to the yarn crawl!  As soon as our band went by, I ditched the parade & made my way through the crowd with a friend to Amanda’s Art Yarn in downtown Poulsbo.  Got my passport stamped and headed back to my family.  Her free pattern was a cotton market bag.  Got lots of rest Saturday night and woke up ready to go Sunday!

First, my mom & I (& baby) picked up some new friends who I had connected with via Ravelry.  They live on the other side of the Hood Canal bridge and the bridge closure was going to put a serious damper on their crawl plans.  They took the water shuttle and I picked them up in Port Gamble.  Then picked up my friend Tarra & her mom.I had mapped out the route the night before, so we started with Allyn Knit Shop.  The owner there was great and the shop was waaaay more than I expected to find in Allyn.  I’d definitely go back to this one again!  She was giving out DPN holders and was super friendly (with a great bathroom!).  She had a lot of fiber/roving and spinning supplies too.  Forgot to snap a pic here.

Our next stop was Fancy Image Yarn in Shelton.  Very cool shop with tons & tons of hand-dyed (by the owner) yarny yumminess.  Also, she had lots of very cool kits for fun & funky hats, baby sweaters and more.  The store is in a little house that is painted so bright & cheery and you get a free card featuring the owner’s amazing photography with every purchase. 

We looped down and around to Lakewood next and went to Shibori Dragon.  When we walked in, I commented that this place was the “trifecta of temptation” as they are side-by-side (and connected) to a fabric store with tons of way cool designer fabrics AND they have a ton of cool beads with a great section of beads.  They had some fun yarns that I hadn’t see near home.  Their free pattern was a spa-style soap holder.  Very cool.

Next we worked our way to find Yorkshire Yarns.  Luckily, I had seen on Ravelry that the store wasn’t actually open yet as they were moving to a new building and hadn’t received permission from the city to occupy their new space yet.  So the ladies of Yorkshire were out in the parking lot stamping passports.  We had a hard time finding it as the directions I had were to the old address, but eventually we figured it out.  Sonya (the owner) was so friendly that I would definitely love to go back once she is in her store to check it out.  Her free pattern was a very cool knitted purse using Noro.

After Lakewood, we headed to the Tacoma stores.  First went to Lamb’s Ear.  It was a great little shop & I found some Berroco Comfort which I had been looking for.  I’d love to go back to this one!  Her free pattern was a neckwarmer made from “Touch Me” yarn which is so super soft!  Also, the general consensus from the group was that this place had the best bathroom!

And the last stop for my mom & I was Fibers Etc. (no website).  This was the one we needed to visit to finish off all 10 stores, get our final stamp & turn in our passports.  We got a SSYC commemorative bag (kinda cheesy to be honest, hopefully next year they maybe give out a bag that could be used as a project bag or something).  Her free pattern was a very cool shrug (although I think it’s more than 1 skein).  This store was amazingly packed with stuff.  I’d love to go back when I could really look around!  I also loved how she had it organized by color.  I forced my mom to let one of the other gals in our group snap a pic of us getting our final stamp!

That was our final stop but the rest of our group hadn’t done any of the other stores.  There was just enough time to hit one more – either Gig Harbor or Port Orchard.  The group preferred to go in to A Good Yarn so that’s what we did.  One last stop & then dropped everyone off and home to check out my swag:

It was a ton of fun.  I’d love to do the Seattle area one next year.  That crawl does store drawings and I think more of the stores give away goodies.  I think it would be fun to see some of the stores on the other side of the water.  This year definitely gave me an idea of what else is out there within a reasonable distance from my house. 

Also, I just have to say I have the most amazing baby!  He was so good and never fussed the whole time.  Rode so quietly in the van, smiled & played with all the ladies at the yarn stores and was just an angel baby!  And I left my angel hubby at home with the rest of the kids.  He was so great to let me go off with my mom & friends for a whole day of playing with yarn.  I am lucky.

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